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June 30, 1978.

Jimmy Carter was president and Grease was #1 at the box office. Chesapeake by James Michener was atop the list of New York Times bestsellers and “Shadow Dancing” by Andy Gibb was probably playing on the radio. Fans of the San Francisco Giants watched Willie McCovey become the 12th player in Major League Baseball history to hit 500 home runs and in Ann Arbor, Michigan a baby girl was born to Ron and Mary Waterloo. Their sixth daughter!

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June 30, 1978. Baby Betsy.

This past Saturday, we celebrated Betsy’s 40th birthday. It was a great opportunity to gather together with many of the people that love her the most. People have mixed feelings about turning forty. I know, I do! This October, I will…cease to be in my 30s (see, I can’t even say it!) and the pendulum of emotions swings back and forth on a daily basis. On the plus side, I still have my hair. But it has become a losing battle trying to pluck all of the grey out of my disheveled mop. I can afford to buy the really nice soccer shoes I used to dream about but often I can barely walk the day after I play in them.

I could go on.

For Betsy, turning forty feels different. When Betsy was born in 1978, the average life expectancy for someone diagnosed with cystic fibrosis was around twenty years. To have made it to forty and to be thriving is an unqualified victory. If Betsy had any grey hair (she doesn’t), it would be a badge of honor. Betsy has been through a lot in her forty years. There have been more than a few health crises along the way. Life now looks a lot different than it did twenty years ago but Betsy has not given in to discouragement. Betsy’s day-to-day existence is not without its difficulties but it is mostly full of joy and laughter and hope.

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1998. Bae (I think that’s what the kids are saying these days) home from college.

And we are hopeful! Betsy is feeling as good if not better than she has at many points in the last ten years. She is still chasing after our six and a half year old son, Lucas. Betsy is a great mom – always at his soccer games and school events. Lucas adores her! She has resumed a little running after some breathing and back difficulties forced her to take an unwanted hiatus. Her time for the mile isn’t quite what it was when she was tearing up the Mackinac Island Eight Mile Run back in college but she is running! She is still operating a successful tutoring business and making a difference in the lives of her students. She even manages to still have the time (and patience!) to help me find all of the things that I misplace.

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Betsy and her favorite boy (yes, I’ve been displaced 😉 )

There are a lot of exciting medical advancements too. The Cystic Fibrosis Foundation is constantly pushing the boundaries for new treatments and medications. We participated in the Great Strides fundraising campaign on a rainy Saturday this past spring. Our team amassed over $5000 in donations and nationwide nearly $30 million was raised, all of which goes towards funding cystic fibrosis research. Betsy’s pulmonary specialist is hopeful that maybe even within the next two years, there will be a new medication targeting the underlying cause of cystic fibrosis for people with Betsy’s particular gene mutations. A company called Planetary Biosciences has been working on new dietary supplements that have made a huge difference for Betsy and others. We feel optimistic!

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Team #Breathe4Betsy

To see Betsy at age forty is a testament to God’s faithfulness. It’s a testament to Betsy’s determination and perseverance. And it’s a testament to the love and support that we have received from our family and friends. Psalm 139 says “You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed.” We are thankful for each one of those days! We don’t know how many there will be (none of us do!) but I know Betsy will live them to the fullest, surrounded by love.

Just like Saturday. Happy Birthday, Betsy!

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June 30, 2018. Betsy & her sisters.

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Great Strides 2018

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We’ve got another cold and wet day today. Although I’m longing for warmer weather, unfortunately these temperatures aren’t outside the norm for spring in Michigan. But here’s something good…spring means that Great Strides is coming up! That’s something that always warms my heart.

Here is a write up about the walk from the official Great Strides page:

On the 30th anniversary of Great Strides – the Cystic Fibrosis Foundation’s largest national fundraising event – we celebrate the many milestones we have achieved thanks to our supporters. Each year, more than 125,000 people participate in over 400 walks across the country to support the Foundation’s mission to cure cystic fibrosis and raise awareness about this rare, genetic, life-shortening disease that makes it difficult to breathe.  Their dedication over the past 30 years has resulted in tremendous progress.

The CF Foundation is leading the way in innovative research and drug development, promoting high-quality, individualized care, and helping people with CF live better today. Nearly every CF drug was made possible by the Foundation and because of funds raised from Great Strides, people with CF are living longer, healthier lives and pursuing their dreams.

While we have come so far, we still have so much work to do. The lives of people with this disease are still cut far too short.

Last year our team raised over $4000 and we hope to match or exceed that amount this year! Please consider joining our efforts in some way. Our walk this year is at Washtenaw Community College on Saturday, May 12th at 11:00am.  To join our team, visit the Breathe4Betsy team page. If you’re not local but would still like to be a team member, you can join as a virtual walker and raise money for the team. If you’d like to support our fundraising efforts, please visit our personal pages ( JaimeBetsy, and Lucas). You can simply show up and walk with us as well!

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Come walk with us!

It’s hard to describe what it feels like to be joined by family and friends in these efforts. My spirits are lifted and I’m reminded that in spite of the many challenges this disease brings into my life, it also affords me blessings. One of these blessings is experiencing the great love and support of so many wonderful people. I am truly grateful!

CF Awareness: Answering Your Questions

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Thanks to everyone who submitted questions! You really got me thinking!

If you could give up one of your treatments/therapies/CF-related routines for a week, which one would it be?

I can only choose one? 😉 The treatment that I struggle with most is the breathing treatment and respiratory therapy that I do before bed, so I’d give that up for a week if I could do it without consequences. My morning treatment is actually harder because I’m far more congested first thing in the morning, but that one is so necessary for me to function that I never hesitate to do it. The instant gratification of being able to breathe and walk around without massive coughing fits is pretty motivating.

The evening treatment, on the other hand, is such a drag. I work four evenings during the week and my last students leave at either 8:30 or 9:00 pm. After that I’m pretty beat and I just want to relax, watch TV, spend time with Jaime, or go to bed. I hate having to initiate coughing and get my lungs all hot and bothered. Sometimes if I get coughing too hard, it’s difficult to stop and get to sleep.

If I miss the evening treatment, I still sleep just as well. But if I skip it, I have a harder time the next morning with more congestion and extra coughing. So there is a reward for doing it, but it’s not until the next morning.  Honestly, sometimes I’m just too tired to care that I’m going to pay for it the next day.

Are there are new CF medications or treatments that might help your lung function?

I think a little background information is helpful in answering this question. As far as medications and treatments for CF, there are five main categories. The great news is that thanks to the Cystic Fibrosis Foundation, all five categories are under research and new drugs and therapies are being tested and developed!

The first category is nutritional. I currently take digestive enzymes and CF-tailored vitamins to meet my nutritional needs. Because I am stable in this area, I don’t think any of the medications under development would be of great help to me. The next area is anti-infectives which include antibiotics. Most of the research is focusing on inhaled antibiotics which go straight to the lungs. Because of my significant asthma component, I cannot tolerate any of the inhaled antibiotics that are currently available, so I don’t have much hope that new ones will help me either.

The third category is anti-inflammatory drugs. I am particularly excited about this area of research because the asthma component of my CF causes a great deal of lung inflammation. There are currently five medications in the drug development pipeline. I truly hope one of them is a winner and will help me! The fourth category is mucus clearance which includes medications to thin the mucus and devices to help us loosen the congestion and cough it out. I currently inhale saline solution and a mucus thinner and blow in a device that vibrates my lungs. My mucus is still quite thick, however, so I’m excited that there are five drugs in the development pipeline and hope that one will turn out to be more effective than what I currently take.

The fifth and most exciting category is drugs that restore CFTR function. The symptoms of CF are caused by a faulty protein which is known at the CF Transmembrane Conductance Regulator (CFTR).  These drugs are designed to correct the defective protein. The defective protein inhibits sodium and chloride from moving in out and of the cells properly. There are many CF mutations and different types of mutations cause the protein to malfunction in different ways. There are currently two medications available to patients that help fix CFTR function. One medication has been particularly effective and patients who can take it have seen some significant gains in lung function and overall health. The second one has had more modest results but has still been very helpful to many patients. Due to my specific mutations, neither drug is effective for me (or available to me). I have one copy of the most common CF mutation and one rare mutation. Because I do have one common mutation there is still a good chance that there may soon be a drug in this category that will help me. I’m hoping!

If this topic sparked your interest, check out the Cystic Fibrosis Foundation’s Drug Development Pipeline for more information.

Would you ever consider a lung transplant?

The short answer is yes, I would consider it. But at this time I don’t feel certain that I would decide to go for it. My CF care team has never broached the subject with me because thankfully, at this time, I am functioning well even with diseased lungs. However, I have read some about the process and “know” people through online support groups who have gone through transplantation.

My understanding is that survival rates for patients who receive lung transplants are rising, but lungs are still a difficult organ to transplant. According to the Cystic Fibrosis Foundation, 80% of patients who receive a lung transplant are still alive after one year, and about 50% are still alive after five years.  The wonderful thing about transplant is that the new lungs will never have cystic fibrosis! However the rest of the body still does, so lung transplants are not cures. Also, transplantation can cause other problems. I’ve heard people say that when you have a transplant you trade one set of issues for another. First off, transplant surgery is a major operation and there are inherent risks there. As someone who has had two major surgeries and three minor ones, the thought of the surgery itself is more than a little frightening. Patients require 24-hour-a-day care for at least a month after the procedure and most centers require at least three family members or friends to sign up to be caretakers. It is also very expensive. It would be a lot to put my family through.

In addition, patients are always at risk for rejection, which is where the body attacks the new lungs as a foreign invader. Severe rejection can lead to lung failure. Because of this, transplant patients must take many strong medications to fight against rejection. Those medications can cause other complications such as cancer, recurrent infections, kidney infection, or diabetes.

I feel there are emotional implications as well. I haven’t studied this or talked to other transplant patients about it, but the thought of receiving the lungs of someone who has died a tragic death is a little hard for me. I wouldn’t feel right about praying for new lungs or hoping to get the transplant call just knowing that what I’m ultimately waiting for is someone’s untimely demise.  That said, I can imagine that the gift of organ donation might be a positive thing for the grieving family, and that blessing someone else with life from that tragedy might be a healing experience. I haven’t worked it all out in my mind, but these are my preliminary thoughts.

I’ve just listed a lot of negatives about lung transplantation, but the whole reason I would consider it is that when it is successful, it can add wonderful, healthy years to people’s lives! What a gift that would be.  Some lung transplant recipients go on to become athletes or climb mountains or do all sorts of things they could never even attempt before. That sounds pretty great to me. Also, there comes a point in most CF patient’s lives where transplant is the only remaining option for treatment. If that time comes for me, I feel confident that God will show me the path to take.

What’s one really hard thing about having CF that most people don’t know about?

Great question and a hard one!! I can’t decide between two things so I’m going to cheat and write about both. The first may better answer the “most people don’t know about” part of the question, and the second better answers the “really hard thing” part.

I hesitated to write about this at first because it’s kind of dark and depressing. But I’m trying to raise CF awareness, so here’s the honest truth. The first thing that came to mind is moments of panic. I have some pretty specific fearful thoughts that come into my mind. I’m not talking about the more obvious fears of an uncertain future or fears of getting sick. These are different. Sometimes I imagine that I will need to flee from something or someone and I can’t get away because I can’t breathe well enough to run fast.  I wonder what would happen if I was kidnapped or ended up imprisoned for some reason. How long would it take me to die a miserable death without access to my medications?

I have fears of being overpowered. I’m afraid of suffocating or being stuck in tight places. I’m scared of being buried alive in sand or snow. I can hardly stand to hang out in a blanket fort with Lucas or hide under the covers with him because after a few minutes, I feel smothered. I even hate to wear protective face masks because any sort of breathing obstruction makes me nervous and uncomfortable. I’m afraid I’ll need to rescue Lucas from something horrible and I won’t get to him in time. Now that my lung function is reduced, I don’t like having my face and head under water. I’m afraid of drowning.

When these thoughts or fears come to me during the day, it’s not hard for me to push them away and think about other things. But they also come in vivid dreams, and those can be downright terrifying. I have a recurring dream where I am unable to move, chained by some invisible force. There have been a few times in my life where I have been sick enough that I thought I was going to die for lack of breath during or after a bad coughing fit. It’s an awful feeling and I started having these fears and dreams after those experiences.

Even though I hate that part of the disease, it’s not as hard as other aspects because it’s not a constant problem. Which leads me to my second answer. I’m not sure people understand how often those of us with cystic fibrosis deal with change and loss, and how lonely that can make us feel. Because CF is a progressive disease, symptoms get worse over time. It may be obvious that we have to deal with more sick days, more coughing, more infections, and reduced lung function, but the resulting losses are more subtle. The sicker we become, the less we can do, and over time it feels like we are losing bits and pieces of ourselves along the way.

There are a whole host of things I did in my younger, healthier years that I can’t even attempt now. Some of them I have a wistful longing for–like being able to run the 8-mile race around the perimeter of Mackinac Island, or run down the side of a sand dune.  Some of them are simple and seemingly trivial…like helping someone move furniture. But both were a part of my identity that I lost. Betsy the runner is gone. Betsy, that girl who’s surprisingly strong for her size and who will pitch in and help with whatever–the one who enjoys a physical challenge–she’s gone too. That hurts. It’s really hard. Sometimes these changes happen slowly over time, and sometimes they come fast and furiously. At times I haven’t even had time to accept and adjust to my new limitations before I’m faced with a whole set to get used to.

These losses happen to everyone as they age, but when you have a disease like CF, it begins far too early and only to you. Your peers aren’t going through it. When you’re facing these things together, there’s a camaraderie, maybe even humor to be found in the situation. But it’s just painful when you’re experiencing losses alone. Because of the dangers of sharing germs, cystic fibrosis patients are not permitted to mingle. There are no face to face meetings or support groups.  Any support we seek has to be online. The online groups are wonderful, but it’s not the same as having a friend to share life with.  It’s different to chat online than to talk face to face over coffee, or laugh (and therefore cough) during a playdate at the park with our kids.  Sometimes I think it would feel really good just to get a hug from someone who really understands. I am blessed with so many wonderful, true friends and a family that loves me and helps me to bear my burdens, but at times I still feel alone in my world of disease.

How is your Fitbit streak going?

It’s going great! Today will be my 300th day in a row of 10,000 steps or more (assuming I finish this post and get off the couch). I’m pretty proud of that! It has certainly taken resolve on my part, but I’ve found that it’s not that hard as long as I plan activity into every day. If I don’t have a dedicated portion of the day to go for a walk or exercise, I make sure to spend 10 minutes here and there walking around the dining room table or the playroom. If I haven’t gotten my steps before I start tutoring, I pace back and forth in my office between students or if they’re working on something independently. Those steps really add up and it’s heart healthy and lung healthy just to move!
This long streak was only possible because I had a very good winter health-wise. I did get sick twice, but both illnesses were (relatively) mild and I was able to shuffle around the table even on the worst days. I find that if I’m having a harder day health-wise, a reasonable amount of movement goes a long way in making me feel better and creating energy. This exercise goal has improved my stamina overall and I’m thankful for that! I know I’ll break the streak eventually, but hopefully not anytime soon. I’d love to reach a year!
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Thanks for sticking with me through this long post! If you didn’t get a chance to ask your question, or if my answers raised more questions, feel free to submit one now in the comment section or by email (bvbrighthope@gmail.com). I’d be happy to write another post or answer you directly. Thanks for reading!

CF awareness

Great Strides 2017 – Breathe4Betsy

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It’s that time of year again, Great Strides time! Great Strides is the Cystic Fibrosis Foundation’s largest national fundraising event.  Here is an explanation from their website:

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 and raise awareness for this rare, genetic, life-shortening disease that makes it difficult to breathe.

The CF Foundation is leading the way in innovative research and drug development, promoting high-quality, individualized care and helping people with CF live better todays. Nearly every CF drug was made possible by the Foundation and because of funds raised from Great Strides, people with CF are living longer, healthier lives and pursuing their dreams. But still, the lives of people with this disease are still cut far too short.

Great Strides provides a fantastic opportunity for family, friends, students and colleagues to come together to help make a difference in the lives of people with CF.

Together, let’s LACE UP. WALK. CURE CYSTIC FIBROSIS.

We had a great time walking with our teammates last year and we raised over $4000. Please join us in our efforts this year!  If you’re local and can come to the event, it is being held on May 13th at 11:00am.  This year’s location is at Millpond Park in Saline due to construction at the usual walk site.  To join our team, please sign up here. If you’re not local, you can still sign up for the team and raise money as a virtual walker. If you would like to support my fundraising efforts, please visit my personal page.

 

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Come take steps and make strides with us!

We have so much hope that new life-altering treatments and maybe even a cure will be discovered in my lifetime. There is a lot of positive momentum now and strides are truly being made.

We’re not there yet, but we’re closer than we were yesterday. And so we keep walking.

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Thank you all for your love and support!

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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