So CF has always been put on the back burner for me. Ive always been extremely healthy. I only go in the hospital for tune ups about once every 4-5 years. My weight is fine (a little too fine if you ask me...could be lower) and my lungs great...FEV1's in the 100's.
But lately I havent been feeling good...lots of lung pains, coughing, shortness of breath. Ive been put on cipro and tobi twice this year...but on thursday when i have my doc app im almost positive my FEV's will still be in the hundreds...or at least in the high 90's.
I hate when I dont feel good. When my lungs feel like they are tearing with every breath. But it happens so rarely that when it does I complain...and im whiny...and im pathetic.
I ask myself all the time, how is it you are complaining when about these tiny problems when there are other cfers (my sisters included in this) that would kill for lung functions as amazing as mine, would kill for my extra weight...are dying to get it.
I know i should be so grateful that Im as healthy as I am...and i am grateful...i guess its just confusing for me. I feel so normal so much of the time...that when cf comes a knocking i lose it...Im reminded every day by the pills and the treatments that I still have cf...and yet I feel like most of the time I dont. especially since when I dont feel good the doctors dont take the fact tha ti dont feel good seriously b.c my lung functions are so high and my weight is good...what do I have to be 100 lbs and almost dying to get treated?!?
I found this poem on some website by a cyster...it seems to fit perfectly for me
Standing in the crossroads
Amidst two paths of life
The life she was given
And the life she wishes she could have
She looks so �normal� to everyone
Yet looks can be deceiving
The CF lurks like a shadow across a wall
Always following
She can�t figure out where she belongs
Too sick to be healthy
Yet too healthy to be sick
What some might call a blessing
She calls her everlasting burden
One path leads her to her bond with her CF family
The other to her dream of acting normal and denouncing her disease
She doesn�t know which way to go
The CF is a part of her
It makes her who she is
Even within the depths of her mild case
She knows she is the black sheep
And doesn�t know which path to take
Her fear of being the sole survivor of her terrible disease
Pushes her toward taking the �healthy� path
But to deny who she is and all she has become because of her CF
Pulls her back into reality
She is standing in the crossroads
Amidst the two paths of her life
She realizes she is stuck between both worlds
As an outcast
Neither fitting one or the other
Her body belongs to one path
Her spirit the other
She realizes she will never really know which path is right for her
Her heart only tells her one thing
Her spirit will last much longer than her body ever could.
Don't stress about it Amara. You have the right to be upset when you get sick. CF is so different for everyone. Everyone has there own set of problems. The doctors also should treat you as soon as they see a drop in PFT's. Good numbers or not if they are down they should be treated. Use every healthy min you have to love life so the times that get you down are quit as hard as they could be. My PFT's are in the high 40's sometimes 51 or 52% but even for me when I'm at the peak of my good health I feel guilty for my friends who are suffering so much more then I am. I think that just proves how much we love those around us. My sister has pretty decent lungs but has horrible intestinal problems and I hate that I don't have any intestinal problems and besides my enzymes I don't need anything else. It's just not fair others have to suffer more. You're a strong girl, keep your chin up we're all here for you (:
ReplyDeletethanks brianne!! yeah i hate seeing both my sister struggling way more than i do...but i am greatful to be so healthy, it has provided me with many more oppurtunities to live my life =)
ReplyDelete