It probably doesn't help that I'm listening to Holly Golightly signing "Slowly But Surely", or that it's a grey, grey day, or that I'm still at home with a migraine/headache that has been constant since September 30th. This is a new and unpleasant experience for me...me from the family of "no blood, no foul" and my personal favorite, "you can find sympathy in the dictionary between shit and syphillis". Me of the marriage to the man who is disabled with a chronic pain/neurological issue for the last 6 or so years and deals with it well. No matter what, I was always the type of person to get up, find a way to fix things and move forward...that is what I do.
But right now I feel stymied by the cage of bureaucracy I find myself in--stuck between the bars of doctors and insurance companies and short-term disability organizations that all move on their own timeline regardless of what the other company, or patient needs. I thought since I've been diagnosed finally with Occipital Neuralgia things would get easier with the paperwork, but actually not. Go figure.
Am I receiving good care? Yes, I believe my doctor has a firm grasp on the issues and is working a conservative, but smart course of treatment. And, as a bonus, I like and trust him.
But I'm realizing that "care" is a complex entitity for me. Just like with your children when they are sick, medicine is never enough--they need the right blanket, the right stuffed animal, the right lap to be cuddled in. The right story at night, the right whispered conversation in the middle of the night and the right silly movie from the couch in the middle of the day.
I doubt it's just me, but adults on short-term or long term disability need our own version of these things:
My own version of my "blankie": a call from the boss to check in on you, to let you know that you are still a part of team. Calls and notes from friends and families...not about getting well, but about connecting you to things outside of your own head and body.
Things you can count on: like the right records being faxed to the right entity without having to check and double and triple check. Promised updates on your 'file' coming through when they are supposed to. Knowing when you are going to get paid so that you can take care of your family.
Things you can accomplish: whether it is cleaning out the junk drawer in the kitchen or trying something new like knitting. I've spoke of this before on this blog, but it's about having a "purpose", whether big or small, aside from getting better or well.
(Egads, now Richard Thompson is singing "Beeswing"--I've got to play something a little more chipper.)
Luckily, I have a great "blankie" with my friends and family, and I've got a good list of "purposeful to do" things that don't make my headache worse. The "things I can count on" are a bit more problematic and cause anxiety which then rachets up the old headache....viscious circle.
(Okay, Lords of Acid, "Let's Get High and Have Fun" sounded better in theory than practice...Now I'm back to Nina Simone, "Four Women".)
The worst part of it all is feeling like you are being judged for taking Short Term Disability for something like a headache....even when I explain that it's been constant since the end of September. Even when I explain the double vision, the nausea, the speech dysplasia, the pain that makes me want to grind my knees into a rocky asphalt road while hoping for a car to come by and just clip me a little. It didn't help when my first doctor asked my husband, in the context of the FMLA paperwork, "How many times has she tried this?". Me, a 60-70+ hour worker, who is always there for the people I work with and for! Lowest point, definately.
But I know where to find sympathy, right? And relatively, I've got it easy...there are bigger problems in the world and people more worthy of an "emotional blankie" than little old me. Besides, I've got Yoga tonight...that's good for at least two or three good giggles at myself.
So, I'm ending this with Hello Saferide and "Last Bitter Song". Fitting.
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