Just plodding along

Not much new to report. . .

Went out for the first time in a long time last night to see Private Lives with a friend-- great show (I'm not one to provide detailed reviews of plays, sorry) though the ending was open to interpretation. What's more is I successfully climbed the 5000 billion stairs to our balcony seats (Royal Alexandra does not have an elevator)-- with my 02 of course, and sweating a couple of buckets after-- but we made it! Although today all my muscles are slowly starting to ache. . . maybe I'm not in as good of shape as I thought?

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Pathetic Fallacy

Today, nature sided with my mood -- we clouded over, let ourselves be dark and released our inner frustrations.

SO tired of the lack of sleep due to treatments.
Tired of IVs.
. . . of CF being my life and definition.
. . . of being asked a million and one questions.
. . . of being sick on special occasions or my birthday.
. . . of temporary wellness.
. . . of living in limbo.
. . . of having barely enough time to take a shower.
. . . of constantly ordering supplies and booking appointments.
. . . of ALWAYS doing physio, that doesn't even seem to work anymore.
. . . of feeling like a 24-year-old trapped in the body of an 90-year-old.
. . . of being infantilized.
. . . of people telling me I don't look or act sick (though it is flattering).
. . . of being bored. 
. . . of exercising three times a week with (mostly) ex-smokers three times my age.
. . . of feeling unplugged.
. . . of being dependent on others.

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Status 2

October 24, 2011

Tuesday's clinic (before my brief admission) brought me a warning of what was to come, one of the first sentences out of the resident's mouth was "What status are you?" to which I responded status one-- not really giving it much thought because "status" has been a flitting topic all summer long, with most agreeing that status 1 was still suitable for me.

Next thing I knew, the resident returned with my doctor and we were discussing my 'status' with a new sense of focus-- no longer flitting. The doctor came up with an interesting analogy to illustrate her point: she said to picture my declining lung function as a slow descent into a pool. As you first ease into a pool you can still breath and the drops don't matter so much. However, when you're chin deep in the water, each drop, each tiny drop in lung function matters, and it takes just a tiny step more to drown you-- you just never know when that tiny step is going to be. Hence, the moral of the story is when you're chin deep in the water, it's really not the time to play chicken. 

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SOS for the SOB

October 21, 2011
. . . part two continues after an extended delay, much like the second half of those two-parter made for TV movies that you never end up watching. I tried Cipro for two and a half weeks, but it seems that it lost it's magic. The only benefit? It cleared up my raunchy breath, and the city of Toronto celebrated this minor feat.

Back at TGH, I learned that apparently no one at exercise rehab actually coughs--or coughs very much. As a result of this, after a few days of making a scene with my lovely, constant hack, one of the therapists dropped heavy hints that I should toss my hopes that Cipro would work again and revisit St. Mikes. Not wanting to be a disobedient little listee, I complied. Within 48 hours I had a quick appointment, PICC line inserted, and Homecare set up just in time for Thanksgiving weekend. 

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It's all Relatively Good

October 14 
 
I have a confession to make . . .
I found a more attractive option than this blog, and it has distracted me for the past few months. That distraction was summer, and for someone on the transplant list it was a relatively 'normal' summer, in fact I'd stretch the headline to read 'A Great Summer' relatively speaking. It's all so very relative. 

Now that I'm approaching my sixth month on THE LIST, I can say with confidence that-- after a quick scan of the exercise room at Toronto General, filled with people three times my age, shuffling from machine to machine on 15 L of oxygen-- that I, relative to that, felt 'normal'. I was fortunate enough to walk around the city without my oxygen for most of the summer (though later would discover that perhaps a little extra 02 wouldn't have hurt) and I was able to stay off Cipro for a full two months (which meant I could enjoy the sunshine without the worry of charring). I took ten weeks of French lessons (not sure how much I actually absorbed), celebrated my belated graduation with friends, visited my sister in Parry Sound, went to several TIFF movies, the EX,  enjoyed a few trips to Collingwood, saw my first Cirque Du Soliel show (Totem) and spent another few nice weekends just relaxing in Toronto. Not to mention I attended the biggest event of the summer: Couture Fashion for a Cure Found, which was even better this year (if you could believe it). I stepped back a bit this year and just focused on designing the program. In a way it was nice to just take the whole experience in from my front row seat, since last year I was so busy running around that I couldn't quite appreciate it all.

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