Professional Patient

I have an upcoming visit at the Cleveland Clinic, again. Its on Wednesday and, frankly, Wednesday can't get here soon enough. I have been pain free from the headaches for 3 1/2 days and I'm terrified that they could start again at any time. Rain and thunderstorms are in the forecast for the weekend and that is a huge trigger.

I've been busying myself contacting doctor's offices, hospitals (can you believe 3 in the last 4 months!) and even my optometrist, so that I can gather every possible shred of medical data the Neurologist that will examine me (understand poke and prod me some more) could possibly need or want, so she can make the most thorough assessment and informed recommendations possible.

Of course, first I peeked through the data myself, after all, at this level of "professional patient" I am fluent with the lingo and what I should be looking for: potassium, magnesium, vitamin D, B, B12, BUN, creatine, red blood cells, white blood cells, platelets, hematocrit, progesterone, sed rate, ANA, RF, C-reactive protein and what the "normal levels" for each of these are. Some of what I discovered was that a few months back (November) my progesterone level indicated that I was at post-menopausal stage. This poses a risk because the cysts on my ovaries and cervix continued growing resulting in severe pain. There is also a history of cancer in my family and unchecked the cysts could turn cancerous. I also noted the positive Rheumatoid Factor test. This is related to autoimmune diseases such as Sjogren's Syndrome, Systemic Lupus Erythematosus and Rheumatoid Arthritis. Accompanied by my often elevated sedimentation rate,which indicates inflammation in the body, (translation = something hurts) well then an autoimmune disease was indicated (and a lot of somethings were hurting!) But my ANA (Google it because its a long complex name) is always negative so Lupus can't (technically) be diagnosed; but I don't have nodules in the fingers that are a sign of Rheumatoid Arthritis either.

At this point you might be asking (as I often am)WHAT THE HECK IS IT THEN???? Right now it is called Undifferentiated Connective Tissue Disease. Right now you might be asking, WHAT THE HECK DOES THAT MEAN????? I don't know either, but apparently it is meant to indicate there is some issue with the connective tissue such as the muscles and ligaments, that connects us internally. NOTE: If you go to a hospital or Urgent Care they will NOT know what you are talking about. It is best to simplify it by saying "Its an undifferentiated autoimmune disease. I have a positive rheumatoid factor, but no nodules, and Lupus symptoms but a negative ANA" somehow they understand that better than "Undifferentiated Connective Tissue Disease". So why did they give it that freaking name in the first place if they are as confused as we are? Why not name it undifferentiated autoimmune disease and just be clear about the fact that they have no clue as to what the heck it is?

*I will provide a positive note. Since I started seeing my new Rheumy (lingo for Rheumatologist in our inner circles) he started me on Methotrexate and has slowly been adjusting the dosage with some gains thus far in that my hands and knees are hurting less. The proof is that I am able to go up and down stairs easier and I have been able to hold onto books and magazines longer, although I can't read a whole magazine in one sitting, much less a book. Small gains, but improvements none-the-less.