Tag Archives: Cystic Fibrosis

Lost Lake Run Series: Looking Back and Looking Forward

I did indeed finish the Lost Lake Run back on August 23, 2014 as planned. But my finish was the only thing that happened as expected. In short, I was undertrained and overconfident. I floated for a couple of years on a large running base, meaning I could just hop of the couch and run a race. I thought I was still there last summer, but that was true only in my mind. My body didn’t follow suit, most likely due to the episode of pregnancy/childbirth/nursing that happened in between. (Duh, right?)

Anyway, I ran (mostly) the 16-mile point-to-point race, and it was beautiful. Just as everyone had said, it was 1/3 up through dense evergreen forest, 1/3 across a high ridge line, and 1/3 back down muddy single-track. The high points were pretty socked in, so it wasn’t much for views that day. I struggled mostly on the downhill portion. My legs were done at about 10 miles and pretty pissed about the pounding I was asking of them on the descent. After the finish I tried standing in line for a beer at the finish line festivities thinking that would help, but ended up just lying on my back in the gravel instead, which was probably more helpful.

I'm just pretending to run because people are looking.
I’m just pretending to run because people are looking.

On top of that, I didn’t reach my fundraising goal for Cystic Fibrosis. AND I didn’t ever run into Sabrina Smith-Walker, who I had interviewed for my Lost Lake Series, and who, it turns out, is the daughter-in-law of Alaska’s new Governor, Bill Walker. Who knew!

Overall, Lost Lake Run 2014 was a pretty big disappointment. The good news is, the disappointment is completely my fault. Wait, what? That’s good news? Yes, it is. It’s good news, because it means that I am fully in control of doing things different this year, and ensuring a great Lost Lake 2015, or at least maximizing my chances. Training? I’ll actually do some this year. Fundraising? I can put a whole heck of a lot more effort into that. Meeting up with people? Planning and communication go a long way.

So, I’ll just call 2014 Lost Lake BETA. Look out for the updated version, rolling out in the near future!

Didn't want to smile, but didn't want to not smile even more, so I just ended up with this.
Didn’t want to smile, but didn’t want to not smile even more, so I just ended up with this.
Advertisements

Lost Lake Series: Surviving, Living, and Thriving with CF

Lost Lake Banner

When I decided to help fundraise for Cystic Fibrosis research through the Lost Lake Run, it was important to me to match some faces with the cause.  It’s one thing to raise money for a virtual cause, but quite a different experience to raise money for real people with lives, families, struggles, and goals.  One name that kept popping up in the Alaska CF sphere through my research was Sabrina Smith Walker, a local Anchorage runner who is both living with CF and active in the cause for spreading awareness as well as fundraising.  I asked her a few questions so she could tell her story about living with CF.

Donations to my Lost Lake Fundraiser are accepted here.

Donations to Sabrina’s Lost Lake Fundraiser are accepted here.

Vote to put Sabrina on the cover of Runner’s World magazine here!

 

Sabrina Smith Walker -  Cover model in the making!
Sabrina Smith Walker –
Cover model in the making!

How old were you when you were diagnosed? 

I was 4 years old when I was diagnosed, but I was born with Cystic Fibrosis. 

What was it like to grow up with CF? 

I was young when I was diagnosed with CF so I really didn’t know any different. I have memories of Dr’s visits. I remember my first hospitalization and trying to run away from the Dr. when he was trying to give me my first IV. I had an IV infiltrate during my first hospitalization and it left a scar on my left hand that I still have today. I have to take daily enzymes (5 with meals and 4 with snacks) to help me digest my food. When learning to swallow pills my parents would empty the pill contents into apple sauce and I would eat the apple sauce. 

I really didn’t know any different and I didn’t understand that I was following routines that were not normal to others until I got older. In elementary school, I would go to the nurse every day to do my nebulizers and receive postural drainage (a form of airway clearance).

Did you feel like you were different than other kids, or just a normal kid with some extra things to deal with from day to day? 

I didn’t understand I was different until I was older and realized that not everyone missed weeks of school for hospitalizations and not everyone took pills when they ate. 

In middle school I felt ashamed and embarrassed because it made me different, but I still ran x-country running and track and played volleyball. 

In high school I never mentioned my CF because I didn’t want to be seen as someone with limitations, I ran x-country and track. I could run a 6:05 mile in high school! 

I never felt normal because I was going to the Dr fairly often and I had to make room for all of my nebulizer treatments and airway clearance which took 2-3 hours every day. On top of it I wanted to hang out with friends and I competed in sports. I never made excuses for being tired and I really wanted to lead a “normal” life like all of my friends. 

397620_687545935913_410252027_n

What are your interests now, and does CF create any limitations or opportunities for you?

As an adult with CF, I have learned a lot about myself as a person. I run and work out to stay healthy, I am accountable for my health. I have to be compliant with my medicines. This is my life and I am responsible for my health. 

I enjoy reading, hiking, traveling, I enjoy every moment with my husband and our two miniature dachshunds, I also cherish my friends and family. We have also been enjoying more bike rides because we bought a little trailer that our dachshunds can sit in and we tow them behind us!

This year I would like to learn how to ski.  

I would like to say that I would never let CF get in the way of my dreams or aspirations. I don’t ever want to make excuses for myself and say that I can’t do something because of CF. I can’t help the Dr’s appointments or the hospitalizations, but I can try my hardest to keep the hospitalization from happening. 

I went to college in Denver and received my bachelors in Elementary Education. I decided not to pursue that career because it was very hard to be around little kids who are sick all the time. I was always having lung infections and my last hospitalization was in 2011 when I was student teaching. 

How has running affected different aspects of your life and your management of CF?

Running is what keeps me alive! There is no better form of airway clearance for me. It gets the mucus moving and I can clear it out of my lungs. If I go for a 3 or 4 day break of no running or some form of exercise I can feel the difference in my lungs. The mucus builds up and it’s hard to breathe. I definitely huff and puff and cough junk up every time I run. 

It can be hard to find time to run because I work a full time job. The longer the race the more time is needed to train. I like to sign up for races because it gives me a goal to work towards and it holds me accountable for training. But I believe without running I would not be as healthy as I am so I make time to fit it in my schedule. 

How would you rate community awareness of CF, and how would increased awareness impact you? 

I would say that community awareness is so-so in Alaska. There are walks, garage sales, Shoot for the Cure, Lost Lake and probably other ways that bring the community together in Alaska to benefit Cystic Fibrosis. Those that personally know someone with Cystic Fibrosis are more inclined to participate in a CF related event. But if you asked most people who are running Lost Lake, they may not actually know what CF is and how much it affects a person who has it. 

More awareness could bring more fundraising opportunities to the table. The more fundraising and awareness that is available the closer we get to a cure. New and innovative medicines are made possible through donations.

What else would you like people to know about you and/or CF? 

I am 28 years old, I have CF and I am also a cancer survivor. I have been in remission from Non-Hodgkins Lymphoma for almost 9 years! I went through 4 months of CHOP-R chemotherapy and 1 month of radiation! 

I am grateful for each and every day that I am here on this earth!

A big thanks to Sabrina for sharing her story!  I’m so excited to be running Lost Lake next month in beautiful Seward, Alaska, and honored to be contributing to this worthy cause.  The outlook and quality of life for those living with CF is better every year thanks to increased awareness and fundraising efforts.  Please consider donating today!

Donations to my Lost Lake Fundraiser are accepted here.

Donations to Sabrina’s Lost Lake Fundraiser are accepted here.

Vote to put Sabrina on the cover of Runner’s World magazine here!

Lost Lake Run Series: What is Cystic Fibrosis?

Please donate to fund cystic fibrosis research! lostlaketrail-940x350

I’m in the midst of training for the Lost Lake Breath of Life Run in Seward, AK on August 23.  I was originally interested in running this trail race because of the amazing views I’d heard about, but as I learned more about the race, I discovered a much greater purpose.  The 16-mile race is held to raise funds for the Cystic Fibrosis Foundation.  While neither I nor anyone very close to me is living with cystic fibrosis, not everyone can say that.  According to the CFF website, about 30,000 in the United States are living with CF.

top_CFFlogo

Cystic fibrosis is a genetic disorder in which the body creates an abnormal amount of thick mucous.  The mucous can impair the function of both the lungs and the pancreas.  While there is no cure, there have been many advances in treatments and therapies over the past several decades, increasing both life expectancy and quality of life for patients.  Currently, clinical trials for a new drug are showing good promise as a potential treatment for the most common form of CF.

As a person who has dealt with both asthma and pneumonia, I can appreciate the struggle of sub-optimal lung function, though I know my experiences pale in comparison to what those with CF have to go through every day.  Having conquered both of my lung-related health issues, I feel it’s fitting to give back by using my lungs and running for the lives of others.

Please help continue the fight against CF by donating today!