New Aches Will Figure Out that They Have Nothing on My Old Agonies

My sexy body has been a bastardish diva for some weeks. My medications, chronic pain, the weather, and the fiendish chronic fatigue that comes with Crohn’s Disease have been actively conspiring against my comfort. But they are wrong if they think they can push my face to the wall, (um… to the pillow?) forever.

We (my brain and I) have been studying the situation very closely—we know our flesh and bones aren’t getting enough rest, we know that some of our chronic pain doesn’t come from trauma but from confused nerves that insist on betraying us. We need to be careful with our messed up hip, shoulder, foot, gut… But we need to exercise energy into our being. There are tons of things we can do to keep our heart pumping, to keep numbness from kissing our fingers and toes, to keep sleep from constantly riding our eyelids.

Exercise hurts. Not exercising hurts more… and nudges mind and body towards wasting away. I hate waste, and refuse to be its willing vessel. Tomorrow, I start running… again, at a very s l o w pace. The last time I tried to run, there was some blood… But my gut has been doing much better. I feel stronger.

These days, it’s fatigue that keeps me from moving as much as I would like to move. There are times when it’s rather difficult to keep my eyes open. I suspect some of the lethargy will go away once I can feed on the addictive bliss of endorphins. My doctors and my Piano Man and I are very hopeful. One of my doctors recommended a self-reward system. “After every successful workout session,” he said, “give yourself something you really like, something that lures your brain to get out of bed when you’re too tired.”

I thought the idea was silly. “I can’t think of anything I want, which I don’t have,” I said to my Piano Man.

“What about more money for buying books? It doesn’t have to be a lot (my lover knows just how cheap his lover can be *cough, cough*), maybe 25¢ for each workout. You can buy yourself a new book every…”

His words were drowned by the voice of my bookish greediness squealing about the new titles we would get. Then I decided that the reward had to mean something. So 39¢ (for my age) would make more sense. And if I skip a workout, I must give 39¢ back. Next year, I will get 40¢ per workout. My brain grinned.

As I’ve always done, I will run thrice a week, do calisthenics twice a week, dance once a week, rest one day out of the week, and stretch in the morning and evening every day. I know it sounds like a lot, but it really isn’t… once a body gets used to it. I can’t exercise as hard as I used to, but I can still do quite a bit.

I shall keep you posted. If we are friends on Facebook or Twitter, you will possibly suffer some of my moaning… particularly the first week. After the days of soreness diminish, and the new aches figure out that they have nothing on my old agonies, I will probably tell you about how good the whole thing feels.

1st Day of Week 1
Weight: 148 lbs. – Waist: 34.5 inches
Energy levels: in the dumps…


The Good, the Bad, and the Crohn

Knowing is best. Whoever said that ignorance was bliss must have never spent years of her life waiting for a medical diagnosis. Not knowing fills the gut with anxiety that eats a soul from the inside out. Having answers can hurt, but the alternative promises much worse than pain.

After more than two years trying to make sense of my symptoms, I’ve finally been diagnosed with Crohn’s Disease. To be fair to my doctors, Crohn’s was one of the first prognoses. But since my body didn’t experience some of the symptoms the illness is known for, my doctors couldn’t be sure. For instance, aside from ulcers, stomach cramps, the occasional bleeding, and constant feeling of tiredness, one of the most common symptoms of Crohn’s involves going to the bathroom dozens of times a day. If I watch my diet—and I always do—I’m spared the horror of using enough toilet paper to destroy a small forest. I’ve experienced all the other symptoms, but my doctors (and me, too) always blamed them on the weird bacteria in my belly, on the chronic pain I’ve lived with for years, on eating the wrong thing, and on life’s random suckiness.

Anyhoo, after way too long treating the bacteria, pumping steroids (without getting the cool muscles, which I think is pure crap) and poking and slicing my innards more than is comfortable for anyone, much of the inflammation is gone… But the ulcers, the exhaustion, and a few other things refuse to offer their farewells. So, yes, I’m Crohnic (aren’t made up words just precious?).

Many people I know (and some I haven’t met) would probably be very upset to get a Crohn’s diagnosis. But I couldn’t be happier, my Wicked Luvs. When one goes from possible leprosy to cancer to Crohn’s, one feels an intense need to kiss the gut-eating bastard on the mouth, and tell him, “Come here, you son of a twisted man-whore, and watch me kick your ass!” I mean, we can try saying that to leprosy and cancer, too, but that pair doesn’t seem to care much for threats.

There is no cure for Crohn’s Disease, and treatment of the symptoms is a lifelong process that includes daily ginormous pills, which come accompanied by possible horrid side effects. I’m hoping to get lucky and not be too affected by them. However, since not treating the illness tends to promise anything from a bleeding gut to cancer, I’m willing to withstand a side effect or three.

If my hair falls out, I’ll wear cool hats. And I think I would look fantastic with a henna crown. If my eyes turn yellow, I will tell everybody that I’m a werewolf… If my skin turns yellow, I will say that I’m part Phyllobates terribilis—who doesn’t love golden poison frogs? Some of the possible side effects are not nearly as glamorous, but I’m sure I’ll think of something if they are to visit.

I know that the idea of adding another chronic illness to my collection seems like a huge burden. Some of you might think that I’m mad, that nothing about this can be good. But trust me… there is a lot of good. The biggest good is that I no longer have to wonder why I’m tired all the time.

I always pay attention to my body, so I assumed that my being tired every hour of every day meant that I needed to sleep more… so I slept more… and I was still so damn exhausted… I started mistrusting my body… but no more. Now I can tell my sexy flesh and bones, I know you’re tired. It’s the Crohnic Bastard (yes, I think I’ll call it that), but you got 7-9 hours of sleep. You are fine. So stop asking for more sleep, and let me write… or there will be a reckoning.

My flesh and bones and moi will be quite all right. We didn’t know what to do against untreated holes in our gut, but we know how to bare our teeth in the face of pain. And we really like hats…

…and woody rainbows…
Love Is Love
…and sparkly toes…
Sparkly Summer Toes
I wish to thank those of you who always remind me that I’m not alone. When things look rather grim—and no, I am not talking about looking in the mirror *cough*—few things are as comforting as knowing that we are not paddling alone. Not because we really need someone else in our boat… but because someone is willing to paddle with us, even when we haven’t asked.

A Closed Mind Is a Threat to the Body

Most people who live with chronic pain, or with any of the hellishly labelled invisible illnesses, have probably heard the phrase “It’s all in your head”. Few statements are as hurtful or as infuriating to someone whose life is pretty much structured around the whims of his or her pain. This might explain why it’s so hard to keep an open mind towards a treatment, when doing so involves acknowledging that our heads could control how we are affected by pain.

I understand this. Every time I hear someone say that my pain is all in my head, I want to beat them half senseless, and then tell them that they are imagining the agony, the bleeding, and the missing teeth. Having said that, I wish to point out that we can never allow other people’s stupidity to take away our options. When we close our eyes, ears and minds to what we might consider strange possibilities, our bodies end up paying for our actions… or lack thereof.

I’m saying this because a few weeks ago, while I was going through a back school refresher class, the pain management therapist suggested that a way to help control how much we hurt is to “use our heads and will to stop thinking about pain all the time. Things like meditation, art, and the simple act of laughing can help our brains regulate chronic pain.”

Before the therapist finished talking, a patient started shouting at her. Telling her, “It must be nice to be you and live in a fantasy world where you feel pain only when you want to. That’s my problem with these stupid classes. They are taught by people who have never lost sleep or time to pain, people who are too dumb or blind to understand that the pain in my leg has nothing to do with my fucking head. When you feel what I feel then you can teach me something…”

The man went on and on and on… The therapist was trying to calm him down, but it wasn’t working. I made the mistake of believing that perhaps my status as a fellow cripple would allow me to get through to him, so I said, “You know, meditation and a positive attitude doesn’t really make the pain go away. But they really help me do things (writing, playing, crafting, laughing…) that make me happy, create endorphins and—”

My crippleness failed. The man screamed at me, too. He said that he “wouldn’t be in [our] shitty class if the VA hadn’t threatened to cut off [his] meds” (opiates). He called me names, questioned my sexual orientation, said I “would sing a different tune if [I] hadn’t been a paper-pusher. Some of us got really hurt. We didn’t just pull a muscle while reloading the printer…”

I just cocked my head and stared at him. I said nothing about getting run over by an ATV, or about being badly thrown from a grenade pit, or about nearly crushing my toes under the barrel of a .50 caliber machine gun. I just watched him, probably smirking—I smirk rather nastily when I’m angry. And I was furious; not at him, but at the rigidity of his mind, at his ignorance.

Much (much!) later, I felt bad for him. I found myself wishing he could open his mind enough to let in a bit of hope and a possibility or two. Because it has to be hell to live like that, believing that nothing but a numbing drug (which kills you in so many ways) is the only thing that can help ease the pain… and just for a little while.

I have no idea what everyone else does to deal with their pain. But I’m with that therapist: if we don’t put our minds into the task of making ourselves feel better, if we don’t believe that we are capable of soothing our own flesh and bones, then more treatments (if not all) will fail. The pain is not in our heads, but our heads can certainly do something about how we react to pain.

A Close Mind Is a Threat