Good, Good, Good…Leg Vibrations

Good, Good, Good…Leg Vibrations

I woke up at 5:12 a.m. today with the uncontrollable urge to stretch my limbs. I stretched, and as usual my muscles all contracted at once, like a collective spasm. It’s frustrating and not at all therapeutic like you’d think a wake-up stretch should be.

But this is normal for me now, and most of the time it leads to a charlie horse style cramp at the base of my neck. That clenching is always followed by a pulsing and whooshing of blood in my head that gives me an intense headache. I’ve never actually timed it, but if I had to guess the headache lasts anywhere between 5 and 15 seconds. When the pulsing calms, the headache leaves too.

That lovely little experience is then followed by what I call leg vibrations. My legs look fine, but inside it feels like they’re buzzing or shaking very rapidly. If I could draw, my artistic representation of the experience would look blurry, like a tine on a tuning fork that’s just been whacked.

After several minutes the vibrations quit. This morning, for instance, my left leg wrapped up its shenanigans just a minute or so earlier than my right leg. While I waited for the odd sensations to dissipate, I had the thought that I should log these things in my Fibro Mapp app.

So I did.

While the vibrations are weird and it’s annoying that they sometimes wake me up from sleep, they don’t hurt. That has made them a back-burner symptom for me. But since I’ve been Googling everything related to multiple sclerosis lately, I was like “Why not see if this could be connected too?”

Leg vibrations are totally a thing.

MS isn’t the only explanation, of course. And I do wonder if my nortriptyline prescription could be a culprit. Even though I’m on the lowest possible dose, it can cause some MS-like symptoms according to Physician’s Desk Reference. That alone isn’t enough for me to bail on a potential MRI though, because, plenty of my nerve symptoms predate my starting nortriptyline in July.

I’m not sure of anything. Basically just thinking out loud here, because I got notice from my primary doctor’s office yesterday that she has already sent the referral for me to go to the MS Center at Illinois Neurological Institute in Peoria. Consequently, I’ve kicked up my overthinking habit a notch or two as I wonder if the hour-and-a-half drive one way and all the subsequent visits and hassles will be worth spending my precious, precious spoons.

Why I Want to See an MS Doctor, Part 4

Why I Want to See an MS Doctor, Part 4

Yes, I realize that I’ve pondered a pretty lengthy list of possible diseases and conditions in the past 24 months or so, including rheumatoid arthritis, Sjorgren’s, lupus, myasthenia gravis, celiac disease, small bowel bacteria overgrowth, POTS (I still feel like autonomic dysfunction is a thing for me, I have just stopped tracking my pulse for my own sanity), and others I can’t remember. Oh yeah, Multiple Sclerosis maybe.

fibromyalgia-meme

And, yes, now I’m going on about multiple sclerosis, even though I already have a fibro diagnosis.

It’s okay if you’re rolling your eyes at me right now. I’m rolling my eyes at myself. But I still want to see an MS doctor.

Each time a medical professional or friend or relative says something to suggest I might be a hypochondriac, I count to five and tell myself: You don’t know what it’s like to be them; they don’t know what it’s like to be you. Then I move on to the next thing and ask, “But have we ruled out this thing yet?”

***

Unless you’re chronically sick too, you probably have no idea just how reasonable it is to question or even believe you have something it turns out you don’t have. I mean, with so much symptom overlap among all of these named autoimmune illnesses…

Ugh. It’s not like I’m researching all this stuff for the thrill of it. I’m doing it because no one else will.

***

Inevitably someone (usually a medical professional) will try to get me to accept that I have fibromyalgia and just move on. I try, I promise I do. But the acceptance never lasts long, and it doesn’t help that others with fibromyalgia say to me, “What the hell?! I have never experienced that symptom.”

For me, fibromyalgia is an undiagnosis*.

At first, it was a helpful way for me to talk about a handful of consistent symptoms without having to spell them all out every time I saw a new doctor. But now I tend to view it as a diagnostic crutch.

When I talk about things that are happening to me, they are dismissed as things that “happen sometimes” with fibromyalgia.

On a related note, why aren’t more doctors curious? All the ones I’ve dealt with—even the “good” ones—pretend, at least to some degree, that they’ve got it all sorted out.


*Operative words here are “for me.” I believe people when they say they hurt and are fatigued; but I don’t think fibro explains enough of my symptoms. Most days I suspect it’s a misdiagnosis or that something else is happening alongside it.

Why I Want to See an MS Doctor, Part1

Why I Want to See an MS Doctor, Part 4

Why I Want to See an MS Doctor, Part 3


So, where was I? Or rather, what part of the story to tell next? This is not a linear tale, if you hadn’t noticed. Basically, I am wondering about the similarities between MS and fibromyalgia.

***

It was Tuesday morning that I contacted the folks at Illinois Neurological Institute about being evaluated for MS. That was after the Walgreen’s incident where I had to lift my leg into the car and also after a few casual “Have the doctors ruled out MS yet?” conversations. But it was before I recalled any of the episodes I detailed in Part 1 and Part 2 of this series.

***

“Before we can see you,” the representative from INI explained, “we’ll need a referral from your primary doctor and all of your records including lab work, scans, exams. We need someone from that office to call us so we can fax them a form to tell them what to fax back to us.”

“Um, OK. So first step is just to have my doctor’s office call you guys?”

“Yes.”

Great, I thought. There are about four too many steps for it to happen without my having to micromanage the whole damn process. Fuck. Fuckity fuck.

With the phone to my head, my laptop battery dead, and no paper nearby, I pulled a leg of my pajama pants up and wrote the needed info on my knee.

***

My primary doctor’s office said she would be out until January 4—which meant a whole week to second-guess myself. Of course, I started immediately.

See, when you’ve seen as many doctors as I have and you’ve suffered through dozens of medical tests that all come back negative, you start to wonder if you’re what’s wrong with you. I asked myself if I was being ridiculous and dramatic for wanting to see MS specialists.

Will it be worth the trouble of getting my records to them, traveling to Peoria, submitting myself to more tests? And what about when all of those tests come back negative? Will it have been worth it then, or will I wish I had just accepted my circumstances?

***

That’s when I decided to visit MSSociety.org and read some patient stories. They all talked about problems with vision, and I remembered that this was the thing that made me decide not to ask my doctor about MS tests several months back.

I have never had problems with my vision. I know it says that 3% of patients don’t have them, but I still don’t think… Oh. My. Shit.

In the middle of that thought, I remembered that time in 2005 when I was watching TV and there was a hole in my vision. And because I’d linked that moment to my vision-blurring migraines between 2011 and 2013, those memories washed over me too.

What if the start of my decline wasn’t in 2014? What if it goes all the way back to 2005? What if those were episodes of optic neuritis or whatever-the-hell?

I Googled with a mission:

…MS and aura

…MS and migraines

…MS and iron

…MS and vitamin D

…MS and GERD

…MS and nerve pain

…MS and burning feet

…MS and IBS

…MS and vertigo

…MS and falls

…MS and fibromyalgia

Long story short, I didn’t find anything that convinced me that being seen by MS doctors would be a waste of my time.

Why I Want to See an MS Doctor, Part 4

Why I Want to See an MS Doctor, Part 4

Why I Want to See an MS Doctor, Part 2

From 2011 to 2013, I worked in a gray, dingy warehouse-turned-headquarters for NAPA Balkamp. (Nothing about that job suited me, as it turned out. However, it did help me identify my ideal place to work. That’s something, I guess.) And in a roundabout way is part of the reason I want to see an MS doctor.

One day in July 2011, I went to my boss’s office a little unsteady on my feet. “Is it OK if I go home? I’m not feeling well.”

“Whoa, you look pale.” He looked up from his computer. “Are you OK?” I was pretty sure I looked ashen and sick because I was terrified out of my mind about what was happening, but I didn’t want to sound crazy or seem weak.

“Some weird stuff’s going on with my vision. I just want to rest my eyes,” I explained.

After getting my boss’s approval to leave for the day, I called Dan and asked him to pick me up from work. I’d just have to leave my car on the lot overnight. “I’m seeing weird spikey squiggles and parts of my vision are blurry, Dan. I don’t think I can drive.”

migraine aura MS.jpg

He told me he was on his way.

***

I tried to keep my shit together during the fifteen-minute wait for Dan to arrive, but it took some effort. I had reservations about walking down the stairs and down to the lobby on my own. (That place only looked ADA-compliant from the outside. Inside was a different story, and riding in an elevator wasn’t an option.)

I clung to the railing as I made my way to the ground floor while trying pretty hard not to look like I was clinging to the railing. Maybe I should see an MS doctor.

Rather than wait in the lobby for Dan to pull up, I went outside and stood in the front parking lot. It was raining, but I didn’t want to go back inside. I just kept thinking that I didn’t want to pass out in front of anyone, because that would be so embarrassing.

I anxiously looked down the road for Dan’s Jeep. How long have I been waiting out here? An hour?

My left arm got tingly from my bicep to my fingertips. I shook it like you’d shake an arm that had fallen asleep, trying to return some blood flow. It didn’t help.

***

When the vision problems dissipated, they left behind a monster headache. Resting made me feel better, and over the next couple of days I was feeling back to my old self. I didn’t make a doctor’s appointment like years earlier. Instead I did a Google search for something like “squiggly lines in vision.”

I found images like the one above, perfectly depicting what I experienced. Sharp, colorful squiggles and blurry spots that prevented me from reading and writing. All of them on web pages about migraines.

So that’s what happened. A migraine. Whew!

I would have several more of these episodes periodically over the course of a couple of years. When they happened at work, I’d turn my desk lamp off and close my eyes for a few minutes. I even welcomed the squiggles and tingles. How sweet of my body to warn me what was ahead.

I logged the migraines for a while, you know, just in case. But shortly after I moved and began working for my current employer, they stopped. My migraine log was lost in the great moving purge of 2013 when I left Indianapolis and moved to Champaign-Urbana.

Because the migraines stopped, I chalked everything up to no daylight in my cubicle, hating my job, and eye strain. Who wouldn’t get migraines under those circumstances, I reasoned.

***

Somewhere along the way I recalled that time I lost my vision in 2005 and I drew my own conclusions.

Doctor I-Don’t-Think-It’s-a-Stroke just didn’t have any experience with migraines.

Pregnancy test? Bah!

Why I Want to See an MS Doctor, Part 3

Why I Want to See an MS Doctor, Part 4

Why I Want to See a Multiple Sclerosis Doctor, Part 1

At Christmas, my mom cut my hair for me while I thought about finding a Multiple Sclerosis Doctor.

Something about sitting in a chair while someone combs out my tangles switches my confessional switch. I told her that Dan and I had recently discussed me going back to a neurologist—someone who specializes in MS—to ask some more questions about ruling it out.

She thought it was a good idea. “Do you remember John W.?”

“Our old neighbor? Sure.”

“He’d come home from work, and walking from the car to the front door, he’d walk just like you do now.”

“Huh, really.” I envisioned him walking up his driveway. I could see the lilted gait, but wasn’t sure if I was recalling actual history or projecting my own walk onto a childhood memory. “I didn’t know he had MS.”

“And you remember me telling you about the wife of one of dad’s cousins that I chatted with at the last family reunion? I was telling her about you. You walk like her too, by the way. She said, ‘that is exactly what happened to me before I was diagnosed.’

“And,” she added, “when I was doing hair at Phyllis’s, I had a client with Multiple Sclerosis. Some days she could come to the salon, and some days she couldn’t. On the days she couldn’t, I’d go to her house. Anyway, she reached out to grab walls and chairs and things for stability, just like you do.”

She finished up with the scissors and switched on the blow dryer.

***

I follow a lot of Spoonies and disability activists on Twitter. Last week, someone shared a link to a video of a person with MS walking.

I watched it several times. The hesitation and deliberation in her shuffle. The way she reaches out for the branches as she approaches them. The way it seems like that one leg isn’t so much participating in the act of walking as it is catching up to the rest of her body.

THAT IS ME.

***

Sometimes people ask me why no one has ordered an MRI yet. I don’t know. Disbelief in my ability to accurately report my symptoms? Blindly trusting my fibromyalgia diagnosis? Money? Insurance?

My primary doctor did refer me to a neurologist last year. He tested my reflexes, then drew numbers on my foot to test for numbness. He smacked a tuning fork and  then held it to a couple of areas, asking me if I could feel the vibrations. He watched me walk up and down a hallway.

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“Why are you dragging your left foot like that?” the neuro asked me. I shrugged at him. “I don’t know.” At the time it didn’t seem absurd for him to be asking me that question. Now, I’m kicking myself for not retorting, “Why the fuck do you think I’m here, asshole?”

But he wasn’t a native English speaker, and his question might have been something more akin to “Is there something not in your records that would explain this?” Still, he didn’t seem concerned that my answer was “dunno.”

He said they could perform some kind of nerve test (like what they do for carpal tunnel, I can’t remember what it’s called) on my limbs, but that he was 99.9% sure it would come back negative and some people considered it painful. It was up to me if I wanted it.

I put it off for months. When I finally consented to have the testing, it came back negative, just like he thought it would. I considered it another dead end.

***

Last night I was reading MS patient stories online. Random people keep bringing MS and finding a Multiple Sclerosis doctor up to me lately, and I can’t get it out of my head. One woman’s story triggered a memory from more than a decade ago.

2005. I was sitting on the couch watching TV when my vision went out, partially. There was a blind spot where an actor’s face should have been. I looked at other things around the room. I blinked. The black hole was still there.

It was freaking me out, so I got up to take a shower as a way of calming my anxiety. The vision loss continued, and I started experiencing a numbness and tingling in my arm. The shower poof felt odd on my forearm. It wasn’t totally numb, but it was not normal.

I was so freaked out by it all that the next morning I made an appointment with my doctor. At the time, I was pretty healthy. I only saw him for the occasional sinus infection or whatever. He didn’t really know me.

He listened to me describe my experience without saying too much. He had a nurse come in and test my blood sugar. Then he asked if there was any chance I could be pregnant and had me pee in a cup.

“Well, you’ve got a bladder infection,” he said. “But you’re not pregnant. I’m going to prescribe an antibiotic.”

He admitted he couldn’t explain the symptoms that had prompted me to make the visit in the first place. All he could offer me was, “I don’t think it’s a stroke.”

The encounter was far from consoling, but after a couple of days the symptoms had gone and I was over the anxiety.

I had forgotten this entire episode and so hadn’t considered it might be connected to my past two years of pain, fatigue, vertigo, and falls. Stuff I need to remember if I see a Multiple Sclerosis doctor.

Until last night.

Why I Want to See a Multiple Sclerosis Doctor, Part 2

More Symptoms: Or, Why I Hate the Doctor Referral System

More Symptoms: Or, Why I Hate the Doctor Referral System

I made a phone call today to the Illinois Neurological Institute (INI) in Peoria to be evaluated for multiple sclerosis (MS). Because there are even more symptoms to discuss.

Let me back up a little. Before we left for my parents’ place for the holiday, we went to Walgreen’s. I struggled as usual just getting through the store, but when I went to get back in the car, I had to lift my right leg with my hands to get my whole self inside and close the door. It just wouldn’t move on its own.

For a while, I’ve had other concerning problems, including issues with coordination—like sometimes it takes me a dozen tries to get a foot through the leg hole in my underwear because my limbs won’t do what I think my brain is telling them to do. I’ve also been trying to wish away problems using utensils, especially using a knife and fork together. I don’t think I can blame it all on lack of sleep or overexertion anymore.

Before, I would periodically shuffle through the house while dragging my left foot. Now it’s pretty much constant. The pins and needles and burning sensations in my extremeties are close to unbearable.

This appointment was not recommended by my primary doc (I just decided I wanted to see someone who knew his or her shit), but I do need her to work with INI before I can see anyone there. I am not in the mood to coordinate my own care, nor do I feel like I have the energy for it. But like every other chronic patient in this broken, red tape-laden healthcare system, I don’t really have a choice.

I will update when I can.

UPDATE: I wrote about my fibromyalgia misdiagnosis.

Perceiving Pain & The Shortest Flare

Perceiving Pain & The Shortest Flare

I flared yesterday, and it’s gone today.

Which means that I was a 7 or 8 on the pain scale less than 24 hours ago, and I woke up at about a 4 or 5.

This is my shortest flare in recorded history. (Yay, iron?)

***

The second time I was in the ER with a gall stone attack (2014), the attending nurse asked me where I was pain-wise on a scale of 1 to 10.

“Definitely a 10.”

She wrote that number on a dry erase board in my room, and then asked me where I’d like to be on that scale.

“I don’t know? Like 5?”

She laughed, but she wasn’t mocking me. “I think we can do better than that,” she said. “How about a 1 or a 2?”

Then it was my turn to laugh. “Uh, okay.”

She gave me IV dilaudid and in seconds, I was totally free of pain.

***

My point is not that I want to be pumped full of dilaudid all the time, but that people who experience chronic pain will happily accept any improvement on their current circumstances—even if that’s somewhere between “nagging pain, uncomfortable” and “miserable, distressing.”

Whereas compassionate people who have no experiential concept of chronic pain will be like, “Why the hell wouldn’t you ask for a 1? Dilaudid exists for a reason.”

***

On a related note, I typically call today’s 4 or 5 “better.” And I’m actually pretty happy to be here, because relative to yesterday’s misery this is better.

But I’m still hesitant to say the words “I feel better” because that can be interpreted as “I feel all better.”

For some people saying “better” is like saying “I had the flu last week. Today I feel better.”

Yeah, my “better” is nothing at all like that.

Books I Read in 2016

Books I Read in 2016

I don’t read near as much as I did when I was younger. Partly because adulthood means more time working and less time “hobbying” but also because fibromyalgia and its accompanying symptoms can make reading a struggle. And who needs more struggle, right?

Anyway, these are the books I got around to finishing this year. Complete with my Amazon referral links.

The New Jim Crow:Mass Incarceration in the Age of Colorblindness by Michelle Alexander

“This book directly challenges the notion that the election of Barack Obama signals a new era of colorblindness. With dazzling candor, legal scholar Michelle Alexander argues that “we have not ended racial caste in America; we have merely redesigned it.”

If you think everyone in jail belongs there, you are terribly misguided. If you don’t believe we disproportionately imprison people of color, you’re wrapping your arms around a fact-free narrative. This book will wake you up.


Brooklyn by Colm Tobin

“Colm Tóibín’s New York Times bestselling novel—now an acclaimed film starring Saoirse Ronan and Jim Broadbent nominated for four Academy Awards including Best Picture—is ‘a moving, deeply satisfying read’ (Entertainment Weekly) about a young Irish immigrant in Brooklyn in the early 1950s.”

I just thought I’d read the book to see what all the fuss was about. It’s a decent read.


The Everything Box by Richard Kadrey

“Reminiscent of the edgy, offbeat humor of Chris Moore and Matt Ruff…a dark and humorous story involving a doomsday gizmo, a horde of baddies determined to possess its power, and a clever thief who must steal it back . . . again and again.”

This was a fun and easy read. I was even able to crank up the font size on my Kindle and read it with a migraine. Nice distraction from the pain, plus a few good chuckles.


The Perks of Being a Wallflower by Stephen Chbosky

“Read the cult-favorite coming of age story that takes a sometimes heartbreaking, often hysterical, and always honest look at high school in all its glory. Also a major motion picture starring Logan Lerman and Emma Watson, The Perks of Being a Wallflower is a funny, touching, and haunting modern classic.”

I didn’t hate it. I basically read this just to be in the know; it gets referenced quite a bit in my social media circles. It was okay, but it didn’t really grip me. Still, I see what others appreciate in it.


Landline by Rainbow Rowell

“Landline asks if two people are ever truly on the same path, or whether love just means finding someone who will keep meeting you halfway, no matter where you end up.”

I’m a fan of Rainbow and her female characters. This book kind of put me in the mood for the holidays with it’s Christmas timeline, too. Bonus!


Eleanor & Park by Rainbow Rowell

Eleanor & Park reminded me not just what it’s like to be young and in love with a girl, but also what it’s like to be young and in love with a book.”-John Green, The New York Times Book Review

Have I ever mentioned that I used to work for John Green when I was living in Indianapolis and attending IUPUI? If he recommends a book, I’m going to look into it…eventually.


The Nest by Cynthia D’Aprix Sweeney

“Every family has its problems. But even among the most troubled, the Plumb family stands out as spectacularly dysfunctional. Years of simmering tensions finally reach a breaking point on an unseasonably cold afternoon in New York City as Melody, Beatrice, and Jack Plumb gather to confront their charismatic and reckless older brother, Leo, freshly released from rehab.”

I picked this out because it was in my OverDrive recommendations and I didn’t have to get on the waitlist to check it out from my local library on Kindle. Not disappointed.


The Fibro Manual by Ginerva Liptan, M.D.

“If you suffer from fibromyalgia and are struggling to get help from your doctor, you’re far from alone…. In this unique resource, Ginevra Liptan, M.D., shares a cutting-edge new approach that goes far beyond mainstream medical knowledge to produce dramatic symptom improvement.”

There are a couple of other fibromyalgia reads on this list. If you only read one of them, this is definitely the one I recommend.


Beyond Belief by Jenna Miscavige Hill

“Jenna Miscavige Hill, niece of Church of Scientology leader David Miscavige, was raised as a Scientologist but left the controversial religion in 2005. In Beyond Belief, she shares her true story of life inside the upper ranks of the sect, details her experiences as a member Sea Org—the church’s highest ministry, speaks of her “disconnection” from family outside of the organization, and tells the story of her ultimate escape.”

Being born into a cult. Just…damn. Excellent read.


The Fatigue and Fibromyalgia Solution by Jacob Teitelbaum, M.D.

“This book discusses research and advances in treating chronic fatigue syndrome, fibromyalgia, and the baffling, often dismissed symptoms associated with these debilitating conditions.”

I read this book after Liptan’s and don’t feel like it offered much new or different info. I think if I had read it first, might have preferred it. Hard to say though. No do-overs!


Take Back Your Life: Find Hope and Freedom from Fibromyalgia Symptoms and Pain by Tami Stackelhouse

This is the self-helpiest of the fibromyalgia-related books I read. I skimmed so much of it because it just wasn’t doing it for me. However, if you’re into the life-coaching scene and don’t mind reading obvious statements wrapped in positive speak, this might be encouraging to you.

Read what you want. Get the help you need.


Going Clear: Scientology, Hollywood, and the Prison of Belief by Lawrence Wright

“Lawrence Wright—armed with his investigative talents, years of archival research, and more than two hundred personal interviews with current and former Scientologists—uncovers the inner workings of the church.”

Horror movies and stories have nothing on Scientology in the nightmare department. This books is fascinating. I picked it up after watching the HBO documentary of the same name.

Fibromyalgia Med Check

Fibromyalgia Med Check

The second week on iron supplements has not been as dramatically fabulous as the first week was. Here’s my fibromyalgia med check.

I’ve read that it can take a couple of months for the iron-deficient anemic to feel all better. I don’t know what that means for me, exactly. I don’t think I’m anemic per se; I think whatever is wrong with my body has depleted me of essential vitamins and minerals.

So what’s my next step? To keep taking the iron.

If everything is magically fixed because of it, hooray! If it’s not, at least I feel alive now. I’m also trying the probiotic thing again. I honestly don’t know if the Align helps, but the GI doc recommended it and I’ve got four weeks of capsules left.

I’m also now officially convinced that the weight I lost over the last few months had nothing to do with my willpower and everything to do with my IBS. Reversed course on the IBS and all the weight came back. But fuck it, weight is not my first priority. It’s not even top ten right now.

So pill roll call. Maybe TMI for some, but mostly posted so my fellow fibromyalgia patients can compare/contrast.

Levothyroxine*, daily AM
Tri-sprintec lo*, daily AM
Ferrous Sulfate (iron) 325 mg, twice daily with meal
Zinc, D3, Magnesium, Calcium combo pill, twice daily with meal
Align, daily with lunch
Nortriptyline, daily at bedtime
Nexium, every other day/as needed (Rx is for every day, but I discovered I could be symptom-free taking it less frequently)
Medical marijuana, 1/4 gummy as needed at bedtime

* Prescribed many years before I had any fibro symptoms, but thought I should be thorough.

Bye Bye Food Baby

Bye Bye Food Baby

Last night while lying in bed, I had a thought.

Maybe when we’re at Mom and Dad’s place for Christmas, I can walk to Joe’s Pizza & Pasta.

***

The biggest change in me since starting the iron supplements about a week ago has been my ability to see a different kind of future for myself. For several months, my health has done nothing but decline. No “remissions” or “good days” or even good moments.

I’d moved way beyond things like not being able to mow the lawn or drive my car and entered a very scary new place where inhaling was just this side of impossible. I struggled to sit up in bed, fell when I tried to walk. I stopped using my walking cane because I didn’t have the strength to hold on.

I could feel my system shutting down every time I ate or drank anything. My body was telling the rest of me, “Fine, we’ll try to deal with this food, but you should know that means you can do nothing else.” Eventually, I could sense my gut was just completely paralyzed. But not eating hardly seemed like a solution.

I was perpetually hungry, and I was perpetually unable to process what I ate.

For weeks I’d been asking myself questions like…

Am I dying?

How will Dan deal with the mortgage, taxes, utilities, food expenses if I am not here?

Where would I want him to spread my ashes?

Should I try to get more life insurance?

If all of this seems over the top and a little melodramatic to you, I assure you it is only because you have not been living inside this body of mine.

***

“I don’t know how to explain this,” I said to Dan this morning, “but I feel like I’m getting myself back.”

Dan didn’t say much, he just let me continue with what has recently become my morning iron supplement report.

have to talk about what’s happening right now. I’m excited and overcome with joy. Sharing is an impulse, like raising your hands in the air and closing your eyes to see if the Holy Spirit is as tangible as you think it might be.

“Every piece of me—my legs, arms, skin, bowels, mind—all of it felt disconnected by the pain and the fog. They weren’t parts of a whole me, they were all just these separate burdens I was forced to drag around. No escape, no peace. Not ever.

“But last night there was no burning sensation in my legs or feet, and I woke up this morning knowing that I had slept.”

***

All day yesterday my stomach creaked and groaned, making the kinds of noises you’d expect to hear in an old house with radiant heat that’s starting up for the first time in about a decade.

Tick tick tick tick.

Creeeeeeeeak.

Hissssssssss.

I looked down at my food baby, conceived from a modest lunch, and smiled.

See you ’round, fucker.

***

Joe’s Pizza and Pasta is four-tenths of a mile from my parents’ house. It’s a favorite for Mom, Dad, Dan and me. In fact, Mom and Dad are regulars there because it’s so close and the pizza is so good. The waitress sometimes puts in their order when she sees them pull into the parking lot.

Ten days ago, I wouldn’t have let myself even dream about walking to the restaurant for the holiday pilgrimage.

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