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.

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.

wellness planning, fall back planning, and maintaining

I also have a copy of this on Pinky blog because it's part of my 30 day challenge.

I've been wellness planning since 2008. I had reached what felt like a point of no return and felt desperate to find a way to claw my way back to life or die. I came up with an initial survival plan with 2 fall back plans. If you need context, I was in my 40s and already dependent on assistance with self care, thanks to several illnesses crossing paths and converging on me.

Plan A- clean off all my meds (except thyroid and blood pressure pills), get proper nutrition, hydration, and sleep, work on core strength, and regular exercise to regain mobility and function and reduce pain. This took several years of strict diet changes, devotion to physical therapies, and committing to healthier sleep patterns. I was med free (NSAIDS, narcotics, benzodiazines, muscle relaxers, and mood stabilizers) for two years, which is phenomenal after 2 decades of intractable crippling pain.

Plan B- get back on meds as needed when the pain gets too rough (knowing that once I'm back on them, I probably won't be getting back off any more) to help maintain mobility, function, and pain control through good health habits. I hit Plan B this year with gabapentin to control Lhermitte's pain shocks and low dose xanax to control euphoric episodes, both of which were interrupting my maintenance plan.

Plan C- when pain meds fail to help control pain and chronic problems progress beyond maintaining and I start losing ground again on mobility and function, then I'll start pain shots and surgeries, knowing that once these things start rolling, there is no going back to presurg conditions, and that I risk not only losing more mobility and function, but infection as well. Obviously, I want to put off the most drastic measures as long as possible, since these measures will basically be about interrupting nerve signals by damaging them as a method for pain control and will require extensive recovery therapies and assistance.

I was told today for the first time in 4 years that I didn't improve after the latest round of physical therapy. Medicare doesn't pay for physical therapy if there is no improvement, and I'm certainly not rich enough to pick up that tab, so I won't be able to use physical therapy to maintain this level of function, mobility, and strength.

For example, my grip in both hands has come up to 45, which is awesome considering left hand was in the 30s last year, but I'm not improving beyond 45 now. On this particular device, normal is 65. I assume that is calculated for sex and age (most grip devices are assigned their own number range based on average weak, normal, and strong grips for males and females across a range of ages). What we've been working on this last year is nerve recovery. My muscle tone is great, thanks to fibromyalgia keeping up isometric tension in my muscles, but nerves are what tell muscles how to move, right? You can have the strongest muscles in the world, but they're useless without healthy nerve conduction.

My nerve recovery at this point seems to have stalled. I know this can be deceptive, since nerve healing is some of the slowest cellular level healing in the body and can take years, especially if you have diabetes. However, I must consistently show that I'm gaining recovery, not just maintaining a new level that I've reached, even if that is the most important part. Without maintenance therapy, I might start losing ground again, and even though the therapists know this, their hands are tied by my ability to pay for services.

So, down to the real nitty gritty now. It's up to me to keep up this level of maintenance. I've got 4 years of training and tools to help me do this, and I MUST self motivate if I want to keep this amount of mobility, function, and strength that I've gained back over the last 4 years.

My therapy plan for 2017 is to assess back into physical therapy via doctor referral sometime around mid or late spring, see exactly where medicare rates me, see what medigap picks up, and then set up a payment plan. IF that is how it winds up going, I may have to stop and just take my chances. I know exactly what I'm facing because I saw my mom go down like this, losing both her arms, her balance, and eventually becoming side-deficit and needing round the clock care. My goal is to retain my ability to self care as long as possible. I was unable to self care for nearly 2 years of my life, so I already know what it's like to not be able to get my own shower, put my own clothes on, drive a car, or even walk through a store. To get this all back has been thrilling. I love that I can easily get around again, go buy my own food, tie shoes by myself, get up and down steps without a rail. Write a paragraph.

I've brought this stuff up before, but I don't like talking about it. It's important though, isn't it? It's important that I'm willing to work for what I can keep doing and be who I can while I have the time. It's very important that I'm not curling up in a ball letting the world crush me.

"If I cannot move heaven, I will raise hell." -Virgil, The Aeneid

Part of my 30 day challenge has been about assessing where I am right now cognitively, physically, and emotionally so I can project where I want to be this summer, or by this time next year. None of my improvement just happened, none of it magically came to pass. Every bit of it was thought out, planned, and executed. Some of it was fail or semi fail because I dropped the ball here and there, but I used those times to remember that I don't want to slide back into full time face plant. Lately, though, things have gotten harder, and if I'm being honest, I have to admit I dropped a pretty big ball staying on target with my goals this year, even if I did stay mostly on track with my health. I can blame depression, or I can own it. It's my choice. There is a difference, as subtle as that may feel sometimes. Examples might be caving to a chocolate binge but realizing I'm doing that and cutting down the portion, or caving to going back to bed but remembering I wanted to get a load of clothes folded out of the dryer and allowing myself to come back to bed after I get back up and get that done.

Small steps. A few little things add up to some very big things over time. What we do might seem mundane and repetitive, but it's also cumulative. You know how I clean house? I play a game. I have to move 5 things on a counter to new locations, and I can't cheat by just setting them someplace else. ONLY 5 things. I make myself stop. But I can come back later and move 5 more. If I don't feel like doing it and stop at 3 or 4, I can always say "but just one more and you can quit", and I do it. Over time, a whole lot of things get moved. In between the perpetual hamster wheels of doing dishes and laundry and cleaning bathrooms, real things do get done. And once in awhile I reach a place where suddenly doing 5 very big things is really easy because all the rest is done enough to make way.

I've had years where not much of anything got done. I know dearly what living with depression is like. Everything stops. Will power isn't even a concept, time is a dream I had once, and dots don't connect. It's like being lost and not being awake enough to want to find a way around. But even like that, I can still play a game. I can move 5 things. ONLY 5...

Over several years I have completely changed my life.

And that doesn't mean anything or make it any easier unless I do a 30 day challenge and think about where I am cognitively, physically, and emotionally right now, see what kind of progress I've made, and decide where I want to be this summer, or maybe by this time next year.