spaz

it wasn't really my ears

2022-10-17T09:47:00.003-05:00

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.

ears-not-ears, that is the question

2022-04-13T16:55:00.000-05:00

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.

"they extinguish the spirit within you"

2021-11-05T19:30:00.002-05:00

“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.

thyroid, prostate, science...

2021-09-15T11:31:00.004-05:00

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.

https://channelstore.roku.com/details/aa3de745ff08e379788fbc59ad31574a/plandemic-indoctornation

spaz map

2021-09-01T13:36:00.003-05:00

Originally published at Basically Clueless.

I learned during my sociology degree that we 'brain map' our social constructs so that we can retain context on all our relationships, personal, social, work, school, etc.
Part of my #brainfail through my life was being unable to retain this ability to remember my own timeline, much less map how I fit in with everyone in a continuous stream of change over time.
I've been working on this for decades, and I think I'm finding a way to piece it together in a working map. In my mind I'm constructing this map in a 4D kind of way, perhaps 5D, since it covers changes over time. In my mind it kind of looks like a cosmic event map in 3D but with an added timeline so that the map model can change by rolling forward or backward in time.
I didn't know most of my life that I'm a fragmented person. They used to call it multiple personality, now it's dissociate disorders of varying degrees. As I've been waking up to my 'selves' and learning to share info among my fragments, as opposed to feeling locked out of my own long and short term memories and confused and disoriented, I've been very slowly piecing together the points of impact or breakage, as it were. It wasn't at all clear, especially since most of the fragments are independent enough to take and absorb life hits on their own, but over time I've been using a free association technique that allows me to 'randomly' tiptoe through my head, and learning to stop and let my 'head' talk back to me. That's more simplistic than it really is. Learning to recognize reality sifting down through simulated materials aka the way we process and retain our memories and then tell our stories back to ourselves has been a meticulous and very sketchy process taking several years, as evidenced throughout my blog fleet.
Part of the challenge has been more than one of us learning to do this and leave trails for each other, sort of like leaving notes or tag tabs for other people in a big project. Imagine working on a very large project over a very long time and never seeing the other people coming and going, and every time you come back to the project, things have changed and you either get a shift change log with not the greatest notes or nothing at all, and you try to pick up where they left off, which requires quite a lot of redundancy. That is what trying to piece together a bigger picture of a fragmented person is like.
For the most part, I'm very stable nowadays, rarely switching back and forth. And I can tell nowadays when I do because of the headaches. When I get sharp stabby headaches out of the blue that dissipate just as quickly, sometimes with a sick dizzy feeling that also comes and goes just as rapidly, I am dealing 'on the fly'. For years I would fret that those feelings meant something horrible in my body, like illness or stroke or whatever, but now I know it's simply a high stress moment being taken over by another part of me that can better handle a situation. Sometimes I'm cognitive of sharing space and sometimes I'm not. Most times I retain most of those memories, but they can get a little blurry. It's like I'm there but sitting on the sideline taking a break.
"I" is not always the same person. I figured out awhile back that we take turns writing in blogs, sometimes paragraph to paragraph and even sentence to sentence. Even when I had no clue this was going on, we were all chipping in together. Writing seems to be the way I talk to myself, or share my head with me. Many times I've gone back through blogs and read things I don't remember writing, or sections that seem surprisingly 'other person' chiming in. Any of you who've read through a lot of the old stuff probably saw sudden continuity breaks and just thought that was poor writing, lol. Well, I'm not a poor writer. We just don't all agree on when to stop talking, apparently.
So this summer I have figured out more of the free associating feedback, and it feels like the others are becoming a little more open to being stalked 😂, so we all seem to be building a common map together that helps show us where we all fit with each other.
In my mind, I was explaining to a fictional figure in an ongoing alt life reality (some might call it a dreamscape or storyboard) that a few key mes were like epicenters during fragment events, and they became their own color families. I think that explains the pinkybluejacky thing, and why Jacky is stuck on which color of blue is the best, azure, cyan, royal, or sky. Lately we've noticed that soft mint and rustic orange together seem to strongly evoke memory fragments, as well, so however an event cracked that current local landscape at the time, they evidently got color mapped. I realized a couple of decades ago I am synesthete and seem to map many things in my life around hex charts, including blogs, and that each color family strongly attracts or repels other parts of me. We seem to be socially grouped. The blue/pink treaty involving Jacky and Pinky happened a long time before I became cognitively aware of the significance, and now I recognize it as a shaky alliance between the two strongest personalities who fought for control most of my life and finally settled into sharing enough space to stabilize. This settling happened with my second marriage to a very patient and forgiving man who doesn't make a big deal out of my weirdness (this is where men emotionally ignoring women can come in really handy), and now nearly 3 decades into this marriage, I'm finally getting a bigger picture mapped out.
The actual traumas are incidental and fantastically boring to me by now, plus they've been written out all over my blogs, so I'm not going to reiterate anything. I do recognize that Janika is an epicenter that happened in the '80s, and that was so rough that I lost being able to map a continuous timeline for 11 years. I think all the really significant big stuff happened long before that last one, most of them during my childhood at various points over various very overwhelming events, but the key is realizing that two of the stronger personalities umbrella'd over and took control of successive fragment events. Jacky seems to be a parent figure for a few 'kids', and Pinky is the mom as recognized by other 'kids'. Claudia and Lydia respond and defer to Pinky making decisions and handling things, and since Pinky was universally recognized in my head as the interface with real world for several years, it was probably natural to become cognizant of those fragments sooner than others. Janika seems to be very rogue and is responsible for some of the 11 year messcapades, along with Yablo. From what I can tell, Yablo is a latent mostly nonverbal 'Loki' figure nearly completely disconnected from anything tangibly emotional to the rest, and probably saved our lives a few times during Janika's plunges into various miscreant behaviors. Not sure, but I think Yablo is the one who wakes up during surgeries and drove home during the heavy drinking. Yablo shares space easily enough, but without the emotional connections, the contexts are always sketchy. Yablo was around for a very long time before getting named by one of my sisters. Janika was named by my child when she was 4 years old.
Jacky and Pinky go way back to very early childhood with their own continuous timelines of memories. Janika doesn't have memories before the 80s, making me think that epicenter was from my friend being murdered and then the immediate dissociation for years. Personally, I think Yablo was already around and probably helped stabilize Janika from going over addiction cliffs, but just barely, certainly wasn't out of worry or caring, more like having a friend to pal around with. When I look into those two I can kind of see the switching off. Janika never passed out, ever. It was like Yablo could bypass all that and take over and drive. Those two easily shared space and have common memory trails, so as I've been learning to free associate back into my past, I've been able to pick up on that buddy system between a couple of ne'er-do-wells. At the root of that, Yablo is responsive to Jacky. Pinky and Yablo don't ever seem to cross streams, which may be the bigger cause for memory holes in Pinky than anything. Pinky is emotional, Yablo is simply unattached emotionally, so it's like they are mutually exclusive. Yablo also doesn't fight for dominance or control. Jacky, on the other hand, is very dominating and fought with Pinky for years over control, even though Jacky is flat effect. Jacky may be "the cat that walks by himself" (Kipling), but Jacky does care deeply that things not go off the rails and considers Pinky to be weak when situations get stressful. The only thing Pinky remains strongest over Jacky with is being the mom. Jacky isn't really mom material and probably lets things slide more than they should. Since my first husband and that whole mess came hot on the heels of my friend's murder, whoever was occupying and controlling head space at the time was clearly not being supported by Jacky until the epic control fight that saved my child from that marriage. I'm still not able to access that very well, even though memories come through clearly enough to know what was going on, so I can't help wondering if the 'kids' were muddling through that on their own with a dash of Pinky here and there. I just know my head was such a mess that I couldn't logically think through anything. That was before Janika started drinking, so it wasn't alcohol. It was more like still being in shock, nothing felt that real to me except having a baby. That was real. And the fear was very real once we realized we were very much in danger and that my kid was being so abused.
I can see how and why some people can't see reality around them when they are in bad situations. If they are already fragmented from abuses, the parts of them that recognize it just shut down out of some kind of weird psychological protection. It's hard to wake that up and then do something real about it, especially when danger gets overwhelming.
Anyway, my map looks like an undercurrent of babyhood that one of me calls Sasha for lack of better information, followed closely by a couple of epicenters that cracked Pinky and Jacky (and possibly others) into existence, and then a short few years later Lydia and possibly another, and then another few short years came Claudia. The ages look a bit like baby/toddler, 3 years old, 7 years old, and 10-11 years old. I'm only guessing, they just feel like that. Lydia is the one who started having the witch nightmares, calls them witch-cats, and she never talks out loud when she pops out, but she sees everything. Claudia is the crabby fighter personality who remembers how to kill things, rambunctious and argumentative. Not sure who the 'kid with the bike' is yet.
I have clear memories that go back to babyhood. The memories that we all share before fragmentation events are the strongest. I've been learning to go back in time to before those events occurred, finding the shared memories, and then sorting out the fractures as I slowly move forward. At each fracture event a new part of map emerges, and events with strong epicenters seem to reorganize the continuities into new behavior group patterns. Figuring out how each of my fragments relates to all the others has been a real puzzle, because over time they change, just like relationships do with real people around us.
One thing I've been learning is that just because a personality seems to be latent for a long time doesn't mean they are inactive. They are literally part of a real time brain, a whole, and it doesn't just shut off like a light switch. Even latent personalities can hear, see, filter, and incorporate information into themselves even if they are not sharing cognizant space with other fragments. They may be a little lost in time and confused in place when they do present, but they aren't stopped and started again like a dvd player. Each fragment is part of a real person, and it's rough feeling left out of the loop and suddenly having to deal in spite of a big gap of continuity missing, but that personality being out and active might be a crucial development in dealing with something. Whether we are cognizant of each other or not, each fragment is important to the overall stabilization of the whole person.
Part of mapping some of the fragments into relationships has depended heavily on our willingness to share feelings without self recrimination and even self harm. Jacky and Pinky intensely disliked each other for many years, to the point of sabotaging each other. If you have a disorder wherein you are self sabotaging, you might want to look into a duality playing out that is seeking common ground. You may not be fragmented as such, but you may need some kind of reconciliation therapy. It's ok to forgive yourself. That was a very important part of my own processing. Parts of me are OCD level perfectionists, other parts of me are life fail depressionists. That battle between two conflicting personalities only made things worse. Learning to share space with agreements not to inflict insulting judgements and guilts on each other was a huge step, and reaching a place of understanding that the root of that bitter fight all along was Jacky loves Pinky so much that Jacky would force Pinky into submission out of harm's way so Pinky wouldn't cry was utterly heartbreaking. That was a real thing, and reaching that place broke down a lot of barriers.

thoughts about George in his broken brain in Sublime (2007)

2021-05-27T08:26:00.003-05:00

This is a repost from my PinkFeldspar blog. It's originally part of a movie review, but so much of this section is a reflection on what it's like living through what I call 'brain fail' and 'glitchy brain' that I think it needs to go on spaz blog where other medical posts are collected. If you get distracted and want to see more about this movie in general, you can find it among my #TomCavanaghWatch posts.

This is super random like a writing prompt and not intended to be part of the review, and is especially super spoilery if you haven't seen the movie yet, so go watch it first before you wander back.

I've blogged before about movies / TV shows and characters being how we emotionally connect into stories that we personalize while we deal with or process our own life journeys. The movie Sublime that I have reviewed recently has been one of those uncanny connects for me.

I spent years publicly blogging my own 'mess' of 'glitchy brain' fail that began, in part, in 2004 with what my doctors assumed to be a viral infection on top of years of autoimmune challenges. That is one of the layers I've been processing through. When this happens to an already fractured mind from childhood trauma and a lifetime of PTSD, I'm here to say it can be pretty devastating but survivable.

I'll jump right in. When George asks to be taken on a tour of the broken East Ward presumably under construction, he doesn't realize he's surveying his own brain fail. I've had numerous dreams like this over several years, it really does work like this when you are trying to figure out the problems that you can't see and your brain starts helping you consciously assess internal damage from the point of view of an entity that isn't human like you are, because it's existence is lived as an organ that processes data. Oddly, brains can't just type us notes, so they 'simulate' scenarios. If we break it on down, a brain as an organized entity is itself made up of numerous selves that continually work on construction and vital systems management protocols, like securing and shipping energy and oxygen. When shipping and/or nutrients are interrupted, the entire system can plunge into massive fail.

A brain is a living thing that wants to work properly. Like a machine, it runs automatically without our cognition, but like an AI, it connects to us and talks to us in dreamscapes, riddles, visuals, experiences. Our brains can interact with us as a separate entity from us, yet still be one with us. Consciousness, arguably, is not completely dependent on the brain, although the brain is how our consciousness is able to interact in this world reality we see around us with other people in it.

During this tour of the East Ward, George chances upon a room full of files, a sort of archive of information. It is organized but the version is outdated, a hard copy backup of a digital system. He finds his own file with his name on it, and in the very thick file he sees hard copy of many organ and tissue assessments. This is literally what the brain does, in one sense. Our brains know everything conceivable about what goes on in our bodies, that is their job. When there is brain disconnect, or fail, that information can stop being updated, or even be lost, and the brain automatically fills it back in with real time information gathered from what we'd think of as diagnostics. I went through this when I went through central nerve fail and memory glitching. I could feel this happening. Sometimes it was painful, most of it was maddening from a conscious aspect. I didn't know what was happening, but over time, with very patient inner communication, I was able to consciously piece together my own archive of thoughts and reflections about what I was experiencing as my brain was working on healing.

Let's talk movie clues.

When George is arguing with the care team (in his mind, since the IV bag fluid is milky white), the date on the file he found, according to the medical lawyer (a brain perspective trying to share information to his consciousness), was Feb. 29, 1947. That was not a leap year. (That had also changed from what he saw originally.) But there is also a name connected to that file that George thought was his, that actually of George Spelvin, if I heard that correctly (I could be wrong, I suck at transcription). If this is the case, then the pseudonym and nondate are key clues, along with the unidentified bandaged man that George thought he saw murdered, are really himself as an empty slot. The file contents are his own brain content being interpreted, the file identification shifts between the time he discovers it and later argues with the medical lawyer. His 'evidence' is slippery, and his brain is filling in the lawyer's words with substitute answers. Is his brain updating in progress, indicating more loss? Or is this like a dreamscape where hope plays tricks and information is slippery anyway? In any case, his brain itself is aware of loss, but communicating that into his consciousness isn't easy. George is in full fight or flight mode by the time he seizes out during his brain slamming another fail simulation at him, his necrotic leg. That scene is a giveaway since necrosis to that extent takes time. The brain is screaming that it cannot find his leg, it cannot connect and assess, but in George's consciousness (in his vegetative state), it becomes interpreted as a diseased and then missing leg.

The mystery of problem solving inside a broken brain can send a person hurtling around an emotional rollercoaster. It's hard. I was very struck by the opening theme by Bird York, Have No Fear. It's nearly impossible not to have fear when your nervous system is part of the breakage. It's like living inside downed wires and massive grid damage when you can't move around correctly or easily speak what you mean. It's like feeling trapped in a maze of confusion, so much fail going on and no way to share the fear in a way that nets back badly needed emotional support. And sometimes that support is so misunderstood in all the confusion that one can only recoil back into solitude. I have thankfully never experienced a vegetative state, but at one point I made the decision to wrap my mind around preparing for the what ifs of a complete communication sever. The intuitive response is to fight, that can translate into combative patient and poor treatment, and I chose to bend my will toward remaining calm, accepting, and pleasant, trusting what I could not trust. That is very hard. (The key to accomplishing this is to, as George found, wrestle one's demons, face the truths inside that we refused to see, and acknowledge our life fail of allowing bad things to happen, very much like a life review.)

Add to all the confusing emotional rollercoaster the jumble of real life still coming at you, the torments and persecutions of judgments from people all around you, whether those are perceived correctly or not. George reliving memories of his birthday party, assuming he was even remembering correctly, was part of the big puzzle, many pieces that needed reassembling before he could cognitively understand how to take action months after a medical accident. To recognize that he had this power to make a decision was a giant lightbulb after so much misery.

One thing this kind of life challenge wakes you up to is information. Information in general from everywhere, everywhen. Time has no meaning when one is compiling information trying to restructure. Sorting things like timestamps comes later. I personally developed an obsession with timestamps because I lost my sense of time. What I discovered was compiled information.

Using twitter as an example, I am unable to keep up with real time linear interaction flow. For a long time I couldn't keep users straight, much less their personal information that made them unique. I learned to use the twitter search bar with keywords and hashtags to pull up a time order for users and particular thoughts, and I was able to remember the timestamps for some reason. I noticed that a person might say 12 different times over 4 years how terribly sick they were, and then at other times say they never get sick. In their linear experience, they might not remember, while they are in a vital healthy phase, regularly picking up seasonal colds that last a week. I could easily pull up their histories and see that while we are in linear experience mode, we are in the moment and don't pull up all the files. Once we step out of linear experience mode, we can see all the files more easily. Well, I crashed out of linear experience mode early in life when I started dissociating, and parts of me are 'research hounds', obsessed with finding and knowing information for various reasons. Add a 'brain crash' to that and I felt like I simply dropped out of humanity synch with world time. I used social medias like twitter to see the rhythm and try to slide back into it (like jumping into an ongoing jumprope game, perhaps). I'm still not very good at that and eventually let go of trying to keep up in real time. I live in my own real time now.

We cannot explore all the files this way until we step back from in the moment reacting. George tries to react in the movie, but he's lost his moment and can't find the way back to that moment. He's stuck on a moment unaware that months of time have been passing, trying to problem solve what went wrong with very minimal access to information. He can see the broken parts, and he can see the diagnostics, but he can't see how he himself fits into that.

What he didn't expect to see were the jagged details of collected memories exposed in the brokenness, his demons, if you will. Evidently, George was very aware of the political divergence going on around the world that supported his real life success. He was aware of the human abuses going on that supported capital gains in his world. He chose not to 'see' them while he was in the moment. He believed he deserved his success because he had earned it himself. Likewise, he had chosen not to really 'see' or be cognizant of how his wife was feeling. The simulations are valid communications about his fears and feelings and situations, but since he cannot translate them logically, they create panic. His fear grips him and then all he can think about is feeling trapped and wanting to escape.

I can say that level of vividness is very real with 'broken brain' stuff. It's catastrophic to realize we are stuffed full of information that we don't even know we have. All our brains are absorbing all the things all day long. Good things, bad things, all the things. We might consciously choose to focus on our own interests as the days go by, but that doesn't mean all this other information collecting going on constantly is being deleted as overage. It's all still there, and it's all important. Why are things we ignore important? Good question, especially since humans seem to universally experience compelling life review phenomena.

When I see George really noticing these political atrocities among his jagged broken East Ward, I see him realizing the reality of what hadn't been real to him, real people, real lives affected in the kind of life he had been constructing for himself. Whether they were actually fallout from his own financial decision making is probably beside the point, because who could know that. In general, however, there was a connection, he knew it was all connected, and he chose in his linear in the moment life to not see those connections. He turned away from taking responsibility. That this is affecting him so much in the dreamscape simulations is a very strong hint that he went out of his way to stifle these feelings in his everyday life. He stayed busy making money, probably nightcapping his way through his marriage after long days of wheeling and dealing. I can't judge since I don't know, but it's looking like the rude awakening after the brain fail was a seething pile of guilt he managed to lock away for years.

How one heals from a broken brain, assuming one has that option (like me), can involve a very deep dive into cleaning out one's soul. Pulling everything out of the closets of the mind, sorting through it all, repacking and organizing- this is all inherently part of healing when a mind scatters into pieces after the structure crumbles. Restructuring is rebuilding. I think at one point I compared it to reassembling a building piece by piece out of the original materials without a blueprint after it had been blown apart. That was so many years ago I can't find which blog I wrote that on.

:edit: Found it. "Like someone reconstructing an earthquake smashed mansion brick by broken brick without a plan, I am reconstructing my brain today. Like someone who lived in that mansion, I know I lived in my brain, and I know it's all still here. So I glitched again, so what. It's not gone. I just have to go over all the little connections and see what needs to be plugged back in." Dec. 27, 2012

Having our consciousness interrupted from illness or injury is a terrible thing. I compared losing my intellectual capability to beautiful people losing their good looks to some calamity, which we all know can be very devastating. I became very dumb and spent years crawling back from that. I consciously could not logically piece together my own history. I've had to wait while my brain heals bit by slow bit.

In George's case, there was no more healing. Nothing more could be done to cross back into the 'real' world of linear in the moment with his family. He had healed just enough to become minimally aware that he had a choice whether to stay or leave. Whether he was truly cognitive of his family around him is unclear, and as messed up as his awareness was anyway, we'd still only be guessing at what he truly was aware of at the end. However, he did seem, inside his head, to be aware enough of himself to reject remaining in that state. Even on life support he managed to 'escape'. There would be no way to measure if he truly did that or if his brain just stopped working, since he was considered to be effectively medically unable to ever respond again.

I could be like Fangoria and talk about Sublime's "health scare plan", but I'm not going there. I do think it's valid, though. Click to go check out issue 261 published on 9-28-19.

silence condones, part 1

2020-10-30T06:10:00.004-05:00

This is a very long post, but it's a huge truth reveal in several parts. This is not the first time I've written about these things, which can be corroborated with other timestamps elsewhere, so if you see this published anywhere else without my name on it, it's not with my permission.

Since so much is coming to light with underground anons and odd news items starting to break the surface in mainstream medias about how prolific sexual abuse is across politics and entertainment, which seems far away to many of us and therefore not really 'real', I've been thinking about bringing the focus closer to home in the way of personal experiences.

This is a mental health issue. For the nation, for every state, for every city and town, for nearly every household. Definitely for the world. The statistic when I was working on my masters degree in college was three of every 4 people are sexually abused by the time they reach adulthood.

I was personally not traumatized sexually as a child (that I know of or remember, backed up by how ridiculously naive I was about sex right up to adulthood), but I'm surrounded by people in my own household who were. What I'm sharing here is an example of how closely this touches us all, how blind we can be to this being all around us. This is important to grasp because, as a nation hanging on to the 'news', we might find ourselves feeling pretty rattled over the next 6 months as dark information comes to light. This is nothing to be ashamed of. We have all been trained en masse to cover up secrets. Society protects its own, and unfortunately, high ranking society isn't immune from some very dark secrets.

Part 1

I was a virgin when I married a pedophile. I had no idea what that even was. I was in a bad place emotionally after my best friend was murdered and I managed to move forward in very narrow tunnel vision. I was not aware during my 4 years of marriage to this pedo that his nieces and nephews had been accosted, that incest was rampant in that family. There were hints and the usual red flags that never quite came out saying THIS HAPPENED, and I was very normal looking past those because I didn't understand them due to my lack of experience.

My first hint was an old doctor, who was doing my first ever pelvic exam, literally pulling my husband into the exam room while I was still in stirrups to show him I was still a virgin several months into our marriage. I had been feeling pretty sick and apparently was riddled with STDs. In spite of this obvious evidence, that old doctor practically spat me out the door insinuating I was the bad guy, and I went home crying. My husband was completely off the hook while I was completely lost in what just happened.

I gave birth at a local hospital when I was 21. A patient being wheeled down the hallway, who apparently knew my husband, lost his temper and nearly jumped out of his wheelchair threatening to beat him up, alleging that it wasn't cool to knock up 15 year olds. I confirmed I was 21 and married to him. I was too naive to realize back then what that could possibly mean about my husband's reputation. He was a handful of years older than me, and for some reason I've always looked much younger than I really am. I guess I made an unwitting cover for him...

When our kiddo was around maybe 8 months old, I often found her hiding in odd places being very quiet and still, like by the water heater. Sometimes I wondered how she even got in there. About that time, several other things happened. I got my first taste of spouse abuse to the point of permanently damaging a nerve near my left rotor cuff. (Much later, years of physical therapy finally gave me relief from unremitting pain my entire adult life.) Our daughter also went through a spell of severe constipation. One evening after the initial attack on my arm, during my dissociating pain shock, I heard her screaming in the bedroom and wasn't able to respond. I knew my husband was back there and would take care of her so I didn't worry. It never entered my mind that anyone would purposely make a child cry like that. A couple of weeks later I stumbled across a locked trunk he'd always dismissed as junk from his deceased father, picked the lock, and discovered a wealth of the nastiest porn like nothing you ever saw on retail shelves anywhere, including kids. He was so angry with me when he found me looking through it that I became afraid of him. Within another week I had moved us back in with my parents. I was too rattled to tell anyone.

As my husband started establishing with the county health department that he was unable to work (the scheduled visits all returned negative confirmations of his list of problems, which were obviously psychotically based on TV shows and other people's stories of having a metal plate in his head, a rod in his spine, plastic kneecaps, etc.), I got work and we moved back out again. He watched our kiddo while I walked down the street to a drive-through fast food franchise. A couple of months went by before I found out he was driving all over the county with our 2 year old and a friend of his while I was at work. She confirmed years later that he'd been trafficking her to his brothers and other acquaintances, which explains the weird strangers walking up to my daughter and I during grocery shopping and going on and on about what a doll she was and they'd like to take her home. I didn't have a clue what they were talking about, but it felt over the top and creepy.

During this time, the longer we were away from my parents, my husband became more and more hostile to me at home, he and his friend humiliating me whenever I was off work, kicking my butt with their boots and laughing, which hurt. I was afraid to say much because he always had a black powder pistol on him, within reach, or beneath his pillow at night. He took to watching out the window on nights he couldn't sleep, gun in hand like he was waiting to be raided, and maybe he was. He had also started bringing home other people's guns to take apart and blue, hanging them from the shower rod, so I had to skip showers before work. Eventually a coworker approached me about him stealing their gun and I simply said go talk to him, not my stuff.

As our marriage weirdly transitioned into something out of a TV show, our little girl started stumbling a lot. I started paying more attention, worried that she might have a developmental issue, and caught him tripping her, pushing her, even slamming her fingertips in a door. When he thought I wasn't looking he'd giggle or stomp away mad each time. I grew more fearful because his behavior was so strange. One day I walked in from work and he was peacefully sitting on the couch watching TV while our little girl screamed in the bedroom. He seemed completely unphased. I went back and found her turning colors from screaming so hard, her diaper was soaked through, and when I pulled it open I was extremely shocked to find a long pubic hair in her diaper and she looked a little swollen. With a terrified rush, I realized I had confirmation of everything wrong and quickly changed her before he could see that I saw, because I knew in that moment he was not above killing me. He had accidentally killed before during a hunting trip, according to one of his crazy stories everyone blew off. No one ever really believed that, in spite of his expert marksmanship and obsession with guns. I quickly arranged a babysitter while I was at work and demanded the one car we had, saying I'd lose my job if I were late walking again. I made sure only I could access her and pick her up, all without really confronting him, using excuses and acting dumb. I knew we were both in danger.

I wasn't sure what else to do so I went to a neighbor for help, the wife of an officer in our church. She suggested I stop watching so much TV. I was so crushed that I went home dying inside, not daring to cry openly where my husband could see. I tried to hold everything together for about a month until one of my husband's sisters showed up at the door demanding to know if I was a whore or just stupid, and she was really angry. I knew in that split second I had an ally, even though we weren't friends at all, and told her I guess I'm stupid and I don't know who to trust. She sat with me at a clinic to check my little girl out for abuse, but by then she was healed up and no one was able to confirm. I look back and wonder if she showed up because, with my child being more protected out of my husband's reach while I was at work, maybe her children were more at risk from their uncle.

One of my big unmistakable clues that the danger was rising was when he walked in one night, held a stolen rifle to my head out of the blue without saying anything, and didn't move at all until I rolled my eyes and turned around and ignored him. He held that position about ten seconds longer and then lowered the rifle and stomped away down the hallway without saying a word. My heart was thumping really hard but I didn't cry or act freaked out or anything from that moment onward through the rest of our marriage. I knew his crazy head meant it and somehow I called his bluff. If I had reacted at all, I have no doubt I would have died that day. I think he was really pissed because he hadn't had access to our daughter.

After that, I knew I needed outside help as soon as possible. I went to the health department and asked for a referal to a specialist for my child under the guise of developmental issues. I was still so naive that I didn't understand when, instead, they suddenly confronted me about the faint bruises that were nearly healed on her arms actually being cigarette burns (I'd grown up in a nonsmoking household and had no idea cigarette burns could look like that and argued that my husband just gripped her too tightly) and they said they were going to take her away immediately. I negotiated hard and fast, saying I'd have my husband out of the house within a week. I was so fortunate they were slack enough to allow me to leave the building with her. I quit my job that very day and asked for help from a lawyer who went to my church. He helped me map out a legal plan to get my husband out of our lives without rocking the danger boat. First he helped me file for legal separation on the spot, the rest would be waiting a few months for that to pass through court uncontested, and then hopefully proceed to divorce without visitation, and a big part of that sliding through successfully would hinge on not pursuing child support. It would be tricky, a long game, but he defined the goals and coached me how to behave to reach those goals.

After that visit with the lawyer (quite a lot in one day!) I picked my daughter up from daycare for the last time, telling them I quit my job, then went home the rest of the day. I was so glad my husband wasn't home when I first got there so I could set up a play area and get ready to face him. He walked in about an hour later after his friend dropped him off and was very surprised to find my daughter and I both home instead of at work and daycare. I explained to him that I had taken our daughter to the health department for stumbling so much and they were going to take her away on the spot, and here's where being brave gets really hard, and since I've lived it, I believe it when other people say how hard it is to get out of bad situations. I had to lie straight faced and act convincingly naive to a man who was already abusing me and had showed ample evidence he might hurt me very badly or even kill me. I babbled on how I couldn't understand what they were talking about, but I said ok and quit work and said I'd be staying home with our daughter myself and they'd come check on us in a few days, and within a few minutes he was packing, saying he needed a break. I never found out if he thought he might be caught for child rape, but I played stupid and nice and signed the car title over and told him come back when he got his stuff figured out. Once he was out of the house, I started packing myself and moved back with my parents. After that, it was a game of legally baiting him to out himself as a psycho while he signed away custody. He wanted visitation, and on the advice of my lawyer I insisted on a psychological assessment with the condition that he must sign a release for me to visit with the psychologist afterward before he could see her.

While I waited for that to roll out, I did take kiddo to see her daddy one time after he got a place in town, mostly so I could confirm how he was doing. He took me on a tour of the backyard and the house while she played, and didn't seem at all phased to walk me right by an unmade bed with a big pool of not quite dried blood across the sheets. There was no way that was someone's period. I nearly had a panic attack at how blatant that was, how unaware he seemed to be about that affecting anyone. I told him he got lucky, it was a nice house, and he seemed proud of himself. Once we got back to the livingroom with kiddo, he almost started slavering, insisting I go shopping and he could babysit. I laughed and said no, I'm not shopping today, but I brought you the rest of your things, which he seemed happy to see (they were really more of my own things, including his favorite record albums), but then started pressuring again for me to leave for awhile. I rattled on while I ushered our daughter out the door, down the little lane, through the gate, and by the time we made it into the car he was hostile. I don't know how he refrained from putting hands on me, maybe because we were so visible while we were outside of his house. I just kept playing really stupid and got away.

He complied with the request to talk to a doctor at a mental health center, and I was able to visit with that doctor in private another day. From all accounts, that doctor believed everything my husband said, but I had come prepared. I expected that because everyone believed him about everything except when it was something 'ridiculous' like accidentally killing someone, which he didn't bring up with that doctor. Everyone really believed he had suffered through terrible things and horrible surgeries and had a metal plate in his head, a rod in his spine, and plastic kneecaps, including this doctor. The doctor even felt sorry for him, telling me it was a pity that he was unable to work. He was very surprised when I pulled a stack of papers out of my purse, and I started asking questions. Did he tell you when we got married? Yes, he did, and the doctor read the date from his meticulous notes. I laid our marriage certificate on the desk so he could see the date was wrong. Did he tell you our daughter's birthday? Yes, he did... I laid the birth certificate down. I asked question after question and laid down paper after paper. Every single fact my husband had told that doctor was wrong. I made sure that doctor became aware of the health department referral findings about there being nothing physically wrong with him. And when I reached the end of that stack of papers, I put them all back into my purse and said Thank you, that is all I needed to know, and smiled, standing up to leave. The doctor had looked more and more worried through the visit and suddenly seemed very anxious, asking Can you get him back here? He really did look worried, and I hadn't even told him about the guns. And I said, Sorry, I really can't, and I walked out. This is proof that you cannot talk to someone during assessment and know the truth about them, no matter how many professional years a person might have under their belt. This is also proof that my family and neighbors believing my husband's words over my own only shows how naive and gullible people everywhere really are in the presence of a mentally ill person. Society as a whole, in my opinion, is far too trusting. We should all be more aware of our neighbors than saying they seemed so nice and you can't believe they did something that bad when the police come for them.

So, obviously, I was married to a quackadoodle who compulsively made things up continually, confirmed by a number of doctors, and after that I screamed at him that he would never see his daughter again, and he hasn't. All the same, I had to remain very stringent for years watching out for possible kidnap, especially after a niece of his warned me in a phone call that he'd found her school, and she told me a man was watching her on the playground.

None of that helped anyone else believe me about the sexual abuse. Even my own mother called me a liar. So that's a real thing, unless people have literally been through something traumatic or know someone who has, they cannot process it as 'real'. I was alone for years unable to talk to anyone, and ostracized by my church as a divorced woman.

Anyone can be a bad guy and you'd never know it. If someone comes to you asking for help, don't blow them off like they're lying and making up fictions. Never trust anyone with your kids no matter how nice you might think they are, because you. don't. know.

Part 2

You know what, I'm going to put parts 2 and 3 in a follow up post.

A person I know on twitter posts these numbers every single day. I think these are U.S. numbers.

You matter. 24/7 Suicide 800-273-8255 Sexual Assault 800-656-4673 Domestic Violence 800-799-7233 Child Abuse 800-252-2873 Drugs/Alcohol 800-662-4357 Veterans Text 838255 for VA help Trans 877-565-8860 TTY 800-799-4889 Crisis Text START to 741741 for trained volunteers

I also made these links one year on a blog post. They should click out.

If you need someone to talk to right now- *click*
international suicide hotlines
national domestic violence hotline (U.S.)
veterans crisis hotline
24 hour crisis hotline (depression)

If you feel alone and trapped, find ways to let someone know you need help.

Article- Can a black dot on a victim's hand help tackle domestic violence?

that time I spilled (almost) everything about my sex life

2020-09-25T08:51:00.004-05:00

Got another one of those random calls from yet another publishing company today, didn't bother picking up, but I looked them up. That snip clicks out if you need to see the screenshots. 😂

I think at this point I've shared so much stuff for free that I may as well share the rest for free, maybe slap a book together another year (or ten lmao).

Years ago, when I first started blogging publicly as an aspienado, I wrote aspie lovin' (recopied here for mobile viewing), which got way more hits than it should have. I mean way more. Back then, xanga had internal tracking available and I was able to see it. I'm not going to copy/paste it here, but it's a cute story if you want to check it out, how crazy mixed up I get with social interaction in a relationship and why the word 'cupcake' still cracks me up.

A few months later I wrote self stim (recopied here for mobile and later shared on Autisable). I'm not going to recopy that here, either. In the comments section in that middle link in the previous sentence, someone commented that they thought they were the only person in the world to have this problem, and I left a lengthy reply with a history of how I 'came out' about my sexuality with link backs, so if you are one of those weirdo full blown synesthetes on autism spectrum and other complications, hi, me too.

So to quickly recap, I was born a mess and it may have affected my brain a little bit but not so's you'd notice that much on an MRI or cognitive testing, right? Except for empty sella and the headaches I've had all my life, everything problematic I've ever gone through growing up boiled down to either me being 'different' (not a compliment back then), or being a weirdo. On the other end of life now, I have some solid research backing up some of the things that have sexually haunted me my entire life. I can't definitively say what caused what, what exactly are symptoms of which thing, but I've got pretty good ideas how to sort it all out now.

So the big problem behind everything that I rarely talk about is spontaneous orgasms and persistent genital arousal disorder, which is hilarious given that I'm super asexual by nature. This is a very tangled up thing that I tried bringing up in therapy, but the push to have to define myself was so odious that I had to drop it. I'm not against defining and sharing, I'm just not that verbal all the time (thank you, autism spectrum), and when I am, I wind up talking too fast (thank you, euphoric episodes). Throw in another person processing the convo and it's really not long till we're off in crazy land arguing about what I'm really going through.

I started out born with deficits. I am socially deficit (whole cheer section in the back just shouted out at me, we all know I suck), prosopagnosia (face blindness) didn't help with building relationships at all anywhere any time in my life, autism lending to self stim (totally normal for auties as, I argue, a compulsive need for tension relief that isn't perceived as sexual by tiny children), and on top of all that, I have some weirdly brain wired synesthesia. I mix sex up with everything.

You cannot orgasm without a specific brain chemical, and once you orgasm, another brain chemical is released. The whole process usually follows a physically logical sequence of events. You fantasize, you touch someone, you enjoy them, you climax.

Not me.

As a child, all it took was someone angrily yelling and my anxiety would pop like a cork and there I'd be grinding on the floor trying to escape. I could vanish in my mind. I was gone. I didn't know for many years that I was dissociating, and that was the fastest way I was able to cope without melting down and winding up being punished for the extra chaotic noise I'd be adding to theirs. That was a coping mechanism to avoid pain that didn't make any sense to me. I didn't connect cause and consequence for years, so I didn't learn how to deal with the environment around me like I should have.

Let's throw in a monkey wrench. At some point, I must have had a back injury, who knows when or how. I skipped crawling. I dragged myself across the floor with my arms, they called it scooting. I have no idea why I didn't use my knees. When I decided I was ready to walk, I just stood up and walked. This back injury has showed up a number of times throughout my life, and each time I have been unable to walk. This is a consistent story in my life. It happened when I was a preteen, I think, all it took was a high jump off something to paralyze me in screaming pain. A chiropractor relieved the pressure on the nerve and I walked out after being carried in. That happened again three more times as an adult, with extensive physical therapy the last time it happened.

That pinched nerve area can be seen in this article. 👈 I've been through years of complications with that nerve, including such rough lower abdominal pain that I ran in to check for bladder infections sometimes monthly. I always turned out fine. I had severe groin pain off and on throughout my life, feeling like I fell hard in a bike accident or something. I never talked about it because anything involving genitals was so taboo back then, especially in our house, that I would have felt like a sinner just bringing it up.

Between tension in kindergarten and elementary school and that compressed nerve, I almost pathologically aimed for swingset poles on the playground. Just gripping my legs around them and pulling myself up to the top was nirvana in my poor brain, and I'd be so 'gone' that staff would have to come get me and pull me back into class crying in full meltdown. Any time I'm asked about excessive masturbation as a child, I feel so pissy that I can barely talk. That wasn't masturbating. That wasn't sex. That was a very small child with no coping skills desperately needing pain and stress relief. If we remember me talking about being born addicted to darvocet and having to live on donnatal (one of the ingredients is a barbituate) just to hold food down as a baby, it starts to make more sense that my brain was hard wired to overfeel everything as pain.

I'm not sure how I made it through puberty, but I severely lacked cognizance of any kind of sexual attraction all the way up through high school and beyond, which would have been very surprising if anyone knew how ridiculously my life was run by spontaneous orgasms the whole time. I saw it all around me, kids schmoozy and dopey all over each other, and I just sat there hiding continual orgasms out of the blue making it hard to think, although I amazed my gym teacher in high school when I shimmied up a rope right into the rafters one day, and jump pressed 800 pounds another day. I was exremely strong from all that private exercise. I would have died if anyone had ever found out. I wasn't shy, but I was brought up to be mortified over anything untoward, as the prudent might say. I had enough stim practice to outlast a nymphotic slut, and just no one ever knew.

I've brought this up before, but I was in my 20's before I realized I'd never visualized kissing anyone. This didn't stop me getting married, which was surreal. Never get married to escape your parents, that's dumb, and it backfired horribly. I was so inexperienced with sex that I didn't realize for years I'd married a pedophile. That's a scrapbook for the ol' burn pile, right?

I didn't consciously realize until my 30s that I was literally being sexually triggered by weather, colors, smells, architecture... It was highly embarrassing to be flipping through a home magazine in a doctor's waiting room and suddenly freeze into hiding orgasms because I saw a certain rock wall in a picture that was a certain splatter of grays and random patterns. That magazine was so spellbinding I almost brought it home. I kept sneaking peeks back at that page. Seriously? Yes, very seriously.

After I noticed that's all it took, I started keeping track of areas inside and outside of buildings that caught my attention. For some reason, certain colors and patterns in architecture (not all the same) set me off without warning, and it's so pleasurable just being in or near that building looking at the colors and patterns that an hour could slip by and I wouldn't notice. Guess what. There's an article.

What Is Sex Like for Someone with Synesthesia?

Given how long ago that was written, I'm surprised I didn't find it sooner. I guess I never thought to look it up, lol. I'm just disappointed that they confine the question to actual sex and not unrelated stimulus.

So you get a person with a pinched nerve, wonky brain wiring, social deficits, and a life fraught with tension and anxiety, and life is one long frustrating orgasm. 😂 I'm sure there are people out there who would pay good money to have this problem. And now I'm looking back on my life processing all the things I went through and realizing the impact this had on all my relationships...

Most of what I did socially for a long time was mimicry, because I don't seem to have a natural instinct for empathy. I'm clueless, so I sit there listening when people yap on about whatever, and I've been told I'm the best listener. Sadly, I started drinking heavily after I divorced the pedophile and wound up in some really stupid places with not very good people. I was still so unaware of myself socially that I didn't recognize red flags that should have been popping up, so I wound up raped a few times and nearly raped even more times. I got smart enough to see it coming and split the scene, but it took awhile to connect all that poor behavior around me to cause and consequence while I floated over it like bubbles on the tide. Because of this, I've walked through some dangerous places nearly unscathed, oblivious. I can't help but be very thankful looking back that I was so asexual that I never hooked up or bonded with anyone else who would have dragged my life down like my first husband. The only real exception was an affair I pursued more out of loneliness than anything, but the fallout blackened my heart so badly that I called quits on trying to have another boyfriend of any kind.

My second husband came from an arranged meeting and friends/coworkers pushing us to go out, and the deepest thought I had on that was surely they would at least have some sense of what would work out for us, because he was kind of like me, socially distant without much of a clue how to go forward after his own divorce. Not exactly a match made in heaven, but fast firm friends. It's been 30 years now since we first met.

We are not an average couple. At all. We rarely talk about sex, neither one of us can smoothly initiate, we're both kind of klutzy with anything in the aura of romance, and we're both too naturally honest to pretend feelings about anything. He can't lie to save his life, I always know. I think our biggest challenge, besides coming into another marriage each having a premade kid and all the ways we've been affected by extended family, is that we laugh too easily. Especially me. Everything is funny to me, because it's so cartoony. I'm sorry, but sex is hilarious. Everything about it is so dumb, like living memes or something. I cannot to this day get past the word 'frog' if it comes up in my mind for any reason whatsoever during sex without completely destroying the mood with laughing fits. After a few years of that, Scott told me it takes a brave man to continue in spite of a woman laughing in his face the entire time. Just writing that has me stifling giggles, I can't help it. He's right, he's a very brave man with superior focus.

Sooner or later, everyone on the planet experiences a glitch or problem in the 'plumbing', as it were. Some are born wonky, some develop wonky, some age wonky. Then if you have a sex partner of any kind, they may or may not have their own kind of wonky, and then you top it all off with whatever physical and mental/cognitive challenges we have that either twist things up or just flat get in the way of dealing with wonky.

Dysfunctions are part of life, same as heartburn and headaches. It's not a big deal unless you have attached a big deal to it to begin with. If you are using sex to express love and fail to express love any other way, you're going to have a really hard time when things go wonky. If you use sex as your entertainment and don't have any other diversions for pleasure, you're going to have a really hard time when things go wonky. You can do this all day and fill in the blanks

My life should have come with a warning label, since everything I got through is inside out and backward. I can't even imagine having to be married to me. But conversely, same with my husband. He came with his own baggage, as well. We'd both had previous messed up relationships, and we both had deep secrets about our childhoods involving trauma and abuse. It wasn't sexualized abuse for either of us, but it was every bit as traumatizing, so there were parts of us already closed off to sharing long before we met.

Everything we hear about marriage (and you can apply this to any sexual parnership) is about trust and honesty. You can have surface trust and honesty and still have none inside of you. Since a sexual partnership involves such interaction as allowing a person to learn how not to hurt you both physically and emotionally, it's easy to come into that already behind a fortress of safety. Some of us must operate that way because that is how we survived earlier grievances, but that doesn't mean we can't be kind and mindful of each other, even when we can't seem to share what we really need or prefer or like. Anyone who has been through emotional and physical abuses instantly understands what I am saying if they have consciously addressed processing their past. If you haven't dealt with that yet and shrug it off behind a firmly shut door, you cannot understand any of this because you are too closed off. When you are like that, you are using the other person, not sharing yourself. There's a fine line. You can love someone with your whole soul and still be using them because you have a demand that lines are not crossed, and you may not have even consciously addressed those lines. I think more of us are like this than we are willing to admit. Life on this earth kinda sucks and by the time we finally reach a place where we really long for soul-deep love, we are so closed off we cannot figure it out.

That was the kind of wall my husband and I ran into in our 30s, early on in our remarriage with previous kids, family all around inputting their negative opinions, challenges galore, and me dealing with my health issues while fronting that I could keep up. Which I couldn't, so there was a hurt pride thing going along with judgment from negative outsiders and my husband caught between all that. It was natural at that time that he'd fall back into old behavior patterns. Sex was about the only time we could seem to set some of that aside and just touch each other, so bringing up any more problems in that light was tantamount to taboo at that point, because it wouldn't have taken much more to completely break our marriage. That was our last option for managing to stick through the other challenges we were going through, and even though neither one of us could think wisely on it back then, I see now that our kindness of simply not beating each other up too much over sex fails was part of what saved us. The rest was sheer stubbornness, I think. 😄

But for real, first it was me, then it was him, then me again, and the times where sex was easy and good were rare. I had that back injury flaring up here and there on top of arthritic and other pain and some really monumental headache spells, and he developed a weird ongoing erectile dysfunction that could have gone back to injuries as a kid, and when we both overlapped these problems, sex was rough. His doctor told him the best way to treat his problem was to keep having sex, but there was no more information forthcoming from either the doctor or even my husband. We stopped even talking about it, just did it. It was up to me to establish what the lines were for my own pain, which became so excruciating at times that the only way I could orgasm at all (even on my own) was to grit my teeth and own it. Searing nerve pain ripping up your nervous system right at climax is a pretty big challenge, but there was no other way for 2-3 years. I was at a place where that pinched nerve was so bad that I had to drag in to years of chiropractor and then physical therapy just to keep walking, and that entire time I went through complications that felt like an arrow had been shot through the top of my left foot whenever I simply sat down, horrible sciatic flares, bearing down pains around my pelvic floor, groin pain like I'd been spiked, bladder and uterine pain that had no other cause or malady, just lots of pain. Sex was hard because any kind of new pressure in any direction anywhere increased the pain spikes, and then for some reason, orgasm itself was a fresh hell all on its own.

In reality, sex wasn't causing me any actual harm. The logic of sex, actually, was that I needed the extra strength conditioning to deal with that level of pain. That was before much could be found on internet, before we knew how to state our needs simply to doctors (my husband rarely saw doctors anyway, so we were on our own), and before we both made emotional breakthroughs about our pasts. The most logical thing I could think of to get through it was 1- kindness, and 2- patience, both of which I'm not naturally good at. I focused on problem solving, because that is what I was born for in this brain, and I became a sort of director- move this way, try that, slow down, wait a second while I, and sex became a clumsy couples physical therapy session with a very simple goal of either one of us just making it to climax. I wimped out sometimes, couldn't face my own pain, but I made sure he made it. No more laughing over frogs popping in my head. No more distractions. We literally went through undiscussed sexual workouts with each other for at least two years. Over time his erectile dysfunction worked itself out and he's fine, and over time my back grew stronger and healed from the pinched nerve and I'm fine.

That is what life partners DO.

As more time has passed and we've made individual emotional breakthroughs about our pasts, it's easier all the time to hang out and just be friends. As I've gone post menopausal and he's gone more diabetic, we've both become uninterested in sex together, which is actually pretty normal if you look around, but as far as I can tell, we're still fine. I take care of me, I assume he takes care of himself if he needs to, and we don't fret with each other over it. This house is our sanctuary and I like that we respect each other's space.

So now I'm learning about coconut oil and estradiol, because being post menopausal sucks for complications coming with dryness. It's interesting how treating dryness is affecting the arousal disorder, and that in turn is affecting depression and euphoric spells, pretty sure all these are linked through brain chemical processes. Got my little roller coaster going, but I seem to be doing ok with it.

Beyond that, everything in my head now feels like review. I feel like I'm coming up on the 'final', like when you're in college and the end of semester test consumes you. I feel like it's time to go back over everything I've learned and assess how I did with it, and then come to a conclusion about 'my stuff'.

After sticking through a major commitment to a relationship, I can honestly say I'm glad I stuck through it. Aside from feeling like we accomplished our goals getting the kids raised up right, I feel satisfied that I did my human duty learning how to apply what I learned about becoming a more kind person to the one person I committed my life to. That's not an easy thing. We went through years of wanting to call it quits, long spells of barely speaking to one another, things like that, but as water flows under the bridge, time cycled around and we can look back on that now with a few jokes. I can't imagine it having been better to split up, given all the problems we had that we'd have had to face all over again with new partners. I have to say I've been very lucky because I wasn't stuck through all this with someone abusing drugs or alcohol, he never got snotty hateful with me, never struck or pushed me around. We did have a bad day here or there where I'd be told what a drag I was on his life, and I'm not saying that was a good thing, but it was a real wakeup call for me because I really was a jerk sometimes. He didn't need me being a jerk on top of all the stuff we were trying to get through.

For whatever reason the world has become like it is, we have, as a society, been strongly brainwashed into believing that our sex lives are the measure of our happiness, and that we deserve to sex up ourselves any way we wish for fulfillment. I'm here to say that idea of sex is a drug. It's an addiction. I know what sex addiction is, I've lived it. Thanks to my crazy brain, I never turned that into anything selfish, like many people do. There are loads of people out there whose driving force in life is their next sexcapade, in or out of relationships, and some turn that into money making schemes. They model glitzy lifestyles like sex is all that and a bag of chips so they can make money off others, and boy do they get rich. Many of us fall for the glam of it, even if we don't fall into that abyss itself, and bring that home to apply to our own partner judgments and fails, and that isn't fair.

Sex is the most honest doorway in to your soul. If you are honest with yourself, you can see exactly what kind of person you are, could be, choose to be or not be when you use sex to rummage around in your mind and dig up your past. Why? Because sex is the fastest way our trust and honesty can be destroyed. Even if we are never sexually abused as children, the way we are taught to behave sexually can be very mind numbing to how we really feel in our souls later in life. Because I have this weird sense of self in a weird brain, I can see all this clearly. I can see the rubble strewn path others have to pick their way around just to meet me in the middle and talk about these things.

Kindness is logical no matter where you are in your own path. Kindness to yourself, kindness to others. Failure to be kind is our first mistake in any situation.

(Since 'peaceful protests' are messing up our minds, I'm going to insert that kindness also means protecting your loved ones when others will hurt them. It's that simple when we get down to the minute and second of that possible last breath of life, for those of you still freezing up over making decisions like that based on fear of reprisal.)

I bet you guys thought this post was going to be about all my really weird sex stuff, like object fetishes. 😂😂😂

If you were digging the soul stuff, this vid is pretty awesome.

luxurious

2020-09-17T17:18:00.004-05:00

Been awhile since I dug into assessment. At this point, the best word I can find to describe where I'm currently at is luxurious. I don't know if some of you would find this incredulous, but I've not been able to simply lay around in bed in the morning and luxuriously stretch without instant charlie horses, nasty joint pain, or a rush of dread from the chemical cocktails my brain sloshes over me for most of my adult life. Over the last couple of months, those 'early to rise' dilemmas seem to have ALL died down and gone away. Yes, I still have arthritis all over my body, yes, I still have fibromyalgia, yes, I still have mood disorder challenges, BUT they don't smite me first thing waking up. That is luxurious.

I've been very surprised. The only two big changes I've been compliant with my new doctor so far are adding losartan to my blood pressure meds, which kinda sucked getting used to because of the headache thing, and adding vitamin D to my diet. She discovered immediately that I'm D deficient (not just low), which no other doctor has ever checked on.

For years (decades) doctors kept me on meds that rashed me out in sunlight. A few of my worst years were so bad I'd actually break out in near boils within minutes of going outside. All I'd have to do was walk across a parking lot, a real challenge back then anyway, made worse by polymorphous light eruption, sometimes with fevers. Sometimes just a few minutes of sunlight could even trigger an autoimmune flare, and then I'd wind up on prednisone. As you can imagine, I didn't get a lot of sun, especially not enough to get sufficient vitamin D going.

How to Safely Get Vitamin D from Sunlight 👈 click that

You'd think it would be a given to just take vitamins. I had two problems with that.

1- My mom, in her enthusiasm, gave me vitamin poisoning one year, which later a hepatologist was shocked to learn and he called it child abuse. I was loathe to take vitamins after that for a long time.

2- Doctors back then kept me so medicated with handfuls of drugs that adding vitamins was frowned on as causing interactive problems. In order for the meds to work, I had to back off on taking vitamins.

That's horrible, you say. Yes, I say back. Imagine how many adults are suffering in this world with severe vitamin and mineral deficiencies because the medical culture we wind up trapped in deems it more important to keep adding medications instead of investigating malnutrution with comorbidities like diabetes and stuff.

So I was instructed to take 5000 units of D a day for 3 months, and then go down to 2000 a day. I usually wind up around 3 or 4000 a day. I'm not terribly stringent with my compliance. Still, I started noticing changes within a week, more within a month, and now at two months I'm experiencing so much change that I can legit say the vitamin D has got to be what's doing that. Simply bringing my blood pressure down a little more starting losartan doesn't account for all of this.

One of the first things I noticed was that my gabapentin withdrawal wasn't bothering me any more. For several weeks I sludged my way through the last of my receptor grumbling adapting back to my own normal, but that faded fairly quickly once I started taking vitamin D.

Click this 👉 Understanding GABA 👈

Gaba receptor meds essentially take over body production and when you withdraw, having to restart making it adds its own level of pain to existing pain, like having raw nerves ringing all day. I've been withdrawing off the last of my xanax, as well, so that is a double receptor challenge. I've done it before, and as ridiculous as it sounds, even a teeny tiny amount is still hard withdrawing from if you've been taking it for years. It's worse than quitting smoking, which I've also done. Much worse. The nerve sensitivity is pretty miserating. Fortunately, it's gotten way easier over the last month to the point where I'm barely noticing it. That's pretty huge for me.

8 Signs and Symptoms of Vitamin D Deficiency 👈 click that.

Right? That's a pretty spot on list for me. Muscle pain? I am the queen of muscle pain. Hair loss? I've blogged about years of hair loss. Depression? I'm a depression blogger. Bone and back pain? Ha, please, to the point of nearly complete immobility for several years. Fatigue and tiredness? Just shut up already, we all know how fail I am at keeping up with life.

To be comprehensive in a nutshell, I've become so relaxed over the last month for the first time in my life without any meds making this happen that I'm laying around in bed stretching like a cat for the first time since I can remember, with no sudden muscle cramps snapping me back, no sudden pain stabs dragging me down, and no sudden sloshes of weird adrenaline responses springing me out of bed. Just stretching because it feels good to stretch.

That's quality of life.

Before we go on, no, taking vitamin D has NOT cured anything. It's not a cure, ok? It's a nutrition problem solver. I'm still dealing with arthritis and neuralgia in my feet, knee challenges, other joints all over my body, etc. I'm not insinuating that anyone should start taking vitamin D without first checking with your doctor and investigating your current malnutrition status. I grew up on homeopathic 'cures' and can verify not a single thing ever EVER stopped me living a miserable life, so be smart about this, ok? This isn't about curing, it's about living better, feeling better, functioning better. This blog is about using our brains ever since I started it in 2011. If you are new to me, there are many things I've covered on my own healing path.

And I really thought I was getting enough because I'm a big dairy fan and vitamin D is added to dairy. You do not know until you get a blood test. You can see here I was clearly deficient, not just low on it.

I'm not going to go into any more about supplementing and how it works. You are big kids and can find and read it yourselves. Researching is important, but there is more to it than believing you must need it and then self diagnosing and self treating. Go ask for a blood test. This goes for anything you want to know about your body. Nearly everything is measurable, and if you are willing to pay cash for what your insurance won't cover, just tell the doctor that and you should be able to see where you are with your bloodwork.

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The next thing I'm dealing with is wrestling with comorbidity control. A comorbidity is any variable that makes a health outcome worse. When you add up comorbidities, you can basically project the potential complications you can die of.

One very strong comorbidity variable across all diseases is a person's weight. Being too skinny or too fat greatly increases the likelihood of not recovering from illness or not surviving a disease process well. Learning how to use a BMI calculator is my latest challenge. I'm right at 35%, which isn't the worst I've seen when I look at people around me, but still projects me into congestive heart failure with my diabetes and arthritis challenges, even well controlled.

As I age, my body can only keep doing so much. My new doctor is currently watching me for diabetic kidney disease. We have evidence that there is a level of damage that likely occurred in the past and hasn't yet gotten worse. That makes sense because I've had some very ill years in the past, oddly, no one back then addressed that kidney damage could have been happening.

As you can see, no other doctor has ever checked me for kidney disease before, despite a rough medical history. This is the only microalbumin test I've ever had despite years of autoimmune flares.

Know Your Kidney Numbers: Two Simple Tests 👈 click that

But that is an anomaly at the moment because my history of creatinine is fine.

Again, this new doctor is the first one to do really rigorous testing. No one else ever checked for the deeper impact and now we're going to watch and see if the microalbumin test is for real or a one time catch.

From What is a microalbumin creatinine ratio?

If your microalbumin creatinine ratio shows albumin in your urine, you may get tested again to confirm the results. If your results continue to show albumin in urine, it may mean you have early-stage kidney disease. If your test results show high levels of albumin, it may mean you have kidney failure. If you are diagnosed with kidney disease, your health care provider will take steps to treat the disease and/or prevent further complications.
If small amounts of albumin are found in your urine, it doesn't necessarily mean you have kidney disease. Urinary tract infections and other factors can cause albumin to show up in urine. If you have questions about your results, talk to your health care provider.

So there you go, possible big comorbidity with my BMI and diabetes. BMI is correlated with higher blood pressures, which I've had for many years, and higher blood pressures are correlated with kidney damage. It's high time I got all over this.

Another big comorbidity with BMI and diabetes is liver disease. Let's look at my current basic tests. You can see in the past that I had liver enzyme spikes.

My liver has been watched a long time. A doctor in 2010 brought up possible autoimmune liver disease, which would have killed me by now, and my new doctor recently ruled out hepatitis again.

My problem around the 2010 time frame was actually cytomegalovirus which is 👉 tested thusly. 👈 This is part of my medical history and it's very important because if it ever flares up again, I am somewhat high risk for death. Most healthy people have no idea they even have this virus, they don't get real sick. I was very ill for months. This is one of my main concerns for getting as healthy as I can and not fail into poor health again.

I also had a condition called NASH, nonalcoholic steatohepatitis that went even more years back into my history, originally caught in a different medical system after about a decade of very strong meds for continual autoimmune flares. An endocrinologist warned me to get off those meds, which left me with about a one inch long hard spot on my liver that showed up like neon on MRIs and CTs. That spot was there for years and has now resolved and the condition was dropped from my list of current health problems. However, I still had that problem when I got the cytomegalovirus infection, and I'm sure that was part of what made me so ill with it.

So I've had two liver diseases in my history, both cytomegalovirus, which inflamed my liver, and NASH. The hard spot resolved after I lost 50 pounds in 2011. So far I've not seen that return, but as I'm aging I'm having a harder time with slower metabolism and more arthritic challenge, so again, my BMI comorbidity with my diabetes needs some serious thought if I'm going to continue aging more gracefully. Obviously, my weight ratios are having a big impact on organs, and I'd be silly to dismiss it. I've already experienced how painful and crippling organ involvement can be. I may be hovering just above 200 pounds, which probably sounds laughable with so many people over that nowadays, but if I'm already experiencing health impacts, I know you will, as well. I'm sick of being sick, as it were. Keep in mind that many people don't have symptoms before they find out what's going on inside their bodies. Never hurts to go get a checkup.

~~~~~~~~~~~~~~~

As my D deficiency is being addressed throughout my body, my comorbidity control is coming into focus. I'm finding myself more capable, although I was still having so much trouble continuing a mild daily 30 minute workout that I could barely move my feet the rest of the day and it was very painful walking afterward. I'd have to lay down with my legs up to get relief. It was like when I was young and trying to roller skate after I'd sprained my ankles. Every step felt like so much extra work.

Intro new shoes. These are Asics Gel-Kayano 26 in 'Voilet Blush Dive Blue'. They are currently on sale direct from their website, not paid to link it. I'm really loving the color, it feels more autumn than the seafoam green next to them. You can tell I take really good care of my shoes, the green ones barely look used at all, but I've had them well over a year. Ah, yes, I mention it in June 2019.

I'm frugal. I'm horrible to not spend money on new shoes, even though I know I really need to stay on top of that if I want to keep walking, per my podiatrist. I'm commanded to keep my feet in top of the line athletic shoes at all times. I'm bad to not wear them around my house unless I'm working out, and then the workout increases my foot pain so badly that it's hard to walk the rest of the day. Guess what. That means it's time for new shoes. If your top of the line athletic shoes are no longer helping you through workouts, they're probably worn down enough to no longer be supportive. This means they aren't good for you any more. Junk shoes are like junk food. They make your health slide down that slippery slope to more misery.

I put the new shoes on yesterday and my workout was. a. breeze. Total validation for new shoes.

It's really important to keep walking to keep up healthy elasticity in the veins in my legs. Congestive heart failure creeps up slowly, basically starts with fluid in your legs getting stuck down there, and other comorbidities don't help that at all. Diabetes shreds veins, and higher BMI means there is that much more work getting those fluids back up. It's a horrible and very painful way to die, and I can say that after my dad dying from it. He wasn't diabetic at all and lived to 90, but that didn't make it any less excruciating. I have comorbidities he didn't have, so I'm higher risk to die earlier than he did, plenty of incentive now that I've seen it.

In 2011, all I had to do was stick to 1500 calories a day and 50 pounds melted off me over 4 months without any exercise at all. That's not happening this time. Even when I cut to 1400 calories a day, I'm not losing weight. When I look it up, aging does that. Metabolism slows down. There are ways to stimulate it, like with doing weights and other core workouts, so I am modifying my workouts again. I'm also looking into 👉 intermittent fasting. 👈 I have days where I'm naturally not hungry, especially when I'm going through euphoric episodes, and I was trying to make myself eat to keep my moods more even. I've decided that now I'm off meds, I need to pay more attention to my body, biorhythms and whatnot, moods. If I don't feel like eating, I can always sling a small protein shake down sometime during the day with my vitamins. Instead of just counting calories, I'm further spacing out the snack thing on hungry days.

I counted calories last month and noticed that even stopping at 1400, just snacking through the day seems to keep the weight on. I think I need to cut that out. No more something in my mouth every couple hours, which, if you are diabetic, is really normal because glucose drops are rough. Even when my glucose stays level, I crave to eat. The only way that stops is to just stop eating. The dangerous part of that is not realizing when I'm sliding into a hypoglycemic state, which doesn't have to be actual low blood sugar. For diabetics, that kicks off abnormally because the entire disease is about living with a broken feedback loop concerning digesting carbs in general. It reminds me of my drinking days. I was hardcore into alcohol in my mid 20s and was able to drink around the clock and still hold a job. I got really skinny doing that, so yeah, that's tempting but I'm an alcoholic and don't dare. That steady every so often alcohol intake made life bearable back then, and I've been noticing diabetes is exactly like that, a steady intake of carbs feels very much to my brain the way taking a drink every little bit did. It's a brain chemical feedback malfunction. It's a terrible lie I live with, thinking it feels better to nibble and not getting anywhere truly healthy with it.

I've noticed also that when I skip a meal and stay really engrossed in writing or gaming, I don't miss food at all, and I generally feel better through the afternoon and then sleep better that night. My body doesn't seem to miss the skipped food at all. I don't put anything into my digestive system to trigger the faulty feedback. That's a simple way of looking at a complex issue, but it's helping me see how I can try moving forward another way.

Intermittent fasting is an eating pattern. I think I need to study that some more and try it for a few weeks. If I'm naturally doing it anyway on my own when I'm not paying attention, maybe I can adapt it into a lifestyle. I just need to be smart about it and pay attention to how my diabetes responds. I'm the kind of person that can suddenly experience hypoglycemic symptoms out of the blue even if my glucose is still in the 80s or 90s, so being smart about this means not taking off to run errands or starting a workout if I've skipped meals through the day.

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Since I was shopping for vitamin D, I decided maybe it's time to add a good supplement back into my diet. I found a basic multi for 50+ with all the Bs, C, D, E, zinc, selenium (supposed to help with hair problems), calcium/magnesium kind of thing. I also picked up CoQ10 on the advice of my new doctor. She said it's to help with the problems taking statins can cause, but I'm taking it anyway. Haven't started the statin yet since I'm already dealing with fibromyalgia. A doctor long ago put me on a statin and I didn't do well on it, so I'm taking my time for now. After 30 years of meds with a full range of side effects and intolerances, I'm enjoying being on so few meds for awhile. As long as I don't eat junk and watch my calories, my cholesterol won't be getting worse.

Since I brought up supplements, remember not to take them within two hours of thyroid and blood pressure meds.

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I'm kind of in limbo in psychological assessment. I'm taking a big break, thanks to covid, just really sick of the whole 'we gotta wear masks' push and how stupid it is to be told in an empty waiting room at a mental health clinic to keep my mask on, and you tell me how in the world that is a psychologically healthy 'mandate' for people who are already messed up with fear porn and hypochondria. And then my psychologist was ok with masks being off during therapy while the whole covid thing was a hot mess, but once it all settled and the world went to mandating masks even harder, he suddenly became glued to his mask but kept moving it over to sip a drink while we were talking. That is worse than trying to have private phone convos with other people in my house.

So yeah, taking a long break. I've been privately working through some more of the progress I started making on depersonalization and dissociative issues on other blogs, and I'm not in the mood to talk about them here yet. This blog, weirdly, is seen more prolifically lately than my other blogs, probably because of covid, so I imagine a lot of us are working through all kinds of things with all the 'me' time on our hands. I think I'd like to reach a place where I feel more solid with some conclusions than I currently feel. Consensus, though, is that this explains a *lot*.

Hope you guys are doing ok. I'm staying busy. 🙂

face blindness, calories, instructions, horses

2020-08-27T07:43:00.006-05:00

Researching possible connections between prosopagnosia (face blindness, which I was born with) and dissociation (possible trauma induced prosopagnosia development), I ran into other research connecting empty sella syndrome (which I have) with high blood pressure headaches (which have landed me in ER and hospital more than anything else). I'll just copy/paste the entire thing over. Original post is here.

Things I'm still struggling with that I never talk about-

Despite all the vids I've shared and movies and shows I've seen lately, I cannot see Tom Cavanagh's face in my head unless I'm looking directly at him. The prosopagnosia is strong with that one. Joe Flannigan, no problem. I mean, I can at least get a forehead and eyes on him and I'm not even into Joe Flannigan. But yeah, I'm having as much trouble memorizing Tom's face as I had Scott's face and never admitted it for years. Imagine being married for 15 years before you even confess you can't picture your husband's face when you close your eyes and you're sitting right by him. I was born with this deficit, which would explain a lot of my childhood lack of friends. I don't usually think about it very much, but I'm wondering now if this could be related to my weird height projections when I watch TV, although I feel those are more trauma related and the prosopagnosia seems to be a hard drive problem, so I'm not sure how they could be related unless the prosopagnosia is also dissociative somehow. I think the reason this popped into my mind today is because my ENT doctor is very tall and a bit handsome and I'm always surprised like I'm meeting him for the first time, even though I've seen him a number of times over several years. (btw, appointment went great, yay) I can't picture him right now, either. I concentrated hard today on trying to remember, the way I finally got Benedict's face down after a couple years, but it's not working. Some faces just don't stick, even in small sections. I can usually zoom in on something like an eyebrow and then eventually reconstruct like puzzle pieces, but some faces are so slippery they fall out of my head like the Silence as soon as I turn away.
I still can't do simple math since the brain fail in 2004. My reading has finally snapped back fantastically, but I can't even keep a simple calorie count because I mangle the math so badly. My math dyslexia since 2004 is still really off the wall. Remember, I passed college algebra on the first try using an ink pen so I couldn't erase, which the teacher got after me for, citing I was intimidating the other students. I still can't keep addition columns straight. I can multiply in my head if I focus really hard, but I can't add in my head, something I'd been doing with ease since the third grade, or even on paper. Forget subtracting. Dividing seems to work just fine. Not one doctor in all these years has expressed an iota of concern or curiosity. I've asked for help a number of times, and aside from finding out I was being GAF scored by a psychologist, any kind of testing has been brushed off beyond having to remember a set of three or four words for a couple of minutes, and I even messed one of those up and was still pushed out the door.
I can't retain simple instructions from a doctor about anything unless I meticulously write it down. I don't mishear, because I do sometimes remember bits later in the day and realize I got something wrong, but trying to convey this challenge doesn't seem to connect up to how they have to repeat things to me several times because I'm obviously already getting mixed up, and I've been known to call offices back for instructions because the instructions on check out papers were so vague. Despite being able to retain loads of research (visual learning), I can't seem to retain audio instructions.
My short term memory is still horrible, but I'm getting better at hiding it or covering for it. I've been wondering if the memory thing has been a dissociative problem I've lived with all my life but was never aware of it till my brain flopped in 2004. I'm having to work so hard all the time on continuity since then that I can't help thinking I was about as oblivious as a person can be before 2004. That's gotta be why it took me years to pick up on the relevance of my GAF scores. I'd be very interested in what they'd have been pre-2004. Possibly worse? I was living with such restricting mind blinders that everything was black and white, and being a dissociated autism spectrum high IQ kid with PTSD triggers didn't help. I think I've arrived to a place where I can look back and see everything about me was about reactive survivalism.

~~~~~~~~~~~~~~~~~~~~~~~~took a break

Out of the blue it hit me to look up dissociative prosopagnosia. THAT got interesting. If you like weird brain behavioral studies, I hit the jackpot.

Prosopagnosia: a double dissociation between the recognition of familiar and unfamiliar faces. (Interesting PDF.)

Prosopagnosia as a Type of Conversion Disorder (So prosopagnosia is becoming a broader field of study, very interesting.)

Does anyone experience dissociative symptoms? (I was so relieved to find other people talking about this.)

Prosopagnosia Information Page

Prosopagnosia is a neurological disorder characterized by the inability to recognize faces. Prosopagnosia is also known as face blindness or facial agnosia. The term prosopagnosia comes from the Greek words for “face” and “lack of knowledge.” Depending upon the degree of impairment, some people with prosopagnosia may only have difficulty recognizing a familiar face; others will be unable to discriminate between unknown faces, while still others may not even be able to distinguish a face as being different from an object. Some people with the disorder are unable to recognize their own face. Prosopagnosia is not related to memory dysfunction, memory loss, impaired vision, or learning disabilities. Prosopagnosia is thought to be the result of abnormalities, damage, or impairment in the right fusiform gyrus, a fold in the brain that appears to coordinate the neural systems that control facial perception and memory. Prosopagnosia can result from stroke, traumatic brain injury, or certain neurodegenerative diseases. In some cases it is a congenital disorder, present at birth in the absence of any brain damage. Congenital prosopagnosia appears to run in families, which makes it likely to be the result of a genetic mutation or deletion. Some degree of prosopagnosia is often present in children with autism and Asperger’s syndrome, and may be the cause of their impaired social development.

My mom told me years ago that I was born with water on the brain, which is called fetal hydrocephalus. I never received follow up care or checkups for that condition, despite my mom describing how round the top of my head was with fluid after I was born, and naturally no mention of surgery. I'm sure my dad would have prevented any and all interference in my 'natural' development.

Around my late 30s, an ER doctor revealed I have empty sella syndrome, which I've always assumed was a result of that fetal hydrocephalus.

The most common symptom potentially associated with empty sella syndrome is chronic headaches. However, it is unknown whether headaches develop because of empty sella syndrome or are simply a coincidental finding. Many individuals with empty sella syndrome have high blood pressure (hypertension), which can itself cause headaches if severe. (My adult history is rife with high blood pressure and nasty headaches.)

Researchers believe that a defect in the diaphragma sellae that is present at birth (congenital defect) plays a role in the development of primary empty sella syndrome. The diaphragma sellae is a fold of dura mater (the outermost layer of the membranes that line the brain and spinal cord). The diaphragma sellae covers the sphenoid bone where the sella turcica and the pituitary are located. In some affected individuals a tear in the diaphragma sellae allows the underlying membranes to push through (herniate), which allows cerebrospinal fluid to leak out and accumulate in the sella turcica. The pressure exerted by the fluid can flatten or enlarge the sella turcica.

Prosopometamorphopsia and alexia following left splenial corpus callosum infarction: Case report and literature review (This is unrelated but shows how damage can cause distortion recognition, and if you think about it, I may have had a little damage during development or birth (there were no MRIs back then), although no one has ever noticed splenial infarction on my MRIs.)

Prosopometamorphopsia is known to be caused by splenial corpus callosum infarction [14]. In this case, prosopometamorphopsia likely occurred because facial recognition information was interrupted by the splenial infarction as it was being transferred to the facial fusiform area after being processed in the face perception areas of the occipital lobe.

I had a very very nasty headache in 2004 that lasted for several months (worst part was 6 weeks of sleeping only 2 hours at a time and unable to lie down during that 6 weeks), followed by brain changes that included losing my ability to do simple math, not being able to read for several years, not being able to drive for 4 months, accentuated memory problems and time disorientation, plus cranial nerve damages that resulted in loss of taste and smell for at least two years, unable to make tears in one eye for four years, and continued altered taste and smell. Did I already have a headache syndrome from empty sella that made bell's palsy exponentially more painful?

It was during that time that my prosopagnosia became so noticeable that Scott had to keep an eye on me because I'd follow other people around while we were out shopping. I had never told anyone before that time frame that I'd been unable to remember faces through my whole life. I'd always been smart enough to cover for all my flaws, or didn't even realize I had flaws because I'd already adapted so well. 2004 changed all that. I lost being smart.

So, as I'm sure you can imagine, I'm intensely curious about these brain changes and why I could never get any kind of doctor anywhere interested in finding out more of what was going on with me around 2004. MRIs from before that happened showed no obvious damage other than the incidental empty sella finding, which suggests to me that I was born this way and that all it took was one *something* (illness? poisoning?) one year to cause so much catastrophic loss for me, and it truly is catastrophic when you consider I got a 32 on an ACT test and now I can't even add and subtract correctly, and I couldn't read and retain for several years, much less the memory problems. I have been physically and psychologically dependent on my husband for 16 years because of this. The disability I was granted in 2009 didn't even reflect any of this. I was already autism spectrum with social deficits and severe depression and had been living with fibromyalgia for years before that even happened, and then in 2007-8 I grew so ill with a cytomegalovirus infection that I needed nearly round the clock assistance with everything I did for months. Notice I didn't even bring up the year I was ejected from a flipping car. Piece of cake, right?

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So this week I caught myself remembering my secret horse world when I was a kid hating being human. While other kids daydreamed about socializing and becoming someone, I was deep in a fantasy world in which I was a horse. I started a horse board on my other pinterest so I could dig around looking for what I used to daydream about. I'm into black liver chestnuts with fiery manes, although I like them super flaxen, too. The more jet black the chestnut, the better. I had whole families of horses set up in my head during grade school.

The original page for that is at https://www.wiebke-haas.de/gallery/outdoor/
Very load heavy, had to use a different browser to handle it.

Or here's one.

Here you go, have a playlist. I'm making supper now.

years later...

2020-04-21T17:15:00.000-05:00

I didn't realize how hard my hair post was getting hit all this time, it's all-time top post ever on this blog from all over the world, so I guess quite a few of us are having hair issues with illness and aging.

Here is my hair right now. I'm in a healthy phase with some regrowth after a really rough fall and winter with continual loss that got so bad I chopped my hair again in January. Stress was horrible while my dad was dying and extra family in my house, all is much better now, especially as I'm getting back to fresh raw veg and lots of quality protein and hydrating better. I also tapered off gabapentin, huge changes all over as that happened.

You can see top in front is still a little thin.

But I'm able to use a small puff of mousse nowadays (not near scalp) to help fluff a little.

Finally got some real gray coming in, sure took it's sweet time.

Remember, you are the one who controls your health. Don't despair, ok? If I can come back from a decade of health fail to the point of becoming crippled and losing my hair, you can too! It takes time, in my case, I've been dealing with this since 2004 when my health started crashing hard and didn't make a turnaround until 2008, and didn't really show much improvement until 2011. Since then I've had ups and downs but as long as I'm stringent about avoiding carb loading and sweet drinks, I seem to be able to stay in control overall and have never (yet) slid back into full health fail.

You can do this. 💖

hi

2020-04-03T18:12:00.000-05:00

I guess it would be nice of me to let you guys know I haven't croaked off yet or anything.

I'm actually in pretty good shape. Between getting completely off wheat and controlling seasonal allergies (these are the two things that seem to be the mile markers), I haven't had autoimmune flare since 2014.

Blood pressure definitely tied to pain level, salt, and meds. Pain level tied to diabetic neuralgia and controlled with diet and physical therapy, nearly completely off all pain meds now, nearly done with gabapentin taper.

My stress level and PTSD is coming more to light now, see latest personal blog, should be in the right column. Memory problems possibly related to dissociation from traumas. Working on that.

After some of the illness fails I've been through, I can't imagine covid being any worse, and I mostly stay home anyway, so I'm not worrying.

But yeah, still here. Just lazy. 😄

update test

2020-02-07T10:23:00.002-06:00

Ignore this, I'm trying to figure out a widget problem.

:edit: Apparently that problem cannot be fixed without an overhaul, so I'm going to ignore it for now.

what the hell, just throw it out there

2019-10-01T14:36:00.001-05:00

I think I came back to this last summer... Not done yet, probably won't finish, not even sure now what the point was, but I kinda feel better now, lol.

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Started working on this about a year ago. Before we go on, I'd like to note that I'm not nearly so miserable as ten and even five years ago. Untangling all this information over time has been extremely beneficial to my overall health, and I believe that it's important to understand our chronic states in order to live well or at least better with them. That being said, it's been a rough ride...

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I've had the opportunity to talk to quite a few people privately over the years about the emotional challenge of getting a new diagnosis, the impact it has on the psyche, both subjectively and objectively, and the difficulties that come up attempting to discuss these feelings with friends and family who have never received a similar diagnosis themselves.

Part of the overload is all the new information itself, finding and studying all the sources (medication information in particular is daunting), and then running into 'bad day dumps' in medical forums that can scare the living daylights out of a person.

Since I'm so experienced with 3 decades of diagnoses acclimation under my belt, I am in a fairly good position to share quick takes on how these jolts affect communication between subjective patient and objective family and friends. Right off the bat, even if we're not really alone, no one can cross that very personal bridge of raw experience with us in our heads, and it's hard to understand how supportive people react adversely while they're feeling frustrated or overwhelmed themselves.

My mess started out very complicated and took years to untangle, and more years of trudging doggedly through searches for better treatment. It wasn't until I created my own medical team and my own self care plan that I began to see positive change, and I had very little emotional support doing it. Blogging has helped fill that void, and also helps me filter words through the emotions so I can more easily share what needs sharing with my family and friends. In my experience, bravely holding back the tears while attempting lengthy explanations is a mistake. Keep it simple, let the stabs of emotional pain bring a tear while you talk, and you will hopefully get that breakthrough to the empathy you need.

💗

Since I've had 30+ years to acclimate and basically talk about one or two things at a time, and since several people have let me know how comfortable they feel talking with me about all their own scary stuffs, I probably need to create a context area with ALL MY STUFF in one place. One of the ways I've survived is by looking at the whole body holistically. Every system in the body affects all other systems, every limb and organ affects all other limbs and organs, every brainwave and experience affects- you get the idea. Basically, freaking out makes everything seem monumentally worse and there isn't much you can do about that part except stay busy and distracted until your adrenaline surge filters back out.

These are my official noted health issues with occasional links to information, and my own comments with relevance to the anxiety many people feel with each diagnosis.

Underactive thyroid, dx'd in late 20s. When I hear people say "I don't want to have to take a pill the rest of my life" and they seem very upset about the idea that they could 'die' if they don't live like that, please allow me to reassure you that taking a thyroid pill for the last 3 decades has saved me so many other more complicated health issues if I had decided not to live my life taking that pill every day. My thyroid crashed one year to the point of serious lethargy, intense joint pain and brain fog, and failing health when one doctor in particular failed to monitor or send me to a specialist when asked. You absolutely cannot get better in any other capacity, be it mental or physical, unless your thyroid problem is carefully compensated, and that alone will help you solve all the rest much faster. When thyroid fails, all else fails, point blank. When in doubt, check TSH first, even for mental states. All that being said, I understand how difficult it can be to get a primary to send you to endocrinologist. You can see from my own test results graph what a difficult time I had with one particular primary for awhile. This graph goes back to 2008, which I have blogged about before being the year I finally put together my own health plan and care team and started talking to my doctors about health goals, with my psychologist helping me learn better communication with my doctors. Even then it was three years before I got real help from a much better primary who listened and followed through on my requests to see specialists.

Irritable bowel syndrome. I spent ten years across my 20s and 30s with severe abdominal cramping and urgent bathroom needs, to the point of getting out of jury duty 3 times. This was well documented with tests galore. In the end, very long story short, that all changed and WENT AWAY when I stopped eating potatoes and anything with flour in it. Turns out I apparently have a terrible time digesting starches and overloads of simple sugars, and my body carried on like I was poisoned every time I ate cookies, pie, cake, rice, tempura, cereals, giant loaded potatoes, potatoes and gravy, etc. I blamed it on everything else for years. Guess what, I'm still eating all the raw veg and fried food I want just fine without a problem. All I had to do was eliminate refined flours and sugars, and no more suffering. AT ALL. In the meantime, whatever is triggering yours is extremely disruptive, and I know it's crazy scary thinking about the horrors of being so young with a colostomy bag. I assumed I'd wind up like that, so it was a real surprise when I didn't. I'm finding out this is not that uncommon for young people, nowadays likely winding up with a Crohn's diagnosis, and it's debilitating in so many ways, not to mention utterly embarrassing. My body finally just had enough and I started having hard and fast airway problem reactions to foods to the point where I was forced to strip my diet down and do the slow add back, keeping a food diary, and starting over again every new time it happened. I can confidently point to cashews (and related nuts), all citrus, and definitely wheat in all forms (not just gluten) as being my arch enemies. Once I purged my house of all these (all were separate very scary incidents) and stopped 'carbing out' in general, my IBS ceased to exist. My life is sooo much better now. I haven't had regular bread or pasta since 2014, and that did more to lift severe brain fog than any other change I made in my life. And I say this as an ex smoker and drinker, too. Wheat and sugar was my nightmare, and every bit as addicting as narcotics and alcohol, in my opinion. I wish you all the best if you decide to purge these evils from your life, as well.

Fibromyalgia, dx'd so fast in my 20s that heads spun because it was so bad. They checked me for *everything* and have watched me for MS for years. Fibro sucks, and I went through every conceivable bah humbug from family and doctors galore for years. Know what? It's a confirmed nerve system disorder now. Mine is so bad that I have to go through regular fascia shredding all over my body just to be able to self care around my house. This is an extremely depressing diagnosis to get, and you have my permission to enjoy visualizing punching people out who give you crap about it. Btw, I have the costochondritis kind, which is continually mistaken for heart attacks, pleurisy, one doctor even thought I was describing a broken rib. This has greatly impacted many other diagnoses and treatment until I finally just figured it out myself. Not one doctor has ever offered me treatment or relief for fibromyalgia of the chest wall, and no one I know understands what a drag it is to say I have chest pain and immediately be flung into ER for 6 hours just to rule out heart attack and pulmonary embolism. Fibro flares are very costly, and I finally just stopped saying I have pain anywhere around my chest, even when it's brutal. I would compare the pain to being kicked in the breastbone rib cartilage area by a horse. The depression that comes with it is just as brutal, so I keep myself very distracted and focused on enjoying a game server or a TV show or puttering around my house while I'm in flare up, which can last days to weeks. I've learned not to expect so much and then kick myself for fail. That's a very silly way to live in one's head, and a very hard habit to break, but if you think back to how that all got started, maybe some kind of guilt thing growing up that turned into a self punishment cycle, you realize life is too short to stay on that hamster wheel. Life sucks enough without beating yourself up, and unfortunately, fibromyalgia has been associated with perfectionists. That's a big load of tension right there. I have a reputation for powering through, and physical therapists have showed me how I actually harm myself doing that. Learning not to power through was hard, it's a very bad habit to ignore or dismiss oneself as not worth stopping something for. You are worth more than that! I decided that being called lazy at certain points of my life and me powering through to prove people wrong was a really stupid troll trick to fall for. Pooey on them, this is my life, they can eat worms, right. Nowadays I dismiss the trolling and find ways to enjoy slowing down.

High blood pressure disorder, late 20s. Complicated, but it's gotta be genetic and related to undiagnosed diabetes and a whole load of other poorly treated problems. I was medically dismissed horribly for my blood pressure for 2 decades before a good doctor finally got me onto a safer treatment. If you've never experienced your heart feeling like it's exploding out of your chest for a week on the wrong medication, you have no idea what fear with every single breath really is. There have been months on apparently the wrong med or wrong dose where I've had to pull out of heavy traffic so I could get out of my car on the side of the road because my blood pressure spiking up and down was so intense that I couldn't just sit and drive. It got labeled as anxiety disorder, naturally. That stopped when I finally got put on beta blocker. Every time my doctor tries to migrate me off beta blocker to another med, I go through that all over again.

Headache. One of the vaguest notes in my entire medical history. My worst headache was 6 weeks long and was so awful that the most sleep I got at once the entire time was 2 hours or less. I was blown off with 'migraines' until a genuine viral illness on top of real preexisting nerve damage was confirmed. My headaches didn't lighten up (and even stop!) until I went through aggressive deep tissue ASTYM therapy on the back of my skull and my neck. They said the fibrotic scar tissue was the thickest they'd ever seen, likely from a nasty whiplash I got being ejected from a flipping car.

High cholesterol. The funniest part of that diagnosis is that changing my diet up there completely solved that one. Who knew refined flour and sugar jerks your cholesterol around worse than fats. Why isn't this common knowledge? And yet it's true.

Malaise and fatigue. I can't even begin with this one, just if someone says they're tired, stop pushing them to keep up. THEY ARE TIRED. Something is wrong and pushing them only makes it worse. You can't will yourself into higher energy when systems fail is going on somewhere. And once that hits, my brain falls out and I'm nearly nonfunctional. This has improved markedly with controlling my diabetes and years of physical therapy for pain.

Autism spectrum. I was both relieved to find out I fit into a subset of normal and crushed to learn that I was missing a vital function component that I had to work extra super hard learning to make up for in order to be accepted as a human being. I like me, I'm ok with me, but apparently I am viewed as something broken and a very real percent of the human population would like to see people like me wiped off the face of this planet. Welcome to the human race, I guess. Geez, guys. I seriously cannot bring this diagnosis up with ANYONE without being reminded that I'm using it as an excuse to behave poorly, even if the other person is behaving worse than I am. Basically, my meltdown is against some kind of social law, but 'normal' meltdowns from people all around me are ok. From my point of view, if others had to self monitor like I do, none of us would be having meltdowns at all.

Pain disorder with psychological factors. Because depression makes everything hurt more, obviously. Funny this isn't equated with the fibro and autism being tied together in the same nervous system, maybe throw in some lyme and epstein barr for kicks because life isn't hard enough already without real causes while people are telling me I create my own 'pain'.

Acid reflux disease. Yeah, mine actually got pretty serious, and, again, it ALL went away with that diet change I keep bringing up.

Nasal inflammation due to allergen. Took years to even get that documented. I wound up doing ambulance rides with nebulizers before that was taken seriously enough to get noted. My entire airway was on fire through most of April in 2011, no sign of infection or other malady.

Other benign neoplasm of connective and other soft tissue of lower limb, including hip. That is a coding thing for billing purposes, and I think it was related to the uterine ablation I wound up getting.

Abnormal sensation. Absolutely maddening notation. My entire face and head were going numb and they did special tests making sure the blood vessels in my head weren't going thru an autoimmune flare. That was intensely scary and not one soul in my family had a clue. I'm just a weirdo with a numb head. I cried when I was alone, and I was extremely relieved that wasn't the cause. After a few years of intense physical therapies slowly nailing down causes for referred sensations, that one is turning out to be nerve damage repair over time. I was so used to unremitting pain that numbness in its placed terrified the hell out of me. Four years later, we're actually mapping out areas getting sensations back versus still numb areas, my entire back is like a patchwork quilt of numb areas when I literally cannot feel someone touching me.

Uterine fibroid. Lol, was that the benign neoplasm?

Mood problem. That's a nice way of saying that several doctors have locked horns over whether I'm actually hardcore bipolar or not, but years of all the rest of everything wrong with me kind of cushioned this one for me. Like, who even cares, right? But if I want to stay off the hell of pain meds, which masks the mood problem, then I had to learn to monitor the mood problem. Took a couple of years to realize it's a very definite real and separate issue that I actually did need help with. This kind of diagnosis on its own without anything else around it is extremely soul crushing to many people, the idea that you're mentally ill and broken and can't retain control over your cognitive states from one minute to another, and to reach out for help and not get what you need from people who are supposed to care about you is devastating. This diagnosis alone is rife with self medicating complications, social interaction problems, self defeating behaviors galore, and if you truly want to survive a mood problem, you've got to find a way to make friends with yourself, because it really is like Jekyll and Hyde. If you can't find a way to depend on your own self somehow, you have to go on head meds, you have to check in and be monitored, and that is humiliating enough without all the severe depression from the sabotage with comes with the mood swings. Mood problem is a very intense diagnosis to find peace with.

Trigeminal neuralgia pain, also known as the suicide disease. I lived with this for decades before it finally got diagnosed. In spite of all the other problems listed above this one, I'M STILL HERE.

Seasonal allergic reaction. This has resulted in several blood and skin test sessions, and two trips to pulmonology because 'reactive airway' went anaphylactic a few times. There's absolutely nothing wrong. I'm of the opinion, after many long years of this, that my body is so wired to freak out that it reacts on general principle if I don't force it to stay calmed down with round the clock antihistamines, and starting to reach consensus with psychologist that my fight or flight through child trauma likely got stuck as my default through adulthood, so I'm working through understanding and applying psychoneuroimmunology. Basically, a stressful childhood and first marriage set the stage for a wrecked adulthood.

Bilateral carpal tunnel syndrome, March 2016. Oddly, one side responded very well to therapy and avoided surgery, the other did not, but thank goodness for the surgery. I got at least 60% recovery and a huge reduction in pain.

Severe obesity (BMI 35.0-39.9) with comorbidity, July 2016. You know, I never took this that seriously until I really started looking at aging problems. I'm doing my best now to not make my BMI worse simply so I can retain as much capability as possible before I'm stuck with assistance again.

Family history of ovarian cancer, August 2016. (This is just a note. I have never had cancer.)
BRCA negative, October 2016. (That was to make sure my family genetics wouldn't be a factor in cancer later.)

Sleep apnea, October 2016. I love my CPAP. I know some people really fight with theirs, but after decades of severe sleep disorder, I am loving sleeping. Mine seems to be more central apnea than regular, but it's still making a huge difference.

Abdominal pain, pit of stomach, October 2017.
Abnormal CT scan, October 2017.
Gall bladder inflammation (noted during removal), November 2017. I so wish I had done that sooner...

Fever, February 2018. ??? This was during a 'common cold' stint that became famous around here as the 2-week cold.
Chest congestion, February 2018.

Plantar fascial fibromatosis of left foot, March 2018. Not the same as plantar fasciiitis and considered uncommon.
Heel spur (right foot), March 2018. Seriously, my feet hurt bad all the time.

Right knee pain. Arthroscopy to remove bone chip and clean up arthritis. Another one of those wish I'd done this years ago things. I was literally crippled in that knee, now I'm not.

Ear pain. This is one of those late comer notations, because many years of ear pain was never documented before. I'm sure this one will be ongoing, but in the meantime, several trips to ENT are only confirming normal aging and not addressing the pain. I suspect it's related to the trigeminal neuralgia or another cranial nerve. My ears have felt like ice picks are stabbing them for years, to the point where I can't tell whether I have ravaging ear infections. It's all the same to me. Imagine spending your life feeling like you have ravaging ear infections with no relief.

Primary osteoarthritis of right foot. This was only recently noted, but it's bad enough that I could opt for surgery at any time. Podiatrist said keep my feet in high quality athletic shoes and put off surgery as long as possible. He says foot surgery is the most difficult to recover from and the worst for infection.
Diabetes with neurologic complications, related to neuralgia in my feet.

The following list is a separate part of my health record, I guess an at-a-glance health history page.
Allergy
Fibromyalgia
Cytomegalovirus Infection
Autoimmune Disease fibromyalgia
Disorder Of Thyroid Gland
Irritable Bowel Syndrome
Headache
High Blood Pressure Disorder
Underactive Thyroid
Lupus
Joint Pain
Liver Disease cytomegolvirus
Allergy To Latex
Sleep Apnea 10/19/2016
History Of Abnormal Cervical Papanicolaou Smear
Personal History Of Other Diseases Of The Female Genital Tract
Personal History Presenting Hazards To Health
Post-operative Nausea And Vomiting
Motion Sickness
Back Injury
Neck Injury
Chest Pain
Diabetic Nerve Disorder 2011
Disorder Of Muscle
Migraines
Diabetes
Personal Notes About My Medical History
Notes entered here will not be viewable by your doctor.

Ablation Sup
Endometrial 7/16/2013
Hysteroscopy 7/16/2013
Colonoscopy, 10/7/2016
Upper Gi End 11/7/2017
Lap,cholecys 11/14/2017
Hx Cholecystectomy

I bet a furry cpap would actually work really well

2018-03-11T23:52:00.002-05:00

click for funny pinterest

I can't sleep. 😕 I skipped a benadryl dose today, which you'd think would be a tiny thing since I'm on twice a day zyrtec, but my sinus went into overtime just before bed and now I have one of those throbbing headaches that sharply accentuates my awareness of every breath through my CPAP mask. So now I'm waiting for the benadryl to work, hopefully I'll be able to use that tonight. I'm in the middle of doubling a med dose that can make apnea worse, so if I sleep without the machine I'm risking not only poor sleep, but everything associated with my OSAT dropping into the 70s will ramp up my risk for heart strain and the resulting morning headache, not to mention the nightmares that sets off.

How many people die each year from sleep apnea? Is there any way to determine sleep apnea or sleep apnea related deaths in a year?

Yes, you can die from sleep apnea. Carrie Fisher did.

19 Celebrities with Sleep Apnea

There are different kinds of and causes for apneas, and evidence for mine goes back to a car accident I had at 19. I very likely had concussion and possible brain steam injury, with most of the scarring and pain located at the base of my skull and the top of my spine. My sleep history is alarming. I stopped sleeping more than 2-4 hours a day for about 2 decades because I was so terrified of waking up from the worst nightmares ever to wildly racing tachycardia that finally had to be surgically corrected. I described sensations that had a doctor sending me to seizure testing, which turned out normal. I grew so fearful of medications not letting me wake up that I stopped taking them completely, choosing to live with excruciating pain for several years. I finally reached a point where the apnea became so bad just during a short nap that I was unable to stand and had to crawl for several minutes before I could regain control of my body and orient enough to function. How I never had strokes in my sleep is anyone's guess, because my blood pressure goes insanely high while that is going on, despite regular blood pressure medications and otherwise healthy lifestyle.

In short, I am very high risk for not waking up one day. My CPAP machine cannot force me to breathe with this kind of apnea, it can only encourage it and keep my oxygen levels high enough to keep my brain from failing so quickly, and hopefully make it easier to keep healing. Doctors have told me this kind of apnea can increase brain dysfunction and damage, and even though by regular standards I stop breathing far less than other apnea patients, I simply don't restart breathing as quickly as they do. I literally have reached the point a few times where I was very close to not waking up at all, and my body was fighting as hard as it could trying to get me to wake up and just BREATHE.

I'm really liking 'getting my brain back' this last year, and I'm especially liking sleep nowadays. I still don't usually sleep more than 5-6 hours a night, but it's a much healthier sleep than I've had in decades. I can tell I'm handling more activity and stress than I used to be able to handle, and I last a little longer before I hit my fatigue wall.

It would be easy to just toss the mask aside on nights like this, but I'd rather feel my sinus calm down and airway open back up again, and then start over with the mask. I feel safe with a mask on my face. I don't panic in my sleep very often any more. My general anxiety level has come down a bit, and the nightmares are nearly gone now. And looky that, writing this out gave the benadryl time to kick in. Laterz.

wizard level health management

2018-02-12T20:35:00.000-06:00

Tossing this one over here. I probably put way too much of this stuff on Pinky blog.

The Good- I got boosted to moderator on my fave game server this weekend. 😍

The Bad- I think I've overshot my tolerance level for Nick Jr. Can't wait for snow days to stop happening.

The Ugly- Currently overlapping tamiflu and z-pack, doubling all my antihistamines (zyrtec- long acting H1, benadryl- short acting H1, pepcid- H2), requested inhaler, hopefully that gets filled tomorrow. Crazy weather changes and living in cedar/juniper country brought a pollen burst upon all the flu/crud/cold suffering in my area and there are alerts going around now about asthma can kill in these conditions. Lungs are clear but bronchials squirting like lawn sprinklers reacting to the pollen and I'm racing to stay ahead of all the wet in there, crossing my fingers I don't wind up on pred. Can't take cough meds, so I'm doing what I can not to cough, but the resulting upper torso fibro flare is real and today was charley horse hell around my entire ribcage for awhile, literally couldn't move for about an hour and just stood around attempting to stretch some of it out without triggering it worse. Ear pain has reached suckage level. Throat feels punched. Eye slime is starting to dry up, so that's a good sign. Thrilled I never once developed a fever while influenza B was active in my household.

~~~~~~~~

Tomorrow I make two trips into town, which means 80 miles of driving. Really hoping Wed and Thurs are real days off for me. I desperately need to decrust my kitchen floor and reclaim a few surfaces. Have started spring/summer planning aka it's time to watch the super sales and replace clothes wearing out. I'm still in a lot of the clothes I got before Bunny was conceived, which means most of it is over 5 years old, and as frugal as I am, I've been wondering for several months now how a particular pair of jeans hasn't poofed away like dust.

Pain management needs to happen, but I'll be taking it much slower this year. Neuro said I could double gabapentin as needed since it's a baby dose (does NOT work like tylenol or ibuprofen or opioids), but we all know I won't just sporadically do that on whims after what happened last year when he tripled my dose and I had to cut that back down. I'll be touching base with the arm/hand surgeon in March, hoping to wind back up in occupational therapy on arms for another try. Of all the things I've been assessed for, no one has actually looked at arthritis in shoulder, so this could get stupidly painful in therapy. I'm keeping range of motion ok, but losing strength and grip through the range of motion, and the pain is referring like crazy last few months. Will also be assessing feet around that time, although neuro says indication is arthritis coming on in hip joint and referring to feet. This is on top of neuropathies I've had for years from injury and flares, so I'm wrapping my head around getting a controlled burn/crash plan in place for the rest of my aging. Totally dreading going back on full meds. Most of the time I'm too busy to think about this stuff, but experience keeps tapping me for attention and reminding that putting it off too long will mean more work getting control over it later.

Have to stay healthy! I breezed through gallbladder removal recovery and a house full of flu victims last 4 months, so it's actually pretty exciting that I have gotten such good control over my health planning that I'm not the one dragging everyone else down for a change. Water, proteins, raw veg, good sleep, and taking the time to move around and keep up my stretches and nerve glosses, was even able to start walking a bit again this month. Keeping the allergens down in a house full of people has been challenging but I'm a washaholic with anything laundry, Scott compulsively vacuums, and we have HEPA air purifiers in several rooms. I know my CPAP has made a huge difference since I breathe through more filters in my sleep. Pre and probiotics are a big deal, too. Healthy gut, healthy body. As long as I control my glucose levels and keep up all the rest, I can take fewer pills, less impact on my liver and kidneys, faster healing, and now I've leveled up to fewer actual sick days for the first time in a decade, and that's with a small child bringing every germ from school into the house. I worked really hard getting here.

try not to bend

2017-12-14T22:10:00.000-06:00

click animations for lots of cool dividers

I am so hungry. I run into all the horrible things people write on the webs about recovering after gallbladder removal and it's just easier not to eat much. I slipped up last night and had my first 'big' meal (I'm 4 weeks out from surgery), ate 5 homemade chicken tenders and spent the night with a bit of a racy heart, like I was in distress. No pain, no nausea or anything else, but that was uncomfortable enough to slow way down on the food again today.

Oatmeal is a life saver. I eat half a serving because diabetic and carb counting (not on meds), and that pretty much controls whatever bile problems might erupt, guess it just kind of absorbs it like a sponge. I also metered out a rice hotdish for a few days with just 4 ingredients- sticky rice, canned chicken, shredded cheese, and broccoli cooked soft enough to crumble up. Stir it all together and add a little onion powder, get it all hot in the oven, and that is a great way to get a little bit of protein and veg and the rice slows everything down and kind of acts like a sponge like the oatmeal. The key to it all, though, is small portions, hold the work detail way down while my body gets used to a missing organ.

The rest of my body is screaming bored. Now that the overwhelming referred pain and constant localized clamping down on inflammation and staving off possible infection is out of the way, my body is no longer having to work so hard keeping an ill organ under control, so the rest of my cells are getting better shares of incoming basics, like fresh nutrients, fluids, oxygen, rest, etc. No more sacrificing for that crazy inflamed gallbladder, right. Except now, healing makes that area a protein hog and I'm feeling a bit STARVING FOR MEAT, lol. Thank goodness I seem to be handling a little bit of milk and cheese ok. I don't think I'll have any more chicken tenders for awhile...

So I guess this is a big deal. At first everyone was all like yeah, you'll be good in a couple of weeks. A month later I'm still running into stuff in med forums about 6-8 weeks and don't lift ANYTHING over half of what they told me I could lift after 2 weeks. I'm finding stuff like this on everyone from professional athletes to super spoonies at death's door. Rule of thumb is give it a couple of MONTHS and even up to a year (or two) to get back to some kind of normal. O_O

I don't see a lot of people writing out exactly what this feels like unless they're freaking out, so I'll point out that the laprascopic punctures combined with the air puffing up the abdomen combined with the digestive system going into shock for a couple of weeks combined with the body overall readjusting to what is basically stab wounds, organ theft, and possible complications that include little bits of fevers here and there, to me mostly feels like I did too many situps the day before and now I feel like I need to be a little more careful doing things. And if I'm not as careful as I should be, I feel it pretty quick, and trying to power through makes it worse. Like, I mopped my kitchen floor last weekend, and I felt that for 2 days kind of thing, so I laid down a lot in between chores during the week.

I've been able to get out to Walmart for some light shopping, and I'm keeping up ok with laundry and dishes, but I'm very tired most of the time. It's funny because being spoonie, even though I'm actually feeling fantastic having that inflamed gallbladder out of the way after 9 months of croaking off with it, I hit that fatigue wall super fast because recovering from such invasive surgery isn't the piece of cake it sounds like. I mean, it's way better than being sliced open, for sure, and getting to come home right away was definitely preferable, but getting a routine back has been a bit of a challenge. I haven't helped much at all with anything holidays, and I understandably pretty much stopped cooking.

Bending is the worst. Too much bending, like tying shoes or picking stuff up off the floor, is like instant bloat reaction and the rest of the day is very uncomfortable, especially to drive or sit and watch TV. Standing up feels the best, walking kind of helps if I'm not too tired, and laying down doesn't feel as good as you'd think it should. If you have any kind of abdominal surgery, get one of those long reachy clamp on a stick things that help you pick up stuff like a sock off the floor. Bending seems to really aggravate, maybe because it puts more pressure on where it's still a little swollen in there.

If you have pets or kids, they will destroy you just bumping around, even weeks later, so keep your automatic guard up and put a hand or arm up before you get bonked anywhere on your stomach. And seriously, don't lift much. Buy your milk in half gallons, stuff like that. Don't be stupid and lift a frozen turkey or a watermelon. I really don't know how people with small children survive surgeries. And if you live alone and have to walk a dog at all, you probably need to just plan on offering someone some cash or a gift card to help you with your pet for the first couple weeks.

This hasn't exactly been a piece of cake, BUT I am apparently very healthy and healing very fast, compared to the nightmares I'm finding online and hearing about from other people I know. I have been working very hard on regaining my health since 2008, the most improvement coming since 2011, with one of the top goals being to get healthy enough to survive surgeries without complications and hospital stays. I changed my diet, committed to physical therapy, started exercising, got help with my sleep disorder, touch base with mental health regularly, managed to clean off handfuls of meds over several years, and am now passing the test with flying colors. I am exactly where I want to be with my health in time for the real deal. If this surgery was done 9 years ago, I'd have wound up admitted and probably even in ICU and then convalescing for months, so it totally paid off to map out a plan and then commit to the step by step process, even though it took a long time and most of it was pretty hard.

I will be 60 in 4 years. By the time my mom was 65 she was in a nursing home. I will not go gentle into that good night. I will not bow to my fate and call it natural aging after a lifetime of sugar and intermittent bouts of heavy smoking and drinking. I refuse to own the mess I made of myself and accept it as 'life'. I want back everything I wasted and robbed from myself, and it's my job to make sure I don't become the burden I would loathe myself for being.

I am so hungry. But it's a good hungry. It's a very healthy feeling compared to the months of swan diving into any distraction I could trying to ignore the problem. I'd rather be a little hungry than in a hospital.

Surgeries aren't fun any time of the year, but I can say first hand they suck during holidays. If you are having surgery or in recovery this month, bless your hearts. 💗 I hope it all goes well with you.

this also comes in purple

By the way, if you are looking for holiday gifts for older or challenged people, check out home medical supplies in your local pharmacies and retail stores online and point blank ask them if they need any of that, or would they like a gift card. An easy reacher is an awesome thing to have around the house, just saying. 🎄

the unforeseen complications of cervicogenic headache after surgery

2017-12-03T06:55:00.001-06:00

click pic for great article

This.
A Headache From a Pinched Nerve

So many years of physical therapy, strength training, mobility work, chiropractic, and massage for a nasty whiplash from an ancient very nasty accident that healed with all kinds of scar tissue hardened throughout the soft tissues, all nicely undone during one little surgery requiring precautionary airway during anesthesia.

I have everything in that above 'headache' link's list regarding causes for cervicogenic headaches. Another outstanding article is Cervicogenic Headache from the American Migraine Foundation.

I've thought a lot through the years about what it must have been like for people who've had their heads chopped off. Guillotines were heavy enough to lop them off quickly, but someone hefting an axe over another someone held over a stump could easily rebound off a cervical disk. I mean, I've actually done that butchering chickens in the old days, and I hated it. Chopping through neck bone isn't easy, especially when someone is squirmy, and getting a clean lop requires a confident and meaningful downward swing with a good axe. When I hear in the news about journalists' heads being cut off in other countries, I know it's not quick and that they suffer quite badly.

Television makes it look easy. Characters with nothing but swords whop heads off left and right, no problem. If our heads could come off that easily, we'd all be losing heads every time we fall down the stairs or on a patch of ice. Our necks are almost like a string of crochet or macrame, all those interlocking pieces with really tough fibers wrapping around and through it all, because the nerve trunk must be protected at any and all cost. Mother nature made sure our necks are super tough with lots of bone in the way.

I'm a great example. I was thrown out of a flipping car and hyperflexed my neck so hard that my ear was pretty much on my shoulder as I was flung out the window. I was conscious and remember the entire thing. My neck bent like a tree under a tornado hopping around. If you've never seen a solid tree bend in a wind wall, it's really freaky. Trees aren't metal poles, and they can take a bit of bending before they snap. Ice on branches is like that, too, you wouldn't dream a big branch could actually bend so far down and still be ok after the ice melts. Human necks are like that. They don't look like they could really be that bendy because our necks are so short, but mine bent like a spring board shredding all the soft tissues on one side, and how my neck never broke is anyone's guess.

Amusingly, I ran into this doozy just this morning. They still make it sound too easy. Most people aren't strong or practiced enough nowadays to pull this off.

After years of living with sometimes excruciating pain, I had whittled it down via loads of therapies to almost no pain and a whole lot more mobility. By then I had developed arthritis in my neck, both degenerative and stenosis, plus I had a couple of bulges showing up along the way, and about a year or so ago a hands on massage therapist even found a little cystic scar in the very worst spot that finally broke down enough for me to turn my head freely to the left without pain for the first time in years. Well, a lot of that pain is back now, and I can only think maybe being held in one position with airway was really hard on my neck. I'm having a super fibro flare with shooting pains going all over my scalp and down my shoulder, and my neck feels like it took a hard punch. I know this is nothing new and that time and patience and more therapies will help me work it out, but it's been very hard not being cranky, as you can imagine. I'm trying not to be short with people, but it's quite a challenge when all this pain is whinging around my head. One of my cranial nerves feels like it's getting electrical zaps every few seconds, and this has been going on for several days.

Thank goodness the surgery itself went spectacularly well, and I'm healing fast. The pain level in that area has gone down exponentially, and I'm looking back and can't believe how much pain I had been living with and how much it was affecting my overall health and my appearance.

What is tiny and green and hurting all over?

2017-11-28T13:03:00.000-06:00

I've been blogging most of the daily/weekly stuff on #pinkyblog, but since this one is 99% medical, it's going here.

I've had gallstones come and go for decades, sometimes they would just magically dissolve and then come back. I guess thank goodness for being autism spectrum with a fibro nerve disorder, because I was done dealing with the pain long before a rupture, even though I've been putting up with gallstone problems most of my life. I've regularly passed them, very used to that kind of pain, but this year was really different. I felt short of breath and heart racy with the least exertion that got worse over time, and the worst of the pain referred left, so I was checked for everything imaginable, including pancreatitis and aneurysm. I've seen the pathology report after surgery. I got lucky, my gallbladder wall was only .2 cm even after months of being chronic. My mucosa was still intact, but I was a ticking time bomb this year jammed so full of little rocks and scattered particles inflaming the hell outa the surrounding area.

From the abstract The degree of gallbladder wall thickness and its impact on outcomes after laparoscopic cholecystectomy.
"A greater degree of gallbladder wall thickness is associated with an increased risk of conversion, increased postoperative complications, and longer lengths of stay. Classifying patients according to degree of gallbladder wall thickness gives more accurate assessment of the risk of surgery, as well as potential outcomes."

I honestly cannot even imagine reaching the point of rupture. So many horror stories are coming at me now from all directions about complications that I'm wondering how some of you or your loved ones are still alive. One doctor once called me a canary in a coal mine, aware of my internal environment long before other people normally are, and another told me I'd probably outlive everyone I know just because I can feel every little thing inside me making me a nervous wreck.

Since I've lived with autoimmune flares and resulting treatment wreaking havoc on my immune system, I have a very healthy fear of infection going out of control. I'm not easy to treat because med intolerant, so I confine myself to what others fondly refer to as my bubble world. I still go out and run errands, but I'm super cautious about not ever letting anything touch my face until I get home and wash my hands really good. I've had allergic reactions to simply absentmindedly scratching my lip, and I pick up germs so fast just touching things that I'm usually the only one sick. I've mentioned picking up hand-foot-mouth just from resting my arms and hands on chair handles in a waiting room and not being mindful of touching my hands to my face. I had no other contact with anyone besides my husband for the two weeks prior, and he never got it.

One of my biggest fears is CMV reactivation, because I've been living with a liver condition most of my adult life and possibly even my entire life back to around 11 years old. I had a discussion with a liver specialist one year about aggressive mega supplementation for long periods that I was subjugated to as a child, and it's very possible my stomach bloat and belly pain goes back that far. My liver was already sensitive when I started drinking in my mid 20s and I'm pretty sure I went through liver toxicity after sudden alcohol withrawal about a year and a half later. I've been watched for liver tumors after a ten year stint with lupus meds, and then had a few discussions about autoimmune liver disease after initial CMV infection swelled me up for months, which could actually kill me very quickly if that ever happens. The last thing I want to do with my health is make life harder on my liver.

Most people don't even think about their livers and don't know they live with stenosis for years. I've been very aware since my late 20s because my liver almost never stops sending out referred pain signals, and apparently was able to feel the imminent explosion coming on. I can't tell you what a relief the surgery was after months of pain referring, and after the horror stories I'm hearing from friends and loved ones now about their own and others' experiences with gallbladder emergencies, I'm point blank saying stop blowing yours off before it gets to the point where your life STOPS for immediate emergency rescue after a rupture. That level of inflammation and infection isn't easy to get over and recover from once that happens. That ticking time bomb is snuggled right next to an organ you absolutely cannot live without.

Save the liver! I saw when this original skit first aired. If you cannot view this 3rd party embed, you can see Dan Akroyd's French Chef skit -here-.

I just discovered someone has autotuned Julia Child. 😂

that cheerful Howdy! hasta stop

2017-09-28T07:24:00.000-05:00

(copied from original post on #pinkyblog)

I have done my planning, my shopping, and yesterday initiated my original paleo / South Beach / Rosedale health plan combo diet. The only thing I purchased with Rosedale was the book (used, spent under $2), didn't buy anything else or take any supplements, and the rest I just studied online and did on my own.

Back around 2009 I had become desperate and bent my mind around putting together my own health care team. By 2011 I was cleaning off years of medications and lost 50 pounds in 4 months, but it took a lot of research on how diabetes actually works, how 'nutrition' is skewed into the wrong foods by big companies, how to survive without medications by actually paying attention to what I put into my own mouth. It's work paying attention and keeping track, but it's very easy with all the mandatory food labeling we have nowadays.

This is my public trail through healing.

pill phobia at its finest - coming out of the stupor of medication addictions, poor medication management, over prescribing

my problem with healthy food - challenging the healthy grains concept

Holidays With Diabetes- Easier than you think - An easy way to understand what the holidays do to diabetics

Diabetes and Steroid Meds - Surviving steroid treatment for other chronic illnesses and allergic reactions while maintaining control with diabetes

I've come a very long way since I wrote those articles. I've slipped off my own path a bit, regained a little weight, backslid into pain complications and medication problems, and now I'm very tired of 2017 dragging on like this. Time to get my control back.

Because I keep after continual physical therapies throughout the year, I am still not only maintaining function around my home, but keeping up with far more activity than I ever dreamed I could do. I still can't get on my knees at all without destroying them and have almost continual pain somewhere in my body during everything I do, including reclining and sitting, but it's manageable. However, I've lost my grip on that manageable part a few times this year, and I want it back. Part of losing that grip is because I'm slipping on my nutrition planning, and it doesn't take much for the diabetic headaches and slower healing and stomach problems and nerve pain to pop back in my door with a cheerful Howdy!

It's too easy to grab quick and starchy bites on the run because I have high energy young people in my house now. I must menu plan for MYSELF and stick to it. I work around food allergies, so I heavily depend on dairy for proteins, but some dairy has lactose and lately my glucose spiking is worse on lactose because of my new blood pressure pill. So, I bought an extra dozen eggs this week and boiled them up. One boiled egg a day will replace my second cup of coffee with creamer (canned milk).

I also bought bacon. Bacon gets a really bad rap when it's actually much better for you than cookies and cake and pie and spaghetti, especially when you're diabetic. It's easy to cook up a package of bacon and then keep it on hand in the fridge. When others grab a cupcake, I can grab a piece or two of bacon, and later I can use the bacon drippings to cook up a big load of pan roasted brussels sprouts, which are even more awesome with aged balsamic and grated parm.

Guys, I lost 50 pounds in 4 months one year without even trying just doing THAT and stopping when I reached 1500 calories. I could nibble all day and still dropped 5 bowling balls off. It never really hits home how much we carry around until you pick up a bowling ball and go wow, that was IN ME.

Anyway, I reached a point in 2011 where I felt like a skinny fat person, which was really fun for new clothes (got down to an 18), and I would really like to go past that now. I've been in size 20 jeans for awhile and if I'm going to be having difficulty with pain and possible falling (the klutz is becoming strong again), I'd like to be easier for others to help getting back up, knowhutImean? So I bought butter and bacon and eggs and cheese and brussels sprouts and broccoli and lettuce (I love lettuce wraps around chicken tenders!) and stuff like that, and let's see how the rest of the year goes.

I've been hovering just above 200 pounds for months, I wanna break through that. Can I do it? I've never lost weight on gabapentin before, plus I'm back on low dose xanax and still on daily zyrtec. In 2011 I was NOT on meds bossing my weight/water retention around, because I had spent 3 years cleaning off most of my meds and got into physical therapy. We'll see what happens. I do know that I gained weight this year on baclofen and higher doses of gabapentin, so the baclofen is gone and the gabapentin is back on very minimal pain control.

I. Want. This.

click for more fall gifs

when your spoons feel like 2-pronged BBQ forks

2017-07-27T06:52:00.000-05:00

Everything is *ow* and slo-mo while the world around feels spinny and objects magically go skidding miles across the floor into awkward places reserved for tiny limber toddlers. Walking is precarious, a grip on anything solid is laughable, and the only thing holding the pain-induced nausea at bay is the thought of some beautiful coffee just around the virtual bend. Everything will be fine once I get through the first 5 minutes of the daily morning spoonie hangover.

This is your brain on spinal spondylosis complicated with some stenosis, severe fibro, actual notated nerve damage in several areas, and a mysterious 'pain syndrome with psychological factors' for kicks. What the heck, lets toss in a load of every weed and grass pollen imaginable for the summer seasonal allergies thing and pretend it's not developing into a sinus infection with ear pain.

This year has been fun. Look at me, I'm hurtling down the long dip part on the roller coaster, wheeeeee. I have to keep reminding myself that I'm still more functional in many ways than I have been in the last ten years and I'm still at the advantage and have the upper hand on progress that I've made, but reality mocks with OH nonono *tsk* don't you dare forget what got you here in the first place, and then it looks at me like I got caught red-handed in the cookie jar.

My entire nervous system hurts and has been hurting like this for months. It's really rare for me to reach the nausea stage with pain because I am so used to living like this that it's almost just background lawn furniture, but last couple of weeks I'm this close to hurling just opening my eyeballs in the mornings. If I could describe this succinctly, I'd say this is as close to a full body migraine as it gets.

I am writing this down for posterity. I'm not in a whiny mood at all. I'm not feeling pissy or sad or worried. This is a good morning to write it because I'm actually impatient to get back onto the game server and go 'do something', which means I'm having to use actual brain to focus and not just dump.

Here comes super honesty. I'm glad this is happening. Before this crescendoed, I was in a depression rut for months last year. Even feeling much better than this, I was barely able to get past my daily basic chores because I kept face planting into lost time and ennui. This pain grind focuses me, forces me to cope and deal, challenges me to keep up. I like this me. I like that I'm actually keeping up and not face planting.

And since I'm getting to use my brain without the depression in the way (thank you, engaged pain receptors), I'm doing a better job lately with daily planning, list ticcing, lining up my thoughts about things to come kind of stuff. I feel like I'm balancing my days better, helping my family balance better. The last few months haven't been easy around here, and I feel like we're developing into a smooth machine. I like it.

Going forward. Five years ago around this time I was a nervous wreck coming back out public. Four years ago around this time I was a stress mess juggling 2 new grandbabies with a surgery and a huge server move corroding my work goals to powder. Three years ago around this time I was going through more histamine blowouts and on emergency steroid rescues again. Two years ago around this time I was plowing through years of emotional wall backup and processing with my psychologist. Last year around this time I was deep in a game server feeling lost. THIS YEAR- I'm on a self-appointed countdown now. I'm emotionally exhausted and numb and don't care any more about trepidations and what ifs and suddenly #allthethings falling into place and if I really do this, then the whole plan is just rolling itself out now because either I'm that great at pre-planning around unforeseen fails or I really don't give a crap any more and it's just going to happen. I'd say come hell or high water, but Missouri has flooded several times this year and my pain level has become too ridiculous to even describe, plus more people in my house and someone died next door OH I forgot, found out yesterday a kid up the street OD'd on heroin. 18, guys. I've far outlived an 18 year old, and I wouldn't trade all my pain and hardships for one single hit like that. I feel really bad for his family.

Anyway, yeah, that's my day today. My one spoon is a 2-pronged BBQ fork. Just dive outa my way and I won't have to jab anybody over a flaming grill.

Pinky sent me to my room until I can behave better

2017-06-05T16:46:00.000-05:00

One of the fun things I deal with is diabetes affecting fibro, like neuropathies on top of a nerve disorder, which ramps fibro up from the vague chronic to the immediately acute in very specific locations, and the best way I describe how it feels is like mini gout spread out in joints all over my body. I say mini because I'm not wailing and flailing, but definitely limping, easing, and grunting my way delicately around the house as an old sciatica flare suddenly ages me 30 years and every toe and finger joint feels broken and my elbows whine about every move I make with my arms.

That's the kind of stuff that gets me really smart. I dig around in the webs and learn stuff about purines and uric acid and medication side effects and how common a lot of this stuff really is.

Oh, baclofen, how ye stabbed myne backe. Heavenly addictive, cruelly mocking, and secretly cranking up the ol' glucose knob, which over time floods my body with trash that my kidneys can't move out fast enough. What a hilarious thing, right? A pain med that is heavenly actually jacking up my pain more horribly than it was in the first place.

This is nothing new. I've been here before, many times. Years of meds, years of weird pain reactions, years of peeling back off meds and recovering.

So how long does recovery take? Because I gots things to do. *looks at watch*

Priority is giving my body time to get the trash out without heaping more on. May was a jolly month and full of good food, and baclofen makes it soooo easy to join the fun. SO. Junk food stopped (ketone buildup) *check*. Stopped most of the animal protein (purine backlog) *check*. Exercise is mild and low key (uric acid buildup) *check*. All over hydration (taking out the trash) *check*. Joint pain less acute today than yesterday *check*. But this is obviously going to take a few more days. I used to joke about hitting my wall, well, I'm STUCK IN THE WALL. My body is all wtf how did we get in this wall?

I actually disagree with this pain chart. I'm not a smiley sort of person. I always look a bit 4-5 on the upper row. If I'm hitting a 9, I probably look kinda stabby because people sort of stand back a little.

My blood sugar is coming down a little. Random check on empty stomach today was 102. It needs to be hitting 86-92 range for optimal. That's when I feel really good and have energy. Doctors don't fuss over it until it goes over 126, by then it's affecting organs and you need meds or a very big lifestyle change to slow that down. If I'm hurting all over at a steady random of 107, that's a great big red flag. Took awhile to figure that out. Life grinds to a stop if I'm not controlling. Those of you laughing because it's not something like 140 and you're used to 160+, I'll share that I've clocked anxiety attacks at 140 glucose without fail and nasty headaches by 200. If you are having headaches and anxiety attacks AND you are diabetic and eating junk, I swear that can all stop.

But yeah, I hit that big anxiety out of a dead sleep couple nights ago, and that's when it really got through that the baclofen is no joke and maybe I need to decide just how much I'm willing to get wrecked back up in trade for freedom from a perceived pain level.

living with a med addiction

2017-06-04T02:50:00.000-05:00

This could have been miles longer, but I'm learning to cut it way down.

One month on baclofen, and having obvious issues with it. Latest issue is altered mood states, mostly super cranky, underlying issue I found out a few days ago is it raises blood glucose, which might explain the 15 point rise in my fasting glucose and the subsequent pain loop induced as neuropathies worsen with diabetes flares.

First dose was heavenly, but I could sure feel it wearing off, which I didn't realize was a red flag. Second dose (next day) less heavenly, sucked wearing off. Continued one dose per day for a week, which helped with the immediate problem in cervicocranial stiffness and pressure, and decided to half the dose. Wow, only one week on 10 mg a day and cutting to 5 mg was nuts. The next day I took 3/4 of the pill and did that for a couple weeks. Could tell this would be a problem and looked up the med specs.

So I'm a protracted withdrawal benzo patient who cleaned off 2 decades of regular low dose benzodiazaine (and all other meds) for 2 whole years, back on super low dose xanax in lieu of head meds backfiring, also now on low dose gabapentin for a year (higher doses were a nightmare), and now on low dose baclofen "as needed" (right, a script for 3x per day doesn't actually spell 'as needed'. So glad I never did more than once a day in retrospect). Basically, I'm on a cocktail of receptor meds that seem to be locking me back into addiction nightmare, and they're not playing around.

Add to this a swedish massage for neck, back, and shoulders, actually barely touching neck this time, and I'm waking up in panic attacks out of a sound sleep 2 days later, fibro reaction to hands on (even gently) plus med edginess from dosing down, can't even begin to describe what abruptly waking up like that is like. Adding a background of years ago car ejection survivor with unknown possible brain injury (around brain stem at that) and I can't tell if this is just med taper or an actual problem. I'm obviously typing just fine at 2 a.m., so I'm leaning toward protracted withdrawal rearing its ugly head. The crazy heart racing and panic (complete with weird numb and temperature change surges) absolutely would not calm until I got out of bed, got dressed, booted up my laptop, and started typing. Welcome to med addiction 101, where the internet in the wee hours is your best friend.

It's hard to prioritize like this, but seems to me the most recent med is the easiest to get back off, right? Looked up several sites with taper advice, and baclofen is looking worse than xanax, and xanax was hell enough the first go round. Check out this forum asking the question Can Baclofen reset benzodiazepine withdrawal symptoms? That's about the most eye opening thing you'll ever read about patients knowing their stuff. Using these kinds of forums was how I was able to clean off 2 decades of opiates and benzos. And if you don't understand all that big junk, lemme sift it down to *easy* for you- Always go real slow getting off your meds. And if at all possible, best to let your doctor know you're doing it.

I know there will come a point where I will need to stick with the big guns the rest of my life, but I prefer to hold out on that option until I'm actually crippling up and super miserable again. I can't believe I keep getting these big prescriptions for stuff that barely even shows up yet on scans, and actually more dangerous than simply just monitoring me on one receptor med like xanax. Being on 3 different ones while dealing with side effects on top of real life problems seems a bit exaggerating.

Anyway, boiled down, I clearly can't stay on a daily med pulling the ol' alt mood thing on me while it pumps my blood sugar out of my control, so here we go, time to deal with real. I will go back to bed now, fully clothed, knowing that this all calmed down and, aside from tight neck muscles, I'm fine. It's just my nervous system going crazy while my brain receptors readjust.

June promises to be a long month, which seems fitting since 2017 has been a great big grinder all along anyway. And when do I not glory in suffering? I really am at my best when life sucks harder than usual.

I started writing about medication addictions in 2008 on my Bluejacky blog, much of which is now private, so I've got 9 years of medication addiction personal blogging under my belt. So much is out there that I don't feel I need to add more, so I rarely bring it up nowadays. Tonight was courtesy of Pinky, who says it's important to keep integrating #allthethings. Tonight's post was brought to you by super spoonie aspienado.

sleep study fallout and consequences

2017-01-18T07:34:00.000-06:00

My apnea-hypopnea index was 17 (I was told that meant I woke up an average of 17 times an hour), and my desat was 78%, which is importantly not good and scary bad. Blood oxygen saturation ideally shouldn't fall below 80%, and if it does, it's considered critical. (Simplistically, I'm on my way to congestive heart failure if I don't correct this, if something else doesn't get me first.) During sleep study, according to the document I link in the next paragraph, 75-80% is considered moderate, and less than 75% is considered severe, so I'm kinda cutting that one close. (Ever wonder how people just die in their sleep? Now you know.)

How to Interpret Your Sleep Study That's a pdf document, so give it time to load, actually very cool with pictures and graphs of how it all goes down on the testing end.

I have 4 out of 6 qualifying CPAP symptoms- daytime sleepiness, hypertension, insomnia, and mood disorder. I've lived with all this for 2 decades. I've never yet had a stroke and never dx'd with heart disease, although both are prevalent in my mom's side of the family, and once that stuff hit my mom, she went down fairly quickly. I have been doing everything right- nutrition, exercising, med monitoring, excellent bloodwork and health according to everything I'm tested for. That means nothing if I'm not getting enough oxygen.

Last night I found myself ripping my mask off at first, but that stopped and I slept great after I lowered the humidity. This morning I'm sneezing and runny nose stuff like allergies, but apparently this is common and someone in comments said lowering the humidity even more helped, so I'm going to try that. I'm already on round the clock zyrtec with benadryl on standby, but we haven't started cedar pollen here in Mirkwood yet, so I need to figure this out before successive allergy seasons blow back up on me. Unless I actually have a real allergic reaction (and you know I'll be watching this), I think the O sat level coming back up is important enough to keep trying. At any rate, saline mist helped to dissipate that discomfort this morning.

Top 10 Ways To Solve Common CPAP Problems and Discomfort

Side note- I'm finding out that sleep apnea can happen in all ages and body types, and you don't have to be old and fat to 'get' it. I had a sleep study done 10 years ago that I wish they'd followed up on more rigorously, because even though they didn't see apnea, they did see brain rhythm lending to insomnia, which I was probably born with. I'm sure nearly ripping my head off ejecting from a vehicle crash didn't help anything, but for years I've lived with so much neck pain and weird sensations, including pain with swallowing, I can only wonder if part of my need for CPAP now is from an ongoing degeneration around the nerve injuries I acquired in that wreck. It's interesting that I barely weigh 5 pounds more than I did at the time of the first sleep study ten years ago, pretty sure 5 pounds wouldn't cause apnea on its own, especially since I'm currently 40 pounds down from highest weight. If you are holding back from looking at the possibility of a sleep apnea diagnosis because of stigma, you might literally be holding your life in your hands, so check into it if you're having symptoms.

wellness planning, fall back planning, and maintaining

2016-12-28T04:35:00.000-06:00

I also have a copy of this on Pinky blog because it's part of my 30 day challenge.

I've been wellness planning since 2008. I had reached what felt like a point of no return and felt desperate to find a way to claw my way back to life or die. I came up with an initial survival plan with 2 fall back plans. If you need context, I was in my 40s and already dependent on assistance with self care, thanks to several illnesses crossing paths and converging on me.

Plan A- clean off all my meds (except thyroid and blood pressure pills), get proper nutrition, hydration, and sleep, work on core strength, and regular exercise to regain mobility and function and reduce pain. This took several years of strict diet changes, devotion to physical therapies, and committing to healthier sleep patterns. I was med free (NSAIDS, narcotics, benzodiazines, muscle relaxers, and mood stabilizers) for two years, which is phenomenal after 2 decades of intractable crippling pain.

Plan B- get back on meds as needed when the pain gets too rough (knowing that once I'm back on them, I probably won't be getting back off any more) to help maintain mobility, function, and pain control through good health habits. I hit Plan B this year with gabapentin to control Lhermitte's pain shocks and low dose xanax to control euphoric episodes, both of which were interrupting my maintenance plan.

Plan C- when pain meds fail to help control pain and chronic problems progress beyond maintaining and I start losing ground again on mobility and function, then I'll start pain shots and surgeries, knowing that once these things start rolling, there is no going back to presurg conditions, and that I risk not only losing more mobility and function, but infection as well. Obviously, I want to put off the most drastic measures as long as possible, since these measures will basically be about interrupting nerve signals by damaging them as a method for pain control and will require extensive recovery therapies and assistance.

I was told today for the first time in 4 years that I didn't improve after the latest round of physical therapy. Medicare doesn't pay for physical therapy if there is no improvement, and I'm certainly not rich enough to pick up that tab, so I won't be able to use physical therapy to maintain this level of function, mobility, and strength.

For example, my grip in both hands has come up to 45, which is awesome considering left hand was in the 30s last year, but I'm not improving beyond 45 now. On this particular device, normal is 65. I assume that is calculated for sex and age (most grip devices are assigned their own number range based on average weak, normal, and strong grips for males and females across a range of ages). What we've been working on this last year is nerve recovery. My muscle tone is great, thanks to fibromyalgia keeping up isometric tension in my muscles, but nerves are what tell muscles how to move, right? You can have the strongest muscles in the world, but they're useless without healthy nerve conduction.

My nerve recovery at this point seems to have stalled. I know this can be deceptive, since nerve healing is some of the slowest cellular level healing in the body and can take years, especially if you have diabetes. However, I must consistently show that I'm gaining recovery, not just maintaining a new level that I've reached, even if that is the most important part. Without maintenance therapy, I might start losing ground again, and even though the therapists know this, their hands are tied by my ability to pay for services.

So, down to the real nitty gritty now. It's up to me to keep up this level of maintenance. I've got 4 years of training and tools to help me do this, and I MUST self motivate if I want to keep this amount of mobility, function, and strength that I've gained back over the last 4 years.

My therapy plan for 2017 is to assess back into physical therapy via doctor referral sometime around mid or late spring, see exactly where medicare rates me, see what medigap picks up, and then set up a payment plan. IF that is how it winds up going, I may have to stop and just take my chances. I know exactly what I'm facing because I saw my mom go down like this, losing both her arms, her balance, and eventually becoming side-deficit and needing round the clock care. My goal is to retain my ability to self care as long as possible. I was unable to self care for nearly 2 years of my life, so I already know what it's like to not be able to get my own shower, put my own clothes on, drive a car, or even walk through a store. To get this all back has been thrilling. I love that I can easily get around again, go buy my own food, tie shoes by myself, get up and down steps without a rail. Write a paragraph.

I've brought this stuff up before, but I don't like talking about it. It's important though, isn't it? It's important that I'm willing to work for what I can keep doing and be who I can while I have the time. It's very important that I'm not curling up in a ball letting the world crush me.

"If I cannot move heaven, I will raise hell." -Virgil, The Aeneid

Part of my 30 day challenge has been about assessing where I am right now cognitively, physically, and emotionally so I can project where I want to be this summer, or by this time next year. None of my improvement just happened, none of it magically came to pass. Every bit of it was thought out, planned, and executed. Some of it was fail or semi fail because I dropped the ball here and there, but I used those times to remember that I don't want to slide back into full time face plant. Lately, though, things have gotten harder, and if I'm being honest, I have to admit I dropped a pretty big ball staying on target with my goals this year, even if I did stay mostly on track with my health. I can blame depression, or I can own it. It's my choice. There is a difference, as subtle as that may feel sometimes. Examples might be caving to a chocolate binge but realizing I'm doing that and cutting down the portion, or caving to going back to bed but remembering I wanted to get a load of clothes folded out of the dryer and allowing myself to come back to bed after I get back up and get that done.

Small steps. A few little things add up to some very big things over time. What we do might seem mundane and repetitive, but it's also cumulative. You know how I clean house? I play a game. I have to move 5 things on a counter to new locations, and I can't cheat by just setting them someplace else. ONLY 5 things. I make myself stop. But I can come back later and move 5 more. If I don't feel like doing it and stop at 3 or 4, I can always say "but just one more and you can quit", and I do it. Over time, a whole lot of things get moved. In between the perpetual hamster wheels of doing dishes and laundry and cleaning bathrooms, real things do get done. And once in awhile I reach a place where suddenly doing 5 very big things is really easy because all the rest is done enough to make way.

I've had years where not much of anything got done. I know dearly what living with depression is like. Everything stops. Will power isn't even a concept, time is a dream I had once, and dots don't connect. It's like being lost and not being awake enough to want to find a way around. But even like that, I can still play a game. I can move 5 things. ONLY 5...

Over several years I have completely changed my life.

And that doesn't mean anything or make it any easier unless I do a 30 day challenge and think about where I am cognitively, physically, and emotionally right now, see what kind of progress I've made, and decide where I want to be this summer, or maybe by this time next year.