Ahoy Fellow Fathomers, I’ve decided to use my blog not only to writing, music, and other facets of entertainment, but, also to share my journey. I found out on June 19, 2013 the reason for many of my ongoing health problems is because I have systemic lupus, also known as SLE.
BRAKE HERE- I visited the University of Colorado, Denver November 13, 2013 for a second opinion. The incredible Dr. Susan Boackle University of Colorado Rheumatology agreed to see me as a new patient. She evaluated all my medical records to date and worked me into her schedule. She took a 2 hour comprehensive history with me, ordered urine tests, x-rays, and also blood tests. The phlebotomist drew 19 vials of blood for all the tests. I had juice and cookies before they let me stand up, they took almost as much blood as a donation for blood drive.
I waited almost impatiently for the week to be up and my results. I wanted to know if the medication I was taking was appropriate for what was going on with me- I mean, surely someone can find something better for me and help me feel more like my “old” self.
Dr. Boackle called me on a Wednesday night, just as I was checking out at Toys R Us. I remember because the call was just that important. She greeted me and jumped right in, “I have good news and bad news…”
“All your tests are in, including the labs and your blood work is pristine.”
Did she really say pristine? As in, no lupus?
She pulled a telepathy jedi mind trick. “I really don’t think you have lupus.”
“I believe something is going on with you, but, I really don’t believe it’s lupus. I just don’t know what it is.”
My mind keeps racing - But, wait, my ANA tests were elevated, what about all my symptoms, what is wrong with me?
She finished the conversation very politely and said she would report her findings to my doctor. She did suggest I stop taking the Plaquenil right away. I had been on double the amount needed for my body weight anyway, so, she suspected medication toxicity could be occurring.
So, now, I’m back to square one, feeling not any better than I have in two years and apparently, no closer to an answer. I will follow up with my neurologist and rheumatologist for rounds three and four. HOWEVER, thankfully, my organ systems are working well and it is a huge sigh of relief that it may not be lupus causing my problems. But, something is attacking my immune system, central nervous system, and creating fatigue, muscle aches/pains, headache, stiffness, sores on my scalp, peripheral neuropathy, and an unreasonable morphine itch when I come in contact with water.
Give me strength.
Thank you for listening, each week I will have a new installment chronicling my journey. Please, please feel free to comment, write, share. I hope to use this forum as a help to all of us, no matter what pain you are experiencing. You may also send stories to me via finlessbook at gmail dot com. I will respect your privacy and maintain your anonymity, if you so desire.
Hugs for today …