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.

mean is how I show my love

There's a new policy agreement I had to sign before my physical therapy assessment this time. They have so many no-shows and cancellations that they're losing a substantial amount of money flow, and THAT, my friends, is why insurance is so stupidly high. Don't blame it all on poor people and ERs. Blame the people who have insurance and medicare who are purposely noncompliant with care plans.

Physical therapy is hard work. It's not for the faint of heart. I've been there- in and out of wheelchairs, using a cane, needing a driver and assistance in and out of the shower, and help getting dressed. I know exactly what it feels like to be a burden and spiral down a black hole of hopelessness. I'm such a good friend with pain that I actually miss it when it's gone, because I almost get high off of it, even without meds.

It's so easy to take the whiny way out. I hurt. Yeah, join the club. I have a headache. My worst headache lasted 6 weeks and I got at most ten minutes of sleep at a time that entire time, because it was so bad I couldn't even lay down, so I hear ya. It's hard. So is having babies, and that's not stopping anybody. I can't do it. Then curl up and die, you big baby.

That's me talking to my head. I have said all the things everyone else has said. And then I kicked my butt and slammed my head into a wall and GOT TO WORK. I got pissed off enough to get up and do something about my whining.

It was hard believing I could do this. Every morning I had to actually literally SAY "I can do this." Sometimes it was just a whisper in my mind while I cried. Sometimes it was a hopeless defiant shout in the dark. But many times I really did say it out loud on my way in to physical therapy.

Yesterday was hard. I'm in a better place than I've been in years, but it was still hard getting through another assessment and core review. I'm not out of the woods. I can't just flop my body into a chair and pop pain pills when I sit too long. I can't be lazy without backsliding into more pain and disability and eventually major surgery. Yes, I can ask them to turn the pain off and risk paralysis and sepsis and a whole list of other possibilities in a 50/50 gamble, because that's what surgical pain management is. It doesn't fix anything. It actually harms the body even more so you just can't feel it. There's no guarantee how long it'll last, and once it's done you can't go back and undo it. I know too many people this has backfired on. It's way too easy to skip ahead to the last resort and then hear the horror stories- multiple procedures melting down into meth addiction trying to handle pain that simply can't be killed off. Procedures that went well but then catastrophic fail happened after a blood clot in the spine, making the disability so much worse than it was before. Pain being replaced with maddening numbness. Asking someone to cauterize a nerve is such a leap of faith, I can't imagine doing that unless I was ready to commit suicide anyway. My psychologist told me a few times I'm a cynic. That's putting it mildly. I look at it like this- if a surgeon tells me he won't do pain control on me even in radiology with a needle because my history contraindicates success (nice of him to be honest), then I'm going to find another way to live like this.

There is this wonderful program in place to help people who are sinking into quagmires of pain and disability. It's called physical therapy. It's there for just about everyone- medicare is very supportive, and most insurance plans will take the brunt of the cost. All it takes is a person telling their doctor they'd like some help with a specific pain- how to move correctly, how to strengthen that area, how to become more functional around the house. I can say from experience that it's like working miracles, but it takes participation. You can get a whole team of people in on it, and they'll all tell you the same thing- pain shots, PT, and even surgery all work better with regular stretching and exercise, and good nutrition and hydration. You wanna heal? Cut the crap. You don't make a car run better pouring sugar in the gas tank. You don't stick a cigarette in your dog's mouth. You don't give babies beer bottles. You don't pick a fantasy football player who doesn't make the workouts. The logic is sound. All we have to do is apply it.

Several years ago I made a decision. Do I want to LIVE? If I don't save myself, no one else has to. Get out there and GET TO WORK. It made differences nothing else ever did.

I went through a little backsliding the last 8 months, so I'm back in GET TO WORK mode. I'm slapping myself to get up and MOVE, I'm plugging my ears and singing lalalalala when my head whines that this is too hard, I'm gritting my teeth and psyching up and telling myself that actors and professional athletes are where they are because they were willing to work for it. There is nothing in this world saying a writer doesn't need that kind of one on one physical training, as well. Sitting in a chair writing words isn't easy. Anyone who thinks it's easy is an idiot.

I know I sound mean. Sometimes you gotta get mean if you wanna stick around longer for your family. Whining my way to an early grave is unacceptable to me. I've got things to do, people to meet, a world to change...

The Darker Side of the Force- Sith Lords and Carpal Tunnel

I think the reason the Force was invented was because of carpal tunnel. Everyone keeps dropping their weapons at inopportune times, just easier to will stuff to fly off a wall than hang on to your lightsaber. The worse your carpal tunnel, the more powerful you become in the Force.

My challenge is eggs. Well, anything smooth and curved that I can't hook a finger on or scoop from underneath well or catch on an angle. But eggs got so bad I stopped eating them. I know what you're thinking, all I have to do is just turn my arm over and cradle the egg till I get to where I'm going with it. BUT, first you have to grip it in order to get it to turn with your hand as your arm turns over... I have dropped so many eggs. It got so bad that I learned not to stoop and clean it up because I'd drop the next one, as well, may as well clean up two at the same time. Or three, you get the picture. Got the bright idea to grab the carton to carry over, dropped the carton, most of the eggs smashed. Use the two-hand-gentle-hug-to-the-chest method and then drop it at the destination. Some days it looks a little spectacular, like I'm tossing them around on purpose. Solution? Don't eat eggs.

Click for more fun stuff

Yesterday I learned all about a cool torture called needle EMG testing for if I ever snap and lash out on the world, except I got to learn it the hard way with the needles stuck into me. If you'd like to learn how to torture, as well, here's an intro. Some people make really good money doing this. After a bit of questioning, it became clear to the neurologist that my labor-intensive childhood probably ruined (my word) my hands, because I've spent my entire adult life dropping/throwing things. Years of milking goats by hand (yes, I'm serious), helping move hay bails, holding heavy animals still (imagine your children tangling with animals 4X their size or weight), and hand cranking meat grinders (I beat you all at 'organic living'), plucking mountains of chickens and pitting gallons of cherries, shucking rows and rows of corn and peas- my hands ache just remembering this stuff.

Click for cool behind the scenes info

I watch the Food Network for chuckles. I like seeing professionals sweat and freak out in Kitchen Stadium and noobs fall to pieces in competition shows.

Free plug, check it out

Fave SW comic routine ever. (language caution)


Actually went in for my left elbow, which turned out to be, laughably, nothing compared to what I didn't know about my right hand. Never mind that I've been living with every single symptom of carpal tunnel for years now, to the point of not being able to sign checks or tie shoes during part of my 40s. I'm being extremely serious, I literally could not turn door knobs or keys or can openers or even make a pony tail. Never once dawned on me that was carpal tunnel because I've had so much other nerve stuff going on all over my body anyway that I thought it was all part of the same thing. Apparently not. I thought I've been using my hands much better nowadays, can do all kinds of stuff now, so I was very surprised how quickly I crumbled when we started on my right hand. By crumble I mean uncontrollable weeping. (@bonenado would have fainted.) I barely had the power to point my index finger while that needle was poking in my muscle, pushing back was nearly impossible, like all my strength went super fail. I may have broken and confessed a few of my lesser crimes, but I never once slugged the neurologist, as badly as I wanted to. I asked him if anyone had ever hit him, which probably wound up in his notes...

Click for instructional video

(If you clicked and watched that video and want to see more, here you go.)

Solution for left elbow- stop picking Bunny up, because I keep super fibro flaring around the joint.

Solution for hand(s), YES, HANDSSSS, more surgeries any time I decide I'm ready for them. You know what this means? I'm up to four surgeries now any time I want them. My jaw dropped, b@*#k that. In the meantime, I have been commanded to REST MY HANDS. This means I'll be practicing surprise levitation on random people using only the power of my mind.

I hope to one day recruit an assistant to handle the lesser duties of my Dark Side while I continue to hone my Force choking skillz. In the meantime, every day I'm keyboarding.

a plan that works- spoonie survivalist

Yowza, back to start another round of physical therapy yesterday. Ideally, lower back core strength would be pool work, but being around the pool sets off asthma (chemicals?) and winds up counterproductive. I started out that way in 2008 and loved it, but breathing kind of takes precedence.

So yesterday it was back to balance workouts, and then deep tissue ASTYM, which I think actually gets more work done in half the time anyway because it pinpoints and concentrates on problem areas instead of continuing to use general overcompensation while strength training. I work with weights, balls, stretchy bands, and sometimes foam pads that force me to fine tune balance even more.

I am usually the youngest person I see in physical therapy, unless someone else has come in for athletic or accident related injury. Most of the work is older people trying to regain mobility and lower their pain levels. Since I've already been through nearly complete immobility and screaming high pain levels, I have a lot of empathy for them being old on top of it.

I was told by the very first doctor I saw in my mid-20's that I would be living in a nursing home by the time I was 40. Back then, before 'fibrositis' was a thing (now fibromyalgia), it wasn't that uncommon for people to wind up in severe contractures as they grew older, to the point of great suffering and losing ability to care for themselves. One of the focuses we learned in nursing school was how to care plan around patients with contractures. I saw very clearly where I was headed if I didn't get a handle on living with severe fibromyalgia complicated with autoimmune flare ups. Having diabetes with it makes it monumentally worse because ketones further slow down vital nutrient flow through the muscles. I watched my mother disintegrate into 'frozen shoulders' and severe physical and cognitive deficits before she finally died in a nursing home. If everything I'm going through is genetically inclined, I know exactly how it's all going to end.

click this for cute story

But not if I can help it! There is so much new knowledge nowadays. In 2008 I made the decision to taper off medications that didn't improve my quality of life in either function or pain control, and now I'm nearly free of meds. I put together a care team of my own that included my regular doctor (who refers me as needed to pulmonologist, rheumatologist, cardioloist, ENT, allergist, etc), psychologist, and chiropractor. I coordinated all this with my endocrinologist and gynocologist. It helps being in a system like Mercy that is software integrating all my medical info, but I started this self integration before they had that technology in place. It takes some effort and focus, but taking that first step to become my own health care advocate was the beginning of me changing my life. I know a lot of people who still have unsynchronized medical charts between widely disparate clinics and doctor groups, and I can see how this hampers the help they hope to get, especially if they're not very good yet at communicating to every doctor they see. My psychologist helped me learn to communicate my needs and goals to my doctors, and that made a lot of difference.

Disability is an unfortunate part of my life, and I resisted for years. I hid my problems as best I could until I quite literally could no longer function and started making big mistakes at work. It felt like my body and mind were closing down and I was trapped inside, and everything got really hard. It was hard to move around, hard to interact in social settings, hard to think. I even discussed becoming a nondriver with my doctor. My driving got pretty scary.

funny pix when u click

Fortunately, I discovered that Medicare has strong physical therapy support and encourages people to use their yearly programs that are designed to channel the patient's needs through one-on-one assessment and training. I couldn't see how this could help at first, but a new wave has been sweeping the country- ASTYM is all the rage now. I am one of the first in my area to go through comprehensive ASTYM therapy along with core strength training with several different therapists because I'm stubborn and want to get healthy. Because I accept that 1- I must work for this, 2- pain is ok and not to be avoided (many people stop because the pain doesn't stop right away), and 3- it really is up to ME being persistent to properly heal, I have regained not only a world of mobility I had lost for years, but also the strength and endurance to keep moving. I am able to do things again that I held no hope for in my future, and much of it with drastically reduced pain levels.

I still have rough days, weeks, even months, but I know now that I don't have to backslide to darkness and despair. It's up to me to be a vital person. It's my choice to work hard so that I can continue to be useful in this life. It took quite a lot of grit with no promise to cling to when I first started out. It's been 6 years since I began my first physical therapy. I've been able to avoid several spinal surgeries, many cortisone shots, and have probably reduced my fall risk by at least 80%. I'm not pain free and probably never will be, and every time I take a break from physical therapy the old stuff tries to creep back up on me. This isn't a cure. But it has become a lifestyle, and I'm grateful that I stuck through it this long because I'm reaching a place where life feels better, I feel happier, and I actually have hope for my future now.

I'm writing all this down because I remember how I used to search through the night for other people like me- how does one survive? How does one get through this hard stuff? How does one hang on when everything utterly sucks and life looks so sad? Especially in the wee hours of the night when there is no one to talk to.

I am drawing a road map. I'm finding my way through this jungle, and one day I'm going to make it easy for all of us to follow the map. In the meantime, this is me checking in on another prednisone taper and another round of physical therapy.

lol

back in the days when I hid from the world

This is from a private blog originally posted 11-11-08, long before I went public with how difficult things got for awhile. Blogging gave me something to focus on while things were really hard, and I made a few observations in this one about public perception of handicap while we were traveling.

Sunday

@ 12:20 p.m.

Scott's outside multitasking, I'm in here with football drooling over the smell of a punkin pie cooling down, and the Quack Attackers are stomping the Crazy Jaizzys big time so far. I'm sitting here hoping Scott doesn't get shot by some idiot out there. He's upset because someone snuck a vehicle down the hill across the road from us, and he got the binoculars and saw them carrying deer stands, so he's out somewhere on our lot (4 acres seems kinda big when it's all a tangle of woods on a 45 degree slope and you can't see anything through all the trees and brush) pounding in stakes so he can tape off our boundary. We should be able to shoot deer practically in our own backyard, but it's never happened in 15 years because so many people poach, and you know they're doing it if you hear a gunshot during bow season, like I heard today. So I texted our scores to him just to see if he'd text back, and he did, so no one has shot him yet. He's getting to where he tells me his walk route before he heads out now just in case he does get shot. Sometimes it's hard to believe we live in a nice subdivision where everyone seems to own an AKC registered dog.

Our weekend trip was pretty awesome, except I got really wiped out and we had to come on home. We shouldn't even be back yet, but I'm fine with it. I'll hafta wait till tomorrow to load the video and pix because football really impacts computer usage, so it'll take awhile. Got home after dark last night, so didn't check the chickens till this morning. Jaizzy's trough was still half full, so at least we know it's probably just a single chipmunk stealing feed, as opposed to a gang. We plunged into a cold snap, holding in the 30's, kinda doubt it makes it up to the 48 degree projected high, so Jaizzy pretty much stays in her house. She came out for leftovers out of a restaurant box this morning, so at least she's hanging in there. Not quite halfway to naked yet, but only one tail feather left, wings are half gone, underside fluff is gone, and there are patches on her chest that make her look she's a pillow walking around that got ripped open. Funny how white she is under all that red.

I don't get out much any more, so just getting out at all was a really big deal for me. We've mostly lost all the leaves around here now, but heading south we passed the color line and got back into more autumn. The Ozarks are gorgeous in the autumn, and we went through several ancient mountain ranges (so they're not as tall as like in Colorado and stuff, but still very rugged). Got to check the progress around Clinton where the tornado went through end of last winter, still looks pretty rough, some of the houses were abandoned. I hadn't been in Little Rock proper for about 20 years, and the change and growth was amazing. I mean, it was big before, but I think the highways had a bunch of babies.

Stopped at the North Little Rock information center, very nice lady at the desk, told her I mainly just needed to sight see from the car, and from there we couldn't get the poor woman off the trolley. Take the trolley, it takes you to all these neat places, you've gotta take the trolley, etc. Trying to get her to understand that I literally can't even take the trolley was a waste of air. The route was miles long, a round trip would have taken a full hour *without* stops, and I would have been screaming to dive right out while it's moving. But we thanked her, grabbed a bunch of brochures, and I wobbled back out.

After having seen the entire trolley route later and the patch of town I would have been expected to browse around, not to mention the big long bridge over the Arkansas River, Scott and I got to thinking about the public's perception of what handicapped is. You see Hoveround and Jazzy power chair commercials, but we so rarely see people out and about in public with them that they are nearly nonexistent. And you say Oh, that person can't walk, but you never really think about their pain level or what is really going on with them, and until you've gone through some difficulty, you don't realize what a challenge all this stuff is. So it's interesting learning how to gracefully handle letting people know my limits (which are much more severe than your regular wheelchair idea of simply not being ambulatory), and how to maneuver around my limitations without winding up just laying on a sidewalk and letting people step over me. When my disability case does go through, even if I have the chance, I doubt we'd get an electronic wheelchair just because they're so heavy and bulky and difficult to rearrange your whole life around, including the expense of a wheelchair accessible van and stuff. When we go out and park in handicap spaces, we try to leave the wheelchair access spaces open, because not all handicap spaces have that, although I've noticed the general public doesn't seem to be that considerate. And sometimes if I get a close spot, I don't even park in handicap because it makes no sense. Even Scott is noticing that handicap spots are sometimes further away from the destination than regular spaces, or they are lined out so that by the time you get the last one at the sidewalk, you are further from the door than if you'd parked out in the parking lot directly across from the door. So there is a severe deficit in the way the public laws understand and define handicap provisions to the public. For instance, I need a hand rail when I'm alone, so I walk along walls of buildings (if I had to carry a cane around I would be dropping it constantly, and a walker would be outright dangerous). Simply parking in a handicap spot doesn't make it easy. Being on a trolley would have been the most miserable thing I could possibly do in my condition. They aren't handicap trolleys, so you don't get dropped off at the door to anything, you have to walk the entire block to see anything or shop and then get back to the trolley, and then ride back, all in whatever weather and the least comfortable conditions and no opportunity to curl up and die quietly in a corner somewhere. I would never have survived the trolley. That idea just doesn't occur to people who have never lived with continual pain and severe fatigue. I *want* to walk, I want to do things, but I've got a time limit before I crash, and sometimes it's only 10 minutes depending on the time of day, the weather, whether I've eaten, how much I've already done, etc. And once I'm wiped out, it's over. Hard to believe I was unloading trucks and running a retail department just 5 years ago.

It was clear during this trip that I have gone really downhill since our last two trips. My tolerance and stamina level have dropped drastically. And Scott said he can tell when the pain spikes because I get so goofy and don't make sense any more. But back to the trip.

Some of you have picked up that I'm real big on the little things, right? I'm really frugal about shopping, but I'm totally against cheap. When I do shop, I know exactly what I want before I go, and I get it fast because my fatigue clock is ticking. Don't get me wrong, I love a good sale where I get like 80% off something, but I *will* pay top dollar for quality.

So you won't be surprised to hear that I paid $18 for about 5 ounces of premium loose leaf champagne oolong... Thank goodness we had the Tom-Tom to help us find this place, because it was quite a ways and over the river from our hotel, and took us through some really pretty and very hilly and windy residential and quaint old business parts, but we finally found the River City Gift Company on Kavanaugh Blvd. According to their brochure, they've been Arkansas' largest source of gourmet tea and coffee for 30 years (and now very awesomely cool gourmet chocolates and fine cigars and other neat stuff), and they've been featured in Southern Living magazine.

Now, you know Scott, he's a manly man. When he buys tea, he gets the Chinese stuff with no English on it that promises to enhance your brain and immunity and, well, your other brain (ahem), and the weirder or scarier the name or description, the better. So he bought about 6 ounces of Gunpowder tea for only $6 (I know, crack me up), and then he had to pick out his own little tea strainer ball.  The cup in this picture came from Caribou Coffee in Minnesota, a very manly combination with his manly loose leaf tea.

So anyway, champagne oolong is all the rage right now, also called 'white' tea. When it comes to your basic brands, I'm a Lipton girl for black decaf teas, Bigelow for green decaf, and I really dig Tazo 'calm', Numi 'honeybush' and Numi Monkey King jasmine green tea, Celestial Seasonings 'sleepytime', Pompadour rose hips and hibiscus, and of course I like Twinings and other stuff restaurants serve. I don't know why I'm so obsessed with tea, but I'm always reading more stuff about tea and trying new tea. I've tried so many kinds of tea (my mom was into loose leaf herbs when I was a kid, and my grandmother collected some really beautiful cup and saucer sets), some of them were pretty weird. I like Bigelow's 'Constant Comment' decaf orange spice, but lately I seem too sensitive to anything from oranges or citrus, so wah. So this direct import white tea is interesting, now I'm going to compare it to a big company white tea off the store shelf and see what I think. The older I get, the happier I am with tea companies regulating the flavor and quality for me. I once got what was supposed to be a really cool batch of loose leaf herbal tea, and it was so full of sticks and dust that it was undrinkable.

Ok, sorry about the jaunt off into tea. But you can imagine I was thrilled to get to go see this little shop first hand instead of through a magazine or internet page.

After the long morning drive and finding the hotel (near the McCain shopping mall, which I thought was ironically cool) and then finding the coffee shop, I was too tired to do more, so we stopped for supper out and then crashed at the hotel watching the new shows on SciFi. I did ok, thank goodness I took the heating pad, but next morning was able to pull off getting up and packed and going down to breakfast. But it was pretty clear I wasn't going to last much longer. Scott had wanted to go to Hot Springs again, which we visited around ten years ago, so I said let's go, and we were in Hot Springs by 10. Found a great spot to park right in front of the Arlington, where we stayed when we went down last time.

If you EVER get a chance to go to Hot Springs, you HAVE to stay in the Arlington. They are a full service hotel and boast several presidents and a whole bunch of famous people staying there, and last time I was there I got the full bathhouse spa and massage package and ate the most wonderful food in their restaurant. Unfortunately, I was pretty ill at that time, too, so I wasn't able to do much more than visit the wax museum across the street and take a carriage ride, but they have everything you need in the hotel, including a salon and shopping, plus amenities galore. This year I snatched a few info flyers off the table when I walked in, and they already have the menu out for a fabulous Thanksgiving dinner. This isn't one of those 'continental breakfast' hotels.  Unfortunately, I was already too sick to even think of checking in this year, but here is what you see when you first walk inside.
(this video is gone now, sorry)

Arlington Hotel in Hot Springs

    

View of the street from the Arlington's front entrance.

The reason we went over there is because Scott wanted to hang his legs in the hot springs in the park across the street....

visit to Hot Springs

    

Poor guy.  He had been having some severe shin splints and muscle cramping from doing hard work and was hoping that would help. It helped, all right, about burned his skin right off, and it must have done the trick because he hasn't mentioned his legs since. It's a miracle!

@ 2:30 p.m.

Thought I'd stick the time in there. I haven't sat here all this time. The Crazy Jaizzys finally overtook the Quack Attackers, and I'm hoping it holds because he's still got 3 guys playing tomorrow. This is really tense. I finished at 6-3 last week and I'm second in the league, and Scott was actually going to try to lose on purpose (he didn't try very hard) so I could wind up in the playoffs, because he doesn't stand a chance on that anyway. But the way he was ripping through points for awhile kinda looked like the fates were against me.

So back to the trip. After leg cooking, I wanted to go to Oaklawn. (Oaklawn Jockey Club - Horse Racing in Hot Springs, Arkansas ) I didn't get to go check that out last time I was there, so this time I *had* to go in, at least get a t-shirt. They are open every day of the year. Thank goodness there was a little tram running from the parking lot, but we were early and I had to sit out and wait. That horse is changed every year to resemble the year's latest derby winner.

We couldn't believe all the really old people showing up to gamble. They tottered in from every direction, most of them dressed up like they were going to a nice social function, couple of them nearly got hit crossing the street, and I'm not kidding. The screeching tires didn't phase them a bit. When it was nearly time we all queued up, and I think I was the youngest person there. Then the doors opened, and talk about stampede. Those tottering old folks ~raced~ up the steps in a flood around me while I was hanging onto the wall taking one little step at a time. Scott couldn't believe how agile they became. I mean, some of them were so frail we thought they'd fall over on the sidewalk. One really old guy was so skinny and shaking, you could tell he was starving to death and going to die gambling. I think he'd already gambled it all away and had no place else to go but into the jockey club to wander around until someone might give him food. I couldn't stop looking at him, almost felt like I was looking at a person I knew would be dead soon, and no one else around seemed to even notice him. He looked clean and neat, but could barely get across the street (one of the ones who was almost mowed down in traffic), and you could see in his eyes it was over. I don't know if he'd had much or even anything to eat in days. I felt so bad being near him, almost felt like angels were just waiting for him to fall or something so it would be over, but Scott told me not to worry about it, he made the choice to gamble it away and become like that. Scott's not a mean guy, but I think he was worried it was going to make my own day worse. Later on as we were leaving, I saw him wandering in front of the rows of screens, and no one noticing him and just waiting for him to go by and get out of the way. I told Scott I wondered if his spirit would haunt the place, and people would swear later on that they could see him still walking around. It was very sad.

By the time I made it up the steps and inside, I was hitting the 'wipe out' stage, where I blanch really white and can't keep walking and have to turn away from people seeing me while I concentrate on just staying able to stand up without doubling over in pain and gasping like a fish. There's nothing Scott can do but keep an eye on me and help keep steering me along when I'm able to move again. It took me almost ten minutes to make it from the front door to the main gambling, and by the time I got in there, all the old people were already settled in making their bets, ordering food, yapping about their stats and poring over their papers. I thought it was really cool going by the indoor paddocks where they do the final weigh and saddling and colors, except it's not in season right now, so no horses around.

Then we inched along and finally made it to the gift shop. Dang, that was at the very end of all the food courts and betting areas. Anyway, it was a very cool gift shop. They had ONE shirt left my size since it's off season, mostly just stuck with a bunch of kids' shirts. Mine was half price (awesome!) and had the Oaklawn Jockey Club logo stitched on it, so it wasn't just a screen print (super awesome!), and we found out they don't do sales online so my timing was perfect (uber ultra awesome!). And then I ran into the Trail of Painted Ponies display...  I'm not a collector, don't waste my money on pretties that no one can touch, but I fell in love immediately with Stardust, so Scott let me splurge and get it. I don't often purchase a memento of an experience or event, but I made it to Oaklawn, and Stardust is my memento.

After that I got a hot chocolate at the Pony Express grill, and Scott got their special of the day, which actually looked very good, a healthy hearty meal of beef stew over rice, steamed broccoli and carrots, and texas toast, and I was like wow, it looked like a corndog place... I guess they want people to really stick around, they feed 'em up. I've never been a gambler and could care less about even trying, but I thought if I were a couple of decades younger the Jockey Club would be an exciting place to come to work every day. But I was clearly done after the hot chocolate, and going down fast, so once we were back in the car I only wanted to come home.

It was a rough trip home, had to stop a few times because the pain was so bad and there was nothing else I could take for it, and the only relief was getting out and walking around. At one point my stomach suddenly hurt so bad I think Scott was afraid I was going to open the car door and just jump out on the highway. I think getting too tired and the spinal pain caused it, I don't know, but thank goodness for the great American kindness of free public bathrooms just about everywhere you go, because we were in the middle of nowhere and just happened on a tiny little store right about then. As I was walking out, a woman a few years older than me limped in on crutches, and I was pretty sure she has MS. Sometimes I wonder how close I might be to that extent of disability, but all these years they've never found any lesions anywhere in my brain or nervous system indicating damage (my doctor checked me for MS in my 20's, and I get regular MRIs on my brain, and I have a neurologist and neuropsychologist), so we have no idea if this, whatever is going on, is progressing or just a rough spell I'm going through. I'm wondering if I'm going down the CNS lupus road, but I've been wondering that for 20 years and I'm still functioning, so I guess it's a mystery. So anyway, we piddled VERY slowly around a couple of different Walmarts, picked up a few groceries to come home with, stopped for supper in Branson. THAT was just about a mistake. We forgot it was Saturday, and they're in full swing with their Christmas shows. The lights were really cool, though. Most of the pictures smeared to badly to see the Christmas lights, but I got this, whee.

The main strip was packed with cars crawling through, the restaurants were packed with busloads of older folks. Scott wanted to eat at Montana Mike's, and by the time we made it there I was nearly an unresponsive zombie screaming inside for a coma, but oddly, we got 'our' table in ten minutes flat after being told we had a 30 minute wait (we'd been there once before). We wound up with probably the best waiter we've ever had, and I was able to get a bit of a pill down and revive a little. It got weird when some woman came by and wanted to take our picture, but I forked over the $8 for the cute little keychain she made out of it. I'm really in no position to be fussy about that kind of stuff. How often do I even get out and have fun? I have proof on my keys now that Scott and I had a good weekend out, as the dead silver fox hanging on the wall above our heads in the picture can attest. I thought that was a strange omen, since we lost the duck to a fox last month, but the meal went so well it was almost like synchronicity, and I just went with it.

So today has been nice. I'm glad I got home to my own bed before it all got worse, and I made fish and chips for lunch (my chips are fried up with onions, mmmmm), and the laundry is nearly all done and I made punkin pie... And I'm cuddled in my fuzzy robe while Scott runs in and out doing stuff. Buncha birdies in the feeder, chickens are happy we're back. And football. Lotsa football. Hope I crunch the Quack Attackers.