Sunday, August 28, 2011

How do you make it every day with an autoimmune disease?

I have been battling an autoimmune condition related to Ankylosing Spondylitis, called SAPHO Syndrome, for over a year.  I have been on a DMARD (Disease Modifying Anti-Rheumatic Drugs), Sulfasalazine, since May.  DMARD's take a while to work, as in 4 to 6 months to know if they are truly going to help.

At the 6 to 8 week window, I started having more energy, but it did not decrease my daily pain.

I found some helpful information at, but the Experience Project was a bust.  They have some interesting posts, but interacting has been impossible to get involved in.

It's a daily thing.  I find it hard to plan too much in advance because I don't know what my pain will be like.

On top of that, I am a wife, a stepmom, full time student and an aquarist.  It is hard to get everything done without overdoing it and knocking yourself down for several days.

This week I have had a lot of trouble walking.  My doctor gave me a script for a handicap placard for times like this, it is embarrassing to use, but it helps.

Please know that you are not alone in your battle to be everything you were before autoimmune disease knocked you down.  There is strength in numbers and we can support each other!!!

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