What did I say I was going to talk about tonight?
How about strep throat? Was that it? No: I didn't think so, and yet, there it is.
I spent the whole week hoping that my throat was just raw because the music was So. Loud. at the wedding on Sunday (I am the old person you all hate - Why does the music have to be that LOUD???) so to talk to anybody, you were basically yelling. All night long. I just figured I'd strained my voice a little.
And that probably was some of it, but then when I went in for my shots on Wednesday and some man in the doctor's office coughed directly on me. Like, right on my face. And didn't even give me the courtesy of an "oops," let alone an "I'm sorry, I just gave you the plague, would you like a Kleenex?"
So when my throat was about a million times worse this morning, I gave in and called my primary care, who was, you guessed it! Out of the office for the day, but her on-call covering doc could see me at three, would that be okay? Sure. Whatever. Fine.
They called three times between 10:00 this morning and noon to rearrange the appointment times, and I was ready to be like "Never mind: miraculously healed! Just stop calling and making me TALK - did I mention my throat hurts?!", but then they did stop calling, so I decided to suck it up and go.
Now, the only new symptom has been my throat - nothing else, no coughing or wheezing or sneezing or anything, so I just assumed the covering doc would look at the red rawness, stick one of those sticks down my throat, and write me a prescription for the strep throat antibiotic I obviously need.
Isn't it hilarious how I'm still optimistic (and stupid) after all these years of dealing with doctors?
No it was: Let's talk about why you're in the wheelchair (because it might somehow be relevant?), and What do you mean it hurts when I press on your neck and lymph nodes (they hurt all by themselves, lady: don't touch!) and Are you sure you had bronchitis a few weeks ago? (Well, maybe I had a brontosaurus a few weeks ago, but I'm pretty sure it was bronchitis.) Literally, let's just retake your whole history, for a strep test. And then? Still not give you any antibiotics.
No, after hearing that I'd had bronchitis a couple of weeks ago, and three or four sinus infections this year, the on-call doc decided that I might just have another sinus infection, and gave me Flonase. Which... doesn't treat sinus infections. (Or, at the very least, doesn't treat MY sinus infections.) Told me to gargle with salt water (which I've been doing, and I hate, and blech). Or it could be allergies, although allergy season is mostly over....and I'm on no less than three allergy meds. Whatever. Definitely helpful, thanks!
And then she preceded to talk for fifteen minutes about how interesting POTS is and how she's never seen anybody with that, and isn't it amazing how many ways the body has to adapt to things?
Um... no?
My body is MALadaptive, lady. It is adapting poorly, not "amazingly." And I don't care if you see patients like me every single day, or once every 3000 years, could you just stop chattering on and on and actually treat what I'm here for, so I can go home and be sick in my own damn bed?
It was frustrating, to say the least, and the thing that makes it worse is that if I had called yesterday, instead of waiting to see if it'd go away (like a dope), I could've called Zack's office, and the nurse there would've just sent my antibiotic rx right through... I kind of having a standing order. But they're out of the office today, so I figured the primary care was my next best shot.
Turns out my next best shot would've been attending medical school myself, so I could write out the damn prescription and stick my own little swab down my throat. Next time.
Showing posts with label Whining. Show all posts
Showing posts with label Whining. Show all posts
Friday, November 16, 2012
Thursday, January 05, 2012
In which I morph from Grumpy to Weepy, all in four short paragraphs!
For a large portion of the day, I felt so grumpy that I didn't think I should be allowed around other humans. I almost typed "grumpy for no good reason", but then I thought about it, and it was more like "grumpy for a thousand good reasons, but none that I can do anything about right this second", which basically amounts to the exact same thing. I came here, all prepared to write (yet another) endless rant about lord only knows what, but sometime in the last half hour, while sitting at the table with my family eating a very late dinner, the majority of those bad feelings shrunk down to manageable, and I think I'll save the rant for another day. For tonight, I think I'll tell you how glad I am that I'm just sitting here, wandering around through the internet, while most of the people I love are accounted for.
It seems, at least to me, that my life - and the lives of the people I am closest to - has become a series of blundering our way through one emergency to another, from one crisis to the next, ricocheting from one hectic gathering to the last, often leaving very little time for essentials of life, such as breathing or eating. Every day has taken on an urgency that didn't used to be there, and at the same time, leaves me with such a useless, futile feeling: It's as if I'm running as hard as I can, and getting nowhere, not understanding that there's a treadmill beneath my feet as opposed to a street.
Moving all the time - at least mentally - and making no progress. Even the areas where I can see progress being made, it feels like so little, too little to ultimately matter. I am that prototypical lone sailor, trying to bail out my boat with a teaspoon, only some days, it seems more like a thimble. So it's a rare treat when I can stop running for a little while, put down the teaspoon/thimble, and just be.
And even a half hour of just being. Of just letting a good book take me far away, or sitting with my family at dinner listening to them bitch, or here, in the dark talking to you fine people, is invaluable. (Literally had to just google invaluable to make sure it meant what I wanted it to mean. It does: you guys are priceless, google says I say so.) Back to the bailing, would appreciate larger spoons.
It seems, at least to me, that my life - and the lives of the people I am closest to - has become a series of blundering our way through one emergency to another, from one crisis to the next, ricocheting from one hectic gathering to the last, often leaving very little time for essentials of life, such as breathing or eating. Every day has taken on an urgency that didn't used to be there, and at the same time, leaves me with such a useless, futile feeling: It's as if I'm running as hard as I can, and getting nowhere, not understanding that there's a treadmill beneath my feet as opposed to a street.
Moving all the time - at least mentally - and making no progress. Even the areas where I can see progress being made, it feels like so little, too little to ultimately matter. I am that prototypical lone sailor, trying to bail out my boat with a teaspoon, only some days, it seems more like a thimble. So it's a rare treat when I can stop running for a little while, put down the teaspoon/thimble, and just be.
And even a half hour of just being. Of just letting a good book take me far away, or sitting with my family at dinner listening to them bitch, or here, in the dark talking to you fine people, is invaluable. (Literally had to just google invaluable to make sure it meant what I wanted it to mean. It does: you guys are priceless, google says I say so.) Back to the bailing, would appreciate larger spoons.
Tuesday, November 01, 2011
Game On.
Here it is November First, all over again. And for the first time in five years, I have given very little thought to participating in NaBloPoMo, where you agree to post at least one blog entry for every day of the month. I am seriously doubting my ability to complete the entire challenge, not because of something big and world changing, but because of a million different little things. I talked about it some in this post, already, but I'm still finding it difficult to put words to paper (or, more likely, computer screen) in a way that seems legible and laudable. I mean, I can just say random things for thirty days in a row, I'm sure, but I don't particularly want to do that: I think this blog and I are past the point of just posting to have a post up. (At least, I hope we are.)
No, I want what I say here to matter, and that's half the problem right there - it matters so much that it grows and grows in my mind until I can't write anything, because what can I say that's going to be new or different or interesting or worthwhile? And while I have tons of things I think it'd be great to write about, more often then not, they get all stopped up in my head together, and I spend an entire hour trying to untie them enough to type them out, only to wind up with a mess of nonsense that's definitely not publishable.
So I'm not making any promises on my ability to complete the month, but I am going to commit to sitting my butt down and trying to get the words to come out in a way that makes sense, for three reasons. First, I need to follow through with something - I feel like I'm letting too many bits and pieces of who I am slip through my fingers. Second, we all know that having all of this stuff log-jammed up in my brain is not doing me any good, and it'd be great to get some new perspectives on some of this stuff. And lastly, I always feel such a sense of pride and accomplishment when I complete NaBloPoMo, and I'd hate to either lose that feeling or break my streak.
I could use all the good feelings I can get, at this point. So I'm here to kick of November on the right foot, and cross my fingers that it goes as well as it can. Tomorrow we can talk about all the ways it is sucking so far, but for today, November: let's do this!
No, I want what I say here to matter, and that's half the problem right there - it matters so much that it grows and grows in my mind until I can't write anything, because what can I say that's going to be new or different or interesting or worthwhile? And while I have tons of things I think it'd be great to write about, more often then not, they get all stopped up in my head together, and I spend an entire hour trying to untie them enough to type them out, only to wind up with a mess of nonsense that's definitely not publishable.
So I'm not making any promises on my ability to complete the month, but I am going to commit to sitting my butt down and trying to get the words to come out in a way that makes sense, for three reasons. First, I need to follow through with something - I feel like I'm letting too many bits and pieces of who I am slip through my fingers. Second, we all know that having all of this stuff log-jammed up in my brain is not doing me any good, and it'd be great to get some new perspectives on some of this stuff. And lastly, I always feel such a sense of pride and accomplishment when I complete NaBloPoMo, and I'd hate to either lose that feeling or break my streak.
I could use all the good feelings I can get, at this point. So I'm here to kick of November on the right foot, and cross my fingers that it goes as well as it can. Tomorrow we can talk about all the ways it is sucking so far, but for today, November: let's do this!
Wednesday, August 17, 2011
Where have I been?
I see that it's been nearly a month between postings, and I didn't want you to think I'd forgotten you... nearly everyday I have a "You should say something to the nice blog people" moment, but it isn't accompanied by the energy and effort that's been required. There's a lot of reasons for that - health issues (surprised?), other people's health issues, summer with the kids, life in general. And there was SisterCh's wedding, which was nearly two weeks ago, and I am still recovering from it.
The wedding itself - the whole getting married part - was wonderful and sweet and short and simple, and I couldn't be happier for my sister and new brother in law.
Everything else? The planning and the crafting and the being the peacekeeper and the living in a family of 'always lates'? Was capital K Krazy. It was like drowning in a pool of anxiety for days at a time, and not knowing how to come up for air... as if I had dove into the deep end of an actual pool and someone through the plastic pool cover on while I was floating underwater: It felt like I spent a lot of time frantically clawing at it, digging for a way to surface. I don't exactly know why it was like that - some of it was me, some of it was other people, some of it was those stupid health issues I was talking about, and some of it just falls into the 'holy shit: this is my life?' category - but it was heavy, and - as much as I love my sisters & love to be able to help them out - I am so glad that nobody else is engaged right now. We'll talk about it more later, for sure, since I've been dissecting it in my head ever since, and trying to learn from my mistakes, but I'm too exhausted to go into it in detail tonight.
I am once again in recuperation mode, but there's a lot of unavoidable stresses that are making that pretty difficult. I'm getting there, though, slowly but surely. In the meantime, how about a picture of the happy couple, just so neither of us leaves with the impression that it was a completely horrible experience? (It really wasn't: I need to do a better job explaining soon, so it doesn't seem like it. Promise it won't be a month before I come back!)
Saturday, June 25, 2011
It was strange: There was a perverse comfort in inertia.*
So I'm having a bit of a hard time lately, and I'll tell you, it is not becoming. It's one of those times when there's a lot of stuff just underneath , and you spend a lot of your time (or at least I do), measuring your words and acts carefully, because you're sure that what's underneath could come bursting through at any moment, and that it would not be a good thing if that happened.
Some of the underneath stuff is not my own, just mine to figure out how to navigate - all of that fun (and incredibly high-pressure, fast-paced) stuff related to putting together a wedding with a bride who has a bit of difficulty making choices (and then sticking with them); the trying to incorporate the opinions of everysingleperson ever, apparently; and two sisters with a tentative truce and a still rocky understanding of each other who are trying to collaborate on about 400 different aspects of a wedding in a little over a month. So there's that.
And then there's all my under the surface stuff, like the fact that Soon-to-be Sister-in-law sort of decided that it wasn't worth it to bring the kids up here anymore, only she didn't come right out and say that so I'd get up in the morning expecting them and instead find a text saying no one was coming. Although we've renegotiated for the summer, and she told SisterJ that she did it because she thought bringing them up here was burdening us, I was left with a bad taste in my mouth and the feeling that all the effort and time I spend with the kids (because I want to!) is not really worth all that much to her, while here I thought I was helping to raise them for the past eleven years. I guess I am more hurt by that then I let on, even though I know she didn't mean to hurt my feelings, and that - in general - they both appreciate the time we watch the kids.
And, of course LilGirl will be starting kindergarten in the fall, so that means our twice a week commitment with her will be ending anyways, so I was trying to pack as much fun stuff into the summer as I could, because once school starts, we're all weekend sleepovers, and that's just not as much time. LilGirl is not the only one disappearing come the fall - SisterK will be in Iowa to go to grad school in August (right after the wedding), and has been off gallivanting on trips to England and Vermont since she graduated so that I have barely seen her.
I have an uncle, who I am not very close to but still love, who is suffering from cancer and seems unlikely to make it to through the summer, and it also seems highly unlikely that I will get anybody to go up to where he lives with me, (and once there, I'm pretty sure I can't make it into his antique cabin because of stairs). Hell, I can't even get people to walk next door for me to deliver a pie I spent three hours baking (squeezing lemons is not in my skill set), which is another issue simmering underneath everything else. It also turns out that I am eligible for yet another social service program, which might change both my financial contributions to the house and the responsibilities that my mom would have when it comes to helping me out. Unfortunately, our current working relationship is not working out as it is, mostly because she's not been in the best health either (physically or mentally), and it is making it so that I don't always get the help I need. Having this between us, when we are so close, is hurtful, because I wind up feeling both resentful - not that she's not well enough to do something, but that she insists she is and then it doesn't get done - and trapped - we depend on the money my mom makes as my PCA, so if I try to give some of her hours to someone else who could do some of the less personal, errand running type stuff, then I'm taking away money that our family needs; and I assume that she feels pressured and misunderstood, because I am just not ok with the things that are getting left behind. It's very stressful, as you can imagine.
Along with that are some new health issues - not setbacks, exactly, but issues - that have kind of shocked me, and left me unsure of what to do next. It is likely that my body (jokester that it is) is just playing tricks on me, but either way, it's starting to seriously complicate matters, and that is not appreciated. Not to mention, although I hate hate hate the analogy of the biological clock, that certain ticking numbers, including my age and hormone levels (never mind my single & sick status), are making me wish I'd gotten knocked up at fifteen, before I got sick, so that I wouldn't have to worry about it maybe never happening now. (And even just typing that makes me literally sick to my stomach, which is why I am avoiding thinking about it as much as possible.) And of course, every one I know is pregnant. (Well, two cousins, two friends, a zillion bloggers - it just feels like everybody.)
And, if you've been here any length of time, you know that when I'm avoiding things, I take up residence solely inside my own head. Where I can either choose to zombie out - play a few "click a lot and blow things up" games, reread a series full of happy endings, Facebook stalk - or swim in the muddle and try to salvage some sense. Can you guess which choice I have been making lately? If I told you that the Bridgertons are doing just as well as they were the last time I read their books, and that I have a new high score on Big Money, would that help you out at all?
Yes, I've been zombie-ing out, which includes, of course, letting the blog fall semi-silent because "what the hell am I going to say that makes any sense to anybody?" But, as is often the case, it just took me a while to get things into place, just enough, that I could write about them some. So here's some of the stuff that's floating around underneath for me, thanks for letting me vent a bit.
I promise tomorrow's post will be full of ... something else. Hopefully a good something else. :) Have a great weekend you guys.
*Jeremy Groopman, The Anatomy of Hope
Some of the underneath stuff is not my own, just mine to figure out how to navigate - all of that fun (and incredibly high-pressure, fast-paced) stuff related to putting together a wedding with a bride who has a bit of difficulty making choices (and then sticking with them); the trying to incorporate the opinions of everysingleperson ever, apparently; and two sisters with a tentative truce and a still rocky understanding of each other who are trying to collaborate on about 400 different aspects of a wedding in a little over a month. So there's that.
And then there's all my under the surface stuff, like the fact that Soon-to-be Sister-in-law sort of decided that it wasn't worth it to bring the kids up here anymore, only she didn't come right out and say that so I'd get up in the morning expecting them and instead find a text saying no one was coming. Although we've renegotiated for the summer, and she told SisterJ that she did it because she thought bringing them up here was burdening us, I was left with a bad taste in my mouth and the feeling that all the effort and time I spend with the kids (because I want to!) is not really worth all that much to her, while here I thought I was helping to raise them for the past eleven years. I guess I am more hurt by that then I let on, even though I know she didn't mean to hurt my feelings, and that - in general - they both appreciate the time we watch the kids.
And, of course LilGirl will be starting kindergarten in the fall, so that means our twice a week commitment with her will be ending anyways, so I was trying to pack as much fun stuff into the summer as I could, because once school starts, we're all weekend sleepovers, and that's just not as much time. LilGirl is not the only one disappearing come the fall - SisterK will be in Iowa to go to grad school in August (right after the wedding), and has been off gallivanting on trips to England and Vermont since she graduated so that I have barely seen her.
I have an uncle, who I am not very close to but still love, who is suffering from cancer and seems unlikely to make it to through the summer, and it also seems highly unlikely that I will get anybody to go up to where he lives with me, (and once there, I'm pretty sure I can't make it into his antique cabin because of stairs). Hell, I can't even get people to walk next door for me to deliver a pie I spent three hours baking (squeezing lemons is not in my skill set), which is another issue simmering underneath everything else. It also turns out that I am eligible for yet another social service program, which might change both my financial contributions to the house and the responsibilities that my mom would have when it comes to helping me out. Unfortunately, our current working relationship is not working out as it is, mostly because she's not been in the best health either (physically or mentally), and it is making it so that I don't always get the help I need. Having this between us, when we are so close, is hurtful, because I wind up feeling both resentful - not that she's not well enough to do something, but that she insists she is and then it doesn't get done - and trapped - we depend on the money my mom makes as my PCA, so if I try to give some of her hours to someone else who could do some of the less personal, errand running type stuff, then I'm taking away money that our family needs; and I assume that she feels pressured and misunderstood, because I am just not ok with the things that are getting left behind. It's very stressful, as you can imagine.
Along with that are some new health issues - not setbacks, exactly, but issues - that have kind of shocked me, and left me unsure of what to do next. It is likely that my body (jokester that it is) is just playing tricks on me, but either way, it's starting to seriously complicate matters, and that is not appreciated. Not to mention, although I hate hate hate the analogy of the biological clock, that certain ticking numbers, including my age and hormone levels (never mind my single & sick status), are making me wish I'd gotten knocked up at fifteen, before I got sick, so that I wouldn't have to worry about it maybe never happening now. (And even just typing that makes me literally sick to my stomach, which is why I am avoiding thinking about it as much as possible.) And of course, every one I know is pregnant. (Well, two cousins, two friends, a zillion bloggers - it just feels like everybody.)
And, if you've been here any length of time, you know that when I'm avoiding things, I take up residence solely inside my own head. Where I can either choose to zombie out - play a few "click a lot and blow things up" games, reread a series full of happy endings, Facebook stalk - or swim in the muddle and try to salvage some sense. Can you guess which choice I have been making lately? If I told you that the Bridgertons are doing just as well as they were the last time I read their books, and that I have a new high score on Big Money, would that help you out at all?
Yes, I've been zombie-ing out, which includes, of course, letting the blog fall semi-silent because "what the hell am I going to say that makes any sense to anybody?" But, as is often the case, it just took me a while to get things into place, just enough, that I could write about them some. So here's some of the stuff that's floating around underneath for me, thanks for letting me vent a bit.
I promise tomorrow's post will be full of ... something else. Hopefully a good something else. :) Have a great weekend you guys.
*Jeremy Groopman, The Anatomy of Hope
Friday, April 08, 2011
Postage Stamp Island...
As much as my brother-in-law might laugh at me for attempting to rap (or, more accurately 'sing a rap song',) my current life resembles nothing so much as the line from Grandmaster Flash's The Message "Don't push me, cuz I'm Close. To. The. Edge. (I'm trying not to lose my head)"
My pain has been turning it up to eleven lately, following a couple of infection setbacks and my dumb insistence that I do not need as much down time as my body thinks it requires (because "downtime is boring!" ... So is suffering, you ass). Because of that, I am living with the near constant feeling that my muscles and bones are attempting to burst through my skin, as if I've taken some excess Skele-gro* without the accompanying broken bones. You know how on the Hulk (original TV show Hulk), his eyes would glow green, and then his clothes would start falling to pieces as he just expanded into this terrifying green monster? Yeah, it basically feels like that, complete with bonus "Hulk Smash!!!!#!@!" anger because who the hell wants to feel like that? It hurts to breathe, or move, or put clothes on - I literally cried the other day, when we had to leave the house and I had to put on a bra. (And yes, I know it is beyond stupid to put whether or not you look good over whether or not a piece of clothing makes you hurt so much you cry, but I can't get over it: Leaving the house without my bra makes me feel naked and not in a good way.) Sleep is a joke, because rolling over in bed is as dangerous as rolling through a field of landmines, and the other day I just got up and baked cookies at 2 in the morning because if I laid there for one more minute, I was going to flip out.
This is usually the point where my readers who don't have chronic illnesses say something like "Why don't you call your doctor and tell him/her that you're hurting so much?" And I appreciate the thought, I really do, but here's the thing: My doctor's know. They know, and it's not that they don't care, because they do - it's that they don't have the answer for me. They just don't know it. They keep trying - I am, in fact on my third new medication trial in as many months - but if you don't know the answer, you just don't. So calling them and telling them that I feel like the Hulk, it doesn't get either of us very far. "Give the meds more time to work" they say. Or "Did you take the narcotics I gave you - you don't have to be a hero" Right: because wanting to be present, even vaguely in my own life, is heroic. No - I am medicated to the gills, as much as I can be without just being completely out of it (and I can't guarantee that either, sometimes), but (so far), we just don't know the answer.
So there's that. But it's not just that: I feel near the edge on just about everything.
While I won't be homeless if the government decides to go offline this weekend (as I know some will), if it continues for any length of time I will be medication-less, which, for me is quite a serious condition. (I depend on my government to allow me to breathe: what do you depend on it for?) There's no way I could afford the $400 required for a 30 day supply of one of my medications, let alone the over a thousand dollars that would be their sum total - and that's just for the basics, not the 'optional' things like the stuff I use to treat my allergies or the cream I use when the allergy stuff doesn't work. Financial worries would start building if the government was shut down for any length of time, but that's biting off more worries than I need, at this point. But we're there - at the edge.
I'm at the edge with my family, with sisters who are so hurt and angry and frustrated/ing that I just feel like everything I do is wrong. With my mom who's obviously hanging on to her own edge, but won't admit it. With my dad who's having problems at work and thinks it's funny to come home early and say things like "I got fired." (Hint: it is not funny.) With pregnant cousins and non pregnant me, with sisters moving to freaking Iowa or getting married (with no plans, yet!) in the fall, and brothers who don't see the glory of their own children. With a grandmother who asks you for help picking out her funeral clothes when you go over to visit her, in the same breath that she tells you how well she is doing. ("It's not morbid: it's practical. I'm going to be 94." Well, let's be the opposite of practical, then, shall we?) With best friends who don't call or write, and with myself for not calling or writing.
I'm just so close to the edge that it feels like everywhere I turn, there's another edge. Like I woke up on an island, all of the sudden, instead of a continent. Like there's no place safe.
And yet, between me and those edges are little girls with curly hair who say things like "My tooth is loose, even though you can't feel it move," because the girl down the street got money from the "Tooth Bunny". There's 11-yr-olds who direct their own 60 second movie clips on low res digital cameras, that include such action packed sequences as "Fort elephante & how it crumbled!" There's three derpy fluffy bunnies made out of pom-poms and googly eyes, named KC, Sunshine & Band. There's meringue cookies at two o'clock in the morning, and the fact that I can make them sans recipe. There's the fact that the nurse at Zack's office, the much loved Maryellen, worked for five days to get the approval I needed for this latest medication, even though the MassHealth people were being assholes about it. There's Facebook statuses from people far away that I miss very much. There's the fact that my window is open right now, even though it's freaking April. There's all these words typed into little boxes all over the country that show up on my screen, right here on my bed. There's a lot of stuff that pushes me back, and I try to remember it.
The edges are still there though, and my island's getting smaller.
Print Available Here
*Shout outs** to Harry Potter, the Hulk, KC & The Sunshine Band and Grandmaster Flash in the same blog post? Yeah, I'm complicated.
** Using the term 'shout-out'? No, you're really not.
My pain has been turning it up to eleven lately, following a couple of infection setbacks and my dumb insistence that I do not need as much down time as my body thinks it requires (because "downtime is boring!" ... So is suffering, you ass). Because of that, I am living with the near constant feeling that my muscles and bones are attempting to burst through my skin, as if I've taken some excess Skele-gro* without the accompanying broken bones. You know how on the Hulk (original TV show Hulk), his eyes would glow green, and then his clothes would start falling to pieces as he just expanded into this terrifying green monster? Yeah, it basically feels like that, complete with bonus "Hulk Smash!!!!#!@!" anger because who the hell wants to feel like that? It hurts to breathe, or move, or put clothes on - I literally cried the other day, when we had to leave the house and I had to put on a bra. (And yes, I know it is beyond stupid to put whether or not you look good over whether or not a piece of clothing makes you hurt so much you cry, but I can't get over it: Leaving the house without my bra makes me feel naked and not in a good way.) Sleep is a joke, because rolling over in bed is as dangerous as rolling through a field of landmines, and the other day I just got up and baked cookies at 2 in the morning because if I laid there for one more minute, I was going to flip out.
This is usually the point where my readers who don't have chronic illnesses say something like "Why don't you call your doctor and tell him/her that you're hurting so much?" And I appreciate the thought, I really do, but here's the thing: My doctor's know. They know, and it's not that they don't care, because they do - it's that they don't have the answer for me. They just don't know it. They keep trying - I am, in fact on my third new medication trial in as many months - but if you don't know the answer, you just don't. So calling them and telling them that I feel like the Hulk, it doesn't get either of us very far. "Give the meds more time to work" they say. Or "Did you take the narcotics I gave you - you don't have to be a hero" Right: because wanting to be present, even vaguely in my own life, is heroic. No - I am medicated to the gills, as much as I can be without just being completely out of it (and I can't guarantee that either, sometimes), but (so far), we just don't know the answer.
So there's that. But it's not just that: I feel near the edge on just about everything.
While I won't be homeless if the government decides to go offline this weekend (as I know some will), if it continues for any length of time I will be medication-less, which, for me is quite a serious condition. (I depend on my government to allow me to breathe: what do you depend on it for?) There's no way I could afford the $400 required for a 30 day supply of one of my medications, let alone the over a thousand dollars that would be their sum total - and that's just for the basics, not the 'optional' things like the stuff I use to treat my allergies or the cream I use when the allergy stuff doesn't work. Financial worries would start building if the government was shut down for any length of time, but that's biting off more worries than I need, at this point. But we're there - at the edge.
I'm at the edge with my family, with sisters who are so hurt and angry and frustrated/ing that I just feel like everything I do is wrong. With my mom who's obviously hanging on to her own edge, but won't admit it. With my dad who's having problems at work and thinks it's funny to come home early and say things like "I got fired." (Hint: it is not funny.) With pregnant cousins and non pregnant me, with sisters moving to freaking Iowa or getting married (with no plans, yet!) in the fall, and brothers who don't see the glory of their own children. With a grandmother who asks you for help picking out her funeral clothes when you go over to visit her, in the same breath that she tells you how well she is doing. ("It's not morbid: it's practical. I'm going to be 94." Well, let's be the opposite of practical, then, shall we?) With best friends who don't call or write, and with myself for not calling or writing.
I'm just so close to the edge that it feels like everywhere I turn, there's another edge. Like I woke up on an island, all of the sudden, instead of a continent. Like there's no place safe.
And yet, between me and those edges are little girls with curly hair who say things like "My tooth is loose, even though you can't feel it move," because the girl down the street got money from the "Tooth Bunny". There's 11-yr-olds who direct their own 60 second movie clips on low res digital cameras, that include such action packed sequences as "Fort elephante & how it crumbled!" There's three derpy fluffy bunnies made out of pom-poms and googly eyes, named KC, Sunshine & Band. There's meringue cookies at two o'clock in the morning, and the fact that I can make them sans recipe. There's the fact that the nurse at Zack's office, the much loved Maryellen, worked for five days to get the approval I needed for this latest medication, even though the MassHealth people were being assholes about it. There's Facebook statuses from people far away that I miss very much. There's the fact that my window is open right now, even though it's freaking April. There's all these words typed into little boxes all over the country that show up on my screen, right here on my bed. There's a lot of stuff that pushes me back, and I try to remember it.
The edges are still there though, and my island's getting smaller.
Print Available Here *Shout outs** to Harry Potter, the Hulk, KC & The Sunshine Band and Grandmaster Flash in the same blog post? Yeah, I'm complicated.
** Using the term 'shout-out'? No, you're really not.
Tuesday, March 08, 2011
"... handing tickets out for God"
I started writing (one day last week) about the Jesus Freaks who stopped by with their version of the "Good News" and somehow wandered way off topic and started going on and on about how I used to be a Jesus Freak myself, and therefore I don't mean the term in any offensive way, but more in the way former band geeks talk about current band geeks or ex-goths talk about emo kids: You've been there, so you know, and almost feel a sort of kinship, but you're really glad you're not there anymore. I don't think there's anything worse for a believer than a former-believer: all of my sarcasm and surety that I was made a fool for so many years is always right there, and I'm sorry if sometimes it slips out. I try not to be patronizing - I really am glad for you that you still believe - but when they start trying to convince me, all bets are usually off.
So that's the way the post was going, and then I realized that I'd written that post before - multiple times. Yes: the Catholic Church and I used to be BFFs and yes; I could probably write another 17 posts about that, but that wasn't the post I sat down to write, so it wound up in the draft folder (like a million other posts: seriously - my draft folder is a scary place). And now I'm back, attempting to tell you what it was about the Jesus Freaks that pissed me off .
It took me a while to put my finger on it myself, but eventually it boils down to this: It is the sense of judgment I feel when they're telling me how easy it is to fix who I am.
Here's the thing: Remember in the fall, how when I was living at Grandmother's house, helping her with her post-stroke recovery, things here at home were progressing on the 'build a ramp so NTE can get into the house more easily' front? Well, now we have this beautiful ramp that's slippery as hell in the winter, and takes up our entire front yard but makes my life about 200 times easier. And yet: it is a beacon for the 'people of the Lord.'
While we were building it, a woman walked by and asked my dad what the final product was going to be. When he explained that it was going to be a wheelchair ramp, she said "I'm so sorry," then returned a few days later to drop off some rosary beads and a scapula she thought I might like. I found them on my bed when I came home for a shower that week, and my dad didn't understand why I didn't think it was the 'sweetest neighborly' thing for her to do.
Twice (that I know of) since then, we've had various forms of preachers come to the door: The first time, the guy was Mega-pushy, and I felt no compunction about not letting him in the house or giving him a chance to speak: I kept him on the porch, while he started his spiel about 'those who turn to Jesus will find a way with him,' and how 'putting my feet on the path would help them walk again.' I know that you all know me well enough that I can admit I was sorely tempted to just walk out onto the porch just to see the look on his face, no matter that I would've fallen down eventually, or that it would've hurt like hell: I still am kinda sad that I didn't, because the "OMG: I AM TOTALLY WITNESSING A MIRACLE" moment would have changed one of our lives forever. ( I know, I am damned to hell, so I might as well enjoy it, right?)
This latest preacher though, was a very nice gentleman (and he came with a silent friend), and he specifically said "I don't want you to let us in, I'd just like to tell you some things, if that's alright with you. " Well now, I'm not a heartless bitch, so I opened the screen door and gave him the ok, give me your best lines, preacher-man, and I promise not to laugh. (Again: I'm good with you believing, but once you're trying to get me to believe, I can't promise that I'm going to be able to hide my skepticism.) So he starts off pretty swell, talking about God's willingness to help people, and how it was his job to try to find those that most need God's help and bring them his Word.
And then this well meaning fellow, with his quiet and (I could honestly tell) earnest sense of caring starts talking about miracles, and Jesus making the blind see and the lame walk, and I'll tell you. it took everything in me not to slam the door in his face. I just - can't hear it. I just... I don't even know how to explain how badly that makes me feel, how irritated it makes me just to hear it.
Just to have that experience of - once again - being a person, going about their normal day...I was making breakfast when the doorbell rang, playing with my 1 yr-old nephew and chatting with my sister... when all of the sudden someone interrupts your life to tell you how you are just not right, just not good enough the way you are, just not the way a person should be. I am not saying that that is what he said , because, again, he was kind of a sweet guy, but that is the way he made me feel. I had to sit there and be irritated and frustrated and ashamed, all because - in society's eyes, and I guess in 'God's' eyes too - there was something about me that was just wrong. Something that called for miracles and saving and the power of God.
That me, just being me, requires the intercession of God on my behalf, in order for me to be fixed? Pisses me the fuck off, I gotta tell you. Of course I wouldn't thumb my nose at a miraculous healing, should one decide to take place, but you know what? I'm not broken right now, or maybe I am, but not in the ways that you think I am. And if I am it's none of your damn business... I'm not asking to be saved just by virtue of living as who I am. Just by having improved my house to the point that I can finally get in and out of it on my own, I'm not giving you the right to comment on my life.
It's something I get a lot of, in a lot of random ways: people who see me 'walk' the steps to my chair and tell me I'm not sick enough to the handicapped parking placard, or strangers who tell me they'll pray for me when I'm out in public. When you're visibly disabled, everybody's got the right to comment suddenly. I didn't ask you for your opinion on what I'm eating - the fact that I'm having a cheeseburger is not in fact the reason I'm in this chair, but thanks for telling me all about how you stopped eating meat and your rash went away. I don't have to justify my applying for aid to some arsehole cousin who thinks that all social welfare programs are tools of the Communist Party, and I'm lucky that I get to spend his "tax money" on my "frivolities."
All I am trying to do here is live my life, and as nice as that preacher was, when he left behind a scripture for me to read and "think over with your heart", I was all too glad to close the door behind him. I appreciate his belief that I could use some blessings (because, holy hell, yes, I could use some blessings), but I don't like the assumptions he made about who I am, or the life I live, in order for me to earn his blessings. It feels like pity. It feels like ableism. It makes me feel like less than.
So I know I won't be opening the door to any more preachers, because their blessings tend to feel like curses, and I have enough of those. I'll take all the prayers and warm thoughts and fairy dust you want to send me, but don't assume that I need them because I'm in this chair... I'd much rather have a family that was kind to each other than a body that worked correctly. Or a baby that I knew I could provide for. Or an understanding of how to be happy, regardless.
I'd like to be healthy, sure: but I'm living my life the way it is, and that's not sad, or in need of fixing, or less than anybody elses, so don't make me feel like it is.
So that's the way the post was going, and then I realized that I'd written that post before - multiple times. Yes: the Catholic Church and I used to be BFFs and yes; I could probably write another 17 posts about that, but that wasn't the post I sat down to write, so it wound up in the draft folder (like a million other posts: seriously - my draft folder is a scary place). And now I'm back, attempting to tell you what it was about the Jesus Freaks that pissed me off .
It took me a while to put my finger on it myself, but eventually it boils down to this: It is the sense of judgment I feel when they're telling me how easy it is to fix who I am.
Here's the thing: Remember in the fall, how when I was living at Grandmother's house, helping her with her post-stroke recovery, things here at home were progressing on the 'build a ramp so NTE can get into the house more easily' front? Well, now we have this beautiful ramp that's slippery as hell in the winter, and takes up our entire front yard but makes my life about 200 times easier. And yet: it is a beacon for the 'people of the Lord.'
While we were building it, a woman walked by and asked my dad what the final product was going to be. When he explained that it was going to be a wheelchair ramp, she said "I'm so sorry," then returned a few days later to drop off some rosary beads and a scapula she thought I might like. I found them on my bed when I came home for a shower that week, and my dad didn't understand why I didn't think it was the 'sweetest neighborly' thing for her to do.
Twice (that I know of) since then, we've had various forms of preachers come to the door: The first time, the guy was Mega-pushy, and I felt no compunction about not letting him in the house or giving him a chance to speak: I kept him on the porch, while he started his spiel about 'those who turn to Jesus will find a way with him,' and how 'putting my feet on the path would help them walk again.' I know that you all know me well enough that I can admit I was sorely tempted to just walk out onto the porch just to see the look on his face, no matter that I would've fallen down eventually, or that it would've hurt like hell: I still am kinda sad that I didn't, because the "OMG: I AM TOTALLY WITNESSING A MIRACLE" moment would have changed one of our lives forever. ( I know, I am damned to hell, so I might as well enjoy it, right?)
This latest preacher though, was a very nice gentleman (and he came with a silent friend), and he specifically said "I don't want you to let us in, I'd just like to tell you some things, if that's alright with you. " Well now, I'm not a heartless bitch, so I opened the screen door and gave him the ok, give me your best lines, preacher-man, and I promise not to laugh. (Again: I'm good with you believing, but once you're trying to get me to believe, I can't promise that I'm going to be able to hide my skepticism.) So he starts off pretty swell, talking about God's willingness to help people, and how it was his job to try to find those that most need God's help and bring them his Word.
And then this well meaning fellow, with his quiet and (I could honestly tell) earnest sense of caring starts talking about miracles, and Jesus making the blind see and the lame walk, and I'll tell you. it took everything in me not to slam the door in his face. I just - can't hear it. I just... I don't even know how to explain how badly that makes me feel, how irritated it makes me just to hear it.
Just to have that experience of - once again - being a person, going about their normal day...I was making breakfast when the doorbell rang, playing with my 1 yr-old nephew and chatting with my sister... when all of the sudden someone interrupts your life to tell you how you are just not right, just not good enough the way you are, just not the way a person should be. I am not saying that that is what he said , because, again, he was kind of a sweet guy, but that is the way he made me feel. I had to sit there and be irritated and frustrated and ashamed, all because - in society's eyes, and I guess in 'God's' eyes too - there was something about me that was just wrong. Something that called for miracles and saving and the power of God.
That me, just being me, requires the intercession of God on my behalf, in order for me to be fixed? Pisses me the fuck off, I gotta tell you. Of course I wouldn't thumb my nose at a miraculous healing, should one decide to take place, but you know what? I'm not broken right now, or maybe I am, but not in the ways that you think I am. And if I am it's none of your damn business... I'm not asking to be saved just by virtue of living as who I am. Just by having improved my house to the point that I can finally get in and out of it on my own, I'm not giving you the right to comment on my life.
It's something I get a lot of, in a lot of random ways: people who see me 'walk' the steps to my chair and tell me I'm not sick enough to the handicapped parking placard, or strangers who tell me they'll pray for me when I'm out in public. When you're visibly disabled, everybody's got the right to comment suddenly. I didn't ask you for your opinion on what I'm eating - the fact that I'm having a cheeseburger is not in fact the reason I'm in this chair, but thanks for telling me all about how you stopped eating meat and your rash went away. I don't have to justify my applying for aid to some arsehole cousin who thinks that all social welfare programs are tools of the Communist Party, and I'm lucky that I get to spend his "tax money" on my "frivolities."
All I am trying to do here is live my life, and as nice as that preacher was, when he left behind a scripture for me to read and "think over with your heart", I was all too glad to close the door behind him. I appreciate his belief that I could use some blessings (because, holy hell, yes, I could use some blessings), but I don't like the assumptions he made about who I am, or the life I live, in order for me to earn his blessings. It feels like pity. It feels like ableism. It makes me feel like less than.
So I know I won't be opening the door to any more preachers, because their blessings tend to feel like curses, and I have enough of those. I'll take all the prayers and warm thoughts and fairy dust you want to send me, but don't assume that I need them because I'm in this chair... I'd much rather have a family that was kind to each other than a body that worked correctly. Or a baby that I knew I could provide for. Or an understanding of how to be happy, regardless.
I'd like to be healthy, sure: but I'm living my life the way it is, and that's not sad, or in need of fixing, or less than anybody elses, so don't make me feel like it is.
Saturday, January 29, 2011
"Being alone is not the most awful thing in the world...
You make out to do lists - reorganize linen cupboard, learn two sonnets. You dole out little treats to yourself - slices of ice cream cake, concerts at Wigmore Hall. And then, every once in a while, you wake up... and think I cannot do this anymore. I cannot pull myself together again and spend the next fifteen hours of wakefullness fending off the fact of my own misery."*
Today turned out to not be my best day ever... My original plan was to spend the day shopping with my mom and my sister, maybe have lunch, just be out in the world. (And, not incidentally, away from our house where my dad had declared he would be having a "taking care of me" weekend, the prospect of which is frightening at the very least.) But then my sister didn't feel up to going, so it was just me and my mom, who was in an off mood for whatever reason. But, equipped with lists and coupons and I even remembered to bring my own basket (mine is made of cloth as opposed to the ones in the stores which hurt like hell on my lap), we headed to our first scheduled stop, the craft store.
The store turned out to be wicked crowded and incredibly hot. And about 10 minutes after we got there, I knew that things were going wrong with me: There were a few too many smells, and too much noise, and it was so hot. I started getting weak and bumping into things, and even looking at my list, I was having a hard time concentrating on what I was looking for. I spent a while waiting for my mom to finish up her shopping, and trying not to slide out of the chair or topple over. I don't know why - it just happens like that sometimes. That's one of the things with CFIDS: you can't tell/plan when/why things are going to go to hell. It was so bad I thought I was going to pass out in the store, and waited outside while my mom went through line (she would not approve of that behavior, had she known).
I got the things I needed at the craft store, but between the intense heat and whatever was going on with my body, I was just done. Plum worn out. So instead of a full day of shopping and lunch and being out of the house, we headed home after less than an hour, where I was barely able to crawl back into bed.
A couple of hours of resting and Buffy marathoning later, I was feeling a bit better (less spinning head, more umph), so I turned the computer back on and started checking out the usual haunts. (For the record, those are basically my Reader, my mail, Facebook for chatting, and whatever other tabs I happened to not have finished the last time I signed off.) Reading through my FB activity feed, I see that one of my college friends has a new profile picture up, so I clicked on it.
And there sat nine little children on a couch, posing (as nicely as 9 children under 7 can) for the camera. Nine little children of all the girls I was most friendly with in college, our group of "Alumni Girls." The children of my closest friends, sitting on the couch of one of those friends, about oh 12 minutes down the road from where I am. Which means all of their mothers are sitting there too, and that I was not invited.
And I've missed out on a lot of things over the years - birthday parties and get togethers and weddings and whatnot - and I've not been invited to a few things too, as some of the girls and I hadn't seen each other for years, and grew further apart as time continued to pass. I know that, and, while it's hurt to have to miss things for health reasons, or because I just can't go, I've never really felt unwelcome before, never felt like I was deliberately not included.
Till today.
And I know that's not what it will wind up being - that there's no way anybody thought "Hey, let's not include NTE, because she's such a bitch," or whatever. I know that's not it. The way I figure it either my name never came up because all of my friends were arranging a playdate for their kids, and I don't have any kids, or they just decided not to ask me because the girl whose house it's at is inaccessible to me. So either I was forgotten because I'm not a mom, or I was not asked because they assumed I couldn't make it - but neither of those reasons really makes me feel all that much better.
And looking at that picture, of all those little smiling faces and bald heads and stuffed animals really just reminds me of how much I don't have, of how much I'm missing out on.
I don't have the family, or the kids. And I don't have a bunch of girlfriends that I can just have over to the house (I also don't have) whenever I want. I don't even really have anybody, outside of this computer, who will understand what it's like to not have those things. To want them so badly and just not be able to have them.
To instead be sitting here, with this body that won't even let you go unaided the 6 feet it takes to get into the bathroom, wondering what the fuck happened to the life you were supposed to have. To instead be sitting here in tears staring at nine kids - some of whom you've never even met, and others who call you auntie honorarily - and wishing there was a tenth. Wishing that their moms had thought to call you and say "Sorry you can't make it, but we'll be down the street today, want us to drop by after?" Wishing I'd managed being out in the world for longer than 45 minutes without having to rest for four hours. Wishing I knew how to get from where I am to where I want to be. Wishing I'd never seen the damn picture, and just kept watching Buffy instead, even if it was the one with the praying mantis teacher, and I've seen it 19 times before.
Just wishing.
*Zoe Heller, What Was She Thinking
Today turned out to not be my best day ever... My original plan was to spend the day shopping with my mom and my sister, maybe have lunch, just be out in the world. (And, not incidentally, away from our house where my dad had declared he would be having a "taking care of me" weekend, the prospect of which is frightening at the very least.) But then my sister didn't feel up to going, so it was just me and my mom, who was in an off mood for whatever reason. But, equipped with lists and coupons and I even remembered to bring my own basket (mine is made of cloth as opposed to the ones in the stores which hurt like hell on my lap), we headed to our first scheduled stop, the craft store.
The store turned out to be wicked crowded and incredibly hot. And about 10 minutes after we got there, I knew that things were going wrong with me: There were a few too many smells, and too much noise, and it was so hot. I started getting weak and bumping into things, and even looking at my list, I was having a hard time concentrating on what I was looking for. I spent a while waiting for my mom to finish up her shopping, and trying not to slide out of the chair or topple over. I don't know why - it just happens like that sometimes. That's one of the things with CFIDS: you can't tell/plan when/why things are going to go to hell. It was so bad I thought I was going to pass out in the store, and waited outside while my mom went through line (she would not approve of that behavior, had she known).
I got the things I needed at the craft store, but between the intense heat and whatever was going on with my body, I was just done. Plum worn out. So instead of a full day of shopping and lunch and being out of the house, we headed home after less than an hour, where I was barely able to crawl back into bed.
A couple of hours of resting and Buffy marathoning later, I was feeling a bit better (less spinning head, more umph), so I turned the computer back on and started checking out the usual haunts. (For the record, those are basically my Reader, my mail, Facebook for chatting, and whatever other tabs I happened to not have finished the last time I signed off.) Reading through my FB activity feed, I see that one of my college friends has a new profile picture up, so I clicked on it.
And there sat nine little children on a couch, posing (as nicely as 9 children under 7 can) for the camera. Nine little children of all the girls I was most friendly with in college, our group of "Alumni Girls." The children of my closest friends, sitting on the couch of one of those friends, about oh 12 minutes down the road from where I am. Which means all of their mothers are sitting there too, and that I was not invited.
And I've missed out on a lot of things over the years - birthday parties and get togethers and weddings and whatnot - and I've not been invited to a few things too, as some of the girls and I hadn't seen each other for years, and grew further apart as time continued to pass. I know that, and, while it's hurt to have to miss things for health reasons, or because I just can't go, I've never really felt unwelcome before, never felt like I was deliberately not included.
Till today.
And I know that's not what it will wind up being - that there's no way anybody thought "Hey, let's not include NTE, because she's such a bitch," or whatever. I know that's not it. The way I figure it either my name never came up because all of my friends were arranging a playdate for their kids, and I don't have any kids, or they just decided not to ask me because the girl whose house it's at is inaccessible to me. So either I was forgotten because I'm not a mom, or I was not asked because they assumed I couldn't make it - but neither of those reasons really makes me feel all that much better.
And looking at that picture, of all those little smiling faces and bald heads and stuffed animals really just reminds me of how much I don't have, of how much I'm missing out on.
I don't have the family, or the kids. And I don't have a bunch of girlfriends that I can just have over to the house (I also don't have) whenever I want. I don't even really have anybody, outside of this computer, who will understand what it's like to not have those things. To want them so badly and just not be able to have them.
To instead be sitting here, with this body that won't even let you go unaided the 6 feet it takes to get into the bathroom, wondering what the fuck happened to the life you were supposed to have. To instead be sitting here in tears staring at nine kids - some of whom you've never even met, and others who call you auntie honorarily - and wishing there was a tenth. Wishing that their moms had thought to call you and say "Sorry you can't make it, but we'll be down the street today, want us to drop by after?" Wishing I'd managed being out in the world for longer than 45 minutes without having to rest for four hours. Wishing I knew how to get from where I am to where I want to be. Wishing I'd never seen the damn picture, and just kept watching Buffy instead, even if it was the one with the praying mantis teacher, and I've seen it 19 times before.
Just wishing.
*Zoe Heller, What Was She Thinking
Wednesday, November 10, 2010
The I in illness is isolation, and the crucial letters in wellness are we*
Day 10: Someone you need to let go or wish you didn't know
I wish I didn't know so many doctors. Nothing personal, but I could really do with knowing less of them, (or none at all?) and, today, one in particular. One who is doing a whole lot of nuthin, and contributing such gems as "stress can cause hives, you know" or "you're so young to be in a wheelchair" but nothing, that might be considered even slightly, you know, helpful. Not a substantive suggestion in the bunch, just a lot of babbling about "if it gets worse, maybe you should come in and see me..." Even as she was implying that coming in to see her would net me absolutely nothing in the way of a result.
And after sixteen years, I think I definitely need to be quicker to let go of doctors who - while not perhaps actively doing me harm - are also not helping me. Regardless of the fact that it is ridiculous and annoying to have to start all over again with a new doctor, who wants to repeat all the tests you've already had three ways till Sunday. I need to realize that - while there might not be any answers to be have, when you've got such "mysterious" maladies as CFIDS - if you're not helping me, you're hurting me. There's a lot more that they could/should be doing, and if I have to keep searching, I'll keep searching.
So, you're on notice, current primary care "physician": If you're not more helpful the next time I call (and just a free hint for you: Saying "Well, have you tried Tylenol?" after I've already told you that I could take an entire bottle of the damn things and they might as well be M&Ms for all the good they do me is Not. Helping.), then I'm letting you go. For me.
*Mimi Guarneri, The Heart Speaks: A Cardiologist Reveals the Secret Language of Healing
--------------------------------------------------------------------------------------
Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself
I wish I didn't know so many doctors. Nothing personal, but I could really do with knowing less of them, (or none at all?) and, today, one in particular. One who is doing a whole lot of nuthin, and contributing such gems as "stress can cause hives, you know" or "you're so young to be in a wheelchair" but nothing, that might be considered even slightly, you know, helpful. Not a substantive suggestion in the bunch, just a lot of babbling about "if it gets worse, maybe you should come in and see me..." Even as she was implying that coming in to see her would net me absolutely nothing in the way of a result.
And after sixteen years, I think I definitely need to be quicker to let go of doctors who - while not perhaps actively doing me harm - are also not helping me. Regardless of the fact that it is ridiculous and annoying to have to start all over again with a new doctor, who wants to repeat all the tests you've already had three ways till Sunday. I need to realize that - while there might not be any answers to be have, when you've got such "mysterious" maladies as CFIDS - if you're not helping me, you're hurting me. There's a lot more that they could/should be doing, and if I have to keep searching, I'll keep searching.
So, you're on notice, current primary care "physician": If you're not more helpful the next time I call (and just a free hint for you: Saying "Well, have you tried Tylenol?" after I've already told you that I could take an entire bottle of the damn things and they might as well be M&Ms for all the good they do me is Not. Helping.), then I'm letting you go. For me.
*Mimi Guarneri, The Heart Speaks: A Cardiologist Reveals the Secret Language of Healing
--------------------------------------------------------------------------------------
Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself
Tuesday, November 09, 2010
"Are you lonesome tonight, Do you miss me tonight? Are you sorry we drifted apart?"
Day 09: So today's topic is about people who drifted out of your life, and I suppose I could mention any number of specific people. People I miss, people I'm not sure how I lost touch with, people who just... went away.
But instead, I want to be as honest as possible here, since that's the point of the whole damn thing, and say that I? Am not good at keeping in touch.
Oh, I pretend to be - or, more accurately, I hope to be: I'm one of those annoying people who has a presorted box full of cards to choose from whenever the need might arise. I have fancy stationary, and pens that I know are good for letter writing, and I sometimes spend entirely too much time looking for pretty, different, or interesting vintage postage stamps on E-bay (don't judge). I keep a meticulous address book, as well as a perpetual calendar with just about everybody's birthday noted in it.
But here's the thing: That address book? Is still packed (it's been over a year, and I can't find the damn thing). The calendar? I don't actually need it, because dates are things that stick in my head. But even with the dates there in my head, most of the time the card never gets taken out of the box and filled out. Where it does no good whatsoever. And I usually don't wind up buying the pretty stamps, because I have no money.
In my fantasy world, everybody I know/love gets a card on their birthday, and a letter when they're sad. They get "just thinking of you" and "cheer up, you can do it!" e-mails, and pop-in visits. They get phone calls that last for hours, and we go out to lunch a lot.
In reality, keeping in touch is a road to hell that is well paved for me. Good intentions abound, but I hardly ever follow through. In person visits are very few and very far between - mostly because of my circumstances (I'm sick; they have dogs; I don't drive; I am hacking up a lung) and the fact that we all have our own lives. Phone calls are ... tricky, because I don't technically like the phone. Which is to say I avoid it if at all possible.
I often say to myself "I should call/write/e-mail this person because it has been forever since we talked!" and then I go about ... not doing those things, and more time passes, and it builds up in my head ---- You haven't called; you are a horrible friend; you haven't seen her or met her baby and it is the baby's fourth birthday! At least send a card, you terrible person you! - until it gets to the point where I realize I MUST CALL NOW or I risk losing some important connection to a person I actually like, but just haven't been able to keep up with. At which point, I usually do not call because I still have a hearty dislike of the telephone, but instead I will send an quick e-mail to say "hi" so it doesn't seem like that big of a deal to me that I have been out of touch so long.
All this is to say, that if people drifted out of my life, and some of them did, I take at least partial responsibility.
And I miss you.
Just so's you know.
---------------------------------------------------------------------------------------
Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself
But instead, I want to be as honest as possible here, since that's the point of the whole damn thing, and say that I? Am not good at keeping in touch.
Oh, I pretend to be - or, more accurately, I hope to be: I'm one of those annoying people who has a presorted box full of cards to choose from whenever the need might arise. I have fancy stationary, and pens that I know are good for letter writing, and I sometimes spend entirely too much time looking for pretty, different, or interesting vintage postage stamps on E-bay (don't judge). I keep a meticulous address book, as well as a perpetual calendar with just about everybody's birthday noted in it.
But here's the thing: That address book? Is still packed (it's been over a year, and I can't find the damn thing). The calendar? I don't actually need it, because dates are things that stick in my head. But even with the dates there in my head, most of the time the card never gets taken out of the box and filled out. Where it does no good whatsoever. And I usually don't wind up buying the pretty stamps, because I have no money.
In my fantasy world, everybody I know/love gets a card on their birthday, and a letter when they're sad. They get "just thinking of you" and "cheer up, you can do it!" e-mails, and pop-in visits. They get phone calls that last for hours, and we go out to lunch a lot.
In reality, keeping in touch is a road to hell that is well paved for me. Good intentions abound, but I hardly ever follow through. In person visits are very few and very far between - mostly because of my circumstances (I'm sick; they have dogs; I don't drive; I am hacking up a lung) and the fact that we all have our own lives. Phone calls are ... tricky, because I don't technically like the phone. Which is to say I avoid it if at all possible.
I often say to myself "I should call/write/e-mail this person because it has been forever since we talked!" and then I go about ... not doing those things, and more time passes, and it builds up in my head ---- You haven't called; you are a horrible friend; you haven't seen her or met her baby and it is the baby's fourth birthday! At least send a card, you terrible person you! - until it gets to the point where I realize I MUST CALL NOW or I risk losing some important connection to a person I actually like, but just haven't been able to keep up with. At which point, I usually do not call because I still have a hearty dislike of the telephone, but instead I will send an quick e-mail to say "hi" so it doesn't seem like that big of a deal to me that I have been out of touch so long.
All this is to say, that if people drifted out of my life, and some of them did, I take at least partial responsibility.
And I miss you.
Just so's you know.
---------------------------------------------------------------------------------------
Day 01 Something you hate about yourself.
Day 02 Something you love about yourself.
Day 03 Something you have to forgive yourself for.
Day 04 Something you have to forgive someone for.
Day 05 Something you hope to do in your life.
Day 06 Something you hope you never have to do.
Day 07 Someone who has made your life worth living for.
Day 08 Someone who made your life hell, or treated you like shit.
Day 09 Someone you didn’t want to let go, but just drifted.
Day 10 Someone you need to let go, or wish you didn’t know.
Day 11 Something people seem to compliment you the most on.
Day 12 Something you never get compliments on.
Day 13 A band or artist that has gotten you through some tough ass days. (write a letter.)
Day 14 A hero that has let you down. (letter)
Day 15 Something or someone you couldn’t live without, because you’ve tried living without it.
Day 16 Someone or something you definitely could live without.
Day 17 A book you’ve read that changed your views on something.
Day 18 Your views on gay marriage.
Day 19 What do you think of religion? Or what do you think of politics?
Day 20 Your views on drugs and alcohol.
Day 21 (scenario) Your best friend is in a car accident and you two got into a fight an hour before. What do you do?
Day 22 Something you wish you hadn’t done in your life.
Day 23 Something you wish you had done in your life.
Day 24 Make a playlist to someone, and explain why you chose all the songs. (Just post the titles and artists and letter)
Day 25 The reason you believe you’re still alive today.
Day 26 Have you ever thought about giving up on life? If so, when and why?
Day 27 What’s the best thing going for you right now?
Day 28 What if you were pregnant or got someone pregnant, what would you do?
Day 29 Something you hope to change about yourself. And why.
Day 30 A letter to yourself, tell yourself EVERYTHING you love about yourself
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.
Wednesday, May 12, 2010
Where I've been
Nowhere exciting, unfortunately.
Just feeling a little bit more rundown than usual: Allergies and a spring cold - along with a birthday party, a baby shower, a double christening and a wedding shower - have left me feeling the full weight of the Fatigue part of Chronic Fatigue Syndrome. I'm still waiting to hear if my surgery is on or off - if it's on, it's scheduled for Next Friday, which - how the damn hell did the end of May get here so fast? I'm loving my new computer, which is quick and not-complaining and purple-ish and a little heavy but I am getting used to it. I am mostly doing mindless things, and have so many unread feeds in my Google Reader that I almost don't want to turn it on (and some days, I just don't). There is very little exciting news here - SisterCh moved in with her fiance, leaving me as the only child still at home, and that is not the most awesome feeling, let me tell you. I am weeks behind on phone calls, because every time I look at the phone I get a feeling of just "ugh" and then I roll over and read a book because I don't have to think of what to say next. I am very sorry if you are reading this and are one of those people I haven't called... I'm getting there, I promise. Poor BestFriend/College Roommate and I haven't seen each other since November, I think, and I keep seeing her - and her kids - Christmas presents in the corner and cringing, because it's mostly my fault that we haven't met up, and yet I just don't have enough umph to say "Come on over!"
And this post is very whiny, which I do not enjoy, so instead of keeping on in that vein, I'm going to say that Lil Girl told me the other day that I am "Beauteous", and I wanted to give her a pony. And that my cousin's twins (now 2 and almost a half years old) finally came over for the first time a few weeks ago, and it was amazing to see them running around (one with his feeding tube and all, the other avoiding the tube expertly), laughing, and seeing their mom laugh did me some good as well. And, finally, No Longer Youngest Nephew pitched in his first Little League game this week, and retired his side with no hits!
I'll be back soon, I hope: Just gotta think of something to say.
Just feeling a little bit more rundown than usual: Allergies and a spring cold - along with a birthday party, a baby shower, a double christening and a wedding shower - have left me feeling the full weight of the Fatigue part of Chronic Fatigue Syndrome. I'm still waiting to hear if my surgery is on or off - if it's on, it's scheduled for Next Friday, which - how the damn hell did the end of May get here so fast? I'm loving my new computer, which is quick and not-complaining and purple-ish and a little heavy but I am getting used to it. I am mostly doing mindless things, and have so many unread feeds in my Google Reader that I almost don't want to turn it on (and some days, I just don't). There is very little exciting news here - SisterCh moved in with her fiance, leaving me as the only child still at home, and that is not the most awesome feeling, let me tell you. I am weeks behind on phone calls, because every time I look at the phone I get a feeling of just "ugh" and then I roll over and read a book because I don't have to think of what to say next. I am very sorry if you are reading this and are one of those people I haven't called... I'm getting there, I promise. Poor BestFriend/College Roommate and I haven't seen each other since November, I think, and I keep seeing her - and her kids - Christmas presents in the corner and cringing, because it's mostly my fault that we haven't met up, and yet I just don't have enough umph to say "Come on over!"
And this post is very whiny, which I do not enjoy, so instead of keeping on in that vein, I'm going to say that Lil Girl told me the other day that I am "Beauteous", and I wanted to give her a pony. And that my cousin's twins (now 2 and almost a half years old) finally came over for the first time a few weeks ago, and it was amazing to see them running around (one with his feeding tube and all, the other avoiding the tube expertly), laughing, and seeing their mom laugh did me some good as well. And, finally, No Longer Youngest Nephew pitched in his first Little League game this week, and retired his side with no hits!
I'll be back soon, I hope: Just gotta think of something to say.
Subscribe to:
Posts (Atom)