It's been about eight months since I have written; and as I am sitting here in the hospital doing nothing but wasting brain cells in front of the television, I figure I have no excuse to not get an entry done. I know once this is done, my campaign coordinator, Bridget, will be happy too. :)
Writing - or getting in the mood to write - has been a task. I haven't had anything positive to share, really....nothing negative either - just stagnant news...but Bridget says, "Then share that. People want to know." So in fear of pulling down some pride and always self-monitoring my words to sound positive, I guess I won't edit myself quite as much this time and just say how I feel.
And being in the hospital is a "dangerous" time to do that, because one can feel extra pessimistic in this place. So anyway...I have been living my life, the way I want to live it. Maybe that's a good thing, maybe it's not. I've done a lot of theatre in the last few months; one of the greatest loves in my life. But it hasn't been easy. Anyone in theatre knows it's an unforgiving profession. Schedules and deadlines are a must in this world, rehearsals happen and shows happen whether you feel up to it or not, and you have many you let down if you don't do your part. However, strike me dead if CF is going to interfere with me doing a quality job in the theatre!!!!!!!!!!!!!!!
So, I worked some wonderful projects, back to back, and loved every second of it. But it was exhausting. I caught two colds. The first took me two months to get rid of. And no sooner did I get rid of it, but caught another one. I've had a lot of weightloss. And resorted to doing my t-tube feedings seven nights a week to gain the weight back. Last week, I took, one week off from doing that, knowing I would do it everynight here in the hospital. And in that one week, I lost five pounds...most of what I spent weeks in gaining back. It's one of those reality moments when I realized all of the calorie intake is being spent fighting infection; there's no calories left to maintain the weight.
The lungs continue to bounce back and forth; everyone wants to know when I am going to get the transplant. But their guess is as good as mine. But the docs say, "Don't rush it, Lara." I know they are right. But when I live a life of new projects, all having their own deadlines, coming to an end....well, someone recently told me that my subconsious sees the transplant like another project; and that having it incomplete is probably what bugs me most. Interesting thought. And they are probably right.
I've also been hit with more expenses this year. This is a very, very expensive disease. The amount of time spent on medical paperwork is ridiculous. Out of pocket expenses, despite having insurance, is ridiculous. Affording this disease is worrisome. I am thankful for my campaign. People have been so generous, donating over and over...and with that, we have reached 60% of the goal so far. That's been amazing!!!
So, I guess that's my update for now. This feels random. This feels pessimistic. This feels unorganized. But it's honest.
Long story short....my health is stagnant. Not any better (of course, it never will be), but not any worse than a year ago. Just stagant.