wizard level health management

Tossing this one over here. I probably put way too much of this stuff on Pinky blog.

The Good- I got boosted to moderator on my fave game server this weekend. 😍

The Bad- I think I've overshot my tolerance level for Nick Jr. Can't wait for snow days to stop happening.

The Ugly- Currently overlapping tamiflu and z-pack, doubling all my antihistamines (zyrtec- long acting H1, benadryl- short acting H1, pepcid- H2), requested inhaler, hopefully that gets filled tomorrow. Crazy weather changes and living in cedar/juniper country brought a pollen burst upon all the flu/crud/cold suffering in my area and there are alerts going around now about asthma can kill in these conditions. Lungs are clear but bronchials squirting like lawn sprinklers reacting to the pollen and I'm racing to stay ahead of all the wet in there, crossing my fingers I don't wind up on pred. Can't take cough meds, so I'm doing what I can not to cough, but the resulting upper torso fibro flare is real and today was charley horse hell around my entire ribcage for awhile, literally couldn't move for about an hour and just stood around attempting to stretch some of it out without triggering it worse. Ear pain has reached suckage level. Throat feels punched. Eye slime is starting to dry up, so that's a good sign. Thrilled I never once developed a fever while influenza B was active in my household.

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Tomorrow I make two trips into town, which means 80 miles of driving. Really hoping Wed and Thurs are real days off for me. I desperately need to decrust my kitchen floor and reclaim a few surfaces. Have started spring/summer planning aka it's time to watch the super sales and replace clothes wearing out. I'm still in a lot of the clothes I got before Bunny was conceived, which means most of it is over 5 years old, and as frugal as I am, I've been wondering for several months now how a particular pair of jeans hasn't poofed away like dust.

Pain management needs to happen, but I'll be taking it much slower this year. Neuro said I could double gabapentin as needed since it's a baby dose (does NOT work like tylenol or ibuprofen or opioids), but we all know I won't just sporadically do that on whims after what happened last year when he tripled my dose and I had to cut that back down. I'll be touching base with the arm/hand surgeon in March, hoping to wind back up in occupational therapy on arms for another try. Of all the things I've been assessed for, no one has actually looked at arthritis in shoulder, so this could get stupidly painful in therapy. I'm keeping range of motion ok, but losing strength and grip through the range of motion, and the pain is referring like crazy last few months. Will also be assessing feet around that time, although neuro says indication is arthritis coming on in hip joint and referring to feet. This is on top of neuropathies I've had for years from injury and flares, so I'm wrapping my head around getting a controlled burn/crash plan in place for the rest of my aging. Totally dreading going back on full meds. Most of the time I'm too busy to think about this stuff, but experience keeps tapping me for attention and reminding that putting it off too long will mean more work getting control over it later.

Have to stay healthy! I breezed through gallbladder removal recovery and a house full of flu victims last 4 months, so it's actually pretty exciting that I have gotten such good control over my health planning that I'm not the one dragging everyone else down for a change. Water, proteins, raw veg, good sleep, and taking the time to move around and keep up my stretches and nerve glosses, was even able to start walking a bit again this month. Keeping the allergens down in a house full of people has been challenging but I'm a washaholic with anything laundry, Scott compulsively vacuums, and we have HEPA air purifiers in several rooms. I know my CPAP has made a huge difference since I breathe through more filters in my sleep. Pre and probiotics are a big deal, too. Healthy gut, healthy body. As long as I control my glucose levels and keep up all the rest, I can take fewer pills, less impact on my liver and kidneys, faster healing, and now I've leveled up to fewer actual sick days for the first time in a decade, and that's with a small child bringing every germ from school into the house. I worked really hard getting here.

things that have dramatically impacted my depression and anxiety levels

I know this is going to sound crazy, but I'm a long-time depression survivor, and this is trew.

1- The sudden wheat allergy last year that had me in clinic and 2 ER visits and put me on prednisone for 17 days was a godsend. There's a rumor going around that wheat might be a big culprit in depression. After being completely wheat free for nearly a year now, I can totally vouch for that. I have no idea if it's related to the big Monsanto GMO wheat monopoly thing, but there seems to be some science developing behind it. The severe brain fog I lived with for years is mostly gone, although I still hit walls and have glitchy moments, my memory is getting better again, and my ability to deal with spontaneity and change (I have Aspergers) is getting better again. I don't seem to need as much shutdown time, and I seem more able to steer it now instead of caving to it. I'm not saying the original brain fail was caused by wheat, just that nerve healing (the brain is nerve central) seems to be going a lot faster without it.

2- Regular zyrtec is making it possible for me to drive without delayed PTSD Tourette's behaviors, like tapping my steering wheel because I'm afraid to touch it, or not being able to stop blinking while I drive. I've discussed these anxiety behaviors with a psychologist, because they go back years. I've been rolling down all the windows in the coldest winters over severe claustrophobia while I'm driving, to the point of even pulling out of heavy traffic so I can exit my car before I have a meltdown. I've tried all kinds of meds (highway patrol has driven me home 'drunk' on meds in years past), and all kinds of behavior modification techniques, as you can imagine. (I trigger easily, thanks to being thrown out of a violently flipping vehicle, so it's amazing I drive at all, especially with the pain levels I've had through the years.) Last year I was COMMANDED to stay on zyrtec since my food reactions were going ridiculously more out of control, and I discovered that zyrtec crosses the brain barrier differently than other antihistamines and a regular dose has a very calming effect on me without making me sleepy. I've been able to drive like a normal person and have gotten through a whole winter and a very rainy spring and summer without having to emergency call family to talk me through driving home or constantly send update pix of where I am to facebook or twitter. After seeing such a huge change, I have to wonder how much of my severe anxiety had more to do with a continual overwhelming barrage of histamine reactions than anything. This is not true for everyone.
Cetirizine: actions on neurotransmitter receptors
The Zyrtec Effect
But this may be why it works for me. That's right, they're discovering anxiety (in some people) might be related to histamine over reaction.
Fibromyalgia Trial Shows Promise…For Chronic Fatigue Syndrome? Mast Cells and Ketiotifen in FM and ME/CFS

3- ASTYM treatments in physical therapy coupled with regular chiropractic adjustments have lowered the screaming pain levels on my nervous system more than anything else I've tried in years (and I've tried everything but surgery) and considering I've actually asked a dentist to do root canals on healthy teeth and sometimes think it would be lovely if someone would just severe my spinal cord in at least two places and put me in a wheelchair, my whole life turned around over this very simple technique. Lowering the pain levels dramatically lowered the stress on my nervous system, and that has made dealing with anxiety and depression much easier. There is nothing lovelier than physical therapy where you get one on one personal touch through massage and strength training, which has done me so much more good than medications. At first it was hard because I can't bear to be touched (super aspie + pain syndrome), but over time it became a real life saver. To give you context, it took four years to break through the nasty pain just under my skull because the scar tissue had grown so thick and was creating so much pressure and swelling around my cervical nerves that I couldn't even look up at the stars for years without nearly passing out. The scar tissue was the key- microfissure and slowly rebuild new more elastic tissues, and it works best with regular stretches and exercise. I'm actually sleeping nearly through the night now, after many years of not sleeping more than 2-4 hours through the night, even heavily medicated. More sleep and less pain eases anxiety levels.

I actually owned one of these.

4- I've noticed letting my glucose levels slip up (I'm diabetic) has an almost immediate effect on whether I go into a depression plunge, which is easily masked with meds and distractions that keep me from connecting those dots. Since I don't control with meds (my doctor pulled me off over med intolerance), I must be vigilant and aware of exactly what I'm eating all the time. Since I'm no longer on head meds, I've been able to see how immediate and drastic something as simple as snacking on a couple of cookies is when I haven't had any other food in several hours. My worst anxiety attacks used to come on mid-morning, and after I found out I'm diabetic, it was easy to see the pattern after a typical carby breakfast of cereal, pancakes, french toast, etc. If I don't want to blow the rest of my day on a sugar spike induced anxiety attack and then down a depression hole as my brain and body fold up trying to deal with that, I steer widely clear of anything carby before noon, and only sparingly the rest of the day. I wrote a post a few years ago, Holidays with Diabetes- Easier than You Think, in which I show how a person can still continue to have sweets all day in very small amounts as long as they avoid carb loading, but I've noticed since then that eating like that is like teasing depression all day long until it blows up into anxiety, so I've stopped doing it. If all you had to do to control your anxiety and depression was stop drinking soda and eating donuts and cake and french fries, would you do it? I've lost a sweet amount of weight over it, so I really don't miss 'comfort food' any more.

5- And that leads to small meals. Over time as I've fine tuned my metabolic and chemical default states, I've noticed that even when I watch the carbs, I feel much better through the night when I don't fill up on snacks in general before I go to bed. I've spent years waking up to full blown anxiety out of a dead sleep, and that lately seems to have gotten better all by itself just by not eating after 6 p.m. They say don't eat for a few hours before bed to avoid heartburn and GERD, but it also works for other problems, too. I've been through severe GERD, which can be dulled by continually eating or even just drinking milk, but when you add diabetes to that mix, you can get full blown heart racing in the middle of the night, and then doctors increase your blood pressure meds and put you on more anxiety pills, and as time goes on and on, you become high risk for sleep apnea and dying in your sleep from medication overdosing.
Anti-anxiety drugs, sleeping pills linked to risk of death
Popular sleep medications associated with increased risk of death
Anxiety attacks in your sleep are your body kicking in keeping you alive. If you are having anxiety attacks in your sleep, the fastest and most drastic change you can make is to stop eating before bed.

There are a lot of people on the webs describing their lives with some pretty nasty sounding anxiety and scary depression. I've been there. Years and years of it. I've been a pharmaceutical guinea pig, I know the walk in clinics and ERs like I know my own house, and my family is so good at automatically watching out for my triggers that I feel like I've really dragged their lives down sometimes. My body has become so over sensitive and hyper aware of every little bitty change inside and out that I only feel safe in my own home, and living like this is ridiculous. This has nothing to do with will power and mental illness, but living in a body that can't calm down because I've trained it for so many years to stay in fight or flight response. Well, it's starting to calm down now, and I'm loving it.

I discovered all these things accidentally. I don't think doctors have a big picture yet, but they're working on it. I grew up on homeopathy, and guys, it doesn't work. It's just training your nervous self to compulsively pop more pills or whatever. Discovering I'm allergic to chamomile tea was an eye opener, most people don't even think of that. Anyway, if you want to feel better, get better, have more control over the pain and depression and anxiety blowing up and shutting down your lives, do these things-

-Get a glucose meter and use it religiously if you are diabetic.
-Find a good chiropractor, AND talk to your doctor about physical therapy for the pains that ail you.
-Take advantage of your medicare (it pays for PT) and insurance (they pay, too, somewhat grudgingly, but beats having surgery, which should always be a last resort unless it's a medical emergency).
-Stop lying to yourself about it's ok if you have this bag of chips or that pint of ice cream.
-Reconsider using meds to slap bandaids over what you can be fixing yourself. I don't know about other diabetics, but I get nasty headaches when my high blood sugar comes down too fast, and since I'm allergic to tylenol, I monitor my carbs instead of popping pills.

And the biggest part of making a new Plan is
-TELL SOMEONE. Get other people in on the changes you're trying to make. You don't have a safety net if you don't tell anyone what you're doing. Or keep a journal, write it down, blog it, vlog it, share your experiments, then look back a year later and see if anything has improved.

There is no such thing as instant success. My brain crash was in 2004, my body crashed in 2007 between a slipped disc and a nasty CMV infection on top of undiagnosed diabetes. I made a PLAN in 2008-2009 because I honestly felt like I was dying and nothing was helping, and my life really started turning around in 2011. I finally broke free last year, healthiest I've been in over a decade, able to take care of myself and do my own shopping, control my own problems, but it took a plan with a set of long range goals, a team that included doctors, chiropractor, and psychologist, and my determination that I didn't want to die yet. I was so miserable and my life sucked so bad, and now it's all a nightmare I woke up from.

I was there. Fat, crippled, ugly, and a really scattered mess. Don't blow off what I'm saying.

If you knew you could save your life and be boinging around feeling good ten years down the road, would you do it?

Stop eating that crap. Decide what you want. Make a Plan. Write it down. Set goals. Tell someone. Create a team. Start a new habit of living better one small step at a time. In ten years you will feel better and look better and be glad you're still alive. Even if you still live with depression and anxiety, you might find it easing up because your body is doing better.

Most of all, stop kicking yourself. Doesn't matter over what. Self defeat is the fastest way to sink.

If you are also struggling with alcoholism, I wrote this.

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!

medic alert tattoos

As per yesterday's wheat allergy post, really tired of phenergan for awhile. I've had 2 IV pushes in 2 weeks and the most common phrase associated with that drug for nasty side effects is 'corrupt the vein'. Same vein, same place, second person was young and impatient, it went in fast and hard and hurt like crap. I asked her to stop several times. Wonder how many patients she has 'corrupted' being impatient. We're talking necrosis and surgery to fix this kind of stuff when it's done wrong. (Bet you guys didn't know there is a whole branch of science about how intravenous meds affect veins.) So far everything is looking ok, but my whole arm ached for 24 hours. Not to complain too much because I know people who've been through far worse, but that same vein has been blown out during pre-surg prep, ripped open tearing out the IV on a handicap bar in a bathroom, ripped again Thursday getting the IV out, blood everywhere... I'm about ready to get a tattoo down my left arm that says DON'T USE THIS VEIN. There are a bunch of medical tattoos on pinterest, click this if you want to check it out.

nutrition is taken for granted

This post is a desperate attempt to rip myself away from twitter on my phone. I've been up since 2 a.m., thank you solumedrol, and now I need to pull all my focus into getting out my door in a couple hours for an appointment with a nutritionist, which cracks me up. Gonna be fun meal planning around nut/peanut (includes mangos bcuz in the pistachio family), all citrus (pervades all things that taste good, avoid 'natural flavors' that spike flavor in prepackaged foods including salad dressings, sauces, and condiments), the bananas-avocado-potatoes trio because of latex, and now wheat. Which I'm really not supposed to be eating anyway because I'm controlling my diabetes without meds, and wheat in everything spikes glucose as badly as sugar does. I'm looking forward to a very interesting meetup, and it had better be for $84, because insurance isn't paying for this one. I figure I need the moral support right now, though.

Since my parents didn't believe in doctors and I was so terribly aspie (failing to communicate well) through most of my adulthood, it took a really long time for me and my medical team to figure out I'd been living with food reaction induced asthma for several years. I lived on cough drops for a decade before I got an inhaler, and then lived on advair for 9 months before it dawned on anyone I might be having deeper issues. When I finally found out I'm diabetic and changed my diet, a lot of that went away because I was severely curbing the carbs, and I discovered a carb rich diet was also causing other problems like IBS and bad headaches. Lost 50 pounds and started feeling a whole lot better.

Then the airway problems ramped up. Cashews were first, and it was nasty. I'd been eating cashews for years, so that was a big surprise. I was already suspicious of peanuts and had stopped eating anything with peanut butter because I was tired of the itching, but that blew up along with the cashews, and now I can't even touch something else that has touched something with peanut in it without itching and actual swelling. I purged my house. Then came the lemon. I'd already cut out orange juice for severe heartburn and limeades because my mouth went numby and tickly, but I love everything lemon. When that finally scared me with airway, I was almost devastated to give up lemon juice sqeezed on crabcakes and the rare piece of lemon pie, my fave dessert in the whole world. It's terribly difficult to purge citrus. Lemon isn't legally bound to be listed as an allergen and can get away hiding in ingredient lists in the form of 'natural flavor' in everything from salad dressings to condiments and sauces. I started making my own salad dressing. I was thrilled to find Annie's condiments and dressings, I can finally eat ketchup again without a reaction. Click this pic to go the to Annie's site. It's my way of saying thank you to them for helping me enjoy eating with all this going on.



So. Now it's wheat. This is my second round of steroids in 2 weeks and I got the rash this time along with the itchy tongue and croup. My allergist told me last year to take 2 zyrtecs twice a day and eat anything I want, and if I have a reaction then throw in some pepcid and claritin, crank benadryl round the clock for a couple days, and if I decide I can't live with the reactions, go in for steroids. Well, besides no one being able to live on that much zyrtec (my regular doctor pulled me off it after 3 weeks because I was such a zombie he was afraid I'd have a traffic accident), it's actually kind of dangerous to just keep putting your body through continual autoimmune reactions. And dumb. And sucky. Very, very sucky. No food on this planet is worth the suck I've gone through.

Let's put this into perspective, for those of you without food allergies. I can't walk into a bar without risking my life thanx to nuts and citrus. I can't eat anything out of a deli, fast food, or restaurants because of cross contamination with allergens. (Believe me, I've tried.) I can't enjoy other people's homemade goodies or potlucks no matter how diligently they try to cook for me because they don't realize how cross contaminated with allergens their kitchens already are. I check every single package before I handle what's inside or eat any of it. I'm braced for a reaction 24/7 everywhere I go because people naturally eat candies and foods and touch everything without washing it off their hands. And NOW I'm facing no birthday cake or nibbling on holiday goodies. Not even an oreo, which is peanut-free if I stick to the regular Double Stuf.

I hope you guys appreciate how much I really don't whine about this. And I hope I never ever EVER become allergic to chocolate and dairy because Hiland chocolate milk and packaged cheese is my go-to on the road.

Ok, those thoughts are organized and pushed out of the way now, time to wash my hair and get ready for the nutrition counseling.

autoimmune reaction disorder

I'm one of those lucky people who gets to carry a bottle of prednisone and an EpiPen pack around with me everywhere I go and then never uses them because I'm so freaked out by everything around me possibly causing death that I'm terrified of touching or eating stuff and generally slam a handful of chewable benadryls and make it to a clinic within enough time to get supervised treatment. My nearest clinic is 10 miles away and isn't even open to walk ins most of the time, so I wind up driving about 20 miles. My worst year, yes, I did call an ambulance and got emergency breathing treatment in my driveway because I had a bad reaction to my inhaler. We didn't know at the time I'm allergic to the propellent, but my doctor switched me to a different inhaler after that.

I'm also freaked out by allergy meds in general. Zyrtec, for example. When an allergy doctor tells you to take 2 of them twice a day forever, you go full blown zombie. By week three my regular doctor was disturbed enough by my behavior changes that he pulled me off it. I also weep when I use Flonase. I have no idea why, but one dose of that up my nose, while wonderful for my nose, induces such severe depression that the world stops point blank and I'm on the couch in a ball hugging a box of kleenex. These are just examples.

Diphenhydramine is my best friend. "May cause excitability." I'm one of those people who doesn't feel sleepy on Benadryl. I get really tired of it, though, so I take breaks. Taking a break at the height of ragweed season probably wasn't a good idea. I play a balancing act with my histamine levels (yes, I'm acutely aware of them)- if I stay in my house and don't do anything that will upset the balance, I can hold the benadryl down to a very low maintenance dosage (I know, benadryl isn't a 'maintenance' allergy med), sometimes just one chewable tablet every 12 hours. Of course, stuffing my face on a bowlful of yummy stuff I hadn't eaten in months and forgot was questionable wound up being a ridiculous slam through intravenous steroid the other day, and then a weekend of nerve-racking prednisone. THAT is the kind of thing the high zyrtec forever dose was intended to prevent. I'm not really allergic, per se, like the zillion things I react to don't show up on allergy testing, but since my body responds so thrillingly, I've been tagged as having an autoimmune reaction disorder, which can be every bit as life threatening as a real allergy. Most people diagnosed with that just do the rash/hives thing as a sort of lifestyle. I completely skip that and go straight to airway.

My biggest fear is that one day I'll start having reactions to the meds that are supposed to control the reactions... I try not to think about it. Once in awhile I entertain the notion that I'll ironically croak off from cytokine storm, having lived past several other things that could have killed me by now. If I ever suddenly disappear and never come back, just assume that happened. I know I've disappeared off the internet before, but I'm hoping I'm back for good because apparently keeping in touch with the outside world via keyboard has been so good for my depression that I gleefully get to skip head meds and not risk having more reactions to more pills, yay!

The point to writing this out is so I can get it out of my brain and get on with my day. If you are a 'canary in a coalmine' person, you're not alone. Consider this your virtual hug. I'm sorry it sucks, but distraction is awesome, so go find some!