~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.

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.

Wednesday, September 15, 2021

thyroid, prostate, science...


And then I scared myself silly reading articles on thyroid storm. 😳 I allowed a very fat endocrinologist to let me hover around <1 on my TSH for years, and when I got a new doctor last year she started suggesting backing down little by little. Well, she's changed dosage twice, last summer and last winter, and I still keep going hyper, like .29 kind of stuff. I never would have connected the thyroid dot if I hadn't seen that number. I was chalking it all up to IBS causing my palpitations for months. I didn't know thyroid, IBS, and heart issues are a red flag triad, which you'd think I'd be more aware of since I've been on a thyroid med since my late 20s.

I've apparently written way in the past somewhere about a monitored double hormone crash I went through in 2012, starting around Mother's Day and lasting into the summer, but I can't seem to find it so I'm going to write it out again. I had been on birth control pills for years, those raise blood pressure in general while blocking thyroid hormone, so I was on a big load of beta blocker and a pretty high dose of synthroid just to keep things steady for 2 decades. As I aged, I kept getting 'breakout' blood pressure spikes to the point where I was labeled a 'frequent flyer' in the ER and landed solid notes about hypertensive crises. One month got so bad after years of heavy estrogen monitoring to control female problems that a gynecologist suggested getting OFF the birth control, and the next year I had a uterine ablation to stop bleeding altogether. But in May of 2012, simply stopping birth control sent me wildly skidding through super hyperthyroidism, since it was no longer there blocking thyroid hormone, and that in turn super spiked my blood pressure surges, heart rate, and especially anxiety attacks. So, my endocrinologist monitored me also stopping my thyroid pill, and I went into the craziest freefall, monitored by my psychologist. He kept talking me through feeling crazy, through feeling like I had snapped hard into a nasty midlife crisis, because thyroid can affect everything about mood, emotion, and cognitive function. As my thyroid slowly ramped back into normal territory, my blood pressure spikes slowed down and finally mostly stopped. I was put back onto thyroid and blood pressure meds and monitored over the next few months to make sure I had stabilized.

That endocrinologist had me convinced that my TSH could go as low as whatever as long as I felt ok, so I learned to not even concern myself with it. Years of him ignoring my questions turned into my own complacency. Granted, he saved me from a previous doctor that kept allowing my TSH to soar completely off range in the other direction (she also failed to diagnose diabetes, opting instead to pile handfuls of pills into me and monitor me monthly for more antibiotics), but over time he kept adjusting my dose up until I was at the other extreme. Because of my years of learned complacency with him, I've been tolerating a couple of years of palpitations that have become a bit alarming, and now I've got the full range of symptoms of hyperthyroidism.

My newest doctor, been seeing her for about a year now, immediately checked me for vitamin D and found I was very deficient. She also added CoQ10 and has been monitoring several areas of improvement over the year. One of the biggies in my improvements list was being able to get completely off antihistamines after years of dependency. I'm currently getting through what some consider to be a particularly nasty ragweed season without much more than allergy eye drops and occasional nasal spray, not even every day. I'm not fighting snot or experiencing the usual raw throat or anything else.

So now I'm wondering about D and CoQ10 affecting thyroid health and running into articles about Hashimoto's being a curable inflammatory disease with genuinely proper (not govt directed) diet and proper (not FDA directed) nutrients. I'm literally watching my Hashimoto's either getting better or crashing into runaway hyperthyroid. If hyperthyroid symptoms abate by simply adjusting dosage on my synthroid down, I'll be leaning toward healing.

I've written a few times that I haven't had an autoimmune flare since 2014. I've documented across blogs that I made a plan in 2008 to create my own health team and learn how to be healthy. It's taken years to clean off prescriptions and change my diet and deal with getting some exercise in a body that was once granted full disability with many legal restrictions because immobility was so bad, and I've gained enough back to not only actually hold a grandbaby (I dropped everything for years), but to walk the floor holding a baby for a solid month. I have years of blog posts bringing up losing my hands and arms to nerve fail.

So watching my synthroid dosage being adjusted DOWN 3 times in one year is blowing my mind. I'm finding articles other people have written about being able to get completely off thyroid meds because they regain normal function as they cut inflammation down throughout their bodies.

If someone told you it was possible in your older age to get back to normal health, would you believe it? On the one hand, you've got a carefully constructed medical system designed to dismiss actual curing to preferably control illness symptoms indefinitely, regulated by insurance companies that can kill noncompliant careers in medicine, all directed by big pharma, the FDA, and the CDC establishing what is 'good' for us and 'bad' for us and anyone coloring outside those lines is harshly belittled and sometimes (in the case of whistleblowing lab techs and doctors) 'disappeared' or 'suicided'. Once in awhile it's an obvious murder, but it gets buried pretty quickly in our daily (hourly) 'news' onslaught. On the other hand, you've got a few people trying to keep getting the word out that there are real cures, and they are cheap and easy and being withheld from us. Once you take a step back and really look at this situation, it looks really... suspicious. Makes a person wonder if govt control is really about taking care of people, or about something else, maybe. Like a lot of politicians and CEOs being millionaires. And possibly worse- like state control?... We know what state control is in other countries, but would we recognize it in our own?

I keep hearing there are real cures for cancer, too, that don't involve dangerous 'treatment' that costs you as much health as it purports to give back.

One more thing, for you prostate guys, bless your hearts. Have you ever heard of any other organ in your body needing to go through 12 core samples at a time through the most infectious area of your body in a nonsterile office setting? Imagine 12 holes punched into that little bitty organ, how bloody and shredded that would look from the organ's point of view. Imagine if someone did that to any other organ in your body under those circumstances under the guise of 'looking for cancer'. When you really dig, you find out the real numbers in the graphs, percentages of genuine lives saved vs % of men with no cancer at all who wind up incontinent and with ED for life as side effects. Add sepsis to that and I think any of you would be stupid crazy going through that. If a woman had to go through something like that detecting breast cancer, there would be a worldwide uprising, but men keep docilely letting the medical industry rudely shove bad science up their butts.

The word 'science' has been destroyed for me by consumerized medicine. I don't believe in 'medicine' any more. I believe many doctors genuinely care and want to help their patients, but I'm seeing a number of doctors rising up around the world pushing back against a variety of codified treatment options that squeeze out real healing. Do no harm, right? Well, the entire industry does plenty of harm.

Science is showing me that I had two different doctors letting me fall through the cracks. It's time we all started paying more attention to who needs to be taking responsibility for our health care. Basically, we the people.

I'm one of the lucky ones lately. I finally have a good doctor measuring the root cause of inflammation in my body as opposed to simply tossing prescriptions at me helping me to live indefinitely with it.

When you find out, after 30 years of that level of 'health care', that all of your suffering through the years could have been prevented, it's on you to not keep going back to that and allowing them to be the boss or your health. YOU are the boss of your body. If you want to learn how to heal and feel better and get well, start researching. Really look. Spend time reading, taking notes, comparing informations, and coming to your own conclusions. They've been keeping us helpless and blind, and although they turn it into 'courageous victories', they also put people through demonstrably outrageous amounts of suffering. When you find out the cancer cure patents being blocked by big pharma contain far less suffering, will you be outraged?

I'm obviously having that looking back moment where I can see now how controlled I was to the point of nearly complete immobility and sanctioned addictions for many years. A few years of physical therapy and a year of vitamin D have done so much for me that decades of medical compliance never did.

I don't know how else to shake other people awake, so I'm telling you my story. If you feel like life is hopeless, I have years of blog posts demonstrating that a person can go from the darkest depressing life of pain and misery to not only hope, but to real healing. I'm not selling anything, I'm not pushing anyone else's products, I have no agenda other than we all really need to wake up and realize what they are doing to us as a mass population. We are so easily controlled through pain and fear, and that part they really do have down to a science. If science seems questionable and lame, it's because the real science is about keeping us complacent and controlled. One could (and should!) ask why and keep digging.

Maybe this is part of a really good answer.