I went to write a brief message in Facebook, and it turned in to something I’d rather not force in our kids’ faces. They likely know where I blog, so if they want to, they’ll see this. They don’t need me to trigger their worry and if they want to know more, here I am. ‘Sides, my stuff isn’t terminal or life threatening, it’s just pain.
So, Thursrday was ridiculous. I had an appointment with my neurologist about 50 miles away. I woke in a ton of pain, but I only take my daily meds when going to a pain specialist (neuro). I want them to see me at my base level, with no pain breakers. I forgot how hard that was, as physical or psychological stressors wonk my body/brain out, and I ended up tossing my cookies on 95 south. Luckily, commuting to DC during two pregnancies long ago perfected my technique, and a short while on the shoulder later, we were back en route.
The nausea I’ve been sporting since the new pain relief the rheumatologist patched on me has been pretty hefty. I underestimated the amount the nausea was masked by the other medications. Because we spend a LOT of time in the car, I had the necessaries for cleaning myself up and off we went. Due to our delay, there was a gnarly bit of drama at the doctor’s office danced on my exhausted last nerve, but there is a ray of hope there, although not in regards to my treatment.
I was hoping for another script of the expired, Final Tier of pain relief, Soma. That’s the one that lets me sleep, immediately, regardless of the pain level AND wake woozy, but feeling rested. It’s the last resort/emergency chute in my pain relief options, because being unable to sleep because it hurts too much is crazy-making. Immensely crazy-making. No go, as he’s concerned about them with the muscle relaxer in my medical bag.
I’m grateful to not risk overdosing, but not knowing if the impossible pain may happen on the patch is scary. I’m sure I’ve mentioned that I carefully rotate the medications, and only when in Hawai’i did I allow myself to take the max allowable. I fear addiction and/or accidental overdose, but without any safety net? Crazy-making.
The treatment option he was pushing most was injecting Botox into my head, and the gesturing he did seemed awful and my neuro ship sailed. That pretty much describes the sensation I feel when something bumps up against my neuro triggers, it’s like a boat launching, a slow but lifting, lurch. I have to proactively halt the trigger or I’ll be flailing. For similar reasons, needles are a problem for me, and fainting has occurred (Have I mentioned how much I hate being swoon-y? Well, I fucking do. Being fragile blows.)
Doc was getting more and more a boner about a place in Reston that does the botox treatments, and I finally had to stop him because I was getting worried about the fainting sensation coming on. By that point, I’d been up six hours, after almost the same amount of sleep and almost all of those were involved in some sort of panic attack.
I was exhausted.
I finally told him that the thought of those needles filled with botox scared the shit out of me. He did nothing to reassure me and launched into the risks, and the whole thing leaves me confused. I have to man up and overcome the fainting issue (if I can) before I can take on acupuncture, let alone dry needling (different from acupuncture? more research once needle issues wrangled.) OR stabbing botulism into multiple locations in my head every three months until ???. AND a second opinion, as the risks are not insignificant.
But the neuro’s final prognosis seemed to be to be that we (my rheumatologist and me) need to make the Fibromyalgia pain stop so I can stop taking all the medications that cause migraines, so he (neurologist) can treat the migraines themselves. I had to remind him that I was sitting there because of the migraines that were occurring before the Fibro flared up and the pain meds for it started. My husband and I went to talk migraines pain management and function restoration, and he kept routing back around to the Fibro meds.
Kinda pissed me off, to be honest with you. I don’t want to be on ANY of these pills. They are toxic and result in my having to have frequent liver check-ups. They make me sleepy and no matter which ailment I’m treating, they worsen the other side of the coin of my symptoms.
If I were going to get a magic wand waved, I’d also make the migraines begone, genius!
All those hours in the car took their toll, and while I’m grateful for the relief I know I got, I’m thinking twice about the patch long term. I don’t like not being able to take on the pain to be clear-minded enough to drive myself to get a prescription, or milk, or whatevs. I can’t just snatch it off and on, like I can skip pain meds to be clear minded in the hopes of driving. It doesn’t always work, but it makes me less nuts. Independence is my fight against isolation, dammit. But I’m learning about the balance of pain and clarity in winter and the lesson is? Kaua’i is much kinder to my body in winter than Northern Virginia is, but this is where I live. Make it work. Make it so.
Another lousy thing is that my olfactory senses are apparently off the hook, so all I smelled all day was the odor of the morning’s roadside purge. It soured my mood for sure and kept the nausea close by all day. But…
Silver linings: My Viking. A golden blaze of awesome glory in the driver’s seat, Chooch. The talking, hand-holding, the positive but stern looks necessary to strengthen me, sharing media, our fussing, and our planning our way through a myriad of complications and giggles. There are always giggles.
Life would be mighty dark without the golden light he radiates. Even when we disagree, I know he has my back. And he knows I have his.
While we were in the area, we got to see our Eldest son. He has a place with his best friends, and we drove over to say hi before he had to go to work, started managing some collegiate stuff, deliver some new linens (hush, I’m his mom) and finally got to meet their new kitty, Mowgli. I love the name, since Eldest loved Jungle Book so much when he was wee. Sweet, cuddly kitty that likes to play rough suits the house to a “T” (tee? Meh. You know what I mean, right?). No pix, as I forgot my phone in the car. (Derp!) But I swear it happened! <3
I didn’t make the eye appointment, but did manage to see a friend who’s on a rough road. You know me, I’ll happily keep squinting to share a hug.
Virtual hugs, prayers and/or kind thoughts for all those that have muttered,”Fuck cancer.”