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.

new year spoonie assessment

Last winter didn't look terribly hopeful but it was a huge step up for me from winters before. This winter is amazingly way better than so many years past. What changed this year? Here you go, have a power point review.



The biggest thing was finding out I'm allergic to acetaminophen. I've been living on benadryl for so long, dealing with so many other reactions, never occurred to me I might be having a continual reaction all this time underneath everything else. I'm already banned from ibuprofen, so there's not a lot I can do any more about home pain treatment. Requires being smarter than ever before, avoiding impending consequences, not being stupid about overdoing and overextending myself. Pills are a quick fix anyway, not a cure that keeps you from crashing sooner or later.

The next huge thing was ASTYM, all the new rage in fibromyalgia treatment, based on postitive results with athletes. I spent 4 months in grueling ASTYM therapy, deep soft tissue massage for the purpose of breaking up hardened scar tissues for better blood flow and muscle control. That alone has dropped my pain level enough to exist without daily pain meds, hooray! I still hurt, and the pain levels can still shoot pretty high, but I've been given 'permission' now to do what I always found instinctual- dig deep where it hurts. Pressure points are key, and then stretching and exercise are crucial.

The biggest difference from last winter to this that I'm noticing is a serious lack of migraines. I spent last winter with the shades drawn and barely able to cognitively function, much less read. This winter I'm doing just about anything I want with minimal occipital nerve problems and greatly reduced nerve reverb overall up and down my spine. Again, still have some interesting pain, just way easier to live with. A neurologist has finally documented the body-wide dysesthenia I developed last winter as healing from an ancient car accident. He said nerves can take years to heal, especially after being thrown violently out of a car, and being very ill with lupus and diabetes and several rough viruses along the way stopped the healing process for awhile. I'm still avoiding alcohol, don't smoke, eating healthy, trying to get plenty of rest, staying well hydrated, exercising regularly, and not going over my fatigue limitations. I am trying to keep up higher protein and healthy fats in my diet since protein builds tissues and fats are vital for nerve health.

I am currently having a stiff knee/leg from carrying a 15 pound baby around while she was teething, but nothing swelling up so it's most likely frogged muscles from muscle strain. I see a chiropractor once a month and take zyrtec daily to help me sleep on the advice of two different doctors. The zyrtec also helps my body stay calm when it wants to over react. An allergist diagnosed me with autoimmune reaction disorder, says it's common for people like me to just start hyper reacting to everything, so there you go.

If you're a spoonie running into this, I hope it helps. Most insurance and medicare will pay for the ASTYM therapy, but you have to ask your doctor for the referral. Good luck with your stuff.

blinking in the light

I have never blogged about this anywhere. I've mentioned stuff in passing, but I've never really been honest. It is really hard to be honest about stuff sometimes when you get down to the very last thing you have left.

I suppose it's kinda like a really beautiful woman suffering from a life changing deformity or something. Or maybe it's like an athlete getting a career stopping injury. With me, Scott says it's been like Flowers for Algernon, only I started out super smart in the first place.

I have an awesome brain. It has gotten me through things that crumble other people. I got through a weirdly abusive childhood and skated past depression that would have most teens going down very self destructive paths. I have gotten through some pretty rough stuff as an adult that would have most people my age at the very least addicted to something. One thing that seems to shine during some of my therapy sessions with my psychologist is that I'm able to compartmentalize all kinds of things in my head.

I had a very nasty car wreck when I was 19. I've been dealing with hiding disability problems the rest of my life. I absolutely refused to admit or acknowledge I couldn't do some things for a long time. Maybe I'd just have to do them more slowly, or find other ways to get them done. Most people have never known the pain I've lived with, or know very little of it. Even Scott didn't know how bad it was the first 15 years we were married.

Things started crumbling apart in 2004 when I got Bell's palsy really bad. It wasn't typical at all, and between that car accident and an untreated Lyme infection as a teen, it would probably have been no surprise if I'd had a better doctor. I got very sick and had to quit work quite suddenly, but the palsy itself didn't show up for two more months. I couldn't drive for 4 months after it hit, and had ongoing pain and symptoms for years after the paralysis went away.

Along with the usual glitches, like losing the ability to taste my food or smell things properly, my migraines became so severe that I prayed to go blind and deaf if only it would ease the pain in the trigeminal nerves around my face. Over several years I lost the ability to do simple math or read more than one paragraph in a book at a time. I had to completely stop watching tv for two years. I managed to keep working for two more years, finding ways to hide my growing cognitive deficiencies. I even talked to my doctor about becoming a nondriver, because I was making such poor traffic decisions that I couldn't believe I hadn't had any accidents.

Whatever was going on also impacted my immune system. I picked up every little germ and blew it way out of proportion, taking weeks and even months to get over what most people handle in a week. I started having medication reactions and had a very scary reaction during an MRI to gadolinium contrast. I became so weak I could barely walk around my house for months, and eventually suffered an injury while trying to walk across my yard and couldn't walk at all without handfuls of medications for several months.

I knew in my 20's that I might have to face CNS Lupus. I was cleared of multiple sclerosis back then, but wound up getting other labels. I've spent my adult life hiding all kinds of medical problems from everyone around me. But in 2008 it got pretty clear I can't hide this any more. They kept saying it's not lupus doing this, I don't have lesions on my nerves or brain, but no one had a clue what to do with me because all the symptoms were there.

My brain fell out. I couldn't even hide my cognitive difficulties any more. My Asperger traits that I'd managed to sort of hide throughout my life surged forward and took over. By 2009 I was granted complete disability. At the time I was deliriously thrilled that I could bawl my eyes out over that, since I hadn't been able to produce tears from onset of the Bell's palsy until around 2008, and then only a tear at a time that shot nerve pain around my face like crazy. I seriously did not cry a tear for 4 years because I couldn't. I went through eye drops like you wouldn't believe.

By 2010 I had accepted that I'd probably never get my brain back. By this time I'd been on daily steroid for months and was crashing so bad on medication problems that I started getting off everything I could. Nothing was helping the pain, nothing was making it easier to live any more, so what difference would it make? It was all I could do to drive in to see my psychologist, which is about the only time I drove at all because the pain and cognitive difficulty were so bad. Scott bought all the groceries, helped me in and out of the shower, did everything for me.

I've been through some really hard stuff in my life. People I love have died. I don't travel well and can't handle car trips and vacations. I couldn't even get out in the sun for 10 minutes without breaking out in itchy boils. I couldn't go to work, or go have lunch with friends, or enjoy holidays. But I think the hardest thing I've had to face is watching my mind shut down. It's very hard knowing how dumb you have become when you sort of vaguely remember how smart you once were. The depression finally hit me, and it was so cruel.

I know now that I didn't have to go through all that by myself. I'm learning how to use my Asperger's to solve new problems now. I have an edge a lot of people don't have. I have my brain...

I'm learning that it's not the content of my brain that makes a person really smart. What makes a person smart is adaptability, flexibility, being able to use what you've got and create workarounds. I still have a really hard time with math. I aced college algebra on my first try taking the tests with an ink pen. Now I have to use a calculator to balance my checkbook, and I still get it wrong. The govt appointed Scott to be in charge of my finances. You'd think that's a given, he's my husband, but no, that means I can't legally be held responsible to do it myself. I still get confused in traffic, and get lost in stores. But something changed, and my brain is lighting back up again.

From 1 Kings 19:11-13 KJV - And he said, Go forth, and stand upon - Bible Gateway

1 Kings 19:11-13

King James Version (KJV)

¹¹ And he said, Go forth, and stand upon the mount before the Lord. And, behold, the Lord passed by, and a great and strong wind rent the mountains, and brake in pieces the rocks before the Lord; but the Lord was not in the wind: and after the wind an earthquake; but the Lord was not in the earthquake:


¹² And after the earthquake a fire; but the Lord was not in the fire: and after the fire a still small voice.


¹³ And it was so, when Elijah heard it, that he wrapped his face in his mantle, and went out, and stood in the entering in of the cave. And, behold, there came a voice unto him, and said, What doest thou here, Elijah?


I'm not a church person. I grew up in church, but I haven't been able to sit in one for years. I didn't put that quote there because I got any kind of revelation. It was more like I finally just let go and said God, you do it, I'm too tiny and I hurt too bad and I can't. Heal me. Make me good for people, because otherwise my life has become worthless.


I can't even begin to describe the last couple of years. It's been hard, and scary, but more like being belched out of a broken mountain and thrown out onto the grass, laying there blinking in the light, moving a little at a time, sort of remembering who I am.


All the things I have made in the past on the internet was me holding on through a terrifying avalanche. What I created was not important, but that I kept creating. What I destroyed was not important, but that I accepted letting go.


What I do now is me rejoicing that I have so far survived all of this and can once again create with joy. I wonder what I can get done before I have to let go again.   Right now just sitting up in the grass seems wonderful.

So a note in passing, in case anyone ever wondered, all the bright colors on dark background on most of my websites was so *I* could see my own work.