Momma's Thoughts

I don’t write for 11 days and see what all happens?

2011-06-09T13:28:00.001-04:00

Well, let's see, what HAS happened, I am almost done with Physical Therapy, Insurance is kind of stubborn, they will only pay for 4 weeks unless I have a Marked improvement, Dr. Maltese wants me in for 4 more weeks, BUT, because my body hasn't responded by more than a 2 inch leg lift, improvement, and I am still only able to lift about 4lbs without pain, Medicare says UHM, No.

SO, here we sit, Monday is my final day. BUT, that isn't all that has happened though. So it's ok.

My pain has actually gotten somewhat WORSE with some of the exercises and only a few help, I can step about 2 inches without pain, and over about 4, but I have to HOLD my hips, so I still can't do a lot. Then, we move on, My heart monitor came off on the 28^th of May, it felt good to go bye bye, I still have scabs and bruises from it, that half surprises me. I have been on the Oxygen for 4 weeks today. It helps A LOT. I am sleeping better than I have in years, and feel refreshed when I wake up most mornings something I have NEVER done. It also helps relieve the headaches back into the measuring area (it took off the chart headaches and put them back ON the chart)

When I saw Dr. Al Kassab on Tuesday he scolded me about my Cholesterol, but the rest of my numbers he said were all good. Then when I left his office I picked up housing applications for 2 subsidized housing places before I went to see Dr. Maltese. Seeing Dr. Maltese was a good appointment too, he checked for the weakness which hasn't gotten much better, since insurance refuses to keep me in therapy and Dr. Dobrin keeps me on REGULAR Pain meds, he scheduled me with pain management to get the pain in my BACK under control so I can have some sense of LIVING again. I have always hesitated on this in the past, but now, I guess I am at the point where I am ready, My back and neck hurt CONSTANTLY, and put me in tears daily. So…Friday afternoon, I see the Pain management docs at Beaumont center for wellness. I am a cross between Nervous and excited.

Wednesday, I was scheduled to see Dr. Matthew Weiner, a bariatric surgeon with a special interest in the digestive system (basically a surgical gastroenterologist when it comes down to it, although he IS a general surgeon, most of his surgeries, are either Hernias, Gallbladders, or Bariatric) I went in knowing I had already gone through the process almost completing the bariatric process (I did Everything except the psych eval and H-Pylori blood test) for another doctor before he retired. I went in with Very little expectation, well that's not quite true, I went in expecting him to tell me exactly what he did when he walked in the room (in a slightly different way, but basically the same thing) with ONE exception, when I mentioned that I had been sick since I was 125# and it's never really mattered what my weight is. Well because HE isn't really familiar with my intracranial hypertension, and all of my Other weight related things all came on AFTER my shunt came OUT, he really could see that my concerns THERE were valid, so he asked me why I came to see Him… lol…I admitted, I only came to see him because my PCP, Dr. Dobrin had been bugging me to see him because of my tummy troubles for the last 6 months, and I really didn't want to, I figured I didn't eat enough and if I wasn't losing weight by not eating, I really saw no point in having surgery to help me lose weight if I can't eat anyhow due to swallowing pain and nausea. So he started asking lots of questions and I mean LOTS, like a rapid fire go around, I just sat there dumbfounded, he was asking and asking and asking away…and you could see a lightbulb go off in his MIND, and he said I will be right back, and he left me sitting there and he went and he called my GI doc here in Rochester Hills, Dr. Wille, and they talked for nearly a half hour, and when he came back in he explained his thoughts, and said, he wanted me to have some testing done, an esophageal manometry and a Modified barium swallow study, yee haw, neither are going to be fun, in the one, they anesthetize and stick a tube down your nose, into your throat and now the esophagus, and then pull it back out 1cm at a time all the while you are making the attempt to swallow it back down, to check the pressures against the tube, sounds painful and NOT fun

The other one is checking how different textures affect the throat and cause the gag reflex to work to make sure things are going down the right pipe when eating, basically why am I choking when eating and drinking so often (especially on things like water and my pills and foods that aren't semi thick

So…if it's not my digestive system causing issues, he is going to be researching IH to see if he can find any good studies that show SUCCESSFUL cure rates or even improvement rates after bariatric surgery that has more than just a few participants.

I went in skeptical and came out quite impressed, he drew 8 tubes of blood for various vitamin defeciencies and he is really looking at the WHOLE person not just a number on a scale. I was prepared for him to just blame my weight and not care about the rest, he is REALLY intelligent and not like the rest of the doctors I have dealt with outside of Beaumont, he is a DMC doc, which is why I was so scared to see him, since Dr. Ing left, I have not had a good doc through the DMC, while Dr. Guthikonda, found the Chiari, he really didn't seem to care one lick beyond it…its THERE and he just said lose weight and everything will go away from there. I want results, not just a risk, Dr. Weiner said the risk for me is HUGE, because of my responses to Anesthesia, my Chiari, after all my BRAIN is causing all these issues, if I am thin, is it REALLY going to make it better, OR is it going to make it worse?

Way too much going on

2011-05-28T21:32:00.001-04:00

Chris and I celebrated our 10^th anniversary this week, I wish I could say we went out and did something fancy, but finances are not what we would like, so we stayed home and spent it together.

2 ½ weeks ago I started on my oxygen at home, I thought it was going to be a part time thing, since I was told I only drop when I am active, HOWEVER, I apparently drop as soon as I get up and move around, so I am on it 24/7, 3 liters per minute. Being on the Oxygen really is not that hard to deal with however, I can tell if I forget to put it on, my headaches are MUCH worse and I turn kind of red or purplish.

My Heart monitor is Just about done (comes off at the end of next week) which is REALLY good seeing as the leads are eating my skin now. I am very ready for it to be done, have been since 4 days in. I am really hoping it shows something so she doesn't want to test more because the oxygen is helping with the dizzy spells (it isn't making them go away completely, but it definitely helped a good deal)

Tuesday I had my colonoscopy, Dr. Wille said it looked good, but he took some biopsies anyhow. I have had a lot of nausea still after, so I guess we will wait and see what the biopsies showed. Basically what he said was that he thought it was likely IBS though, ugh. That doesn't Help me much as he had me on a med for that before and it did NOTHING, so…uhm, we will see, the nausea and abdominal pain cant continue, nor the rotation between Diarrhea (3 weeks til colonoscopy, now I haven't gone since it, so am back on colace, arg) I see him again in July, so he has time for the biopsies to come back.

Been in Physical therapy for my Low back, I was evaluated and have to go find out what insurance covers for an AFO brace, woo Hoo, I need to do that before next Tuesday. My MRI showed NO disk anomalies, and only arthritis from what I was explained. Its not doing much, the traction feels good til she lets loose, and the stretches I can feel are stretching, but I don't feel them after I release them, so I do not know if they will last. Most of them I cannot hold or do for long, or feel effective doing because of the pain they cause even trying them.

Other than that, we are looking for a place to live, we are going on many waiting lists and praying that the right handicap apartment opens first. Most have 12 month or longer waiting lists, or do not accept pets, the ones with shorter lists are way far away, or do not accept Lauren. My family needs to stay complete. God is going to work this out and I know it will ALL be ok, I just do not know how it will work out.

I don’t even know where to begin

2011-05-09T20:10:00.001-04:00

Last week I saw a new Pulmonologist per the request of the cardiologist' np well Dr. Galens wanted some tests as expected, he ordered some bloodwork which I had drawn this morning, a Pulmonary Function Test which I will CALL and get results of on Wednesday afternoon and a 6 Minute walk to check how my Oxygen levels are on exertion since I get REALLY dizzy and short of breath EVERYTIME I get up and walk or DO anything…

I FAILED the walk. When I say I failed it, I mean within the first Minute my o2 stats had dropped to the low 80s, the 2^nd minute I was in down to 77 and put on o2, when we did the 3^rd minute I was worked all the way to 3 liters of oxygen to keep my levels where they are SUPPOSED to be. Uhm, I had meltdown number one.

After I left his office, I HURT, and I HURT bad, the pulmonary function tests HURT especially when you have a hard time breathing…I am almost hoping it showed an improvement after the nebulizer and he writes one of those too, cause I noticed an improvement, it didn't hurt as bad to breathe.

Then I went to see my Primary care, I LOVE that woman, I have NEVER been so blessed.

She went over ALL of my other docs (14 docs is way too many for a 34 year old, lol) but she is Thrilled that everyone is taking such an Active approach to GETTING things done, she smiled at my heart monitor kinda funny cause I was nervous about it cause she was so wishy washy about the cardiologist (maybe finding out about them needing me on Oxygen FIRST made that decision a good thing, lol) she was a bit irritated about the goof up on my blood pressure meds, but agreed that I could stay off of them if Dr. Kutinsky will be checking that kind of thing in June (which I am POSITIVE since her office is TECHNICALLY who put me on it in the first place she will…my blood pressure was 144/98…and that is way higher than normal, she wouldn't care if it wasn't for the 98 part, its usually 134/88)

Then I went on to Dr. Maltese the rehab doc…I cried in his office. He noticed Immediately that my left leg still is not functioning like its supposed to, but not only is it not functioning, its actually showing what they call foot drop (he described it as tripping over your own feet (which I do when I am too stubborn to USE the walker) but he also checked the strength and pain and made me scream and cry (I usually tolerate people messing back there, because of the high threshold of pain, but he either really poked hard, or hit a BAD spot, he is sending me for an MRI, Happy Friday the 13^th
J and back in Physical therapy AGAIN. He too wants me to call 2 days after the MRI (Uhm I will call on Wednesday the 18^th seeing as Friday isn't going to be too convenient for him to get records. I go back in 4 weeks.

In the meantime, Chris, Lauren and I will be packing up the house… thinning out things to be moving into the apartment. I am praying we get in before August because with all that's going on with my health this is affecting everyone and that will be a huge stress lifted off of us. We have only told his mom and my parents we applied, have not told ANYONE where exactly its located…I do like the area where we will be paying the bills, and its not that far away…the people I have dealt with have been AMAZING. I am going to go talk to Meijer's night Produce Manager next week to see about getting Banana boxes they are practical for packing (they are lidded) It's the one store I will continue to do business with even after the move because the chain is one I have been doing business with for my whole life (and I worked for them before I had Lauren)

2011-04-28T13:51:00.001-04:00

I saw the Nurse Practioner at the cardiologists office yesterday…Cheryl Vincent, she wants me to have a carotid ultrasound (scheduled for Monday) and wear a monitor for a few weeks to see if we can find an arrhythmia that may be causing the dizziness and drop spells. She is also having me see Dr. Kutinsky on June 14^th when she has had time to read the monitor.

I have to see a pulmonologist too, they want to verify that this issues isn't with my lungs causing issue…Well, they just called me. My appointment is May 4^th; it was a cancellation, not with the doc they recommended but another in the practice. I only hope he is as good as my other docs, I don't care for my sleep pulmonologist, and I didn't like my other pulmonologist either, it doesn't seem to be a specialty I like, but I need to breathe and it needs to be easier. I wish it was with Dr. Allen instead of Dr. Galens but we shall see how this one goes.

So I will have to make a list of all of my doctors, I have almost lost track of all of my doctors, I have more docs and meds than I know what to do with the numbers just keep growing too.

I need to have faith that all the doctors together are going to get to the bottom of this though.

Dr. Wille is sending me to PM&R, Dr. Bowers wanted me to see Dr. Kutinsky, and pulmonology (so He sent me to his partner another Cardiologist and Dr. Galens is the pulmonologist) and Dr. Dobrin wants me to see a Bariatric Surgeon to discuss how my GI issues may be causing some of these pains since he also specializes in GI surgeries (Dr. McIntosh also does GI surgeries, but he doesn't agree with Bariatric Surgery, and I don't either, long story short, you can't take anti-inflammatory meds and Toradol is an anti-inflammatory so I would lose one of my big gun pain meds as well as losing the ability to eat a lot of choice foods, it gives you a challenge to eat less, which I do already, and research tells me that a lot of my problems won't go away.

My rescheduled appointments turned out to be a VERY long week

2011-04-24T11:26:00.001-04:00

I spent the majority of this past week visiting my doctors. I had 3 appointments on Monday and one on Friday.

But let's go back I saw Dr. Kachan before my last entry He did yet another plantar fasciitis injection, I am not even sure this one took, I am guessing I had maybe a week or so but I didn't get any real rest time cause I had too much going on. So it was my fault…I don't remember when it started hurting really bad again cause I had too much else going on. That's on me.

On the 11^th, I had my hospital follow up with Dr. Dobrin, she wants me to see Dr. Weiner, a Bariatric surgeon who specializes in the digestive system…uhm, well…that's gonna have to wait I will eventually get there, I have too much else going on right now. I will schedule it though, eventually, I have NO interest in the surgery anymore, I just have too many health issues that I really do not feel it's the best idea. (and the docs that are dealing with my digestive system are not mentioning it, so I don't think it's a good idea) so, I will call but I will put it way off

Well…I had my EEG, they did the photo part, I have never had that, I never want to have it again either… I saw Dr. Masters, my period lasted 19 days (since it was so long and painful, she wants an ultrasound in a month (May 17^th) and I saw Dr. McIntosh, he was very happy with my progress, but All three, Drs. Dobrin, Masters and McIntosh wanted me to go back to see Dr. Wille because of the constant Nausea, Constipation, and Diarrhea as well as just plain overall lack of eating (I have lost almost 30lbs since August, no big deal, except most of it came in the last 2 months, and that's twice as fast as I should really be losing)

So I called Dr. Wille, they wanted me to see a PA, I was not comfortable with that, I was willing to wait til May to see him, his receptionist emailed him, and he responded within 24 hours working me into his schedule in literally 1 week, so I saw him on Friday, he wants to do both a gastric emptying study and a colonoscopy, neither are fun, but he decided the colonoscopy first because if it comes back abnormal he may not have to do the gastric emptying, but the other way around, well, he doesn't have that luxury, he would still have to do both.

So that is scheduled and the prep will NOT be fun, but I am barely eating, so I should not struggle too bad, its 3 days of liquid diet for me, (most people only get 24 hours, but I am blessed with 3 days of liquid diet thanks to the extensive constipation crap.

So While April was hectic, I still have one appointment, I see the cardiologist on Wednesday J

May will be even Busier.

Dr. Kachan May 4^th

Grandma's Birthday May 5^th

May 9^th The NEW doctor Dr. Maltese head of Physical Medicine and Rehabilitation

May 11^th follow up with Dr. Dobrin

May 16^th Dr. Simone

May 17^th Dr. Masters

May 24^th Colonoscopy with Dr. Wille

And May 25^th most important day in the world…our TENTH anniversary

Hmm, Where Have I been?

2011-04-05T00:41:00.001-04:00

I would love to tell you that my appointment this morning with Dr. Masters went great, and my EEG was a piece of cake, but uhm, I had to cancel them both, I will reschedule them in the morning…WHY did I have to cancel them? Last Tuesday night, I started having Chest pains, yep, Very bad chest pain right under the left breast near the rib cage. Not like a heart attack but not normal either, I called my doctor, she had left for the day, I was going to wait it out til Thursday morning and see her then, but it was bringing me to tears and Chris said no. So off to the ER we went. NOT how I planned on spending my time, little did I know I was going to be there for SIX days. I was admitted on Wednesday night about 11pm and came home at 3pm Monday.

Atypical Chest pain, turns out it was a bowel obstruction and a Heart issue and probably a pulmonary issue too…goodness gracious, I did not see pulmonary I will follow up with them from the office (my PCP was actually the doctor I saw in the hospital, Thanking GOD, I got MY doctor, I love her to pieces.)

So…I get to the ER, I get an EKG immediately, get triaged, wait for a room in the cardiac wing, lalalala, good thing I wasn't having a heart attack, lol. They take me back, I had almost no wait for the doctor, he was a jerk, but I guess it comes with the territory, he just was not very thorough, He listened to my heart and lungs, but nothing else, did not check to see if it could be anything else, DID NOT touch me. I was hooked to a heart monitor (which went off everytime I dozed off (since my heart rate dropped too low)

They did a chest xray, chest CT, and Dopler ALL before I got pain meds of ANY kind. Then I got ONE dose of Morphine and Zofran, followed by a dose of toradol later. And NOTHING at all til I got moved (see why doc was a jerk) my doc took over my case, bless her soul, when she found out my pain meds were every 6 hours she said morphine every 3hours, and added in Lortab if needed, as well as Toradol 8 hours around the clock and Fentanyl patch, so my pain was VERY well managed from then on out, I think I needed two more doses of the morphine after the Fentanyl went on.

She ordered a Picc line for my CT of the abdomen, they were looking for what was causing what she now determined to be upper left quadrant pain (the GI's Physician Assistant was absolutely worthless (and if I get a bill from the GI doctor, they are getting turned in to medicare for Fraud) He didn't see me and she didn't help me, I was very angry, and my blood pressure showed it.

Dr. Beyers, the Cardiologist, at least recommended I follow up with Dr. Kutinsky his electrophysiologist and see if she cant help get my heart and brain on the same page. He referred to her is their electrical specialist, he said she could help even though I didn't show any signs of arythmias. I am not quite sure how but he said she specializes in dizziness and shortness of breath and lightheadedness, so she would be their goto person for that…Sounds fun.

So, I left the hospital, My period started, I don't know how long it will lasts, if it goes past Thursday, I get to talk to Dr. Masters about a hysterectomy, cause its too long, (which is ok by me, I want the bugger out, I cramped for 2 weeks before it started, then I get to talk to Dr. Dobrin about referrals to Pulmonology, cardiology, and I have my podiatry appointment, I need to make an appointment with a dentist too, oh and an appointment with Dr. Wille, MY gi doc, since what happened is we did 2 doses of Miralax, 2 doses of Colace, and nothing, so she decided it was Enema time (soap suds and I HATED it, it HURT) anyhow it WORKED, but I still NEVER want to do it again, but since it's the 3^rd time I have dealt with major constipation and last time it was bad before but this time I had not been on pain meds so this time I really don't know.

I am glad to be home though. Sleep with my own stuff. Sounds and we will be doing our own errands. I missed being home.

Argh

2011-03-28T01:10:00.001-04:00

OK, I am officially exasperated. My head is MEAN!!

I Figured I would get a few good days from my nerve block, uhm, less than 2, but I didn't have high hopes of that working…my pressure is obviously high though because the last two days my vision has been blurring and I have had to have my screen magnified to READ. Even then sometimes it would blur out.

My nausea has been quite a bit worse as well. Of course I am nearly out of BOTH the zofran AND the reglan the two meds that helped with my nausea.

I have been keeping myself busy working on the IH prayer list with Brooke, on Facebook, this gives me great joy, I love praying for the people as I do the list, and it really gives me something to look forward to doing. Its very important to me, and I am so glad she asked me to be a part of it.

Today I worked hard around the house, I folded 4 baskets of laundry, washed a load of dishes and made dinner, for me that is more than I ever get done, and my am I paying for it, my whole body is shaking. I finished almost 3 hours ago and my body is still not happy with me. I will be fine, but it's amazing how unhappy a weak body can be.

Well what do I know???

2011-03-26T01:42:00.001-04:00

Is it sad to say the answer is NOT MUCH?

My last post was before I saw Dr. McIntosh my surgeon who took out my GallBladder…well, He is Not sure what is causing my nausea, I see him again April 18^th We will decide what to do based off of if the nausea has improved or not by then…so far, lets just say, it has NOT.

He however decided that he would get hurt, so any of my friends who DO read my blog can keep him in your prayers, and all of his patients for patience, because they will need it, he broke his ankle and will be out of the OR for a minimum of the remainder of March and ALL of April to allow him healing time, he has pins in his ankle and everything. Poor guy is using a knee scooter to get around, its not easy on him and I am sure its not going to be easy to get back to doing his job the way he is USED to doing it either. This is not his Ideal way of doing things. He is still amazing and I feel truly blessed that I was referred to him.

On Tuesday…I saw Dr. Rossi, that appointment lasted over 45 minutes. Lets just say I walked out with a follow up in June, a script for an EEG, she also wants to do an ambulatory EEG if the 1hour one at the office does not show anything, upped Amitriptilyne and A REFERRAL to University of Michigan Headache pain management Center Dr. Cooper, AHHHH, I am a cross between Nervous and excited.

On one hand, seeing Dr. Cooper means I will be seeing one of the BEST in Michigan for headaches, on the Other, it means, she can NOT work with getting my head under control. She also did an Occipital Nerve Block to try to work on the Nerve pain in the back of my neck, it took about 18 hours to kick in, and lasted about 18 hours, but it did actually knock my pain down about 40% for that 18 hours, in my neck, so the two shots were worth it. Not comfortable or fun, but when you have had zero relief at all in weeks and you keep having to re-evaluate where TEN is, its really hard.

I love her to pieces though because she understands that. She gets me, she knows I am her most complicated patient with IH, and its ok…she is going to learn how to deal with this, and be able to know what to do the next time it comes around.

♥

When is enough enough?

2011-03-12T00:25:00.001-05:00

Well let me see, in the last what 2 weeks since my post we have had a TON of stuff happen.

Chris officially did drop out of the Michigan Works work first program in favor of actually LOOKING for a job that fits his schedule (not to mention the price of gas hit $3.57 a gallon, so we cannot afford for him to be out searching for jobs in person…especially when they tell you go apply online anyhow)

We are applying for subsidized housing, it's not going to be comfortable, it will be small but we will do what it takes to make this WORK for us. Right now it is more important to be together as a family than to worry about space issues.

I had the Implanon placed on March 1^st, my arm is still bruised and a bit sore, I also had another injection for the plantar fasciitis this is the second one, he used a stronger steroid this time, its 2 weeks and it still hurts, but not near as bad and it took close to a week or so before it started bothering me again, his next attempt will be with a cold laser, whatever that means.

On March 2^nd, I had my gallbladder out, I had NO COMPLICATIONS with the surgery itself, BUT, I did have issues with pain management and coming out of anesthesia, and had to stay overnight because my body refused to cooperate

When I walked the halls both the night of surgery and the 3 tries on Thursday I had massive issues with dizziness to the point where my telemetry unit set off the monitors and nurses were called, my oxygen would drop and I was having a REALLY hard time.

I am still getting the bad dizzy spells, and now my headaches are totally and completely out of control as well.

I see Dr. McIntosh on Thursday next week and am hoping to find out if the nausea I am still having is due to the gallbladder or something else.

I know he won't have answers for my head. Dr. Rossi, who I see on the 22^nd will have to deal with that. But, I have hit my break point, I cant handle any more right now.

I have been SO bad about keeping up

2011-02-25T19:31:00.001-05:00

Oh my goodness this has been a Chaotic couple of weeks. Our finances have been the Pits, and when I say the pits, let me put it this way, Chris's unemployment stopped in November so we have been surviving off of my disability, $700 a month and our Lot rent is $468 and our Mortgage is $169 you do the math to figure out the rest of the bills…and YES we are responsible for Gas, Electric, Phone, internet, Car insurance, fuel for the car, etc, plus I have had bukus of doctor appointments, including my surgical follow up and a stress test.

Needless to say, it has been VERY VERY stressful. I attempted to apply for aid, but its not going to work, they want Chris to do way more than what is feasible with me being so sick I have been doing much worse due to the stress, and they are expecting him to practically quit school only allowing him 4 of the 18 hours school says he NEEDS for study time plus seat time, then they expect him to "volunteer" for 26 hours plus job search at jobs that are NOT available…He has been job hunting for the last 2 and a half years, there is not 26 hours of jobs available in our county per week. We found 6 worth applying for, he is not going to apply for things he is not qualified for in any way, and he is not going to apply for stuff that he has already applied for…needless to say, He has no experience in a lot of things, and where his skill set is he is applying…but for what the state was going to be giving us to help, they were not going to be giving us $3 an hour for him to do this "work search" and he was losing a lot anyhow.

Plus I have more doctors appointments next week as well Those cost him hours, I Need him to help with my being sick I have been having more dizzy spells and such and am having my gallbladder out on Wednesday…but feel so nervous and excited too. I have been so sick lately that I just hope it helps.

Lately my head has been acting up more than Humanly imaginable, and my dizziness and nausea has been ridiculous, I have had trouble seeing and just been totally having a lot of difficulty but I am not sure if its worse cause of the stress or because my pressure is high.

I saw Dr. Masters yesterday…lets just say I now know WHY the ablation didn't happen, I am not upset anymore, she tried for over an hour, the instrument that gets the balloon up to the uterus was too short and she tried several different tips. Basically I have a very HIGH uterus. We are going to Try an Implanon, I have to call Jenny on Monday afternoon to make sure they have one coming in or in the office… the Implanon can have a variety of responses, my bleeding can be lighter, stop completely, or heavier, if and only if it gets heavier, we will be discussing going to a different specialist for a robotic hysterectomy, because I can not do more hormones and this has been ongoing since I was 13, I would have been more than happy to have had one done from the get go, but, she wanted to wait on that as a last resort.

Well, I am totally overwhelmed I am Glad God is in control, because if he wasn't, life wouldn't work, no matter what. Praying Chris gets one of the jobs he is applying for and God provides the money we need to get us through.

2011-02-12T14:15:00.000-05:00

So many days I am in a hurry and not thinking about what others go through, when I watched this I about cried, for many reasons, but the biggest one...I have walked through those shoes, I have felt like those people he is looking at, many of them... we all need to THINK of what others may be going through before we jump to conclusions.

YouTube - Get Service

Half of a surgery? And RARE DISEASE DAY is coming up

2011-02-11T23:41:00.001-05:00

Well, I had a D&C and Hysteroscopy today, my ablation was not able to be done, my uterus is enlarged and I have to discuss more at the follow up on the 24^th.

Dr. Masters did tell me about it and explain it but I had just woke up from the anesthesia so I don't remember much of what she said and to be honest, lol Chris didn't understand what she said, so I will talk to her in 13 days and figure it out then.

On to Rare Disease Day

On February 28, 2011 We are celebrating a Day I wish we didn't need. Rare Disease day is very important its recognizing those of us who have things wrong that others do not know about, I have 2 potentially 3 very rare diseases. These things affect EVERY bit of my daily life and truly alter how I do things, how I function, and choices I make.

When I say I have Chiari, Intracranial Malformation, or Orthostatic Hypertension, People look at me like I have a 3^rd eyeball. They do not know what they are (now people DO know A lot about orthostatic HYPOtension, or low blood pressure upon standing, but mine doesn't drop, it goes WAY up…way way up…needless to say, I guess I just like to be unique.

Today prior to my surgery Dr. Masters walked in and the first thing she says is she talked to Dr. Dobrin today and she was talking about how she wanted the stress test before my surgery with Dr. McIntosh in March…Hello!!! I am the topic of conversation, my doctors know me, yes, but to discuss me in regards to ANOTHER procedure, OH MY Goodness, ya, I love that I am that popular, but it kind of worries me too, because it means that they are looking a lot deeper into my case…

Oh well, it will all be ok.

Well, we have dates, yes, you read right DATES TWO different dates

2011-02-04T01:16:00.001-05:00

I am still having some of the same surgeries done, but I am scrapping the tubal for now, I did some more homework on the Implanon and Chris and I have been abstaining anyhow, plus, well, long story short, I am not in the mood to wait three months to get my gallbladder out, it's causing WAY too much pain in the here and now.

So…Monday morning when Linda, Dr. McIntosh's scheduler called me to let me know what was what…I was not too thrilled and she told me to call Carol, Dr. Masters' scheduler…which I had to wait til I got home to do, as I was out when she called, basically, Dr. Masters is at Beaumont every other Friday and Dr. McIntosh is there only one Friday a month, but EVERY Tuesday, Wednesday and alternating Thursday mornings. Friday is his surgical day elsewhere (he also does surgery one day a month at Detroit Receiving and St. Johns, and alternating Thursday mornings he is at the outpatient center. (He is chief of surgery at Beaumont where I will be having mine done though)

Anyhow…His Friday and Her Friday did not come together til the END of April, Uhm, I know that COULD work, but not for me, especially since I had been spotting AGAIN, this on again off again stuff is getting old…and well the stomach not tolerating any food without two anti-nausea meds is getting even older.

So, I cancelled the tubes, we will TRY the Implanon, if it doesn't agree with my liver levels (my levels are currently behaving) and My body seems to like the low levels of progesterone at all times, so…I am willing to give it a go, it can be removed if it doesn't agree with me, and I trust my doctor, and she works really closely with my other docs too, so if it doesn't go well, There is my PCP and Neuro RIGHT THERE, and when I say right there, they are in the same office…but we will be having the Ablation done with a D&C and Hysteroscopy done Next Friday (unless her earlier case gets me bumped) February 11^th.

THEN, after a 3 ½ hour clearance appointment today with Dr. Dobrin, have I mentioned how much I LOVE my primary care doc? I have my tentative clearance for my gallbladder on March 2^nd with Dr. McIntosh…now Why was my clearance appointment so long? I was asking myself the same question, my primary doc did a lot of things my old doc NEVER did. He said he should or could or would do them, but never did. She did them. She wanted a chest x-ray, EKG, pulmonary function test, Lab work, she went over the results before I was allowed to leave…since my white count was high, she wanted a urinalysis, and MORE blood work (which unfortunately couldn't be drawn off what she already had had drawn, so they had to poke me again, not a fun thing for someone who only has ONE good vein, but the tech got it first poke TWICE)

Now, I tell you, I love my PCP. She is VERY thorough. She saw I was in pain, she went over my entire history, my med changes since our last visit, ironically I saw her December 17^th, December 23^rd, and actually had med changes to report from a little over ONE month since our last meeting (I see her way more often than I have ever seen any primary doc, and I see a gazillion specialists as well)

I saw my Podiatrist yesterday, My broken ankle is officially Healed (sort of) the bones are almost consolidated, however the ligaments and tendons will probably give me grief for a LONG time, he said it could take close to a year for them to heal properly. So now we are back to treating the plantar fasciitis we shall see how that goes, right now my whole body hurts, so I am just resting, but the legs need to adjust to being done with the boot too.

Then today I could have danced a jig and kissed my endocrinologist. Yes, he had VERY good news. Ok, my diabetes isn't gone, but it's VERY VERY well controlled, as in Uhm, I can cut down my Metformin well controlled. My HbA1C was 5.1, Very GOOD, My Cholesterol and Triglyceride numbers were all pretty good too, the Bad Cholesterol would be good if it wasn't for the diabetes, Grr, so if it wasn't for me being on meds to control my sugars L All of My Cholesterol numbers would be what he calls good. He is not putting me on new meds for them though because my liver is a big concern even though my liver function tests he runs showed good…but with my other liver issue, which I did let him know about Dr. Wille's findings (he likes me seeing Dr. Wille) he does not want to cause any more damage to my liver from medications.

It is so funny hearing over and over again, with that, you know you should not drink any alcohol or smoke, and I just giggle, I have had a grand total of TWO, yes, TWO alcoholic drinks in my life, I am 34, both of them were strawberry daiquiri's one of them I was under aged and it was a goof up and I had two sips and had it sent back to get the virgin kind, the second I was 25 and had just lost our first child, after the miscarriage we went out and I was so depressed Chris took me to Karaoke night to try to cheer me up, it didn't work. I saw too many pregnant people drinking and that made me mad. Ironically we were pregnant a few months later and now have a beautiful 8 year old one and ONLY child, and I am completely happy with her being an only child…the smoking I have never and will never try, I don't even like being around second hand smoke.

Off to the OR we go, just don’t know when yet

2011-01-26T18:46:00.001-05:00

On Monday I spent the day seeing doctors, I started off with my GYN and an ultrasound in the morning. I have been there every 1-2 months since August. It's a good thing I like her. Well we have been discussing an endometrial ablation to deal with abnormal bleeding since the beginning. She also wants to do a D&C and we were debating on additional birth control since the ablation does not guaranty sterility we had discussed the Implanon progestin only implant (which interacts with a few of my meds and I didn't like the idea of) and a tubal ligation which I had requested, she hesitated since its more invasive, but that kind of changed when she found out I was going to be seeing a general surgeon in the afternoon to see about removing my gallbladder.

She felt that working with the general surgeon and using the same initial ports as he uses she should be able to do the tubal at the same time he does the Gallbladder and then she will do the D&C and ablation after.

When I saw the general surgeon later Monday afternoon he hesitated, but felt the risk of 2 anesthesias were greater than the risk of infection. So now they are coordinating and I wait as they are scheduling to get me scheduled and taken care of. I should be ready to go soon. I am a cross between nervous and excited. Hopefully my pain will go away. Right now, I am feeling totally run down, and I have lots going on super stressed with lots of stress going on.

Good News?

2011-01-19T22:16:00.001-05:00

Let me begin here, today I saw My Podiatrist, He is AMAZING. I love having doctors that listen. Two weeks ago when I went in I had a second break in my ankle, I came home depressed and in tears, it had been 5 weeks and I was expecting to move into an air cast because that's what he had said he expected before. After all it was just a TINY break and in the first place and was healing after two weeks in the boot.

Well when it wasn't I was just devastated, I had gotten so much bad news all at once, I couldn't handle it and was crushed, but I wore the boot for 2 more weeks and this time he had just said he was 95% sure it we would be moving to the air cast this week, guess what, I didn't go in expecting anything, lol, so I wasn't as disappointed either.

He didn't even examine it til we X-Rayed it…No New Breaks, YAY!!! And It IS healing again, VERY SLOWLY, But it is healing. But it was excruciatingly painful today, so he did an injection into the joint to numb it to make it feel better for a while (not long enough, lol, but a while) I love that he listens though.

I left his office and went to the hospital to have my brain MRI done, I prayed before I went in about the IV placement. After Thursdays 7 pokes to get an IV we didn't need I was a bit stressed over this IV. So I prayed and Prayed, Guess what, ONE POKE, I could have hugged the MRI tech. However I am starting to have some irritation to the TAPES they are using, The clear tapes to hold IV's in place have left marks the last two or three times, they think I may be developing an allergy to the tape, Arg, but oh well, if that's all, it's the least of my concerns.

For my few readers: Please Keep Several of my friends in your prayers.

Bobbi is still in the hospital after having a serious reaction to MRI contrast on Monday.

Christy had surgery on her shunt again, hopefully this one lasts a LONG time.

Brooke got some very bad news this morning from her doctor.

Angie's son Noah is very sick and they need lots of prayer.

Little Noah is in the Hospital again in Greenville.

Jen's friend Jeff was killed in a car accident on Monday, He meant a lot to their small community, and this was just one year after he survived another major accident.

Well Today was an INTERESTING day

2011-01-13T20:15:00.001-05:00

Sorry about the delays in updates, it has been a hectic few weeks.

Today I had my Tilt Table Test. Let me just state, it was NOT fun.

First, I had a hard time finding a handicap parking spot so I was running late, but I got there the technician who did my Dubutomine stress test this past fall was there and he did this test too, having a familiar face in the room did not make it easier, lol.

They set up the EKG, Blood Pressure cuff, and Pulse Ox, and took a base reading sitting, Boring…

THEN, tried to start an IV, Poke 1 try, Poke 2 tries Poke 3 tries, Call in someone else, Poke, Nope, call anesthesia, lol, you getting the picture, they use Lidocaine, Poke, what are we up to? Uhm yes, 5, 6, Ahh, here we go, 7 tries, and she doesn't think this is going to hold, but that's ok…guess what, all that almost an hour to get a VEIN and we didn't need it…

We begin with a resting laying flat before the tilt reading and here we go, Boring…Blood pressure NORMAL, Heartrate, Looking Good, Pulse Ox, Looking REALLY good…

Uh OH…Hmm

Then they strap me to the table and tilt it 75*

Within 5 minutes, my Blood pressure went through the ROOF, she didn't give me numbers, but my Blood pressure and Heartrate skyrocketed, the room started spinning and my legs started feeling like jello, I was Nauseas and felt like I could just puke everywhere, if I didn't have two rare brain diseases, I could have said this was the worst I had felt, but that would have been a bit much, she said to go with it, but I couldn't help but to breath through it…natural instinct, I guess.

I don't like puking, lol

My blood pressure was really really high and I felt just horrid, I was shaky and my vision was blurred, I guess that's why I needed a driver back home. I was a mess, I am still a bit shakey.

This was a very interesting day…I do not want to go through it again…this isn't fun and I will know in a few days if its something we are going to be investigating further or just what we are doing.

Ugg, still not ready to share cause well…

2011-01-09T03:02:00.001-05:00

Let's start here…

I did see Dr. Wille on December 29^th. He did confirm my blood results, and no, I did not have to bring them up, he did. However, since I have never had any of the risk factors, he sent me to the lab to have what felt like a million vials of blood drawn for more detailed lab work to find out more answers. I will find out more when he knows more or on February 17^th, whichever he feels is more important, probably in February since this isn't going to kill me between now and then, Which makes me feel a LITTLE better at least. We probably wont be starting treatment right away anyhow since I have a lot of other stuff going on so I am guessing he will be watching it really close til I do decide to treat it, IF I decide to treat it…we will cross that bridge when we get there. I may have to wait 6 months to treat it anyhow, or so…we shall see, like I said we will cross THAT bridge when we get there.

On the other hand, I have many more bridges that need crossing now. Like my wonderful non working gallbladder. Monday I am calling Dr. McIntosh and scheduling the appointment with him for sometime AFTER the 17^th, if it chooses to start behaving I can cancel it (but so far my heating pad and I have become virtually inseparable, more importantly, if I need to get medical records from the hospital I will be there on the 13^th)

I saw Dr. Kachan my foot doctor about my wonderful broken ankle, I was looking so forward to getting a brace instead of this lovely CAM boot on the 5^th of January, BUT, when they did my XRays, I cried, they found a second break, yes, I cried…That's not what he was supposed to tell me….it was supposed to have gotten better NOT worse. I had been in the boot 4 weeks, it had improved the first time, so the second time I was expecting to be out of the boot, but NOPE, I get it another 2 weeks, 6 full weeks in the boot, Not a happy girl.

Then, on the 6^th I saw my Neurologist, Dr. Rossi, about the falls, the headaches, the dizziness, oh and everything else, she is a WONDERFUL doc, I would highly recommend her to anyone in my area, she is the BEST. Anyhow, she isn't happy about the falls and she thinks they could be related to my heart and my brain together, so she is sending me for a tilt table torture test (she called it a torture test, not me) because its supposed to reproduce the dizziness and possibly the faints, or near faints I have… now doesn't that just sound fun, they do this in the hospital while measuring my heart rate, blood pressure, and oxygen at a constant rate, like minute by minute or something like that, to watch for it to drop before I do…and watch for the symptoms too…possibly using drugs to induce them if they don't start on their own… they lay you down, strap you to a table and stand you up, sounds like a load of fun, mind you I get nauseas and weak and floppy BEFORE I fall…hence the straps (and hopefully a barf bucket)

Then I get an MRI of my Brain, to see if its malfunctioning at its greatest, I will feel like crap and get to lay in a tube for another hour, I will probably need a nap while in there since I will feel even worse.

At least she upped my meds, and gave me a new pain med to try since the toradol pretty much quit on me. Like I said I LOVE her to pieces, she listens, she is young and just an amazing doc. I just wish I had found her a while ago, couldn't have found her when I first got sick, she hadn't graduated yet, from college, forget Medical school, she is younger than I am, but that's ok, means I get to keep her longer.

Well, my next set of appointments are: Tilt Table and MRI January 13^th, Dr. Mardelli Janurary 14^th, Dr. Kachan January 19^th, and Dr. Masters January 24^th since I probably wont update before I have seen any of them, I will probably be seeing Dr. McIntosh in there somewhere, but not sure when. Hmm, I think I have an M theme with Doctors too, cause Dr. Dobrin is a hyphenated name that starts with an M, lol strange

Long time no Blog…Merry Christmas

2010-12-24T23:33:00.001-05:00

Well its been a while since I wrote last but its not cause things started going well. I wish that was the case.

I have been BUSY.

We got a lot of school done with Lauren and were making progress, so you would figure I would have to have something go wrong.

We had some financial things happen, our unemployment ended in November, but I didn't tell anyone except a really good facebook friend when exactly it was ending, I have barely been to church since smells and noise are making me really sick, so I really don't know other than I prayed for God to provide, and Church called and offered some gift cards to a local store to help with some of the cash needs.

Then as my Ankle was healing I thought I was losing it, my stomach started getting really really sick, I wasn't sure what it was, last week, December 16, 2010, I woke up very ill, my head had been increasing exponentially, my ankle hurt really bad, (I know a break can cause nausea to be really bad) and my stomach was in Really bad pain, so I was totally lost, I ended up going to see my doctor, when I couldn't keep even water down. She wanted me admitted, So she gave me a shot for pain and a shot for nausea, and sent me to the hospital in the morning, I went to the ER Friday morning, I really wish I hadn't waited though…the ER doc didn't believe I was as sick as I was, and I spent THREE days in the Observation unit.

I had an Abdominal CT scan, slightly abnormal (showed something with my gall bladder) Had an abdominal Ultrasound, no gall stones, but it showed a polyp in my gall bladder, then they sent me to the Observation unit for the night NPO til I saw the GI specialist… I also saw the on call neuro, whom I am ignoring until I see Dr. Rossi on January 6^th since she made NO sense whatsoever. The GI's PA came in immediately after the neuro left, I don't remember her name, but she examined me, asked a lot and I mean A LOT of questions, and pushed all over my abdomen, my belly wasn't happy to begin with, and her pushing on it really really hurt. It was the first time we realized that the pain wasn't really as localized as I originally thought, which was both a good thing and a bad thing. The ER doc didn't even notice that it was further because he didn't really check around. (My doc was very upset about the ER's care, she said if I had been discharged within 24-48 hours, she wouldn't have been so upset, but 3 days I should have been on a floor)

Well she called Dr. Wille, the Gastroenterologist on call, and he wanted to do an EGD, or Upper Endoscopy, I don't remember anything beyond the prep, and him telling me he found gastritis, and that he would talk to me in the morning…he then had me try a liquid diet to eat again.

When I saw Dr. Wille Sunday morning, he was still concerned about the intense pain, it was coming and going, not constant but intense on and off, especially after meals, VERY Hot, Very cold, I paid dearly for my first taste of real food, a popsicle (but my dry mouth didn't care) room temp was the best but still coming back, so I am on Reglan before meals, Zofran and Phenegran alternating as needed for other nausea…Prilocec before meals, and I have been taken off my lasix, Dr. Dobrin put me back on 20mg since I had upped it to 80 and they pulled me off completely.

He ordered a HIDA scan on Sunday, I was told it was normal in the hospital, by the nurses, but Dr. Dobrin said it showed Biliary Dyskinesia, and the labs showed something else, I have to talk to Dr. Wille about both Dec 29^th as he will be the one primarily treating both. She was happy I liked him because she thought the follow up with him was very important. He had already left for the day by the time I got back from the HIDA scan, it was almost 6pm.

I came home on Monday, still not eating still feeling great but feeling much better than Thursday. When I started eating real food again, I started having trouble again, I felt so discouraged, but we will keep learning how to do things.

This new problem was not part of my plan, I am used to my head pain, but the belly pain was way more than I was able to deal with, and not being able to keep things down made my head worse, on top of everything else, NOW…I have my wonderful toradol staring at me and I cant take anything for my pain because it will aggravate my stomach which we have NO idea what caused it to be inflamed and swollen Gastritis wasn't my plan. Biliary Dyskinesia, wasn't my plan, and the blood results, were DEFINITELY not part of my plan, but God has a bigger plan, and even though right now, I can NOT see it, he is still in control of this mess.

My Brain is causing me issues, If it worked right, I would not NEED to be writing this blog today

2010-12-11T01:20:00.001-05:00

This is getting ridiculous. I wasn't bothered by IH affecting JUST my life, but what seeing it interrupt so many right now is getting old.

I know I have neglected my blog this month, it has been a LONG rough month.

I don't even recall the last entry, sad as that may sound, I do know I saw my Neuro, we upped my Lasix to 60 then 80mgs a day, and changed my anti nauseas to Phenegran the pharmacy and I had a good go round I just got those today almost 3 weeks later THEN, lol, I saw my Gyn, we discussed the Therachoice Endometrial Ablation to stop my obnoxious messed up menstrual cycles.

Then I had a mini black out the drop attacks I have at home all the time IN HER OFFICE That was kinda scary, I thought, yes I said THOUGHT, I sprained my ankle, LOL, The emphasis being on the word thought. Today I had my follow up for my plantar faciitis with my podiatrist I happened to mention the ankle twist to him, Hmmm, he checked it, thinking I was right it was just a sprain but x-rayed to be sure, we were both kinda stunned to learn I chipped the fibula and now am an a stupid CAM boot for 6-8 weeks for it to heal, which means, HAHA, I can't wear it to drive, so I am changing it a zillion times in and out, if I am going to be ON it.

My Brain is such a pain in the butt, If it worked I wouldn't have blacked out for that third of a second and lost my balance to twist and break my ankle to need all this.

He said and I thought he was over reacting…it will make your left leg hurt more, your back and neck hurt too, and you may notice pain in other places because of where the break is, and wearing the boot will hinder your balance even more…I was thinking, he is exaggerating so if it bugs me a little, I wouldn't be surprised.

Making dinner, I literally came to the couch and cried for 30 minutes, the pain wearing the boot was unbearable, I think I would rather deal with the break and walking on it barefoot, or the pain of reinjuring it over and over again, seeing how it didn't hurt for a few hours after. My back had been bothering me, but the boot made the back, neck, head and left leg literally unbearable.

Happy Thanksgiving

2010-11-25T19:38:00.001-05:00

Thanksgiving dinner had some alterations to my usual this year. I only cooked a Turkey breast since I can no longer lift a whole turkey. This will actually be good in more ways than one since it means we won't be throwing out a lot of dark meat that no one likes.

We decided not to go to my in-laws after some, let's call them issues, in September. I didn't want to deal with the hassle and well, no offense, but I have always had Thanksgiving at my house and they did it on Friday til this year, I wasn't giving up my tradition cause they wanted a change. I am SO glad I didn't back down this year. I was so sick yesterday and today I didn't feel well most of the day, so being around people and smells would have not gone over well, my family is one thing, they are so used to me being sick, but others, well they don't get it despite saying how much they understand it.

I also made REAL mashed potatoes, Sweet Potato Casserole, Garlic Green Beans, Dressing, and Cranberry Relish. We forgot the rolls, oops, I guess they will be buns for something.

My pain levels have been fairly steady, I am dealing with a lot of insomnia, my CPAP was upped to 15, not much change, but I am still not sleeping much.

My neurologist changed my Lasix at this appointment, we upped it to 40mg in the morning and 20mg at night, keeping all my other meds the same. I have to call her if I up it to 40 am and PM but I am not to do that for at least 2-3 weeks. She also changed my anti-emetic to Phenergan to see if that helps better than the zofran did (it wasn't working very well, the 8mg worked a little better but, not great)

As for the Victoza, I am now on the 1.8mg the injections hurt a bit more, and they make me shaky for a few minutes, but, no other side effects except continued weight loss. It's a SLOW process though, but it came on slowly too, so I am ok with that. The support board said the average was 10lbs in 2 months, so being down over 7lbs in less than 3 weeks I am happy. My appetite has gone down and I am learning to control portions better (today is a little bit different though)

I have counted my blessings over on Facebook, I am so grateful for my friends there, IH and Chiari have been a very big challenge for me, and not going through it alone has made my life so much easier.

An interesting Week…started again

2010-11-16T14:39:00.001-05:00

Well, I survived the first week of Physical Therapy, I have to admit Traction REALLY helped A LOT, I was surprised.

When I finished Thursday, I came home feeling pretty positive and encouraged, I felt like I could rule the world. Then Friday happened. I went to see Dr. Kachan, he went over my EMG results, I was a fully prepared for those results, I knew they were normal, or so I thought…The Tarsal Tunnel was normal…but there was NO response at the knee, I have to discuss this with Dr. Rossi since Dr. Young did the EMG I do not understand why I had No response at the knee. She didn't check beyond the foot and ankle for the tibial nerve, so I was not aware of the knee's lack of response. Dr. Kachan ended up doing a corticosteroid shot for Plantar Fasciitis in my heel, I thought I was going to DIE, I have had the steroid shots in my wrist, ankle, and my knee before, but this one was definitely the most painful I have EVER experienced…and unlike the others, it did not get better within hours like the others, this one took ALL day Friday and most of Saturday. I was off of my feet until late Saturday because it hurt so bad, it did give me the ability to wiggle my toes though so it did improve it. Although the relief didn't last long.

I also started the Victoza last week, I took the week of the 0.6mg, then I moved up on Monday to the 1.2mg, I noticed today that I could not finish a burger, I was VERY full and I haven't even taken it yet today. In the first 4 doses I lost 6lbs. I will be weighed again on the 30^th, I wonder what the results will be…The nausea isn't as bad as reviewers seem to say. Probably cause I am used to it from my other meds.

We are looking for a new place to live, Unemployment is officially over, Trusting God to provide for our needs, its not an easy task by any means, my disability is NOT enough to cover our bills. I am still very sick regularly, I get a few good days every now and again, but not enough where I could go back to work, today I noticed how bad my eyes are, and I have to admit, it seriously depressed me. I did see the opthamologist last week too, Dr. Simone shared that the reason I don't have papilledema anymore is because my eyes are atrophied so they can not swell, I almost cried, my vision is becoming PERMANENTLY damaged. Its not fair…and I don't do well with that.

Its affecting Lauren, Chris, and even my cats.

Yesterday after physical therapy, I felt good for about an hour, then I hurt ridiculously bad, I don't think it had anything to do with therapy though, I think it was just a bad pain day…because I felt great AT therapy…except my body didn't like leaving…its so weird.

Tomorrow I have an ultrasound and Thursday is another Therapy day…Then some day this week I should be hearing from Beaumont Home Medical to get my machine reset. I wonder what to, my sleep study last week yielded a reset, but I don't know what to.

And We start Anew

2010-11-08T21:37:00.001-05:00

Today was busy, Tomorrow will be BUSIER, Wednesday I will sleep ALL DAY, lol, and Thursday I will be TIRED, Friday will be calm after my doctor's appointment.

A glimpse into my week?

Nah, you don't really want that lol.

Ok, well today I started Physical therapy, my poor Physical therapist looked at my script and said BUT there are SIX body parts listed here…uhm yeah….I have a lot going on…we are starting with the neck and working our way down, kinda hoping the neck will fix some of the lower ones by itself.

She agreed.

We started with just heat today, and a list of exercises to do at home, we will probably do traction and massage J I am A wee bit excited about that it felt so good when she found some muscles that HURT all the way down by back and a few that when she pulled on the traction felt GOOD all the way up.

Today also started the Victoza, I was seriously surprised the injection didn't hurt. I was totally prepared for it to hurt, but it didn't. I have 7 days on 0.6, then 7 days at 1.2 then I have to call the office, I will call them to verify this week to reverify his dose anyhow, but I will call AFTER I get the call from the doctors office tomorrow.

Today while I was in PT I got a call from my PCPs office to call and schedule a follow up (I have one set for February, so I am a bit confused, or to return her call, so I returned her call, I have NO clue what is going on, I was JUST there a couple weeks ago, and just in my endocrinologists Nov 2nd)

Needless to say I was a bit confused about this call. I had a hard time with my prescription transfer today too, so I have had a rough day.

Tomorrow I have Physical Therapy at 4:30pm, Sleep Study at 8:30pm Chris will have dinner ready when I get home, THANK you Crock POT. Lauren will do school in the MORNING but she will have all afternoon FREE

Wednesday, I am NAPPING…LOL, Lauren will do school in the afternoon, but she will have the morning free, totally opposite of our NORMAL schedule

Thursday, I have an Eye appointment at 8am, and Lauren will have school MID day, lol then I have Physical Therapy at 4:30…

Thank God for HOMESCHOOLING

Friday, I have an 8:45am Podiatry appointment and am CLEAR sailing for the rest of the day, Lauren is off school, if she has completed all of her weeks assignments. I love teaching through the summer for 4 day weeks and having the rare 5 day week…and so does she.

Saturday and Sunday…I am planning on having a GOOD weekend, and praying to feel well enough to get to church again it felt so nice to be there this past week…its been so long.

Well what do we have here?

2010-11-04T21:20:00.001-04:00

Well lets see…yesterday I had my EMG, it was NORMAL, Can we say HAPPY? I can. It was an interesting day. I drove out to Rochester to the doctor's office, signed in, was asked which doctor, answer, Dr. Rossi, receptionist says, but you aren't seeing the doctor RIGHT? She isn't here today…Hmm, No she is PERFORMING the EMG… HA, Uhm, She isn't here..Uhm, Uhm…they look it up, I am scheduled with Dr. Young, who do you normally see…Dr. Rossi…I think I just said that…I am growing a cross between concerned, angry and frustrated. I just drove 45 minutes to get here, I have waited 6 weeks for this appointment. The other receptionist that I usually deal with says USUALLY we would have you reschedule but asks me if I mind if Dr. Young does it…I shrug my shoulders, I have seen them both, I met them both in the hospital, I have actually seen MORE of Dr. Young than Dr. Rossi, since I Spent 4 days in the Hospital, and I saw Dr. Young Thursday AND Friday, and Dr. Rossi Just on Wednesday. Now I can officially say I have seen Dr. Young more, lol, again. Dr. Young didn't mind doing the EMG so long as I was ok with her doing it… She gave me the results (she wasn't supposed to…since she isn't my doc…but I AM NOT COMPLAINING)

THEY WERE NORMAL, I will shout it from the rooftops…Its not Tarsal Tunnel So my foot and ankle pain isn't due to Tibial nerve damage!!!!!

Today I was researching the Victoza…Its an interesting medicine. I haven't started it yet, I did get 10 days worth of 1500 calorie meal plans made up so I now know WHEN I am goin to take it, I will have to call the office when I get to the last of the 3 does, or if I have any questions on the med, I will be calling the office next week to find out exactly how long before he wants me to change doses because I don't see more directions in the box, and my memory isn't that great, I know there isn't enough to make it to the next appointment either…so I will definitely have to call and ask.

ARG…

2010-11-02T16:25:00.001-04:00

Diabetes STINKS!!! I have been dealing with this since Last February, but today it hit me really hard. After seeing the endocringologst this morning I was expecting to get my meds cut, my sugars have been really good, I haven't had a high number in a long time, they have been staying in the low 100's but now he is concerned about my liver enzymes and is putting me on Victoza as well as doubling my Metformin dose, I was so not happy about the injectables… That was NOT what I had anticipated. God must have bigger plans.

Feeling Very Blessed

2010-10-28T18:54:00.001-04:00

Today was my follow up with Dr. Dobrin I have seen her several times since August, but today was really pivotal in how I really felt about having a Primary Care doctor. Up until just before I won my disability, I hadn't had a primary doc, I had PPO insurance and enough specialists to make up for not having one, I had a specialist for just about everything one could imagine, and I really didn't need someone to coordinate my care, my brain worked well enough to organize it.

When I applied for disability I needed a primary doctor because I thought I was going to wind up on SSI not SSD, which would have given me Medicaid that was an HMO plan, not Medicare and Straight Medicaid, like I do have, so my previous PCP did next to nothing for me, and when I say next to nothing, I mean, he basically did what I asked him to or what my other doctors requested him to do, NOTHING proactive or that required HIM to make a medical decision affecting my care WHATSOEVER.

So when I got sick in August, we decided we were going to a different hospital. My Neurologist had given up, my pulmonologist had all but given up, and I was left to suffer alone. So off to Beaumont Chris and I went. We knew right away it was the right choice, the hospital staff took great care of me, didn't question me and wanted me to see THEIR docs, I got a neurology referral, and when my sugars went wacky I was referred to a new endocrinologist (who also wasn't doing her job). When I got out they wanted me to go see a primary care doc, I wasn't going back to my doc, he had already failed me, so my nurse whom I ever so lovingly cried on for over an hour the day before told me to call and how to get a new primary doc with them, I prayed, God knew I needed a doc that was MEANT for me…I have LOTS of doctors, I absolutely LOVED the Neurologist I was given, and when I called the referral service they asked my insurance and I told them what I had, asked where I wanted to go, There are NO Beaumont docs where I live, so I mentioned my Neurologist was on Rochester Road, That's ALL I said… So she gave me this LONG name, its Hyphenated, lol, of Dr. Dobrin (they don't use her WHOLE name, it doesn't fit on her card, lol) and I called and made the appointment, The first appointment took over 3 hours, she was so thorough, I wasn't sure I liked her then…she kinda scared me, it was extreme to extreme.

I saw her again, a few weeks later, she reran the blood work, and checked other things, same routine, but shorter appointment, still very thorough, a month later, same routine, shorter appointment, still NO WAIT, but very thorough, this is growing on me, office staff friendly, very efficient…Then Today…hmm, I have had 2 referral appointments and a follow up appointment since I saw her last…so we went over those, All in all, she spent an HOUR with me BEFORE deciding what to do with me.

We re-evaluated some chest/shoulder pain, she thinks it MIGHT be musculoskeletal, so we are going to attempt Physical therapy, We went over my bloodwork, she can't figure out what is up with my liver, she is calling it fatty liver disease, but she is going to assume its just its normal (its not, because it wasn't there in February, but eh whatever, my body has a way about creating new normals when it gets bored)

We discussed the bariatric surgery… she is not pushing me as hard since I was OPEN and Honest about my thoughts, long story short I am just NOT SURE, she said to call her when I am sure, IF I am sure. Then we talked about the Fibromyalgia, Pain, and Neuro stuff…she doesn't like how complicated I am, but is still not giving up on me…she says I need a miracle.

And A New Doc is Met…Hmm? Not sure what I think yet

2010-10-26T00:30:00.001-04:00

Today I met Dr. Mardelli, the new Pulmonologist who will be dealing with my sleep apnea, I am not sure if he will be dealing with ALL of my issues or referring me to another pulmonologist or cardiologist or someone else yet or not, follow up will be determined AFTER my new sleep study on November 9^th. However he was VERY quiet, he Listened, A LOT, he didn't ask many questions, I am not sure if that's a good thing or a bad thing. I know I know a lot of what I am going through and am familiar with the processes, so it was rather strange for him to not ask hardly any questions at all.

He basically went over my meds, my CPAP info, where he got REALLY confused, I have a fixed machine that has been reset several times trying to find an IDEAL pressure setting after an initial titration, (my initial sleep study set me to 19, which the office overruled because it would have shocked my body who was not used to CPAP) I was started at a 12, with a ramp of 6, which I learned to forego really fast cause that was so easy to deal with, then I was bumped up to 17, then down to 7 then up to 19 now down to 14 cause 19 was literally blowing the mask off my face.

I am hoping either they find I need Oxygen so I can get some extra help with breathing so I am not hurting all the time, or he refers me to a cardiologist so we can find out why I am in pain and having this hard of a time ALL the time, I should not be out of breath walking to the bathroom… but we will see. Wait and See. There is always the possibility that they will refer to a regular pulmonologist for continued care as well…but I don't know, and him for the sleep follow ups, which I have NO clue how often they will have me follow up now, I have been followed every 3-6 months for the last 2 years, so this change could be HUGE…Here is hoping.

Tomorrow I am going in for Bloodwork, Its for my endocrinologist, I am having a lot drawn but it's all pretty basic, hoping that when it's done they will find that my kidneys are functioning fine, liver is back to normal (I think he is doing a different liver test) and we shall see where my cholesterol numbers are, they haven't been tested in Uhm, I don't even remember when.

Then I have to see Dr. Dobrin on Thursday Hoping she has nothing but positive for me.

It’s all connected, I always knew it…

2010-10-24T02:53:00.001-04:00

I saw the podiatrist again on Friday, my life is so full of doctors I don't even know if I am coming or going half the time.

This week I have two appointments, then next week I start the list with a bunch more, November will be fun.

Anyhow, I was diagnosed with High Arches, Heel Spurs, and Probable Tarsal Tunnel about a month ago, not a huge deal, or so I thought. I already have Carpal Tunnel, so Tarsal Tunnel is just the Ankle version…except I get the privilege of actually getting an EMG to rule it out this time, yay…probably cause I have so many other things going on.

Well I was looking up "what high arches do" because he changed my arch support from last time to this time (last time I literally lost the shoes the MOMENT I walked in the house EVERY time I walked in) These ones aren't AS bad, but my back was KILLING me all day today since we had to go shopping, and my Headaches were a lot worse, I actually felt like if I could I would need a BODY transplant, my whole body hurts…now, I am not blaming this on the Arch supports, but it led me to want to know what my FEET had to do with all my pain…which was far worse than I am used to today. High Arches, the kind that are Abnormally high like mine, lol, are associated with, lol, of course more frequent injuries, that does explain the 20+ sprains, strains and TWO fractures in 22 years (mind you I didn't start spraining til I was 12, so I had to subtract the first 12 years) BUT, and here is the good part, High Arches are also associated with Neurological Problems…Hmm, I have Intracranial Hypertension (neurological) Chiari malformation (my brain doesn't fit in my head, DEFINITELY neurological) and Sleep Apnea, (pulmonary/neurological since part of it is because my brain forgets to BREATHE)

Hmm, I think I just may have some neurological problems. That about did me in, a health problem that wasn't really a problem, I have had all my life, is associated with neurological deficits.

Then after I got home and got all comfy, my gynecologist office calls, we are waiting on some decisions based on well Aunt Flo, since my endometrial biopsy wasn't conclusive, she offered a D&C with Hysteroscopy, ugg, I will have to wait and see based on IF, I have a period in October, or November, so far, October is a No show, the cramps came, but the visitor, she didn't.

Rollercoaster ride

2010-10-09T02:29:00.001-04:00

What a day it has been…at least I got to see good news today, a good friend of mine with IH has been on Octreotide for the last 3 weeks in Texas, and is seeing progress, for the first time in 11 years her pressures are finally normal. God is Good ALL the time, Brooke is one of the biggest blessings I have had since I have been on Facebook and Intracranial Hypertension is how we met, I wouldn't trade IH for meeting this wonderful woman for anything, she has become one of my closest friends online. I have others, my "peapod" and a few other special friends I have met as well, but Brooke was the first one I became really close to and seeing her finally having success is just HUGE.

As for ME…well, This has been A week…I slept through last weekend, I honestly don't remember it, then I slept through most of Monday too, I got up for my nurse, but apparently she wasn't coming til Tuesday, oops. She came on Tuesday, then my pain was REALLY bad, so she called my neuro, but I still don't have pain meds so I don't know what's going on with that, not overly concerned though. Wednesday insomnia took over, I felt like crap and haven't improved. Friday I saw the dermatologist I was Really nervous going in, I had No clue what to expect. I have to admit I was scared out of my wits because I didn't want them looking for anything I didn't show willingly, I have a history of blistering sunburn, but I was more concerned about this scab that wont heal and this mole that kept bleeding (since I was there I figured I would take advantage of the appointment) I wasn't thrilled to be sent anyhow, he looked at the legs, figures since they are old, they will heal eventually, but because they keep getting irritated its taking forever. The ones on my breast though, he felt that's taking so long because they are getting rubbed so he prescribed a special antibiotic ointment called Bactroban and put some on it in the office, I checked it a few hours ago and they are already clearing up, that must be some pretty powerful stuff, lol. The mole, it was at my hairline and kept getting caught in the hairbrush, comb, and when I washed my hair, he took it cause it was JUST shy of where they would normally take a mole off anyhow and it kept bleeding. I was kind of nervous about that part, but to be quite honest, I think it hurts worst to take my sugar, I didn't feel the novacaine shot and I certainly didn't feel him sterilize it or remove it, but it was done too quickly to question it, probably 2 minutes tops.

If the skin isn't clear in 3 weeks I have to schedule a follow up, if the biopsy on the mole shows anything they will call, if not, I am all clear.

Then, I am good til the 22^nd when I see the Podiatrist again, 25^th when I see the New Pulmonologist, and 28^th when I see the Primary care, although somewhere in there I need to squeeze in lab work for the Endocrinologist that I see the first week in November.

My head is not playing nice many days, I am stressed out about the bariatric surgery, I have to schedule the Psych eval, I think I have to call Medicare and see what they suggest, because I really REALLY need to talk to someone about how I feel, I don't need to go into this without SERIOSLY talking to someone for a while about this.

Follow Ups are getting Hard When you get Referrals at almost every appointment

2010-09-29T02:05:00.001-04:00

Today I will admit I went to my doctors' appointments a bit apprehensive…after my ultrasound at the beginning of September, I was already very nervous about what to expect when I saw Dr. Masters today, and I guess I had good reason to be. She is repeating the ultrasounds in two months, but my uterus was enlarged, we don't know why…she did a biopsy…or rather attempted to, we will know more at the next appointment if it will need to be repeated, if it does, it will be done in the hospital, under anesthesia, since this one was so hard to get. I pray she got enough to get answers…

If the uterus is still enlarged during the next ultrasound or the bleeding is still acting up, well…we will make a next step at the end of November, I see her again November 30^th, I have to schedule the ultrasound yet.

My blood Pressure was good at BOTH appointments for going through all the stress of the day, lol. 128/78 and 118/68 at the second appointment and they were in the same building and a little over an hour apart.

After I scheduled my follow up with Dr. Masters I scheduled my EMG with Dr. Rossi, that is November 5^th, woo hoo, so exciting, can I skip that one? PLEASE? Just had a funny thought that I could have my old neuro do it, lol, NOT gonna Happen though, and I won't stop liking Dr. Rossi cause she does it, so I don't really have to worry about it either.

Then I walked across the building to see Dr. Dobrin, what a hassle…my Medicaid is a pain in the dupa, because I didn't have a card when I came in the FIRST time, they didn't set it up right, well the lady who drew my blood put it in, but apparently my doctors office and the lab don't bill TOGETHER, so she has to resubmit everything from the FIRST appointment, which is a HUGE appointment cause they ran a gazillion and 50 tests, SO…anyhow…they had a cow about resubmitting it… that's why I am so proud of my lower blood pressure, I was getting really stressed out.

I FINALLY got back to see her, and my stress level went through the roof, but my blood pressure behaved and stayed down, She doesn't like my scabs not healing, my liver enzymes are still too high, and about the only thing that IS working is my sugar…I did mention my breathing issue and my CPAP issue, so she is sending me to a Dermatologist about the open scabs that just won't heal, apparently that's not a good thing, she said if my sugars were high, it would probably be because my diabetes is not well controlled, but my sugar averages 115-118 with the Metformin so obviously that's not the case. She asked about my Pulmonologist and said she doesn't like her, since it's been about 2 years since my last sleep study she wants it repeated and wants me to see a different pulmonologist, I think mine had given up on me cause CPAP wasn't working, but she said not to be surprised if the pulmonologist sends me to see someone else too…which I wont because Dr. Shanidze kept saying I should see a cardiologist for my breathing issue (which I thought a funny thing for a doctor who specializes in the lungs, but my lungs aren't the problem…

So anyhow, I have a call in to the Pulmonologist, I have to call the dermatologist in the morning, and I see Dr. Dobrin on October 28^th. So my October is no Oct 22, 28, and Nov is 2, 5, 11, 23, 30 with 3 to be determined

Sporadic posting at best…it has been a Hectic Month and very overwhelming

2010-09-25T00:16:00.001-04:00

September has been almost as hectic as August was. I knew it wasn't going to be an easy month, so I was a bit prepared, but I don't think anything could have prepared me for the whirlwind that has turned my life upside down, I guess I had forgotten what it was like to have thorough doctors who actually cared about their patients.

I had moved my medical care from one hospital to another in our local area, we do not have a CLOSE hospital no matter what, the closest hospital that is a REAL hospital capable of handling my care is a good 45 minutes away in ANY direction, we have two that are not able to handle it that are closer, but as I said, they are not capable of handling it and I have to head either to Detroit, Southfield (NOT HAPPENING, they tried killing me, see posts from Early to middle 2008) or Troy…

I have been to Detroit, they keep having me see the same doctors who do the same nothingness and send me back to the same docs who do the same nothing…anyhow, it was an easy decision from there. What I wasn't prepared for is follow up care. I had seen a PCP, Neuro, and Gynecologist, who all sent me for tests, those tests some had to be repeated…the ophthalmologist sent me for tests (I was NOT happy about having that redone again, it was early but I did need another tap because my body responded very well)

I also saw a Podiatrist for the Diabetes…a routine exam, or so I thought…man was I wrong…to some degree anyhow. I had said all along I was PRETTY sure that my sugar was NOT causing my nerve pain, at least I now know I was right, in a way I am almost upset I was.

The new doc…I saw this morning, was once again a Beaumont doc, VERY thorough, and decided that the nerve pain was kind of important… ok I want to be out of pain all the time so I happen to agree there…the rest of the appointment kinda threw me though, he decided we would X-Ray to see that it wasn't anything Bony causing issues…HA, Leave it to me to have developed Bone Spurs, now, these had to have formed sometime in the last 9 years cause they were NOT there when I had my fractured foot and was there in 2001 before I got pregnant with Lauren (ya I went to the same foot place)

I also have High arches, OK, so why wasn't THIS a problem 9 years ago? During my pregnancy? Even up til oh…the last 2 ½ years? Ya he didn't have THOSE answers J

What did he do…well, this routine exam turned into almost an hour long ordeal, actually a little longer, He checked my circulation, he tested my nerves, the tuning fork thing, I so hate that cause it hurts on my left foot and ankle, he thinks I may have tarsal tunnel syndrome, the foots answer to carpal tunnel…then he did x-rays, explained THOSE findings, then did Ultrasound massage, NOT comfortable for painful feet and ankles, but didn't complain, just wanted to go home…was frustrated for being honest…Then he gave me inserts for my shoes which now my back and feet hurt more since my shoes now feel too small on top of everything…OH and I have a script to have an EMG and NCV of my foot and ankle to rule out Tarsal Tunnel, that my lovely neurologist gets to do…

I saw my Pulmonologist and I have lots of questions for my PCP since I feel my shortness of breath is something we need to worry about since my pulmonologist seems to care, but only when she isn't rushed…my left chest hurts all the time now…so we need to figure out what's next there too…my mask keeps starting and stopping…too much crap

With IH, Chiari, Sleep Apnea, and Nerve Damage, I really Need just one thing to NOT be complicated, praying that one thing comes with the results from my Gyn appointment on Tuesday, we are discussing permanent Birth control since I am still cramping and spotting but my period stopped a week ago, I also didn't have one last month at all, and they are super heavy when I do…Ugg…I had to have the ultrasounds for that repeated too, scared me to death…but everything happens for a reason…I just don't know WHAT that reason is.

Coming to terms—living with disabilities

2010-09-02T20:15:00.001-04:00

This has been a hard year. I have known for a LONG time that I have had limitations, they didn't really get to me until they started getting to my family.

September is Awareness month for two of the most disabling conditions I suffer from, both Intracranial Hypertension (IH) and Chiari Malformation (ACM) have awareness month in September. Why they put themselves together many of us are wondering, possibly cause Many of the symptoms are very similar, we don't know. For whatever reason, they are both in September.

I know many people over the years have criticized me for not going up and praying for healing week after week, year after year, after all, I am a Christian who believes God can heal ANYONE of ANYTHING, IF
it's God's will. Needless to say, while I pray and hope one day they will find a workable cure or treatment for both of these debilitating diseases so we do not have to suffer, and others after me will not have to suffer. God has been using this disease in my life for over 21 years. I have seen his work, He has brought people IN my life, he has worked through my life, and he has definitely used EVERY surgery, hospitalization and doctors visit for his Glory. I do not feel as if it's a punishment, like I did at 12, 13, and 14 years old when it started. I remember feeling like Job. I remember grumbling and asking God "HOW MUCH MORE?"

A wonderful Mentor by way of my pastor's wife back then, gave me some wonderful words of wisdom, I held them through every trial from then on. Tena said to me, in a counseling session when I cried I wanted to know what I was doing wrong that God was punishing me, she said that it wasn't what I was doing wrong, but what I was doing right, in tears, and pain, I then stopped and asked what I was doing right because I still wanted to be out of pain and I would stop that then. She then explained that these tests were going to be part of my testimony for the rest of my life…I did not realize then, that they would last so long, or have such a profound impact on so many lives.

God has had a very detailed plan for EVERY life I have encountered, I do not know where or how they have all turned out, what I do know, is that I have never put an opportunity to share him through this to waste. Each new diagnosis I have had added, I have cried over. It was VERY hard to be put on a walker at 32, it was great to go to the cane, and devastating to go back to the walker.

I cried when my rehab doc said paralysis instead of radiculopathy, I freaked out a bit, It was hard to take. When they diagnosed me as borderline diabetic, I was almost ok with it, til this week when I learned there is no such thing as Borderline and its actually diabetes, pretty well controlled, but diabetes nonetheless. When I saw my new gynecologist for irregular bleeding, and an annual exam, pretty routine or so I thought, and she is sending me for ultrasounds and a mammogram and breast ultrasound cause she found a mass, I know God will use that too. Needless to say, I am a bit overwhelmed.

I have so many appointments my calendar looks like it has the chicken pox.

If you know someone with a rare disease or disability, take the time to let them know you care about them, and that you are concerned, don't act like they have the plague or treat them like they are a burden cause they are sick, they feel it enough from their own minds. We have enough on our plates emotionally, please remember to think about how you would feel if it was YOU who had that rare disease that only affected a few people.

Often when I go to the doctors office or hospital the nurses and sometimes even the doctors unless they are "my" doctors do not even know what the diseases I am talking about are. I was blessed the day I was diagnosed, a Physician Assistant had seen it in a text book in medical school and I fit the profile, I had already been symptomatic 9 years. The Chiari they found by a neurosurgeon who was a 2^nd opinion. He saw it after my shunt had come OUT, but he saw it in the CT scan before. Basically who knows how long it had been there.

Both diseases are extremely rare, and most people do not know what they are. A support group led me to facebook and a Multitude of friends who know my daily struggles. But those who really know me, I know very few who really know who I am and what I go through. There are three people at church who ask me how I REALLY feel when I say I am fine. One knows why because she has been there with the rare diseases… The other, she just Understands, God has blessed me with a few people to confide in when I need to talk.

For more information on my illnesses feel free to ask, or peruse these links,

www.ihrfoundation.org

http://www.conquerchiari.org/

It Pays to be Honest

2010-08-28T21:24:00.001-04:00

After a rough day of shopping and not being able to complete my list, I got home to discover that the cashier had not rung up my New necessity, Lovely, I had two choices.

We do almost all of our shopping at the local Meijer store, I love their prices and get fantastic deals every time I go in, I used to work for Meijer before Lauren was born (and until she was a year old), so it seems appropriate that I continue to give them a lot of business, I know how the stores work and know what to expect when I shop…

The difference is I get my scripts at Kroger because before I had insurance, they had the $4 plan and I got used to taking care of that there.

My Endocrinology appointment this past Tuesday gifted me with a wonderful chore I am not sure if that is sarcastic or not, it is definitely something that should have been done all along, and I am truly blessed by these new docs.

He gave me a FreeStyle Freedom Lite, blood glucose monitor and officially changed my diagnosis from "pre-diabetes" to type 2 diabetes because my numbers were actually too high and my neuropathy and vision issues qualify me for the diagnosis L Anyhow, my WHOLE sugars are staying in check, but he is guessing its cause I have been on meds for 7 months already, which is PERFECTLY fine by me, they are NOT where he has already made it CLEAR he wants them all the time.

Anyhow how the point of my post, hehe, I had to FINISH my list at Meijer today, I was too tired and worn out yesterday, and when I got home I realized that they did not ring my test strips and lancets (which Medicare only pays for there and Rite Aid (which we will NOT give business to) but in my trying to figure them out, I did not realize they were also Expired, and for the WRONG machine, so I called the manufacturer to ask about it, I was looking all over for an expiration date (turns out the LOT Number IS the expiration date, so I will know for next time…and Abbott is sending me a New box, but, for being honest and PAYING for them at Meijer today anyhow, I got a $5 discount on the rest of my groceries, see it pays to be honest. I could have very easily decided that I didn't want to pay that $17 something or not looked over my receipt, it wouldn't have been hard to miss, I had almost two carts of groceries and other merchandise stocking up for the month. But I did, and I did notice, and we made it right, and you know what, it felt good.

We have a $100 purchase to be made elsewhere plus a new shower head to handicap my bathroom, and its emotional, but I feel knowing that I set a good example for my Lauren to see honesty in action will make an impact when she sees us struggle with this disability on a routine basis. God has been amazing, Right now we have Jobs to look at that for the first time in MONTHS we are finally seeing field jobs that are local, God has provided doctors that are willing to help me instead of being scared of me, and while, it's a work in progress, I am HAPPY with how its moving, my pain levels are all over the place, but I am HAPPY, God is SO good….

Romans 8:28 Literally

2010-08-27T02:52:00.001-04:00

And we know that ALL things work together for good to them that Love God, to them who are the called according to his purpose.

This was the very first verse of scripture I memorized as a child, I was no more than 7 years old and probably closer to 6, little did I know the impact it was going to have on my life, some 28 year later.

This month is nearly over, just a few more days, and the whirlwind that was August will have passed. August has been kind of a blur to me. This year has been VERY rough, but August has been very special, I have always had a bit of fear about facing my health issues, ok, I know I have two rare diseases, I have one NOT so rare complication of the two and I have one NORMAL disease…my overall health up til 2008 was relatively stable, Ok, 2003 but I lived in denial for a LONG time, and I admitted it in 2007/2008, ANYHOW.

Last year, my spinal taps did not give me ANY relief, but I was not drained down lower than 16-18cm of pressure (for non IHers, think in terms of Blood Pressure except its spinal pressure, Normal ranges from 10-20, but my body out produces and the lower they drain the longer I have before I need another, not only that, but the longer my head gets good relief, but some get low pressure headaches, I have NEVER experienced Low pressure.)

On to this August, On the 10^th, I had to be taken to the ER due to not being able to handle the pan, Chris called his mom, she did not return the o=fall for two days. So, he called hi dad, and they took Lauren, but that changed hospitals.

By Chanaging Hospitals, I got many new docs, Dr. Rossi, (neuro) Dr. Dobrin (pcp) Dr. Masters (gyn) Dr. Simone (optho) and Dr. Al-Kassab, endocrinology. SO far out of the docs I have met, I am VERY impressed with ALL of them. I have 2 to go.

I had my stress test Tuesday, endo, Wed, Dr Rossi, Thurs,

Changes on the Horizon

2010-08-20T02:49:00.001-04:00

After many months of pain, suffering, and med changes with little or no success, and often negative results the neurologist I was so thrilled to find almost 2 years ago gave up on me and referred me to Michigan Head and Neck Institute, I looked at this as a mixed blessing til Tuesday and Wednesday of this week, you see, MHNI is supposedly one of the top headache places in the Nation, however they use a lot of coping techniques, and protocol meds that I am already on, so we were not 100% confident in their ability to help when we were being sent (after all 21 years of a headache, I think I do a pretty good job of coping MOST of the time, until lately I did normal tasks, since February it's just been kicking my butt way more than I like, hopefully the new meds the new docs are trying will help (I am getting there)

Last Tuesday (August 10, 2010) I finally had enough, I had emailed my neuro and left messages because MHNI was not going to be getting me in til November 8,2010 and I was going to run out of meds if he didn't refill or see me again (he had been seeing every 2 months) and he stopped returning calls, but the last straw was when I got stuck in the bathtub, neither leg would lift me out and Chris had to help me out, walk me with my cane out to the living room and help me cool down. The shower didn't help the pain and I was feeling worse than before. We called family to watch Lauren, and decided to head to the ER. Once there (we decided on a different hospital than usual because after praying we decided we didn't want to be sent back to the same docs who were doing NOTHING for me) God REALLY used this decision in an AMAZING way.

Within less than 30 minutes of arriving in the ER I had an IV in and pain meds going, even after the two tries to get the line started. The ER doc had decided before giving me pain meds she was admitting for a minimum of Observation overnight, to be seen by THEIR neurologists, What a blessing that turned out to be…

In the hospital I got pain meds around the clock that did almost nothing for the first 24 hours, then I got a WONDERFUL spinal tap, We don't know how high my pressure was, but the radiologist said I would have broken the manometer so I trust it was WAY too high, a dear dear friend had been scolding me for putting it off for MONTHS, she was so right…sorry Brooke.

Anyhow, after my tap, I did not get immediate relief (and after my last tap they didn't drain me far enough so I got NO relief, this time he drained A LOT of fluid) so while it took about an hour to kick in, I got my pain down to a 6 (it had been literally about a 30+ so a 6 felt like heaven, I had not felt a 6 in years, probably before Lauren was born.

At my last appointment with Dr. Turner he had asked if I thought I could have Fibromyalgia (he had a medical student or resident who did a FULL neuro exam) and I didn't know (not my job to research, even though I know the symptoms coincide with Chiari A LOT), when I was in the hospital the hospitalist and ER doc asked the same question, I actually told the Hospitalist that I didn't go to medical school to self diagnose myself, I was in a crabby mood when she asked, Pain meds weren't cutting it and she had just poked me all over…I don't like docs poking me especially when it HURTS. But hey she was doing her job and that's where the changes come in.

Dr. Rossi, the new neuro met with me, she thinks there may be something with my neck, if it's my Chiari, she will know, we have decided to manage it medically for now and possibly see if physical therapy will help as well. I saw her in the hospital, they wanted me to follow up with my primary doc, but he always said "its not my job" and reminded me of the story "Everybody said that Anybody could do all the good things that NOBODY did" because My 3 main docs were named EVERYBODY, ANYBODY, and NOBODY. I switched PCPs, Dr. Dobrin I met today, and is the Furthest from Dr. Butlers it's not my job. We went over my history, and what I considered Heartburn she considered chest pain and ordered an EKG and Chest X-ray, she ordered a ton of Blood Work and a Urinalysis. Uhm, overall I was there 3 hours…she checked me HEAD to toe, Literally, and because of my pain at ALL trigger points, said fibro isn't a question, it is definite. Then she went on to CHEW ME OUT, lol for not seeing an Eye doctor (which was well deserved with IH I am supposed to see them annually or more often, and I am OH 10 months overdue) she gave me a referral, and it was so funny, I was checking is ratings on Vitals.com and a friend rated him. Then she gave me a referral to the Ob/Gyn in her office L because she is concerned my VERY Heavy Periods could be caused from fibroids or something else. Either way, she doesn't want me risking getting pregnant, so that's another doc to see. So while I got a New Endo because of my blood sugars not being controlled while in the hospital, a New Neuro because mine basically quit on me (and MHNI quit before they started, they called and told me I was too complicated for them) a new PCP, a New Ob/Gyn, a new Ophthalmologist…ahh sigh, I have lots going on, and she didn't look defeated or even scared off, just prepared for a challenge and glad that Dr. Rossi would be handing MOST of my medical care, lol, after all 90% of my medical is Neuro anyhow, but they are all in the same office with the same chart, so if I get NORMAL sick, I don't need to let someone else know about it.

From my Hospital Bed

2010-08-12T09:56:00.001-04:00

On Tuesday I gave up. I had every intention of going to the DMC but God had other plans… and now I know why.

We called Chris's parents to watch Lauren, first his mom since she is closer to Detroit, but no answer, and no return call, since she NEVER gets to see Lauren we figured this would be the perfect time, but alas, she didn't want to see her this time either, so…where is Lauren? with Chris's Dad most of the days when Chris comes to see me and the first night.

There was No Wait to get a room in the ER, I was very weak and tired, and rated a 3 out of 5 for priority, so right in the middle, The doc that examined me immediately asked permission to admit overnight for observation due to the slew of strange symptoms.

So, I thought that was that, I would meet her Idea of a Neurologist and be sent home on Wednesday, HA HA.

I had my CT in the ER, but that was about all they did. I had to wait til Wednesday fir my spinal tap, to meet the neuro just about everything.

So they take me up to a room on the 5^th floor, Medical/Surgical. And here I sit, getting morphine every 2 hours 4ml at a time, and 8ml of Zofran every 8 hours.

The Vampires are here…be back in a few to finish the post.they had to finger draw my blood, but I spilled my meds everywhere. Ahh, meds replaced, breakfast in, praying it stays that way.

Anyhow…

Wednesday morning I get this horrible nurse who is trying to withhold pain and nausea meds, it was so bad I did not ask for my meds from 4:30-she went home. I had an LP done first thing Wednesday in interventional radiology he did awesome although ], we have no clue what my pressure was the fluid flowed like a faucet. He went above all of my scar tissue and poked twice, I felt nothing except the fluid draining.

Today they are ready discharge me, but and that's a big but, my pain, must be managed first, the hospitalist wants to stop my Morphine and not replace my iv if it does decide to kick the bucket.

Physical Therapy Evaluation today I better catch a nap

It’s been FOREVER

2010-08-01T19:42:00.001-04:00

Okay, I know it has been forever since I last blogged, I don't even remember my last post and my brain isn't working well enough to go look, so this may seem a little redundant, especially to my facebook readers.

Things have been really hard this summer. In late May my neurologist put me on 100mg of Verapamil a Blood Pressure medicine commonly used for headaches, we figured since my blood pressure runs high normal but normal nonetheless it wouldn't hurt, HA!!! Well, it didn't react discovered my arms and legs tingle and hurt ALL the time, and when I say ALL I mean ALL the time. I used to just have bad pain on my left side but now my right side hurts like crazy too, so my whole body hurts all over all the time.

I saw my pulmonologist in June, my Primary care in June, and I was pretty close to fine for both of those appointments. In July however, I started having this weird issue, when my Pain levels went up my lips and mouth turn purplish blue, both when I am awake and asleep. Well, I had JUST seen my docs and had an appointment scheduled to have a stress test done, so I figured I would discuss it with the cardiologist, on July 16^th, low and behold I just saw the nurses, and man was that fun, they made me to the treadmill test even though it was pain that got my heart rate up, I have to call Sara on Monday to see if she has gotten the results from that faxed in yet. She is at the bariatric surgeons office.

On July 22^nd I saw my neurologist, I figured he was going to schedule a spinal tap because of the immense pain I had been in but nope, he is sending me to Michigan Head and neurological Institute in Ann Arbor, I can't get in there til November, but by golly I will likely end up hospitalized for 2 weeks to see if they can get my pain under control, it almost sounds laughable at this point.

Chris is still unemployed, looking locally and out of state. He will likely be going to finish his degree at a state school somewhere outside of Michigan in Accounting, I am excited, he will finish his associate degree in December unless he gets a job in which case he will finish in May, 4 classes is too much for a working man to take all at once if he gets a full time job, especially here, these teachers forget they are not teaching at a university and expect you to put in close to 40 hours a week on assignments, so he needs to do well so he will be only taking two if he gets a job.

I see my respiratory therapist and endocrinologist on Wednesday and will ask them about the blue lips then. Until then tomorrow we start our new school year and I am already worn out, We are studying State History all 50 states, for History and Geography and some Science, Science is Nature studies based on the location we are studying. Math we are doing Multiplication facts, 4 digit addition and subtraction, as well as fractions and some other concepts we will be expanding Math quite a bit. Handwriting, we are doing Pen Pals with a friend of mine with IH's daughter as well as copy work. Grammar we are going to be learning about Nouns, verbs, pronouns and sentence structure. We will also focus on how to write punctuate.

How much More??

2010-06-25T19:06:00.001-04:00

For my facebook friends, they know how hard it's been. for the rest of the world, the only ones who know how hard it really is are those in my immediate household.

I am very private except on here because not many people know this exists. I truly do not know how much more I can handle. I do not want to hear one more person say "give it to GOD, or it's all in his hands, or God does not put on more than you can bare, or any other "quotable" bible verses Right now, they are not what I need, I need a HUG, a we're praying for you, or simply a simply when Truly led, a gentle hug.

Please don't ask how I feel, I am going to say fine, because you can't handle the truth, There are very few people who know the truth, and ONE special lady who knows it VERY well, she has been my Biggest Inspiration, since she has been through such battles as well. I recall a chat with her, she made me smile, we looked at each other and asked NOW, How do you REALLY feel J I love that woman so much.

My pain tolerance is very High, but I have seriously been contemplating a trip to the ER a lot lately, I have been so sick and I am scared that it is not getting any better. Will it ever improve? If not, is God really using it or is it just taking a toll for nothing?

Only time will tell.

I HATE SEE SAWS

2010-06-15T02:02:00.001-04:00

This month has been a physical and emotional see saw and its only half over.

We did our financial paperwork for the sliding scale at my primary care doctors office and because Chris's unemployment is officially up this week, I had to turn in some extra papers while we WAIT on the government to decide what they are going to do about the last extension (somehow we were blessed and he actually had one more week, not sure if I miscalculated or what, but what a HUGE blessing it is) Anyhow… I had to turn in those extra papers on Friday, we still have not heard if he will even be approved for the 20 week extension probably because the government hasn't decided if they are going to keep doing it or not (I so am not happy how they are playing with this, if they discontinue it so many bad things WILL happen, there are about 5 people out of work for every 1 job that is available, Chris has gotten 3 interviews for I don't know how many hundreds of applications he has turned in, but 3 interviews in 18 months, but he put that time to good use and is almost done with a degree in Accounting)

My body though is also playing on a See Saw, Last week, Monday I was weak and felt sick all day, Tuesday I felt normal (my normal, not normal people normal) Wednesday I was fine, weak but fine, Thursday I puked all morning and was sicker than I don't know what, Friday, you would have No clue that I had been sick, back to being my normal sick, Saturday we had humidity that nearly killed me, I passed out in the living room and I literally prayed for God to take me home the pain was so unrealistically unbearable. Sunday started off HORRIBLE, I took my shower went to church and the humidity broke with the weather and I felt GREAT, my usual pain is up around a 12 most days on average, no 10s here, my doc doesn't even ask anymore, he knows that my good days are what would have his typical patients begging for narcotics, yet I am on NONE…but Sunday was about a 4 day until probably 3pm, yes, I made it through about half of the graduation party before I started climbing the scale, and I was there til 5:30pm and then went to Kroger after, I got home a little after 6:15pm by 7:30 I still I had not hit an 8, a very unusual rare happening, we are talking Miracle of all miracles day here. I was so elated. I came home, put groceries away, let Lauren play for a bit, and relaxed…then is started to hit…Uhm Uh OH… I Over DID it…

HA… 9pm…yikes, I feel really sick, take meds, drink, lay down Lauren cuddles than goes to bed Chris gets home, THANK GOD he is home safe, Uh OH!! I can't sleep, like tonight its almost 2am and I am still awake, but I am oh so exhausted, my body aches my head feels like those commercials for sinus meds, but OH how I wish this was sinuses, or even a simple migraine, I can't hold my head up, I lie down using support on my neck, I cry quietly in pain, that hurts too, my CPAP mask HURTS today, It's too much pressure on my head, but without it I can't breathe right, my neck is screaming, my head weighs too much, I turn it to crack it, it pops about half a dozen times, turn the other way, same thing, but no relief. I get to sleep…but its fitful cause of the pain, I wake up, everyone is crabby, I feel like I haven't slept at all, Chris enlightens me, its 12:45pm I TRY to sit up, I fall back down, try again, same thing, I ask what the humidity and weather is outside…Not really needing to know, my body is clearly telling me its VERY humid today and its going to be a bad head day. I manage on the 4^th try to get up and get to the bathroom, Tears run down my face, I just slept half the day and I still feel horrible, my family needs me awake and I am barely able to move.

It scares them to see me so weak yet so many days are like this anymore. If I do not have an appointment, I do not wake up, I have to have an alarm set or I sleep, it is rare for me to wake up, either that or I have such insomnia I am awake til 5-6am, then I get no sleep and its even worse. Neither works….if my see saw ride continues, tomorrow should be a good day, here's hoping, but I need a few more good days

Another Busy Day Gone By

2010-06-08T00:16:00.001-04:00

Technically there are NOT two posts today, if this gets up before midnight it's a fluke, if not, "Choices" was still written yesterday, lol Blogger decided it wanted to be down when I was trying to post, since I use Word to do my posts and publish from here it didn't get posted til today. Oh well.

Today was interesting… This morning I had our finance appointment with my doctor's office (we are on a sliding fee scale, income based, but I LOVE going there anyhow) when I got home, I went into the master bedroom to rest, I felt worn out from a single activity and so I wanted to spend a few minutes refocusing because I knew Chris wanted to spend some time as a family, we don't get a lot of that, even with him home…he is busy looking for work and trying to stay occupied, and I am busy dealing with Lauren (and napping because my body gets worn out too easily)

So we went out and did some stuff together and then came home and rested again, Lauren decided it was the perfect time to practice her defiance act…I admit we are dealing with a lot of this as a control issue rather than anything else, likely due to a few issues, but today it made me more upset than normal, so we put her to work and then sent her to her room while I napped. We went to Kroger together just her and I earlier and she enjoyed that time so I had hoped that she would see that she can be good and get attention without it always being negative…

She takes so much out of me when she does not listen and has her attitude issues. Tonight her fit was very different, I felt different and Chris felt it too. We weren't sure why, but this time when she was sent to bed early she was given NO opportunity to disobey, every process she had to do she was followed including being sat with and read to in her room for an hour…usually we allow her quiet reading time before sleep, but we find she moves around on the bed, flops and gets out of it, not tonight, she had a LITTLE choice in reading material, but not much, and a lot of discussion. She is growing up and I think it's finally time… We read a few short stories from a regular book…but then we discussed why obedience is SO important.

Then we talked about attitudes, and pulled out a book that last time we tried reading she was Too young to grasp, Elsie Dinsmore, Yep, good ole Elsie crept back on our shelves, and this time we had a long talk about why Elsie is the way she is. It was really good, I want to see Lauren blossom I want her to learn to have the Character of Elsie Disnmore, that 9 year old who honored God above all and took the bible at its word. Now yes, we understand some things differently, but those, we can explain and work with, however, she also grasps that the books are OLD FASHIONED and kinda freaked out thinking I wanted her to be old fashioned, lol, and breathed a huge sigh of relief when I explained what I meant when I wanted her to be more like Elsie and how she honored Jesus in her life, kind of like a heroine. She felt better when I explained that the original books were written 142 years ago so the times have definitely changed a LOT since then.

Choices, which will you make??

2010-06-07T23:13:00.001-04:00

My life has been a rollercoaster ride lately, and there are many days I whine and complain, my family gets the brunt of it, my blog gets most of the rest and a few REALLY trusted friends who have IH and understand what I go through seem to help with the rest.

Today though when I was checking up on my IH blogs, God really tugged at my heart, there are several "Christians" with this disease who really seem to be having a tough time yet they are definitely getting more care than I have gotten but that is neither here nor there, this is not about me, this is about the choice we make. I CHOOSE to function with or without daily pain. Some days, I Can not fully function, yes, I am down to about 4 good hours per day, but you know what, I take full advantage of those four hours.

Today, I went to church, then my 4 hours were up, I should have come home, taken a nap and my day would have been over, but no, I chose to push a little, because my family needs me, If I suffer a little, yes, I pay for it later, but someone shared a story called "The Spoon Theory" a few weeks ago, and it so applies to our daily lives, yes, it was written for Lupus, but I see it so profoundly in IH my, daily life is about how "the spoon theory works" today I borrowed spoons to make Hubby happy.

You see, He and I are both Amateur Radio Operators, Hams, I got my tech license the same day he got his Extra, it was a challenge I set to him, and he definitely held his end, now I don't use the radio, I help with set ups, and I liked going to the events before IH started getting really bad, but I still was always struggling in the heat and miserable, but it was family time and something we did.

Today was Pre-Field day at Metro-Beach, our local state park, we went out after church spent roughly an hour before the storms hit, and boy did they hit hard, now those with IH know that storms DO not agree with our heads, but as a wife, it is a servants heart I CHOSE to spend this time with him. We then stopped for ice cream on the way home as a treat for going out, it was a nice sweet treat for my sweetheart. We got home about 6pm, overall, I was up for about 5 extra hours that my body really struggled to deal with. My point, I chose to do things with my family, yes it rained, YES, My head still went through the roof, NO, I do not have pain meds, but what I do have, is a family who loves me and I have the joy of the time I spent with them. I chose not to complain, Chris could see how much pain I was in, but he knows that these activities are TRUE labors of love. We do things for each other because We can.

SO quit complaining about what you CAN'T do, and start DOING what you can. Realize that you have to do things when you are in pain, this is your life now, its not going to change, Yes, God MAY choose to heal you, but then again, this may be like Paul's THORN in the Flesh, and something you have to deal with, so learn to accept it, you are allowed to have days where that is a struggle, but start counting those blessings, and I promise this ride will, yes it REALLY will get easier.

Down but not out, Overwhelmed but not Hopeless

2010-06-04T21:47:00.001-04:00

This has been a HARD two weeks. Back up…I do not even remember when I posted last, and my head hurts too much to go look.

My eyes hurt, I was SUPPOSED to schedule an eye appointment, and if certain people read this I will get scolded big time, I guess it is a mixed blessing that I have been praying for them because they have been so sick lately too? Hmm, not quite sure how that works…anyhow, Both of my eyes are causing me Major pain, I would love to say its cause I ran out of meds, but, that would not take effect today since, oh, I won't technically be out til tomorrow, lol, I took the last one this morning, and I am going to Kroger in the morning to fill the script.

May 25^th, Chris and I celebrated 9 years of Marriage, it was a rough day, we realized out of 9 years I have been healthy less than 2, that was a very tough pill to swallow, I came out of remission almost as soon as we got married and have been in various levels of pain ever since, the last 4 years now have been the hardest though…its hard to believe it's been 4 years that it's been so bad nonstop though, even harder to believe I waited a full year before I called the doc thinking it was just a phase and would pass, lol. Man was that a dumb decision…especially since it had been a growing problem for the previous several years.

Anyhow… May 27^th I saw Dr. Turner, I have to admit I left a little more than frustrated, I was overwhelmed I needed to ask questions and I didn't get to because he had medical students and was overbooked and very overwhelmed himself…I left angry and frustrated with nothing more than a new script. It got filled and I see him in July…Let me tell you, next appointment BETTER not be rushed or HE will not hear the end of it…I was NOT happy, and now I feel worse than ever. My body is having major tinglies in both arms and legs, I am getting roughly 4 good hours a day, and that is just plain not enough (oh and my next appt with him is at 8am, so if I don't get time, being the first appt of the day, I will have a FIT) I have CONSTANT nausea, and am just fed up with everything. My temper is flaring, which I have read is a side effect of MANY of the meds he has me on and the new one causes swelling and heart racing and all sorts of weird things, Nope don't like it especially since my head is not improving ANY. 2 days of somewhat half improvement is not sufficient for this crap.

Today I saw my Pulmonologist. She decided to run LATE, 50 minutes late to be precise (oh and my Verapamil did not lower my blood pressure it was 159/89, one pt lower than usual after driving through massive construction zones) she wants a pulmonary function test and chest x-ray done before my gastric bypass is scheduled, I am to schedule those for the same day as my appointment with Dr. Zambare in August since I will already be in Southfield (make only one trip, that I can deal with, and I like her techs I have been dealing with them for two years) Then I see her again in September. The only change she wants me to make with my CPAP is to wear it when I nap too, a pain in the butt for sure since I nap 1-3 times a day but my sleepiness scale increased 4pts this time so she thinks I may be having apneas during the frequent naps too and that may be why I am needing more and always tired regardless of how much sleep I get…So CPAP All The time, Chris teased me I might as well just keep it on 24/7 since I fall asleep when we talk sometimes, I don't think I am that bad, but I do zone out a lot.

Ugh Headache getting much Much worse, didn't think it could get worse than it was, I may need to use an Ice pack tonight, I posed a question for nausea relief and every suggestion was full of sugar that I can't have I almost cried, I think I will be asking for an appointment with my PCP when I see his finance lady Monday…I am so tired of the constant nausea.

This and That

2010-05-22T23:45:00.001-04:00

Well it's been a while since my last post and lots has happened, not much exciting nothing further as far as the RNY, basically I have been too sick to really get any further on the process, IH has overtaken a period of my life and I have been busy trying to make sure it is not winning the war.

I have not made it to church nearly as much as I would have liked to over the last two months. I barely passed my last class, and with that, I got through Business Law with just a C+, my brain never picked up pace during this quarter at all. In the last 10 weeks I have not had more than a few good hours put together in a row, so not what I am used to.

In just a few more days I get to celebrate my anniversary On May 25, 2010, I have been married to the most wonderful Man on earth for 9 years, that's longer than most marriages last anymore, especially for people my age.

On May 27, 2010, I see my Neurologist, he and I are going to have a LONG talk, My body and I are not getting along again, I have been having lots of falling episodes again, so not cool, usually right back on the couch or chair, but still not cool, I went to walk to the shed and Chris had to walk with me holding me steady the whole way back.

Headaches, we won't put a number on them, it's too high to identify way past ten most days, and those are my better days.

So, my and that has been a rough road. There has been a lot going on and I am tired of it. I am ready for a break and I am ready to see my friends have one too.

I walked out of my Doctors appointment without feeling defeated

2010-05-06T01:37:00.001-04:00

I saw Dr. Z this morning, she is my wonderful endocrinologist. She has been helping me stay away from becoming a diabetic as well as working towards correcting some vitamin deficiencies and PCOS as well as getting me ready for bariatric surgery which we are aiming for in the fall.

I am down 8lbs in 2 months, Not a lot but it means we are finally FINALLY making progress. We are not sure if it's the meds, the dietary changes from the constant nausea, or what, but I have not lost 8lbs EVER.

She would like to see another 30lbs down before I have the surgery, but now I have more incentive than ever to get it gone, that means I would be that much closer to hitting a better goal. She likes the surgeon I picked, and is writing a really GOOD report for the insurance for progress notes, yay.

I see her again in August. Hopefully surgery will be scheduled for September or October.

If you don’t want to listen to your Doctors then STOP complaining about them and find New ones

2010-05-03T04:02:00.000-04:00

Can you tell by the title where this is going? Can you tell by the title what kind of mood I am in? It’s almost 3am, I just checked in on my support boards because my head is not being nice, I figured I could use some encouraging, one of my closest friends is in ICU and I went on to pray for her and felt a little better, then I saw all the whining on the other board…

So, I decided I would let people know that the doctors are not ALWAYS wrong. There is a very VALID reason that they often tell us with IH to get OFF of our Pain Meds, See www.rxlist.com and type in your pain med, look at the Warning label and see what it does to us…then come see me if you think that the doctor was still crazy for telling you to wean OFF of it, yes, most of our lovely pain meds that make us FEEL BETTER increase our CSF (for the normal person who may read my blog, that’s spinal fluid that protects our brain and spinal cord and causes the Intracranial Hypertension that the majority of my friends have but it also affects many of my fellow chiarians as well)

So Those idiot docs we see, they are not being Mean by telling us to wean off the drugs, they really are helping us, yes, sometimes we need something to control the pain, but more often we are making ourselves worse. Yes, we know our bodies, but they know how the meds work, they are trained to handle the interactions. Sometimes our bodies do not work right and their hands are tied. Do not get angry, that raises your pressures and makes you feel worse. Do not make yourself out to be better than they are, you have not studied and gone to school to not be able to figure your issue out. This is rare, while they are finding more people it affects, it’s still rare and that means that they do not have answers or a protocol outside of their normal routine ways of handling things…if you happen to NOT FIT the mold, Please be patient and think that all you are harming is yourself by getting angry and frustrated. By lashing out at others, you are not making them want to help you. By lashing out at the doctors you are not making them want to rush to find answers for you. If you push your family to either lash out or you push them away, you are not helping them in any way.

If you are not spending your good days with your family (and yes, even those who have Extreme cases of IH and I can name a few really bad cases that are very inspirational off the top of my head, but even they have good days sometimes) But until you have walked in THEIR shoes, count yourself blessed, some have had this more than 10 years and endured hundreds of taps and dozens of surgeries and countless other complications. I have been through less than they have and look up to them, yes, I have had the diagnosis a long time, and I have had some complications, but when I see the people I have met, I look up to certain people.

They are Hero’s they have endured so much with very little complaint, they make me very frustrated when I see people who are newly diagnosed acting like they have a death sentence. Kayla, Lynne, Susan, Brooke, a small number of people who quietly fight and share their experiences, but they help others because they are an inspiration to all who watch them. They do not murmur or complain. Sometimes they ask for strength, or courage, but never sympathy. There is strength. Then I see a little tiny boy, only 5 years old. What will he go through? I don’t know? But one thing I do know, Elijah is strong, and his family is too, and he has role models, while we don’t think it’s fair that he has to endure this, I am sure as I can be, that that little boy will come through a fighter because he is growing up with this not a whiney adult like I see elsewhere. Yes, right now he may see fear when he goes and has a spinal tap or test done but as he grows up, maybe he can be one of the first generations to be spinal tap free, maybe they will learn how to reduce the pressure without it, they are testing it now. Better yet, maybe in his lifetime they will find a cure and he will not have to take meds that make him sick his whole life. Whatever God’s plan, I can bet, we won’t hear Elijah complaining about it, or any of the others, because We are strong, We Will Beat this together.

We may have IH, but as Kayla says, IH will NEVER have Us.

Such an Inspiration for someone who has had this since she was so young I believe if my semi non functioning memory serves me right, Kayla got sick around the same time I did, but that young woman has been put through the wringer more than I have times ten. I admire her courage and strength so much. She is just 16.

My Brain and I are NOT getting along

2010-04-28T19:29:00.001-04:00

I know my posts seem sporadic; they seem to be running with my sleep patterns. Today I went to pick up my scripts and nearly lost it at the pharmacy. A simple trip through the drive through and I am Changing pharmacies No ifs ands or buts about it. I have had it up to my eyeballs (which are in almost constant pain the last few weeks) but I am tired of crap.

I have not slept a solid 4 hours in more than a week. So I am severely lacking in patience. I have never felt so blessed to NOT hear my phone (the tinnitus is actually outdoing household noises lately) But I went through the drive through to pick up my scripts that have been ready for a week now (I call them in before I run out)

And I am dealing with the lovely pharmacy, my scripts are ready, and the person in front of me is PARKED in the drive through…yes PARKED

They actually Filled a second script and WAITED

I could have screamed. What is the point of drive through convenience, then I get up there and they can't figure out one of my meds. It's been $8.72 for the last year, and all of a sudden they can't figure it out because it's not covered by Medicare. I was ready to scream…My pressure has been up, I know this, I can feel it and I am getting to the point of actually being willing to go in to the ER, however I just want to finish this semester in school first.

Next week I see my endocrinologist, then 3 weeks later I see my neuro, I want to be able to hold out til I can see him and see if he will schedule one and do it himself instead of having to get it done in the ER. Then the following week I see my Pulmonologist. I just am tired of feeling crappy.

The Path Life takes us down

2010-04-21T21:27:00.001-04:00

A little over a month ago I wrote a post about twists and turns, In 10 days it will have been 27 months since my shunt came out and within months I had seen two different docs that when their "weight loss" suggestions netted me a mere pound or two in a month down on the scale (sometimes it didn't move and sometimes it even went up) they started suggesting bariatric surgery. The neurosurgeon at the time good as he was (he found the Chiari) but he could not figure me out, and he suggested gastric banding in other words Lap band, when my pulmonologist could not get my sleep apnea under control with massive pressure increases, she complained that I needed to see about some sort of "surgical weight loss"

Well…when my shunt came out there was a simple catch, our insurance covered NOTHING weight related, and I mean NOTHING. If it was mentioned on the report it was not covered.

Then in December when Chris lost his job that was the end of that, there was NO WAY we could ever pay for it on our own, but I was getting sicker and sicker and I had been seeing an AMAZING rehab doctor who referred me to the neurologist in his office (closer to home and much more competent in taking care of me) He did NOT mention Weight loss Surgery, He said it would benefit me and my Overall Health, but he did not promise an overall cure either.

Dr. Turner after a year asked me a question, I nearly had had a breakdown in his office, it was a bad pain day and nothing was going right, and I simply asked why my body was working against me. So he started asking a series of yes/no questions and suggested that when I get insurance I see an endocrinologist…My pulmonologist agreed and since he had not referred anyone she had Just the someone in mind.

That someone happened to be Dr. Zambare, she also is one of the lead doctors for the Medical weight loss team through the hospital where I had done some research and they have the BEST in the area of what is called Center of Excellence (Medicare requirement) Hospital for bariatric surgery.

My appointment was scheduled for the week following my Medicare effective date.

I had lots of appointments that week, since it was the first time I had had insurance since December 2008 I had everyone stacked into 5 days. I had been having some issues with my balance and mentioned them to dr. Turner (neurologist) and he sent me for some blood work (then Dr. Zambare did not repeat any of the tests) and I was diagnosed as pre-diabetic to add to my Intracranial Hypertension/Pseudotumor Cerebri and Chiari and Sleep Apnea, well, She put me on some initial meds to help with that but suggested I go to the two seminars about their weight loss programs (Medical and Surgical) where they go over the options and cost and basically tell you about what they are.

I had always had it in my mind that a lap band would not work, The reason I felt this way was I had read a lot about people who NEVER succeeded with them and since I already follow a portion control diet that isn't far from their post op diet (except the immediate after surgery of liquids and purees) I really didn't see how that was going to do me much good, well I also couldn't figure out why all the (non bariatric) doctors kept talking like this was easier and it would make me skinny and it would all go away.

Uhm, HELLO, I have A LOT of weight to lose, some 200lbs or more, ideally, but I do not see that happening easily under any circumstance. Very few of my doctors seemed to have the reality that that was not going to be easy, I have family and friends who have had a few different procedures bypass, banding, and stapling, and gained all the weight and then some back, I just could not see the point to putting myself through that and gaining the weight again.

Well I went into the seminar mid March and the first thing the Dr. doing the seminar said was THIS is NOT easy; it's JUST a TOOL, Hello!!! The lights went off and it hit home. I am handicapped, YES, but I can use a tool to Help me, just like I use my cane to get around, this is not going to make my weight come off, but it can help with the excess and it may not make me the Ideal weight, but it may help me get closer to it, and that is more of my goal.

SO, this morning, I had my appointment with the nutritionist, she gives me a goal, I wasn't too happy setting this goal, until I understood what it meant.

Every goal, has a meaning, our last goal was to try to eat more meals, EVEN if they are little, because I had the bad habit of only eating once a day, now even if it's just a yogurt, I have something at least twice, Today, I actually ate 3 meals though.

The reason you need to be in the habit of eating often is your metabolism thinks it's being starved and it HOLDS onto the fat stores. Another thing, she wants me to start drinking a protein shake as one of my meals since I struggle with eating. I got sugar free Carnation Instant Breakfast (I need to find them in the Variety Pack, Meijer only had Chocolate) and I am making them with 1% milk that counts for both a MEAL and my liquids, a 2fer.

My second goal is to start drinking more Low calorie beverages, That means I get to go to GFS and stock up on Fruit20, Now, nobody go suggesting plain water to me, because the one thing I have learned, after surgery I will have a VERY hard time with Plain water, especially the way I like it (ICE COLD)

My THIRD GOAL Ok This is the HUGE HUGE and ASTRONOMICALLY HUGE goal, is to get the rest of the stuff done on my check list, because they should be able to use Dr. Zambare's records as Dietary records which means…..Drum ROLL I need to complete Turn in my paperwork to get my Stress TEST, My Psych Eval, and THEN, we can schedule surgery

YIKES YAY Needless to say I am both excited and nervous, that means we are as little as 2 months away.

The heart of man plans his way,
but the Lord establishes his steps.

—Proverbs 16:9

Mixed Emotions for Mixed Headaches

2010-04-15T19:44:00.001-04:00

Well today has been a VERY challenging roller coaster ride. In fact, this whole week has been that way.

Sunday, I went to Lansing with my family to meet other people with IH, it was very different to meet Face to Face people who have the disease that has literally been taking so much out of me.

Samantha who coordinated the whole event along with Jenn from Grand Rapids area and Monique and I From the Detroit area were there, we were expecting at least 2-4 more people but they cancelled last minute, that I have to say was kind of disappointing, the drive was very hard on two of us and we have been paying for it ever since.

Sunday I had my first low pain day in ages, it hovered around a 4-5 until we got home, that was purely the grace of God because I know I could not have handled a rough pain day and travel.

Monday my pain was back to normal, but nowhere near what it has been growing to over the week, but I had other things stressing me out. Lauren has been having issues dealing with me being sick and My heart was tearing in two, We were blessed with the book Caitlin's Wish, by Victoria Taylor, A Recommended read for ANYONE who has children and has this Pseudotumor Cerebri/Intracranial Hypertension, It truly will help the whole family see what the patient feels, even if in just a small way.

A good friend of mine in Texas with PTC was supposed to have a "simple" procedure done Monday and wound up in ICU for two days, while she is recovering nicely now, it's still traumatic knowing how hard it's been on her, she has been such an inspiration to so many and we miss seeing her online.

Tuesday my pain decided it was going to increase even more but I was still not in the mood to go to the ER. Wednesday night, a Lady from Church who has been waiting for a liver for a transplant got the call and got her liver this morning, yes Tax day April 15, 2010 will be a day Sweet Sue will remember for ever as a day of second Chances, God has truly blessed her today.

My head has decided that it doesn't know if it wants to have Chiari headaches, PTC headaches, Tension headaches, or Migraines, or likely a LOT of all of the above.

I am in more pain than humanly imaginable. What started off as just occipital pain (back of head) has moved behind right eye (bad eye) then left eye (good eye) and now has decided to take over where my sinuses are too, then ears, shoulders, back and neck, then radiating down arms and legs. Even my hair and teeth hurt. I don't know what to do…I see the dietitian on Wednesday next week and I see my neurologist in May. I am seriously thinking of calling him if it doesn't let up, but I have to drop off some stuff at my primary doc and maybe I will ask them, or maybe I will hold off til my stress test and see what happens then. Dunno.

Trusting In God when Things don’t go our way

2010-03-24T00:53:00.001-04:00

I am of No political affiliation, when I vote, I vote for the candidate that best fits my belief patterns, be it democrat, republican, or any other party unless it is a presidential election then I vote for who is the best choice to not get the one I don't want in as well.

That being said I have heard a lot of panic go about from the media especially Christians. I have but one question.

When did we stop trusting that GOD is in control? 2 Chronicles 7:14 is not referring to NON Christian when it calls for MY PEOPLE to pray. So many people are spewing out hate towards Obama and other Democrats for what just happened instead of falling to their knees and praying for our country. That hate is what caused God to remove his hand of protection from Israel, many times, wouldn't we rather be obedient and pray for our leaders, God blessed leaders and countries living in Sin because of a few who prayed, but right now we have a nation full of Christians who are turning and complaining and crying out against our leaders and bashing him and even spewing scriptures that if you read into more details could really bring quite a bit of harm to him and his family.

Do we as Christians want to be known as the nation who when praying actually prayed curses on our leaders because we were so disgusted?

I don't think so, we want God to bless him and if this is truly NOT right, which many who read this may feel, Personally, I know a few of you are ON government health care already, Does your child get MI child? That's government healthcare, Medicaid, That too is government health care, do you or a loved one get Disability and Medicare, I DO, and That too, is sponsored BY our Government, and I got my bill for my MRI from last month, an $1800 cost less than $130, Everyone cannot be pleased.

As for the abortion issue, the plan is 4 years from being put into action do you know how much can happen in 4 years? Are you really that afraid to let God be God? Remember He hasn't fallen off his Throne in the last two thousand plus years and a lot has happened in that time, I highly doubt this little shake up has him very shook. If he knows the number of hairs on our head, the number of stars in the sky Sextillions, How much more is he prepared to take care of his children in this very small crisis we think we are in right now?

This is going to be a Double Post Day

2010-03-24T00:27:00.001-04:00

First post is short and not so sweet, my head is not being very good lately, and I have been battling with it for a few weeks and not winning. I am not sure how I am going to do this semester in school since I am already having a very hard time focusing When I say hard time I mean when I tried reading the stuff to do school it took me a few hours to answer three questions and I had to take a nap when I was done, I didn't even get past opening the other book. I couldn't read the work, if I pass the class with higher than a C it will be a miracle, but I said that with a few other classes and did really well, so hopefully we can get some better meds in my system ASAP.

I see my neurologist on April 1^st so hopefully he will be able to do something or recommend a different surgeon, I have one in mind, and I will ask him about a different kind of shunt as well, I am just so tired of constant pain ALL the time.

Anyhow, that's it for this post.

An interesting Turn of Events

2010-03-18T16:55:00.001-04:00

This past Monday I went to a Bariatric Surgery seminar on the advice of my endocrinologist, Tuesday I went to the Medical Weight Loss Seminar. I had them All mixed up as for time and even had the day's mixed up I thought my Monday seminar was Tuesday and Vice Versa but that was no big deal, I got to both of them early and sat through them with no MAJOR ordeal (my back always hurts so it's not like it was something out of the ordinary to feel rotten when I left)

Well, the past few weeks my PTC has been flaring like something I would not want anyone else to go through, it has been REALLY bad, I finished the first half of my semester on my back and I honestly have no idea how I pulled off the grades I did or stayed out of the Emergency Room other than the Grace of God, and memory of last year's trip. It was April 2^nd last year I went, and I was in bed for 3 weeks but I really had too much to get done this week to be in the hospital 3 times on TOP of the mass pain…so I prayed through it, I did miss church on Sunday and literally slept through Sunday but I survived and I am so glad I didn't go because while I don't feel 100% better, I do feel I feel better than I would have if I had gone to the ER.

At Mondays seminar, the bariatric surgeon presented his case talked and answered lots of questions and my endocrinologist felt it would be in my best interest to do the surgery first then the medical after, since she will continue to monitor over a period of time, and since no matter how little calories I do I don't seem to lose.

I see the Primary doc on the 25^th for clearance then I see the surgeon for a 3 hour consult on the 30^th it's moving so fast. It will probably be June or later though before I schedule surgery though. The hope is to lose about half of my weight total within the first year. Unfortunately it probably will not get rid of all my health issues, but it should take care of everything except the neurological stuff.

Borrowed with Permission from a fellow Sufferer

2010-03-07T02:45:00.001-05:00

I have been struggling to find words tonight to express how I felt, This Post right here pretty much sums it up…right now I am tired of putting on a happy face and pretending that everything is OK, call it what you will, Idiopathic Intracranial Hypertension, Intracranial Hypertension, Pseudo-tumor Cerebri, PTC, IH, IIH? It's all the same, It's a PAIN…and I am tired of suffering, I feel incredibly whiney right now, maybe its cause my meds are not working and its 2:41am and I am still AWAKE, maybe its cause I am in extreme pain, Maybe its cause I know I need a life back to be able to enjoy Lauren growing up…She is almost 8 and is missing her Mommy because I can't even walk in the grass with her anymore. At one point, this just affected me, NOW it affects, 2 people and two kitties as well…I am very loved, but seeing how it affects them is making this that much harder.

My name is IIH and I am an invisible chronic illness. I am now attatched to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause your head to explode and your vision to dim.

Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Try to have fun now! I also took Sleep from you and in its place gave you Brain Fog - Confusion and Disorientation. I can make you dizzy and sick; fill your ears with constant noise and a whole host of other things that no one else believes. Oh yeah, I can make you feel anxious or depressed too.

If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons. Maybe I chose you for your genes; maybe it was those pills you took, or the virus you never recovered from. Anyway, I'm here to stay! I hear you're going to see a doctor who can't get rid of me; I'm rolling on the floor laughing - tell him to keep trying!

You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, water pills, and sleeping pills, told you are suffering from anxiety or depression, given pills that make you tingle, stuck with needles, scanned, and when they get really desperate they'll drill holes in your head. You'll be told if you just lose weight and eat properly I will go away, told to think positive, poked, prodded, investigated by medical students, and MOST OF ALL not taken as seriously as you feel when you cry to the doctor how depressing life is every day.

Your family, friends and co-workers will listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you are just having a bad day" or "Well, remember you can't do the things you used to 20 years ago". Some will talk behind your back while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a person, and can't remember what you were going to say next!

In closing (I hope to keep this part secret) I guess you already found out…the only place you can get any support and understanding in dealing with me is with other people with IIH.

---------------------------------------------------------
(As taken from Jonathan O'Donnell)

I cried when I read this, I have such a hard time expressing myself, about IIH in particular, and this says it all. To my IH Family: we are in this together!! Love you guys! <3

Can we say Emotional Train Wreck?

2010-03-07T00:19:00.001-05:00

My Brain Hurts like nothing a NORMAL human being has ever experienced. I feel like I have been run over by a freight train, backed over by a Mack Truck, then dropped from the top of the Empire State Building… to say I feel aweful is one of the biggest understatements in history.

Yesterday I felt relief that Dr. Morreale was not willing to put a shunt in, ironically enough, after I wrote that post I prayed some more and realized why I felt relief, it wasn't because I don't want the shunt, it wasn't cause I am afraid of one or more surgeries that may or may not happen as a result. It wasn't because I was because I felt Dr. Morreale was a bad doctor, in fact it was just the opposite, it was something a good friend shared with me. She said a Good Doctor knows when to do surgery, a Great doctor knows when not to.

In other words they know when their skills do not meet the needs. He said flat out he didn't feel he could do it. I knew it before I walked in, I felt it the moment I saw him, he didn't test thoroughly the residents in the ER were more thorough and they were just residents. Anyhow, I think the reality is, HE was not the right doctor, not I am not ready for the surgery. A friend I met off one of my support boards is having a surgery at the Henry Ford down town, I think I may see about seeing her doctor. He knows about a different kind of a shunt for when the ventricles are too small, I may take in some of the literature on the Chiari 0 as well since everyone seems so hesitant to believe my Chiari is actually causing damage, if Dr. Heffez and Dr. Oro have seen it, perhaps they can look at it deeper here without sending me to Milwaukee.

Prayers have been a blessing, Please remember the others who struggle with this disease as well, while it may be invisible to you, the pain we live with on a daily basis is far from easy, the current estimate according to the Intracranial Hypertension Research Foundation is that there are only about 12,000 people in the US with this, now figure, the population of the city I live in RIGHT NOW is about 5,500 people and the township I grew up in has only 9,000 (they have steadily dropped over the years, maybe if I looked when I was diagnosed, they may have had 12,000, lol, I didn't look that hard, remember my head is killing me today) anyhow…that's ONE small town in Michigan on the east side of the state.

I have really felt bad, poor Chris is getting breakdowns every time I turn around, I know its getting to be tap time when I get this way, maybe I can hold out til April and my neuro will Schedule one, if not I will wind up in some random ER, where at least I will get pain meds for a while… my last one was April 2^nd, so I am due.

Still not considered a Shunt Candidate and Chiari is said to be TOO SMALL to cause symptoms

2010-03-05T14:20:00.002-05:00

While I don't mind not being a shunt candidate, I wasn't thinking I wanted one too badly anyhow, after all in the last two weeks I have seen so many failures that I didn't really want someone poking something into my brain just to make it work less, the concept just didn't make much sense to me.

I would like someone to explain to my Leg, Neck, back and arms, that they are NOT supposed to hurt and be numb since my Chiari malformation is too small to cause my symptoms I have…Oh, and my lungs too, since my apnea is being stubborn lately too. That is all…if it's not large enough to be symptomatic, they must all go away.

When I saw the neurosurgeon this morning, I wasn't sure how I would feel going in, on one hand, I knew I was not prepared for a VP shunt, for some reason I just am not comfortable with them (perhaps it has to do with the fact that on two occasions previously I had been told my ventricles were too small to put a shunt in safely) Well today made the third, but this doc gave a different reason why he didn't feel comfortable putting in a VP shunt, he also mentioned that he does NOT do LP shunts because the failure rate is so High.

I listened to him, To put in a VP shunt he would have to use a Pediatric catheter in the brain section as the adult catheter is actually 1mm larger than my ventricles are themselves, The adult Catheter is 3mm in diameter but my ventricles are only 2mm, since my pressures are so high, the pediatric catheter would likely just collapse my tiny ventricles anyhow and cause the need for repeated surgeries and trauma to the brain that he was not willing to risk since it is not even guaranteed to help (my last tap offered no relief).

Needless to say, I felt relief and frustration all in one, On one hand, I realize he is not familiar with the more complex cases of Chiari like mine (I should have known, most docs aren't familiar with the smaller Chiari Malformations causing issues, and I KNOW all the issues I am having are not psychological.)

On the other hand, I was relieved, because I am not in favor of having a shunt in, especially with the PTC/Chiari combo, I have done too much research on how the shunts fail and cause the Chiari to get worse if they are primary not secondary,

Why is it so hard?

2010-02-24T21:57:00.001-05:00

This week seems to be flying by, but this week is not my stressful week. Next week is the one I am not ready for.

For some reason, despite how much I want to be positive, there is an air of doubt in my mind that I just can't get rid of.

I am not sure if its fear of the unknown, the known, or just plain the fact that I am not comfortable with whatever may come next in the journey at this point.

I know I know, I have read all the positive scriptures that say not to fear, but there is just something that is NOT sitting well with me and I have a very Good/Bad history of that gut feeling being right.

Maybe it has something to do with having less than 4 weeks of pain free time in the last 24 months, I don't know. I was actually kind of relieved for the final diagnosis of being glucose intolerant; I have known it for some time, and now. However, I am not looking forward to the echo (why is an ultrasound so traumatic, it's such a simple test compared to say the MRI, lol, yes, it's my heart, but STILL, its non-invasive, and she isn't really all that concerned or at least she said she was just verifying that it was ok 2 years later, Perhaps its cause she is looking for Pressures that lead to the Lungs, which is to check for Pulmonary Hypertension (and my Blood Pressure is ALWAYS High at her appointments, last time it was the lowest ever at 155/85 and she ordered it directly after checking lung capacity which I didn't do so hot at) I just don't know

Then Friday I see the New Neurosurgeon…I DO NOT WANT A SHUNT… DO NOT, you read this, I DO NOT WANT ANOTHER SHUNT am I yelling and screaming like a child? Yes? No? I don't care…at this point I seriously feel the other docs are likely right, I have read the support boards pretty thoroughly, and guess what, NONE of them has had a shunt work longer than a year either. Hmmmm the only success stories, well they haven't had them a year, most are having issues within the first SIX months…I do not want to be in and out of the hospital again and again. Living with the pain is bad enough, but being sliced into every time it fails….I think I would rather suffer… Lauren has already told me she is scared of me having another surgery… and how bad it was when I came home in worse shape than going in, so unless he is willing to look at the Chiari, I am not sure what I am going to do come Friday. I thought I had a grip on what I felt was a right decision, but the more I pray, the worse I feel, and the worse I feel the less confident I feel about this decision, and the less confident I feel the harder it becomes, the harder it becomes, the more I am upset that I am going by myself because I know the decision is totally mine. At least I know I am not scheduling it til May. I can't do it before the end of the semester, since HF doesn't have online capabilities for me to do school while there.

Ugh.

It’s MY Blog and I’ll whine if I want to

2010-02-20T21:57:00.001-05:00

Ok I won't whine for long, I just need to get it off my shoulders and since removing my head isn't an option, and I can't really talk to anyone, it comes out here.

Today has been Very HARD. I have been fighting all day the urge to go to the ER. Everytime I feel a burst of pain that I can't breathe through (mom's think labor contractions during transition) I look at my calendar, today is February 20, 2010 I see the Neurosurgeon On March 5^th, that is 13 days away, I just need to make it 13 more days…

This afternoon I told Chris I needed a Vicodin to take the edge off, and he was concerned about me overdosing, I giggled, for one, I could not take that many, a dose or two to help me through THIS patch is all I would take (last time I had a bottle of 40 it lasted me 6 months) but, the hardest part is he knows that it is not strong enough to do anything besides take the edge off. The reason I am getting to the ER point though is I need the drug cocktail, Morphine (pain) Toradol (Muscle relaxant) and Compazine or Zofran (my preferred anti nausea) just to feel a little better…and unfortunately, even that would take a few rounds just to break the cycle and bring a way over 20+ pain number down to something reasonable. Like a 10, lol…

Oh and lets not forget the hospital would do a spinal tap to bring my pressures down too (not that that helps, it usually makes me feel better for an hour or so then I feel worse for about 2-6 weeks thanks to my brain herniation….thats why my goal is to wait.

I go in in 10 days for the echo, woo hoo. Not looking forward to that either. At least that's not going to make my headache worse.

Can I honestly say I don’t know what to Title this?

2010-02-18T22:00:00.001-05:00

It's not that I am at a loss for words, it's more that there are so many spinning around I can't sort them all out.

When I wrote last week it was one of the roughest weeks I had had in a while, I usually keep those times private, not because I do not want to share them, but because I don't feel most people truly understand what it's like to live with not one, not two, but three or four chronic conditions that are all blamed on my weight. When I talk to other people in my family though, I just do not feel it's all weight related, yes, if I lost the weight, I would feel better, but fact in hand, and medical proof exists, these problems are related to my central nervous system NOT my weight, Oh how I miss the one doctor who REALLY understood that reality, This is the one time I really wish I lived in Canada (yes, I know Canadian Health care isn't all that great either, but the Doc who saved my eyesight and understood that my problems went much deeper than losing the weight (he also recognized that the PTC causes weight gain not weight gain causing PTC, A whole other rant, not for today) is located in Toronto

In two weeks I see the new Neurosurgeon; I can only pray he is familiar with Chiari and the deeper issues within my brain so that I can get to the bottom of the whole mess. Since my last post, I have had numerous close calls with falls, Chris is a wreck, he helps me a lot now because he is extremely concerned, my balance is horrible but I am too stubborn to use the cane around the house, I should be able to walk a few feet without it, at least indoors, I used to be able to and I hate the deterioration.

Today I slept A LOT, I fell asleep just after 11:30pm and slept til 10am, I woke a few times during the night, but that's normal, then we had brunch, which took EVERYTHING out of me, I looked over school for me, went over school with Lauren, and got her working, fell back asleep and slept til 4:45, so I think I was awake for maybe 7 hours total during the day and they were not consecutive. Right now I am glad Chris is home. This is the first day I have gotten to nap, but apparently I needed it more than I thought.

In all honesty, tomorrow I have to make a few calls, and I am truly terrified to make one of the appointments, my Pulmonologist wants a 2D echo, I have not had much luck with tests lately and I don't think I can handle finding any more problems. My head is starting to hurt, I keep laughing at my appointment with my neuro asking if I was feeling depressed, I so wanted to ask him how he would feel if they kept finding more problems with him every single appointment instead of finding the solutions once in a while.

I would love to lose the weight, have been working on it for years, Lost several pounds recently, not enough to make any of my docs happy though. However, my mom, grandma, and all of my aunts are all morbidly obese as well (lets get real here, I come from a family of fat females) Mom and many of my aunts have obesity related health issues, High Blood Pressure, Diabetes, Stroke, Heart Disease, High Cholesterol, you name it. None of them have PTC, Sleep Apnea, Chiari, or any other neurological condition.

Up until THIS last Glucose Tolerance Test, I have NEVER had a high reading in the abnormal range, and I have suspected insulin resistance for years, (I have lots of symptoms of insulin resistance (and none except my mom do) my blood pressure is normal at all but one doctors office, my cholesterol has NEVER been high, I have had PTC symptoms since 1989 (when I weighed a mere 125lbs, which is less than what they expect me to get down to if I were to have bariatric surgery, so I don't expect improvement, since my symptoms started when I weighed less than they ever expect me to weigh) I had a heart attack by an Overdose of A Pain Medicine In a regulated HOSPITAL setting, Had I not been on that medication (which wasn't helping anyhow) my heart would be fine today and I wouldn't be at risk there, my sleep apnea is caused by the PTC and Chiari (since the Chiari is compressing the BRAIN STEM, which houses the Respiratory center, heart rate, and OH Yeah, THE BALANCE center, which explains the constant falls. ) Hmmm, I am a bit frustrated. If this neurosurgeon is not willing to LISTEN, I am calling one in Detroit, I have a recommendation from a girl on a support board, I plan on meeting in person, she lives close to where I used to live before I moved to the country, But we will visit Downtown to the Henry Ford Hospital SOMEWHERE in Detroit (I have NEVER been there) and meet with her doc if this one doesn't listen, I am so desperate for answers and to be normal again, although my hope is more for some semblance of stopping the damage that is happening…right now I know some of it is permanent, I want to keep it from becoming totally permanent and winding up totally paralyzed because this is "elective"

My daughter deserves a mom who can walk outside in the grass and play with her, not someone who can't be touched because she is in constant excruciating pain and enduring just because she feels it's what's best.

Stop the Ride I want to get off NOW!!!

2010-02-12T13:37:00.001-05:00

I am totally exhausted; 5:45am came mighty early today. I woke up and got ready to head out to Henry Ford for my MRI, it seemed really weird having one without contrast, but I was NOT complaining, I hate those things. I am not sure, but I have a gut feeling unless this doc is really good at looking at the old and new stuff, he is going to want them repeated anyhow. Since Dr. Turner ordered it without the contrast, even the tech seemed kind of shocked, after all brain MRI's always use contrast…but since it was a neuro who ordered it she didn't question it.

Well, I was hovering around an 8-9 for my pain level, very low for me, I actually could say I felt good, by the time I left, I had spiked, and now I would say I am more like a 12-15, my eyes hurt my neck is stiff and my back is very sore.

Last night my neurologist called, he wanted me to pick up lab results, I am glucose intolerant, my only normal result was a fasting blood sugar, and it was 105 it was supposed to be between 65-105, so I barely made the cut. My half hour draw was 181, it was supposed to be between 110-170, 1 hour was 186, supposed to be between 120-170, and 2 hours was 159 supposed to be between 70 and 120 My vitamin D is low too, but the reference and stuff on the report is not as clear to me for reading it.

I am just exhausted I felt a little overwhelmed, I was not prepared for those results, I have previously had one result off lots of times but this is the first time I have had all 3 off. The endocrinologist had already prescribed metformin, so hopefully between that and diet we can keep this from becoming full blown type 2 diabetes like mom has.

February has been a whirlwind of change and it’s only been here a little over a week

2010-02-10T10:25:00.001-05:00

Oh my goodness where to start?

I saw my neuro Feb3rd, He is sending me to a Neurosurgeon March 5^th, I have an MRI on Friday for that appointment, he also changed my meds, added Amitriptyline to my list to help me sleep through the pain that's been waking me at night, and ordered some blood work, thought I had Diabetic Neuropathy.

I saw my Pulmonologist February 5^th She is sending me for a 2D Echo (yet to be scheduled), She did a Chest X-Ray and Adjusted my CPAP down to a 14 from a 16.

On February 8^th I met the Endocrinologist, Uhm, that was an interesting appointment, she did an A1C that came out normal, actually a little below normal, However she gave me instructions on HOW to lose weight, and MY family is Rebelling.

There is NO MORE going out to eat, Uh, I figured the person to struggle with that most would be Lauren, but no, it's Chris. I figured I would struggle most with the NO RED MEAT, But no, that's Chris, I figured the NO juice, would Be ME, but no That's Lauren, I like Juice (its replaced Pop for me since carbonation makes me sick.

So what Can I have, Veggies, Fruits, White meats, (Fish, Chicken, Turkey), Oils (in Moderation, which means VERY LITTLE) No solid fats) Lemonade made with 2teaspoons of sugar per 8oz glass (that equals about a quarter cup of sugar per half gallon, I use about ¾ cup lemon juice to that same half gallon)

It is VERY challenging for me, but I think my family is struggling much more, because they don't like change, but I am hoping the benefits to them are great too, in just two days, I have lost another 3lbs. (I have about way more to go, let's get that Wii Workout burning)

So after some very express hurt feelings this morning, Chris is upset with me for actually listening and not going out, and offering him suggestions (he got mad at me for not being willing to go out anyhow) I told him he could fend for himself and I would cook for myself today. I am not going to kill myself for them, and if he wants to kill him and Lauren (who refuses to eat healthy too right now, so beit. They WILL come around.) Especially when his unemployment runs out and there is NO money to go out on. I will not be a part of him throwing the money out on a regular basis ANYMORE.

I am drained

2010-02-05T00:37:00.001-05:00

Literally, I had my blood work run this Thursday morning. I arrived at the lab bright and early got registered, then came the challenges, Dr. Turner ordered a TSH, Glucose Tolerance Test and SED rate along with B-12 and Vitamin D levels…Ok, I am on Medicare with the disability, it's the only insurance I have at this time, so insurance is all HOOPS. Thanks to the hospital I am going through for MOST of my care, they are willing to jump through those hoops for me, since the first 3 tests were not covered with the original diagnosis code, they called the office and went through a list of code until we got one that worked. It was too funny, but they were more than willing to go the extra mile so I was not stuck with a HUGE bill, all but one of the tests is covered IN FULL.

And after FOUR blood draws out of the same vein, miracle of all miracles, 12 hours later I still do not have a bruise, if only nurses could get an IV in that way, lol.

For the first time having the Glucose Tolerance test I had the Lemon Lime instead of the usual Orange or Grape, I am so glad I did, I am not a pop drinker anymore, and I think the orange would have made me sick. I will have results sometime between next week and April 2^nd depending on what the results are.

I had a couple slightly better days but my normal is back, I am so glad my doc looks at the whole picture and says that a good day once in a while is not an improvement. I am so glad he understands how this works, he was proud of the weight loss too despite how it's coming off. We would rather see weight loss based off of changes that did not involve me being too sick to function 4 or more days per week.

An Interesting Day

2010-02-03T11:54:00.001-05:00

I am Guilty.

Ok, I was reminded I haven't posted here but once this year, it's been for a number of reasons, some I will share some I will wait til I have more answers, and right now I just have more questions.

Today I saw my wonderful neurologist Dr. Turner, a God given gift; I was perfectly prepared for most of what he had to say today so this appointment was not a shock. He referred me to a neurosurgeon for a new shunt, we will see where that goes…At this time I do not feel God giving me peace about getting another shunt, but perhaps this is the doctor who will be able to fix the Chiari, if not, perhaps upon meeting him God will speak about the shunt, one way or the other disability requires me to be compliant with seeing my docs and I am going to do that. I am a little apprehensive about this appointment but not nearly as much as I thought I would be. I had to call my neurologist back and get an order for an mri first because they will just require one anyhow, mine are all old and outdated they are about 2 years old and he would order them repeated so they suggested I get them repeated before I see him in March.

Also, I had been falling a lot, balance has been an issue for a while, but about a year ago I noticed my hands and arms going numb as well as my legs, so I asked about this issue too, Dr. Turner thinks this may be due to Diabetic Neuropathy, I was a little taken aback, my last Glucose Tolerance Test was within normal range, as a matter of fact ALL of my Glucose Tolerance Tests except the first one hour when I was pregnant with Lauren have been just within normal range (but barely, hence the reason for Monday's appointment with the Endocrinologist about my weight) Anyhow, that being said he is running a 2 hour in the morning along with some other blood work, if those come back normal I get another EMG Yippee, I do not like those, they are very unpleasant.

It's been a little over 2 years since my shunt came out, (February 1^st) and in the past two years I have seen lots of changes. I have grown in lots of ways, I am learning how to open up to people and share how things are going in real life a little more, I have a few people I can talk to about what is happening with my health. I have a few really good friends that I have learned to confide in both here and online.

I have discovered that despite all I am going through most days I can still do a lot of my favorite things. I am in school still, it's VERY hard on my body, and what used to come so easily, takes much more effort to get done. But I refuse to become a statistic. PTC is not curable at this time, it goes into and out of remission, treatments work for a while, but they do not offer guaranties and they are basically only there to save eyesight not to help with the constant chronic pain.

I have an excellent support system in my husband and daughter, I have friends that I know I can count on if I need them, I have family that I can ask if I have more planning time as they are further away.

Most of all I have someone I am praying for that is going through an almost identical PTC battle and really needs support too, it helps me to pray for her needs as her shunt has potentially failed again, and she may need it replaced, She had her last shunt replaced a few days before my failed revision surgery that led to all of my complications, paralysis, and all that fun stuff, we were approved for disability within weeks of each other and while I have been diagnosed much longer, I was blessed with a working shunt or a remission (or a super high pain tolerance, any way you look at it, God let me not suffer too bad for a nice LONG time in the middle while Lauren needed her Mommy the most, I got to get pregnant and all the way til she turned 3 before I started getting sick again) So the last two years we have been mirroring each other in pain cycles. I keep praying and reading what she is doing and Thank God for the day her friend and someone I had been praying for more than 2 years before that (her daughter has a rare disease too, Christians are not exempt from hardship, my prayer list is long) perhaps one day when I go visit a friend of mine in Ohio we will go to the Columbus Zoo and I will make an effort and meet these two wonderful prayer warriors.

Jeremiah 29:11

Off to a Rough Start this Year, But its Improving

2010-01-02T23:21:00.001-05:00

I can officially say I am feeling a bit better. I never thought Pneumonia would get the better of me. Up until this year I had not had so much as a cold in more than 6 years…I know I am really blessed…yes I have two very rare diseases and the complications that go with them…but you know something, God has given me the strength to survive those.

They do not control me, I survive them, yeah, I have bad days, even a few bad weeks…but for the most part, I still have MY life, my family, and While life is a struggle, and I cannot do a lot of things that normal people can do, I can do a lot that I need to do to survive…I do my best to not let it consume me, some days I spend a LOT of time in prayer to make sure that it doesn't, I cry a lot, God hears the cries of his children…. And if he didn't, where would I be?

Other days, I have it pretty good and actually feel a bit of relief and get something accomplished…this last 3 weeks I had pneumonia (ok I didn't know I had it until New Years Eve, but, it was there from December 16, 2009, when I started sounding like a smoker, but I have NEVER smoked, lol. I had another major fall on December 29, 2009 making it apparent that I needed to go to the doc, despite my fears. He was actually very understanding in my procrastination, apparently it's not uncommon for people with chronic illnesses to miss a new sickness because they are used to the other pain. I didn't notice the coughing and trouble breathing until I had drank a half bottle of Nyquil, and sucked down two bags of cough drops, and a box of Bengal Spice Tea (oh I could Drink that stuff forever, it's so spicy and yummy, but I wasn't clearing up)

Every cough was raising my pressure something terrible, and I was spending hours hacking, I sounded like a seal or a barking dog…My chest, neck and every part of me hurt. My poor doc went deaf trying to hear my lungs (stethoscopes magnify sound and every breath made me cough more) you take advantage of breathing and do not even realize just how important it really is.

He ordered Zithromax 5 days, and I have taken 3 days worth so far and its finally doing something. I will be able to go to church tomorrow, so exciting, I missed last week and I really felt aweful missing. I felt empty missing.

I am excited to be back to my usual…yeah, my usual isn't perfect, but you know what, I prefer not feeling like I am suffocating…I can deal with the headaches, vision abnormalities, falls, those things, I am not sure when or if they will get better, but I am adjusting to them being normal… God gives me strength to deal with them, it's funny how simple cold turned pneumonia was MUCH worse than the daily pain of a Squished Brain from Chiari and PTC. Most people would think it would be just the opposite.

2 Timothy 1:7 (King James Version)

⁷For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.

Just a Few More Days

2009-12-30T02:00:00.001-05:00

Before the $5 Dinner giveaway will be All Gone

Erin Chase the $5 Dinner Mom has been giving away 10 copies a day of her new Frugal cookbook for nearly 2 weeks now, but the offer is almost up.

Her recipes are simple and a lot on her website cater to allergy friendly folks. I found her website while looking up Chiari, of all things, her boys have it. I am not a fan of cooking and Love the simplicity of her meals, the price breakdowns are great, and I can often get the meals for less than her typical $5 price point just by keeping my pantry stocked with sales.

http://www.5dollardinners.com/

Check her out and good Luck.

A happy Lauren

2009-12-24T21:09:00.001-05:00

Holidays are very different around our house compared to most homes this time of year.

We do not put up a tree, but try to have some of our own traditions.
Christmas is a very challenging time for my husband and the longer we are married the more I understand of why he is so adamantly opposed to it…We do not do a lot of it for good sound reasons and some of it we are starting to do in bits and pieces but more towards well. I really struggle with explaining it…

Our biggest dilemma happens to be that we celebrate the birth and death of Christ year round, and we give year round, both to Charities and to each other…so we struggle with the more pagan traditions that surround the holidays, BUT…that being said, I grew up celebrating, and I still like the surprises, and certain family members (including some that didn't start giving until they found out that others were around—exchange gifts every year)

So tonight we gave Lauren One gift…Oh my goodness, you would think that child NEVER gets anything EVER, LOL.

She was SO thrilled, she had No idea it was coming, Not a single solitary clue, it was TOO funny, she was just beyond herself…a simple Kitty in my Pocket, And she was quiet for HOURS…If Only it worked that well ALL year.

An Angel at Church

2009-12-17T15:25:00.001-05:00

S0mehow I guess I wasn't meant to know until now… a couple weeks ago maybe three? I slipped it in my Bible to open at home so I wasn't distracted during service. Well I got home took care of business and I fed Chris We had been having lots of struggles in our marriage, finances, and well just altogether, God had been providing so I didn't think much of it, He always provides and he NEVER fails to come through.

Well, somehow, I had gotten a card from my secret sister in there too and I thought I had opened the other card, I didn't realize that it wasn't the same card, I was getting the paper out to fill out for the 2010 Secret Sisters, and saw the card, I figured it had just resealed itself (that happens in my stuff a lot) I open it up, An Emerald Green Thinking of You Card with no signature at all, I open it up, and out falls a $50 bill) Hmmm, Must be heaven sent, God knew we were going to be really tight this week, While we don't celebrate Christmas with all the trimmings like normal people, we do celebrate New Years and do like to give Lauren a gift or two, this year, she is getting a homemade Tutu and a single toy (and hopefully a Cookbook for kids, since she is learning to cook with REAL foods)

I do not know who gave the card, but I am grateful, I can't say thank you, but chances are, if they wanted me to know, they would have put their name on it.

I have done that before too…when I had money…Its always nice to bless someone secretly, I hope the gifter is as blessed as I feel right now…I feel kind of silly about it sitting in my bible for almost a full month, but it was a pay week it got here, and I almost wonder if I wouldn't have had the full appreciation then since we had the two checks deposited then…today we are approaching the end of the month where finances are the tightest and the need is the greatest (I get my disability

on the 3^rd) so the last two weeks are always the toughest since all of our bills come out the 15-25^th

I am so glad God provides how he does, even when it's sitting there waiting for us.

This week has provided a lot on my mind, a professor of mine from my first time in college passed away this week of Pancreatic Cancer, Penny Mauldin was a very sweet lady who I had for Chemistry back in 1996 at Lee University. Both her and her husband were professors at the school, friends of mine had Dr. Walt Mauldin for Music classes, if I read correctly he is now in a very High role possibly Vice President, I read it at about 2-3 this morning, that is a great loss for the school and the entire community of Cleveland has suffered a great loss losing her, but this gift I received reminded me of a much smaller gift, but just as perfectly timed and Just as secretive.

It was 1995, I was a college student FAR far from home, 12 hours away to be exact, I was 19 years old, I had NO clean clothes, Laundry soap, but no quarters or money to change into quarters for the machines downstairs. I was so stressed. I lived on the third floor of the dorms and would not be going home for another month and really could not afford to hand wash for another month (I walked down for the millionth time, no that's not an exaggeration, to check the mail, I was lonely and I really just wanted to go home…and in my mail box was a letter from my pastors wife…I had grown up in this church, she had known me since the early 80's The note just read that someone wanted to make sure I had enough to meet my needs, it was the first of many gifts I received throughout my stay away from home, I received a laundry allowance when I wrote my thank you back explaining how it was such an answer to prayer, it seems funny now, but I had NEVER heard of George Mueller back then, and now, I read about him and have studied him and his faith and our family has kind of adopted the do not ask, but pray mentality…If God believes we should have it HE will provide…and he Always has.

Move Mountains for Millions

2009-12-17T09:45:00.001-05:00

This morning I received this email from the Intracranial Hypertension Research Foundation, I was elated that they won one of the small grants, but more excited that they now have a chance to win one of the larger ones I will Repost my Face Book Plea on January 15^th to remind people…but above all, this is one of two conditions making my life a challenge EVERY day. I affect Chris and Lauren because while they do not suffer, they see me suffering. They know my limitations…now I was blessed with the complications, and am one of the people whom weight change doesn't seem to make a difference (not stopping me from trying though but I do it for ME, not for a disease)

We did it!

Thanks to your heartfelt words and votes, IHRF was selected as one of the 100 top charities that will each receive a $25,000 grant from Chase and now has a chance to receive a Million Dollar Grant, following Facebook users' voting in Round One of Chase Community Giving.

In Round One, more than 1 million Facebook fans signed up for Chase Community Giving program to support over 500,000 organizations. Eligible charities included 501(c)(3) charities with an operating budget of $10 million or less, serving the general public in designated areas. Round One ended at midnight on Dec. 12 and culminated with a surge of voting in the last week

Voting for the Million Dollar Grant in Round Two begins January 15, 2010 and will last until 11:59:59 p.m. ET on January 22, 2010.

One organization will receive $1 million. Five additional organizations will receive $100,000 each. And the Advisory Board will select additional nominated charities from either round to share in another $1million!

We are so excited and hope you are, too. Thank you for your support and please help us continue to spread the word about IH and IHRF. Together, we can move mountains

When Life Becomes Truly Complicated

2009-12-06T21:25:00.001-05:00

Today was not as bad as the rest of the week has been…my head has been worse than ever this week, no way around that... and I don't expect a change throughout the winter. I am more concerned for a few friends going through this than about myself with the PTC because this has been my life for so long, I know I will survive, but one, her daughter was recently diagnosed, and while she is in remission, no mom wants to see their child suffer the same thing they have, and the other is really just struggling to keep it together while her family suffers from her health... both of these families truly understand what I go through on a daily basis, while I have never met either of them personally, both are Christians and know that without faith this journey would be truly impossible.

Church today was really amazing, in the past I would completely skip the month of December because of the complications the Holidays cause in our family... I am starting to wonder if as Lauren grows that might not be a good idea anyhow.

While service was truly amazing, the message touched neither right where I needed it most, nothing holiday related, I got out to discover stuff that I really do not want nor need to deal with. Lauren and her closest friend are not in agreement about Christmas, because obviously we are not in the majority that does not put up a tree, I do not know if there are others who don't, but we have NEVER put up a tree in her lifetime, or in our marriage.

In our studies this year we were learning where the tree came from, and we studied the Ten Commandments, and well, The two intertwined and it really boiled down and equated to idol worship, needless to say, she is a logical child, and when asked why we do not have a tree, she answered that we do not put up idols in our house. OUCH..., I did not think about it deeply, because we were here last year and no one asked HER why we don't do it... so I didn't think she would be asked this year either. I figured they all knew, most of the parents were aware of the facts that we didn't celebrate, so I basically didn't push it… Lauren does not bring up the topic, she used to ask for a tree and was taught about it because the in-laws keep pushing that our beliefs are wrong... while Boniface claimed the tree as a symbol of Christ, we don't believe that Christ needs a symbol, it replaced a Tree with another tree, and basically, any symbol for Christ is a replacement for him and a stand in instead of worshipping him. I grew up in a church which had a really hard time with people following a man instead of God, many people left the church when the pastor did things that they did not like, because they were following him and he had become their idol. My in-laws spend more time decorating for the holidays and it brings them nothing, there is no joy in their home... If Christ is the reason for the Season, then why, WHY, are people penniless because they overspent?

Why are children busy thinking about what they want? Isn't it supposed to be a season of giving, not of getting?

I am sorry, I may sound very judgmental, but so often, when I see December roll around, I actually regret it, because it brings a lot of sadness to my heart. I Love November, Thanksgiving is my All Time Favorite Holiday, Followed by Independence Day (Which Happens to Be Chris's Birthday) and Memorial Day (our Anniversary many years) and Then Labor Day because it's the start of fall in my mind... religious holidays followed by the church don't serve much meaning because they should be respected and remembered year round.

We teach Lauren about Jesus Birth and Death Together. They are a summary of events that all work together and while they happened 30 years apart the lesson of salvation and who he is comes together best when you connect his birth with his death.

An Interesting Day

2009-11-30T20:39:00.001-05:00

Yesterday we came home from Church and Lauren wasn't acting right, she took a nap that lasted nearly all day… a low grade fever but No other symptoms, slept all night, still no real sick symptoms says she feels fine, she is just tired…Hmm, Mama doesn't buy that, but I will let her sleep until she FEELS better anyhow.

Today I get up, follow my routine, she gets up, and by noon she is napping again, and she slept until after 5, yea, at 8 she is still up, but guess what, she is going to bed within the hour, and she will be ok. The low-grade temp has broken; she is sipping chamomile tea and is feeling a bit better.

On the other hand of the day I checked my face-book I catch up with a few friends on there and got a scare of my life, my darling cousin posts that she will miss an aunt on there…Hmm, I call family, I knew she was in hospice (she is significantly older, mid 90's but, I had spoken to her grandson earlier this week, and was positive I would have gotten a call if she had passed, NOT read it online…anyhow, when I called my parents, no one knew what was going on, and an aunt had asked in reply to her post…so a lot of mess had to be cleaned up… It made me grateful I used common sense and called my family instead of sending a sympathetic email to my cousin (her grandson whom I talk to) The cousin who posted that she would be missed was not close to her or her family, I on the other hand talk to her children and grandchildren and was practically raised with them…so I really needed to step back and pray for a lot of wisdom on how to handle the situation today.

I was extremely stressed out…I know the 6 degrees of separation seems to really show a lot of things for a lot of people, but for me it hit home a lot, I easily could have read that, my grandmothers sister had died, and sent sympathies to two people whom I am close to, Her daughter (whom is already under a lot of stress (her husband just had Heart Bypass surgery a couple weeks ago and has recently lost part of a foot or maybe both feet (I don't recall since the story that has been passed on has been complicated by getting the info from 3 different people and she has been at the hospital and nursing home with him) and her Grandson, my cousin... I talk to my cousin periodically, I don't talk to his mom as often, but his mom is who led my dad to the Lord, who introduced me to Church, and really helped make me who I am.

This very sweet woman is still alive; her children are with her, hospice is there, I pray she has come to know true salvation, beyond religion. Her husband passed about 5-6 years ago, so she is definitely ready to go, I just found the face book post offensive since it was tacky and even more so when I discovered trying to hunt down when she died….that she was STILL alive…I am so GLAD I did not wish her child (fortunately, I am not close to her other children or I might not have had some forethought) or grandchildren

Well In other thoughts,
After having a VERY rough morning, I had a good afternoon, got some stuff accomplished, and now my evening is running on empty I am tired and worn out, I did A LOT of stuff while I felt good and dummy me forgot that my body can only do so much….so when I uhm uhm finished my projects…I started HURTING, lol…Oh well…I will survive.

Bed-ridden? Maybe that should say Couch-ridden?

2009-11-22T23:35:00.001-05:00

For the first time in about 5 weeks I have only left the couch about 4 times today. Usually my pain follows this wonderful little tool on www.weather.com under the aches and pains tabs for arthritis and other ailments that normal people have, but for some reason, this month…well, it hasn't.

Almost daily I have struggled through the pain, but I keep trying to do what needs to be done.

We have started our winter break from school, Lauren is helping with Thanksgiving preparations, we are having a small Family only Thanksgiving, and by family only I mean just the 3 of us…my in-laws want to get together on Saturday or Sunday, Sunday is off limits (I can't handle multiple things in a day) and I am not holding my breath on Saturday since it will all be hinged on how I feel after Thursday (and I am not depriving my family of Thanksgiving dinner ON Thanksgiving)

We will be having a simple healthy Thanksgiving this year, in the past I went all out and made the FULL meal, but this year we are incorporating parts of it into our education and this will be Home-economics for Bug, she will be helping make the meals and will be learning How to stretch Tom as in "Toy Story" from so many years ago "to Infinity and beyond" lol.

Our dinner Thursday will consist of Tom the Turkey, a 21lb bird, purchased for $2 after all discounts were applied from Meijer, Real Mashed Potatoes for Chris, and Jarred Gravy (Since I want stuffing and he does not, I am only mashing 2 potatoes, saves waste, AND temptation) I cheat on stuffing, I doctor stovetop Sage by adding Celery and Onion and use Broth instead of water and bake it, I have been making it this way for 5 years, since Bug and I are the only stuffing eaters, and we only eat it with turkey, I don't mind using the boxed stuff (it's the same as jarred gravy, we don't use gravy with mashed potatoes the rest of the year, but I do have a recipe for Cider au jus that I want to try next time I get some GOOD cider)

For Veggies, We have our Garlic Green Beans, I will also make cranberry relish (Sugar free raspberry jell-o added to Canned Whole Berry Cranberry Sauce, Walnuts, celery and a Whole seeded apple (recipe calls for pineapple, but that's higher in sugar, so I substitute) I freeze all leftovers

I’d Rather Have the Flu

2009-11-18T01:35:00.001-05:00

Ok, frankly I am getting tired of feeling sick and whiny, I do not remember the last day I felt good, and Honestly, if I wasn't married to the most wonderful husband God had picked out for me (isn't it great when you have to quantify that statement because your readers would argue the best man in the world statement because they all have wonderful husbands too?) I wouldn't be able to smile, it makes my head hurt worse.

I do not remember the pain being this relentless for this long since I was in my early teens perhaps about 14ish maybe 15 right about the time I had my first Spinal Tap, so right about the time my pressures started going haywire…just a hypothetical here, but my guess, that's probably about the time the Chiari started acting up but it was likely just a Chiari Zero then, and NEVER would have been caught all those years ago, so the PTC literally may have saved my life…either way, I am getting tired of being miserable and cranky all the time… All I want is a HUG and a Pillow and a shoulder to cry on, someone who understands…I have prayed, I have cried out and I have begged and PLEADED with God to take this away, OH Please, I am so sick and tired of People being Cliché, God will never give you more than you can handle, HA, yes he does, if he didn't, you would NEVER call on him…HE never said he wouldn't give you more than you could handle…He said "My Grace is Sufficient" He Said " Take Joy in your Suffering" HE SAYS, " I can do ALL things through Christ who gives me Strength" Ok, that one is the closest one I can fall back on during my trials and actually say Hey it's in the word…But I can't find a verse that says You won't give me more than I can handle… at least not in my King James Bible…I have looked… I believe he allows us to go through those trials as far as we can trust him to lead us, for him to strengthen us….when we have learned to lean FULLY on him, those trials, stay put or stop for a while, when we are ready, they begin or new ones begin again….without tests, there is no testimony.

Changes are Coming

2009-11-14T00:13:00.002-05:00

Lauren is going to be thrilled to death… For the first time in our 5 year homeschooling history she will get a 6 week bookwork break for the Holidays—

We do not celebrate the holidays like normal people do, so we are going to be doing some major Holiday oriented Unit studies on why we do not celebrate them the way others do. We will be going over quite the variety of materials for Christmas, including the Ultimate gift.

We will also be limiting the number of TEXT books we will be using for her spring semester, I have NEVER liked using books, but this year was different and while we will finish the curriculum we have purchased, I do not think we will buy most of it again, we are not a text book family, and I can see its really held her learning back this year as I have been evaluating where she is and has been.

We started off this year supposed to be starting Second Grade, I did a placement test because we were starting a new curriculum and I wanted to place her in the appropriate level for their curriculum…Lo and Behold, she placed in 3^rd grade and a little higher in some subjects…I was a very happy mom. Unfortunately, while she started off gung ho and worked really efficiently in August, September moved a bit slower, by October I was hearing almost every day, This is boring and I don't like this work… before I get slammed with "you're the boss" comments or emails, remember, I know my child best, and I have looked at her work, I have looked at this work she is doing She is VERY justified in being bored with it and it's just not at her level in any way, even though the book says 3^rd grade some of them even as far as the 4^th month of 3^rd grade, they just do not hold her interest because they are mostly reading, she has been reading for 4 and a half years, I figured since these were 3^rd grade books there would be grammar and stuff in them by now, but this has barely covered nouns and she is bored to tears with basics still.

We will be switching gears to Note booking and using the resources in our text books for this next semester (and eliminating a lot of useless information that she already grasps…so, I will be doing A LOT of hands on work with her, but that's fine with me…it will be fun for us both) We will be doing ONE 2" Binder for 3^rd grade and I will decide if we will do a new one for each grade or what we will do, it will depend on how I like note booking and how it works for us basically, its lap booking simplified, so we will be taking a bit of time to work through a portfolio of sorts…if you read my earlier post, I feel God is leading my heart to prepare, for some reason I also feel at some time in the future he may be moving us and I am not sure where, but if he moves us to a not so home school friendly state, I need a portfolio ready to go, because those records need to be kept for them…yes, Michigan does not require them, but not every state is as blessed as we are.

So, Unit Studies, here we come, Math and Language Arts, Back to the Basics, Here we come, Everything else, can be covered in a unit study, I am not going to try to cover things in individual books, it's too much work and I felt we lost a lot of ground and school became a war, and Frankly, I prefer not fighting a war not worth fighting…She is a smart kid, VERY Smart, so why am I losing the battle here?

Prepare for the future

2009-11-13T22:53:00.001-05:00

Frugal Bloggers Beware...

Ok, a lot has been on my mind, God has been once again laying preparedness on my heart.

The one thing that keeps coming back to my mind though is that my family is not that of just 3, but we have 2 feline companions and I do not feel we are to forget them in our preparing.

I read numerous weblogs that show frugal families monthly budgets which include pet food, but when you look at their stock ups, there is not a single months worth of surplus for their pets... and their oldest children are the age of my only child. This week then, I read this fabulous blog on living off her surplus for 2 full years (mind you this blogger does NOT claim to have pets, but still, they had to live off their food storage for two years, not a few extra weeks here or there)

So I have been thinking, Perhaps, while I am stocking my pantry, maybe we should put up an extra bag of food (we buy a 3 month supply for Zeke and Ebony to begin with) just in case, yes, much more than that would go rancid, but we do keep an extra case of litter so an extra container of food would make sense too…

I would love to learn to live entirely off of storage and am going to start planning meals using my stored food before grocery shopping and using the store to fill in gaps; fortunately I shop sales, use coupons and shop in unexpected places; Dollar General has awesome steals in their Non Perishable foods as do some of the dollar stores... at this point in our lives we have not used food pantries because we have not needed them as of yet. God has provided meat when there was no money, (free Buffalo came when finances didn't) I have always stocked sales when we had money, so even if it wasn't favorite veggies, they were there… (Green beans and broccoli run out before corn and mixed veggies) and I stock and rotate beans like there is no tomorrow and ROTEL tomatoes what I have is not nearly what most families even consider to be enough, but, it's a start. There is always something on hand to make Chili and various other concoctions but, sometimes you have to accept that it may not be what you are in the mood for.

The bad day that WILL NOT end

2009-11-12T02:53:00.001-05:00

I am tired, I am crabby…and my day just does not seem to want to end today, or is it yesterday?

I have had the same headache that won't let up now for going on about 2 weeks (we won't get technical and call it as it REALLY is and say it's been over hum, almost 5 straight years, but we will just give since the last reprieve when I had a drop in level and had a good day slide in, with pain levels evening out, I think it was about 2 weeks ago…anyhow, I am not happy about the pain levels I have been in…its stressing my family to ridiculous levels.

Add in to that today I decided it would be fun to fall through the hole in the floor, mind you, that hole was not there BEFORE I decided it was time to take my shower and get ready for class today, I put it there by walking across the heat vent (which now needs replaced since I fell THROUGH it) Apparently in my graceful lack of balance my heel caught the edge of the vent, I broke about 6 of the slats that protect the vent (from what I am suddenly unsure of, since they certainly didn't protect it from me, nor me from it and now it is a danger to everyone who has to cross it, and wouldn't you know it's the one in the smack center of the house)

Anyhow, after 15 minutes of Chris trying to help me up and stepping on my foot to keep me from falling in the vent AGAIN, Loving husband he is he did' NOT want to see me fall in again…for that I am extremely grateful. I took my shower and headed to class, now, my bad leg has an added limp and is very sore, but I can't tell if I caused more damage or if I reinjured an old injury…needless to say, unless it becomes unbearable to walk on, I am NOT going to get it checked on, and if I do, it will just be the PCP, he will decide if I need to call my neuro and my rehab docs…Gotta love when I lose MY balance…funny thing, I stepped OVER stuff so I wouldn't fall and fell anyhow. I am so worn out from trying to stay healthy I think it's killing me.

Venting

2009-11-01T22:01:00.001-05:00

As I sit here with my pounding headache thinking about today, I checked my email and became very frustrated.

I have come to the conclusion that I do NOT want a shunt regardless of what the recommendation comes at this point. I have done my homework. I have done the Long term research, Angela, an acquaintance in Columbus via a friend I have been praying for her daughter for more than 3 years now (since during her pregnancy) has PTC and has had multiple shunt surgeries LP and VP and the BEST hospital in the Midwest OSU Columbus, by the Best Surgeons, to remain nameless on this blog for personal reasons due to potential readership. Anyhow…Her headaches are back full force WITH a functioning shunt, My pressures went up to 38 with a functioning shunt… if the vision is intact, a shunt may not do any good at all and remission is totally possible without surgical intervention, I and MANY others have experienced it, in fact, my shunt was after having PTC for uhm 3 full years, yes, I had to treat my vision first, but the headaches I learned to live with…just like I am now. The Topamax relieves them somewhat, ya, I know, I am on disability, but get real, I have Chiari, and I have a partially paralyzed leg, It works when it wants to, and that's intermittent at best.

Today, did you wallow in the self pity of your pain or did you do something for someone else?

I know what I did… Do you want to know what I did?

I went and helped teach Children's Church like I do when necessary. We are working on the Beatitudes with our class of 7-9 year olds, they are making Memory cross Lap books and they are coming together nicely.

The lead teacher was getting a gift (just because she is a good friend, and to illustrate the concept of Blessed are those who hunger and thirst for Righteousness sake, for they shall be filled. I made a smelly Jelly jar…

We started with the Pre-fragranced smelly seeds (too much work to add fragrance there or later) and I added the little bit of seeds to the Pint Jar, and asked if it filled the jar, the kids all said NO!

Put a Tiny bit of water in and asked if God could fill us with that little bit? The seeds grew a little…, should have colored and taken pictures, but it was kinda improvised, not really planned ahead

Then we filled the jar with water and finished most of our crossed and looked at the jar before we left, the crystals had completely filled the jar in less than a half hour, the children were amazed that it took almost no time, and we explained that God fills us as completely as we let him too.

We can't wallow in whatever life throws at us, we have to move on and take what life gives us and move on. God can use whatever he blesses us with.

I don’t feel good

2009-10-23T17:26:00.002-04:00

With the flu going around I had some second guessing to do, I thought that’s what was wrong with me, but alas, nope, just more side effects of my meds…I almost wish it was the flu, at least that…I know will come to an end.
I have felt pretty crappy for a while now, and its sometimes kinda depressing, today though, I was reading my emails, I am on a PTC support group, its not very supportive for me, afterall I have had this disease for more than 5x as long as most of the people on this list, and well, I know that from research these people with shunts are in the Honeymoon stage, the average shunt fails within the first 6-18 months, and most of them have not had them in for 6 months total (and many have had repeated failures already…no comment there) ANYHOW…its not a very good place for me to get support anyhow.

Knowing what I know about PTC, Knowing what I know about Chiari, Knowing what I know about shunts, and Praying God will allow me to get the decompression done sooner rather than later, yes, I know its in his timing, but I know the visions said the headaches would stop after the brain surgery, and I have suffered almost endlessly for nearly 20 years now….

So, Here I sit, I read her hopeless, helpless email and I was taken aback, GOD in his amazing way brought me back to his reality for my life RIGHT NOW…Where I am Right now.
I have been at the new church for almost a year, as a matter of fact in just two Sundays it will be a full year.
There is but one thing I miss from living down south…Current contemporary music…I have no musical talent, and have no idea where the music pastors at those churches get the current stuff, but these 3 songs I am about to put on here, REALLY helped me get through the first 5 weeks especially, when I couldn’t get out of the house on my own, let alone go to church or anywhere… NOW, when I feel down, I still go back to them, I rely on their words to bring me back to Gods promises, since often its music, like the Psalms that bring us closest to him when we need it most.

Cravings?

2009-10-20T18:59:00.001-04:00

The Topamax seems to be working to help limit the intensity of the headaches, from a 12 to about a 9 most of the time, on a 10 scale…I know it doesn't sound like much, but it's a big deal to me, I haven't been headache free in more than 5 years, and before that it was only for 3 years and then it had been what, 9+ years before that? Oh, I can't do the math anymore, either way, it has been LONG time that I have had a headache and the last time I was headache free Lauren was less than 2.

Topamax has a few side effects, one of which is weight loss, likely caused by nausea and upset stomach… ok, I think that may have something to do with intolerance of certain foods, I started back on it on October 7, 2009 at night, 100mg 2x a day, I LOVE chocolate, I LOVE carbs, I LOVE certain foods, I LOVED drinking Pop, All of those things have become virtually intolerable to me over the last few weeks.

When I eat chocolate even in small amounts, I feel deathly ill, My stomach just aches and while I don't feel guilty in the sense that I did something wrong, because I know I should never deprive myself of something because I will over indulge if I think it is to be totally off limits, it's ok to have it in moderation… but my stomach seems do disagree.

Carbs, in LOW moderation, VERY low, amounts I can somewhat handle, but they seem to make their exit faster than their entrance, Pop, tastes like I am drinking metal.

My discoveries…Meijer Fruitsations water, Generic version of Fruit2o, about $3 cheaper (frugal me on cheap income and water refusal, I do not like the taste of water unless it's REALLY cold, and even then, it's not my thing, only during the summer, I don't like it most of the time…just when I am thirsty for it…a weird thing, I do like it when I am out, and over juice or pop, but I do not like it over these flavored waters at all) However, this stuff can NOT be frozen like normal bottled water, it concentrates the sweeteners making it TOO sweet when you get to the bottom, so I invested in a water bottle I will load with Ice and top with a water bottle, 24 oz overall, it will stretch and thin, and I am hoping it will help raise my consumption a bit…and I supported Breast cancer, by buying my choice water bottle (it's a pink Breast cancer awareness bottle, with a straw)

I am also aiming for one protein shake a day at least…they are super sweet so I think I am going to try to thin them out a bit too (maybe I will use Milk Ice Cubes, or Ice milk)

Failed Chili and other mealy things

2009-10-19T00:03:00.001-04:00

I have been making Chili since I was a little girl, it's a household favorite, I decided to try a new recipe though since we have become fond of Wendy's chili, NEVER AGAIN, it was so bland, I think Ketchup has more flavor, this tasted like Tomato soup with beans and hamburger, it was BLAND…

To salvage, I will package the soupy mess into quart bags, I should get maybe 8 bags, I will freeze them, when I pull them out, I will add a can of tomato w/green chilis , THANK You Aldi, 45 cents a can to salvage a meal I can afford, and more cumin and chili powder, I won't need to add anything else, there is lots of beans, meat, and saucy tomatoes, just no spice…

For a long time I made detailed recipes for chili and it took forever, It was good, but too much work, a few years ago before my surgery, I canned chili tomatoes, that year we had the BEST chili ever, I had tried canning salsa, but they came out chili tomatoes instead, it was too watery to be salsa, and thickened nicely in chili and all my recipes I use rotels in…and that's just about anything that's not spaghetti sauce.

We like Mexican cooking.

Two days ago, I made a Tortilla soup that I goofed on too, but that came out to die for, I forgot to add the carrots, lowered the carb count, when all was said and done, when I plugged the whole recipe into sparkpeople, the entire recipe had 308 calories, and that didn't count that it made an entire crock pot full. We skipped the tortillas, and used healthier choices…it all worked out much better, was flavorful spicy and delicious.

A week from today I have a Dessert to bring to a church dinner, I chose dessert because I can control what I am making carb wise, I have to watch what I am eating, and its hard to do when others are preparing, and its fall and Chris doesn't like my pumpkin mousse/cheesecake, I am not sure what it is… the recipe says its cheesecake, but I have edited it so much, its not really a cheesecake anymore, its more of a mousse, and I serve the crust on the side…For a dessert, an entire recipe that serves 16 only has 2,219 calories, 374 carbs, 45 grams of fat, and 71 grams of protein…now its not HEALTHY, per se, but if I had to choose, this is definitely a better choice, unfortunately most of its fat comes from cool whip, if only there were a healthy substitute for that texture…Hmm, now to think.

I Just HAVE to Share

2009-10-17T02:56:00.001-04:00

I was thumbing through looking for some copy work for Lauren for this week and next, a dear friend of mine introduced us to Handwriting Without Tears, it's been a great help for us, BUT, it's not really enough writing that's not school related…she has her school work, and that's ok, but I wanted her to have something that was specifically more Handwriting for now, so I was looking for Copy work… but, most of the copy work I found was quotes from secularists, which I guess can be ok, if the child is older and doesn't ask who this is, or what this means, right now my 7 year old does not need to know what some of those quotes really mean…more importantly I can't explain them in a way that she can understand at this point in her life or mine…Ethics messes with the mind and confuses is…J

So Anyhow, I was looking for something that was Exclusively Bible verses…and I found this… The ABC's of the Bible, so Starting on Monday, We are Putting away our Handwriting Without Tears for a Month, and doing Copy Work, 26 Bible Verses worth.

This includes some verses she already knows, some she will be learning this month in Children's church, and some she recently learned in school and was Thrilled beyond thrilled to hear pastor mention in church this past Sunday…Being 7, her attention span is relatively short, I have always wondered how much she gets out of the service since the main question I get is…is it over yet…but this week I got the elbow in the hip, and she was so excited, I hushed her and she looks all dejected, and looks up at me, but mom, I KNOW that verse!, my heart melted, she had done it in school the week before in her bible book for class, and actually REMEMBERED.

So now our new Goal is 26 verses in 26 days, She will earn a reward if she can tell me all 26 verses and their locations at the end of the 26 days SHHH that's a secret, I want her to Hide God's word in her heart, so I may make this a monthly challenge, I liked memory verse challenges when I was a kid, and I always won them, although we had them in church against the other kids, we also had sword searches, which I would fail miserably now with my bible, parallel bibles don't work well for sword searches, two versions side by side make it so much harder, and Bible Trivia games, I knew God's word Backwards, Forwards and Inside out, unfortunately, it took going away to learn exactly what all that meant…I knew what I believed, but I didn't know why til I went to a school whose beliefs were different…not significantly different, but different enough that I had to learn where I stood…Now, I want Lauren to know not only WHAT she believes, But Why, I want her to Know the word Inside Out, backwards, Forwards, and I want her to be able to have that Faith that is unshakable, that I had just a year older than she is now.

Wow, I just realized, I have been a Christian since I was 6 years old, 1 year younger than she is now, my faith was firmed just one year older at 8, when my family became Christians, somehow its easier when you are not living a faith alone…Lauren has asked Jesus in her heart, But I do not think it's that firm faith, kind of like mine was not a firm faith at 6 years old, my actions did not prove I was a Christian at 6, but by 8 it was showing…, I was growing in God's word, I am hoping the same will come for her too. It's been 24 years. Amazing, and to think, all this changed because my dad did something wrong and my aunt took me to church, dad got arrested, and from that God got a hold of him and our WHOLE family dynamic changed.

He pulls us from the muck and the Mire, and molds us into the most beautiful pieces of pottery.

I love the story of the silversmith, when asked how you know how long to keep the silver in the fire, its right when you can see your reflection in it, God is that silversmith, and when he sees his reflection in us, Only then will we be taken from the fire… Lord, help him to see his reflection fast. This fire hurts.

Thanks for all the prayers

2009-10-15T15:00:00.001-04:00

Today is much much better than yesterday was, I do not feel half dead today, and I actually have a little strength, not much but a little.

We worked on copy work for school, I need to find some good notebooking sheets for Lauren so that's my afternoon project, Chris's Tuesday/Thursday class has moved buildings, I do not particularly care for the location but the new parking location gives us a beautiful view to study fall and winter weather for science.

Lauren is not good at sentence writing, she just started writing full sentences recently, so we are going to use copy work and sentence starters to get her wheels turning.

I just read my favorite Blog Dishpan Dribble and today she has a post on cleaning house like a 12 year old, here I am doing exactly like she says, I get so easily distracted and have struggled with this all my life in so many ways and she posted this as if talking right to me, I felt so uhm, guilty, lol, I needed it.

I have never been taught how to clean, I do not even like having my in-laws in my home, my immediate family doesn't bother me, I have tried Flylady, I have tried Messy's Anonymous, I have tried numerous other methods of getting my house clean, I have had people come help me clean. It is an embarrassment.

I grew up in a home significantly worse than mine, we are talking, and my parent's house took nearly 3 days to prepare for even family to come visit. My parents even lost my sister and I due to the fact that they could not keep the house clean while we were growing up.

When I met Chris in 2000, his mom did not keep home either, she still doesn't, while I was not a great keeper of the home, she also did not keep her home well and he was not taught to keep up after himself either, so neither of us had good habits instilled in us at any point in our childhoods. When Lauren was born….Her house was so filthy he was not allowed to take her out of her car seat and place her anywhere but his lap, there was dog crap on the floor, not safe for babies, cats use litter boxes.

Now, 9 years later, I still haven't mastered keeping the home, I still am afraid to have people over, my house is still a struggle to maintain, I can never get it clean enough to make it presentable, and its shrunk over the years, over and over and over again.

I think reading that post really brought some light to my eyes, I have no structure to my schedule, with Lauren I do, I give her specific steps, ONE step at a time, at least with her, I do set certain steps and organize it one part at a time, I do not allow her to get distracted, NOW I have to teach ME not to get distracted. I am ashamed to admit, I still get distracted with all the things like that, But hopefully, thanks to Mrs. Darling, a wonderful Mom who has been a mentor in more ways than one to me, I have learned a lot from this wonderful woman, whom I have been reading for years all the way across the country, I hope I can continue to learn from her wisdom, She is the epitome of the Proverbs 31 woman as the older women teaching the younger to be what God has called them to be.

Homeschooling Comfortably from the couch

2009-10-14T14:59:00.001-04:00

Lauren is enjoying her day doing school while I am recovering from the massive affects of the nasty Topamax, gosh, I thought since we are on day 5 and the affects had been so mild up to this point, unlike last February, that I was going to have it easy this time, boy was I mistaken, ugh…today, I got lost 4 times in my own neighborhood, once heading home from the bank, once I missed a main street that I take to get to where we were going, then I missed the main road to head home, we stopped to grab some lunch and I nearly ended up on the expressway, after three bouts of getting lost, I was not about to risk missing my exit and ending up in Timbuktu.

This is nerve wracking, Chris and I are both stressed out, I am supposed to have class tonight, but I am staying home, my driving skills with the headaches being this bad are just not safe, I will email the instructor and let him know, he is cool, I will ask him to email the questions for next week and be praying that the affects level off by next week.

I will be upping my fluid intake by eating more soups this week, tomorrow I am making Chicken tortilla soup, minus the tortillas, basically a spicy Chicken soup, I will add lots of Peppers and Veggies, the spicy Peppers tend to help with the headaches some, not sure why, but they seem to. I think part of the reactions may be from dehydration as dehydration also seems to increase my pressures as well. It's a catch 22 and I lose either way.

I am so grateful for the ability to home school that I do not need to send Lauren off to someone else to educate her, when I am sick, no one needs to stand at a bus stop and wait for her, no one needs to make sure she is ready at the crack of dawn (noon is a wonderful time to start a day when things need to be done in the mornings, and 8 am is great other days, I love being able to be flexible)

I love how if we have things going on, we can school in the evening, instead of during the day, and when we go up north we can do school on vacation and never miss a beat, we can make a vacation of the lighthouses in Michigan (our plan is to eventually take a trip to every lighthouse in the state, maybe by the time she graduates, we will accomplish that mission.

2 days til my Half Way Point

2009-10-13T14:27:00.002-04:00

Oh goodness, its been a Busy 8 weeks, In 2 days My Marketing class will be over, and I will be SO happy, did I ever mention I do NOT like Marketing AT ALL? I took this class online because I knew how hard it would be on me because I am not easy to be marketed to, I did not realize just how hard I am to be marketed to.

With the exception of the Homeschool stores Gizmos and Lakeshore (which are actually teacher stores not homeschool stores, but since I shop there and I homeschool, they became homeschool stores to me :-D or craft stores, I rarely ever buy anything specifically brand name, and this year was the first time I have EVER bought expensive curriculum for Lauren...EVER, up til this point, I had spent maybe $100 total all together in about 5 years of homeschooling, this year, because I did not know if I have an upcoming brain surgery or not, and I still don't know what Gods plans are, or when they will happen, I wanted to be prepared and bought full years, I will be doing this until I have the decompression and do not have to worry about recovering from traumatic surgery and I can work with at least some planning with her.

This project has been so hard, my brain is just so tired, they put me back on Topamax this week, the side effects haven't been half as bad as last time, I think the reason I got so sick last time is they upped my CPAP pressure from 10-17 the same Friday as they upped my Topamax from 50mg daily to 200mgs daily. I am also trying the Protein shakes at least once a day...
I did some research since all the docs want me to at least consider gastric bypass, I do NOT want to go that route, I just don't feel thats what I want to do at this point, but I will try the diet that goes with it and the combination of the protein heavy diet (basically the pre-op diet) and Topamax, which has the side effect of weight loss, partly cause you can't drink pop, lol and are always nauseas and light headed, but I can live with those this time, I can sit up and I don't feel like death warmed over this time around, we are on day 3, by day 3 last time, I wanted to just have God take me home.

So far, 3 days in, I have lost 6lbs, not bad for someone who struggles to walk down the steps to get out of the house, I miss having good balance, Hopefully when the medicare kicks in I can start Physical therapy again and work on some balance issues again...I think its the Chiari messing with my equilibrium.

The Bypass Diet recommends Flavored waters like Fruit2O, Thats stupid expensive, so I found Meijer and Aldi carry store brands, in Varied flavors, Lemon tastes OK over Ice, but Kinda like Glucose tollerance test drink without it, YUCK, the others aren't bad, 0 carbs, 0 calories, and I am actually getting in about 64 ounces a day, now 64 ounces is not much, but when you figure I was doing good to get in 16 before, thats doing REALLLY good for me....my short term goal is to drink 6-12 bottles a day. I have roughly 225 lbs I want off, so its a long road and in February I will see the endocrinologist and we will see what she thinks we need to do, we will also decide then who the next specialist we will see about my head...since at that point we will have insurance.

My next Dr Appointment is November 4th with Dr. Turner the Neurologist to see how the Topamax is working...Hopefully we will at that point be upping to 400mg daily,

Headaches Out of Control

2009-09-25T13:02:00.002-04:00

School is overwhelming, but I am happy to be there, I had an ethics exam on Wednesday and a Marketing project due Monday, but whats getting the better of me, MY HEAD...I have not had a break from the headaches since mid August when school started...I am trying to do things regardless of the pain but I am finding more often than not I just want to sleep.

Poor Chris will rub out my neck muscles nightly but by morning they are right back where they started, sometimes worse than the evening before, no matter how much we try to relieve the pain it just keeps getting worse.

I do NOT want to go to the ER, but at the same time, I am running out of patience for dealing with constant pain and suffering.

Brings new light to what Christ went through on the cross, He suffered for us, and died, sometimes I wish that this was a terminal illness that it had an end sometime, because at least that way I would know there was an ending coming...right now I do not see an end, and that part scares me to death.

Ugh

2009-09-10T00:02:00.003-04:00

Ok, I have had 3 Ethics classes, Love the teacher, but my body HATES the class...I don't know if its this class in particular or if I have gotten that much worse over the summer....I do not spend much time upright since I feel so run down ALL the time lately, so sitting upright for 3 hours listening to a semi interesting lecture/discussion...which I do participate in, by the way....is not so fun.

I have not felt well since day one, but I am feeling worse and worse as the days progress...today was REALLY rough, Chris and I fought ALOT this morning, to the point I nearly left him at Arby's...I do most of the driving. I just went and sat in the car and cried...man, he needs a job, or something...it was too much...he has been nitpicking at EVERYTHING, and I don't feel well enough for him to be nitpicking...then we fought about going out to eat, then about money, on and on it went ALL day long.

Then I went to class...and let him know I made it, then texted him at our break, and well he asked for Ice Cream, I am 45 minutes away at class and he can't make ice cream for him and Lauren???? He says he breaks the spoons, Like I care, I am not home make it yourself...he actually LET Lauren stay up so I could make them ice cream when I got home, I was beyond furious, so I really didn't talk to him much....He needs to GROW UP and grow up now.

So, My pain is compounded with the pain I am married to, the daughter who is insistant that she knows more than ANY and Every Adult in existance and well I am just tired of it all....

I need a few days off...and if I don't get them, I will likely wind up in the ER because my body will FORCE me to get that time...as it often does. Grr....GRRR

I feel like death warmed over

2009-09-04T16:31:00.001-04:00

Ok, Ok, I know its been a week and last week was really busy, but I slept when I wasn't running Napping alot and I feel so sick its rediculous.
I just want to crawl under the covers and just not wake up anymore. Its TOO much.

And so it begins

2009-08-28T00:24:00.000-04:00

Well with the first day of classes came the first day of Pain, ok not really, but I am miserable, I haven't felt this bad in a while, but we trudged on getting lots of done over the last two days...Now...I am ready for BED.

School Starts Tomorrow

2009-08-25T16:07:00.002-04:00

Ugh, Fall Semester at school starts tomorrow. Somehow after last semester I am not looking forward to it nearly as much as I was in the Winter. I think part of me just thinks its going to be VERY hard on my system. I was doing so-so before I started school and went downhill rapidly after I started in January.

This semester, I am taking one online and one on campus class...Both start tomorrow. Ethics and Marketing. Ethics is on campus...so its a bit more stressful. We are homeschooling full time, we started 2 weeks ago and she is on her first break this week...til Thursday, but Thursday we are picking up some homeschool books (molly from the American Girls collection, or any other american girl...we will likely read through the whole series this semester and next)

Monday through Thursday for Lauren, and I will keep one day free from here on out. We may pick up a PE at the Y from Port Huron. I will talk to a friend and learn more about it....we will also be incorporating field trips....busy busy busy.

Oh Gee, Where do I start

2009-08-18T17:18:00.003-04:00

...pain has been out of control in the heat, stress is abundant, but all in all God is Good, he has made things happen that didn't think were possible.

Monday we are going to can peaches with a friend. She has never canned before so I am going to have fun showing her and letting her taste the results. We will only do one or two canner loads.

School has kept us busy, although I think Lauren is going to be doing way more than a book a month if I don't find a way to slow her down...I don't really want to do that, so we will likely be adding in more stuff. She did a whole weeks worth of work almost again and its only Tuesday.

This week I hope to get to the fair too, I love the Armada country fair. I love seeing the animals and exhibits.

Tired now, my head is getting worse I think I am gonna head to bed early tonight.

Joys of Homeschooling

2009-08-12T14:01:00.002-04:00

Just to get a good laugh I went to the local schools school supply request list.
Hmm, If I have to buy THAT for public schools what do they provide? Dh reminded me a seat, but even that requires fundraisers.

Lauren would technically be in 2nd grade this year, so This is what she would NEED for school.
Pencils (no mechanical pencils) (I bought 30 pencils for 30cents at Office max for our Homeschool, this should last us about 3 years, we also splurged and bought an ever sharp liquid graphite pencil becuase someone is obscessed with pencil sharpeners)
Large box of Crayons (Define Large, 24 is more than sufficient but most schools require 48, no more no less, 48 is $3.99, 96ct (our splurge this year) was $4.99, but a 24 ct, is all of 20 cents a box, I have a nice stash of those (about 8 boxes)
2-3 erasers 99cents
Ruler $1.00 I bought later several 10cent ones that are actually higher quality
Scissors (1.79 for 2 pair)
1-2 Glue Sticks (we do not use glue sticks, but I did pick up regular glue clearanced out from last year for 20cents a bottle at Meijer, Glue sticks are too messy and wasteful)
Pencil box or bag for materials (39 cents I bought 3, but Lauren only gets 1, they aren't for pencils though, they are for index card games)
4 Pocket folders (10cents each except we ONLY get the pronged kind since the other is a waste of money)
4 Pocket folders with clasps
Highlighters What does a 2nd grader need High lighters for?
Spiral notebook 5-15 cents depending on where you get them, we have a stock from several years ago when they were a nickel a piece, but we use them for way more than school
3 Boxes of Kleenex for the classroom we rarely go through 3 boxes of kleenex a YEAR in our home, so what on earth does the classroom need with about 90 boxes of tissue thats 10 per month they are there??? and what does our tax money buy, in MI its certainly not toilet paper, last year some company had to donate that to schools....where does is all go?
A pair of shoes to be left at school for gym class Do I look like I am made of money, that would mean I would have to purchase TWO pair of tennis shoes? or send her to school in dress shoes daily, which wouldn't be a big deal if a Uniform was in place, but its not, so I have to get clothes, and a minimum of 4 pair of shoes for my child for school, 2 pair dress (cause Black and white don't go together) and 2 pair of tennis shoes one to be used for MAYBE one hour per week? Hmm, I don't get it, thats about $40-$80 just in shoes.
Sanitizing wipes (once again where are my tax dollars going? I use good ole vinegar to sanitize at home or lysol, and one can can last me up to 3 months, so 3 cans should last a class room 9 months, why does my child have to provide wipes, which are such a waste of money to begin with? when a $1 roll of paper towels (which the school should provide) and a Spray bottle of cleaner which they should also provide) should clean the desks and surfaces in the classrooms for at least a month, 30 kids, uhm, less than HALF of them should need to provide this...thats almost 3 years worth of cleaning stuff or am I crazy. Cleaner concentrate from my local GFS is about $10, but makes about 10 gallons of sanitizing spray...should last them a while, and they also have the bathrooms for WASHIN their hands, the sanitizer is not healthy on the skin too much.
Box of Ziploc bags (ok, I use ziplocs for toys and such, I also use them for COOKING, but what are they going to use them for in school?)

Needless to say if I have to buy all this for PUBLIC school, why not homeschool, the money I save in buying multiple outfits of clothes (a minimum of 7, so they are not wearing the same thing every day) The stuff I have to buy ANYHOW to send them to school, and the cost of having to pay for field trips and the like...well that just paid for my curriculum (a grand whole $230 for the year, and thats my highest year thus far...we are doing 3rd grade instead of 2nd, and our fieldtrips are mostly free or miniscule in cost, because we are not coming in large groups.

Plus she won't be bored waiting for the teacher to catch up to where she is, she wont have to relearn what she has already learned while she waits for others to catch up...

Someone on my support group asked why we homeschool, lots of people answered, but I guess, I don't have an answer that is clear like others...I homeschool because its what we feel is best....It started me not being ready to give up my baby, then somewhere along the line I realized that God gave me the right and PRIVILEGE to TRAIN my children in his ways, not someone else.
I have had to protect my baby from lots of things, but right now, I am just happy she is mine and we are gifted with being able to teach her anything.

What a week

2009-08-09T20:12:00.002-04:00

Lets see, Last Saturday we brought home a sweet kitten, she isn't so sweet anymore, she is full of mischief but we still love her and she is growing on Zeke too, the 9 year old catten of the house.

Tuesday we had our new fridge delivered, LOVE IT!! it beeps when its not shut all the way and so filling it was kinda annoying because it took a while to transfer everything. THe freezer is wonderful, its packs alot and is actually a little larger than my chest freezer, go figure. Its 6.3 cubic feet and the chest is 5 cubic feet.

Friday we went shoppin to really fill it, I haven't done shoppin like that in a while since my old fridge FROZE things and the freezer couldn't keep things frozen.

I am still recovering from that. Saturday they came and picked up the old fridge, the cash for clunkers cars program has a similar program for fridges and air conditioners...needless to say we were happy to see them come get this beast, the $50 will be directly applied to our electric bill.

I was even able to cook at home last night.
Today its hotter than all get out, feels like temp was 108 after church and actual was about 98...too hot for me.

My pain levels have been extremely rediculously our of contorl. I guess thats what its going to be like til I get in to see a surgeon that wants to FIX these problems.

The kittens are now getting along pretty good, They play and sleep together now, they are very sweet together. Ebony is full of energy though and today has not been good to her.

Overall, I am tired and life has been hectic.

Rearranging while handicapped

2009-08-06T01:28:00.002-04:00

Ok, its been 18 months and the bug has bit me to CHANGE things in our house, A few weeks ago I bought Easy Sliders furniture movers, Hmm, they will get a work out as I make room for everythin to have a home once again.

DTE will be collecting my old fridge on Saturday and we think we may have figured out how to hook up our icemaker without drilling into the water pipe (a trip to HD is in order)

So far though I LOVE my new fridge, tomorrow though, it will get the true test as it gets stocked with Food for our family.

I haven't had that urge to grocery shop in ages, it just takes too muchout of me. I have many things I need though, and a meal plan of sorts in the making, we are trying a Bariatric surgery post op diet until I can schedule my appt with the endocrinologist.

I have my scale now, my measuring cups, and now its time to start cooking agian...Wish me luck, my body has not liked being upright for long.

I have to find foods I can cook in bulk for the week...but not beyond that. I usually have the energy to cook one day a week the rest of the week I struggle like mad to get anything at all done.

My Family Grew

2009-08-02T00:19:00.002-04:00

I went to get a fridge and brought home an adorable 11 week old kitten....The Pet Rescue was at ABC warehouse/Gordons, along with many other companies a big affair, anyhow two kittens were on the euthanize board, and We brought one of the two left so now there is only one, hopefully he will find a home too....Ebony (our 11 week old black princess) is getting along with everyone, except Zeke my 9 year old cat...he is keeping his distance but TRYIng to get used to her.

MY new Fridge will be delivered Tuesday, A french door bottom freezer with ICE maker...I am so excited to have an Ice Maker, we go through a ton of ice in this house.

He Is Still God in the Fire

2009-07-28T02:34:00.002-04:00

Ok, I know I just posted, and its rare to get a double post, but I just keep thinking about this, I am still in prayer mode, its been a really hard few months, and I am playing my favorite tunes....

Even when things seem out of control to us, they are never out of control to him.

God....is ALWAYS in control of whatever comes my way, I feel taken back to camp meeting days, Winterfest, youth camp and prayer meetings in college, where the Holy Spirit fell and the anointing of Gods presence was too much to contain.

I am overwhelmed to see whats coming next, God is in total control, and I look into the scriptures to see that if WE, his people, Pray, HE will do great things...

GREAT THINGS....

A few thoughts, but I know the Master of the Wind

2009-07-28T01:55:00.002-04:00

Today has been emotionally draining, so, when I am having a rough day, I spend alot of time in Prayer...

I have a few verses that really come to heart when I am struggling 1 Peter 5:7 and James 1:3, and Romans 8:28....God really is in this even when it doesn't look like it.

I am so tired of being sick

2009-07-26T22:02:00.001-04:00

Today I went to church, lunch, then slept ALL afternoon, grabbed some light dinner, feel incredibly nauseas, and feel like death warmed over.

I am trying to watch some tv and going to down about a quart of Crystal Light, but my goodness it seems to be killing me slowly...

I don't want to give up, but I am really feeling worn down.

PTC and Chiari really kill the head. I want insurance so I can get the endocrinologist app scheduled.

still struggling

2009-07-25T00:16:00.002-04:00

Well, I am worn down. My head is not cooperating, I am exhausted. My brain is killing me slowly.

Its been a rough week, and I don't know how much more I can take...

Just OFF

2009-07-18T01:53:00.002-04:00

Ok, I am tired of whining, but since its my personal journal, if you don't like it tough.

I am freaking out, my balance has been off on and off for a few months now, but this week its been so bad that Chris has mentioned it. I wobbled with my cane a few times today and that always poses concern..

I have had at least one near fall every week for the last 5-6 weeks. I don't want to go back to the doc til I have insurance (or my next appointment if that comes first) Its just scary to think of what might be happening. My nerve damage seems to be stablizing itself, I am not getting as many shooting pains, but my balance is shot and even sitting up is often a challenge. I am also struggling while driving, I am noticing even my vision seems to go one sided. I will call if it continues, or head to the ER, but I don't really want to do either since there isn't much anyone can do without the insurance.

My new social worker is very nice, she is going back over what the old worker didn't take care of and getting my medical bills taken care of...better late than never. She is also very respectful so that gives me extra confidence in her (and they paid my back gas bill, which wasn't much, but it helped ALOT)

Anyway TRYING to get to sleep not having much luck.
Good Night

Still in extreme pain

2009-07-14T22:20:00.002-04:00

Its gotten so bad I don't remember the last good day I had, I used to get a few here and there, but not lately.

Every muscle and joint and nerve hurts so badly its rediculous.

I want to get something for the pain, but it makes no sense with no insurance....it costs too much.

I am having trouble focussing and thinking straight, my head hurts so bad all day and I am constantly nauseas. I am just scared this is never going to get better.

I think I am going to try drinking more this weekend to see if that helps...starting tomorrow I think I am going to eat less and drink more...lets see if I am dehydrated and thats my issue.

cant catch a break

2009-07-10T20:50:00.003-04:00

Ok this is getting rediculous, I have been drinking, trying to stay hydrated in hopes to kill this darn headache, NOT WORKING....Its starting in my neck and going around BOTH eyes, I get so nauseas and sick I just want to puke.

My balance has been off more than on and yesterday I got lost drivin roads I drive routinely, Frankly I am getting scared. I can't concentrate and am struggling to do ANYTHING at all. I do not like feelin this way, I do not nor will I ever be able to accept this new way of life, this is no life, and no I do not plan on ending it....I get so sick of people asking if I am depressed...NO, I am in pain, and while the two can go hand in hand, I do not feel depressed, I feel frustrated that I can Not do ANYTHING without causing my brain to rebel.

I am tired and going to bed early tonight, I can barely see, actually as I type this I can't make out the letters on my screen, I just know where they are and can feel that I hit too many keys, trying to focus it in is killing me Good Night, praying for some relief tomorrow

Pain Out of my Mind

2009-07-08T16:58:00.002-04:00

Ok, I am tired of this, all afternoon I have been battling a HORRID headache that started at the base of my neck and creeped its way across my face, down my shoulder and its just getting worse, I just took a couple of flexeril in hopes of relaxing the muscles so that it will ease a bit.

I am totally nausesas and really just feel sick. I haven't been like this hardly at all since my tap in April, May and June I had one REALLY bad day each month, so far this is the 2nd one in July, and its only the 8th.

Family is Better, and Much needed Relief

2009-07-06T23:43:00.002-04:00

Yes, Yes, we worked everythin out, I knew we would but I really REALLY needed to vent the other day.

I have been a part of a PTC support group since my last MAJOR flare (after my post-op complications I felt very alone in the journey) Anyhow...
I know my problems are not mostly PTC related, I have done quite a bit of research on lots of it and with the diagnosis of the Chiari last year I started doing even more research....well I am seeing that its more the Chiari issues that I am dealing with, not a huge deal, its life....but my docs all wanted me to get a VP shunt placed last year and needless to say I was not looking very highly into it since its major brain surgery....don't ask why the potential of decompression scares me less, it doesn't make sense to me either.

Anyhoo...On our PTC support group recently we have had Several people get VP shunts, NONE have had truly positive results. One has been hospitalized for a small bowel obstruction (a mere 3 weeks post-op, they claim is unrelated) a second one wound up with a major infection and was basically told to stay away from everything for another month, and a 3rd wound up in more pain from the shunt, headaches worse than before and basically just majorly regretted these decisions.

My docs said unless it started affecting my eyesight they would not consider a VP at this time, the risk outweighed the potential benefits....I was questioning that since I have had very little quality of life ever since the flare in 2007 and before....now, Since none of these people had major vision problems and all had the VP shunt put in with all of its complications, I am seriously grateful for MY doctors who said NO, its not worth the risk at this time.

Ya, I will get sick over and over again and it will cycle, I get about 2 good days a week or so and try to do SOMETHING every day, even if its just to go out, and when my body says enough, I rest and recover....its a cycle I have been living with for many years. I would rather get sick over and over again and have a few good days here and there then suffer not knowing when or where I was going to get sick because of the shunt. I know their failure rates and they are HIGH. If it starts to REALLY affect my vision again, I may consider a shunt, but I will literally have to be going blind as fast as I was when I had my Optic Nerve Sheath Fenestration done in 1998 to consider the VP shunt.

Ok, so now you ask why do I not feel at all stressed about a possible decompression surgery, much much riskier than a shunt, much much more painful, and overall just a harder surgery? Well for some reason, I know its not the time for it right now, and I know the time is coming, I am having drop attacks at least once or twice a week, I still can't navigate the stairs, my balance is still way off, and I am having problems swallowing my meds including the CHEWABLES. I know when the time is right, I will have complete peace over it, like I did when I had my ONSF and shunt put IN, I had a weird sense about the revision, something just seemed very uhm....lets just say I knew in December that something more was goin to happen and the surgery wasn't even scheduled til January 2nd for February 1st.
I am glad God did not tell me what was going to happen, I wouldn't have gone through with it and I would have never found out about the Chiari, probably making it much worse in the process since the shunt would have continued draining even at its slow pace.
I know God protected me then and he holds me now through this and will protect me in the future as we go through this battle....it WILL be ok, GOd is in control.

Grrr

2009-07-04T21:39:00.003-04:00

Chris and I are fighting AGAIN, he is getting on my last nerve, ok, he got on that a long time ago, but its just getting worse and worse.

My headaches are through the roof today because of the stress of dealing with him. All he does is play games and eat. Oh ya, and complain about Lauren or I doing this or that.

Well today he got mad because I said something the first time Lauren kicked her feet, all he does is yell at her, no other discipline at all, and he expects me to "fix" the issues....I can't fix her, half of this is just him being around her so much.

Then while she was being read to tonight she contorted herself to kick me in the face...while that upset him, it made him madder that I yelled at her after the 7th time of her kickin me (I never yell at the first or second incident)
He tells me I am over reacting, the only time he spends with her is when I am asleep or at a doctors appointment and I am over reacting? She may kick him under the table, but I am tired of it all. He is ignoring her whining over not getting to see fireworks, it was her choice, since she got sent to bed for misbehaving, but is he making an effort to support in discipline, NOT ONE.

I am so annoyed right now, ya, its his birthday, but he and her faught on mine too, all day they bickered and over half of our plans blew up in my face. I am just tired of dealing with his crap....HE NEEDS to get a job and get out of the house some. Sitting in front of that game all day is just too much for me.