First, Waiting to get Better, Now Waiting for Fun!

I just wanted to write a quick update because things have been a little busy around here and you know how that gets..

After my belly issues at the beginning of March, I’ve been dealing with infection on and off and try to stay off antibiotics as long as I could. That was until about two weeks ago.

I had my regular CF clinic visit, ended my PFT tests, and my numbers were pretty good. They were pretty much exactly the same as they were last time… Not improved all the way back from everything I lost after my experiment of taking the new drug for CF, but it hadn’t gone down.

So when I came home a couple of hours later and I had a fever of 100.1, thought that said my streak is over.For seven weeks, I had experienced several episodes where my infections are flaring up and I had several days of strong symptoms, but you’re doing extra vest treatments and lots of rest and vitamins, and lots of fluids, I actually made it through without loading antibiotics. My immune system *sometimes* does work!

 

This machine measures how much air I can blow out in 1 second…and a few other variables…that help define my current acute and chronic lung disease.

 

Please Support our Fundraiser for Cystic Fibrosis!

It’s that time of year again! We’re walking to raise funds and awareness at the Cystic Fibrosis Foundation Great Strides event!

This is our fourth year participating in Great Strides! Here are our totals for the previous three years:

2013: $2,575
2014: $2,310
2015: $2,935

The past two years, we had held our own additional fundraiser, Darts for CF, that helped raise our totals, but we aren’t able to do so this spring. So our only fundraising efforts through the Great Strides event!

We hope to raise at least $1000 this year, so I’m reaching out to everyone!

CLICK HERE TO DONATE OR JOIN OUR TEAM!

Great Strides, Darts Tournament, and Health Update

I know that I still have six more years to cover for my “CF Journey,” but life got really crazy this month and I wanted to catch you all up with what’s happening.

Fundraising Update

First, the wonderful news. May was Cystic Fibrosis Awareness Month and we returned to do the annual Great Strides walk on Sunday, May 18. We renamed our team “Toni’s Titans” and generated a souped-up fundraising campaign.

We also planned a dart tournament at a local pub to benefit the CF Foundation, the proceeds which we’d present the next day at the Great Strides walk. We had 22 dart players and over 40 people attend. For an event that Ken put together in less than 3 weeks, it was wildly successful. Local businesses and residents donated prizes that earned additional funds and attracted people to the event. Everyone loves a prize!

Toni’s Titans Team Photo 2014.

My Cystic Fibrosis Journey: January – August 1993

So many times, I’ve made wishes, goals, and even plans, with a huge level of uncertainty around me. For a long time, I didn’t know how to get from point A to point B in a straight line. It was for several reasons:

1. Straight lines only exist on paper.
2. I panicked when unexpected happenings interrupted my flow.
3. I didn’t have enough faith in myself.

As I said in my last post, most of my life was a string of things that happened to me. I never felt that I could control anything. But the secret is that for the things you cannot control from happening, you can control how you view it, and what you do next.

Great Strides 2014 is Here!

Sunday, May 18, we’ll be joining hundreds of other people in the fight to find a cure for Cystic Fibrosis . This Great Strides event is a 2-mile walk along the beach in Madison, CT. Registration begins at 9am, and the walk begins at 10am. Light snacks  and water will be provided, with free entrainment on the bandstand.

 

Our team, Toni’s Titans, stands for strength in not only the Battle, but the War. I’ve been fighting CF for 42 years, and I don’t plan on waving the white flag of surrender any time soon. Of course, we couldn’t do it without the support and generosity of our friends and family, who have given their time, money, and support on every level. We know that it’s not easy when a loved one is sick all the time. I often say that I think it’s easier to be the sick one than to watch someone you care about go through it all.

So if you’re interested in joining us tomorrow, or wish to help contribute to the Cystic Fibrosis Foundation, please visit the Ton’s Titans team web page for more information.Please note that for insurance purposes, each person participating must register.

Thank you for your support, and I can’t wait to share our final Team Tally and pictures from the event!