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Tuesday, December 29, 2015

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.

Tuesday, October 27, 2015

liking the pain

"You're gonna feel it."

Yeah, no, they weren't kiddingNeurological 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.

Friday, October 16, 2015

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.

Wednesday, September 23, 2015

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.



latex, latex all around

Yesterday.

Assessed out of PT 3 days early because progress on referral area has been so fantastic.

Unfortunate accidental latex exposure while I was there. (Stretchy band stuff, touched by someone who'd had their hands all over them.) Thank goodness for the extra benadryl and emergency pred stash I carry around in my epi-purse, because...

First time I was ever turned away during allergic response from an open clinic that had an urgent care sign because they purportedly had no provider in the building and didn't even offer triage. Wound up driving 20 miles over to another urgent care. Hey, this is how we roll in the Ozarks. By the way, first hour self treating (thank goodness for experience) is kinda tense in stupid traffic.

Traffic ironies galore- the one day I need speed and smooth sailing is the day I can't turn left against a funeral with 40 cars going by, the day I get caught behind two tar trucks bottlenecking a major highway, the day I wind up behind a very loaded tree trimmer navigating a busy intersection during a lunch rush, and then wind up behind the most careful older person in a big luxury car ever slowing down to 20 mph on a street there's no way I can pass on. If airway had blown up, even 9-1-1 would've taken forever to get to me, sooooo glad I carry pred everywhere I go.

It all starts innocently enough, people don't think about something they touch transferring to everything else they touch and then handing things off to people, like printouts with notes all over them. Then all it takes is a little itch around my nose and mouth during one of the biggest histamine months of the year (ragweed and cottonwood) to rub latex dust on my face because I didn't wash my hands after PT (using alcohol doesn't 'kill' latex, it's not a germ), and the next couple of hours turn into lip and tongue puffing up, roof of my mouth puffing up, barely being able to swallow even just a drink of water much less the cheese stick I brought for lunch (choked solid on a cheese stick), and my chest feeling like it's super taped up and I can't get a breath in properly.

I'd already had zyrtec with my breakfast, but that barely even keeps ragweed reaction under control. I took benadryl before I went into PT because I always take benadryl going into buildings around other people, just in case. I took more benadryl over the first reaction hour once I noticed it happening, only so much benadryl you can take. Got the pred down and spent another ridiculous hour getting myself to medical assistance just in case.

So this week I'm on my second pred burst in 3 months over latex, hafta spend my week avoiding carbs and glucose testing all day long, is it any wonder I'm a hermit and hate leaving my house.

The following links click to more very useful information. Please visit these sites if you think you might have problems with latex.

Latex allergy advice- Australasian Society of Clinical Immunology and Allergy
"No treatments are yet available to cure natural rubber latex allergy. The best 'treatment' is to avoid exposure to latex. Medications are available to temporarily alleviate symptoms... You need to avoid all latex products. The biggest risk comes from contact with rubber gloves, not just in the medical or dental setting. Balloons, household gloves, gardening gloves, many adhesives and condoms can cause a severe reaction if you use them.

Please tell your doctor or dentist about your 'latex allergic status' when asked about 'drug allergy'. Remember to inform anyone else likely to perform a procedure on you (even your hairdresser!). Wear a 'medic alert' disc and carry a letter of explanation from your allergy specialist.
Have a first aid kit available. Epipen is a safe and easy form of self injectable adrenaline, but remember to keep a check on the expiry date."

Latex allergy- Mayo Clinic
Note- "Latex allergy also is related to certain foods, such as avocados, bananas, chestnuts, kiwis and passion fruits. These foods contain some of the same allergens found in latex. If you're allergic to latex, you have a greater chance of also being allergic to these foods."

Cross Reactive Food- American Latex Allergy Association
"Degree of Association or Prevalence

High (4)
Banana, Avocado, Chestnut, Kiwi

Moderate (7)
Apple, Carrot, Celery, Papaya, Potato, Tomato, Melons"

In the waiting room- whoever designed this carpeting is a genius. The fibers are woven so that it all just looks smudged, everything I thought could be a puke or blood stain turned out to be a trick of the eyes the way they haphazardly staggered the blue through everything, almost like the entire carpet was going through pixel fail. I was pretty fascinated with it.

Friday, September 4, 2015

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.


Sunday, August 30, 2015

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.

Wednesday, August 26, 2015

mean is how I show my love

There's a new policy agreement I had to sign before my physical therapy assessment this time. They have so many no-shows and cancellations that they're losing a substantial amount of money flow, and THAT, my friends, is why insurance is so stupidly high. Don't blame it all on poor people and ERs. Blame the people who have insurance and medicare who are purposely noncompliant with care plans.

Physical therapy is hard work. It's not for the faint of heart. I've been there- in and out of wheelchairs, using a cane, needing a driver and assistance in and out of the shower, and help getting dressed. I know exactly what it feels like to be a burden and spiral down a black hole of hopelessness. I'm such a good friend with pain that I actually miss it when it's gone, because I almost get high off of it, even without meds.

It's so easy to take the whiny way out. I hurt. Yeah, join the club. I have a headache. My worst headache lasted 6 weeks and I got at most ten minutes of sleep at a time that entire time, because it was so bad I couldn't even lay down, so I hear ya. It's hard. So is having babies, and that's not stopping anybody. I can't do it. Then curl up and die, you big baby.

That's me talking to my head. I have said all the things everyone else has said. And then I kicked my butt and slammed my head into a wall and GOT TO WORK. I got pissed off enough to get up and do something about my whining.

It was hard believing I could do this. Every morning I had to actually literally SAY "I can do this." Sometimes it was just a whisper in my mind while I cried. Sometimes it was a hopeless defiant shout in the dark. But many times I really did say it out loud on my way in to physical therapy.

Yesterday was hard. I'm in a better place than I've been in years, but it was still hard getting through another assessment and core review. I'm not out of the woods. I can't just flop my body into a chair and pop pain pills when I sit too long. I can't be lazy without backsliding into more pain and disability and eventually major surgery. Yes, I can ask them to turn the pain off and risk paralysis and sepsis and a whole list of other possibilities in a 50/50 gamble, because that's what surgical pain management is. It doesn't fix anything. It actually harms the body even more so you just can't feel it. There's no guarantee how long it'll last, and once it's done you can't go back and undo it. I know too many people this has backfired on. It's way too easy to skip ahead to the last resort and then hear the horror stories- multiple procedures melting down into meth addiction trying to handle pain that simply can't be killed off. Procedures that went well but then catastrophic fail happened after a blood clot in the spine, making the disability so much worse than it was before. Pain being replaced with maddening numbness. Asking someone to cauterize a nerve is such a leap of faith, I can't imagine doing that unless I was ready to commit suicide anyway. My psychologist told me a few times I'm a cynic. That's putting it mildly. I look at it like this- if a surgeon tells me he won't do pain control on me even in radiology with a needle because my history contraindicates success (nice of him to be honest), then I'm going to find another way to live like this.

There is this wonderful program in place to help people who are sinking into quagmires of pain and disability. It's called physical therapy. It's there for just about everyone- medicare is very supportive, and most insurance plans will take the brunt of the cost. All it takes is a person telling their doctor they'd like some help with a specific pain- how to move correctly, how to strengthen that area, how to become more functional around the house. I can say from experience that it's like working miracles, but it takes participation. You can get a whole team of people in on it, and they'll all tell you the same thing- pain shots, PT, and even surgery all work better with regular stretching and exercise, and good nutrition and hydration. You wanna heal? Cut the crap. You don't make a car run better pouring sugar in the gas tank. You don't stick a cigarette in your dog's mouth. You don't give babies beer bottles. You don't pick a fantasy football player who doesn't make the workouts. The logic is sound. All we have to do is apply it.

Several years ago I made a decision. Do I want to LIVE? If I don't save myself, no one else has to. Get out there and GET TO WORK. It made differences nothing else ever did.

I went through a little backsliding the last 8 months, so I'm back in GET TO WORK mode. I'm slapping myself to get up and MOVE, I'm plugging my ears and singing lalalalala when my head whines that this is too hard, I'm gritting my teeth and psyching up and telling myself that actors and professional athletes are where they are because they were willing to work for it. There is nothing in this world saying a writer doesn't need that kind of one on one physical training, as well. Sitting in a chair writing words isn't easy. Anyone who thinks it's easy is an idiot.

I know I sound mean. Sometimes you gotta get mean if you wanna stick around longer for your family. Whining my way to an early grave is unacceptable to me. I've got things to do, people to meet, a world to change...

Monday, August 24, 2015

things that have dramatically impacted my depression and anxiety levels


I know this is going to sound crazy, but I'm a long-time depression survivor, and this is trew.

1- The sudden wheat allergy last year that had me in clinic and 2 ER visits and put me on prednisone for 17 days was a godsend. There's a rumor going around that wheat might be a big culprit in depression. After being completely wheat free for nearly a year now, I can totally vouch for that. I have no idea if it's related to the big Monsanto GMO wheat monopoly thing, but there seems to be some science developing behind it. The severe brain fog I lived with for years is mostly gone, although I still hit walls and have glitchy moments, my memory is getting better again, and my ability to deal with spontaneity and change (I have Aspergers) is getting better again. I don't seem to need as much shutdown time, and I seem more able to steer it now instead of caving to it. I'm not saying the original brain fail was caused by wheat, just that nerve healing (the brain is nerve central) seems to be going a lot faster without it.


2- Regular zyrtec is making it possible for me to drive without delayed PTSD Tourette's behaviors, like tapping my steering wheel because I'm afraid to touch it, or not being able to stop blinking while I drive. I've discussed these anxiety behaviors with a psychologist, because they go back years. I've been rolling down all the windows in the coldest winters over severe claustrophobia while I'm driving, to the point of even pulling out of heavy traffic so I can exit my car before I have a meltdown. I've tried all kinds of meds (highway patrol has driven me home 'drunk' on meds in years past), and all kinds of behavior modification techniques, as you can imagine. (I trigger easily, thanks to being thrown out of a violently flipping vehicle, so it's amazing I drive at all, especially with the pain levels I've had through the years.) Last year I was COMMANDED to stay on zyrtec since my food reactions were going ridiculously more out of control, and I discovered that zyrtec crosses the brain barrier differently than other antihistamines and a regular dose has a very calming effect on me without making me sleepy. I've been able to drive like a normal person and have gotten through a whole winter and a very rainy spring and summer without having to emergency call family to talk me through driving home or constantly send update pix of where I am to facebook or twitter. After seeing such a huge change, I have to wonder how much of my severe anxiety had more to do with a continual overwhelming barrage of histamine reactions than anything. This is not true for everyone.
Cetirizine: actions on neurotransmitter receptors
The Zyrtec Effect
But this may be why it works for me. That's right, they're discovering anxiety (in some people) might be related to histamine over reaction.
Fibromyalgia Trial Shows Promise…For Chronic Fatigue Syndrome? Mast Cells and Ketiotifen in FM and ME/CFS


3- ASTYM treatments in physical therapy coupled with regular chiropractic adjustments have lowered the screaming pain levels on my nervous system more than anything else I've tried in years (and I've tried everything but surgery) and considering I've actually asked a dentist to do root canals on healthy teeth and sometimes think it would be lovely if someone would just severe my spinal cord in at least two places and put me in a wheelchair, my whole life turned around over this very simple technique. Lowering the pain levels dramatically lowered the stress on my nervous system, and that has made dealing with anxiety and depression much easier. There is nothing lovelier than physical therapy where you get one on one personal touch through massage and strength training, which has done me so much more good than medications. At first it was hard because I can't bear to be touched (super aspie + pain syndrome), but over time it became a real life saver. To give you context, it took four years to break through the nasty pain just under my skull because the scar tissue had grown so thick and was creating so much pressure and swelling around my cervical nerves that I couldn't even look up at the stars for years without nearly passing out. The scar tissue was the key- microfissure and slowly rebuild new more elastic tissues, and it works best with regular stretches and exercise. I'm actually sleeping nearly through the night now, after many years of not sleeping more than 2-4 hours through the night, even heavily medicated. More sleep and less pain eases anxiety levels.

I actually owned one of these.

4- I've noticed letting my glucose levels slip up (I'm diabetic) has an almost immediate effect on whether I go into a depression plunge, which is easily masked with meds and distractions that keep me from connecting those dots. Since I don't control with meds (my doctor pulled me off over med intolerance), I must be vigilant and aware of exactly what I'm eating all the time. Since I'm no longer on head meds, I've been able to see how immediate and drastic something as simple as snacking on a couple of cookies is when I haven't had any other food in several hours. My worst anxiety attacks used to come on mid-morning, and after I found out I'm diabetic, it was easy to see the pattern after a typical carby breakfast of cereal, pancakes, french toast, etc. If I don't want to blow the rest of my day on a sugar spike induced anxiety attack and then down a depression hole as my brain and body fold up trying to deal with that, I steer widely clear of anything carby before noon, and only sparingly the rest of the day. I wrote a post a few years ago, Holidays with Diabetes- Easier than You Think, in which I show how a person can still continue to have sweets all day in very small amounts as long as they avoid carb loading, but I've noticed since then that eating like that is like teasing depression all day long until it blows up into anxiety, so I've stopped doing it. If all you had to do to control your anxiety and depression was stop drinking soda and eating donuts and cake and french fries, would you do it? I've lost a sweet amount of weight over it, so I really don't miss 'comfort food' any more.


5- And that leads to small meals. Over time as I've fine tuned my metabolic and chemical default states, I've noticed that even when I watch the carbs, I feel much better through the night when I don't fill up on snacks in general before I go to bed. I've spent years waking up to full blown anxiety out of a dead sleep, and that lately seems to have gotten better all by itself just by not eating after 6 p.m. They say don't eat for a few hours before bed to avoid heartburn and GERD, but it also works for other problems, too. I've been through severe GERD, which can be dulled by continually eating or even just drinking milk, but when you add diabetes to that mix, you can get full blown heart racing in the middle of the night, and then doctors increase your blood pressure meds and put you on more anxiety pills, and as time goes on and on, you become high risk for sleep apnea and dying in your sleep from medication overdosing.
Anti-anxiety drugs, sleeping pills linked to risk of death
Popular sleep medications associated with increased risk of death
Anxiety attacks in your sleep are your body kicking in keeping you alive. If you are having anxiety attacks in your sleep, the fastest and most drastic change you can make is to stop eating before bed.


There are a lot of people on the webs describing their lives with some pretty nasty sounding anxiety and scary depression. I've been there. Years and years of it. I've been a pharmaceutical guinea pig, I know the walk in clinics and ERs like I know my own house, and my family is so good at automatically watching out for my triggers that I feel like I've really dragged their lives down sometimes. My body has become so over sensitive and hyper aware of every little bitty change inside and out that I only feel safe in my own home, and living like this is ridiculous. This has nothing to do with will power and mental illness, but living in a body that can't calm down because I've trained it for so many years to stay in fight or flight response. Well, it's starting to calm down now, and I'm loving it.


I discovered all these things accidentally. I don't think doctors have a big picture yet, but they're working on it. I grew up on homeopathy, and guys, it doesn't work. It's just training your nervous self to compulsively pop more pills or whatever. Discovering I'm allergic to chamomile tea was an eye opener, most people don't even think of that. Anyway, if you want to feel better, get better, have more control over the pain and depression and anxiety blowing up and shutting down your lives, do these things-

-Get a glucose meter and use it religiously if you are diabetic.
-Find a good chiropractor, AND talk to your doctor about physical therapy for the pains that ail you.
-Take advantage of your medicare (it pays for PT) and insurance (they pay, too, somewhat grudgingly, but beats having surgery, which should always be a last resort unless it's a medical emergency).
-Stop lying to yourself about it's ok if you have this bag of chips or that pint of ice cream.
-Reconsider using meds to slap bandaids over what you can be fixing yourself. I don't know about other diabetics, but I get nasty headaches when my high blood sugar comes down too fast, and since I'm allergic to tylenol, I monitor my carbs instead of popping pills.

And the biggest part of making a new Plan is
-TELL SOMEONE. Get other people in on the changes you're trying to make. You don't have a safety net if you don't tell anyone what you're doing. Or keep a journal, write it down, blog it, vlog it, share your experiments, then look back a year later and see if anything has improved.


There is no such thing as instant success. My brain crash was in 2004, my body crashed in 2007 between a slipped disc and a nasty CMV infection on top of undiagnosed diabetes. I made a PLAN in 2008-2009 because I honestly felt like I was dying and nothing was helping, and my life really started turning around in 2011. I finally broke free last year, healthiest I've been in over a decade, able to take care of myself and do my own shopping, control my own problems, but it took a plan with a set of long range goals, a team that included doctors, chiropractor, and psychologist, and my determination that I didn't want to die yet. I was so miserable and my life sucked so bad, and now it's all a nightmare I woke up from.

I was there. Fat, crippled, ugly, and a really scattered mess. Don't blow off what I'm saying.


If you knew you could save your life and be boinging around feeling good ten years down the road, would you do it?

Stop eating that crap. Decide what you want. Make a Plan. Write it down. Set goals. Tell someone. Create a team. Start a new habit of living better one small step at a time. In ten years you will feel better and look better and be glad you're still alive. Even if you still live with depression and anxiety, you might find it easing up because your body is doing better.

Most of all, stop kicking yourself. Doesn't matter over what. Self defeat is the fastest way to sink.

If you are also struggling with alcoholism, I wrote this.


Friday, May 1, 2015

embracing the wolf


Of all the watches I've been on, this one has been the tensest on my family, canceling plans and rearranging some financial priorities. Twiddling our thumbs waiting for results is always the hardest part, but once again, here we are on the other side and everything is going to be fine.

A few years ago I realized my biggest, maybe even my own only real fear is not being finished yet, having to stop, being taken off the game board before I feel like I've done what I came here to do. Realizing THAT was my fear behind everything else, I decided there was nothing that could stop me once I decided I'm the only one who can truly stop me.

Some of you have watched me come back from a dark precipice, a nonlife of near complete nonfunctioning in all ways, physically, mentally, emotionally, spiritually. I was nearly beaten down by what I didn't understand. I was given handfuls of narcotics and benzons, pain killers and antidepressants, antispasmodics and anti-epileptics. I learned the art of mixing 'cocktails' and chasing them with OTC potentiators. I spent years legally drugged out of my mind over documented valid excuses.


And it was killing me. There came a year where I knew it was killing me. The meds were actually destroying me faster than the reason I was taking them. Before the final light bulb went out in my collapsing mind, I realized I had to choose- Do I want to live? Am I willing to do what it takes to LIVE? Even if it means I choose more misery than I've already been in up to that point? What am I willing to do to LIVE?

And better yet- What do I have to live for?

Embracing the Wolf

Friday, March 27, 2015

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.

Saturday, March 21, 2015

on a scale of ten

Full Metal Pinky
I'm one of those people who doesn't easily identify with a user friendly pain scale. It was invented as a communication tool for patients undergoing medical assessment, and it's actually quite sophisticated in its rules of use.

click to see pic bigger
My challenge communicating my pain level comes in part from enduring so much pain for so many years that even I will assess myself in the 0-5 range on a good day if I'm not doing anything that aggravates it into a more immediate problem. Attempting to communicate that to every doctor I see with a hope that anyone else can help me learn to communicate my own pain better to someone who isn't in my body quickly becomes a dismal jaunt into futility, and aspie me often wants to shut down and not even discuss pain level so we can just move things along. My biggest challenge is communicating relative pain to someone who hasn't lived with continual nerve pain for more than three decades.

Why is this important? When  a person functioning with a nerve injury has a change in pain level that seems microscopic to anyone else (7.5 jumps to 8, for example), it might monumentally affect function around one's home. That doesn't necessarily mean we must jump into new prescriptions or pain shots or surgeries. What it means is that whereas I was coping with a string of bad days, I suddenly started dropping eggs on the floor or something because an arm got so bad I couldn't force it to keep doing stuff, or I started stumbling while I walk because I'm having trouble lifting my leg high enough to move my foot forward. Reporting changes doesn't mean I'm looking for handouts and fixits. I was so relieved to finally figure out how to verbalize "help me find a way to live with this better without me accidentally triggering it and making it worse instead of throwing another prescription at me", which translated to physical therapy and two years of wonderful relief and improvement.

Sadly, once that much improvement is reached in physical therapy, measured as range of motion improvements in mobility and strength level improvements in endurance, there is no 'need' to continue, and people like me can find themselves left hanging short of further improvement because health insurance isn't about personal training. If I want more I must cough up the cash. I can use what I've been taught and maintain at home, but trying to keep pulling $1800 a year out of insurance for preventive care to hold back an elective $50,000+ surgery and all its own months of therapy afterward is unacceptable to them. Next step is pain clinic, with not much more than a 50% hope that a very restricted amount of steroid shots will be helpful and stacks of horror stories in the search engines from people who suffered further nerve damage because of the shots. Lumbar Epidural Steroid Injections for Low Back Pain and Sciatica


Because I've lived with so much for so long and have made it through some really rough years to some much better ones without succumbing to shots and surgeries, I know that the subject of pain relief is very relative and subjective, and that making a mission of seeking pain relief can sometimes backfire. I've chatted with a number of people about their spinal surgeries. Some say it was the best thing they ever did. Some wind up on meth trying to handle even worse pain afterward because nothing else works. Some live with irritating tingling and numbness instead of pain, or develop new mobility challenges like limping. A few wind up back in surgeries for complications, and one person I know of wound up paralyzed and so messed up that years of therapies and consequential surgeries haven't improved his life.

Since I have held out this long enduring what others might never believe they could endure, I feel that caving to pain shots and surgery will be more about genuinely rescuing me from ultimate life threatening damage or actual screaming sobbing pain with me curled up on a floor unable to function without assistance than simply just making my pain go away. By the time surgery arrives, I intend to be thrilled if I wind up paralyzed, as long as the pain is gone. Can you imagine how thrilling that would be for me to never have to feel that pain again? I can see me reaching a level where I'd gladly trade the use of my legs if it really meant that, but I know better- life in a wheelchair isn't a breeze by a long shot, and there can be other complications from increased immobility.


Life is pain. Anyone saying different is selling something. I learned that from The Princess Bride. In that movie the pain scale goes up to 50. If I'm somewhere in the upper 30's, I tell people I'm feeling rough. As I cross into the 40's I might say I'm feeling terrible, and as it hits 45 I'm using the word wicked to describe my pain. If I'm using the word nasty to describe pain, I'm at a 48 on the threshold of 50 and about as close to blacking out or throwing up as it comes. A two or three day nasty level is fairly unbearable, but I once did six straight weeks of 48-50 that allowed me to sleep only ten minutes at a time, and only sitting up holding my head up with my fingertips in specific places. Brain scans were fine, no big problems popping up on the neck radar. MRIs are wonderful for assuring me I don't have scary stuff going on, but they don't show you anything about having an odd viral infection hitting a Lymie right in the ol' nervous system. After getting through that one, everything else I go through seems milder by comparison, even though someone else might find my daily pain level, that I would shrug off at a 3 on a 'good' day, intolerable. (I keep saying I'm holding out for an opium patch.)

On a scale of ten, my pain level today is fluctuating around the 8ish point range. I have moments where it drops into the 7s, other moments where 8.7 goes all 9.3 on me and I spend a hellish 15 minutes trying another trick I've been taught by someone who has a PhD in pain management. On weeks like this I get a lot of work done. I must move continually, distract myself continually, rotate through a pattern of up and about or resting, usually in 20 minute increments. If I don't want to throw up and go into throbbing headaches from the higher pain level, I must monitor everything I do, everything I eat, every move I make, and keep my brain racing full blast ahead of the pain.

I started slipping again over the last few weeks. Stuff got hard, depression sideswiped me, I lost my momentum, and stuff in my head got ugly. And then I found out I'm in new territory now. Things could get uglier. Harder. Dangerous... Time to brace for a loop in the ol' roller coaster.

I can do this. I've just gotta get my baditude back on.