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Thursday, July 7, 2016

musical meds, or, the delightful trepidations of pain management


I wrote this last night.

Doctor follow up report-
  • What I was assuming was still withdrawal symptoms from atenolol taper has been deemed breakout SVT, so I get to switch out calcium channel blockers but stay on the beta blocker as is for now.
  • The morphine reaction I had in the ER 2 Saturdays ago has indeed been agreed PAWS (post acute withdrawal symptoms/syndrome) and I am to never have opioids again, EVER. I. am. an. addict.
  • Pain management is taking a sharp turn into neurontin over the summer while I wait out the heat-inspired fibro flares. I'm admittedly nervous since I took a bad head trip on lyrica a few years ago and my moods have been a mess lately, but it might possibly help with that, too, if it doesn't cause a meltdown into #destroyallthethings first. I may be making a touch base appointment with my psychiatrist to monitor me since there are warnings galore on that one. I'll start it this weekend while Scott's home in case I get weird.
  • My ears look great, so ramping up the zyrtec again was a good call. They feel full and I've had a sore throat, but Mirkwood has gone jungloid on us, and I'm pretty sure all that pollen will eventually mutate me into a giant insect before it's all over.

In the meantime, the Lhermitte's zapping around my left shoulder across my clavicle and shoulder blade and up my neck are going off almost every 5 minutes now. I'm coming really close to wanting cortisone and general anesthesia. I'm guessing that we have been working backward through the years of gradual nerve shutdown and all this coming back on again is mimicking the journey backward. At least I'm hoping so. There's no actual sign of progressive illness going on other than the arthritis in my spine, so yay.

I've decided to share the rough stuff a little more over the summer while I deal because-
  1. It helps spoonies to be able to compare notes
  2. It makes my mood swings more understandable
  3. Talking about my pain while I'm in pain makes me cry, writing is easier
  4. This helps me feel more organized and empowered
Is there really a real Plan? Because I've been kind of dropping the ball...

YES. I am blessed with a friend who has been providing personal tech support and key observation input for distraction and dealing. Yesterday was a drag on my head in every conceivable way, but the utter calm and patience of my handler inspired me tremendously. I was able to process and incorporate the experience overnight and woke up feeling ready to tackle the world again, even with a near-nasty pain level and my depression at an all-time high.


I once said I'm the Jack Bauer of depression survival. What my readers witness as I live-blog is the power of the Pinky love letter. I know, those two sentences look horribly mismated, but it makes sense when you know all the stuff. Basically, I'm rotating through a network of support and a good medical team. It took a few years to put it together and get this far, but every hard step has been worth it.

I'm going to be ok. It's important to say that and believe it because I've come so close to not being ok at all this year. I *want* to be ok. How badly do I want this? Badly enough to talk about it on Pinky blog.


I'm dreadfully behind in a list of projects I want to do, but you know what? That doesn't mean anything bad. It used to bother me, and then I couldn't look at it for awhile, and now it feels like stuff to do when I'm ready. Sometimes part of being ready means taking a gap month or two and working on being healthy, you know?

Realistically, though, I'm managing every minute through a static wall of suck, so all this big talk was a nice window of sunshine in an otherwise dismal day. At least it feels like that. Depression lies and pain drags us down yadayada.

Now it is today.

Adjusting to new blood pressure meds is no picnic, and I've learned to just stay prepared for a trip in if something goes awry, such as dressed and hair washed by 5:30 a.m. before I take it at 6 with my breakfast shake.


I sound overly cautious for a reason. The last time my doctor tried to get my BP meds changed I wound up in ER 4 times with super poundy SVT breakouts and I walked around with my blood pressure up in the 180+/110 range for nearly a month. We finally conceded to going back to what he was trying to get me off of just to get it all calmed back down again. This time we are going super slow, easing through very careful changes with my original in place for backup control, and this could conceivably take all summer. With any blood pressure med change or withdrawal comes risks for heart attack, and I have a rhythm history that goes back to high school, so...

Imagine going through all that on top of a pain syndrome referring like mini electrical shocks through pain centers in your chest.


Ok, plan today (if all that doesn't go south) is keep digging my mobile office out of the very scattered multiple explosion strata that has defied my every attempt at organization over the last year while Bunny has herself exploded through super ADHD toddler phase.

This is the most accurate representation I've ever seen of what it's felt like making it through my life in this body.


Still hanging on.

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