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I have CRPS. I am currently entering stage three of this progressive disease, an illness i suffered as a result of misdiagnosis and refusal of medical assistance while in the military. The ailment began in 2009 as a result of a displaced fracture that went untreated because as I was told: "I am lying to try to get out of my soldier duties because I'm a female"
After being forced to perform my military tasks on a broken tibia for 1 1/2 years, I finally suffered one last set of fractures that stopped me in my tracks completely. By that time I had had multiple fractures, un-healing fractures, displaced snaps, calcium deposits and stress related fractures all the the same location. My lower left tibia was a fragile mess, held together by god knows what kind of miracle. I was discharged on a measly 10% after a horrid set of experiences with terrible leadership, and thank goodness the VA raised me to 70 for my other ailments. For a very long time I had no idea what was going on. I had so many different people telling me different things:
I'm ok, I'm not ok, my leg needs surgery, I dont need surgery, I need a rod implanted, I need to cut the bone, I need a wheelchair, i need a walking cast etc etc etc. Nothing worked. I've done everything from progression walk to run therapy to water aerobics, bone stimulation to "mind of matter" meditation......
and i am now unable to walk unassisted, in consistent pain, i cannot sleep, i cannot sit comfortably. I want to play with my stepson and walk with my husband. ( we got married yesterday I almost had to sit for my own marriage, lucky the commissioner was kind enough to give us the "speedy" version of wedlock to save me from too much pain) I want to be able to pick my stepson up when he needs my embrace, but i cannot. My everyday is spent carefully calculating every move i make to ensure the least amount of pain as possible, when i watch tv, or have coffee, or make myself breakfast, even getting out of bed requires some sort of painful caution, as if I'm going to break like an antique vase if the blankets hit me wrong.
After having a name put to the pain a few weeks ago (Reflex Sympathetic Dystrophy AKA Chronic Regional Pain Syndrome "CRPS") I began to research and speak with people who have the same ailments. All answers for my own situation point to a below the knee Trans tibial amputation to stop the progression of this disease. It is already starting to spread, everyone i know who was in the early stages of this disease when diagnosed (I am beginning the latest stage, stage 3) were given a great prognosis. They were told they'd be healed in no time, that with intense therapy they would walk again, they would run again, they could be happy again, they could wear shoes and stand and dance and be normal again. The same thing I was told...But my stage is irreversible...theirs "wasn't.".... now ALL of them have gone through painful procedures with no remission, and one has had chronic pain for 30 years now, another lost her precious mobility due to the limb becoming necrotic and having to be forcefully amputated to safe her life. I DON'T underestimate the severity of losing a limb, I am saddened by the thought of how all of this could have been prevented if my PA in the Army had shut his biased thoughts out and did his job, instead of assuming that I was just "being a girl" and I was just "crazy" or a "liar". If someone had actually helped me...I wouldn't be here, suffering with a decision to remove my own leg in order to live even closer to a life I once had.
I am 21. I'm too young to feel this old, and I've had one hell of a life so far. I'm not going to (pardon the pun) stand for this any longer. I don't want to be disabled for the rest of my life, having doctor after doctor just smile and tell me that if i try hard enough ill be OK, when they have no idea what I am feeling. I don't want to be in a wheelchair, or a hospital bed, with a tube in my spine, hearing the same prognosis "you'll be fine, just keep trying" I've heard that for a long time now, and I see it repeating in the future for years to come.
For me, it is the right choice. I can potentially walk again, I can work again, I can stand on my own again. I can hold my son and I will no longer have to calculate how to stand or how to put on a pair of pants without feeling like my legs are being crushed in a vice and then lit aflame!!
My question is: How do I request this procedure without being turned down? How do I make my doctors see that this is what I need? How can I get my life back?