Irascible Ink

I’m still in a funk, my back still hurts. I’m still really angry about it. But at least I’ve stopped crying in frustration each time I think about it. So today, I’m determined to be a little less pissed off—or at least to spend less time thinking about how pissed off I am.

Last week the Washington Post ran a stellar series on traumatic brain injuries (TBIs) among soldiers returning from Iraq and Afghanistan: Coming Home a Different Person.  You should check it out, if you missed it. There’s also a fascinating description of how damage to different parts of the brain affects not only mobility and other physical functions, but also mood regulation, decision-making, etc.  I don’t know, there’s something about understanding the exact part of my brain that’s damaged that I find intriguing—in a “know thy enemy” kind of way. The graphics here are really cool.

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As a big proponent of healthcare reform in the United States, you’d think I would have been posting madly over the last few weeks, crying victory and feeling vindicated and cheerful. But it’s been hard to be excited about the demise of the dreaded pre-exisiting condition exclusion when the news is full of people, fighting mad, litigious, and screaming for repeal. It’s hard to feel good when so many people in this country seem so incredibly angry. It’s also hard not to feel personally offended when you read comments by folks bemoaning the fact that “all those sick people” will be allowed to enter into the market and drive up their premiums.

First off, I’ll say that I have no illusions that this new law is perfect, or that it’s the panacea for what ails the healthcare system in this country. I also understand that in the United States we chafe at the government interfering in our personal lives, and that to require that all people carry health insurance smacks, to a vocal segment of the population, of government over-stepping its bounds. I get that. I really do. I also get that the United States is a capitalist country, with a strong individualist bent–people work hard for their money and they feel entitled to keep it. I hear you, you don’t want to pay more taxes or higher premiums. Let’s be honest, none of us do—right, left, center. The hardest pill to swallow is the idea that there is a large segment of the population appears to have no qualms about the policies health insurance companies have towards pre-exisiting conditions. So long as the government isn’t telling them what to do, they don’t seem to mind that there are people suffering and dying because of discriminatory practices or an inability to afford medical care.

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I’ve been AWOL from this blog for a few days, adjusting to a new, more hardcore workout regime. It involves some interval training cardio, spliced between weight circuits, and quite frankly, has been kicking my butt.In good news though, according to PTE, I’ve got two degrees of dorsiflexion in my left ankle–although my right is staying stubbornly at zero.

Also, I’ve been grappling with writing this post about health care reform. It’s an issue I’m passionate about, and one that I wanted to be sure to address rationally and truthfully, without ranting like a lunatic. It’s difficult though, with many newspapers shouting that yesterday’s Massachusetts election signals the death knell for health care reform for this generation. For most people health care is a political issue , but for me, and many other people with chronic illnesses and disabilities, it’s a personal issue that wakes me up in the middle of the night in a cold sweat. Without reform, there is a chance that some day the Botox treatments that have so recently given me a new lease on life could some day become unattainable.

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Below you’ll find a cool article about a very small study on the use of customized virtual reality “games” to improve hand function in teenagers with hemiplegic cerebral palsy. I think it’s awesome on two fronts–a.) it’s an innovative application of a technology that teenagers would be self- motivated to use; and b.) it studies teenagers as opposed to young children.

Virtual Reality Tele-rehab Improves Hand Function: Playing Games For Real Recovery

The article also mentions that the use of remotely controlled virtual reality games offers a new way for patients to receive low-cost, effective treatment at home. The idea being that as the patient’s  hand/arm motor function improves, a physical therapist could monitor their progress and increase the duration/level of difficulty. The remote monitoring system, while of course not a replacement for manual physical therapy, would decrease the stress, hassle and cost of traveling to a clinic regularly for rehab .

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So I talked a little bit about being responsible for your medical care and how–in my opinion–to be a good patient. This strategy, however, only works if you can find a doctor. It’s a process that, in my experience, ranks at the top of the frustration scale–way above the IRS, the DMV, and airport security. You have to find one that: a.) is taking new patients; b.) accepts your insurance; and, c.) knows something about your condition, preferably a lot of something. Oh, and depending on your insurance company, you need to convince someone in an office in Omaha or Hartford that yes, you really need to go to a specialist in the first place. It’s enough to make you want to bust out some duct tape and a tree branch and set your own broken leg!

In the process of trying to find appropriate and informed medical care for my cerebral palsy, I’ve been shocked by how few medical professionals there are around who know enough about my condition to help me. (I’m no slouch as a researcher, either. I’m a trained librarian!) Equally disconcerting has been the difficulty I’ve had finding specialists with experience with CP willing to see adults. Let me be really clear about the fact that I think the time, attention, and money directed at helping children with CP to lead fulfilling lives is extremely worthwhile. Certainly, I am where I am today because I had a great team who devoted their energy and expertise to my care (not the least of whom was my mother–thanks Mom!). But I’ve discovered that there is a huge continuity gap–more like a chasm–for folks with CP as they age out of the pediatric care system.

If you do some searching, you’ll find that most cerebral palsy clinics and research centers are located in, or closely affiliated with children’s hospitals. (This is, of course, after you scroll through 985 search results that will direct you to an attorney who will help you sue someone for your cerebral palsy.) There’s a good reason why most resources, financial and otherwise, are directed at the treatment of children: early intervention is key to minimizing the negative effects of spasticity on growing bones and joints. It makes perfect sense. Pure utilitarianism–the greatest good for the greatest number. Also, kids are cute, they look good on posters. They inspire people to open their wallets, which is why there are poster children, not poster fogies.

What doesn’t make sense though is the dearth of resources available to you once you hit 18. If you’re lucky, your pediatric orthopedist or neurologist will continue to see you. But if you’re like me, and no longer live in or near your hometown, or your specialist isn’t in your insurance network, you’ve got a problem. Over the years I have called a number of clinics and doctors’ offices and been told point-blank that they don’t take adult patients. I’m a procrastinator, so usually I was making these calls when I was already injured and in pain. Very often I’ve been reduced to heaving sobs as I begged the receptionist to at least let me speak to a doctor, who might be able to tell me who to call. So, I guess part of my mission too is to ensure that, in the future, no one feel as alone and as invisible; that no other grown woman be reduced to blubbering in her office cubicle: “No one will help me. I’m in pain and no one cares because I’m not little and cute.” (Ok, so technically, I am still little, but cute is open to interpretation.)

When I have found specialists with the will and the knowledge to help me, I have often encountered a philosophical problem: by and large they are focused on mitigating risk and preparing patients like me for early, old age. When I sought treatment for a recurrent SI joint misalignment, my physiatrist was helpful but pessimistic. When I asked what could be done to solve the problem, which I am sure is a direct result of CP-related spasticity, she told me that I should just accept that I would deal with this problem for the rest of my life. She advised me to have a stability bar installed in my shower, and to be sure I sat down when I put my pants on, since I am approaching middle age and would begin to lose my balance more often. She scolded me for living in an apartment with stairs. Her treatment philosophy focused on risk avoidance, pain management and adapting to slow decline. I tried to be grateful that at least I had found someone who was familiar with CP in adults. But the whole thing just made me angry. Here I was, busting my butt at the gym for a decade, and she’s telling me that basically I really should spend some time picking out a cane? Giving up is not my style. Accepting pain and reduced mobility as the new status quo is not an acceptable action plan. So I  kept looking.

After I finally found a neurologist and went to see him for the first time, I sat in my Zip Car for 15 minutes and cried. Someone who is in a position to help me finally listened. Someone finally offered me a solution that didn’t mean giving up or accepting less than I am capable of. One of the proudest moments in my whole life, I think, was when my neurologist congratulated me and told me that I should be the poster child for the benefits of cerebral palsy and exercise. Me, a poster child, at 33! It’s just a figure of speech, of course, but it got me thinking that maybe I could do something. That maybe I should do something to draw attention to this issue. I’m a writer and I’m opinionated. I’m extremely passionate about exercise–especially for people with disabilities. So now I have this blog, and now you’re reading it.

Now I have a great team of medical professionals committed to helping me on my journey, but I never take for granted the fact that they’ll always be there. I could move or change jobs, so could they. They might decide that they’d like to stop fighting with my particular insurance company, and then be out-of-network. Then my choice will be between no treatment and paying out-of-pocket. So there’s always a little bit of fear, that it might all end tomorrow and I’ll be back to square one. It’s particularly scary now that I’m seeing such terrific results from the botox injections. But I’m hoping that by sharing my experiences I can encourage more people to seek, and more doctors to supply, the kind of care I was always looking for: something that’s more than palliative, something that allows patients to explore the utmost of their potential, whether they’re 6 or 60.

Ok, wow. That’s several very earnest, serious posts in a row. In fact, I think I’ve talked about crying in about three posts so far. Funny thing is, I’m not generally a serious person.  I’m the person who makes you laugh in the grocery store line. In good news, I’m three-for-three on workouts so far in 2010: steady-state cardio on Friday, 25-minute cardio warm-up and weights yesterday, and 30 minutes of interval training today. I’m on a roll. I promise tomorrow will be fluff day.

In this NPR piece, a Boston doctor discusses how an encounter with an ornery patient changed her relationship to her patients and the trajectory of her career.  As a result of her experience with a single patient, the doctor says she is no longer afraid: “to allow my patients to take me on their journey. Whatever expertise we have, the patient holds the wisdom of their life.”

Crusty Patient Helps Shape Doctor’s Career

This made me think of some lessons about being a good patient that it took me far too long to learn:

1. As a patient, be responsible for setting the tone and determining the course of your medical care;
2. Do your homework on physicians so you can choose wisely. Like the President picking a cabinet,  surround yourself with professionals who have the know-how.
3. Be willing to question and challenge your advisors, if a diagnosis or treatment suggestion seems off-base–no one knows your body like you do.

Fundamentally, you’re the one driving the bus. Get educated about your condition (or your child’s)  and the treatments available. Ask questions. If your doctor makes you feel uncomfortable or seems too harried to give you a cogent answer, find another one.

Over the years, I’ve often joked that I’m the worst medical patient in the world. I’m impatient, inquisitive, and over-educated, and I spend far too much quality time with Google. I read medical studies and pore over anatomical diagrams of the human leg before my appointments. I write down the names of the muscles and tendons I think might be the culprits. I send lengthy missives to my trainer asking about obscure body parts/ processes.

Maybe all this information gathering is an obsessive waste of time; but I feel more qualified to guide the journey if I’ve at least looked at a map.

Addendum: Don’t take my word for it, check out CNN’s tips for being an empowered patient:

Top Empowered Patient Tips for 2010

This morning I was ready. I was bundled up against the cold, a pair of black spandex shorts secreted under my jeans. My legs were limber from early morning stretching so that could show off my new moves for my doctor.  The great reveal: the follow-up appointment to my first round of Botox injections twelve days ago. Given the success I’ve had so far with my calf muscles, I was looking forward to another round of shots. They would, I hope, liberate my thighs, hips and lower back from the strangle-hold of spasticity. I was looking forward to sitting effortlessly cross-legged on the floor, to contorting myself into the lotus position, to kayaking in the spring. I was looking forward to being less knock-kneed, and to wearing shorts that don’t bunch up in the front when I walk.

Unfortunately, it wasn’t to be. At least not today. My doctor decided to exercise caution and wait for further treatments until early 2010. This wasn’t due to any adverse reaction to the drug, but rather concern that another round of injections, so soon after the first, might encourage my body to produce antibodies. These we don’t want, because they prevent the drug from working. (At least I think that’s what he was saying; I don’t speak Neurologist.)

I was disappointed, although I knew it was a distinct possibility that we’d have to delay. I felt like a little kid who finds socks and underwear under the Christmas tree. The doctor was doing his job, looking out for me, and looking at the big picture. But I was a little crushed. I was ready. I wore spandex shorts for the first time since 1989! It took all my willpower not to stamp my foot and say: “But Doc, you promised!”

On the train ride home I tried to console myself with the fact that a new date had been set, I just needed to be patient. It wasn’t really working for me. At all. I went through the rest of the day feeling like another roadblock had been thrown up in front of me, like I’d stumbled on the last hurdle. I was tempted to sit on the couch with a box of chocolates or some beer. I think what got me was the two+ month stretch of waiting, for time to pass and for the solution to land on my doorstep. It’s a helpless position to be in, waiting for something good to come to you. I’ve never been zen enough to make that work for me.

There’s nothing I can do about the delay, but that doesn’t mean I have to sit on my couch for two months. Instead of wallowing in self-pity, chocolate and beer,  I went to the gym. I knocked out 45 minutes on the eliptical–concentrating on maintaining my posture and pushing through with my heels. I lifted weights and focused on form and contracting the muscles I know are weak. My personal trainer extraordinaire (PTE) will be thrilled to know I did all the exercises I hate–including that hamstring one on the TRX.

And I felt better. I still feel better–because I have agency. I can use those two months to build muscle and strengthen my already liberated ankles. And if my doctor won’t give me the shots next time, I am pretty sure I’ll be strong enough to put him in a headlock by then.