Monday, August 18, 2008

A Patient Patient?

The answers to last Monday's quiz are posted over at Donimo's excellent blog, Chronic Holiday. Go visit!

In the children's book The Little Engine That Could, which was my sister's favorite, only the little engine is willing to try to pull the heavy load up the mountain, willing himself up it. He thinks he can and therefore does. But what if he thought he could pull the train up the mountain but overestimated himself and had a terrible breakdown and could not be restored to his original state? Would it have been worth it after all, Little Engine?

What if that Little Engine broke an axle and lost a wheel and derailed, spilling dangerous chemicals into a local neighborhood, creating an "airborne toxic event" and necessitating an emergency evacuation like in Don DeLillo's White Noise? Would we be praising that Little Engine then, people? Or what if the Little Engine knew he could but that he'd be incapacitated the next week? Would all the other Little Engines pull out the medical advice? I never liked that book, Sam I Am. I did like Green Eggs and Ham.

I have to say my favorite children's book was The Little Red Caboose, which always came last. Though I guess right now it would have to be the big caboose. Now that I think of it, other favorites were The Wait for Me Kitten and Chicken Little. I got kind of caught up with the little drama queens. Though unrelated, I also liked the Where's the Baby? book in which a little girl looks everywhere for the baby, which turns out to be herself. She's the baby. That darn book fooled me every time. I'd have my mother read it over and over. Where's the baby? Ooohhh. Where's the baby? Ooohhh. Some foreshadowing seemed to be missing--why wouldn't we know she's the baby from the beginning of the book? I'd have her read it over, trying to see how it would work. My sister liked The Pokey Little Puppy.

How much does being a patient make you The Little Red Caboose? How much time do you spend being a patient? For me, for much of the past year, I spent an average of 10 hours a week away from my work and family in doctors' appointments, radiology, lab, physical therapy, procedures plus recovery time, and the commute time to these appointments. For the first time this past year I had to choose among and even turn down modalities that work. For the first time last year I wondered how I could get my work done. Sometimes I couldn't. Adding ten hours a week to a busy schedule is a lot for anyone, not to mention the additional pain or illness that created the need for the visit! Sometimes I still "think I can" and keep pushing on, at other times I unquestionably can't.

Lest I sound like I have Munchausen's (I really don't like medical attention, I'd really rather be left alone), that's not that much time during the diagnostic process. It's two PT appointments a week rather than the three recommended, plus an MRI or a follow-up for the MRI. It's the nerve testing one week, follow up with the rheumatologist the next. Or it's the PT plus a consultation with one of a couple of specialists for related problems, with the radiology or lab scheduled the next week since you have to work sometime. Or it's one of a couple of procedures under anesthesia plus recovery time that week and the next, no PT that week. Or it's your regular visits to the dentist, eye doctor, or regular doctor, carefully spaced out. Sometimes you tell the doctors you can't deal with appointments for another month or two and that you have to drop out of PT and keep it up at home, or that you can't do the recommended procedures now because you need a break. You hope that they don't drop you as a patient. You prioritize, let the smaller issues go, new ones crop up. You try to clear your schedule only to see it fill up again.

Being a patient really can be a full-time and expensive "job." There's extensive insurance paperwork for claims the insurance company still won't pay after you provide the documentation, the extensive time required to find, research, and shop for, and purchase medical equipment and find or purchase adaptive transportation. Often there are waiting lists to be seen by DME people. Realistically, sometimes you have to take shortcuts, postpone procedures, space out your appointments, cancel out with family to make room for these changes. Something's got to give (and it's not going to be my mind, baby!).

Pain diminishes my ability to get things done, even reading or sewing. I become unable to watch television. I plod on very slowly, trying to get things done, trying, trying. I think I can, I think I can. But at what cost? Sometimes I can't. Last week I couldn't. I had a flare of spondylitis pain and could not sit up more than a few hours at a time without excruciating pain. I couldn't endure an eight hour required training meeting last week. There was no way I could have sat up for that long. I was tired of fighting, tired of struggling, tired of feeling I didn't have enough time for my kids as I struggled all day to get small amounts of work done. So I quit.

After less pain this weekend, I began to second guess myself about this decision. I liked doing that work, loved it really. The pain kicked in again tonight and I realized how difficult it would be, though, nearly physically impossible at times, really. I make it to the top of the mountain, but it takes the life out of me. I'm sure when the pain level goes down again, I'll be back to wondering why I made such a decision. I get my work done and I do well at it, but it's increasingly physically difficult to go to work or to work long enough hours, especially with the medical appointments. Especially since I need to spend more time with family, spending hours out of the house with them. My children don't need to be trapped in because I've had to use my hours out for the day for work or a medical appointment. My husband takes them out, but he can't do it all. I am not doing well at explaining this right now because of pain.

Today I remembered in the children's story it's the tortoise who finishes the race first, not the hare. The one who keeps plodding on. I used to be the hare. I've looked at my old calendars, through my paperwork that evidences how much I could do. Now I try to keep going. There's probably other work that I could do, can do, more of it from home. We'll see.


yanub said...

What you describe, the life of being a patient, is precisely why I have chosen to be a bad one. I always resent the hell out of it when I really have no choice but to play the good patient. I don't know where you find the patience to be a patient 10 hours a week! I am in awe.

I love your take on the Little Engine that Could. Did you really think about that as a child? If so, again, I am in awe.

FridaWrites said...

I probably should have been a bad patient earlier, especially on the PT end: spend one or two appointments teaching me the exercises, I'll do them at home. I am reveling in the lack of appts. right now.

Well, I didn't consciously think that about the Little Engine when I was small, but I resented the book for some reasons and couldn't figure it out. Maybe because I did recognize on some level that optimism doesn't allow me to do everything and I did have limitations.

Wheelchair Dancer said...

hang in...

these things have a way of working themselves out ...

And never second guess yourself.

FridaWrites said...

Thank you for the support--I think you're right, that things will work themselves out, and there may be new and lovely opportunities on the horizon that I'd not otherwise have the opportunity to explore. Gut instincts are good things, and I went with that; logic mind still wants to argue. With the new trusty scooter (can't wait!), I'll enjoy being out in the world more than I do.

Liz said...

OMG. that's where i was last fall. I had to leave my job...

I hope your pain improves. It gets so hard to remember life without severe pain.

I'm glad you quit...

I am still mostly working lying down. They seem not to mind at work, too much, that I sprawl out on the couch in our meeting area and work from flat on my back. Better than though, just staying home and working from bed.

But, my god, the days spent just lying in bed, looking at the clock and thinking, I can do this for 5 more minutes. And then doing it again. It is a hard way to live.

FridaWrites said...

At your work, do you think they'd be willing to invest in one of the Ekornes/stressless recliners? With a good laptop stand, that could help you out some too. There is a job I very much wish I had applied for this spring, but interviews would have been immediately postsurgery. I really think I could have done (could do) it with accommodation. It is nice to get out, meet with other people, have some adult conversation.

It does get difficult to remember life without pain, but it also gets difficult for me to remember pain as soon as it goes away, making me particularly hard on myself.