Wednesday, June 10, 2015
"14 doses..." I say to myself; one dose equals one cap full, so 7 cap fulls equals half the bottle. An amateur chemist, I ever so carefully measure out seven caps of the white powder, pouring each into the funnel where it hisses into the bottle like fine sand.
I repeat the process with the second bottle; no measuring required now. I tap the funnel to clear it, then crack open the 32 ounce bottle of blue Powerade; it's still cool from the store, but that won't matter. I measure sixteen ounces into the white plastic measuring cup next to me, then carefully pour that into the funnel. I tap the funnel to clear it, place it in the second bottle, and pour in the rest; the blue sinks into the white powder as I quickly screw the lids on both before taking one in each hand. I shake them vigorously, ignoring the twinge of protest in my already sensitive stomach. I peer into the bottle at the results and frown- it's mixed, but the powder hasn't dissolved fully. I shake the bottles again as I think about my options: I can suck it up and drink the 32 ounces of thick, gritty liquid, or I can add another cup of Powerade overall, which, while it may slightly decrease the level of unpleasantness, will draw out the process longer.
Still, I grimace at the prospect of adding 'gritty' to the traits of this already disgusting mixture. There's really no contest. I add half a cup to each bottle, shaking them again, and look inside.
"That's...better." I mutter, pursing my lips. It'll have to do.
I place the bottles in the refrigerator and blow out a sigh, hoping they'll have enough time to chill before I have to start my prep.
Technically, though, this is the second prep I'll be doing in as many days. Yesterday, I sat down with a giant jug of something called GoLYTELY with instructions to drink 8 ounces every 5-10 minutes over four hours, until the jug was empty. I set a timer for 2 minutes on my phone and rented the first three Jurassic Park movies, hoping that rampaging dinosaurs chasing terrified paleontologists would distract me from what I was drinking. For the first four or five glasses, it almost worked. By then, it'd been about an hour; my stomach was starting to feel full. By the eighth glass I was having a significant amount of trouble; it wasn't just the taste- though that, itself, was unpleasant- it was the texture, thick and smooth, coating my mouth and tongue every time I drank it. I pushed back the timer to 2 1/2 minutes between each gulp. Each time, when I was done I had to press my hand to my mouth, my eyes squeezing shut as I breathed deep through my nose and concentrated on not being sick. I ended up having to take breaks between 'doses', trying to get as much as I could at a time into my system.
But there was another problem. According to the prep instructions, I would have my first movement an hour after my first 'dose' of the GoLYTELY. Two hours went by, and nothing had happened.
I carried on as best I could. By 8:30, I'd finished half of the solution, and still hadn't made any progress. Feeling sick to my stomach, I resigned myself to contacting the on call GI at my doctor's. I made the call, feeling embarrassed as I explained to two different people why I needed to reach the GI, and it couldn't wait until morning. I gave my call back number, was told that the doctor would be paged and I'd hear back in around a half an hour. In the meantime, I tried to drink more of the mixture, getting up and walking around.
Finally, I heard from the on call GI.
"So you haven't had a single bowel movement?" he asked
"No, not anything." I said, feeling myself blush and rolling my eyes at myself.
He confirmed what I'd feared - that they wouldn't be able to go through with the procedure.
"You're absolutely right in that we will not be able to get clear information at this point." he said.
I silently groaned and dropped my forehead to the cool surface of my desk. Of course not. This was the third time I'd been unable to have the procedure because my prep had failed to work. Lovely, I thought, already dreading having to call and reschedule, listening to the appointments nurse sigh as she went through her system. Then, starting the prep all over again..
"Do you think you would be willing to continue with the prep tomorrow?" the GI's voice cut through my reverie. I lifted my head.
"Um...yes, I think I could do that." I said.
"Because if you could stay on the clear liquid diet, tomorrow you can start the prep again and then have the procedure on Thursday." he said.
"Yes, I can absolutely do that." I assured him.
And that leads to this afternoon, right now, as I prepare the- thankfully different- prep, trying not to think of the evening ahead of me, and hoping that the Powerade, at least, won't be as bad.
Monday, January 19, 2015
For awhile now, I've been trying to plan my food for the week ahead of time, and do shopping and cooking and all that jazz.
I have, for the most part, been unsuccessful. Today, on that theme, I found myself writing a post about the difficulties of changing the way you approach food when you frankly have no idea what the hell you're talking about. It occurred to me that this post - surprise- is health related! So, I figure this is a great time to exercise my right to cross post.
The post can be found here.
You want a quote? Well, I thought you'd never ask!
"I, like many people in the world, eat too much junk. I eat out too much, and my food choices need a serious overhaul- I know this. I am aware of it every damn time my stomach gets mad at me after a bad choice, or when my mental energy is shot, or I'm hungry even though I JUST had a really heavy (and probably fattening) 'meal' not an hour and a half ago.
The thing is, I desperately want to change that, in the moments of clarity in the storm of chaos that encompasses life management when you have chronic health issues and a generally 'work in progress' life, I dream of healthier food choices and how they'd change things."
Saturday, January 10, 2015
Let's talk about laziness.
More to the point, let's talk about why people without chronic illness need to keep that word to themselves.
It's an annoying fact that, when you deal with chronic illness, sometimes you just need to take time to do Nothing.
Well, not necessarily nothing, but there are definitely days when I, personally, need to just not move. Sometimes, I need to take some quiet time for myself. These times aren't just therapeutic luxury for me- they're essential. Whether I like it or not, whether I want to or not, I need these times. To heal. To recharge. To find my spoons or count how many I have left.
To be honest, I really hate being the type of person who needs that. To be totally honest, I still struggle with fully accepting it, often to my detriment. It's annoying and inconvenient and you know what? It makes me feel terrible. That last part, though, isn't just my inner healthy person screaming at me to get up and go, go, go. The embarrassment, frustration and feelings of inadequacy as a human being aren't conjured from nowhere.
They exist because, for as long as I can remember, someone in my life has informed me that my behavior is just laziness.
"You're unfocused." they've said,
"You need to realize that life isn't a game."
"You're being irresponsible."
"Get motivated! You can't just hide when things get rough. Be realistic."
"You need to work harder. You aren't putting in enough effort. You aren't getting anywhere. "
"Grow a thicker skin."
Someone in my immediate family put it the most eloquently, though, a few years ago:
"Why don't you actually get up off your fat, lazy, ass and DO something useful?!" she snarled, "You're pathetic, you're such a brat!"
So this is an open letter to anyone who's ever thought (or said) anything like the quotes I just listed:
First of all, you're idiots.
I don't say this with any particular malice- (okay, maybe a teensy bit with that last one; I'm a bit upset with you after all) because we've all been idiots once or twice over the course of our lives so far. But in this case, you need to not be idiots anymore, because every time you open your mouths to say any of that stuff, you're probably hurting someone.
I'll help! There's something you need to know.
Chances are great that we already fight with ourselves about this stuff- and we aren't gentle. So when you start saying all the things you say, you're just adding to the negative stuff we're already fighting with. You think we haven't heard what you're expressing before? We've said it to ourselves before, probably multiple times!
Here's some of what's gone through my mind, after being down and out for a few days this past week:
I shouldn't need this. Normal people can do so much and never stop. Why can't I be one of them? I'm pathetic. What if this is all I am? What if I can never get past this? How do I get past this? It hurts to move and I'm bleeding and the creams I have to put on my skin burn like fire and I can't stand around because I feel queasy just standing, I feel seasick and my abdomen is so sensitive to touch that even my jeans are too much pressure and make me feel like I have to run to the restroom and the steroids I have to take right now to deal with the pain and itch in my skin and the irritation around my eyes that's so bad I can barely open them in the morning is making my heart (which already beats too fast) race, and it all kept me up all night until I passed out exhausted at 6 a.m. to wake up at 9 to go to an appointment. And I should be able to work through that, I should, I know, but I can't, I can't and I'm so sorry. I'm a failure. I'm so sorry I'm this, I'm so sorry I'm me.
I know. I'm trying. But there's so much going on already.
"You need to realize that life isn't a game."
I know it's not a game. This isn't fun for me. I swear I'm not choosing to be this way.
"You're being irresponsible. Get it together."
It's as together as I can get it- I'm trying but I can't do any better than this right now.
"Get motivated! You can't just hide when things get rough. Be realistic."
I'm not hiding! Things were already rough- I used my motivation to get out of the house this morning.
"You need to work harder. You aren't putting in enough effort. You aren't getting anywhere."
...I know I'm not. I know I do. I'm sorry I'm not doing well. I can't make improvements right now- I'm too tired from doing maintenance.
"Grow a thicker skin."
"Why don't you actually get up off your fat, lazy, ass and DO something useful?!"
I...can't. I did.
I'm disgusting. I'm not useless!...
What if I am?
"You're pathetic, you're such a brat!"
No...I try..I do.. I...
But maybe it's not enough.
Maybe you're right.
I am pathetic.
Imagine our lives are a trek across the whole freaking world.
You come up alongside me and casually glance at me. I seem about the same age as you. Same height. We obviously started in the same general part of the world. I look okay, health-wise. I've got a medium sized pack on my back and I'm carrying something- it looks like a super lightweight jacket or cloak- slung over my arm. I've got comfy looking footwear, and seem well equipped, and well fed (I'm obviously getting a good amount of food from somewhere).
You are carrying a large pack. One of the straps is worn so it rubs your right shoulder. Your footwear isn't as nice- it doesn't keep out the rain and there's less arch support. You've been unlucky in trading or hunting for awhile, so you're somewhat underfed. You are really hungry.
But you're making steady progress and have been all day- all week, in fact. It's what you do. You keep moving forward. You keep a good, steady pace.
You see that my pace is slower than yours. Before too long, I stop and sit by a tree. As you pass me, I take out a tiny charcoal and paper and doodle for awhile. Then I get up and seemingly leisurely gather my things before setting off again. By this time, you've crossed another stretch of forest and climbed a hill to reach a small lake, meeting the objective you set for yourself, ahead of schedule, so you decide to watch my progress. It's going to rain, so while you watch me you are also gathering wood to make a shelter for the night.
By the time I get to you, you've started building. I'm out of breath, red in the face, and took two breaks that you saw on my way up.
Looking up at the darkening sky, I set about looking for sticks and branches. I haphazardly form them into an upside down V. They collapse on themselves several times. Seeing this mess unfold before you is too much. You take a moment from digging your protected fire pit to and offer me some precious rope. You don't bring it to me, though. I have to walk over to get it during which my haphazard pile of sticks collapses again.
It still takes forever- partially because I wandered off at one point to sit and scribble on the paper again. In the end, even with the rope, the shelter I build is a sad excuse for cover. It only fits me if I sit, Indian style, curled down slightly, with my pack in my lap, and it certainly won't keep Anything out.
By this time, you have a fire roaring. You are cooking a pheasant that looks like it's starved to death. It starts to rain. I take the thing that was draped over my arm and shake it out, draping it over my little shelter. This takes a few tries. It looks like an old poncho. It seems to do the trick, mostly. I reach into my pack and pull out a big apple. I also pull out a fish wrapped in paper. I offer it to you. You take it and get it cooking.
I eat my apple. Or, I eat three or four bites. They're small and take forever. After those bites, I offer the apple to you. You shake your head and give me a weird look, not moving- why would I offer a partially eaten apple to you?
I shrug, look down at the apple, then take another tiny bite before tossing it away towards the lake.
You look at me, shocked and annoyed beyond reason before heaving yourself up and going out and grabbing the apple off of the grass. You go back under your shelter, muttering to yourself. How could I be so wasteful?! Throwing out perfectly good food? Why don't I know how to do anything right? Why am I so slow? Why am I so lazy?? And who do I think I am, offering you things like you need my charity??
You don't know that I walk slower even though I carry a smaller bag because, not only is my bag heavier than it looks, but I messed up my back when I was little and one side is weaker than the other. I take frequent breaks because I was sick for a long time and have scarring on my lungs and my leg muscles are out of shape. My poncho is heavier than it looks and made of something I'm allergic to but it's all I've got to keep out the rain. I acquired the fish in exchange for one of three apples I was lucky enough to find, but I'm not great at making fire- or cooking meat- so after you gave me rope, I repaid you with the fish as a thank you.
And as for the apple, I couldn't eat much of it because it was too hard for my teeth. I offered it to you before I threw it away because apples are hard to come by, and it was a shame to let one go to waste. Also, I may have seen the way you looked at it when I first took it out.
Noone ever taught me how to make a shelter, and I'm fortunately not meeting the people I'm looking for for four more days somewhere that is only a few miles from where we are.
I don't know about your shoes, or that your pack is super heavy and you're dealing with it, but you dislocated your shoulder awhile back and it's still really uncomfortable to carry that weight. The dull pain soreness from the bad sprained ankle you got the same day you messed up your shoulder doesn't help matters. Still, you do it, because you have to, but by the time you set up camp you are hard pressed to move anything if you don't have to.
I don't know that you are normally a great hunter, but since you messed up your shoulder and qnkle you've been struggling to find food, since you aren't great at gathering. I don't know how offensive it is to you to be perceived as weak.
You've been this route before, and you've got to meet someone in three days time so you're on a schedule.
The difference between us is that I'm aware that I don't know your story, or what motivates you deep down. I don't know anything about you other than what I've seen, and I know what I've seen isn't nearly enough for me to formulate any opinion about the type of person you are or judge you.
You, though, seem very, very sure that you know everything there is to know about who I am.
Friday, January 9, 2015
This post is partially aimed at members of a community I've become somewhat active in. Since they may happen by, looking for an explanation I promised:
HI! Click here for the background story. Sorry it's long.
My living space continues to be a mess- the vicious cycle continues, and I continue to be effected by it- both mentally and physically.
Quite frankly, asking for help in situations like mine is embarrassing. It's humiliating to reach out and say:
"Look, because I've been having huge health issues, I've let my living space get so out of control that I can no longer handle cleaning it myself because the dust alone would be enough to cause an allergic reaction that would leave me down for the count."
But, I did it. I sucked it up and put up an ad, asking for someone to clean and sort things in a VERY messy room. I got answers, and one of them even sounded like a nice human being! Excited and nervous, I responded to her, and long story short, she's coming in 3 days!
Except that now, due to unforeseen expenses (which may or may not include a whopping $100 rent increase), I find myself in a bind. This is essential for so many reasons and NEEDS to be done, but I'm not sure how to come up with the fee without borrowing money from someone.
I really, REALLY don't want to borrow the money from someone.
Monday, August 18, 2014
Thursday, August 14, 2014
Monday, July 14, 2014
To that one person who happens to follow this unformed mess of a blog with some consistancy (because hey, it's a big world out there, right? A girl can dream)- if you do exist, I apologize for not posting lately. I know I promised myself (and perhaps the world, in a previous post) that I'd start being more active, but life gets in the way sometimes. These past few weeks have been tough all around. I had a very disappointing encounter with a prospective new dermatologist (more on that later). I also find myself being absconded with on pretty much a daily basis, and being kept busy all day, every day thanks to a certain someone appearing for an elongated visit in town; it's not that her appearance is unwelcome, I'm just not used to the level of activity she tries to achieve every day.
Most notably though, was a very unpleasant encounter I had with a member of my household.
He has a dog, a very sweet female, who he loves, and who loves him. While I don't doubt that he does everything he can for her, she is his first dog, and owning an animal is a learning experience- there's a lot that you don't know when you first start out- and that's fine, as long as you are open to learning more, whether from vets, or books, or more often, people who have some more experience than you.
This guy, unfortunately, is Not open to any input about his dog. He sees it as some sort of affront- I guess maybe he thinks of someone offering advice or tips about his dog as an insult, like through the action that person is implying that he's clueless or stupid (For the record, the only way I'd view anyone as stupid in this situation was if they, for whatever reason[like some odd form of pride], chose to remain ignorant to the possible detriment of their pet- but perhaps I've said too much ;) ).
Anyway, to make a long story as short as I reasonably can- cut me some slack, I am a writer, after all- one day, this person took his dog for a run, which he's done before. This time, though, it was Really hot outside- at least 80 degrees and very sunny. When he arrived back from the run, his dog was exhibiting a lot of signs of heat stroke. Concerned, I asked if she was alright. Instead of answering me, he mumbled something about how she was his dog before taking her up to his room. I was still really worried, so I phoned a local emergency vet, left out names and described her symptoms, asking if there was anything that could be done from home. I figured I'd get concrete information and approach him reasonably and ask how she was, and suggest something to help her.
Of course, he found out about my phone call. What followed was a nasty confrontation- he was yelling at me, talking over me, ranting that I had no right, that his dog was not my problem. I felt he was trying to intimidate me at a few points, he was belittling, condescending and hostile. Eventually, I started raising my voice, not with the intention of exacerbating the situation. It was more that I refused to be railroaded and not get a chance to defend myself in this so called 'conversation', especially when the encounter itself was incredibly unreasonable, and I would not be painted as the bad guy, or the problem, when all I did was express concern for his dog, who I live with, and so, in a way, she is my problem, too.
By the end of it, I was a wreck; I was shaking and so pissed off that I could barely form a sentence. This overwhelming frustration boiled inside of me, this feeling of having my hands tied, of being absolutely powerless to make the situation better without cowtowing and compromising myself. I was still upset when I went to bed.
And when I woke up the next morning, my entire face, neck, and parts of my body were covered in eczema flare.
What a lot of people don't know is that, much like stress can cause breakouts in people who have acne, an eczema flare can be triggered by stress or intense emotional responses.
So that morning, when I got up, the reaction I had to what had happened the night before was written all over my face- there for all the world to see.
Imagine, for a second, if you don't suffer from any skin conditions, what it's like when your body flashes a neon sign if you experience stress, and it's one that everyone can see, but very few understand the meaning of. Imagine your body compounding the stress or hardship you're already experiencing by reacting to it in a way that only makes things harder- adding pain, discomfort, self consciousness and all the other results of a breakout or flare into the already taxing mix.
Now, imagine what I just described, happening every single time.
It's been over a week, but my flare, instead of going down, just got worse. Finally, another trip to urgent care. Another round of oral steroids. Another steroid injection.
All because of one stupid argument with one very difficult man.