Learning To Live

Today, on Facebook I posted, "I want to delete my social media apps for the entire month of October, or until I'm feeling better, but I know I'll never be able to do it.  I rely on photos of friends' kiddos and food and sewing projects to keep my spirits up, and I worry about my CF and Transplant friends, and I want to stay in touch with everyone.  I want to encourage my friends who are also going through tough things and just be there to support anyone who needs a supportive ear.  So I won't delete my social media, but I won't be monitoring it as closely.  I'll be limiting my time spent scrolling, and I'll avoid all the political articles.  Go to my blog for the longer explanation of how I'm doing."  Yesterday was “Mean Girls” Day, October 3 rd , and George suggested we watch it.   I know he wanted to cheer me up and help, but I got sucked into the internet – again – and ended up binging on articles about PTSD.   I read about PTSD and chronic ...

Am I a horrible person because I don’t believe that “my donor’s worst day was my best day?”   One, it doesn’t make sense – not literally.   My donor was brain dead several days before I was transplanted.   I assume that was the worst day for his family and loved ones.   And while I feel very blessed to have new lungs, beyond grateful to my donor who decided to save the lives of strangers he would never meet, I wouldn’t say my transplant date is “the best day of my life.”   Life-changing, yes.   I received the gift of life.   And it’s incredible, amazing, and beyond words.   But all I remember from that day are going to surgery, and a little bit when they woke me in the ICU to prove to my family I was still there.   They woke me long enough for me to open my eyes a little and squeeze hands.   And honestly, is it the best day of my family’s lives?   They sat around, waiting to hear if I made it through surgery.   If I was expect...

"Excuse me Paul -- I'm having a problem with this This credo -- My T-cells are low -- I regret that news, okay? Alright But CARLA - How do you feel today? What do you mean? How do you feel today? Okay Is that all?   BEST I'VE FELT ALL YEAR! Then why choose fear? I'm a CFer! Fear's my life! Look - I find some of what you teach suspect Because I'm used to relying on intellect But I try to open up to what I don't know Because reason says I should have died Three years ago No other road No other way No day but today" - Adapted from "Life Support" from Rent <3  Today I felt GREAT.  Despite not sleeping much (I'm on an antibiotic for a sinus infection that keeps me awake... ALL. DAMN. NIGHT), I felt AMAZING.  What not throwing up can do for you!!! Yesterday, after my asshole doc told me he wouldn't prescribe me the medication I logically should try, I called my PCP's office and got an appointment for today.  I went in ready to fi...

I feeeeeeeeel like I'm FLYYYYYYYYYYING! One day vomit-free and I feel like I'm going to conquer the damn world! I WILL get better! I will BE better! My life can re-start post cancer (maybe... we still need to see what today's blood work showed)! I want to  dance and sing and jump and QUILT! I want to organize the house! I want to quilt and sew and knit!  I want to write about my experiences! I want to see the world! ...but for today, I'm going to continue teaching myself to crochet (basically the only craft I've ever failed and given up on), and make sure my body keeps getting better!!! Short-ish note on why I was so sick: Levothyroxine.  The thyroid hormone you have to take forever once they remove your thyroid.  I am very clearly allergic to something in it.  It's unlikely that it's the levothyroxine itself.  It's most likely the blue dye or additives.  This is why I've felt like complete GARBAGE since August. S...

I hate this.  I'm sitting in the library watching the seconds tick away.  I'm supposed to be writing a chapter for my book about my ex-husband.  Groan. I am writing the chapter that introduces him as a person - before things were terrible.  Before he left.  When I was really happy.  And that's some of my problem - I was never truly UN-happy.  At least I didn't think I was unhappy.  Maybe I was too sick to pay attention to my marriage, but I didn't think it was so bad until Dan announced he was leaving me.  In retrospect, of course, there were things that were terrible, and I'm doing much better now.  I think sometimes I'm still stunned that all this happened, that this is my life.  Today I ran up the stairs and thought, "Shit.  I have different lungs in me."  Sometimes, I almost forget.  Today my writing coach said to me, "W ell, cripes. You just had your lungs torn out. Then your heart was torn out as w...

If you have not seen the movie "Five Feet Apart," please quit reading.  It's a movie worth seeing - worth getting a feel for what having CF is like.  So, stop now.  Go see the movie, and come back to read what I thought.  I want to encourage people to see this movie - especially if you want a small glimpse into my world.  Is it my exact story? No.  Is it close? Not really.  But it IS a CF story, just not mine.  First, I want to say I really liked the movie.  I thought it did a descent job of portraying a young life (well, 3 young lives) with CF. Are there inaccuracies? Of course, it's Hollywood.  Is the story a little cheesy? Yes.  But despite a few negatives, I overall really enjoyed the movie.  I also cried through about 85 or 90% of the movie.  The parts where I wasn't crying made me laugh or cringe at inaccuracies, and sometimes it was all three.  My biggest pet peeve was how the hospital stay was depicted as ...