The Great Grape Ape: Part One

I have rheumatoid autoimmune disease which is my 1000lb gorilla in my and my family’s life.  I sort of like to think of it as this bright purple ape mocking me, you know like Grape Ape.  And if you know grape ape then you are older, like me.

I was diagnosed about 20 months ago after what I thought was the beginning of a stroke or a heart attack.  While sitting in the gym watching JV basketball with Maddie, my right arm starting tingling and felt numb.  Pain radiated down my arm.  So I left the gym, went home and took an aspirin.  The pain seemed to lesson, so I returned to the basketball games.

I went to Dr. Patel and she diagnosed rheumatic fever and drew a few pints of blood, testing for all kinds of autoimmune diseases and cancers.  The results were mixed so she sent me for an echo cardiogram.  Believe it or not, I have a heart.  And it was just fine.

Two weeks later in Tifton at a Jr Pro basketball game, the same thing happened to my left side.  I decided maybe I should go back to the doctor since the pain was now in both arms and my shoulders, and my elbows and hands felt like they were on fire.

More blood work later, my Rh positive factor was through the roof and Dr. Patel referred me to a Rheumatologist.  I had two options, the doctor in Thomasville with a 6 month waiting list or use a not on my insurance doctor and wait 3 to 4 months.  By the time my appointment rolled around in April, I had been in pain for nearly four months. My ankles and toes were extremely swollen and I had basically lost the movement in my right wrist.  Dr. Patel had prescribed prednisone and Aleve. 

Xrays and blood work, and the RAD doctor confirmed the disease, again.  She started me on methotrexate pills, folic acid, more prednisone and Pepcid.  Those pills are strait from satan. I later found out that methotrexate is used to treat and shrink tumors and is chemo in a pill.  After two months of nausea, my doctor swapped me to injections.  Only one problem, my right wrist still won’t bend.  So my mom gives me my shots…when I take them.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001467/

My RAD responded to the treatment, but I still had to take my “chemo” cocktail before “shooting up” on Saturday night…one zophran, two Pepcid, two folic acid and two ibuprofen.  And then I would attempt to sleep through the nausea.  In addition to the worse than being pregnant nausea, I had female related side effects.  Read your drug labels folks.  You’ll be amazed at the side effects of some drugs.

The RAD took several months of my life.  I was so tired and in so much pain that I don’t really remember much other than working and going to bed.  I spent hours wrapped up in heating pads.  Maddie even helped me dress most mornings and AnnaBelle would brush my hair.  I guess I have gotten use to the pain.   I still hurt, but just grit my teeth and go on.

I still get angry at times about my diagnosis…mostly at myself.  I should have taken better care of myself…even if that meant some very drastic decisions.  I use to hope for remission.  Now I realize that remission is total BS.  There are times of flares and extreme pain and at best just times of pain.  There is no remission.

So what to do? I hope the next 12 to 24  months will be a time of adapting to this disease.  I want to get the most out of the "good" years of mobility that I have left and spend as much time doing fun stuff with Scott and the girls.  I will address more about my future with RAD in part two.