wizard level health management

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

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

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

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

~~~~~~~~

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

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

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

the unforeseen complications of cervicogenic headache after surgery

click pic for great article

This.
A Headache From a Pinched Nerve

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

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

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

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

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

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

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

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

when your spoons feel like 2-pronged BBQ forks

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

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

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

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

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

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

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

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

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

Pinky sent me to my room until I can behave better

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

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

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

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

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

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

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

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

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

wellness planning, fall back planning, and maintaining

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Over several years I have completely changed my life.

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

living with raynaud's

Imagine being stuck in a body that doesn't respond to environmental change properly. Imagine being along for the ride and there is nothing you can do but try not to grit your teeth too hard and wade through it. Imagine someone next to you making fun of you being a big baby and telling you to tough it out. Imagine finding out years later you've got a real condition that not only makes you more miserable, but impacts your quality of life in ways people who mock can't even imagine.

I've apparently had Raynaud's since childhood. Waiting for a school bus on a snowy morning had my teeth uncontrollably chattering when others' weren't. Doing chores involving cold water on a self sustaining farm included years of garden to freezer or shelf food prep. Working outside in winter to the point of not feeling hands and feet was not only expected, but very much taken for granted, even when a person couldn't feel their hands and feet again an hour after coming back into the house.

None of us knew the difference, except that I'm more of a whiner. I was the big baby, and I learned to tough it out. What I've never told anyone is that as I've gotten older, I've experienced some very scary incidences of vasoconstriction in my limbs to the point of my arms, legs, and face blanching completely white, and teeth chattering uncontrollably, not from going outside, but from simply sitting on my couch watching TV (or even sleeping) and a sudden nervous system feedback glitch tells my body I am in the arctic and I must conserve heat as much as possible, and even though the house is plenty warm, I'll chatter uncontrollably in 3 layers of bathrobe, sweater, and blanket in front of a space heater until my body can believe it really is hot and I can finally throw all that off.

I used to take hot showers, but that got dangerous, and nowadays hot water triggers a histamine response, so I look like I'm rashed out from head to toe when I take a hot shower. A hot shower would be really good for my fibromyalgia, but I don't dare go more than warm.

I live at odds with climate control. I wear sweaters all summer even when I feel warm because I'm so intolerant of air conditioning. I wear short sleeves in winter so I can layer up and down as needed at the drop of a hat because the tiny degree range from the heater going off to clicking back on is miserable.

My body cannot respond correctly to even the smallest temperature change. I avoid summer sun like the plague because I overheat so easily, even though I wear sweaters in the house and set the thermostat higher than many people do. Imagine being like this and going through hot flashes. That was fun for all.

I never wear or use fleece, because I'll suddenly need to strip at any moment or collapse from sudden heat exhaustion. I nearly always have sweaters or extra shirts hanging on chairs to grab and throw on in case I feel the least chilly. I own the temp controls in every car I sit in, and to other people I seem obsessive with fine tuning temp regulation. My family is so used to me being like this they don't even question it.

But it's a real thing. If I'm in a crowded area and overheat, I have to bolt. If I must get through a cold area for some reason, I have to deal with recovering from feeling colder much longer than I ever let on. If I'm at the back of Walmart picking up milk and eggs without a sweater on, I'll still be very cold by the time I get back to the register, and the vasoconstriction in my hands will make even swiping a debit card somewhat difficult. I've broken my eggs a number of times just getting them home because I couldn't control my hands.

This is only one of several things that affects how my hands work, but I know a lot of other people live with Raynaud's too. For some people it's fairly mild, your hand hurts holding a cold can of pop or beer. For others it's a game changer, deterring you from hanging out at stadiums for sports and concerts, or doing fun things with family and friends in weather temp extremes. It seems like a simple thing, like a no big deal kind of thing to have a weird cold hand and feet type of syndrome, but as people age, it becomes a much bigger deal. Less blood flow means less feeling and slower healing. Over time, this sometimes turned into amputations for some people.

It's hard imagining what things are like for other people, but comparing their complaints to how you feel the world isn't fair. If someone says they're cold, they really are cold and need to warm up, and even if you are hot yourself and think they're just whining, you don't know whether they might be living with a condition that will one day claim a limb.

Fast Facts About Raynaud's Phenomenon
Frequently Asked Questions - The Raynaud's Association
How Serious Is Raynaud's Phenomenon? - The New York Times

Just as Ford tells Arthur, "Always know where your towel is", I always know where my sweater and socks are. And I own an insane amount of gloves. Gloves are awesome.

when I'm alone with my demons- pain spikes, PTSD, and anxiety attacks

I've been talking about some of this stuff on Pinky blog, but this one is super long and just needs to go back over here.

So last Friday morning was the MRI bright and early, and as per my monthly epic fail quota, I missed calendar syncing it on all the calendars around my house, so good thing I actually compulsively opened my pocket planner for a quick confirmation, prompting an abrupt charge out the door just in the nick of time.

~Blood-y-HELL~ blogger just took it upon itself to try publishing this already. wtf, dude, I'm not done yet.

>=l

Ok, so anyway, squeaked into my MRI right on the dot, thanx to @bonenado's awesome driving skillz, and then listened to 50s music for 20 minutes.

Reality check 1- The ear plugs did NOT say latex free on the package, and there's no way I can lay through that noise going way past full blown autie sensory overload, so I calculated that I could get through 20 minutes of ear plugs on the zyrtec I'd taken and then start slamming benadryl afterward if I came out with my cheeks all red and puffing up, so going in the tube first thing with anxiety on top of the claustrophobia, rightonrighton. I'd taken a whole xanax, thank goodness. I did take benadryl afterward, but had very little in the way of skin reaction. This is a big deal since I have to wash my hands after I put on my athletic shoes, and the last time I was in a shoe store I wound up in ER and the last time I had shea butter in PT my entire back turned a nasty neon pink. Latex allergies are super real, and it's everywhere. Anyhoo, I choose 50s music because the songs are shorter and I can count them. I figure 10 songs max, this time it took 8. Aspienado does a lot of counting during medical testing. The countdown is the only thing that keeps me from pushing that little button. Oh, and I no longer do contrast. I once had contrast reaction in the tube, and they didn't pull me out while I was begging to be pulled out. Yeah, what's the point of telling a claustrophobic there's a button if they ignore it during an actual reaction. My skin was on fire from head to toe like I was really burning, and by the time they got me out of there I was a weepy mess. I am so very lucky that reaction wasn't worse. Back in 2008 I was ignored, well, nowadays they are required to put a reaction disclaimer in every room where you change into your little gown. I don't do gadol any more, thanx. Anyway, you can see that only added to the overall anxiety problems, right?

Reality check 2- Laying rock still for 20 minutes in an uncomfortable position under duress triggers fantastic pain spikes for several days, no matter how much sedation you're on. Fibro blows up and then goes into full spasm lock mode, nerve trunks and nerve centers light up like it's Black Friday, and there is absolutely nothing any more I can take to make any of it stop or even slow down. I just have to grit my teeth and keep myself distracted and busy till it all calms down again. A simple 20 minute MRI can affect me for days.

I've talked about anxiety and PTSD, and y'all know I'm home alone 12 hours a day, so I thought Hey, why not share how I deal with this? Because I'm not popping pills and calling people, right? So this is Aspienado's tutorial on how I get through a major anxiety spike, like I'm having this morning.

There are nerve centers in your back under your shoulder blades that can trigger upward and wreak havoc, sometimes resulting in nasty headaches or wild lightning pain spikes shooting around your torso in various ways. I've learned over many years that the worst of this lasts about 20 minutes for me and then starts ebbing, so once it kicks up to the top notch, I just hafta get through 20 minutes and then coast down during the rest of it, which can take anywhere from another 20 minutes to several hours. BUT, that first 20 minutes is pure hell, thanks to a big chemical dump on my nervous system.

I used to go to ER. During that first 20 minutes I mimic every symptom of heart attack and stroke, and I've been through the whole EKG, CT, x-ray, holter monitor so many times that I finally decided the only way I might ever be able to tell if I'm really having one is whether I'm still able to easily breathe, so that's the first thing I do, take a deep breath and ignore the pain spikes that rip around my ribcage, because fibro of the chest wall is a real thing and can be easily confused with other real things like pleurisy, which is also exquisitely painful. (Don't ignore this part in case you have a blood clot in your lung, women on birth control, especially smokers, are high risk for that.) So I'm breathing ok, I can walk without gasping, so the next thing I do is get a big drink of water and make sure I've taken my pills correctly for the day. Hydration is pretty awesome, and missing pills can get pretty stupid.

After that, if I'm still walking around breathing ok without any dizziness or something else taking me down, I go through all the motions of getting ready for work, like I used to do in the old days. It's amazing how focusing on obsessing over brushing and flossing your teeth can actually help get you through part of that nasty anxiety attack. It's not only useful and healthy, but after the anxiety comes down you have fresh breath. Hey, I'm not laughing, this is really real for me. I brush my teeth a LOT, and guess what- I don't get cavities, and I've only ever had one root canal in my whole life. (Imagine the anxiety that'll save you at the dentist!) I'm not saying brushing your teeth saves anything if you're genetically inclined for something like receding gums (that's a real thing), but it's still useful. And you can think of other things instead of thinking about dying while you brush your teeth, like how you never see actors with less than glossy teeth, and then you wonder what sort of regime they must go through every single day to always have such clean looking teeth. By the time I'm done drinking my glass of water and checking my pills and brushing my teeth, I've made it through at least 4 minutes of the worst part of the anxiety attack. If you're not taking that long, go back and floss! Doing a crap job won't make the anxiety attack any shorter.

Next is clean clothes. Just strip off, start all over with deodorant and a washcloth and fresh clothes, and then brush your hair. I can't do makeup because allergic (thank you nuts and citrus and the word 'bright' in cosmetic sales), so sometimes if it's really bad I look for weird little hairs to tweeze or something. If I find myself getting lost in that, I know I'll be fine, but sometimes it's just really bad and I can't stand there and have to keep moving.

So after that is getting shoes on, even if I'm not going anywhere. I get my shoes on, make sure my bugout bag and epipurse are stocked, and if I'm not doing any worse by then, I start walking mini laps around my house. I have one of those houses where you can walk from room to room around in a circle back to where you were, so that's my racetrack. If the anxiety is still spiking, I hafta kinda hold myself back a bit so I won't load more heart work on, because anxiety is already stressing cardiovascular, right? But a steady walk usually helps. Sometimes just 5 or 10 minutes of relaxed walking does the trick, and while I walk I can continue to assess how I'm doing or distract myself thinking about other stuff. Sometimes I pick up the house while I walk the racetrack, start a load of laundry or a load dishes soaking, and I've actually been known to come out of anxiety attacks with a cleaner house. Srsly, all the time, guys. I live like this. It is getting better over time, but for a number of years it was pure hell nearly every single day.

During all this, I'm usually dealing with random nasty pain spiking out from the nerve center under my left shoulder blade, damage that goes back to a bad car accident and virtually unreachable in physical therapy. I have a special stretch I can do for a particular muscle that runs underneath, but beyond that, it's all a waiting game. Laying still in an MRI for 20 minutes really sucks to trigger that nerve center for several days, and this morning (3rd day out) is hopefully the last big gasp before it lets go in there. There's nothing like a pain spike to trigger an anxiety attack, and when your pain is unfocused and vague and running along nerve pathways, it's really difficult to tell whether it's something immediately life threatening. Stay off WebMD while you're spiking pain through anxiety attacks. When in doubt, just call 9-1-1. You won't be able to tell if your anxiety attack is ebbing if you keep triggering it with more fear. Just saying. Years of experience here.

My pain spikes travel along nerve pathways, and the word for it feeling like lightning is Lhermitte's. I still have no evidence of MS (they've been checking for years) and a rheumatologist once told me I perfectly described Lyme (I tested positive as a carrier and it's known to neurologically affect people for years, but my doctors still ignore it as causative of anything current), but I did get a solid Lhermitte's notation from a pain specialist in a surgical center several years ago. (A couple of people I know who've had shingles say it sounds like I've lived in continual shingles-like pain most of my adult life, so there you go if you need context.) I go through stringent medical assessment every little bit, and so far the best we can do is 'pain disorder' along with fibromyalgia, although I did finally get a trigeminal neuralgia note in my history, which I'm pretty sure started with being thrown out of a vehicle. Anyway, I'm always very glad they never find any hard evidence for why the pain spikes happen, but that doesn't make it less real, and my medical team in the Mercy system is very sweet to help me find ways to handle living like this.

Anyway, the point is that it doesn't take much to trigger pain and stress, and then it doesn't take much for those to trigger anxiety attacks and PTSD, and then it's all about getting through that horrible surge of fight of flight gripping you when a bunch of chemicals very suddenly dump into your bloodstream without any warning. One thing I've learned to do is check my blood sugar. You'd be surprised how often anxiety attacks follow on the heels of a glucose spike when you're diabetic. I'm not saying glucose spikes cause anxiety attacks, just saying a carby meal can sure make them worse if you are prone to them and have diabetes. Lots of experience here. Don't eat a bunch of sweets for breakfast, ok? Eat proteins and healthy fats so your body can work through that anxiety attack more efficiently.

During the anxiety attack your blood pressure can go nuts, too, and I've learned to NOT check it, because it'll be scary and then go even higher. My highest recorded is 230/115 or something like that. I know someone who's gone higher. If your blood pressure popping freaks you out, you can call 9-1-1 and they'll get you on oxygen and sometimes IV, spray nitro under your tongue, and by the time you get to ER it'll already be coming down if there's nothing else going on besides the anxiety attack. I've done this so many times. Local ambulance noted I'm a frequent flyer several years ago, and as insurance and medicare really don't like picking up that tab, I am doing better and better about getting through these nasty 'panic attacks' all by myself because I'd rather spend what little money I have on food and tech and stuff. Remember, I'm home alone 12 hours a day, and I'm way out of town. Most of my neighbors (I have 3 close by) are gone during the day. It's up to me to learn how to deal with my stuff. Yes, I have actually learned how to prioritize having anxiety attacks so I don't have to deal with the added fear and guilt that comes with how much money they cost, although some people do the opposite and drop dead at home because they don't think it's worth finding out nothing's wrong, so don't be dumb about it, ok? There really are people out there going to ER every day during bad PTSD months and others that eventually get found alone in their houses, so- moderation. You don't have to assume something is wrong or not wrong, all you have to do is NOTICE THE PATTERN.

It takes time. Keep notes. Look at the clock, notice how you feel, write it down, look back at the clock in a couple minutes, notice how you feel again, write it down, and do this every time you have an anxiety attack. It didn't take more than 5 of them for me to realize I actually have a pattern. Some people have different patterns. After noting my pattern- 20 minutes of hell followed by 2 to 4 hours of misery but lessening fear- I began noting events leading up to the anxiety attacks going off. I have figured out several trigger events, and that some of them aren't even true anxiety attacks! Some of it was actually food reactions, imagine that. Stop eating something, fewer anxiety attacks. I can't eat a lot of potatoes. I hold back on them anyway because I'm diabetic, but guess what- people with latex allergies are supposed to be weary of potatoes. Wild, huh? So if I eat a half a baked potato once a week, I usually eat one of those chewable children's benadryls with it (I also take a zyrtec once a day), and I don't seem to have that problem. Sometimes I need a little benadryl when I eat a big salad. During peak allergy seasons, my higher histamine levels seem to make me more food reactive, and if I'm not paying attention, it feels like I'm having an anxiety attack, when really it's a food irritation.

And then there are stress triggers. I'm extremely triggerable. I avoid so much stuff to avoid either weeping all day or going into massive anxiety attacks, including entire radio stations, most of the facebook and twitter people I follow, nearly everything related to news updates, pretty much anything that triggers me emotionally. (This was way worse on muscle relaxers and other meds that can affect mood. Getting slowly cleaned off meds helped me a LOT with the continual trigger thing. Please remember I did this under supervision from my doctor and a psychologist, and then it had to be approved by a psychiatrist, which took another year. Supervision is key. Be honest with your medical team and trust them to really help you.) Once an emotional trigger hits me, I just toss off the rest of the day, because I generally don't recover from that kind of trigger, and if I don't want to wind up having anxiety attacks, I have to just ignore everything and everyone and stay busy writing or cleaning my house or whatever. Nowadays it's minecraft, thank goodness. We've all noticed it's getting worse as I get older, and I think it has everything to do with progressive nervous system something going on, because I've been dealing with nervous system problems since my 20s. Call it Lyme or fibro or whatevs, I don't care. There's no cure coming and since it's apparently affecting my brain, all my plans going forward revolve around crash control, every single day, any given moment. I'm "brain training". My number one goal is even if everything else fails, including memory, I want to be pleasant enough for my family to handle being around me, so I'm doing my best to brain train every day toward less negativity, less automatic reaction kind of stuff, more blowing off what I don't get right way, letting go of control issues, learning the ways of automated politeness, anything that will stave off regrets with my loved ones.

My mom went down smiling. She was so brain trained from childhood to keep that mask on that 5 years of nursing home staff never had a real clue just how much pain she was in, because she would only cry for us. I'm very different from her, masks come clattering off and I fight for what I need, especially if the world isn't making sense. I'm looking for the happy medium nowadays, learning how to trust other people to take care of things and look out for me. I was often left to my own emotional and even physical survival as a child, so trust is a huge thing for me to learn.

I think there are lots of people out there like me, caught in between the old timers and the younger hipster gen, and we're confused how to be ourselves and be honest without becoming the legendary crabby old person. We don't want to become what others mock. We watch ourselves losing who we were, not sure who we still are sometimes, knowing we're still important but not sure what to do with it.

Well, this is what you do with it. Share what you've learned. Other people still need us to see how to handle the scary stuff. Getting older and surviving crap isn't a joke, and there are other people following us that want to know they're going to be ok going down this road, too, and there's not a soul on this earth who won't.

You're going to be ok. Go brush your teeth when you're scared. Think about how you never see your fave celebrity with sticky teeth and how it would be cool to have lots of money to blow getting mouth swag. Or something else if that's not your thing.

liking the pain

"You're gonna feel it."

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I should be dancing

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

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

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

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

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

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

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

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

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

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

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

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

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

needle day

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

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

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

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

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

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

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

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


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

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.

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...

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.