Yesterday I saw my new primary care doctor. It was a lot, but not in a bad way. It’s just that it’s taken me about 24 hours to physically recover from the outing. After 2 hours in a wheelchair for a very thorough encounter to establish care, I was wobblier than a gelatin entree from 1971.
You know, the kind with suspended Vienna Sausages in a green Jell-O Bundt ring.
When I got home, Dan had to push me up the wheelchair ramp and then help me into the lift chair so I could make it to our basement apartment. “Hug me!” I cried transferring from chair to chair because I had no faith in my legs. I felt like I would just collapse into a boneless puddle of goo right there in Mom’s hallway.
A while later when recovered enough to think more clearly, I said, “Dan, remind me that I just sat up for two straight hours and I am a badass. Exhaustion is not regression, and I’m being way too hard on myself.”
Now that I’m almost 8 years from diagnosis, not as many people are crowing about what a tough cookie I am, and my self-talk reflects an understandable but overly critical perception of my predicament that exists only in my head. I’m working on that, but it is actual work.
Overall the visit was good. I had my anxiety to contend with, but my doctor was sympathetic, telling me I had nothing to worry about. “That’s exactly my problem,” I joked. She laughed and agreed, which put me a little more at ease.
One thing I’m kind of excited about as a result of yesterday’s appointment is potentially getting in-home PT to recondition my muscles. When she said she’d look into physical therapy options that would be covered by my insurance, that’s when I knew I had stumbled on a provider who actually wanted me to get better as much as I did.
I have felt for the last few months or so that I don’t have to be this bad off. Something’s amiss, and my quality of life has taken a hit, but it just doesn’t feel like the tumor to me. I feel like I can do better and be stronger, and I want those things but need help figuring out how to get there.
Anyway, she even mentioned how she doesn’t want me to fall again because she doesn’t want me or Dan to worry about more stuff. Finally, a doctor who gets how stressful it is to have auxiliary burdens. I don’t know what she’s witnessed, whether in a personal or professional capacity, but damn. She understands the complexity of my situation even better than I was hoping.
Next week I go for labs, vaccines, and a follow-up visit to discuss thyroid dosing. (I owned up to being “difficult” and going back to my stash of 100 mcg levothyroxine pills because I felt better on them.) She’s ordering standard (for me) blood work including a lipid panel, thyroid labs, and checking how my numbers look for vitamins D and B12.
She acknowledged that sometimes labs don’t tell the whole story with thyroid meds and that my symptoms might indicate a need for some fine-tuning. I don’t have the capacity to elaborate on the thyroid stuff right now. But later. If I remember. For the time being the takeaway here is: I’ve been searching for a doctor who considers my well-being AND thyroid lab numbers for 20 years! So w00t!
Now I must rest. Happy SSDI payday to all who celebrate.
P.S. I still need about $100 to keep last month’s hospital bill for my routine CT and MRI imaging from going to collections. Check my fundraising status, donate, or share the campaign here.