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.

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.