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. 😂

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.

TMI time, but you'll thank me

You know your physical therapy on lower back pain is working when sex pain dramatically decreases.

Sex and Low Back Pain
Best and Worst Sex Positions for Back Pain

I've been in and out of physical therapy for low back pain for a couple of years, and this round is more fine tuning specific weak spots because I started getting shooting nerve pain down to my foot several months ago, on top of a few other new pains. It wasn't exactly back to the drawing board, but I'm evidently still doing something that triggers enough extra nerve compression at L5S1 that it felt like everything suddenly got way worse. Well, they say it's a little worse, but still manageable, and the two big things I'm working on now are being aware of what I'm doing so I avoid the trigger movements (no more picking up little kids, basically) and tightening up my core strength around the muscle areas allowing the compression to worsen. Some people have more damage than me and less pain, others have less damage and more pain, so low back pain is a very individual experience.

I bet a lot of you didn't know that sex pain can be caused by nerve compression in the lower back. Even if you have no other back or leg pain, whatever position or movements you're doing could be all it takes, and wham, it feels like someone ripped a new hole or a stab goes down your leg, or suddenly your hip locks up and you're beating out a charley horse in your glut.

When my lower back first flared back up again, I couldn't tell it was my back. I had nasty pain all around my pelvis and it kept feeling like I had a terrible bladder infection. Over time I've been checked and cleared for several things, including cancers and tumors. Nothing was ever wrong. It wasn't until I went to physical therapy and started core strength training that I could tell (feel) it actually started in my back. The nerve compression made that spot in my back feel numb. I could tell, though, that simple things like sitting or standing too long made all the other pain worse, and I had to learn all over how to properly stretch, move, and even walk.

Part of all that was sex pain, and it got pretty excruciating off and on. I could never tell when it would be bad, and it would hit so hard and fast in the middle of it that I'd double up in pain. I blamed it on aging, a mild cystocele that my gyno assured me wasn't a problem, hormones, fibromyalgia- but it always gets better with physical therapy for my lower back.

The L5S1 is the most common site for lower back pain because that joint connection takes the most weight, and the nerve there branches out in such a way that all kinds of weird sensations or pain or numbness can travel around in the oddest ways, even if you still seem to be fully functional and capable.

Describing a new syndrome in L5-S1 disc herniation: Sexual and sphincter dysfunction without pain and muscle weakness (click)

"A syndrome in L5-S1 disc herniation with sexual and sphincter dysfunction without pain and muscle weakness was noted. We think that it is crucial for neurosurgeons to early realise that paralysis of the sphincter and sexual dysfunction are possible in patients with lumbar L5-S1 disc disease."

That basically means that sex pain and/or dysfunction might be a first warning sign of disc degeneration years ahead of disc damage showing up on x-rays or MRI. This goes for both men and women.

I can tell you from experience that pain meds and sitting around on a couch do NOT make this any better, even if the pain lessens. The only thing that has genuinely improved this kind of pain for me is core stretches and exercises specifically designed to strengthen the muscles that support the spine. (That is why it's called core.)

Even if you normally don't work out and hate exercise, you will love core if you spend a little time getting through the tough first day or week, and after that it becomes the tough first few minutes, and over time your body will almost beg you to do something core. Like hang a leg off a bed a certain way. I didn't know that was a core stretch that can relieve pressure right there on that spot, and after I've done the core stuff, which takes about 15-20 minutes if I do everything I'm told, the pain lessens quite dramatically, especially now that I've been using physical therapy somewhat regularly to control my pain. No pills I ever took made the pain lighten up like that, and I've taken handfuls of gigantic and very colorful pills in my life. I was even crippled for a couple of years because the pain was so bad. My worst year I thought I'd never be able to dress myself again.

Or have sex.

I'm having sex, guys.

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.

the shock of feeling normal

Kind of in a o_o place, but I'm liking it. Highest prednisone dose I've ever been on and actually feeling pretty good. I forget what it's like to actually feel good grinding through several months of rough.

And apparently I'm getting the hang of this, fasting glucose this morning was 88, blood pressure 134/80, ongoing food reactions and hayfever allergies finally seem to be controlled, and I'm SLEEPING. Huzzah!

In the past I've had some real love/hate relationships with steroids, and since it's only my third day I'm sure I'll run into something later as I'm tapering. This is also the longest taper I'll have been on, 12 days. Actually 15 total since the reaction breakout and the restart. I've known people who literally just live on prednisone for months at a time and always wondered how, because in the past I've been fairly miserable on it, but that was mostly before I understood how to control my blood sugar, I think. I've also gotten the bone pain that comes with steroid use, which I can very honestly say is THE worst pain in the world, including childbirth, kidney stones, migraines, and being thrown out of a wildly flipping car during an accident. Bone pain is its own speshul thang. This list of side effects is a bit excessive, but yeah, always risks. I've been on and off prednisone at least once or twice a year for nearly 25 years, thankfully in shorter bursts, but it's cumulative over time and I'm very lucky to be in as good a shape as I'm in.

Guess we'll see how it goes. In the meantime, such a relief getting past the last two months of packed ears and sinus and the resultant losing battle with continual histamine spikes. Histamines affect body systems in all kinds of ways and impact other health problems, and suddenly sent me cycling through a series of pre-crash scenarios because system overload. Of all the things I've lived through, I think the most ironic way to croak off would be my own body overreacting and shutting itself down during cytokine storm.

So this week is all about getting back on track, workworkwork, keep slamming through as much as I can while I can, and actually enjoy it because I feel so much better! Yay!

a day in the life

These are highlights. This is how blogging has helped me get through the 'brain crash', which happened in 2004 during Bell's Palsy (which is totally nontypical but may be related to being a carrier, as we shall see) and grew increasingly worse until it started getting better around 2012-13, and is still improving. Between the confusion of brain fog and memory deficit (which was a new thing to my eidetic memory), I was unable to keep things straight for a long time. Being able to go back through private blogs not only helps me remember stuff, but why I made decisions this way or that. Blogging made it possible for me to watch my progress through a plan to get healthy again, physically and mentally. It's been nearly ten years since the brain crash (first signs in Sept 2004, but puzzling because no visible signs of stroke, tumor, illness, or trauma.) Life still goes on. I'm so glad I kept a daily log because I honestly don't remember most of this until it is triggered by reading it back to myself, then I go Oh, yeah... For the curious, I'm a Lymie (first infected in high school) with Epstein Barr (from a wild mouse bite, yeah I was stupid and picked one up by the tail when I was a kid) and had a bad Bartonella infection as a kid, very ill with the measles in high school (probably responsible for surgically corrected arrhythmia years later), nasty car accident, autoimmune flare ups, severe fibromyalgia, a nasty months long systemic CMV infection in 2007, declared completely disabled in 2008, but because I'm a stubborn aspie, I'm doing everything in my power to get back off disability. It's a slow climb up a steep mountain, but I believe blogging is the key to planning, the climbing gear, if you will. They say life sucks and then you die. Well, I want my life to suck as long as possible.

August 18, 2007

•  
  

       Boy.  That was a tough 5 minutes after they pulled out.  Me and Twinkles bawled our eyes out before we went back in the house.

  My sploit is off to Texas today to her new life with her fiance.  Time to start her new job, look for an apartment, get married…

  This was a small part of the loading process…  Boy, my camera is getting bad.

  

  Of course, the sploit wasn’t weepy one bit.  Look at that grin!  She has techno-JOY!!!!  Ok, private joke.

  

  It was a little early for Twinkles, but she was a real trooper, walking in the door at 6 a.m. in time for bacon and good-byes.

  

  Thodin.  The yucky green car that has been part of our driveway for years…  Today is probably the last day I’ll ever see Thodin again.  I think they have plans to trade it in later.  For some reason, this picture gets me more than all the rest.  I have so many memories of moving the sploit to college and back in Thodin.

  

  “Ready, Houston…”

  

  One more quickie pic of my baby….  *snif*

  

  Backing out…

  

  Now Twinkles is crashed on the couch until it’s time to go to work.  I’m feeling a weird sort of blue on my big stupid pills.  The chicken is cackling.  The dryer is going.  I am trying very hard not to think about how badly I wanted to be able to go on this caravan trip with them.

  *sigh*

August 18, 2008

• Finally starting to feel a little more normal, yay!  Finished the antibiotic this morning.  The body spasms are quieting down.  Have been sleeping a LOT.  Just about caught up on the usual chores. 
• Watched the Two Coreys season finale this morning, had it dvr’d.  I couldn’t believe all the pills Haim was on.  They didn’t name them all, but after dumping several other bottles, he argued to keep the vicodin (label said to take 4 a day) and the xanax.  Geez, dude.  I can barely handle 1/2 a vicodin at a time, and I have serious medical issues.  Any time I’m offered xanax and valium I turn them down, point blank.  I fear how hard I’ll work suddenly moving furniture around by myself if they knock the pain away and I have no inhibitions.  Good way for me to wind up in the ER.  You know, I never realized until I watched this season of the Two Coreys that I really am a seasoned drug abuser, under the guise of fibro and lupus.  I’ve been fighting to get off the meds for several years now, and dealing with withdrawals and the shock and recovery my body has to go through on top of being ill, and I’m convinced that the world of chronics and terminals is a serious issue of medication abuse, sponsored by pharmaceuticals, insurance, and the poor doctors caught in the middle.  When I’m on all the same medications that serious drug addicts wind up going into treatment for…  Just because I have an excuse to take them doesn’t mean it’s ok. 
• Scoped out a few sites on epstein barr.  Good lord.  No wonder my doctor was so quick to give me that handicap tag.  I didn’t realize how complicated that one is, and it’s just one of many wrecking me up through my life.  I know I seem pretty aggressive sometimes about digging up info on stuff, but in some ways I’m still pretty naive.  Here I was apologizing to my attorney for wanting to start up a disability case last November when I was so ill I could barely stand up and walk a straight line.  I blame the Asperger’s, I guess it just takes awhile for things to process and really hit me.  I fought the disability for so long, not realizing how much support I would have had even 20 years ago.
• Haven’t talked to my dad in nearly two weeks.  Keep thinking I should call and make sure he’s still ok with Mom’s care at the nursing home, but something in me keeps resisting.  He was calling me nearly every day and sometimes crying and angry, and I had to keep smoothing things out.  Scott’s mom is now driving herself all over creation every day, gets the boot off her broken ankle in about a week.  She has stopped calling me every day.  Well, I take that back.  She called me a few days back to ask if our land line phones were out from the rain and I said yes.  She called back the next day to ask if I’d called in to report yet and I said no.  (I’m very literal.  If she’d wanted me to do the calling, all she had to do was ask.)  Then she called me the next day about the wiring in their air conditioning, and once she found out Scott was available he started getting all the phone calls. 
•   I don’t do phones well.  I don’t do other people’s ‘panic’ well.  I’ve had to get through so much on my own without any kind of support at all, it’s incredible.  It wears me out terribly, as an aspie, to have to handle other people’s stuff.  I feel like I’m still recovering from all that constant problem after problem after problem this last month.  On top of my own problems.

August 18, 2009

Family meeting at the nursing home set for Sept. 1st.  I have so many feelings conflicting around even just the need for this meeting.  I don’t even have to take sides to dread this.  I’m not even on a side.  I see both sides, I see that both sides have blinders on and won’t budge, and I see that it all boils down to me being the main arbitrator because I’m legally in charge of both parents.  I just wish my dad would stay home more.  He’s a good guy, but he just needs to relax and have more of a life than hanging on every breath Mom takes.  If I had known Mom would make it this long, I really should have gotten a lawyer on this years ago.  And her own private room.

Scott picked two Walmart bags of tomatoes last night, half from the big Shop of Horrors bush under my kitchen window, the other half from the bush that fell over two months ago in the flower bed.  When the coffee kicks in (not sure it this will work, the first cup wobbled me back into bed) I wanna get a cookie sheet out and roast a whole bunch to freeze back in little bags for future batches of settler’s beans and spaghetti sauce.

@ 11:30 a.m.

What a long day.  I’m in slo-mo.  It’s so bad that I wrote down that I took a pill, and 15 minutes later could have sworn I never actually took it.  Just writing it down doesn’t mean I took it… dang it.

And I can’t go back to bed because I finally wandered in there and stripped it.    It’s a good thing I’m so far ahead on food, because I don’t think I could cook a meal from scratch today.  I’d wander off in the middle of something and forget I was doing it.

 @ 1 p.m.

I’m willing to entertain the notion that I’m having some depression.  Took 4 hours to get that cookie dough mixed.  My brain shuts down completely every time I think about either 1- my next doctor appt, 2- the nursing home meeting, or 3- the disability hearing.  Ugmo.  Eating a warm cookie.  It’s helping.  Put half the dough into the freezer for another day. Watched a new episode of The Universe, they finally made a new one.  I would sure love to lose myself in just thinking about stars and galaxies. Decided to throw a good *what the heck* to the wind and threw mine and Scott’s pillows in the wash.  Scott’s is line dry only, but I’m going to throw it in the dryer anyway.  If he winds up sleeping on a ball, it might prompt him to go buy a new pillow after two years of saying he’s going to buy a new pillow.  I have no idea how old this one is, but it’s gross, and I’m tired of waiting.

August 18, 2010

• Today is chiro and the grocery store.  This will force me to get a shower.  I’m having the hardest time getting more than 2 showers a week in this month.
  That meaty soup yesterday turned out really good.
  No brain yet this morning.  See ya.

August 18, 2011

I scanned the crap outa the wedding book before Scott took it back this morning with our order, which is now only for show so other people ordering pix won’t think we’re awful parents, because we could easily print them out on our own photo paper now.  We’re just getting 3 pix, of the whole family, the 3 generations, and bride’s parents with the couple. As we were going through the book and noticing all the other family photos, Scott couldn’t help noticing how often *** and her current guy showed up, and how few pix we were in, and it became obvious that Twink didn’t make it clear with the photographer exactly who the family ~was~….

~~~~~~~~~~~~~~~~~~~~~
My perfect bow made it in the album.

August 18, 2012

I really think this weird bladder spasm thing is my lower back kicking off again. Been having problems with it ever since all the mess started up with Andy, then gram, then Scott’s stuff, and now I’m having trouble moving and bending again, and starting to get pains down my legs. Might have to start back weekly with chiro. Also thinking about getting back into core strength training for my spine. (retrospect edit- it did turn out to be severe fibro and was only relieved with many weeks of ASTYM therapy over several months- I can't even begin to describe the pain and the way it referred around nerve centers)

August 18, 2013

Day 7 of norco withdrawal +_+ 

I think the worst should be about over. Been a zinger week, nothing like going through opiate withdrawal on prednisone and round the clock benadryl. I’ve lost 3 pounds, at least. Hitting coffee a little early. 

Tonight is utterly sleepless, only 1 1/2 hours so far. Slept real good earlier in the week, surprisingly, probably all the extra benadryl, even though I was wired to the gills. 

August 18, 2014

*** got back home today, will probably retire now. Scott took his mom and Twink out to see him come in. *** got married Saturday, and after they were pronounced and kissed they locked light sabers. I heard her blade was red, which is Sith, lol.

I finally got a couple of weekends off in a row, and dang if I didn’t get in my bedroom with a forklift. Got that stupid dresser and armoire OUTA there. Scott says I can have a new dresser any time now, so maybe over this next week I can finish up the piles of stuff that have been amassing again since Twink got pregnant. I’ve been using a broken drawer on the floor for at least two years. Was supposed to get a new dresser a long time ago, but Twink getting pregnant and piling in here (rather her here than some place stupid!) and then moving around and then popping the kiddo early practically on top of me having surgery, and then keeping us busy every weekend (and more) since then, this whole last year has been like riding out a string of tornadoes. We’re exhausted. Anyway, I caught a second wind and boy howdy, my bedroom is getting a very badly needed makeover.

My nerves are quietly going into shock. Here we are again, a year later, not sure whether my blogs will disappear. Was hoping to have a little money this fall, but still not sure yet about Xanga renewing. I need to get this book wrapped up. I’m glad I didn’t meet my last two deadlines because I am really liking the conversations I’ve had about breaking it down some more, stretching it out, filling it in. Work of art. I need to do it justice. It’s not just another story being tossed out there, it’s my histoire philosophique. It’s me putting Camus and Lewis onto the same gourmet sandwich. I really do believe I can pull this off, but in the middle of all this other duress and another blog salvage…? I’ve always said I do love a challenge. My whole life has been like the Tour de France.

just dance

One of those days, been moving continually since 4 a.m., what I call racing the pain. Was doing fine yesterday, no probs picking up burrito and sitting on the floor with her, but later after she was gone I sat on the floor on a pillow and ~locked up~. So I took a pill, went to bed, slept great for almost six hours. That usually makes it all better.

Not today.

Holy cow.

So I'm simultaneously epic failing my original intentions but actually getting quite a lot done because keeping myself super occupied while this insane gridlock around a major joint works itself out trumps taking another pill and laying around all day and winding up with the same muscle results but not getting anything done.

Always something. Really looking forward to being able to move normally again. And sit longer than a minute. This post has been under construction for nearly an hour, but boy howdy, the chrome in my kitchen sink is really shiny now.

Moving on.

human error, medical records, and making our own decisions

Loving the new centralized medical records I have access to now online. I can see that just before Christmas in 2010 two inches was temporarily added to my height, and right after New Year's in 2011 a hundred pounds was suddenly added to my weight. My highest recorded blood pressure over 4 years was 194/92 and my lowest was 99/66. My slowest recorded pulse of 60 was on Valentine's Day of 2013, so I apparently wasn't a hot date that day. I can also see that my CMV test came back negative for reactivation, but you can see I am a positive carrier.

 

I've been worried about CMV reactivation since I got home from vacation in the middle of May, thinking maybe I got too run down. It hit me a few days ago that part of this weird bloating and pain and super fatigue *might* be the pain medication my doctor had me try last April and then take on vacation in May, which, yes, was a lifesaver, but now that I'm back home I can tell that it's a crutch and taking it every day might be causing some very unhealthy side effects. (I'm always the person who gets the rare side effects, and I seem to be hitting a jackpot this time.)

I was diagnosed with a liver condition called NASH some years ago after one gastroenterologist strongly advised me to stop taking Ansaid, which I'd been on for ten years, so I imagine it could be likely that a similar medication might irritate the crap out of my poor innards. So I stopped taking it, and whadayaknow, my tummy is deflating, eating isn't hurting any more, and my increased heart rate and blood pressure are coming back down. I was feeling so rotten that I even wondered if maybe I had a kidney infection, but I never got a fever or other symptoms for that.

I have to give serious consideration to weighing the pros and cons of meds since I have an inch long spot they watched on my liver for a couple of years, so here we go, time to wing it again, off the meds and just dealing head on with whatever hits me again. Beats living with feeling like I have pancreatitis. If you've ever had that or know anyone who has, you know it SUX. I'll take fibromyalgia and trigeminal neuralgia any day over that and my liver swelling up again.

So now that the big drive to Houston and back is over, I'm back in ASTYM therapy and menu planning around higher protein intake and lots of raw veg and salads, hoping to get past this fatigue wall I keep crashing into. Crossing my fingers that stopping the med solves the problem. Stopping meds has worked wonders in the past.

I don't advise cold turkey withdrawal for anyone who has been on meds for years, and I strongly recommend you don't do it without your doctor's knowledge. I've been through some nasty backlash withdrawals that had me going back for 'rescue' meds, but in the long run, I've been much healthier getting back off meds than staying on them.

Meds are awesome for short term rescues, but when they become bandaids they turn into epic fail, and a body can become so dependent on multiple meds to keep functioning that suddenly cutting them off can result in catastrophic events. It takes a lot of grit and planning to untangle and extricate oneself from handfuls of medications and find ways to get healthy despite being in very dire straits to begin with, but it CAN be done, if people wanna live bad enough. It's too easy to medicate and let stuff roll over you till you finally just die, but either way, you die in a lot of pain. Handfuls of meds do. not. stop. that.

There is a lot of pressure to take medications, and sometimes they really do help. I grew up mostly without doctors, partly a religious or belief choice my parents had, but that was replaced with gimmicks like you wouldn't believe. I still can't walk past certain sections in health food stores without feeling ill and nearly throwing up because of all the stuff that my mom poked down my throat as a kid. None of it cured illnesses, and none of it prevented more illnesses, especially diabetes.

Our bodies are very good at handling problems if we make sure they have the materials they need to do that. Science has already confirmed that good hydration, plenty of good sleep and rest, excellent nutrition, moderate exercise, and finding ways to lower our stress do more good than anything, whether we are on medications or not. It doesn't matter how much you wax your car, if you don't change the oil once in awhile it's going to start wearing down. Likewise, we can put on all the makeup and pretty clothes and lotions we want, but if we're not eating good food and running around half dehydrated from sugary drinks and excessive alcohol, we get gunked up inside and our bodies have a harder time working right. We call that growing old, but I have been reverse aging since I weaned off my meds and changed my lifestyle. No gimmicks.

This is hard, and I'm going to miss my crutch again. It's nice having a few hours a day where I don't feel so rough. But I have to be honest with myself, it's also scary to think I could slide back into that complacence where I pop a pain pill instead of getting up out of my chair to do my stretches and then move around getting a little exercise because I don't hurt quite as badly when I'm moving around. Pills make it too easy to be still. Medications make it too easy to accept less than optimal conditions for my body. One little pill every day is making me lazy and sloppy, and I'm watching all that hard work to better health slip away again.

It's a choice. I don't blame anyone for wanting relief in their lives. But I want to win the game. I'm going to be the one crawling out of the muddy ditch and capturing the other team's flag while the rest of you slobs laugh it up getting wasted. 


My way of whistling in the dark.

creepy crawley slimey wimey

You might be able to click that and get a t-shirt.

The cute little tummy bug ravaging the countryside made it to my house at the height of its mutating glory, and there was no amount of yogurt eating, hand washing, and laundry burning that could stop it. I did manage to hold it off for a week and thought I outwitted it, but I may as well have let people just spit in my mouth because everyone agrees I added more spectacular to the side effects than any other sickie we knew. I'm pretty sure I lived through a plague of biblical proportions, so I don't apologize for my entire week's schedule going through a shredder.

On the other hand, this is the first big bug I've come through in ten years that didn't take me down longer than a handful of days. What changed? First off, there's this, from Yahoo Health.

A study published in the American Journal of Clinical Nutrition found that eating 100 g of sugar (think three cans of soda) significantly hampered the ability of white blood cells to kill bacteria for up to 5 hours afterward. 

That's right, I had already changed my diet because I found out I'm diabetic. This is a huge deal for me because I'm a spoonie and sometimes need to take steroid meds for lupus flareups. Where most people are sick for about a week, I usually drag on for two or three weeks. One year I was still dragging around months after other people got better, so weak I could barely walk across my own house. And since I found out four years ago that I'm diabetic, I know now all it takes to knock me down even on a good day is pancakes and hash browns for breakfast, so getting that diagnosis and then cutting the carbs way down has been beyond a blessing for me.

Finding the happy medium with my immune system has been a rough road. I don't fear illness as much as I fear my body's response to it. I've been through germs that triggered so much immune reaction that I had to take medications just to hold my body down, and when meds are overdone at all the wrong times, that leaves less immune system function to react to the illness. It's a vicious circle, and hot debates still rage over whether we should let go of meds and go back to simpler living, which for spoonies can mean death inching a little closer every time we get a common cold, and most of us aren't ready to deal with that yet. The hardest part is disentangling whether it's a germ invasion, immune response, or intervening with medications that is actually causing fatigue so severe that nearly all function around the home stops for sometimes weeks. Treatment boils down to cycling through follow up labs to make sure nothing is going too wacky and simply keeping the patient comfortable when no one knows what else to do. What a surprise to find out the real cause behind all that lag was what I was eating, because untreated diabetes lurked underneath everything else.

I lived on handfuls of pills for two decades. That's a long time. I have barely been taking anything in the last four years, and over this last year actually got down to just thyroid and blood pressure pills for about six months. My quality of life is waaaaay better than it used to be, and this week I'm so surprised at how quickly I'm getting well after being ravaged with germ warfare. This would not have been possible if I hadn't changed my diet. I cannot stress enough how difficult it is for your body to function during illness if it can't function correctly every day to begin with, and if you know something you eat throws you off and you eat it anyway- BAD!!!  But yeah, we all do it.

I still have a long way to go. Somewhere around day three I was able to start eating a little again, and all I could get down was carbs... So I took it slow. Small snacks spread through the day. Day four was a little better and I was able to add milk and a tiny amount of other protein back in and by bedtime I was able to eat a salad. Day five was yesterday, and by then I was starving for meat, so I had a pretty good protein day. But I'm noticing that even though I managed to keep my blood sugar down, I'm having some old issues popping up, mainly dysesthesia.

A very common side affect of living with diabetes is the development of peripheral nerve problems, notably numbness, tingling, hot spiky sensations, shooting pains, and more. Since I have been living with nerve damage from a car accident since I was 19, and the abnormal nerve sensations and pain that come with nerve damage, and then the impact that lupus flareups have had on my nervous system, I've noticed for years that every time I get ill I wind up with generalized nerve pain all over my body. It's difficult to describe your actual nervous system having pain, but I can feel my nerve trunk down my back and branching off throughout my body when I have that weird pain. The closest I can come to describing it is feeling like I'm having a migraine all over my body, complete with sparkly aura sensations and nausea and sometimes throbs. Oddly, pain medication doesn't touch this at all. Finding out that diabetes was probably making it ~worse~... wow.

You'd think I'd be relieved when all this started simply just feeling numb about a year and half ago, but I found that pretty terrifying. A few months ago during a follow up with a neurologist we had a great talk about how diabetes slows down healing, and since my body is still healing from nerve damage (nerve pathways take longer to heal than any other organ damage), the dysesthesia I'm feeling is probably indicating more healing, as the pain levels are going down since I started controlling my diabetes. He said every time I get sick I will probably notice an increase in the dysesthesia because illness also diverts resources away from old healing to overcoming the current illness. The best thing I can do for my nervous system is SLEEP WELL, good nutrition, great hydration, keep my stress low, and find things to enjoy to take my mind off worrying.

He's right, I didn't even notice when the weird numbness faded. Until now. Wow, I feel so weird today. I feel like my whole body is half cloaked in dark matter, I'm just not getting all the input into my brain from everything that's going on below my skull. At first it was pretty unnerving (ha, I love that pun so much), but then I remembered all this stuff and now I'm not worried. I've been through this before, mild numbness from my face to my feet, but I'm still walking around just fine, still breathing and thinking just fine, even feeling well enough now to get some chores going again.

I feel like it's getting pretty obvious now that I can almost trigger this weird dysesthesia with what I'm eating. I remember years of living with nerve pain, all those handfuls of pills, getting through every single day for decades was so hard but I was determined I could do it because I wasn't done yet. I never dreamed I'd make it to a place where a little bit of mild numbness would be my biggest worry. I mean, my eyelids are numb right now. It feels so weird when I blink. If you've ever had Bell's Palsy you probably have some clue what I'm saying. It's not the same as being numbed at the dentist, but it's kind of like that shot is half worn off and just stays that way.

I'm pretty thrilled that I've reached a day where I could get this all figured out and share it. I know a lot of people out there are having some wicked bad days. I know it's hard hanging on to any hope that you'll ever feel better. I know you cry. I know other people don't understand and you feel alone. And I know that sometimes your only comfort is the thing that makes you feel the worst, be it a med addiction or a sugar addiction. I know how much that blue popsicle means to you.

This post is a hug, and I hope you get your stuff figured out. And even if you do, I hope you want to feel better badly enough to make it through the hard part of turning your world upside down to change it, moment by long dark moment. The hardest part for me took about two years. Never cold turkey off meds, do your research first, keep a doctor in the loop, make a plan and clearly state your purpose, pre-apologize to all the people whose heads you're going to bite off along the way, and take that step.

Ode to Joy

I have lupus. It affects my brain. I've covered the loss of ability and severe depression I've been dealing with for years in previous posts, so I'm not going to repeat any of that.

This post is about looking forward. How can a person see a future with their brain falling out? I have been 'brain training' for several years getting ready, because it's not something I'll be able to control later with will power or a simple decision to behave a certain way or have a particular attitude. I've already had a taste of the mentally crippled lifestyle I'm headed for, and I know it could happen again at any time without warning, and I have no promise I'll pull out of it next time like I did this time.

 

In the confusion of forgetfulness and mood swings, there has to be a behavior foundation, a rock to stand on, a familiarity to flee to for comfort. I've known people who have gone through strokes, injuries, and illnesses that have affected their personalities, and the people who care for them. I know it's hard.

The hardest part is trying to keep the feeling of some kind of control as it's slipping away, or trying to get it back after it's simply just gone. That leads to no amount of frustration, anger, sadness. I don't want to be angry and sad. It seems to me that the best way to go forward is by learning to let go of everything now while I can, so that I don't try so hard to hang on and make myself, and whoever takes care of me, miserable.

 

Scott is my best friend. He sucks at romance, and he's not the wordy comforting type, but he's got an instinct for making me laugh like no other. Over the years I've developed a complete trust in him even when he does everything wrong and backwards. All I have to do is sit back and let him be the person he is. I don't have to watch what he's doing in case he's wrong because I ~know~ he's wrong. Our lives are very cartoony sometimes, and it's something I've learned to appreciate.

Because of this trust, I have experimented with allowing things to get ridiculously silly and just laugh with him at everything. I discovered a joy that you don't get with monitoring the moments for stuff going wrong. I'm not saying let the house burn down, but it's got to be ok for someone to burn the toast or even plow through a garage door (that happened at a neighbor's house) if we don't want to become bitter people as we age. It's ok for real life to be a silly sitcom or live out your own cartoon network.

 

Every day I practice allowing spontaneity to happen. I'm not a spontaneous sort of person, so this, I think, is key to my 'foundation' attitude when I start losing brain control again. Some days I forget things, important things, and aside from forgetting to write thoughts down as they happen into a list or something because I know I'm going to forget within minutes or even seconds, I just let it go. Even with my brain working pretty good this year, I missed my own daughter's 30th birthday, a milestone, especially as she's my only biological child AND she's pregnant. She told me several times she would be 30 weeks along on her 30th birthday. I knew it was coming, even bought her a card. A week after her birthday passed, I remembered. And a week after that I finally mailed her birthday card. I could have kicked myself and felt bad and either made a big deal of it or moped around the house about the epic fail, or I could make a funny story of forgetting my daughter's birthday and share it with people. Which I did. Mostly people are too busy with their own stuff to understand the portent of my funny story, that as young as I am, I am already suffering some memory deficit. But that's ok. It'll be one of a succession of funny stories.

I remember my grandmother and great-aunts telling funny stories about their marriages and families when I was a little girl. I was too young and inexperienced back then to understand they were dealing with emotionally difficult situations. I look back now and appreciate that my memories of my relatives talking together are full of laughter and silliness. It would have been such a drag to hear them all whining and moaning about how their lives suck, which seems to be the way people carry on nowadays. I don't want to be remembered like that, and it's not easy training myself to be a fun person to be around. I have Asperger's, I'm a natural born griper. Or rather, I'm a natural born pointer outer of incongruity, as it were.

 

The world doesn't have to be logical and make sense all the time. I married into the most illogical family I've ever met, and they seem to be surviving, albeit with mountains of inherent self destructive traits, but still carrying on the family genome into the future. Humanity has survived like this for tens of millennia. Just because I was born with a Vulcan brain doesn't mean I can't learn to enjoy the moments, right? And that's what I want to do, enjoy all the moments I have left. I don't want to be left alone with my crabby self in a room because no one can stand me, or because I'm difficult to interact with. Goodness knows I don't mind being left alone for long stretches, thanks to the Asperger's, but that's an aloneness I choose, not one that I get stuck with because I suck.

The little things are important. A color I like. Something good to eat. Watching someone else giggle or absorb themselves in something they love. If I lose my ability to understand the moment, at the very least I still want to be capable of enjoying it, and I think training my brain to let go of trying to interpret something intelligently to myself all the time is the first step. I'm a natural problem solver when my brain is working, and I'm very good at interpreting thoughts into words. But I've been in the place where strings of words don't make sense, where I can't follow a simple story on tv, where books turn into a gobbledygook of lost symbology. In those times, I can either wallow in despair and grief, or notice something is pretty or funny. My brain training requires that I spend time every day noticing simple things without thinking about them, and emotionally reacting with enjoyment. I feel (I hope) that laying this foundation as a learned reflex will help me and others around me cope better when the next lupus flareup affects my brain.