As I sit here doing a breathing treatment, which includes the vest along with DuoNeb, Budesonide and Pulmozyme, I think how stupid all of this is. I know it’s what I have to do but the vest makes it so hard to breathe when I already don’t feel like I can get enough air in. Let me rewind a minute…I called my doc for a prednisone burst/taper for my severe tightness and wheezing. I finished my taper of prednisone yesterday. I’m not feeling better so I called back and asked for antibiotics. I started oral Bactrim and Levaquin yesterday. I have a CF clinic appointment on Thursday so we shall see how I am then.
With all that said…I am not happy with my body, mainly my lungs, at the moment. I have been hooked up to my oxygen most often which means a lot of down time to sit. I don’t feel like I can get enough air in which then sends me into a panic. It is so hard to concentrate on your breathing and slow it down when you can’t catch your breath. This probably makes no sense to non CFers but it’s my reality. I showered today, something people take for granted but I have to do it in stages. I have to shower slowly, then take a break when I get out to dry off, then take another break to get dressed, then comes doing of the hair. Let’s just say it is a workout regardless of how I’m feeling but much worse when I feel bad and can’t catch my breath.
We went to Walmart today and I got out of breath just walking in. I almost turned around and went back to the car but I took a minute and controlled my breathing. Then we had to walk the store and that was a whole different story. I made it but came home straight to my oxygen. I’m not posting this as a “feel sorry” for me thing but it’s just hard to portray my reality without posting it this way. People can’t see being out of breath unless I’m doubled over or on my oxygen, even then it’s hard to understand. Anyway, that’s all I have for tonight. I’ll update after my appointment on Thursday.
Until next time…