Chelsea

 

 

I was diagnosed with Stills disease in June of 1999.  I had known for two weeks that they suspected it but it really hit me when my rheumy came in and declared it.  I'd been having problems but for a while they really couldn't figure me out so they just treated my symptoms.  I was prescribed Lodine, Azulfidine and Plaquinel.  They don't want to start putting me on prednisone since I'm so young (22).  I was only having joint inflammation problems.  

Once the Azulfidine kicked in I started getting the prickling/tingling sensation in my hands and feet really bad.  Then I got the rash from head to toe and itching like crazy!  Then I got a flare with the fevers and chills. I called my rheumy to tell her and since I had a rash she wanted to see me right away, they've been so great.  Everybody came in to look at the rash. My rheumy took one look at it and said I had Stills.  He told me that the British have found that prescribing azulfidine to patients with RA and Stills distinguishes the two.  The patients that have Stills have a bad reaction to the azulfidine and they get a rash.  I though that I should notify everyone
about it because I wouldn't wish this rash on anyone.  

They put me on prednisone again but just tapered doses for a week. I have found some things that have helped with the rash... LANACANE spray does wonders. It has a numbing ingredient which I believe is the BENZOCAINE.  

I tried the benadryl cream, spray, and tablets, they didn't seem to do anything for the itching. My rhumatologist told me that I've had this for at least 5 years.  In 1995, I was told I had hepatitis, but the DR's couldn't figure out what caused it, I didn't have A, B, or C.  I had a rash from head to toe but the doctors just dismissed it.  When
I complained about the pain and joint stiffness it was dismissed as a result of being in bed for weeks.  I was told that I had gotten a virus along the way that progressed into infecting my liver, but no virus was ever found.


I did have the same rash that I do now, but my dr. just wrote it off as something else.  I am now told that it was my first flare.  From then on every time I got sick and got a rash my doctor would just put me on prednisone since it was the only thing that would
make me feel better, just suppressing my symptoms.  

When I had my second flare in Sept '98, I started suspecting that what I had and the hepatitis were related.  My second flare lasted about 5 months and the doctors started suspecting that it was an autoimmune disease, probably Lupus.I was also diagnosed last year with Hashimoto's thyroiditis which means that my thyroid is under active (hypothyroidism).  My rhumey told me that it is very common for people with autoimmune diseases to have more than one, which
I guess my thyroid turned out to be.
Being diagnosed at least gives me some closure.  I've found myself afraid to plan or commit to things that I normally would just jump at.  

Then I have to remind myself that I've had some pretty good years and have still had this.  I'm kinda glad that I didn't get diagnosed with my first flare, I really think that would have prevented me from doing some of the things I did in college. I do have to consider myself lucky too.  This year has just been particularly hard, but I am confident
things will get better and life will go on. I've been lying in bed thinking the past few days on what my life is going to be like now.  I ask myself if this changes all of my plans, or just delays them a little bit.  Then I think about how stronger a person I am for enduring this.
I have learned so much about myself and would not trade my days in the hospital for anything in the world.  It made me
focused and made me put my priorities in order and I think that I am truly a better person for it.

So many people go through life just taking their health and time for advantage.  I joke with my friends that I think everyone should get really sick just once for the learning experience because it really does teach you a lot.  Not that I really enjoy being sick or
anything, I just think that it gives you a better appreciation for life and all the simple things.  I think that God does everything for a purpose and I'm just trying to make sense of it all.  I keep tell myself that God
must have a special plan for me to do all this, so I better pay attention and start learning
something!

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