I am so excited you came by!

Sunday 4 February 2024

Are you there God, it's me Alison

Hopefully there is no copyright infringement in my Title this week. hehe ugh

Can you believe that we are already into February? This is a big month for me. Actually it's a big year for me.

Let the countdown begin!

Dear February,

As you know, we have some pretty exciting things happening this month. For instance, on this day 14 years ago, I spent the month of February volunteering with the Vancouver Winter Olympics. I should re-visit those posts, or maybe my readers can. If they are still out there. Today would have marked my 5th day in Vancouver I think. What a month that was. The city was electric my friends.

But, that wasn't the only excitement that happened this month. 

In 2 weeks, well 12 days, I will be posting the  most EPIC, okay I shouldn't say EPIC with such distinction. lol 

It will be amazing though. It's a big year. Not just a leap year, but a big year for me too. bahaha

STAY TUNED!!!!



Sunday 28 January 2024

No Bad Days

Like sands through the hour glass, so are the days of our lives "insert dramatic music here"

2023... where did you go?!

We are the last week of January, and... and... I don't know how I feel about this.

Well, I have lived another beautiful month.

Update on my Firefighting experience, well I still haven't heard anything yet! IT IS KILLING ME!

To my friendlies reading this

I am on the hunt for a gently used book called "Essentials of Firefighting 7" this is a college textbook, that you can buy anywhere, however I cannot afford the $200 it costs to buy it brand new. I have some feelers out to some of College going friends, where the Pre-Fire service courses are being offered. But if you or anyone you know, has a copy they don't mind selling to a die hard Fire enthusiast, suppressing them not starting them, You know where to find me. lol

I have taken this conversation on with my CF team in Ottawa, but I think I mentioned this to you all not long ago. They say "Go for it", "You know the risks..." blah blah blah. Yeah I risk working a job that I am passionate about, that drives me, that excites me, a job where I want to keep learning, keep studying... ME STUDY! I know I just checked my temperature, bahaha A job that I feel that my heart beats for, I bleed for, and I breath for.

"Let me go Bull" ~Axe to Bull in Backdraft

"You go, we go" ~Bull to Axe as they fall from a broken rafter. Axe to his untimely death, and Bull... I can't talk about it. I love you Kurt Russell.

A friend of mine has just opened a Montessori style school, where kids learn in a way that will excite them, that will engage them by using methods that pull you in. Doing the learning thing, with things that you are actually interested in. Where the hell was this kind of learning when I went to school. If there was one teacher, who would have seen the potential in me, who know what rank I would be in the fire services.

"I could have been a contender." ~ Marlon Brando in "On the Waterfront"

Friendlies, we will be starting the countdown.

To What, you may ask!

Well, there's a big event happening in about 2 and a half weeks, make sure to tune in each week, so little bit of this, and little bit of that. Each post will have a clue as tot he event I am discussing.  In fact February proves to be quite fruitful for my blogging skills.

Stay tuned for more fun and adventures to come.

#cfwarrior #cysticfibrosissenior 

LOVE LOVE LOVE

~Me


Sunday 21 January 2024

Don't Stop Believing

Truer words have never been spoken.

Well my friendlies, welcome the the third post, no 4th of the new year. Today we will be talking about something near and super dear to my Heart. Can you hear my heart beat through this post, WOOHOO, it's a pounding baby!

So by now you know I am an old lady who is telling you about my life with CF. At the ripe old age of 44 plus tax.  I am determined to do what my heart is passionate about. Keeping to this blog, like I intend to do this year. Well baby, Hold on, it's going to be a ride.

When living with a chronic illness, there are three kinds of people. --> maybe more, I don't know everyone. lol

The first being the ones, who mention it so if something happens to you, well someone can tell a medic or doctor "Hey she mentioned that she has Cystic Fibrosis" odds of them remembering what it's called is likely low, and usually end up in someone saying "I think it's MS" only because they have taken the CF for an illness that sounds like this but could be that. 

These people could be ashamed of what they have, or don't want to be treated any more different than the person next to them. Fair enough, it's your choice.

Then there are those that are the scientific almost Doctor CF patients. They know to the milligram the medications they take, they tell everyone that they have Cystic Fibrosis and go into the history of CF. The patients that know right down to the dust in their medicine box. Medicine Box or boxes, they have boxes and boxes of medicines that they have ever taken. They know the medical terms for their meds, and not the Laymen terms of their drugs. They are the ones that will tell their doctors, "Hey listen Drug one isn't working right, maybe we can increase.... blah blah blah" They could be doctors themselves. 

Guess they type I am....

NEITHER! bahahaha

I am the one who doesn't deny I have CF, I love my CF honestly. I don't brag about the medication I take, in fact, I take what my doctors tell me to take. They know what works for me, and what doesn't. THAT IS THEIR JOB! They have spent countless hours in labs, clinic and classrooms to be able to figure out what the fuck is wrong with us. So I let them do their job. You could ask my burse to say, "Hey Ali, what drugs are you taking?" my response would be "...the same ones as always, nothing has changed." "Yeah but what are they and what's your dosage?"... "you tell me, you have that information on my chart."

I am not a scholar by any means, I am an athlete first and foremost. I don't have time to worry about dosages and what that drug they have me on is called. I know the important ones, you know the ones I need to literally keep me alive. Myfortic, Prograf. And these aren't even the medical terminology used for these. So, pardon me while I look at my blister pack, to see what these are actually called... Myfortic is Tacrolimus I guess, and Prograf is... you know what.... DON"T CARE! I know when to take it, how much to take, thanks to my amazing pharmacy who give me a beautiful blister pack once a month with everything I need to take in the day, and when to take it. The magic of Pharmacies! Thanks Robyn and my team at Pharmasave.

CF can be a bitch, and throw you the nastiest curve balls, or we can roll with the punches, let the docs do their job, go to the appointments that they schedule, and just trust that they won't kill you. But seriously, you can know too much. I have a great connection with my doctors and specialists, I also have a better connection with my body than they do. When it doesn't feel right, I speak up. That is what we are supposed to do. I am not a doctor, so when I call, which is not often, they take stock, and get me in almost immediately.

You can know too much about your illness, and it's like WebMD, it can swallow you whole. I like to give my mom credit for this beautiful life that I get to live. We didn't look into all the drugs available to us, we didn't research every bacteria growing in my body. FYI it's only 2, one that I have had my entire life. I don't even know how to spell it. Pseudomonas Aeronautics or something like that. Honestly, cultures are not my area of expertise.

Why know more than you need? Why worry about the "I could get this" or "Others have had that, is that something I should be looking into, so I know before it happens?" This seems stressful to me, and would likely drive me insane.

We were given this illness to educate people. We all do this in different ways, and mine is to let the doctors be doctors. Yes I can change my own gripper, I can flush a line and restart a pump. I could be a nurse, because I take immaculate notes and record their time. I used to do this when I babysat, so the parents knew what time the kids ate, how long we played outside for and what time they went to bed. I love note taking, it keeps me sane. Just like diving deep into your illness will likely do the same for some CF people. Just not me.

I will never be a Stella (Five Feet Apart) I think I feel more like a Poe! lol

If you haven't seen Five Feet Apart, or read the book. do yourself a favor, and this will show you the different kinds of CF patients. However my kind, is not depicted. Well I have written your eyes out, yet again, so how about we break here for the day, and resume some more chatter next week.

If you are reading this and have any questions, please don't hesitate to reach out.




Feature

Are you there God, it's me Alison

Hopefully there is no copyright infringement in my Title this week. hehe ugh Can you believe that we are already into February? This is a bi...