So today sucked

I work hard to remain positive and fight but today just plain sucked.  Today was my annual 2-hour visit with my otoneurologist.  In layman’s terms, that’s the doctor you see when an ordinary neurologist can’t figure you out.  And I’m a redhead so no one can figure me out. (If you don’t understand that, Google it.  You’ll be surprised by what you find.)

Anyway, the visit served as a slap in the head reminder that my body continues to deteriorate.  Bummer. And the long-term affects of my current medications to manage my symptoms are causing permanent damage to my body.  Yeah. Bummer. So, as my doctor put it, “We can continue to kick the can down the road for awhile longer…”  But eventually, I either deal with a collapsed bladder due to my steady stream of high doses of Valium long term, or I move to more invasive treatments for my cervical dystonia.  Neither option makes me feel warm and fuzzy.

Oh, and I’m tired of hearing that my dystonia is “bad.”  Yeah, duh.  I live with it every day.  Or that they can’t figure out what is wrong inside of my brain.  Or, (my absolute favorite) “When you’re dead please donate your brain to science, we could learn so much!” *Sigh*  My otoneurologist has a lousy bedside manner, but he is my miracle man.

I’m back to physical therapy, a psych consult,  paperwork explaining new drugs to consider, and a follow-up visit in 4 months!  I was counting on another visit in 12 months but they’re worried about my mental state.  Once again, yeah duh. Trying living with early onset of a degenerative, rare, chronic disease. I bet you would feel down at times too.

My husband came with me.  I don’t usually let him come.  But, I felt like he needed to be there today despite how well I have been doing this winter.  I was right.  I really needed him there today. Afterward, we went to a late lunch, and while waiting for our food, he began mapping out the rest of my life.  He’s a proactive solver; I’m an avoider. We are trying to figure out at what point I lose the Valium and move on to injections in my shoulders, neck, and head every 2-3 months.   He has my lifeline ending at 80 years (I didn’t ask about that magic number?) AND he so graciously reminded me that I will be 40 in less than a month.  That made me laugh.  It made me laugh hard. I guess he thinks I have about 40 years left?!?!  At least I made it through the day without crying.

I am finding contentment to be tough today.

#myoneword     #dystonia

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