At the outset of this blog and this project, my primary goal was to eradicate daily pain from my life, and get as much increased flexibility and mobility as the Botox would allow. Although we haven’t quite got it licked yet, I’d say we’re really really close. I’m hopeful that the next round of injections, which will include two new muscles, will get rid of the pain completely (fingers crossed). So now I’m on to phase two, which is the Fierceness Campaign. This campaign is about more than dropping some body fat and building some muscle. Really what it’s about is about becoming truly proud of my body, what it does, and what it looks like.
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Erm, ok. I really don’t have a good excuse for not having shown up here for most of the summer. I could say I was traveling–which is true–or that I was busy with out-of-town guests–also true–but neither of these is a good excuse for being a negligent blogger. This time I have to cop to something even worse: July was a fairly light workout month. In the past month I’ve probably averaged about 2 workouts a week, far less than I should be getting. I was out of town or I was recovering from being out of town. It was 975 degrees outside. The list of lame potential excuses goes on.
Although the last round of injections solved a majority of my back problems (whoot!), my balance has really taken a hit. This isn’t so much because of what we treated with a wallop–the adductors–but what we had to leave alone as a result. My solei–the calf muscles predominantly responsible for helping maintain balance–are very, very angry. They’re contracting in seriously inappropriate ways at massively inappropriate times, pitching me forward and sending me into spontaneous face-plants. I’ve fallen three times in the last month, far more than usual. Last week I was standing still and I fell over! It was classy. I ended up with rug-burn on my chin and shoulder, and sprained my ring finger. I’ve begun telling people that I’ve taken up motor-cross in my spare time. That’s far more entertaining, and less embarrassing than: “Yeah, I was standing in my office and spontaneously fell over.”
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I’ve promised a treatment update for about a week now. For once, I haven’t been lazy or obfuscating, but rather waiting strategically for a good time to post. Letting things settle in and even out so I can give an accurate account of the results so far.
The verdict: Yeehaw! Boo-ya! Hallelujah!
We finally hit the major culprit, and hard enough! We doubled the dosage in my adductors–hitting some of the little muscles at the top of the inner thigh–and BINGO, 80% of the remaining pain, gone! Although the drugs generally take a few days to kick in, I felt relief within hours–after a drug-diffusing cardio workout. I was lying on the couch and realized that much of the persistent tightness in the piriformis was gone, and the nagging nerve zing? Gone! I sprang up off the couch, and did about 57 exercises that usually guaranteed discomfort and pain. Nothing, nada, zip!
I sent a thrilled email to PTE entitled “Hallelujah” or some such nonsense. She called the next day so that I could squeal at her into the phone, we rejoiced because literally things stopped being such a pain in my ass. My neurologist is lucky I didn’t call and squeal at him too. I spent about three days squealing and dancing around my kitchen. As things have adjusted over the last couple of days, I’ve developed some aches in new places, some of the twinges have returned but in lesser forms, more easily remedied. In my experience, this happens for a while–things shift, muscles and joints find new ways of moving, some joints and muscles get aggravated. I try not to get too discouraged that it’s not instantaneously perfect. Every time I get over-critical about remaining gait idiosyncrasies, I remind myself that we can still tinker with muscles and dosages. I also try to remind myself how much worse it used to be.
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Since starting to write this blog I’ve been trolling online message boards looking for comments from other adults with CP about their experiences. I’ve never actually known anyone else who had CP. I mean, of course, I’ve met other people with CP, but I’ve never actually had any friends who shared my experiences. I thought that perhaps my struggles were unique, that it was my lack of knowledge or my staunch refusal to even try to seek out CP specialists were what prevented me from finding the help I needed.
What’s been surprising is the number of people who mention the same reticence to seek medical care in adulthood–even if it were available. It seems to me that among folks with what seems like mild/moderate cerebral palsy there is a common desire to blend in, to insist that you are just like everyone else, to maintain a stiff upper lip, even at the expense of managing symptoms. So maybe I haven’t been as alone as I thought?
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Does that ever sound like a Reagan-era public service announcement?! What that headline probably should say is: Drugs Are Only Part of the Solution. In my last post I talked a little bit about my search for solutions to my recurrent back pain over the last couple of years. It would be easy in looking at this blog to make the mistaken assumption that Botox injections alone were the solution to my problem. I’ve often described receiving my first round of shots as “my Christmas miracle” and natter incessantly about how this experience has changed my life. But without sounding conceited or overly self-congratulatory, I have to admit that the improvement I’ve seen has not been a purely pharmaceutical “miracle.” It was born of literally years of hard work. The miracle that the drugs worked for me is that they made my work more effective.The two things that the drugs do is temporarily decrease spasticity and as a result, decrease pain. The rest of it? The improved gait, increased strength, etc.,? Much of that comes from the hard work.
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So I earn a failing mark for consistency in blog posting, that’s clear. And this week I also earn a fail in the workout department, due to a Spring head cold. Is there anything more demoralizing than feeling like death-warmed-over when the sun is shining?
I’m on the mend and feeling extremely chipper today: it’s Saturday, I have a new ice cream maker and some new magic UnderArmour, and I had an awesome physical therapy appointment in Baltimore on Thursday. I’ve got less than a week before my next round of injections, and although some of the spasticity is, of course, returning to my legs, my gait continues to improve and my back is remaining (miraculously) aligned. Read more…
So on to the fitness update: since I posted last I’ve been working hard on my stamina, which seems to have taken a bit of a hit since Botox, phase two. It’s not surprising really. My body is adjusting to a new equilibrium and acquiring new skills. Muscles that have been semi-dormant for years are waking up and joints that have been immobile or have moved inefficiently for more than three decades are beginning to shift. It’s been a little more exhausting than I counted on. I’ve been getting fewer workouts than usual, but I’ve been concentrating on walking correctly everywhere I go.
Walking is more complicated than you realize–and breaking old, inefficient habits is difficult. Walking is a skill I am having to recultivate, which takes a huge amount of concentration. There’s a litany of things to remember and postures to maintain: lead with your heel, it should strike the ground on the outside. edge. Then roll around the outside of your foot and push off with your big toe. Keep your hips in a neutral position and engage your abs and glutes to make sure it stays there. Be sure to engage your hamstrings as you swing your leg forward, so you don’t catch your toes. . .as you swing that leg forward turn your knee out slightly. . . . and on and on.
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I’m trying to get back on the blog-maintenance wagon, really. Lots of things have been going on lately, for me personally on the fitness front, in politics with the health care reform, and in medicine as related to the treatments discussed here. I’ve dutifully bookmarked the articles I’ve found, I’ve mulled them over, I’ve drafted some posts, and yet nothing has shown up here. I don’t even have a good excuse. So as far as blogging goes, my motivation is distinctly lacking. I’ve been thinking about motivation a lot this week: who has it, who doesn’t, how to get it and how to keep it when things are rough.
Motivation isn’t something you can give to someone. Read more…
I’ve been asked a number times in my life–by strangers, friends, doctors, therapists–how I got cerebral palsy. In my case, as is true for most people, we don’t know. I do know that I was born 56 days premature in 1975, and that being premature is a risk factor for cerebral palsy. I also know that I has jaundice after I was born, which I’ve read can also, in extreme cases, cause brain damage. But other than those facts, we don’t know. Some people are born premature and go on to have few medical problems, or none at all–like my older brother. When asked by friends about my CP, I used to joke : “I just lost the crap shoot.” And for a long time, I felt that way. I tried to feel blessed and lucky, especially when I read stories in my mom’s Reader’s Digest or Woman’s Day about premature babies, even in the 1980s and 1990s, who didn’t make it. But truthfully, I didn’t feel very lucky–and there are some days I still don’t. I’m in a club–with about 800,000 other people in the U.S.–that I never asked to belong to.
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After a completely unintentional, inexplicable, snow and inertia-induced hiatus, I’m back. The good news is that, while I was on hiatus from blogging, I was not on hiatus from the fitness quest. During the Snowmageddon/Snoverkill debacle that gripped the District this month, I was, in fact, particularly stalwart and vigilant about my workouts (read here: bored and climbing up the walls of my apartment). I was in full-on preparation mode for my second round of Botox injections, so I wasn’t about to be deterred by a little–or even a lot–of snow.
Over the last couple of weeks, I also trekked out to Baltimore to see the osteopath, who rearranged my back and abdomen. While I was there, we also took some strength and range of motion measurements in preparation for the next round of shots. These measurements help the PTs and neurologist to determine where the Botox would be most beneficial, and can give a good indication of how my gait will be affected. The point of the Botox is to improve gait mechanics–and pain–so the pros choose carefully where the drugs should be applied. If a particular muscle group is too weak, then regardless of spasticity, they are hesitant to hit that muscle group. This is basically because, if you’re already an ambulator (a fancy way of saying that you can walk), they want to make sure you stay that way. This is fundamentally why the group opted only to inject my gastrocs and soleus (solei?) in the first round–because they were unsure of the net affect of more extensive shots. These, however, were folks who didn’t know me well and under-estimated both my strength and determination.
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