Monday, August 25, 2008

the girl with kaleidoscope eyes

I've been having a bit of an internal debate about whether I should publish this post. Because, although I've splattered the internets with swathes (can one really splatter a swath?) of those odd things that other people call feelings and plumbed my emotional depths, such as they are, I am, if you haven't noticed already, really kind of a private, reclusive person.

But recently several people, both on and off-line, have been asking me if there's something wrong or if they'd done something to offend me. And, though it's not generally the way I roll, I thought I might as well give the open and honest approach a whirl.

A couple of months ago, I was diagnosed with ulcerative colitis. If you don't feel like clicking the link and reading the gory details, colitis is thought to be an autoimmune disorder, where your body starts attacking itself, leading to all sorts of unpleasant complications. It's not life-threatening, but it's not much fun and, while there are many potentially helpful treatments, there's no cure.

It took a while and a bunch of invasive and embarrassing procedures to get the diagnosis right because I have what my doctor calls an "atypical presentation." That is, most people develop the disease in their teens or 20s, I have no family history of either colitis or the somewhat similar Crohn's disease, and I don't have the most common symptoms, which involve frequent bathroom visits.

What I do have is nausea, a continual low-grade fever, and a pervasive bone-crushing exhaustion. Stress, which I've had my fair share of lately, can make the symptoms worse. I'm taking medication, and, in any event, colitis tends to flare up, then go into remission for weeks or months, so there's every reason to think I'll be able to get it under better control.

Which is a long way of saying that it's not you, it's me. If I'm not commenting on your blog or returning your calls and emails quite as often as I used to, it's not because I don't care about you. It's because I've been having kind of a tough time.

And the title of this post? I'll spare you the long and boring back-story about why I detest the Beatles and everything associated with them. But someone I once knew forced me to listen to Lucy in the Sky with Diamonds way more than I wanted to and, mondegreen-fashion, I always heard the lyric in this post's title as: the girl with colitis goes by.

And, not surprisingly, these days, when I picture myself in a boat on a river, with tangerine trees and marmalade skies, those are the words that replay in an endless loop somewhere in the corners of my mind.

66 comments:

frumiousb said...

Haven't been around much here lately, but wanted to extend sympathies. I have Crohn's myself. Less than fun. I also present atypically-- low grade fever and arthritis appear long before the ulcers make an appearance.

If you're like me, now that you know that you have it you should be able to identify your triggers and avoid them once you feel an attack coming on. I've avoided a full blown episode without medication for years now. Sleep seems to be the key for me. If I short myself I get sick.

Good luck with it.

yummysushipajamas said...

Wow, what crap luck. It sounds like a pretty uncomfortable condition... I hope you're able to get things under control with it sometime soon and start feeling much better!

Until then, or even after that, I totally understand taking a break fro the internet for a while. Feel better.

slouching mom said...

oh, babe. now i feel awful for dragging you around the city.

i was diagnosed with UC in my twenties. very, very mild UC, luckily. my 2nd flareup was this past winter, meaning i went almost twenty years without an episode.

i hope for the same kind of course for you.

ALM said...

ooh - I'm so sorry you're going through this! Hope it goes into remission soon & for a long time....

Mad said...

You are a private person and so I will simply say that your wordplay is impeccable even if your luck is rotten. And, now, that's one more song that I will never hear in the same way again. Is the "'Scuse me while I kiss this guy" site still operating b/c this one merits submission?

Mad said...

Yup: http://www.kissthisguy.com/

Amelie said...

(o)

Mad said...

In fact, it would appear that you are not alone in misinterpreting that lyric.

calliope said...

my GM had this for years before someone could diagnosis it. It was horrible. I just hate that you have been suffering this way (or any way).
Wish there was something I could do to help...
xo

wheelsonthebus said...

I am so sorry. Colitis is awful. It can affect so much of your life.

Aurelia said...

I-yi-yi I am glad that you decided to tell us what's up, only because I was still worried.

It's crappy to have any disease, but at least thank God you have a disgnosis and some treatment. Let us know once in awhile how it's going, okay?

the dragonfly said...

Thinking of you...

And I'm going to laugh every time I hear that song now. :)

painted maypole said...

i'm so sorry to hear that, and hope that your symptoms spend more time in remission than not

And is there some sort of marathon to raise money to find a cure for Colitis? Because I think we have the basis for a theme song: "the girl with colitis goes by..."

G said...

Ugh UC is no fun. My husband has it and stress is his leading cause of flare ups (well and it seems, mozarella cheese).

I hope the meds get you back to feeling normal soon.

Now I am going to have to sing this song to him :)

justdawn said...

heh...and I thought I was the only one who thought they were saying "the girls with colitis goes by".

I hope that you are feeling better soon. It looks like good things are on your horizon:)

Kami said...

I'm sorry. I hope you can get it under control.

I haven't been around much either. Friends can do that, right?

Take care of yourself.

Tash said...

Wow. So sorry Niobe, that's terrible. Here I've been absent due to lighting fixtures and powder room tile. I feel like a real . . . . I was going to say "asshole," but that's not horribly appropriate now, is it.

Sigh.

I'm also sorry about the Beatles. They're my bread and butter around which every other band must present itself.

Which Box said...

I have a good friend with UC - it's taken a few years, sorry to say, but she's got it under control. Sorry to hear that's been slowing you down. But thanks for giving us another piece of the whole. Hang in there. Thinking of you.

sweetsalty kate said...

Mad nailed it with the wordplay and the rotten luck. But it's wonderful that there are others here who have been able to wrestle positive outcomes from the same diagnosis, or at least some ability to control it, and feel relatively unaffected. That's something.. that's hope. And don't worry about being silent for a while, we understand.
xo

Aunt Becky said...

I have Crohn's, so I understand entirely. I hope that you go into remission soon.

Caro said...

Sorry to hear that.

Oh and that song features in one of my earliest memories - my mum had the album.

Lori said...

Oh, man. Sorry to hear this. Sending you soothing thoughts.

Does this sometimes heal on its own?

k@lakly said...

For years my husband thought the Kenny Roger's song "Lucille' had the line, "...with 400 children and a crap in the field" in it. Not that that makes you feel any better but at least you are not alone in your musical interpretation skills.

Hope it remisses soon and you are back in acion lickedy split.

Andrea said...

Ugh. I am sorry.

Mrs. Spit said...

Aww bugger. Glad to hear that the prospects for recovery sound good.

Furrow said...

You may not like the Beatles, but I don't like the Olympics, and I think that's even harder to justify.

I'm sorry to hear about the UC. That sounds like a rotten thing to be stuck with, and I, too, hope you can get it under control and send it on its way. But I have to say, I was thinking you seemed in a pretty good online mood lately. But I've been a bit distracted, myself. Still, I think that makes me a bad friend, so I'm sorry about that.

Eva said...

Oh man, that SUCKS. So sorry!

christina(apronstrings) said...

oh honey, i hope you feel better soon. get some rest.
xoxo

Maggie said...

How horrible - and I can only guess how much more awful it has been as of late, given that there are plenty of things in your life to stress about.

Hang in there -- I hope that things get easier soon!

janis said...

This crap sucks.
I hope there is respite soon and you and your doc come up with a good plan.

Beruriah said...

Ouch, Niobe. I don't know personally the pain of UC but two of my closest friends have Crohn's. It is awful. I so hope you will be one of the lucky ones for whom the attacks are few and far between. I'm sorry.

Casey said...

That does not sound like fun. I'm sure all the testing had to have been stressful, too, since the symptoms are so vague and reminiscent of teh dreaded cancer.

I'm glad they figured it out. I hope you start feeling better soon.

Yolanda (the callipygian chronicle) said...

My husband has UC and has been told that his only option for a "normal" life is to have the last third of his colon removed, as the only thing that makes his symptoms remiss is a heavy dose of steroids. He has taken many medications, most of which made him feel worse or had side effects he found unbearable (like losing half of his hair in 6 weeks). For now, he is not willing to undergo surgery and says that living with the "urgent need to evacuate" and near-constant gas is bearable to him, especially since we have a Japanese toilet/bidet. All that to say that even if it's chronic, it may be tolerable. And that you're not alone.

(On a total opposite note, whenever I think of your unborn son, the name Silas comes to mind. It's the first name that hit me, when you put up the blue square.)

missing_one said...

Gosh. I have several friends who have UC and their symptoms seem totally different than yours (they have the yucky ones with make them each nothing but potatoes and starches and when they don't, end up in the bathroom, horrible).
I hope you have a mild case and that the meds help. I know exercise and stress reduction also helped my friends fight the thing.

thinking of you!

Bon said...

thanks, Niobe. you do kinda have kaleidoscope eyes, y'know?

when my friend was diagnosed with colitis this past spring, my fabulous, pithy reaction was summed up in one (intended to be sympathetic) word...shitty. then she looked at me funny and i turned beet red and we laughed.

my favourite mondegreen was when my college roommate and a whole bunch of us were sitting around listening to Boney M one holiday season...singing along to Feliz Navidad. gradually my roommate's voice became clear above all the others...she was singing "at least no one died, at least no one died...i wanna wish you a Merry Christmas...at least no one died." my very favourite.

Kathy McC said...

Just wanted to offer (((hugs))) and I understand the embarrassment and invasive diagnostic b.s. It sucks and I am sorry you're going through this.

The Nanny said...

While I was so sick over the summer they knew I had colitis but weren't sure at first what kind. Ulcerative colitis was a possibility, and I was terrified and afraid of it. Luckily, mine wasn't...but for a while I knew of your pain. It doesn't help, but I'll say it anyway--I'm sorry, really very sorry. It's good that it's manageable, but yeah, it sucks.

thrice said...

Who wants to be text book? At least that's what I ask myself when I try to add humor.

I also wonder what it is with my body that it attacks my heart, perip@rtum c@rdiomyopathy is considered autoimmune.

You might want to get your vitamin D levels checked. It appears that micronutrient difficiencies trigger a lot of undesirable things. The bad news is that once you have one autoimmune disease you are fertile ground for another.

I'm sorry that you have to deal with this.

Rachel said...

I am sorry you are going through this. I hope you are able to find a treatment that helps with the pain.

My Reality said...

Now that you know what it is, I hope it becomes easy to manage.

You can hate the Beatles. I hate Frank Sinatra. Both classics, both are supposed to be loved. I don't. So that means you don't have to either. :)

Angel Mom said...

((Hugs)) I'm sorry.

Lisa b said...

Niobe I am sorry to hear about your diagnosis and am hoping the atypical presentation means it is likely to be under control.

susan said...

I'll never listen to that song again the same way, I tell you.

More good wishes for the UC to get under control.

Magpie said...

Marmalade reminds me of the Eliot poem.

Sorry to hear about the state of your gut - I hope it settles down.

Libby said...

Aw babe, I'm sorry.

Antigone said...

With what you've been through I'm surprised it isn't much much worse.

niobe said...

Bon: what a nice thing to say about my eyes. I don't think anyone's ever called them kaleidoscope eyes before, but when I lived in France, people said they were chatoyant, meaning they had the changeable green-gold flicker of a cat's eyes.

niobe said...

Mad & Just Dawn: Glad to hear I'm not alone in my lack of lyric interpretation skills.

Thanks to everyone for your sympathy and support and to those who've commented or emailed me with ideas that have worked for them or their friends.

Yolanda: Silas is one of my favorite names and is on our very short list. Now, I just have to convince L...

thirtysomething said...

Well geez. Double Geez. I hope for you that it is like Slouchy said - 20 years no flare ups.
Thinking about you.

Artblog said...

Oh shitey, shites!!!

HUGS, HUGS, HUGS and another one :( :( :(

XXX

Dayna said...

I'm very sorry. I went through some painful, invasive and gross testing for a stomach ailment last February. It wound up being something "minor," I suppose, but when it acts up it hurts like hell and it was a very, very scary process.

My thoughts are with you. If you ever need to talk, shoot me an e-mail. In the meantime, we're all sending you our very best.

Beck said...

I hate The Beatles too! Let us swear eternal friendship.
Sorry about the stomach troubles. You and The Baby could have much in common.

Beck said...

I hate The Beatles too! Let us swear eternal friendship.
Sorry about the stomach troubles. You and The Baby could have much in common.

Beck said...

I hate The Beatles too! Let us swear eternal friendship.
Sorry about the stomach troubles. You and The Baby could have much in common.

Clementine said...

The second I saw your title I knew there was something about colitis in your post. Ha! Pretty funny.

I was away last week and didn't read blogs, but I want to say that I'm delighted that you're considering baby names. It's fun, isn't it? For what it's worth, we named our kiddo after three living relatives (my grandma and both of Hester's birthparents). I'd do it again in a heartbeat.

Best wishes for the OB appointment!

cinnamon gurl said...

That sucks! I hope you can get it under control soon. I love the lyric misinterpretations.

wannabe mom said...

ugggh. what a drag. thanks for sharing, that must have been difficult to do, and i hope that you feel better soon soon soon.

me hate beetles too.

Janette105 said...

Hey, good times! I have just plain colitis and IBS, which means they have no frickin' clue why I have so many, what I like to call, "episodes". I could eat the exact same thing 2 days in a row and be fine one day and perfectly awful the next. Nothing like a good colonoscopy! And I just started Infertility Treatments and I can hardly wait to see how I'm going to do without my anti-spasmodal drugs. So, as much as you probably hate to hear that someone else is having pain and troubles, misery loves company, and Sister, you are NOT alone. Eventually you will learn to cope and hopefully, somewhat, control it.

I truly wish you the best and will be thinking the happy thoughts for you, baby, and hubby (because even though you are having to deal with it, to a great degree, so is he). My husband is so frickin' patient. I wonder if I would be if it were the other way around.

I've often wondered what it'll be like to have stomach issues while being pregnant, assuming I get there. Not looking forward to that part. Just focus on the final result.

Hang in there!!

Intending To Be Parents said...

Oh man :( I had the briefest encounter with a colitis-type thing in college when I got ill and they gave me way way way too much antibiotic and it destroyed all my good bacteria. And that brief encounter was pretty miserable. Something that is chronic like that with all of those other symptoms has got to be terrible. I am so sorry :( I hope that it calms down soon so you are feeling better soon!

CLC said...

I had no idea that this was the disease you were referring to. I am sorry. It's a pain in the ass disease! Literally. I have been dealing with it since I was 10. I have only been hospitalized twice for it, but I was pretty ill both times. So they consider my case mild. I can't imagine what more than mild is. Check out CCFA.org for more info if you haven't already. Also, if you aren't having luck getting your symptoms under control, it might be worth a trip to the Ma.yo or something. They have an IBD clinic there, and doctors that specialize in just UC and nothing else.

SarahSews said...

Sorry to hear you have joined our not so fun club. I've had it since I was 15 (almost 20 years) and have a mild form too. No hospitalizations but some nasty years of all the "typical" symptoms. I hope you find a med that works for you and can identify your triggers. And a good doc too -- mine is worth his weight in gold.

BTW, mine does run in my family and diagnosis was still a bitch.

Hope you feel better sooN!

Queenie. . . said...

It looks like you unfortunately have plenty of company here on this, but rest assured, there's hope. I have a milder form called ulcerative proctitis (affects just the end of the colon). For what it's worth, I've had long spans where I've been in remission medication-free (for years, actually). An ear infection plus antiobiotics led to an intestinal infection which led to an awful recurrence this spring, so I totally feel for you. If you've been on antibiotics in the last six months at all, I would definitely supplement with probiotics (can be found at the health food store), as imbalanced intestinal bacteria seem to worsen/inflame the condition. When I was at the worst of my recurrence, probiotics helped somewhat. I also second the people that have said it comes down to figuring out what works for you, otherwise. For me, staying away from heavy carbs and drinking lots of water seems to stave off the symptoms. The best I ever felt was when I was on the South Beach diet, actually, although I love bread too much to stay on it permanently. Experiment with different things--it took me a couple of years before I had things figured out with my diet in a way that really worked, but I didn't have the benefit of the internet at that point, since that was a long time ago. Good luck, and hang in there.

Sarah said...

ugh, i'm sorry, i hope you find relief

Julia said...

Damn! I am just catching up, so I only saw this now. This sounds like no fun at all. I am sorry.

Betty M said...

Cathching up in reverse order. Sorry about the diagnosis - as a sufferer of a different chronic auto-immune disease I hope you end up like me in the group for whom the drugs do their stuff and that the symptoms are controlled even though they don't have the faitest clue about either cause or "cure".

Ahuva Batya said...

Niobe, I'm just catching up after having family in town and I just wanted to say I have a strong sense from your blog of how private you are, and therefore sharing this about yourself is very meaningful to those of us who follow your journey with care and concern. I'm very sorry you have this on top of the rest of life.