Brain Purging

It's time for me to get my shit together. Get my ass in gear. Start moving forward and stop living in the past. Get out of this lazy funk. That's one major downside of transplant, is that you get used to living and having all this free time, that when you actually need to do things, it's hard to find motivation to do it.

Things I need to do:

1) My OGS volunteer work

2) Job hunt - which i always am doing anways

3) Decide on what sport I will be competing in for the World Transplant Games in Sweden next year

4) Start training

5) Go to the mall and pick up another travel book, since it looks like my euro-trip with Evlyn is out:( I really really want to go, but after the games next summer in June, if i went on the euro trip, i'd be gone the whole month of July, and I need to be here because my sister is getting married next August 6th, and I'm the maid-of-honour so I kinda need to be here. BUT! Eve and I will just do another trip! She wants to come here to Canada so maybe we will do a contiki canada tour? Either way, we'll do something

6) Pay fall tuition fees - hate reminding dad of that, ugh

And then there is the immediate stuff i need to do, like go back to the docs for another antibitic. I'm not sick again per ce, because after pneumonia i went on an extra 7 days of Avelox because i was coughing a bit of shit up, and i wanted it erradicated. We had a feeling that it wouldn't work, and that i would begin to become resistant to it, and that is the case. I feel like the Avelox worked abit, but there is still a small bit of mucus in my main bronchus/trach and i want it gone, so i'm going in for an 'emergency' visit today to get something else....It works out, because i also discovered a nice massive bit of heat rash on my scar. Wonderful. Beautiful. Amazingly magical. It doesn't hurt, because i have no feeling under my boobs, but it was flaky after my shower this morning and quite gross. So in all actual-ness, it works out, i can kill two birds with one stone: get a new antibiotic, and get a topical cream for my wonderful rash.

Another immediate thing I need to do/already did, was email the woman who has been contacting me for RecylceMe about how I can fundraise in order to go to the games. I'm glad I did it now as opposed to in the winter when time would be coming to a close. Ugh. So much to do....so so much to do. And this is not including my fall course (which is a first year and once a week so really, not that bad) and then be a maid-of-honour for my lovely sis. I need to figure out how to do that, because I don't know how to be a maid-of-honour. Maybe a maid-of-laziness but not maid-of-honour.

Oh yes, I also wrote back to my donor family. Will give it to my co-ordinator at clinic next Monday.

Ok. Brain has been purged. I feel better now.

P.S. Alice got married on August 7th - my one year. And i've seen the pics and she looked so gorgeous that i shed some happy tears for her. It seems like yesterday that we were both waiting for our transplants and wondering if we'd ever get married...and alas, she has! Congrats to Mr. and Mrs. Chris and Alice Vogt! :)

Mozel Tov

I feel like i'm dying.

No, not in the physical sense. The body is alive and well, but mentally, i feel like i'm dying.

This is normal, of course. I go for my monthly IV next Friday and i always begin feeling like this exactly a week before I need to get it. Having a blood disease sucks. When I need to get it, I just feel lethargic, mentally numb, blah...and yeah, I pretty much just want to lounge on the couch and not be bothered. I just feel unmotivated, low on gas, can`t be bothered.

Like i`m dying.

Anywho...

I made 4 loaves of bread the other day. Multigrain Mama bread to be exact, sent from the Wilderness, delivered to my door, directly into my tummy. It was fabulous, and my next recipe to tackle will be Newfie-land Partridge Berry Bread. Mmmmmmmmmm.

Today, I`m having a huge prednisone fail. I just can`t seem to stop eating. Cheerios, orange, watermelon, 5 oreos, Nature Valley bar, crackers, then spaghetti. All i want is an extra large tea which i shall promptly go get. And maybe a donut since i`m a humungus pig.

What else?

I think that's it, but i'm sure I'll think of something the minute i log out.

Now comes the scary part

Life.

Oh life.

You slap me in the face at the worst of times.

You scare me when you creep up on me and remind me that it is time to remove myself from my sick little bubble that has kept me safe for these past 2 years and finally emerse myself into this world called 'life'. While it was not the most fun thing I could have ever done, you did have perks: worries were small; things were taken day to day; my days were governed and planned by how i felt and how much energy i had; i wore sweatpants all the time; i didn't need to worry about going out and finding a job or being back at school; i had no commitment to anything.

And now...I'm 5 months out, and while no one forced me to enroll back in school, i've got 1 online course that i'm doing and already feeling stress for; i want to start applying for jobs so i can get work and make up some much-needed money, maybe finally graduate in the spring(?), work a lot in the summer (which will be fine b/c i won't have academic commitments then - weeeeee!)...and maybe apply to a college to go through for counceling? We'll see...

So yea. I've been a ball of stress trying to make my way through this crazy jungle called 'what the fuck do i do now, life?' phase. It's scary when it just shows up unannounced. I no longer feel safe and protected by having the leisure of saying 'i'm a student', because honestly, i'm way past being a student, i want to be out there and doing a normal job...or at least something more focused rather than an undergrad.

One. Thing. At. A . Time.

I know.

But fuck.

Life. You're here; but why must you be so scary!?

Allow me to get philosophical on you for a second...

This thought occured me to me the other night while i was somewhere in the realm between here and sleepy land. I was drifting away when this idea engulfed my brain and flourished itself through my hemospheric wiring (oooh...ahhh), and it was kind of as if a white light flashed itself into my brain and lit the whole place up.

It is this: there is an end to all of this, and be thankful.

I know I spend a lot of time bitching and moaning about how much i hate waiting, how i feel so shitty, how everyone around me is getting done and i'm still waiting. I bitch and moan about the ppl who talk to me and i write off their comments by telling myself that they just don't understand. And then i get miserable and descend into my dark cave and cover myself in a shroud of cobwebs and negativity.

But alas my people, i emerged my the rubble of my torn up thoughts and saw the light out of this shithole: there is an end, and i should be thankful.

Why? Well first of all, i'm thankful that i'm actually listed, and not still in the horrible process. I'm thankful that soon all of this will go away and I will be breathing through the generosity of someone else. I am thankful that lung transplant is even an option for me at all.

Most of all, I am thankful that I won't have to live the rest of my life on the cliff of obscurity, watching my life and my days go by...I won't have to watch everyone get on with their lives while i sit on the sidelines and try to live through them. Because soon enough, I will be one of them.

I feel sad for those who transplant is not an option. I feel terrible for those who feel as terrible as i do and there isn't a damn thing they can do about it. And while i'm irked that i have been waiting for 15 months, at least those 15 months are working for me instead of against me.

And what i'm thankful for most of all, is that this all occured to me when i wasn't making an effort to have coherent thoughts. That maybe all along, i've known this, and have never acknowledged it.

A little irked...

Yes irked, not frustrated. I rather enjoy the word 'irked' and it fits perfectly into my present mood, so stop before you start your inquiries!

I'm a little irked today...all b/c i got some fucking phone call from the hosp while I was making banana chocolate chip cookies today informing me of not only 1 new appt, but 3! For starters, lets recount any present appts (like tomorrow) and I'll fill in the blanks with the new ones, shall I?

Tomorrow: CT Scan. Boo.
Aug 29th: Gastric Emtpying test AGAIN. BOOOOOOOOOO.
Oct. 1st: meet with GI specialist who will help me conquer my inability to swallow. BOOOOOOOO CRAP BOOOOOOOOO. DO NOT LIKE. DO NOT WANT
Sometime in the future: Meet with tx doc after meeting with GI specialist who will cure me of my swallowing ailments.

Great fucking great.

So do you know what this means? As it stands, tx will not likely happen for me (at the earliest) until October(when the sort out how to fix my new problem)...which means 2 more months of waiting. Initially, this entry was going to be full of "i'm- so -angry -I -can't- beleive- it- i -want- to -disembody -something/someone" and I was wondering, honestly to god, if i must have been Hitler in some past life or something, in order to deserve having such shitty health things bestowed upon me. Did i comitt mass murder or something? I've been avoiding adding 'not being able to swallow' to my list of health problems, for obvious reasons. My resume is already full of odd ailments, such as SCID, Bronchiectasis, and now "Can't Swallow". This then lead to thoughts about how I would introduce myself to any future husband, what with my probs, and it was like this: "Hi my name is Bree and I have this this this and this, and I cannot swallow when i eat". Even tho I feel alone -and sometimes very much am - I know other people who have far more bizarre things than I have, and for more ailments than I have to boot...But still...it only adds to the list of things that send me further and further into the sea of abnormality..while all the normal people watch from the shoreline...

*smacks self*

But then I thought, "Fuck off, self. You're being selfish. Shut the fuck up." and I did, and I realized that complaining about waiting another 2 months is rediculous. Even if I wait 2 more months (when they can determine how to go about this supposed swallowing problem), tx can happen at any time (they are worried that post tx i could asperate food into the new lungs. Understandable, but still angering from my perspective).

So yes, instead of bitching and moaning like I had intended, I decided to rationalize with myself and realize that waiting 2 more months isn't completely horrible. It will total my waiting time to 5 months (since I got listed Apr 29 and my GI consult is Oct.1) and even then...IT'S NOT A LONG TIME. Christ, I have friends who waited 2 years. I'm being a baby about it. I have too many expectations me thinks. They need to stop. I never have expectations for myself personally, b/c when you don't you can't be let down. Many people will see that as having a lack of faith in oneself which isn't true. I have faith in me; i just don't always expect much. Especially when you can't breathe.

So, instead of being angry, I'm thinking of all the possibilities that could happen in Oct after my consult with the GI specialist and hopefully soon after a meeting with the tx doc to see how this will work out. Tx could happen in Oct. That would be wicked. I began to think of all the amazing things that tx could potentially crash.

Again, I present a list:
- My nana and papa's 60th wedding anniversary (Oct 19th). What better way to congratulate people on 60 years of marriage than by getting a call informing them that their granddaughter is gonna get a tx. Slightly morbid, but extremely exciting.

- My mum and dad's 27th wedding anniversary (Oct. 10th). Happy anniversary mum and dad...I'm saved.

- Thanksgiving. Ooh....ahhh...

- Midterms at university are around this time. What better way to distract my friends in their final year then by sending them a text informing them that my life could potentially be back on track in no time. What better way to ensure someone will fuck up than giving them this enjoyable scrap of info than before going in to write a midterm worth 40% of your final grade. Thoughtful, on my behalf.

Devils Night: Creepy....but cool.

Halloween: Incredibly cool.

So see, all is not lost. Hopefully tx will come soon! i can't keep wondering when it will be...I have to stop but that's almost impossible sometimes. Surely, I'm not the only one who wonders these things for themselves. I find i set little dates when I think it will happen. Obviously it hasn't happened yet. I was certain that by this time last year, I'd have it, and looky looky, here I am.

Hopefully this time next year? Is that safe to question?

I think so.

I'm melting I'm melting...!

...Oh what a world, what a world!

It feels like hell outside it's so hot. The air must be 1000% humidity and 0% air. It's sweltering and if you stand in the sun you'll prob go up in flames, but i completely love it.

Welp by now you all know that Krys to the tal is back from Icey-Land and that we're all ectatic and all that. Last night we all went over to Krystal and Tara's and ate ate ate and got silly silly silly. It was a goreous night out and we spent about 2 hours outside watching a lightning storm. I made several failed attempts to get pics of the lightning but it never happened. My camera hates me. I am destined to never get a snap shot of lightning ever.

Ever.

It's ok though, b/c we spent the night being silly and loud, and at one point I got the bright idea that we should lay in the middle of the road 'like whales' and take pics, and we did. I am covered in mosquito bites today (albeit none on my toes this time - yay!)And it was fun, and suprisingly we werne't under the influcence of any alcohol but i'm pretty sure it doesn't look that way. Regardless, it was great to be with my favourite girlies and to have some fun in the summer weather. We agreed that we all feel complete now that Krystal has returned to Canada.

Today was goreous. It was 34 and felt like 40, and while it was sweltering i loved it. It was so hot that I was exhausted from doing absolutely nothing and had a little nap on the couch as Oprah was on TV. As I was drifting off I could hear Oprah talking about Barbie and slowly my thoughts turned to Gymnastics Barbie (c. 1996 me thinks), and suddenly, I was doing backflips and my leg kicked out and i kicked the table in front of me right in the leg. And thankfully i was alone b/c it probably would have frightened someone.

Tonight was the night that things are made of: we had the gazebo twinkle lights on, it was hot and humid and i could smell the faint scent of citronella, freshly cut grass, and my shampoo and conditioner. I let my hair dry naturally and I loved nothing more than being outside soaking up the essence that is summer. I just plain fucking love it. This is what i live for. I didn't give a shit about any thing or any one, I was in the moment and it was perfect.

I remember on nights like this when we were kids, the kids in my neighbourhood would play Hide and Seek for hours on end. We'd run to our hearts content, and no amount of tiredness could stop us and make us go inside. I remember laying in the dewy grass and looking at fireflies and watching the stars...trying to see shooting stars and beleiving that we did even though we probably didn't. I miss the days when nothing mattered I guess...when nothing was holding me back.

Tonight when i sat on the deck, I wasn't a prisoner of my condition. I didn't think about it and I didn't feel it. I cannot wait for the day that I wake up and the constant pressure that feels like a cement slab that's laying on my chest is gone. I just want to be free of this. I think it's time.

I'm excited for my transplant.

I'm excited to feel like a 22 year old and not like an 80 year old woman.

I am a worrior.

FUCK YOU LUNG DISEASE!

Maybe i've said too much.