Time to get personal again!
Last time I sent a newsletter with Information About My Health, I had to cover my eyes while I hit 'send.' I anticipated a wave of unsubscribes, because who wants to hear about my life?
You all responded in a way that completely floored me. I got emails through my website that helped guide me to better care, and people sent tweets that helped me get a functional cane, and the last month has been a healthcare triumph as a result. So I thought I'd share some extremely good things that have happened in the last month because of you, my subscribers:
I got a new cane! Several of you emailed and tweeted at me with Cane Advice, and all of it was so helpful! I learned that my old cane was the wrong length - it was about seven inches too long, and as a result, I was using it at an angle that hurt my shoulder badly. After my first time trying to use it, my neck and shoulder were junked up for several days, and it turns out that was all due to the fact that I am Very Tiny! I got this gorgeous new cane, which is featherlight carbon fiber and cut to size for me, and now I can get around even on bad days.
I didn't realize how much I was isolating myself before I got this new cane. Last year, at WorldCon in San Jose, my legs collapsed from under me in a public space - it was scary and embarrassing, and it turns out that the experience has stayed with me all this time. Having a new cane that works and can support me has made me excited about going outside again. It's reminded me how much I love experiencing the world. I can walk around even when I'm hurting. I couldn't have afforded the cane without your subscriptions, and I wouldn't have known that a functional cane was an option without your advice.
I got a lot of labwork done! Your emails and tweets also included a lot of information about how to engage with my doctors during this weird diagnostic phase of my life. I asked questions I never would have thought to ask, and I told them about symptoms that it wouldn't have occurred to me to bring up. As a result, my doctors have a whole new angle of approach, and we're narrowing down a diagnosis. For the first time in a while, it feels like maybe there's an answer in sight, and that's because of the stories and perspectives you shared with me.
I got new doctors! I don't have pictures of them, so that's Tinkerbell, who is technically a dog-tor.
Finding a new doctor is, to put it delicately as possible, the fucking worst. It's a thing healthy people often don't understand. Why not just find a new doctor who will listen to you better?
Here's the best way I can think of to explain it: A doctor is a stranger. Going to a stranger to ask them to care for you is already a nightmare. When doctors are evaluating new patients, their questions are invasive, and they need to touch and manipulate their patient's body in ways that are often painful. (Imagine going up to some guy at Rite-Aid or whatever and telling him how many times you poop each day and then he jabs your legs with a needle and asks if you can feel the needle.) All of that is already stressful - but then there are doctors who don't listen, who don't make eye contact, who call you crazy and say your symptoms aren't possible. For someone who's already tired and hurting all the time, seeing a doctor is yet another task, and it's one that carries the potential for pain and trauma and disappointment.
But you all gave me good advice, and good perspectives, and success stories, and that gave me the motivation to try yet again: another new doctor, another early morning trying to explain my symptoms and hoping that anyone would listen. And, you guys.
I got a new rheumatologist. She made eye contact with me and shook my hand. She was informed, kind, and receptive. She listened to my symptoms and affirmed them, by outright believing me and then by performing some basic tests to confirm her understanding of what I was telling her. She provided trauma-informed care, letting me get comfortable with her before moving into my space, and establishing safe, neutral touch before doing anything that would hurt me. She was knowledgeable, and she explained things to me in a way that I could understand, and she listened and she listened and she listened.
She sent me to a good neurologist, and a good dermatologist, and she explained how problems in my skin could reflect problems in my joints and my nerves. And now, I'm on my way. For the first time, I have good doctors who are paying attention.
That's because of you. That's because your subscription money lets me pay for insurance, and that insurance lets me seek out care. That's because your emails and tweets helped me to understand what I could ask for, what I could seek out, and what I might expect.
Thank you so much, friends. Next month, the newsletter will be back to the usual programming - expect a roundup of my most anticipated books of the year so far, and some highlights from my upcoming book tour! But I wanted to close out May by giving you, my subscribers, my utmost gratitude.
Things are finally looking up, and it's all your fault.