~secret code stuff~

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Currently (2020) my most updated blog is pinkfeldspar.

Spaz is a useful side blog for sorting other stuff out.

Monday, October 17, 2022

it wasn't really my ears

I guess it would be nice of me to come back here and continue with how it turned out. Here are some updates I did on another blog, my little journey through physical therapy for a dislocated jaw. Yes, THAT is why my ears were hurting so bad for so long.

4-20-22 magic 

4-27-22 space case 

5-5-22 just dance 

6-3-22 back on moc 

The main results are pain level being drastically lowered and finally being able to sleep with CPAP on again. 

Wednesday, April 13, 2022

ears-not-ears, that is the question

Was looking for a pain meme, but that was more like this week has really been, minus any police involvement.

Back on the big bad boys, the kind of pain meds they count suspiciously if you ask for more. Now that we're getting this ear pain mess figured out, it's time to go deep tissue again on some nasty fibro inflammation. This is THE SPOT that started it all in the big car wreck many years ago (how my neck didn't just snap I'll never know but thank you God), and after being in and out of therapy since 2011 and years of chiropractor before that, if this doesn't work I may finally cave to shots in my neck. The headaches have gotten a bit unreal again last few weeks, well, since the big back to back to back viruses all through January and part of February. Was already dealing with the inflammation around upper neck and jaw when that all hit, but since then it's been bad enough to keep triggering nausea and vertigo, and ENT ruled out ear causes for that. The vertigo is coming from pressure on nerves around my ears from all the muscles from collar bone up to skull going almost rock hard in weeks/months of super fibro flare and that in turn creating inflammation locking up all the tissues with even more swelling, just loads of pressure on the old cranial nerve damaged areas, even though they've been healing for years. I dunno if there is such a thing as nerve arthritis, but it sure feels like that. Anyway, now that we're addressing it, the nausea is clearly from pain levels. My pain level has been so high this week that it's setting off migraines, nasty vicious loop cycle we're hopefully breaking through.

So yeah, primary put me on the kind of tramadol dose like you just got out of major surgery. I'm breaking them in half and spacing them out so they'll last longer and I won't have to ask for more before therapy is over.

Other than that I seem to be doing fine. And the therapy must be helping because I'm noticing an increase in chores getting done.

I still have this note taped on the back of my bedroom door from years and years ago before I got all my stuff disentangled. I didn't have the greatest doctors and I wasn't very good at communicating, and during the worst of it I wound up in 3 month cycles of antibiotics and handfuls of pain meds for several years before I finally took the reins on my own healthcare. This was my first step as a person on autism spectrum learning to assess myself during lengthy confusing muddles through lupus flareups, severe depression, and whatever else popped up that kept getting mismanaged by not the greatest doctors, which included failing to diagnose diabetes.

If you are experiencing any of the following, you may be sick and not just "feeling rough".
  • 1- crabby and resentful about everything in general, no matter what
  • 2- sad and weepy about everything in general, no matter what
  • 3- watching slow onset of anything sinus, ears, glands, headache
  • 4- digestion is involved in any way, i.e. pain, severe heartburn, intense hunger
  • 5- pain level spikes anywhere in spine require extra pain management with drugs and ice
  • 6- level of mobility, flexibility, or stsamina decreases markedly, i.e. klutziness increases
  • 7- feelings of mean, spiteful, hateful, or anything sarcastically cruel seem funny
  • 8- sleep amounts sharply decrease over several days
  • 9- anxiety increases, a need to "keep moving" drives you out of chairs and bed to keep 'escaping' the pain
  • 10- forgetfulness increases, words during speaking get mixed up more frequently, misunderstandings during others speaking happens more frequently

If ALL these things are happening together, stay focused on needing a doctor appointment.

The problem with basic healthcare nowadays is that it has become so streamlined and compartmentalized that it takes a very determined patient to spend extra time with all the right doctors and a level of persistence that will stay focused on ruling out underlying causes. Like my ear pain. I initially addressed that with my sleep doctor a year ago during allergy season and asked her to refer me to ENT because my ear pain would go up so much during CPAP use at night. That referral got moved so many times because of stupid covid, that office lost their 3 main doctors and the rest kept rotating through positive covid tests, and then I had to go out of town and later on I was the one stuck at home being sick. In the meantime, 3 different doctors during clinic visits for other things told me my ears looked fine and never offered to check anything further. ENT said if I wanted to I could get an MRI to rule out tumors, but that's a long shot and I've had so many MRIs over the years, my history is clearly more indicative of fibro inflammation around old injuries. But it took nearly a year just to get a specialist to say it was inflammation around my jaws putting pressure on my ears. And after that it was up to me to ask primary for a referral to physical therapy because ENT wouldn't go any further than saying that area is more for a dentist to look into. I've already lived through decades of this, so that was a big fat fail, but at least ENT ruled out ear involvement causing the ear pain.

See what I mean? It really does take focus and grit being a long term chronic patient, especially on spectrum with noted depression. They call me a 'frequent flyer' because I don't just go home and pop pain pills and drink myself to sleep. In years past doctors would throw antibiotics at me misinterpreting the pain and 'swelling' around my glands under my jaw, turns out it was fibro inflammation. Imagine years of that. So me stepping up and taking charge of self assessing and then deciding who I make appointments with for very specific reasons has been what has gotten me off handfuls of meds every day, back on my feet and out of handicap spots, and apparently on top of controlling lupus flares since the last one was 8 years ago.

Friday, November 5, 2021

"they extinguish the spirit within you"


“I didn’t know that there was untreatable pain.”

Yes, there is such a thing as living in untreatable, intractable pain for decades. I've done it, and I am not alone. Hundreds of thousands of people across the nation live with continual unrelieved pain, and many of us understand the opioid crisis because opioids used to be the gold standard when all else failed.

That quote is from Tucker Carlson this week after an emergency back surgery. Tucker is the most watched news show in America and isn't prone to drugs and alcohol, according to this article

What Carlson, who said he will never take opioids again if he can help it, found most interesting was what the drugs did to his spirit.

“I had this spirit of fear within me, which I don’t have,” he said. “I’m not bragging, I don’t have it. And I think you can feel it. I don’t have it, I think that’s why I’m successful, cause I’m just not afraid. I felt afraid just of like life or something. It’s interesting.

“It was super deep. And I just haven’t had those feelings since I was in a plane crash 20 years ago this month. I’ve never had those feelings. I’m always like ‘Yeah I’m gonna die, I don’t care.’ And I mean it. But last night I was like, ‘Oh shit.’ Fear—just like anxiety. People who have anxiety, that’s what I felt. And it was from those drugs. And they extinguish the spirit within you. And they make you feel like you’re running away. You’re hiding. It’s so fucking deep. I’m lying in bed filthy with dog toys on my pillow, and it doesn’t bother me. And I’m not that way. Like I am a fucking—in real life, I wash the sheets every day. I’m that guy. I shower every day.”

I've had doctors so inexperienced with real pain that they couldn't understand why I was still complaining with them tossing top of the line addictions at me like dealers, and I found no relief until I scraped together everything I had learned and rebuilt my healthcare team with my own set of goals and standards. I am now off all those meds, thanks to both a psychologist and a very excellent physical therapy team focused on psychoneuroimmunology. I have regained quite a lot of function and my pain levels are lower now without meds than they have been most of my adult life. Other crucial changes were finally getting a primary care doctor who didn't hesitate to fix previous doctor failures to diagnose diabetes and send me to specialists like an endocrinologist for my thyroid. If a doctor is stringing you along on medications and you feel like you are getting nowhere, step back and assess your situation and make some changes. Even in our worst situations, it is up to us to fight for our own health care priorities against Big Pharma dictating what doctors do to us. There are good doctors out there, sometimes you have to grind through humiliating visits as a new patient until you find one.

"They extinguish the spirit within you." Yes, that is exactly what Big Pharma and the international drug running cartels are all about. Break free, but be smart about it. Do your research, don't quit anything cold turkey, learn to titrate slowly off meds, make sure you do have a doctor in the loop so that it's documented in case of a med crisis or medical emergency, and be very patient with yourself. It took me years to get off the handfuls of meds a couple of doctors had me on. I was dumb and quit librax cold turkey and wound up in severe withdrawal and needed a med rescue. I was on opioids for so many years that I get the shakes when I get even a baby dose of morphine in an emergency room. I was on so many meds for so long that I'm high risk to stop breathing for a long time in my sleep even on a very low dose of one med at a time now. So go slow, learn what you are doing, take your time and do it right. Medicare and many insurance plans will pay for physical therapies and mental health visits, take advantage of that.

We are so used to celebrities and sports stars who wind up addicted to something, it's really rare to hear about a healthy person not having a clue what the drug crisis really is like and giving honest feedback about how horrifyingly spirit draining being medicated is. I appreciate Tucker Carlson sharing his experience.