I know everyone thinks their kids are exceptional. And they are, each in their own way. But most people, by the grace of whoever they're praying to or the kindly whims of fate never have the opportunity to find out how extraordinary their children can be in extraordinary circumstances. Perhaps it is one of my beautiful compensations for this mess I'm in that I have gotten to see this amazing strength and selflessness in my children, with the bittersweet twist of knowing they bear all this extra burden solely because of me.
What's a typical Saturday morning with kids at your household like? Do the energetic little ones roust you by surprise leaping into your bed, or with the sounds of their first squabbles of the day? Do they watch cartoons while you make breakfast and then disappear into their electronic devices for awhile? That would be pretty normal, I would think. Today was a pretty typical Saturday morning at our house.
My children accidentally woke me up with their quiet shushing of each other on their way down the stairs. Knowing they probably want breakfast but I have to go pee, I give my son the usual choice of hanging out in his room or in the basement, so I can have some kind of privacy in the living room where my bed and commode are located. He chose the basement, and tried to put away the folding chair he'd left out the night before in a moment of "oh yeah" responsibility, but I let him know not to worry about it because I really had to go. When I was done I called his name softly a few times so he'd come back up from the basement. I needed a drink of water and I didn't want to wake up his dad yet, knowing how exhausted he probably was from getting woken up several times a night the past few days to help me with my feverish stomach illness. My son came right away when he heard me, and cheerfully emptied out my "stale" water from overnight and filled my cup with ice and fresh water. Then he gently marshalled his sisters into the kitchen and started taking their cereal orders. Oh yeah, he fixes breakfast, and for his sisters first.
While he's pouring cereal, I tell his sisters that I'm almost better from my many days of bad fevers and soon I'll be able to give them hugs and kisses without germs again. They cheer, and clap, and chant "Hugs and kisses! Hugs and kisses!" and decide that when I'm all better we will have a hugs and kisses party. They eat, and it's nice and quiet in the house. I'm still in that half-asleep phase of waking up. It's quiet because the TV is not on. We don't let them watch it before lunch. No computers or video games before lunch either.
After breakfast they all take their dishes into the kitchen, and my precious son pauses before the basement door. "Do you need anything else before I go downstairs?" The simple question tugs my heart. So good. I let him know that I'm good for now, to go play. "Well if you need anything, call me to come up here!" This one breaks me, and I struggle not to put on unnecessary waterworks in front of him. "Okay buddy." At the last minute he remembers to grab the book he was reading before breakfast and take it back to the basement with him.
I've written a lot about what this past year has done to me. What must it have been like for them? They went months with only seeing their mother once or twice a week. When they did see me, I was in a hospital looking like I'd never make it home. My already pale skin had turned sickly, half my hair fell out, I was a mess. And I'm sure it helped that I cried a lot, because it was so hard to see them so rarely and say goodbye again every time. I've had to teach my daughters that getting a broken back is not the normal course to adulthood and ask them repeatedly to stop worrying when it will happen to them because it won't. I've been home long enough now that they no longer worry whether I'll come back each time I leave for an appointment or therapy, but they used to get sad every time I left, and ask how long I'd be gone this time, and I had to promise each time that I'd be home by dinner.
Yet each of them has this strength inside, they just ride along with the punches and do their thing. Their beautiful, helpful thing. Of course they fight and bicker and drive me crazy sometimes. They spend some time in Time Out now and then, and sometimes get privileges like afternoon video games taken away for this or that. But most of the time it's Little Bit with the singing of the made-up songs, or Bandit with her uncannily accurate singing of popular songs, and the two of them playing make-believe together, with Bubby reading or playing with legos, and our too-small house is stuffed with the rhythmic peace of those three amazing kids. Of course I'm getting better, and never give up or lose hope. What else could I do with such shining examples of humanity around me?
Saturday, September 8, 2012
Wednesday, September 5, 2012
The subject of pain
Actually, the subjectivity of pain. It's very tricky to talk about pain, because we all experience it so differently. Doctors and hospitals always want you to rate your pain, and this practice is always funny to me. There seem to be three kinds of reactions in people when you present them with a standard-issue medical pain scale: 1) People who just want good pain meds and rate their pain as high as possible to acquire them; 2) people who have no idea how to evaluate their pain and guess randomly in the middle, typically between 4 and 6; and 3) stoic types who have either had serious pain in the past that forever influences how they rate other pain or else don't want to seem complainy and so rate their pain low.
I love it when people - even women who have experienced childbirth! - rate their pain at 10 even though they are sitting calmly, perhaps reading a book or watching television, periodically smiling or laughing when something humorous happens, and just in general appear to not be screaming or passing out. I'm sorry folks, but you are not experiencing level 10 pain. Even the ones who have experienced childbirth seem to have forgotten that they were yelling and crying at the time. If you're not yelling and crying now, hmmm, maybe this isn't actually as bad as childbirth, eh? I had pancreatitis a couple of years ago. That's an illness where something makes your pancreas really mad, so mad that it tries to kill you. From the inside. Seriously. The pain from pancreatitis, in addition to making me vomit and wonder if my recent surgery incisions were ripping open on the inside, perhaps causing me to bleed internally, also caused me to feel like I was becoming detached from my body, and floating away, as though the pain were literally killing me. That experience has forever defined pain levels for me, and I call that level 9. That's right, 9, not 10. Because I figure that level 10 really would have killed me. And because I can imagine things that would hurt worse. By definition, 10 really needs to be the worst possible pain you can imagine, right? I think being on fire, perhaps getting shot, certain types of complex fractures, and maybe childbirth, among other things, could all be worse than what I felt with pancreatitis. Not just any fracture though, because I've broken my arm before, and that didn't hurt anywhere close to as bad.
So when I have pain that's constantly on my mind, inhibits my movements and forces me to seek relief with medications, I call that from 5-7, depending on how restrictive it is, whether I cry, and whether the medications relieve it much. If I have pain that's tolerable even though I don't like it, and I can get by mostly okay without medications, that's typically a 2-4. Anything less than a 2 means it's either not constant, or hurts so little that I can often forget about it or ignore it.
But that's how I rate pain. The problem for medical personnel is that the next person won't rate pain the same way I do. There have been some rather funny attempts to make better pain scales. I enjoyed this one especially, along with its helpful drawings. I think perhaps a pain scale that uses analogies we've all experienced or can imagine would be more helpful for medical personnel than the one they're using now. If I were to give a go at creating a new pain scale, it would be something like this:
0 = Oooh, I found a quarter. Happy day!
1 = Oh darn, I have a hangnail.
2 = This headache just won't quit. I need some over-the-counter sized doses of ibuprofen, acetominophen, or naproxen sodium.
3 = I fell down and bloodied both my knees. The scrapes sting constantly and I'd really like to find something to get my mind off it.
4 = This is a pretty serious sunburn. Blisters form, and everything is so tender that I'm careful how I move and would rather not be touched.
5 = A broken arm or sprained ankle. Definitely would appreciate some hydrocodone, or maybe the big 800mg ibuprofen pills, and body movements are visibly altered by the pain.
6 = I can't think of anything else but this pain. I am willing to beg for pain relief.
7 = I can hardly speak because of this pain. I just gesture wildly for you to bring me morphine. I may also be nauseated by the pain.
8 = Having regained the ability to speak, I now scream for morphine.
9 = A medically induced coma is looking like a really good option here. I will do anything to escape from this pain, including having an out-of-body experience.
10 = Just let me go toward the light...
Perhaps this will help you the next time you're sitting in your doctor's office being asked to rate your pain. Maybe don't go straight for the 10, eh? Try on a 6 for a change, or maybe even a 5! And of course, the most important part of any pain scale is for it to start a dialogue between you and your medical team. Give as much detail about the pain as you can, how it limits your activities, whether you feel sick or like your heart is racing, can you breathe through the pain, has anything worked to relieve it, etc. The more they know, the better they will be at helping you with your pain.
One more thing: not everyone will reach these pain scale levels at the same level of pain. It's important to be honest about your pain, and don't assume you should be able to "handle" as much pain as someone else. When you reach your personal level 6, and you're ready to beg for medicine, you'll know. It's okay if you reach your 6 earlier or later than the next guy. It's supposed to be customized to what you need.
I love it when people - even women who have experienced childbirth! - rate their pain at 10 even though they are sitting calmly, perhaps reading a book or watching television, periodically smiling or laughing when something humorous happens, and just in general appear to not be screaming or passing out. I'm sorry folks, but you are not experiencing level 10 pain. Even the ones who have experienced childbirth seem to have forgotten that they were yelling and crying at the time. If you're not yelling and crying now, hmmm, maybe this isn't actually as bad as childbirth, eh? I had pancreatitis a couple of years ago. That's an illness where something makes your pancreas really mad, so mad that it tries to kill you. From the inside. Seriously. The pain from pancreatitis, in addition to making me vomit and wonder if my recent surgery incisions were ripping open on the inside, perhaps causing me to bleed internally, also caused me to feel like I was becoming detached from my body, and floating away, as though the pain were literally killing me. That experience has forever defined pain levels for me, and I call that level 9. That's right, 9, not 10. Because I figure that level 10 really would have killed me. And because I can imagine things that would hurt worse. By definition, 10 really needs to be the worst possible pain you can imagine, right? I think being on fire, perhaps getting shot, certain types of complex fractures, and maybe childbirth, among other things, could all be worse than what I felt with pancreatitis. Not just any fracture though, because I've broken my arm before, and that didn't hurt anywhere close to as bad.
So when I have pain that's constantly on my mind, inhibits my movements and forces me to seek relief with medications, I call that from 5-7, depending on how restrictive it is, whether I cry, and whether the medications relieve it much. If I have pain that's tolerable even though I don't like it, and I can get by mostly okay without medications, that's typically a 2-4. Anything less than a 2 means it's either not constant, or hurts so little that I can often forget about it or ignore it.
But that's how I rate pain. The problem for medical personnel is that the next person won't rate pain the same way I do. There have been some rather funny attempts to make better pain scales. I enjoyed this one especially, along with its helpful drawings. I think perhaps a pain scale that uses analogies we've all experienced or can imagine would be more helpful for medical personnel than the one they're using now. If I were to give a go at creating a new pain scale, it would be something like this:
0 = Oooh, I found a quarter. Happy day!
1 = Oh darn, I have a hangnail.
2 = This headache just won't quit. I need some over-the-counter sized doses of ibuprofen, acetominophen, or naproxen sodium.
3 = I fell down and bloodied both my knees. The scrapes sting constantly and I'd really like to find something to get my mind off it.
4 = This is a pretty serious sunburn. Blisters form, and everything is so tender that I'm careful how I move and would rather not be touched.
5 = A broken arm or sprained ankle. Definitely would appreciate some hydrocodone, or maybe the big 800mg ibuprofen pills, and body movements are visibly altered by the pain.
6 = I can't think of anything else but this pain. I am willing to beg for pain relief.
7 = I can hardly speak because of this pain. I just gesture wildly for you to bring me morphine. I may also be nauseated by the pain.
8 = Having regained the ability to speak, I now scream for morphine.
9 = A medically induced coma is looking like a really good option here. I will do anything to escape from this pain, including having an out-of-body experience.
10 = Just let me go toward the light...
Perhaps this will help you the next time you're sitting in your doctor's office being asked to rate your pain. Maybe don't go straight for the 10, eh? Try on a 6 for a change, or maybe even a 5! And of course, the most important part of any pain scale is for it to start a dialogue between you and your medical team. Give as much detail about the pain as you can, how it limits your activities, whether you feel sick or like your heart is racing, can you breathe through the pain, has anything worked to relieve it, etc. The more they know, the better they will be at helping you with your pain.
One more thing: not everyone will reach these pain scale levels at the same level of pain. It's important to be honest about your pain, and don't assume you should be able to "handle" as much pain as someone else. When you reach your personal level 6, and you're ready to beg for medicine, you'll know. It's okay if you reach your 6 earlier or later than the next guy. It's supposed to be customized to what you need.
Saturday, September 1, 2012
Aches and Gains
This week was extremely satisfying in physical therapy, but the trade-off to that appears to be a lot of soreness and fatigue. On Tuesday, I greatly surpassed my previous cane-walking distance record by toodling along for 100ft without resting, then following with another 75ft walk. I also continued working on my standing balance by standing for 3 minutes at a time doing bouncy ball exercises with the trampoline.
I used to always get lower back aches when standing for long periods at the copying machine or in the kitchen. "Long periods" in those days meant upwards of 30 minutes to an hour. These days though, it would seem that 3 minutes constitutes a long period, and after my two days of therapy for the week, I did enough standing to make my lower back ache terribly for the past two days. Enough to take hydrocodone for it.
Standing and taking enough steps to get to and from my commode is pretty challenging with this much lower back pain. I think it's pretty clear I over-exerted what my body was able to handle this week, but that also makes it pretty clear that I need to do more trunk strengthening exercises so that I can stand upright and use abdominal muscles to hold my trunk straight without straining my lower back. So, when my back has recovered enough to not need pain meds anymore, I'll be gently increasing my in-bed exercises that focus on abdominal, hip, and lower back muscles.
I used to always get lower back aches when standing for long periods at the copying machine or in the kitchen. "Long periods" in those days meant upwards of 30 minutes to an hour. These days though, it would seem that 3 minutes constitutes a long period, and after my two days of therapy for the week, I did enough standing to make my lower back ache terribly for the past two days. Enough to take hydrocodone for it.
Standing and taking enough steps to get to and from my commode is pretty challenging with this much lower back pain. I think it's pretty clear I over-exerted what my body was able to handle this week, but that also makes it pretty clear that I need to do more trunk strengthening exercises so that I can stand upright and use abdominal muscles to hold my trunk straight without straining my lower back. So, when my back has recovered enough to not need pain meds anymore, I'll be gently increasing my in-bed exercises that focus on abdominal, hip, and lower back muscles.
Saturday, August 25, 2012
Anniversaries
For just about as long as I can remember, August has been a month for anniversaries. Many summers ago in a cute Lake Tahoe chapel, carrying a bouquet of blue silk roses I bought her, my mom walked down the aisle to marry the man I'd already taken to calling "dad" and make everything all nice and official. I immediately began using his last name, proudly, although it would be years later that I made the change legally.
One hot August, while my belly was full and round with my first child, my sister passed away from cancer. I had the great fortune to have seen her, earlier in my pregnancy, although I had not realized then that it would be the last time. I certainly never thought that eight years later I'd be embroiled in my own fight with cancer.
A year ago in August, I had my first spine surgery. And a year ago in August, yesterday and today were the first days I started feeling wobbly, off-balance, and a little bit feeble while walking, and thought I was having a side effect problem from taking Valium. A year ago tomorrow would be the last day I walked without an assistive device. By the end of that day, I would be unable to walk at all, and my rehab/physical therapy journey would begin.
Friday, August 17, 2012
31
Exciting things have been happening in physical therapy lately. Taking the muscle relaxers once a day has really helped ease the problems I was having with popping and crunching in my fusion area, allowing me to make better progress in my workouts.
In our continuing efforts to improve the quality of my walking, ensuring I don't lean so heavily on my arms, we made the transition from standing and walking with my walker to standing and eventually walking with a pair of four-legged canes. The canes force me to keep all my weight in my legs, since they are not designed for support, but only to aid in balance. Initially, with so much more of the work being done by my legs, my walking distance was very very short, about 8 feet on the first try. But with additional practice to strengthen the muscles that keep my knees from buckling, I've been able to slowly extend that distance. Now, after about two weeks of working with the canes, I was able to walk 31 feet without resting.
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