Meaning in the Mud

Family, Friends, Strangers, Enemies, Grandmas, and the future class of 2019: hi. I’m not dead. Figured I should get that out of the way.

It’s been so long. I’ve missed you. I’ve missed writing here. I have an underlying angst that eats at me when I know zero words are emitting from the blog of roughly 12 readers a day. Still, I don’t like it. Mostly because I still so often spend hours a day writing, , but reading it back over it the next day, the coherency is lacking and it’s clear my spaghetti brain is hindering a collective blog, so I don’t post it. The next day I write, I try to edit, and the process just repeats itself. All of it resulting in DEAD AIR! Boooo.

Anyway, as you might’ve guessed, I’m still crashed. Or on very shaky ground anyway, and I’m not really sure why. Weakness comes and goes, my restless legs/crawly skin is constantly flaring, but it’s this damn pain in my head that is consuming, constant, and just plain exhaustive. More than weakness or any other symptom, it’s a resilient pain like this that keeps me from writing long enough to edit and post, which makes me hate it all the more.

This head/face pain started to get to me psychologically a few months ago. I’d find myself looking forward to sleep given the escape it offered from the pain. That’s not a grrrreat way to live, but it is A way to live, so there’s that. It’s just the reality right now, but I do genuinely believe we’ll find the answer to this. Or we’ll at least find a remedy for the pain. Even if it is some South American JuJu bean sprout mixed with Norwegian honey bee oil and antler-fuzz brewed into a tea. I’d drink that crap-tasting tea 10 times a day. The point is, I know it won’t feel like this forever, so I’m just hanging on and HOPING THAT A FIX COMES ALONG PRETTY QUICKLY. Sorry I thought if I shout-typed it that God or someone might hear me better.

For now there is pain medicine, dousing my face in peppermint oil, and putting a frozen ice pack on top. Then I lay there, like a useless slug waiting to get stepped on. I’m destined for greatness!

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#Useless Slugs Unite

On Monday I had my face injected with steroids and lidocaine to see if that would do anything. I do think it helped the back of my head, but so far not a lot of luck on the face or top of the head. Although the injections did give me temporary human horns, appropriately in time for Halloween. This picture is actually after they’d gone down a bit.

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She-devils Unite!

Walking back into the waiting room I told the secretaries not to judge my she-devil horns and they burst out laughing. I guess in a place that is usually so serious and nearly tense like the sign-out counter at a doctor’s office, something about that interaction made me feel lighter. 

Other than that, life remains a constant search for balance in-between hope and despair. Obviously, it feels much better to be hopeful. But damn if despair doesn’t grab you by the feet like an anchor and drag you under. It can be so easy to fall down that hole, and much harder to make your way out.

I know I write about it a lot, but it’s because chronic illness is such a marathon. Staying optimistic, believing your life can be good, finding meaning in the mud, laughing when it’s funny even though it’d be just as easy to cry, are all your job on top of the physical battle. It’s so hard not knowing where the finish line is or what it even might look like once you get there. If you’re like me, you’re always trying to calculate how your life might go if you’re sick 2 more years, 5 more years, 20 more years. It’s infinite…

It’s an impossible hypothetical that will only leave you confused and anxiety-ridden. Marc Nepo said confusion is the result of trying to make sense of things too soon, and I am constantly trying to do that. Make things fit before they’re fully formed. It’s hard to trust that wherever you are is where you’re supposed to be, and yet in hindsight, it seems that somehow it always turns out that’s the case, even when things have resulted in pain or anguish.

Nepo also said the repeated hindrance to joy in his life over and over has been hesitation. So I’m continually trying to just live the moment I’m in–1 because honestly it’s all I can handle. But 2 because when I start thinking too far into the future or assuming I could possibly change things that have happened in the past is when I actually suffer. When I interrupt my thinking and say Mary, all you have to do is make a cup of tea right now, I’m brought back to the only thing that matters and where I have any power, which is now.

It’s been an interesting experiment, this whole chronically sick life thing that I think I may have signed up for ambitiously before I was born because I’m stupid and don’t think things through. Still, it’s interesting, because it’s a perpetual challenge, especially creatively and in thinking. Like this idea–that you can be in a lot of pain, but also laugh hysterically in your living room, alone, at something you’ve seen twice before. This week I was watching jeopardy casually with my parents and I filled up with an overwhelming sense of gratitude, and despite my raging head and restless, squirming legs, such a strong positive feeling made it’s way to the surface anyway.

The same happened when Matt brought me lunch out of nowhere on Tuesday, because he happened to be eating at a place nearby. I had a migraine, but when I woke up I had a meal to eat and didn’t have to think about it or muster the strength to make one. Just deciding on food can be totally exhausting. My gratitude was overflowing. And when Monty was afraid during the rainstorm and I laid with him on the floor, because I could, petting his velvety ears as the poor guy shook with fear at the rumbles of thunder, the love I felt for him welled up inside me, to where I could feel an actual warmth in my chest. I think how lucky I am to have such incredible people (and dogs) in my life and it makes the physical pain feel less powerful.

There are many, small moments like that, where gratitude and humility and laughing out loud at something stupid all pop up and show their beauty despite whatever physical pain I’m feeling. The dichotomy of those two things and experiencing them at once is an intriguing piece of the puzzle that’s teaching me how to be a human being. I think I’m getting pretty good! But I’ll never be as good as Monty, the happiest, most grateful, and present person I know.

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Actually Destined for Greatness

Case in point, he was not at all upset when his ball became stuck under a huge flat rock that was filled with muddy rain water underneath. He spent 30 minutes digging and splashing and maneuvering for that ball, and a half hour later he came trotting to the porch, a newly chocolate lab, victorious with said ball that was almost a goner. Seeing how happy, proud, and brown he was made me laugh so hard, I couldn’t help but feel happy to be alive, despite feeling like death. Witnessing the fulfilled, unflinching life that Monty lives, it’s fair to say that dog does not hesitate or miss lifes’ moments. His joy is infectious, and I will always be grateful he’s been by my side for as long as he has.

My head is starting to fill with pressure and expand like a balloon, or so it feels, so it’s time to slug it up for a while. Then maybe I’ll enjoy Wheel of Fortune with my parents. See? I have to laugh at it. Was this the life I envisioned at age 34? Would I have chosen this? Maybe not. And yet I am learning, learning, how to find a sense of fulfillment and wander in the unchosen existence that is uniquely my own all the time. Each time I inch toward trusting this experience, the more momentous life becomes, the brighter the mundane moments explode into something special, and the more my soul awakens at how incredible it is to be here at all.

Health, Happiness, Muddy Waters

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Petition On A Mission

I realize not everyone receives the updates sent out on the status of the petition from change.org, so this is a basic copy and paste of that update with a few additions so we’re all in the know. It shares  the latest action we took and where things stand as of today.

I’ve been effectively in and out of a crash, and trying to manage pain that seems to have surpassed manageability. This has made it difficult to be the sort of advocate that executes all my ideas, completes so many goals, and more simply, publishes all the writing I do but bury in miscellaneous places.  I will be better at posting here like I used to do. Apologies for going AWOL a while. I suppose that’s another matter altogether. ANYway…

***

The box was too big for Matt’s car, so we assumed my moms car would suffice: a larger mid-size sedan. Still the corners jammed against the dashboard and window panels. The trunk? No, the trunk would not contain it either. So finally we had to put it in the bed of my step-dads old Toyota truck. I say ‘we’ but who am I kidding? Matt did all the literal heavy lifting. I actually took a photo by accident that perfectly depicts this point.

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On the way to Kinko’s, storm clouds of a distinctly Southern nature darkened and began thickening across half of the sky. A small part of me worried it’d start to rain and the box would get wet. But a bigger part of me felt more alive and hopeful than I’d felt in a while. Finally this thing was happening. But let me backtrack.

On Friday morning, (Sept 14th), I sat at my type writer fuzzy-headed after a crappy night of painsomnia and two hours sleep. But I was determined to finish this letter and write the words I felt Francis Collins would ultimately read. Something about that day, despite my feeling like a rotting banana, told me this long-ago set goal needed to happen without further delay. Time for that damn ginormous box that’s turned into a veritable piece of my living room furniture to finally leave. Time to begin the vital journey to its’ intended recipient in Bethesda, Maryland. (The NIH) (Francis Collins) (You get it)

This all took much longer than anticipated– to finish this part of the project. We printed the rest of the accumulated signatures since hitting 50,000. (!)  Printed the hundreds of pages of public comments left on the feedback page. Painstakingly blacked out all personal information on the 350+ prescription bottles I’d be using in lieu of packing peanuts. We’d completed everything but the personal letter to Collins I wanted to go on top of everything, Should he see or look through none of the rest of it, my hope was he would at least read a letter. A last attempt, if you will.

It was so hard to know which route to take in writing to him–what angle would really reach the guy. So many ideas had swirled through my head for weeks every time I laid down and stared at the ceiling, a hundred different drafts sat waiting inside me. I had to trust that the right words would emerge that day.  So I sat at my desk and banged at the keys of my typewriter. Intuition told me it might speak to him in a more immediate way for some reason. By the end it looked like a telegram to the president in the 40’s on the status of the war. (Not so far off, hardy har.)

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My healthy ally, close friend, and now fellow ME/CFS advocate Matt, told me a week earlier he’d also written a letter. We could include it if I wanted to. When I read it and saw how incredible it was–saw the effectiveness and resonance of words from someone watching this disease from the outside, I knew it needed to be included too.

Anyway, it was time to finish this last part of the job. When it was done, I began to pack the last of everything.

***

The box was filled with two tall stacks of paper on the bottom, comprising more than 2,300 pages of printed names. That’s what 51,000 signatures of support looks like. Cushioning and surrounding those bricks of names were the hundreds of empty pill bottles. (We don’t have recycling in my parish so I mean, why not?)  On top of the orange plastic ocean sat a brown box, just about the size of a Life cereal box. Inside were nearly 500 pages of your words–everyone that signed who had something to say. Voices of support for change, personal stories, loved ones stories, people sick for decades still holding out hope, and people sick at the end of their rope.

I was surprised how poignant and succinct so many of these messages were. These were the voices our government needed to see and hear (an ongoing need), so that box of papers went on top. Then of course, our letters.

The point is, we did it. We all did it. We came together and hit more than 50,000 signatures. People spoke up. The pill bottles piled up. Letters written, stories shared. Everything made it’s way into that box. And on Friday the whole kit and caboodle was taped up, sitting in the bed of a truck to Kinko’s, about to begin it’s travels to NIH. I kept looking out of the back window at it, as if it were a dog we were bringing to a farm for a better suited family to adopt.

At Kinko’s, a mostly disinterested, monotoned man asked us the typical questions and entered my uncertain answers into the computer. I was told to double check the info before hitting “accept.” National Institute of Health, Office of the Director. It felt dreamlike. I forget this man actually exists. Accept. And just like that, all that work, all our voices–in a box and carried with a grunt over to “outgoing.” Not without a picture first, of course.

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This mission so far has been possible because of the digital world we live in. Undoubtedly, none of it could be achieved without the accessibility and capability to assemble provided by the Internet and social media. For that, I am so grateful to live in the age we do.

But by putting this work onto actual paper made this crisis and our words come to life. I am one of the “millions missing”, and yet sometimes I have to remind myself my life isn’t normal. We can just do so much better, and the simple act of printing out each of your names made this reality, this need for change take on a visceral urgency in a way that names and numbers on a glowing screen can’t always do.

This was one of my major intentions in sending a box with everything printed. I wanted something people at the NIH could feel the literal weight of, could touch and hold. Something concrete they could carry with their hands. They’d be able to see what thousands of names demanding change looked like, and read our actual stories on paper. Holding our voices and stories and pleas for help in his hands, maybe Collins and those at the NIH might realize our fate is in their hands, too. They have the power to fix it. This is so much more than just a box of names.

My other point in all of this was to disrupt in a way that was not easily ignored. I wanted to get our truth and demands and personal messages delivered in an unconventional way–one that for instance, couldn’t be sent to spam. So thank you for providing me with material to disrupt with. A 24 x 24 box weighing in at just under 50 lbs should at least spark some curiosity on their end. So long as someone opens that box, I think something important is going to transpire.

I want you all to know, I realize this mission is far from over. The petition will stay open and running for as long possible. Sending this obnoxiously sized box with the things it contained was just one attempt at reaching the NIH. It’s certainly not the last, and I realize it may not work. But to really try always involves taking a risk. If this doesn’t work as intended, I can’t see it as a failure. It will only make me try harder.

So. 48.8 pounds. $100. And a lot of hope and prayers this box reaches the target. Thank you to my healthy ally Matt, for doing so much heavy lifting in all this. And thank YOU, if you’re still reading. For signing, sharing, speaking up, and helping demand change. It’s because of you we have something concrete to disrupt with. My gratitude is immense.

Out of everything, we cannot underestimate the power of our voices in this fight, and I intend for this petition to stay open as one channel where we can come together and say what needs saying. Thank you all who have spoken up and continue to. Thank you for making all of this possible.

Health, Happiness, O’ Little Town Of Bethesda

Need Some Funny In Your Life?

I have not seen this film, and I don’t think I actually need to. This trailer is so extraordinary, I think it might ruin how much laughter it brings me if I were to cross the line and actually watch it. If you need a good laugh, please watch this trailer, from a real movie made in the 80’s. (Not ironic) GYMKATA promises to bring a lot of things to the table. I don’t know what all of them are, but fighting from a pommel horse in the middle of a village and laugher are foremost.

Just knowing this film exists brings me comfort and is somehow a reminder that everything will be OK, even in times when it feels far from it. I don’t know how, this is just the power of humor people! And I believe in it, wholly. So, here it is, the film trailer that will save us all. Or at least make us laugh, which counts for something.

Health, Happiness, the 80’s

*Thanks to Matt, for showing me this glorious trailer one boring afternoon. It has brought me so much joy.

Cutting Down Trees Won’t Stop the Wind

77969e290ad545088eeb06c11ef0ce88When I was little, I thought wind was created by trees. I watched the branches bend and break sometimes, as I felt the currents move over and past me, blowing my hair around like I was a passenger in a convertible. A very strong force, what those trees could do. It wasn’t so long before I learned that wind existed in the desert. Whoopse. Naturally I then learned about currents and the true science of wind. Trees were indicators that it was windy, but were themselves were not creators of the wind. Duh.

So, how does this tie into the thinking around a disease I have? And secondly, why am I always writing about this damn disease?! So boring, Mary. But hey, this is my notebook after all. But mostly because there remains a lot of thinking to be done around this subject. The public’s view in this case matters, particularly the medical establishments. *Inconsequential anecdote, it’s very windy out here! It’s also really hot and I’d rather write indoors, but Monty made me come outside. In this case, the wind helps.

So, imagine for a moment that wind is a disease. It’s not so hard to do—sometimes you can feel it wholly, you can watch the effects of its existence in past and present form, you can even predict it to an extent, but is of course itself, invisible. That’s the start.

A powerful and controlling school of thought pervades many minds surrounding this disease; it confuses the behavior of trees as the cause of wind. Or it says that the reaction of trees to this wind is maintaining the wind itself. In other words, doctors—mostly psychiatrists, a lot of them British—are thinking the way I did when I was four. OK six. You get the idea. 

This dominant school of thought looks at the symptoms of this wind, some of which can be quantified through tests, some of which are subjective (self-reported) in the absence of diagnostic material and a lack of conventional biomarkers, and a lot of it hiding in plain sight somewhere, yet to be found. We’re getting closer, but that’s beside the point. 

Instead of seeing tree branches swaying violently as an effect of wind moving through them, this school of thought sees the behavior of trees as having something to do with the cause or sustaining of it. A common case of conflating cause and effect. Hence, their idea is to cut off the branches. Or in other cases, to just chop the tree down. So they do it. They take a chainsaw and remove the branches, one by one, and then stand outside next to the stripped down, naked tree, or in more unfortunate cases, the mere stump that remains. Outside, what happens? A blustery wind snakes up through the air, kicking up the leaves around their feet then letting them settle, blows their hair around the way a roller coaster does. Sometimes it makes a haunting, high-pitched howl. Still unseen, there’s no disagreement that the wind is making a nearly aggressive presence. In spite of all that chopping! Other times it arrives as a gentle breeze. In any case, they witness the wind despite their efforts. And for the little value it’s worth, the tree stumps says “Just an FYI, I um, I can still feel the wind.” The tree stump is generally ignored and a bird then craps on it. 

But they try other versions. They tell the tree stump to quiet his thoughts, imagine no wind is blowing. Or accept the wind, and live life as he always did as a tree…with branches…and leaves, despite not having those things anymore. He’s been reduced to a tumbleeed and being asked to live as a 30-year-old flourishing Live Oak. In spite of feeling like a tumbleweed, he attempts to live outside in the wind. He’s told to go slow, be cautious. But it doesn’t go well.

The wind blows on, the psychiatrists scratch their heads. They go back to the drawing board. Cutting off the branches, chopping down the tree, and still these powerful gusts of wind! It’s hard for them to wrap their heads around, and they’re not the only ones. This is a complex wind with a lot of strange behavior and variables. Particularly, standing in the middle of the desert where a wild wind blows, so forceful it’s difficult just to walk, none of it seems to add up.

Frustrating as a disproven hypothesis can be, it doesn’t have to be that way. It’s still an answer. A real scientist knows you go back to the drawing board despite you’re hypothesis being “wrong” or “right”, or more accurately, true or not true. You don’t throw it out, but by ruling out one idea, you make more room for the true one to emerge, right? It’s all useful information. Knowing what works and what doesn’t. For instance, Well my humble colleagues, it would appear the behavior of wind is not based on the behavior of trees. Let’s look into one of a thousand other ideas we have. It would seem that’s how progressive science would go. 

But…

Alas…

No.

Back at the drawing board, they can’t give up the ghost. They’re stuck on the idea that trees either make the wind or maintain it somehow. They’re convinced that stripping the trees, changing the trees thoughts, encouraging the tree to do things he’s hardly capable of, even if just slowly at first, will eventually make the wind stop. In the meantime, forrest are demolished, the wind blows on.

Hopefully, one day, this school of thought will be carried away like a fine dust caught up in a large gust of wind and patients with MECFS won’t be subjected to it again. Like in Aladdin when he drop kicks the magic lamp containing the evil genie into some other universe. It’s not that what they’ve found can’t help the people with this disease. Every finding is useful in it’s own way. But something like psychotherapy being touted as a treatment for this disease is as effective as cutting down forests in expectation of the wind to stop. It won’t. The studies that say they have are chock-full of issues, and the patients speak for themselves, if we’ll listen. Typically ruling out one theory means pursuit of another. It also means letting go, if you’re really seeking answers and aren’t attached to outcome. 

This BPS model has dominated the whole scene: the narrative helped shape the media coverage (and vice versa) that CBT (cognitive behavioral therapy) and GET (Graduated Exercise Therapy) were helpful treatments for those with MECFS.  It informed policies and advocated for “treatments” that don’t work, for a disease causing immeasurable harm to millions of people. And yet, they can’t let it go, convinced somehow, if we trim the branches like this or hack off the top like that, eventually this will work! If we continue to pursue this idea some perfect way, eliminating the tree will eradicate this wind. It won’t. They have worked this idea to death.

Specialists of this specific wind will tell you, will show you, that’s not going to work, because the wind is due to underlying geological processes. The people, the TREES, having their lives destroyed will tell you the same thing, but their voices won’t be heard as loud or clearly. Doubt has muffled their voices for decades. As such, there has been a lot of loss.

Like Peter Paul and Mary Sang:

The aaaanswer my friend,
Is blowin’ in the wind,
So pleeeease stop
Decapitating treeeeees

Very slowly, this historically dominant narrative is finally starting to change, despite opposition, which has doubled down on their bet that CBT and GET are actual treatments and helpful for sufferers. They will disagree with what I’ve written here, but that is nothing new. The BPS model, (biopsychosocial model) has reigned long past what it’s warranted, but in an historical absence of biomedical research and answers, it’s been easy for that to happen. We know better now, we know so much more, thus it’s far time we let that model go concerning MECFS. And for the sake of sufferers everywhere, we definitely don’t tout it as a treatment, when we know that this “treatment” can and has made patients worse. For many the damage has been irreparable. 

We are getting closer and closer to real answers, thanks in particular to organizations like the Open Medicine Foundation and the handful of specialists who’ve dived deep into the heart of this disease. But this organization runs off the charity of the public. I’ve said it time and again, but real scientists and doctors working as hard as they are, shouldn’t have to protest on the weekend so they can get their work done throughout the week. This is the whole reason for institutes like the NIH, which the public already pays for. 

The paradigm is shifting and I’m grateful for that. But charity alone is not going to pay for what is needed in the way of biomedical science. When you continue to pursue a model that’s collapsing in on itself, that’s half of how you’re harming sick people—by taking away already scarce resources that could be allocated toward research that has an actual chance of providing answers, and putting them toward a method that’s already yielded results. Those results aren’t the answer here, but there is one. There many be many. Answers lead to treatments, and hopefully, eventually, one day a cure. We need resources to go there.

I believe that will happen. I can only hope in the meantime that we hear and validate patient voices, recognize more humbly what hasn’t worked, and that we use past research to lead us in a new direction of what will.

Health, Happiness, Save the Trees 

 

**Please add your voice to the petition if you haven’t, especially if you’re an MECFS patient. Your story is important. We’re very close to 49,000 signatures …Good stuff yall, good stuff. THANK YOU.

https://www.change.org/p/increase-research-funding-for-me-cfs

The Catch-Up

A suitcase lies open in my hallway still. Anyone care to guess how long it will stay there? Mine is a week and a half, but who knows. Maybe I’ll get energized this afternoon and lug it to my closet, where I’ll continue wearing clothes out of it as though it were a portable dresser. That’s basically what it’s become. And hey, that’s OK!

Returning home from travel has it’s perks—like climbing into your own bed, returning to a dog a like Monty (who, if I’m being honest, exhibited roughly 5 seconds of excitement and then acted as if I’d never left at all). Walking into your own place of familiarity and taking a deep breath. Ah, so this is what my place smells like. Not bad! Even if you’re sad to have said goodbye to the people visited, a grand relief always seems to accompany coming home. Unexciting, mediocre, quiet, deer-less home. What’s tough about it is the game of catch-up you’re about to play.

As soon as I enter the front door, all the projects that have been mentally stacking up, making their way onto various to-do lists over the years seem to glow brightly, asking to be next. I feel a wave of inspiration- paint the sunroom! Organize my closet! FINISH PART 1 OF THE PETITION PROJECT. (More on that later) Paint the armoire! Return my 10,000 plastic bags to the grocery store. And these are just simple tasks, even if some are bigger, more time-consuming than others. I bought the paint for my armoire, Parisian Grey, two years ago. It’s been perched on top of it as though it were real decoration. And none of these include the creative endeavors I’ve been dreaming of starting or working on or finishing the last few years. They’re just things, most of them. And yet they take years to do. Years! Again, ridiculous.

There is so much I feel I have to do. I have to finish. And ever since entering the world of advocacy, those tasks take an obvious precedence and a new urgency over the rest. But traveling means you not only ‘check out’ of your little world a while, it also means you don’t get to return to it just because you’re back living in it again. You have to recover first. I always feel a small sense of guilt when I travel, because I know it will be a hindrance to finishing the important things. I always fear a loss in momentum, so I go over my plans in my head like a song on loop before falling asleep. Until they melt and I can’t remember what I’m even thinking about anymore. But I’ve written about plans before—they’re about as solid as jello. Anyway, the plans are a basic timeline of the things I’ll do when I get home, but that means about as much as saying “one day.” Still, you know how making a list makes you feel organized, even if you do nothing on the list? I guess it’s like that.

Because where do things lie, actually? For starters, my suitcase lies open with clothes spilling out like the innards of a science class frog. I couldn’t even be bothered to wheel the thing to my closet or bedroom. We arrived home just after midnight- Marc wheeled the suitcase to the hallway and that’s where I laid it down, put on my pajamas, and immediately climbed into bed. From there I spent three days. Poor Monty, a boring few days for him I imagine.

I was out of juice. Is this a poor excuse for leaving a suitcase in the middle of the hallway? Sure, fine, an excuse. I don’t care what you call it, it’s simply the case that when you’re physically weak, in pain, running on empty, your priorities become very compressed. They almost become easier to sort and identify, because your options are reduced. A lot of people seem to be under the impression that more choices are a good thing. But when I stand in front of the toothpaste aisle and there are 40 different tubes to choose from, I sort of just wish there was one or two. If there’s only two to choose from, or if one costs 5 bucks and I’ve only got $3, well then there’s not a whole lot to think about. That kind of thing.

You know what else is on my list? Laundry. Nothing but a regular old chore that I, like my mom, happen to enjoy for some reason. (I also love ironing, if I can sit…) However, the washer and dryer are at my parents house. That means walking the approximate 20 steps there and back and there and back holding a basket of heavy clothes. Darks, whites, delicates. Are you bored yet? Me too. Is laundry a hard task? Of course not! If you have the energy to do it. But when you’re playing catch-up, calculating every move as if it were dollar bills you had according to a daily stipend (or see the spoon theory) then there just isn’t enough money for tasks like this. At least in the beginning. And I was considering painting an armoire! Hah. Hah.

I realize that people with a shallow knowledge of MECFS might roll their eyes at this ‘predicament’ if either of us would even call it that. (I wouldn’t actually, I’d call it the simple and unfortunate state of things) Yeah, laundry is a pain in the ass. So is unpacking. 20 steps to your parents? Get. Over. It. In fact sometimes I think these thoughts myself! But, they don’t really help, so I let them go. The point is, I can see why this thought pervades so many people’s minds, which is to say, I can see how much work still remains on our plate when it comes to this disease. The Post-Exertional-Malaise part of this—the hallmark symptom and also another name doing zero justice—is also the part that no one sees.

I realize I’ve written about this before, and it’s not my intention to be redundant, but it’s not as if this is a publicly, well-understood or moot point. It’s one of the biggest features of MECFS that people have the hardest time making sense out of. That includes people with the condition! Both are understandable. Unless you live with someone who has this, you don’t truly witness the price attached to attempting to live in the real world a while—which if you’re moderately functional, or can play that way at least a little while, you’re always going to try. The soul needs what the soul needs. But the body pays a price.

This doesn’t even mention that you could be one of the hundreds of thousands, or more likely millions of people who return from some normal life event and pay a price in the form of a crash; weak, heavy, dizzy, pain, brain-slow-as-sap—and they do live with people who see it. Does this mean they believe it? No, it does not. In possibly more cases than its’ opposite, the sick person is assumed a malingerer, lazy, aloof, or hysterical. (Ah, if only I had the energy to be hysterical. Wait I’m hilarious, I take that back) I can’t imagine the crushing doubt from people I love, stacked on top of a crash I’m earnestly trying to climb out of. And the fastest way to regain your strength is honest-to-goodness rest. And guess what laziness looks like? You see the problemo there. In this way, I’ve been extraordinarily lucky. It doesn’t mean people ‘out there’ always smell what I’m cooking, but how could I care? I’m hardly out there. The people closest to me are helpful, supportive, encouraging and compassionate. You know, the things you crave when you’re sick. Imagine being eight months pregnant and no one believing you. On top of it they’re suggesting lots of herbs and yoghurt or something. Wouldn’t that be weird? YES IT WOULD.

Anyway, I’m writing about this not because I face it in my own family, but because I’ve become so aware of the staggering amount of people who do. The emails I get and the stories left on the petition page are crushing, heartbreaking and keep me up at night sometimes. I’ve got insomnia anyway so, what gives? This isn’t about me, it’s about doubt, and the incredible amount of damage it has done to people’s lives. Vulnerable people who need help and encouragement, where they’re getting skepticism, judgment, and advice. This is why we have to get it right. And like 40 other reasons, but you feel me.

The nice part about the suitcase in my hallway is that I laundered the clothes before I came home, so they smell like Colorado! With a touch of Southwest Airline Zest. The advocacy has to come before the painting and the laundry and the bath I really would like to give Monty because he’s beginning to smell like a dog. I don’t have the energy for all of it at once, but I can do a little at a time. People have emailed to tell me the petition is a waste of time and won’t do any good. They might be right, but even if they are, it’s a little too easy to shout from the sidelines, isn’t it? Also, is that maybe a waste of time? We can at least say, if you’re not trying, your chance of changing anything at all is zero. And I sincerely don’t believe that. Maybe this project won’t work, but I don’t think it will hurt. So, I’m going to keep trying. If it doesn’t work, I’ll try something else.

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BONUS: We’ve surpassed 48,000 signatures on the petition. Boo Yah!

Unfortunately, it takes a very long time to scratch out all the personal information on over 300 prescription bottles. And since I’m sending the 2500 pages to Mr. Collins in this box with these “packing peanuts”, the process is taking longer than I thought. At least I can scratch out info on a bottle even from bed. I promise I’m working on it, and will deliver on what I said I’d do, which is to attempt a genuine disruption. Emails are a little too easy to delete. Tweets are easy to ignore, if they’re read at all. It doesn’t mean we stop those things, but I’m trying to think outside the box. Hardy har. This, I’m hoping, will take a moment of consideration before it’s thrown in a dumpster or lit on fire. Either one. That’s the hope, and at least when you’re trying, there is some hope to hang onto.

There are so many of us in the M.E. world looking for something to grab onto, particularly through those dark times of despair. I’m hoping to add at least one hand that will reach back when they are searching for a way out. We’re going to get there, so hang on.

Health, Happiness, and Catching Up

P.S. The petition has been gaining signatures and is now over 48,000. My reliable calculator says we have only 1,643 before reaching 50,000. I say we make that happen! If you haven’t yet, please sign and/or share the petition. Every name, story, comment helps. Thank you, all of you.

Home Somewhere

Having the chance to travel anywhere is always a gift no matter how large a cluster it usually is, and I try to remind myself of this no matter where I go. The process of going anywhere can so often be grueling in just the exhaustive process of preparation before you even leave the ground. But I’m lucky I’m able to do it at all, so I pinch myself when I catch those curmudgeon-y thoughts pop up about the unconscionable sound of airport bathrooms and the logistical nightmare of planning around 7 different doctors. But you prepare well and you try to go with the flow and be grateful you’re making it out anywhere into the big chancy world. A change of place can do wanders. 

I’m back in my half-hometown of where most of my moms family lives and it’s always feels good to be back. Sometimes it feels like a dream that we ever lived here, like it was so incredibly long ago when it really wasn’t. It even smells the same, and I’m not being poetic. Grand Junction has a dessert flower, pre-rain, stony smell to it, recognizable as soon as you step foot off the plane. Like all smells it brings back a lot of memories, most of them good, rose-colored childhood memories. It’s also a reminder that even though the South always comes to mind when I think go that word, home, New Orleans in particular, having a huge family in one place feels rivals that same feeling. I’m here for my cousins wedding, a girl who’s diapers I really did used to change. As much as time can feel like it’s hardly moving at all, a wedding always does the trick. Hard to believe, fun to see, good to be back. 

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Here’s 1/20th of us, Attempt #37

The scenery is so different here and the weather is exceptionally preferable to that of Louisiana in the summer. I mostly mean that in the sense that the humidity factor lingers under 30% here, and going in the shade will actually dry you off if you were to break a sweat, and the nights—they do this thing where they cool down! Considerably. I’ve probably become a pansy since living in a tropical climate, but I actually require a sweatshirt at night. Ridiculous. 

I feel happy I was able to make this trip. Of course, I am a sucker, over-protective and absurd companion to Monty, so traveling without him actually means I miss and worry about him. It’s a dog, Mary. How many times I’ve heard that phrase! And it’s understandable; I admit to being obnoxious about the dog, but hey, we’ve been through 10 years of hard boiled life together, and that decade has been a roller coaster of triumph and tragedy that has challenged me more than any other time in my life. But all the while there’s been one constant, one love that’s stood by and treated life as though all of this were supposed to happen–as though nothing really happened at all. There’s a strong bond that this kind of constant forms, and Momo and I have it. Friends, boys, family, have all drifted in and out, because that’s just how life works, but the dog has been there every morning, sick or well, and every night at my feet or by the side of the bed.

The fact that he’s adjusted to my life changing the way it has, has always held an underlying encouragement for me, I think. Some contagious perseverance, that while circumstances change in big and small ways, there is still always a path back to your self, and it doesn’t have to revolve around anything external. Before getting sick, my thinking was more along the lines of the latter. I’m still learning how to do it of course, but at least I see it’s possible, and I’ve discovered myself in places I would never have thought to look before. Monty has adapted to all the ways I’ve changed, and so I take pages out of the Life and Times of Monty all the time. Dogs are so good for people, and Monty has been a huge gift of grace for me. Just loving him makes me happy. I know I won’t have him forever, but I’ll always have what this decade of he and I has brought to me. It’s a love and an experience that has actually become a part of me. It will always be there, and I hope I’ll always use what I’ve learned. From a dog. What I’m getting at is I miss my dog OK!? He’s in good hands though so what I am babbling on about? Jeesh.

Colorado. Right. It’s nice here. When you’re sitting on a bench outside and it’s a dry 75 degrees and you’re surrounded by mountains you think Wait, why don’t I live here again? I always wonder if my family will all end up back in Colorado some day, one by one. It’s not totally out of the realm of possibility. But there’s just some part of me that lives and breathes in the South, in all its ridiculousness and crappy weather and cock roaches the size of your hand, I find it easy to call home. I guess you can have multiple homes and they all live inside you instead of the other way around. 

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My grandma tells me how often her and my grandpa moved while raising my mom and her five siblings. She loved it. She always said it was adventure, they made new friends easily and by now in the later stage of her life, she has friends and family all over the country. She never sounds sadly nostalgic or mentions the awfulness of goodbyes when talking about leaving a place behind—which is where we differ. That idea scares me to a somewhat dumb degree. I don’t remember always being this way. I studied abroad for a semester in college, and it was the happiest time of my life. I get nostalgic about it a lot, but I should be more grateful than anything that I was able to do it at all. I’ll always have a little town in France I can tell stories about. Besancon—a somewhat unexceptional place, perfectly provincial and French with little English spoken. I loved it there. I was slightly afraid to go and yet I made some of my best friends within the first two weeks. I fell in love. I wrote and became more of who I’d always been but never completely let materialize. I learned how to be happy again after The Year the Universe Shit On My Family. It’s funny how just a change of place can change everything, and for me, that year, it really did. I’ll always hold those memories as if they were tangible items in a lockbox. Maybe one day I’ll go back, maybe I won’t. But maybe because those memories are so alive inside me, so much so that I dream of the place and the people all the time, that it doesn’t matter ultimately. In my own way, I’m still there. And it’s still here in me. I expect it will always be that way. 

Right now I’m writing from a house in Vail Colorado, at roughly 10,000 ft above sea level. In Grand Junction the altitude wasn’t an issue at all, but since we arrived here a few days ago, I can feel a marked difference. The air feels too thin to adequately inflate my lungs, making me perpetually catch and take a deep breath. It’s like there’s a good sized monkey sitting on my chest at all times. All that would be no big deal, but the dreaded weakness crept up the first morning here and hasn’t left since. I’ve been pushing it so maybe it was a crash just waiting to happen. But it feels more like an altitude thing. So I’ve surrendered to going out and doing things, which hasn’t been hard because the view from the house and seeing the wildlife (in the wild!) and spending time with family and has been more than enough and worth feeling like a useless limp noodle.

Every morning and night the deer come right up to the house to eat. Yesterday I saw a mom and her babes, a young buck and a doe. The buck was the last to leave, but first he looked straight up at me on the balcony and we stared at each other for what felt like forever. At the end of that long, quiet gaze, a sports car that looked like the bat mobile and was loud as a jet engine revved its gas as it drove down the mountain road not far below us. I swear the deer simultaneously rolled its eyes with me. I had this recurring thought of What a moron! as the sound of the bat mobile echoed off the canyon down the weaving road. I don’t even know why really, I guess because I hate noise. But I also couldn’t help thinking the young buck was thinking the same thing. Who knows, maybe he’s into sports car by now. 

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Goodbye lil Deer. It’s been real.

At any rate, it’s incredible to be in the middle of the wild. It’s too bad I’m a slow moving wet blanket taking up space and hogging all the oxygen. But the family doesn’t seem to mind, and the surrounding beauty makes up for any physical discomfort. Waking up to mountains is something that I’ll always hope is at least an intermittent part of my life. I think returning to sea level tomorrow, to the crushing heat and weighted humidity, I’ll take a big wet breath of air, maybe finally catch my breath, and I will definitely know I’m home. At least, at one home. 

Maybe for now, home is wherever Monty is.

Health, Happiness, Doe! A Deer. 

‘Swearing is Caring!’ Cursing For Charity

“We swear because we care” is the motto for a podcast I hadn’t heard of until a few months ago. Not long after that, I was ecstatic to learn that the guys over at the Watch Your Mouth Podcast had accepted the OMF (Open Medicine Foundation) as their charity du jour. Or 10 jours I guess. Watch Your Mouth is a Swearity. What’s a Swearity you ask? Good question. As far as I know, Watch Your Mouth is the only Podcast that converts F bombs and other fun swear words spoken throughout the episodes into dimes (one curse word equals one dime) At the end of the semester all the dimes to dollars are donated to a charity of their choosing at the start. I think the idea for this podcast is not just smart and innovative conceptually, but as an added bonus, it’s great in real life! Which is always, you know, a plus. 

I was surprised and insanely excited that this semester, thanks to the introduction and urging of my *special friend Matt via his support of MECFS advocacy, that the guys at Watch Your Mouth agreed to make the OMF their swearity of choice. I felt gifted with a huge boost of gratitude and hope. Especially because Magical Matt agreed to match whatever amount they accumulated this semester. And then Magical Matt’s dad agreed to do the same thing. All good news. All awesomeness. Gratitude out the wah-zoo.

The podcast follows a format involving a speciality drink/recipe (Fuck yeah! Alcohol helps swearing!) nostalgic video games, past and current movies, but maybe most entertainingly— just three funny dudes doing a lot of benign shit talking and bounce house humor that all circles back around to something coherent. Listening it’s hard not to laugh out loud and feel like you’re in on the conversation with likeminded people who call out bullshit but keep it lighthearted and fun. 

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Serious Biz

Matt and I sat in on a show so they could learn a little more about the clusterf*ck (ten cents!) of MECFS, which they repeatedly pronounced as one word: “Meekifs”— because they’re funny like that and it’s fun to say. Also, Myalgic Encephalomyelitis doesn’t exactly slide off the tongue. Along the same vein, they pronounced the OMF just as it sounds, so in the episode when you hear “omff” and “meekifs”, it’s not a bird hitting the outside of the windows or random sounds in the background, they’re real, made-up words out of the abbreviations.

Chances to partake in things like this give me hope and some kind of psychological boost, even if seemingly small when compared to other efforts. But I don’t think there’s really any such thing as small when it comes to Meekifs. It’s all about bringing light to this thing that’s existed like a damn vampire in the shadows for decades. It’s what Unrest has done, Forgotten Plague, and similar projects (aside from outright protests) that lifts this situation from the echo chamber of the MECFS world to the outside world—transitions it from something that no one may have ever heard of (but usually has some preconceived notion about) to at least something they’ve confronted with some truth or personal experience behind it. All of it helps open peoples eyes who wouldn’t normally have seen or heard of this thing. The more people who don’t know, who wouldn’t ordinarily know, and then become aware, is invaluable and hugely helpful in how we will turn this thing around. And I do believe, whole heartedly, it will be turned around, and the situation we’re in is going to change immensely. 

The guys at WYM podcast, Critter, Ken, and Dan, were welcoming, irreverent, down to earth and basically made jokes, laughed about life, old movies and video games, current movies, and Barefoot Contessa. And these are all basically things I enjoy doing. It was my first time on the “radio format” and I probably didn’t do the best job, but I tried. I just wanted the word to get out there, in as many outlets outside the MECFS community (who is fully aware of the clusterf*ck, since they’re living it) as possible. And this was one way it would happen, so I am insanely happy they went out on a limb to discuss something they and very few people know about, let alone can pronounce. And to also donate their dimes, which turn to dollars quickly because Critter looooves the F word, and that all means Cha Ching! for the OMF. Which means dollars for science. Fuck yeah! I did my best to curse a lot too. So if bad words offend you, remember, every shit, asshole, f-bomb (I believe Ken may have at one point referred to “hands” as “dick-grabbers”? I think it counts) and others are all going to an organization that at the end of the day is fighting for answers for millions of people who have very, very few. All donations go to research, and that’s something any asshole (10 cents) can get behind. 

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Wait, how do you pronounce Meekifs?

My head feels cloudy and I don’t feel I’m expressing myself as easily as I sometimes can, but I want to express my deep gratitude to Matt, for bringing up the idea to the Watch Your Mouth dudes, who are hilarious and virtuous cursers. My gratitude for WYM accepting the idea, and for welcoming me on the show without ever having met me to talk a little bit about the disease and the “omff” was big. I had a lot of fun doing the show, but mostly I just felt insanely grateful to be there, to be saying the words “Mekiffs” over air waves that might reach people who would otherwise never know about this whole thing. 

Thank you for taking the OMF on as your swearity charity for the semester, and taking an interest in something you knew nothing about, and also we can fairly say, couldn’t really even pronounce. Maybe one day we’ll have a disease name that is more worthy and accurate for what it actually does and takes, and is also easy to say: like Shit Turd Disease. But for now, Meekifs is fine by me. And whatever the hell else you want to call it. It all means a lot, and I genuinely enjoyed listening to the show, even before it was my turn to go on the air. Not live, thank God. Ken is quite the editor, so we have him to thank for smooth transitions and omissions that were junk, including me simply introducing myself, which was just a jumbled idiotic cloud of shit. Head palm! Anyway, here is the episode, and OMF, this one’s for you. 

http://wympodcast.com/2018/05/episode-124-me-cfs-explained/

You can find and listen to the episode and more on the above link or find it in iTunes or on your podcasts app on your phone. It’s easy. Easy peasy. I’m tired.

Health, Happiness, Fuck Yeah! I can say it because it’s money!

The Reward and the Wake of ME/CFS Advocacy

Two weeks ago, my family came together for an advocacy event coordinated by incredible friends and family in our old hometown, Grand Junction Colorado. The function was a success and took a lot of hard work by people who cared and put in major time and heart behind the scenes. My sisters friends Avery and Jordana, Jordana’s dad Harry (awesome dad name) and my Uncle Mike who was under the impression that months earlier he’d retired (Nope!) Besides them many more came together, helped fund, offered services, and sponsored the event in order to make it happen. As for me, I sort of just had to show up.

Beyond friends and family that put in the effort to sort out logistics doing an incredible job, the article in our local paper impressed me majorly–not just with it’s advertising of the event, but by publishing a full page color spread, covering our families stories respectively and including a digestible narrative about the reality of MECFS and giving it a wider context. I felt happy and surprised to read this article right out of my humble hometown, when such a surprising amount of press from noteworthy and “big league” media can completely miss the mark.

The dense, nearly unbelievable history mixed with present political roadblocks and numerous scandals all under the M.E. umbrella make the disease particularly hard to write about and convey in one article without writing a novel. Not to mention the personal, human interest side of this, and the toll it takes on patients and families. Very few articles contain both, and many more are simply clumsy, neglecting essential facts or even accurate data. Due to our general lacking presence in the media, I know someone might think “Well any press is good press, right?” But I struggle with that adage. When you’re fighting a thirty year old false narrative, not all press is good. In fact it can easily be bad by perpetuating fallacies, inaccuracies or misconstrued data, and even celebrate studies (like the PACE Trial) or treatments which have done the MECFS community incalculable harm.

So I guess, no, not all of it’s good. Too often I’m excited to see press about MECFS only to be disappointed beginning just the title, which will call the disease “chronic fatigue” or in the first line, inaccurately label the number one symptom as tiredness. *facepalm* But I digress, I didn’t mean for this to get into the media missing the mark, or the missing media in general, because today is about advocacy. And when people with this disease, their caregivers and loved ones, researchers and doctors are out there fighting for it, none of them will get it wrong. All of them know the numbers, the history, the truth, and the unfortunate personal toll.

The event in Colorado was a success. And maybe I’m a romantic and would call it that if even 3 people showed up, because that’d be 3 more people who were aware of something that is so rarely seen, heard, talked about, or understood. But many more showed up, family and friends we hadn’t seen in decades, strangers too, all to learn about a disease on a Sunday night, when it would be so so so easy to stay home and just forget it. It’s hard to express the humility and gratitude you feel seeing people show up, tell you they’re thinking or praying for you or your family, or even a stranger offering his hope and encouragement for the future. It all meant a lot, really. So THANK YOU again and again.

After the screening of Unrest, the 3 of us (my mom sister and I) spoke and were followed by Linda Tenanbaum, the CEO of the Open Medicine Foundation and human firecracker, who infused hope back into the audience, who were probably mostly thinking Dang, this is a shitty situation. Shituation?  She closed out the night before it was on to the reception. The firecracker (Linda) is an amazing speaker and doer, and having her attend the event only amped it up. Getting filled in on the OMF’s work and most up to date findings was a truly optimistic breath of fresh air.

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The OMF is at the forefront of research and work purely off donations, as in every cent goes into the science. All participants–brilliant researchers, doctors, scientists and logistical coordinators work on their own dime. Why? Some of them have a child or loved one with this disease, others just a determination to find answers to something with so few. Due to the explicit lack of urgency in the government when it came to MECFS interest, when submitted applications for funding biomedical research were repeatedly turned down by the NIH, these guys got together and decided it was time to do the work themselves. And thanks to the generous donations of so many people, they’ve been able to achieve and find incredible things. There is still a lot to do and this kind of science will require a lot of GREEN. But hey, maybe the #MillionsMissing protestors out there today in the streets will help change studying a disease with public charity to adequate funding provided by the Agency whose job it is to fund.

When we attended another event much like this one in California in October, it took me roughly 30 days to recover. I know because I videotaped myself everyday for a month to track how each day went after we returned. It’s a long trip and these events, while incredible and worthwhile, take a toll. The socializing alone is just like physical exertion, and the event in GJ lasted roughly 6 hours. While I’ve recently undergone an upswing in my health, I watched my mom that night—speaking and catching up with many old friends. Sitting as much as possible, not having even one glass of wine or “playing with fire” by any stretch of the imagination. She played it safe and did what she could to pace herself. You’d never guess anything might be wrong by looking at a photo from that night.

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Yours truly, My Sister Amelie, Linda Tenanbaum, Mama Gelpi, and my Aunt Amy. You probably know her.

Yet at 6 AM the next morning, I woke up on the couch just in time to see her collapsing, my stepdad with his arms outstretched underneath hers, catching her as she slowly went down, muscles twitching and trying not to pass out. She’d woken with a crushing migraine and often if she doesn’t take her medicine in time, some epic vomiting is soon to follow. She’d taken the meds but sometimes the migraine wins and all you can do is endure it until it’s had its way with you. She’d run to the first bathroom feeling her mouth start to water and knowing what was to follow, but my brother had just moments earlier gone in to shower before his early fight home. (Way to go NICK)

So she was on a quick race to the bathroom on the other side of the house, but midway through started to black out, and was luckily caught by my stepdad from behind while her muscles seem to go limp and the room blurred in and out. I can’t remember what was said but I knew she was going to spew quickly and ran as fast as I could for a bowl. I made it back just in time, with a casserole dish, which isn’t the best of bowls to puke in if we’re getting technical, but hey, better than the carpet.

After a nice little vomit session on the floor, we both pulled her up to the chair where we put ice on her neck and wrapped her feet in heat packs to try to get the blood to flow downward. She sat with her eyes closed, as though she were concentrating hard on something. But when you’ve experienced that kind of pain, you know just what it looks like, and that was it. She waited and Marc sat nearby for anything she might need. After an hour she was finally able to walk back to the bed and eventually get back to sleep. So, that was her morning.

And from what? From doing what healthy people do all the time. Watching a movie, catching up with friends, eating, hanging out. This is what put her over her envelope. Watching her I just kept thinking about the invisibility of it all. That no one would guess the woman they were with last night was in the extremely painful and scary position she was in now. But this is the story MECFS and those who suffer with it live it all the time. You see us when we’re well enough to be seen. Otherwise most of the suffering goes on behind closed doors, and no one presumes otherwise.

Today is #MECFS Awareness Day, and thousands of people around the world are taking part in the #MillionsMissing protest thanks to MEAction and many more. I wish I were one of them but I just couldn’t make it happen. So I made my sign with shoes attached on behalf of the three of us in the family to represent. It was only a tweet, but it was the best I could do.

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I hope anyone reading this who participated in the #MillionsMissing event knows the immense gratitude and unity from millions of us who couldn’t physically be there. This kind of advocacy isn’t easy, particularly on those who have the disease. They will all pay for it in terms of their health in big and small ways. And yet it’s what must be done in order to make the invisible seen, give the silenced a voice, and the truth a solid platform on which to land. My gratitude runs so deep to all those who organized to make THIS happen, and you know as well as I do, it doesn’t end here. We’ll fight even if we’re left beat up until things change the way they’ve needed to for decades. Hang tough, all of you. The Gelpi’s are with you in spirit. Thank you for your bravery, for caring, and for risking your own health so that we might all have a chance at actual health in the future. Thank you, in every language ;)

Health, Happiness, In Solidarity–Happy May 12th

Restlessness, Unrest, Doin Your Best, Zombies

For nearly  a month now, I’ve been writing a blog that would normally take me a few 3-4 hours to write and a few days to edit, if I were in “regular” enough health and other things were ordinary. I catch myself in a strange predicament, so I’ve abandoned that last post, which may have been THE BEST THING YOU EVER READ because I can’t damn well get more than a paragraph written on a good day, and the editing has become arduous for numerous reasons outside the one I’m about to describe, but to the point where writing, my one constant among chaos has taken a further hit. And since I’ve learned, for me, writing a simple status of things in my own life is easier than trying to put some thesis about technology together (one day) I’ll just bring you up to speed, because I’m not sure how long it will be like this. 

If you read in my past blog, you saw I’ve been fighting some switcht that seemed to turn on a charged degree of restless body syndrome and skin crawling, which have been part of my symptoms for years. With a switch of pain medicine that didn’t seem to improve anything and cause the hugely uncomfortable side effect of skin crawling and an insatiable necessity to move my limbs ,Unfortunately, when we stopped the medicine and returned to the regular regimen, for some reason, the RLS (or restless body syndrome + skin crawling) did not, which turned up a conundrum. 

We’ve yet been unable to find out what “fliped the switch” that made these symptoms turn on with the cherry on top of skin crawling, and why stopping the med that seemingly caused it to start wouldn’t naturally cause it to turn off. If anything the symptom has stayed the same and many, many restless days and nights become worse, and well, hellish. Waking up to squirming legs and little charges running through your body with your skin crawling on top, Is Foldiers in your cup! Kidding, its awful. I think I’d prefer pain. And since the pain has continued, now I get both, yeah! But if i had to pick between the two, I’d choose pain. It’s discomfort is different from that of squirming limbs, electrical bolts and your skin feeling like the audio equivalent of nails on a chalkboard, if that makes any sense. Besides all that, for whatever reason, the medicine I’ve been taking for nearly a decade that has controlled the symptoms 90% of the time, seemed to just suddenly stop being effective. It’s as if this clinically same symptom is originating or set off by something else in the body, and that has rendered my old meds useless. 

Where I am lucky, is that we found a medication that has been effective in controlling these symptoms, which truly, at times, feel more tortuous than pain. Where I’m a little unfortunate is that the medicine which calms down the lightning/snow/hail storm going on inside me, is the same medicine I’ve been taking for sleep for the last 2.5 years. At night it has done me wonders, since for years, even with the help of a sleep aid, I rarely made it through a full night a of sleep, saw a lot of sunrises, and often had tangible nightmares and at times became trapped in night terrors. (NO fun) Luckily this RX has not only worked best for my quality of sleep out of all the meds I’ve tried in the last decade, but it also seemed to reduce my nightmares, or at least made me sleep so well, I don’t remember them, which is, you know, fine by me. The obvious problem is that when you’re taking a pill so incredibly effective at helping you sleep, but you’re now taking it at 10 AM…you’re going to run into some issues. Like, um, what’s that word? Functioning, that’s right, you’re going to have problems functioning in daylinght. But without the meds, life is even less functional with misery stirred in. I wish I could say I were stronger and I could do it without the meds, but believe me, when you feel like you’re being tickled from the inside of your skin and your legs wanna kick and squirm and flex outta control when you just want to sit or lay and some strange shock or charge is making its way from head to toe frequently, it’s just not doable. You’re fighting the whole day. 

So, I went from misery and fighting, to z o m b I f i e d and tired and unbalanced (pysically) because that’s some of the med’s effects, which I”ll add, are HUGELY more tolerable than life without them. But, taking a sleep med during daylight, as I’ve explained, is draining me. I move slower than before. My cognitive ability feels like it’s being run by a fat hamster with heart disease. I can feel the effects that I know are from the meds, but it takes just the thought of one morning in January to make the “pick your poison” choice easy.

At a bitterly coincidental time, I was told to ween off that pill by my doctor because the FDA had been coming down hard on physisicians and who they prescribe to and how many doctors are prescribing to one patient could compromise their license. Sweet. I’d have to wait to find another doctor to prescribe it before I could refill it (I’ll write more when I’m not so z o m b i f i e d)  I found myself stuck between a few pills left and a hard place. The only thing relieving me from the misery was this med, but because of new regulations, only certain doctors were allowed or were choosing to prescribe it out of caution. I was prescribed some other conventional prescriptions to control RLS (Miripex, Bacloven and others) which did nothing, and my Lyrica and then Gabapentin had for whatever reason ceased to worked. Now I was stuck. 

I tried to talk myself into the belief that slowly weening off the Central Nervous Depressant and changing to the Bacloven that I could rid myself of this new, annoying, persisting symptom if I just believed hard enough the new meds would. But by the time I had taken the last pill and it was all up to the bacloven, I went 1.5 days and did what I guess we could call, ” possibly acceptable” but not at all “controlled” on the symtome scale. The morning I woke when I knew the last of the weening med had left my body, I was in hell. Really. I thought if I couldn’t get rid of this feeling, which was the truly inescapable task of needing to crawl out of your skin and also throwing all your limps off, I could see how and why people ended it. I know, that sounds extremely dark, because it is. But when you’re in that much extreme discomfort, you finally see why people could have it in them to do something that seems so far away and impossible in your own world. I wasn’t in hell, I had help and luckily one doctor to prescribe a partial dose until my appointment with the neurologist. Saved. 

But that morning for those hours where I tried everything I could think of and could not find relief, I thought of the many who came before me and those now who experience similar symptoms to a much higher degree and do not have the safety net of their health systems or family to fight for them and find them relief of their pain or quell their discomfort. This letter from a past advocate, one I never knew until I read her letter, who experienced unspeakable greater pain and hell than I did, and lacked the help of her countries support of MECFS more or maybe as much as the US had me thinking how in fact fortunate I was. At the least, I had a family that would step in and demand or find a solution I wouldn’ve have been capable of myself.

Another thing stuck with me. When leaving one of my 14,000 doctors, one who is actually very good and informed particularly in the filed of dysnautonomia (a huge aspect of ME/CFS for most) he said something. “You need to be getting as ltitle medicine as possible from as few doctors as possible, otherwise, you and I will be flagged.” I felt such anger on that ride home. This is where so many MECFS patients are stuck. It’s suspicious of us to have too many doctors all prescribing different meds, and yet, there’s no one doctor for us to go….This disease multi-systemic, and most patients, if they can make it there, have at least 5 different doctors monitoring different parts of their malfucntionng bodies. How on earth would we break this puzzle without research and education to show these medical entities the truth about a disease it simply does not undestand, and who some are plainwright just choosing not to look at.

I always try to take as little of the meds as I can because I know they will wipe me, which would make a lot of people, then find a way to withstand it or another solution. We’ve tried magnesium, checked iron levels, yes I have lyme disease, I take multiple supplements and I’m pretty sure I can’t The Shape of Water-it and just live in a bathtub for eternity, so for the time, this is my limited option to escape the suffering of this strange, insidious symptom that we just can’t figure out. Last month I saw Dr. Klimas, (my hero!) who is running a whole scope of tests, and all our fingers are crossed that we may find answers.  Not everyday is spent zombified, but my mom recently told me she was worried because every time she came over I sounded like a zombie and not myself and I said “maybe that’s just cause you come over at zombie hour” and she said that couldn’t be ruled out. But we both knew.

So, I try to get rid of the guilt that there is so much more I could be doing but that I am held back by from the very medicine that makes life bearable, but that can also make it very a slow moving, zombie-esque and unproductive experience. We can only do what we can do. When you’re already fighting “fatigue” (a really shitty word to describe a symptom of a really shittily named “chronic fatigue syndrome”, hmmm) a med like this is like 4,000 cherries on top. I definitely believe that either my body will very slowly adjust from whatever through it out of whack in October, or that I actually will be able to ween from these meds and get back to the thing I love more often—writing, advocating, and creating. 

And by the way, check this out! If you live in Colorado, please come to this advocacy event; it’ll be a good time with a good cause. The Gelpi’s will be there, Grandma Bell (you’ll know soon enough) and lots of others. Not Monty, sorry to disappoint 90% of readers :(

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Read more here about the event. And read more HERE for the write-up on our stories in The Daily Sentinel. Thank you Anne Wright for the article and for everyone who has helped make this event possible, which has been many, but especially Jordanna, (her dad) and my Uncle Mike who thought he was retired. Haha, sucker! Love ya.

Health, Happiness, Keep On Zombie-ing On

2017 and Falling Off the Edge of the Earth

*I’m making a concerted effort to keep these blogs shorter and “more digestible.” This is not that blog. Last year was a book all on its own and  I feel the need to fill some gaps where I was unable to write during certain parts, so I’ll do it now so I can move on to the present. Apologies it’s not shorter and sweeter. Next time.

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The beginning of 2017 had begun so auspiciously. My health was in the “good enough” category. Not great, but not terrible. I don’t even know if the word ‘good’ fits with any precision here, but looking back at the beginning of the year, it was so much better than how the year was to end.

The hopefulness, the call to act, the feeling that I could help change things related to a health crisis all felt visceral and achievable. Whenever I felt down about something, disappointed, or discouraged, I constantly asked the same question: Why not me? I’d waited on others for so long, expecting there to be a happy ending soon enough. But you grow older and you see that things don’t happen unless people believe in the possibility of things changing, and if those same people don’t believe they can contribute to this change, in whatever way small or large, things remain the same. When we stop waiting on others, and decide no matter where we are in life, there is always something we can do, we will add light to a place of darkness. We can try. And I can tell you from personal experience, many failures, some successes, that trying, regardless of outcome, feels a whole hell of a lot better than waiting. 

I think it’s why we may sometimes take the longer route home, even though we know there’s an objectively quicker way to get there—but that shorter way involves stop and go traffic the whole time. Most of us would prefer to just drive, on a road that feels open, than sit in a tense car and yell OH COME ON and beep our horns (as if this does anything in congested traffic).

I hadn’t expected the outcome that came out of writing the petition. Yes once again, I”m talking about the petition. But this stuff matters— to me, and to millions, and I need to quit pretending this is a blog that will always (or ever) be extremely exciting or cover my super fun travels to Brazil! I am after-all, documenting life and a chronic disease and a hopefully changing political landscape that I am attempting to contribute to. I try to keep things light-hearted and fun when I can, and highlight the sometimes tragic hilarity that comes from this weird, unconventional life I live. That’s the creative challenge. But the aim of truth telling is tied for 1st in what’s primary, because there has been so much, well, non-truth telling. (I’m looking at you, psychiatric club of England!) I also try not to make it so much about me, but that’s a joke, because this is me, writing about me, and also M.E. (Myalgic Encephalomyelitis— you get it.)

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In early January I met with the LA State Director who works directly under Senator Bill Cassidy. I sat with him for two and a half hours, giving him the whole spiel. At the end, I showed him the petition, which had amassed roughly 35,000 signatures at the time, and it seemed to surprise him. That led to him arranging an extremely brief “meeting” with Bill Cassidy, (literally a 3 minute talk in the parking lot between meetings, where I said as much as I could, and handed him a printout of twenty pages of comments where sick people had told their stories in condensed bursts trying out for help. Some of them were heartbreakingly short and to the point. “I have lost everything. I am bed bound. I’m not living anymore.’ As he was being ushered into his car to his next meeting and his team shouting that he was late and to please hurry, he shook my hand and looked me in the eye saying “I really would like to know more about this.” But politically things were a mess at that time. Is that a redundant thing to say? No longer even necessary? I was told he would be in our state (Louisiana) for roughly 30% of the year or less because his help with the Healthcare Bill in DC was very much needed. So I met with the State Director, but it just inherently felt like such a good thing. Any politician empathizing with you, listening to you and looking you in in eye feels successful all on its own. I realized we were all looking for that. We just want to be seen and heard, and I want to continue that mission.

Attending the “Storm on DC” in May where a large group of us-advocates, advocacy group leaders, those sick with MECFS and those who loved them— met with representatives of more that 150 congressional offices, which felt like movement in the right direction. Besides that, the catharsis I found in meeting other people who were living my kind of life was invaluable. It was the human reminder that I’m always trying to tell myself, that I’m always replying to others when they reach out. We really aren’t alone, even if we’re by ourselves. There are many of us, and yet isolation dominates. This sentiment is perhaps the hardest to remember, the most difficult to convince your heart is true.

A good family friend arranged for me to meet the Majority Leader, Steve Scalise, where we all sat down, and I attempted a summarized spiel of MECFS and the train wreck it is. More importantly I introduced this disease to a man who’d never heard of it, which is typically how these things go. Then I told my story in fast forward, as something he could connect to. Maybe something he might remember. The three of us did a little trouble shooting of ideas. We didn’t have two and a half hours, bur he too wanted more time to learn about and think on this. I left him with short and digestible literature. When we left he shook my hand and I looked him in the eye, hoping he would remember me. That somehow in the future, he’d have some faint memory of a girl he talked to—explaining a crisis underneath everyones nose that needed immediate addressing. A continuation of being seen, being heard, asking people pointedly,”Can’t we do better?” 

We tried. I tried. And regardless of what obvious or immediate changes were made (not many, but a few important ones), this all felt very good. To try. You know when you’re doing your best and when you’re slacking. Nobody really has to tell you.

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Unfortunately after my bump of health in the spring, I seemed to start on a downward spiral to crap town. I fell in love, which was energizing, but the burst of it didn’t last very long. In late summer we tried ketamine infusions to try and get a hold on my chronic pain—in my legs and my head/face. It was basically insane. And sort of a Catch 22, because I think if I didn’t have ME, I would’ve been able to handle the 3 infusions per week for two weeks. But the physical demand of doing anything 3 times a week at that point was extremely difficult. Strangely, it improved the pain in my legs, but made my head worse. I’d get a horrible migraine after each treatment and woke up the next day like it was back for vengeance. I’d have a day to recover before we’d go in for another treatment and do it all again. For someone with this illness, this kind of protocol just isn’t all that possible or as it easy it might be for others. At any rate, we went through with it, because if I was going to endure the physical hardship and psychological insanity, I wanted to really go for it. I wanted to know explicitly if this would work or not, and not do some half-ass attempt. Apparently the first 6 treatments and the time in which they’re given is crucial to their effectiveness. I would try anything that might help the pain, get me off meds.

It was an intense two weeks, and I’ll go into much further detail on another post because there is a LOT about that course of treatment, physically and spiritually, and not a lot of personal experiences written about it out there.  I believe it could have worked for the nerve pain in my legs if my mysterious stupid head didn’t explode at anything new we tried. I crashed from the exertion, the migraines became a given, and it just became clear it wasn’t working. Wasn’t going to be possible or given a real chance to work. So we paid a hefty financial and physical price, but at least we tried, and we always will attempt things that promise at least a good possibility of lessening my pain and eliminate the need for prescription drugs that are harder to fill than buying a machine gun.

This was toward the beginning of August, where afterward my functionality was already in decline but it continued and seemed to increase its rate of downward spin. Particularly in October, where I seemed to fall off the earth.

The pain doctor changed one of my long acting pain meds to see if we might get a better hold on the leg and face pain. I had an extreme reaction to it. On day 3 the “skin crawling” I had felt at first turned up to a 10. I’d wake up at 3 am to my legs and arms squirming, kicking, flexing— feeling like a kinked hose with full blast water trying to flow through it, impossible to keep still. My muscles would be flexed without my telling them to. My fists would be clenched and my toes curled under my feet, then pointed, back and forth on repeat. Moving felt “good” in a weird way, only because remaining still felt impossible. But I was so exhausted anyway, all this muscular strain helped nothing and only worsened.

On day 4 came an episode that we can’t really explain. I was at the vet with Monty when I was already feeling rough but pretty suddenly felt I like would faint and as though my insides were melting. Luckily it’s across the street from our house, so I cut appointment short, trying in spurts and sputters to explain what dysautonomia was to the vet techs as I sat on a bench before the 60 second ride home. Have you ever heard of POTS? “Like frying pans?” I came straight home, laid down on the couch, drank peppermint water for the intense nausea and iced my aching head. Suddenly I needed to vomit. I wrapped myself around my moms toilet where the bathroom spun but I could only spit. I prayed to puke because the nausea was so immediate, making my face hot and the saliva in my mouth swirl, collect at my lips and pour out like a faucet, but nothing.

I laid on the floor of her bathroom, stuttering and having major issues speaking. My muscles kept clenching, all of them, would become rigid, and my teeth chattered. If I diverted my attention away from breathing it became hard to breath normally. It felt similar to the symptoms of SVT but I was not in active SVT, or I’d taken an atenolol just in case I was, and it would’ve worked by the time I lying on the tile. Something else was happening. I had to focus on just taking normal, deep breaths, trying to stay calm. I was twitching and my muscles were doing whatever they wanted. When I finally stood, unstable on my feet, my parents each held an arm and tried to guide me to the bed—but every time I moved I felt insane vertigo and urgent nausea. Even looking too quickly with my eyes to the left or right caused a flash of the same symptoms unless I lay still on the cold tile floor. I laid around the toilet again and tried to be as still as possible, ignoring whatever my body was doing on its own. My parents brought in a pillow and blanket and Monty laid next to the bathtub.

My body took turns twitching and shaking and going rigid, and I stuttered horribly when my mom asked me questions. The lights were too bright, so I laid there just as the last of the sun was setting. I knew she was conflicted—do we take her to the ER? But we’ve both had enough experience there—no one has heard of my disease. They would look at my prescription list and long, convoluted history and none of it would add up to anything, understandably. (We hardly mention ME/CFS in med school text books, and the printed “treatments” are so outdated, some still state “hysteria” as a cause. If anything, going to a bright, loud, crowded ER would make it worse. She used to be a nurse and was monitoring my vitals the whole time anyway. I told her “Please, no hospital.” But I think she knew I was in better hands at home anyway. I felt awful. Not just physically, but that it had come to this. That my mom had to see me like that. That the place you’re supposed to go for medical help is not a place we can go. All of it felt so backwards, so wrong. And it was just beginning,

It took four hours for the episode to finally dissipate and for me to turn back into normal Mary. Clearly I couldn’t stay on that med, which was incredibly disheartening, because it was the first one that provided relief for both the nerve pain in my legs that I’ve had for eight years, and the mysterious head/face pain that we’ve been trying to figure out for the last 5. No luck. But that med, that pile of gold in a bottle that finally eased the pain for both, was also a med violently rejected by my body, so I was forced to quit it. I cried and cried. I felt angry at my own body. Why wouldn’t it accept something that was finally helping it? It’s hard to hold out hope during times like that.

I was horribly crashed the day after the episode, but we had to go back to the doctor the next day and get my medicine sorted out. Another hour car ride, (thank you Mom and Marc) and we weren’t really told why I would have that kind of reaction—which seemed to fit the bill for serotonin syndrome, something I have had at least one episode of before. But they shrugged it off and agreed it was best to just return to my old regimen. The “good enough” regimen. There was only one huge problem that remained:

The side effects of that new drug I tried didn’t go away when we stopped it. It was as thought a switch was flipped. It began in October. I am still dealing with extreme restless legs and arms and toes and hands (which for eight years prior were 90% under control with lyrica), and my skin crawls as if I’m being tickled from the inside if I don’t take a different med to calm my whole nervous system down. The symptoms are insane without this new med.. SO, just to fill yall in, that was the last quarter of 2017, and I can say objectively, IT ROCKED.

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I am telling this story because it’s just one example of how messed up this situation is, in so many capacities. I have had to see four doctors in order to get the medicine needed to calm down the symptoms caused by a medicine I tried for a short while in October. The DEA is coming down explicitly hard not just on patients but on doctors too and if they’re prescribing any kind of controlled substance. Their licenses are threatened, and they aren’t allowed to treat their patient the way they might normally choose— because an entity that knows nothing about medicine is interfering with their medicinal plan. But more importantly, I’ll never forget what my primary care physician said to me in a recent visit while we continued to try and sort all of this out, as I squirmed like a a worm on the examination table, about to run out of the medicine that was helping keep things ‘calm’ but I was forced at the time to try and ween off of. He’s a very good doctor and extremely educated in Dysautonomia, which is a huge part of MECFS. He said “It’s better for one or two doctors to be prescribing all your meds, not six or seven.” I agree with him. And how nice that would be, if only it were possible.

This is what MECFS patients mean when they say there’s no place to turn, no safety net. A person with cancer goes to the oncologist. A person with diabetes goes to the endocrinologist. Someone with heart disease, the cardiologist. Where does the person with MECFS go? The literal handful of specialists, if they can afford it? And where it’s difficult to fill any prescriptions because the specialist is out of state? Local doctors have often heard of Chronic Fatigue Syndrome, which they often conflate with Fibromylagia—an illness one of my male doctors actually used AIR QUOTES when he said it aloud, as well as “Intersticial Cysitus”. I wanted to laugh high pitched and say with my own air quotes “Yeah, you’re a “really good doctor.” It’s such a joke. We are so misinformed. So uneducated when it comes to such a debilitating disease that is not new and is not rare. I’ll leave the numbers out of it, I’ve said them so many times before I believe they’ve begun to lose any real meaning at all.

By Christmas, as you may guess, I was not doing well at all. It was my favorite time of year and it all felt so tainted— the normal seasonal colors were drab and as I looked out the window of my moms car as she drove me home from yet another doctor appointment, I couldn’t help but cry. It was drizzling and ugly out, and nothing felt balanced or fixable. Just let it out Mary, it’s OK to be upset, my mom comforted me. But I was upset at even being upset. I wanted to be cheerful and play Christmas songs, but everything felt covered in the haze of this disease, the amount of time it took not just from me but from my parents who have lives of their own, and my lack of ability to advocate or do anything I wanted—it was all waring on me. On us. Everything felt like it was falling away.

I was extremely depressed and hadn’t seen friends or felt like I’d done something truly social or fun or meaningful for too long. Everything revolved around finding waking up to and finding physical relief, and then being fought back on every effort we made. I can’t count the hours we’ve spent at Walgreens, arguing that insurance should cover a medicine, or being told that they didn’t have this or that medicine in stock, so we could wait three days or drive an hour to another Walgreens that does. Once we were told they had 19 pills, of my prescribed 120. “I can give you the 19 now, but you’ll have to go back your doctor (an hour away) and get a new prescription written in order for me to fill the rest when we have it back in stock.” Someone. Please. Explain. Everything was a battle. I grew so tired of fighting, for everything. The disease is hard enough, but the logistics of the disease is often just as hard or harder. It is truly, I say this with total conviction, a full-time job. That phrase It shouldn’t be like this would play itself in my head a lot and it was hard to disagree. But what can you do? Keep going. Always keep going.

We had a good Christmas, and thus far I’ve been able to get the treatments I need in order to remain mostly comfortable. Thank you, Dr. Patel, and thank you Dr. Klimas. You truly are heroes to someone like me. I wish the government would leave you alone—-unless it meant funding for research, then come on in yall!

It’s a new year, and for now, I have what I need. (Thank you MOM, and Marc.) How I wouldv’t survived the last part of 2017 without you, I honestly don’t know. I feel decently functional right now and for that I am incredibly grateful. I just felt I needed to write out a bit of what happened last year, because behind it all, I hated that I wasn’t able to devote more of my time to advocating. I was in bed or my house somewhere, thinking of grand ideas that I was too weak to carry out. But enough of that, it’s in the past. I believe this year will be different as I’ve said before and we’ve already hit some major goals, which I will spill soon. So be on the lookout yall and hang on. I know how discouraging it gets, how isolating. I know how hard it is to hear “You’re not alone” when you’re by yourself. But it is the truth. We are getting there, we’re not alone, and we still need outsiders help.

Mom, Marc, Monty, Family: thank you.

Health, Happiness, & Good Things To Come