Showing posts with label rare disease. Show all posts
Showing posts with label rare disease. Show all posts

Tuesday, January 24, 2012

Eh.. At Least It's Not The Gaza Strip

Being sick sucks...

It sucks more when your whole world is reduced to a two foot by 6 foot hospital bed, which is what happened to me about 2 years ago when suddenly I became inexplicably ill. There are quite a few people in our life who have heard this story and others who went through it with us. It was a horrible time for Chris because we had just got married (no, not because of that) and in addition to celebrating our first anniversary in a hospital wing (and letting his brother and my best friend go on our Hawaiian cruise), unbeknownst to me, he was being told that I was dying and they didn't know why.

We lucked out when they sent us (in an ambulance no less) to UCLA in Santa Monica where within days they diagnosed me and started treating me. However, in the meantime, I had lost my ability to walk (which apparently staying as little as 7 days in bed will strip you of this ability, so what the hell's up with "Misery", Stephen King? She breaks his feet, leaves him in a bed for months on end, drugs him, and THEN he's still able to get up and go? [I love Stephen King, honestly. I used to seek out his work after being forced - yes, forced - to read his work in a high school Horror in Fiction class. Yeah, I know...my fault. After being too scared and intrigued to put down "Salem's Lot", I was hooked. I found myself two years later in the horror section in the college library, picking up some guy named Richard Bachman, reading it and wondering, since I had never read any other horror writer's work, if everyone in this genre wrote in this style. {before you SK lovers start writing, yes, I know SK is RB, but I sure as heck didn't know it then. There weren't no Internet back then and my dinosaur was a bit slow on the retrieving my research off the microfiche...children, ask your parents about microfiche...or look it up on it's replacement, Google.}])... I love that I just had to use braces, then brackets, and then a parenthesis to end a thought... ah, the writer in me...


Anyway, these sorts of days can get very depressing and quickly. I think this particular day was one where they had done a lung biopsy AND a bronchoscopy... The lung biopsy is where they give you a sedative just to do the damn thing and then tell you that you're going to taste blood AND that they may not get it since it's only 3mm big and the smallest they've ever managed to capture was 10mm, so be very still or this could be bad... and then bad means that even with the patient nurse (ha, ha) standing in front of you holding you still and the sedatives strong enough to take Floyd Mayweather, Jr. down and let you dress him up like an Oompa-loompa complete with tiny overalls, you don't just taste blood in your mouth, you feel it in your lungs as you - get this - gurgle blood. You've been told not to move or speak, but even under the sedative you're quite convinced that gurgling blood was not an expected outcome of the procedure, otherwise they would have mentioned it. I mean, they bothered to mention that you might poo yourself and that hasn't...wait, spoke too soon.

The bronchoscopy is where they give you a drug where you're awake, but you won't remember anything. They have to do this so that you can tell them when you are feeling pain. I told them beforehand that I was feeling pain constantly so I didn't know if this was such a good idea. And she, the doctor, tells me that this is when I feel new and additional pain, only I don't remember her saying that because I'm already buzzed out.

Chris had to tell me later that's what she said. She also told me, apparently, to do a certain signal when I was feeling "new and additional pain", but it morphed into this strange sort of half Koko the Gorilla move where I beat on my chest with my left fist a couple of times and grunted. My husband thought this was hilarious. I know because, though I could remember nothing else, I could hear him in the room laughing like crazy while I was drugged up and I clung to that memory as they finished up.

The procedure itself is where they put two devices into your mouth and down into your lungs (hence the twilight drugs) - one to numb the way, the other a camera to capture the scenery of your interiors. The beating on my chest, though they tried to correct me because I was causing the camera to jiggle and record as though an earthquake were occurring every 16 seconds, was to signal to the one operator to spray basically a topical that would take the localized pain away while her miniature Range Rover scurried along inside my inner lung caverns. Chris remarked to her that it was like watching video gamers, the way the two of them handled themselves so easily and deftly. She told him it basically was. "Unless you get something unusual - and that's what we're hoping against - it's pretty much all the same. Cute lungs though." - which I guess translates into "pink and no smoking evidence".

So, after these lovely events, I was a bit worn out, mentally, physically, and certainly emotionally. Chris and I were picking at each other most days because I was frustrated and he was frustrated because I was frustrated and there was no one we knew in town. We bickered a little and I cried a lot because I didn't know what would happen and I was frustrated not knowing if this was the way I was going to be forever.

I rolled over and found a small pile of goodies Chris had brought up for me to entertain myself (other than the 4 local stations that were the only forms of TV found in the whole of the hospital. Cable, anyone?). He would get piles of my favorite crack - entertainment and gossip magazines, which of course I never believed a word of but instead treated like my own fairy stories to help me sleep. The top one, though, was the New York Times. On the front page was a woman washing her 6-month old baby in an abandoned bath tub in the middle of the Gaza Strip. I showed him the picture.

We knew the truth. Had that been me, had I been in the Gaza Strip, washing away, trying to survive, I would have been dead and nobody would have known why, and likely they wouldn't have had the time to find out or care. We had the heard the stories about how mothers would die even here in the US, and nobody would have a clue as to why until they did an autopy. We heard how only 15 years earlier they would have only have been able to extend my life by 6 months, and now I could live at least 20 more years.

I was lucky. I am lucky. Very, very, very, very lucky. Though the doctors originally had misdiagnosed me multiple times, one doctor had mistakenly given me a drug that extended my life long enough for them to figure out what was wrong and treat me. I ended up in the hospital where the two top people in the rheumatology field practiced and therefore got back on the road to being better within days.

I'm lucky.

I don't fight lions for my dinner and I don't have to travel miles for clean water. And it sure as heck ain't the Gaza Strip outside my door.

So now, when things are getting bad, Chris and I turned to each other and say...

Eh... at least it's not the Gaza Strip...


copyright - All rights to the work posted on this site are retained by Cass Van Gelder. If you'd like to use some of my work, please ask. To do so, the permissions must be spelled out in writing...from me...I meant it. I have mean cats; don't make me use them.

Wednesday, January 4, 2012

So... Writing (originally posted 04-15-11)

It's been difficult to write. Ideas are all in my head, but even just opening the computer has become an obstacle. I made it far enough to start reading through my old "The Sun, The Moon, and The Stars" script. I haven't edited anything because I'm trying to ferret out a better, stronger storyline before I start messing around with anything.

Part of what's holding me back is the change in my medications, too. Grrr... My body gets settled into one schedule and then Booomp, we have a problem. For now, I'm getting back up from the latest change and am seeing what I can do.

I'm trying to rest when I absolutely can, but I've also signed up to do "Annie" with Olivia, so 'rest' is now an operative word.

Cross your fingers that I am able to get back up on ye ole writing horse again... but that laundry is looking mighty fine...

Vomit Day - A New National Holiday (originally posted 02-03-11)

You know, I'm a good sport, generally, but man...

My life is not normal anymore, I get that. Off and on, I get pains that run up and down my spine like I'm being shocked with electricity (or maybe that's from being forced to listen to Justin Bieber's latest single over and over. Yeah, okay, so I'm not going to make the mistake of picking up my 10-year-old's iPod again). And because of my many, many medicines, pizza now tastes like wet paper towels and the Kmart women's bathroom floor (which, considering what some of the casinos' pizza places offer up, it could actually be wet paper towels). No, no, it couldn't end there. No, I got a cherry on the cake of my day when for seemingly no reason I started villainously spewing sickness everywhere, and I do mean everywhere.

Here's the kicker, it had absolutely nothing to do with my illness, my many medicines, or anything related to it.

No, no... the reprobate in this case? A smug vending machine at my office.

I've never been a big fan of vending machines, mind you, but dude, when I'm working late, I'm not bundling myself up in scarves, coats, gloves, and a jaunty little hat just to go grab some heat-'em-up burrito from the nearest AM/PM - which "nearest" in my case is still an unpleasant hike - and especially not in this uncharacteristic Las Vegas weather. (We get all the bad indicators of impending snow, but none of the delightful actual product. I get to spend 15 minutes in the morning shaving ice off my car windows with an over-the-limit credit card [do you think they'll give me a percentage off my monthly bill because their flaky card wouldn't hold up?] only to get a fever from exposure and a clear blue sky.)

Back to the vending machine.

I'm no fan of this particular vending machine because the dudes filling it are trying to get it taken away - I really believe this. Not only do they stock it with crap food, but it's crap food that's near its expiration date. Proof in point, I go down one morning to buy milk for my coffee, which I shouldn't be doing anyway because with all these new meds, I've gone from simply getting "the vapors" from drinking a glass of milk to being able to rehearse full orchestral pieces from my arse just from a nip of a Cheez-it. Be that as it may, I went down to grab me a carton and I find all but one container of the white stuff marked with expiration dates that are just two days down the road - both days of which are on the weekend.

Now let's all do that math in our heads quickly, shall we?

Two days....carry the one...take an undisturbed Friday... that's right, every single carton was due to expire while we were away for the weekend.

Nice...

Anyway, the whole office has been getting emails recently, telling us of the great demise of this vending machine. The chick sending the emails is channelling Sally Struthers with a small African boy on her lap staring greedily at the mayonnaise left over on her upper lip.

Well, today, I come in and realize my hoarded stock that I keep in my overhead cabinet is sorely depleted, so, what little is in my empty tummy starts scratching messages on my stomach lining for me to send down neighbors. Hungry and with guilt ringing in my ears (I'm nothing if not a properly raised Southern girl with a dash of Southern Baptist), I be-bop it down to said vending machine.

Okay, so this is the part in the movie where the girl talking on the telephone starts saying, "What do you mean 'the call is coming from inside the house'?' as she starts walking up the stairs, into the killer's lair, and the entire audience starts screaming for her to turn back.

Yep....

I didn't turn back.

Instead, I heated then ingested some depressing Dale Earnhardt, Jr. chicken sandwich which was like a sad little backwoods knockoff of a Chick-fil-a sandwich, complete with equally sad little pickle.

(Just repeating this description makes me want to repeat what occurred just an hour later)

That's right, before an hour had even passed, I was trotting back to the women's bathroom because "I wasn't feeling right". And while I was trying to release some chocolate hostages, as my ever-eloquent husband is wont to say, I inexplicably began projectile vomiting.

Seriously.

In the middle of everything and with no warning. It was like they had put up a bull's eye on the back of my stall door and I was practicing for our new Olympic team.

So, of course, after the activities finally came to a halt, I packed everything up and started for home. This was due less to the fact of the vomiting than it was to the fact that my pants' legs were now delicately decorated in the loveliness that was now a wafting, yet haunting smell of my later afternoon activities.

Yeah, I reeked.

So, I left to come home and change and try to finish some work here.

Driving home, though, I got more and more pissed the more I careened down the streets. Why, pray tell? Why? Why get mad?

Because, as aforementioned...ain't I got enough? This disease... these medicines... these side effects.. what, that's not enough?

....apparently not.


But that's the way it is with us normal people, right? Every time you think this is all you can handle, another truck pulls up and dumps cement on your brand new car.

Not that I'm signing up for that....



So, for tonight, maybe I am just a little normal. A little. Or at least I get to pretend.

So, see, there is an upside. At least, that's my story... for now.

The "Technical" Writer - originally posted 01-30-11

Blogs...

bluh....

I've never been a big fan.

Seriously.

But, I got frustrated one night. For years, I've been calling myself a writer - and technically, I am. I am a technical writer. And I'm good at it. I've won awards. I've been hired at phenomenal rates. I've been courted by some of the most amazing places while I'm still working at an amazing place. There's art and creativity to what I do and generally, I'm given a lot of leeway.

But, the kind of writing that calls to me, is not this kind of writing. Instead, it's the same kind of writing that, even though I adore it, I generally run from it.

It's true. Stupid, but true. I have no idea why. I can sit down to 4 hours of nothing but lovely silence, a house, dripping in solitude. Construction stopped for miles around, children in school or in some playground where the Quiet Game is all the rage, and the animals even in our house are sleeping like they've pulling all-nighters at the Quad with their fraternity brothers and are sleeping one off.

Bliss.

This is what it looks like.

But no.

Suddenly, a yellow light seeps from under a door to my right. It twinkles and beacons. It wiggles its hips and gyrates like I've got a hundred bucks worth of ones in my pocket and it's gotta make rent by morning. That's right. It's my laundry.

Within second, my laundry becomes the most magical and delightful thing in the world and I must go to it instantly.

And don't kind yourselves into thinking, well, ya wench, why don't you just do the friggin' laundry and get on with your work. It doesn't work that way. No, everything - ANYTHING - is a distraction. I get this idea in my head that absolutely everything in the house must be perfect before I can sit down and allow myself to write. Clothes must be cleaned (as previously mentioned), rooms must be neat, beds must be made, walls must be painted, photos must be hung, drawers must be neatly arranged, the pantry must be labelled (and yes, I did stop typing mid-title to go tackle that very project, which ended up not only usurping my 4 hour window, but the following 3 days).

I've asked around to my other writer friends and apparently, I'm no different. We all do this on one level or another.

So, since this is not a mental disease or device that I can just wash away with two tablets of the latest drug and some water - at least that I'm aware of - I decided to start searching for ways to solve this problem. If nothing else, the search in and of itself would be yet another distraction.

One of the first things I did was to hop on the National Novel Writing Month project. I think it goes by a different name, but I'm way too lazy to look it up. (Okay, I looked it up anyway. That took at least 3 minutes, at least, the way I went about it. http://www.nanowrimo.org/. Suffice it to say, I was so competitive, I did my required 50,000 words way before the deadline, and rather than use the rest of the time to write more or to edit what I did, I just sat back and made plans about shellacking the kitchen cabinets. I didn't actually do the shellacking, I just made the plans.

Anyway, since I did actually get product from the process, I thought, you know there's something twisted about this but it might just work if I started framing my writing around self-imposed deadlines. Now, I don't know if competing against myself is going to work, but we'll find out.

Still, I'm not convinced. I mean, it did take me another 2 months to finally do this (though I had been planning with my friend, Val, to create a professional website for my writing career for the past year - yes, year - and still hadn't gotten further than 1 meeting into the project. [completely not his fault]).

So... now I start this.

Here are the parameters:

I've given myself until the end of 2011 to take my original 50,000+ words and all the scribblings I've done and put them all together and create a viable, solid first draft to send to my agent - the lovely and patient, Amy Rennert; who may actually not even remember my name by this point, considering the roller coaster I've taken her on.

If you want to know why I've given myself so long, I'll start all this by being completely honest.

I have two rare diseases (likely I will talk about them at various points, and by talk, I mean I will whine about them. I'll try not to, but it's hard sometimes. I'll try to edit my whining to a bare minimum, unless it adds to the story.).

I have Wegener's Vasculitus and some rheumatoid arthritis variation that interferes with, you guessed it, my writing.

I have to be realistic. There are going to be days when I won't be physically able to write. But I want to succeed and not make me want to crack my own head open with a iron pan, so I have to be reasonable.

So... journey along with me if you like.

I'm happy to read comments, especially those that are encouraging and even more so, those with questions. If you think I'm lame, please, don't write that. I'm already well aware of that and listen to that internal radio station every day of my life. I think Anne Lamott calls it KFKD, I don't need it in stereo, If it's constructive, I take that back. Ah, crap, I take that back, too. Write what you like. Maybe it'll get you started.

So... here we go. Wanna?