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.