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.
Saturday, November 14, 2009
Grr
We finally found someone who actually cares about my quality of life. On Wednesday I saw a new rheumatologist who doesn't think that it is okay that I don't have energy to socialize or go to school full time or always hurt and feel like crap. He thinks that there should be something that encompasses all my issues not 5 million diagnosis; that chronic pain is bad and should be treated (not labeled as fibro and told to exercise and that it doesn't really exist); that prednisone is a quality of life drug and I should be allowed to have as much of it as I need to be comfortable; and that we should be worried about protecting my joints instead of waiting until they get bad enough to warrent surgical intervention. He is going to do research and talk to my other doctors, all in all we finally have someone who gives a damn about my quality of life.
Yesterday I had an EEG at Childrens and was forced to get only 4 hours of sleep the night before which meant going to bed at midnight and getting up at 4. I was surprised at how easy it was to get up in the morning and stay awake and fairly entertained until it was time to go to school. There was some sort of convention going on at the hospital, so all of the parking was taken by non-patients and all the patients had to use valet. So Mom dropped me off at the curb and went off to find a space while I got checked in. When I told them my name and appointment time they asked if "she(the patient) was with me" and were quite stunned when I said it was me. When they called me back the technologist seemed to want Mom to accompany me, but I declined. She treated me like a two-year old at first (which is weird because that usually doesn't happen at Children's) and ended every sentence with dear or sweety. She asked about my AFO's and I replied that I have EDS and she gave me a funny look, but didn't ask what is was or say anything about it.
As we progressed she started to treat me a little more like an adult and then proceded to complain about the arthritis in her back, how she got inflamation from the anti-inflamitories and couldn't take them any more, and then they gave her vicodin for it. She just rambled on and on about it and how much it sucks to be old and poor her and her arthritis. I really wanted to say, so what all my joints hurt all the time and will ALL have arthritis before I hit my thirties. It is ridiculously unprofessional to be compaining about your arthritis to kids who are in for EEGs and all the other stuff they see at Children's.
Yesterday I had an EEG at Childrens and was forced to get only 4 hours of sleep the night before which meant going to bed at midnight and getting up at 4. I was surprised at how easy it was to get up in the morning and stay awake and fairly entertained until it was time to go to school. There was some sort of convention going on at the hospital, so all of the parking was taken by non-patients and all the patients had to use valet. So Mom dropped me off at the curb and went off to find a space while I got checked in. When I told them my name and appointment time they asked if "she(the patient) was with me" and were quite stunned when I said it was me. When they called me back the technologist seemed to want Mom to accompany me, but I declined. She treated me like a two-year old at first (which is weird because that usually doesn't happen at Children's) and ended every sentence with dear or sweety. She asked about my AFO's and I replied that I have EDS and she gave me a funny look, but didn't ask what is was or say anything about it.
As we progressed she started to treat me a little more like an adult and then proceded to complain about the arthritis in her back, how she got inflamation from the anti-inflamitories and couldn't take them any more, and then they gave her vicodin for it. She just rambled on and on about it and how much it sucks to be old and poor her and her arthritis. I really wanted to say, so what all my joints hurt all the time and will ALL have arthritis before I hit my thirties. It is ridiculously unprofessional to be compaining about your arthritis to kids who are in for EEGs and all the other stuff they see at Children's.
Thursday, October 22, 2009
Waiting
Increased prednisone, trying to decrease back down to management dose, still flaring time to try a different steroid.
Hip injected Friday, lots of scar tissue made it difficult, still waiting for it to kick in.
EEG Friday, have to go to bed at midnight and wake up at 4 then stay awake till appointment at 2:30.
Hip injected Friday, lots of scar tissue made it difficult, still waiting for it to kick in.
EEG Friday, have to go to bed at midnight and wake up at 4 then stay awake till appointment at 2:30.
Tuesday, October 13, 2009
Infections, test results, and lab canceled tests
After feeling lousy all week I finally realized about 5pm on Sunday that I had a bladder infection so we headed off to the urgent care and got a script for an antibiotic. It seems like I have the wrong antibiotic since it isn't getting better as fast as would be appreciated. The culture came back yesterday and it is the right one, the staphf proved susceptible to cipro. Some of my endocrine tests came back and my estrogen and a few others are super low, which indicates a pituitary tumor. The lab canceled one test because there wasn't enough blood but didn't tell my doctor for three weeks, so we have to get that redrawn and wait for the results before we do the MRI to look for a tumor. She is also checking me for congenital adrenal hyperplasia because it could be accounting for my nausea, so on Monday I will be having a cortisone stimulationtest at sweedish. My MRI of my hip finally came back and I have inflamation in the miniscus and acetabular tendon, which is something that we can't really do anything about.
Next Week:
Monday Cortisone stimulaton test 4 hours and blood work
Tuesday: Lumbar MRI and urologist
Wednesday: Hip surgeon and dentist
Next Week:
Monday Cortisone stimulaton test 4 hours and blood work
Tuesday: Lumbar MRI and urologist
Wednesday: Hip surgeon and dentist
Wednesday, October 7, 2009
Different Doctors Different Opinions
I saw my urologist at Childrens last Thursday and as a result we decided to stick with him until I have to transfer out of the system. He thinks that all the test the other guy wanted to do are unnecessary because they won't change what we are doing now and will likely just cause more problems. Because of my increased UTI's he wants me cathing twice a day which sucks, but eventually might get me off detrol and valium.
We got the letter Dr. Elias sent to my PCP and she said that my hip is healed and that I have keiloid scars and that the scars on my arms (which are definately the typical cigarette paper scars of EDS) look like psoriasis. Plus she said that I most likely have a very mild case of EDS, yeah right! Clearly she hasn't read my PT or OT notes or remembered my physical exams. I score a 8 on the beighton scale and I have sores that haven't healed yet after years! I see another specialist in that clinic today that specializes in transfering kids out of the Children's system so we will see what she has to say about that. I may end up going to Baltimore to see Dr. Francomono after all since no one here really knows what to do.
We got the letter Dr. Elias sent to my PCP and she said that my hip is healed and that I have keiloid scars and that the scars on my arms (which are definately the typical cigarette paper scars of EDS) look like psoriasis. Plus she said that I most likely have a very mild case of EDS, yeah right! Clearly she hasn't read my PT or OT notes or remembered my physical exams. I score a 8 on the beighton scale and I have sores that haven't healed yet after years! I see another specialist in that clinic today that specializes in transfering kids out of the Children's system so we will see what she has to say about that. I may end up going to Baltimore to see Dr. Francomono after all since no one here really knows what to do.
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