Sleeping with O2 & percussing

And all there really is to combat anxiety of illness, is action. It's what I've come down to. A powerful, and frustratingly late lesson. Even when it doesn't work, action is soothing and gives you a sense of control that is so desperately needed.

4 or 5 mornings ago I woke up with the worst foggy/painful-head. I occasionally wake up with headaches, but its very occasional and I assumed that when it was time for me to offcially wear oxygen at night, they would be constant. I decided 5 days ago that it would not hurt to try sleeping with my o2 at a low flow rate to see how it goes. One of the (many) things holding me back was worrying about how loud the concentrator was, and its effect on my, but particularly my husbands sleep. We thought of putting it in the kitchen and winding the tubing to our room. Worked well. When I woke up after that night, I felt a clear head. It wasn't a lack of pain that was striking, but the clarity. I immediately thought this was probably pretty overdue.. Its frustrating how subtle it comes on though. For those of us who drift down in lung function with few exaccerbations and admissions, its really hard to catch the moment of change. Nevertheless, I even feel that some of the anxiety symptoms I was getting in the daytime have been lessened by this... I will have to bring it up at clinic.

Another change I've made recently is being committed to doing more physio. My 3 years of consistent one-a-day physio has had its run, and its time to up my game. Recall that I did very very little physio for all of my teen years/young adulthood. Close to none, in fact. I finally realized, after many attempts at a second physio with my flutter, that maybe if I did percussion, I would be more compliant. Lets face it, percussion is easier. When you stick a tool in your mouth and exercise directly from the organ that is dying on you, it's very wearing. I was always known to make things harder than they needed to be.

So, I decided to bring back the percussor into my life. I had one last when I was maybe 8 or 10. I ended up getting the Eper500 2 weeks ago. I went through hospital channels and therefore did not actually choose my percussor but its kind of nice that I know the family who created this one have a daughter with CF and therefore understand the whole process, lifestyle, challenges, etc.

I wish I could coach noncompliant teens like myself through CF. Actually, I never even considered myself noncompliant. . I really just trusted that I was going to be okay, despite what the numbers were saying. I mean, when you feel like crap, often you don't realize it until you are made to feel better and can see the difference. My first admission went like that, and was the first step on the road to my changing. A step I fought for years. I swear if I can get through this leg of my journey and come out the other side I will help as many CF'ers as I can to see everything as it really is. There is too much at stake to wait to learn.

Why my dog was worth $600

THINGS BAUER DOES THAT MAKE ME LAUGH TILL I COUGH (or just cough):

1.) When he was a puppy and didn't understand percussion and hopped up on my lap and pawed at my chest and my husbands percussing hands till it looked like he was trying to give me physio himself

2.) When he wants food/a waterbottle/an out of reach toy/attention/to go outside and he barks in all different tones until it starts to sound like talking or weird pathetic garble

3.)When he randomly decides while I'm laying on my side for physio that I'm his female mate (need I say more?)

4)When he meets the oxygen delivery guy for the first time and instantly ADORES him more than any other new person and licks him to death while the guy tries to explain the sheets I have to sign

5)When we're in the park eating lunch on the grass with him off-leash and of all places he picks RIGHT BESIDE ME to take a big dump

6)When I'm not laughing, but gagging while picking up something gross he has left--I still cough tons!

7)showering him when he makes me fight to the extent that I take a shower as well

and soooo much more. So thanks Bauer for being the cherry on my physio-sundae :) and my company while daddy is at work!