~secret code stuff~

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Currently (2020) my most updated blog is pinkfeldspar.

Spaz is a useful side blog for sorting other stuff out.

Thursday, December 14, 2017

try not to bend

click animations for lots of cool dividers
I am so hungry. I run into all the horrible things people write on the webs about recovering after gallbladder removal and it's just easier not to eat much. I slipped up last night and had my first 'big' meal (I'm 4 weeks out from surgery), ate 5 homemade chicken tenders and spent the night with a bit of a racy heart, like I was in distress. No pain, no nausea or anything else, but that was uncomfortable enough to slow way down on the food again today.

Oatmeal is a life saver. I eat half a serving because diabetic and carb counting (not on meds), and that pretty much controls whatever bile problems might erupt, guess it just kind of absorbs it like a sponge. I also metered out a rice hotdish for a few days with just 4 ingredients- sticky rice, canned chicken, shredded cheese, and broccoli cooked soft enough to crumble up. Stir it all together and add a little onion powder, get it all hot in the oven, and that is a great way to get a little bit of protein and veg and the rice slows everything down and kind of acts like a sponge like the oatmeal. The key to it all, though, is small portions, hold the work detail way down while my body gets used to a missing organ.

The rest of my body is screaming bored. Now that the overwhelming referred pain and constant localized clamping down on inflammation and staving off possible infection is out of the way, my body is no longer having to work so hard keeping an ill organ under control, so the rest of my cells are getting better shares of incoming basics, like fresh nutrients, fluids, oxygen, rest, etc. No more sacrificing for that crazy inflamed gallbladder, right. Except now, healing makes that area a protein hog and I'm feeling a bit STARVING FOR MEAT, lol. Thank goodness I seem to be handling a little bit of milk and cheese ok. I don't think I'll have any more chicken tenders for awhile...

So I guess this is a big deal. At first everyone was all like yeah, you'll be good in a couple of weeks. A month later I'm still running into stuff in med forums about 6-8 weeks and don't lift ANYTHING over half of what they told me I could lift after 2 weeks. I'm finding stuff like this on everyone from professional athletes to super spoonies at death's door. Rule of thumb is give it a couple of MONTHS and even up to a year (or two) to get back to some kind of normal. O_O

I don't see a lot of people writing out exactly what this feels like unless they're freaking out, so I'll point out that the laprascopic punctures combined with the air puffing up the abdomen combined with the digestive system going into shock for a couple of weeks combined with the body overall readjusting to what is basically stab wounds, organ theft, and possible complications that include little bits of fevers here and there, to me mostly feels like I did too many situps the day before and now I feel like I need to be a little more careful doing things. And if I'm not as careful as I should be, I feel it pretty quick, and trying to power through makes it worse. Like, I mopped my kitchen floor last weekend, and I felt that for 2 days kind of thing, so I laid down a lot in between chores during the week.

I've been able to get out to Walmart for some light shopping, and I'm keeping up ok with laundry and dishes, but I'm very tired most of the time. It's funny because being spoonie, even though I'm actually feeling fantastic having that inflamed gallbladder out of the way after 9 months of croaking off with it, I hit that fatigue wall super fast because recovering from such invasive surgery isn't the piece of cake it sounds like. I mean, it's way better than being sliced open, for sure, and getting to come home right away was definitely preferable, but getting a routine back has been a bit of a challenge. I haven't helped much at all with anything holidays, and I understandably pretty much stopped cooking.

Bending is the worst. Too much bending, like tying shoes or picking stuff up off the floor, is like instant bloat reaction and the rest of the day is very uncomfortable, especially to drive or sit and watch TV. Standing up feels the best, walking kind of helps if I'm not too tired, and laying down doesn't feel as good as you'd think it should. If you have any kind of abdominal surgery, get one of those long reachy clamp on a stick things that help you pick up stuff like a sock off the floor. Bending seems to really aggravate, maybe because it puts more pressure on where it's still a little swollen in there.

If you have pets or kids, they will destroy you just bumping around, even weeks later, so keep your automatic guard up and put a hand or arm up before you get bonked anywhere on your stomach. And seriously, don't lift much. Buy your milk in half gallons, stuff like that. Don't be stupid and lift a frozen turkey or a watermelon. I really don't know how people with small children survive surgeries. And if you live alone and have to walk a dog at all, you probably need to just plan on offering someone some cash or a gift card to help you with your pet for the first couple weeks.

This hasn't exactly been a piece of cake, BUT I am apparently very healthy and healing very fast, compared to the nightmares I'm finding online and hearing about from other people I know. I have been working very hard on regaining my health since 2008, the most improvement coming since 2011, with one of the top goals being to get healthy enough to survive surgeries without complications and hospital stays. I changed my diet, committed to physical therapy, started exercising, got help with my sleep disorder, touch base with mental health regularly, managed to clean off handfuls of meds over several years, and am now passing the test with flying colors. I am exactly where I want to be with my health in time for the real deal. If this surgery was done 9 years ago, I'd have wound up admitted and probably even in ICU and then convalescing for months, so it totally paid off to map out a plan and then commit to the step by step process, even though it took a long time and most of it was pretty hard.

I will be 60 in 4 years. By the time my mom was 65 she was in a nursing home. I will not go gentle into that good night. I will not bow to my fate and call it natural aging after a lifetime of sugar and intermittent bouts of heavy smoking and drinking. I refuse to own the mess I made of myself and accept it as 'life'. I want back everything I wasted and robbed from myself, and it's my job to make sure I don't become the burden I would loathe myself for being.

I am so hungry. But it's a good hungry. It's a very healthy feeling compared to the months of swan diving into any distraction I could trying to ignore the problem. I'd rather be a little hungry than in a  hospital.

Surgeries aren't fun any time of the year, but I can say first hand they suck during holidays. If you are having surgery or in recovery this month, bless your hearts. 💗 I hope it all goes well with you.

this also comes in purple
By the way, if you are looking for holiday gifts for older or challenged people, check out home medical supplies in your local pharmacies and retail stores online and point blank ask them if they need any of that, or would they like a gift card. An easy reacher is an awesome thing to have around the house, just saying. 🎄

Sunday, December 3, 2017

the unforeseen complications of cervicogenic headache after surgery

click pic for great article

A Headache From a Pinched Nerve

So many years of physical therapy, strength training, mobility work, chiropractic, and massage for a nasty whiplash from an ancient very nasty accident that healed with all kinds of scar tissue hardened throughout the soft tissues, all nicely undone during one little surgery requiring precautionary airway during anesthesia.

I have everything in that above 'headache' link's list regarding causes for cervicogenic headaches. Another outstanding article is Cervicogenic Headache from the American Migraine Foundation.

I've thought a lot through the years about what it must have been like for people who've had their heads chopped off. Guillotines were heavy enough to lop them off quickly, but someone hefting an axe over another someone held over a stump could easily rebound off a cervical disk. I mean, I've actually done that butchering chickens in the old days, and I hated it. Chopping through neck bone isn't easy, especially when someone is squirmy, and getting a clean lop requires a confident and meaningful downward swing with a good axe. When I hear in the news about journalists' heads being cut off in other countries, I know it's not quick and that they suffer quite badly.

Television makes it look easy. Characters with nothing but swords whop heads off left and right, no problem. If our heads could come off that easily, we'd all be losing heads every time we fall down the stairs or on a patch of ice. Our necks are almost like a string of crochet or macrame, all those interlocking pieces with really tough fibers wrapping around and through it all, because the nerve trunk must be protected at any and all cost. Mother nature made sure our necks are super tough with lots of bone in the way.

I'm a great example. I was thrown out of a flipping car and hyperflexed my neck so hard that my ear was pretty much on my shoulder as I was flung out the window. I was conscious and remember the entire thing. My neck bent like a tree under a tornado hopping around. If you've never seen a solid tree bend in a wind wall, it's really freaky. Trees aren't metal poles, and they can take a bit of bending before they snap. Ice on branches is like that, too, you wouldn't dream a big branch could actually bend so far down and still be ok after the ice melts. Human necks are like that. They don't look like they could really be that bendy because our necks are so short, but mine bent like a spring board shredding all the soft tissues on one side, and how my neck never broke is anyone's guess.

Amusingly, I ran into this doozy just this morning. They still make it sound too easy. Most people aren't strong or practiced enough nowadays to pull this off.

After years of living with sometimes excruciating pain, I had whittled it down via loads of therapies to almost no pain and a whole lot more mobility. By then I had developed arthritis in my neck, both degenerative and stenosis, plus I had a couple of bulges showing up along the way, and about a year or so ago a hands on massage therapist even found a little cystic scar in the very worst spot that finally broke down enough for me to turn my head freely to the left without pain for the first time in years. Well, a lot of that pain is back now, and I can only think maybe being held in one position with airway was really hard on my neck. I'm having a super fibro flare with shooting pains going all over my scalp and down my shoulder, and my neck feels like it took a hard punch. I know this is nothing new and that time and patience and more therapies will help me work it out, but it's been very hard not being cranky, as you can imagine. I'm trying not to be short with people, but it's quite a challenge when all this pain is whinging around my head. One of my cranial nerves feels like it's getting electrical zaps every few seconds, and this has been going on for several days.

Thank goodness the surgery itself went spectacularly well, and I'm healing fast. The pain level in that area has gone down exponentially, and I'm looking back and can't believe how much pain I had been living with and how much it was affecting my overall health and my appearance.

Tuesday, November 28, 2017

What is tiny and green and hurting all over?

I've been blogging most of the daily/weekly stuff on #pinkyblog, but since this one is 99% medical, it's going here.

I've had gallstones come and go for decades, sometimes they would just magically dissolve and then come back.  I guess thank goodness for being autism spectrum with a fibro nerve disorder, because I was done dealing with the pain long before a rupture, even though I've been putting up with gallstone problems most of my life. I've regularly passed them, very used to that kind of pain, but this year was really different. I felt short of breath and heart racy with the least exertion that got worse over time, and the worst of the pain referred left, so I was checked for everything imaginable, including pancreatitis and aneurysm. I've seen the pathology report after surgery. I got lucky, my gallbladder wall was only .2 cm even after months of being chronic. My mucosa was still intact, but I was a ticking time bomb this year jammed so full of little rocks and scattered particles inflaming the hell outa the surrounding area.

From the abstract The degree of gallbladder wall thickness and its impact on outcomes after laparoscopic cholecystectomy.
"A greater degree of gallbladder wall thickness is associated with an increased risk of conversion, increased postoperative complications, and longer lengths of stay. Classifying patients according to degree of gallbladder wall thickness gives more accurate assessment of the risk of surgery, as well as potential outcomes."

I honestly cannot even imagine reaching the point of rupture. So many horror stories are coming at me now from all directions about complications that I'm wondering how some of you or your loved ones are still alive. One doctor once called me a canary in a coal mine, aware of my internal environment long before other people normally are, and another told me I'd probably outlive everyone I know just because I can feel every little thing inside me making me a nervous wreck.

Since I've lived with autoimmune flares and resulting treatment wreaking havoc on my immune system, I have a very healthy fear of infection going out of control. I'm not easy to treat because med intolerant, so I confine myself to what others fondly refer to as my bubble world. I still go out and run errands, but I'm super cautious about not ever letting anything touch my face until I get home and wash my hands really good. I've had allergic reactions to simply absentmindedly scratching my lip, and I pick up germs so fast just touching things that I'm usually the only one sick. I've mentioned picking up hand-foot-mouth just from resting my arms and hands on chair handles in a waiting room and not being mindful of touching my hands to my face. I had no other contact with anyone besides my husband for the two weeks prior, and he never got it.

One of my biggest fears is CMV reactivation, because I've been living with a liver condition most of my adult life and possibly even my entire life back to around 11 years old. I had a discussion with a liver specialist one year about aggressive mega supplementation for long periods that I was subjugated to as a child, and it's very possible my stomach bloat and belly pain goes back that far. My liver was already sensitive when I started drinking in my mid 20s and I'm pretty sure I went through liver toxicity after sudden alcohol withrawal about a year and a half later. I've been watched for liver tumors after a ten year stint with lupus meds, and then had a few discussions about autoimmune liver disease after initial CMV infection swelled me up for months, which could actually kill me very quickly if that ever happens. The last thing I want to do with my health is make life harder on my liver.

Most people don't even think about their livers and don't know they live with stenosis for years. I've been very aware since my late 20s because my liver almost never stops sending out referred pain signals, and apparently was able to feel the imminent explosion coming on. I can't tell you what a relief the surgery was after months of pain referring, and after the horror stories I'm hearing from friends and loved ones now about their own and others' experiences with gallbladder emergencies, I'm point blank saying stop blowing yours off before it gets to the point where your life STOPS for immediate emergency rescue after a rupture. That level of inflammation and infection isn't easy to get over and recover from once that happens. That ticking time bomb is snuggled right next to an organ you absolutely cannot live without.

Save the liver! I saw when this original skit first aired. If you cannot view this 3rd party embed, you can see Dan Akroyd's French Chef skit -here-.

I just discovered someone has autotuned Julia Child. 😂

Thursday, September 28, 2017

that cheerful Howdy! hasta stop

(copied from original post on #pinkyblog)

I have done my planning, my shopping, and yesterday initiated my original paleo / South Beach / Rosedale health plan combo diet. The only thing I purchased with Rosedale was the book (used, spent under $2), didn't buy anything else or take any supplements, and the rest I just studied online and did on my own.

Back around 2009 I had become desperate and bent my mind around putting together my own health care team. By 2011 I was cleaning off years of medications and lost 50 pounds in 4 months, but it took a lot of research on how diabetes actually works, how 'nutrition' is skewed into the wrong foods by big companies, how to survive without medications by actually paying attention to what I put into my own mouth. It's work paying attention and keeping track, but it's very easy with all the mandatory food labeling we have nowadays.

This is my public trail through healing.

pill phobia at its finest - coming out of the stupor of medication addictions, poor medication management, over prescribing

my problem with healthy food - challenging the healthy grains concept

Holidays With Diabetes- Easier than you think - An easy way to understand what the holidays do to diabetics

Diabetes and Steroid Meds - Surviving steroid treatment for other chronic illnesses and allergic reactions while maintaining control with diabetes

I've come a very long way since I wrote those articles. I've slipped off my own path a bit, regained a little weight, backslid into pain complications and medication problems, and now I'm very tired of 2017 dragging on like this. Time to get my control back.

Because I keep after continual physical therapies throughout the year, I am still not only maintaining function around my home, but keeping up with far more activity than I ever dreamed I could do. I still can't get on my knees at all without destroying them and have almost continual pain somewhere in my body during everything I do, including reclining and sitting, but it's manageable. However, I've lost my grip on that manageable part a few times this year, and I want it back. Part of losing that grip is because I'm slipping on my nutrition planning, and it doesn't take much for the diabetic headaches and slower healing and stomach problems and nerve pain to pop back in my door with a cheerful Howdy!

It's too easy to grab quick and starchy bites on the run because I have high energy young people in my house now. I must menu plan for MYSELF and stick to it. I work around food allergies, so I heavily depend on dairy for proteins, but some dairy has lactose and lately my glucose spiking is worse on lactose because of my new blood pressure pill. So, I bought an extra dozen eggs this week and boiled them up. One boiled egg a day will replace my second cup of coffee with creamer (canned milk).

I also bought bacon. Bacon gets a really bad rap when it's actually much better for you than cookies and cake and pie and spaghetti, especially when you're diabetic. It's easy to cook up a package of bacon and then keep it on hand in the fridge. When others grab a cupcake, I can grab a piece or two of bacon, and later I can use the bacon drippings to cook up a big load of pan roasted brussels sprouts, which are even more awesome with aged balsamic and grated parm.

Guys, I lost 50 pounds in 4 months one year without even trying just doing THAT and stopping when I reached 1500 calories. I could nibble all day and still dropped 5 bowling balls off. It never really hits home how much we carry around until you pick up a bowling ball and go wow, that was IN ME.

Anyway, I reached a point in 2011 where I felt like a skinny fat person, which was really fun for new clothes (got down to an 18), and I would really like to go past that now. I've been in size 20 jeans for awhile and if I'm going to be having difficulty with pain and possible falling (the klutz is becoming strong again), I'd like to be easier for others to help getting back up, knowhutImean? So I bought butter and bacon and eggs and cheese and brussels sprouts and broccoli and lettuce (I love lettuce wraps around chicken tenders!) and stuff like that, and let's see how the rest of the year goes.

I've been hovering just above 200 pounds for months, I wanna break through that. Can I do it? I've never lost weight on gabapentin before, plus I'm back on low dose xanax and still on daily zyrtec. In 2011 I was NOT on meds bossing my weight/water retention around, because I had spent 3 years cleaning off most of my meds and got into physical therapy. We'll see what happens. I do know that I gained weight this year on baclofen and higher doses of gabapentin, so the baclofen is gone and the gabapentin is back on very minimal pain control.

I. Want. This.

click for more fall gifs

Thursday, July 27, 2017

when your spoons feel like 2-pronged BBQ forks

Everything is *ow* and slo-mo while the world around feels spinny and objects magically go skidding miles across the floor into awkward places reserved for tiny limber toddlers. Walking is precarious, a grip on anything solid is laughable, and the only thing holding the pain-induced nausea at bay is the thought of some beautiful coffee just around the virtual bend. Everything will be fine once I get through the first 5 minutes of the daily morning spoonie hangover.

This is your brain on spinal spondylosis complicated with some stenosis, severe fibro, actual notated nerve damage in several areas, and a mysterious 'pain syndrome with psychological factors' for kicks. What the heck, lets toss in a load of every weed and grass pollen imaginable for the summer seasonal allergies thing and pretend it's not developing into a sinus infection with ear pain.

This year has been fun. Look at me, I'm hurtling down the long dip part on the roller coaster, wheeeeee. I have to keep reminding myself that I'm still more functional in many ways than I have been in the last ten years and I'm still at the advantage and have the upper hand on progress that I've made, but reality mocks with OH nonono *tsk* don't you dare forget what got you here in the first place, and then it looks at me like I got caught red-handed in the cookie jar.

My entire nervous system hurts and has been hurting like this for months. It's really rare for me to reach the nausea stage with pain because I am so used to living like this that it's almost just background lawn furniture, but last couple of weeks I'm this close to hurling just opening my eyeballs in the mornings. If I could describe this succinctly, I'd say this is as close to a full body migraine as it gets.

I am writing this down for posterity. I'm not in a whiny mood at all. I'm not feeling pissy or sad or worried. This is a good morning to write it because I'm actually impatient to get back onto the game server and go 'do something', which means I'm having to use actual brain to focus and not just dump.

Here comes super honesty. I'm glad this is happening. Before this crescendoed, I was in a depression rut for months last year. Even feeling much better than this, I was barely able to get past my daily basic chores because I kept face planting into lost time and ennui. This pain grind focuses me, forces me to cope and deal, challenges me to keep up. I like this me. I like that I'm actually keeping up and not face planting.

And since I'm getting to use my brain without the depression in the way (thank you, engaged pain receptors), I'm doing a better job lately with daily planning, list ticcing, lining up my thoughts about things to come kind of stuff. I feel like I'm balancing my days better, helping my family balance better. The last few months haven't been easy around here, and I feel like we're developing into a smooth machine. I like it.

Going forward. Five years ago around this time I was a nervous wreck coming back out public. Four years ago around this time I was a stress mess juggling 2 new grandbabies with a surgery and a huge server move corroding my work goals to powder. Three years ago around this time I was going through more histamine blowouts and on emergency steroid rescues again. Two years ago around this time I was plowing through years of emotional wall backup and processing with my psychologist. Last year around this time I was deep in a game server feeling lost. THIS YEAR- I'm on a self-appointed countdown now. I'm emotionally exhausted and numb and don't care any more about trepidations and what ifs and suddenly #allthethings falling into place and if I really do this, then the whole plan is just rolling itself out now because either I'm that great at pre-planning around unforeseen fails or I really don't give a crap any more and it's just going to happen. I'd say come hell or high water, but Missouri has flooded several times this year and my pain level has become too ridiculous to even describe, plus more people in my house and someone died next door OH I forgot, found out yesterday a kid up the street OD'd on heroin. 18, guys. I've far outlived an 18 year old, and I wouldn't trade all my pain and hardships for one single hit like that. I feel really bad for his family.

Anyway, yeah, that's my day today. My one spoon is a 2-pronged BBQ fork. Just dive outa my way and I won't have to jab anybody over a flaming grill.

Monday, June 5, 2017

Pinky sent me to my room until I can behave better

One of the fun things I deal with is diabetes affecting fibro, like neuropathies on top of a nerve disorder, which ramps fibro up from the vague chronic to the immediately acute in very specific locations, and the best way I describe how it feels is like mini gout spread out in joints all over my body. I say mini because I'm not wailing and flailing, but definitely limping, easing, and grunting my way delicately around the house as an old sciatica flare suddenly ages me 30 years and every toe and finger joint feels broken and my elbows whine about every move I make with my arms.

That's the kind of stuff that gets me really smart. I dig around in the webs and learn stuff about purines and uric acid and medication side effects and how common a lot of this stuff really is.

Oh, baclofen, how ye stabbed myne backe. Heavenly addictive, cruelly mocking, and secretly cranking up the ol' glucose knob, which over time floods my body with trash that my kidneys can't move out fast enough. What a hilarious thing, right? A pain med that is heavenly actually jacking up my pain more horribly than it was in the first place.

This is nothing new. I've been here before, many times. Years of meds, years of weird pain reactions, years of peeling back off meds and recovering.

So how long does recovery take? Because I gots things to do. *looks at watch*

Priority is giving my body time to get the trash out without heaping more on. May was a jolly month and full of good food, and baclofen makes it soooo easy to join the fun. SO. Junk food stopped (ketone buildup) *check*. Stopped most of the animal protein (purine backlog) *check*. Exercise is mild and low key (uric acid buildup) *check*. All over hydration (taking out the trash) *check*. Joint pain less acute today than yesterday *check*. But this is obviously going to take a few more days. I used to joke about hitting my wall, well, I'm STUCK IN THE WALL. My body is all wtf how did we get in this wall?

I actually disagree with this pain chart. I'm not a smiley sort of person. I always look a bit 4-5 on the upper row. If I'm hitting a 9, I probably look kinda stabby because people sort of stand back a little.

My blood sugar is coming down a little. Random check on empty stomach today was 102. It needs to be hitting 86-92 range for optimal. That's when I feel really good and have energy. Doctors don't fuss over it until it goes over 126, by then it's affecting organs and you need meds or a very big lifestyle change to slow that down. If I'm hurting all over at a steady random of 107, that's a great big red flag. Took awhile to figure that out. Life grinds to a stop if I'm not controlling. Those of you laughing because it's not something like 140 and you're used to 160+, I'll share that I've clocked anxiety attacks at 140 glucose without fail and nasty headaches by 200. If you are having headaches and anxiety attacks AND you are diabetic and eating junk, I swear that can all stop.

But yeah, I hit that big anxiety out of a dead sleep couple nights ago, and that's when it really got through that the baclofen is no joke and maybe I need to decide just how much I'm willing to get wrecked back up in trade for freedom from a perceived pain level.

Sunday, June 4, 2017

living with a med addiction

This could have been miles longer, but I'm learning to cut it way down.

One month on baclofen, and having obvious issues with it. Latest issue is altered mood states, mostly super cranky, underlying issue I found out a few days ago is it raises blood glucose, which might explain the 15 point rise in my fasting glucose and the subsequent pain loop induced as neuropathies worsen with diabetes flares.

First dose was heavenly, but I could sure feel it wearing off, which I didn't realize was a red flag. Second dose (next day) less heavenly, sucked wearing off. Continued one dose per day for a week, which helped with the immediate problem in cervicocranial stiffness and pressure, and decided to half the dose. Wow, only one week on 10 mg a day and cutting to 5 mg was nuts. The next day I took 3/4 of the pill and did that for a couple weeks. Could tell this would be a problem and looked up the med specs.

So I'm a protracted withdrawal benzo patient who cleaned off 2 decades of regular low dose benzodiazaine (and all other meds) for 2 whole years, back on super low dose xanax in lieu of head meds backfiring, also now on low dose gabapentin for a year (higher doses were a nightmare), and now on low dose baclofen "as needed" (right, a script for 3x per day doesn't actually spell 'as needed'. So glad I never did more than once a day in retrospect). Basically, I'm on a cocktail of receptor meds that seem to be locking me back into addiction nightmare, and they're not playing around.

Add to this a swedish massage for neck, back, and shoulders, actually barely touching neck this time, and I'm waking up in panic attacks out of a sound sleep 2 days later, fibro reaction to hands on (even gently) plus med edginess from dosing down, can't even begin to describe what abruptly waking up like that is like. Adding a background of years ago car ejection survivor with unknown possible brain injury (around brain stem at that) and I can't tell if this is just med taper or an actual problem. I'm obviously typing just fine at 2 a.m., so I'm leaning toward protracted withdrawal rearing its ugly head. The crazy heart racing and panic (complete with weird numb and temperature change surges) absolutely would not calm until I got out of bed, got dressed, booted up my laptop, and started typing. Welcome to med addiction 101, where the internet in the wee hours is your best friend.

It's hard to prioritize like this, but seems to me the most recent med is the easiest to get back off, right? Looked up several sites with taper advice, and baclofen is looking worse than xanax, and xanax was hell enough the first go round. Check out this forum asking the question Can Baclofen reset benzodiazepine withdrawal symptoms? That's about the most eye opening thing you'll ever read about patients knowing their stuff. Using these kinds of forums was how I was able to clean off 2 decades of opiates and benzos. And if you don't understand all that big junk, lemme sift it down to *easy* for you- Always go real slow getting off your meds. And if at all possible, best to let your doctor know you're doing it.

I know there will come a point where I will need to stick with the big guns the rest of my life, but I prefer to hold out on that option until I'm actually crippling up and super miserable again. I can't believe I keep getting these big prescriptions for stuff that barely even shows up yet on scans, and actually more dangerous than simply just monitoring me on one receptor med like xanax. Being on 3 different ones while dealing with side effects on top of real life problems seems a bit exaggerating.

Anyway, boiled down, I clearly can't stay on a daily med pulling the ol' alt mood thing on me while it pumps my blood sugar out of my control, so here we go, time to deal with real. I will go back to bed now, fully clothed, knowing that this all calmed down and, aside from tight neck muscles, I'm fine. It's just my nervous system going crazy while my brain receptors readjust.

June promises to be a long month, which seems fitting since 2017 has been a great big grinder all along anyway. And when do I not glory in suffering? I really am at my best when life sucks harder than usual.

I started writing about medication addictions in 2008 on my Bluejacky blog, much of which is now private, so I've got 9 years of medication addiction personal blogging under my belt. So much is out there that I don't feel I need to add more, so I rarely bring it up nowadays. Tonight was courtesy of Pinky, who says it's important to keep integrating #allthethings. Tonight's post was brought to you by super spoonie aspienado.

Wednesday, January 18, 2017

sleep study fallout and consequences

My apnea-hypopnea index was 17 (I was told that meant I woke up an average of 17 times an hour), and my desat was 78%, which is importantly not good and scary bad. Blood oxygen saturation ideally shouldn't fall below 80%, and if it does, it's considered critical. (Simplistically, I'm on my way to congestive heart failure if I don't correct this, if something else doesn't get me first.) During sleep study, according to the document I link in the next paragraph, 75-80% is considered moderate, and less than 75% is considered severe, so I'm kinda cutting that one close. (Ever wonder how people just die in their sleep? Now you know.)

How to Interpret Your Sleep Study That's a pdf document, so give it time to load, actually very cool with pictures and graphs of how it all goes down on the testing end.

I have 4 out of 6 qualifying CPAP symptoms- daytime sleepiness, hypertension, insomnia, and mood disorder. I've lived with all this for 2 decades. I've never yet had a stroke and never dx'd with heart disease, although both are prevalent in my mom's side of the family, and once that stuff hit my mom, she went down fairly quickly. I have been doing everything right- nutrition, exercising, med monitoring, excellent bloodwork and health according to everything I'm tested for. That means nothing if I'm not getting enough oxygen.

Last night I found myself ripping my mask off at first, but that stopped and I slept great after I lowered the humidity. This morning I'm sneezing and runny nose stuff like allergies, but apparently this is common and someone in comments said lowering the humidity even more helped, so I'm going to try that. I'm already on round the clock zyrtec with benadryl on standby, but we haven't started cedar pollen here in Mirkwood yet, so I need to figure this out before successive allergy seasons blow back up on me. Unless I actually have a real allergic reaction (and you know I'll be watching this), I think the O sat level coming back up is important enough to keep trying. At any rate, saline mist helped to dissipate that discomfort this morning.

Top 10 Ways To Solve Common CPAP Problems and Discomfort

Side note- I'm finding out that sleep apnea can happen in all ages and body types, and you don't have to be old and fat to 'get' it. I had a sleep study done 10 years ago that I wish they'd followed up on more rigorously, because even though they didn't see apnea, they did see brain rhythm lending to insomnia, which I was probably born with. I'm sure nearly ripping my head off ejecting from a vehicle crash didn't help anything, but for years I've lived with so much neck pain and weird sensations, including pain with swallowing, I can only wonder if part of my need for CPAP now is from an ongoing degeneration around the nerve injuries I acquired in that wreck. It's interesting that I barely weigh 5 pounds more than I did at the time of the first sleep study ten years ago, pretty sure 5 pounds wouldn't cause apnea on its own, especially since I'm currently 40 pounds down from highest weight. If you are holding back from looking at the possibility of a sleep apnea diagnosis because of stigma, you might literally be holding your life in your hands, so check into it if you're having symptoms.