one is the loneliest number

[65redroses]

at first i felt alone because i didn't know anyone else my age who was sick.

always in isolation in children's hospital.

as i grew older and sicker and had to start making tougher decisions i knew i needed to find others like me.

then i found you. all of you.

i found young women and men with not only cystic fibrosis, but lymes disease, crohn's, diabetes, cancer. Being young and sick grew a little less lonely.

and when my CF got really bad and i needed answers there you were...my CF warriors. you answered my questions, you thought mucus was funny and you wern't afraid to look at pictures of boogers and pic lines.

talana, meg, nicole, kerry, shannon, lauren, james, lois, austin, kat, caroline, becky, margret, emly, lucy...

kaya do you have cf?

and when i needed to start thinking about transplant....there were a few of you right there with me...

on the list, waiting, knowing what it meant to jump at every beep to sigh at every passing ambulance siren...
but not all of us made it...we lost a lot of special ones along the way...waiting....
aaryn, kristen, jenn, mike...
so many others...

and others are waiting now... justin, victoria...margret, lois are you waiting??

and then i had transplant and the few on here who truly could guide me through step by step grew even smaller...
but we celebrated!!! you know how much it means to breathe deeply through somone elses lungs. what it is to shake from the tacrilimus, to get bronchs and to watch our pft's soar sky high. this roller coaster is breathtaking and i'm so glad you have shared it with me....

cheryl, christine, margi, kina, wendy, kate, maria

hey guys? whatever happened to day_byy_day??

but this latest clique...

this smaller circle of people who get it. who know what it is to wake up again breathing through a straw.
who have tasted freedom and skipped and dance only to feel the ragged pull of breathlessness yet again.

this sorority we have where the price of entry is much too high.

there were only 3. johanna, kitty and kina.

i'm sure there are others out there but this little triangle of girls from around the world....the ones i know and love.

there was kitty and she is the only one i know to have received a second lung transplant.
and i miss her every day.

so between the three of them....one recovered...one is stable and has learned to live a difficult life and the last is breathing easy up in heaven........
and now theres me.

i want to get better.

please oh please oh please let this get easier.

this feels so lonely sometimes.

there are so many options yet none at all.

i can't sleep.

it's 4:19 in the morning and i can't sleep.

my parents will be disappointed.

i just can't sleep.

the group of people who understand are getting smaller and smaller and smaller...

and this is not to discount the rest of you....my friends, readers, people who know and love others with CF and other illnesses. i love and value and cherish you all.

i just need someone to ask....

wait.

i'm going about this all wrong.

i don't need someone to as....instead...i'll be the person to ask.

i'll be the person who records this.

so no one else feels as alone in this journey.

I will do this. I will live. And I will be here for others to ask.

i feel a bit better now.