Wednesday, July 29, 2015



Pins and Needles

    Today was not a stellar day in dealing with my disease. I had to go to my neurologist to get help for a major headache. And I am home now feeling the effects of that visit and that treatment. It’s not that I have never had such a treatment before, or dealt with the aftermath. I mean, an Autoimmune diagnosis is akin to signing up for the human testing phase of several different treatments and drug trials at the same time. Sure, there’s relief from symptoms, but there are also side effects
    Many side effects are ones that everyone has heard of: fatigue, nausea, weight gain, headaches. Normal everyday stuff right? But those of us with Autoimmune diseases don’t take ‘normal’ medications. We don’t get ‘normal’ treatments. We are the recipients of prescription medications that have side effects that could be listed on a new Saturday Night Live skit. OK, I have yet to read “Robert De Niro face” on an insert, but some lists have come awfully close to stating “droopy lip”! Here are some actual side effects from my own medications:
    Med 1) joint or muscle pain, change in walking and balance, clumsiness, confusion, delusions, dementia, difficulty with speaking, double vision, blistering, peeling, or loosening of the skin, chills, burning, tingling, numbness or pain in the hands, arms, feet, or legs, diarrhea, difficulty having a bowel movement, red skin lesions, often with a purple center.
    Med 2) unusual tiredness, weakness, discomfort in the chest, upper stomach, or throat, excess air or gas in the stomach or intestines, passing gas, pale or blue lips, fingernails, or skin, ringing or buzzing in ears or any loss of hearing, unusual bleeding or bruising, muscle twitching, bleaching of hair or increased hair loss, irritability, loss of consciousness, mood or other mental changes.
    Wait a minute. I have Sjogren’s. Which can act a lot like Arthritis. So “Joint or Muscle pain”? “Numbness”? “Twitching”? “Weakness”? Aren’t these medications supposed to help STOP these symptoms? And “Clumsiness”? “excess GAS”?! “PASSING GAS”?! Ummmm…. Yeah, that’s what I’ve always wanted; to be able to belch and fart like a true champion. Well, at least now I fit in with the rest of my gaseous male family members. I’ve even won a burping contest!
    Keep looking though. There’s diarrhea AND constipation? Pale or blue lips AND unusual bruising AND red and purple skin lesions? Chills AND burning tingling skin? This is a symptomatic roller coaster and I really want to get off. But that’s the problem. I can’t get off. We can’t get off. We have to keep trying to mix these meds and these side effects into the perfect combination so we can have a life with minimal pain. And I for one failed Chemistry.
    So how do we do it?  Manage our pain, our diseases, side effects, and have a life? I honestly can’t tell you. But I can share this: I am sitting here with a completely numb head. NUMB! I get muscular headaches across the entire surface of my head. The muscles randomly swell up and cause severe painful knots. If I can’t get rid of these headaches on my own, I get a nerve block when I can’t stand the pain anymore. Sounds fairly simple huh? It consists of roughly 24 shots all over my head and face into the muscles along the major nerves that run up the back of both sides of the head, over the top, and branches down the sides and front. This numbs the nerves and allows the muscles to relax. It also makes my scalp numb for awhile! And my tongue. And the insides of my ears. Which now itch like they’ve been in a cast for 8 weeks! But my headache is going away and I will be able to do stuff again. Like read. Or drive. Or lay on a pillow to sleep.

    Oh yeah! And to type up these things!

Sharilynn Battaglia