№347; sometimes scary.

I haven’t made new years resolutions since I was in high school. I feel like the hype and the pressure set us up to fail. I do, however, consider the new year a good moment for reflection and improvement, so I make lists. I do, however, want to go more deeply into some of my goals for this year. Today: “Get a diagnosis.”

I’ve spent much of the last few years trying to get a handle on my future, but in doing that I’ve somewhat neglected my present. This year, I plan to change that pattern.

Four years ago, I was in debilitating pain at work in Cambridge, MA. My legs were numb and non-responsive. My hands stopped working. I got out of work and took a cab straight to the emergency room at Massachusetts General, on the advice of my GP. They immediately admitted me and took enough blood to make me pass out. At least I wasn’t in pain. The ER doctors’ first thought was cancer. Which at 31 (and I suppose, at any other age) and otherwise healthy is a sudden, terrifying thought. They tested for all the cancers. Nothing. They did a deep family history with me, and when the ER couldn’t find anything immediately, they assumed I was an addict trying to get a fix. I won’t lie – and I didn’t then – I have a history of addiction. At this time, I was nearly six years clean. I told them as much. I have no history of trying to ‘score’ at hospitals, and told them they could call my doctor, my psychiatrist, and/or my therapist, if that helped any. I would sign any forms they needed in order to get my history from any of my care team. They, thankfully, believed me, and moved on. I was admitted to the Neurology department would spend five days in physical therapy, be subjected to dozens of tests (including a spinal tap to test for MS, the results of which wouldn’t come back for over two weeks, and so many ‘reflex’ tests I had bruises up and down both of my legs for weeks), and wasn’t allowed to go outside for a cigarette. They kept me on a constant supply of Ativan to keep my nicotine cravings at bay. I slept a lot. I had visitors, but I didn’t realize it. I cried a lot, too.

At the end of the five days, I was sort-of-walking again (hobbling might be a more accurate term) and was sent home for bed rest. I got home to a beautiful, lavish bouquet from my bosses and coworkers, and strict instructions not to worry about coming back to work until I was ready. I was less than a month from moving nearly 1,000 miles to South Carolina. I wasn’t allowed to drive, carry anything, and could barely keep down food from the exhaustion. Still, I had no answers.

February will be four years since that happened, and I am still no closer to an answer. On top of the mobility and numbness and pain issues, I now have migraines/tension headaches on an almost daily basis (for a year now), my back will completely seize sometimes and I’ll be unable to move, barely able to breath. I have met and worked with some amazing doctors here in SC, but still, no answers. I have tried multiple diets (never with the intention to lose weight, I’m not allowed at roughly 100 lbs), multiple supplement regimes, physical therapy, chiropractic, massage, more sleep, less sleep… You name it, we’ve tried it. Nothing. My coworkers and bosses have been amazing, I’ve spent almost four years at my bar and never once have I had issue professionally because of my issues. I know how lucky I am.

It’s infuriating and sometimes scary and at times I’ve resigned myself to this as my future.

It’s not, though. Grinning and bearing it isn’t the only way! At the end of last year, I finally got a referral to a Rheumatologist and Endocrinologist (who, again, took a whole bunch of blood at first! I was a woozy mess the rest of the day!). This team of doctors are actually willing to work me to find answers. He listened to me. We spent an hour going through my history. He acknowledged my pain. I could have cried in relief and happiness.

I don’t have answers yet, but I have more tests scheduled (I’m so tired of medical tests, but honestly I’ll sit through every single one of them ever if it’ll help!), and for the first time in years I have hope about this. I know that getting an answer won’t automatically fix anything – very few medical issues have a ‘magic pill’ – but at least armed with information, I can move forward.

When you focus too much on the ‘inevitable’, you can’t see all the ways you might change it. 2020 is the year I focus more on the possibilities, rather than any forgone conclusions.


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