This has been the month of infections, I just finished my 3rd round this month and still have 9 days to go on my antibiotic ear drops. My second ear infection of the month is finally clearing up, and it was a disgusting oozing mess-though not as bad as the first one of the month. I managed to get an emergency ENT appointment yesterday and was told that I don't have any real hearing loss as of now except for some at a fairly high pitch. He said it may indicate future hearing loss and is something to watch. There were some issues with my left eardrum not moving and looking abnormal, but it is probably just due to some residual pus from the infections and should clear up soon.
Additionally it would seem that my hip incision also was infected. It was draining green smelly pus when I saw the derm last week-he didn't think it looked infected though. When I was started on the antibiotics for my ears it cleared up as well. The derm thinks that my hip probably isn't going to heal without some sort of intervention and is sending me to plastics to get a consult for a scar revision.
Tuesday, April 27, 2010
Wednesday, February 17, 2010
Here it goes again
Oh joy, I have yet another UTI. This one we caught early though and I got on the right abx the first time. Luckily I also have a urology appointment tomorrow and I hope to talk to him either about referring me to someone who has done the botox procedure more than twice and has a better than 50% success rate that or we could get him to talk to Hopkins so when I go there I might see a urologist that has more ideas. His only other suggestion with any merit last appointment was a mitronoff procedure, where they move the appendix to make a tunnel between the bladder and the skin-usually through the belly button.
I started OT again 3 weeks ago with someone that Kevin recommended at the main campus. She is decidedly not my favorite person and I really miss Kevin, but she has seen a lot more EDS and is unafraid to make suggestions and chart things that she sees that are unusual. She says that she has never seen muscles or facia as tight as mine and in several places she can't distinguish between muscle and bone. She has never seen this much tightness with EDS but strongly believes that I have some sort of connective tissue disorder going on but has no idea what it might be. It is strange to have so much tightness in muscles and facia and be so loose in my tendons and other connective tissue. The muscles in my shoulders are so tight that they are subluxing my shoulders when I reach up and the muscles inbetween my ribs are so tight that she cannot distinguish individual ribs and my rib cage cannot expand when I breathe.
My pain doctor is pleased with how much I have been able to lower my pain meds-one good thing at least. We finally heard back from John Hopkins and the geneticist thinks that he needs to start over completely with me and that I really need a good genetic and internal medicine workup and that I will probably be able to get in with him in the next few weeks!! He is unsure if the EDS diagnosis is correct but feels that there are multiple things going on and that they really need to be addressed and soon! I hope we will hear back by the end of the week about when we will go, it is going to be hard because I will have to use my manual chair and forearm crutches to get around as wheelchair van rentals are super expensive and generally not available at the airport. I am so excited that we seem to be moving in the right direction and that there may finally be an answer at the end of this 18 year long tunnel!
I started OT again 3 weeks ago with someone that Kevin recommended at the main campus. She is decidedly not my favorite person and I really miss Kevin, but she has seen a lot more EDS and is unafraid to make suggestions and chart things that she sees that are unusual. She says that she has never seen muscles or facia as tight as mine and in several places she can't distinguish between muscle and bone. She has never seen this much tightness with EDS but strongly believes that I have some sort of connective tissue disorder going on but has no idea what it might be. It is strange to have so much tightness in muscles and facia and be so loose in my tendons and other connective tissue. The muscles in my shoulders are so tight that they are subluxing my shoulders when I reach up and the muscles inbetween my ribs are so tight that she cannot distinguish individual ribs and my rib cage cannot expand when I breathe.
My pain doctor is pleased with how much I have been able to lower my pain meds-one good thing at least. We finally heard back from John Hopkins and the geneticist thinks that he needs to start over completely with me and that I really need a good genetic and internal medicine workup and that I will probably be able to get in with him in the next few weeks!! He is unsure if the EDS diagnosis is correct but feels that there are multiple things going on and that they really need to be addressed and soon! I hope we will hear back by the end of the week about when we will go, it is going to be hard because I will have to use my manual chair and forearm crutches to get around as wheelchair van rentals are super expensive and generally not available at the airport. I am so excited that we seem to be moving in the right direction and that there may finally be an answer at the end of this 18 year long tunnel!
Thursday, January 21, 2010
And the Suck continues
We are still waiting to hear from Hopkins, they have gotten my records and are reviewing them now. The person Mom talked to said that the internists are booking 4 months out so I may not be going as soon as we hoped. Last week I had a physical with my PCP and she was at a loss about what to do. She asked if I thought I could keep going on like this and I told her yes it's not like I have a choice. I don't think I can keep going though. It has been almost a week since my stomach has been able to digest anything more solid than a banana. My nausea is better than earlier in the week with my doubled steroids. But they give me a horrible headache and stomach ache no matter how much I try to eat with it. My hip injection is wearing off and I have had a really bad week joint wise. I'm too tired, all I can do is drag myself out of bed for a few classes and crawl back in.
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.
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