D'uh we all do! Right?
Well, I have been doing a little soul searching lately. I have come to the realization that my dreams aren't conventional.
For instance...
I have been doing a whole lot of research on Cystic Fibrosis, the adult clinic in my areas hospital, wich is Ottawa, Canada's capital. I have been talking to our wonderful nurse coordinator, Ena! I am learning that our clinic has 124 patients, ADULT patients. This determination has brought me into the corner of stepping up for my fellow Cysters and Fibros. Let the constant annoyance of my dreams, be screamed from the roof tops, yelling at full lung capacity, and most of all, the teaching of how important adult care is, in the CF community.
These numbers are s of 2016-17: We are 124 Adults and 119 Children strong in Ottawa. In my hometown of Cornwall, with a population of 56,000 I know of maybe 10. I have been out of the loop for a little while. I get tired of having to ask people for donations, to spare some change for our Daisy Day campaign. Why can't we come up with new initiatives to raise money. People lose their daisy, their like poppies, once you buy one, it falls off, and you look like you don't care, or support, when clearly you probably did, and do.
So, a few years back... Ok so it was 10 years ago... I attended one of the coolest fundraisers for CF I had ever been to. Granted it was in Ottawa, where the CF chapter is huge, and support is in abundance. It was called the 65 Roses Gala, and it was sponsored by the Ottawa Senators Foundation, what that means is that there are Sens players in attendance. The Celebrity Patron for the 2 years I was there, was my friend Wade Redden. I love that guy! It was one of the single best experiences of my life, and I wished that our little town could do something like that.
Seeing as we, Cornwall, do not have an NHL team, nor do we have an affiliate AHL team anymore, I thought, why not have some sens players come hang out in Cornwall. Granted we have some NHL'ers here in town, but they are EX players. So why not do something with our Fire, Police and Paramedics, city counsel and such. Because no one would come. And so the thoughts persist.
I don't believe the Gala is in effect any longer, if it is, it's more subdued than prior years.
I've got dreams...
That one day, miracle drugs like Orkambi, won't cost patients hundreds of thousands of dollars to get their hands on. Why make a medication that no one can afford to pay. How is the lower income patient suppose to get their hands on life saving treatment, when they can't afford it. Does this mean, they will have to use the shit that doesn't work for them? We become immune to many medications, and this as well as lung failure, is the cause to our demise. Our body becomes immune to the meds prescribed to us, so we a forced to go into debt to be able to use the meds that work for us. Trust me, I know. Before transplant I had a medication that cost almost $10,000 a month, out of pocket, because OHIP didn't cover it.
This becomes an issue for all CF patients, but not just us but everyone who has to take medications, and their body just doesn't like it, or has become resistant to that drug. Resistant, that's the word I was looking for.
re·sist·ant
rəˈzistənt/
adjective
- 1.offering resistance to something or someone."some of the old churches are resistant to change"
synonyms: impervious to, unsusceptible to, immune, invulnerable to, proof against, unaffected by
In order for me to continue to fight for the rights of all Cf patients in Canada, and precisely in Ottawa Adult clinic fighters. I got your 6, we'll take this higher if we have to!
See you soon!
and remember to Love with all you heart, dream with all your might, and laughter is definitely the best medicine. make light of the hard stuff, because life is full of hard stuff, it's how you handle it that makes it... easy!
Love
~ A
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