Breathing Deeply: My Life With Cystic Fibrosis

It's been nearly 3 weeks since I was admitted to the hospital. It's been quite a ride. I've had some really great nurses and one or two duds. Thankfully I've been getting all my meds on time, with the exception of some forgotten insulin one afternoon. (But that's another story completely.)

By the way, Hi Kelly, it's Tuesday!

I saw my CF doc today and he said he's going to change up my antibiotics a bit and send me home on Thursday on home IVs. He asked more than once if we'd be able to handle the schedule, and I repeatedly told him that we've done crazier stuff in the past. The major thing that will be different this time is that I'll be coming home not only on home infusion therapy , but I'll also be needing oxygen round the clock. On the one hand I'm glad that such things are available; on the other, it's a little scary to think that I've reached the point of needing that. I'm choosing to be thankful that so many great things are available to help me be in the best health possible. I've been told there are even some oxygen cylinders that are small enough to put in a backpack type thing that I can take with me to the gym.

Getting back to the gym is very important to me. I need to try to preserve what little lung capacity I have left. That will involve some cardio and a lot of upper body stretching to make myself nice and limber. That should help with my lung function, even if just a little bit. I think exercising will also do some good for keeping my blood sugars under control. I hate being diabetic while on corticosteroids. It sucks out loud.

Another interesting part of my day was when I went downstairs for a patty melt. Mmmmmmm. The grill here in the cafeteria is pretty tasty. (Yes Auntie, I know you love hearing about made-to-order foods...haha!) Anywho, I bumped into...well, not literally because that would have been a bad thing...another CFer. It was a girl I had met awhile back when we were both in the waiting room of the ER. She's a good 10 years older than I am and truth be told, looks like CF has really worn her out. I chatted a bit with her husband while we were waiting for our food.

It's always a good feeling when I can make a connection like that. It makes me feel like I'm less alone in fighting this stupid disease. Don't get me wrong, my husband and family are awesome supports, but they are just one step removed from the "getting it" part of things. It's nice to know people who are fighting the same stuff I am. This girl, Leslie is her name, also hates looking like a patient when she's here. She and I were both wearing cute coordinating jammies that our families had brought us. We were each dragging an IV pole, and we both had on our masks to keep us from from spreading our CF cooties around. *note to those who are new to CF, CF itself is not contagious, but the bugs we culture in our sputum can be from CF patient to CF patient.

Well, that's about it for now. I'm sure I'll have more to blog about in the days and weeks to come. Be on the lookout for photos of my bunnies. I sure miss those little fuzzy butts!