Friday, June 20, 2008

Why I'm so shocked my lung function was up

I live in the Willamette Valley, which is beautiful, green, and temperate almost all year long. But the valley also has it's own little demon that shows its face every year, in late Spring, grass pollen. We grow somewhere around 90% of the grass seed for the WORLD here... and when you have a grass allergy and lung disease, that can be quite the challenge.
My allergies are not as severe as they were when I was younger, but it's always a challenge. My local paper did an article today that out lies how our "pollen soup" could effect the lung function of the elite athletes coming to town for the Olympic Trials. Imagine what that could do to little old me!

So lung function being up... a blessing indeed!

Monday, June 16, 2008

Good Clinic

Went to CF clinic today. To be honest, I wasn't sure what to expect. Up until last week, I was pretty sure that I may end up in the hospital. The last few days, despite increasing severity of allergy symptoms, I thought maybe I'd avoid the hospital.


My lung function went up. It inched up, slightly, so that my total capacity is 52% of what would be expected for my weight and height, while the amount of air I can force out in the first second, the number my clinic is most interested in, was at 44%, also a gain from last time. My weight stayed stable... a good thing and a bad thing. At least I didn't go down, but I really need to put on weight. More working and struggling with that.

Thank you for your prayers. I jump in lung function in the peak of allergy season is a huge blessing.

Saturday, June 14, 2008

Leaving on a Jet Plane

This is me and my sister Heidi. As I type this,she is bound for Kenya, leaving for a month on a missions trip. Although I rarely see her, being that she lived in Kentucky, I'll miss being able to talk with her several times a week. I pray for her safety and that she will be able to do good work over there :)

What Hurts the Most...

I really, really hate this disease sometimes.

Sure, it robs me of my future, my breath, the time out of my day to do treatments, and makes far more decisions for me than I do the older I get.

But that is not what my true passionate hatred is reserved for.

That comes from when I watch people with CF, especially those that are significantly younger than me. Today Haley Palmer passed away from complications of CF at only 12. A year ago she was going on vacation, playing soccer, and living life to its fullest, the way any CF patient learns to live by virtue of their illness. In a short time her lung function tanked, rose again, then almost inexplicably tanked again. Usually lung function decline does not happen that fast in CF, but it doesn't matter... the killer that lives within me and thousands of others took another brave, and all too young fighter. As I spent the afternoon, reading journal entries about her life, she was flying up with the angels to God.

I hate this disease with the heat of a thousand suns tonight. It turns us into fighters, makes us love life, appreciate moments, be strong... but then it also always takes in the end. I'm okay with my fate that I'll probably die with CF... but Haley? She didn't even get the chance to go to High School, get a transplant, or reach the age of adulthood. I can't say that she didn't get the chance to grow up... CF forces kids to grow up in so many ways... yet we still are able to live, laugh, love, and have pure joy, something that many adults lose with the passing of the years.

I don't regret having CF. The lessons it's taught me are numerous. But even knowing that, I still am hurting tonight.

Friday, June 6, 2008

Lazy Days but Relaxion Hard to Find

I know it's been awhile since I've updated. I apologize... in part, it's not because that I've been too busy, or too tired, or had nothing to say... I just haven't. It's hard to explain. In many ways I feel like I'm stuck in Groundhog Day. Each day with ever so slight changes, but the script plays out with the same arch's day in and day out.

I wake up in the "morning", rather it be morning at 11:30 am or 2 pm. I drag myself from bed, usually try to motivate myself to find food and do my meds. Some days I succeed, others I fail. If I have something to do that day, I head out in the world. Sometimes those days are amazing and great and happy. Others I don't feel good and they are painful and dreadful. I never know what I'll wake up to.

By 6pm I've usually ate, done meds, and possibly gone out for the day... or I've spent the day watching TV in bed. I start to think what I'll do for dinner for Matt and I, possibly get up and start cooking, or other days resign myself to something quickly thrown together as that is all the energy I can muster.

Evenings is when I'm usually at my best. I watch TV with Matt, I become more animated, more energized. I've always said I'm at my best after 7pm. I'll take my bath, do my meds, and feel good and happy for a few hours.

Then into the wee hours of the morning 1,2, 3 A.M., Matt and I curl up in bed, read, and go to sleep to start another day.

What's special about this script? It's full of my trying to accept me. Figuring out what I am still capable of doing. Pushing myself to do what I can. But struggling deeply to find acceptance when I can't do something. That's been the story of my life for the last year or so. I've always been so capable despite my health. I was able to exceed so many expectations of me. Now, I can't. Some days picking up clutter in the house is enough to wipe my energy for the day. And that is so hard for me to take. I don't like it, I don't want to accept it, but I really don't have a choice. I lash out at those that help me, I've never liked help in the first place, but now the fact that I need it hurts me deeply because it makes me realize how much I've slowly lost. It's said that you don't miss things until they are gone. Slowly, my physical abilities have wained... and I often question when things disappeared. Because they left me so slowly, I sometimes don't realize how much I can't do until I try and fail.

Given all that, I'm still trying and fighting. Really there is no choice. I'm working on accepting what I have... valuing it because things could be worse. I'll forever be grateful for how long my CF held off. What I was able to do that so many others were unable to do. I'll fight jealousy at those who still can operate like a normal person.

Quick Prayers and Blessings:

Nate, Tricia, and Gwyneth are home on the Outer Banks of North Carolina. Their story still amazes me. All the blessings, the grace of God, and strength in the darkest times.

My Grandmother is going in for gall bladder and hernia repair surgery on Monday. I'll be taking care of her for the most part. While I know that it should go fine, I'm naturally worried. She's 82, so any surgery is not taken lightly. Prayers are needed for her. I will try to be as nurturing as I can, something that does not always come easily to me.

Lastly, I leave you with a video from my beautiful Eva. Watch it. At 8 minutes, it is long, but so powerful. If you want an idea of what CF is like, then watch. Eva is living beautifully, thanks to the gift of life that she received last Fall.