kirsten and the quest for a diagnosis, migraine, nortriptyline

End of Year Health Update

It’s been a while since I did a health update on here. Things are going… okay? As of last week, I was discharged from pelvic floor therapy. This week, I anticipate being discharged from neck/back PT as well.

Around Thanksgiving, I joined a gym. I’ve been working out 3-6 days a week, depending on how my body is doing. I know that when my body winds up being very numb, it isn’t safe for me to go and do much. Despite being on a prednisone burst, I’ve lost ten pounds in the last few weeks.

I had a follow-up with the neurology physician assistant earlier this month. I left unenthused, to be frank, and frustrated with the lack of care I’m receiving. The PA was more concerned about telling me to do things I already do and medication-shaming me than working with me around the very odd symptoms that reared their ugly head big time this year.
I find it alarming to tell a patient in distress that there are medications that can alleviate their symptoms but they’re on “enough already.”

Still, we added in B2 and magnesium which – when I take them both daily versus as needed – have helped with my migraines. This has had no effect on my odd numbness, though, as the PA assumed it would. This tells me that my odd symptoms aren’t related to my migraines (as she assumed) or that these levels aren’t enough to tackle the issue.

a variety of pills, capsule, and tablets of a variety of colors in someone's hand

It takes me about 20-30 minutes to take my morning meds now. It’s frustrating to have to sit with illness first thing in the morning for so much longer. That said, I know doing so helps me to process this stuff all better from a physical standpoint at least.

I’m wondering whether or not my odd symptoms combined with worsening rash could be something related to mast cells like Mast Cell Activation Syndrome (MCAS) more than anything else. I’m playing with the idea of calling for an evaluation. Honestly, I’m avoiding it because I can’t handle another doctor refusing to listen and shaming me for using medications to live a higher-quality life.

On the dental front, there are two crowns we have to do. One is on a front tooth and another is on a back molar that really doesn’t function. I’m not sure that it’s worth saving that tooth honestly. The cavities we’ve been playing catch-up with are taken care of now, thankfully.

My acupuncturist has been incredibly helpful, getting me to unwind more than I was when I was going to a clinic for this. He’s so much fun, too, and we talk a lot about sex education, impromptu consults, and more. I don’t think I’ve ever left every single appointment with a provider with a hug and renewed peace of mind like this.

I was lucky enough to snag three free months of Talkspace back when they were giving free months out for survivors of abuse. I haven’t utilized my therapist very heavily – partially because I always skirt the big things – but it’s been helpful to have. She’s great, only lives a few hours from me, and is incredibly similar to me in the best kinds of ways.

Over the last few weeks, we’ve dealt with Jaq having an upper respiratory infection for weeks (which can be fatal quickly for guinea pigs), major depression, apartment issues, increased rash, interpersonal havoc, and more. It’s been a lot to handle on top of everything going on in our country and world.


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