Hey everybody: I know it's been a little while, but have no fear, I have not (as Crazed Mom has worried about) been a part of the blog-apocalypse or anything like that. Nope, it's just regular, end of summer, everybody has their vacation at one time, trying to cram experiences into the last few weeks before school starts mayhem.
I told y'all we'd be having some visitors, and boy howdy*, did we have visitors. My sister and her boys came for about a week, and Lil Girl and her brother decided to stay with us most of that week too, because their cousins were here. Which is awesome and wonderful, and I'm so happy that they (mostly) get along because there is such a wide range of ages (8 months to 14 years), and that could be bad news, but (mostly) works for them. One of my most cherished memories of my childhood summers is the week in August that my Virginia cousins would visit... I can remember crying every time they left and almost holding my breath every summer till it was time for them to come back. I'm so glad that my niece and nephews can have the same kind of connection (and, since Sister S's boys only live in New Hampshire, get to have more than one visit a year).
But that's not to say that it didn't take a lot out of me, and really made me realize that I am still - three months post-op - definitely still in a recovery phase. I just didn't have (what passes for) my normal level of stamina or strength, and, by the middle of the week, I was getting lots of concerned questions from both Sister S and Oldest Nephew. They kept asking if I was mad, which is the question I tend to get asked a lot if the pain is showing up on my face. I had to keep reassuring them that I wasn't mad (because I wasn't), just really, really sore. Since I have had 15 years of practice in covering up how badly I am feeling (particularly around the kids), it has to be pretty horrible for that much to be leaking out. I also don't necessarily think it was bad for it to be showing - Sister S, and her oldest boy, to some extent - still don't really "get" the whole chronic illness thing, mostly because they only briefly lived with me while I was ill. They don't quite understand how bad it can get, because I mostly hide it when they are here, so as not to put a damper on the visit. Which is possible on a weekend visit, or a day trip, but for a whole week? Never gonna happen. Eventually it catches up with me, and in this case, it was definitely sooner rather than later.
While they were here, we managed to get most of the whole immediate family crew together (minus Sister K who went to Montana with her boyfriend) for a little trek to a local old timey amusement park. It's a place that holds a lot of memories for most of us, as Nana (5th grade teacher extraordinaire) used to take her classes there on a field trip every year. She and the other chaperones would bring beach chairs and park under a giant willow tree, while the kids ran across the parking lot to the arcade with the warnings of "Absolutely no one goes to the beach!" and "If you don't come when I blow this whistle, we leave without you and you can explain to your parents why you didn't make the bus" ringing in their ears.
This trip we all had a great time, we took lots of pictures, and I will talk about it some more in a later picture filled post. But it was a really special day.
Added to that, I got a visit from College Roommate/ Best Friend, and her two little girls, who I haven't seen since before Christmas, because of various illnesses (on my part) and busy social calendars (on hers). We had a very nice visit, and definitely won't go so long this time in between. And then one of those fore mentioned Virginia cousins - who now lives in Maine - came down with her mom, husband and little boy and we had lunch together at Grandmother's house, with her kids and the kids my heart says are part mine running around in the yard while we - the grownups!?! - watched from the porch. It was pretty awesome, although I still really, really don't feel like a grownup.
So that's where I've been: visiting with sisters and brothers and nieces and nephews and best friends and their kids and Virginia cousins that now live in Maine, and taking field trips down memory lane. As exhausting, punishing and painful as it has been physically, it was definitely worth it. Although I am still recuperating - from both the summer and the stupid surgery - I'm glad that we got a chance to get everybody together, and that so many people I've been missing managed to make their way to me this summer.
Plus, now I have a ton of photos to edit, and some of them I actually love, so it's bonuses all around.
*I have no idea where the Southern accent came from: I apologize for the "boy howdy."
Showing posts with label Surgery. Show all posts
Showing posts with label Surgery. Show all posts
Thursday, August 26, 2010
Thursday, June 24, 2010
33 days post op,
and I am starting to finally feel like I might actually be a human-type person again. I'm not springing into cartwheels, or feeling the magical special cure that I had, deep down, obviously, been hoping for, but I no longer feel as if someone decided to whack me in the face with a mallet, while at the same time letting some sort of giant lizard claw its way down my throat. You can imagine that this is a bit of a relief.
I managed to catch, in these 33 days, at least one sinus infection (either inadequately quashed the first time and capable of rebounding, or a party-bug who invited a friend over; impossible to tell) and a case of thrush that made me want to rip my tongue out and use sandpaper on it. Thankfully, the thrush has cleared up, and the infection(s) are on their way out as well. (She says, trying not to jinx herself this time.)
So I'm going to talk a little bit about a couple of things now, and I'm going to warn you that the very first thing I'm going to talk about is exceedingly gross. As in "Are you really about to tell the internet that...?" level gross. But here is where I talk about things that I can't discuss in real life/make my family understand, and so, you lovelies have a bit of forewarning that you might want to skip item #1.
Item #1: Every week since my surgery (and twice the first week immediately following the surgery), I have had to go to the ENT surgeon for a check in. During these check ins, he pokes at my face a little bit, looks up my nose, down my throat and in my ears - in short, all the things you expect the ENT to do. And then things take a dramatic turn for the worse, and I break out in the kind of flop sweat usually only experienced when the dentist turns around with that huge needle in his hand. Luckily, the ENT does not start poking me with needles, but, rather unluckily, he instead decides that now is the time to insert things up my nose.
UP my NOSE, people. My very tender, and much abused nose. First, he sprays a little numbing stuff, which is about as useful as tap water would be, and then he uses a long thin strip of cotton ball, doused in decongestants, and his looooooong metal pliers, and he stuffs the cotton ball up my nostrils. He leaves it there for a minute and disappears behind me, while the medicinal tasting decongestant drips out of my nose and down the back of my throat.
The first time this happened, I was a little bit shocked: I assumed that when he said he was going to use a decongestant, that he meant a nasal spray. And that was going to be bad enough, because my nose was already swollen and sore, and now he was going to spray stuff up there? Bah. So I was sitting there all shocked and drippy, waiting for him to take this gross stuff out of my nose when, all of the sudden, there's an unexpected noise behind me. A mechanical noise, a little hum that is entirely out of place. And then things go way downhill, way too fast.
Because the mechanical humming noise is coming from some sort of vacuum, not unlike an elongated, metal version of the doohickey that the dentist uses to suck spit out of your mouth during a cleaning, and the ENT is telling me that this damn thing is going up my nose to "clean out what's left."
Are you freaking kidding me??? This was not mentioned during the numerous pre-op discussions we had about surgery and aftercare; This was not mentioned in my aftercare instructions; This was not mentioned anytime during the previous 15 minutes I've been sitting here talking to you: NOW you are telling me, as you approach me with that goddamn thing, that you're going to suck stuff out of my sinuses? I am so not on board with this.
But, what choice did I have, really, since this is part of the after care - I'm going to go through all the pain of the surgery, and then have it be a waste because I didn't do the necessary follow up? I don't think so. How bad can it be, really?
Oh, it can be really, really bad. *I should put a disclaimer here that this was my experience, and the whole sucking out of sinuses might not be a big deal for other people: I can't really say. Except for another guy who was having the same surgery/procedure done on my first post-op visit who yelled really loudly from inside the room while I was waiting for my appointment, so he obviously didn't enjoy it either (if only I had known why he was yelling before I went in...). I can only say, that for me? It was a gigantic deal. Not just because I was already in a lot of pain, although I was, but because, to me, it feels like drowning.
The sensation of not being able to breathe through your noise is bad enough, but you add in the forced pressure of that little vacuum, and the fact that you can feel it not just in your sinuses and nose, but in the back of your throat? And it adds up to a completely overwhelming and painful experience. I cried, the first time, and (Mum told me later) was also, from the waiting room, quite audible in my distress. I cried the second and third times too, and I'm not even the tiniest bit embarrassed by that fact. (It was a little bit less traumatic the last two times, thankfully.)
It hurt, and I am already hurting enough.
But it was the panic that it caused me that was most distressing... the doctor actually told me to "breathe through your mouth" (as if I had any other options) "or you're going to have a panic attack". That is because you are cutting off my air supply, and my body, for some reason thinks this is a bad idea. He also appeared shocked that I would find this so upsetting, only adding to my impression of him as completely out of touch with reality ("7-10 days and you'll be good as new!"; "No patient has ever had a sinus infection so soon, post-op: are you sure that's what it is?"; "You should chew more gum to help stretch those muscles, did I forget to tell you that?").
The only good news is that I now don't have to go back for another month, baring additional issues, and that time, he may not even have to use the vacuum. Fingers crossed! End of totally disgusting and barbaric Item #1.
Item #2 - I have missed out on a lot of things in the course of the 33 days: a cousin's wedding (which apparently included much celebrating), my birthday, a college reunion I wasn't going to go to anyways (but I would've liked to make the my-girls dinner pre-party), Lil Girl's end of school celebration, No Longer Youngest Nephew's school report (which I have never been invited to before :( ), and more than a bit of family drama that I'm still trying to catch up with. Everybody in my family had issues during this period, and I feel like I am a page or two behind on the stories, which is a feeling I truly hate. I also feel like this lag in my understanding of things has caused new drama, which I have to figure out how to fix, but can't till my brain is back at full power, which sucks. This is one of the things I tried to factor into my decision to have the surgery - knowing I would be so far behind/out of the loop, and trying to make it be ok, but I absolutely hate not being there for people when they need me (and we can talk about why I don't expect people to show up for me when I need them some other time, thank you very much). It has been hard, playing catch up, apologizing for the gaps and lapses, the gaffs and digs I've delivered unknowingly. Or trying to, at least.
But at the same time, I'm trying to be realistic about this - I had the right to do something that, hopefully, is going to lead to a real improvement in my health. It wasn't selfish to do this, even if I don't get the outcome I wanted. Or, if it is selfish, only in a good way. This is one of the things I have decided to work on, about myself - that I don't cut myself enough slack about important things. Yes, it is vital to be someone that my family and friends can depend on, and it stinks when my health issues get in the way of that. But that doesn't mean it's not something that people should try to understand, and that doesn't mean it's something I should feel badly for (at least, not excessively so). So, I'm working on that. It is much harder done than said.
Item #3 I would just like to state, for the record, that I am through thinking about my weight. Because I ate nothing but soup broth and mashed potatoes, slush, bananas, and jello for, let's say 27 days, discounting the first two days (when I could only eat slush), and the last four (when I've been expanding into other, actually needs to be chewed types of food). And I think I gained weight, to be honest with you. So if I can't lose weight on three weeks of vegetarian, non-chewable mush, then I'm just not going to lose weight. So I better figure out how to like the size I am right now.
I think that's about it for now, before this post turns into a novel. I'll be back pretty soon (certainly more frequently now), and we'll talk about something completely different, won't that be nice? Please also know that I am, slowly but surely, catching up with my Google Reader (yay: The Collective is back in my Google Reader!), but it's taking me a while. If you have clicked through a new comment of mine on an older post of yours, welcome! Sorry to be so late to the party! I'm getting there.
I managed to catch, in these 33 days, at least one sinus infection (either inadequately quashed the first time and capable of rebounding, or a party-bug who invited a friend over; impossible to tell) and a case of thrush that made me want to rip my tongue out and use sandpaper on it. Thankfully, the thrush has cleared up, and the infection(s) are on their way out as well. (She says, trying not to jinx herself this time.)
So I'm going to talk a little bit about a couple of things now, and I'm going to warn you that the very first thing I'm going to talk about is exceedingly gross. As in "Are you really about to tell the internet that...?" level gross. But here is where I talk about things that I can't discuss in real life/make my family understand, and so, you lovelies have a bit of forewarning that you might want to skip item #1.
Item #1: Every week since my surgery (and twice the first week immediately following the surgery), I have had to go to the ENT surgeon for a check in. During these check ins, he pokes at my face a little bit, looks up my nose, down my throat and in my ears - in short, all the things you expect the ENT to do. And then things take a dramatic turn for the worse, and I break out in the kind of flop sweat usually only experienced when the dentist turns around with that huge needle in his hand. Luckily, the ENT does not start poking me with needles, but, rather unluckily, he instead decides that now is the time to insert things up my nose.
UP my NOSE, people. My very tender, and much abused nose. First, he sprays a little numbing stuff, which is about as useful as tap water would be, and then he uses a long thin strip of cotton ball, doused in decongestants, and his looooooong metal pliers, and he stuffs the cotton ball up my nostrils. He leaves it there for a minute and disappears behind me, while the medicinal tasting decongestant drips out of my nose and down the back of my throat.
The first time this happened, I was a little bit shocked: I assumed that when he said he was going to use a decongestant, that he meant a nasal spray. And that was going to be bad enough, because my nose was already swollen and sore, and now he was going to spray stuff up there? Bah. So I was sitting there all shocked and drippy, waiting for him to take this gross stuff out of my nose when, all of the sudden, there's an unexpected noise behind me. A mechanical noise, a little hum that is entirely out of place. And then things go way downhill, way too fast.
Because the mechanical humming noise is coming from some sort of vacuum, not unlike an elongated, metal version of the doohickey that the dentist uses to suck spit out of your mouth during a cleaning, and the ENT is telling me that this damn thing is going up my nose to "clean out what's left."
Are you freaking kidding me??? This was not mentioned during the numerous pre-op discussions we had about surgery and aftercare; This was not mentioned in my aftercare instructions; This was not mentioned anytime during the previous 15 minutes I've been sitting here talking to you: NOW you are telling me, as you approach me with that goddamn thing, that you're going to suck stuff out of my sinuses? I am so not on board with this.
But, what choice did I have, really, since this is part of the after care - I'm going to go through all the pain of the surgery, and then have it be a waste because I didn't do the necessary follow up? I don't think so. How bad can it be, really?
Oh, it can be really, really bad. *I should put a disclaimer here that this was my experience, and the whole sucking out of sinuses might not be a big deal for other people: I can't really say. Except for another guy who was having the same surgery/procedure done on my first post-op visit who yelled really loudly from inside the room while I was waiting for my appointment, so he obviously didn't enjoy it either (if only I had known why he was yelling before I went in...). I can only say, that for me? It was a gigantic deal. Not just because I was already in a lot of pain, although I was, but because, to me, it feels like drowning.
The sensation of not being able to breathe through your noise is bad enough, but you add in the forced pressure of that little vacuum, and the fact that you can feel it not just in your sinuses and nose, but in the back of your throat? And it adds up to a completely overwhelming and painful experience. I cried, the first time, and (Mum told me later) was also, from the waiting room, quite audible in my distress. I cried the second and third times too, and I'm not even the tiniest bit embarrassed by that fact. (It was a little bit less traumatic the last two times, thankfully.)
It hurt, and I am already hurting enough.
But it was the panic that it caused me that was most distressing... the doctor actually told me to "breathe through your mouth" (as if I had any other options) "or you're going to have a panic attack". That is because you are cutting off my air supply, and my body, for some reason thinks this is a bad idea. He also appeared shocked that I would find this so upsetting, only adding to my impression of him as completely out of touch with reality ("7-10 days and you'll be good as new!"; "No patient has ever had a sinus infection so soon, post-op: are you sure that's what it is?"; "You should chew more gum to help stretch those muscles, did I forget to tell you that?").
The only good news is that I now don't have to go back for another month, baring additional issues, and that time, he may not even have to use the vacuum. Fingers crossed! End of totally disgusting and barbaric Item #1.
Item #2 - I have missed out on a lot of things in the course of the 33 days: a cousin's wedding (which apparently included much celebrating), my birthday, a college reunion I wasn't going to go to anyways (but I would've liked to make the my-girls dinner pre-party), Lil Girl's end of school celebration, No Longer Youngest Nephew's school report (which I have never been invited to before :( ), and more than a bit of family drama that I'm still trying to catch up with. Everybody in my family had issues during this period, and I feel like I am a page or two behind on the stories, which is a feeling I truly hate. I also feel like this lag in my understanding of things has caused new drama, which I have to figure out how to fix, but can't till my brain is back at full power, which sucks. This is one of the things I tried to factor into my decision to have the surgery - knowing I would be so far behind/out of the loop, and trying to make it be ok, but I absolutely hate not being there for people when they need me (and we can talk about why I don't expect people to show up for me when I need them some other time, thank you very much). It has been hard, playing catch up, apologizing for the gaps and lapses, the gaffs and digs I've delivered unknowingly. Or trying to, at least.
But at the same time, I'm trying to be realistic about this - I had the right to do something that, hopefully, is going to lead to a real improvement in my health. It wasn't selfish to do this, even if I don't get the outcome I wanted. Or, if it is selfish, only in a good way. This is one of the things I have decided to work on, about myself - that I don't cut myself enough slack about important things. Yes, it is vital to be someone that my family and friends can depend on, and it stinks when my health issues get in the way of that. But that doesn't mean it's not something that people should try to understand, and that doesn't mean it's something I should feel badly for (at least, not excessively so). So, I'm working on that. It is much harder done than said.
Item #3 I would just like to state, for the record, that I am through thinking about my weight. Because I ate nothing but soup broth and mashed potatoes, slush, bananas, and jello for, let's say 27 days, discounting the first two days (when I could only eat slush), and the last four (when I've been expanding into other, actually needs to be chewed types of food). And I think I gained weight, to be honest with you. So if I can't lose weight on three weeks of vegetarian, non-chewable mush, then I'm just not going to lose weight. So I better figure out how to like the size I am right now.
I think that's about it for now, before this post turns into a novel. I'll be back pretty soon (certainly more frequently now), and we'll talk about something completely different, won't that be nice? Please also know that I am, slowly but surely, catching up with my Google Reader (yay: The Collective is back in my Google Reader!), but it's taking me a while. If you have clicked through a new comment of mine on an older post of yours, welcome! Sorry to be so late to the party! I'm getting there.
Thursday, June 17, 2010
Well, so far,
this operation has not been as big a success in the whole "preventing multiple infections" genre as I might have hoped. I'm on my way back from my second infection since the surgeries, all though I will say that (so far, knock wood, cross fingers) the duration of this infection is hopefully of an atypically (for me) short duration. That is the hope anyways.
I've been pissed off because I told Lil Girl's parents to keep her at home last week when she was sick (which I hate to do) and I specifically did not go to my cousin's wedding this weekend because I was trying to take the safe road and keep myself away from germs and rest up and recover. And then, by Monday morning, I was sick as a dog. Again. So it really didn't matter that I didn't do the things I wanted to do; I got sick anyways. Realistically, I know that there wasn't a connection, but still: pissed.
I am recovering, though: my voice was coming back before I coughed it away this week, and my face wasn't as painful as it had been (before it took on it's new infection throbbing). One strangely unanticipated side effect from my septum repair is this odd tingling in my front teeth/roof of my mouth. The doc says this is because the nerve that runs there begins at the base of my nose, and I say it would've been nice if he had mentioned that before the surgery, but since it's supposed to go away, I'll just keep spraying Chloraseptic on it and drooling like I just got "woot canal".
I can't really judge how healed I might be, what with the new issues, but I'm working through a course of antibiotics (and got back from yet another horrid visit with the surgeon), so hopefully, by this time next week I'll be doing better and will be able to say "I'm healing" without all the caveats. Thanks for your support, in the meantime.
I do have a lot of things I want to do this summer, so keep fingers crossed that this is the END of summer infections for me.
I've been pissed off because I told Lil Girl's parents to keep her at home last week when she was sick (which I hate to do) and I specifically did not go to my cousin's wedding this weekend because I was trying to take the safe road and keep myself away from germs and rest up and recover. And then, by Monday morning, I was sick as a dog. Again. So it really didn't matter that I didn't do the things I wanted to do; I got sick anyways. Realistically, I know that there wasn't a connection, but still: pissed.
I am recovering, though: my voice was coming back before I coughed it away this week, and my face wasn't as painful as it had been (before it took on it's new infection throbbing). One strangely unanticipated side effect from my septum repair is this odd tingling in my front teeth/roof of my mouth. The doc says this is because the nerve that runs there begins at the base of my nose, and I say it would've been nice if he had mentioned that before the surgery, but since it's supposed to go away, I'll just keep spraying Chloraseptic on it and drooling like I just got "woot canal".
I can't really judge how healed I might be, what with the new issues, but I'm working through a course of antibiotics (and got back from yet another horrid visit with the surgeon), so hopefully, by this time next week I'll be doing better and will be able to say "I'm healing" without all the caveats. Thanks for your support, in the meantime.
I do have a lot of things I want to do this summer, so keep fingers crossed that this is the END of summer infections for me.
Monday, June 07, 2010
Took me a while
but I'm finally posting to let you all know that the surgery went well, and I am recuperating. It is a process, which I hate (I'm much more in the mood for a recovery of the 'flip a switch' variety), but since I'm finally seeing/feeling signs of progress, I suppose it'll do.
I will say that it was a much more painful prospect than I had prepared myself for, the probable cause of which includes me getting an infection, and thrush, and being hideously nauseous to the point of dry heaves, and not realizing that this was not just a normal post-op situation, and trying to 'push through' it like a big dope. But, now it is starting to get better, and today I ate noodles (my first meal other than mashed potatoes, slush, jello or soup broth), so I know it must be improving.
The pain meds are killer, in that I find myself constantly loopy: Today is my first day back on the computer, and I have spent an hour and a half writing the three paragraphs you see here in the hopes that they will be logical and legible. I do not like this sort of high life, and am trying to cut back on the pain meds as much as possible, so that I can function.
Worst of all, probably, is the fatigue. This is not unexpected either, since the CFIDS makes exhaustion my constant companion, but I always forget how much energy recovering from illness/stress/operations takes, and then am shocked when I can barely life my head from the pillow sometimes. We had two weeks without Lil Girl, and I think my incapacity has shocked her too, now, which I hate. I don't like for people to see how weak I can get, and for her to see it (because I see that it worries her) makes me want to cry.
Or punch things. If I had any energy to punch things, but I can't cry because Did you know? That crying? After sinus surgery? Will HURT??? Well it will: Trust me.
So there's the update: Am doing better. Would not make this decision again if I had it to do over (but should probably reserve judgement until I see if it actually helps things). Need a large, large nap. And less woogy drugs. Miss you all, and will try to check in again really soon.
Love, NTE
I will say that it was a much more painful prospect than I had prepared myself for, the probable cause of which includes me getting an infection, and thrush, and being hideously nauseous to the point of dry heaves, and not realizing that this was not just a normal post-op situation, and trying to 'push through' it like a big dope. But, now it is starting to get better, and today I ate noodles (my first meal other than mashed potatoes, slush, jello or soup broth), so I know it must be improving.
The pain meds are killer, in that I find myself constantly loopy: Today is my first day back on the computer, and I have spent an hour and a half writing the three paragraphs you see here in the hopes that they will be logical and legible. I do not like this sort of high life, and am trying to cut back on the pain meds as much as possible, so that I can function.
Worst of all, probably, is the fatigue. This is not unexpected either, since the CFIDS makes exhaustion my constant companion, but I always forget how much energy recovering from illness/stress/operations takes, and then am shocked when I can barely life my head from the pillow sometimes. We had two weeks without Lil Girl, and I think my incapacity has shocked her too, now, which I hate. I don't like for people to see how weak I can get, and for her to see it (because I see that it worries her) makes me want to cry.
Or punch things. If I had any energy to punch things, but I can't cry because Did you know? That crying? After sinus surgery? Will HURT??? Well it will: Trust me.
So there's the update: Am doing better. Would not make this decision again if I had it to do over (but should probably reserve judgement until I see if it actually helps things). Need a large, large nap. And less woogy drugs. Miss you all, and will try to check in again really soon.
Love, NTE
Wednesday, May 19, 2010
Reasons to cancel the surgery
(via my screwed up, please let me cancel the surgery! brain)
- Because the Lost series finale is on Sunday, and it is like a total pop culture moment (that I will be totally out of it for). Also, it will make me cry, and my face will probably hurt too much for crying.
- Because 6:30 is just too damn early in the morning.
- Because I have been availing myself of Dr. Google, and neither of us are pleased with what we see there.
- Because my throat isn't even hurting right now, and that is ridiculously rare! (Also: Do not currently have sinus infection! This is beyond rare... and should be appreciated.)
- Because how the hell am I going to take my regular meds? (Note to self: call tomorrow and see if there is liquid Lyrica.)
- Because... I don't wanna do it?
No: The surgery is set (fingers crossed, and barring any news from the pre-op people who still haven't called me), for 7:30 on Friday morning. I'm the first one in, which means I should also be the first one out. Which is good, because waiting is not my strong suit. All those people who comment on my 'patience' have never had to sit in a hospital waiting room with me while my mind buzzes ahead at 732 miles an hour. (Actually, some of them have, but usually I am good at hiding the buzz from people who aren't really paying attention.)
Of course, I am now coming up with a zillion different reasons why I should not let them cut open my nose or tear out the little bumps in the back of my throat, but I realize those are just my little anxieties popping up, and I try to pop them right back down. It's like one of those Whack-a-mole games: Up - Bam! - back down. Back UP - Bam! - back Down. I just have to keep bopping them on the head long enough to get to the hospital on Friday morning, at which point Mum will make me do it whether I want to or not, because she had to leave the house at 5:45 in the fricking morning.
Although I realize that it's not - in all likelihood - a life altering procedure, I'm pretty nervous about the whole thing (in case my endless blathering on about it here hasn't made that pretty obvious), but only because ... well, if you've been reading any of the blathering over the last 4-5 years, then you know why. Because medical science and NTE's body are not friends. Because whatever reaction you say it is impossible to have, then that is the reaction I will have. Because I'm in a place right now that isn't horrid and unlivable, and I am loathe to poke the bear and wind up there. Because if I wasn't nervous, at this point in my life, with this body and all of my experiences, then I would have to be pretty ignorant.
I know there are lots of people - somewhere in the midst of all those Temporarily Able Bodied people we people with disabilities talk about - that there are people who actually get up in the morning and never give a second thought to whether or not their body will respond in the way it ought. Who never have to second (third, fourth, fifth) guess a doctor's recommendation, or worry that things might not work out for them. I don't remember it, exactly: That ignorant feeling of being in control of my own body and what it was capable of, but I know that I am not one of those people anymore.
Back when I was dancing, there came a point, in the year or two right before I got sick, where I was constantly twisting my ankles. I must have sprained the right one 4 times in the course of a year and a half. And I mean seriously sprained - and even a slight fracture once. But I was 13, 14, 15, and it meant nothing - a week, two weeks, and I would be back dancing again, good as new. It honestly didn't occur to me that there could be any other outcome.
I was more fearless then: If I sprained something now, I would probably never attempt that activity again... I avoid things that cause even the most minor of injuries, go out of my way to avoid even the tiniest bit of extra pain.
Because here's the thing: Being in pain changes who you are. It changes how you see the world, how you fit into the world, how you interact with the world. Everything is a risk now. Opening my eyes, rolling over, tying my shoe. It's all a big deal, it's all a potential threat. And that's a horrible way to live, so I suppress it as much as I can. I don't overthink the little things (at least I try not to). I try to offset the extra neck tension I'll get from sitting at the table for dinner with a little extra ice pack time, or pencil in a hot shower because I decided to sit on the floor with little girl today.
You figure most things out, because you have to live.
But asking for extra pain? Going into something that is going to hurt, no matter what - even knowing that it's probably essential in the long run, well that's just incredibly risky to me. Because I can't assume that it's going to be fine, and I can't pretend that the extra pain - and oh, boy, does everybody agree that there's going to be extra pain - isn't almost a dealbreaker for me. And I shouldn't have to pretend, but in real life, I do.
The number of people - related to me, who have been witness to my illness from the beginning people - who have played oppression Olympics with me ("It's not as if it's a tumor their taking out/you're having chemo/you're losing something important" or have asked me what the "big deal is - you'll get to have tons of ice cream"? Is frustratingly high.
"But what are your other choices?" they ask. "You're going to keep getting sick right? So just let them do the little snip here, little poke there --- maybe get your tummy tucked or your boobs shrunk a little while you're under, ha ha --- and then it'll be fine" they say. (And no: I'm not talking about you, who was actually thinking about how combining surgeries would be helpful re: not having to do anesthesia twice. I'm talking about the more thoughtless among us).
Right, because A) This is totally a joke to me. and B)You're not the one who has to live in my body, in my level of pain, now or then. So you can't really tell me whether or not it's a big deal. You just have to take my word for it - this is a big deal. I know it's not cancer or whatever the hell you think would be a big enough reason for me to worry, but I'm still worried.
Let me just say this again: Even if everything goes absolutely 100% as it should, by the book, perfect: This is still going to be a big deal for me.
Because all of those little sad faces that they give you in the ER so you can point out your pain? None of them is going to cover me anymore. Because I am already at the saddest face, I am already as high as the numbers will go, and now I'm volunteering for more: That is a hell of a big deal.
And I realize, as I am trying to find a conclusion to this very wandering post, that nobody who needs to read it will read it, because they don't know it's here. (Thank god!) But that maybe just writing it was the point, because all of the sudden I don't feel so ridiculous about being completely stressed out about this - It is a Big Deal for me, and it's something that I don't have to apologize for being a bit anxious about. So if I want to brainstorm reasons to back out of it, knowing that I won't actually back out of it, so be it.
Now, somebody give me a really good one, because "getting all the ice cream I want" is no longer on the pro side of the list: I'm an adult, and if I want ice cream, I will damn well eat it, surgery or no surgery.
Maybe I'll just add "because I'd rather go to Dairy Queen" to the list...
- Because the Lost series finale is on Sunday, and it is like a total pop culture moment (that I will be totally out of it for). Also, it will make me cry, and my face will probably hurt too much for crying.
- Because 6:30 is just too damn early in the morning.
- Because I have been availing myself of Dr. Google, and neither of us are pleased with what we see there.
- Because my throat isn't even hurting right now, and that is ridiculously rare! (Also: Do not currently have sinus infection! This is beyond rare... and should be appreciated.)
- Because how the hell am I going to take my regular meds? (Note to self: call tomorrow and see if there is liquid Lyrica.)
- Because... I don't wanna do it?
No: The surgery is set (fingers crossed, and barring any news from the pre-op people who still haven't called me), for 7:30 on Friday morning. I'm the first one in, which means I should also be the first one out. Which is good, because waiting is not my strong suit. All those people who comment on my 'patience' have never had to sit in a hospital waiting room with me while my mind buzzes ahead at 732 miles an hour. (Actually, some of them have, but usually I am good at hiding the buzz from people who aren't really paying attention.)
Of course, I am now coming up with a zillion different reasons why I should not let them cut open my nose or tear out the little bumps in the back of my throat, but I realize those are just my little anxieties popping up, and I try to pop them right back down. It's like one of those Whack-a-mole games: Up - Bam! - back down. Back UP - Bam! - back Down. I just have to keep bopping them on the head long enough to get to the hospital on Friday morning, at which point Mum will make me do it whether I want to or not, because she had to leave the house at 5:45 in the fricking morning.
Although I realize that it's not - in all likelihood - a life altering procedure, I'm pretty nervous about the whole thing (in case my endless blathering on about it here hasn't made that pretty obvious), but only because ... well, if you've been reading any of the blathering over the last 4-5 years, then you know why. Because medical science and NTE's body are not friends. Because whatever reaction you say it is impossible to have, then that is the reaction I will have. Because I'm in a place right now that isn't horrid and unlivable, and I am loathe to poke the bear and wind up there. Because if I wasn't nervous, at this point in my life, with this body and all of my experiences, then I would have to be pretty ignorant.
I know there are lots of people - somewhere in the midst of all those Temporarily Able Bodied people we people with disabilities talk about - that there are people who actually get up in the morning and never give a second thought to whether or not their body will respond in the way it ought. Who never have to second (third, fourth, fifth) guess a doctor's recommendation, or worry that things might not work out for them. I don't remember it, exactly: That ignorant feeling of being in control of my own body and what it was capable of, but I know that I am not one of those people anymore.
Back when I was dancing, there came a point, in the year or two right before I got sick, where I was constantly twisting my ankles. I must have sprained the right one 4 times in the course of a year and a half. And I mean seriously sprained - and even a slight fracture once. But I was 13, 14, 15, and it meant nothing - a week, two weeks, and I would be back dancing again, good as new. It honestly didn't occur to me that there could be any other outcome.
I was more fearless then: If I sprained something now, I would probably never attempt that activity again... I avoid things that cause even the most minor of injuries, go out of my way to avoid even the tiniest bit of extra pain.
Because here's the thing: Being in pain changes who you are. It changes how you see the world, how you fit into the world, how you interact with the world. Everything is a risk now. Opening my eyes, rolling over, tying my shoe. It's all a big deal, it's all a potential threat. And that's a horrible way to live, so I suppress it as much as I can. I don't overthink the little things (at least I try not to). I try to offset the extra neck tension I'll get from sitting at the table for dinner with a little extra ice pack time, or pencil in a hot shower because I decided to sit on the floor with little girl today.
You figure most things out, because you have to live.
But asking for extra pain? Going into something that is going to hurt, no matter what - even knowing that it's probably essential in the long run, well that's just incredibly risky to me. Because I can't assume that it's going to be fine, and I can't pretend that the extra pain - and oh, boy, does everybody agree that there's going to be extra pain - isn't almost a dealbreaker for me. And I shouldn't have to pretend, but in real life, I do.
The number of people - related to me, who have been witness to my illness from the beginning people - who have played oppression Olympics with me ("It's not as if it's a tumor their taking out/you're having chemo/you're losing something important" or have asked me what the "big deal is - you'll get to have tons of ice cream"? Is frustratingly high.
"But what are your other choices?" they ask. "You're going to keep getting sick right? So just let them do the little snip here, little poke there --- maybe get your tummy tucked or your boobs shrunk a little while you're under, ha ha --- and then it'll be fine" they say. (And no: I'm not talking about you, who was actually thinking about how combining surgeries would be helpful re: not having to do anesthesia twice. I'm talking about the more thoughtless among us).
Right, because A) This is totally a joke to me. and B)You're not the one who has to live in my body, in my level of pain, now or then. So you can't really tell me whether or not it's a big deal. You just have to take my word for it - this is a big deal. I know it's not cancer or whatever the hell you think would be a big enough reason for me to worry, but I'm still worried.
Let me just say this again: Even if everything goes absolutely 100% as it should, by the book, perfect: This is still going to be a big deal for me.
Because all of those little sad faces that they give you in the ER so you can point out your pain? None of them is going to cover me anymore. Because I am already at the saddest face, I am already as high as the numbers will go, and now I'm volunteering for more: That is a hell of a big deal.
And I realize, as I am trying to find a conclusion to this very wandering post, that nobody who needs to read it will read it, because they don't know it's here. (Thank god!) But that maybe just writing it was the point, because all of the sudden I don't feel so ridiculous about being completely stressed out about this - It is a Big Deal for me, and it's something that I don't have to apologize for being a bit anxious about. So if I want to brainstorm reasons to back out of it, knowing that I won't actually back out of it, so be it.
Now, somebody give me a really good one, because "getting all the ice cream I want" is no longer on the pro side of the list: I'm an adult, and if I want ice cream, I will damn well eat it, surgery or no surgery.
Maybe I'll just add "because I'd rather go to Dairy Queen" to the list...
Friday, May 14, 2010
So I'm sitting here
at quarter to three in the morning, after playing Family Feud on Facebook, and browsing on Etsy long enough to add a whole new page of favorite things, and typing up two long overdue, rambly and probably non-sensical e-mails, wondering what the hell I am going to do.
This surgery is on Friday, and - as of today - that is still a go. The liver issues seem to be under control (2nd set of liver tests = no problem, just like I suspected they would be), but I've got another round to go before I get the all-clear.
I do not like to be in limbo, and yet I seem to be spending an awful lot of time there.
So I am assuming that I am having the surgery on Friday, as in a week from today, and holy crap that is soon... which means I now have to figure out all of the things I need to do before Friday, in order to not have to worry about them after the surgery.
I've been stockpiling books (which I do anyways), and magazines that take little thought or effort. I've got a week or two worth of funny shows on my DVR that I specifically didn't watch, and a Netflix queue (instant and through mail) as long as my to-do list. I'm going to fill out all the paperwork for anything that might be due in week or two following the surgery - bills to be paid, mail to send, etc - today, and I'm saving the major clean up for Thursday, because I know I'll just mess everything up again anyways if I do it now.
I wanted to have a sleepover this weekend with No Longer Youngest Nephew, partly because I don't know when I'll be up to it again, and partly because I knew he'd be a great distraction, but it turns out he's got a Sunday baseball game, so (since I don't drive), that fell through. I've also invited College Roommate/Best Friend to come and visit, but she's usually weekend booked all the way through the end of the school year, so I'm not holding out much hope there either.
But I think if it's just me sitting here, things could get pretty dicey pretty quickly, so I'm just going to think of LOTS of things that need to be done between now and then, so I don't have time to obsess. Because obsessing is something I can be very good at, and it could lead to chickening out, which I am determined not to do, so, therefore (and, Off Topic: I really think the keyboard ought to have a Therefore symbol - maybe instead of the #... those three little circles in the shape of a triangle that came in so handy in freakin geometry, I could use those on my keyboard, just saying): Keeping Busy.
On the one hand, this is relatively minor surgery.
On the other hand, this is my body, which never reacts as the doctors say it 'should', and my face, which is already in enough pain, and myself, which also has enough pain and exhaustion to deal with, thank you very much... so this is the hand that will lead to the obsessing.
I'm trying to focus on that first hand instead. And this magical third hand that appeared out of nowhere to remind me that I will be under anesthesia, which means I will get some SLEEP. Real, actual, knock-me-out for a few hours sleep. The kind that my body has completely forgotten how to manufacture, and I will take whatever I can get. Artificially induced or not, I'm going to focus on the fact that a week from today, I will be taking a NAP. I know I cannot articulate exactly how awesome that will be, but let's just say that it almost makes me forget that they're going to be cutting out pieces of my body and sticking metal hooks up my nose. Almost.
In the meantime, I've got the itchy scratchies, but no actual energy to work them off, so I hope you'll excuse a few rambling blog posts, particularly if they're just serving as poor reminders to myself that this is not something to get all wimpy about.
Or about how I played Ms Pacman for the better part of two hours yesterday, and had over a million points because this was an online fake version of the game and when you ate the little 'turn the ghosts blue' pellets, the ghosts never changed back to their original colors unless you ate them, thus giving you the run of the board for ridiculously long periods of time. Ms. Pacman Champion, right here.
This surgery is on Friday, and - as of today - that is still a go. The liver issues seem to be under control (2nd set of liver tests = no problem, just like I suspected they would be), but I've got another round to go before I get the all-clear.
I do not like to be in limbo, and yet I seem to be spending an awful lot of time there.
So I am assuming that I am having the surgery on Friday, as in a week from today, and holy crap that is soon... which means I now have to figure out all of the things I need to do before Friday, in order to not have to worry about them after the surgery.
I've been stockpiling books (which I do anyways), and magazines that take little thought or effort. I've got a week or two worth of funny shows on my DVR that I specifically didn't watch, and a Netflix queue (instant and through mail) as long as my to-do list. I'm going to fill out all the paperwork for anything that might be due in week or two following the surgery - bills to be paid, mail to send, etc - today, and I'm saving the major clean up for Thursday, because I know I'll just mess everything up again anyways if I do it now.
I wanted to have a sleepover this weekend with No Longer Youngest Nephew, partly because I don't know when I'll be up to it again, and partly because I knew he'd be a great distraction, but it turns out he's got a Sunday baseball game, so (since I don't drive), that fell through. I've also invited College Roommate/Best Friend to come and visit, but she's usually weekend booked all the way through the end of the school year, so I'm not holding out much hope there either.
But I think if it's just me sitting here, things could get pretty dicey pretty quickly, so I'm just going to think of LOTS of things that need to be done between now and then, so I don't have time to obsess. Because obsessing is something I can be very good at, and it could lead to chickening out, which I am determined not to do, so, therefore (and, Off Topic: I really think the keyboard ought to have a Therefore symbol - maybe instead of the #... those three little circles in the shape of a triangle that came in so handy in freakin geometry, I could use those on my keyboard, just saying): Keeping Busy.
On the one hand, this is relatively minor surgery.
On the other hand, this is my body, which never reacts as the doctors say it 'should', and my face, which is already in enough pain, and myself, which also has enough pain and exhaustion to deal with, thank you very much... so this is the hand that will lead to the obsessing.
I'm trying to focus on that first hand instead. And this magical third hand that appeared out of nowhere to remind me that I will be under anesthesia, which means I will get some SLEEP. Real, actual, knock-me-out for a few hours sleep. The kind that my body has completely forgotten how to manufacture, and I will take whatever I can get. Artificially induced or not, I'm going to focus on the fact that a week from today, I will be taking a NAP. I know I cannot articulate exactly how awesome that will be, but let's just say that it almost makes me forget that they're going to be cutting out pieces of my body and sticking metal hooks up my nose. Almost.
In the meantime, I've got the itchy scratchies, but no actual energy to work them off, so I hope you'll excuse a few rambling blog posts, particularly if they're just serving as poor reminders to myself that this is not something to get all wimpy about.
Or about how I played Ms Pacman for the better part of two hours yesterday, and had over a million points because this was an online fake version of the game and when you ate the little 'turn the ghosts blue' pellets, the ghosts never changed back to their original colors unless you ate them, thus giving you the run of the board for ridiculously long periods of time. Ms. Pacman Champion, right here.
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