Thursday, September 24, 2015

Year 34

September has always felt like New Years to me, the one in January simply a technicality. It's when summer turns to winter in my hometown. The overpopulation of tourists suddenly disperses and the lake becomes frigidly unswimable in a matter of days, wool socks and shorts in the same laundry load. School's just started. There's a nip to the evening air in Portland. I've been gone ten years but I'm sure it's still there. September seemed like natural punctuation. But maybe that's because it's when I began.  

My birthday is also my sick-iversary. Well, the sick-iversary of when I went from able to live a normal life, if managed, to unable to work, pay my rent or reliably get myself to a grocery store. The first birthday I spent in bed was my 23rd. Everyone deals with sick-iverseries differently: celebrate strength, grieve, treat themselves. I ignore it, go AWOL, and try to make my birthday as fun for my mom as I can. And I take comfort in the messages on Facebook from people I haven't been able to talk to in years. Even if it's something wrote they do everyday for all the birthdays, it's a reminder that I am still here, and was once out there. 

This year instead of checking out, trying to go numb and avoid looking at the mile marker of another year gone, I'm staring it down.

My 34th year, the balance sheet:

Neurologists: 8
Internists: 6
Various other specialists: 6
New diagnoses: 2? 1 for sure. 1 maybe (bringing us to a possible total of 8)
Nurses: dozens. Many amazing advocates and wonderful people.
IVs: 16
MRIs: 3
Hospitals: 3
Spinal tap attempts: 3 (unsuccessful:1, successful :1, botched:1)
Teeth filled without anesthetic: 3
New medications: 10
Unprecedented/disbelieved adverse medication reactions: 4
Precedented adverse medication reactions: 3
Physician tantrums: 2
Physicians attempting emotional blackmail: 3
Journal articles thrown at me by a Physician: 1
Chart note errors that compromised subsequent care: 3

States: 2
Towns of temporary residence: 3
Moves: 7
Dinners eaten in bed: 365
Family members displaced:1

Skills gained: 
Smart phone operation
Cheeking pills (see above re: disbelieved adverse reactions) 
Advanced IV pole navigation (sedated, in the dark, with ataxia. Woo hoo!)
Self cauterization
Blacking out windows without putting holes in walls
Ability to cry tears of gratitude 

Activities lost:
Watching the wind in the trees 
Laptop operation
Microwaving food
Looking out the window
Phone conversations

Occasions on which two separate friends took us in for literally weeks at a time: 2
Friends taking off work to care for me so Mom could go home: 3
Friends and family that helped us move: 6
People who tracked down my current address (no easy task) to send me mail: 10
Outpouring of support and well-wishes online from friends, family, people I haven't talked to in years and people I didn't even know: unquantifiable. Dozens? Hundreds? I lost track. 
And my sick friends with chaos and disasters of their own, no spare energy, who banded together to offer unconditional support in the worst moments when everyone else became overwhelmed. 

And the last paragraph is all that really matters. More tears of gratitude flowing now...

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