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.

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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.

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.

wizard level unlocked

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

natural red light from a heat lamp bulb, not edited

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

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

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

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

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

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

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

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

We can do this, guys.

liking the pain

"You're gonna feel it."

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I should be dancing

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

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

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

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

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

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

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

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

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

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

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

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

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

middle of the night chronic spoonie lurker jackpot

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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...

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.

spoonies and the periodic table- stop throwing darts at your life

I may be formally redacting my new year's resolution to avoid chocolate, and I'll tell you why. I used to get magnesium in my diet via cashews, which I loved until that blew up into an anaphylactic reaction back in 2011. Since then I've been ordered by several doctors to avoid all nuts, including even more foods by family extension. The next best thing on the list (besides whole grains, which I don't pursue because diabetes) is leafy greens. I'm discovering that even though brussels sprouts qualifies even more than leafy greens, it somehow fails to make the usual leafy green list, but since I love brussels sprouts, yay.

However, after a series of food reactions last September, I chopped out several major food items for a length of time, particularly chocolate since it is known to raise histamine levels. Up to that point, I'd been eating at least one teaspoon or more of cocoa powder nearly every day for years because I make my own hot chocolate with my favorite protein powder. Cocoa powder is rich in magnesium, and although it's difficult to eat enough of it on a continual basis to be worth it (let's assume I don't want the extra glucose and calories and caffeine), it does actually make sense to include it if I do so sensibly. I'm making this decision after I got this test result back.

One of the most noticeable changes I've had over the fall/winter holidays is my fibromyalgia doing something new. I've been getting long hard streaks in major muscle groups, easily felt with fingertips, feeling like I have stripes running through my muscles. They are sometimes excruciatingly painful, worse than my normal fibro flares where an entire muscle group goes hard and stays hard until it is vigorously massaged and stretched out, which is a lot more work than most people go through before they get their healthy exercise. Magnesium is one of the biggies with fibro because it's crucial in muscle conduction (it's all about ion exchange and enzymes, but I digress), and it dawned on me that I'd chopped out my major daily source, so I tried supplementing with tablets out of a bottle.

I grew up on handfuls of supplements. I know way too much about supplements, thanks to an exuberant mother. I know all the debates by heart- oxides vs citrates vs chelates vs stearates vs... Back then it was all about dolomite, which has warnings, now it's about liquid. How can you tell which is the best? Point blank, magnesium supplements hurt my stomach. I break them down into smaller portions, bury them in food, skip days, doesn't matter. I'd rather eat the plants that magnesium comes in. I love brussels sprouts (and broccoli, another good source), but I can eat only so much. I'm going to try going back to putting a spoon of cocoa powder in my protein drink several times a week. If I have to chew another children's benadryl doing it, so be it, but so far my body seems to be ok with it.

Why is that a big deal? Because after about a week of magnesium supplements my stomach hurts so bad I'm doubled over, and as I've done this off and on through the years and complain about it, my doctor wants to do stuff like ultrasound on my gall bladder or a colonoscopy. Tests always turn out FINE, and I finally learned the pain goes away when I stop taking the magnesium supplements. I'm tired of tests. I'm tired of magnesium supplements. Bodies don't digest rocks very well, no matter what form the molecule takes. If humans could digest rocks we'd be grinding them up and eating them. Filtering them back out of plants and calling it a different name doesn't make a lot of difference in my stomach, I'm still swallowing a rock. However, I have to wonder how the above test result would look if I weren't trying so hard. Would it be worse? Would it even matter? Magnesium deficiency is notoriously difficult to test for, yet I live with many of the symptoms almost continuously even though I still remain within a 'standard range', albeit on the low side, according to blood tests.

See that chart? Yeah, that's me at rock bottom the first time they tested and then four days after an injection. I bottomed out even worse six months later and got another injection, but  21 days later was nowhere near the level I reached after my first injection, so I guess over an extra couple of weeks I lost that much serum magnesium, which might be a normal rate of loss after an injection for all I know. Now, fifteen months later it looks, by sheer comparison, like my magnesium level is better than it used to be, right? BUT. I've been struggling with supplementation and attempts to get more magnesium in my diet. I just know that I was having an easier time when I was at the 1.9 mg/dL on 2/14/13, four days after an injection. My latest result was 1.8, so at least I know supplements are doing some good. It just doesn't feel good enough, and I know if I stop trying, it'll bottom out again.

Side note- since I've received magnesium injections in the ER a couple of times while still being within 'standard range', arguably at the very low end as in the chart above, and feeling better afterward along with cessation of particular symptoms, I am able to correlate how I feel now with magnesium. For instance, one of the symptoms I was having both times I got the magnesium injection was a weird numby sensation all over my face, which Rx lists put in the 'severe' range of deficiency symptoms. Of course, that could be related to nerve damage I'm still healing from, as noted in previous posts, but I don't live with it continuously- this symptom being markedly worse at the same time as a low magnesium result is pretty clear cut for me. Regular doctors want me to take xanax or head meds for that, and a neurologist says it's something I have to live with, even though it went away with a magnesium injection. So when my lips and face start feeling sort of numbish, if I'm having no other symptoms of allergic food reaction, I think magnesium, especially if my fibro is flaring.

My point is that even though I'm keeping my serum magnesium level up, I'm having symptoms again, so serum blood level may not accurately reflect what is going on with me. I can only imagine what would be happening with me this winter if I weren't even trying. I sometimes entertain the notion of feeling bitter about going through another slump, but then surprise ripples through the area as a person my age keels over from a heart attack. They all say Too young, but 'young' doesn't mean 'healthy'. Hard to feel bitter about having to try so hard to get healthier when someone else who wasn't trying at all just bit the big one, or just barely survived thanks to a life saving surgery and most likely a big shot of magnesium along with it.

Magnesium deficiency is prevalent and preventable. (I'm not being paid to link anything in this post.) I am a product of big pharma. I started extricating myself from big pharma in 2008. It has taken a lot of planning and dedication, and I'm feeling way better than I did in 2008. This guys explains in a very easy way how bad it got for me.



If you arrived at this post searching for a light in the dark, I wish you all the best. I'm here to say there is hope, but it's up to you to want it badly enough to plan your extrication. Please don't stop meds cold turkey without thorough research on how to do that, and please stay in touch with your doctors so they can help you monitor. Once my doctor saw me breaking free, he switched directions with me and continues to cheer me on.

controlled crash- holiday spoonie

It's been years since I've gotten through the Christmas season without being in some level of flare up. I usually get validation in the form of a speckled ANA and 80-90 SED in January or February and wind up on prednisone for a week to knock it back down. I've been doing this so long that I can feel about where I'm at day to day, and in order to avoid an ER trip at Christmas over a solid face plant from doing way too much, I have learned to readjust my days accordingly, slowing down more or letting go of something on the list, until I'm nearly down to a crawl, but still functioning.

I've spent a few Christmases completely nonfunctional and unable to even smile and get dressed without being a huge drag on everyone, so it was easier to hide in my house and cry and try to sleep through everything I was missing. I felt too ill to get into a car to go lay on someone else's couch, and I couldn't be nice on the phone if someone was handing me a million dollars. It's very hard to juggle all the extra social expectations on top of the extra demanding physical expectations the holidays bring. Yes, I've done it all- parent president of high school marching band, a variety of fundraisers, as much school support as I could handle while still working, and eventually had to bail on this and that until I was finally just missing everything. I followed all my doctors' instructions, including handfuls of pills, but nothing replaces rest, nutrition, and common sense. During holidays, all three of those fly right out the window.

Most of surviving holidays in flare up is about balance. People think they have to fulfill social obligations. I realized over time that other people would be shocked if they were asked to be supportive of social obligations if it meant risking their lives. Every time I go into flare up, I am risking my life when I do too much and start crashing. I have lived for years with flare ups, and they don't necessarily kill a person outright, but they do cause harm in the form of wear and tear on tissues, and a person must spend quality time rebuilding that shredded tissue if they want to live a good life. Inflammation from a flare up is hard on blood vessels, the lymph system, major organs (especially kidneys and eyes), and can affect the brain to the point of making terrible mistakes in traffic, and we all know how immediately life threatening that is.

Several big things happen in our bodies to keep our balance. Hormones regulate everything 24/7, special organs continually assess chemical and nutrient levels and send reports to the brain, and the constant feedback is how we stay in a good rhythm every day. We sleep, get up, eat, get busy, eat some more, enjoy something, and go back to sleep. When we get out of rhythm we don't feel well and get jet lagged and cranky. People who live with chronic illness of any kind get bumped out of rhythm very easily, the reports to the brain get a little frantic, the brain reacts with attempts to adjust this and adjust that, but when something isn't working very well to begin with, all kinds readjustment attempts can bump into each other, cascade into a mess, and then snowball out of control. Hormones and chemical levels on blood work look more like a first year programmer failing an exam than an experienced machine that evolved over millennia.

Someone with lupus and diabetes, like me, might feel really good one day. It's the holidays! This is fun! We go on an extra shopping trip, miss a meal, grab food on the fly, stay up late with friends, don't sleep well, feel gross and eat all wrong the next day, push ourselves to keep up, shove extra coffee into our systems, take extra pain pills, and before you know it, a couple of weeks of mistakes have crescendoed into the nasty realization that we are way off course and the only way to fix what's happening in our bodies is to stop everything right now and get back on track, or even get emergency medical intervention. Being exposed to flu or strep on top of all this can result in hospitalization for some spoonies. What a dismal way to spend Christmas.

I have learned to do a 'controlled burn' and a 'controlled crash'.

A controlled burn is like knowing you're going to wreck your day, so you pack for contingencies. I take a lunch box with my own food when I go shopping. I limit myself to only so many hours of activity and then GO HOME. I've noticed 4 hours is about my max, and assume the rest of the day is screwed, I don't try to cook or clean after I get home. If I'm stuck in and out of a car longer than 6 hours, I know I'm going to crash hard so I pre-plan my medication safety net. The key to pills is knowing they do not fix anything and don't give me super powers. They are a bandaid meant to transport me more comfortably to the end of my day, they are not meant to 'cure' or make my problems nonexistent. I have dearly paid for abusing medication to keep stubbornly plowing through life, and I'm on full disability now. I would have been smarter to let go of a few things on my list.

A controlled crash is more of a long-term plan. My holiday stress starts in November and goes for at least 8 weeks through New Year's. After that I'm pretty much in crisis and need intervention. If there were no holidays, the changing weather alone would still impact my life, so I can't just blame holidays. But because there are holidays, I know I'm going to destroy myself, and I know it could get really expensive and depressing to clean all the mess up with doctors and then being stuck at home. So since I know this, I can control just how messy it gets. I can keep plowing stubbornly through, or I can map out a plan with contingencies and loop counters for smaller fails. I can let go of lots of little things and make executive decisions to control my blood sugar and my fatigue level, or I can cast my cares to the wind and spelunk straight into hellish misery and subsequent regret.

We hear people addressing depression and self harm in the form of cutting and whatnot, but we don't hear a lot about depression and freaking ourselves out with blood sugar spikes in the 300s when we reach for the comfort food other people take for granted. And then, if we have autoimmune responses, the inflammation that a glucose spike causes can trigger a flare up, and here it comes, the joint pain, the aching all over, the nasty headache, the difficulty moving around and sleeping and keeping up. And then comes the regret or self pity while our brain chemicals freak out and depression knocks us flat. And then comes over medicating or drinking, waking up with either way too high or way too low glucose levels but we're too depressed and late for work to check, and then comes a nasty morning traffic accident. I know of two morning traffic deaths in the last year directly related to blood sugar levels, both of which left orphaned kids behind. That was NOT a controlled crash. Yeah, now you see what I mean by controlled crash.

Everybody's got something at Christmas. Some people have cancer, some have funerals to go to, some are homeless, whatever. It's normal to go through depression at holidays and feel bad, but we must realize that sooner or later, everyone goes through a really bad Christmas. Or several. My mom was airlifted to a hospital on Christmas day one year. One of my children was in a hospital several hundred miles away on another Christmas having emergency surgery. Other Christmases I've been too ill to shop or wrap presents. So before we start our controlled crash and burn plans, the first thing we must embrace is that part of the PLAN is to plan on depression. Allow time outs for depression.

Normal up and down depression is nature's way of telling us we need to slow down because we're doing too much and then kicking ourselves for not keeping up. Stop that! Plan out a picnic for your depression. Make it a regular date thing. Don't shove it off and pop a pain pill when you've got time to waste a couple of hours. Let go of the world and crash on your couch. A lot of little crashes beats a nasty big one every single time. I have noticed over a couple of years that allowing for normal depression swings has a very positive impact on my more severe clinical depression. Depression, for me, is a lifestyle, so I include that in my self care plan. The key to this working is to let go of all guilt. Guilt is a control mechanism that people and society use to force behaviors. I would never dream of making someone feel guilty if they didn't play the Christmas game right, because I can imagine them crying later if I ran over their feelings and forced mine on them. We see it happen all the time. We also think Christmas day is THE DAY to be with family. What about the other 364 days? Doi. That kind of thinking isn't worth your health, capiche? We love each other every day all year long. Let go of that silly guilt. Enjoy a couple of hours of down time.

-*-*-Side note to caretakers- I know you don't get down time. I was DPA for years for my disabled mother, and my sister raised a terminal child. Find a way to do nice things for yourself. It's ok to ask other people to help you do a controlled crash and burn once in awhile.-*-*-

The next thing to embrace in a controlled crash and burn is forgiveness. If you think something has to be perfect, imagine falling and getting a concussion and not being able to finish making something perfect. Was it worth it? I'm here to tell you nothing brings reality home like a good set of stitches with lots of blood soaking everything. If you think something can't get done without you, imagine this is the year you shock all your friends being the youngest person they know having a heart attack. The world won't stop just because you do. Stuff gets done whether it's you doing it or not. Want to be around to see it get done? TAKE A BREAK. And eat something healthy with magnesium in it. Magnesium deficiency is one of the first things they check for when they do ER tests for possible heart attack. Ask me how I know this. Forgive yourself for not being superman or superwoman, forgive others for not reaching your expectations, and chillax. Just because you didn't die yesterday stressing out doesn't mean you won't have a stroke today over the very same thing. My mom had hundreds of TIAs before the big strokes started. She was right side deficit for years from stress and uncontrolled diabetes.

The next thing to embrace for controlled crash and burn is limits. Set reasonable time limits, glucose level limits, activity limits, and stick to them. I don't know about you guys, but I find it really embarrassing to wind up in an ER on holidays. I feel like I'm ruining other people's Christmas and stressing them out more and I really don't like the extra attention. That alone is usually motivation enough for me to stay on track well enough not to super crash. I've never been hospitalized, even with all my stuff, which seems to amaze a few people. I grew up very independent, raised by a father who still doesn't believe in doctors, and people who see me going to doctors all the time without knowing my history don't have a clue how difficult it is for me to get out of my house and keep trying to find ways to solve my problems with medical intervention. I feel like a guinea pig, I've hated all the tests I've had to go through, I loathe the fear (I usually have to be sedated for a simple MRI), BUT I am very very good at living with autoimmune flare ups and diabetes because I know how everything in my body works. I've known too many people who shrugged odd pain or feelings off and found out later they were in advanced stages of cancer or having severe diabetes complications or suddenly having heart attacks that nearly killed them.

One of the best inventions on the planet is a little tiny flip spiral. You can buy those in packs. Every day I flip to a clean page, put the date at the top, and then write the time when I do glucose or blood pressure checks and every pill I take. Make it a habit. It very quickly becomes second nature, and then you start noticing things. Maybe those two pills shouldn't be taken together. Maybe glucose readings are better at certain times of day. Maybe that headache or anxiety attack or cranky feeling you get starts showing up about the same time every day, and you notice it seems to be happening within so long of certain meals or activities. Or every single weekend. Once you notice a pattern, you can control the pattern. It's very liberating not feeling hostage to chaotic cosmic whim, life going out of control again, freaking out in the wee hours over something. It's very empowering to experiment with data and results over time.

Hence, a huge part of my controlled crash is data entry in a tiny flip spiral. I can tell you that I've missed taking my thyroid pill two days in a row only twice in so many years and both times I was extremely miserable. That alone snowballed several days into a ridiculous debacle, because thyroid has huge impacts on sex hormones, blood pressure, and diabetes. The headaches were out of this world, my heart thumped real hard, and the fatigue crash was pretty scary, not even going to mention menopause symptoms going off the rails. Yeah, two days was all it took for me. And I know this definitively because if a pill is missing in the spiral, I didn't take it. This has been a crucial strategy for me because I had significant brain fail for several years and my short term memory was a joke. I could have caused myself serious harm taking my pills wrong, and many people do. Medical mistakes are more common than you think. Not all prescription pill deaths are Hollywood actors overdosing. Click this if you think I'm being too dramatic. Prescription Drug Overdose in the United States Yeah, don't want that kind of crash and burn, either. You're seeing more and more why I'm calling my way a 'controlled' crash and burn.

I use my little spiral to help me set limits. If I can see cause and consequence patterns, I can control outcomes. If I can see that my fasting blood sugar is over 100, I know better than to eat sweets for breakfast, which starts the cascade for a really bad day with a nasty headache later and feeling sluggish through the afternoon, grabbing more junk and coffee, and then not being able to sleep, which in turn starts the next day off negatively before I even get started. If I have several rough days in a row going off track, I know it'll take a couple more days to get control back, and if I feel a flare up coming on, I know I need to rearrange my schedule for the week or wind up going out of control and calling my doctor. I can glance back through my little spirals and easily spot the days and weeks that went out of control.

I live on this edge in my body every single day, where things can go out of control real fast. I plan my life meticulously. That sounds like a drag, but it's actually pretty easy when I follow a few little guidelines I've made for myself. Take breaks, set limits, forgive myself, and pay attention to what I'm doing to myself. The easiest way I have found to control the cascade is to count my carbs in the first place, faithfully take my thyroid pill, and assume I'll need breaks even if I think I'm feeling fantastic. For the most part this has worked really well, but I still make some pretty big mistakes.

So a couple of days ago I made eggnog. I know I have to stop at 1/2 a cup and no more for at least an hour, preferably two hours. I wasn't feeling well because I had overdone, my brain fell out, and without even thinking I drank 2 cups of eggnog within an hour and popped my one pain pill for the day (doctor ordered anti inflammatory), then fell asleep on the couch. An hour later I woke up in crisis, disoriented, brutishly nasty headache, blood pressure spiking 187/112, weird things happening like one of my arms being ice cold with nasty spiky nerve pain shooting out my blanched white fingertips while the other arm was hot and my hand was bright red like I had been badly sunburned. My pulse was fine and my arms worked fine, so this was more like a nervous system reaction to something, but it clearly didn't seem to be any kind of allergic reaction. I finally thought to check my blood sugar and couldn't believe how high it still was fours hours after the eggnog (I usually go back into the 90s within 2 hours, so I must've gone really high),so I didn't eat the rest of the day. I'm guessing the glucose spike triggered an autoimmune reaction in my nervous system. This is not a new thing with me. Two days of severe headache and other nerve pain later, I'm kind of feeling ok again but dragging like I ran a marathon. All because I drank some eggnog two days ago.

The rest of my Christmas holiday absolutely must be revised now to a more tightly controlled crash. I feel like I'm in flare up now, my energy level is almost nonexistent, and it's up to me to get my team (family) in on not letting me hit the wall now before Christmas. No extra surprise favors from gramma on top of what I've already mapped out, no more exciting hustle and bustle, the plan now is to coast and stay on track with small meals and lots of rest. NO GUILT.

It's easy to forget all this when I'm feeling pretty good. It's easy for my family to forget all this when they see me feeling pretty good. But I've been kinda cranky lately, which is my typical warning sign that epic fail is ahead. I have to remove myself from the game board immediately. I did pretty good this year getting stuff done up to this point, and I'm going to focus on that and not moan about what I didn't get done. Getting 'done' with stuff before holidays isn't worth risking our lives. Capiche?

I've had years of practice. It never gets easier. It never stops being scary. But at least it's not hopeless any more. It's no longer a crazy scary scream ride that I'm clinging wild eyed through. It's more like a merry go round I can step off of and watch from the sides. I don't have to feel sad about it, because I've learned I can still enjoy it while I take a break. I don't have to be involved to enjoy the holiday. I can be glad I'm still here to see it happen.

That, my friends, is a controlled crash and burn. It is my Christmas gift to you if it's still a big crazy ride for you and you are alone screaming through the night on the internet looking for answers and feeling like your Christmas is spiraling in flames. Take a deep breath and put 'tiny flip spiral' on your shopping list. You're about to change your life.

If you're still in the mood to keep reading, I found this forum convo very helpful.

Is Having Blood Sugar in the 400's Dangerous?

This one is more techy.

Lupus and Diabetes
"People with lupus or diabetes – or both – can improve overall health and relieve a number of symptoms just by making healthy choices. A plant-based diet with lots of vegetables, legumes, and plant oils is critical. Adequate rest is also important. And exercise is crucial, both to control weight and insulin levels and to increase energy and improve mood. A healthy diet and a commitment to a treatment plan will strengthen the body and help the immune system return to a state of balance – and will make the treatment plan itself more effective."

One more thing- I can't repeat enough what a difference getting more protein in my diet has done for my overall physical and emotional health. Your tissues cannot heal properly without adequate protein and you will always feel 'off'. Pills can't fix that.

Get that spiral!!! Good luck.