MeanLaureen
<font color=purple>Slam Dancer Extraordinaire<br><
- Joined
- Apr 29, 2001
- Messages
- 6,718
Things will be a lot different for me when I go to WDW for the pin event and I know I will be facing a lot of questions from people who haven't seen me in a while. I figured I would fill you guys in now (to save me from sounding like a broken record..lol)
When you see me in September I will be walking with a cane or possibly be in a wheelchair. Some of you know that I have been battling a rare disease for over 2 yrs now. It's called Adult Onset Stills Disease. It's very rare and only affects .000006% of the population. It normally targets people in their late 20's, early 30's and is an equal opportunity illness and doesn't favor men or women. For some people AOSD flares up and then after about 6 months of therapy of one kind or another, it goes into remission. Some people are unfortunate enough to have the long term chronic version that doesn't respond to treatment and does a lot of destruction. I'm one of those people.
AOSD is an autoimmune disease in the family of Rhuematoid Arthritis and Lupus. It is not known how people get this disease and not much is known about it because of the lack of research done. Basically what happens is your immune system gets out of whack and thinks that your joints are infections and attacks them. It can get to the point where it will destroy your joints. It also affects the lining of your heart, your lungs, your liver and your spleen. A couple of times a day my temperature will rise quickly to about 102 degrees or higher and then an hour or so later it will drop as fast as it came. Stills is not fatal to everyone, but it can kill people. We just lost a member of our support group last week to it.
As a side effect to AOSD I have developed Fibromyalgia and due to pain from the AOSD and the Fibro, I have only had 2 nights of sleep in a year when I actually hit 4th stage and didn't wake up between 7-25 times that night. So needless to say, I'm tired.
I've tried all types of treatment options - prednisone and chemotherapy are the drugs I'm on now and seems like the side effects do as much damage as the illness. My best option is Remicade treatments but because of the high cost (thousands of dollars not covered by insurance) it's not an option right now.
So, I just wanted to let you guys know now what is going on with me now so I won't have to give Matt a headache from saying the same things over and over again
oh, and the first person that says anything about my hair looking a lot thinner will get popped with my cane
When you see me in September I will be walking with a cane or possibly be in a wheelchair. Some of you know that I have been battling a rare disease for over 2 yrs now. It's called Adult Onset Stills Disease. It's very rare and only affects .000006% of the population. It normally targets people in their late 20's, early 30's and is an equal opportunity illness and doesn't favor men or women. For some people AOSD flares up and then after about 6 months of therapy of one kind or another, it goes into remission. Some people are unfortunate enough to have the long term chronic version that doesn't respond to treatment and does a lot of destruction. I'm one of those people.
AOSD is an autoimmune disease in the family of Rhuematoid Arthritis and Lupus. It is not known how people get this disease and not much is known about it because of the lack of research done. Basically what happens is your immune system gets out of whack and thinks that your joints are infections and attacks them. It can get to the point where it will destroy your joints. It also affects the lining of your heart, your lungs, your liver and your spleen. A couple of times a day my temperature will rise quickly to about 102 degrees or higher and then an hour or so later it will drop as fast as it came. Stills is not fatal to everyone, but it can kill people. We just lost a member of our support group last week to it.
As a side effect to AOSD I have developed Fibromyalgia and due to pain from the AOSD and the Fibro, I have only had 2 nights of sleep in a year when I actually hit 4th stage and didn't wake up between 7-25 times that night. So needless to say, I'm tired.I've tried all types of treatment options - prednisone and chemotherapy are the drugs I'm on now and seems like the side effects do as much damage as the illness. My best option is Remicade treatments but because of the high cost (thousands of dollars not covered by insurance) it's not an option right now.
So, I just wanted to let you guys know now what is going on with me now so I won't have to give Matt a headache from saying the same things over and over again
oh, and the first person that says anything about my hair looking a lot thinner will get popped with my cane
) I cannot imagine having an illness that causes pain 24/7, nor what you must be going through. For you to keep the sense of humor and fun that we see on these boards everyday, to me, is amazing. I hope one day you will be lucky enough to benefit from all the research now going on in the scientific and medical community.
