Skip to main content

Great Strides Walk 2013

Today, my family and I went to the Austin Great Strides Walk for Cystic Fibrosis. We've participated in these walks for as long as I can remember. I've spoken at several of the events (some of my more recent speeches are actually on YouTube courtesy of my dad), and we always strive to raise as much money as possible for the CF Foundation. Although we didn't put together a huge team like we have in previous years, I still loved taking part in the walk. The strange thing is, I was one of the older patients with CF in attendance. Instead of my age adults,  I saw all these cute kids, playing with their brothers and sisters and throwing around complementary frisbees (with their leis around their necks, so others knew who had CF). I understand why pictures of children are always used to encourage outside donations. No child should EVER have to go through what I've gone through with CF. One of the precious girls who spoke was only 6 years old and had clearly been in the hospital a few times based on what she said (She actually said she enjoyed the hospital, besides getting a PICC line placed. I don't think I ever said that!) At my age, people are having a few more health issues, and it's not quite as moving to see a 20 year old succeeding with CF as it is to see an adorable 6 year old being forced to grow up way too fast because of a life-altering disease. Another part of the walk this year was to talk about who people were walking for.  I almost teared up when several people were asked to share. The care from all sorts of friends and family members was so tangible, even outdoors in an open space. I really don't know how any CFer makes it without a fantastic love and support system. CF isn't a disease a person can handle well on his or her own. You need a group of people who will encourage you, care for you (even when you don't want to be taken care of), challenge you, and cherish you. I saw this kind of community all around me at the walk today, and it made me so thankful for such a tight-knit, courageous group of people I call my CF brothers and sisters. 

Thank you to everyone who came out to the walk, donated money, and/or organized any part of the day today! You reminded me why we will not give up searching for a cure. God bless you guys!

Comments

Popular posts from this blog

CF Walk Letter 2018

Dear friends and family,
I hope this letter finds you doing well! My life looks pretty different this year from last year. In May, I graduated with my master’s in communication sciences and disorders. I started working as a speech-language pathologist in June for a company called SpeechCare, and in July, Eric and I got married. That was a very busy couple months! I love my job; I work mainly with adults with intellectual and/or social disabilities to help improve their communication skills. My clients bring me so much joy! I love being able to help them communicate better with others. Eric and I are also loving being married. Living with Cystic Fibrosis has taught us to never take the time we’re given for granted, and we are making sure we soak up all the moments we’re given and go on plenty of fun adventures. 
My health has been a bit of a struggle in the past few years. I had a round of IV antibiotics in May and then again in September and January. I will be starting IVs within the ne…

The day that was yesterday

Wow. What a day yesterday was. Here’s what happened:
At around 4:45, my hand became numb and tingly. Because I’m a knowledgeable SLP, my first thought was “oh my gosh I’m having a stroke”. Although the numbness was my first (and only) symptom, it was so bizarre how my hand just all of a sudden lost feeling in it. About 5-7 minutes into the numbness sensation, it started traveling up my arm and reached about midway up my forearm. Due to my history of a PE and being on Amicar (a blood clotter) right now because of a lung bleed, pretty much the only option was to go to the ER. I called CF clinic, and they confirmed that I should head over there. The ER is the most disgusting place, especially in the middle of cold and flu season. They also apparently have never heard of CF protocol because I had to demand to be put back in a room immediately and for everyone who came in my room to be gowned, masked, and gloved. From the beginning to the end of the 5 hour ER stay, it was pretty disastrous.…

Thankful in the hard times

With a disease like cystic fibrosis, it can be easy to get lost in all the pain, fear, and frustrations and lose sight of what we have to be thankful for. This year has been rough. I started the year with a blood clot, quickly followed by increasing worry about the state of health care in America, all while losing a significant amount of lung function and dealing with way too many lung bleeds. However, no matter how hard the year, I believe it’s always important to reflect on the many blessings we have been given. It’s too easy to wallow in self-pity and pain otherwise. So this post is dedicated to just that—thanking God for all He has given me. 
I’m thankful for... My new husband ❤️. As I’ve said before, many CFers wonder if they will ever find someone who will choose to love them day in and day out with all the stresses that come with cystic fibrosis. Being the spouse of someone with CF is not for the weak or faint of heart. My husband has taken a crash course in medical terms, health…