~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.

Monday, November 21, 2016

causal awareness

I struggle every day with a human phenomenon known as blame, and I know others do, too, so I'm going to go through a thought process with a list. Some of the list applies to me or other people I know in real life, others I know across social medias, and still others I've read on blogs or in articles. I'll make this simple.

YOU did not cause your cancer. You might live in a body that is genetically and environmentally more prone to cancers, but your actions are not to blame for you being born in that body. There are plenty of people who never get cancers even though they do all the things that can contribute to cancers, and there are people who get cancers even though they do everything right to avoid them. We cannot see our body coding and the actual factors that actually trigger a group of cells to start skewing into madness, so how can YOU be to blame? That being said, yes, there are things we can do to limit the possibilities of aggravating cancer eruptions, and there are more things we can do to heal and restrict them. But never for a second believe that YOU caused your cancer.

YOU did not cause your arthritic condition. Choose one, there are so many kinds of inflammatory arthritic conditions on this earth. You might live in a body that responds incorrectly to information feedback, and it hurts, but you are not to blame for that pain you live with, the pain that makes everything hard, the pain that no one else understands. There are lots of people around us who can be as active as they want with their bodies and never elicit a self defeating inflammatory response. Good for them! But we cannot recode our bodies to stop responding incorrectly, so how can that be your fault? That being said, yes, there are things we can do to hold that response down, to stay functional, and to manage pain. But never for a second believe YOU caused or deserve your fibromyalgia, your achy joints, your severe spinal pain, your nasty headaches. NO ONE deserves pain like that, and you are fantastically brave living through it.

YOU did not cause your diabetes. A family could be genetically riddled with it, and one person gets skipped and can eat bags of candy without ever having a glucose spike. So hard not to be jealous of that, especially on holidays and other get togethers where people eat whatever they want without a care in the world. Logically, if we could cause our own diabetes, the entire human population would probably have died off by now, right? Our choices are not what causes an epic fail in our digestive system to process a major portion of our food. That being said, yes, you can make it worse by ignoring it, you can make it better by paying attention to it, and you can learn to live a long healthy life with it. And then there are some people who do everything right and still have a horrible time with it. NEVER feel guilty for having diabetes. Diabetes is no one's fault.

YOU did not cause your child's genetic defect. Spina bifida, cystic fibrosis, Down's, cerebral palsy, insert long list of genetic problems at birth with a variety of reasons for happening. Scientists find out why, medical experts look for ways to avoid them, but you did not bring that on your child through any fault of your own. We are innocent to the mysteries of the universe, and we do our best with who we are and what we have, and ironically, it might not even matter if you come from poverty or wealth for these things to happen. They simply happen, and we learn a great deal about ourselves learning to love and help special people with extra needs. That being said, we can now ask- Where would we be without this compassion in the world, and I daresay the extra drive to find out how our bodies function and thrive? Others who proclaim judgment being expressed are much further away from learning compassion and will take longer to understand what is missing from their lives. Simply nixing the problem has a way of backfiring, as we can see through history. People become harder and meaner when they weed out the weak, which casts long shadows on notions of spirituality. Some even suggest the weak are here for us to learn to be better. NEVER believe your child (or you, if you are an adult living with a genetic defect), is your fault.

YOU did not cause your mental illness. Brain chemicals are much more complex frontier than digestive chemicals, and neural synapses and miles of nerve pathways are more intricate than nearly anything else that is scientifically studied. This mystery of consciousness and awareness being possible on a physical plane is still so overwhelming that we still don't know what to do with it, so it's easier to make slots for behaviors, like a fishing tackle box. This goes here, that goes there, and if you don't fit a slot, then woe be to ye. We are finding out it doesn't work that way. Everyone's consciousness swims through a sea of chemical interactions, and some wade through sludges that make getting through a day very hard. Who in the world even wants that? And then the medical experiments- we haven't come that far from institutions and lobotomies, and now controversies over raising generations of medicated children. No, you didn't cause any of it. We're all swimming in this chemical sea, and so much is easily masked with drugs and alcohol in attempts to deal with something we still don't understand is happening. That being said, yes, opening our eyes to learning new cognitive concepts is the first step, and choosing to learn how to live better with our chemical imbalances is sometimes preferable to self doubt, self loathing, and self harm, but YOU didn't bring this upon yourself.

YOU did not cause the bad weather happening to you and your people. Droughts, hurricanes, earthquakes, flooding, fires, meteor hit, lightning strikes, hail damage, tornadoes, wind sheer, avalanches, and all the resulting illnesses, crop failures, transportation problems, famines, injuries, deaths- all are just part of living on this planet. You are not to blame for where you live and your behavior didn't cause a deity to mass torment everyone around you. Sooner or later one area or another will go through a massive tragedy, and that is when we find out how kind and generous the rest of the world can be. That being said, yes, we can take steps to make surviving catastrophic events more probable. We are working on early warning systems, better travel in some places, programs to help those in need of rescue, and for those who can afford it, insurance plans to hopefully make rebuilding easier. NEVER EVER *EVER* think the world is terrible for everyone because a handful of people deserve punishment, because it doesn't make sense for any God who is rooting for humans even slightly to be meaner than we are, seriously.

I could go on in many other ways. I'm not even going to touch being born into religions, political regions, skin colors, and especially orientations (which I personally think are as varied as everything else we live with in our bodies), but you can see how none of us cause our own circumstances that we are born into. There is no reason to blame ourselves for what we must live with, and no reason to hate others for what they cannot help and didn't choose. NONE OF US GOT TO CHOOSE WHO WE ARE. Anyone who thinks they can judge another from where they sit very simply just wasn't born into a different body, different family, different place on this earth.

There is this thing that happens inside of people when other people judge. We turn it into self loathing and self harm and then feel frustrated and angry back at the world for our self blame. We don't mean to make things worse, but hating ourselves and other people based on what other people say or think doesn't help ANY of us at all. Fear and sadness drive us into dark places, and allowing ourselves to be driven into ways of thinking that we abhor is super fail. We can believe what we want to.

I believe we live on a really tough planet in fragile bodies and most of us are really really scared because bad things keep happening and we feel like there's no hope sometimes. Yes, but that's only one side of the coin we call awareness. I also believe we live on the most beautiful planet in our galaxy in awesome bodies that teach us what being real heroes is all about, and WE are the hope we are looking for.

Be excellent to each other, never give up (never surrender!), and go be awesome. I love you guys.

Monday, October 3, 2016

looking outward when looking inward backfires

I started this 13 days ago and then forgot about it.

I was recently asked on twitter "do you go through the 'why me' why do i have to deal with this rubbish stages?" and I replied "very rarely, bcuz it destroys me & I ruin everything". More recently than that I was part of a discussion about the whole "it's not fair" point of view about an entirely different situation. The first situation was about being trapped in crap bodies, the second was a relative deprivation kind of thing where someone else is setting the rules in your head for what life should look like.

I have so many stories about the unfairness of life, but I think the fastest way to get where I'm going today is to ask where in the world the idea of stuff being fair even comes from. I have seen absolutely nothing in my lifetime that suggests there is such a thing in human existence, and no idea more destructive to relationships, self esteem, and point blank survival.

I don't need to bring all my stuff up again, or that one of the ways I handle embracing my own stuff is by noticing others who are handling even more with good grace and modeling on them. There's really no comparison between my daily pain level and someone's face being 3/4 burned off, or a baby born with a genetic terminal illness or having very early cancer. There is no winning the suck contest between any of us, because life on this earth sucks anyway, and the only reason we drift away from that is because some of us have developed enough of a financial cushion to distract us from worse, unless our personal pain is so immediate that even that means nothing.

I don't know how other people live daily with the thought in their heads that life isn't fair and why me. Since I was a very small child I have never survived a 'poor me' day without something catastrophic happening, one of the earliest I can remember is actually overdosing as a toddler after my mother ignored me doing something else. I have never in my entire life thought 'life is wonderful' or 'I love life', but I'm very thankful to say that I have developed an "I'm so grateful I got to be here and see and learn this" attitude.

I'll never make a sales pitch for life on this planet being anything less than grueling, and that goes for every single person born here. Sooner or later, we all hit that spot where life sucks so bad in some way that we feel inconsolably sorry for ourselves. You can be any age in any socioeconomic status in any country and still feel so lost in despair and ennui that none of the rest matters. You can be top of the heap or part of the trash at the bottom and feel that exact thing, because this is an inevitable human emotion we all go through sometime or another before we die.

There is a voice I hear in my head on bad days. It comes from real life experience, from being friends with people who got me stuck in a very bad situation, and a baby was starving to death the entire time. It was 10 months old and still not sitting up, and its crying had become so weak that it was more like a faint wispy whisper. Every time I feel sorry for myself or bad for humanity, I hear that. I hear utter hopelessness with no comfort. I hear no one to save us, and no way to save ourselves. I hear the saddest thing our universe has ever produced or hosted, and if I dwell, I have a very bad day.

I don't talk much about some of the things I've seen, some of the places I've been or the people I've met. I've watched a few people wilt around me and fade away, even with help all around and people all but begging them to reach out. There is a place inside us that we don't come back from if we don't kick and fight, and we can't always do that. We might truly want help, but we become helpless to let help help us. I went there one day, and the only thing that saved me was a fading thought of please do this for me because I can't hold on any more.


I must have gotten a phone call or something. I was about to tell you another quick story.

When I was in high school, I begged my mom to get me to a psychiatrist. I was a high IQ student failing most of my classes, avoiding people, even committing real sabotage and getting into fights my mom (and the rest of the world) never found out about. I went so deep into my head that I felt like I was watching myself, and the longer I stayed in the back of my head, the easier it was not to surface and feel anything. After a few months of that, a tiny thought got through to me that maybe this wasn't a good idea, and I started trying to push my way back out again, back to my face, back to in the moment feeling stuff, but by then it was so hard and I was so out of practice even trying that I almost had a very tiny panic attack about it- except I couldn't even feel myself having a panic attack.

I can barely even describe that moment, when you know it's time to do something and that failing to act NOW is the very big difference between two very different futures. I could not make myself care. And it wasn't just ennui or the blehs. I was so stuck in the back of my head that I realized I might never care about anything ever again, and as I realized that, I saw a picture of people feeding an unresponsive me, limp and letting food sit in my mouth, staring at nothing, and wasting away but for the service of others over a body and soul I had abandoned.

I didn't like that picture. I grew up hating hugs and any other contact, hating being told what to do, hating that no one listened to me, hating that other people got to make the rules and make my life miserable, hating that no one cared what I cared about or thought about or how I felt. The worst possible hell I could imagine was other people actually touching me, putting food in my mouth I didn't want, putting clothes on me I hated, and not being able to stop any of that because I wasn't there. As incredible as it sounds, my one last salvation in my last moments in this world before I completely shut down was HATE. But I couldn't boil up enough hate to take action. I couldn't even feel a whisper of enough hate to push back against that picture and reject it. That was the moment I knew I wouldn't experience waking up the next morning, because I'd be so deep in my head I'd never consciously know the world around me again. The reality of that moment is so real that NOW it terrifies me how close I came to letting go of being.

What could I do? I couldn't save myself. I couldn't care enough to tell anyone. I couldn't see a way out of my own hell. I watched myself keep slipping away into a nothingness until I was laying in my bed barely hanging on to staying awake as long as possible, because I believed if I let myself fall asleep I would be lost forever. As the last of my mental fingertips finally slipped off the tiny mental ledge I was barely mentally holding onto, I thought to anyone who could hear my thoughts at all, "Please hang onto me because I can't any more", and that was the last thing I remember about that night as the last of me slipped away into nothing. I don't even remember dreaming or waking up in the night.

The next morning I popped awake like no time had passed, but all the time had changed, the world had changed. I was back in my face again, right up front feeling EVERYTHING after months and months of nothing. I sat up fully awake, feeling myself breathe, looking at every little thing in my bedroom, feeling the floor on my feet. When I walked into the kitchen I heard my mother sing out "Good morning!" and smelled bacon cooking. I hadn't smelled food in months. And I said good morning back to her. I don't think I'd ever done that in my life. I was actually glad to be able to say good morning, and I enjoyed my breakfast. I remember so many details from that day- the weather, the bus ride, all the smells and noise, not being angry or meh in school, just feeling everything. Just feeling me feeling everything.

I've never shared that story anywhere before online. I brought it up with my psychologist a couple of years or so ago, and it's part of my delayed response disorder, or postponement of affect, which is part of my neurological processing to begin with because autism spectrum, but likely also a result of emotional and psychological trauma. Basically, I am really super good at dissociating.

I'm not the sort of person who automatically throws problems at God and then thanks God for whatever while I'm suffering other stuff because I'm 'supposed' to. That's dumb. Thanks to my extremely religious parents, I grew up believing I'm not worthy, I'm here to suffer in order to learn, and that suffering is good because it is later rewarded, so shut up and suffer in silence, or at least gracefully. Worse, anything psychological was seen as government invented hokey used to brainwash and control people, so you can imagine I NEVER got the help I needed as an autism spectrum child being raised by really weird parents with such tight blinders on that the holes they peeked through were like pinpricks, and they defined everything in their worlds through what they could gather from the light coming through the pinpricks.

Meanwhile, I was the kid questioning the blinders and constantly tearing them off my face and seeing horrors and atrocities that I swear are as ugly as the alt world views we were supposed to be against, and some of them were pretty immediate, and some of that was inflicted on my poor body. I've been emotionally traumatized nearly from birth and grew up so broken that a psychologist suggested that a disorder called narcissism might have been what actually saved me from the self destruction of anorexia, self medicating, self harming, and suicide. Thank God for my weird brain, huh? THANK GOD FOR MY WEIRD BRAIN. God gave me a brain that survived all that.

I believe that part of the praying process is about focusing what we need into future problem solving, and that the unconscious parts of ourselves respond to that. I'm not into faith healing, because I think that's a real chain yanker, but it actually does work for some people and I have my own stories about it myself. I don't think whether it works or not is a judgement from God about our worthiness or whatever. I do think that our brains are very powerful tools and that when we focus (keeping in mind that religions are pretty much about focusing our thoughts), we create a direction and a goal. When we consciously acknowledge and make a statement to ourselves about what we want, our brains are tools that help us solve the problems we are having. It may not always be clear or quick, but at least once we are focused, we are in the right place for positive change.

There's this thing called pyschoneuroimmunology that is a holistic approach to health of the whole being. This is NOT a will of the mind heals thing. This is seeing the whole person, physically, emotionally, spiriturally, cognitively, and how all these interrelate into how we process out our stuff. We express our stresses in so many ways, and stresses include everything. Life on this planet is stress. How we see and feel and react to and work around all our stresses affects everything we do going forward from each moment. In my own case, and many times throughout my life, I've survived a lot of really awful things because I wanted to. Even when I felt my most helpless, I was able to consciously choose to want to be aware of my moments.

Mental illness is tough, chronic illnesses suck, injuries and emotional traumas inflict us from all sides. Why do I still want to be here? I'm past child bearing, so it has nothing to do with surviving to pass on my genes. I'm in and out of various levels of misery every single day, so it has nothing to do with actually enjoying experiencing anything in this body, so that rules out personal greed and selfishness seducing me. I'm very tired a lot, but I'm still driven to share everything I can before I can't any more, and I don't want to leave until I've done what I'm here for. That's kind of vague, but I think whatever inside me thinks it's here for must know something I don't, and it might be as simple as being the person who's in the right place at the right moment for someone else having a really stupid day, and that person is meant to go on to do something really cool, who knows. We are all important.

Anyway, back to the 'why me' thing. Do I ever ask why me?, and I don't because the second I even look at the unfairness, all the crap I've survived already overwhelms me again- addictions to alcohol and medications, not being able to do things other people take for granted, days/weeks/months so full of bitterness and sadness I don't even know how I didn't really kill anyone, years of unfairness living around people who take so much for granted and shrug me off and even use me like a servant on my worst days, all the judgment inflicted on me as a child, the never feeling loved or forgiven for being born on this planet- omg, how can I even go there? If I get caught in the life isn't fair trap and actually believe it enough to feel sorry for myself, will I wind up in jail? Plowing a car off a bridge?

LIFE ISN'T FAIR BECAUSE I'M WINNING. Y'all can suck it. I have problems galore in so many directions, but my favorite one is the frickin' narcissism, and whoever has a problem with that will curl up and die out of self pity long before I do. I am NOT going down that 'why me' path because IT'S A LIE.

If you are having a very bad rotten day, you are the one with the finger that dials a phone or types on a keyboard. YOU are the one who can find your focus. What do you want? Ask yourself this every single day- What do I want? Get specific. Look at all the ways it might be possible to get what you want. Write it down somewhere, tell someone about it, or wear one of those string bracelets that reminds us of something. Think about it. NO, don't think about killing someone, that kind of stuff backfires. But if you need escape or change or help from someone, define it, own it, make it into words, and then make the words into a series of steps that turn into actions. It starts with "I want" or "I need" or "Help me".

I absolutely do not want to blow anyone off. I'm pretty sure part of my own survival is having the kind of baditude where I figure if life is going to suck anyway, may as well try doing what I want to anyway, within reasonable boundaries because I know my limitations. I don't have to feel happy or validated before I go have a kick ass time hanging around a Hallmark store admiring cool stuff, even if I can't afford it. I still *like* it. I still like seeing what other people do and create and share. I like seeing the world turn.

I may not be able to empathize well with people having 'why me' days, but that doesn't mean I haven't walked that path and beaten it with a great big stick. I really do feel bad for people who have a hard time pulling out of the low parts of the roller coaster, and I know not everyone has that fight in them to go out kicking and screaming like I do, but I will totally vouch for it being sucky hard. I think I'm just more prone to spontaneous over reacting and that terrifies me a little. Me having a 'why me' day would NOT end well. I wouldn't be on twitter letting anyone know, as it were. I know it sounds weird, but my biggest trigger is people responding to me sharing, and it's become really obvious everywhere I go that I don't encourage comments even when they are 100% positive, and THAT, guys, is why I don't ask "Why me?" I wind up blowing up the internet and stuff.

Wednesday, September 14, 2016

TWD therapy, copy

This post is also on Pinky blog, but with lots of Walking Dead graphics and some Negan talk at the end, in case you're a Walking Dead fan.

So this month we're doing manual therapy (hands on) on the sympathetic nervous system (direct nerve input to interrupt the fight or flight feedback loop), and every bit as much a bitch as all the other work I've done over the last 4 years, but seems to be working. If you are at all interested in techy body mechanic stuff, this is the best article I've found so far.

Physical therapy action mechanisms and effects on pain management

And here is a book.

Integrative Manual Therapy for the Autonomic Nervous System and Related Disorder

This is stuff that's been around awhile and very hotly debated for years. Many doctors don't see the point in wasting time on it and generally send patients straight to injections and surgeries, which are also hotly debated and fail to alleviate as much as 50% of the patients who suffer more invasive procedures. I first brought it up 5 days ago and I have 2 sessions left to go.

My thoughts on this 'waste of time'-

  • I've lost 2 pounds, mostly because of the overwhelming residual pain, but it's staying off and I'll take it.
  • In spite of that, I've quite suddenly felt like stepping back into my old workout routine and am now doing my daily walking, stretches, and core strength again. This includes basic arm work that I had to stop doing over this last year.
  • At first I wasn't sleeping well because of the pain flaring up again (likely in response to the worst part of allergy season), but I'm now sleeping really well and my pain level is waaaay down again.
  • The maddening itching, numbness, and referred pain that I've been tolerating along my spine for over 2 decades has stopped completely a couple of times, and mostly hums along at a much lower level this month and I barely even notice it.
  • Headaches flared up during this round of therapy but I figured out it was from laying prone, switched back to sitting and the headaches stopped.

I think the mechanism in simple terms is like using very particular pressure points with deep tissue movement to gain the attention of nerve response and break through a stuck in a rut fight or flight default to reset and train the feedback loop back into parasympathetic acceptance. Basically, instead of taking a muscle relaxer to force my nerves to let muscles relax, this is a way of directly talking the nerves into letting them relax anyway. It's about cutting through unnecessary nerve chatter without actually cutting the nerves.

People talk about meditation and medical marijuana and acupuncture and more, but there's a lot to be said for hands on direct communication with a nervous system. To me it feels like when someone calms a spooky horse down, there are certain ways to move and act that cut through the fear and distrust. If my nervous system is always on edge because of a disorder, and I can bypass pills, needles, and surgery getting relief, YES.

For one time readers and noobs passing by, I was ejected from a violently flipping vehicle years ago and healed poorly at home without any assistance or pain meds, covered it up and passed for normal as much as possible for 2+ decades, developed a wicked severe case of persistent unrelenting fibromyalgia, and finally slid into the dark abyss of immobility and disability. After much consultation and documentation, I am that weird patient who reacts counter intuitively to meds, and now a medical team is watching me come back from hopelessness to functionality over 4 years of physical therapy, along with changing my diet, which was key because I have also turned out to be diabetic.

In short, physical therapy works, at least for me. Compliance (key word) with a really good physical therapy team, complete with specific documentation and goals, has been turning my life around, and while I'm not cured of fibro or diabetes, I'm no longer as dependent on a caretaker as I was for several years before the therapy started.

Physical therapy is very grueling, and there have been a few walls that we've had to back up and figure out how to go around or get over. It takes the kind of commitment that an athlete makes to training. Physical therapy isn't a one stop fix it shop, like car mechanics. It's an ongoing process that measures and directs regaining functionality, and I'm finding that if it is measured by pain levels going up and down, people tend to quit and say it doesn't 'work'. Well, there are ways to slow down and try different things and it can still work. Communication with the therapist is vital. I am one of the very few patients my team has that still comes in voluntarily to keep improving, despite pain flaring up so bad that I have to take breaks.

I know there are lurkers hanging on through the sucky long hard dark nights in terrible amounts of pain and sometimes fear and hopelessness, and I just want you guys to know I've totally been there for years, and it really is possible to find real help. Keep trying. I have to ask my doctor for referrals to physical therapy (I'm so thankful he's on board with that), and it helps that my neurologist is willing to try that first before desperate efforts like surgeries. Once you start the surgeries, there is no reset back to pre-surgery. Nervous system surgeries involve intentionally damaging very specific nerve bundles in order to muffle pain, and this is fine if there's nerve damage and there's no other way. Also, that's how they fixed my heart rhythm problem, fried an overactive nerve, so I'm not anti-surgery at all. I'm just saying if your doctor isn't offering it, ask for it. If your medicare or insurance allows it, they legally cannot tell you no, but you do need to negotiate with a good reason for it. I usually have specific goals- I want to be able to put dishes away in my cupboard and it's hard to reach up without spiking pain or dropping something, so I'd like help with getting stronger and someone showing me how to move properly. Once you get the hang of setting your own goals, you might be surprised how quickly the medical field falls into step with you. It's more a matter of saying the right words than expecting someone to fix you when you live with ongoing vague symptoms that no one knows quite what to do with unless specific corrective procedures are clearly indicated.

I'm not sure how much more therapy I'll be allowed to keep referring into, hopefully as long as I can keep showing it's worth it with improvements. Medicare allows several months of therapy every year, and many insurance plans have physical therapy allowances, although they can be pretty stingy about it. I once complained years ago that my insurance was willing to pay for a $10,000 surgery but not another $1000 to prevent it. There are definitely flaws in the American health system and, sadly, most of our health care runs on plans outlined by insurance companies. For me it boiled down to what I was willing to pay out of pocket, and yes, we did go bankrupt over it, but I'm not in a motor chair. I was this close to qualifying for a motor chair, guys. Not saying I won't wind up there, but I am saying not yet.

Monday, February 22, 2016

when I'm alone with my demons- pain spikes, PTSD, and anxiety attacks

I've been talking about some of this stuff on Pinky blog, but this one is super long and just needs to go back over here.

So last Friday morning was the MRI bright and early, and as per my monthly epic fail quota, I missed calendar syncing it on all the calendars around my house, so good thing I actually compulsively opened my pocket planner for a quick confirmation, prompting an abrupt charge out the door just in the nick of time.

~Blood-y-HELL~ blogger just took it upon itself to try publishing this already. wtf, dude, I'm not done yet.


Ok, so anyway, squeaked into my MRI right on the dot, thanx to @bonenado's awesome driving skillz, and then listened to 50s music for 20 minutes.

Reality check 1- The ear plugs did NOT say latex free on the package, and there's no way I can lay through that noise going way past full blown autie sensory overload, so I calculated that I could get through 20 minutes of ear plugs on the zyrtec I'd taken and then start slamming benadryl afterward if I came out with my cheeks all red and puffing up, so going in the tube first thing with anxiety on top of the claustrophobia, rightonrighton. I'd taken a whole xanax, thank goodness. I did take benadryl afterward, but had very little in the way of skin reaction. This is a big deal since I have to wash my hands after I put on my athletic shoes, and the last time I was in a shoe store I wound up in ER and the last time I had shea butter in PT my entire back turned a nasty neon pink. Latex allergies are super real, and it's everywhere. Anyhoo, I choose 50s music because the songs are shorter and I can count them. I figure 10 songs max, this time it took 8. Aspienado does a lot of counting during medical testing. The countdown is the only thing that keeps me from pushing that little button. Oh, and I no longer do contrast. I once had contrast reaction in the tube, and they didn't pull me out while I was begging to be pulled out. Yeah, what's the point of telling a claustrophobic there's a button if they ignore it during an actual reaction. My skin was on fire from head to toe like I was really burning, and by the time they got me out of there I was a weepy mess. I am so very lucky that reaction wasn't worse. Back in 2008 I was ignored, well, nowadays they are required to put a reaction disclaimer in every room where you change into your little gown. I don't do gadol any more, thanx. Anyway, you can see that only added to the overall anxiety problems, right?

Reality check 2- Laying rock still for 20 minutes in an uncomfortable position under duress triggers fantastic pain spikes for several days, no matter how much sedation you're on. Fibro blows up and then goes into full spasm lock mode, nerve trunks and nerve centers light up like it's Black Friday, and there is absolutely nothing any more I can take to make any of it stop or even slow down. I just have to grit my teeth and keep myself distracted and busy till it all calms down again. A simple 20 minute MRI can affect me for days.

I've talked about anxiety and PTSD, and y'all know I'm home alone 12 hours a day, so I thought Hey, why not share how I deal with this? Because I'm not popping pills and calling people, right? So this is Aspienado's tutorial on how I get through a major anxiety spike, like I'm having this morning.

There are nerve centers in your back under your shoulder blades that can trigger upward and wreak havoc, sometimes resulting in nasty headaches or wild lightning pain spikes shooting around your torso in various ways. I've learned over many years that the worst of this lasts about 20 minutes for me and then starts ebbing, so once it kicks up to the top notch, I just hafta get through 20 minutes and then coast down during the rest of it, which can take anywhere from another 20 minutes to several hours. BUT, that first 20 minutes is pure hell, thanks to a big chemical dump on my nervous system.

I used to go to ER. During that first 20 minutes I mimic every symptom of heart attack and stroke, and I've been through the whole EKG, CT, x-ray, holter monitor so many times that I finally decided the only way I might ever be able to tell if I'm really having one is whether I'm still able to easily breathe, so that's the first thing I do, take a deep breath and ignore the pain spikes that rip around my ribcage, because fibro of the chest wall is a real thing and can be easily confused with other real things like pleurisy, which is also exquisitely painful. (Don't ignore this part in case you have a blood clot in your lung, women on birth control, especially smokers, are high risk for that.) So I'm breathing ok, I can walk without gasping, so the next thing I do is get a big drink of water and make sure I've taken my pills correctly for the day. Hydration is pretty awesome, and missing pills can get pretty stupid.

After that, if I'm still walking around breathing ok without any dizziness or something else taking me down, I go through all the motions of getting ready for work, like I used to do in the old days. It's amazing how focusing on obsessing over brushing and flossing your teeth can actually help get you through part of that nasty anxiety attack. It's not only useful and healthy, but after the anxiety comes down you have fresh breath. Hey, I'm not laughing, this is really real for me. I brush my teeth a LOT, and guess what- I don't get cavities, and I've only ever had one root canal in my whole life. (Imagine the anxiety that'll save you at the dentist!) I'm not saying brushing your teeth saves anything if you're genetically inclined for something like receding gums (that's a real thing), but it's still useful. And you can think of other things instead of thinking about dying while you brush your teeth, like how you never see actors with less than glossy teeth, and then you wonder what sort of regime they must go through every single day to always have such clean looking teeth. By the time I'm done drinking my glass of water and checking my pills and brushing my teeth, I've made it through at least 4 minutes of the worst part of the anxiety attack. If you're not taking that long, go back and floss! Doing a crap job won't make the anxiety attack any shorter.

Next is clean clothes. Just strip off, start all over with deodorant and a washcloth and fresh clothes, and then brush your hair. I can't do makeup because allergic (thank you nuts and citrus and the word 'bright' in cosmetic sales), so sometimes if it's really bad I look for weird little hairs to tweeze or something. If I find myself getting lost in that, I know I'll be fine, but sometimes it's just really bad and I can't stand there and have to keep moving.

So after that is getting shoes on, even if I'm not going anywhere. I get my shoes on, make sure my bugout bag and epipurse are stocked, and if I'm not doing any worse by then, I start walking mini laps around my house. I have one of those houses where you can walk from room to room around in a circle back to where you were, so that's my racetrack. If the anxiety is still spiking, I hafta kinda hold myself back a bit so I won't load more heart work on, because anxiety is already stressing cardiovascular, right? But a steady walk usually helps. Sometimes just 5 or 10 minutes of relaxed walking does the trick, and while I walk I can continue to assess how I'm doing or distract myself thinking about other stuff. Sometimes I pick up the house while I walk the racetrack, start a load of laundry or a load dishes soaking, and I've actually been known to come out of anxiety attacks with a cleaner house. Srsly, all the time, guys. I live like this. It is getting better over time, but for a number of years it was pure hell nearly every single day.

During all this, I'm usually dealing with random nasty pain spiking out from the nerve center under my left shoulder blade, damage that goes back to a bad car accident and virtually unreachable in physical therapy. I have a special stretch I can do for a particular muscle that runs underneath, but beyond that, it's all a waiting game. Laying still in an MRI for 20 minutes really sucks to trigger that nerve center for several days, and this morning (3rd day out) is hopefully the last big gasp before it lets go in there. There's nothing like a pain spike to trigger an anxiety attack, and when your pain is unfocused and vague and running along nerve pathways, it's really difficult to tell whether it's something immediately life threatening. Stay off WebMD while you're spiking pain through anxiety attacks. When in doubt, just call 9-1-1. You won't be able to tell if your anxiety attack is ebbing if you keep triggering it with more fear. Just saying. Years of experience here.

My pain spikes travel along nerve pathways, and the word for it feeling like lightning is Lhermitte's. I still have no evidence of MS (they've been checking for years) and a rheumatologist once told me I perfectly described Lyme (I tested positive as a carrier and it's known to neurologically affect people for years, but my doctors still ignore it as causative of anything current), but I did get a solid Lhermitte's notation from a pain specialist in a surgical center several years ago. (A couple of people I know who've had shingles say it sounds like I've lived in continual shingles-like pain most of my adult life, so there you go if you need context.) I go through stringent medical assessment every little bit, and so far the best we can do is 'pain disorder' along with fibromyalgia, although I did finally get a trigeminal neuralgia note in my history, which I'm pretty sure started with being thrown out of a vehicle. Anyway, I'm always very glad they never find any hard evidence for why the pain spikes happen, but that doesn't make it less real, and my medical team in the Mercy system is very sweet to help me find ways to handle living like this.

Anyway, the point is that it doesn't take much to trigger pain and stress, and then it doesn't take much for those to trigger anxiety attacks and PTSD, and then it's all about getting through that horrible surge of fight of flight gripping you when a bunch of chemicals very suddenly dump into your bloodstream without any warning. One thing I've learned to do is check my blood sugar. You'd be surprised how often anxiety attacks follow on the heels of a glucose spike when you're diabetic. I'm not saying glucose spikes cause anxiety attacks, just saying a carby meal can sure make them worse if you are prone to them and have diabetes. Lots of experience here. Don't eat a bunch of sweets for breakfast, ok? Eat proteins and healthy fats so your body can work through that anxiety attack more efficiently.

During the anxiety attack your blood pressure can go nuts, too, and I've learned to NOT check it, because it'll be scary and then go even higher. My highest recorded is 230/115 or something like that. I know someone who's gone higher. If your blood pressure popping freaks you out, you can call 9-1-1 and they'll get you on oxygen and sometimes IV, spray nitro under your tongue, and by the time you get to ER it'll already be coming down if there's nothing else going on besides the anxiety attack. I've done this so many times. Local ambulance noted I'm a frequent flyer several years ago, and as insurance and medicare really don't like picking up that tab, I am doing better and better about getting through these nasty 'panic attacks' all by myself because I'd rather spend what little money I have on food and tech and stuff. Remember, I'm home alone 12 hours a day, and I'm way out of town. Most of my neighbors (I have 3 close by) are gone during the day. It's up to me to learn how to deal with my stuff. Yes, I have actually learned how to prioritize having anxiety attacks so I don't have to deal with the added fear and guilt that comes with how much money they cost, although some people do the opposite and drop dead at home because they don't think it's worth finding out nothing's wrong, so don't be dumb about it, ok? There really are people out there going to ER every day during bad PTSD months and others that eventually get found alone in their houses, so- moderation. You don't have to assume something is wrong or not wrong, all you have to do is NOTICE THE PATTERN.

It takes time. Keep notes. Look at the clock, notice how you feel, write it down, look back at the clock in a couple minutes, notice how you feel again, write it down, and do this every time you have an anxiety attack. It didn't take more than 5 of them for me to realize I actually have a pattern. Some people have different patterns. After noting my pattern- 20 minutes of hell followed by 2 to 4 hours of misery but lessening fear- I began noting events leading up to the anxiety attacks going off. I have figured out several trigger events, and that some of them aren't even true anxiety attacks! Some of it was actually food reactions, imagine that. Stop eating something, fewer anxiety attacks. I can't eat a lot of potatoes. I hold back on them anyway because I'm diabetic, but guess what- people with latex allergies are supposed to be weary of potatoes. Wild, huh? So if I eat a half a baked potato once a week, I usually eat one of those chewable children's benadryls with it (I also take a zyrtec once a day), and I don't seem to have that problem. Sometimes I need a little benadryl when I eat a big salad. During peak allergy seasons, my higher histamine levels seem to make me more food reactive, and if I'm not paying attention, it feels like I'm having an anxiety attack, when really it's a food irritation.

And then there are stress triggers. I'm extremely triggerable. I avoid so much stuff to avoid either weeping all day or going into massive anxiety attacks, including entire radio stations, most of the facebook and twitter people I follow, nearly everything related to news updates, pretty much anything that triggers me emotionally. (This was way worse on muscle relaxers and other meds that can affect mood. Getting slowly cleaned off meds helped me a LOT with the continual trigger thing. Please remember I did this under supervision from my doctor and a psychologist, and then it had to be approved by a psychiatrist, which took another year. Supervision is key. Be honest with your medical team and trust them to really help you.) Once an emotional trigger hits me, I just toss off the rest of the day, because I generally don't recover from that kind of trigger, and if I don't want to wind up having anxiety attacks, I have to just ignore everything and everyone and stay busy writing or cleaning my house or whatever. Nowadays it's minecraft, thank goodness. We've all noticed it's getting worse as I get older, and I think it has everything to do with progressive nervous system something going on, because I've been dealing with nervous system problems since my 20s. Call it Lyme or fibro or whatevs, I don't care. There's no cure coming and since it's apparently affecting my brain, all my plans going forward revolve around crash control, every single day, any given moment. I'm "brain training". My number one goal is even if everything else fails, including memory, I want to be pleasant enough for my family to handle being around me, so I'm doing my best to brain train every day toward less negativity, less automatic reaction kind of stuff, more blowing off what I don't get right way, letting go of control issues, learning the ways of automated politeness, anything that will stave off regrets with my loved ones.

My mom went down smiling. She was so brain trained from childhood to keep that mask on that 5 years of nursing home staff never had a real clue just how much pain she was in, because she would only cry for us. I'm very different from her, masks come clattering off and I fight for what I need, especially if the world isn't making sense. I'm looking for the happy medium nowadays, learning how to trust other people to take care of things and look out for me. I was often left to my own emotional and even physical survival as a child, so trust is a huge thing for me to learn.

I think there are lots of people out there like me, caught in between the old timers and the younger hipster gen, and we're confused how to be ourselves and be honest without becoming the legendary crabby old person. We don't want to become what others mock. We watch ourselves losing who we were, not sure who we still are sometimes, knowing we're still important but not sure what to do with it.

Well, this is what you do with it. Share what you've learned. Other people still need us to see how to handle the scary stuff. Getting older and surviving crap isn't a joke, and there are other people following us that want to know they're going to be ok going down this road, too, and there's not a soul on this earth who won't.

You're going to be ok. Go brush your teeth when you're scared. Think about how you never see your fave celebrity with sticky teeth and how it would be cool to have lots of money to blow getting mouth swag. Or something else if that's not your thing.

Sunday, January 31, 2016


Not sure wazzup, maddening twitching all over my face today for several hours now. I think a lot of it is optic nerve overload/response, awfully bright out this morning, inside of my house almost glows because the walls are so light colored. Also might partly be related to most of my neck, face, and head feeling numbish all day yesterday.

When this first happened a couple of years ago I couldn't tell where it started, now I can tell it starts with a spot in my neck where ASTYM therapists discovered a hard capsule of scar tissue in between a couple of cervical processes and worked it down over a couple of weeks making sure I could rotate freely without a catch there anymore when I look to my left. I'd lived with it so long that I couldn't even imagine it not being there.

Anyway, it seems to be a little more sensitive again lately, and I think it's because I'm transitioning to Jawn. It's a very slim lappy and not sitting on a cooling table, so I'm sitting more above it with my arms more down. I've also had to readjust the display a few times so I can read the screen, kept catching myself jutting my face forward to see better and that's hell on necks.

So I'm not sure if what I'm feeling is nerve being less tortured now, or more tortured. I've had to stop a lot more again and work on nerve glides and just plain rest. Can tell driving and carrying groceries this week didn't help at all, although the pain level hasn't been too horrible. Numbness is a freakish thing to feel, and very hard to tell if it's better than pain or if it means a nerve is shutting down instead of coming back online running diagnostics (they really do that, I've been through loads of nerve healing), and all this twitching today is very distracting. My main solace is that I can still feel the roof of my mouth just fine. I'm used to not feeling about half my sinus, not sure that particular nerve damage will ever come back online, and is probably part of the reason I let allergies and colds and stuff get so bad before I do anything about them.

Whatever is going on, my whole face feels like it's percolating, like all the little nerve tips all over my skin are pinging around like little raindrops or something, kind of the way it feels when the numby shot from the dentist starts wearing off.

We're also noticing I've been a bit more snarky-crabby last couple of days. I remember I used to get like this at the tail end of ten-day antibiotics. Ug.

Just needed to write it down and get it out of my head so I can keep focusing on other things.