Odds & Ends & an Update

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Last month passed quickly, and without any posts from me! I thought that once Lucas was in school all day I’d be sitting on the couch twiddling my thumbs, but somehow that has not been the case. The days have flown by with almost no couch-sitting. I am settling into my new routine. I have a new work schedule which I’m getting used to. I definitely have more kid-free time than I have had for the past six years, but between physical therapy appointments for my back, other health maintenance activities and appointments, work, and running the household, I’ve not been bored. I’ve enjoyed finishing a few projects that have been half-done since Lucas was born, like his baby book! I’m sorry to say he will never know certain pieces of information (like when his last two molars came in) due to my negligence in recording the information at the time, but I’m pretty sure he’ll continue to live and thrive not knowing.  Thankfully!

One lesson I’m learning in these first weeks of having more time is that my productivity addiction is alive and well. I have been unable to be super productive since Lucas was born–in part because of the demands of caring for a young child, and in part because of the progression of my disease and the resulting loss of energy. I am one of those people who tends to put productivity on a pedestal, perhaps because deep down, my self-worth is too wrapped up in what I can or can’t do.  Clearly it’s something I need to continue to work on. There have been days recently when rather than relaxing, resting or enjoying some quiet, I’m wondering what else I can get crossed off my list. It feels good to get to the end of the day and be able to point to ten things that I accomplished. But just because I can get more things done daily, doesn’t mean I should wear myself out doing so. Being more restful affords me energy and an uncluttered mind to be fully present for the limited time I get to spend with Lucas once he gets home. Note to self: that is more important than any number of completed tasks. What can I say, I’m a work in progress!

I have been spending some time exercising and getting steps each day, but I did break my 10,000 or more steps a day Fitbit streak in early September. The streak lasted for 410 days, so it was a little sad to let it go, but it was the right choice. I broke it on Labor Day weekend. We were with my family for a reunion and I simply didn’t have the energy for both our planned activites and my 10,000 steps. When I mentioned to my dad that I would be breaking my streak, he reminded me that these goals that we set for ourselves only have value as long as they are serving us. The Fitbit streak did serve for me for a while! It helped me to become more active and build stamina. It kept me moving (and therefore healthier) during some emotinally challenging months. However, had I forced myself to get 10,000 steps that day, I would have been harming myself just to uphold the streak. That, my dad said, is serving the goal, and in doing that, it loses its value. Wise words, don’t you think? I don’t need to be a slave my goals. With that in mind, it was much easier to let it go.

Last week I headed back to the CF clinic for my three-month check up. After a rough summer, I was pretty nervous to see where my lung function had landed. It was 35%. That was definitely disappointing as I hoped to at least get back to 38% after all the treatments and therapies I went through this summer, but I wasn’t exactly surprised. In spite of that 35%, I have been feeling more stable this month and am hoping that there is still some healing taking place that will allow me to regain what has been lost. The good news is that my oxygen saturation was 99%, my heart rate and blood pressure were normal (in spite of doctor’s-office-induced anxiety!) and all other aspects of the exam were good too.  In other words, my body is doing a great job of coping with the low lung function. I’m exceedingly grateful for that!

Lucas and Jaime are doing well. I’ll write a separate post about Kindergarten soon, but for now I’ll tell you that Lucas is doing great handling the long day and he loves his classmates and his new school. We are so proud of him! He has enough energy left over to play soccer, this season for a team comprised of kindergarteners and young fives from his school and coached by the best coach in the world (Jaime). 🙂 I just love watching those two together on the field and it’s fun to see how much confidence and skill Lucas has gained since the spring. My boy is growing up!

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Fighting for the ball!

At practice the other day, Lucas came to the sideline where I was watching and told me he was going to go back out on the field and score a goal, just for me. And he did! He was so excited and I felt honored. He’s been growing and changing so much lately and is relying on me less and less. His sweet words and actions sure help as I’m adjusting to these changes.

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Gooooooooooal!

All in all we are doing well! Life has its challenges but we are experiencing many wonderful blessings too. And there are always fresh reasons to hope.

Yet this I call to mind and therefore I have hope: because of the Lord’s great love, we are not consumed. For his compassions never fail. They are new every morning; great is your faithfulness. ~Lamentations 3:21-23

 

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Sheri’s Answers

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A few weeks ago, Jaime, Lucas and I left for our annual beach weekend in western Michigan. We started this tradition when Lucas was three and now it’s something we all look forward to. We’re fortunate that my parents live just a little more than a half hour from Lake Michigan so we have the most wonderful place to stay!

This year we left in the early afternoon on Friday and drove straight to the beach. I figured we would have a few hours of sunlight left to enjoy the sand and watch the waves. It had been cold and windy earlier in the day so we knew we wouldn’t be able to swim but the air was fresh and the water and sky were so beautiful.

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It was only a short time before the park emptied out, and finally, we were the only three left on the beach. “Mommy, I just love watching the waves,” Lucas told me as he snuggled on my lap. Me too. It was wonderful.

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As I gazed at the expanse of the lake, it struck me how peaceful it was on the beach. It wasn’t quiet–the waves were choppy and rough and they crashed forcefully onto the shore. Seagulls were squawking and scuffling.  But still it was peaceful, natural, lovely. A gentle breeze danced around us and I found myself breathing deeply of air that felt clean and pure. I could practically feel my heart disarm, setting aside its indignant complaints and surrendering to God’s peace. Peace amidst the turbulence.

The words of the old hymn, Be Still My Soul, came into my mind, and I was transported back, again, to the summer when Sheri was dying. That hymn was meaningful to our family around that time. I quoted from it in a letter I wrote to Sheri just before she died. I posted it on my refrigerator as a way to be strengthened in my grief. My sister Julie wrote a beautiful piece incorporating its words on the first anniversary of Sheri’s death. Sheri died on September 4, 2004–thirteen years ago, today. It’s so hard to believe she’s been gone that long. I miss her so much.

I think of Sheri all the time, perhaps even more now that I find myself wrestling so much with the effects of this disease. I often wonder what advice she might have for me. Her faith in God sustained her, this I know. I saw it with my own eyes. But would she have specific suggestions for me? Would she attempt to answer the unanswerable questions? She fought through a seemingly endless string of challenges in her life without bitterness, and left a mark on this world that no one who knew her would deny. She was so faithful and so incredibly strong. But I know it was hard. She told me it was hard and I saw her struggle. I imagine that sometimes, when the house was quiet and the night was dark, she too felt overwhelmed by the burden of the fight and surrendered to the tears. Knowing that makes me feel close to her, even though 13 years have passed since I’ve talked to her and touched her.  Sometimes I just go ahead and ask her the questions. I don’t know if she can hear me, and I know for sure I won’t hear an audible reply, but sometimes just giving voice to them brings me comfort.

Sheri trusted God. She had hope, she had confidence in His goodness and love, and she knew God was in control. She knew He would give her the strength she needed to live and love fully until the day He took her home. And He did. There were good days, great days! Days filled with joy and hope and love. She touched so many lives and accomplished so much in her 35+ years here on earth. There were bad days full of hospitals and doctors, medicines, loss, and pain. Some days were downright ugly and filled with darkness and despair. But the beauty of her spirit is what we remember most of all–how hard she fought, how victorious she was, how strong, how loving, how generous. We remember those things because she refused to be defined by the disease that plagued her. At times cystic fibrosis ruled her body but she staunchly refused to allow it to break her spirit. Her husband Pete once told me that rather than allowing CF to define her, Sheri defined CF. Cystic Fibrosis on Sheri’s terms.

As the lyrics of the hymn scrolled through my mind that evening on the beach, I began to think that the words contained some of the answers she might give me, answers to the questions of how to weather the losses and disappointments, how to face my fears, how to resist bitterness and choose thankfulness and joy even when I feel battered and bruised. “Be still my soul” is a good start.

“Be Still, My Soul”
by Catharina von Schlegel, 1752
Translated by Jane Borthwick, 1855

Be still, my soul; the Lord is on thy side;
Bear patiently the cross of grief or pain;
Leave to thy God to order and provide;
In every change He faithful will remain.
Be still, my soul; thy best, thy heavenly, Friend
Through thorny ways leads to a joyful end.

Be still, my soul; thy God doth undertake
To guide the future as He has the past.
Thy hope, thy confidence, let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul; the waves and winds still know
His voice who ruled them while He dwelt below.

Be still, my soul, though dearest friends depart
And all is darkened in the vale of tears;
Then shalt thou better know His love, His heart,
Who comes to soothe thy sorrows and thy fears.
Be still, my soul; thy Jesus can repay
From His own fulness all He takes away.

Be still, my soul; the hour is hastening on
When we shall be forever with the Lord,
When disappointment, grief, and fear are gone,
Sorrow forgot, love’s purest joys restored.
Be still, my soul; when change and tears are past,
All safe and blessed we shall meet at last.

I love you so much, Sheri. Thanks for loving me. Thank you for being a great example, leaving for us a legacy that continues to guide and inspire our journeys of life and faith. I’m so grateful for the 26 years I had with you, and that I’ll see you again, when the vale of tears is lifted and love’s purest joys are restored. Until then, you will remain forever part of the fabric of my being, my dear and beloved big sister.

Sheri

Sheri Leigh VanBruggen, September 26, 1968 – September 4, 2004

 

 

Living in the Shadow

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This summer has been such a mixed bag. There have been many great things about it. I love the more relaxed pace of the afternoons and long evenings. Last night after dinner the three of us headed down to the park so Jaime and Lucas could play soccer and I sat on a park bench watching them run and laugh and enjoy their health and freedom. It was heavenly.

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Run like the wind, boys!

I’ve loved the lazy mornings and the long bike rides and eating breakfast at 11am. I’ve loved the swimming and biking and playdates. Sometimes I think I never want summer to end.

This, however, is the most I’ve ever struggled with my CF in the summertime if I’m remembering right. It’s as if my lungs have forgotten that this is supposed to be my healthiest, most carefree time of the year. Instead I spent most of the month of June on a some combination of IV antibiotics, oral antibiotics and steroids. I had the month of July “off” but struggled through a particularly challenging adjustment period. Once I was through the adjustment phase I was dismayed to find that my lung function had dropped back down five points and after consulting my doctor, we began a round of oral antibiotics at the start of this month. They didn’t seem to be cutting it so last week I started a burst of steroids as well. I can’t find my footing and my lung function is stubbornly refusing to climb back up, even while on the medications. It’s been incredibly disheartening.

My emotions have taken a pretty hard hit, and that has perhaps been the hardest part of this summer. Just three short months ago I was flying high. I was so relieved and excited to have gotten through the winter relatively unscathed for the first time in several years. My heart was brimming with hope and thankfulness. I thought I had finally regained the strength and stability I’d been laboring towards for the past two years and I fully expected to continue to gain health and strength through the summer months. Suddenly I could imagine things for myself that I barely dared to hope for during some of the hardest moments of the past two years. I thought that after jumping hurdle after hurdle I’d finally reached my goal. Yet here I am, no better off than I was two years ago. Back to the beginning again. I imagined blue skies and puffy white clouds, and instead the skies have been dark and the storm clouds menacing.

And it hurts. Dreams are threatening to slip away forever. The hope, the joy, the anticipation I felt last spring seems like some sort of cruel joke now. I feel betrayed. Was I a fool for expecting those clear skies?

I know that in these hard times, the only thing that keeps me from sliding into an abyss of despair and bitterness is my hope and trust in God. But the truth is, it can be very hard to trust God in times like this. As humans it’s our natural tendency to assign blame when things go wrong. It makes us feel like we have some control over our destiny. So in these circumstances, when there’s nowhere to point the finger, sometimes I find myself wanting to blame God. Is God responsible for my current state of health? No, I don’t believe that. But part of me wants to be angry that after filling my heart with hope and joy this spring, He didn’t stop the events of this summer from happening. Why.  Why?

I recently re-read the book Disappointment with God by Philip Yancey. If you haven’t read it, you really should. It’s an open, honest book that explores the questions many of us are hesitant to voice aloud–questions of God’s fairness and accessibility and why He doesn’t consistently swoop in to prevent our hurts–why evil and disease and death seem to have free rein in this world. In one chapter, Yancey discusses Job, specifically The Wager at the beginning of the book, where Satan asserts that we humans are not really free. He argues that we only love God because of what He does for us; that we only love him because of His blessings. As the story goes, Satan is proved wrong by the life of Job, who amidst a staggering amount of suffering, still clings, even if by a thread, to his hope and trust in God.

Satan denied that human beings are truly free.  We have freedom to descend, of course–Adam and all his descendants proved that. But freedom to ascend, to believe God for no other reason than, well…for no reason at all? Can a person believe even when God appears to him as an enemy?…When tragedy strikes, we will live in shadow, unaware of what is transpiring in the unseen world. The drama that Job lived through will then replicate itself in our individual lives…Will we trust God? Job teaches us that at the moment when faith is hardest and least likely, then faith is most needed. His struggle presents a glimpse of what the Bible elsewhere spells out in detail: the remarkable truth that our choices matter, not just to us and our own destiny but, amazingly, to God himself and the universe he rules.” Philip Yancey, Disappointment with God, p. 192-193

I don’t know why God is allowing these struggles in my life right now. Part of my healing is simply acknowledging that and admitting how frustrated and angry and hurt I feel. The next step is making the choice to have faith and to trust God. These feelings of faith and trust can be impossible to muster up on my own. That’s where I turn to the example of the man in Mark 9 who sought healing for his son. He acknowledged his doubt and asked Jesus to help him to believe. Similarly, the disciples asked Jesus to increase their faith in Luke 17. I imagine that Jesus was pleased with those requests. God is not surprised nor do I think He is disappointed with my angry feelings.  He’s my father, after all, and He understands hurt and pain. I think it makes Him angry too. I may be living in the shadow now, unaware of what is transpiring in the unseen world, and unaware of how this will all work out. But I am never in the shadow alone and my response matters. And so even though my heart is broken and wants stay locked up tight, I ask God to give me faith–faith to believe that He is trustworthy and that He will provide whatever it is I need. Faith that He will complete the work He has started in me and that His plan for me is good. I ask Him to open up my heart so that He can fill it with peace, and then hope and joy again.

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Photo by Joyce Gan Photography

“For I know the plans I have for you,” declares the Lord, “plans to prosper and not to harm you. Plans to give you a hope and a future.” Jeremiah 29:11

Keeping Hope Alive

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As Jaime recently mentioned, our summer has been great overall! He’s a summer enthusiast, I’m a summer enthusiast, and Lucas has followed in our footsteps to adopt summer as his favorite season as well. We’ve enjoyed days at the pool, time in our garden, park trips, games, lots of soccer, visits with family, art projects and bike rides. If you ask Lucas, though, he’ll tell you that his favorite part of summer is sleeping in as long as he wants. I didn’t realize those attitudes started at the young age of five but I’d have to agree, sleeping in is the best!

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A pool date and ice cream with cousins! Well, ice cream for the cousins and a banana for Lucas.

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Playing soccer in the sprinkler.

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Perler bead art project meets Lucas’s love of deer signs!

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Scrambled States game with more cousins!

Jaime also reported that I had been back to the doctor after finishing my round of IVs and was relieved to see that my lung function had come back up to 38%. When I first began the IVs I wasn’t sure what to expect. When I was on them two years ago I went from feeling a little sick to feeling horrible within the first week. This time, however, I felt much stronger and more stable throughout. Relief flooded in when I felt my breathing ease and I knew I was headed back up towards that 38%. Then I started to hope for more. I thought maybe I could surge up into the 40s again which would give me a little more cushion in case my lung function settled. During antibiotic treatments, my lungs are healthier than usual due to reduced congestion levels and less inflammation. It’s not uncommon for my lung function to drop a few points after I’m off the medications, once my chronic levels of bacteria return with their accompanying symptoms.

I made slow and steady progress in the first two weeks of my IVs, but into the third I felt myself plateau. It’s okay, I assured myself, at least you’re back to baseline.  I remember telling my sister that I almost wished I hadn’t hoped for the 40s because it looked like it wasn’t going to happen. It’s tiring being a hopeful person sometimes. Allowing yourself to hope means opening to the door to disappointment. Hopes that aren’t realized lead either to despair or require me to readjust my expectations.

I decided to readjusting my expectations was the way to go. Having done so, I was relieved, even excited to blow the 38%. The rest of the appointment went well too–my blood oxygen saturation, blood pressure, temperature and pulse were all normal. My lungs sounded clear and my heart sounded healthy.  The only thing that gave me pause was my doctor’s confession that he would feel more comfortable once I strung together six months of stability and we saw that the 38% was sticking.

I wanted to feel joy about the 38% and satisfaction for how hard I worked to see that number again, and I did, at least for a time. But after a few days, I began to feel the weight of his comment. I know where he’s coming from. What happened to me–a sudden and not-easily-explained eight point drop in lung function is not a good thing. He has treated hundreds of CF patients over the course of his career.  He certainly knows that lung function can slip down after a course of treatment. He knows from experience that as baseline lung function drops, patients are more likely to have frequent infections and health becomes more difficult to maintain. He’s a compassionate and caring man but he never sugar coats the truth.

And so a few days after the appointment I felt myself sliding into a place of grief. I felt sad that somehow I have gotten to this place of 38%.  I grieved the fact that I was even temporarily pleased with it. Wasn’t it just yesterday I was struggling because I had dipped into the high 40s? And not so long before that I was stuck in the upper 50s, straining with every fiber of my being to get back into the 60s? The honest truth is, I am sick and tired of readjusting my expectations.

With these unhappy thoughts coursing through my mind, I entered the adjustment phase–the span of time that my CF symptoms spike up as my body gets used to life without the help of antibiotics.  This means hours of coughing each morning and again in the evening, back pain, headaches, and poor nights of sleep. It’s about as enjoyable as it sounds. I began to feel certain that I would work and strive and do everything in my power to maintain that 38% and that it wouldn’t be enough, and my lung function would slip down to a new, lower normal. Sometimes it’s hard to hold onto hope when you’re so frequently disappointed, and feeling awful doesn’t help either.

Alexander Solzhenitsyn, who spent years in a Soviet work camp (and therefore knew a lot about despair) said, “All that the downtrodden can do is go on hoping. After every disappointment they must find fresh reason for hope.” Why is hope so important? We know from medical studies that hope itself has a healing power. Hope causes the placebo effect–where patients show improvements just because they believe they are taking a medication that will help them. Hope is such a strong influence that many drug studies are done double-blind so that the patients aren’t influenced by the unconsciously communicated hope of the researcher. There are studies that show that patients who have an attitude of hope experience much better outcomes than patients who feel defeated or depressed, and true hopelessness can even result in death.

Hope is an essential part of a healthy soul. When I’m hopeful I believe that there are good things ahead and that my life is worth fighting for.  It keeps me from giving up. I do get tired of readjusting my expectations. I weather plenty of disappointments in my life with cystic fibrosis. It’s hard that with a progressive disease, what I’m hoping for feels like “less” over time. Just two years ago I was hoping for 50% lung function. Now I’m hoping for 40%. Or even 38%. The numbers are less, but what is behind them is really the same. I want the health and strength to live a full and meaningful life.

The “small” hopes–hopes to recover from illness, hopes for a higher lung function, hopes for a better day tomorrow–they are important. If I didn’t wish for those things, if I didn’t think they were possible, I wouldn’t fight nearly so hard for them.  Sometimes they lead to disappointment. But better to hope and be disappointed than to live in darkness and despair.

I have other hopes too, ones that don’t require any adjusted expectations. I have the hope that God will transform and redeem my pain and bring wonderful good out of it–for me and for others. I believe that the ugliness and pain of this disease is only temporary but that the good God brings from it will be eternal. I don’t know all the ways God has redeemed my suffering but I have witnessed some things. I have seen my faith become stronger and deeper. I have been drawn and into a closer relationship with God and with others because of my dependency. I have struggled but I have also experienced victories. I have been knocked down but I have also overcome. The joys would not be so sweet without the hurts nor the victories so gratifying without the struggles. I know the eternal glories that await me when this life is through will far outweigh any loss I have sustained. I know God is using this disease for my good. I have built my life on that hope.

And my desire for a full and meaningful life? That can happen at 100% lung function, it can happen at 50%, and it can happen at 30%. It may look different at each step of the way and it may involve adjustments and disappointments. I may need to find fresh reasons for hope on a regular basis. But until the day that God calls me home to heaven, I know He will help me to truly live.

We wait in hope for the Lord;
    he is our help and our shield.
In him our hearts rejoice,
    for we trust in his holy name.
May your unfailing love be with us, Lord,
    even as we put our hope in you. 

Psalm 33:20-22

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An Update

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Although it’s only been a three weeks, it seems like a lifetime ago that I had my line placed and started my IV antibiotic. Time has been crawling along as I am waiting to be free from this disruption and back to usual life. I’d say things have gone as well as possible. It’s certainly not fun. I’ve been forced to follow an infusion schedule which interrupts my sleep and my plans. The medication itself contributes to a tired feeling and gives me restless nights and bad dreams. I’m only supposed to lift a maximum of five pounds with my right arm which majorly cramps my style. The infected congestion has been very stubborn about leaving my lungs so I’ve had to do unpleasant things in an effort to clear it which has made my back and head unhappy. We had to miss a planned vacation due to the timing of my treatments.

But there have been many blessings as well. My sister came and stayed for eight days! I never get that kind of time with my sisters. Jaime has been able to take some time off this week for a little “staycation.” Having him around has been a treat for both Lucas and I and has allowed me the flexibility to get extra rest. I’ve been going back to bed every morning after my first infusion. Having the ability to do that has made a giant difference in how much strength I’ve had through this ordeal, even if my days haven’t started until 10:30am. And thankfully, my lungs are feeling much better than they did at the start of all this. I didn’t even realize how poorly I’d been breathing until I started breathing better. What a relief!

The better breathing brought with it a rush of adrenaline–the kind of adrenaline that makes me want to do 100 projects.  Jaime has been helping me keep those impulses under control. Last weekend was the first weekend without soccer for Jaime, and being the first-rate husband he is, rather than planning a relaxing weekend for himself, he decided to help me tackle a few yard projects I’ve been dying to do. These are things I knew I couldn’t attempt on my own with a PICC in my arm, but with Jaime’s help and supervision we got a ton of work done.  He only scolded me a few times for lifting things he thought were too heavy or being a little too crazy. We had a few conversations that went something like this:

Jaime: How did those wood chips get spread? Those bags are heavy! Plus you shouldn’t be breathing that stuff in!

Betsy: Well, I didn’t really lift it, I sort of tipped it. And I wore a mask.

Jaime: …

***

Jaime: How did those rocks get over there? They definitely weigh more than five pounds!

Betsy: I have two arms, remember?

Jaime: …

***

Jaime: Don’t you think you should take a break?

Betsy: But it’s really nice out and yard work makes me happy. It’s therapeutic!

Jaime: …

***

Jaime: I have to run an errand.  While I’m gone DO NOT finish this project by yourself!

Betsy: …

***

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This is what we started with…a weedy mess.

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Goodbye weeds, hello wood chips.

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Lucas was a big help…

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Except for when he was chasing butterflies :).

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It turned out really nicely!

Gardening and yard work really are therapeutic for me. I have always loved to be outside. I enjoy growing flowers and veggies.  Being in nature invigorates me and gives me peace–both things I needed during these weeks!

My flowers…

 

 

And vegetables.

I’ve been spending time almost every day exercising on the treadmill or outside as well and have worked up to walking two miles in 27.5 minutes. Lower back pain has made running impossible for me since the fall. It’s frustrating not to be able to jog but my doctor assures me that walking this fast will be just as beneficial. I’ve been able to continue my 10,000 daily steps as well.

I also had my 39th birthday last week! It’s crazy to think that was my last birthday in my 30s. Having cystic fibrosis gives me a different perspective on age, though. I’m so grateful to have made it this far and I’m hoping for many more years. The current predicted median survival age for CF patients is around 40 years of age.  I don’t exactly love all the new lines on my face or the fact that I’m getting more forgetful or that I spend a few hours each day with an ice pack on my back.  However I know that aging is a blessing and I don’t take it for granted.

My birthday was a lot of fun! My favorite gift was a card that Lucas picked out and personalized for me. Never mind the words, he thought it was the most beautiful card in the store and wanted me to have it. We also had a nice dinner out and got rained on at a soccer game which was a lot of fun!

Tomorrow morning is my last infusion and the nurses will come out on Wednesday for my final blood draw and to remove my line. Then it’s sweet freedom for me! I’ll see the doctor the following week to check my progress. I’m hoping and praying that this round of IVs will have done the trick and I’ll be able to find stability again.

Waging War

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It’s time for a health update and this is not the one I thought I would be giving! I had a really great winter, getting only two viruses that I was able to recover from without excessive difficulty. I was so excited as the calendar flipped from March to April, and as we sailed through May I thought for sure I was in the clear. I was dreaming of reaching new heights and regaining some lung function this summer after not battling with a myriad of bugs all winter.

A few weeks ago, however, I started to notice increased shortness of breath. I was keeping up with all my normal activities, but suddenly exercise, yard work, chasing Lucas around, and other things of that nature became more difficult. My seasonal allergies are bad at this time of year so I assumed those allergies were irritating my asthma and I wasn’t too concerned. I headed to a routine pulmonary appointment the last week of May and was surprised when my breathing test revealed that my lung function had dropped from 38% to 34%.

I had no other signs of illness or infection, so my doctor put me on five days of steroids hoping that would reduce the apparent inflammation and get me back on track. I experienced a little reprieve while on the steroids but still wasn’t feeling right, so I contacted him again last week. He put me back on the steroids and added oral antibiotics to address any infection that might be locked up and hiding in my lungs. On Friday I went in for a check and was dismayed to see that my lung function, rather than rebounding, had dropped an additional four points to 30%.

Cystic fibrosis can be puzzling. Most of the time when my lung function drops, it’s because I’m sick and I know it. Usually it starts with a virus and moves to a CF-related secondary infection. My lungs fill with mucus, my airways swell, I struggle to breathe, and I can’t wait to get relief. But this time, I feel pretty decent. I do have the shortness of breath that I mentioned earlier and my lungs have been achy, but overall I have been feeling fine and handling all my regular activities. There was nothing obvious to account for this big drop and that makes it even more unnerving.

My doctor explained that although I wasn’t exhibiting any classic signs of infection, infection is still the number one cause of a drop in lung function. The fact that I wasn’t responding to steroids probably means that although my asthma is always a component of my struggles, it wasn’t the main player in this situation. My doctor ordered a chest x-ray to rule out anything else unexpected, but that came back clear. So we have circled back to the notion of an infection.  This one is hidden, yet waging war on my lungs all the same.

To quote Farmer Boggis, “Dang and blast!” Dang and blast and a lot of other emotions too. A kind of numbness settled in at first. I just couldn’t understand it. Next, frustration. Moments like this shatter any fleeting feeling of security I may dare to believe I have. Getting through the winter unscathed was such a victory–a victory I was reveling in and so grateful for. Yet here I am with my lung function lower than it has ever been before. After a bit the frustration moved aside and the grief set in–waves of sadness swelling up and washing over me as the fears gripped my heart. My lungs are functioning at only 30%. It’s so scary.

Times like this always bring emotional struggle. It’s never just a physical battle. It’s necessary to experience the disappointment, the frustration, and the sadness and face the fears. The emotions never fit into a neat little box. There is no scheduling myself 36 hours to get over it. Friday night was rough but Saturday I felt better. Sunday I woke up in the wee hours of the morning feeling heart-broken. But in the midst of the sadness and frustration I knew it was time to get to work. The tables need to be turned. It is time to wage war against this infection.

This battle has two fronts: the physical and the emotional. Waging war means doing everything in my power. Jaime and I started doing manual percussion on my chest in addition to my normal airway clearance. Monday afternoon I headed to the hospital to get a PICC line placed and I started an IV antibiotic on Tuesday morning. My buddy the treadmill and I have been spending time together each day as currently, brisk walking has been the only thing that makes me cough mucus out.

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Attempting to show this infection who’s boss!

To balance off the treadmill work, I’ve been resting more in the afternoons. These afternoon rests are made possible by the arrival of my sister Julie from Tennessee! She got here Wednesday and will be staying through Monday to help me with chores, play with Lucas, give me moral support, and make a bad situation a heck of a lot better. She’s helping me with the physical aspect of this war but also helping all of us get through it emotionally.

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Aunt Julie is an awesome playmate and Lucas is thanking her with hundreds of hugs and kisses.

Fighting on the emotional front means a few things for me. First of all, I am committed to continue on with as much of my life and daily routines as possible. The PICC line is so great that way. There are some restrictions, but nothing too limiting. I’ve been spending time in my garden. Nature feeds my soul. I’ve been picking Lucas up from school and running an errand with him here and there.

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Lucas, holding the door for his class at pick up!

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A quick stop for some groceries and an orange balloon.

We’ve been keeping up with his school work.

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A special secret school project to thank his teacher.

I’ve continued my normal work schedule.

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Tutoring with my PICC.

I may have to cut back on some of these activities depending on how the next weeks play out, but as long as I have the strength, I want to continue on.

Most importantly, I’m trying to keep my eyes off my circumstances and on my Creator. He is the one who calms my fears and speaks peace and comfort to my heart. While I was on the treadmill the other day, a song came on that I haven’t heard for quite some time. The words were fitting. They go like this:

I will lift my eyes to the Maker
of the mountains I can’t climb
I will lift my eyes to the Calmer
of the oceans raging wild
I will lift my eyes to the Healer
of the hurt I hold inside
I will lift my eyes, lift my eyes to You

From “I Will Lift My Eyes” by Bebo Norman

These troubling circumstances are a lot to handle. These mountains are too high for me and these oceans too rough. The hurt and fear are at times more than I can bear. But none of it is too much for God, and I know my life is safe in His hands. He holds me and watches over my life. And best of all, He has already won the war.

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