Hello everyone! Happy nearly spring! I figured it’s about time I get off my duff and get you an update on health things. I know several of you have been waiting patiently. Thank you.
Well, the last time I wrote, the medical world was dominating my life. Since then, I have spent time trying to balance that world with regular life.
I got past the infection of February/March. From then, I spent my time concentrating on working in the day and resting in the evenings, so I can keep doing the things I love in life; namely, spend time with family and work at my job. Long term projects (ie: stage managing) had to be put aside. Concentrating on holding my job and keeping healthy doing it was taking almost all my energy. So the next goal was to get stabilized enough to be able to work the Great Plains Theatre Conference. Between persistence and my stubborn attitude, I was able to reach this goal. Work is going wonderfully, family is doing well, and working the conference turned out to be totally awesome.
It's been a while since I posted on the blog, having put my updates on the monthly report lately. So I figured a blog update is due.
In light of a blog entry this time, I am cross posting the December issue of "The Lara Report." A video was made, listed in the newsletter. I hope you all will have the time to view it. Merry Christmas, everyone. Thank you all for a very supportive 2011!
Just a quick update everyone. Not a book this time...
So forward progress. Yep...my tests are down now to 35%. They went down in the last couple of months and are not going back up. This means oxygen when I exercise or do anything of excess energy and when I sleep.
So is this good news? It takes me a step closer for the transplant qualifications. Catch 22 is the progression, as one can imagine. It's not easy getting out of breath going up one flight of steps, or from vacuumming or from doing the laundry. Simple things in my life are dictated now by my CF versus me dictating to CF how I am going to live my life.
The burning question is, "What's taking so long?" A lot of people have been approaching me with, "When are you going to have your transplant?, "Have you had it yet?, "Are you going to get it soon?" Well, my blog update tonight is going to answer these questions....
Many of you have heard me talk about a particular number....it's from a breathing test I do. If you did the test, more than likely, it would be 95-100%. When my test is consistently at 32%, that's when things start "rocking and rolling"....
Today was an interesting day. I ran into a person who knew my sister. My sister's name was Amy. She was three years younger than me, and for the first half of her life, healthier than me. But as this disease is different for everyone, things went awry. My health actually got better and Amy had a major turn for the worse. One bout of pneumonia turned into a seven year, downhill, progressive trend that resulted in a lost battle to CF when she was 18 years old. So yes, I was 21.
Well, it's once again time for an update. Where am I at, how are things going?
I am about to finish one of my antibiotic treatments here at UNMC. Today marks two weeks and I get to go home tomorrow. I can't wait! It will be nice to be home; be with my honey and my kitties. I'll go back to work Monday, and that will be nice too. Gotta see some faces other than hospital workers! (Love you all, no offense!)
So how are my numbers? The test that you all hear about....when I came in, it was 30%. Today I did 41%. This is good news. This means I still hover at essentially the same place I have for the last year and a half. Many of you know, when I consistently hover at 32% is about the time I would get evaluated for a transplant. My "hover number" has been 35% the last few months. That number a year and a half ago was 38%. So what this shows is still continued, steady, slow decline. But the good news is, it's not a fast decline.
I just put in a facebook entry that talks about how I am exhausted, yet bored. And I decided it was a good title for this entry. I am finally making a new entry, after having worked on three projects. I directed An Enemy of the People for the Brigit Saint Brigit Theatre. Then I Stage Managed Aksarben (Nebraska-ites understand this one). And today, I finished my duties in Stage Managing for Opera Omaha. The latter (sp?) two were short gigs, but still no less intense than the long term projects.
So here I am now, no weekend left on this Sunday evening; exhausted, projects done, chores done for today, ready to fall asleep; and yet feeling odd to just sit for a few minutes.