What is tiny and green and hurting all over?

I've been blogging most of the daily/weekly stuff on #pinkyblog, but since this one is 99% medical, it's going here.

I've had gallstones come and go for decades, sometimes they would just magically dissolve and then come back.  I guess thank goodness for being autism spectrum with a fibro nerve disorder, because I was done dealing with the pain long before a rupture, even though I've been putting up with gallstone problems most of my life. I've regularly passed them, very used to that kind of pain, but this year was really different. I felt short of breath and heart racy with the least exertion that got worse over time, and the worst of the pain referred left, so I was checked for everything imaginable, including pancreatitis and aneurysm. I've seen the pathology report after surgery. I got lucky, my gallbladder wall was only .2 cm even after months of being chronic. My mucosa was still intact, but I was a ticking time bomb this year jammed so full of little rocks and scattered particles inflaming the hell outa the surrounding area.

From the abstract The degree of gallbladder wall thickness and its impact on outcomes after laparoscopic cholecystectomy.
"A greater degree of gallbladder wall thickness is associated with an increased risk of conversion, increased postoperative complications, and longer lengths of stay. Classifying patients according to degree of gallbladder wall thickness gives more accurate assessment of the risk of surgery, as well as potential outcomes."

I honestly cannot even imagine reaching the point of rupture. So many horror stories are coming at me now from all directions about complications that I'm wondering how some of you or your loved ones are still alive. One doctor once called me a canary in a coal mine, aware of my internal environment long before other people normally are, and another told me I'd probably outlive everyone I know just because I can feel every little thing inside me making me a nervous wreck.

Since I've lived with autoimmune flares and resulting treatment wreaking havoc on my immune system, I have a very healthy fear of infection going out of control. I'm not easy to treat because med intolerant, so I confine myself to what others fondly refer to as my bubble world. I still go out and run errands, but I'm super cautious about not ever letting anything touch my face until I get home and wash my hands really good. I've had allergic reactions to simply absentmindedly scratching my lip, and I pick up germs so fast just touching things that I'm usually the only one sick. I've mentioned picking up hand-foot-mouth just from resting my arms and hands on chair handles in a waiting room and not being mindful of touching my hands to my face. I had no other contact with anyone besides my husband for the two weeks prior, and he never got it.

One of my biggest fears is CMV reactivation, because I've been living with a liver condition most of my adult life and possibly even my entire life back to around 11 years old. I had a discussion with a liver specialist one year about aggressive mega supplementation for long periods that I was subjugated to as a child, and it's very possible my stomach bloat and belly pain goes back that far. My liver was already sensitive when I started drinking in my mid 20s and I'm pretty sure I went through liver toxicity after sudden alcohol withrawal about a year and a half later. I've been watched for liver tumors after a ten year stint with lupus meds, and then had a few discussions about autoimmune liver disease after initial CMV infection swelled me up for months, which could actually kill me very quickly if that ever happens. The last thing I want to do with my health is make life harder on my liver.

Most people don't even think about their livers and don't know they live with stenosis for years. I've been very aware since my late 20s because my liver almost never stops sending out referred pain signals, and apparently was able to feel the imminent explosion coming on. I can't tell you what a relief the surgery was after months of pain referring, and after the horror stories I'm hearing from friends and loved ones now about their own and others' experiences with gallbladder emergencies, I'm point blank saying stop blowing yours off before it gets to the point where your life STOPS for immediate emergency rescue after a rupture. That level of inflammation and infection isn't easy to get over and recover from once that happens. That ticking time bomb is snuggled right next to an organ you absolutely cannot live without.

Save the liver! I saw when this original skit first aired. If you cannot view this 3rd party embed, you can see Dan Akroyd's French Chef skit -here-.

I just discovered someone has autotuned Julia Child. 😂

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.

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.

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.

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.

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.