So, what do you do when you have a breast biopsy, and they refuse to give you the results directly, but send them to your primary care provider.
And you know your primary care provider is out on maternity leave?
You wait the 48 hours they say it will take, and you call your doctor's office and say: "Hey! There's a biopsy coming in and how do I find out what it says?" Because I'm sure as heck not waiting until maternity leave is over, am I right?
"Oh, well." Says the receptionist. "If there is something wrong, somebody will call you." Yes, she actually said this. "No news is good news."
No, I don't think so. How long am I supposed to wait to find out that I'm not going to get a call?
Fortunately, a very thoughtful and understanding nurse gave me a call. "I just didn't want you to have to wait all weekend until someone could call you on Monday, just to find out everything is normal."
So--YAY! Nothing to worry about over the weekend! Nothing abnormal, nothing questionable, no further medical intervention necessary. Now I am free to whine about how itchy my bandage is.
Showing posts with label Health. Show all posts
Showing posts with label Health. Show all posts
Friday, September 19, 2008
Monday, February 11, 2008
I'll Be Seeing You!
Wow--long time without posting. . .I didn't realize. I have been posting over at the Evil Book Blog, so I haven't been entirely silent.
I got my eyes checked last week. I thought I was having some trouble seeing, but it's only been about six months since my last check. Should I go again so soon? What would the insurance company think?
And then I realized that these were MY EYES I was talking about, and who cares what the insurance company says--I can't see, so I'd better go get them checked.
Turns out I was right--BIG change in one eye, both needed stronger lenses. I really hadn't been able to see!
Would I be a good candidate for Lasik? Not so much, it turns out, with that much change in my prescription. Am I doomed to juggling five pairs of glasses the rest of my life? Regular (bifocal) glasses, prescirption sunglasses, regular sunglasses, reading glasses and contacts?
Why no! The doctor told me jovially, Which wasn't a mode that suited him, as he was younger than I am, so "avuncular" is not really working for him. Anyway--he had a possible solution! It's called "monocular vision:" I wear the proper contact in my right eye, so I can see distances, and then I undercorrect the vision in my left eye, so I can still read!
So, that was last Wednesday, and I've been trying this monocular vision thing. Some people can't do it--it requires training your brain to only read the input from one eye at a time, and it makes some people seasick to even try it.
I can do it, it turns out--but I'm not sure that I really like it.
It's fine for days where I putter around the house--doing laundry, working on the computer, running errands. Thing that are generally happening in the middle distance. Yes, it's nice to be able to be able to read the directions on a package without having to stop and find my glasses, and I don't have to wear two pair of glasses on my head all the time I'm out (readers and sunglasses) or else find myself inside a store still wearing my prescription sunglasses, so I still can' t see.
But I have already noticed that there are times that it just doesn't work for me: Some things at a distance (like road signs) don't become clear as quickly as I'd like, and I don't get the advantage of both eyes to focus. Similarly, when I'm working with close and small items--reading, or making jewelry or something like that, I can only see with the one eye, and so everything is a little bit blurry because my right eye can't stop trying to focus.
Yesterday, I kind of got the hang of the mental part, and I realized how flat things looked. There is a richness to the world that disappears when viewed with only one eye.
Besides, if I do this monocular thing, I can add even more glasses to my collection: readers that correct only my right eye, with plain glass on the left, and driving glasses that would correct the left eye and be plain glass on the right. Plus, then I could have sunglasses made the same way, which would leave me with what. . .
EIGHT PAIRS OF GLASSES TO KEEP STRAIGHT?
We need to rethink this plan.
I got my eyes checked last week. I thought I was having some trouble seeing, but it's only been about six months since my last check. Should I go again so soon? What would the insurance company think?
And then I realized that these were MY EYES I was talking about, and who cares what the insurance company says--I can't see, so I'd better go get them checked.
Turns out I was right--BIG change in one eye, both needed stronger lenses. I really hadn't been able to see!
Would I be a good candidate for Lasik? Not so much, it turns out, with that much change in my prescription. Am I doomed to juggling five pairs of glasses the rest of my life? Regular (bifocal) glasses, prescirption sunglasses, regular sunglasses, reading glasses and contacts?
Why no! The doctor told me jovially, Which wasn't a mode that suited him, as he was younger than I am, so "avuncular" is not really working for him. Anyway--he had a possible solution! It's called "monocular vision:" I wear the proper contact in my right eye, so I can see distances, and then I undercorrect the vision in my left eye, so I can still read!
So, that was last Wednesday, and I've been trying this monocular vision thing. Some people can't do it--it requires training your brain to only read the input from one eye at a time, and it makes some people seasick to even try it.
I can do it, it turns out--but I'm not sure that I really like it.
It's fine for days where I putter around the house--doing laundry, working on the computer, running errands. Thing that are generally happening in the middle distance. Yes, it's nice to be able to be able to read the directions on a package without having to stop and find my glasses, and I don't have to wear two pair of glasses on my head all the time I'm out (readers and sunglasses) or else find myself inside a store still wearing my prescription sunglasses, so I still can' t see.
But I have already noticed that there are times that it just doesn't work for me: Some things at a distance (like road signs) don't become clear as quickly as I'd like, and I don't get the advantage of both eyes to focus. Similarly, when I'm working with close and small items--reading, or making jewelry or something like that, I can only see with the one eye, and so everything is a little bit blurry because my right eye can't stop trying to focus.
Yesterday, I kind of got the hang of the mental part, and I realized how flat things looked. There is a richness to the world that disappears when viewed with only one eye.
Besides, if I do this monocular thing, I can add even more glasses to my collection: readers that correct only my right eye, with plain glass on the left, and driving glasses that would correct the left eye and be plain glass on the right. Plus, then I could have sunglasses made the same way, which would leave me with what. . .
EIGHT PAIRS OF GLASSES TO KEEP STRAIGHT?
We need to rethink this plan.
Tuesday, September 11, 2007
More Musings on Health and Sleep
Okay, I lied. It's not just the fact that I've lost six pounds that keeps me going. It's that, when you think about it, needing 12 hours of sleep a day makes life...well...boring.
I mean, the sleep is great, and it feels good to feel good and not like I'm swimming through oatmeal while wearing cement underwear or anything. But really, if one needs 12 hours of sleep out of every 24, that leaves the remaining 12 to be:
Boring.
Really boring.
Really really mind-numbingly, soul harrowingly boring.
Because, squeezing in 12 hours of sleep where one can means sleeping at night plus sleeping while the rest of the family is off at work, or school, or athletics, or whatever. Which means that, for instance today, I had only two hours and 40 minutes before I had to pick up the kids from after school sports practice. In that two hours and 40 minutes I had the following list of exciting activities that took up the entire time:
. . .and all the boring minutae of daily life. Because some things just have to be done when they have to be done, and all the fun stuff and the free time and the stuff I want to do just to be me? That has to wait.
Sure, there are probably lots and lots of people who are organized, and high energy, and have their kids routine's regimented and who have the ability to either multi-task, or delegate, or simply to switch gears rapidly in order to take profitable advantage of the small bits of time that accumulate between the chores. And I wish I could do this. I really do. But so far, after a few decades of trying, I'm beginning to suspect that I have to concede defeat.
Sure, while the sweet potatoes are cooking, and while the turkey is broiling, I managed to post here, which is the sort of thing that keeps everything from being completely hopeless. But there is so much else I want to be able to go and do, and I could do it--
--except for this sleeping thing. Because I can't just cut back on my sleep to gain the extra time.
Not getting enough sleep, for me, means that everything I have to do is just that much harder, and takes just that much longer, and is just that much more boring and depressing, and I don't get any more done anyway.
It isn't fair, and it isn't nice, and it's why it feels like what I am fighting for is my life. Not merely my continued existence, but for all the things that make life worth living and not just the daily grind.
So, that is why I was so incredibly disheartened with all the delay in this condition getting improved: I'm fighting for Life.
I mean, the sleep is great, and it feels good to feel good and not like I'm swimming through oatmeal while wearing cement underwear or anything. But really, if one needs 12 hours of sleep out of every 24, that leaves the remaining 12 to be:
Boring.
Really boring.
Really really mind-numbingly, soul harrowingly boring.
Because, squeezing in 12 hours of sleep where one can means sleeping at night plus sleeping while the rest of the family is off at work, or school, or athletics, or whatever. Which means that, for instance today, I had only two hours and 40 minutes before I had to pick up the kids from after school sports practice. In that two hours and 40 minutes I had the following list of exciting activities that took up the entire time:
- Walk the dog.
- Make lunch.
- Pick up a prescription from the doctor's office.
- Fill said prescription.
- Go to the grocery store.
. . .and all the boring minutae of daily life. Because some things just have to be done when they have to be done, and all the fun stuff and the free time and the stuff I want to do just to be me? That has to wait.
Sure, there are probably lots and lots of people who are organized, and high energy, and have their kids routine's regimented and who have the ability to either multi-task, or delegate, or simply to switch gears rapidly in order to take profitable advantage of the small bits of time that accumulate between the chores. And I wish I could do this. I really do. But so far, after a few decades of trying, I'm beginning to suspect that I have to concede defeat.
Sure, while the sweet potatoes are cooking, and while the turkey is broiling, I managed to post here, which is the sort of thing that keeps everything from being completely hopeless. But there is so much else I want to be able to go and do, and I could do it--
--except for this sleeping thing. Because I can't just cut back on my sleep to gain the extra time.
Not getting enough sleep, for me, means that everything I have to do is just that much harder, and takes just that much longer, and is just that much more boring and depressing, and I don't get any more done anyway.
It isn't fair, and it isn't nice, and it's why it feels like what I am fighting for is my life. Not merely my continued existence, but for all the things that make life worth living and not just the daily grind.
So, that is why I was so incredibly disheartened with all the delay in this condition getting improved: I'm fighting for Life.
In Which I Wallow In Self Pity
Don't say you haven't been warned. This is a pity party here, and since it's my party, I'll cry if I want to.
Yup, that's right--we're going to be talking CPAP again.
Previously, we learned that the machine I had was not, in fact, working at all, and was exchanged (after FAR too long) for one that actually varied its air pressure. Not willing to be made a chump in the same way AGAIN, I took the new Damn Machine into be checked after about 10 days.
Yes, the thing was working. Yes, it was recording data. In fact, the data was so clear that the technician grabbed the doctor out of his discussion of fantasy football and showed him the data. And he decided that it would work to switch to a non-variable setting machine. The fixed setting would be 13, which coincidentally? was exactly half way through the range of variable settings I had before.
Not to bemoan lost opportunities, or anything, BUT--the first doctor who read the results of my sleep study IN JUNE had recommended a fixed pressure of 12, which would have avoided all these months of non-data collecting, and non-variable variable pressure, and would have gotten me to almost the exact place I am now after THREE DAMN MONTHS.
This is where it is a good thing that the antidepressants work, or we'd be looking at some serious scar tissue right now, and that makes wearing a watch so irritating.
Anyway, things should be looking up now, right. Because:
When I did wake up, naturally, the dog bounded over, greeting my wakefullness a bit more frantically than usual. Because it was bloody 1:50 in the afternoon! Poor animal's bladder was knocking, because I managed to sleep over twelve hours before I woke up.
I hope that is just because I am still sleep deprived, because 12 hours of sleep is hard to fit in, and not any improvement over what I had before all this nonsense. It's just not very encouraging at all. I mean, why should I struggle with the Damn Machine and everything just to need as much sleep as I needed before? I can only hope that as time goes on, I need less sleep, and that the sleep is more restful for me, and that it reverses all the ill health effects that sleep deprivation can cause. Like weight gain, risk of stroke, heart diseases, etc.
The only entry over on the plus side of the entry at this point, is that I have managed to lose 6 pounds. Is it related? It's too early to tell, but it's enough to keep me going for now.
Yup, that's right--we're going to be talking CPAP again.
Previously, we learned that the machine I had was not, in fact, working at all, and was exchanged (after FAR too long) for one that actually varied its air pressure. Not willing to be made a chump in the same way AGAIN, I took the new Damn Machine into be checked after about 10 days.
Yes, the thing was working. Yes, it was recording data. In fact, the data was so clear that the technician grabbed the doctor out of his discussion of fantasy football and showed him the data. And he decided that it would work to switch to a non-variable setting machine. The fixed setting would be 13, which coincidentally? was exactly half way through the range of variable settings I had before.
Not to bemoan lost opportunities, or anything, BUT--the first doctor who read the results of my sleep study IN JUNE had recommended a fixed pressure of 12, which would have avoided all these months of non-data collecting, and non-variable variable pressure, and would have gotten me to almost the exact place I am now after THREE DAMN MONTHS.
This is where it is a good thing that the antidepressants work, or we'd be looking at some serious scar tissue right now, and that makes wearing a watch so irritating.
Anyway, things should be looking up now, right. Because:
- I'm home with a new machine that is supposed to provide the exact right level of air pressure for me.
- We got a cold front, so the nights are cool and comfortable--perfect sleeping weather.
- Last night was the first night I felt that I was actually sleeping without fighting the mask and trying to get comfortable.
When I did wake up, naturally, the dog bounded over, greeting my wakefullness a bit more frantically than usual. Because it was bloody 1:50 in the afternoon! Poor animal's bladder was knocking, because I managed to sleep over twelve hours before I woke up.
I hope that is just because I am still sleep deprived, because 12 hours of sleep is hard to fit in, and not any improvement over what I had before all this nonsense. It's just not very encouraging at all. I mean, why should I struggle with the Damn Machine and everything just to need as much sleep as I needed before? I can only hope that as time goes on, I need less sleep, and that the sleep is more restful for me, and that it reverses all the ill health effects that sleep deprivation can cause. Like weight gain, risk of stroke, heart diseases, etc.
The only entry over on the plus side of the entry at this point, is that I have managed to lose 6 pounds. Is it related? It's too early to tell, but it's enough to keep me going for now.
Wednesday, August 29, 2007
More Idle CPAP Commentary--Certified Curse Free!
CPAP tech: So, which mask are you using?
Me: The nasal pillow one.
CPAP tech: Well, at least you have the one that makes you look like a scuba diver.
Does it? You make the call.
CPAP tech also mentioned that her husband had a CPAP machine. "And he was so committed to it, he superglued it to the night stand. Then he lost a bunch of weight and didn't need it any more, so we had to buy a new night stand."
Me: The nasal pillow one.
CPAP tech: Well, at least you have the one that makes you look like a scuba diver.
Does it? You make the call.
CPAP tech also mentioned that her husband had a CPAP machine. "And he was so committed to it, he superglued it to the night stand. Then he lost a bunch of weight and didn't need it any more, so we had to buy a new night stand."
Tuesday, August 28, 2007
In Which I Vent And Use Many Curse Words
Oh my god. I am so pissed. This is the post I started, planning to post it yesterday:
Then, I used the damn machine last night. Sure, I only had about 3.5 hours of sleep the night before, so I expected to be able to sleep all night. But when I woke up and took off the damn machine?
Air. The air that was coming out of the mask was like a jet engine compared to what I had been getting before. Because guess what? It wasn't just the data capture that was broken on the old machine, IT WAS THE WHOLE DAMN MACHINE.
It looks like the "automatically adjustable pressure" wasn't adjusting at all. AT ALL. DAMN IT.
I mean, really. Look, I'm usually Pollyfuckinganna about stuff like this, all "well, it's going to be better now," and "it is darkest before the dawn" and shit, but give me a fucking break! I've had this damn machine for something like two and a half months, and IT WASN'T EVEN WORKING!!!
Look, I'm so frustrated, I'm using multiple exclamation points!! And lots of swear words!! <insert Charlie Brown type howl of outrage here> No wonder I wasn't seeing any difference--there was no difference, except for the annoyance and inconvenience of the mask. It certainly wasn't helping me to sleep or to sleep better. And I lost TWO MONTHS--TWO WHOLE MONTHS of my life which I won't get back which were spent trying and trying to get some benefit out of something that was NEVER GOING TO WORK because it was BROKEN and NOBODY even figured it out!
I excuse myself from the list of people who SHOULD have figured it out, because what the hell do I know? I'm the one who's all screwed up from sleep deprivation; higher cognitive functioning is not to be expected.
<heavy sigh>
SAME SONG, THIRD VERSE
So, back to the doctors' office with the C-CRAP machine today. Yup--the machine was broken. No data at all. No record of use, of air pressure settings, no way to actually make this project be productive.
So, the technician gave me a new machine, and I get to try AGAIN to generate some sleep data AGAIN so I can go back to the doctor AGAIN with the damn machine.
You know, it's particularly discouraging because I'm not seeing any improvement at all. I still need about 11 hours of sleep a night, except when I wake up in the middle of the night and can't get back to sleep. You know, 3:30 in the morning is really dark?
Then, I used the damn machine last night. Sure, I only had about 3.5 hours of sleep the night before, so I expected to be able to sleep all night. But when I woke up and took off the damn machine?
Air. The air that was coming out of the mask was like a jet engine compared to what I had been getting before. Because guess what? It wasn't just the data capture that was broken on the old machine, IT WAS THE WHOLE DAMN MACHINE.
It looks like the "automatically adjustable pressure" wasn't adjusting at all. AT ALL. DAMN IT.
I mean, really. Look, I'm usually Pollyfuckinganna about stuff like this, all "well, it's going to be better now," and "it is darkest before the dawn" and shit, but give me a fucking break! I've had this damn machine for something like two and a half months, and IT WASN'T EVEN WORKING!!!
Look, I'm so frustrated, I'm using multiple exclamation points!! And lots of swear words!! <insert Charlie Brown type howl of outrage here> No wonder I wasn't seeing any difference--there was no difference, except for the annoyance and inconvenience of the mask. It certainly wasn't helping me to sleep or to sleep better. And I lost TWO MONTHS--TWO WHOLE MONTHS of my life which I won't get back which were spent trying and trying to get some benefit out of something that was NEVER GOING TO WORK because it was BROKEN and NOBODY even figured it out!
I excuse myself from the list of people who SHOULD have figured it out, because what the hell do I know? I'm the one who's all screwed up from sleep deprivation; higher cognitive functioning is not to be expected.
<heavy sigh>
Saturday, August 18, 2007
So! How's The Sleeping?
The sleep struggle continues. I got the new, smaller, lighter mask, which is now adjusted to not slip around so much, but is still a damn heavy plastic thing that smashes my lip against my teeth and is still a long tube attached to a machine that interferes with my ability to sleep comfortably.
However this does answer a question. To wit: if the CPAP machine is 85%+ effective, why do people turn to the other, much much less effective alternatives--like incredibly invasive surgery, or oral appliances?
It's because NO ONE CAN SLEEP WITH THE DAMN CPAP MACHINE.
Sorry for the shouting, but it was unavoidable. Incidentally, see how closely CPAP looks like CRAP? Coincidence? I don't think so.
So, last week I went back to the doctor to check on the progress. The machine I'm using is self-adjusting, which means that the amount of air pressure changes throughout the night. So part of the night I'm sucking to get enough air, and part of the night I'm probably getting too much. The machine keeps data about all that, which gets printed off at the doctor's for their evaluation.
So, I took my machine in, and guess what. No, you won't guess. Because the DAMN MACHINE FAILED TO RECORD ANY INFORMATION for the last three weeks, and EVEN ERASED some of the information from before that.
So, I'm going to wrestle with this for another few weeks until we get that information re-generated. Plus, I'm still tired, and still sleeping about 9.5 hours every day. The only person really getting any benefit from this whole thing (besides the makers of the DAMN MACHINE) is Mr. Sweetie, who doesn't have to listen to me snore all night.
Not that he has ever EVER complained. But I think he's getting better sleep now. Too bad I'm not.
However this does answer a question. To wit: if the CPAP machine is 85%+ effective, why do people turn to the other, much much less effective alternatives--like incredibly invasive surgery, or oral appliances?
It's because NO ONE CAN SLEEP WITH THE DAMN CPAP MACHINE.
Sorry for the shouting, but it was unavoidable. Incidentally, see how closely CPAP looks like CRAP? Coincidence? I don't think so.
So, last week I went back to the doctor to check on the progress. The machine I'm using is self-adjusting, which means that the amount of air pressure changes throughout the night. So part of the night I'm sucking to get enough air, and part of the night I'm probably getting too much. The machine keeps data about all that, which gets printed off at the doctor's for their evaluation.
So, I took my machine in, and guess what. No, you won't guess. Because the DAMN MACHINE FAILED TO RECORD ANY INFORMATION for the last three weeks, and EVEN ERASED some of the information from before that.
So, I'm going to wrestle with this for another few weeks until we get that information re-generated. Plus, I'm still tired, and still sleeping about 9.5 hours every day. The only person really getting any benefit from this whole thing (besides the makers of the DAMN MACHINE) is Mr. Sweetie, who doesn't have to listen to me snore all night.
Not that he has ever EVER complained. But I think he's getting better sleep now. Too bad I'm not.
Sunday, August 05, 2007
When The Cure IS The Disease
So I saw the doctor at the lung clinic recently, about the sleep apnea and the usefulness of the machine. And--this is so embarassing--but I cried. I cried! Because really, I am trying so hard, and it is just not working.
I mean, I have this thing called the "Comfort" mask, which is a lot like something you would use to portray an elephant for an extended time, and not only is it heavy on my face, with a tendency to weigh down on my teeth, but it also is toxic. I wear it and I get a burning sensation on my skin--it feels like something out of Harry Potter, like it's a horcrux on my face or Delores Umbridge has assigned it to me for detention.
As I am sure I have groused about before, when I called in for some help, I got some very snotty lady who insisted that it wasn't happening, and I should just clean it and wear it looser. So I did. And not only did it not help the burning thing, but once it was looser, it just wobbled all over my face and made it hard to sleep.
This was confirmed when I went in for my appointment, and the electronic data showed that after I loosened the damn thing, it leaked like crazy and really was no help at all. So, remind me why I was using this thing? Oh yes, because I was not sleeping well. And with it? Surprise! Still not sleeping well!
My god. I mean, what do you do when the "cure" causes the exact same problems as the disease? I'll tell you what I do--I go to the doctor's office and cry. Yes, I am apparently as emotionally resilient as a toddler.
So, the doctor was sympathetic to my complaints, and I went in to meet with another technician who offered me a different mask--called something like a "nostril pillow," which only touches my face under my nose, and has two small bud-like projections to direct air into my nose. So, I tried that the first night. And guess what?!? That's right--it was even worse for sleeping than the other mask! Why? Because anytime I moved to my side, I would push the "pillow" into my pillow, and the whole thing would move sideways on my face. Which wasn't a problem for my face, but the little buds in my nostrils? Ouch! Let's just point out that there isn't much flexibility in cartilage, okay? I ended up sleeping with my neck muscles tensed so my face didn't touch my pillow.
Restful it was not. Even better was the fact that I was a good little DoBee and took the damn thing apart to wash it after the first night--and an important piece that held the whole thing together got lost. I think the dog might have gotten it. So, after one bad night, I didn't even have it any more.
So, back to the "comfort" mask, which I swathed in sterile gauze and cloth first aid tape. Some of it still got onto my skin, however, and I had a red mark along my cheek for the entire day. After three days of this nonsense, I was about on the point of tears again--I wore the damn thing, I suffered the painful reactions, and I STILL needed 9 or 10 hours of sleep each night. Plus, Mr. Sweetie noticed I was still snoring.
Yesterday, right before bed, I found the missing piece to the "nostril pillow," and apologized to the dog, who was innocent. I tried it again, and found it was less heinous than the first night I used it. Once again, I needed nine and a half hours of sleep before I woke up, and managed to start yawning before I had been awake an entire 12 hours!
You know, I read somewhere that Bill Clinton only slept about 4 hours a night while he was president. I can't even imagine that--how did he keep from walking into walls, and falling asleep at his own press conferences?
Anyway, for those few of you reading this for actual medical content, I can only say that I have another appointment in the near future, where the data should show some indication of the amount of air pressure that I need, and that a constant flow of air (rather than the variable amount I'm getting now as we attempt to calibrate my breathing) will make this whole thing more useful. Right now, my goal is to get to this next appointment with enough data to actually be useful, and to not cry!
I mean, I have this thing called the "Comfort" mask, which is a lot like something you would use to portray an elephant for an extended time, and not only is it heavy on my face, with a tendency to weigh down on my teeth, but it also is toxic. I wear it and I get a burning sensation on my skin--it feels like something out of Harry Potter, like it's a horcrux on my face or Delores Umbridge has assigned it to me for detention.
As I am sure I have groused about before, when I called in for some help, I got some very snotty lady who insisted that it wasn't happening, and I should just clean it and wear it looser. So I did. And not only did it not help the burning thing, but once it was looser, it just wobbled all over my face and made it hard to sleep.
This was confirmed when I went in for my appointment, and the electronic data showed that after I loosened the damn thing, it leaked like crazy and really was no help at all. So, remind me why I was using this thing? Oh yes, because I was not sleeping well. And with it? Surprise! Still not sleeping well!
My god. I mean, what do you do when the "cure" causes the exact same problems as the disease? I'll tell you what I do--I go to the doctor's office and cry. Yes, I am apparently as emotionally resilient as a toddler.
So, the doctor was sympathetic to my complaints, and I went in to meet with another technician who offered me a different mask--called something like a "nostril pillow," which only touches my face under my nose, and has two small bud-like projections to direct air into my nose. So, I tried that the first night. And guess what?!? That's right--it was even worse for sleeping than the other mask! Why? Because anytime I moved to my side, I would push the "pillow" into my pillow, and the whole thing would move sideways on my face. Which wasn't a problem for my face, but the little buds in my nostrils? Ouch! Let's just point out that there isn't much flexibility in cartilage, okay? I ended up sleeping with my neck muscles tensed so my face didn't touch my pillow.
Restful it was not. Even better was the fact that I was a good little DoBee and took the damn thing apart to wash it after the first night--and an important piece that held the whole thing together got lost. I think the dog might have gotten it. So, after one bad night, I didn't even have it any more.
So, back to the "comfort" mask, which I swathed in sterile gauze and cloth first aid tape. Some of it still got onto my skin, however, and I had a red mark along my cheek for the entire day. After three days of this nonsense, I was about on the point of tears again--I wore the damn thing, I suffered the painful reactions, and I STILL needed 9 or 10 hours of sleep each night. Plus, Mr. Sweetie noticed I was still snoring.
Yesterday, right before bed, I found the missing piece to the "nostril pillow," and apologized to the dog, who was innocent. I tried it again, and found it was less heinous than the first night I used it. Once again, I needed nine and a half hours of sleep before I woke up, and managed to start yawning before I had been awake an entire 12 hours!
You know, I read somewhere that Bill Clinton only slept about 4 hours a night while he was president. I can't even imagine that--how did he keep from walking into walls, and falling asleep at his own press conferences?
Anyway, for those few of you reading this for actual medical content, I can only say that I have another appointment in the near future, where the data should show some indication of the amount of air pressure that I need, and that a constant flow of air (rather than the variable amount I'm getting now as we attempt to calibrate my breathing) will make this whole thing more useful. Right now, my goal is to get to this next appointment with enough data to actually be useful, and to not cry!
Monday, July 02, 2007
There Is No Panacea
This is sad news. There should be a panacea. For everything. A pan-panacea, if you will.
The keep-me-breathing-while-I-sleep machine is not a panacea. There were a couple of days when it looked like it might be. I was sleeping for 6 hours, and waking up! Refreshed! Even my sinuses were clear! And I thought, maybe this could be it. Sure, I look like a Doughboy up against mustard gas in WWI when I go to sleep, but maybe it's worth it.
Because, if I could sleep well and only need six hours a night--why, that would free up so much time! I could wake up, and have enough energy to go to the gym! I could finally lose the weight I gained after my kids were born! I wouldn't have to stay up so late out of a desperate need for a few consecutive minutes of mental clarity! The price of gas would go down! The Shia and Sunni would go to dinner at the Kurds, and Iraq would be as Eden! I could think of something to have for dinner! Caffeine free Diet Pepsi(TM) would run from the water taps!
Alas, it was not to be. I started having a reaction to the material that touches my face. I'd call it a "latex allergy" but I have been informed (and rather snottily, I might add) that there IS no latex in the damn thing. Okay, so tell that to the spots on my face that are raw and painful!
Maybe I had the mask on too tightly? Okay, so I loosened the straps. And spent that night feeling like I had a 50 pound elephant's trunk strapped to my face. The sucker had its own momentum whenever I rolled over, and tried to take my face with it.
So, boil some water, pour it over the mask and let the water cool. Some help, and the raw spot disappeared, but there is still some unpleasant reaction between that mask and my face.
Then, I find I'm still not getting enough sleep. I wake up after seven hours of sleep, and I'm still tired. I still need another 2-4 hours of sleep--which maybe isn't fair, since then I don't use The Machine, but still eats into a lot of my time. And I'm yawning through the day. Again.
I have an appointment in three weeks to check the data The Machine is gathering. And I think I need to get another mask fitting appointment, as I spend about 15minutes trying to get the thing onto my face so it doesn't weigh so heavily on my upper lip.
Yup. It's official. I'm a whiner.
The keep-me-breathing-while-I-sleep machine is not a panacea. There were a couple of days when it looked like it might be. I was sleeping for 6 hours, and waking up! Refreshed! Even my sinuses were clear! And I thought, maybe this could be it. Sure, I look like a Doughboy up against mustard gas in WWI when I go to sleep, but maybe it's worth it.
Because, if I could sleep well and only need six hours a night--why, that would free up so much time! I could wake up, and have enough energy to go to the gym! I could finally lose the weight I gained after my kids were born! I wouldn't have to stay up so late out of a desperate need for a few consecutive minutes of mental clarity! The price of gas would go down! The Shia and Sunni would go to dinner at the Kurds, and Iraq would be as Eden! I could think of something to have for dinner! Caffeine free Diet Pepsi(TM) would run from the water taps!
Alas, it was not to be. I started having a reaction to the material that touches my face. I'd call it a "latex allergy" but I have been informed (and rather snottily, I might add) that there IS no latex in the damn thing. Okay, so tell that to the spots on my face that are raw and painful!
Maybe I had the mask on too tightly? Okay, so I loosened the straps. And spent that night feeling like I had a 50 pound elephant's trunk strapped to my face. The sucker had its own momentum whenever I rolled over, and tried to take my face with it.
So, boil some water, pour it over the mask and let the water cool. Some help, and the raw spot disappeared, but there is still some unpleasant reaction between that mask and my face.
Then, I find I'm still not getting enough sleep. I wake up after seven hours of sleep, and I'm still tired. I still need another 2-4 hours of sleep--which maybe isn't fair, since then I don't use The Machine, but still eats into a lot of my time. And I'm yawning through the day. Again.
I have an appointment in three weeks to check the data The Machine is gathering. And I think I need to get another mask fitting appointment, as I spend about 15minutes trying to get the thing onto my face so it doesn't weigh so heavily on my upper lip.
Yup. It's official. I'm a whiner.
Tuesday, June 12, 2007
Just Call Me Cleo
So, I was scheduled to have a follow up to my sleep study--in which a doctor would go over all the tests that I subjected myself to, and interpret them, and then conclude that I need to sleep with a mask over my face and with a machine next to my bed for the rest of my life. Can you tell that I'm not excited about this?
Anyway, that appointment was supposed to be today. And since I'm an erratic sleeper, I even had to set an alarm to make certain that I didn't sleep through it. But an hour before my appointment, I got a call: one of the doctors was ill, and the others have to all cover patients and hospital rounds, etc. etc., and not only is my appointment today canceled, I can't get rescheduled until they work something out with who is going to be where, and when.
Which I am just as glad about, I guess. It allows me a few more days to live in denial about my condition and the likely solution to it. Sure, I've had totally messed up sleep, and I've lost a disproportionate amount of my life to the many hours I need to sleep, and when I wake up I'm still groggy and kind of messed up. . .
Okay, so I guess I do need to do something about this. But I hate the headgear and the whole "I'm going to look horrible and not at all cute and not at all attractive and I should just go sleep in another room and spare Mr. Sweetie the pain" is really weighing on me.
Do you think if I add a tiara, I might not mind it so much?
Anyway, that appointment was supposed to be today. And since I'm an erratic sleeper, I even had to set an alarm to make certain that I didn't sleep through it. But an hour before my appointment, I got a call: one of the doctors was ill, and the others have to all cover patients and hospital rounds, etc. etc., and not only is my appointment today canceled, I can't get rescheduled until they work something out with who is going to be where, and when.
Which I am just as glad about, I guess. It allows me a few more days to live in denial about my condition and the likely solution to it. Sure, I've had totally messed up sleep, and I've lost a disproportionate amount of my life to the many hours I need to sleep, and when I wake up I'm still groggy and kind of messed up. . .
Okay, so I guess I do need to do something about this. But I hate the headgear and the whole "I'm going to look horrible and not at all cute and not at all attractive and I should just go sleep in another room and spare Mr. Sweetie the pain" is really weighing on me.
Do you think if I add a tiara, I might not mind it so much?
Saturday, June 09, 2007
Sleeping for Medicine
So, after a consultation with a lung specialist, it appears that I am a likely victim of sleep apnea--the condition where one's muscles become so relaxed during sleep that the tongue blocks the breathing passages, and one actually stops breathing, often several times a night. Based on my reported sleep habits, many complaints that I snore, and the apparently small size of my airways, I was recommended for a sleep study.
This is because sleep apnea can really only be diagnosed by watching the patient sleep. And since doctors aren't going to stay up all night just to watch someone else sleep, I got to go to a "Sleep Disorders Center" and get hooked up to all kinds of wires, machinery and cameras, all of which generate data about how I sleep so that the doctors can look at my situation.
So, my appointment was last night at 9 p.m. I was to bring pajamas, toiletries, and my insurance card. Once I was checked in (paperwork! Whoo hoo!) and a name bracelet was stuck on my wrist, I was shown to a sleeping room. At first glance, it looked like a hotel room: highly figured and rather corporately unattractive bedspread, forgettable art overhead, armoire, television, full bath and nightstand. Okay, so the bed was a dinky little single bed--not the size most adults are used to sleeping in, as far as I'm concerned. And there were no curtains, plus some other things were just not quite right. I was instructed to change into my sleepwear, and then I was hooked up.
Sure, I'm an optimistic person. I try to mentally convert medical procedures into spa services. . .as much as is possible. This wasn't really possible. The lack of any light but glaring overhead fluorescents was one characteristic that I couldn't overcome, and the total lack of soothing music and aroma therapy was another. I did ask the technician about it. Don't think I didn't! He laughed, but he thought it was a good idea. He also thought the bed was a bit small. Don't you think some mattress company would donate some decent beds, just to have their name associated with a sleep clinic? If you saw an ad for some mattress that promised better sleep, and said "Used in sleep clinics across the nation" wouldn't you make a point of checking it out?
Anyway, the hooking up process took a good 40 minutes, or maybe longer. At least as long as a good spa service should be. First the technician (Dave--and I refrained from using my HAL voice when using his name) measured my head in three different dimensions, in order to place six nodes in specific places on my skull. I got one by each eye, one behind each ear, several on my chin (I'm not sure why--I'm sure he explained it, but I don't remember. "I'm sorry, DAVE."). I also had two just below my collarbones to check my heartbeat, one on each calf to check for leg motion, and two breathing bands--one across my chest and one across my abdomen. Then the whole mass of wires was attached to a 4"x6" console. The whole process involved several swipes of alcohol cleansers to wipe off any body oil to make sure the adhesives stayed attached all night, and gobs of some sort of gummy goo (I think this is a medical term) were placed in my hair to keep the skull nodes in place.
By the end, I was feeling like I had a major dreadlock 'do going on at the back of my head. Once I was hooked up to all these wires, I had to climb into bed and get an oxygen monitor taped to my right index finger, and then a breathing tube attached below my nose to measure the air coming out of my nostrils. This was possibly the worst part of the whole mess, because it had that unmistakeable scent of newly opened, certified sterile, medical plastic, which stunk up into my nose all night.
"Okay, so when you are ready to go to sleep, you just let me know. I've got a microphone in here and I can hear you when you call." So, I tried to read myself into sleepiness, which isn't easy in a strange room, with a too small bed, where the only light is a screaming overhead fluorescent. . .but I tried. By about 10:15 I was ready to lie down. . .and then we had to do more testing.
"Lie on your back with your hands on your sides. Now with just your eyes, look left and right. Now with just your eyes, look up and down. Take a deep breath and hold it for 10 seconds. Now move your right foot up and down. . .and now your left foot. Take a few deep breaths. . .good. Good night."
GOOD NIGHT, DAVE.
Let me tell you, it isn't easy to fall asleep. And it felt like I was awake for at least 40 minutes until I got any kind of sleep at all, and even at that I was jolting awake quite a bit. Still, I was asleep when Dave came in to ask me to sleep on my back, because he startled me awake. Okay, sleep on back to test the most classic form of apnea. Yeah. Sleep. On my back. Yeah. Right. . .
"Okay, you're doing great. Now we are going to hook you up to the machine." This machine is the CPAP machine: Continuous Positive Air Pressure. You wear a small triangular nose cone attached to an enormous headgear to keep it in place as you sleep. The machine pumps out a continuous stream of gentle air to force your airways to stay open. It isn't too hard to breathe with it, but I gotta tell you it's impossible to talk. The stinky nose thing was untaped, but not removed because it was already tangled up in all the other wires. The CPAP went on, and I was allowed to try to go back to sleep.
Listen--I was already wide awake from the startle reflex, and adding the odd feeling and the weight of the CPAP thing didn't make me any more comfortable. So what did I need? MORE wires, I guess. I plugged in my iPod and listened to a book on tape. Actually, even though I had listened to this particular book before. . .recently. . .I found I wasn't nodding off. I finally gave up and tried to get to sleep without it. I tried to do it while on my back, so Dave wouldn't come back and wake me up. . .AGAIN. . .but it didn't work. Actually, the cone weighed rather heavily on my teeth, squishing my lip against my teeth. But I STILL had to sleep on my back, after Dave came in and woke me up AGAIN.
It wasn't very restful, and the CPAP had a weird effect on my breathing. I felt like it was forcing my sinuses open, and also that because the air was going in, I hardly had to breathe at all. In fact, if you asked me my opinion, I'd say I did less breathing with the machine than without it. I also thought I did less sleeping too, but I guess the data will show if that's true. I was asleep when Dave came in to say it was 6 a.m., and time to go home. I woke up so quickly, though, every time, which is quite unlike my usual sleep, and so until proven otherwise, I believe I didn't sleep as deeply as I usually do.
I was going to just get up, throw on some clothes and come home to shower, but once Dave ripped off all the adhesive and tape (boy, am I glad I shaved my legs!), there were still gobs of that crap in my hair, and residual stickiness around my neck and I just couldn't stand it! I filled out the final paperwork, took a shower, and came home to go back to bed.
I go in to see the doctor on Tuesday, who will read the results of my tests, as well as Dave's report and that of the other sleep disorder specialists on staff. Apparently, although there are several options for sleep apnea, only the CPAP is actually consistently effective. Which I have some trouble with. I mean, I spent years in high school, faithfully wearing the god awful headgear for my orthodonture, and trust me, the CPAP skull cap is worse. It just isn't how I see myself, wearing this big ugly appliance-type headgear and attached by the nose to a bedside machine. I mean, really, did Sleeping Beauty wear a CPAP? How about Meredith Grey, even when she was in a coma after nearly drowning in Puget Sound? NO! They didn't! As for me, it's hard to get over the non-aesthetics of it to confront the medical reality. Apnea is dangerous--it leads to all kinds of serious medical conditions, like increased risk of stroke, high blood pressure, etc. etc.
But it's hard to get over the feeling that it's like being on life support, and I really didn't plan to be on life support until I was a whole lot older, and had a couple of hips replaced, and perhaps had senile dementia, so I wouldn't notice.
We will see what the doctor says, but the odds are generally lined up for the CPAP, and then it's up to me to get over my issues about it. After all, I'm not the one bothered by my snoring, right?
This is because sleep apnea can really only be diagnosed by watching the patient sleep. And since doctors aren't going to stay up all night just to watch someone else sleep, I got to go to a "Sleep Disorders Center" and get hooked up to all kinds of wires, machinery and cameras, all of which generate data about how I sleep so that the doctors can look at my situation.
So, my appointment was last night at 9 p.m. I was to bring pajamas, toiletries, and my insurance card. Once I was checked in (paperwork! Whoo hoo!) and a name bracelet was stuck on my wrist, I was shown to a sleeping room. At first glance, it looked like a hotel room: highly figured and rather corporately unattractive bedspread, forgettable art overhead, armoire, television, full bath and nightstand. Okay, so the bed was a dinky little single bed--not the size most adults are used to sleeping in, as far as I'm concerned. And there were no curtains, plus some other things were just not quite right. I was instructed to change into my sleepwear, and then I was hooked up.
Sure, I'm an optimistic person. I try to mentally convert medical procedures into spa services. . .as much as is possible. This wasn't really possible. The lack of any light but glaring overhead fluorescents was one characteristic that I couldn't overcome, and the total lack of soothing music and aroma therapy was another. I did ask the technician about it. Don't think I didn't! He laughed, but he thought it was a good idea. He also thought the bed was a bit small. Don't you think some mattress company would donate some decent beds, just to have their name associated with a sleep clinic? If you saw an ad for some mattress that promised better sleep, and said "Used in sleep clinics across the nation" wouldn't you make a point of checking it out?
Anyway, the hooking up process took a good 40 minutes, or maybe longer. At least as long as a good spa service should be. First the technician (Dave--and I refrained from using my HAL voice when using his name) measured my head in three different dimensions, in order to place six nodes in specific places on my skull. I got one by each eye, one behind each ear, several on my chin (I'm not sure why--I'm sure he explained it, but I don't remember. "I'm sorry, DAVE."). I also had two just below my collarbones to check my heartbeat, one on each calf to check for leg motion, and two breathing bands--one across my chest and one across my abdomen. Then the whole mass of wires was attached to a 4"x6" console. The whole process involved several swipes of alcohol cleansers to wipe off any body oil to make sure the adhesives stayed attached all night, and gobs of some sort of gummy goo (I think this is a medical term) were placed in my hair to keep the skull nodes in place.
By the end, I was feeling like I had a major dreadlock 'do going on at the back of my head. Once I was hooked up to all these wires, I had to climb into bed and get an oxygen monitor taped to my right index finger, and then a breathing tube attached below my nose to measure the air coming out of my nostrils. This was possibly the worst part of the whole mess, because it had that unmistakeable scent of newly opened, certified sterile, medical plastic, which stunk up into my nose all night.
"Okay, so when you are ready to go to sleep, you just let me know. I've got a microphone in here and I can hear you when you call." So, I tried to read myself into sleepiness, which isn't easy in a strange room, with a too small bed, where the only light is a screaming overhead fluorescent. . .but I tried. By about 10:15 I was ready to lie down. . .and then we had to do more testing.
"Lie on your back with your hands on your sides. Now with just your eyes, look left and right. Now with just your eyes, look up and down. Take a deep breath and hold it for 10 seconds. Now move your right foot up and down. . .and now your left foot. Take a few deep breaths. . .good. Good night."
GOOD NIGHT, DAVE.
Let me tell you, it isn't easy to fall asleep. And it felt like I was awake for at least 40 minutes until I got any kind of sleep at all, and even at that I was jolting awake quite a bit. Still, I was asleep when Dave came in to ask me to sleep on my back, because he startled me awake. Okay, sleep on back to test the most classic form of apnea. Yeah. Sleep. On my back. Yeah. Right. . .
"Okay, you're doing great. Now we are going to hook you up to the machine." This machine is the CPAP machine: Continuous Positive Air Pressure. You wear a small triangular nose cone attached to an enormous headgear to keep it in place as you sleep. The machine pumps out a continuous stream of gentle air to force your airways to stay open. It isn't too hard to breathe with it, but I gotta tell you it's impossible to talk. The stinky nose thing was untaped, but not removed because it was already tangled up in all the other wires. The CPAP went on, and I was allowed to try to go back to sleep.
Listen--I was already wide awake from the startle reflex, and adding the odd feeling and the weight of the CPAP thing didn't make me any more comfortable. So what did I need? MORE wires, I guess. I plugged in my iPod and listened to a book on tape. Actually, even though I had listened to this particular book before. . .recently. . .I found I wasn't nodding off. I finally gave up and tried to get to sleep without it. I tried to do it while on my back, so Dave wouldn't come back and wake me up. . .AGAIN. . .but it didn't work. Actually, the cone weighed rather heavily on my teeth, squishing my lip against my teeth. But I STILL had to sleep on my back, after Dave came in and woke me up AGAIN.
It wasn't very restful, and the CPAP had a weird effect on my breathing. I felt like it was forcing my sinuses open, and also that because the air was going in, I hardly had to breathe at all. In fact, if you asked me my opinion, I'd say I did less breathing with the machine than without it. I also thought I did less sleeping too, but I guess the data will show if that's true. I was asleep when Dave came in to say it was 6 a.m., and time to go home. I woke up so quickly, though, every time, which is quite unlike my usual sleep, and so until proven otherwise, I believe I didn't sleep as deeply as I usually do.
I was going to just get up, throw on some clothes and come home to shower, but once Dave ripped off all the adhesive and tape (boy, am I glad I shaved my legs!), there were still gobs of that crap in my hair, and residual stickiness around my neck and I just couldn't stand it! I filled out the final paperwork, took a shower, and came home to go back to bed.
I go in to see the doctor on Tuesday, who will read the results of my tests, as well as Dave's report and that of the other sleep disorder specialists on staff. Apparently, although there are several options for sleep apnea, only the CPAP is actually consistently effective. Which I have some trouble with. I mean, I spent years in high school, faithfully wearing the god awful headgear for my orthodonture, and trust me, the CPAP skull cap is worse. It just isn't how I see myself, wearing this big ugly appliance-type headgear and attached by the nose to a bedside machine. I mean, really, did Sleeping Beauty wear a CPAP? How about Meredith Grey, even when she was in a coma after nearly drowning in Puget Sound? NO! They didn't! As for me, it's hard to get over the non-aesthetics of it to confront the medical reality. Apnea is dangerous--it leads to all kinds of serious medical conditions, like increased risk of stroke, high blood pressure, etc. etc.
But it's hard to get over the feeling that it's like being on life support, and I really didn't plan to be on life support until I was a whole lot older, and had a couple of hips replaced, and perhaps had senile dementia, so I wouldn't notice.
We will see what the doctor says, but the odds are generally lined up for the CPAP, and then it's up to me to get over my issues about it. After all, I'm not the one bothered by my snoring, right?
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