February Health Update, Delayed

Author: Vivid Muse  //  Category: Health, Whining

I returned to my longtime neurologist, since he has all the documentation of everything involving my disabilities, having given up on hope of body pain relief via Western medicine. I still visit her to check in and track disease progression, but my focus is on the migraines that leave me completely batty at times.

After discussing everything and our  Dr. P started me on a new daily medication, with instructions to double it after 10 days, to what would be my maximum safe dosage range. It’s one he’d put off using in the past because of concerns on how it would impact cardiac issues. I had worse migraines than before and he dropped me back down to the initial half dose and wrote another, new prescription. The last he has to offer, in his bag of tricks. I am giving myself a lengthy wean down on it before starting the new one. The side effects impact every person I live with, after all, and these are mood-impacting medications.

He also suggested Botox injections for migraine relief. A months-long panic attack ensued, in spite of knowing it’s safe. (No, I won’t look younger, the injection sites are primarily on the scalp and down the back of the neck.)

The needles are like acupuncture needles and it’s done in the office, it’s such a mild treatment. None of this reassures me because I keep wondering why it’s sane in the year 2015 to inject botulism into 31 locations on my head, every 4 months. If insurance covers it and if it works. Good news? Can’t make me more stupider! Hubby promises my skull can’t be penetrated and my brain injected with botulism. He hasn’t led me astray yet.

As of now, I’m about to start the last new daily and for some reason remaining on the half-dose of the last daily. Sure, I’m hopeful, but am again suffering from hope fatigue.

I mean, do I have to get my hopes up each and every time and pray they aren’t dashed as I more slowly realize that this solution is as ineffective or toxic as the last however many dozen? Can I just skip that part as I swallow it down and await results? I’m utterly exhausted from being hopeful on my medical stuff and I’d rather put it to use elsewhere in my life.

If it does help, trust me, the world will know it. I just don’t have the energy to get super hopeful and excited with so many other things in the world. Pain is pain, and it isn’t (knock on wood) deadly yet, so I’ll just save my hope for something else and keep a keen eye on the results before I get excited.

I am super annoyed for the five years of delays to dealing with *my* prior health concerns/goals.

And I am super tired of being a fucking lab rat/guinea pig.

And I am super motivating myself to take major steps on the breast cancer risk assessment. There, I’ve said it out loud, so I have to do it.

Countdown to our grandson Little Bear’s arrival: 11-ish days and counting! My phone app says he’s the size of a watermelon! Our poor daughter(-in-law) is completely overtaken by him and I can’t wait to offer to give her a break on carrying him all by herself, once he’s born and they’re ready to share.

January 2015 Health Update, Delayed

Author: Vivid Muse  //  Category: Health, Household, Whining

I’ve still been chasing a return to normal health and a normal life for the last 5 years. What started out as debilitating flu symptoms, which after much testing, led to a diagnosis of Vestibular Migraines (migraines, near-constant dizziness, fatigue, memory and comprehension/cognitive problems and HIGHLY entertaining neurological problems). I want nothing more to be useful again, both in income and employment satisfaction, running and exercise, parenting up to my standards, podcasting and public speaking, putting creations into the world, and just living more fully.

It was a shock, especially as swiftly as onset incapacitated me, but in hindsight, I’d been battling my headaches and other symptoms while minimizing their importance for years. They were nothing compared to what my ex-husband’s family experienced with their hereditary migraine issues, so who was I to complain? The frequency even triggered a halt to using Tylenol products because of their liver damaging potential, and I’m still not allowed to take them.

Five years later, I have a mixed bag of chronic illnesses, having added fibromyalgia, tmj, etc., and have been chasing pain relief since November of 2009. Onset was a spectrum of symptoms from what was diagnosed as vestibular migraines and as I learned to adapt to them, symptoms of tmj and fibromyalgia became the focus of attention. When nearly all of  of my 18 tender points, if not trigger points, are firing off pain, it’s easy to understand why I was chasing it as opposed to the migraines I’d been receiving treatment for almost 3 years for from my respected Neurologist, Dr. P.

I’d been juggling both, with nothing more from my neurologist at one point than break-through migraine pain management continuing, until last year. Dr. P. told me he couldn’t help me with my migraines until my Rheumatologist and I had my Fibro under control without opiods, which are migraine triggers.

He was concerned about possible interactions and took away my final tier of pain management – a pill that lets me sleep, no matter how intense the pain. That pill kept me sane for many years, just by being in my possession. It was reassuring because if the pain became unbearable, I would still be able to relieve it through deep sleep.

Many times, I would awake rested without the migraine. I rarely took it, as it could be risky for me to use otherwise, since I would have taken other medications up to that point. Again, just a reassuring pat would lower my anxiety and panic response, and at times, was calming as a valium.

And then, just, gone. It was a scary adjustment, but not earth-shattering as other life issues have been pressing in as well. I focused all my efforts on finding something with her that would work, trying a variety of medications and having some gnarly reactions to all of them.

Then, end of last year, I reported to my Rheumatologist the results of the latest pain cocktail, and she told me that she doesn’t have any other options to try on me.

Now I’ve redoubled my efforts with my Neurologist, with only a handful of options left.

I realize these health issues are nothing compared to health issues of others that I know or don’t know. But I grant myself the same kindness I do everyone else — a person’s pain shouldn’t be compared from one person to the next because we are all traveling with our own sadness, regardless of the reason.

It’s not a competition, this is me speaking about me, in a place I feel safe to speak, humbly, before I forget it.