It has been an emotionally overwhelming week. I don't know where to begin with you, blog readers. I feel like there is still so much that my ever-growing audience does not know about me, and yet the blog must forage on and share some news that might shock the readers.
I have begun the transplant evaluation process here. Since my lung function dipped so low (FEV1 low of 16%) following the hemoptysis/Pulmonary endometriosis breakthrough bleeding on my birthday, it became apparent that this year is the year for me to get listed.
This is a big turnaround for me. I knew that this debate was coming. Honestly, I thought it was at least one year away. In my mind, I was going to power through the year and make some great new career moves, get evaluated for transplant next summer, decide and see IF I wanted to be on the list (or if that was even further down the line), and yadda yadda.
Instead, here I am.
I have always been a puzzling case of CF. I have had "severe" lung disease for at least, I'd say, 6 years. I had FEV1 in the forties starting in 2003, and dipping into the thirties in 2004-2005 during an exaccerbation and the delayed diagnosis of my pulmonary endometriosis.
I have had FEV1s in the 30s since March of 2008, and in the twenties since last fall. Following IV treatment, I have never gained lung capacity back. Ever. Except for last week (16 to 23%. woot).
My lungs have been in very bad shape, for a very long time. The confusing part is that I lead a very healthy lifestyle and the "rest" of my body is in very good shape. Mostly due to my fear of doctors and what used to be a general distrust for the CF clinic system, along with my belief in putting my whole health, whole body,whole spirit, whole mind first- I avoided hospitalizations at all costs for many years. Whether this took a positive or negative affect on my health can really only be supposed. There are about 1000 blog posts I could write about the spectrum of treatment for CF and where I am on that spectrum.
All of a sudden - it seems to me- I don't have the luxury of deciding my place on the spectrum at all. I need oxygen 24 hours a day, I need airway clearance several times per day, and I need lots and lots of rest just to get by. That being said, the rest of me is the same. I'm still pretty :), I still make bawdy jokes, I still like to drink rum and coke at 4PM on a Friday, I still stay up too late, I'm still bitchy.
I have these overwhelming feelings like, "How can all this be happening, and I'm still me?"
Perhaps that sounds dumb.
I also have moments where I feel like, so what now, do I sit down and write my dramatic letters to old lovers and friends? And who do I call? And what if they don't care? And what am I telling them again?
People react strangely to the news about transplant. Some say, "Well that's good, right?!" and I think dark thoughts like, yeah it's good to have your chest opened, they take a little part of you and put in a little part of somebody else, and hope you live through it after. But how else are people supposed to react?
We are told to be positive. I am trying to be positive. I am mostly feeling positive.
But its words that are the problem. There is no control of the words around this subject. The words, they're flying everywhere.
New Lungs Are Great
You'll Be Fine
It's Like You'll Be Cured
Everyone seems very focused on the good part that is months away.
In between now and then, I have to live through the rest of it.
I also have a chronic complaining problem. I love all of my family and friends and yet every time I talk to someone I feel like I'm complaining about something! I don't want to alienate people because they think I'll complain about them. I'm in some sort of selfish phase (which Cystic Lady, I know, would remind me is just there to keep my alive), where I want everything my way all the time. I want to talk about it when I want to talk about it, shut up about it when I'm done talking, be emotional sometimes and ignore it other times and I want everyone to be a fucking psychic. Is that REALLY TOO MUCH? REALLLY?!! ;)
My sister told me, after her transplant, that several of her personality traits that are less-than-polite, are really just there to give her the strength of will and emotion and spirit to survive CF and transplant.
You have to be one selfish bitch to think you deserve to keep living when you spent you're whole life assuming you were gonna be dieing. So, there it is.
Also, wow these mixes and maxes of medicines really do a number on your brain. And by "your brain," I certainly mean, MY brain. In the last six weeks, here are the meds that can affect my brain, (and by "brain," I really mean, emotional state): Lupron to treat pulmonary endometriosis- completely shuts down my menstrual cycle. "Where did all my estrogen go?" asks my brain (and my boobs); Taking 1/2 of my mood stabilizer because it was contraindicated with one of my oral antibiotics. "Where did all my stability go?' says my brain (and my ankles since the workouts!); Started taking more valium to avoid anxiety at the doctor 3x week. "Where did all my awakeyness go?" says my brain (and my eyes); Started taking prednisose and now tapering off of it. "Where do I put all this energy!!" said my brain, followed by "What the hell is YOUR problem and why does your ass ache?" Prednisone brain is an angry, sore brain; also I am taking another prescribed pill to stimulate my appetite. i don't want to write about it on the internet because it is POTentially confusing to readers. ;) "Where did all my worries go?" and "I think I'll have a third pudding cup!" says be POTentially hungry brain.
My brain is crazy this week. I'm one moody, selfish gal.
PS on a much lighter note, my sister has a great blog tonight about boys and how they are dumb. http://teedablog.blogspot.com/ with guest comments by your own, CG