Saturday, September 6, 2008
"Show My Grin To Who"?
I was told I had mumps. I was told I had saliva sludge built up and told to suck lemon candy while massaging my chipmunk cheeks. Vicodin was given for pain....yes I was Chip and Dale's 2nd cousin twice removed. It went away and came back again and again. I became pregnant 4 years ago with my first child. I was extremely fatigued, my eyes and mouth became more dry than normal, I ached from head to toe, and I blamed it on the 60+ hours of work while pregnant. I ended up with a c-section and placed back into the hospital because a high temperature spike that wouldn't go away. My OB-GYN ran all the tests he could think of because they didn't know what was wrong with me. Finally, I was referred to a nephrologist and rhuematologist. I was told I had an autoimmune disease called Sjogren's Syndrome.
"SHOW WHAT?" I asked. I had them spell it out on a piece of paper for me. I was basically told that it was dry eyes, dry mouth, joint pain, and fatigue. It wasn't life threatening and most people live ordinary lives with medicine.
OK...no problem I thought. I researched it on the Internet and it confirmed what my Doctors said. A few months later because of my slightly waivering kidney function I was told that I had Lupus too. Now that was a familiar term and I didn't like being diagnosed with that. My kidney function was slowly going down and we decided in Jan. 2007 to do a kidney biopsy to see what was going on. The good news was that it wasn't Lupus, but it did show major scarring and renal tubular acidosis that concurs with Primary Sjogren's Syndrome. After a bit more testing...OK A LOT MORE TESTING...it was confirmed that I do not have Lupus or any other autoimmune disease but Sjogren's Syndrome. (I went to 3 different rhuematologists to get opinions).
And now I sit here in front of you getting ready for a kidney transplant in the near future.....because of complications of Sjogrens.
I have started this post about 15 times and I just can't seem to think of anything good to write about. I tried to make it funny...but right now I don't feel like taking the humorous side to having an autoimmune disease. Is there a humorous side?
I guess the best advice I can give is get to know your own body signals...LISTEN to your gut instinct. Question your Doctors and whatever you do....don't let them think that Sjogrens is just an disease with annoying complications...IT IS SO MUCH MORE. Push for research. Find a support group.
SHOW YOUR GRIN!