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.