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.

Not sure what to think....

Anyone in tuned with blog world may have read speculation regarding the site Friends of Pepe - a blog about a girl with CF who is so sick that she's been in the hosp for almost a year.....while waiting for a tx for 2 years (which she 'got' on July 3rd to boot!) all while battling sepsis and a fever no lower than 99*F for the last year. While waiting in a hosp in the states - by many standards - her situation went largley neglected by docs as she waited, was constantly intubated and extubated, had lung collapses....infections with cultures sent off to MY hosp...blah blah blah....was placed on ECMO, medically induced comas, suffered from CO2 poisoning (high carbon dioxide levels that can incapciate you) was on high volumes of O2 even after tx.....you get the picture.

Reading that alone is enough to kill someone. For fuck's sake, having frigging sepsis and not dying of it after having it for almost a year would most likely kill Jesus Christ himself! Yet this person soldiered on...or so we thought....Transplant came last month and she got no better...she had innumerable impromptu surgeries to fix the new lungs...fix her heart....one such surgery even took place on the bed w/o anesthetic. Yeah...drastic and dramatic.

I never mentioned the site b/c I always had my doubts that it wasn't real, but still, at the end of the night, i said a prayer for this person....tho i found it difficult to locate that small chamber of compassion that exsist in my heart sometimes. But i still did...And then today the whole thing got blown to hell when it was discovered that this Pepe/Gina person doesn't exist, that their situation isn't real...and that it's all a sham.

People donated money. They sent gifts and they got their churches to say prayers. The site had over 270, 000 hits and each entry had easily 200 comments of encouragment....


All for what? A frigging fraud!

I'm not mad. Hell, I'm not even shocked. I'm simply baffled. As someone living with an honest to god illness - 2 for the record! - it absoltely boggles my mind why someone would want to glamourize such a situation! What kind of sick fuck wants to feign an illness they don't have? WHY FUCKING WHY!? I don't get it! It bothers me to no end, knowing that honest legit people like myself, Alice....everyone who i have a link to ( i hope!) have real issues... who deal and struggle everyday...and this sick fuck isn't even real!

It's enough to make me want to shut this place down sometimes.....I would never in a million years think of wanting to glamourize something like this. It's a fucking transplant, it's not Easter. It's painful, and scary, and isolating, and you pretty much damn well give up everything you have until that moment comes when your life is handed back to you.

I'd hate to think that my blog and my issues would inspire someone to fake something like that. Why?

What the hell is wrong with people?

Such is the life of a polyp….

A polyp is a nasty wee besom that lives in your sinus(es). When I was first diagnosed with bronchiectasis when I was 17, I was full of them. But when I went on IV antibiotics and every other abx known to man, all but one cleared up.

The one that remained resides in my left nostril, just low enough so that when I raise my face to look up my nostril, you can see it peeking out at the very back. It looks like a giant booger, and they can shrink and grow as they like.

Usually, if they’re bad enough, polyps need to be surgically removed, though the risk of them coming back is fairly high depending on the reason why you have them in the first place (if you have sinitus, like people with bronchiectasis and CF get on behalf of their respiratory illness), they will more or less always be there. You can get a flare up when you become stricken with illness or allergies…as I am right now.

I feel as if I am falling apart. If it isn’t one thing then it’s the other; if it isn’t pleurisy then it’s a polyp; if it isn’t a polyp then it’s some god for saken underlying mystery illness like my supposed inability to swallow. Oh well. I’ve learned that if there isn’t any pain then it’s time to worry. I’ve heard time and time again that bronchiectasis can be a very painful disease, which is turning out to be true. I’m constantly in some form of respiratory pain with this disease. It’s not always something specific (like pleurisy)…it’s just always…there.

I guess I can’t complain though. I could be out fighting a war perhaps…and I’m thankful that I’m not.

No, pleurisy is staying at bay, but my polyp is a flarin’ in the back of my nostril because of the weather. It’s muggy weather lately…humid, but not overly hot, and it’s muggy and drizzly and very crappy. When it gets like this, my polyp swells to mammoth proportions and traps snot and stuff behind it, leaving me very stuffy and unable to breathe. I can’t smell, or taste at the moment, and I sound very nasally and it’s quite unpleasant. I blow and blow my nose and it sounds like I’m getting stuff out, but it’s only the sound of the snot moving from behind my wicked polyp. I blow until my eyes water and the skin on my nose wants to catch fire, but I get no relief. I want to stab my face.

I fear that if this polyp stays engorged, my face shall explode at some point.

I sincerely hope this is not the case.

And just for the record before I leave: I hate you polyp.

Back!

I'm back! Back from the wedding that is!

1) Yes I brought O2

2) No I didn't use it

3) Yes i danced to my hearts content, and got out of breath

4) Yes i cursed the shitty state of my lungs

5) No I didn't give a shit

6) Yes I had fun

7) Yes I entertained another bridesmaids son with my copious amounts of drug paraphenalia

8) No I didnt sleep the night we stayed in the hotel b/c I didn't use my O2

9) Yes i was exhausted

10) No, I do not care about the consequences; tho I think i'm being struck down with pleurisy again on the left side

11) YES, IT WAS WORTH IT

That's a ginormous run-down of the weekend, which aptly ran from Thurs-Sun morning. By the end of the wedding night, my feet wanted to explode b/c they were so sore, and I felt the backs of my legs were so sore that if i dared to walk anymore that they might just break off and fall away from me and i'd be a puddle of torso in the middle of the linolium floor of the reception hall. But like I said, it was completely worth it.

By some great divine force, I felt relatively well during the whole weekend. I ignored my respiratory problems at great lengths, and at moments found myself forgetting and wondering how on earth it was that i needed a tx (adrenaline and denial are a great thing when they work together). Of course i'm exhausted today, as I was yesterday, and I think the almighty hand of illness is smiting itself upon me with another dose of pleurisy in the works, this time sparing my recovering right side and doing it's job to the left. I don't care. I just don't care. I lived this weekend - like a person, not a shell. I experienced, and it was great, and illness and being short of breath did not stop me b/c it didn't not exist. I didn't let it. Sure, I had to take ventolin a dozen times but w/e. To take 2 days out of life was fantastic. To be able to stand up for my friend and for once not let my probs stand in the way and keep my behind the metal door felt amazing.

I caught myself wondering today, as I stood behind the sink, that I can't possibly fathom of life w/o respiratory probs. The thought of being able to breathe and not have issues like this to stand in my way - like a normal person - baffles me to great lengths. I'm used to trying so so hard and always failing when it comes to breathing....by doing everything by the books and doing it all, only to see no results but failure. The fact that this time next year, I may very well likely be able to dance all night and not break a sweat, or cough, or lose my breath...the thought that getting dressed and being overcome with the immense urge to burst out laughing until my ribs want to break through my skin.....It's weird. It's exciting. And though I was so close to experiencing this myself for 2 days this weekend....it was still far away and surreal. But i'm glad i was given a window of opportunity to have a taste at the future.

Ok I've talked enough. Here's a pics from the weekend!

Wedding

Jess is getting married in 2 days!

First the good news: i'm feeling a lot better!

Now the bad news: i have heat rash on my face - again!

So i hope it disappears.

In sad news, i went to campus today and officially de-regsistered for the the fall semester:( It broke my heart to do it, and it ripped me apart to be on campus knowing that i won't be a part of the student population come the fall:( But at the same time, i know that i wouldn't enjoy it on behalf of a little something called needing a transplant. To go to school simply to attend class, and spend all your time doing homework, and not go to the bar, hang out on campus, partake in events and homecoming and stuff, that's no fun, and I want to use my last year wisely to be able to participate in that stuff. So if it means i have to wait to until i'm 100% better, that's fine. I"m not going to fuck up my last semester/year of uni by getting crappy marks and doing a half-assed job on things b/c i didn't have sufficient energy to do it. I wanna finish uni in style with a massive party and make memories that i'll laugh about until i'm 1000 years old.

You know?

I've decided for the wedding on saturday that i'm going to forget all my issues. I hope my lungs allow me to feel normal, and for once i'm going to allow myself to not hold back. I am going to be normal this weekend. Fuck everything. Fuck consequences; i'll meet them later. Rules were meant to be broken anyways, otherwise we woulnd't have any to begin with. O2 will not be accompanying me to the festivities; simply too much of a hassle. Yes my meds will be there so that's fine. I want to forget everything and just have fun. That's the bottom line.

Sometimes i feel like i'm standing in front of a metal door, and everyone can go through it but me. Somehow, I'm not allowed. Somehow, it's always in my way, holding me back, preventing me from fully emerging from the prison that is my lungs...they're shackles. I can only go so far before they pull me back. It sucks, but this weekend, I'm going through those revolving metal doors too and i am going to be a normal person. I don't care about anything else. I really don't.

Celebrate now; pay later, right?

Right.

I think that's it for now. I havent taken any Motrin today! YAY! Pleurisy is hopefully disipatting...or h/e the hell you spell it.

That's all for now! I'll write Sunday when i get back!

Week 1

It's been a week since i woke up feeling like i've been shot, and still the pain exists - in the exact same spot as it originated. Still in my upper right lobe, front and back. I'm not taking as much Motrin (just one when i wake up - no point taking any before i go to sleep since i'll be sleeping and won't feeling any pain.) I know that if i stop taking the Motrin the pain will come back horrendously and i'll be fucked. My friend Jess is getting married this coming Saturday, and me being awesome, am a bridesmaid. No one wants to be a bridesmaid in pain. No one wants to be a bridesmaid who suffer from a horrible bout of pleurisy.

It sounds like an STD.

"I have pleurisy. Stay away from me."

You get my point. We'll see how i fare this week.

Since Friday i've had no appetite, and i've had the chills. I go from feeling internally freezing and like my joints are painful, to feeling suddenly like a blazing clay pot. Then i feel fine. Since Thursday i've eaten 4 Mars bars tho. I got weighed on Weds and was 42 kilos, which is 92 lbs. Not incredibly cool. While it's a fairly normal weight for me, I know that if i get any lower than this i'll relive the summer i had last year, where i couldn't put any weight on and was so thin that it hurt to sit. I don't want that to happen. But having no appetite really...it's complicated. Oh well. I will be fine.

Um what else? I just made some Honey Mustard salad dressing, which will aptly be drizzled on the lettuce that i just plucked from my veggie garden. Yes my garden. Technically, it is mine and my sisters, but since she didn't contribute to physically putting the veggies in, i'm hesitant to hand any ownership regarding such matters to her. Also, I don't have much ownership myself, save for the fact that i admire the garden and it's flourishing behaviour. Truth be told, my dad planted it and i watched, b/c i couldn't follow the instructions properly on the seed packets and i couldn't breathe hunched over, and my dad eventually got fed up with me and did it. So really it's his...

But it's mine in my heart.

So i hope the salad is amazing.

What else? It was a year ago that my uncle Gary died up at the cottage. It's hard to beleive it's been a year since he left the earth. He was a great guy and no doubt he's greatly missed by everyone. As my aunt humerously put it yesterday when she called (my uncles wife), "Leave it to Gary to die on a long weekend so we wouldn't forget."

Put like that, I'm glad he left in his radical style. With grace, and a smile, and whole lotta humour.

That's about it for now....I'm sure everyone is itching to get their dirty hands on my salad. We'll see how it goes.

Better news...

I've mildly recovered from the previous entries rageful spewl against the notion of having a feeding tube inserted into my precious eating vessel. I thank the person (whose name I cannot remember) who gave me the names of different kinds of feedings tubes and made me see that it's not all completely horrible. Thank you for saving me from further insantity.

I think my worry regarding said feeding tube was the fact that i felt it meant that no drop of food, coke, booze or anything pleasant (omg bacon!) would ever graze my lips agains, and my mouth would dry, rot, and fall off, and i'd be mangled if prednisone did not mangle and bloat me to monstrous proportions already. Seriously, this was my vision. It's horrible, and it's drastic but i mean....have i not been shit on enough already in this life?? Seriously? To be maimed with the inability to swallow?? Yeah...pretty fucked. Tho, the hypothesis that i have been drawn to conclude to is this: what if said swallowing 'problems' are linked to my inability to breathe?? Yep that's right....bang on.

It's probably wrong but oh well.

Still have stabbing pleuritic pain in right lung. It has moved to the lower lobe in the front, and pinches and stings. I just took a motrin and it is working wonders right now - i am almost pain free. But me thinks we're getting sick:( I've been cold all day, and it was over 30*C today. I spent the afternoon shaking, my joints sore, and then i'd get really hot and then i'd be fine. And then the vicious cycle would start again. I had a hot shower and felt better, and i went on a hunt to find a thermometer and u'd think i could find it? NO. The only one i found was the one for the dogs marked 'RECTAL'.

A hot shower makes the lungs feel better. The lungs enjoy the heat. They do not enjoy emerging from the shower b/c the pain returns. It's the most odd feeling: it's like being in labour almost. Too bad it hurts to much to cough b/c i'd gladly cough out w/e the hell has taken up residents in les lungs.

Not sure why i'm potentially sick. Got Gamma last week. Oh well. I was told by a mother who's daughter has ADA SCID that there is a doc in the states who reads my blog. I freaked out, intitially running through my brain every bad thing i've ever said about doctors (b/c i say it so often) but it's never to anyone directly - i think. If you have questions, doctor, post a comment with an email addy or w/e and mark it 'confidential' if u must, and i should hope to get back to u if u want me to. If that's allowed?

It's weird...b/c my own parents don't even know i blog.

Oh well.

That's all children.