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

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

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

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)

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

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?

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

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???

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?

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

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.

 

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

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

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

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?

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

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…

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