We have a lot of snow. About 6 or 8 inches, with more expected, and high winds. And a rat who keeps his hole scrupulously clear of snow so he can come out of the basement into the yard and eat leftover birdseed. He's a big one. I put some traps down yesterday. The last rat we had fell for the sticky traps.
I've got a cold or something (headache, sore eyes, back, legs, congestion, sore throat) that just won't quit. It's given me a high (103 degrees) fever. I hadn't been taking my temperature so this was news to me, and E. gave me tylenol, which helped a lot. Every morning has seemed to be like this. I don't really know what it is.
I need to wrap Christmas and birthday presents for E (whose birthday is nearly on Christmas). This is really a lame post. But that's how I feel, I guess.
Saturday, December 20, 2008
Monday, November 17, 2008
Froggie Went a Courtin'
I've been listening to the song "Froggie Went a Courtin'" recently. Anyone who has been around two-year-olds will know why. But it interests me. I always thought he had a sword and pistol by his side, but now he wears his coat on the "satin side". Sounds like better advice for courtin' these days. What is it that Froggie rides, anyway?
I started thinking about all kinds of weird things about the song in spare moments. A frog and a mouse? And the mouse has a rat for an uncle? Unable to suspend my disbelief even when the song absolutely begs me to, I began imagining arguments soon after the wonder marriage of Froggie and Miss Mousie. The serious interspecies issues are overwhelming, basic things like reproduction and the meaning of life, and how to raise children if they should manage to have them. It seems like IVF is their only option, and even if that works, they have some issues. Their private conversations might go something like this:
-Miss Mousie, you just put you eggs over there and I'll do my thing.
-What do you mean, dear Froggie? I can't do that.
-What do you mean?
-My eggs are inside me. I give birth to live mousies.
-Froggies. And I don't quite get what you mean.
-I'm a mammal. I have a placenta filled with fluid inside me until the litter comes out.
-I still don't get it. Why lug all that water around inside you when they can swim around in this nice pond? That doesn't make sense.
-They're safer, for one thing. There are only six or so.
-Only six? We need hundreds! And what if something happens to you? They're so dependent.
-Well, what do you have in mind, Froggie?
-You put the eggs in the pond, as many as you can, and I fertilize them in the pond. We can be together and all, but they stay out here until they turn into frogs.
-Won't they get cold? They need a dry nest. And what will they eat?
-A dry nest? Hideous, outrageous, deadly. They need water.
-That's why they stay inside me.
-But then I can't fertilize them.
-Maybe you shouldn't.
-No. I want to have children.
-It doesn't sound like you care much. How could you leave them vulnerable in the pond all day and night?
-So you think you and your ways are better than me and mine. I can tell. Well, our frog way has worked since before your kind ever existed, and it will always work. Why there are hundreds? If something comes to eat them, like your uncle Rat, who gives me the creeps, I'm out of there, but he'll never get them all, and we can always make more.
-This conversation sickens me. And what will they eat?
-Bugs, things in the water, each other. I might even have a few if I get hungry! They're like delicious little fish!
-I don't think this will work out. I have up to six babies at a time, I feed them and protect them, and there's no way I'm leaving them with you now. You aren't even mouse enough to fertilize them correctly!
-I'm a frog. And I have a sword and pistol.
-This is all over. I'm going back to my den. You couldn't even lift the sword and pistol over there "by your side". I remember when a hunter dropped them. Your sword is just a knife, get over yourself! Get away from me, reverse your jacket, and don't court with mammals any more.
-Fine. I don't need a jacket anyway. My last mammilian prospect gave it to me. Look at the fur on the other side! Itchy and dry, but cuts down on my sunning time.
-I see why you reversed it. It looks a bit familiar. . . Hey!. . . is that mouse fur?
-Uuurp . . . Slurp . . . Gulp.
I started thinking about all kinds of weird things about the song in spare moments. A frog and a mouse? And the mouse has a rat for an uncle? Unable to suspend my disbelief even when the song absolutely begs me to, I began imagining arguments soon after the wonder marriage of Froggie and Miss Mousie. The serious interspecies issues are overwhelming, basic things like reproduction and the meaning of life, and how to raise children if they should manage to have them. It seems like IVF is their only option, and even if that works, they have some issues. Their private conversations might go something like this:
-Miss Mousie, you just put you eggs over there and I'll do my thing.
-What do you mean, dear Froggie? I can't do that.
-What do you mean?
-My eggs are inside me. I give birth to live mousies.
-Froggies. And I don't quite get what you mean.
-I'm a mammal. I have a placenta filled with fluid inside me until the litter comes out.
-I still don't get it. Why lug all that water around inside you when they can swim around in this nice pond? That doesn't make sense.
-They're safer, for one thing. There are only six or so.
-Only six? We need hundreds! And what if something happens to you? They're so dependent.
-Well, what do you have in mind, Froggie?
-You put the eggs in the pond, as many as you can, and I fertilize them in the pond. We can be together and all, but they stay out here until they turn into frogs.
-Won't they get cold? They need a dry nest. And what will they eat?
-A dry nest? Hideous, outrageous, deadly. They need water.
-That's why they stay inside me.
-But then I can't fertilize them.
-Maybe you shouldn't.
-No. I want to have children.
-It doesn't sound like you care much. How could you leave them vulnerable in the pond all day and night?
-So you think you and your ways are better than me and mine. I can tell. Well, our frog way has worked since before your kind ever existed, and it will always work. Why there are hundreds? If something comes to eat them, like your uncle Rat, who gives me the creeps, I'm out of there, but he'll never get them all, and we can always make more.
-This conversation sickens me. And what will they eat?
-Bugs, things in the water, each other. I might even have a few if I get hungry! They're like delicious little fish!
-I don't think this will work out. I have up to six babies at a time, I feed them and protect them, and there's no way I'm leaving them with you now. You aren't even mouse enough to fertilize them correctly!
-I'm a frog. And I have a sword and pistol.
-This is all over. I'm going back to my den. You couldn't even lift the sword and pistol over there "by your side". I remember when a hunter dropped them. Your sword is just a knife, get over yourself! Get away from me, reverse your jacket, and don't court with mammals any more.
-Fine. I don't need a jacket anyway. My last mammilian prospect gave it to me. Look at the fur on the other side! Itchy and dry, but cuts down on my sunning time.
-I see why you reversed it. It looks a bit familiar. . . Hey!. . . is that mouse fur?
-Uuurp . . . Slurp . . . Gulp.
Saturday, October 25, 2008
Dealing With Vestibular Loss
In my title I mention "vestibular loss." To look at my activities and some of these pictures, you'd think they were taken years ago. But I have indeed lost my vestibular system, 100%, because of a tobramycin overdose. I was reminded of this today when I got stuck on a bowl-shaped ride at the park, spinning and unable to stop. I just up and jumped off. No dizziness. That's the "up" side of having no vestibular system. For me right now, there is no longer really a "down" side, and this loss only happened in late summer, 2007, a few months after Liam was born.
I have to say that when I hear about other people's problems with vestibular loss, I have difficulty explaining my own symptoms and how I've recovered so well. Although it looked at the time like I would lose a lot of capabilities forever, I adapted rapidly the more I pushed the limits of my diminished abilities.
Initially, I was never dizzy and never suffered from vertigo. I just started falling down and losing my balance every time I moved my head (which is just about every time I moved my body). I needed to hold onto things to stay upright, and even that didn't always help. Leaning back in bed almost always caused me to fall sideways, and I could even fall out of a chair. Another problem, one that was more difficult but less obviously caused by the damage, was my complete inability to see anything if my head moved. If I stayed absolutely still, I could see just fine -- but any kind of vibration, movement, walking, turning my head, meant that I lost my vision entirely. Everything became an indecipherable blur. Apparently the vestibular system controls the movements our eyes make to account for head movement, without our ever knowing it until that vestibular feedback (which basically tells you where your head is, how it's oriented, and what it's doing, movement-wise) is gone.
As I understand it, I was never dizzy because I had complete loss of function in both ears. Unequal loss results in severe and disabling vertigo that never goes away. One option in that case is to intentionally destroy the remaining function and move on. I suppose one might get dizzy because of the visual blurring, or the new mismatch between other types of feedback and the loss of vestibular feedback. I didn't have that problem, as I said.
Typically, the visual problem goes away in a matter of months, as it did for me. The brain does something else with the eyes to compensate. It just takes a while, and it seems unconscious. In the meantime, you can't drive and other activites are limited. You also lack night vision entirely for some reason that doesn't have to do with movement. That also comes back in time. While the vision recovers, I coped by doing a few things. I shut my eyes when I knew my head would be moving, then opened them when I stopped (like when I went out walking). This doesn't work in the car, when movement is unpredictable. Another thing I did was just open and close my eyes for 'snapshots', which dealt with unpredictable motion (but not very well). After a while I could feel my eyes adopting a 'square wave' pattern, in which they tracked from one extreme to the other all the time, rolling around to the limits of movement in an attempt to get a moment of stillness relative to my head. I don't do or need any of these things now.
The movement and balance issues I worked on more consciously. I didn't go to therapy, although I roughly copied some basic exercises I read about on the internet. I just tried to push my limits and do the most difficult things I could do at any given time.
I walked a lot with two aids. At first, I used a pair of collapsible hiking sticks for feedback, then found that one walking stick worked well. I didn't stop carrying the stick for quite a while. By the time I quit taking it on walks I could run, jump, turn in the air, look around while walking or running, I had tried inline skating (which is alright -- the head stays more or less still if your form is good). I had tried bicycling (very very scary). On my walks I consciously tried to cover uneven ground and tough surfaces, stairs, nature trails, and so on. I also did calisthenics involving standing on one leg and moving my head and other limbs to get used to compensating.
The vision was a big obstacle and caused some tripping and stumbling until it cleared up. I had difficulty with things like leaning over and picking up objects off the ground for much longer than more basic things. Fast unexpected movements were much easier to react to than slow, gentle ones. My body went whichever way my head went for quite a while. At this point, a year later, it's like nothing ever happened, except that I don't ever get dizzy or get motion sickness. I can spin forever on a playground device and just step off like nothing ever happened. Maybe once a month I lose track of my balance in some little way,but at first I had to crawl up and down stairs.
I would say I'm completely functional now. I ride a bicycle and motorcycle safely, and drive safely. I'm again able to carry my son (who was born just before the vestibular loss, so I couldn't carry him for quite a while), jump and climb rocks, stairs, and slopes with him in my arms confidently, and I'm able to row as well as I've ever been able to -- some 'normal' people don't do as well under the best of circumstances.
I have a few theories that might explain my success, aside from persistently working at it. First, I may have had marginal function to begin with, so that the loss was no big deal, relatively speaking. I've been taking ototoxic drugs in high doses my whole life.
The second theory is that I've always been athletic and very coordinated. I've participated in sports that require a high degree of body awareness and centeredness for a long time and done well. When I was introduced to 'Swiss Balls', the large inflatable balls used for core/balance exercise, I could almost immediately kneel on top of the ball and keep still, and eventually was able to stand on top of the ball, among other things. I can't do that quite as well anymore, but it's close. I have good body awareness and fast reaction times -- in my life, I've almost never fallen in many fall-prone sports. I've never flipped a rowing shell, never fallen off a bike or motorcycle (except off road when testing the limits), and never fallen in hundreds of miles of inline skating except once (after getting a high speed tow from an unsuspecting car and then tripping on a curb in the middle of a parking lot by not jumping quite high enough). When I have fallen, I land on my feet or without injury. I've always been good at recovering from the unexpected. It may have been less of an adjustment than for most for my brain to just switch over to a combination of non-vestibular feedback loops and wiring that were already in place. I suppose this is a way of saying that even if I had full function before, I didn't necessarily rely on it.
There are a few good websites on proven exercises that have been used for years to compensate for vestibular loss, but my efforts to recover were really just to do the things I wanted to be able to do, and do them at increasing levels of difficulty: walk, climb the stairs, climb trees, walk in difficult places, walk without the stick, walk at night, walk at night without the stick, and so on. It was a process of progressively adding difficulty or additional skills. One specific thing that was very helpful was to wear a pair of very stiff shoes all the time. I found (on clearance, in my size, and fitting like they were made for me) a pair of Italian 'approach' hiking boots. These have a carbon fiber last that doesn't bend (the shoes have some rocker to them), and they are quite form-fitting -- they lace to the toe, have little cushioning, and are meant for mountaineering and rock climbing. These shoes helped provide feedback from the ground, and stabilized my feet. There was never any doubt about the type of surface I stood on, and they never slip, either. Because I relied so much on minor corrections transmitting accurately to the soles of my feet and the ground without delay or intermediation to stay upright, I think the shoes were helpful. Had I been wearing shoes with cushioning or loose shoes in which my feet might shift, keeping my balance would have been much more difficult. Shoes aren't so much an issue any more.
Apparently there are people born without functioning vestibular systems, and they never realize it until tested. They function fully in every way. I believe I have somehow reached that point. I can't say how or why, but it has been a conscious and persistent effort on my own without medical help. I set out to accomodate the problem, and ended up without a problem. I have difficulty remembering (or believing it, when I do remember) how disabled I really was at first, and how difficult something like getting out of a chair really was.
When I lost my vestibular system, my son was a few months old -- I could no longer pick him up or hold him, or walk with him, carry him, and so on. I was useless as a parent for about four to six months. It felt nearly hopeless, like I might never play as active a role as I wanted to in raising my son.
Recently I got my son a small bicycle helmet to use with a carrier that attaches to the bike frame (between the seat and handlebars). I'm pretty confident of my abilities at this point, as E doesn't ride bikes and is scared of them (but less so than the motorcycle -- which I'm more comfortable with around cars -- and less so than my driving, which I think [like everyone does] is possibly better than hers [that's through hard past experience with of course -- I know what to do!]. Interestingly, she is not scared of my open water rowing, where cold makes bailing out of the boat in rough water is a potential death sentence. I'm no great swimmer.
Here are a few of the sorts of things I looked at on the internet:
http://www.vestibular.org/vestibular-disorders/treatment/vestibular-rehab.php
http://www.tchain.com/otoneurology/treatment/rehab.html
http://www.tchain.com/otoneurology/treatment/cawthorne.html
The last link is a description of the Cawthorne-Cooksey exercises, on which I based a lot of what I did. They've been used for years with consistent success. Tai-Chi is also supposed to work. I did a few tai-chi type things as well.
So if you have your vestibular system wiped out by antibiotics, there is hope. You really don't need it.
P.S. -- more from the NYT Science section on the vestibular system: http://www.nytimes.com/2008/10/28/science/28angi.html?_r=1&scp=1&sq=vestibular&st=cse&oref=slogin . Apparently they think you need it. I think you can change everything else and get along without it (Apparently, according to the NYT, risking 'brain fog' during this process, which I can say might be true.)
I have to say that when I hear about other people's problems with vestibular loss, I have difficulty explaining my own symptoms and how I've recovered so well. Although it looked at the time like I would lose a lot of capabilities forever, I adapted rapidly the more I pushed the limits of my diminished abilities.
Initially, I was never dizzy and never suffered from vertigo. I just started falling down and losing my balance every time I moved my head (which is just about every time I moved my body). I needed to hold onto things to stay upright, and even that didn't always help. Leaning back in bed almost always caused me to fall sideways, and I could even fall out of a chair. Another problem, one that was more difficult but less obviously caused by the damage, was my complete inability to see anything if my head moved. If I stayed absolutely still, I could see just fine -- but any kind of vibration, movement, walking, turning my head, meant that I lost my vision entirely. Everything became an indecipherable blur. Apparently the vestibular system controls the movements our eyes make to account for head movement, without our ever knowing it until that vestibular feedback (which basically tells you where your head is, how it's oriented, and what it's doing, movement-wise) is gone.
As I understand it, I was never dizzy because I had complete loss of function in both ears. Unequal loss results in severe and disabling vertigo that never goes away. One option in that case is to intentionally destroy the remaining function and move on. I suppose one might get dizzy because of the visual blurring, or the new mismatch between other types of feedback and the loss of vestibular feedback. I didn't have that problem, as I said.
Typically, the visual problem goes away in a matter of months, as it did for me. The brain does something else with the eyes to compensate. It just takes a while, and it seems unconscious. In the meantime, you can't drive and other activites are limited. You also lack night vision entirely for some reason that doesn't have to do with movement. That also comes back in time. While the vision recovers, I coped by doing a few things. I shut my eyes when I knew my head would be moving, then opened them when I stopped (like when I went out walking). This doesn't work in the car, when movement is unpredictable. Another thing I did was just open and close my eyes for 'snapshots', which dealt with unpredictable motion (but not very well). After a while I could feel my eyes adopting a 'square wave' pattern, in which they tracked from one extreme to the other all the time, rolling around to the limits of movement in an attempt to get a moment of stillness relative to my head. I don't do or need any of these things now.
The movement and balance issues I worked on more consciously. I didn't go to therapy, although I roughly copied some basic exercises I read about on the internet. I just tried to push my limits and do the most difficult things I could do at any given time.
I walked a lot with two aids. At first, I used a pair of collapsible hiking sticks for feedback, then found that one walking stick worked well. I didn't stop carrying the stick for quite a while. By the time I quit taking it on walks I could run, jump, turn in the air, look around while walking or running, I had tried inline skating (which is alright -- the head stays more or less still if your form is good). I had tried bicycling (very very scary). On my walks I consciously tried to cover uneven ground and tough surfaces, stairs, nature trails, and so on. I also did calisthenics involving standing on one leg and moving my head and other limbs to get used to compensating.
The vision was a big obstacle and caused some tripping and stumbling until it cleared up. I had difficulty with things like leaning over and picking up objects off the ground for much longer than more basic things. Fast unexpected movements were much easier to react to than slow, gentle ones. My body went whichever way my head went for quite a while. At this point, a year later, it's like nothing ever happened, except that I don't ever get dizzy or get motion sickness. I can spin forever on a playground device and just step off like nothing ever happened. Maybe once a month I lose track of my balance in some little way,but at first I had to crawl up and down stairs.
I would say I'm completely functional now. I ride a bicycle and motorcycle safely, and drive safely. I'm again able to carry my son (who was born just before the vestibular loss, so I couldn't carry him for quite a while), jump and climb rocks, stairs, and slopes with him in my arms confidently, and I'm able to row as well as I've ever been able to -- some 'normal' people don't do as well under the best of circumstances.
I have a few theories that might explain my success, aside from persistently working at it. First, I may have had marginal function to begin with, so that the loss was no big deal, relatively speaking. I've been taking ototoxic drugs in high doses my whole life.
The second theory is that I've always been athletic and very coordinated. I've participated in sports that require a high degree of body awareness and centeredness for a long time and done well. When I was introduced to 'Swiss Balls', the large inflatable balls used for core/balance exercise, I could almost immediately kneel on top of the ball and keep still, and eventually was able to stand on top of the ball, among other things. I can't do that quite as well anymore, but it's close. I have good body awareness and fast reaction times -- in my life, I've almost never fallen in many fall-prone sports. I've never flipped a rowing shell, never fallen off a bike or motorcycle (except off road when testing the limits), and never fallen in hundreds of miles of inline skating except once (after getting a high speed tow from an unsuspecting car and then tripping on a curb in the middle of a parking lot by not jumping quite high enough). When I have fallen, I land on my feet or without injury. I've always been good at recovering from the unexpected. It may have been less of an adjustment than for most for my brain to just switch over to a combination of non-vestibular feedback loops and wiring that were already in place. I suppose this is a way of saying that even if I had full function before, I didn't necessarily rely on it.
There are a few good websites on proven exercises that have been used for years to compensate for vestibular loss, but my efforts to recover were really just to do the things I wanted to be able to do, and do them at increasing levels of difficulty: walk, climb the stairs, climb trees, walk in difficult places, walk without the stick, walk at night, walk at night without the stick, and so on. It was a process of progressively adding difficulty or additional skills. One specific thing that was very helpful was to wear a pair of very stiff shoes all the time. I found (on clearance, in my size, and fitting like they were made for me) a pair of Italian 'approach' hiking boots. These have a carbon fiber last that doesn't bend (the shoes have some rocker to them), and they are quite form-fitting -- they lace to the toe, have little cushioning, and are meant for mountaineering and rock climbing. These shoes helped provide feedback from the ground, and stabilized my feet. There was never any doubt about the type of surface I stood on, and they never slip, either. Because I relied so much on minor corrections transmitting accurately to the soles of my feet and the ground without delay or intermediation to stay upright, I think the shoes were helpful. Had I been wearing shoes with cushioning or loose shoes in which my feet might shift, keeping my balance would have been much more difficult. Shoes aren't so much an issue any more.
Apparently there are people born without functioning vestibular systems, and they never realize it until tested. They function fully in every way. I believe I have somehow reached that point. I can't say how or why, but it has been a conscious and persistent effort on my own without medical help. I set out to accomodate the problem, and ended up without a problem. I have difficulty remembering (or believing it, when I do remember) how disabled I really was at first, and how difficult something like getting out of a chair really was.
When I lost my vestibular system, my son was a few months old -- I could no longer pick him up or hold him, or walk with him, carry him, and so on. I was useless as a parent for about four to six months. It felt nearly hopeless, like I might never play as active a role as I wanted to in raising my son.
Recently I got my son a small bicycle helmet to use with a carrier that attaches to the bike frame (between the seat and handlebars). I'm pretty confident of my abilities at this point, as E doesn't ride bikes and is scared of them (but less so than the motorcycle -- which I'm more comfortable with around cars -- and less so than my driving, which I think [like everyone does] is possibly better than hers [that's through hard past experience with of course -- I know what to do!]. Interestingly, she is not scared of my open water rowing, where cold makes bailing out of the boat in rough water is a potential death sentence. I'm no great swimmer.
Here are a few of the sorts of things I looked at on the internet:
http://www.vestibular.org/vestibular-disorders/treatment/vestibular-rehab.php
http://www.tchain.com/otoneurology/treatment/rehab.html
http://www.tchain.com/otoneurology/treatment/cawthorne.html
The last link is a description of the Cawthorne-Cooksey exercises, on which I based a lot of what I did. They've been used for years with consistent success. Tai-Chi is also supposed to work. I did a few tai-chi type things as well.
So if you have your vestibular system wiped out by antibiotics, there is hope. You really don't need it.
P.S. -- more from the NYT Science section on the vestibular system: http://www.nytimes.com/2008/10/28/science/28angi.html?_r=1&scp=1&sq=vestibular&st=cse&oref=slogin . Apparently they think you need it. I think you can change everything else and get along without it (Apparently, according to the NYT, risking 'brain fog' during this process, which I can say might be true.)
Friday, October 24, 2008
Appointment on Monday, No ER Trip
I talked further with my CF/Transplant clinic. Seeing as how this isn't really an emergency, we've agreed to an appointment on Monday (when the doctor gets back from a conference or vacation). Nothing is progressing fast. I've had the opportunity to pay my bills, put new tires, a windscreen, and nearly complete the wiring on the motorcycle, and download movies and audiobooks just in case I'm in the hospital. And take Liam to the park again, get him a kid-sized soccer ball (which he loves), and generally relax and take care of things.
And the picture? Liam is running past me in his room. Is this a transparent metaphor for childhood rushing by fast, those charming years of quick learning and rapid accumulation of amazing skills rushing past me? Why yes, but it's just a picture, after all. He's going past me so fast you can barely see what he's doing or how he's doing it. He's making off with two dryer balls (pink football studded plastic things for mechanically fluffing laundry) -- for a while we were playing an inexplicably hilarious game of trading them back and forth, one for me and one for him, with that strict rule constant until he ran off with them, which was even funnier. The humor in this certainly was infectious. The humor of the absurd in the everyday, my favorite kind, blooms early.
And the picture? Liam is running past me in his room. Is this a transparent metaphor for childhood rushing by fast, those charming years of quick learning and rapid accumulation of amazing skills rushing past me? Why yes, but it's just a picture, after all. He's going past me so fast you can barely see what he's doing or how he's doing it. He's making off with two dryer balls (pink football studded plastic things for mechanically fluffing laundry) -- for a while we were playing an inexplicably hilarious game of trading them back and forth, one for me and one for him, with that strict rule constant until he ran off with them, which was even funnier. The humor in this certainly was infectious. The humor of the absurd in the everyday, my favorite kind, blooms early.
Tuesday, October 21, 2008
Not Feeling Great
I've received an invitation to the emergency room for tomorrow! I'm not looking forward to it. While these visits do lead to identification and treatment of what ails me (sometimes in a matter of weeks) I dislike them. My regular doctor is on vacation until next week, so I'll go through the ranks of doctors who don't know me so well and seem to be flummoxed by the number of different things to consider in either making a diagnosis or prescribing treatment. I'm short of breath, my heart beats too fast for what I'm doing, but my lungs don't seem in bad shape, and nothing else seems that bad. All of which leads me to believe the unlikely, which is that I have a blood problem (as in lymphoma recurrence or secondary cancer such as leukemia). Doubtful, although possible. I've also had the same symptoms without the blood cancer. But that isn't so reassuring, as that particular problem (advanced invasive fungal pneumonia) was possibly worse than cancer in terms of prognosis.
What's worrisome about cancer is that I've already been treated twice for Hodgkins and non-Hodgkins, so it's possible the same treatments wouldn't work again (I know that the Hodgkins treatment won't -- because of heart damage and other issues, that particular type of chemo is given once in a lifetime).
I'm not looking for sympathy. I probably just have a normal lung infection. I get around fine. Today I went to pick up a prescription, did some work on my motorcycle beforehand (so the turn signals worked and had a switch), and paid all my bills, among other activities. But rowing is beyond me at this point. I tried to go on Sunday evening and an easy paddle was the equivalent of racing from the point of view of my heart and lungs -- a normal pace, heart rate 110-120, one or two breaths a stroke, turned into dead slow, heart rate 165+ (hard to achieve, as I usually have to work to get my heart rate over 150), three to four breaths a stroke. I can't put my finger on why. Short exertion is fine -- I'm not weak -- but try to lift the same thing ten times, that's a problem.
The pictures -- why? Because I like them. One is E reading to Liam and something funny happened. The other is Liam on Saturday just before we went for an (exhausting) walk to the playground/dog run area with Mollie. He's excited about it like that every time. I'm just about as excited even if I don't feel so well. Then we watch pee-wee soccer, and then we come home and have lunch.
Thursday, October 16, 2008
Potential Post-Transplant Issues, Or:I should be doing something else!
DISORGANIZED
I suppose I should be rowing, or fixing my motorcycle (a complete rewire job after the headlamp switch shorted out -- including two additional headlamps, a brighter main headlamp, led running lights all around, new switches, a new armature to hold all the lights, an attempt to make them separately switchable so the magneto is up to also recharging the battery, fuses all around [lacking in the factory configuration] and, as an experiment, a small blower to see if I can get more power from the engine by supercharging it -- although figuring out whether higher air pressure directly to the carburetor will affect the energy produced if the mixture is made richer at the same time is more calculation than I'm interested in attempting.)
How does this relate to my lung transplant? I excuse my constant forgetfulness and state of disorganization by telling myself I'm trying to compensate for brain damage caused by years of severe oxygen deprivation. My oxygen saturation for about three years preceding my transplant was never over 85%, and usually under 80%. No amount of C-PAP exposure or oxygen supplementation could change that. This level caused symptoms such as tunnel vision, inability to complete fine motor operations like making change or distinguishing between coins by feel, or starting a screw by hand. It affected my judgment and I couldn't drive. Most of all, these levels are said to damage the pre-frontal cortex, that part of the brain responsible for judgment, planning, and organizing the activities of the rest of the brain. You might call it the 'grand coordinator' of the brain, the 'big planner', the lid on your emotions, your social interface, your calendar and traffic light all in one. Although this is off the top of my head (you be the judge as to whether I should rely on myself to tell anyone these things!), I think the basic accuracy, the basic idea, is sound.
I read somewhere, and if I weren't so lazy I'd get a quotation for you, that low oxygen levels (such as 75%) can measurably damage cognition in adults after exposures of just a few days. This damage shows up first in the prefrontal cortex. I wonder what happens after a few years, including months at a time below 70%. Who knows. But that's my story and I'm sticking to it (for now). It's had consequences since the transplant in employment, self-care, relationships, and has even led to treatment for ADD, which helps but which I didn't need before my transplant.
There's a lot to do that seems to precede many of the substantive things I'd really like to do, aside from rowing, which I do enough but wish I did every day. I'd like to make music, make toys and musical instruments for Liam, finish several outstanding projects, wire the rest of the house and outside for sound (now it's just the living room, the car, and the garage), make metal sculpture, paint, write, and so many other things that I can't keep track of them in my head or on paper. Maybe this will help -- but not much else, I should warn myself, has helped up to now. Here is a pictorial essay of the disorganization that not only represents the disorganization I find in my head (does it represent or does it result directly?), but also hinders my efforts to 'do things,' by making cleaning the first thing to turn to, paralyzing me by sheer lack of space and lack of knowledge as to the location of the most basic of things (where are my electrical connectors? I have lots and lots of them, but I'm scrounging them off the floor!). These things are true, and deeper than they look, but the disorganization is unfair to E., who needs a space of her own to do her own things, and to Liam, who is increasingly exposed to more dangerous items the taller and more mobile he gets.
Back to the pictures. Prepare to be shocked. You might think a few things: (a) I have a nice place (true -- shop, garage, extra room, big spaces), (b) I have lots of stuff (true, true, and true), and (c) that looks like a few days of concentrated work to get in shape (probably true -- "concentration" is the obstacle here).
Feel free to draw conclusions:
1. A disorganized guest room. No guest could sleep here at this point unless they are not bothered by lying on the futon without folding it out. This was meant to double as an office and sewing/quilting/hobby room for E (I have PLENTY of other spaces). It doesn't double as anything other than a clutter repository and a space for . . . . GUITARS! [to paraphrase The Clash . . . "Know your rights . . . alllllll . . . Three of 'em!]
2. A bandsaw. First the correct blade length eluded me for a year or so. Then I realized that the crooked cut wasn't the blade. Or anything else I can discern. It cuts about 75% straighter after sitting where it is for about 18 months, where it has been reassembled numerous times. I have a lot of tools to organize, adjust, and, most of all, find. I know I have them. I don't know where they are. Same thing with consumable parts for them, paints, fasteners, glues, materials, and whole half-finished projects.
.3. Three bicycles. One has a child seat on it that doesn't fit. The seat needs moving to the most obscure bike (behind the blue water cans). The green bike works fine It's a fixed gear bike and real workout to ride, and it won't hesitate to throw me over if I lose my concentration. The obscured bike was a top-grade aluminum mountain bike in 1985, has been used hard for years, and needs a lot of work. The bike with the child seat is E's, with a long seatpost for me, and needs a little work. Why three bikes? Different uses. Don't ask about the OTHER four bikes upstairs from the shop, one of which is a nice recumbent I'd really like to be able to ride . . . with some work.
4. The motorcycle. I love it, E. hates it. To most, it looks ratty. But it goes where I want. But wait, there's another . . . exactly the same minus some parts . . . A 'parts bike' is certainly a luxury in these times. But I think it may be cheaper than parts, if it has the part you need. The extra gas tank was a help. Except that it blocks the shelves, it is actually registered, etc. etc.
5. The living room. Needs work now that Liam can walk and get any dangerous or delicate object laying about next to my chair.
6. Bookcase. Looks simple enough. But there are piles of books everywhere, and about eight or ten simililar stuffed bookcases. This one needs to go into an existing array of cases.
7. Painting. There are quite a few. They need a place, along with lots of other things. They don't belong in the garage.
Wednesday, October 8, 2008
Procedure Time
Liam will have a 'procedure' -- what we usually call a minor surgery -- to correct a hydrocele tomorrow. It should be a routine outpatient thing, but it seems like dealing with someone who can't really talk in a post-surgical context adds a layer of difficulty. This notion comes from my experiences with surgery, which haven't ever been routine.
Still rowing, but losing energy. We took the chimney out of the house (it was an earthquake hazard) without fully securing the place from dust. With a full-house filter running 24/7 and a lot of cleaning, it seems alright now -- but I will note that my air compressor I use for inhaled hypertonic saline actually melted down while I was using it. That's right, the case deformed. It got too hot to touch. See actual illustration. It looks like a David Cronenberg prop, doesn't it? Like something aside from air is about to emerge. No such luck. Not that I'd want my compressor inserting anything into my body for later retrieval.
Still rowing, but losing energy. We took the chimney out of the house (it was an earthquake hazard) without fully securing the place from dust. With a full-house filter running 24/7 and a lot of cleaning, it seems alright now -- but I will note that my air compressor I use for inhaled hypertonic saline actually melted down while I was using it. That's right, the case deformed. It got too hot to touch. See actual illustration. It looks like a David Cronenberg prop, doesn't it? Like something aside from air is about to emerge. No such luck. Not that I'd want my compressor inserting anything into my body for later retrieval.
Subscribe to:
Posts (Atom)
