Forgetting

Our au pair, Silvia, was groaning and walking around gingerly yesterday. Her every muscle was hurting because she started a new workout regimen two days ago at the local college gym. She said, "I forgot I had muscles in some places, and now I remember, because they hurt." A few times, she said, "I feel like an old woman." "I am dead." "I have no energy at all." She said all this while looking good and fit and chasing Abby around, and speaking in an endearing Arnold Schwarzenegger accent. In the end, she added, "But it's okay, because it feels good to exercise."

I refrained from saying, "I know exactly what you mean, except I didn't do anything to feel like this, and I don't have the satisfying counterpoint of knowing that my muscles hurt for a good reason."

Which leads me to the medical update you all haven't had in a while.

I am feeling hale and hearty. Well, that's a bit much. But I am feeling fairly fine, she said, alliteratively. Some days, I feel quite strong and stable and the Arthritis-Strength Tylenol works, and it's a good day. Other days (possibly the days after those other days, when maybe I overdo it a bit), I have "no energy," "feel like an old woman," "am dead," regularly careen into walls and cabinets and things, and remember my muscles because they hurt.

I have to elaborate a bit on this point of becoming acquainted with muscles. It is not an exaggeration to say that I'm learning about anatomy through pain. There are these muscles called pectoralis minor that sort of go under what we think of as your pectoral muscles -- these muscles connect your ribs to your scapula (shoulder blades), but in the front. They're the muscles that help you hunch your shoulders, should you care to do so. If you lie on your back and press just under your collarbone next to the hollow where your pectoral muscle stops and your shoulder begins, that's the muscle. Well, when these are in spasm for 2 years, it really hurts.

There are also actually muscles between one's ribs, called intercostal muscles. Sounds like a vacation -- down the intercostal highway. Oddly enough, these can spasm such that one's rib cage feels cast in concrete. Now, this doesn't so much hurt any more (which might be a bit worrying, actually). It feels heavy, and solid, and stiff, but I am so used to the background noise of pain that it really doesn't bug me that much.

The other muscles I never really thought about much (as opposed to all the muscles I knew well and would have aches in, especially after working out -- I used to work out, once in a while at least; Sara can vouch for that) are the muscles that are found in the front of the neck. They are called the sternocleidomastoids. I only feel these when I actually rub them (at which point they hurt). These turn your head in different ways, and they probably needed to be cut, or at least moved out of the way, when I had my surgery.

So, let's do a 'day in the life.' When I was a trial lawyer, there were "day in the life" videos, referring to a plaintiff's lawyer having a dramatic video produced showing how miserable the plaintiff's life had become since she took the drug/used the product/drove the car off the road, etc. They are really hard to watch (because if they weren't, the plaintiff wouldn't seek to show them to the jury) and sometimes judges exclude them on the grounds that they are more inflammatory than instructive. My 'day in the life' vid would be no big whoop.

I still use my cane most of the time when I'm outside the house, unless I know there will be plenty of things to grab onto if I start to topple over. I need to lift my legs (especially my right leg) with my hands if I want to put on my pants or cross my legs. To get up off the floor, I need to get on hands and knees first and then carefully stand up, using my hands because my right leg doesn't work. I make more typos than I like with my numb left hand. When I get tired, my vision goes double and I have to consciously focus (on the crochet/scissors/DS game/magazine/hockey game). I spend all day turning my head like some kind of demented bobblehead, just instinctively stretching the muscles and keeping it loose. I can pick Abby up and carry her around, but not as often as she'd like me to (which would probably be true of most people, because she would like to be carried around all day). My right leg drags a bit, which means I have to be careful not to stumble. And it is rough carrying Abby down the stairs, or wrestling with her on the changing table (she does NOT appreciate having her diaper changed or clothes put on). In general, maybe I feel like I'm living in a body that's ten years older than it really is, with a limp.

Dr. Restak, my second-opinion neurologist, wants to repeat the lumbar puncture (spinal tap). He says that the muscle strength is actually quite good (if this is good, I must have been a superhero before), but the nerve/muscle connection doesn't seem right (duh) and I have hugely hyperactive reflexes and other weirdness. When I'm sitting up on the examination table and he taps my knee with that little rubber hammer they use, my leg flies up so violently that I almost throw myself off the table. This is funny, actually, but also a little unnerving. So, he would like a repeat spinal tap. He says the fact that the first one was done before my surgery might have affected the results because of something I didn't understand, having to do with the impact on the spinal cord of my mushed-up disks. Now that the surgery is over and the cord has healed somewhat, there is a chance the results would be different, and the spinal tap seems like the only remaining way to triple-check that I most likely don't have MS. He still has an "inkling", he says, that I might have some kind of "sneaky" MS that just isn't presenting the way it usually does.

Children, I was just about to give up on the whole thing. Why keep going to neurologists just to have them make me look at their fingers and poke me with pins and tap my knee with hammers, and tell me that I seem a little better but they still have no idea what's going on? I told my husband that's how I felt, I told Dr. Restak, and I told a couple of other doctors, and they all said the same thing -- it's not yet time to stop looking for a diagnosis. If it is MS, I should be treated for it, and we haven't quite -- almost, but not quite -- done absolutely everything possible to be sure it isn't MS. So, I'll get on Maragakis's schedule (haven't seen him in a while, anyway) and see if he wants to stick a needle in my spine.

Meanwhile, I need to make a visit to Dr. Witham, the neurosurgeon, too. Last time we looked at an x-ray of my neck, he said the next two disks up, C3-4 and 4-5, were looking pretty crumbly. I want to keep on this, because I would rather have surgery before I wake up one morning on the brink of paralysis -- savvy?

As for rehab, well, really Abby is my only rehab. I stretch once in a while, and I certainly walk a lot more than I used to -- I even discovered my maximum walking speed, thanks to our treadmill: it is .9 miles per hour. Whoo! But it's impossible to imagine going to the frigid pool and putting on a swimsuit and walking around in this weather. I've been kicked out of physical therapy, and I can't lift weights. So really, it's up to me to do simple exercises which are really boring. I have been toying with the idea of yoga. Problem is, when you want to do restorative or very gentle yoga, it takes 25 props and elaborate staging of pillows and chairs and everything else. By the time I pile up all the accoutrements and position myself in just the perfect way to lie down, I'm exhausted. The answer? Not sure.

Here's the thing about giving up on the doctors. I have adjusted. At some deep level, I got tired of being afraid, of being angry, of being resentful. So I shifted in my expectations, and I decided 'fine, this is my life. i use a cane, i park in the handicapped spots, i can't move my right leg, and i have some level of pain all the time. i can do this, so it's fine.' And I moved on. Or rather, I wanted to move on. When I go to the neurologists, however, it all comes flooding back. The fear, the anger, and the resentment gain new life and I even have flashbacks to the hospital, the recuperation, the tears, the terror, the total mystery of what was happening to me -- would I die? Would I be paralyzed? Who wants to think about any of that? Not me. Fighting to achieve a diagnosis seemed much less important to me than avoiding all of that negative garbage. I asked over and over my remaining question, "Is this going to suddenly happen to me again?" and all of them said, "I don't see any reason why it will." Good enough for me. But it isn't. I need to know whether this is MS. If it is, I need medication so I can make it less likely that it will happen again, or get worse. Which, frankly, sucks. I'd much rather carry on as is and forget about the whole thing.