Thursday, September 27, 2007

The Saga Continues

When we left our heroine, she was in the hospital starting treatment for WG. And now, boys and girls, the story continues.

I was in the hospital for a total of ten days. Friends visited bearing gifts (the best thing I got was a bunch of oranges. They were do delicious, especially when all I had to eat was hospital food), I was asigned a social worker who I was snotty and mean towards, I watched a lot of movies, and I slept a lot. On the ninth day, I was well enough to go home but I was anemic and needed a blood transfusion. Of course, as soon as they told me this, someone came in to take more blood- I thought it was funny.

A blood transfusion is one of the most uncomfortable experiences I've ever had. It looked like black-cherry soda going into my arm and it was painful. The blood was cold so I could actually feel it inside my arm until it warmed up to body tempurature. Internal cold feels like a sharp ache. It's not fun.

Finally I was released. I wasn't allowed to go back to school for another week because my immune system was not up to snuff. I did go in to talk to my teachers one day around the time classes let out. I'll never forget the look on my friends' face when they saw me walking down the hall. It was possibly one of the best moments of my life.

The first week out of the hospital I was still sleeping most of the time. Some days I would only be able to stay awake for about two hours. The second week it was back to school. I had to drop most of my classes (thankfully I was a senior and had finished the classes I needed for graduation) because I couldn't handle being at school all day. Things settled into a routine of classes, pills, doctor apointments, IV treatments and sleep. At least my nose stopped bleeding. I suffered huge weight gain and "moon face" at the hands of prednisone (I hate hate hate that drug!).

Life went on. Eventually the doctor appointments were farther apart and the doses of medication got smaller. The physical affects of the disease dissipated, but the mental and emotional trauma continued. I was 17 fror fuckssake, and this completely disrupted my life. Not only did I nearly die at the age when we're supposed to feel like we're infalible and going to live forever, but my entire life plan was thrown off. I had never considered not going away to college right after high school, but it was suddenly not an option. I watched my life as it should be go on without me while I was stuck at home being sick.


I had to completely re-define myself. I could no longer be the energetic, outgoing, do-everything girl I always was; I would literally crash for days if I tried to do half of what I normally would. I had to learn to pay close attention to how tired I was and what was going on with my body. At 17, I had to suddenly think like a 50 year old (I think that's more or less exactly how my doctor put it).

It has been 5 years since I was diagnosed. It took two years to reach remission physically. Mentally, I only recently really came to terms with everything. I finally feel like I can handle what this means for my life. I have found the balance between hyper-vigilance and negligence. As traumatic and difficult as everything has been, in some ways I'm glad it all happened. The whole ordeal has really shaped who I am today. Of course I wouldn't be unhappy if I never had to worry about it ever again, but my life would be much less rich without it. And it's a comfort to know that I've been through all this shit, and I survived. That kind of strength is bound to come in handy sometime in life, right?

Wednesday, September 26, 2007

My Story

As promised, here is my personal tale of the Wegener's Granulomatosis beast! Some of it may be stuff I've already talked about in previous posts, but you'll get over it.

Once upon a time, or more precisely, sometime probably in November of 2001, I had a cold. It was a typical coughy sneezey uckiness that colds usually are, but it lingered a bit longer than it should have. After a while, I went to my doctor and he gave me anti-biotics. Funny thing was, the cold didn't improve. In fact, in got worse. I was tired and woozy all the time with a persistent cough. And I was having nosebleeds just about every day.

Nosebleeds are not a new thing for me- I've gotten them my whole life, especially in winter when the air starts to get a little bit drier and colder- so these didn't cause much concern at first. They started lasting longer and longer though and occurring two or three times a day. I was a little worried (and frustrated, 'cause you really can't do anything while your nose is bleeding), but when I mentioned it to my parents, they dismissed it. I had seen doctors about nosebleeds before, and they have never been very concerned or helpful.

Since my cold wasn't getting any better, I went back to my doctor who gave me another antibiotic. When he looked up my nose, like they do, he started a bleeder. After I bled in his office for about 15 minutes with no sign of it letting up, he sent me across the hall to the Ear Nose and Throat (ENT) guys. They managed to get the bleeding to mostly stop and then cauterized some bits of my nose. On my way out the door, it started bleeding again. So I went back in the chair and the ENTs cauterized some more. Again, as we were leaving, it started bleeding again, but there wasn't much tissue left to cauterize so we just left.

The end of December and the beginning of January are kind of a blur for me. I was still coughing all the time. I couldn't get a full nights sleep because I would wake up at 3 or 4 in the morning with a bloody nose that would last an hour or more. On New Year's Eve, I had plans to go to a party, but around 9 I fell asleep on the couch and slept there until 1:30. I slept through the big moment! I hadn't done that since I was 6.

When school started after winter break, I had a hard time getting through the days. One day, my nose started bleeding in the middle of my first period math class. I spent the next hour and a half bleeding in the bathroom. I just barely made it to my next class before it ended and I went home after that. I was light-headed from loosing all that blood, and I was tired (the normal state for me those days).

The nosebleeds started coming with pain. My nose hurt all the time, so I took ibuprofen for that. Not such a good idea in retrospect, as ibuprofen is a blood thinner and I was, you know, bleeding a a lot. It was a good day if I only bled for half and hour.

The week I went to the hospital, I went to school on Monday and came home before first period. I slept all day and went back for play practice. I had a fairly decent role in Macbeth and I didn't want to lose it. The next day I slept all day and just made it to rehearsal; the director ran through my scene really quickly and then sent me home. I didn't make it at all on Wednesday.

Wednesday night I had another nose bleed that lasted 2 hours. I was in tears from the pain and the frustration and the lack of sleep. My parents called my doctor (at 1 am) and he told us to go to the emergency room at Primary Children's Hospital in the morning. So on the morning of January 10, we did. At the ER, they ran some tests and took a chest x-ray. There were spots on my lungs so they said it might be pneumonia, but my other symptoms didn't make sense with that diagnosis. They decided to check me in and run some more tests. Once in my room, I called the drama teacher and told him I was in the hospital and wouldn't be at rehearsal. I also called my friend Cory, who I was supposed to go to Jr Prom with that Saturday and told him I couldn't go.

The next few days I barely remember anything. I slept most of the time. I was on morphine for the pain in my nose. Twice a day someone would come it and take blood for more tests. I must have seen every doctor in the area, but I was so out of it, I had no idea who they were or what they were doing. Finally Dr. Bohnsack figured it out. All the signs pointed to Wegener's, but he recommended doing a biopsy of some of the tissue in my nose just to be sure. So into surgery went I.

After the biopsy, my nose was packed with gauze all the way up to my brain (or so it seemed). I looked like Marcia Brady after she got hit with the football. The results came back positive. I remember not really understanding what it meant, but both my parents broke down when the doctor told them, so I knew it was really bad. The only thing I could relate Wegener's to at the time was AIDS, the only other auto-immune disease I had ever heard of. Naturally I freaked out.

I started treatment right away. I wont go into what it was, because I did that in my post yesterday. Actually, I think I may stop here for now. This post has been awfully long. I'll continue the story tomorrow.

Tuesday, September 25, 2007

That's SICK

Hey everybody! It's Vasculitis Awareness Week!

Anyone who has been reading this blog for a while, or actually knows me, or both, knows that I have vasculitis in the form of Wegener's Granulomatosis. I've blogged about my experiences with it before (click here to read my previous posts) and right now I don't really have anything new to say. I've been in remission for a little over three years (go me!) (knock on wood) and doing great. I have every intention of making it to five and throwing the biggest party ever to celebrate.

Even though I have blogged about some aspects of my Wegener's, I haven't really gone into what it is in general, or even how it specifically manifested for me. So that is what this post is going to be about.

Wegener's is a form of vasculitis that affects... well, it can affect just about everything. Mostly it goes after the sinuses and lungs and often will involve kidneys, ears, eyes, throat, skin and what the text books like to call "other body organs." Like I said, it can affect just about everything. I was lucky enough to only have it affect my lungs and nose, and only in a minor way. The last chest x-ray I had showed a little scar tissue, and my nose has gone a bit funny, but no other perminant damage.

So what happens in the affected areas is this: the blood vessels get inflamed and little clusters of granulomas may occur. What the hell is a granuloma? Good question. A granuloma is *ahem* an inflammatory tumor or growth composed of granulation tissue. I like to think of them as little clumps of yuck.

The symptoms of Wegener's are really fun because they are normal everyday kinds of things (at least at first). Some symptoms include: runny nose, nose bleeds, cough, fever, fatigue, joint pain, ear aches. So really, things that could easily be just a cold or flu. The trick is that they don't go away or respond to normal treatment (like antibiotics). There are also a slew of blood tests that can sometimes indicate that the disease is present. Often a biopsy is needed to make a diagnosis, but even that is only about 50% indicative.

Treatment is where is really gets fun though. Generally it involves chemo-therapy and steriods. There are many variations and combinations of different drugs that patients get, so I'm just going to tell you about me. My treatment lasted about two years. I started out with intravenus cytoxan and a corticosteriod (I don't remember what it was exactly. It made everything I ate taste really bitter though) while I was in the hospital. After I was released, I had to take massive doses of Prednisone and anti-biotics. I also had to go back to the hospital overnight every so many days for more chemo.

Eventually I moved on to taking cytoxan orally. As I got better my doctor slowly tapered my meds. About six months after the initial diagnosis, I had a little flare up and had to do a few outpatient IV steriods. Finally, I was able to move on to methotrexate- basically a matenence drug.

Well, this post is probably long enough. I'll post again tomorrow and tell you all more about my particular case. Anyone who read this is encouraged to share with everyone they know. Vasculitis is rare, and rarely diagnosed. A little awareness wont hurt anyone.

For further reading, check these out:
V.F. very dry explaination
Wiki entry

Monday, September 24, 2007

FAAAALLLLLLLLLLLLLING

Well, it's no use denying fall anymore. Never mind that the autumnal equinox was yesterday, we're having fall weather even... sort of. Gone are the insanely hot days of summer. I say good riddance.

Today in SLC we're having someone else's winter weather. It was cold and raining this morning. It hailed where I work and my brother claims snow. Actually, when I left the house this morning I did notice a fine white dusting atop the mountains.

The trees are turning (brown mostly, but some lovely reds and yellows), the heat is dissipating. Welcome fall!

Gawd, who blogs about the wheather? Apparently, I do.

Wednesday, September 19, 2007

Avast Ye Scurvey Dogs!

Ahoy maties, today it be International Talk Like a Pirate Day. It be a sad tale, lads, but if I were to partake in this here joyous occasion, I would be forced to walk the plank (so to speak, that is, I'd be fired). So I'll make up for it by typin' like a pirate and sailin' the high seas o' the internets.

Here be some stuff for ye:

You scored as Mary Read, You are very unconventional, you defy the rules as often as you can and like to take as many risks as possible. You will probably end up living happily under a bridge somewhere laughing at all the unsavory deeds you once instigated.

Mary Read

92%

Captain Jack Sparrow

75%

Captain Barbosa

75%

Black Beard

75%

Dread Pirate Roberts

42%

Morgan Adams

33%

Long John Silvers

33%

Captain James T. Hook

33%

Sinbad

33%

Will Turner

25%

What kind of Pirate are you?
created with QuizFarm.com


You are The Quartermaster


You, me hearty, are a man or woman of action! And what action it is! Gruesome,
awful, delightful action. You mete out punishment to friend and foe alike
– well, mostly to foe, because your burning inner rage isn’t
likely to draw you a whole lot of the former. Still, though you may be
what today is called “high maintenance” and in the past was
called “bat-shit crazy,” the crew likes to have you around
because in a pinch your maniacal combat prowess may be the only thing
that saves them from Jack Ketch. When not in a pinch, the rest of the
crew will goad you into berserker mode because it’s just kind of
fun to watch. So you provide a double service – doling out discipline
AND entertainment.




What's Yer Inner Pirate?
brought to you by
The Official Talk Like A Pirate Web Site. Arrrrr!





My pirate name is:


Iron Bess Flint








A pirate's life isn't easy; it takes a tough person.
That's okay with you, though, since you a tough person.
Like the rock flint, you're hard and sharp.
But, also like flint, you're easily chipped, and sparky.
Arr!

Get your own pirate name from piratequiz.com.
part of the fidius.org network







Wednesday, September 12, 2007

Pretty and Witty and Bright

I while ago I sort of mentioned flirting with the FedEx guy. It's totally cliche, I know, but he's kind of cute, and I have to amuse myself somehow when I'm at work, right?

Today when Cute-FedEx-Guy came in to pick up a package he actually hung around and talked to me for about twenty minutes. We talked about school and movies. Not a deep conversation by any means, but enough to move him from random-delivery-boy status to someone-I-actually-know-something-about. I can't decide if this makes him more or less fun to flirt with.

I'm curious though about what made him decide to stop and talk today. We've had short chats before, but nothing really more than small talk. What made him decide to stay and have an actual conversation today? I haven't seen him in a few weeks (he only picks up packages later in the day) and the last time he came in, I think I was kind of busy and didn't talk to him much.

Maybe next time I see him I'll ask his name.

Tuesday, September 11, 2007

All Right, Mr. DeMille, I'm Ready For My Close Up

Have you ever asked yourself, "If someone were to make a movie of my life, what would it be like?"

If you are one of my friends, there is a possibility that I have asked you, "If someone were to make a movie of your life, who would play you?"

One of my favorite sites for wasting time (Pajiba) posed more of less the same question to its readers which made me think about the subject. I have most of the people in my life cast already, but I never really thought about what movie it would be. There haven't been too many movies that really make me think of my life. And a lot would depend on what part of my life they made the movie about- the saga of my getting sick? My life as it is now (what a boring movie that would be)? My life in high-school? The summer of "The Book" (best summer EVER)?

Let's say, for the sake of argument, that it will be all of the above. An epic movie about the last decade or so of my life. It would start out like Mean Girls, then throw everyone for a loop by suddenly turning into something like an episode of House, but with a nicer doctor. Add a dash of angry teenage rebellion (White Oliander style?), but without drugs or alcohol, and a little bit more medical drama. Fold in a John Hughs type summer, the beginning of Two Weeks Notice and end with The Spanish Apartment (well, I'm not quite there yet, but a little flexibility with the plot is allowed). Spice the whole thing with as much High Fidelity as you can stand. Blend. Serve over ice in a chilled glass.

Was that complicated enough for you? Good.

I would be played by Maggy Gyllenhaal
Supporting roles would go to: (as some of my friends) Sara Silverman, Josh Hartnett, Michelle Rodriguez, Diedrich Bader (as arch enemies) Julia Stiles, Rachel McAdams, Heath Ledger (as family) Ashton Kutcher, Glen Close, Robert Redford, Angela Landsbury, Albert Finney, Maggie Smith. And I'll throw in a completely fictional romantic lead played by either Ryan Gosling or Bret McKenzie.

I hope they don't make this movie. It can't possibly be very good. And I imagine it would be slightly less than flattering to me. Great cast though, eh?

Friday, September 07, 2007

Tell Me All Your Thoughts on God

On my way home from work today I saw a bumper sticker that read like this:

GOD BELIEVES IN YOU - Count of Monte Cristo
Church of Jesus Christ of Latter Day Saints

I'm not mentioning it to get into some religious battle. I just want to point out that the Count of Monte Cristo is not exactly the best literary spokesperson for any religion. Do you really want to promote your faith with an egomaniac who became completely consumed by his desire for revenge? I certainly wouldn't.

As a side note, I saw this bumper sticker just before I heard the Manamana song on the radio ("mashed" with Jet's Are You Gonna Be My Girl). How's that for synchronicity?

Word, Everybody, Word.

I love Fridays. Yes I do. Especially beautiful fall Fridays like today (although it's not technically fall yet, but we're having nice fallish temperatures today in SLC, so I'm calling it fall, so there). Especially especially beautiful fall Fridays when I get paid. Nothing is better than a weekend when I have money.

(Now I want to parenthetically argue with myself about when fall starts. I guess you could say that fall starts after Labor day, in which case it is indeed fall already. Or, as I am wont to do, you can say fall doesn't start until the Autumnal Equinox, which isn't for another week or two. Or you can say that it isn't fall until the leaves start to turn, and who knows when that will be. I'm going to stick with the astronomical version, so my previous parenthetical statement stands)

I only wish I could get out and enjoy the day sometime before 5. Ah the burden of a regular, full time job. I might not mind so much (and actually, I don't really mind all that much anyway) if I had a little more to do. Or if I had a job that I really loved. Maybe I should start looking for another employment. I could just casually apply at the places where I think I would really enjoy working. Like indie bookstores and maybe the library. Getting a job at a library is complicated for me, but that's a whole other blog!

Well, I've gotten so off topic that I don't even remember what I set out to write in the first place. Oh well.

To celebrate the especially wonderfullness of today (being a lovely fall, Friday and pay day), I'm going to post an amusing video.




I couldn't find it without the subtitles. >shrug<

Tuesday, September 04, 2007

Farewell to Summer

Labor day is the unofficial end of summer, right? Even though school started (for me and many others) two weeks ago, thus ending Summer Vacation, and the weather continues to be impossibly hot, it's time to start thinking autumnal thoughts. So now is the start of swimming pools closing, summer concert series' ending and sweaters showing up in department stores. Labor day isn't really much more than a long weekend. A very good long weekend.

I took advantage of the free day away from work by trekking down to Durango, CO with my dad. It was our convertible/beer trip that we've been meaning to take since I turned 21. We just haven't managed to find the time.

Durango has a couple breweries that make very delicious beer. You have to understand that the beer part of the trip was all about quality, not quantity. We only had three pints each the whole trip. I brought quite a lot of beer home with me though. You can't really get good (not 3.2) beer in Utah. Just don't tell anyone in charge here, it's only slightly illegal to bring foreign beer into the state.

Besides studying the brewing arts of Colorado, Dad and I narrowly missed a meteor shower near Moab, wandered around Mesa Verde for most of Sunday, nearly froze to death (we had the top down and it was about 48°) going from Durango to Silverton and Uray, ate a lot of food and got a little sun. It was a long weekend well spent.