Count me in with those of you trying to come to grips with losing what your life should have been.
My main issue is Adult Onset Stills Disease, a very rare autoimmune disorder that is best described as a marriage of Lupus and Rheumatoid Arthritis. It has the fever, rash and organ destruction of Lupus and the pain and joint destruction of RA.
Because of the AOSD, I have developed Pluerisy, Fibromyalgia, Acid Reflux and an ulcer.
I also have a rare blood disorder called VonWillebrauns Disease - which is like a hemophilia that affects people of Irish or Scottish decent, and is one of the few hemophilias that women can actually suffer from and not just be a carrier. Because of this I cannot take any medicine that can be considered a blood thinner, like aspirin or ibuprophen. You can see this make treating my chronic pain pretty tricky.
I live on the maximum dose of Vicodin a day, I also have to take amphetamines and other drugs just to maintain a lifestyle that I consider to be a living hell at times.
A lot of people with AOSD have flares for about a year and then it goes into remission. Mine flared in 2000 and never stopped. According to the doctor, it probably won't stop. It will probably be responsible for whatever kills me in the long run (with the organ destruction). I belong to a support group for my disease and the roughest thing is having people your own age when you consider yourself still somewhat young, dying suddenly from this stupid disease.
There are no studies going on for a cure. There never will. It's too rare for a drug company to blow that kind of money. It effects only .000006% of the population. Why the heck couldn't I have just won the lottery instead.
I've always suffered from depression, but because of my chronic illness, it has gotten severe. The doctors keep me on a close watch because of the amount of stress I'm going through. Some of them say they don't understand how I get up and go to work in the morning. I guess it's the redhead in me.
Right now I am going through a "why me" phase. Why did this happen to me. Right before I had gotten sick, I had built up my self esteem that was broken down by an abusive husband that tried to put me through a wall. I took up kickboxing and quickly started advancing through the belt levels(gotta love long legs..lol), dated a bunch of guys, met, fell in love with and married Matthew in a 9 months span and then 6 months later - bam. My "life" I worked so hard to get back was taken away again, but this time by a disease instead of by a controlling person.
I think I cry daily. My car ride to work is normally my chance to cry. I know you might be thinking that I am just feeling sorry for myself, but I have to get it out. I'm in severe pain every living breathing moment. I
miss the old Lauri... the one that liked to kickbox, ride roller coasters, play laser tag like I was Rambo
,draw, paint, run.. have fun. Now I'm just a shell of a person that goes to work every day to make enough money to pay for my 28 daily pills, then I come home, take a bit of time at the computer, go to bed and start it all over from step one.
I can't help but feel bad for what I've done to our marriage and how ripped off Matthew must feel, getting stuck with what I've become.
I don't think I'll ever come to grips with my reality.