Anywho, I don't have any really epic stories of supreme highs or devastating lows. Mostly things have been even keel for the most part, though that keel has been slightly listing to port and taking on water bit-by-bit since my last IV run in July. As a result both the lung function and the weight have plunged back into the not so good and that means its time to get back onto the magic juice that is Miropenum and Tobramycin. On the good side it means in less then a few weeks my energy level will be back up, I won't be out of breath just getting up to go the bathroom in the middle of the night and I won't look quite so much like this guy...
I exagerate and use hyperbole for effect but, when the truth of the situation hits a little too close to the exageration that's when it's time to get off my butt, hunker down and get back to work. That means forcing in the calories (I know, I know, woe is me I have to eat fatty foods most people would die for), back to the gym (3 times this week and counting) and time to ramp up the cardio again.
What got me back to writing was reading a friends blog about some of the recent changes coming in the states for CFF events. Now the truth is, these changes have been in place at most hospitals and CF events here in Canada for a while. The basic gist seemed to be the following (forgive me if there's anything wrong here), at events only one CFer present at an indoor event at any one time, nobody with a history of Cepacia, minimum 6 feet distance should be maintained between any two CFer's at out door events.
Now all this combined with me being back on the juice got me thinking about something. I have a confession to make and it is going to come as a shock to those who know me fairly well, I ... wait for it ... am not a huge an of change. I know, minds blown, right? I wouldn't be too surprised to find out most Fibro's and Cyster's as well as any parents that have a big hand in their day-to-day care are not overly keen on change, especially when it has anything to do with their care. Our initial reaction is one of instant push back, no way, not doing it I want my old way back. But in truth, rarely are these changes earth shattering, nor do the affect us that much. My own recent change came when I started this recent run on the IV. I learned that my days of carrying around the man purse are no more. The reasons were legitimate, but even still my initial reaction was not one of instant and gracious acceptance. What that means is that every one of my doses has to be administered via the IV pole, meaning that 4 times a day I'm not going anywhere for the next hour. It also means that I can't just sleep and let the machine take care of things. I have to set an alarm, get up go downstairs do my dose and then head back up to bed. Luckily, I don't usually experience much difficulty with interrupted sleep. Is there more hassle, a bit, but there are good things about it too. It means helps me to keep to a regular eating schedule. Since I rarely am hit by that whole feeling of hunger as a sign of it being time to eat, whenever I am dosing, I make sure I take that as a cue that it's time to have a meal.
Now as an honorable send off to the great man purse that was my CAD Prism pump, my top three stories that it provided me with.
1) During the Vancouver Olympics it allowed me to enter GM Place ahead of all the lines and people waiting outside in the cold. It also allowed Carrie and I chance to be the only ones witnessing Jaromir Jagr's pre-game ritual of running stairs about five feet away from us.
2) Going into a movie on opening night and having the usher stop me because he thought I might be smuggling in a camcorder or something. Almost felt bad when I saw his face blanch as he turned white as sheet looking in at the tubes and wires and what not.
3) The classic first time I did home IV and saw a small amount of air in my tubing. I looked in the manual and all it said was call 911. I made the call and proceeded to sit on the front stoop. Fairly classic moment when within a few minutes I was looking at 2 fire trucks, 2 ambulances and whole bunch of confused EMS workers when I said I was the one they were here for.
Well, there we go. Back to it. If you read this far thanks for sticking with it through my ramblings and until next time, which I promise will be less than 7 months from now.