sparkly

Not sure wazzup, maddening twitching all over my face today for several hours now. I think a lot of it is optic nerve overload/response, awfully bright out this morning, inside of my house almost glows because the walls are so light colored. Also might partly be related to most of my neck, face, and head feeling numbish all day yesterday.

When this first happened a couple of years ago I couldn't tell where it started, now I can tell it starts with a spot in my neck where ASTYM therapists discovered a hard capsule of scar tissue in between a couple of cervical processes and worked it down over a couple of weeks making sure I could rotate freely without a catch there anymore when I look to my left. I'd lived with it so long that I couldn't even imagine it not being there.

Anyway, it seems to be a little more sensitive again lately, and I think it's because I'm transitioning to Jawn. It's a very slim lappy and not sitting on a cooling table, so I'm sitting more above it with my arms more down. I've also had to readjust the display a few times so I can read the screen, kept catching myself jutting my face forward to see better and that's hell on necks.

So I'm not sure if what I'm feeling is nerve being less tortured now, or more tortured. I've had to stop a lot more again and work on nerve glides and just plain rest. Can tell driving and carrying groceries this week didn't help at all, although the pain level hasn't been too horrible. Numbness is a freakish thing to feel, and very hard to tell if it's better than pain or if it means a nerve is shutting down instead of coming back online running diagnostics (they really do that, I've been through loads of nerve healing), and all this twitching today is very distracting. My main solace is that I can still feel the roof of my mouth just fine. I'm used to not feeling about half my sinus, not sure that particular nerve damage will ever come back online, and is probably part of the reason I let allergies and colds and stuff get so bad before I do anything about them.

Whatever is going on, my whole face feels like it's percolating, like all the little nerve tips all over my skin are pinging around like little raindrops or something, kind of the way it feels when the numby shot from the dentist starts wearing off.

We're also noticing I've been a bit more snarky-crabby last couple of days. I remember I used to get like this at the tail end of ten-day antibiotics. Ug.

Just needed to write it down and get it out of my head so I can keep focusing on other things.

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.

middle of the night chronic spoonie lurker jackpot

Pix click out to other sites and sources. Some amusingly have nothing to do with what we're talking about.

I was very ill for about a year before I finally felt desperate enough to seek out medical help. I'd lost 75 pounds and hurt profusely all over, and felt like my spine was being microwaved, as if the spinal cord must have a fever. My first doctor was an ancient country doctor on the brink of retirement. My bloodwork inspired him to let me know I would be in a nursing home by 40, and that there was nothing that could be done. Then he prescribed the biggest jar of aspirin I ever saw in my life and told me to take it every day. About a couple of weeks into the aspirin I went through a full week of hallucinating and 'visions' and should probably have been in a hospital. I never went back to that doctor, and stopped the aspirin. I was in my mid 20s.

A few months after that I dragged myself into a city clinic and saw a real rheumatologist. He asked why I was there. I told him I thought I might have lupus. He asked me ten questions, and I said yes to all ten, including losing my hair, which was noticeable to my family. Without ordering a single blood test, he laughed and told me I don't look sick, and said I was skipping down a rosy little path to a psychiatric illness. I dragged back out to my car and sat there crying for almost an hour. Note- several years later, a doctor sent me back to that same rheumatologist who was now in an even bigger clinic, and after touching my rock hard shoulders exclaimed that I had the worst fibromayalgia he'd ever seen and demanded to know why I wasn't being treated for it.

I was too devastated to try again for another year, until I finally couldn't take it any more. It was a horrible time for single parents on medicaid, no clinic I called would take me. I finally drove back to the city to a clinic I hadn't called yet and dragged from office to office asking if someone could please see me. Finally, on the third floor, one doctor said yes and saw me that day.

From Fibromyalgia- University of Maryland Medical Center
"Fibromyalgia can be difficult to diagnose. It can take 5 years for the average person with the condition to finally get a diagnosis. As many as three out of every four people with fibromyalgia remain undiagnosed."
I was fast tracked to rheum and diagnosed within a week.

From Do I have lupus or fibromyalgia?- Fibromyalgia Information Foundation
"As many of the symptoms of fibromyalgia are similar to those experienced by lupus patients, there is a natural concern that the symptoms of a fibromyalgia flare could be the underlying lupus picking up steam. Ultimately, the treating physician has to make a call on these increased symptoms. In general, lupus patients who are undergoing a flare have other findings; such as evidence of true arthritis (usually with joint swelling), skin rashes, sores in their mouth, fever, hair fall or evidence of specific organ disease such as pleurisy or microscopic amounts of blood and protein in the urine. Furthermore, in active lupus, blood tests such as the sedimentation rate often become elevated, the white count (particularly the lymphocyte subset) becomes depressed and there is often an increase in the level of anti-DNA antibodies. None of these findings are a feature of fibromyalgia -- thus the distinction between a flare of fibromyalgia and a flare of lupus should not be too difficult if the problem is approached systematically."
I was also dx'd simultaneously and treated immediately for lupus based on positive ANA and high SEDs which refused to come down for several years even on meds. Medicaid wasn't paying for a new drug called Ansaid, so my doctor kept me on samples for five months. I credit him with saving my life. He also dx'd me with Hashimoto's (autoimmune thyroid) about a year later, based on radioactive iodine uptake.

My SEDs hovered between 75 and 100 for several years. I felt like my bones had been crushed and nothing touched the pain, but the Ansaid kept me functioning enough to work on my college degree.

In the years since, photosensitivity called polymorphic light eruption (PLE) was confirmed by a dermatologist, a liver condition called NASH was confirmed by an endocrinologist, and I underwent heart surgery at 38 to correct a rhythm problem that started in high school after I had measles, which I just lived with until it became unbearable. During my worst year I went through nerve fail which caused such severe dry eye (I still make only 3% moisture in one eye, confirmed by an opthamolagist) and dry mouth that I developed cavities all over my mouth. My dentist was thrilled when the moisture finally came back on, and I have had only one cavity in the years since.

I'm also positive for lyme, esptein-barr, bartonella, and CMV, plus I had the measles in high school. What doesn't kill you doesn't always make you stronger. Sometimes it makes you a puny sickie.

Why am I saying all this? Because I still have doctors asking Are you sure it's lupus? (Yeah, they're asking me.) I've never been hospitalized and managed to fake my way through 15 months on a desk job (my last job after years of more laborious jobs) without missing a day before I finally fell apart because when I was growing up, we never went to doctors. I grew up on a farm working like a dog since I was very young, pushing animals 4-8 times my size around regularly, and using my hands so hard that I'd developed carpal tunnel by the time I was in high school (recently confirmed as 'severe' by a neurologist). Then I went on to survive being thrown out of a car crash without any pain meds at all. After living with nasty trigeminal pain from damage for years, a neurologist finally dx'd me with trigeminal neuralgia.

I've come through a whole lot of thick and thin, have been through several epic health crashes, but what started turning it all around was 1- finally being dx'd with diabetes and changing my diet, and 2- slowly weaning off the handfuls of meds that kept me 'drunk' for years. AFTER THESE TWO THINGS, my liver tests finally went back into a normal range. I had elevated liver enzymes for two decades until I changed those two things. One year my liver was so sick that my doctor wanted to test me for autoimmune liver disease, but I felt too rotten to go through a long needle penetration. I still get symptoms once in awhile, so maybe I do, but it sucks so I avoid flaring it as much as possible.

Ever since I made these changes, which have taken several years (four years since the diet changes, seven years since I first started weaning off meds one by one under doctor supervision), my health has slowly but steadily improved. I have come back from being convinced death was close (using a cane and sometimes a transport chair and daily advair just to be able to breathe, and needing help dressing and bathing), to living a pretty normal life in my own home now. I still have mini flares, I still get SED spikes once in awhile, but for the most part nearly everything in my body is improving as I age after years of immobility and misery.

I still look around for tips and advice from other spoonies on rough weeks, and what I call my rough weeks are still spectacularly rough compared to non-spoonies, but to me now, they're a vast improvement over rough years.

I wrote this down in one place to give other people hope. There really is hope.

If you are a very sick and puny person and are still drinking soda pop and smoking cigarettes, you cannot get better until you stop that.

If you are a fatigued scatterbrain who enjoys a little too much pasta and dessert, you cannot get more energy until you stop that.

If you are overworked and eating salads and and torturing yourself to 'be healthy', you cannot feel healthy until you stop that. Get some real rest and more protein in your diet.

If you are buying extra makeup and putting more chemicals in your hair trying not to look bad, stop that and take a step back- do a real self assessment, prioritize some goals, make a PLAN, and spend the next 2-5 years implementing. It took you years to go to pot, it'll take a few years to come back from that.

I am a workaholic. I'm also an alcoholic (20 years dry now), a very heavy smoker (3 packs a day, 25 years off now), a codeine-benzo-caffeine addict (never cold turkey off benzos, guys, it sucks and it's dangerous, and guess how I know that), a chocoholic (a severe nut allergy popping up cures that real quick, read a few labels and laugh with me about how most of the chocolate in the world is processed in facilities also processing nuts), a sweets junkie (I'm an artist with decadent baking), ok you get the point. All that stuff piles up. And once you've overloaded, it takes years to undo damage to your immune system, your liver and kidneys, your eyes, even your brain. You can't take ginseng and improve your brain power and still do all this stuff.

There are people out there who do everything right and don't get better. Hugs to you guys, I've watched a few friends go down and I know it's really hard. There are other people out there who do everything wrong and live long lives without ever getting sick or cancer. High five on you guys, good on your magic DNA. Trade me bodies sometime. And don't gloat or feel better than other people because we all know it was the luck of the draw, and it's not like you got to pick your body before you were born.

It's not your fault. Yes, we have science and medicine now, yes, you know better than to be ingesting things and not exercising and whatnot, but just because we know this stuff doesn't mean it's your fault. 300 years ago, people died all the time and no one knew why (unless it was murder or some crazy accident). Now we know why, and basically it really is the luck of the draw- you are stuck with the DNA you were born with. Some people are prone to cancers, some prone to diabetes, some prone to autoimmune problems, whatever. You were born that way.

True story. My husband's granny lived to 102 with full blown diabetes. She avoided stuff that spiked her blood sugar. Her daughter (my husband's mother) eats bags of candy and to this day in her 80s remains completely free of diabetes. Eating sugar doesn't cause diabetes, but it will make you very sick if you have diabetes. My husband has been hovering on the brink of 'pre-diabetes' (that's such a joke, just call it what it is) for years because he's a hard worker and manages to keep his fasting glucose low enough to keep the doctor hesitating, even though he carb loads like crazy sometimes. When he does that, his heart races, and we know there is some damage going on at the cellular level, but he thinks he can get away with cheating. He's never yet been treated and he doesn't count carbs, he just works really hard.

On the other hand, I come from everyone going diabetic on my mom's side, lots of strokes and vascular disease kind of stuff, and she didn't make it to 70. I watched diabetes destroy her. She suddenly started wasting away and I thought she had cancer. She said she never felt better in her life. I don't know if that was true, because I also know her feet started going numb, and it took her months to recover properly after a simple gall bladder surgery.

I was going down way faster than my mom. Way faster. Now I'm doing much better at this age than she did. Way better.

I just want to let you guys know there really is hope, but you are the one who has to decide whether to make it possible. Whatever your diagnosis, whether they're missing something or not, even if it feels dire, you can make decisions that change how you feel down the road. Where do you want to be in five years? Make a list. Fewer headaches, maybe. Heartburn gone for good. Bladder control. Less brain fog. A little more energy. You might surprise yourself if you make a decision and stick to it. Just 5 years ago I was using a motor cart to buy groceries. Now I trot all over Walmart.

Little steps over several years add up to really big changes.

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.

TMI time, but you'll thank me

You know your physical therapy on lower back pain is working when sex pain dramatically decreases.

Sex and Low Back Pain
Best and Worst Sex Positions for Back Pain

I've been in and out of physical therapy for low back pain for a couple of years, and this round is more fine tuning specific weak spots because I started getting shooting nerve pain down to my foot several months ago, on top of a few other new pains. It wasn't exactly back to the drawing board, but I'm evidently still doing something that triggers enough extra nerve compression at L5S1 that it felt like everything suddenly got way worse. Well, they say it's a little worse, but still manageable, and the two big things I'm working on now are being aware of what I'm doing so I avoid the trigger movements (no more picking up little kids, basically) and tightening up my core strength around the muscle areas allowing the compression to worsen. Some people have more damage than me and less pain, others have less damage and more pain, so low back pain is a very individual experience.

I bet a lot of you didn't know that sex pain can be caused by nerve compression in the lower back. Even if you have no other back or leg pain, whatever position or movements you're doing could be all it takes, and wham, it feels like someone ripped a new hole or a stab goes down your leg, or suddenly your hip locks up and you're beating out a charley horse in your glut.

When my lower back first flared back up again, I couldn't tell it was my back. I had nasty pain all around my pelvis and it kept feeling like I had a terrible bladder infection. Over time I've been checked and cleared for several things, including cancers and tumors. Nothing was ever wrong. It wasn't until I went to physical therapy and started core strength training that I could tell (feel) it actually started in my back. The nerve compression made that spot in my back feel numb. I could tell, though, that simple things like sitting or standing too long made all the other pain worse, and I had to learn all over how to properly stretch, move, and even walk.

Part of all that was sex pain, and it got pretty excruciating off and on. I could never tell when it would be bad, and it would hit so hard and fast in the middle of it that I'd double up in pain. I blamed it on aging, a mild cystocele that my gyno assured me wasn't a problem, hormones, fibromyalgia- but it always gets better with physical therapy for my lower back.

The L5S1 is the most common site for lower back pain because that joint connection takes the most weight, and the nerve there branches out in such a way that all kinds of weird sensations or pain or numbness can travel around in the oddest ways, even if you still seem to be fully functional and capable.

Describing a new syndrome in L5-S1 disc herniation: Sexual and sphincter dysfunction without pain and muscle weakness (click)

"A syndrome in L5-S1 disc herniation with sexual and sphincter dysfunction without pain and muscle weakness was noted. We think that it is crucial for neurosurgeons to early realise that paralysis of the sphincter and sexual dysfunction are possible in patients with lumbar L5-S1 disc disease."

That basically means that sex pain and/or dysfunction might be a first warning sign of disc degeneration years ahead of disc damage showing up on x-rays or MRI. This goes for both men and women.

I can tell you from experience that pain meds and sitting around on a couch do NOT make this any better, even if the pain lessens. The only thing that has genuinely improved this kind of pain for me is core stretches and exercises specifically designed to strengthen the muscles that support the spine. (That is why it's called core.)

Even if you normally don't work out and hate exercise, you will love core if you spend a little time getting through the tough first day or week, and after that it becomes the tough first few minutes, and over time your body will almost beg you to do something core. Like hang a leg off a bed a certain way. I didn't know that was a core stretch that can relieve pressure right there on that spot, and after I've done the core stuff, which takes about 15-20 minutes if I do everything I'm told, the pain lessens quite dramatically, especially now that I've been using physical therapy somewhat regularly to control my pain. No pills I ever took made the pain lighten up like that, and I've taken handfuls of gigantic and very colorful pills in my life. I was even crippled for a couple of years because the pain was so bad. My worst year I thought I'd never be able to dress myself again.

Or have sex.

I'm having sex, guys.

The Darker Side of the Force- Sith Lords and Carpal Tunnel

I think the reason the Force was invented was because of carpal tunnel. Everyone keeps dropping their weapons at inopportune times, just easier to will stuff to fly off a wall than hang on to your lightsaber. The worse your carpal tunnel, the more powerful you become in the Force.

My challenge is eggs. Well, anything smooth and curved that I can't hook a finger on or scoop from underneath well or catch on an angle. But eggs got so bad I stopped eating them. I know what you're thinking, all I have to do is just turn my arm over and cradle the egg till I get to where I'm going with it. BUT, first you have to grip it in order to get it to turn with your hand as your arm turns over... I have dropped so many eggs. It got so bad that I learned not to stoop and clean it up because I'd drop the next one, as well, may as well clean up two at the same time. Or three, you get the picture. Got the bright idea to grab the carton to carry over, dropped the carton, most of the eggs smashed. Use the two-hand-gentle-hug-to-the-chest method and then drop it at the destination. Some days it looks a little spectacular, like I'm tossing them around on purpose. Solution? Don't eat eggs.

Click for more fun stuff

Yesterday I learned all about a cool torture called needle EMG testing for if I ever snap and lash out on the world, except I got to learn it the hard way with the needles stuck into me. If you'd like to learn how to torture, as well, here's an intro. Some people make really good money doing this. After a bit of questioning, it became clear to the neurologist that my labor-intensive childhood probably ruined (my word) my hands, because I've spent my entire adult life dropping/throwing things. Years of milking goats by hand (yes, I'm serious), helping move hay bails, holding heavy animals still (imagine your children tangling with animals 4X their size or weight), and hand cranking meat grinders (I beat you all at 'organic living'), plucking mountains of chickens and pitting gallons of cherries, shucking rows and rows of corn and peas- my hands ache just remembering this stuff.

Click for cool behind the scenes info

I watch the Food Network for chuckles. I like seeing professionals sweat and freak out in Kitchen Stadium and noobs fall to pieces in competition shows.

Free plug, check it out

Fave SW comic routine ever. (language caution)


Actually went in for my left elbow, which turned out to be, laughably, nothing compared to what I didn't know about my right hand. Never mind that I've been living with every single symptom of carpal tunnel for years now, to the point of not being able to sign checks or tie shoes during part of my 40s. I'm being extremely serious, I literally could not turn door knobs or keys or can openers or even make a pony tail. Never once dawned on me that was carpal tunnel because I've had so much other nerve stuff going on all over my body anyway that I thought it was all part of the same thing. Apparently not. I thought I've been using my hands much better nowadays, can do all kinds of stuff now, so I was very surprised how quickly I crumbled when we started on my right hand. By crumble I mean uncontrollable weeping. (@bonenado would have fainted.) I barely had the power to point my index finger while that needle was poking in my muscle, pushing back was nearly impossible, like all my strength went super fail. I may have broken and confessed a few of my lesser crimes, but I never once slugged the neurologist, as badly as I wanted to. I asked him if anyone had ever hit him, which probably wound up in his notes...

Click for instructional video

(If you clicked and watched that video and want to see more, here you go.)

Solution for left elbow- stop picking Bunny up, because I keep super fibro flaring around the joint.

Solution for hand(s), YES, HANDSSSS, more surgeries any time I decide I'm ready for them. You know what this means? I'm up to four surgeries now any time I want them. My jaw dropped, b@*#k that. In the meantime, I have been commanded to REST MY HANDS. This means I'll be practicing surprise levitation on random people using only the power of my mind.

I hope to one day recruit an assistant to handle the lesser duties of my Dark Side while I continue to hone my Force choking skillz. In the meantime, every day I'm keyboarding.