The Chilliest Great Strides Walk of All Time

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I don’t know that for certain but I do know it was 36 degrees this morning when I woke up and not a whole lot warmer by the time we all met up for the Great Strides fundraising walk today. Come on people, it’s May for crying out loud!

Overall though, it was a great success! We had about 30 team members who braved the chilly weather to walk with Betsy and our team managed to raise over $4000 for cystic fibrosis research.

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(Most of) Our Great Strides Team!

We are very thankful for all of our friends and family who participated in one way or another. We are thankful for tangible expressions of solidarity and support. And we are thankful for the ongoing research that is working to develop new treatments for people with cystic fibrosis and hopefully, one day, a cure.

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Betsy, Lucas, and I rocking our pink #Breathe4Betsy headbands!

The Great Strides campaign is now done for 2016 but you can support cystic fibrosis research any time at the Cystic Fibrosis Foundation website!

Thanks again to everyone for their love and support!

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A few weeks ago, some dear friends of ours approached us about forming a team to walk in this year’s local Great Strides walk. They’ve named the team Breathe4Betsy and we are working to gain members and raise money for the walk!

Here is an explanation of Great Strides from the Cystic Fibrosis Foundation’s website:

Great Strides is the Cystic Fibrosis Foundation’s largest national fundraising event. Each year, more than 125,000 people participate in hundreds of walks across the country to support the Foundation’s mission to cure cystic fibrosis. The funds raised from Great Strides helps provide people with CF the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment and ensuring access to high-quality, specialized care.

Great Strides continues to gain momentum, as do our research efforts and the progress we’ve made in the search for a cure. The CF Foundation has raised and invested hundreds of millions of dollars to support the development of new CF drugs and therapies.

Jaime and I have participated in this walk on and off over the years as individuals and are excited and honored by the formation of this team!  If you are local and you can join us, check out Breathe4Betsy’s Team Page. We’d love to have you on the team. This year’s walk is Saturday, May 14th at 11:00am at Gallup Park in Ann Arbor. You can also join as a virtual walker if you want to raise funds but can’t make the event. If you would like to support my fundraising efforts, please check out My Personal Page.

Because I love including photos in my blog posts, I’ve added these pictures of Jaime, Lucas and I walking at Nichols Arboretum this past fall (see the connection?!) Gallup park should be equally beautiful in May! The Great Strides walk is a 5K though, so with that in mind, I’ll definitely be wearing different shoes.

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Lucas always takes us off the beaten path…in more ways than one.

Thank you for your support! We hope and pray that CF will soon stand for “Cure Found.”

 

Who I Am

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It’s a sunny day here, but the brightness surrounding me cannot seem to penetrate my heart. My gloominess comes from the several nights of poor sleep that have accompanied my start of oral antibiotics and the abdominal and back pain that have been near-constant companions these past few days. Pain wears me out and getting less sleep than I need tends to shade my optimism.

Days of illness, even illnesses that are mild in the grand scheme of things, make my world close in. I haven’t left the house much in that last week. My normal routine has been disrupted by the presence of this infection. It’s hard not to focus on what’s not getting done and what’s not working correctly in my body.

Recently, I read a blog posted by the Cystic Fibrosis Foundation, written by a woman named Katharine Scrivener.  One thing Katharine said resonated with me.  She said, “The older I get, the harder it is not to become my disease…[i]t’s a daily struggle to live my life outside of my disease–to not let it seep into each moment of my day.”

I couldn’t agree more. At one time, CF seemed to be just a footnote in my life.  Now, more often than not, it seems to be the headline, especially on days like today. I know I am much more than my disease, but the struggles of CF have seeped into so many moments of my day. There are times when I just want to forget all of it–the medications, the breathing treatments, the physical therapy, the health-preserving exercise, the worries, the uncertainties, the limitations, the pain.  I want to cast it all aside and just live free.  I want to be “me” untethered.

There was a time in my life where I had to make a conscious effort to accept CF as part of who I was since my main struggles started after I became an adult. I have done that, but now I feel it has become too much of me.  That it is beginning to color too many aspects of my life. To quote Katharine, that it is “chipping away at who I am.” It occupies too much space in my mind.

This post is partly a challenge to myself–a challenge to keep cystic fibrosis in its place. It’s something I’m still learning how to do–how to keep up with the demands of living with this disease, how to weather the illnesses, how to accept the limitations and push past the disappointments without becoming the disease.  How to live outside of CF even while dealing with its implications.

Today I read Isaiah 43.  The first three verses are as follows:

But now, this is what the Lord says—
    he who created you, Jacob,
    he who formed you, Israel:
“Do not fear, for I have redeemed you;
    I have summoned you by name; you are mine.
When you pass through the waters,
    I will be with you;
and when you pass through the rivers,
    they will not sweep over you.
When you walk through the fire,
    you will not be burned;
    the flames will not set you ablaze.
For I am the Lord your God,
    the Holy One of Israel, your Savior.”

These verses spoke to me today about my identity. Who am I? I am God’s child. He has summoned me by name and I belong to Him. It reminds me that when I pass through the waters, the rivers, the fires of this life and this disease, God will be with me, and I, the real “me,” will not be swept away. When I shift my gaze away from my circumstances and onto God, CF goes back to its rightful place. This disease is only one of the particulars of my life. It has in many ways shaped me, but it is not my identity.

Who I am? I’m Betsy–God’s child, a wife, a mother, a daughter, a friend, and a teacher. I am a joyful, loving, hopeful woman. And my CF? It’s there, but it’s just a footnote.

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A Crowded Corner

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I have happy things to report today! First an update on Operation Lace Up.  Last night I reached my goal of running two miles without stopping!  I consolidated the first five weeks of the Couch to 5K because I wanted to complete the two-mile run before my follow-up pulmonary appointment. A good friend of mine came over and ran the two miles with me.  It was the hottest day of the year so far (a high of 90 degrees) but we ran around 8:00pm and it felt surprisingly pleasant. I was able to complete the two miles in about 27.5 minutes (roughly a 13 minute 45 second per mile pace) which I was very pleased with! My friend just ran a marathon a few weeks ago at a much faster pace, so I’m pretty sure it was more of a stretch for me than her, but she was kind enough to break a sweat at least 😉  It was so great to have her support!

Today I had my pulmonary appointment.  I’ve had a few moments of anxiety about this appointment the past few weeks.  Even though I’m feeling great with low levels of congestion and (relatively) high levels of energy and activity, I was worried about that cantankerous FEV1 score.  I was hoping to see a gain but my scores don’t always correlate with how I’m functioning. This morning I woke up feeling peaceful with a verse from the Psalms running on repeat through my head:

“She will have no fear of bad news, her heart is steadfast, trusting in the Lord.  Her heart is secure, she will have no fear; in the end she will look in triumph on her foes.” Psalm 112:6-8.

What blessed assurance!

Then my phone started blowing up.  At first I wasn’t sure what was happening.  I got one text with a photo, than another, than another.  You see, unbeknownst to me, Jaime had purchased some “breathe” bracelets from the Cystic Fibrosis Foundation and offered them to family and friends to wear as a show of support and solidarity. People started sending me pictures of themselves wearing the bands, saying they were thinking of me and praying for me this morning since it was my appointment day. I didn’t have any time to worry because I spent all morning overwhelmed and moved by the amazing show of love and support.

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My wrist is in the center surrounded by pictures sent to me today from family and friends wearing the breathe band.

I carried that joy with me into my appointment and scored a 42 on my FEV1!  That is an eight point gain from five weeks ago and boy, I was thrilled. During my exam my lungs sounded clear, my oxygen saturation was normal, and my doctor was extremely pleased with the improvement in my symptoms and my increased exercise tolerance.  I’ll go back in 6-8 weeks for another check.  They will be monitoring me more closely as long as I’m taking the anti-fungal drug. I hope to see more healing take place in the next few months and hope to see my FEV1 get back to my baseline of 49 (or surpass it!).

I’ve mentioned before that a lot of good has come from the presence of cystic fibrosis in my life.  Today was a day overflowing with blessings that come only from this struggle. Fighting a tough battle like I did this winter with my health and experiencing victory is a spectacular feeling. Setting and reaching reasonable exercise goals in spite of a compromised body feels fantastic too. Physically, running is hard and not enjoyable. But persevering through the challenge is exhilarating. I thank God for the strength He gives me to press on.

Being on the receiving end of extravagant love and support from family and friends is also an amazing, moving experience. Jaime commented that I have a lot of people who love me and care for me and that are in my corner. And it’s true. I’ve been blessed with a wonderful family and many loving friends. In case you didn’t know, the phrase “in my corner” comes from boxing. The cornerman is a teammate or a coach who assists the fighter during the match. They stand back from the battle, in the corner of the ring, and help the boxer with the fight through coaching, advice, instruction and encouragement. They can’t throw punches or get right in the fray, but because of their proximity, they provide invaluable help and support to the fighter.

It’s the same with my cystic fibrosis. I’m the only one who can actually fight my battle. No one else can do the dirty work for me. But my loved ones stand in close proximity to me and help me through my battles by reaching out with love, with prayer, with help, and with the encouragement I need to keep up the good fight. I know for certain I could not do this alone.  So thank you friends and family for being in my corner, in the ring with me, experiencing the bitter moments of frustration and defeat as well as the sweet moments of triumph and victory.  Thank you being God’s dispensers of grace, and love, and strength. Thank you for crowding my corner.

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A Stray Gray

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A little rainbow of hair color.

A little rainbow of hair color.

Well, it’s official. I found my first gray hair. I wasn’t looking for it, but something shiny caught my eye in the bathroom mirror the other day, and sure enough, there it was.

I know plenty of people get gray hair before age 36.  I thought for sure that after the first year of Lucas’s life I’d be completely gray. But every now and then I’d check and there wouldn’t be any there.

I have seen that gray hair is upsetting to many people. (Somebody in this household started getting them several years ago but no one would know because that somebody yanks them all out.)  Not so for me.  Perhaps it’s because the gray hair isn’t that noticeable. It blends in with my hair color. My hair is some ambiguous shade of blond.  My stylist once called it honey blond. A family member once called it dirty dishwater blond (uh, thanks for that lovely description).  Whatever it is, the gray hides in there pretty nicely.

The truth of the matter is, I’m thankful to be getting older! I just read a publication on the Cystic Fibrosis Foundation website analyzing the patient registry data from 2013.  According to their document, the median age for survival is now 40.7 years old for CF patients. That is up from 33.4 years old in 2003.  When my sister Sheri was diagnosed in 1970, her life expectancy was age 12.  What wonderful gains!

As I’ve mentioned before, there is a lot of exciting research going on which addresses the basic defects of the cystic fibrosis gene. Patients with certain mutations are already benefitting hugely from new therapies and more research is in the works for the other CF mutations.  I hope when the patient registry data is analyzed in 10 years, that even more spectacular gains will have been made.

So bring on the gray hair!  I’ll wear it proudly.