- CASE FILE
From Head to Toes, I don't know! My joints, bones, spine, soft & connective tissue & nerves- rapidly going away! PAIN, SURGERIES, WHAT ELSE?
ABOUT THIS CASE FILE
At 13- chronic patellar dislocation with ligament & tendon injury. At 14 ortho said had knees of 80 yr old. No surgwon would replace at 14, so for 11 years had 20+ procedures /surgeries. When had TKR was 4 weeks ahead of my physical therapy plan. 10 weeks after and less than a 2 week period my new knee tripled in size, films stated abnormal scar or tissue growth. Received radiation dosing before the revision. Post op Dr stated he never seen scar tissue as such, was NOT a cancer. Back in 2000-ish was simply told abnormal tissue that was aggressive in growth. I have had 7 huge adhesions removed abdominal. EVERY, and I mean EVERY surgery has in post op been said "wow much worse than films or we thought," or " your bones, joint, back worse than my geriatric patients." The entire time I have always felt I don't have the proper diagnoses. So for over 30 years fires are simmered, BUT not one doctor has wanted to advocate to find the cause(s). Whatever this skeletal, muscular, nuerological debilitation is, I don't know. BUT here is what I do know- No matter how much I refuse to allow "it" to define me, truth is "it" has a huge hold of me. The past 5-7 years as much as I hate to state, "it" has gotten 70% worse. Many days now I need help with the simplest of self care. Often I need the walker for balance, stability and pain reduction. "IT," is progressing and very aggressively. I am a lover, love to love, believe kindness is always best. If I can't do simple daily care, then I can't give my love to my family & "framily." Writing this is heartwrenching because I'm giving "IT" the incredible debilitating effect it has! I am on medicines that at best I feel put bandaids on massive wounds. So the ride is something like this-- I wake and am bed/couch bound. I want to fight it, but past 3 years have learned, I must listen to my body. So as I surrender to "IT," I rest. But all my symptoms have worrsened in intensity & frequency. Also now the "essential tremors" have made me drink with a covered cup. My balance is off, the chronic pain and new areas scream in pain. My family who I love to love on rarely get my fantastic cooking or baking. Framily can no longer swing by for my soul & cold healing chicken soup, because there is no longer the frozen supply stocked in freezer. I know there are many others worse off. I refuse pity and just recently past 2 years have to ask for the help. Then my mind & body wonder a few things, what is my actual or primary diagnosis? Will I ever be treated properly instead of improperly as my body yelps that I am. Just this year alone in January and again in March I had both my hips replaced. So when I state whatever "IT" is, is aggressive, I am NOT exaggerating at all. I am only 51, have had 4 total replacements, have orthopedic devices in ankle, both knees, both hips, both shoulders, Thoracic & Lumbar spine. Still require another replacement of my shoulders, cervical surgery that I never want!! The nervedamage, my muscle and tendon deterioration I can feel! I have complete tears, partial tears etc. All of them non repairable due to thickening. My femoral nerve in r & l leg severely injured during my total hips. Uggh I dislike speaking about myself. I had to set up this because by grace & this self advocacy just maybe "IT" will have a name and all my fires will be stopped because I am blessed to get direction, advice and accurate care & treatment. I love to love BUT most of all I want to have the quality to LIVE so I can love. Thankyou everyone- may peace, joy & managed health be abundant.