Today I had my second infusion, I had the same nurse who successfully got the IV in last time, but she was unable to this time. Instead the only nurse who didn't stick my last time, got me this time. The first attempt the vein blew for no apparent reason, the nurse kept commenting on how "this isn't normal" and "[she] didn't do anything that should make it blow" also my veins apparently go deeper when you flick them rather than popping to the surface. They had to use the same needles they usually use on premies and are going to order me a box of them to take up to college with me since the medical center up there is an adult hospital. The infusion took 3 hours, but it seems to help so it is worth it.
Unfortunately I appear to be in somewhat of an autoimmune flare as my nausea is getting bad again and I am having some chest pains when I walk around accompanied by an even more rapid pulse than normal (146) and increased blood pressure (I am normally pretty low and am now high which is a huge jump). Hopefully my labs will come back okay and I will be able to titrate up on my methotrexate so we can get my symptoms under control.
Wednesday, December 29, 2010
Sunday, December 26, 2010
Long Update
So I know it has been practically forever since I last posted so I will do my best to preform as accurate an update as possible:
July: third hip surgery, this time a revision of my right hip "scar", this is usually an outpatient surgery but because of my EDS, AI, and autonomic issues they decided to keep me overnight and because of nausea after surgery it turned into a two night stay and probably should have been longer but they got tired of dealing with my meds and sent me home despite the fact that I couldn't keep anything down. On the plus side we added Reglan to my regimen of nausea meds and it has helped quite a lot and my incision is about 80% healed which is way more than it has ever been before.
August: Started school again (last semester)
September: Started to question whether or not I would be well enough to attend college
October: saw the famous Dr. Francomano, confirmed the EDS diagnosis (somewhere between types II and III she said to call it type 2.5) abnormal neuro exam coupled with symptoms suggested Chiari, Tethered Cord, or Cranio Cervical Instability (CCI): to begin wearing cervical collar for 15 min 4x a day and see a neurosurgeon. The cervical collar and cervical traction relieved some symptoms, but can't wear collar all the time
November: MRI comes up negative for everything, I was crushed because it means that my issues are dysautonomia which has no cure or really even treatment beyond what I am already doing (or so we thought). I was started on methotrexate (a mild chemotheraputic) at the end of the month for my Undifferentiated Connective Tissue Disease (autoimmune disorder) had to learn how to give myself injections for this one
December: Graduated from high school! Phone follow up with Dr. Francomano reveals that because of the fragility of EDS tissues, abnormalities do not always show up on MRI, she believes I have occult tethered cord and, because of the helpfulness of the cervial collar, CCI; it is even possible to have an occult Chiari. She also recommends getting one liter of IV saline once a week to help with autonomic symptoms. Rheumatologist wants me to go to the NIH (National institute of health) and Dr. Francomano wants me to see a neurosurgeon in Baltimore.
Fast forward to now:
On Thursday I got my first saline infusion, it took all four nurses on the floor and five sticks to finally get the IV in. They are not used to missing and were about to call in the flight for life team to try and get the IV in before one of the nurses finally got it in my wrist (ouch). The weird thing though was that I could hardly feel them digging around in the veins in my hands. It used to hurt terribly when they did that and I could barely tolerate it, but now it hardly bothered me. Mom was really concerned by this and we are left wondering if it is another neurological change or if my threshold for pain has just increased that much. My geneticist at Children's mis-wrote the order for the amount of time the saline was supposed to go in, but luckily we caught it in time and they believed us rather than the order, plus they had to use such a tiny gauge needle that they couldn't run the infusion very quickly (you aren't supposed to run an infusion in and EDS'er at more than 500mL an hour unless it is an emergency because it can cause the vein to blow or stretch it out significantly). The idea behind the infusion is that is increases blood volume, because EDS veins are so stretchy our bodies tend to believe that they don't have enough blood pressure or volume contributing to autonomic symptoms.
I don't know how long I will be able to do the infusions either because of my veins. I currently have one vein that can support a peripheral IV and if it is anything like the others, I have used up my one shot with it. The nurses asked about a PICC line, but those only last 6 weeks max and I will probably need the infusions for the rest of my life. Because of the way I heal and my allergy to silicon AND the methotrexate a central line is out of the question and a port could cause me to end up with yet another non healing wound. I know the EDNF recommends ports and central lines to people getting more than one IV and/or blood draw a month, but I heal so poorly that no surgeon is going to touch me.
We were the last ones out of the infusion center and the nurses were all wonderful, they wanted this to work for me as much as I do. I am feeling better and haven't nearly passed out since I got the infusion. My nausea is also much improved (not sure if that is from the methotrexate or the infusion) to the point where I am down to every 8 hours from every 6 on my zofran. I am scheduled to go back next Thursday, but after that I am up at Greeley and we have no idea what we will do then as I cannot drive and we have yet to find someone who can drive me to appointments and just generally check on me and be an emergency contact for when I fall and can't get up or dislocate something and need help pulling it back in place.
I was supposed to have an appointment with a new neurologist on Monday, but they called and said that they didn't want to see me and that I should go to University Hospital instead. They also faxed us back a copy of my summary sheet highlighting psycosomatic and opana (a narcotic) on it. They apparently didn't read on to see that my knee pain was not psycosomatic but a plica pulling my fat pad into the joint, squishing it to the point where most of my fat pad had to be removed. The nurse claimed that I was too complicated, but the fax we received contradicts that a bit. I hate that they sent that fax because now I am really anxious that I am about to go down that "it's all in your head" path again and that I will loose the allies I have gained and will be stopped from getting my infusions and the methotrexate.
This is horrible timing too because I am supposed to start college in two weeks and as things stand right now I am not sure I am going to make it. The university won't let any employees of the school help me get my joints back, the RA can't even come help me get off of the floor if I fall, all they can do is call 911 which is totally unnecessary for a simple dislocation or subluxation. I can't advertise that I am looking for someone to help me with laundry and call when I am in trouble either. I am going up with no support system in place or even a way to find one. I have no idea what to do! And if I start and have to drop out, that looks bad for when I want to start again because there is no medical withdraw.
July: third hip surgery, this time a revision of my right hip "scar", this is usually an outpatient surgery but because of my EDS, AI, and autonomic issues they decided to keep me overnight and because of nausea after surgery it turned into a two night stay and probably should have been longer but they got tired of dealing with my meds and sent me home despite the fact that I couldn't keep anything down. On the plus side we added Reglan to my regimen of nausea meds and it has helped quite a lot and my incision is about 80% healed which is way more than it has ever been before.
August: Started school again (last semester)
September: Started to question whether or not I would be well enough to attend college
October: saw the famous Dr. Francomano, confirmed the EDS diagnosis (somewhere between types II and III she said to call it type 2.5) abnormal neuro exam coupled with symptoms suggested Chiari, Tethered Cord, or Cranio Cervical Instability (CCI): to begin wearing cervical collar for 15 min 4x a day and see a neurosurgeon. The cervical collar and cervical traction relieved some symptoms, but can't wear collar all the time
November: MRI comes up negative for everything, I was crushed because it means that my issues are dysautonomia which has no cure or really even treatment beyond what I am already doing (or so we thought). I was started on methotrexate (a mild chemotheraputic) at the end of the month for my Undifferentiated Connective Tissue Disease (autoimmune disorder) had to learn how to give myself injections for this one
December: Graduated from high school! Phone follow up with Dr. Francomano reveals that because of the fragility of EDS tissues, abnormalities do not always show up on MRI, she believes I have occult tethered cord and, because of the helpfulness of the cervial collar, CCI; it is even possible to have an occult Chiari. She also recommends getting one liter of IV saline once a week to help with autonomic symptoms. Rheumatologist wants me to go to the NIH (National institute of health) and Dr. Francomano wants me to see a neurosurgeon in Baltimore.
Fast forward to now:
On Thursday I got my first saline infusion, it took all four nurses on the floor and five sticks to finally get the IV in. They are not used to missing and were about to call in the flight for life team to try and get the IV in before one of the nurses finally got it in my wrist (ouch). The weird thing though was that I could hardly feel them digging around in the veins in my hands. It used to hurt terribly when they did that and I could barely tolerate it, but now it hardly bothered me. Mom was really concerned by this and we are left wondering if it is another neurological change or if my threshold for pain has just increased that much. My geneticist at Children's mis-wrote the order for the amount of time the saline was supposed to go in, but luckily we caught it in time and they believed us rather than the order, plus they had to use such a tiny gauge needle that they couldn't run the infusion very quickly (you aren't supposed to run an infusion in and EDS'er at more than 500mL an hour unless it is an emergency because it can cause the vein to blow or stretch it out significantly). The idea behind the infusion is that is increases blood volume, because EDS veins are so stretchy our bodies tend to believe that they don't have enough blood pressure or volume contributing to autonomic symptoms.
I don't know how long I will be able to do the infusions either because of my veins. I currently have one vein that can support a peripheral IV and if it is anything like the others, I have used up my one shot with it. The nurses asked about a PICC line, but those only last 6 weeks max and I will probably need the infusions for the rest of my life. Because of the way I heal and my allergy to silicon AND the methotrexate a central line is out of the question and a port could cause me to end up with yet another non healing wound. I know the EDNF recommends ports and central lines to people getting more than one IV and/or blood draw a month, but I heal so poorly that no surgeon is going to touch me.
We were the last ones out of the infusion center and the nurses were all wonderful, they wanted this to work for me as much as I do. I am feeling better and haven't nearly passed out since I got the infusion. My nausea is also much improved (not sure if that is from the methotrexate or the infusion) to the point where I am down to every 8 hours from every 6 on my zofran. I am scheduled to go back next Thursday, but after that I am up at Greeley and we have no idea what we will do then as I cannot drive and we have yet to find someone who can drive me to appointments and just generally check on me and be an emergency contact for when I fall and can't get up or dislocate something and need help pulling it back in place.
I was supposed to have an appointment with a new neurologist on Monday, but they called and said that they didn't want to see me and that I should go to University Hospital instead. They also faxed us back a copy of my summary sheet highlighting psycosomatic and opana (a narcotic) on it. They apparently didn't read on to see that my knee pain was not psycosomatic but a plica pulling my fat pad into the joint, squishing it to the point where most of my fat pad had to be removed. The nurse claimed that I was too complicated, but the fax we received contradicts that a bit. I hate that they sent that fax because now I am really anxious that I am about to go down that "it's all in your head" path again and that I will loose the allies I have gained and will be stopped from getting my infusions and the methotrexate.
This is horrible timing too because I am supposed to start college in two weeks and as things stand right now I am not sure I am going to make it. The university won't let any employees of the school help me get my joints back, the RA can't even come help me get off of the floor if I fall, all they can do is call 911 which is totally unnecessary for a simple dislocation or subluxation. I can't advertise that I am looking for someone to help me with laundry and call when I am in trouble either. I am going up with no support system in place or even a way to find one. I have no idea what to do! And if I start and have to drop out, that looks bad for when I want to start again because there is no medical withdraw.
Tuesday, April 27, 2010
Infections galore
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.
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.
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.
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.
Wednesday, September 30, 2009
Doctors Galore
Last week I saw a new hip surgeon at porter hospital and an endocrinologist at Swedish. The hip surgeon was okay, he ordered an MRI which was on Monday after school to check for avascular necrosis, which basically means there is no blood flow to the femoral head and it dies which requires a total hip replacement which is definitely something that we don't want happening. The endocrinologist was amazing she was very intelligent and good at explaining thing and excited to help me out and learn about EDS along the way. The first thing she said to me after introducing herself was, "Do you really have Ehlers Danlos Syndrome!?!!". She is concerned about my lack of a period for three months and the lactation slowed hair growth sweating and acne and ordered several blood tests. She suspects either a pituitary tumor, congenital adrenal hyperplasia (a genetic disease which my cousin has), or early menopause among other things.
Monday I saw a new urologist at littleton hospital, he was also fairly knowledgeable and has one other patient with EDS. However he was a little condescending-and 2 hours late- and his PA treated me like a two year old, they want me drinking 2 litres a day and peeing every 2 hours. To check my emptying I was sent to the bathroom and instructed to pee, the instant that I pulled my panties down it ripped of some of the healing skin on my hip that stuck to my undies and started gushing. It soaked through my undies and two gauze pads that the PA put on it-on the plus side that office will never underestimate my healing issues after that demonstration. She scanned my bladder after my unsuccessful attempts and I had over 300cc and no sensation, most people are doing the potty dance at that point where as I usually don't feel anything until about a litre. Because of this I am high risk for infections so I got put on their infection protocal/program.
We ran from that appointment to an emergency appointment with Dr. Sodden my amazing GI at Children's and got a flat tire on 225 along the way (luckily we pulled off into the Aurora medical center parking lot and a few maintenance workers spotted us and had the tire changed in 5 minutes). He took an amazing amount of time with us and decided that for now the blood is nothing major to worry about and that we will just keep an eye on my blood counts to make sure I am not getting anemic. The reason the appointment was an emergency is that I have been having episodes of incontinence at night and a few times when Mom wakes me up for meds, have been confused and clumsy/unable to use my hands correctly. He thinks I might have a teathered cord, a chiari malformation, or some other sort of nerve problem (as does the urologist), or that I might be having seizures.
Today I saw Dr. Ellias the geneticist/specialty care and found out that my biopsy was negative for EDS IV which is a good thing and that she still isn't exactly sure what I have because I don't exactly fit any type of EDS, but that for simplicity's sake we will call it EDS. She agrees that seizures are a definate possibility and will follow up in three months. Tomorrow I see Dr. Wilcox my urologist at children's to see what he has to say. I will be having my cystoscopy at Children's with him even if I choose to go with the other practice because I feel much safer at Children's than anywhere else. Next week I see someone at Children's who can be my primary care for a few more years and specialized on transfering complicated kids out of the pediatric system. I also see Kelly (my counselor of 5 years) and the opthamologist in the next few weeks.
Possible New Diagnosis:
Avascular necrosis
Early menopause
Pituitary tumor
congenital adrenal hyperplasia
Teathered cord
chiari malformation
Unconnected/severed nerves
Epilepsy/seizures
Test:
Cystoscopy(done under general anesthesia)
urodynamics/pressure testing
MRI of spine
MRI of pituitary
MRI of hip (done)
EEG
Monday I saw a new urologist at littleton hospital, he was also fairly knowledgeable and has one other patient with EDS. However he was a little condescending-and 2 hours late- and his PA treated me like a two year old, they want me drinking 2 litres a day and peeing every 2 hours. To check my emptying I was sent to the bathroom and instructed to pee, the instant that I pulled my panties down it ripped of some of the healing skin on my hip that stuck to my undies and started gushing. It soaked through my undies and two gauze pads that the PA put on it-on the plus side that office will never underestimate my healing issues after that demonstration. She scanned my bladder after my unsuccessful attempts and I had over 300cc and no sensation, most people are doing the potty dance at that point where as I usually don't feel anything until about a litre. Because of this I am high risk for infections so I got put on their infection protocal/program.
We ran from that appointment to an emergency appointment with Dr. Sodden my amazing GI at Children's and got a flat tire on 225 along the way (luckily we pulled off into the Aurora medical center parking lot and a few maintenance workers spotted us and had the tire changed in 5 minutes). He took an amazing amount of time with us and decided that for now the blood is nothing major to worry about and that we will just keep an eye on my blood counts to make sure I am not getting anemic. The reason the appointment was an emergency is that I have been having episodes of incontinence at night and a few times when Mom wakes me up for meds, have been confused and clumsy/unable to use my hands correctly. He thinks I might have a teathered cord, a chiari malformation, or some other sort of nerve problem (as does the urologist), or that I might be having seizures.
Today I saw Dr. Ellias the geneticist/specialty care and found out that my biopsy was negative for EDS IV which is a good thing and that she still isn't exactly sure what I have because I don't exactly fit any type of EDS, but that for simplicity's sake we will call it EDS. She agrees that seizures are a definate possibility and will follow up in three months. Tomorrow I see Dr. Wilcox my urologist at children's to see what he has to say. I will be having my cystoscopy at Children's with him even if I choose to go with the other practice because I feel much safer at Children's than anywhere else. Next week I see someone at Children's who can be my primary care for a few more years and specialized on transfering complicated kids out of the pediatric system. I also see Kelly (my counselor of 5 years) and the opthamologist in the next few weeks.
Possible New Diagnosis:
Avascular necrosis
Early menopause
Pituitary tumor
congenital adrenal hyperplasia
Teathered cord
chiari malformation
Unconnected/severed nerves
Epilepsy/seizures
Test:
Cystoscopy(done under general anesthesia)
urodynamics/pressure testing
MRI of spine
MRI of pituitary
MRI of hip (done)
EEG
Tuesday, September 15, 2009
Still No Answers
We finally received the results from my endoscopy, colonoscopy, and capsule endoscopy and the answer is that there really isn't one. They saw a small bubble/pouch in my small intestine, but that doesn't account for the blood or the nausea. The fissure that they saw last time and tried to blame is gone, but for lack of any other ideas he is still blaming it on the non-existent fissure. I have a meckle scan Monday but the radiologist said that it is a shot in the dark and pretty much a useless test because nothing is wrong (she did my bone scans in the past and thinks that everything is in my head even though we have difinative proof that it isn't) so we are off to the endocrinologist in hopes that my hormones are causing my nausea in addition to my missing periods and lactation. I need an MRI of my spine and hip to check for a tethered cord that may be contributing to my problems. We are getting a second oppionion from a hip surgeion that specializes cleaning up after other surgeons, I am also seeing another urologist that has a clue and unfortunately need a cystoscopy which means being put under for the fifth time this year.
Friday, August 14, 2009
Intro
I am a senior with Ehlers Danlos Syndrome (EDS), a genetic disorder which causes the body to produce faulty collagen. Collagen could be described as the glue that holds the body together, because of it my joints are really flexible which causes them to be unstable and to dislocate often. My skin is fragile and I have a really hard time healing and get wide scars from every thing, it also affects some of my hollow organs like my bladder and digestive system. It is not degenerative, but because I don't really heal and my joints are always getting damaged from dislocating, the damage builds up over time so the problems grow the older I get.
The first clues that I have EDS started when I was weeks old. My hips would "pop" when my diper was changed and when I got dressed, as I got older and was able to express myself I would complain of pain in my joints (especially my hips) and the doctors would always say that it was in my head, that I was trying to get attention, or it was just growing pains and if I ignored it or got stronger it would go away. I was unable to hold a pencil correctly, do the monkey bars or pull ups, or throw/hit a ball with enough force in PE. Fearing that I would recieve the same answer as always if I told anyone that it hurt when I did these things and made my shoulders, hands, knees, etc hurt and pop never said anything about it. I avoided the monkey bars but worked doubly hard at home practicing throwing and catching balls and tried every pencil grip on earth to no avail in fact all the practicing just made things worse. So I would stay away from the center of the games in PE and my teacher just assumed that I was afraid of getting hit by the ball(which was sort of true because it hurt) there were many a day that I left PE in tears.
Seventh grade I had agonizing pain in my left knee and had 3 epidurals (one that was left in for a month, one for a week, and one in and out), a sympathetic nerve block, two joint injections, a year of PT and seeing a rehab psycologist before a 45 minute arthroscopic surgery rid me of the pain. Because once again, they decided it was in my head, since they could not find a source for my pain on a MRI and the epidurals never touched my knee (we now know this is because of a septum in my epidural space). Finally on Halloween of 07' I was diagnosed with EDS. It caused the problems with my knee, all of the pain in my joints, and several malformations (pectus excavatum, deformed hip sockets and femoral head/neck). I have had 2 surgeries on my right hip (surgical dislocation to fix a labral tear and smooth the femoral head and neck, one to remove the screws). The last year complications from EDS(including the surgeries) has earned me 21 total days inpatient at Children's hospital as well as almost weekly appointments there, PT, OT, and 5+ ER visits.
I also have had chronic migraines since the age of four. However it wasn't until I was seven that they were actually diagnosed. Once again the doctors believed that it was a ploy to get attention or that I was anxious about school. They later morphed into hemiplegic migraines, which left me with slurred speach, and right sided hemiperisis. Only high doses of prednisone would get rid of them. My freshman year of high school I had a hemiplegic migraine (or so we thought) that was triggered by a heating pack in PT that lasted 18 months it was dubbed a conversion disorder (phycosamatic) and ignored. I was eventually put on a high dose burst of prednisone to clear up a blistered rash on my back and my right arm started to work again, so plaquinil was added to the mix and I regained full use and haven't had another since. It also got rid of my daily fevers (100 +), mouth sores, some skin sores, and heat control isues, and some photosensitivity. I have been tenatively diagnosed with an unknown autoimmune disorder, but will probably eventually classified as lupus as my mom has it too.
I will hopefully graduate May 2010-I am .5 credits short because I have only been able to attend full time one year. I plan to attend CSU and study chemistry and soil conservation.
The first clues that I have EDS started when I was weeks old. My hips would "pop" when my diper was changed and when I got dressed, as I got older and was able to express myself I would complain of pain in my joints (especially my hips) and the doctors would always say that it was in my head, that I was trying to get attention, or it was just growing pains and if I ignored it or got stronger it would go away. I was unable to hold a pencil correctly, do the monkey bars or pull ups, or throw/hit a ball with enough force in PE. Fearing that I would recieve the same answer as always if I told anyone that it hurt when I did these things and made my shoulders, hands, knees, etc hurt and pop never said anything about it. I avoided the monkey bars but worked doubly hard at home practicing throwing and catching balls and tried every pencil grip on earth to no avail in fact all the practicing just made things worse. So I would stay away from the center of the games in PE and my teacher just assumed that I was afraid of getting hit by the ball(which was sort of true because it hurt) there were many a day that I left PE in tears.
Seventh grade I had agonizing pain in my left knee and had 3 epidurals (one that was left in for a month, one for a week, and one in and out), a sympathetic nerve block, two joint injections, a year of PT and seeing a rehab psycologist before a 45 minute arthroscopic surgery rid me of the pain. Because once again, they decided it was in my head, since they could not find a source for my pain on a MRI and the epidurals never touched my knee (we now know this is because of a septum in my epidural space). Finally on Halloween of 07' I was diagnosed with EDS. It caused the problems with my knee, all of the pain in my joints, and several malformations (pectus excavatum, deformed hip sockets and femoral head/neck). I have had 2 surgeries on my right hip (surgical dislocation to fix a labral tear and smooth the femoral head and neck, one to remove the screws). The last year complications from EDS(including the surgeries) has earned me 21 total days inpatient at Children's hospital as well as almost weekly appointments there, PT, OT, and 5+ ER visits.
I also have had chronic migraines since the age of four. However it wasn't until I was seven that they were actually diagnosed. Once again the doctors believed that it was a ploy to get attention or that I was anxious about school. They later morphed into hemiplegic migraines, which left me with slurred speach, and right sided hemiperisis. Only high doses of prednisone would get rid of them. My freshman year of high school I had a hemiplegic migraine (or so we thought) that was triggered by a heating pack in PT that lasted 18 months it was dubbed a conversion disorder (phycosamatic) and ignored. I was eventually put on a high dose burst of prednisone to clear up a blistered rash on my back and my right arm started to work again, so plaquinil was added to the mix and I regained full use and haven't had another since. It also got rid of my daily fevers (100 +), mouth sores, some skin sores, and heat control isues, and some photosensitivity. I have been tenatively diagnosed with an unknown autoimmune disorder, but will probably eventually classified as lupus as my mom has it too.
I will hopefully graduate May 2010-I am .5 credits short because I have only been able to attend full time one year. I plan to attend CSU and study chemistry and soil conservation.
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