Colorado, Crashed, Covid, Catastrophe

It’s hard to know where to start. 

I kept thinking things would get better. I would get better, then I’d write. I’d take a shower first. I’d wait until this migraine subsided. I’d pack a box. I’d unpack a box. And then and then and then. And now…

Now, things are worse than ever! So much has happened since I wrote here last. Now I’m sitting in our living room in Colorado, soaking my infected toe in an Epsom salt bath. I’m icing my head because I’m still stuck in the migraine cycle. I’ve only eaten an apple with peanut butter for dinner because my stomach ulcer went from mild to angry in the last month and I don’t want to upset it. I am weak, heavy, and ridiculously short of breath. We having fun yet?!

I knew the move would be tough. Moving is hard, regardless. Moving when you’re sick is really hard. Moving followed by a severe crash and a world-wide, viral pandemic? Well, that’s just good ol’ fashioned fun.

Remember when we all thought 2019 was such a crap year? HAHAHA.

Matt and I packed up my moms Hyundai in March and drove from Louisiana to Colorado with Monty in the backseat and lots of road trip food. We took three days getting here and it was a pretty fun voyage, except for that part when we almost died on Red Mountain Pass because it’s an insane pass. Four days after arriving, the world turned upside down. 

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That Red Arrow is the Part Where You DIE

 

But things are such a mess on top of that, I barely even think of the damn Covid! No, that’s a total lie. I worry like hell about it, it’s just that the list of worries is extremely long right now. 

For starters, I am a walking catastrophe, it’s almost hilarious. Except that it’s pitiful. In fact I’m more of a sedentary disaster, a truly rare breed of human catastrophe usually only found in the state of Florida. Kidding. You get the idea, I’m about as useful as a trashcan lit on fire right now. A waste of oxygen! And there’s already so little of it in Colorado, as my Uncle Tom says, ‘It just don’t be right.’ 

On top of that there’s a lot of stress and exhaustion in trying to find doctors who will continue treating me, (so far a disaster), praying my toe doesn’t fall off (another day, another story), praying Monty’s toe doesn’t fall off (another day) regaining some functionality (I Just. Want. To SHOWER.) and finding a way to adjust to all this change without blowing a gasket. The move. The covid. The lack of rain in Colorado (Boohoo) I’m trying hard to trust it will all work out. I know so many people are trying to do the same. It ain’t easy.

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Twinjuries

I wish I could remember the last time it was this bad, that way I might recall some pointers on how in the hell to get through it. You always forget how debilitating this thing can get. But I know the answer, even if I can’t feel it intuitively. One foot in front of the other. Such a simple idea, so hard to implement. It’s *litrally* all I’m capable of for now. So it has to be enough, even if it feels insanely insufficient.

Suvival Mode–that’s how a crash goes. Feeling guilty about what I’m not capable of is no help. Just survive the day. Or the moment. And keep moving forward.

Lately much of my life has been reduced to one breath at a time, especially because so often I feel like I can’t even take a full one. The mind tease has been that all the worries condense and implode on my psyche and it’s too much. Too heavy. Feels impossible. This all becomes elevated when you’re too weak to brush your damn teeth. Inevitably, I lose it.

So I have to slow my brain down. Do something to break up the hardened cement of reality in my brain. Sometimes I say some Hail Mary’s, just to interrupt the cycle of overwhelming thoughts. I remind myself, I don’t have to solve every problem in this moment. In fact, that’s not even possible. 

I lift my weary head, and make the next move. This is where having a dog is truly therapeutic. Just going outside and throwing a ball for Monty can help dry up my mind when it’s under water like that. Sometimes it’s just a few steps to the sink to wipe my face. Other times to a book, or sudoku, or funny videos of animals or people falling down. Yesterday it was yelling at Covidiots on Instagram. Real helpful for everyone! Or I reach out for help when I can’t do it on my own. And I’m lucky as anything I have help to reach for.

As I was doing this the other night, (trying to calm my spinning brain) (and crying) I saw Eckhart Tolle on my nightstand. I remembered he would say that’s all there is anyway—this one breath, this very moment. I was stuck, anxiety-ridden, about a future I feared but didn’t exist yet. I opened up to a bookmarked page that said this:

There is always only this one step, and you give it your fullest attention. This doesn’t mean you don’t know where you’re going, it just means this step is primary, the destination secondary. 

Admittedly, I have no idea where I’m going, or how I’ll get there. But I know the only accessible piece of life is right now; the only place we have any power. So maybe all of this is just a supersized lesson in expanding my consciousness! Just great. But sometimes I think I could go on less conscious and that would be fine too. God? That would be fine.

Keep moving Mary. That’s what I tell myself. Even in the depths of despair or discouragement, I try to remember that I’ve been through insanely hard times before (Basically the whole year of 2006 comes to mind) and I can do it again. I remember that others have endured way more than me and emerged. I have to believe that all of this will unfold into something larger, better, and something that makes sense.

Most of all, I try to reassure myself that no matter how painful or difficult things may become, they’re still possible somehow. Frequently solutions arise I couldn’t have planned on or thought of. That’s the beauty of having been through such painful times in the past. They don’t become easier, you just know, by some means, you’ll find a way through this one too.

I mean that or you die–either way. JK. Do I have to keep saying JK? Probably not. 

Just keep moving forward. Every night before bed, I hug my mom goodnight, then Monty and I clunk down the stairs to my room and I think Another day down, we made it. One more shit-show crossed off the calendar with a Red X. It’s very hard to stay “present” during a time when there are so many unknowns. I realize we’re all facing our own personal uncertainties, anxieties and issues right now, within this larger…catastrophe. Yet all we can take is one step at a time.  

For me the quarantine hasn’t been so rough, because I’ve been living what feels like a quarantined life for a long time now. I’m a pro! Being stuck at home is nothing new for me (or most chronically ill people) except now I’m in a different state, and I live in my parents basement and there’s a lot more hand-washing. I realize just how excessively pathetic that sounds, and that’s because it is. But it’s also kind of funny, I think.   

LIVE! From My Parents Basement! That’s a show I plan on ‘producing’ soon. Soon, soon…

Anyway, it’s taken too long to write this. And there’s still so much more to say and catch up on. Stories about the move and the ridiculous drive Matt and I made here and quarantining with my 90-year old grandma! All in due time. There’s plenty of it, and we’ll get there. 

Besides, I know who you’re most curious about anyway. And I can assure you, he seems to be adjusting just fine…

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Hang tough yall. We may all be in different kinds of hardship soup right now, but we are in it together. 

Health, Happiness, Humanity  

*P.S. I dedicate this to my mom, my hero, a little late for Mothers Day, who has seen me through some of my toughest moments and hardest days lately. (Weak gift, I realize) You are a rock, and I know we’ll make it through this the way we’ve made it through everything else– One shit show at a time. Thank you for making me shower. Thank you for everything. Love you a LOT.

2020 Hear Me Roar! Or Meow, Just Depending on Things

Even if the Holidays are officially over, (although Mardi Gras is just around the corner) there’s nothing like the mood set by a lit Christmas tree in a dim living room. Monty is sleeping beneath it, his long breaths almost in sync with the fade on-off feature of the lights–it all sets quite a scene. Like a Norman Rockwell painting in here.

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what.

There’s something about quiet nights like this—just the dog, me, and the glow of the tree, that I feel I’ll remember for a long time to come. Maybe it’s this hidden fear that it’s all about to change, which is true, it is. You always end up missing the ordinary things.

I’m trying to ignore this headache and concentrate on the smell of the fern. It’s not really working, the headache tends to win out a lot. But I’m enjoying the atmosphere  nonetheless. This has been quite the Giving Tree. I only watered it once!

I say it every year, I know, but the Holidays still thrill me because people do nice things for no other reason than “Hey, it’s Christmas” and it’s always been one of my favorite things, ever. I’d been attempting to get a Christmas tree since Thanksgiving weekend but my health wouldn’t cooperate. Two weeks before Christmas my stepdad Marc showed up out of the blue at 2 pm, knocked and swung open the door jokingly singing some Christmas tune. He had a 10 footer in his truck just for me. What a gesture!

I named her Carol and we put her in the corner and she has been a real treasure. It was all the gift I needed really. Kidding—it’s about having family and friends to share Carol with, and having them here was great. Of course, it came at great risk.

A week before my brother and his family of five in tow were to arrive, their oldest came down with a stomach bug. Then the youngest. And on and on. One by one, each day, another would vomit. Another bit the dust. My mom and I would dart our eyes back and forth with news of the next man down, calculating their arrival date in our heads. Then on Friday, my brother Nick finally succumbed to it–they were arriving Monday. The ominous question no one wanted to entertain entered the conversation. Was one dang Holiday worth the rest of us barfing all night? Of course it was! It’s Christmas for Gosh sake!

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Who could do without these cotton headed ninny muggins?

We justified it. We convinced ourselves. No, they wouldn’t be contagious by Monday. Couldn’t be. We’d wash our hands. We’d drink hand sanitizer and bathe in vinegar. Many people convinced me with enough handwashing we’d be in the clear. My mom was more skeptical, but eventually she said a bit defeated What can ya do? If we get it, we get it.

Well, at 1:30 am on December 28th, we got it. Or, got it. Snuck right up on me. I puked so much tinsel I thought I’d puke again. And I did! It wasn’t tinsel, it was kale, I just thought tinsel painted a more festive image. I cursed Christmas, just for a moment, but then thought eh, what the heck. They’re worth it.

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They make it fun.

Luckily the same fam who gave it to me, took care of me just as well. I thought Jeesh, being sick is so much easier with people around! That thing knocked me out. Since everyone left three days ago, I’ve spent every day in bed with a weighted exhaustion and deep ache in my bones. BUT, today was the first day I woke up migraine free and my old lady bones had calmed down at least a little. Progress!

I was thinking how it’s difficult to be in a position of needing help. Chronically that is. A stomach bug leaves, but this chronic illness stuff, it will ware you and your loved ones out. The idea of being a burden is a constant fear I fight. It’s so reassuring to know  your own autonomy and be able to rely on yourself. Losing those capabilities through illness is hard to know what to do with. Asking for and accepting help was more difficult than I expected, especially when you were once so independent. One of the tougher lessons in all of this, I think. But, it becomes easier when you stop resisting it. What you resist, persists, as they say.

Once you start to release the idea of your self that doesn’t quite exist (healthy, reliable), you ease into the reality of being just the human you are. (A wasteland) The best way to handle this is with humility and gratitude. No one likes to help an ungrateful pain in the ass. But someone who is aware of what they require, can reach out for it with grace and acknowledge those who help them with humbleness, is more likely to receive kindness. People are more apt to tolerate and even enjoy your pain in the assness. That’s where being sick surprises me. It can bring out incredible things and open the door for doing good– not just in yourself but in others too.

Speaking of doing good, I wanted to end on a note about advocacy. Namely, what an absent advocate I’ve been this last year. I was sort of on a role, going to D.C., circulating the petition, begging for signatures like a desperate vacuum-cleaner salesmen. Do those still exist? Sending thousands of pages of names and stories to the NIH. Then what?

Besides spending the first three quarters of 2019 in the physical state of a trashcan lit on fire, it was more than a lack of physical health. I lost my footing. You have to find a very particular headspace with ME advocacy, and I sort of lost myself.  I became discouraged at the federal responses, the intolerably slow pace of things, and increasingly saddened hearing the repeated stories of such insanely debilitated people being dismissed, doubted, and deserted by the medical world. Shamefully I admit, it was just easier not to fight. At times I thought What am I doing? Is this going to achieve anything?

You can’t unring the bell, is the thing. Once you see how bad it is, how desperate this situation is, it feels negligent not to fight to try and change it. There are no guarantees in advocacy. But like always, I know inside it’s better to try. Maybe it won’t make a difference today, but our collective efforts are going to change things eventually. All a matter of when.

In the meantime, the fight is infuriating. You have to remain hopeful despite receiving responses from the NIH, like the one below, that tried very hard to list all the ways they were getting serious about MECFS, and even included a Press Release from 2015 to prove they meant business! Effectively their letter said this: We. Still. Don’t. Get It! Orrr, maybe they do get it, in which case their letter said this: We. Still. Don’t. Care! But thanks for writing us, and sending that cute box, haha! What a crock. You can (click) and read the letter below, or someone can make a fart sound and that would effectively be the same thing.

Their response wasn’t infuriating because it didn’t include a promise to immediately allocate $100 million bucks. (Although, that really would help us out GUYS) It was immensely tonedeaf but most of all it just didn’t hold true. I read the words over and over, grasping at vague promises and past “efforts” trying to convince me that they really do care. OK, great. But you can’t just take their word for it, so when you do your due diligence and learn things like NIH funding dropped 25% since 2017 for MECFS research— it’s easy to think OH What in the name of SAM HILL HELL ARE YALL THINKING? Ahem, excuse me. Like I was saying, proper headspace.

So, you get it. It’s tough. But the work is too important. I’ve seen what this disease has done to countless strangers, I’ve lived what it’s done to me, and I continue to watch what it’s done to my mom and most recently my sister. I just wanted to remind myself here at the beginning of the new year, and the twelve or so readers, that this fight is desperately still in need of all our help. It’s absolutely clear the NIH won’t act without a lot of outside pressure and heat and noise; I believe we can bring it.

I’ll do my best to stick with it and continue to try and be creative and positive throughout this fight. As always, I’m open to ideas! The petition is still live and well, but I’ll work on new ideas of how best to work with it.

Being shown and gifted so much kindness in my life, I think the best possible way I can pay it forward is to remain dedicated to this campaign, regardless of how little I think it may matter on one day or hopeless I may momentarily feel. At heart I believe the change we seek is possible. And Monty does too.

Health, Happiness, and the Roaring 2020’s

The In-Between

I’ve been writing at my typewriter way too long. Something about that bright red device with such mechanical three-dimensional features allures me to the window. It also helps that it produces something tangible at the end. Something I can read and underline and scratch out afterward. But it’s made me abandon my place over here! I’m pretending you care. At any rate…

It’s the mooooooost wonderful tiiiiiiiiime of the yeeeeeeear. I sing that around my house when I get a burst of energy. It makes Monty all feisty.

Christmas, finally! No wait, this year flew by. I think. Yeah, it did. It’s funny how most conversations are like “Something about time.” “Yeah, and something else about time!” “Not to mention the weather…” “Oh yeah, and the WEATHER!” Weather and Time, making conversations since the beginning of…well you KNOW!

Today my friend Matt and I are going to get a Christmas tree. And Monty too, if we can fit him in the trunk. Whoa, I meant to write truck. He’d never fit in the trunk. Anyway it’s really not a great Christmas-getting-tree day. It’s warm and soupy outside.

I should try and embrace it. I don’t think Colorado sees humid, soupy days in December.

Meantime I’m prepping myself for Christmas week. I so forward to this week where most the family reunites and we cram as much doing and going and seeing and visiting into one week and make a bunch of magical memories. Then at the end of the week everyone goes home and back to life as usual and I’m left with a body that feels like it’s been bulldozed for the next three months, at least. Sometimes I fear I’m becoming a human Kathy cartoon.

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Ew.

The point is, I know there’s a better middle ground where I can plant my feet. The problem is it involves more saying no. Saying no means missing out, and missing out is really depressing when your family is finally in town but an arms length away. I’m the youngest, so I especially never want to miss out. It comes with the territory.

I think when you’re sick this long you forget what this need to Go and see and do and lunch and dinner and friends! and the zoo! and the park! what’s next?Let’s go!What’s next?Let’s go!– feels like. Wait no, that’s wrong. You do remember the feeling, psychologically–you still have it in fact. You just can’t deliver on it and you haven’t in a long time. That pace of life becomes slowly unfamiliar. And unsustainable. Suddenly you’re surrounded by people who wake up in the morning and put on their pants and go and go and go, and it’s a stunning reminder of what physical health allows. But you just can’t go at that pace, at least not very long. And not without paying.

As a person so physically limited, I live in a fantasy-land where everyone meets up and says “Hey do yall want to just hang around here and play cards and watch movies and throw the ball for that dog who we all love and adore so much and also discuss and agree about the direction the world is taking? Sounds good, I’ll get the hot chocolate going. Elf starts in ten.”

A fantasy, of course. Healthy people want to go and see and do, and they should be allowed to do as they want and not feel like they’re leaving a soldier behind. But it’s just tough when you have sick family members and big groups of people. Each person needs what they need, and we have to learn to compromise where we can. The truth is, well, it sucks. I want to be able to do all of it. But then nobody, really, can do it all.

Ah wonderful, now it’s raining. Real great Louisiana! Wait, last Louisiana Christmas for a good while. Soak it in. Soak all that soupiness in. One moment, I need to turn the AC on.

It always helps me to break up the time I have with my family around Christmas into really small pieces. I try to recognize the specialness of moments (within the moment) and almost freeze-dry them in my head. Take a detailed note of everything and put them in my pocket for later. I have a few of those “nuggets” in my mind from the past that I’ll always hold onto. But it’s not easy. I’m constantly fighting between what the heart wants and what my crap body can handle.

Sometimes we concentrate too hard on making big plans and doing big things, one thing followed by the next and the next. We could probably stand to slow down and smell the poinsettias now and then. But too, it’s nice remembering some of the best parts are in the prepping of the big thing, or the resting afterward, or story time before bed. All the little in-betweens.

Since I can’t keep up with it all, as my body proves to me year after year, I will try and be highly awake for all the smaller, do-nothing moments. Take little snapshots along the way of enjoyable times, even the quick ones, give them a name and collect them like pebbles. It helps to write, of course. Then when your memory fails you, you can read a list of the happy moments you had. It’s about the little things, so they say, so it helps to capture and really treasure those as much as you do the big ones. You don’t always have to make it to the zoo to make a memory that lasts.

Then again, going to the zoo is really freaking fun.

What do I know? I’m still working this out. But it’s on my to-do list this year: Keep it simple. Let people do what they want. Enjoy the time I have with whoever’s around me. It’s obvious and yet, none of these things are done easily in practice. I challenge us all.

You know last year it was my goal to write shorter blogs but more frequently? I totally failed! That’s the nice thing about years, a *new year* always shows up. But usually I’m too weak to move by then. KATHY CARTOON! Ack!

Health, Happiness, Keeping up

 

We All Fall Down. The Stairs. Sometimes.

This all feels like some cosmic joke as I write this, but the sh*t show must go on. I wrote this piece intending to pay homage to the last month, which has marked an unexpected bump in my functionality. All due to a small but sufficient amount of useable energy I encountered, as if finding money in the street. Look energy! Pick it up! 

For nine months, this invisible life force–something you almost can’t really know you have until you lose it–has eluded me. And then, subtly and seemingly out of nowhere, it flipped on inside me like a light switch.

For the last month I’ve been hard at work on an important story about the opioid crisis; the data driving it, the policy, and the affect it’s having on millions of chronic pain patients. I’ve felt compelled to write it and share a side of the narrative that’s gone missing from the national conversation. The point is, I felt functional enough to devote myself to this article in a serious way. Almost every day for two weeks week, I put on real pants and drove to the downtown coffee shop, the one with terrible art work on the walls and unforgivable price tags, where I’d work for hours at a time. Most of you know 2019 has been a garbage pail of health issues, not really allowing exertion like that on my part.

The joke is, I’m trying to write a piece on how great I’ve felt, in one domain anyway, and I am continuously interrupted by how terrible I feel due to one of the more severe migraine cycles I’ve had all year. Also the ice pack strapped around my head keeps dripping water in my eye. Just great.

Despite the newfound strength I came into, my physical symptoms persisted. Migraines, face pain, POTS, cystitis, the badder disaster–all alive and well. The catch? Having this new, albeit small and yes, limited, amount of energy on board has been a game changer in terms of dealing with all the pieces that go into life with chronic illness and pain.

Finally room opened up in my brain and body for a resilience to deal with the symptoms  proactively, or distract myself from them (insofar as possible), or just enjoy the rare freedom you feel when you finally have a choice in how you’ll spend even 1/3rd of your day.

The relief it’s brought has left me in tears of gratitude. Not a relief of pain, but of burden, of carrying this heavy, physical weight around for so long. And finally taking it off.

It feels almost impossible to convey how much more tolerable the experience became,  finally having some amount of energy inside to help take it all on. It’s still a difficult and daily battle, but when you suddenly don’t feel the active force of gravity working against your every move, well, that helps.

What doesn’t help? Falling down a flight of stairs at your cousin Kenny’s house, the night before his moms funeral. Wait maybe that’s the joke. You know, this story is just so Gelpi.

So, maybe my month of reliable energy has begun to wind down. I’ll go out on a limb and say that becoming entangled with an industrialized fan on the steep fall down the stairs and breaking that fan with my face at the bottom, did not help. I had grill marks on my face people! Like some piece of George Foreman meat! Good Lord.

The point in all this was to pay homage to feeling GOOD, and the things you get to do when you’re not stuck in a dark HOLE. And so it shall remain. I’ll tell the Tumble-Down-Kenny’s-Basement-Stairs story soon, I swear it. I’d never hide such comedy gold.

It doesn’t easily escape my mind how bad one day in August was, just two months ago. I couldn’t lift my arms above my head, the weakness and heaviness and dizziness were relentless. My entire head throbbed with pressure, and I felt a total desperation wrap itself around me, barely able to keep my eyes open laying on the couch. I feared the physical feeling of that day would never end. And then less than two months later, I end up here…

Attending a Saints game with family and friends, yelling in the Dome to throw the Cowboys offsides, and most importantly, enjoying the hell out of myself. How could such a transformation occur in such a short time?

I can’t know. I stopped taking one of my anti-vitals. My mom prayed a novena for me after an especially bad few weeks. I pray my Hail Mary’s every morning, waiting for my head to calm down. All I know is the very terrible day in August did end, and for a while at least, I’ve been gifted with enough energy to participate in my own life. I’ve paid a price for things, but at least I did something to pay for. Most of 2019 has felt like a constant hangover without a sip of alcohol.

I just want to remind anyone who’s sick and in a crash or experiencing a rough patch to hang on. I know how desperate and forgotten and isolated it feels. How insufferably long the time can take to pass. (Trust me, this is the first time in 9 months I’ve had some level of functionality) The truth is we just can’t know the future. But given a chance to play out, turning (inward) as a spectator to our lives when we can’t participate in it firsthand, it will usually reveal some incredible grain of truth that will make life sweeter, easier, and closer to whole. At the very least, it will make us hugely grateful for the tiniest of things–and it’s hard to be unhappy when you harness true gratitude from within.

So what does the letup of a nine-month crash finally allow for? Well, really dumb but fun stuff that makes me happy. Like a few weeks ago when I gave Monty a bath. We came inside and I brushed him while watching college football. I noticed the little pile of hair was becoming pretty dense and also that it seemed it could be arranged, as if I worked at it, I could shape it into a smaller, furry replica of Monty. So that’s what I did…

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“Won’t my mommy be so proud of meeeee!”

And YEAH, I’m proud of my work, mkay? It took some real finessing. As you can see, the first few editions were not quite right.

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A bit too wispy…
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A bit too 1950’s mouse cartoon…

You can call this a waste of time and probably not be wrong. The thing is, when you’re feeling well enough to exert yourself in creative ways beyond just surviving, nothing feels like a waste. Things take on a new lightness and enjoyability. Even bathing the dog. Of course Monty was a wonderful and willing model. Speaking of which…

Monty’s good looks should have been earning us money ages ago. Thanks to the Aunt Becky scandal, I learned that “Instrgram Influencer” is a real thing and decided Monty needed to be one. We haven’t turned it into cash yet, but we do get a discount on merchandise from these brands that saw his picture and posted them on their pages. So yeah, we should be earning hundreds upon hundreds of dollars any day now.

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Who. Dat!
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This is what Monty thinks 23 hours a day.

Anyway, I’ve done more than make small, furry replicas of Monty and model him in bandanas. I finished The Snows of Kilimanjaro, which had me enamored for three days straight and I need more Hemingway to read. I’ve continued to work painfully slow on completing sudoku puzzles, as well do a lot of swimming because it’s October and 93 degrees and that’s just, you know, reality now.

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Panting. In the Pool. In October.

In the end, yes, I fell down Cousin Kenny’s stairs. But you know, the fact that I was well enough to be at Kenny’s in the first place, and subsequently do acrobatics with a fan down his stairs–well, that says something. Something good, believe or not.

Here’s hoping the recovery isn’t so bad. I write this as much as a reminder to myself as to others, of how fleeting all this is. That idea used to frighten me, as though nothing were solid and reliable. But now I find it revealing of a truth that’s freeing, a relief. This was always temporary. Changes can come hard and fast, but looking with creative eyes and a depth of perception, we can often find that they’re in our favor. We have to stay awake though. Give life a chance to show you how things turn out. As the adage goes: In the end, it will all be OK. If it’s not OK then it’s not the end. Cheesy, yes, but I can be on board with the idea. So march on soldiers. As always, we will get there.

I’ll just take the elevator wherever we’re going.

Health, Happiness, and the Bruise on my Thigh Has Given Me Three Butts. Three.

Navigating Healthcare When You’re Chronically Sick *and a Chronic Pain Patient (1)

When I say the seven days of last week were the epitome of an absolute disaster of epic Murphy’s Law proportion, I’m not exaggerating. I am psychologically traumatized by the amount of roadblocks that emerged in just trying to carry out seemingly easy decisions the doctor and I agreed on.

It’s hard to convey how defeated it feels to be so desperately reliant on a health care system that appears to lack any incentive to see that you’re taken care of. Pull yourself up by your own bootstraps is a phrase I’ve heard all my life. There was a time when that was possible and I had no excuse not to be totally self sufficient. But that all changes when you lose the reliability of your body. It’s like trying to beat a video game with a broken controller in your hands. 

I feel trapped. Chained to a medical network where in every domain outside of actual face time with the doctor, I am a policy and not a patient. Whether I have access to what is necessary to maintain any health seems to have become almost anecdotal.

My time and energy are consumed by the position of full-time liaison, constantly navigating the logistics between the doctor, the doctors own front desk staff, the pharmacy, the insurance company, and adjusting to the perpetually changing federal laws that affect the dispensing of my medications. Maybe it’s this easy to fall because there are so many gaps between doctor and patient, and they’re widening all the time.

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See? Here I am enjoying myself at the urologists office.

I can’t remember when this part of life with chronic illness became harder than managing the physical illness itself, but that’s where I am now. I’m also realistic and understand that in the context of a multi-systemic disease like M.E., a lot of my time will go to doctors and exams and bloodwork and prescription refills and pickups and insurance appeals etc. etc. etc. That’s simply part of life when you’re sick and I accept that part. (See photo)

What I struggle with is the fact that maintaining my healthcare has become a battle. Keeping up with the aforementioned aspects of my health between doctor appointments is a fight, as constant and reliable as the disease I wake to everyday. 

This probably all sounds generic and obvious to say; But I’m not actually referring to the conventional financial or accessibility issues of our system. I have health insurance. I’m not talking about having an inadequate plan or the absurd price of prescription drugs or the lack of access to good doctors. On the whole I have great doctors. So why, when it comes to that crucial part of fulfilling the medical plan that a doctor and I have decided is in the best interest of my health, am I met with constant resistance from the moment I step out of the exam room?

That resistance fought me at every turn, every day last week. Beginning Monday, the said battle of having my health needs met ensued due to simple administrative mistakes, systemic gaps, and changing federal laws that made shitteth hitteth the fanneth. I will share how the system tends to fail with the slightest pressure, but first I think it’s important to explain my current state of health and why I require the doctors, treatments, and care that I do.

I am writing about this not to pettily vent or point an ambiguous finger—believe me, I’d rather forget it ever happened. But last week was not a fluke. This happens constantly, and it will happen again. But if a chronically sick person with good health insurance and good doctors has to fight this hard and often lose when it comes to basic needs– like prescription refills and scheduling timely follow-up appointments– something is broken. Maybe by highlighting how laws, policies and medical personnel affect the health of an actual person, it may somehow in the end help fix or improve them. Maybe I’m dreaming.

**State of the Human**

Most are familiar with my physical circumstances. Quick status:  I’ve been fighting a chronic disease that lacks treatment or cure since I relapsed a decade ago. As a result of many things going awry in my body, I am in pain all the time. Without precise disease treatment, the best we can do is manage the many symptoms of M.E. In my case, fighting chronic pain is the hardest part.

In both legs I have something called small fiber neuropathy. This is a deep ache, basically everywhere there is skin, and typically a burning in my feet and calves, especially if I stand for more than 15 minutes. My feet often get physically hot and sometimes swell, as though I were some pregnant broad, but nope! All of this began around age 25, when the restless leg syndrome also worsened at the start of my relapse. It’s like an electrified current running up and down both legs that won’t turn off. 

Untreated, my legs ache and burn constantly, but worst of all, they make sleep impossible. At best it comes in one to two minute fits and bursts before the pain wakes me again. Imagine being pricked five times by a safety pin every 90 seconds throughout the night. You’re getting there…

Beyond my legs is my head. Or my brain I should say, because that’s where the pain feels like it’s emerging from. It’s as though my brain were swollen and pushing against my skull from the inside. It’s a chronic pressure and pain with very frequent migraines. Five years ago the pain moved into my face—not an acute pain, a widespread pressure pain like a tension headache, but beyond my forehead it extends to the top of my head, down to my cheeks, jaw, and even my mouth sometimes. On bad days it’s just my whole head.

Some other treatments have included steroid injections in my head and back of my occipital nerves, as well as lidocaine injections in my face to help control/ disrupt this pain.

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See those little bee stings? Those are injection sites. Is it fun getting shots into my temples and face? No. But neither is 24/7 pain, so a few seconds of needle pain is nothing in comparison.

Perhaps underscoring my head pain are the issues with my neck. I’ve had a “bad neck” the way a seventy-five-year-old has a “bad back” since high school. There’s a good chance some of these neck issues are driving the head and face problem, but we’ve not been able to land on anything definitive. Trust me, we’ve tried, and we will continue to. We’ve spent years and years searching for answers, visiting doctors, & trying a lot of techniques—from chiropractors to physical therapy to acupuncture/cupping to two weeks of ketamine infusions (That’s a story I’ll tell soon because…Damn.) 

Lastly I’m dealing with chronic interstitial cystitis pain that resurfaced in December with an infection. We treated and “cured” that with antibiotics, but the pain and symptoms of IC decided to stay. In July those symptoms worsened drastically and have added to my pain load. I am hoping and praying and trying a lot of remedies (including homeopathy) to get the IC under control, but it’s not been easy. I didn’t know it was possible to pee more than 30 times a day but guess what? I think I hit 40 once.

We recently had my MRI’s looked at by an M.E. literate 3rd party who pointed out abnormalities on my brain stem and cervical spine. One included a minor CSF blockage and bursitis on five disks. These structural issues would likely explain a lot of my pain problems and may even be responsible for other symptoms like those from dysautonomia.

Some of these abnormalities can be fixed with surgery, but I have to see a specialist who would decide ultimately the best course of treatment. If it meant the possibility of an end or improvement of this pain, I’d go under the knife tomorrow. I’m ready for my life to start in so many ways, and I do believe we will find an answer to all of this. In the meantime…

Due to this constant high level of pain, I see a specialist and take prescription pain medicine, as well as undergo nerve blocks, trigger point injections, and live with an ice pack on my head to help find relief. This combination of treatments help keep my high level of pain down to a more manageable one so I can have some quality of life. I have not changed the medicine in eight years or the dose in more than four. Want to see what I look like after a nerve block?

Creepy, I know.

I’ve provided my situation regarding pain because this is where most people have a strong opinion one way or another, and more often it’s that you’re just being weak, don’t really need it, or you’re treated like an addict. Often that attitude comes from front desk staff or a pharm tech filling my Rx! I wish this perception would change and that people understood there are millions like me; prescribed to this medicine for the reason it was created: to alleviate physical pain. We take it as prescribed and there’s no misuse. It’s a matter of livelihood. That’s. All.

Having to rely on medicine to evade my natural state of pain is not something I’m happy about or proud of. I’m also aware it’s not a ‘solution.’ But I do know my life would be unequivocally crappier and less functional if I had to face the world fighting such a high level of pain 24/7.

For that reason, I’m grateful for my doctor and for medicine that provides some relief. Until science catches up with understanding my disease and treating it, this allows me not to be tortured at all times. I don’t think that’s anything we should have to feel shame about.

There, now you’re caught up…on one part of the battle ;) More on last weeks clusterbiff and how to prevent it, coming up.

Health, Happiness, & a 10 on the Pain Scale

 

Summer Part 1: The Bill Always Comes

**The Summer of The Winter of Our Discontent**

There’s this key moment in Sudoku, when you find a clutch number that gives way to the others and begin to just fall into place like a waterfall. Much like the card you play in solitaire where you know you’re about to crack it. I had just written in a 6 I’d been trying to find for way too long. So began the waterfall, and I filled in the other boxes proudly– possibly smugly because this puzzle felt like it was out to trick me personally and now I had it in my hands! Until I didn’t, and in slow motion realized I had two number 7’s in the bottom row, and I just wanted to hit myself.

I tried to work backwards to fix it, but it was irreparably blown. I blew it. So, there went the last two weeks.

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Somewhat of a Doodler 

Of course, I’ve been up to other things. It’d be funny if after a month break all I had to show for it was a failed puzzle. Can’t all be winners.

For starters, summer reading. In July I was booklets after finishing Killing Commendatore, and sad I didn’t have more Murikami to lose myself in. Finally I scanned my own bookshelf for unread potential treasures and picked up Steinbeck’s The Winter of Our Discontent, which doesn’t sound like much of an apropos Summer read, but it’s just that. It’d sat idle on my shelf for years, even though that white house on the cover had caught my eye a thousand times. I had no idea the brilliance I was missing! It’s like suddenly realizing an old painting in your closet is worth some absurd amount of money. Once I dove in I didn’t want out, which surprised me when it shouldn’t have. It’s a classic, what did I expect?

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The book was written in 1961, and given the passage of time I expected a natural  disconnect. I’ve been so wrapped up in modern fiction– for too long probably. Yet somehow the America and the People and Assumed Human Decency that Steinbeck depicted 60 years ago were all completely recognizable today. You wouldn’t have to drive long before finding a sister town to “New Baytown”or look very hard before confronting modern replicas of his primary characters. Ultimately he tapped into the problems, desires, personal demons and moral choices most all of us face at some point– it’s just astounding to me that Steinbeck unearthed such deep, quiet struggles and could discern which ones were engrained in us and would stand the test of time.

Maybe that’s a litmus test for what makes a book a classic; if the suppositions and ideas can weather the decades and remain solidly true, unbothered by time, then you’ve got yourself a winner. I guess that’s pretty obvious, but it felt remarkable to come across.

The book reads a lot like a memoir of protagonist Ethan Crawley, who is so likable, in the first place, it’s hard to put down. I felt a relief knowing there was someone else who felt these ways –about money and politics and social hierarchies and expectations. He makes a joke out of probably 85% of his replies, and rarely does anyone get it, or choose to acknowledge it with a laugh anyway. That felt… familiar.

I feel similarly when I watch SNL sketches that crack me up. It’s not in the scene itself, but in the imagining of the writers who wrote the sketch, and knowing that real people out there recognized absurdity the way that I do. It’s easy not to feel seen in the world, but knowing other people see things the same way you do, even perfect strangers, feels like the twin brother to feeling understood. One scene in the book hammered this feeling in…

Crawley and his wife have been invited to another couples house to discuss “business”, i.e. money, but they have to go through the obligatory song and dance first.  That means a formal serving of tea and then petty small talk. Everyone sipped tea and each delivered some anecdote on the subject of tea. He’s bored to tears. When it became Ethan’s turn to chime in, he brought up Danny, the town drunk, and a terrible nightmare he’d had about him. I laughed as he described feeling his wife’s quiet anger that he didn’t keep up the supposedly pleasant tea talk, and now everyone had to comment about a despairing subject. I wonder how many pleasant bouts of small talk I’ve Debbie Downer’ed with an some morbid comment that I found funny? Probably too many. Anyway, it’s a perfect scene.

A few of my favorite passages:

“So many old and lovely things are stored in the worlds attic, because we don’t want them around us and we don’t dare throw them out.”

I don’t suppose there’s a man in the world who doesn’t love to give advice.”

(Ethan)”Is Marullo part of the group?”

(Wealthy friend) “Certainly not. He goes his own way with his own crowd.” (The Italians. Marullo is an immigrant)

(Ethan)“They do pretty well, don’t they?”

(Friend) “Better than I think is healthy. I don’t like to see these foreigners creeping in.”

Sounds familiar eh?

“There is no such thing as just enough money. Only two measures: No Money and Not Enough Money.”

“No one wants advice–only corroboration.”

“I always put it down to fact that a wife never likes her husband’s boss or his secretary.” “All men are moral. Only their neighbors are not.” “Not only the brave get killed, but the brave have a better chance at it.” “For the most part people are not curious, except about themselves.”

I must have underlined half the book.

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Next I read Hemingways The Sun Also Rises, another of the greats that’d been collecting dust not far from Steinbeck. When finishing it I wondered why I haven’t read more of the classics, because this was a damn great book too. There’s no good reason I don’t have more of them under my belt, except that I didn’t take enough literature classes in college I guess, and I hardly know what the real classics are. So, I’ve begun a list. Who cares. Anyway I won’t go so far into this one. As tribute to Hemingway and his distinguished, succinct style I’ll say this: The book is rather great and you should read it. You’ll have a swell time. 

 

Especially if you love Paris, Spain, the Pamplona Fiesta, fishing, Bullfighting, and forbidden love. Hemingway was clearly a romantic. Did you know he was married four times? Only a true romantic gives marriage that many goes. 

The passage that stuck:

“I had been getting something for nothing. That only delayed the presentation of the bill. The bill always came. That was one of the swell things you could count on. …You paid some way for everything that was any good.”

If that’s not the truth I don’t know what is.

I kept thinking about it’s application to health. That very often, when you have your health, it’s free. They say your health is like your breath–you don’t pay attention to it until you lose it. I think back on life before the relapse, and how I’d done nothing to earn my state of ‘decent’ state of health. I’d also done nothing to earn the relapse that eventually followed. It felt like someone at my door, come to collect a bill every day, when I hadn’t purchased anything. When well, I was getting something for nothing, without even knowing it. Once sick I had to begin paying for those somethings, and surrender what I couldn’t afford.

My hope, and I think my belief, is that it doesn’t have to mean the surrender of those things that matter most. When you’re forced to give things up, it feels just that way. But learning to live without them has been an ongoing lesson in letting go of what I thought I needed in order to live a life I liked. You end up finding a whole other you behind those old roles. It offered a strange opportunity to see my own self without these external identifiers. That allowed me to see the world differently too. I’m (still) learning it’s up to me, more often than not, how I choose to see both.

But, as the man said, you paid for anything that was any good. Many things that allow me to feel alive and good come at a cost. It’s like a tax on fun, in the currency of health. Actually I also pay the tax when I haven’t had fun. REAL COOL BODY THANKS. At any rate, I feel fortunate I still have people and places and experiences to (sometimes) overindulge in at all.

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Like him. He’s worth it.

I imagine everyone has their respective “things” or indulgences for which a bill reliably comes. And maybe depending on what point we’re asked, during the playing or the paying, would we consider whether or not the juice was worth the squeeze. For me, mostly, paying the bill feels worth it when I’ve decided to splurge. Girls gotta live sometimes.

Health, Happiness, Paying the Tab

One Arrow Only

Want to hear a funny story?

Well first, some housekeeping. It’s been more than a while, I know. I feel like an idiot bear emerging from hibernation 3 months late and everyone’s like Dude, what have you even been doing? Getting crushed, that’s what.

A health update for 2019: mine is still mostly missing. Hate it when that happens! 2019 has continued to be a slow-rolling, sick train, punctuated by outings to every type of doctor, assuming I don’t call in sick to the appointment. Calling in sick to the doctor; what an absurd reality.

This elongated crash state feels like some kind of warped dream when I reflect on it. I would blame this on the repetitiveness of days that can start to feel indistinguishable from stagnancy. It feels like…

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Day
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After day…
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After Day…
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After Day…
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After Day…
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After Day OK I think you get it…

That last photo was on my way home from a cystoscopy, which they put you under for, thank Gawd. But I was a little…out of it. The procedure is supposed to help the interstitial cystitis, but low and behold, I still find myself having to pee like a racehorse a LOT, soooo, maybe it’s just taking a while to work. Here’s hoping.

As always the creative challenge of life with chronic illness continues. What a strange conundrum, living with a body that doesn’t know how to function as a body. So, what to do?

Reading Murikami’s 19Q4 followed by Killing Commendatore, which I’m sad to have just finished, have kept my imagination wild and busy, and I wish I could thank the guy personally for what joy he’s brought into my life. Reading Murikami’s stories doesn’t just give you ideas to reflect on–it’s a really involved experience just reading one of his books. It’s very involved somehow. As though a real exchange were taking place, but I don’t know how that is possible.

Before walking home from my parents some nights, I think of the characters inside the pages, waiting on me to get into bed and open the book so they can get on finding their way. It’s by far the deepest I’ve fallen into a body of work, fiction anyway, and I have absolutely no idea how he does it. I’m just glad to get lost in something so positive. It’s too easy to fall into counterproductive thoughts or habits when you’re so physically limited. So as always, it takes a good chunk of mental exertion to stay on the right side of the experience and to be cautious in how I tell myself this is all unfolding.

***

For no good reason at all, I get into bed at night and truly believe I’ll be improved tomorrow. I imagine all the things I’ll do. All the catching up and even what clothes I’ll wear while I’m busy bustling around the house. I can see myself cleaning out closets and on the phone, checking things off my list–Monty following me, room to room. I can envision it all, and drifting off, I always expect that tomorrow will be better. And yet for roughly 120 tomorrows, I’ve awoken to mostly a repeat of the day before. Oh real great Universe! 

Now and then I receive some improved feeling that I’m finally rounding the corner of this thing and the worst is over. Perfect! Then either hours later or two days later, I’m paying a high price for what feel like very petty offenses. The invisible line of this thing– it’s the most frustrating part. It makes any kind of management of it feel impossible.

It’s like driving through a backwoods town in the middle of the night without any headlights on. The “warning signals” of this illness are meek and inconsistent. You have to pay such careful attention to what can be a trigger, but even still, it seems sometimes you crash for no reason, or have a full month of migraines for no good reason. It can be hard to see straight at all and you wish you could just turn your danged headlights on!

I  am surprised this crash has endured so long. But maybe it’s silly to be surprised. It’s certainly worthless to take it personally, and yet it’s easy to feel that way. Waking up to the same fight day after day can easily fuel the ego, which will try to convince you of just that. That it’s personal and unfair, and going down that route doesn’t do one bit of good. I have to keep things straightened out in my mind and brush off ideas that are useless and untrue. Maybe the truth is simpler more often than it’s complex. As Tolle says, “It’s neutral. It always is as it as. Nothing more.”

The truth here is, this is the nature of the illness I have. It waxes and wanes, so there’s no reason to be caught off guard or believe I’ll never improve. The fact is this is a disease behaving like a disease. The physical toll and reality are hard enough, no sense getting hit with a second arrow, right? The second arrow is feeling bad about the first arrow. The first arrow is being chronically sick in the first place. One arrow only, please and thanks.

Defaulting back to simple truths is how I’ve been trying to handle all of this, psychologically, but of course it’s not always so easy. Actually it’s never really easy, but it is meaningful when I can find joy and purpose despite it. I’m happy to at least know what ideas and thoughts aren’t helpful to the situation and to vanquish them before they have a chance to take hold and grow. I’m happy to have the counsel and ear of my mom, who hears me out and comforts me when the struggle feels too big, without me barely having to say a word. Talk about gifts you cannot buy.

Despite knowing certain truths consciously, I find myself always questioning myself. I lay in bed thinking This is obnoxious. There must be something I can do. But some days really are just bed-to-bathroom days, and I have to be honest about what I’m capable of. My life feels split in two sometimes, because so much of my communication with people is through text. So I’ll be lying in bed feeling deadly, but texting smiling emoji’s with plenty of exclamation points to show my love and enthusiasm for other people, and I think how strange it is, the dichotomy of the life I project sometimes and the one I’m actually living. I imagine maybe everybody struggles with that, in their own way. We all contain multitudes.

The timing of all this is crappy, of course. There’s never a good time for a crash, I suppose, like there’s never a good time to break up. But there are worse times for each. Being this crashed in the middle of trying to pack and prepare for a move is like the timing of getting dumped on your birthday. Oh well. Even after birthday breakups, people recover. I think.

***

The story!

Last week I was tired of waking up and feeling like I was on my deathbed, naturally. So, I figured there had to be some good meditations on waking up and getting your body psyched for the day. Right now, waking up feels like I went to sleep by getting hit in the head hard with a frying pan, like the characters in cartoons. I’ve also been very weak in the mornings and getting out of bed has been really challenging.

So, I find a mediation easily on youtube, geared toward waking up and energizing the body. It’s 15 minutes. Great. I press play. 25 minutes later, I wake up to a commercial playing and realize the meditation meant to wake me up peacefully sent me back to sleep. Swing and a miss! So, I try another.

This one is also 15 minutes and looks promising. Energizing! it claims. So, I make it through the first 13 minutes. I’m having a hard time focusing because I’m really weak, I’m fighting the bone-crushing fatigue and my migraine is back. But on with the show. The woman guiding the meditation says to repeat the phrases she’s about to say out loud. OK… “Repeat after me” says the slow, assertive voice emitting from my phone. “I feel strong and powerful.” I can’t help but let a smile melt across my face. I say it anyway. “I feel strong and powerful!” “I feel energized and ready to take on the day.” My smile grows bigger. “I feel energized and ready to take on the day.” Now I can’t help but actually laugh. “My body is healthy and my state of mind is focused.” Ummmm…

At this point I am half repeating and half laughing, because I don’t feel these things the woman is saying, like at all. But the fact that it’s making me laugh feels like a success all on its own. A few minutes later, I fall back asleep. BUT, it’ a very peaceful sleep. So maybe it wasn’t a total loss. I imagine once asleep I was “energized and ready to take on the dream.” ;)

Maybe when I’m a little stronger it will work. I don’t think it will be long now, yet I still have no idea why I think that. Owell, it feels good to believe it anyway.

Health, Happiness, and I FEEL STRONG AND POWERFUL

 

Why Is It So Hard to Pee Into Those Urine Sample Cups?

Is it just me?

If it is, then I should feel pretty vulnerable and embarrassed after this. I’m sorry mom. I really do try and make you proud.

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It’s hard to say but I don’t think so. I do think requires more skill on behalf of the woman, I would think. Then again I wouldn’t know, I’ve never peed into one of those “specimen catchers” standing up. It seems like all you have to do is aim and shoot. Though I imagine splash-back could be a problem. Also I’ve heard dudes talking about the “split stream”, which would make producing a clean catch pretty tricky. But that happens to the lady folk too. So I’m a making a leap of faith in assuming I’m not the only one who has issues here. Right? Guys? Right guys? 

I’ve had to give so many urine samples via those small plastic lidded cups over the last ten years, you’d think I’d at least have a technique mastered by now. But there’s just so little prediction in the direction that things will go once the golden exit begins.

You know the order of operations. First you go a little to see what direction your body has decided for the sample to go that day. Cool, you have a good idea. Place the cup in position. Aaaand begin. Aaaaand what is happening. 

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Somethings gone wrong.

It starts to go awry when a renegade stream breaks off from the group for no reason at
all.
Whyyyy. I can’t yell at my pee mid stream and direct it on where to go! It doesn’t respond to verbal orders or worried yelling.  Why would half of this small waterfall decide to break apart from the its fluid crew and travel backwards? Return to the team you idiot!

 

Obviously, things don’t get better from there. The cup can’t catch the rebellious run off and the original stream simultaneously because they’re too far apart, so now I have to guess which one has a higher volume and catch that one. And because I’m indecisive, I start to get a little panicky, I can’t tell which is better. Now I’m going back and forth with the cup between streams because I’m worried the collection isn’t enough, and I’m right. I often miss more than I catch in the chaos. Great. Now there’s pee in places I’d rather there not be pee.  It’s just my hand don’t freak out. (I’m talking to myself now) I mean urine is sterile, so I hear. That was the whole point of those deep breaths I took before beginning the process. You can do this Mary, just pretend it’s a game at the carnival, you’re a competitive gal.

I liken the stress to that of being on a motor bike and panicking that you’re going too fast but in the frenzy you keep hitting the gas, gunning it, instead of the break. You increase in speed until you crash and your shoe flies off. That actually happened to my friend Cody and I once. My shoe really flew off!

Anyway I guess it’s just the stress of getting it right and knowing there’s a limited amount

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The Hell is she doing in there?

of material to work with that I end up internally yelling with my head down “WHAT. IS GOING ON DOWN THERE?! GET. IT. TOGETHER!” It’s like yelling at some kids I’m babysitting who I can hear are misbehaving in the basement. I hope I’m not accidentally
yelling that out loud in the stress of those 30 seconds. I can just see the nurses faces upon hearing the racket inside the bathroom, shaking their heads in resignation, Where did we go wrong with our children?

Now I have to place the cup on the counter, but why is the counter always wet? Is that someone else’s renegade pee? Impossible to know. Also, eeeew. So I awkwardly wipe down the counter, (still squatting on the toilet by the way), place the cup down, screw on the lid, make sure that’s wiped down and examine my sample. It’s like I want the nurses to be impressed with it. “Wow, did you check out Gelpi’s specimen cup? Not even a droplet on the outside!” I realize they’re wearing gloves and couldn’t care less about any of this.

Then you open that little stainless steel door to drop off your cup, and you see all the other specimens. Woah! I’m always surprised by the array of yellow colors that make up peoples urine. It’s like 50 shades of pee in there! I can only hope mine is the right shade of neon.

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This is clearly Ms Gelpi’s perfect clean catch. How DOES she do it!?

It feels like an unnecessarily stressful event that I’ve had to do so many times, I just can’t figure out why I’m not better at it. Is there some method I’m unaware of? I had to give a sample yesterday just like I did last week and the week before that and a month before that, for all kinds of fun reasons. And still, I entered that bathroom, wrote my name on the cup, took a few deep breaths, and once again the urinary chaos began.

At least this time I didn’t fall. Yes, that is a true and exceptionally unfortunate story. It happened in the E.R. and I’m pretty sure they gave me a horse tranquilizer or something close to it prior to calm down the excessive adrenaline. I was in SVT (Supra Ventricular Tacchacardia) and flopping around like a fish out of water. Then I was tranked and expected to give a sample without help! So yeah, I fell. Let that image settle in and make the rest of your day happy.

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Wait, where am I. 

Anyway, maybe I’ll develop a better method over the next few months. Or maybe giving urine samples will always just be one of those things we all have to do that are oddly more difficult than they should be, like hanging curtains. Don’t worry, because I know you might, I’ll let you know if there’s improvement. Stay golden yall! (I had to)

Health, Happiness, A Clean Catch

Lost: Life Force. Answers to ‘Mary’

*I Wrote this last week. I’m feeling better now ;)

Universe, God, sky, grey clouds, screeching frogs outside– helllp meee. Someone drained my life force in the night, and now I lack the will power to even use an exclamation mark. Not sure what happened. But I couldn’t go on letting myself be buried by the wet blankets of my mind. I had to do something. Something positive, and fight back against the road to stagnancy. I felt like I was slowly turning to cement! Hey look there, I used an exclamation point. 

Of course the weather is that in between weather that makes entire cities look like they could use therapy. Not sunny, on the cusp of rain but not raining, just a wet, grey, dish rag that drips sometimes and peeks the sun out in others and never definitively decides what it wants to do. So, can’t rely on the weather to help put humptey dumptey back together again. Find something else. 

I would bathe but I don’t have the energy. My arms are getting weaker. I need to lay down again. I’ll try to think of good things. 

***

OK, I’m back. It’s been almost two hours. I didn’t sleep. My willpower seemed to be dropping like a heartbeat beeping slower and slower on the heart rate monitor. Beep. Beep. Beeeeeeeeeep. She’s a gonner. It’s like all the feel-good, or feel-right chemicals in my brain have truly drained. The stuff that makes you want to go and do and play were drying up. Or already dried. 

While I’m a little weak, a little dizzy, the residual migraine still thudding behind my eyes, it’s not my body making today so hard. Well maybe that’s the setup for this mindset, but it’s calming my frenzied mind when I have no physical ability to match it that feels impossible to do. Keeping your mental sanity while waiting on your body to come back to you is probably the hardest part of all of this—a challenge that needs constant knowledgable reminding about from people who know better. I’m amazed how easy it is to forget simple truths. Clearly I’m still learning. I guess that should probably always be the case, if only I were a bit quicker at picking these things up. 

I feel the need to do so many things, but most of them aren’t doable right now. Then I feel doubly bad about not being able to do what needs getting done. I guess that’s why I’m sitting at this chair and typing, because writing is one thing I can do. 

I have learned that you can fight back against days like this. Despite nothing sounding good—for example, no type of music sounds decent to listen to, and the idea of watching TV or a movie feels even more depressing. (During the day) Even reading the book I’m thoroughly enjoying (19Q4) doesn’t feel right. I read fiction at night. None of these give the impression they would fit. If I were healthy I would go for a run, or to the coffee shop, change up the scenery and get those endorphins going. But since that’s a no-go, it’s another creative challenge to figure out that comes with the territory.

Sometimes just admitting that you’re having a crappy or hard time helps create the tiniest gap between you and the experience you’re having. This is what Tolle teaches—finding space between you and the circumstance so that you might see it from the outside objectively and not get lost in it and take all of it personally. (The Why Me Route) 

You can write it, say it, draw it, sing it, whatever it is. But transferring some of the weight onto some other medium helps prevents you from becoming tangled up and trapped in it—where every thought flowers at once and the idea of living the rest of your life frantically swirls around your head like a hurricane and feels impossible. The enormity of it all piles up because you think I can barely get through today…how will I ever get through the next three months? You start thinking 5 years into the future, your will power plummets, until something—in my instance, Monty scratching at the door— snaps you out of this useless futuristic angst and brings you back to right now. 

All I have to do is survive right now. Which sounds easy but when your willpower is at a zero, it’s actually a praiseworthy task to achieve. I survived another day!  I can’t survive anything 3 months from now, I’m right to think it will be impossible, because I can’t have a clue what will be in 3 months from now. It’s easy to think everything will be the same, and it might. Or it’s easy to see a dozen problems that all feel unsolvable. But all I have to do is look at the history of my life for proof that it can change in a snap, and 90% of the time, you don’t control the change, or predict it. You only go about figuring out how you’ll respond and adapt to it when you get there.

So how do I make now better? Unfortunately having a rebuttal for your mad mind doesn’t make it simply stop in it’s tracks and suddenly you’re grounded and fine. I’m not that good yet. Just knowing what’s helpful and what isn’t doesn’t immediately make you feel happy and give you your life juice back. But it might help slow that thought whirlpool down. It might allow for the smallest stillness to get through to you and allow the truth to calm your fast beating heart. Mostly it involves just having to live through the tension of the feelings and the knowing simultaneously that they won’t last. They may not even be true. As hard as it is to work against something inside you that feels like it’s actively dragging you down or drying you out, I know that trying anything is typically better than rotting on the floor like roadkill and trying nothing at all. 

On my two hour break, I listened to a podcast called Revisionist History by Malcolm Gladwell. I highly suggest listening to it, but it surprised me how just hearing someone else’s voice and someone else’s story can help pull you out of the thought whirlpool of your own. It’s nice getting out of your own head and being exposed to what people before you have met and endured in their life. I listened to Sammy Davis Jr.’s story A Hug Heard Round the World and hearing of his life and challenges put things in perspective, at least temporarily. This is the importance and power of story telling, I think. It straightened me out for a while.

I also downloaded some foreign language apps on my phone a few days ago so I can start to remember and re-learn french. I’ve forgotten so much of it and I miss it. I plan to visit France for a while when I’m better, so I’d like to get back to moderately fluent. I can’t wait to sit on the sidewalk again, drink my cafe au lait at at a table with a white tablecloth, and write in a fresh notebook Well, I’ve finally made it back to Paris. 

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I didn’t want the invisible vacuum of thoughts inside me to win, so I had to fight back and share these crappy thoughts with you, sorry guys. I guess writing these thoughts out was my way to create the gap. The ability to step back and watch today unfold was my way forward. Otherwise I was slowly being swallowed and nobody wants that. This was my version of winning! Hey look at that, I used another exclamation point. That’s my comeback for today, using an authentic exclamation point. A sign of life. Beeeeep. Beep. Beep. She’s back people!

I think for now that has to be enough. 

Health, Happiness, Surviving

Day 3

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OK, there’s a lot of crap in this piece that needs to be re-written or scrapped. Taking on a writing project in the midst of a heavy crash may have been a bad idea in terms of writings to share because than crap like this emerges and I told myself I’d stick to the rules. Even reading it now I can see how convoluted my mind way, how easy it was to stray off topic. I’ve begun to improve since Sunday, particularly cognitively, and the writing really does emulate what’s going on during fog. I had to cross some out because it just meandered and was so clunky and unclean, it was very far from conveying my ideas properly at all. Anyway, as uncomfortable as I feel posting writing I don’t like and probably 2/3 of which I would change, or burn, this was partially the point of the project. So just trust and let go. Besides, there’s like 11 people reading this. I think we’ll all be OK.

Anyway, hopefully I’ve written a little better for day 4, or perhaps I’ll have more crap to share! Either way, it might be enjoyable. Just let go Mary. OK, I’m going. So go then. I’m gone. So go! I’m going! Just. Press. Publish. You Nitwit. Alright, see you tomorrow.

A Few Things Happened

Let’s talk. I’m just going to write in list form. It’s easier on my brain for whatever reason right now.

  1. I SHOWERED.

I can’t explain how good it feels to be clean to such a degree as an hour shower will get you. But even better is the smell of my shampoo emanating from me now. I have so little to brag about, but I have to convey how good it feels to smell this FRESH people. It needed to happen, I was too sick for a while, and now finally it has. I sat on a geriatric shower chair instead of taking my typical bath. My wobbly, cinderblock legs are smooth. My skin is clean and feels almost cottony.  I spent more than 30 minutes picking out Shampoo at Walgreens a while ago, searching for the perfect scent and I seemed to have found it. It’s left my hair emanating the scent of some subtle, tropical, white flower with tiny pink buds (and no nitrates!) Whatever that means. The scent is what Jennifer Anniston’s scarf closet would smell like. A shower is nothing, I realize. But in my bite-size, do-nothing world, a shower and this residual perfume of the Gods makes headlines. “Local Girl Smells Good!”

2. Secondly, in insanity news, the SAINTS JUST LOST. (Pause. Pour some beer out.) It was no one’s fault, it’s just that sometimes a defender leads with his helmet and interferes with a receiver in order to prevent a reception and somehow he doesn’t get called on it and essentially the whole outcome of the game changes. The non-call smelled like the opposite of J Anniston’s scarf closet. It smelled like what an old Southern man with leathery skin would say as he put down his beer with his eyes glared at the TV: AH HORSE SHIT!

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3. Oh good LORD, my hair. This foresty, soapy, new car yet feminine fragrance…How is it even possible?!

4. OK. It’s not like the Saints losing was any one persons fault. These things happen. I mean just like sports writer Jack Baer wrote “If it wasn’t pass interference, the helmet to helmet hit almost certainly should have been called a personal foul. Either way the Saints should have received a 15 yard penalty and a fresh set of downs with a minute 45 remaining, which almost certainly would have effectively ended the game.” See? These things just happen.

5. Idea. Maybe I could charge money for people to smell my hair up close. This is how I can pay for the research that the NIH will not. $100,000 per whiff. It’s also how I can earn some kind of money if my Sofia-Dorothy relationship with my mother goes South or she dies in her sleep and I need to make money to keep the farm afloat. Either one. (Kidding mom, you know you’re my hero and you can never die)

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“Hey Can I Smell Your Hair?” “Yeah, it’ll be $100,00. Make it quick.”

6. I can’t believe that non-call just happened. I still feel so shocked and bummed about it. At the same time I feel so hashtag blessed to smell like flowery beechwood that it diffusses the sadness a decent amount. What if I smelled bad and the Saints had a playoff game that was STOLEN right out from under them? Talk about feeling crappy and smelling like craigs-list. I mean I wouldn’t say the game was stolen from us…it’s just that

7.

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The New Orleans Causeway Tonight. We’re subtle with our emotions.

8. Monty has gas. I realize Monty always has gas, but this seems specific and particular gas. It’s smells sad. It feels like especially offended gas that could only be expelled for a special occasion. He’s looking more sad than guilty, as though farts are the only way he can physically grieve. They are the tears of a game getting blown. The gas makes me sad, but then I smell my hair and feel glad. It’s funny that smells can make us temporally happy or sad. The realm and cause of human emotions is really pretty extraordinary.

9. Were we really supposed to lose that game or was it a comic hiccup? Some existential mistake? Tolle would say it was no mistake that we lost, because it’s the experience we endured. “The fire of suffering becomes the light of consciousness,” he says. But I fear tonight the light will burst from cars lit on fire and a ref that requires a 24/7 security detail. I joke I joke. I believe

10. I wonder if my shampoo truly comes from Maui. Something tells me it doesn’t. But due to the beautiful potency of its scent how could I care from where it emerged?

11. Cleanliness is Godliness.

12. Monty’s gas has begun to transition into “It will be OK. But that call was true and authentic stinky bull-dung.”

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“Just can’t help my grieving gas!”

13. Like my mom says, at least we don’t have to be tense next week.

14. BUT MOM I WANNA BE TENSE I JUST WANNA BE TENSE WITH REFS THAT MAKE SURE THE PLAYERS DON’T BREAK EACH OTHERS HEADS!!!!!! Fine I’ll go to my room. No, YOU’RE being obnoxious! …Yeah I have some darks I need washed.

15. Saints, I’ll be your forever fan. Next years is ours. But on a personal note, you’ve given so many of my Sundays a happy distraction from what hasn’t been an easy year or years. Watching you play has energized me to a happy place, and I’ll always BELIEVE DAT you’re a team of good men, win or lose. I’m grateful you’ve made it as far as you have. You’ve been the joy of Sunday’s for much of my family and I, and I hope you feel the pride of the whole city behind you, my dog Monty, and me. See you next season.

Health, Happiness, Who Dat

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Thank You for a great year! 

 

The NIH Response to the Petition/Package

Since not everyone receives emails from change.org, which is how the updates regarding the petition are delivered, and it’s the beginning of the year, I wanted to make the NIH response available here so everyone had a chance to see it. Get everyone up to date and on the same page. I can’t thank all of you enough for helping make this happen. I’ll post my and some advocates responses to the letter in the next post. So stay tuned.

The response from the NIH was interesting for a few reasons. Just for clarity’s sake, I’ll say it was not an official response–it was a personal letter emailed strictly to Matt. While they never mention the package and only briefly acknowledge the existence of the petition, I know that Collins receieved the whole kit and kaboodle. How? Because a receipt was sent to my email that the package was delivered and signed for by none other than the big MAN himself! Santa Clause! Or Santa Collins…you know what I mean.

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So, now we don’t have to wonder. Anyway, I’ll begin by posting the letter Matt wrote (rubber-banded to mine) that we included inside the box. Following it is the response from the NIH.

Matt’s Letter:

Dear Mr. Collins,

My name is Matt Tyler. Until just a few years ago, I had never heard of anything called Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. And that’s kind of what’s so crazy about the disease. It’s hidden from the majority of us. It wasn’t until I ran into an acquaintance from my younger years, someone who had sort of disappeared from my circle of friends when I was in my mid-twenties. I just assumed she had relocated, had become consumed with beginning a family or a career. You know, normal late-twenties life stuff. Turns out she was dealing with ME/CFS. She had faded into the background not because she had other things in the background to do, but because she was forced to recoil into a bed by a mysterious disease that most of us had never heard of.

I’ve grown very close to her recently and in turn have grown very close to the life that suffering from Myalgic Encephalomyelitis brings with it.  She’s not even on the most severe end of the spectrum, but it still baffles me how she’s able to get up every day (most days, some days just have to involve being in bed all day) and deal with the pain and exhaustion that she feels just because she’s awake. Because she made a sandwich and then walked to the couch.  Because she needed to bathe. And she never complains or whines about her circumstance. She has every right to, but instead she fights however she can. She does things like create the included petition. She exerts the very limited supply of energy she has to give a voice and some hope to the millions of people suffering with this debilitating disease. The millions of people who have been robbed of years of their lives.

You once lived a life where you searched for hidden genes responsible for these types of things. I remember reading once that you would put a sticker on your motorcycle helmet every time you discovered a gene responsible for a disease. I’m sure it was a proud moment applying the sticker representing Cystic Fibrosis. I know that’s not the life you live anymore. Now you get to direct and inspire young versions of yourself. Young scientists trying to make a change in the world. That’s why we need your help. Your influence. Your voice.

The reason for this petition is simple: Allocate more funds toward the research of Myalgic Encephalomyelitis. That’s what we are asking. That’s what the people behind the more than 50,000 signatures are requesting. But I’m sure you understand more so than most of us that by doing that, you are immediately impacting all those millions of people who have been pushed into shadows. If this increased funding happens, not only will the impact happen long term with better diagnostic tools and possible treatments, but you’ll give the people suffering an injection of hope. Hope that they can return to their jobs. Hope that the life they once had and enjoyed is not forever lost. Someone with as much prominence in the scientific world as you making a decision to increase research funding and speaking out about ME/CFS spreads the word about the disease. It might inspire some grad student somewhere to decide this is going to be something they want to attempt to tackle. Some blossoming scientist might decide they want to put a dent in or even end this terrible disease.

I understand that giving more funds to ME/CFS research likely means another diseases’ funding might be reduced. I don’t envy you having to make those decisions. But I can say this. I would imagine in the world where your career exists, the phrase “return on investment” is not foreign. I run a small family business and it’s something I have to consider almost daily. I’m sure it’s a much more difficult metric to calculate in the domain where you must apply it. But I’ll leave you with this: any additional money put towards ME/CFS research, especially if some sort of formal announcement or press release is attached, will yield an exponentially higher return on investment than most other diseases. Because outside of simply robbing people of their careers, health and happiness, ME/CFS robs people of hope. And a life without hope is no life at all.

You have the chance to not only bring about scientific change to help millions of people in need, but the chance to reinvigorate them with hope.

Thank you for your time,

Matt Tyler

P.S.  If you do decide to do what is being asked for in the petition, I will design, make and hand deliver a sticker representing ME/CFS for your motorcycle helmet in hopes that in the very near future you’ll be able to apply it.

***The NIH Response***

Dear Mr. Tyler:

Tell your friend Mary and the supporters of this petition and the me/cfs community to go find the fattest worms they can find, take a seat on a nearby stomp, and eat them at a slow, slow, pace. OK? Thank you and we’ll check back in with you in roughly 10 years from now, mkay? Happy Holidays gbyyyyyyyye!

KIDDING. I had to. OK, Here is their actual response.

Dear Mr. Tyler:

Thank you for your letter to National Institutes of Health (NIH) Director Dr. Francis S. Collins concerning myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).  We appreciate your kind words about his work.  Dr. Collins requested that I respond to you on his behalf.

I am sorry to learn that a friend of yours has ME/CFS.  Your description of her experiences underscores the devastating effects of this disease.  With your letter, you included a petition that asked the NIH to increase funding for ME/CFS research to $100 million.

We at the NIH understand the necessity of improving diagnostics and finding effective therapies for ME/CFS as quickly as possible.  We agree that there is a tremendous need for quality research in ME/CFS.  It may be helpful for you to know that the NIH system is open for any researchers to submit their best ideas for funding excellent science in ME/CFS.  The NIH grant system primarily funds work performed in individual laboratories or clinics by teams of scientists working at academic, medical, and other biomedical research institutions, including industry.  Individual investigators interested in pursuing ME/CFS research can submit detailed proposals through their institutions to answer a broad range of research questions.  Proposals can be submitted three times per year.  Proposed projects undergo a rigorous peer review process at the NIH and are then considered for funding.  Investigators receive critiques of their proposals and have the option to revise them and resubmit.

The Trans-NIH ME/CFS Working Group recognizes the acute need to cultivate more research and investigators to work on ME/CFS.  In pursuit of this goal, NIH plans to bring scientists together with patients and ME/CFS advocacy groups in April 2019 to discuss the opportunities in ME/CFS research.  We also plan a meeting intended to engage early-stage career scientists in ME/CFS.  More information about these meetings is available at https://www.nih.gov/mecfs/events

In addition, the NIH is conducting a study on ME/CFS at the NIH Clinical Center in Bethesda, Maryland.  This study, led by renowned neuroimmunologist Dr. Avindra Nath, is exploring the clinical and biological characteristics of ME/CFS following a probable infection to improve understanding of the disease’s cause and progression.  Recruitment of healthy volunteers and people with ME/CFS is underway.  The study is currently recruiting patients who have had ME/CFS for 5 years or fewer.  You can read about the study at this website:  https://mecfs.ctss.nih.gov/index.html  The following site provides a contact email address and the telephone number for the NIH’s Office of Patient Recruitment:  https://mecfs.ctss.nih.gov/contact.html

Please be aware that the NIH generally does not stipulate the amount of funds for specific diseases.  There have been times when Congress provided funds to the NIH for specific purposes, but those instances have been rare—HIV, cancer, Alzheimer’s disease, and more recently, the crisis resulting from opioid overuse disorder.  In special cases there are NIH-driven exceptions, for example, when one or more NIH Institutes set aside funds by issuing a Request for Applications (RFA).  The RFAs for the ME/CFS Collaborative Research Centers (CRCs) and Data Management and Coordinating Center (DMCC) are examples.

As a result of the RFAs, in September 2017, the NIH awarded four grants to support the creation of a ME/CFS research consortium composed of three CRCs and a DMCC.  These centers will help to build a strong foundation for expanding research on ME/CFS.  The CRCs will each conduct independent research but will also collaborate on several projects, forming a network to help advance knowledge on ME/CFS.  The data will be managed by the DMCC and will be shared among researchers within the CRCs and more broadly with the research community.  You can read about the awards at https://www.nih.gov/news-events/news-releases/nih-announces-centers-myalgic-encephalomyelitis-chronic-fatigue-syndrome-research  We hope that the new centers and other NIH efforts will attract researchers from other areas to propose research on ME/CFS and increase the number of young investigators entering the field.

The awards are just one result of the NIH’s efforts to advance research on ME/CFS with the goals of identifying its cause and finding biomarkers to study disease progression and monitor response to treatment.  You can read about these plans in the following NIH news article from October 2015:  https://www.nih.gov/news-events/news-releases/nih-takes-action-bolster-research-myalgic-encephalomyelitis/chronic-fatigue-syndrome  As part of these actions, the NIH has renewed the focus and efforts of the Trans-NIH ME/CFS Working Group, which is carefully exploring the gaps in our knowledge and identifying the opportunities for research on ME/CFS.  The Working Group will continue to discuss next steps to attract more researchers to this field and expand research on this disease.  You may wish to visit the Trans-NIH ME/CFS Working Group website at www.nih.gov/mecfs

The NIH continues to post research funding opportunities related to ME/CFS in the “Funding” section of that site.  In addition, the information at the “Resources” section of the site may be helpful.  If you would like to receive periodic updates about NIH activities related to ME/CFS via email, please go to that website and click on the link to “Join our listserv” at the bottom of the left sidebar.  The NIH hosts regular telebriefings with the ME/CFS community to provide updates on our activities and answer questions.  Announcements about upcoming telebriefings are emailed via the listserv.

In addition, the National Institute of Neurological Disorders and Stroke, which is the lead Institute for the Trans-NIH ME/CFS Working Group along with the National Institute of Allergy and Infectious Diseases, has recently formed a working group of its advisory council to provide scientific guidance on how best to advance ME/CFS research at NIH.  The working group includes basic scientists, clinicians, Federal partners, advocates, and people with ME/CFS.

We hope that the steps the NIH has taken over the past 2 years and the future progress of the Centers will grow into a major scientific effort in ME/CFS research funded by grants submitted to NIH.  We look forward to working with the community to gain further insights into ME/CFS that will lead to the development of effective treatments and improve the quality of life for people coping with this disease.

Sincerely,

Walter J. Koroshetz, M.D.

Chair, Trans-NIH ME/CFS Research Working Group

*****

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“This is great! We got a response from the NIH!”                                                                        “Yeah, this is a big deal!”                                                                                                                                 “This is bullshit.”

Don’t worry, this may not be exactly what I/We might’ve hoped for, but this provides us good information straight from the horses mouth. There is a great deal of value in seeing how the NIH looks at this issue and what they consider “enough” in terms of how they’re approaching the situation around MECFS. Since some of their advice involved going to congress, this letter can help convey the exact issues we’re talking about when we say there’s a lack of urgency and an overall tone-deaf, dismissiveness when it comes to this disease. Either way, I’m very happy and grateful we received this response, and trust me when I say it will be put to good use. Stay tuned.

Health, Happiness, More to Come!

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

New Study I Made Up Finds Letting Incoming Calls Go to Voicemail Won’t Stop World From Turning

Modern Manners For New & Changing Digital Millenia…

Next Time: The Downfall of the Handshake, With Detailed ‘How To’

(We Seem to Have Forgotten Leaving Many With the ‘Soggy Bread, Flaccid Finger Shake’…shutter)

In the meantime, here is a flowchart highlighting results from the study, and may help you decide whether to answer your phone, or allow a call to go to voicemail so you can call text back at a possibly more appropriate time. This study comes from the University of Life and may be published in the Lancet–still waiting to hear back Screen Shot 2018-07-30 at 2.06.09 PM

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Health, Happiness, Sorry the Font Isn’t Bigger-I was limited. Party On.