wizard level unlocked

I haven't been very bloggy over here, have I? But I do have a few things that need to be noted.

natural red light from a heat lamp bulb, not edited

First off, still have hair, yay! Went through a month over the summer where I lost a bit again, have a couple of kinda bare patches, but I think those were the roots resting and now there is new growth coming in there again. I just can't believe it's this long. I don't think it's been this long in over ten years. Again, diet change. Cannot express enough what a difference dropping carbs and adding more protein and some healthy fats has made. No other special anything at all because I'm allergic to everything- can't use product, no special vitamins or natural treatments. Growth starts on the inside.

That is also my real skin. too. No makeup at all (except penciled eyebrows, stopped growing eyebrows years ago), never mask or exfoliate, no cover ups of any kind, just the barest bit of Johnson's baby lotion because, again, I'm allergic to everything. Several years ago I had to be crashed off birth control (and then crashed off my thyroid med for a couple of months), and after I went through all that, a gyno specialist told me I'd start to see some aging now. I was on birth control for about 25 years, and controlled hormones have a lot to do with skin anti-aging or something. He's right, I've seen a little aging since then, but other people can't tell because I'm supposed to look older than this. I'm the only one in my family who's been able to tolerate birth control (we're all PCOS), but it wreaked havoc with my blood pressure and we finally just couldn't control it any more with meds. HOWEVER. My skin did not look this good until the last couple of years. It looked very unhealthy and gross because my overall health wasn't good, which leads to the next paragraph.

My diabetes is more controlled than it's ever been because I've become so used to naturally watching what I eat. (Remember, a doctor pulled me off meds because I'm so med intolerant.) My fasting glucose regularly ranges from 84-96 without even trying, but I still spike real bad if I eat the wrong stuff, so I can't just munch out willy nilly. Because my blood sugar stays in the normal range throughout the day (rarely goes over 140 on a snacky day, usually 130 tops after eating, and I know this because I test), I continue to have a much easier time with headaches, joint pains, and whatever viruses are going around than I used to in the old days when I was more miserable all the time. Also, I've noted on this blog what a huge difference keeping my blood sugar down has made on my anxiety, which in the past has been noted many times as "severe". All these things being so positively impacted by diet control means I can handle getting through every day with far less medication nowadays, which is awesome, despite what I'm about to write in the next paragraph.

My fibromyalgia has always been documented as "severe", but over this last year, several assessments during therapy programs have noted a strong fibrotic response (scarring throughout my tissues) that will probably need to be maintained regularly (deep tissue work to keep it microfissured as my muscles harden), several areas down both arms that had developed nerve entrapment (requiring deep soft tissue work), and "moderate" to "significant" localized arthritis in my spine (requiring more core strength and flexibility training). So far nothing terrible or immediately worrisome (although hella painful), but definitely will cripple me back up if I don't stay on it. When I first started therapies about 4 years ago and saw improvement, I thought each improvement would be another solid step up, but I'm finding out that reconditioning and healing aren't permanent unless they are regularly maintained. If I don't want to be crippled again, like I was from summer 2007 to summer 2014 (yes, that's how long I was descending and fighting my way back out of complete immobility), it's up to me to stay on top of being able to keep moving for the rest of my life. I know from hard experience that not a single one of the handfuls of meds they had me on for years stopped any of that, and I wound up having to get off all that stuff just to become functional again. I'm happy to say this last year has been my most functional ever since 2004.

Bringing up 2004 opens the door for cognitive assessment, because that was the year I went through brain fail and finally had to quit work and could barely handle going back to college for one semester afterward. I went from brainiac to ignoramous in a few short weeks, thanks to a viral infection that hit my nervous system and affected brain function. I lived with severe brain fog and memory problems for years afterward, but over this last year have started seeing remarkable improvement in capability and function. I still go through some brain fog and short term memory deficit when I'm tired, but considering how difficult it was to string sentences together into paragraphs and make a single blog post around this time 3 years ago (I really like that post, I'm glad I wrote it, took hours), I feel like I'm in the fast lane now, even though I haven't yet gotten back to what I was capable of before 2004. What I'm saying is, the sentences fly out on their own now. I don't have to think about it any more. I still make loads of typos, but after several paragraphs fly out of my fingers, I just laugh now.

The next bit is my favorite. I haven't gone autoimmune all year. I even got permission from my doctor to try to go autoimmune, really push myself and see if I could flare up, and even though I hit a few hard walls, it just never happened. I still have to be careful about autoimmune hyper response around things that trigger allergic reactions, but so far so good, best year I've had in a very long time. I have to wonder if a lot of that is keeping my diabetes controlled. My body is healthier, so it's not falling all over itself over responding to stress and fatigue.

The reason I started this particular blog was because I needed some place to write the truth about the person behind the other blogs, where I do way more fun and distracting writing. I needed a place to practice learning how to say the hard stuff without being a drag. Over time it became a blog of hope. You guys really would not believe how crippled and ugly I got for several years. It was so terribly depressing, and I really did believe I was going to die soon. You know what? I decided I'm not dying yet. I'm not DONE yet. I have more to do, more to say, more to see and hear and know. I'm very lucky that we have internet nowadays to help me find information and figure out how to apply it to my own life.

I know it's hard. I know you might not believe me. But I also know there's hope. If you are not willing to give up what's killing you, that's your business and your choice. It's not a sin to die naturally from old age and illness and just getting worn out. But in case you aren't done yet, go back through this blog and follow me out of your hell. If you want this, you can do this. You've gotta want it more than anything. You'll have very hard days (but when do we not?) and feel discouraged (we feel that anyway) and sometimes you'll backslide (that part is really eye opening for seeing how far you've really come), but one day you'll wake up and go Wo, how. did. I. get. here???  I can breathe again, I can bend again, I can smile at people again. I can THINK again. There are some wonderful moments waiting for you down the hard road.

We can do this, guys.

liking the pain

"You're gonna feel it."

Yeah, no, they weren't kidding. Neurological Exams: Sensory Nerves and Deep Tendon Reflexes

My arms are really bad. Super bad. I've lived with it so long that I don't even count my arms in a pain level assessment, so they've always been missed until now. If there were a word for severe carpal tunnel down both arms, that would be it. I ignore it because I can still force them to function, right? Arms aren't as important as migraines or invisible arrows stabbing my feet or walking doubled down over unidentified gut pain. And not every day is that bad, but I guess it's not cool to ignore pain until everything goes numb, except for the tingly prickly sensations. It's not numb at all, I'm finding out. One little tiny squeeze in the right spot made part of my hand ache for hours. I could barely hold my steering wheel or open a door just after a simple assessment.

Top on the priority list is finding out whether this is nerve entrapment, and if so, where does the entrapment lie? Entrapment is mostly a soft tissue problem and can sometimes be helped with vigorous deep tissue restructuring via micro shredding hardened fascia tissues around the muscles, allowing better blood flow while healing fascia grows in stretchier, all of this relieving pressure on whatever nerve runs through. This can happen clear back to the spinal column, so the deep tissue work I'm going through involves every inch from the palms of my hands all the way back to my spine beneath my skull down to my upper mid back and around my shoulder blades. We've done this before, but with different intentions.

If nerve entrapment is not identified, we'll be moving on to other experiments. My personal goal is to find out whether the pain and tissue hardening is ultimately an autoimmune response affecting my nervous system, since this seems to be a system-wide problem. I've definitely got the 'severe fibromyalgia' diagnosis from several doctors, but they still quibble over the autoimmune part, even though they automatically treat for it when it arises. I've yet to get a specific diagnosis beyond a generalized maybe lupus from a speckled ANA pattern and high SEDs, even though I've exhibited a number of outlying markers for autoimmune problems.

One of the next priorities if there is no specific identification for nerve entrapment will be more imaging to find out if there is nerve scarring. I already know there is a little bit and I've had some of it for a long time, but if it's not noticeably increasing, I'll probably just stay in the fibromyalgia category and keep working on maintaining the flexibility and mobility I've managed to gain back. So far I've been told there seems to be no degeneration in specific areas already checked, which is awesome, but doesn't mean there couldn't be over time. However, since I've spent most of my adult life with whatever this is and my condition and function are actually improving as long as I keep working on them, I don't expect to get much more in the way of answers, although I am hoping to rule out autoiummune complications from exercise.

I knew going into it this time I would have to buckle up for a deeper dive back into pain in order to learn more about it. I am in a LOT of pain, but I keep asking myself, Since when have I not been? I acclimate to a certain kind or level of pain and fuss when it increases a bit, but I'm learning to venture out into pain changes, and even pain stimulation as part of an assessment and problem solving tool.

Nerve pain is very sucky. There are plenty of forums and blogs filled to brimming with people describing pain, so I see no reason to go into that here. I have learned in this life that there is no horrible pain that can't be replaced or overridden by even more horrible pain. Everything about pain is perspective, and that perspective has everything to do with a mixture of chemicals washing around miles and miles of nerve tissues and the way both inner and outer environment affect it. Pain may not have a 'reason', but it is always real. The funny thing about 'real', though, is that a pain syndrome, while not an accurate perception, perhaps, might actually be quite a lot more painful to live with in some ways than simply dealing with 'actual' pain from a disruptive event.

I tell people it's not a contest. We all hurt because pain sucks. If pain stops or even if the pain level goes down, hooray! But some people know that the absence of pain isn't always the goal. The relief from pain is always high on the priority list, but sometimes the only way to get relief is to do more damage so that we simply can't feel it.

I live with what's lovingly called the suicide disease, and that is just one small part of a whole body that experiences never ending pain. I'm a pain pro. I've come to love and enjoy certain pain levels because it forces my brain to pump out unbelievable amounts of the kinds of chemicals people like to artificially induce to get high. When my pain level drops even slightly, I walk around high as a kite. It took a bit of training to learn how to do this, which means I voluntarily jump in and out of very rigorous physical therapies that over short term increase and stimulate pain while I learn how to control and even manipulate pain back down to lower levels. I use my body to get high. This might sound like I'm a pain freak, but since most of my medications either stopped working for me years ago or complicated into even worse health problems, using my own natural pain chemicals is actually a good idea, I think.

My physical therapy team is excited. The buzz about me behind my back is that it's bad and I still want more. I even go through it cheerfully. They're excited. This is what they trained for, someone who lets them go all the way without wimping out. Someone who says "Keep digging" when a tool is tearing little holes through tissue up and down their body. Someone who says "Cool" when a new sheet of homework full of new stretches and flexes and core reps is handed to them. Someone who likes the pain.

I feel like the Rambo of the physical therapy center. The only problem is, anyone could take me down in a second if they knew the right places to squeeze. You never see a neurologist or nerve therapist rise up in popular television saving the day with a quick dart of the hand to exactly the right spot, while weapons clatter to the ground and baddies goes to their knees. The whole arm twist behind the back thing? If you don't hit the right nerve spot on me, I'll kill you. Pain means nothing to me. Gently touch the sweet spot, I'm all yours, on the floor nearly blacking out. You're welcome.

I really love my neuro-techies. I had no idea how addicted I am to pain until I started working with them. I hurt like suck right now and I'm floating, not a single pain pill in my body. I'm almost euphoric.

THAT is the secret behind super villains. At least this one.

Afterthought- I'm not mocking pain. There are several kinds and levels of very specific pain I hope I never go through again, but I'm not holding my breath. Also, I've never experienced being burned in a fire or gunshot, although I have experienced several violent accidents and injuries, including a spectacularly nasty car wreck. Like I said, not a contest. Everyone's pain is a very intimate path down a dark road all alone, and it is through pain that we burn the chaff and find our gold. By the way, weeping alone in despair is part of the finding the gold part. It's a riddle that we find our strength through our weakest moments, just as we find our calm in the biggest storms.

I should be dancing

My physical therapy homework until I go back in a couple weeks to dive back into deep tissue therapy via aggressive ASTYM (basically, targeted micro-shredding to induce directed healing) is neural glides for my old friends (and yours), the median, radial, and ulnar nerve branches that run down the length of our arms. I knew my hands were hurting, but holy cow. And that was just the opener.

The goal going back in is simple- to experiment. Also to keep improving, but the reason my doctor approved MOAR is so a professional can observe how I trigger upper core flares (a wall I've kept hitting for years that we haven't broken through yet, resulting in 10-level pain and nasty headaches), figure out if she can fix that problem (deep tissue work, pinpointing problematic nerve dysfunction, if any), and if not, go back to my doctor during a flare and get the kind of bloodwork that would determine whether I'm actually stimulating autoimmune response (which would need medical treatment to control) or just kicking off a really badass fibro feedback flare that no one knows what to do with any more.

Quick review if you're new to me- I was told in my mid-20's before the word 'fibrositis' became medically fashionable (pre-fibro days) that I would wind up in a nursing home by my 40's because there is no cure. I watched my mother do exactly that (not as quickly as her 40's, thanks to pain pills and stuff), slowly paralyzing into severe 'frozen shoulders' and deficits until she was completely disabled. A few decades ago it wasn't uncommon to see older people's arms and hands curl up into hardened knots until they couldn't even hold something, mostly passed off as an arthritic condition. I got my first muscle contracture down my left arm during nursing school, but since I was learning all about contractures, I used my jeans pocket to hook a finger on while I'd casually stretch-flex my wrist to pull that muscle out without anyone noticing what I was doing, and over a couple of months the contracture eased up and disappeared. I only happened to notice it one day because I looked down and saw that, even though my arm was hanging straight down, my hand was cinched up crooked at my wrist. It didn't hurt at all at the time. If I hadn't know what it was, I'd have blown it off and it would've gotten worse.

Because of nursing school, I've been very aware of what's going on in my body over time and have been able to communicate well with people helping me with my medical difficulties. Most of my progress the last seven years is me making the decision that I want to be as functional as I can for as long as I can, no matter what the cost, even if I go through more pain doing it. I had nothing left to lose by the time I made that decision.

Today's assessment was one of the most validating I've ever been through. It's nice that a person can see from my history that I'm willing to do anything to improve, which means I'm actively willing to allow someone to cause me more pain in order to gain more control over the pain I live with. It took only seconds for her to determine I'm left-side weak and severely right-side nerve responsive. (Those few seconds made it really hard to make a quick stop at Target and then drive home, my arms felt so rough. She used the same moves Steven Seagal uses on perps, only more nicely.) The next steps will be to explore if and where I might have nerve entrapment and whether upper core strengthening will have anything to do with pain control or just keep making it worse.

If you need context, one of the questions was whether pain keeps me from reading books. YES. I cannot hold a book. I must use a table to hold the book or read from my laptop screen. Years of dropping things. No one really knows the love that goes into preparing meals when one can barely use their arms and fakes their way through it all pretending nothing is wrong. And, like I said, my hands are just the first step in the door.

A doctor told me one year I perfectly described ankylosing spondilitis, but there's no visible sign of it. Another doctor is convinced I had a Lyme event (I tested positive), but there is nothing anyone can do about it decades later. Another doctor kept checking me for multiple sclerosis. About 18 months or so ago, an ER doctor made sure I didn't have lupus involvement in my brain. I've been cleared for tumors, aneurysms, strokes, spinal fluid problems, and brain cancer so many times I've lost count.

Fibromyalgia isn't supposed to be progressive or a true inflammatory disease, 'just' a disorder (or two, or three) that isn't supposed to affect overall mortality. The incongruity of being comforted by someone saying "Well, at least it isn't killing you" when they have no answers is like telling someone who lost a limb in an accident "At least you didn't lose your life"- No, but you lost function, to which they reply Ah, but not really lose function, like a true progressive condition, to which I reply, Ah, but lost quality of life. I've lost so much more than a person who's lost a limb.

When every move a person makes every single hour of every single day of every single week of every single month of every single year for decades is based on a unfortunately misinterpreted nervous system signal during an unapologetically long and miserable existence, one might question whether existence is even necessary, much less the kindness and charity we're supposed to develop along with it. Because, and I don't know about you guys, I feel like plowing through a placid crowd of movie goers like Ash with his chainsaw on most days. The argument over whether the pain is 'real' or not is ridiculously beside the point. Here, step into my body for a few minutes...

So when a physical therapist actually looks thrilled that I'm clearly begging her to hurt me even more so that she can do her job better, and she can tell that I'll actually be an enthusiastic compliant cooperative patient instead of the usual crabby drudge that drops out before they get anywhere because 'it hurts', I know I've made someone's day. It was like handing her chocolate cake and tickets to a Halloween screamfest or something. All grins. I think she's going to be my favorite.

Yes, IT HURTS. But every single day of my life HURTS, and every single thing I do HURTS, so why not explore just how far I can go with this? It's going to hurt anyway, for crying out loud.

This is my head when I find people who are willing to go into my pain with me and help me find ways to keep living with it, ways to control it, and even ways to improve it. Yes, it takes years and the kind of determination that makes regular people quail and cringe, but until the day I die, I want this to be me in my head.

Hugs to anyone reading this who hurts. We can do this. Especially in our heads.

needle day

My turn for needle day. This week so far I've watched two friends on twitter/facebook go through big neck stuff (awesome needle in the ol' spine pic *thumbs up*), so mine is little tiny stuff by comparison. However, instead of turning pain OFF, we'll be doing a nerve conduction study and turning pain ON. I have no idea if we'll be doing both legs or just one, the goal being to discover exactly why I get the stabbing pains in my left foot for weeks after I trigger my L5S1 compression by lifting Bunny from any position, both sitting and standing.

Detection of lumbosacral nerve root compression with a novel composite nerve conduction measurement.
"This preliminary study suggests that a novel composite nerve conduction measurement, based on F-wave latency parameters, may be highly effective at detecting magnetic resonance imaging-confirmed lumbosacral nerve root compression. Because these measurements provide objective evidence of functional nerve root compromise and are noninvasive, they may be of diagnostic value to clinicians evaluating patients presenting with low back and leg pain."

Can EMG/Nerve tests diffferentiate between cord compression and nerve root compression???
"The EMG's can isolate if it is a root or the cord. The cord most times would be a bilateral affect, where as a root of course only one side."

I'm planning on taking it easy for a few days afterward since fibro is a nerve condition.
more pain since EMG and Nerve conduction
"I had pain after the EMG and swear I still feel the 2" needle probe they were trying to get in my shin. I'm sorry to hear you're having pain still. I've tried massage blocking the signals and it's seem to have helped. Please call your Neurologist to follow up. I wish I could help more. Thinking of you. Take care. Charry"

I'm married to a guy who faints dead away just giving blood and swears he'd rather die than go any further than that with a needle because he'd go into convulsions or something. While I'm not actually looking forward to it, I've come to realize after so many years of pain that I kind of like it. That realization was a little disturbing at first, wasn't sure how to feel about that since I purposely and very conscientiously avoid self harming. I've noticed during deep tissue work weeks in physical therapy that I sometimes come away almost too delirious to drive because I'm so high right after my pain threshold has been lowered, which is weird since I don't medicate, but I discovered how natural spinal opioids and receptors work, so I imagine that's it in a nutshell. I tend not to notice 'real' pain, where I really have a broken bone or someone points out that I'm bleeding, because I'm so overwhelmed all the time with what I call 'ghost' pain. (Pain charts are ridiculous contraptions for those of us with pain syndromes.)

I've been through nerve conduction studies before on my arms, they suck, and I'm sure I'll be pretty pissy for awhile after I've had needles in my legs and feet pinging nerves on purpose. Anyone who has never had deep throbbing nerve pain hasn't LIVED. You cannot comprehend how absolutely beautiful life is with a lower pain level until you've been tortured on purpose for a medical study.

I'm not a pain advocate. I don't think it's wise to self harm, especially with MRSA and VRSA and other big germ baddies on the loose all around us, and much more prevalent than most people realize. HIV is nothing compared to those.

By the way, if thoughts of torturing someone for science excites you, there's a career field for that.


:edit: Imagine the SpongeBob narrator saying "Two hours later."
So far, so good. No mutating into an alien life form, nothing disturbing the Force, just a great baseline for if/when any of the pain changes/gets worse. They can only do so much with "We don't see any damage."
So for all I know, that nasty weird nerve pain might never have been a problem for someone without a fibro feedback loop amping up to Zaphod Beeblebrox levels of weirdness. I'm not bitter, though. Some people wanna see returns on their suffering, they want proof, and I'm all HELL no, do ~*not*~ give me proof. I don't care who says what about it's all in my mind (that's a real thing that is finally turning into Oh yeah, now we can see part of what's causing the feedback probs in fibro research). I'd much rather no one believe me and think I'm a hypochondriac wanting negative attention to feed my psychosis than have real, actual damage. Besides, this is standardized across the board testing for a very specific determination, not a validation of whether something actually happened.
Some people go deep into rock aura magnetic energy stuff, others go into pandimensional reasons for our sufferings that involve quantum physics and dark matter (srsly, not kidding), I'm just all Tell me how I'm moving wrong and I'll take it from there. Because that's a real thing that can be corrected. I think the greatest change we can make in health care is for insurance to pay for weekly massages for everyone.
This was on the wall there. I thought it was pretty clever.