Blogs

My Sister and the Truth

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.

Happy New Year!

Hello everyone,

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.

Exhausted, but bored

Hello everyone,

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.

In memory of a hero

Hello everyone,

Well, I've been out of the hospital for three weeks. So much has happened since then, it feels a lot longer. Trust me, that doesn't happen very often. Since I have been out, I have started rehearsals for the next project I am working on, and then had to break up that routine for a vacation we had planned. This vacation was very important. We have been planning it for three years. It was part of my personal celebration in turning 40 this year.

And the verdict is...

So you are probably asking, "Well, what the docs say????"

:)

First, I remained at 117 pounds. Guess I'll have to work harder to hit that 118 mark.

Tests - well, they were better. By 2%; For those of you following my numbers, I did 41%. When I went in, it was 35%.

So what's that mean? Well, they said I could come home. Freedom!!!!   :)

But, I have to stay on my IV meds for another week. Since, my tests still improved, my doc wants me to see if I can bring that number up just a little bit more. But being cooped up won't necessarily help with everything else being in tip top shape. Thank goodness. I was not in the mood to maybe indulge another week in there.

So, still on meds for seven more days. But at least I am home.

Catch 22

Hello everyone,

Reaching your dreams.

A lot of people don't really know how serious CF is. Most CF'ers have a thing that is a blessing and a curse at the same time. We look normal. Thank goodness, what a wonderful thing, to have a disease and look normal!

The curse is that fact that it hides inside and most don't understand how serious it is. I often tell people, "Well, if you could see a picture of my lungs."

I remember when I was young, my dad asked me, "What do you want to be when you grow up?" I said, "A streetcop." He said, "Lara, you can't. You'll never keep up."

Every CF'er has been told, (I think), that there is something they cannot do in life, because of this disease. My goals changed, so I don't know if I could have become a street cop or not....I do know this, if I had, I might have a desk job by now at the station instead of being on the street, just because, well...I am a realist. I know my lungs couldn't do the street thing now.

Stagnant Woes

Hello everyone,

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.

Can denial be a good thing?

Hello friends,

Well, there isn't really a whole lot new on the healthfront since I wrote last. I can say things have been calm, which of course is a good thing. People ask me how I am feeling, and the answer has become "holding steady." I suppose that's how I feel not just physically, but mentally too.

It's flu season, approaching winter and the cold season; and for the first time, that weighs on me if I think about it. Consequently, it makes me thankful for every day I go by without a cold or an infection. I make consious efforts to stay away from anyone who is sick. ....I just heard on 60 minutes tonight that the H1N1 can travel through the air, easily, ten feet. ... Doesn't fit my "three foot rule."

Back to the beach, the real beach

Hello friends,

This entry is going to be shorter. I am on my way out the door, on my way to a REAL vacation; we are going to Michigan today. Our first vacation in two years. A vacation that is not spent at the hospital; and with all the traveling I get to do for work, this will be my first trip in two years that is in summer, not winter. Oh, so, so many things to look forward to; including spending time on the beaches of Lake Michigan! And my cousin is getting married! Woo-hoo!

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