pain and gain

If you were to go back and read this blog from the beginning,(1) you’d find one major theme: I am fat and seemingly powerless to be anything but.

Yet, I’m convinced this isn’t true. My dad, around the age of 60, decided he was tired of being overweight and, well, now he’s not. He says he feels better than he has in his whole life. Who says that at sixty, right? So part of me in convinced that I can do it, too. Now. I’m nearly 40, yes, but still 20 years younger than when my dad shed his extra pounds.(2)

I have something working against me though that Dad doesn’t: this stupid, diabolical fibromyalgia. I don’t mean that as an excuse. Honestly. But there are two challenges to trying to lose weight when you have fibromyalgia.

1. Pain

Basically, I hurt all the time. The degree of pain varies, but it’s as constant a companion as my glasses or Rene Zellweger’s penchant for mediocre acting. Also, it’s a roll of the dice as to which body part will hurt on a given day, and for how long. There are times when everything’s just fine, and then I stand up and try to walk only to discover that my hip or my knee or my foot feels like so many unoiled gears. It’s impossible to predict and impossible to work around. Exercise of almost any variety might focus on particular parts of the body, but they generally require all of the other parts to get involved too. So just because my torso hurts doesn’t mean I’ll be okay going for a jog.

Sometimes, the pain is motivation. On good days I think to myself that I’d rather hurt from doing something of my choosing – i.e.: exercise – than simply because there’s thunderstorm brewing three states away.(3) Other days, the pain will take a perfectly good jog and make it a rather slow trod. This is always frustrating, but I try to remember that I have to take it a little easy on myself.

2. Gain

To paraphrase Fat Bastard:

maxresdefault

I eat because I don’t feel good, and I don’t feel good because I eat. It’s been a habit so long now, to eat when I don’t feel well, that I don’t notice when I’m doing it. And fibromyalgia makes me not feel well quite a bit. I need to divorce the feeling from the association, but that’s not unlike tell a cat not to sit in a box.

IMG_2376

It’s gonna take a lot of training…

Nevertheless, I’m convinced that I’d feel a lot better if I lost some weight. It’s just going to take as much mental work as it does physical.

Sigh. Or I could go ahead and have a second helping of ice cream.


  1. Which, I mean, good luck. Even I can’t take that much of myself.
  2. However, though I’ve inherited every ounce of my dad’s stubbornness – and then quite a bit more from my mom as well – I don’t have his willpower. Dad could win a staring contest with wooden owls if he put his mind to it. He could make steel feel weak.
  3. Seriously, this has happened. Sometimes I can’t figure out why I feel like Judge Doom after his encounter with the cement truck until I see the satellite imagery over Illinois. We joke at work that I’m a mutant who’s the opposite of Storm: rather than me controlling the weather, the weather controls me. My X-Men name is Mr. Ots, which is Storm backwards.(4)
  4. We’re clever like that.

ResearchKit

There were a lot of things to get excited about during Apple’s Keynote ’15 this past Monday. Apple Watch.(1) The new Apple store in China. The gorgeous new MacBook. But the one thing I really got fired up about more than anything else was ResearchKit.

ResearchKitReseachKit is a software framework that Apple developed that can turn every iPhone into a device for collecting medical data. At the Keynote, Apple showed off five apps created together with some impressive partners: The Ichan School at Mount Sinai, Oxford, Stanford, UCLA…the list goes on. The apps so far are targeted at research in the fields of asthma, Parkinson’s, great cancer, diabetes, and cardiovascular disease. Each of the apps can help in the diagnosis of particular health problems and assist in gathering data for researchers. It’s a little bit like how Batman turned every device in the city into a spy-phone in his obsession to find the Joker. But, you know, for a less questionable cause.

Anyway, as far as apps go, that all sounds rather mundane, right? Why would I download the Parkinson’s app unless I have Parkinson’s? I mean, if you’re not a researcher, who cares?

I am not a researcher. But what I am is a care-taker for someone with cystic fibrosis. Let me tell you why ResearchKit matters to me.

IMG_1827My wife was born in 1982.(2) Cystic fibrosis research at that time was barely beyond its infancy, so much so that her parents had to visit several doctors to get her diagnosed. CF wasn’t understood but, worse, wasn’t accepted as a valid diagnosis amongst many in the medical community. But the few people who accepted it and the even fewer people who researched it worked together so that, a few years after she was diagnosed, there were treatments available. CF affects the digestive system and the respiratory system. As a child, her problems were mostly digestive. In time, there were medications. When she began having respiratory problems, there were medications and treatments for that, too.

None of those medications and treatments would have existed if not for medical research. In fact, a fairly solid case can be made that had she been born just one year earlier, she wouldn’t have lived. Many of the people she knew from her extended hospital stays – most of them older than her – passed away before they were twenty-years-old. Some of the seminal CF research, the research that lead to medications and treatments, were published in the early 1980s, even those the disease was recognized in the late 1950s.

The genetic marker for CF(3) was found in 1988, after which the world’s understanding of CF’s pathophysiology allowed for the development of medications to address the symptoms.(4) But it also laid the groundwork for the discovery of over one thousand mutations. This wide variance of mutations has yet to be cataloged w/r/t the varying symptoms and pathologies simply because of the number of mutationsthe number of people, and the comparatively small resources of the medical community.

Enter ResearchKit.

Almost anyone with CF can tell you which mutation they have. Almost anyone with CF can tell you which symptoms they deal with most often. But, so far, only ResearchKit has the power to grab such a large sample of people and data and put it at the hands of capable researchers.

And let me tell you, that will save lives.

Furthermore, ResearchKit can gather the same types of data from people who don’t have CF, or, as I mentioned above, Parkinson’s. Why does this matter? Well, if you think back to sixth-grade science class, you might remember that with every experiment you need a control group. With ResearchKit, anyone with an iPhone can be in the control group. Do I have a vested interest in helping Parkinson’s research? No. Will I be in a control group to help with Parkinson’s research, especially since doing so requires almost no effort? Absolutely.

Because for every CF caregiver like me, there’s a Parkinson’s caregiver out there. Our experiences will be different in kind, but similar in effort. I am just as on-board with helping the caregivers as I am with the patients.

Oh, and you know how I said “anyone with an iPhone” back there? That’s not true. Apple made ResearchKit an open source software,(5) so anyone on any platform can get in on it and help out. Brilliant. Just brilliant.

But don’t take it just from me. Here’s a bit from MacRumors that you can read, but I’m going to excerpt the coolest part. After waking up Tuesday to discover 10,000 people because using the MyHeart Counts app, Alan Yeung, medical director of Stanford Cardiovascular Health, said:

“To get 10,000 people enrolled in a medical study normally, it would take a year and 50 medical centers around the country. That’s the power of the phone.”

And the power of ResearchKit, I might add. Yeah, maybe it’s not a flashy, super-thin notebook or a $10,000 watch,(6) but it’s the most exciting thing Apple announce on Monday. And I dare say it’ll put the greatest dent in the universe.


  1. Which I’m excited about because I’m an Apple Fanboy, but confused about how I feel in general. That’ll merit a whole ‘nother blog post when I have more time.
  2. And let’s hope she forgives me for telling you all her age.
  3. It’s a genetic disease, caused by a mutated gene (delta-F 508). The gene produces a faulty protein which doesn’t fold properly and therefore cannot escape the endoplasmic reticulum. Tragically, this is a protein that helps cells transfer water and chlorine, and the subsequent build-up results in extra-think mucus in endocrine glands. Over time, the mucus will build up and, in the case of the lungs, cause unrecoverable blockages that lead to lung-function decline and, eventually, shutdown.
  4. But, tragically, not the cause.
  5. Seriously, has Apple ever made anything open source?
  6. Ugh. Just…ugh.

300

The last time I met with my doctor, he showed me irrefutable proof that I’ve been taking in close to 4,000 calories per day for years. Though my doctor is a general practitioner, his area of interest is diabetes. He’s spent a good amount of his career researching caloric intake and its effects on the human body. There’s no reason not to trust his calculations.(1)

For the first time, it was easy for me to put my weight into proper perspective, which went something like this:

Holy shit! I eat twice as much as most nutritionists recommend! No wonder I’m roughly the size of the Stay-Puft Marshmallow Man!

So I set about trying to lose some weight. My initial goal has been a certain line that most people aren’t aware of. I remember football commentator Al Michaels saying of a defensive lineman, “He’s always been big, but he got into a little trouble during the off-season when he edged up over 300 pounds.”

That’s right, folks. Defensive lineman in the NFL – the really, really big guys whose job is it to push other really, really big guys out of the way – are supposed to be less than 300 pounds.

Which meant I weighed more than a lineman.

He's celebrating the fact that there's someone on planet heavier than he is.

He’s celebrating the fact that there’s someone on the planet heavier than he is.

I don’t remember how long ago I crossed the 300 threshold, but I do remember feeling very disappointed in myself that day. And every day since then, when someone would comment about some other fat-ass over 300 pounds – and it’s always 300 lbs; that’s the threshold for some reason – I would keep silent in my shame.

Goals should be reasonable and involve small steps. So while my overall goal is more much larger, my first goal was to get below that shame threshold.

Today I stepped on the scale, which like a recent ex can bring happiness or pain depending on its mood that day, and saw that I’d hit my goal. I wanted to jump, to dance and scream and run naked through the hall.(2) Instead, I stepped off and back onto the scale, just to make sure.

I got the same number! Squee!

This time I went and got Ashley(3) and told her to watch. I stepped on it for a third time and got the same number! She gave me hug and said she was proud of me, which was awesome!

So, dear reader, for the first time in longer than I can remember, I weigh less than 300 pounds. Not by much, only a few ounces, but it counts. I feel accomplished and proud and, while maybe not light as a feather, at least light as a defensive lineman.

Which is a start. A good start.(4)


  1.  Plus, you know, I have memories of eating like a whole bag of chips and topping that off with a nice, big bowl of ice cream and then maybe a dozen Oreos for dessert.
  2. Which, honestly, even at less than 300 lbs. would not at all be a pretty sight.
  3. After putting clothes on.
  4. Ashley and I are moving this weekend, but if I have time I’ll try to talk about how I’ve gone about losing said weight.

storm front

Last night I was reading a story when I heard a rumble in the distance. I didn’t think much of it, though it turned out to be quite the storm front…which I knew the moment I woke up this morning. Storms set off various of my fibromyalgia symptoms. Today it’s not pain so much as what they call ‘fibro fog’ that’s the problem. Basically, my thought processes are taking maybe three times longer than they should. It’s honestly more annoying than the pain.

So the funny post I had planned for today will have to wait. Here instead is a picture of one of our cats, Chirpet, lamenting that I didn’t have toast with my breakfast today so that I could share it with her.

Chripet

pittsburgh

Long-time readers of this here blog might recall that, roughly every four months, Ashley and I go to Pittsburgh for a check-up with her transplant team. At just about six years post-transplant, Ashley’s doing as well as anyone could expect. So at this point our visits to Pittsburgh tend to be almost like little one- or two-day vacations, just with a handful of lab-work and doctors’ visits thrown in.

We’re about to head out for another visit tomorrow, but this one will be a bit less fun.(1) We have to be at the hospital early in the morning so Ashley can be evaluated for another transplant…kidney, this time.

See, some of the anti-rejection medications that she takes are a bit hard on the kidneys. So while the meds keep her body from trying to kill her lungs,(2) they eventually will kill her kidneys. Some of her doctors think that eventuality is upon us. Others think maybe not just yet. So we’ll see what they say.

Nevertheless, the subject of her needing another transplant – long a possibility – is suddenly much less vague. As far as transplants go, kidney transplants aren’t much to worry about. You can practically get them done at street-vendors these days.(3) But still…Things could go wrong.

She could encounter complications in surgery. She might not wake up. It’s possible she’ll reject the kidney(s). The stress could be too much for her body. This could throw her into rejection: kidney(s), lungs, or all. I might have to kick some intern’s ass because he or she won’t let me stay in the room with her 24/7 whilst she’s convalescing.

These are all possibilities. And they’re all pretty scary.(4)

But we can’t live in that place. Instead, we try to believe that everything will be okay. That we’ll get to be married longer than a year. Longer than two years, four years, six years and so on. That we’ll get to do lots and lots of things together and rack up more and more visits to Disney World.(5) Because that’s a better place to live.(6)

But I might  kick some intern’s ass just for fun.


  1. And not only because we missed Dave by a matter of days.
  2. Which her body rightfully recognize as foreign entities.
  3. More trustworthy than the University of Toledo Hospital, at any rate.
  4. Except I’ve always wanted to kick an intern’s ass. No reason, really. I just figure life as an intern is fairly ignominious. A thorough ass-kicking would only heighten that, giving said intern valuable experience for the future. This is probably why they won’t let me have an intern at work.
  5. We *might* have a problem.
  6. The mentality, not Disney World. They won’t let us live at Disney World.

a tale of two shitties

A shitty modern fairy tale.

Let’s say that there are two shits. Forget about where they came from. They’re just two shits, making it in the world. They go their shit jobs, work shit hours for shit pay. They come home, eat shit for dinner, watch shit on TV. Go to bed and have shit dreams.

So: two shits.

Now these two shits – I haven’t mentioned this – these two shits, they don’t know each other. They live in separate shit houses in different shit neighborhoods in the same shit city. One has a shit-tzu and the other’s more of a cat shit. They dream under the same shit constellations and breathe the same shit air, but they do it with miles of shit roads between them.

Now one night these two, these two shits, each go out with their separate shit friends. They end up at the same shit club. Neither of them are into the shit club’s shit music that’s so shittingly loud it makes them nearly shit their shit pants. So they make like shit wallflowers way in the back by the shitters, which would normally make for a shit night but instead that’s how they find each other.

They learn they like the same shit books. They both play shit ukulele. They are both shitty at geometry and suspicious of all shit politicians. And learn that they both work the same shit hours for shit pay at the same shit job.

And so of course within a week they’re taking their shit lunch-breaks together. Within a month they’re on shit dates at shit restaurants all over this shit city. They laugh at each other’s shit jokes and really honestly truly listen to their shit stories of their shit lives.

Soon, perhaps unavoidably, they become two shits in love.

And like any two shits in love, they eventually have shit sex. And, uh oh, well damn, the shit condom breaks. So a few shit months later they have an adorable, puffy-cheeked little shit baby. They smile shit smiles at their little shit. They are pretty happy with their shit lives, which is nice.

And of course, that shit baby eventually starts churning out some really shitty diapers. Diapers that even these two shits in this shit city with their shit jobs and shit lives don’t want to go anywhere near, that’s how really shitty these shit diapers are.

And that right there is how like shit I feel today. The the shit in that shit baby’s diapers that its shit parents with their shit house and shit jobs in this shit city won’t even dream of touching.

Or, to put it more bluntly, if less scatologically, fuck fibromyalgia.

a fever you can’t sweat out

And that no amount of cowbell can cure.

That is what fibromyalgia feels like. Just without the temperature.

Think about the aches and pains, how simple things can require tremendous effort and unnecessary grunting and sighing.

And think about how you can’t get yourself to roll out of bed. You can’t do anything requiring any more energy than watching a movie. And even then you’ll likely fall asleep.

On the bad days, that’s what it’s like.

I couldn’t get myself to wake up this morning, even after I’d showered. I debated going to work and in the end flipped a coin. At noon, I went back home, lied in bed, and catnapped my way through the afternoon. With cats. Played some video games this evening and read part of a book.

Now if you’ll excuse me, I’m going to bed. All that napping seems to have worn me out.

having fibromyalgia is like being old

Except my skin’s not all wrinkly and I don’t have liver spots. But otherwise…

You know that noise old people make when they sit down? It’s part grunt and part fart, but it all comes from the mouth? Like, as they go to sit, no matter how slowly they move, there’s a point at which they have to like pressurize the cabin or something and this noise comes out. I make that noise when I go to sit down. Hell, sometimes I make that noise when I’m already sitting, like maybe I forgot on the way down or something.

There’s another thing old people do. They’ll be there, standing, sitting, whatever, and they just kind of groan. Just, “Ennnghf.” It sounds like when your house shifts on a windy night, but if your house were an eighty-year-old body. I do that one too.

I’m also never 100% sure I’ll be able to get back up again. I lied down to pet the dog at my sister’s house, but only because my brother-in-law has an Xbox and some good games. Lying on the floor is quite the risk, one I’ll only take in places I’m prepared to stay for a day or three. And even if I can get back up, it’s quite a process. I have to balance areas that hurt and ration which one I’m putting weigh on at any given moment. Too much weigh on too many spots and I’m doing a faceplant wherever I am.

And I can fall asleep like I was born to do it. Just because I’m awake for one sentence does not mean I’ll be awake for the following one. Which is a far cry better than when I was younger and would lie awake for hours trying to fall asleep. But still: no warning. I close my eyes and I’m gone. I can’t control it.

So, I guess it’s time to start wearing my pants up to my nipples and yelling at the neighborhood kids and be horribly, flagrantly racist but it’ll be okay because I’m just stuck in my ways. If I’m going to feel old, I may as well get the perks.