In the 2+ years since her brain surgery, she has apparently developed heightened senses of smell and hearing. I'm not joking. She can hear the train approaching before anyone else. She smells the coffee blocks away from the coffeeshop. She sings along with music the neighbor is playing, which is barely perceptible to the normal ear. And my other sister, M, has warned me never to fart in AL's presence, because she will smell it, and she will call you out.
The only conclusion I can draw from all this is that AL's brain is compensating for her loss of peripheral vision and slower language processing abilities in part by giving her superhero smell and hearing capabilities. Not exactly on par with flying or reading minds. But shoot, I'm impressed.
Showing posts with label health. Show all posts
Showing posts with label health. Show all posts
Sunday, December 6, 2009
Friday, October 2, 2009
Back Up, Back At 'Em
After three days home sick, I'm finally back in the game. Back at work and off the meds, I'd say I'm about 95%. That's not bad considering how terrible I felt on Tuesday morning - achey, sweaty, cold, congested, the skin around my nose so dry that it hurt to sneeze. We didn't have any tissues in the apartment, so I was stuck with toilet paper - owie.
After calling in sick and writing a quick self-pitying blog post, I spent the rest of Tuesday sticking diligently to K's Plan: stay warm, stay hydrated, stay medicated and don't exert any unnecessary energy. My adversaries - boredom and an endless internet, that pile of laundry in the corner and the paper that isn't going to write itself. Allies - my snuggly blue robe, Dristan Cold medicine, season one of Dexter and, most of all, K.
K doesn't work on Tuesdays, so he was available to bring me hot chocolate, a scone, soup, a sandwich and a quesadilla. (As you can see, I didn't lose my appetite.) He even went to the store and got some moisturizing lotion-infused Kleenex, which are amazing, by the way. We saw on tv later that same day that some environmental groups are currently campaigning against this type of super-soft face and toilet tissue, saying that the ultra plush varieties are made from the pulp of really old trees (decades or even centuries). Is it not possible to make ΓΌber fluffy tissue out of recycled paper products? If not, we definitely need to work on it.
Anyway, I spent all of Tuesday reading, sleeping and watching Dexter. And more of the same on Wednesday, except K was at work so I had to refill my own water glass and make my own food. Later, I found myself in a bit of a conundrum. I had previously purchased a ticket to see Audrey Niffenegger read from her new book in Andersonville. I convinced myself that it was reasonable for me to go: I'll bundle up and sit in the way back and if it goes long, I'll just leave early... And so, after 45 hours of Sticking To The Plan, I finally broke step.
I woke up this morning feeling much better and so, so happy for it. I might have burst into song but K was still sleeping soundly and I didn't want to wake him. We'd both been woken up a few times in the wee hours of the night by our new neighbors' six-month-old baby. Well, we weren't woken by the baby actually - more like the baby daddy. When the baby woke up, the dad would start singing really loudly. It was muffled like the adults in the Peanuts movies, but really exaggerated, sort of like - dare I say it? - Barney the purple dinosaur. This would keep us awake for fifteen minutes or so at a stretch. Then we'd fall back asleep for a while until the next performance.
Despite the relatively poor night's sleep, I am having a wonderful day. Being sick even for a few days is a humbling experience and makes me so thankful to be healthy and alive. Leaving work at 5, I felt so good that I decided to go to my regular yoga class, but halfway there, I remembered that my gym was hosting some sort of art event in the studio. So neighborhoody, which normally I love, but sometimes I just want my gym to be more gym and less community center. Oh well, I suppose I can make room in my heart for local artists. I can always just curl up on the couch and watch Dexter. I may be getting a little too good at Plan K.
After calling in sick and writing a quick self-pitying blog post, I spent the rest of Tuesday sticking diligently to K's Plan: stay warm, stay hydrated, stay medicated and don't exert any unnecessary energy. My adversaries - boredom and an endless internet, that pile of laundry in the corner and the paper that isn't going to write itself. Allies - my snuggly blue robe, Dristan Cold medicine, season one of Dexter and, most of all, K.
K doesn't work on Tuesdays, so he was available to bring me hot chocolate, a scone, soup, a sandwich and a quesadilla. (As you can see, I didn't lose my appetite.) He even went to the store and got some moisturizing lotion-infused Kleenex, which are amazing, by the way. We saw on tv later that same day that some environmental groups are currently campaigning against this type of super-soft face and toilet tissue, saying that the ultra plush varieties are made from the pulp of really old trees (decades or even centuries). Is it not possible to make ΓΌber fluffy tissue out of recycled paper products? If not, we definitely need to work on it.
Anyway, I spent all of Tuesday reading, sleeping and watching Dexter. And more of the same on Wednesday, except K was at work so I had to refill my own water glass and make my own food. Later, I found myself in a bit of a conundrum. I had previously purchased a ticket to see Audrey Niffenegger read from her new book in Andersonville. I convinced myself that it was reasonable for me to go: I'll bundle up and sit in the way back and if it goes long, I'll just leave early... And so, after 45 hours of Sticking To The Plan, I finally broke step.
I woke up this morning feeling much better and so, so happy for it. I might have burst into song but K was still sleeping soundly and I didn't want to wake him. We'd both been woken up a few times in the wee hours of the night by our new neighbors' six-month-old baby. Well, we weren't woken by the baby actually - more like the baby daddy. When the baby woke up, the dad would start singing really loudly. It was muffled like the adults in the Peanuts movies, but really exaggerated, sort of like - dare I say it? - Barney the purple dinosaur. This would keep us awake for fifteen minutes or so at a stretch. Then we'd fall back asleep for a while until the next performance.
Despite the relatively poor night's sleep, I am having a wonderful day. Being sick even for a few days is a humbling experience and makes me so thankful to be healthy and alive. Leaving work at 5, I felt so good that I decided to go to my regular yoga class, but halfway there, I remembered that my gym was hosting some sort of art event in the studio. So neighborhoody, which normally I love, but sometimes I just want my gym to be more gym and less community center. Oh well, I suppose I can make room in my heart for local artists. I can always just curl up on the couch and watch Dexter. I may be getting a little too good at Plan K.
Tuesday, September 29, 2009
This Doesn't Bode Well
Today I am sick. I feel miserable. I got quite a bit of sleep last night because of all the meds I took in a concentrated effort to Knock Myself Out, but woke up sporadically with cold sweats. From really weird dreams, to boot. Yick.
K's tried-and-true plan for getting well as soon as humanly possible consists of staying under blankets, drinking tons of liquids, and not leaving the bed or couch except to go to the other one (or the bathroom). In the past, I haven't been very good at adhering to the plan, deciding at some point mid-day that it would be a good idea for me to go to the library or throw in a load of laundry.
Today I vow to diligently stick to Plan K. Even though by sitting here at the desk typing a blog post I have already diverted. Ok, ok, starting NOW.
K's tried-and-true plan for getting well as soon as humanly possible consists of staying under blankets, drinking tons of liquids, and not leaving the bed or couch except to go to the other one (or the bathroom). In the past, I haven't been very good at adhering to the plan, deciding at some point mid-day that it would be a good idea for me to go to the library or throw in a load of laundry.
Today I vow to diligently stick to Plan K. Even though by sitting here at the desk typing a blog post I have already diverted. Ok, ok, starting NOW.
Thursday, June 25, 2009
Almost No-Work Whole Grain Bread: Take One
"Almost No-Work." I like the sound of that. So I decided to give this recipe from Mark Bittman a go.
1) Combine 1/2 teaspoon instant yeast, 2 teaspoons salt and 3 cups whole wheat flour in a large bowl. I got fancy and used 2 cups whole wheat flour plus one cup dark rye flour.
2) Add 1 and 1/2 cups water and stir until blended; the dough should be quite wet and sticky but not liquid. At this point, I fretted over whether my dough was in fact wet and sticky enough. K advised me to "just go with it," so I did.
3) Cover the bowl with plastic wrap and let it rest in a warm place for at least 12 and up to 24 hours. Well, my non-air-conditioned apartment should be warm enough. It's been in the mid-90's in Chicago the last few days. The dough is ready when its surface is dotted with bubbles. Rising time will be shorter at warmer temperatures, or a bit longer if your kitchen is chilly. It was 9:30pm on Tuesday when I started the rise. As I left for work 11 hours later, the dough looked ready, but I wasn't. I had to hurry to the office, so the rise continued for 9 more hours, like it or not.
4) Measure about 2 tablespoons olive or vegetable oil. Use some of the oil to grease the loaf pan. If you like, add 1 cup chopped nuts, seeds, dried fruit or proofed whole grains. Transfer the dough to the loaf pan, and use a rubber spatula gently to settle it in evenly. Brush the top with the remaining oil and sprinkle with cornmeal if you like. The surface of my dough was no longer dotted with bubbles when I got home from work on Wednesday. I quickly prepped it for the second rise, without adding any extras.
5) Cover with a towel and let rise until doubled, an hour or two depending on the warmth of your kitchen. When it's almost ready, heat the oven to 350F.
6) Bake the bread until deep golden and hollow-sounding when tapped, about 45 minutes. I tapped it and it actually sounded hollow! Almost cavernous - hooray! Immediately turn out of the pan onto a rack and let it cool before slicing.
Here's a picture of my finished product.
A sight for sore eyes. K and I let it cool and then dug in. It tasted not bad at all. Dense and full-flavored, thanks at least in part to the dark rye. The recipe had warned that it would not make a very high loaf, but personally I prefer half-sandwiches, so that suits me just fine.
Here's a picture of K and I after enjoying the first few slices of my very first home-baked loaf of bread. We're pleased, as you can see. Delighted. Downright chummed.
1) Combine 1/2 teaspoon instant yeast, 2 teaspoons salt and 3 cups whole wheat flour in a large bowl. I got fancy and used 2 cups whole wheat flour plus one cup dark rye flour.
2) Add 1 and 1/2 cups water and stir until blended; the dough should be quite wet and sticky but not liquid. At this point, I fretted over whether my dough was in fact wet and sticky enough. K advised me to "just go with it," so I did.
3) Cover the bowl with plastic wrap and let it rest in a warm place for at least 12 and up to 24 hours. Well, my non-air-conditioned apartment should be warm enough. It's been in the mid-90's in Chicago the last few days. The dough is ready when its surface is dotted with bubbles. Rising time will be shorter at warmer temperatures, or a bit longer if your kitchen is chilly. It was 9:30pm on Tuesday when I started the rise. As I left for work 11 hours later, the dough looked ready, but I wasn't. I had to hurry to the office, so the rise continued for 9 more hours, like it or not.
4) Measure about 2 tablespoons olive or vegetable oil. Use some of the oil to grease the loaf pan. If you like, add 1 cup chopped nuts, seeds, dried fruit or proofed whole grains. Transfer the dough to the loaf pan, and use a rubber spatula gently to settle it in evenly. Brush the top with the remaining oil and sprinkle with cornmeal if you like. The surface of my dough was no longer dotted with bubbles when I got home from work on Wednesday. I quickly prepped it for the second rise, without adding any extras.
5) Cover with a towel and let rise until doubled, an hour or two depending on the warmth of your kitchen. When it's almost ready, heat the oven to 350F.
6) Bake the bread until deep golden and hollow-sounding when tapped, about 45 minutes. I tapped it and it actually sounded hollow! Almost cavernous - hooray! Immediately turn out of the pan onto a rack and let it cool before slicing.
Here's a picture of my finished product.
A sight for sore eyes. K and I let it cool and then dug in. It tasted not bad at all. Dense and full-flavored, thanks at least in part to the dark rye. The recipe had warned that it would not make a very high loaf, but personally I prefer half-sandwiches, so that suits me just fine.Here's a picture of K and I after enjoying the first few slices of my very first home-baked loaf of bread. We're pleased, as you can see. Delighted. Downright chummed.
Monday, June 22, 2009
How 'Bout That Blood Sugar
Back in April, I finally made a doctor's appointment, the easiest task I've ever managed to neglect for nearly a decade. Come mid-May, it was time to go in for my physical, and I actually found myself looking forward to it. I was eager to get my official nod and a clean bill of health. After the visit, I felt marvelous - like I had done myself a real solid. And this in spite of nearly fainting during a blood draw attempt.
A few weeks after my appointment, I received via snail mail a print-out with all my blood test results. I was unpleasantly surprised to see that the line for glucose was circled with a note reading "slightly + blood sugar." In her cover letter, my new doctor oh-so-helpfully recommended that I "work on eating healthy and exercising regularly to prevent the development of diabetes in the future." Well, here's the thing, doc: I already work out an average of four times a week (and that's not counting my beach volleyball league on Wednesdays), which is about as much as my schedule will allow. I already try to make healthy choices when it comes to food, and my personal chef - er, I mean, K - prepares quite nutritious meals. Moreover, perhaps you shouldn't send vague cover letters casually dropping the names of potentially serious diseases, completely devoid of meaningful context, to individuals who expected you to tell them that they are in perfect health. Perhaps some of those individuals may be prone to freaking out... Really though, ya couldn't have called?
It was time to bring out my big guns. So I called my mom (duh). She said that given the family history, I probably have a genetic tendency towards elevated blood sugar, which made me feel simultaneously a little better (It's not my fault!) and a little worse (There's nothing I can do!) To keep it in check, I should try to make a few easy adjustments to my diet, and it's "so much better to make some small changes now than to have to make some big changes later on." So
substitute any white rice with brown rice, and any pasta should be whole wheat. (Done!) Cut down on bagels and eat only whole grain bread. (Life sans bagels could be tough, but I'll survive.) Fewer sweets whenever possible, (I don't think I consume many as is, but ok.) and... try to drink less beer. (Sob!)
Let's ignore the beer thing for now and focus on something slightly less painful and wholly more manageable. Bread! According to Mark Bittman, New York Times foodie and author of Food Matters, "whole wheat" and "whole grain" breads that are typically available at the grocery store are phonies, usually containing only 20 percent whole wheat flour and 80 percent white flour. Even whole wheat bread bought from a less shamelessly commercial outlet, like one's local bakery, is likely to contain mostly white flour unless otherwise marked. Outrageous! To solve this problem, I've purchased my very own whole wheat and dark rye flours, and this week I am going to bake some bread. Experienced baker I am not, but if I can make this work for me, it holds grand potential for both my blood sugar and my pocketbook. Ain't that a kick in the butt?
A few weeks after my appointment, I received via snail mail a print-out with all my blood test results. I was unpleasantly surprised to see that the line for glucose was circled with a note reading "slightly + blood sugar." In her cover letter, my new doctor oh-so-helpfully recommended that I "work on eating healthy and exercising regularly to prevent the development of diabetes in the future." Well, here's the thing, doc: I already work out an average of four times a week (and that's not counting my beach volleyball league on Wednesdays), which is about as much as my schedule will allow. I already try to make healthy choices when it comes to food, and my personal chef - er, I mean, K - prepares quite nutritious meals. Moreover, perhaps you shouldn't send vague cover letters casually dropping the names of potentially serious diseases, completely devoid of meaningful context, to individuals who expected you to tell them that they are in perfect health. Perhaps some of those individuals may be prone to freaking out... Really though, ya couldn't have called?
It was time to bring out my big guns. So I called my mom (duh). She said that given the family history, I probably have a genetic tendency towards elevated blood sugar, which made me feel simultaneously a little better (It's not my fault!) and a little worse (There's nothing I can do!) To keep it in check, I should try to make a few easy adjustments to my diet, and it's "so much better to make some small changes now than to have to make some big changes later on." So
substitute any white rice with brown rice, and any pasta should be whole wheat. (Done!) Cut down on bagels and eat only whole grain bread. (Life sans bagels could be tough, but I'll survive.) Fewer sweets whenever possible, (I don't think I consume many as is, but ok.) and... try to drink less beer. (Sob!)Let's ignore the beer thing for now and focus on something slightly less painful and wholly more manageable. Bread! According to Mark Bittman, New York Times foodie and author of Food Matters, "whole wheat" and "whole grain" breads that are typically available at the grocery store are phonies, usually containing only 20 percent whole wheat flour and 80 percent white flour. Even whole wheat bread bought from a less shamelessly commercial outlet, like one's local bakery, is likely to contain mostly white flour unless otherwise marked. Outrageous! To solve this problem, I've purchased my very own whole wheat and dark rye flours, and this week I am going to bake some bread. Experienced baker I am not, but if I can make this work for me, it holds grand potential for both my blood sugar and my pocketbook. Ain't that a kick in the butt?
Monday, June 8, 2009
Prolonged Absence of Buzz
I'm proud to say that I've successfully completed my WWC (Week Without Coffee). By far the biggest payoff was the see, I told you I could do it feeling. I even did it without being ridiculously irritable or mean to anyone (I think). The first couple of days were relatively easy, but then it got tough as my cravings intensified. I correctly predicted that I would not suffer headaches or any other physical withdrawal symptoms, but my mental battles with myself could get pretty brutal.
I was especially tempted after lunch on Tuesday (5-day mark), but no, I told myself, I can and will hold myself accountable. After that, I seemed to be over the hump, and it got easier again. It was a bell curve, if you will (sorry, my inner nerd is always rambunctious and occasionally irrepressible) - here's a visual:
On Thursday morning, I checked my previous WWC post to see exactly when my week would be up - 1:58pm. I decided that I would break my coffee fast the first time I had a real urge; I wouldn't drink it right at 1:58pm just because I could. So I ended up going without until Friday after lunch. A whole extra day! I broke my fast at Dunkin' Donuts because Friday was National Doughnut Day, and I never pass up a chance to get a free doughnut!
Within moments of drinking the first half of my small DD coffee, I could feel the caffeine coursing through my veins. And I must say, I didn't miss that sensation. Based on my WWC, I seem to crave coffee not for the caffeine buzz but more for its taste and familiar comfort. What I hope to take away from the experience is a greater tendency to ask myself, Do I really want another cup or would I be drinking it 'just because'? I think this will lead me to drink a little less coffee from now on and maybe, just maybe, even reach for the decaf every once in a while.
Except for the prolonged absence of buzz, I didn't notice any differences in the way my body was feeling without coffee. I suppose I would have to take on the challenge for much longer than one week to track any possible changes. But that was never, and isn't now, my intention. I know my overall health is affected by a vast and varied compendium of factors, some of which are far beyond my control. Surely coffee alone is not a deal maker or breaker. So drink up, fiends, and mark your calendar with my new favorite day: National Doughnut Day is always the first Friday in June.
I was especially tempted after lunch on Tuesday (5-day mark), but no, I told myself, I can and will hold myself accountable. After that, I seemed to be over the hump, and it got easier again. It was a bell curve, if you will (sorry, my inner nerd is always rambunctious and occasionally irrepressible) - here's a visual:
On Thursday morning, I checked my previous WWC post to see exactly when my week would be up - 1:58pm. I decided that I would break my coffee fast the first time I had a real urge; I wouldn't drink it right at 1:58pm just because I could. So I ended up going without until Friday after lunch. A whole extra day! I broke my fast at Dunkin' Donuts because Friday was National Doughnut Day, and I never pass up a chance to get a free doughnut!
Within moments of drinking the first half of my small DD coffee, I could feel the caffeine coursing through my veins. And I must say, I didn't miss that sensation. Based on my WWC, I seem to crave coffee not for the caffeine buzz but more for its taste and familiar comfort. What I hope to take away from the experience is a greater tendency to ask myself, Do I really want another cup or would I be drinking it 'just because'? I think this will lead me to drink a little less coffee from now on and maybe, just maybe, even reach for the decaf every once in a while.
Except for the prolonged absence of buzz, I didn't notice any differences in the way my body was feeling without coffee. I suppose I would have to take on the challenge for much longer than one week to track any possible changes. But that was never, and isn't now, my intention. I know my overall health is affected by a vast and varied compendium of factors, some of which are far beyond my control. Surely coffee alone is not a deal maker or breaker. So drink up, fiends, and mark your calendar with my new favorite day: National Doughnut Day is always the first Friday in June.
Thursday, May 28, 2009
A Week Without Coffee
If you know me (which, if you're reading this, you almost certainly do), you know that I love me some coffee. There's something about a nice, hot cup in the morning or after a meal that just hits the spot like nothing else can. I also enjoy the process of making coffee - the simple, sequential, familiar steps that lead up to the pressing of the 'brew' button, the comforting noise of the coffeemaker and finally, the wonderful smell and taste of fresh coffee. Normally, I just sip mine straight-up, no cream or sugar, but occasionally a nice mocha or cappuccino is divine.This week I'm going to do something sort of crazy, something almost bordering on insane... This week I'm off coffee. Just to do it, to prove to myself that I can. And also as a sort of experiment to find out if I feel different without coffee. I've heard conflicting reports about how coffee affects your health; one week it's good for cognitive function and a fantastic source of antioxidants, and the next it's bad for your blood sugar levels and overall cardiovascular health. So to cut through all the hype, I just want to know how my body will respond to a Week Without Coffee (WWC).
My WWC begins right now. And just to clarify, the no coffee rule includes decaf. I've never thought of decaf as 'real' or 'actual' coffee, but if I'm gonna do this, I'm gonna do this - you know? Do I expect it to be easy? No, not really. Especially this weekend when I'm sitting at home doing my normal coffee-drinking activities like sitting on the porch, eating breakfast, reading or catching up on email. But I'm not such a coffee hound that I expect to have any tangible symptoms of withdrawal other than the uncontrollable urge to stare longingly at my coffeemaker. Time will tell.
Thursday, May 21, 2009
For My Sister, the Superhuman
On October 4, 2007, my sister AL suffered a stroke due to a ruptured and bleeding cerebral AVM . Several months later, I sat down and wrote about the experience. My main intention was self-therapy through writing, but I also wanted to record some of the details that I thought (correctly) would fade from my memory over time.
Recently, AL and I had a conversation about how little she remembers from the weeks after the stroke (click here for a little more fore/background). I told her about my AVM journal and she was keen, so today I'm going to mail her a copy of it in its entirety. Please read on for a couple of excerpts.
In this first one, I had just learned from my dad that AL had both an active bleed and a large clot in her brain. When I first got off the phone with him, I was confused and on the verge of hyperventilating, but then my colleague, C (well, former colleague - I worked in NYC at the time) talked me down, and together we decided that I should leave work that very minute to begin the five-hour drive to my sister in Syracuse.
I was scheduled to go to China for work in three days. I took everything I would need for the trip with me (except, I realized later, my airplane ticket), because I was hopeful; a lot could change in three days. Maybe my sister would be fine in three days. C walked me to the bus terminal carrying more than her fair share and proclaiming herself my Sherpa. I was on the 2:50 bus and K left work early to meet me at the park & ride. We were on our way up to Syracuse. The ride was long and I hated it. It sort of reminded me of the time when, shortly after graduation from college, when I was working as a waitress and uninsured, I had a cyst on my head the size of a golf ball (and growing!) and K drove me from Washington, DC all the way up to Utica to see the only doctor who would remove the cyst for free - my mother. The pain had gotten to the point where I was rotating doses of Vicodin with three Advils, taking one of the other every two to three hours and I was still in a world of hurt. The present drive to Syracuse was throbbing painfully in a completely different way.
We finally arrived after about five hours in the car and were instructed by my dad to go to the fourth floor Pediatric ICU. She was stable. We walked into the PICU, and hers was the bed straight ahead and just to the left. I went to her and she looked just as she had last time I saw her. I gave her a hug and that's when she said "I love you" and I felt an immense rush of relief. She was fine! But then I noticed she wasn't really talking at all, or hardly at all. Everyone was talking to each other around her, but her participation consisted only of non-verbal communication: facial expressions, gestures, hand squeezes. A resident came over to give her a little test. He pointed to his watch and asked her if she knew what it was. She shrugged and laughed at herself and shrugged. Next, he asked her to name the object he had in his hand - a pen. She said "sand," in a rising tone, like it was a question and you could see in her eyes that she knew she was totally wrong. It was just this look of 'What am I saying?!' The resident asked her if she knew what the object was for / what people do with it, and she answered by making a writing motion with her right hand.
There were more questions, but I didn't hear them - I felt like I was going to lose it. This was bad. First, I turned around and took a few steps away from the bed because I didn't want AL to see me. Then I involuntarily sunk down to my knees. K was on me like a flash, squatting in front of me - "are you ok?" - and I was trying not to cry because I didn't want others to hear me. The situation was bad enough for AL, my parents, my brother and my other sister. Maybe because I wasn't allowing myself to cry, I was having trouble breathing. A split-second later, over K's shoulder, I saw a nurse coming towards me with a needle and asking if I was all right. I stood up, grabbed K's arm, and walked - almost ran - out of the PICU. Safely in the hallway, I let out my tears and my shock and my disbelief. That initial moment of realization - sometimes it takes seeing with your own eyes to grasp the gravity of a situation - passed, and soon I was able to pull myself together. The next two weeks were a complete roller coaster for my entire family - we dared to hope; we let the doctors' bleak assessments get to us; we knew she would be ok; we were faced with the fact that she would need long, hard, dangerous brain surgery; we saw the other brave kids in the PICU fighting their own battles with death or near-death; we watched AL laugh hysterically one day and fall into depression the next; we prayed (very rare, at least for me); we were insomniacs; we wondered when they would ever operate on her...
And here's an excerpt about AL's surgery, which finally took place on October 18. The two weeks leading up to it were hectic in the way that hospital life is. The doctors kept pushing the surgery back because they wanted all the blood to have a chance to settle down, dissolve, whatever.
When they wheeled her into surgery, my mom went with her in a crazy blue suit - half astronaut, half Pillsbury doughboy. AL went to sleep and mom joined all of us in the waiting room for what we expected to be a five or six-hour wait. We took turns going down to the cafeteria, getting coffee, walking around. Books and TV (mostly nothing on, but I do remember watching Ellen) to pass the time. There was a Mickey Mouse phone in the waiting room, and we were told we would get a call when the surgery was over or almost over. So, at the six-hour mark, every time the phone would ring, we would be all excited. But it was for other parents, other families... and the hours dragged on. About ten hours after she had been put under, we finally got our call. AL was being stitched up - the head neurosurgeon came in and told us that it had gone well, though longer than expected. There were literally thousands of vessels attached to the AVM, which they had needed to remove. So, for each of those tiny vessels, they had to cut, tie off, burn - very time consuming. We were all glad to know it was over and she was safe. They wheeled her through the hall and back up to the PICU. As we caught a glimpse of her, we could see that her eyes were both under the bandage that was holding her head together. She looked like hell, but she was alive.
The next day I got to really appreciate the shape she was in. She looked (and, I'm sure, felt) like she had gone a few rounds with a heavyweight and not been allowed to fight back and then been hit by a bus. The incision went from the center of the top of her forehead to the back of her head and then curved around and up behind her left ear. The skin and muscle had been pulled back and a piece of skull literally sawed out before the surgeons could even start working on her brain. Her left eye was huge, purple and swollen shut; her right eye was a slit. They had to increase her self-dosed morphine, which was the only medication they had found to effectively control her pre-surgery pain, to one full gram per push of the button. She was allowed one push every seven minutes. On top of all the pain, she was still having immense trouble communicating, and the morphine made her foggy and out-of-it. She was extremely irritable. She would want something described as "that" and would get frustrated when we didn't know what she meant. It was hard to bear and yet, the absurdity of the situation got the better of me at one point, and I just had to laugh. I brushed past the curtain surrounding her bed and laughed softly but hysterically next to the nurses' station. One of the nurses came up behind me - she must have assumed I was crying, which was fair enough, because there was a fair bit of that going on - and she asked if I was ok. I turned, smiled and said, "My sister is being such a bitch!" The nurse giggled and we agreed that the bitchiness was a good sign. Later, my sister would share that she really thought she wanted to die then. To just let go would have been such a welcome release. But she was feisty, and she fought on.
Don't worry, reader - it ends happily! And it makes me so proud to go back and think about all that AL's been through and how we handled it together as a family. She is an amazing girl and I am in awe of her. AL was fourteen years old at the time of her stroke. The only phrase she was able to articulate on that day - "I love you" - is indicative of her personality. She has faced mortality and depression in ways someone her age shouldn't have to. And almost the whole time, she's been able to laugh at herself.
Recently, AL and I had a conversation about how little she remembers from the weeks after the stroke (click here for a little more fore/background). I told her about my AVM journal and she was keen, so today I'm going to mail her a copy of it in its entirety. Please read on for a couple of excerpts.
In this first one, I had just learned from my dad that AL had both an active bleed and a large clot in her brain. When I first got off the phone with him, I was confused and on the verge of hyperventilating, but then my colleague, C (well, former colleague - I worked in NYC at the time) talked me down, and together we decided that I should leave work that very minute to begin the five-hour drive to my sister in Syracuse.
I was scheduled to go to China for work in three days. I took everything I would need for the trip with me (except, I realized later, my airplane ticket), because I was hopeful; a lot could change in three days. Maybe my sister would be fine in three days. C walked me to the bus terminal carrying more than her fair share and proclaiming herself my Sherpa. I was on the 2:50 bus and K left work early to meet me at the park & ride. We were on our way up to Syracuse. The ride was long and I hated it. It sort of reminded me of the time when, shortly after graduation from college, when I was working as a waitress and uninsured, I had a cyst on my head the size of a golf ball (and growing!) and K drove me from Washington, DC all the way up to Utica to see the only doctor who would remove the cyst for free - my mother. The pain had gotten to the point where I was rotating doses of Vicodin with three Advils, taking one of the other every two to three hours and I was still in a world of hurt. The present drive to Syracuse was throbbing painfully in a completely different way.
We finally arrived after about five hours in the car and were instructed by my dad to go to the fourth floor Pediatric ICU. She was stable. We walked into the PICU, and hers was the bed straight ahead and just to the left. I went to her and she looked just as she had last time I saw her. I gave her a hug and that's when she said "I love you" and I felt an immense rush of relief. She was fine! But then I noticed she wasn't really talking at all, or hardly at all. Everyone was talking to each other around her, but her participation consisted only of non-verbal communication: facial expressions, gestures, hand squeezes. A resident came over to give her a little test. He pointed to his watch and asked her if she knew what it was. She shrugged and laughed at herself and shrugged. Next, he asked her to name the object he had in his hand - a pen. She said "sand," in a rising tone, like it was a question and you could see in her eyes that she knew she was totally wrong. It was just this look of 'What am I saying?!' The resident asked her if she knew what the object was for / what people do with it, and she answered by making a writing motion with her right hand.
There were more questions, but I didn't hear them - I felt like I was going to lose it. This was bad. First, I turned around and took a few steps away from the bed because I didn't want AL to see me. Then I involuntarily sunk down to my knees. K was on me like a flash, squatting in front of me - "are you ok?" - and I was trying not to cry because I didn't want others to hear me. The situation was bad enough for AL, my parents, my brother and my other sister. Maybe because I wasn't allowing myself to cry, I was having trouble breathing. A split-second later, over K's shoulder, I saw a nurse coming towards me with a needle and asking if I was all right. I stood up, grabbed K's arm, and walked - almost ran - out of the PICU. Safely in the hallway, I let out my tears and my shock and my disbelief. That initial moment of realization - sometimes it takes seeing with your own eyes to grasp the gravity of a situation - passed, and soon I was able to pull myself together. The next two weeks were a complete roller coaster for my entire family - we dared to hope; we let the doctors' bleak assessments get to us; we knew she would be ok; we were faced with the fact that she would need long, hard, dangerous brain surgery; we saw the other brave kids in the PICU fighting their own battles with death or near-death; we watched AL laugh hysterically one day and fall into depression the next; we prayed (very rare, at least for me); we were insomniacs; we wondered when they would ever operate on her...
And here's an excerpt about AL's surgery, which finally took place on October 18. The two weeks leading up to it were hectic in the way that hospital life is. The doctors kept pushing the surgery back because they wanted all the blood to have a chance to settle down, dissolve, whatever.
When they wheeled her into surgery, my mom went with her in a crazy blue suit - half astronaut, half Pillsbury doughboy. AL went to sleep and mom joined all of us in the waiting room for what we expected to be a five or six-hour wait. We took turns going down to the cafeteria, getting coffee, walking around. Books and TV (mostly nothing on, but I do remember watching Ellen) to pass the time. There was a Mickey Mouse phone in the waiting room, and we were told we would get a call when the surgery was over or almost over. So, at the six-hour mark, every time the phone would ring, we would be all excited. But it was for other parents, other families... and the hours dragged on. About ten hours after she had been put under, we finally got our call. AL was being stitched up - the head neurosurgeon came in and told us that it had gone well, though longer than expected. There were literally thousands of vessels attached to the AVM, which they had needed to remove. So, for each of those tiny vessels, they had to cut, tie off, burn - very time consuming. We were all glad to know it was over and she was safe. They wheeled her through the hall and back up to the PICU. As we caught a glimpse of her, we could see that her eyes were both under the bandage that was holding her head together. She looked like hell, but she was alive.
The next day I got to really appreciate the shape she was in. She looked (and, I'm sure, felt) like she had gone a few rounds with a heavyweight and not been allowed to fight back and then been hit by a bus. The incision went from the center of the top of her forehead to the back of her head and then curved around and up behind her left ear. The skin and muscle had been pulled back and a piece of skull literally sawed out before the surgeons could even start working on her brain. Her left eye was huge, purple and swollen shut; her right eye was a slit. They had to increase her self-dosed morphine, which was the only medication they had found to effectively control her pre-surgery pain, to one full gram per push of the button. She was allowed one push every seven minutes. On top of all the pain, she was still having immense trouble communicating, and the morphine made her foggy and out-of-it. She was extremely irritable. She would want something described as "that" and would get frustrated when we didn't know what she meant. It was hard to bear and yet, the absurdity of the situation got the better of me at one point, and I just had to laugh. I brushed past the curtain surrounding her bed and laughed softly but hysterically next to the nurses' station. One of the nurses came up behind me - she must have assumed I was crying, which was fair enough, because there was a fair bit of that going on - and she asked if I was ok. I turned, smiled and said, "My sister is being such a bitch!" The nurse giggled and we agreed that the bitchiness was a good sign. Later, my sister would share that she really thought she wanted to die then. To just let go would have been such a welcome release. But she was feisty, and she fought on.
Don't worry, reader - it ends happily! And it makes me so proud to go back and think about all that AL's been through and how we handled it together as a family. She is an amazing girl and I am in awe of her. AL was fourteen years old at the time of her stroke. The only phrase she was able to articulate on that day - "I love you" - is indicative of her personality. She has faced mortality and depression in ways someone her age shouldn't have to. And almost the whole time, she's been able to laugh at herself.
Sunday, May 17, 2009
Blood Draw Adventures and AVM Journal
Doctor's appointment update: I survived! After procrastinating for literally years (read about it here and here), I found a doctor and had myself checked out. My visit was uneventful until I went to the lab to have my blood drawn. The tech asked me if I've ever fainted during a blood draw and I said no, I haven't had this done in a loooong time, but it shouldn't be a problem.
Her first try was painful. I wasn't looking at the site, but it felt like she was digging a ditch with that needle. I felt a sudden rush of heat and said, "Woah, I don't feel so good." Apparently I was having what is referred to in medical jargon as a vasovagal response - what a terrible feeling! I was given an ice pack and told to lay my head down. Several minutes later, the tech asked if I wanted to go ahead with the blood draw. "Absolutely," I replied. "I don't want to have to fast again!" So we went to find an exam room where I could lie down. She tried again, in my other arm this time, and everything went smoothly.
At the end of the visit, I felt fantastic. As I skipped along to my office, I texted my little sister AL: "Just had my blood drawn and almost fainted. Guess I'm not as tough as you." AL suffered a stroke in October of 2007 due to a cerebral arteriovenous malformation (AVM) - this picture at right gives an idea of what an AVM might look like. In the months that followed, she had to undergo invasive brain surgery and countless medical tests and procedures. After all that, I figured that a blood draw would be a piece of cake for her.
AL texted me back: "Oh but you are! I would probably faint too." Hmmm. Later that day, she called me. She said that she doesn't really remember having her blood drawn in the hospital, even though it was done several times. The combination of intense pain, heavy and sustained medication, and brain bleeding have left her with huge gaps in her memory of the time she spent in the hospital.
AL said that it's weird to have these long stretches of time that she doesn't remember. Or she'll remember one random thing that happened, but not know exactly when it happened or what came before and after. This made me think of the time I sat down and wrote a journal about her (our) ordeal. I thought she might like to see it. Maybe it would help fill in one or two of the gaps. AL seemed excited about this. Thus, my assignment for the week became digging up the journal and sending her a copy. I'm looking forward to a re-read (writing the journal was so therapeutic at the time), and hope my sister finds something in there worth knowing, too.
Her first try was painful. I wasn't looking at the site, but it felt like she was digging a ditch with that needle. I felt a sudden rush of heat and said, "Woah, I don't feel so good." Apparently I was having what is referred to in medical jargon as a vasovagal response - what a terrible feeling! I was given an ice pack and told to lay my head down. Several minutes later, the tech asked if I wanted to go ahead with the blood draw. "Absolutely," I replied. "I don't want to have to fast again!" So we went to find an exam room where I could lie down. She tried again, in my other arm this time, and everything went smoothly.
At the end of the visit, I felt fantastic. As I skipped along to my office, I texted my little sister AL: "Just had my blood drawn and almost fainted. Guess I'm not as tough as you." AL suffered a stroke in October of 2007 due to a cerebral arteriovenous malformation (AVM) - this picture at right gives an idea of what an AVM might look like. In the months that followed, she had to undergo invasive brain surgery and countless medical tests and procedures. After all that, I figured that a blood draw would be a piece of cake for her.AL texted me back: "Oh but you are! I would probably faint too." Hmmm. Later that day, she called me. She said that she doesn't really remember having her blood drawn in the hospital, even though it was done several times. The combination of intense pain, heavy and sustained medication, and brain bleeding have left her with huge gaps in her memory of the time she spent in the hospital.
AL said that it's weird to have these long stretches of time that she doesn't remember. Or she'll remember one random thing that happened, but not know exactly when it happened or what came before and after. This made me think of the time I sat down and wrote a journal about her (our) ordeal. I thought she might like to see it. Maybe it would help fill in one or two of the gaps. AL seemed excited about this. Thus, my assignment for the week became digging up the journal and sending her a copy. I'm looking forward to a re-read (writing the journal was so therapeutic at the time), and hope my sister finds something in there worth knowing, too.
Monday, April 27, 2009
Procrastination Fever
I took a big step today. I successfully made a doctor's appointment. I answered several questions about my current health, insurance plan, and reasons for making the appointment. The whole thing took about ten minutes. I feel great.
Is it sad yet sort of hilarious that it's taken me so long to take this leap? Absolutely. What is my deal? I have no idea. I gave myself the assignment of scheduling a doctor's appointment last Monday. Last Monday. My goal is to blog about doing something new every week, writing a before post and an after post. And this week, with pretty much the quickest, most tedious task possible, it took me the entire seven days. Except last Monday to today is actually a week plus a day, so make that eight. And if it weren't for me knowing that the few people who read my blog were going to hold me accountable for my doctor's appointment promise, I'm sure it would have taken me even longer still.
In my defense (if I dare), I did spend a chunk of my week in Florida on business. God forbid that I place my phone call to Northwestern Memorial Hospital from Orlando instead of Chicago, though I'm not sure what difference it actually makes. No, I think I should stop making excuses and go ahead and acknowledge my general tendency for extreme procrastination when it comes to unpleasant, seemingly non-urgent tasks. Certain things simply need to be done, so I should just put my head down and go through with it.
Experiences like the one I had today are encouraging. The person I was dealing with was very kind and helpful - the process was painless. Perhaps I should use this momentum to tackle one of the many other tasks I've been putting off for way too long, but I'd rather just lay back and enjoy the small victory.
Is it sad yet sort of hilarious that it's taken me so long to take this leap? Absolutely. What is my deal? I have no idea. I gave myself the assignment of scheduling a doctor's appointment last Monday. Last Monday. My goal is to blog about doing something new every week, writing a before post and an after post. And this week, with pretty much the quickest, most tedious task possible, it took me the entire seven days. Except last Monday to today is actually a week plus a day, so make that eight. And if it weren't for me knowing that the few people who read my blog were going to hold me accountable for my doctor's appointment promise, I'm sure it would have taken me even longer still.
In my defense (if I dare), I did spend a chunk of my week in Florida on business. God forbid that I place my phone call to Northwestern Memorial Hospital from Orlando instead of Chicago, though I'm not sure what difference it actually makes. No, I think I should stop making excuses and go ahead and acknowledge my general tendency for extreme procrastination when it comes to unpleasant, seemingly non-urgent tasks. Certain things simply need to be done, so I should just put my head down and go through with it.Experiences like the one I had today are encouraging. The person I was dealing with was very kind and helpful - the process was painless. Perhaps I should use this momentum to tackle one of the many other tasks I've been putting off for way too long, but I'd rather just lay back and enjoy the small victory.
Monday, April 20, 2009
Dr. Strangelove
This is just embarrassing, but here it goes: I have never made a doctor's appointment. Dentist and optometrist appointments, yes, but regular-doctor go-get-a-physical, hit-my-knee-with-the-little-hammer-thingy, no.It's weird. I mean, I think of myself as a pretty responsible person, and on top of that, taking care of myself is very important to me. And I do it fairly well when it comes to diet, exercise, etc. I know that regular visits with a doctor would be beneficial, but they just haven't been part of my routine. There must be some sort of elusive mental block keeping me from scheduling a check-up.
I don't think I am afraid of doctors. Sure, they've been known to be the bearers of bad news at times, but on the other hand, there could be some disease slowly taking hold of me right now and I wouldn't know because I've been too lazy to go and get some basic blood-work done. Modern medicine is not infallible, but theoretically I'm a big fan.
What's really awful is how hypocritical I've been about this. Last summer, K had abdominal pain so severe that he asked me to take him to the emergency room. As he was getting checked out, I called my mom (also a doctor) and complained that K doesn't take care of himself properly - doesn't go to the doctor, never exercises, doesn't really watch what he eats - and now the poop might be hitting the fan. Well, as it turned out, K's appendix was about to burst; so his choices were not a contributing factor, and I felt like a big ass.
Since then, I've been all over K to schedule regular doctor's appointments, first to check in on the status of the massive incision from his surgery, and later just to make sure he is healthy all-around. I need him to keep ticking for quite a while longer. Meanwhile, I've been toddling along without any serious thought to the fact that I haven't gotten the green light from a physician since the last millennium, when I was still on my parents' insurance.
It is a strange love that has allowed me to stay oblivious to my own hypocrisy. So K, if you read this, I'm sorry. This week I will make a doctor's appointment. It will be a small achievement but a significant one. I can't wait to get an officially clean bill of health. I'll be brand new.
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