~secret code stuff~

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.