bravestredhead

Goodness!

In Uncategorized on November 2, 2009 at 5:23 am

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Holy cow — I was leaving the house tonight: just dashing out to the car to get a can of pop I’d left there, and it dawned on me that a year ago I wouldn’t of been so able to just “nip out to the car and grab that pop can.” NO, a year ago I was getting tangled up in oxygen hosing, nebulizer hosing, and iv hosing. Exhausted. In fact this time last year I was for lack of a better phrase, slowly dying. “End Stage” Cystic Fibrosis. Not pretty.

Last Halloween I was gorging on chocolate (about the only thing I COULD still do!) knowing that the transplant would more than likely make me Diabetic. (We were hopeful for transplant…though gaining fear slowly) This Halloween I’m glad to say that Tom and I played & sang music on the porch for the trick or treaters, handing out candy and country music before going ourselves to a Halloween party a mere three blocks away that would have seemed impossible  to walk to a year ago. Last night I screamed at a zombie movie without fearing it would send me into a coughing fit that would end in more blood than in the ghoulish movie. A year ago… ugh…  coughing blood was happening all too frequently (a the drop of a hat really) & a scary movie in summer 2008 did actually end in a horrific blood coughing episode for me. But now? I’m  staggered routinely by the promise in today.  Sure I have to take an insulin shot with my tootsie roll. Sure there are side effects & wrinkles…. but look what I HAVE!!!!!!!!! LOOOOOOK!!!!!! (Inserting frantic “pinching myself” sounds)

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This Halloween: a ridiculous costume, I am a character from the song Frankie and Johnnie! "...and the gun went rootie toot!"

In any event, I was out riding my pony again today. She gave  a good buck at one point which cheered me endlessly as she’s been skirting an illness herself : COPD. To hear her cough underneath me is gut wrenching. I love her so much and to think she might be felled by lung disease… Well, I’m just hoping the “horse pills” (Septra!) and Prednisone (yes! She’s hungry too!) will work. Vet says perhaps Ventolin is next… Eerily familiar drug names to me. And yet, today? Not one cough.  She was like a  filly.  We’ll take the good where we may.  A wonderfully written story about my therapy pony & her place on Team Transplant appears in this issue of Horse Canada magazine.

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November 1st, 2009. A year ago things were a lot less pastoral than today!

Anyhow, as I was easily nipping out to the car this evening to get that can of pop, I got quite emotional. SO MUCH has happened in one year. It’s astonishing. Those of you who’ve followed on the blog here from day 1 of the surgery, thanks for reading along. The desire is to reach more positive milestones & spread hope and awareness to increase the numbers of consent.

Watching the ones you love struggle is hard. In theory I always understood this as my parents, husband, & friends watched me and supported me through my illness. But to know it first hand: Yikes. Seeing Gypsy struggle is hard for me. But imagining my parents struggling is 100 times worse. I’ve spent all week baking and cooking packages for Mom to take to my Dad in hospital while he deals with some physical challenges himself.  Anyhow I couldn’t visit Dad personally as he spent half the week in the ER — no ward beds available — and me with no immune system? Gah!  Helpless, I baked care packages instead to drop off at the house…  Honestly Connie and John are admirable parents, but having the tables turned, well, can I just say that I admire them even more for always being upbeat and supportive. They’ve set a great example. I was pleased to have Mom deliver a little pick-me-up to Dad in his hospital room in the form of newspapers: both The Toronto Sun, and The Mississauga News featured yours truly on the cover this week to help in spreading the good word that transplant can change lives!

Please do come down and see for yourself at the Lula Lounge this Tuesday November 3rd. We will be celebrating the honest to goodness one year anniversary of when I got my second wind. (I am emotional just typing those words! Could need some water proof mascara.) What better way to celebrate than with the release of Lickin’ Good Fried’s new CD?!?! I’ll be singing with my new lungs with the new band. Singing Tom’s lovely songs. For jazz lovers, the stalwart Alleycats and I will open the show.  Nobody  can say if my donor liked country music or even jazz, (donor identity is kept anonymous in Canada) but I will say they are well adjusted now to those songbooks.

So, providing you’re in fine physical fettle I Hope to see you there! (Tickets $15 at the door. Or reserve @ www.lula.ca or just come to 1585 Dundas Street West, Toronto at 8:30 when it all kicks off!) Part of the proceeds will go to CARD, the Community Association for the Riding for the Disabled.

Very exciting. Apologies if it all seems like crowing. Not intended as such. Just bursting at the seams with enthusiasm,

Alex

ps: if you can handle one more reading recommendation, a Blogger friend named Natalia is a CF woman awaiting transplant. I remember swapping several emails with her as she made the decision to go “on the list”.  Well, her remarkable story was on the cover of the Toronto Star this week! Hopefully between the multiple stories she’ll get her lungs, as well as everyone else on the waiting list for organs who is hoping their pager would go off. We’ve got to keep up with supply and demand, damnit!

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