Friday, August 28, 2009

Rough day in my head...

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. Normally I am like oh whatever CF, suck it! But today, it hit hard. I’m entitled to that day right?

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...


  1. you are SO entitled to this sort of day, but i hate that you have to have them at all! i don't even know what to say about it all except that CF sucks and is scary and, well, it sucks. oh wait, did i say that already?

    i hope your draining day leaves you free for more good ones in the near future, and that you can kick that cough soon!

  2. Not sure if I'm one of the sad Cysters you write about here, but I do know that today is scary and doom and gloom, but tomorrow may not be. One day at a time. One day. At a time.

    Love to you,

  3. You are absolutely entitled to days like today...but remember CF is YOUR disease and not anyone elses. What happens to others has no bearing on what you do for your lungs and what your lungs do for you.

    Keep up the good fight and I'll be thinking of you.


  4. Sorry you had a bad day Amy, but unfortunately we all have those crappy CF "what if" days. It's completely normal to have these days and you're more than entitled to them.

    Keep your head up and know that you are doing everything you can to try to kick CF's butt!! Thinking of you.

  5. Thanks friends...I feel much better today. Sometimes we just need to vent and a good cry to help :) Of course watching a sappy movie (A Walk to Remember) helps get those tears going haha!

    <3 to you all!

  6. Sorry..I know this sucks! I've had the same kind of week with people passing away (including CFers). On my way to a funeral now for one of them!

    Glad you feel a little better after venting!!! Everyone is different, and like Ronnie said, what happens to the others has no bearing on what you do for your lungs and what they do for you!! Just keep up the good work...keep fighting and never give up!

  7. Hiya -

    Glad you are feeling better! But I totally know about having THOSE kind of days. I do know how you feel b/c it's been a rough week over here too.

    Take care of yourself!!! Reading blogs of other cysters and fibros and knowing that they are having the same thoughts keeps me sane.

  8. Awwwwww Ames!!!!!!!! *massive, non-squeezy hug* I don't know what to say, but I def know what it'slike to have ppl with lung disease fall left right and centre all around you, when you're all doing the same thing to survive and get by, and it's still not enough for some:(

    We are long overdue for a proper chat! How's tonight m'dear???

  9. Definitely Entitled!!!

    That news caught me off guard too :(

    Stay Strong Ame!!! Xo

  10. Amy, Unfortunately I can so relate. And then there's the guilt because the stress and fright isn't just my own, but my family's as well. And the absolute worst is the fright my CF is giving to my 14 year old daughter. She isn't quite plugged into the daily saga, but she sees my struggles. And frankly some days it's difficult to keep a smiling face and hide it all. The CF terror just sneaks out sometimes... ya know?

  11. I can relate too. It's a terrible feeling and it's just the way it goes unfortunately. Real sucky. Sorry it hit you.