Tuesday, July 31, 2012

Waiting: Day 55

I am so relieved that the pager has not beeped yet. I'm still not ready. I finally put some real consideration and effort into packing my bag for the hospital, but as of today, I will be uninsured September 1 and I need more time to come up with a solution.

I have followed every bit of counsel I have been given regarding application to additional programs, but a dying girl with mountains of integrity still struggles to get approval for government assistance. I have an attorney who is confident in my case, but I have been told that best case scenario will be a 4 month wait for answers...and 4 months are way past September 1.

The past week has been a chance for me to resurrect the tough professional and play advocate for myself, but it's exhausting! Between naps, I'm adopting an "abundance" perspective and looking forward to pieces falling in place over the next few weeks. Things will totally fall into place...right?

Sunday, July 15, 2012

Waiting: Day 39

I will come right out and admit it, I have been intentionally avoiding the blog. I felt crazy pressure to be accountable to the expectations of others (expectations both real, and imagined) and I wasn't feeling up to the task. The first 30 days were tough. I felt hopeless and helpless. Most of my thoughts and words were downers. I didn't know how I was feeling and the thought of answering that question for someone else seemed an impossible task. But time brings clarity, and for me it brought hope as well. So, with some gentle nudging (mom), I'm going to give this blogging thing another go. I have a lot to cover....some serious, some silly, some A-MA-ZING. But today I'll just toss out a brief update.

?How am I feeling physically?
Oddly, a tough question to answer. I guess I feel like someone who needs a new heart. I'm tired and nauseous and dizzy and can't breathe...and that's a good day. I am operating from that new normal and so when someone asks how I'm feeling, and I say "Good" or "Great" or "Fine", well, that is what I mean.
If I've gained 5+ lbs in 24 hours from water retention, if the pain in my chest is distracting or limiting, if my resting heart rate is 120+/bpm, well those are my bad days.

?How am I feeling emotionally?
Much better! Initially I was so overcome with fear that I had a hard time identifying the hope and blessing of my circumstances. Time and research and some key conversations have helped me carve out a much more hopeful perspective and I might almost be ready to do this thing.

?When can I expect a transplant?
My doctors are fantastic about providing me information and answering every question except this one. The shortest wait has been 8 days and the longest has been 5 years. There is some urgency in my case for things to happen in year one, so that is the timeline I am hoping for. (But if I'm being honest, I'd like to be transplanted, recovered, and back to work by the end of the year. Overachiever you know.)

?How do I pass my time?
I've learned that when you're really sick, time passes just fine without too much effort. I sleep a lot, maybe enough to rival my newest nephew. I read a lot. I have watched a lot of Netflix (recommendations welcome!). I completed a University Independent Study course, and got an A! I visit friends and family when I can. I have clinic appointments every 7-10 days. I drive to the pharmacy once a week. I have been down over a year now, and I honestly can not remember being bored for one moment. I guess I have been lucky.

I also want to mention that I feel loved and supported by so many. I appreciate the cards and notes and prayers in my behalf. Thank you to those who ask my family about me, it is appreciated by all of us.