Monday, December 28, 2009
Eventful Day
Today I had my BXS (bone density scan) at invision and it was uneventful apart from running 45 minutes late and almost getting run over by a short lady on her cell phone determined to beat us out of the elevator. We went to CPK for lunch with plans to hit Barnes and Nobles and get Mom's blood drawn after lunch, this was foiled by a car that wouldn't start...at all...just made a clicking noise in the glovebox region. So an hour and a phone call to AAA later a tow truck showed up driven by a very happy dirty long haired man with slightly slurred speach and a rather stoned expression on his face. He also only had one seat belt in the cab besides his own (we were supposed to ride back to town with him) not to mention that to get in one practically had to climb a ladder with the rungs impossibly far appart. We decided to hoof it to the mall and hit the Borders there and wait for Dad to get off work and come get us. By the time we got to the door of the mall I was ready to fall over, and by Borders I was struggling to put one foot in front of the other. Dad got off 2 hours early so he could get us thankfully and we escaped in one peice (mostly) with new books!
Sunday, December 27, 2009
Looking back on 2009
January began the GI bleeding issues to which we still have no answers
February a new round of MRI's and other GI tests
March and ER trip and pneumonia
April is when Dr. Soden (GI) came into our lives and brought Dr. Ellias(GI), I had a skin biopsy and more abdominal CT's and ultrasounds
May I had my first colonoscopy and second skin biopsy (because the first wouldn't grow out which they had only seen one other time in 14 years), the surgeon freaked out and ended up not really doing it because she was afraid of tearing something
June I had my final period and started the process of getting my power chair, we also scheduled a date to get the screws removed from my hip
July the screws were removed from my hip and what was supposed to be a simple outpatient procedure turned into a week in patient for pain control; while I was inpatient I also had a capsule endoscopy which never left my stomach and finally started moving the day before it was scheduled to be surgically removed. During this month I began having worse nausea and began having to take nausea and pain meds around the clock and had a bad UTI.
August brought breast milk and more nausea and no period
September a colonoscopy and endoscopy with a capsule endoscopy placed, another UTI my power chair came in and made my life
October was filled with general feeling like crap, the questions of seizures, and a diagnosis of adrenal insufficiency
November was more ugh with a negative EEG and a switch to hydrocortisone from predinisone I was finally able to decrease my opana from every 4 hours to every 6
December was/is super crappy with doctors shrugging and not really caring or knowing what to do, I tried to decrease my zofran from every 6 hours to every 8 (still keeping phenergan every 6) and was retching constantly went back to every 6 (at the same time as the phenergan every 6) still wasn't enough, I had to shift it back to in betweeen predinisone doeses.
February a new round of MRI's and other GI tests
March and ER trip and pneumonia
April is when Dr. Soden (GI) came into our lives and brought Dr. Ellias(GI), I had a skin biopsy and more abdominal CT's and ultrasounds
May I had my first colonoscopy and second skin biopsy (because the first wouldn't grow out which they had only seen one other time in 14 years), the surgeon freaked out and ended up not really doing it because she was afraid of tearing something
June I had my final period and started the process of getting my power chair, we also scheduled a date to get the screws removed from my hip
July the screws were removed from my hip and what was supposed to be a simple outpatient procedure turned into a week in patient for pain control; while I was inpatient I also had a capsule endoscopy which never left my stomach and finally started moving the day before it was scheduled to be surgically removed. During this month I began having worse nausea and began having to take nausea and pain meds around the clock and had a bad UTI.
August brought breast milk and more nausea and no period
September a colonoscopy and endoscopy with a capsule endoscopy placed, another UTI my power chair came in and made my life
October was filled with general feeling like crap, the questions of seizures, and a diagnosis of adrenal insufficiency
November was more ugh with a negative EEG and a switch to hydrocortisone from predinisone I was finally able to decrease my opana from every 4 hours to every 6
December was/is super crappy with doctors shrugging and not really caring or knowing what to do, I tried to decrease my zofran from every 6 hours to every 8 (still keeping phenergan every 6) and was retching constantly went back to every 6 (at the same time as the phenergan every 6) still wasn't enough, I had to shift it back to in betweeen predinisone doeses.
Friday, December 4, 2009
Running out
I saw the GI on Wednesday and he was unhappy with my progress (or lack there of) and doesn't know of anything more he can do for my nausea. I have vomited three times in the last week at school so what we are doing now is clearly not working. He is frustrated with my endo and primary care because it is obvious that there is something more than just the AI going on, but they don't seem to be that concerned. He tried to play the depression card and when confronted about it he said that when doctors don't know what something is then its time to blame it on some sort of mental illness (we already know that they try this and they have been majorly wrong more times than I care to count). He then said that I have enough physical symptoms that it probalby isn't depression (after we offered to give him my therapist's name who would happily chew him out for suggesting it again) since it wouldn't cause me to have low estrogen prolactin and an abnormal brain MRI.
He suggested that our next step is to try some place out of state. His preference was Mayo clinic,but seeing as our insurance won't cover it we are out of luck. Cleveland clinic isn't covered there either, but I'm not sure I would want to go back after my experience with the senile Dr. Stanton-Hicks all those years ago. He called the day after my appointment because he couldn't sleep the night before 'cause he was worried about me. He called my geneticist and talked with her about going out of state and is planning on comming to my genetics appointment later this month so that we can get a plan together. I don't think she is as on-board as my GI and thinks my problems aren't real because I didn't have a seizure in the 15 minutes I was alseep for my EEG. In fact she didn't even realize I had the bladder pressure tests and that they showed that my bladder is basically just a giant bag. So she kind of sucks.
The wound clinic appointment on Wednesday was unpleasant. You put on EMLA cream an hour before and cover it with tegaderm so that it is nice and numb for the debreidment. Unfortunately local anesthetics don't really work on EDS'ers and he didn't particulary beleive me, that is until he was slicing open my already sore and inflamed incision and I was clearly feeling every scalpel slice. Then it was packed with collagen to provide a foundation for it to heal and covered with a silicone dressing. Hopefully I won't prove allergic to this dressing-I have already proved to be allergic to the 100% silicone foley catheters and by allergic I mean giant blisters inside and out-he insisted that it had to be some sort of coating that I reacted to and that this would be fine. We will wait and see, hopefully I won't end up with a bigger problem than I started with.
He suggested that our next step is to try some place out of state. His preference was Mayo clinic,but seeing as our insurance won't cover it we are out of luck. Cleveland clinic isn't covered there either, but I'm not sure I would want to go back after my experience with the senile Dr. Stanton-Hicks all those years ago. He called the day after my appointment because he couldn't sleep the night before 'cause he was worried about me. He called my geneticist and talked with her about going out of state and is planning on comming to my genetics appointment later this month so that we can get a plan together. I don't think she is as on-board as my GI and thinks my problems aren't real because I didn't have a seizure in the 15 minutes I was alseep for my EEG. In fact she didn't even realize I had the bladder pressure tests and that they showed that my bladder is basically just a giant bag. So she kind of sucks.
The wound clinic appointment on Wednesday was unpleasant. You put on EMLA cream an hour before and cover it with tegaderm so that it is nice and numb for the debreidment. Unfortunately local anesthetics don't really work on EDS'ers and he didn't particulary beleive me, that is until he was slicing open my already sore and inflamed incision and I was clearly feeling every scalpel slice. Then it was packed with collagen to provide a foundation for it to heal and covered with a silicone dressing. Hopefully I won't prove allergic to this dressing-I have already proved to be allergic to the 100% silicone foley catheters and by allergic I mean giant blisters inside and out-he insisted that it had to be some sort of coating that I reacted to and that this would be fine. We will wait and see, hopefully I won't end up with a bigger problem than I started with.
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