I'm not very good at waiting. This will come as no shock to those of you who know me personally, but for those who don't I must confess to not always being the model of patience and tranquility. Hubby and I like to claim that he has my share of patience, by way of excusing my lack and explaining his abundance. Right now I am stuck waiting for surgery to finally be rid of this extra large kidney stone.
Last week we saw the large stone specializing urologist, and were scheduled for extraction on Jan. 30, which seems so very far away. Especially since the ureter stent they placed to help drain the kidney affected by the stone causes a lot of bladder irritation and pain on evacuating. I've finished my course of aggressive antibiotics, so there's only the phenazopyridine to fight the discomfort. I'm diligently fighting off a cold, constantly hacking and coughing and blowing my nose so it can't settle into my chest. There's not much else I can do to try to be ready for surgery.
But there's plenty to help me pass the time in between. Like seeing my endocrinologist last week, and being thrilled to confirm that my blood sugars have been in great control, my A1c value decreased from the high sixes to 6.3, and getting permission to drop from four glucose checks a day to two. It's fantastic to get some good news for a change.
A trend we will hopefully continue Monday, when I see my oncologist for those all important blood tests, that will, I'm sure, continue to show NO signs of any dangerous changes to my tumor or the rest of my system. The lab will also be running some tests ordered by my endocrinologist to keep an eye on my somewhat questionable thyroid hormone levels. Let's hope that turns out to be a non-issue.
Meanwhile the kids are all doing excellent in school, all A's and B's, so we took them out to celebrate their report cards last night, and to spend some of their gift money on the toys of their choice. The weather took a break from sub-zero wind chills to make that a pleasant afternoon, and I never forget to be grateful that I can still go and do those types of things with my family. If I'm going to spend a couple more weeks waiting for surgery, at least they will be good weeks.
Sunday, January 12, 2014
Sunday, January 5, 2014
New Year's Resoluteness
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.
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.
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.
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