First off, I want to mark #internationalwomensday and say that women hold up half the sky — and then some. I wouldn’t trade being a woman for anything, and I am continually inspired by the resilience, strength and power of women. Yay us.
Last Friday I received a call from my rheumatologist’s medical assistant informing me of the results of my recent labs and x-rays. The good news was that the labs were unremarkable; the bad news is that they are not sure what is happening with my cervical spine, only that the X-ray revealed “severe deterioration in the cervical vertebra” and they were going to continue to work on getting me on a new medication (immunosuppressant).
Frankly, the assistant was pretty clueless. She couldn’t answer any of my questions, and when I asked if I could speak to the doctor for just five minutes so I could get some answers, she said something unintelligible and then “if you take too long we’d have to charge you for an office visit.” Unbelievable.
I’d already been charged $25 by this practice so I could get the doctor to SIGN A FORM. That’s right, $25 for a signature. I sent the paperwork on Wednesday, and by Friday’s call, I still didn’t have it back, despite being asked to make payment immediately. They were very happy to take my money but dragged their feet when it came to returning the form. I still haven’t heard from the doctor today, but I took matters into my own hands and called UCGHealth’s Rheumatology Clinic in the hopes that I can get a second opinion.
Trouble is, UCHealth receives about 100 referrals a day and my records will have to go through medical review before I find out whether or not I can be seen. That takes about two weeks. It also takes about two weeks for me to get on this new medication (thanks, insurance companies), so in the meantime I keep popping ibuprofen and Tylenol, take Flexeril in a pinch (I hate muscle relaxers), and stay away from lifting anything or using my neck in a way that makes it “lock.”
I had a Missoula friend mention that my symptoms sound like what her husband has, and it took a very long time to diagnose it, similar to what happened to me. His diagnosis was multiple myeloma, or cancer of the plasma cells. I want to call/write her to talk about it more, but I’m terrified to entertain this possibility, so I keep putting it off.
It’s hellish, this limbo.
Today Sandy took me into her arms and told me she was so sorry I was going through this, that she knew I was trying to be brave. I thanked her for acknowledging that. Right now my main job is to not spiral into a rough emotional place. Life is hard enough right now, and battling this disease is taking so much out of me.
Despite all of this, I recognize that I am very fortunate to have the health care that I do, the support from family and friends, and a soft place to lay my head. Our furry kids keep me laughing with their antics, and every single day I love waking to my wife’s smiling face.
I’ve been listening to a lot of Strange Americans lately. They’re a Denver-based band that I met through my job at Black Shirt. Once we can see live music again, I plan to be front and center whenever they start playing gigs again. Lead vocals by Matt Hoffman, also known as New Mexican (his solo project) — his album Take it on Our Shoulders is phenomenal.
Keep those good thoughts and prayers coming my way. And thanks for reading.
Now listen.
“Everyone’s gonna find out…”
https://www.youtube.com/watch?v=4U0AD9cEFrU
Everything is Always Over 
We are so lucky, even with all of this. How many people have to face these things alone, or without insurance? I think about what it would be like to try to navigate the paperwork and referrals and appointments and plain old anxiety about my health, all the while worrying that I would bankrupt our family, lose our house, etc., just to treat a nasty condition…a rare condition, but not so rare. I say for the umpteenth time: The American health care system is JACKED UP.
All of this is amplified by a year of COVID and uncertainty about just about everything. Today the CDC said that vaccinated people could hang out indoors together, unmasked. Who knew–who possibly could have known–a year ago that we’d be so filled with gratitude for seeing the faces of our loved ones, for sitting in a room and eating a meal, laughing. I hope Meghan and I can do those things very soon.
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