~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.

Wednesday, December 28, 2016

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.

Thursday, December 15, 2016

living with raynaud's

Imagine being stuck in a body that doesn't respond to environmental change properly. Imagine being along for the ride and there is nothing you can do but try not to grit your teeth too hard and wade through it. Imagine someone next to you making fun of you being a big baby and telling you to tough it out. Imagine finding out years later you've got a real condition that not only makes you more miserable, but impacts your quality of life in ways people who mock can't even imagine.

I've apparently had Raynaud's since childhood. Waiting for a school bus on a snowy morning had my teeth uncontrollably chattering when others' weren't. Doing chores involving cold water on a self sustaining farm included years of garden to freezer or shelf food prep. Working outside in winter to the point of not feeling hands and feet was not only expected, but very much taken for granted, even when a person couldn't feel their hands and feet again an hour after coming back into the house.

None of us knew the difference, except that I'm more of a whiner. I was the big baby, and I learned to tough it out. What I've never told anyone is that as I've gotten older, I've experienced some very scary incidences of vasoconstriction in my limbs to the point of my arms, legs, and face blanching completely white, and teeth chattering uncontrollably, not from going outside, but from simply sitting on my couch watching TV (or even sleeping) and a sudden nervous system feedback glitch tells my body I am in the arctic and I must conserve heat as much as possible, and even though the house is plenty warm, I'll chatter uncontrollably in 3 layers of bathrobe, sweater, and blanket in front of a space heater until my body can believe it really is hot and I can finally throw all that off.

I used to take hot showers, but that got dangerous, and nowadays hot water triggers a histamine response, so I look like I'm rashed out from head to toe when I take a hot shower. A hot shower would be really good for my fibromyalgia, but I don't dare go more than warm.

I live at odds with climate control. I wear sweaters all summer even when I feel warm because I'm so intolerant of air conditioning. I wear short sleeves in winter so I can layer up and down as needed at the drop of a hat because the tiny degree range from the heater going off to clicking back on is miserable.

My body cannot respond correctly to even the smallest temperature change. I avoid summer sun like the plague because I overheat so easily, even though I wear sweaters in the house and set the thermostat higher than many people do. Imagine being like this and going through hot flashes. That was fun for all.

I never wear or use fleece, because I'll suddenly need to strip at any moment or collapse from sudden heat exhaustion. I nearly always have sweaters or extra shirts hanging on chairs to grab and throw on in case I feel the least chilly. I own the temp controls in every car I sit in, and to other people I seem obsessive with fine tuning temp regulation. My family is so used to me being like this they don't even question it.

But it's a real thing. If I'm in a crowded area and overheat, I have to bolt. If I must get through a cold area for some reason, I have to deal with recovering from feeling colder much longer than I ever let on. If I'm at the back of Walmart picking up milk and eggs without a sweater on, I'll still be very cold by the time I get back to the register, and the vasoconstriction in my hands will make even swiping a debit card somewhat difficult. I've broken my eggs a number of times just getting them home because I couldn't control my hands.

This is only one of several things that affects how my hands work, but I know a lot of other people live with Raynaud's too. For some people it's fairly mild, your hand hurts holding a cold can of pop or beer. For others it's a game changer, deterring you from hanging out at stadiums for sports and concerts, or doing fun things with family and friends in weather temp extremes. It seems like a simple thing, like a no big deal kind of thing to have a weird cold hand and feet type of syndrome, but as people age, it becomes a much bigger deal. Less blood flow means less feeling and slower healing. Over time, this sometimes turned into amputations for some people.

It's hard imagining what things are like for other people, but comparing their complaints to how you feel the world isn't fair. If someone says they're cold, they really are cold and need to warm up, and even if you are hot yourself and think they're just whining, you don't know whether they might be living with a condition that will one day claim a limb.

Fast Facts About Raynaud's Phenomenon
Frequently Asked Questions - The Raynaud's Association
How Serious Is Raynaud's Phenomenon? - The New York Times

Just as Ford tells Arthur, "Always know where your towel is", I always know where my sweater and socks are. And I own an insane amount of gloves. Gloves are awesome.