\Ev`a*ga"tion\, n. A wandering about; excursion; a roving.
Thursday, March 23, 2006
What makes news "good," exactly?
My news isn't really good, or bad, it's simply news.
Although to jump back a few days--it's been wacky in my life. After dealing with all of the doctors on Monday, I called Devin to let him know that I may, or may not, need to go the E.R. In the four years we've been together, it has never been easy for me to tell Devin when I'm sick, and how bad it
really is. I don't know why I can easily write about it on the internet, then turn around and have a hard time sharing my problems with my husband.
But I'm trying to be better. So, I called Devin and let him know what was going on, which lead to me telling my father-in-law everything because he could tell I was sick (being passed out on the couch was probably an indicator) and he is my boss, after all. Devin's Mom also happens to be a nurse in our local hospital, and when she came home on her lunch break, I told her what was going on and she promised to ask some of her E.R. friends about it, saving me the trip (and the money).
Then I had to tell my parents because I needed them to drive me to Fresno.
Good lord, that was a lot of people to enlighten about my problems. Everyone was great but it felt strange to have so many people hovering over me when I'm only mildly sick. (Since recovering from eye surgery, that is now my new measure for sickness. If I ever feel that awful again, then I'm pretty damn sick. If I'm nowhere close to feeling that bad, then it must not be a big deal.) Besides the blood, I only felt achy and tired, which could have been attributed to PMS and not Crohn's. But everyone seemed to think it was a Big Fucking Deal, so I got to stay home for a day and watch a whole lot of
"Gilmore Girls."
My first doc visit--with my Gastroenterologist (GI)--went as expected. The first thing he said was, "Well, you need a colonoscopy, eh?"
"Yup," I replied. "It's been about two years."
"Well, let's get that scheduled and then we'll decide on if you need steroids or not."
Yes! I screamed inside my head. He's not going to simply pump me full of steroids that I might not need. I
really like this new guy. Apparently, since he's also got some sort of M.D. in pharmacology, he realizes that steroids are evil, evil drugs and should be used
sparingly, especially in an adult woman who's already got a litany of problems due to excessive use of steroids during her formative years.
(The arthritis? Combination of Crohn's side-effects and the fact that steroids deplete calcium in the bones and fuck with your joints. I'm also an estimated two or three inches
shorter than I would have been had steroids not stunted my growth. They also apparently mucked with some of my other internal organs--steroids can mess with almost everything in the human body. But I'm not entirely sure what all of that
means at this point in time. All I know is that taking steroids now could mess with my reproductive system--I didn't get my period until I was seventeen because of steroids--and since I do want to have kids within the next five, or so, years, I really don't want to be rendered infertile quite yet.)
I guess this was good news. A doc who doesn't want to put me on steroids for no good reason is a really, really wonderful doctor. I don't even mind going in for the colonoscopy (which is in May) because I knew that was coming and I've already had a bunch, so they don't faze me anymore.
Also! I saw my Retinologist and he told me that I'm almost fully healed! I suppose that would be
great news. He's given me the go-ahead to call my Optometrist and get fitted for a new lens for my newly-improved left eye. (The surgery completely changed my prescription, obviously. Which is sad, in a way, because I'm more blind now than before--but I can see, so I really have no complaints.)
Which means I'm only a few weeks away from losing da eye patch! Woo! Woowoowoowoo... and I could just go on forever. I can also do yoga again! (Which means I can bend at the waist for extended periods of time.) And in three months, I'll be able to ride a roller coaster again. (Apparently that is not a question the eye doc usually gets asked because his patients are all sixty or older, so he had to consult with some of his colleagues but general consensus was that a roller coaster shouldn't knock the rubber band from around my eye, or re-detach my retina but I still need to wait a good three months, which is fine.)
He also told me that, in six or nine months, I would be a good candidate for Lasik. Which surprised the hell out of me. I didn't think they could do Lasik on a detached retina patient but I guess they can. It would be beyond weird to have Lasik--I've been wearing glasses since I was in the second grade. And I'm legally blind without them, so I can't see a damn thing first thing in the morning.
I can also, apparently, go back to wearing contacts as soon as I feel comfortable. Which was another surprise because I thought I'd have to wait a good two or three more months before wearing contacts again. But eye doc said no, I could go back to wearing them now if I wanted to but I'm probably going to wait, anyway. Because my eye still hurts (which is normal, I'm told, this was a Big Deal surgery and it's going to be a while before my eye stops hurting entirely) and putting little bits of rubber in it seems counter-intuitive to me.
But. Wow. I'm going to have my life back. I'm going to be able to drive again! Devin and I are even looking into getting me a cheap, but decent little Kia or Saturn so I don't have to drive the '92 Merc. Cougar anymore. Because that thing needs to be put down. Although I'll probably end up donating it to the local Polly Klaas Foundation chapter (you know, that girl who got kidnapped and murdered from Petaluma, CA or somewhere like that). They'll take anything, and the Cougar is actually in pretty good shape, it's simply not street legal. Which is fine, they've told me, because they'll pay all of the DMV fees (the tags on it are from 2004).
So, I guess this is all good news. I'll soon be able to get back to my regularly-scheduled life.
Posted by Katie.
at 8:24 AM |
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Monday, March 20, 2006
If it's not one thing, it's another.
Since this might be the week I get the go-ahead to remove the eye patch, my Crohn's just had to make a surprise appearance.
It started on Friday, towards the end of my work day and I tried to call my doctor buy he'd left for the weekend. And "it" was yucky, Crohn's stuff. Such as blood coming out in places where there should be no blood. I spotted blood all during the weekend but didn't think much of it because there wasn't a whole lot of blood. Just enough to make me think that I should call my Doc on Monday.
This morning it went from a minor problem to a big, fat, huge problem. Lots of blood. Lots of bright red, fresh blood which means that I'm bleeding internally somewhere from something that is, most likely, not good. After spending fifteen minutes on the phone, on hold, while an assistant tracked down my Doc, they came back with the plan.
I either come in today or go the E.R. right now.
Well. This is my new "adult" doctor, so I can forgive him for thinking that I enjoy running to the E.R. if I'm not out-right dying. He just doesn't know me that well but he will soon learn that I need to be doing more than hemorrhaging blood to make that awful trek to the E.R. Basically, I need to be comatose because, otherwise, you could not get me into the E.R. for any reason.
I'm also at work, and live a good forty-five minutes away from my Doc (he's in Fresno, and I'm not) and, oh yeah, I can't drive ('cause of da patch). So, coming in today was not an option. This is where the assistant started to get a little frustrated with me. She was alarmed by how calm I was about the situation. Not realizing that I've been doing this for so long that, even though I realize it's not a good situation, I simply can't bring myself to freak out enough to warrant a trip to the E.R.
I talked her into letting me come in Wednesday morning because I already have an appointment with my Retinal guy on Wednesday afternoon. Who happens to be around the corner from my Gastroenterologist. But if I start passing out, throwing up, running a fever, or basically anything else that's not just bleeding internally, then I have to go the E.R.
Which means that I'll tough it out until Wednesday (even though I'm a little faint and dizzy right now... but that's okay because I can go lie down). I'm sure my Doc is going to rush me into endoscopy as soon as possible (both upper and lower), which doesn't really bother me. Probably because I'm too wiped out to be bothered, right now. All I want is a nice, long nap. Which doesn't count as passing out, right? Because I'm taking a nap.
(Just as long as Devin doesn't drag my tired ass to the E.R. all will be well. I've definitely been-here, done-this before, so we'll just wait and see what happens.)
Posted by Katie.
at 9:50 AM |
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Tuesday, March 14, 2006
Kid's Day
(Edited to add: Comments now work for anyone/everyone! Thanks to 'Zanny for letting me know that they were kind of messed up.)
Every year, in March, a local newspaper sells copies of it's paper for a dollar and donates all of the money to our local children's hospital.
I began going to that hospital in 1988, when it was still spread out into a dozen random buildings through-out Fresno. My gastroenterologist (that would be the main doc for my disease) was in one building, testing was done in another, surgery in the main facility (except for some out-patient stuff, which was in yet another building) and so on. A trip to the doctor could take the entire day if she sent me to various labs for tests.
The entire, sprawling hospital was, simply, too damn small. I remember being nine, coming out of surgery and puking my guts onto the floor but still having to be hustled out of the hospital because they needed my bed for other post-ops. As the years went by, my family and I would joke that it felt like it I was on an assembly-line with a bunch of other sick kids. The hospital had a definite move-em-in-move-em-out mentality and, of course, the quality of care suffered.
In spite of that, the hospital managed to save my life and the lives of so many other kids that I met while I was there.
The move to the new facility began in 1998 and it is, quite simply, the most incredible hospital that I have ever been to in my life. In fact, they had to kick me out once I turned 22 because, left to my own devices, I would still be going to Children's Hospital.
Which makes me wonder about all of the other kids (now adults), like me. Who grew up in that hospital, moved with it to it's gorgeous new facility, and were shunted out once they reached their twenties. Of course, I understand why we all have been kicked out--I would rather the doctors deal with sick kids than with me but it has still been a terribly difficult transition. I've managed to put off a much-needed colonoscopy (after having this disease for almost two decades, my risk for colon cancer has quadrupled, or something equally heinous and I'm now required to go in for annual endoscopies) because I'm frightened of what the procedure will be like in another facility.
And that's silly but that's my reality. It's impossible to explain how nurturing everyone is at Children's Hospital. Everywhere that I went, from my own doctors, to the labs, to surgery, there was always someone on hand who wanted nothing more than to make the experience a little bit easier for me.
It's disheartening that we have to give up that kind of care as we get older. The few times I've gone to adult hospitals for tests, I've been shocked at how little everyone there seems to care about my peace of mind. If I express fear, they brush it off with a "Well, you've done this sort of thing before, so you should be used to it," apparently not realizing that my fear comes from having done such things before. If I'm uncomfortable, or even in pain, that is also brushed off with a "It'll pass in a moment, just be quiet." I've even had nurses call me names--tell me that I was being a baby, and should act my age.
Such treatment should be, in my mind, inexcusable. When I told my doctors at the Children's Hospital about these experiences, they were the ones who decided to keep me at that facility until the insurance said otherwise. My doctors understood that when you have a chronic illness, and you are going to be spending a majority of the rest of your life in hospitals and doctor offices, that emotional mis-treatment is terrifying. Because I can't console myself by saying "Well, at least I'll never have to see these people again after this is over," because it is never going to be over.
But I'm grateful for all of the wonderful memories that I have from the Children's Hospital. I don't want to imagine how much more harrowing my experience would have been if I had not been surrounded by kindness everywhere that I went.
And I've tried to make my doctors understand, especially when I was finally forced to leave most of them for "adult" doctors (although we, of course, remain in touch and they are always on-hand to offer advice), that it was their kindness that helped save my life just as much as their medical treatment. Without their optimism, I doubt I would be here today with completely in-tact innards and a relatively clean bill of health (for me).
They never, ever gave up on me. Even when I was sobbing in the middle of their office, even when I was screaming obscenities at their nurses because I just wanted out, even when I didn't show up for appointments for a couple of years because I was tired of being sick. Even then. They never gave up. And that gave me the courage to never give up on myself.
Posted by Katie.
at 8:15 AM |
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Saturday, March 04, 2006
Doesn't look too bad.
It's really, really sad how long it took me to tweak this journal template. But I think it's coming along decently (thank god I remember how to work CSS, otherwise I would have been completely lost--and even then, I still had to look stuff up in my handy-dandy Web Design in a Nutshell book from O'Reilly).
Here it is, though. My new journal. Yes, it's from blogger but at least it's being hosted on my own domain. And, yes, it looks a whole lot like the LJ set-up (comments? since when do real journals have comments?) but I'm just testing the format, right now. In fact, feel free to post a comment and tell me what you think (I'm still not sure on some of the color schemes--and I haven't tweaked the settings for the comments page, yet, so that might look very strange).
I'm thrilled, though. I finally have a real journal, again. Yay me.
(I also edited it to add this lighter-colored content box. CSS came back to me in a big way, which makes me happy. I'm probably going to tweak it a hell of a lot more to make it look a little less like a cookie-cutter template.)
Posted by Katie.
at 4:52 PM |
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1 Comments:
how is everything? update, beeotch!
12:51 PM |