Today was a bit rough for me. I found out some news last night about a fellow Cyster and it upset me. Then today two more Cystics passed away (neither of which I knew but it is still sad to me).
My Cyster friend…I met her 2 years ago when I joined that dreadful site. We chatted and I looked forward to her blogs. She is very religious and was dead set on not getting a double lung transplant. I found out last night she is starting the evaluation process. She has turned very sick lately. Well, its been on going and I remember her having many bouts in the hospital but her FEV1 was always higher than mine. Now, she is sick, real sick.
I also have a few more friends that are either listed or that are starting the evaluation process. It just seems like all of a sudden lightning struck and now Cystics are falling left and right. It scares me…I admit it.
I worry that I may be next. These are people that DO what they are supposed to do. They take care of themselves, they do their meds, they have rearranged their lives to fit in more treatments and exercise. And yet CF is still winning.
What if that happens to me? What if this time next year I am being evaluated? The thought terrifies me. Especially since I woke up this morning with my phlegmy cough again. I’m not ready to give up. I want to keep going. I want to make it to 35 with these original lungs. But how can you keep the faith when you see fellow Cystics doing what you do only to not win?
I’m not giving up, far from it. But it terrifies me that no matter what we do, we can still loose. Today was just one of those days where it was not easy to deal with.
Tonight I would love nothing more than to crawl up next to someone with strong arms and just lay there, thinking everything will be alright...