Wednesday, May 23, 2012
Thursday, May 3, 2012
So back to the protocol. At this point my next step is the intrathecal baclofen pump. Just what I want. A hockey puck and a rat tail inserted in my abdomen. First a lumbar puncture of a test dose will determine if I am a candidate and then onto the surgery if so. I have waited weeks and weeks to get the injection, and who knows how long to get the surgery scheduled. Back to my point, trying to find medical help for MS is like finding a needle in a haystack. Unless of course you want to admit yourself, as the recording say "if this is a medical emergency dial 911", laying in a hospital bed being pumped with steroids or morphine is an option, and can be extremely appealing on a bright sunny nice day while your buddies are on the golf course.
Simple little tasks that healthy subjects do without thinking, answering a text message, returning a phone call, grabbing a water, hitting the john, these things are exhausting to me. No, distressing to me and anxiety riddled. Laying in a chair watching a ball game? Forget it, the pressure and sitting create stiffness and pain beyond imagination. Comfort is not a possibility at this juncture. If I don't return your phone call, or don't text you right back, you now have a better understanding of why. This is the reality of MS, a cold hearted, relentless, thieving, thoughtless, game changing, life altering, joy stealing, pain inducing, heat intolerant, time consuming, mind altering, family stealing, energy sucking, brain draining, immobilizing, passion grabbing son of a bitch. Boy his attitude sucks you say, well I have read all the self help books, do the pilates, massage, stretching, PT, eat well. live in the moment, head all the advice of friends, cry once a day like Buddha did and talk to other struggling patients and the like, and I am not scorned, and not complaining, well maybe a little, but really just honest and a little pissed off. And deservedly so! Go to bed with an ailment and instead of waking to find it gone, try finding it the same or worse, over and over, repeatedly for days on end. It wont' take long for your shoes to be full.