12th December 2005
I posted this in another thread, but figured I should here too. This is the 'long' version - the 'condensed' one is in the "100% Compliance. PERIOD" thread".
I'm 27. I was born with a bone and joint disease that was always labeled either Arthrogryposis Multriplex Congenita (AMC) or Multiple Epiphyseal Displasia (MED), causing joint contractures, weak and thin bones, vertical talipes, Pectus Carinatum, and several other assorted problems, mostly affecting my skeleton and joints. I'm affected in every bone and joint too - knees (don't bend or straighten all the way), hips (limited movement), ankles (limited movement), wrists (curve inward), neck (abnormal structure), my entire back (abnormal structure), my teeth (short roots), shoulders (they radiate inwards), elbows (don't bend or straighten all the way), fingers (contractures) and, toes (contractures - hammer toes). My doctors and I still don't know the specific names or causes of many of the problems. Other problems are very severe asthma due to my relatively small lungs and an enlarged heart - continuously shows up on my yearly echocardiograms. I have scoliosis with a compensatory curve above the worst area in my low back. Recently I was diagnosed with osteoperosis and some non joint related problems such as Irritable Bowel Syndrome and lactose intolerance. I have a lot of sinus and allergy issues too. My orthopaedic doctor thinks that "the strain of walking" is making my feet worse. I've already developed a piece of necrotic bone in my left ankle and he fears it will only get worse. He's pushing for an ankle fusion, but I'm sure that will screw the rest of me up more than I am now. Lastly, in 1995 I had a rather severe Asthma attack and I contracted RSV (right?) This left me on Dexthamesasone (Decadron), a corticosteroid, for over 1 year, leaving me with GERD and helping to weaken my bones. Lastly I have sleeping problems. I've had them since birth too and I tend to toss and turn thru most of the night.
I've had almost two dozen surgeries to correct problems. These range from having the contractures in almost every one of my fingers and toes surgically straightened, except for one toe on each foot and one finger on my left hand. I have had my septum straightened to stop my sinus drainage from blocking behind it and causing severe headaches. The surgery was succesful, but as a result, I have excessive drainage from my nose and down the back of my throat. I had my wisdom teeth out at 17, but it took very long to heal and my back teeth shifted further back. When I was 13, I had the upper canines in my mouth removed because they were impacted. This caused a lot of my teeth to migrate, but braces were out of the question due to my short roots - my dentist was afraid that they might get pulled out by the braces. When I was somewhere between birth and a year old, I had some sort of a hernia (I can't remember the name) because I don't think my testicles had decended. In 2003, I had a Cervical Fusion to break and re-fuse C5 and C6 in a more natural position. Unfortunately, my vertebrae are somewhat already fused and my back has a reverse curve up until my C-Spine. At my neck, the curve disapears and it is straight. My head also sits on my neck the wrong way, so it appears I have a short neck.
I take a lot of medication; some for pain and most for other problems. This includes 90mg of Morphine (Avinza) daily with Percocet for Breakthrough pain. Asthma meds are Serevent (I'm planning to get off this), Asthmacourt (I think I don't need this anymore) and Advair (this works!), plus Singular but I don't think it works as well as Accolate did and my insurance Co won't cover Accolate. For GERD I take Nexium and I take an occasional Lunesta for sleeping problems. Colchicine is for possible Gout (If I'm having a flare-up in my feet or elbows), Rhinocort for allergies/sinus troubles, and Antivert for the nasuea my neck pain causes. I was on Bextra and there's a few anti-inflammatories we're (my doctors and I) looking into, but I'm not one one currently. I also Fosomax, but the side effects absolutely screw me up, so I've been deviating from 1 a week to 1 a month almost. I was on Actonel and it caused more problems than it was worth, so we're being very cautious with osteoperosis meds.
That's most of it. I've left out hospital visits for Asthma attacks, but that's usually one lengthly visit (2 weeks) every 9 years so far.
My pain is under control for the most part. I still have to be very careful because almost anything can make me hurt and even though it is under control, I can still move in a way that can cuase instant and long lasting pain I wasn't expecting.
I'm 27. I was born with a bone and joint disease that was always labeled either Arthrogryposis Multriplex Congenita (AMC) or Multiple Epiphyseal Displasia (MED), causing joint contractures, weak and thin bones, vertical talipes, Pectus Carinatum, and several other assorted problems, mostly affecting my skeleton and joints. I'm affected in every bone and joint too - knees (don't bend or straighten all the way), hips (limited movement), ankles (limited movement), wrists (curve inward), neck (abnormal structure), my entire back (abnormal structure), my teeth (short roots), shoulders (they radiate inwards), elbows (don't bend or straighten all the way), fingers (contractures) and, toes (contractures - hammer toes). My doctors and I still don't know the specific names or causes of many of the problems. Other problems are very severe asthma due to my relatively small lungs and an enlarged heart - continuously shows up on my yearly echocardiograms. I have scoliosis with a compensatory curve above the worst area in my low back. Recently I was diagnosed with osteoperosis and some non joint related problems such as Irritable Bowel Syndrome and lactose intolerance. I have a lot of sinus and allergy issues too. My orthopaedic doctor thinks that "the strain of walking" is making my feet worse. I've already developed a piece of necrotic bone in my left ankle and he fears it will only get worse. He's pushing for an ankle fusion, but I'm sure that will screw the rest of me up more than I am now. Lastly, in 1995 I had a rather severe Asthma attack and I contracted RSV (right?) This left me on Dexthamesasone (Decadron), a corticosteroid, for over 1 year, leaving me with GERD and helping to weaken my bones. Lastly I have sleeping problems. I've had them since birth too and I tend to toss and turn thru most of the night.
I've had almost two dozen surgeries to correct problems. These range from having the contractures in almost every one of my fingers and toes surgically straightened, except for one toe on each foot and one finger on my left hand. I have had my septum straightened to stop my sinus drainage from blocking behind it and causing severe headaches. The surgery was succesful, but as a result, I have excessive drainage from my nose and down the back of my throat. I had my wisdom teeth out at 17, but it took very long to heal and my back teeth shifted further back. When I was 13, I had the upper canines in my mouth removed because they were impacted. This caused a lot of my teeth to migrate, but braces were out of the question due to my short roots - my dentist was afraid that they might get pulled out by the braces. When I was somewhere between birth and a year old, I had some sort of a hernia (I can't remember the name) because I don't think my testicles had decended. In 2003, I had a Cervical Fusion to break and re-fuse C5 and C6 in a more natural position. Unfortunately, my vertebrae are somewhat already fused and my back has a reverse curve up until my C-Spine. At my neck, the curve disapears and it is straight. My head also sits on my neck the wrong way, so it appears I have a short neck.
I take a lot of medication; some for pain and most for other problems. This includes 90mg of Morphine (Avinza) daily with Percocet for Breakthrough pain. Asthma meds are Serevent (I'm planning to get off this), Asthmacourt (I think I don't need this anymore) and Advair (this works!), plus Singular but I don't think it works as well as Accolate did and my insurance Co won't cover Accolate. For GERD I take Nexium and I take an occasional Lunesta for sleeping problems. Colchicine is for possible Gout (If I'm having a flare-up in my feet or elbows), Rhinocort for allergies/sinus troubles, and Antivert for the nasuea my neck pain causes. I was on Bextra and there's a few anti-inflammatories we're (my doctors and I) looking into, but I'm not one one currently. I also Fosomax, but the side effects absolutely screw me up, so I've been deviating from 1 a week to 1 a month almost. I was on Actonel and it caused more problems than it was worth, so we're being very cautious with osteoperosis meds.
That's most of it. I've left out hospital visits for Asthma attacks, but that's usually one lengthly visit (2 weeks) every 9 years so far.
My pain is under control for the most part. I still have to be very careful because almost anything can make me hurt and even though it is under control, I can still move in a way that can cuase instant and long lasting pain I wasn't expecting.