It's been a hectic end to 2013, what with this whole kidney business threatening to keep me hospitalized in late December and almost ruin yet another special day with my neverending medical crises. Fortunately, I got out in time for Christmas, and also had New Year's at home.
Now we are kicking off 2014 with our game faces on. Monday is my pre-surgical consult with a urologist specializing in very large stones, followed later that day by my pre-surgical anesthesia consult, so that everything will be in order for whatever date they set my kidney stone removal to be. Wednesday brings routine Endocrinology check-ups for both hubby and me, and the week after that is my six month Oncology follow-up with those all important lab draws to check for non-specific tumor markers and other traces of potential problems in my blood. Next up we'll need to schedule the entire family's eye exams that we're more than a year late for, and then see about finally getting us all in to visit the dentist again, two things that were allowed to lapse in the face of more urgent issues and lack of time and energy to get them done.
People are always making lots of resolutions this time of year, usually about their health - eating right, exercising more, losing the magic number of pounds they think will make them happy inside their skin. After seeing the way my oversized body has weathered the shitstorm of problems thrown at it the past three years, I'm inclined to not make any resolutions about my size anymore. Clearly my shape is not going to change much, and if it continues to survive every hurdle it faces, this body suits me just fine.
Nope, my resolutions have less to do with body changes and more to do with horizons and possibilities. I would like to again be able to handle car travel and hotel stays, enabling much-needed trips to California to visit my hometown and family. I'd like to cautiously invest a little money in small improvements to this house, so that we can once again attempt to sell it and relocate to a single-story, handicap-friendly home. I'd like to see my family visit more of the fun and educational attractions our city has to offer, more often, even if outings with my big power chair are physically exhausting and tedious to plan. The memories are worth it.
I hope you set your sights on interesting horizons in 2014, and that the coming year brings your goals and dreams within reach. Never settle for less than your best, and always strive to surround yourself with people who uplift you, not tear you down. And may we all find ourselves healthy, satisfied, and still full of hope once again when this year is done.
Sunday, January 5, 2014
Tuesday, December 17, 2013
Heartthrob
I have a very contentious relationship with my heart. It likes to do weird, fluttery things once in a while, but never when I have someone listening to hear them. It likes to skip a beat sometimes, it seems to me, but never when I'm laying down connected to ECG sensors. It likes to go faster than necessary, periodically, leaving me wondering where the fire is.
When I developed a blood vessel tumor in my spine, my heart liked to beat nice and hard there, a throbbing reminder of the constant pain. This is your heartbeat. This is your heartbeat from inside the tumor that wants to cripple and kill you.
Lately, with bladder and kidney infections complicating an enormous 10mm kidney stone that nearly made my whole system septic, I've had some really terrible headaches. Headaches where my heartbeat pounds away in the center of my frontal cortex. Where every throbbing, eye-clenching, forehead-cradling beat screams an alarm in my soul. Thudding, drumbeat pain. Feeling my heartbeat from the inside of my body, this time from inside my brain, just like how I feel it from inside the tumor in my back.
Just
Like
The
Tumor
Now you begin to understand the terror in our eyes when these headaches hit and my husband and I look at each other, and do not say what is not allowed to be. I'm scared and cry, and he holds me, and knows my fear. I just want to get better. I just want to get past this freak show and move on. I just want to keep going.
The headaches seem to improve as the infections are treated with antibiotics. We hope they go away soon. Maybe then we won't worry.
Maybe.
When I developed a blood vessel tumor in my spine, my heart liked to beat nice and hard there, a throbbing reminder of the constant pain. This is your heartbeat. This is your heartbeat from inside the tumor that wants to cripple and kill you.
Lately, with bladder and kidney infections complicating an enormous 10mm kidney stone that nearly made my whole system septic, I've had some really terrible headaches. Headaches where my heartbeat pounds away in the center of my frontal cortex. Where every throbbing, eye-clenching, forehead-cradling beat screams an alarm in my soul. Thudding, drumbeat pain. Feeling my heartbeat from the inside of my body, this time from inside my brain, just like how I feel it from inside the tumor in my back.
Just
Like
The
Tumor
Now you begin to understand the terror in our eyes when these headaches hit and my husband and I look at each other, and do not say what is not allowed to be. I'm scared and cry, and he holds me, and knows my fear. I just want to get better. I just want to get past this freak show and move on. I just want to keep going.
The headaches seem to improve as the infections are treated with antibiotics. We hope they go away soon. Maybe then we won't worry.
Maybe.
Thursday, October 17, 2013
Random
When my husband walks past the right side of my bed on his way up the stairs, I like to stick my leg out and stop him, and he leans his buddha belly on my bare foot. For completely inexplicable reasons, this makes me ecstatically happy. I'm giggling like a school girl while I press my toes against his soft t-shirt, his warm body filling the arch of my foot. When we connect in that way it's like I'm grounded, my roots go through his strength and into the earth and I find my peace when I've lost it and become frazzled. I don't know if it's partly because I'm so happy that I can feel some things with the skin on my feet (even though they aren't 100% normal in nerve perception yet) or if it's just the fact that he used to tickle them all the time and now I like it when he gently cradles my foot against his strong trunk, but whatever it is, I absolutely adore it, and I don't care that it makes him laugh at me, not at all. In fact making him smile when I do it makes it even better. "Honey, my foot needs your tummy," is not an uncommon phrase in our lives, and I'm okay with that.
"You can skip this song, honey," I said as the first few piano notes came out of the speakers. It's my playlist, I like all the songs on it, but some are more mood-specific than others.
"No," he replied, and my mouth fell open. I can't remember him ever refusing to skip a song before. In fact, I often have the impression he's not hearing them completely, like the music and our singing in the car is just background noise for his non-stop brain, which is okay by us. The kids and I sing. We do it for ourselves, because we like singing; it's okay if he's daydreaming while we do it.
"What do you mean, 'no?' It's a sad song, I don't wanna hear it right now," I countered, sure that he would shrug and comply this time. Why would it matter to him that much what we listen to?
"I like this song," he said mildly. "I like to hear you sing it," and I felt myself blush. Still, after sixteen years of knowing each other, he can bring the hot flush to my cheeks with the simplest of compliments.
I was stunned. Of course I have my own favorite songs to sing, the ones I really feel in my heart, and seem the best suited to my vocal range and style. And the ones that have a nice easy warm-up range, and the ones that really challenge my pitch and control. I feel like I'm a decent singer, for the most part not unpleasant to listen to, and I love it so much I had to get over my fear of singing in front of others in order to get my "fix" when other people are in my car with me or while I was in the hospital. I had to learn to let strangers hear me sing, but I mostly sing for myself.
I guess it's not always background noise for him, though. Sometimes, he's really listening, enjoying my voice. I was pleased as punch about it. "Oh," I said with my shy smile. "Okay." So we let it play, Adele's sadly defiant "Someone Like You," and I made it as good as I could make it. Who wouldn't love a man who loves to hear you sing?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"You can skip this song, honey," I said as the first few piano notes came out of the speakers. It's my playlist, I like all the songs on it, but some are more mood-specific than others.
"No," he replied, and my mouth fell open. I can't remember him ever refusing to skip a song before. In fact, I often have the impression he's not hearing them completely, like the music and our singing in the car is just background noise for his non-stop brain, which is okay by us. The kids and I sing. We do it for ourselves, because we like singing; it's okay if he's daydreaming while we do it.
"What do you mean, 'no?' It's a sad song, I don't wanna hear it right now," I countered, sure that he would shrug and comply this time. Why would it matter to him that much what we listen to?
"I like this song," he said mildly. "I like to hear you sing it," and I felt myself blush. Still, after sixteen years of knowing each other, he can bring the hot flush to my cheeks with the simplest of compliments.
I was stunned. Of course I have my own favorite songs to sing, the ones I really feel in my heart, and seem the best suited to my vocal range and style. And the ones that have a nice easy warm-up range, and the ones that really challenge my pitch and control. I feel like I'm a decent singer, for the most part not unpleasant to listen to, and I love it so much I had to get over my fear of singing in front of others in order to get my "fix" when other people are in my car with me or while I was in the hospital. I had to learn to let strangers hear me sing, but I mostly sing for myself.
I guess it's not always background noise for him, though. Sometimes, he's really listening, enjoying my voice. I was pleased as punch about it. "Oh," I said with my shy smile. "Okay." So we let it play, Adele's sadly defiant "Someone Like You," and I made it as good as I could make it. Who wouldn't love a man who loves to hear you sing?
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
In the next few months, Medicare will become part of my life. This is one of those milestones I had hoped never to reach. I wasn't supposed to stay disabled and on Disability benefits long enough to qualify for Medicare. I was supposed to have completely recovered and gone back to work by now, in that secret inner progress chart of my control-freak life. I am disappointed, nervous, worried, and hopeful all at once. How much paperwork will this involve? How much will it complicate my private insurance benefits? Could this possibly result in my having more or better benefit coverage than I had with just private insurance? Or could this possibly relegate my private insurance to a secondary role with fewer benefits? I have a lot of research to do.
Tuesday, October 15, 2013
Everybody Poops (but not like me)
This topic has become so painful, I almost can't write it. In fact it's been sitting as a draft for weeks. But when I set out to chronicle this beautiful mess, I said I would tell the truth, and not hide things that are uncomfortable because someone else out there could be feeling like they're the only one. And because I do not want to be the only one.
Everybody poops, but not like me.
Most people poop so regularly they don't even think about it. They never ask themselves, did I go yesterday? How many days has it been since I pooped? But spinal cord injury has given me what is politely called "bowel motility" problems, which means sometimes I don't poop. I'm putting the food in, and instead of hopping on the first flight to Colon International (Exit-only) Port, the food is lounging around for an extended stay in the Intestinal Hotel. Sometimes exercising helps move things along, but not always. Sometimes I take a stool softener/laxative, and sometimes doing so causes me equal and opposite problems. Sometimes my medications or diet cause plumbing problems, too. Sometimes... okay, a lot of times, it is not safe for me to permit even the tiniest flatulence to pass, because doing so might soil my clothing and bed. You know how it is when you're stuck in a social situation where you absolutely can't fart no matter how badly you need to, and how painful and miserable that built up gas pain is? I'm like that all the time, Steven Wright used to say. I'm not like that all the time, but often. Often is bad enough.
Other people have tough poop days too, sometimes. Usually experienced in the privacy of a bathroom, though. Other people don't evacuate their bowel problems into a trash bag-lined bucket, and then have to ask someone more able-bodied to dispose of it. Other people have never had to work through the transition from diaper to independent toileting while they were old enough to remember it. We mercifully forget what it was like to have our parents wipe our bottoms, unless they are having to wipe our bottoms when we're in our thirties. That is unforgettable, for both parties, no matter how necessary and appreciated it was. And it was definitely appreciated. I have never before or since been in a situation where I felt so much gratitude and such devastating humiliation, all at the same time. At least I've moved beyond that stage.
Still, there's a lingering odor of embarrassment around here. I've made the leap to total independence during the day, graduated out of the fantastic daily assistance of the loving family member who's been helping me for more than a year. But it's not safe for me to dispose of my commode waste myself, so it has to be stored for disposal later, when my husband comes home. I try to manage the odor with Febreeze, but it's still a constant reminder that things are definitely not normal around here yet. I wonder when they ever will be.
~~~~~~~~~~~~~~~~~~
Most people poop so regularly they don't even think about it. They never ask themselves, did I go yesterday? How many days has it been since I pooped? But spinal cord injury has given me what is politely called "bowel motility" problems, which means sometimes I don't poop. I'm putting the food in, and instead of hopping on the first flight to Colon International (Exit-only) Port, the food is lounging around for an extended stay in the Intestinal Hotel. Sometimes exercising helps move things along, but not always. Sometimes I take a stool softener/laxative, and sometimes doing so causes me equal and opposite problems. Sometimes my medications or diet cause plumbing problems, too. Sometimes... okay, a lot of times, it is not safe for me to permit even the tiniest flatulence to pass, because doing so might soil my clothing and bed. You know how it is when you're stuck in a social situation where you absolutely can't fart no matter how badly you need to, and how painful and miserable that built up gas pain is? I'm like that all the time, Steven Wright used to say. I'm not like that all the time, but often. Often is bad enough.
Other people have tough poop days too, sometimes. Usually experienced in the privacy of a bathroom, though. Other people don't evacuate their bowel problems into a trash bag-lined bucket, and then have to ask someone more able-bodied to dispose of it. Other people have never had to work through the transition from diaper to independent toileting while they were old enough to remember it. We mercifully forget what it was like to have our parents wipe our bottoms, unless they are having to wipe our bottoms when we're in our thirties. That is unforgettable, for both parties, no matter how necessary and appreciated it was. And it was definitely appreciated. I have never before or since been in a situation where I felt so much gratitude and such devastating humiliation, all at the same time. At least I've moved beyond that stage.
Still, there's a lingering odor of embarrassment around here. I've made the leap to total independence during the day, graduated out of the fantastic daily assistance of the loving family member who's been helping me for more than a year. But it's not safe for me to dispose of my commode waste myself, so it has to be stored for disposal later, when my husband comes home. I try to manage the odor with Febreeze, but it's still a constant reminder that things are definitely not normal around here yet. I wonder when they ever will be.
Sunday, August 18, 2013
Just Drive
On Friday, my husband took a personal day to help me cope with losing the companionship (and babyhood) of our two daughters when they began all-day kindergarten this week. We took the opportunity to get out of the house together, in the day time, which felt bizarre because usually any time we have to ourselves is at night with the kids staying at their grandparents' or cousin's house. And I took the opportunity to drive everywhere we went, and made a point of not using assistive devices as much as possible: walking to and from my wheelchair without canes, stepping on and off a half-size curb without canes, etc. But we didn't really venture all that far from home, and all the driving was city-street driving.
I've been thinking a lot about freeway driving, though. Thinking about my anxieties. I remember when I was a kid, I always got carsick on our trips to the coast. The highway to the coast was extremely winding with many steep banked curves and dappled with so many patches of sunlight and shade that it almost had a strobe-light effect. I suffered every time we went until I turned 16 and starting driving there myself. Controlling the vehicle myself made a huge difference in whether I got nauseous, and I finally started to be able to have relaxed, enjoyable rides to the beach.
So I got to thinking maybe freeway driving would be like that, too. Maybe when I'm in control of my fate somewhat, I would have less anxiety. Today, while we went shopping with the kids, I was mulling that over in the back of my mind. After hitting the stores, we decided to get dinner at a restaurant a few miles away. It absolutely made the most sense that we should take the freeway there, and get there in less than 10 minutes. But I was still thinking it over, so while I was thinking, I took the back roads and got there in about 15 minutes.
It's a difficult situation, trying to evaluate the risk of panic attacks or emotional responses and decide whether I'm ready for that step or not. My instincts are ready, there've been enough ordinary traffic incidents to give ample evidence that my reflexes are as sharp as ever. I am totally in control of the variety of quick motions and delicate handling that are needed to respond to sudden traffic changes, obstacles, etc.
I know my body can handle it, it's the anxiety I'm worried about. What if a sudden swerve brings on a crying jag like the last time hubby had to swerve? What if there's a near-miss accident and I start hyperventilating and get all weepy? What if the highly-weaponized vanguard from the planet Snorfblat invades in the middle of our commute home? Okay, that last one is pretty unlikely, but no more pointless than all the other worries. I mean, come on, at this point I'm basically worrying about worrying.
I let the whole thing simmer on the back burner while we ate dinner. I enjoyed my blueberry pancakes with a sense of tongue-in-cheek humor: I allow myself just about as much blueberry foods as I want because, after all, they are supposedly a cancer-fighting superfood. Thanks, cancer! I love blueberry foods.
Sitting in the parking lot while we all got loaded in the car and buckled up, I thought again of my childhood. When I was 8, I took riding lessons, and was very excited to show my grandma how great I was doing when she came to visit us. But while she was watching, for the first time ever, I was thrown from a horse. I didn't yet know it as a guiding principle for many parts of life, but I did know that you were always supposed to get back on the horse when they throw you. I was hurting and embarrassed, but I had to get back on and finish that ride. Tenacity has always been a strong characteristic in me.
In the end, it came down to a pretty simple equation. If it feels cowardly and is more annoying to stay off the freeway than get on it, then it's time to get back on it. So when we left the restaurant, somewhere we've been many times before, I took the most natural route home that I always used to take. Sometimes you have to stop worrying and just drive. I got on the freeway.
And it was fine. It was ordinary and without fanfare. Nothing unusual happened, and we arrived home safely. Just another outing completed, just one more little victory in living our lives our way.
I've been thinking a lot about freeway driving, though. Thinking about my anxieties. I remember when I was a kid, I always got carsick on our trips to the coast. The highway to the coast was extremely winding with many steep banked curves and dappled with so many patches of sunlight and shade that it almost had a strobe-light effect. I suffered every time we went until I turned 16 and starting driving there myself. Controlling the vehicle myself made a huge difference in whether I got nauseous, and I finally started to be able to have relaxed, enjoyable rides to the beach.
So I got to thinking maybe freeway driving would be like that, too. Maybe when I'm in control of my fate somewhat, I would have less anxiety. Today, while we went shopping with the kids, I was mulling that over in the back of my mind. After hitting the stores, we decided to get dinner at a restaurant a few miles away. It absolutely made the most sense that we should take the freeway there, and get there in less than 10 minutes. But I was still thinking it over, so while I was thinking, I took the back roads and got there in about 15 minutes.
It's a difficult situation, trying to evaluate the risk of panic attacks or emotional responses and decide whether I'm ready for that step or not. My instincts are ready, there've been enough ordinary traffic incidents to give ample evidence that my reflexes are as sharp as ever. I am totally in control of the variety of quick motions and delicate handling that are needed to respond to sudden traffic changes, obstacles, etc.
I know my body can handle it, it's the anxiety I'm worried about. What if a sudden swerve brings on a crying jag like the last time hubby had to swerve? What if there's a near-miss accident and I start hyperventilating and get all weepy? What if the highly-weaponized vanguard from the planet Snorfblat invades in the middle of our commute home? Okay, that last one is pretty unlikely, but no more pointless than all the other worries. I mean, come on, at this point I'm basically worrying about worrying.
I let the whole thing simmer on the back burner while we ate dinner. I enjoyed my blueberry pancakes with a sense of tongue-in-cheek humor: I allow myself just about as much blueberry foods as I want because, after all, they are supposedly a cancer-fighting superfood. Thanks, cancer! I love blueberry foods.
Sitting in the parking lot while we all got loaded in the car and buckled up, I thought again of my childhood. When I was 8, I took riding lessons, and was very excited to show my grandma how great I was doing when she came to visit us. But while she was watching, for the first time ever, I was thrown from a horse. I didn't yet know it as a guiding principle for many parts of life, but I did know that you were always supposed to get back on the horse when they throw you. I was hurting and embarrassed, but I had to get back on and finish that ride. Tenacity has always been a strong characteristic in me.
In the end, it came down to a pretty simple equation. If it feels cowardly and is more annoying to stay off the freeway than get on it, then it's time to get back on it. So when we left the restaurant, somewhere we've been many times before, I took the most natural route home that I always used to take. Sometimes you have to stop worrying and just drive. I got on the freeway.
And it was fine. It was ordinary and without fanfare. Nothing unusual happened, and we arrived home safely. Just another outing completed, just one more little victory in living our lives our way.
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