So basically my body hates me (medical rant)
No, I dont hate my body, my body hates me, or at least is attacking me as though it has something against me.
Three weeks ago I went to the hospital because I was afraid my body was failing me. I had no strength in my hips or quads and couldnt move my legs or drive, I couldnt raise my arms to put a tshirt on, and swallowing was difficult. The weakness came upon me over the course of a few weeks and was afraid that I wouldnt make it much longer. You really move your ass when you cant swallow and you enter that tidbit into the Webmd symptom guide (ALS, MS, DEATH!!!)
Two weeks ago the initial diagnosis of Lupus was made.
Last week, the biopsy results said I've a muscle disease that leads to wasting.
The lupus is affecting my kidneys and liver (no beer for me at this time or foreseeable future). It's Stage 1 so it should be controllable with steroids (yippie) and anti-malarial medication.
I've also got something called dermatomyositis where my peripheral (arms and legs) muscles start to crap out on me and deteriorate and swallowing can become difficult. After a week in the hospital and a shitload of tests from head to toe, I've been told I'll never work again. They were like, "congrats, you're permanently diabled and should have no problem getting medicaid, social security...and a crippled parking decal". (Ok, I added the last part).
I'm not ready to be done, to be retired at 36 after not really doing much with my professional life. I dont want to be stuck in the recliner from now on with nothing to do but go crazy cause I cant leave the house.
When the drugs kick in good it should knock the disease into remission somewhat and I'm getting back some strength, but I just cant come to grips with the fact that I'm now in the same boat my father was when he was 36. He's still alive, but has been disabled by lupus for nearly 30 years as well.
Good News: I could qualify for and benefit from medical marijuana
Bad News: I live in Florida (not a MM state)
Good News: I've a hippie burnout neighbor who's into horticulture
Big Picture. I'm doing ok. I've got some strength back and can do for myself more and more each day. My wife works from home as well so I'm well taken care of. My little girl turned 1 this past weekend and hopefully I'll be around to walk her down the aisle in 25-30 years-thats the plan.
Sorry to dump on yall, but I havent told anyone else outside of very close family and needed to vent. I hope it's ok.
= new reply since forum marked as read
I do have a friend whose wife was diagnosed with lupus about 4 years ago (she was 25 at the time). She is doing well, and even has been able to work part time.
Sending healing, comforting vibes to you and your family.
I've been living with chronic pain for 15 years. During that time I've had cancer, a heart attack and a stroke. Unfortunately, I don't have insurance and make "too much" to qualify for Medicaid. I'm not whining, just letting you know I understand. I'm glad that there are people out there that can get the help they need. There will always be people worse off, and much younger, than me that need help more. With a 1 year old girl, you're definitely one of the ones I'm fighting for. 
Do what you can to eliminate as much stress as possible. My ex's sister had lupus and stress would aggravate it.
