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

 

 

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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.

A Different Kind of Strength

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Strength is something I think a lot about. Perhaps it’s because at this point in my life and at this stage of my disease, I’m often aware of the strength that I lack. I feel the weakness of my body every day in one way or another. I utter the words “God, give me strength” with more regularity than any other prayer. Sometimes it’s the mundane, like a heavy basket of laundry I have to carry upstairs or a sink of dirty dishes that needs my attention after a long and tiring day. I always pray it before I get on the treadmill and at the inevitable moments when I’m longing to get off the treadmill. I pray it over things more serious, like when I sense God is leading me to do something that I don’t think I’m strong enough to do, or when the future seems uncertain, or when I’m worried about how my disease is affecting Jaime and Lucas. I want to continue to live and to thrive even as I fight this disease. God, give me strength.

So what exactly is this strength that I’m asking for? What am I hoping that God will do for me? That’s what I’ve been pondering lately. What kind of strength does God promise to give?

There are many verses about strength in the Bible. Here are a handful of my favorites:

I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through Christ who gives me strength. ~Philippians 4:13

He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. ~Isaiah 40:29-31

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” ~2 Corinthians 12:9-10

The notion of being strong in the midst of weakness is different from most traditional understandings of strength. I did a Google search of the word “strong” to see what images are associated with the word. There were pictures of muscular men and women, of heavy weights being lifted with ease. There were memes that included words like “brave, fearless, bold.” There were pictures of lions and sharks, clenched fists, super heros…even a picture of ultra strong toilet paper (you know, the kind that never rips or tears or leaves a residue). Strong.

In this season of Lent, I’ve been reflecting on the last hours of Jesus’s life.  I believe we have a lot to learn about strength, a different kind of strength, from Jesus. It has always brought me much comfort that while praying in the garden with His disciples prior to His death, Jesus asked God to take away the suffering that was to come. He asked for a way out. Jesus predicted His own death many times in the gospels. It seemed He knew it was God’s plan for our redemption. Yet in spite of that, when His suffering was at hand, He still pleaded with God to take it away. Although He was a sinless, perfect human, He didn’t want to suffer either. Resisting the pain and wishing for reprieve wasn’t a sign of weakness. I imagine He looks on me with understanding when I ask him to take away my pain, because He felt the same way.

When God didn’t give Him a way out, however, He accepted it, and there was great strength there. Jesus accepted pain that He didn’t deserve and trusted God to redeem it and bring immeasurable good from it. In the hours leading up to His death, Jesus endured all sorts of physical and emotional pain as He was beaten and falsely accused. His closest friends abandoned Him. He had poured out His life to love and serve and heal people, and in turn they abused Him and said all sorts of horrible untruths about Him. They demanded that He be tortured and killed. Yet Jesus looked on them with love and asked His Father to forgive them. He was not bitter in the midst of His suffering.

And while Jesus was on the cross, what incredible mental strength He exhibited. Jesus lost all physical strength while on the cross. He was first beaten and flogged and then nailed on a cross to suffocate to death. All the life drained from His body over the course of the hours of His suffering. We know that as the Son of God He could have summoned the power of legions of angels to remove Him from the cross and annihilate His enemies. But He didn’t. This kind of resolve is unimaginable. Many times have I been in pain or periods of struggle and have thought that I would do anything, anything to make it go away. Jesus had the power to stop his suffering with one word, yet He resolved to endure for our sakes.

He accepted the pain, He endured the suffering without bitterness or hate, He willingly surrendered His power, and He forgave those who had done the unspeakable to Him. And He died. But after three days, Jesus arose from the dead! And here we see the most notable aspect of Jesus’s strength, the strength to overcome. Jesus has overcome! Overcome sin, overcome evil, overcome darkness, overcome death.

I know that because of what Jesus has accomplished on the cross, one day I will go free. Free from this body of disease. Free from the chains that bind me. But while I wait for that day, I pray for strength; the kind of strength that Jesus demonstrated. I ask for strength in the midst of my weakness. Not necessarily the physical power to escape my struggles, but the power to accept them and endure them. I ask for the strength to choose joy and love over bitterness. I ask for the ability to trust that God will redeem any suffering He allows to come my way.  I ask for the strength to live a life worthy of my calling no matter my circumstances.  I ask for the power to overcome. This, I believe, He has promised me.

God, give me strength!

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The Lord is my strength and my shield; my heart trusts in him and I am helped. My heart leaps for joy and I will give thanks to him in song. The Lord is the strength of his people. Psalm 28: 7-8a

 

 

The Glory of Week Three

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Happy New Year a month late! I didn’t intend to let so much time pass between my last post and now, but things got extra busy with the holidays, and after…well, I just felt a little uninspired.  I suppose that sometimes I need a break, even from things that I greatly enjoy. I follow several CF blogs and when someone doesn’t post for weeks on end, I begin to wonder if they are alright. I hope none of you were concerned!

We had a wonderful holiday full of family time, fun, and relaxation. Here’s a few of my favorite photos from Christmas:

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Christmas morning!

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Lucas made Jaime a hat…

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And me a necklace 🙂

The new year started with a bang…in the form of a virus that hit me on January 2. Admittedly, it wasn’t my favorite way to ring in the new year. Unfortunately, Lucas caught my virus and missed a whopping four days of school the second week of the month. This virus made him sicker than he has ever been and seeing that made me very grateful for how well I weathered it.

I wrote in December about my uncommon cold and this virus progressed in the same way, except for one notable difference. My doctor was out of town when I got sick, and the day it became clear that I needed antibiotics was a Sunday. Because of these two factors, I was prescribed antibiotics by an on-call doctor who has never met me. To his credit, he listened carefully to me, allowed me to (respectfully) question his antibiotic choice, and even accepted my personal recommendation for what antibiotics I thought I needed (based on what I guessed my own doctor would have prescribed).  And I must say, I chose well for myself. I started to feel better after just a few doses. The one difference, though, is that this doctor prescribed me three weeks of antibiotics rather than two. I used to always get three weeks, but lately my doctor has been giving me just two weeks of treatment. Two weeks is sufficient to kick the infection, but three weeks is just so wonderful. I simply love week three.

That may sound strange, but week three of antibiotics is the closest thing I get to a vacation from CF. Of course I use that term lightly. I still have to do treatments and therapy every day. I still have to take a handful of pills with each meal. I still have 40% lung function. CF never really takes a break. But by week three of antibiotics, the infection is gone and my chronic levels of bacteria are lower than normal. Because of this, I produce less mucus and cough far less than I usually do, even at my healthiest. My chronic cough is hard on my body in many ways. When it vacates or lessens for a bit, my life becomes easier. Here’s a few things I noticed last week during week three:

Monday: I woke up earlier than usual and still felt rested. I breezed through my treatments in record time because there was so little coughing and so little mucus to clear. Lucas and Jaime hadn’t even left for school and work and I was already through my morning routine! What to do with all my extra time?!

Tuesday: I (almost) made it to my 9:45 am Bible study on time. That. never. happens.

Wednesday: I had so much free time after my speedy treatments that I decided to go for a walk in the morning. And run some errands. I picked up Lucas for school. I decided to run more errands with Lucas. Let’s hear it for energy!

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One errand was to buy a birthday gift for Lucas’s cousin. He can’t wait to give it to her!

Thursday: I had a friend over in the morning. No need to preserve my kid-free time after I knocked out my entire to-do list yesterday! My friend commented on my clean house. That’s right, a clean house at the end of the week!!  I picked Lucas up and after lunch, we decided to put up some new maps we bought for his room. Several hours later all the wall decor in his room was rearranged and re-hung. I had five hours of tutoring that evening, but who needs to rest when it’s week three!

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Lucas is thrilled with his world map and US map (behind). He can start teaching me geography now.

Friday: CF decided to remind me of its presence this morning. In all my productivity yesterday I forgot my digestive enzymes at one meal. I spent the morning feeling sick to my stomach, but I was still able to get out for a brisk walk before I picked up Lucas, because #weekthree.

Saturday: I took my last dose of antibiotics. It felt a bit sad to bid farewell to my security blanket. I knew I would have a few more days of feeling better than usual, and with that in mind, I headed out for a walk. I surprised myself by powering through 2.5 miles in 38 minutes.

Sunday: I decided to do as much as possible to get into good shape before the adjustment phase hits and went out for another walk. I got through three miles in 48 minutes. Not bad!

Monday: Week three was technically over but I still felt great. A former student texted me and asked for an emergency tutoring session before an exam. Tacking on two extra hours of tutoring didn’t seem like a big deal so I agreed. (This just in…she aced her test!)

Tuesday: Week three’s extra energy was still fueling my fire so I decided to write a blog post on top of my Bible study and tutoring today. And here I am 🙂  I’m thankful for week three and for each day of feeling strong and energetic. I’m learning to enjoy these days as a gift rather than focusing on the fact that they won’t last.

Because they won’t. I know that things are going to get more difficult in the next few days. I also know that I’ll get through it and adjust to my normal once again. It will mean longer breathing treatments, earlier nights, later mornings, less productivity, more coughing, and more exhaustion. I’ll have to start over on my running goals and pace myself throughout the day. But it’s still a wonderful life–my own wonderful life. And God always supplies the grace and strength that I need. The glory of week three is behind me but there are blessed and happy days ahead!

Operation Lace Up: An Update

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I’m a bit overdue for an exercise update so I thought I’d better get my act (and a post) together! On June 13th, I restarted a modified Couch to 5K program in an attempt to get myself back into shape after a winter full of illness. (You can read that post here if you missed it). My doctor warned me it would be difficult given what my body had been through this past winter, and he was right.  The first week was a breeze. I only had to run one minute at a time and that was completely doable.  The second week was a bit harder, but not too bad with 90-second running stretches. The third week felt impossible.  I had to run three-minute stretches and for some reason, they were killing me. I would barely make it to the end of the three minutes and when I did, I practically had to stop moving altogether in order to recover. I thought there was no way on earth I’d ever be able to progress to week four which included five minutes of running. It felt much harder than the other two times I’ve gone through the program. I wondered if my running days were over. Then, surprisingly, the next week I was able to do the workout with the five-minute stretches.  And it felt decent! I’m not sure what changed in my body between those two weeks, but I’m grateful it did!

The day of last workout of week four, I was trying to squeeze in a run before a playdate. Due to a series of unfortunate events, we were running late and I needed to get through the run as fast as I could. With that in mind, I decided to run continuously for as long as I could, and I made it a mile and a half! I knew then that I could do the two miles without stopping so I ditched the program, and my next workout ran my two miles.  It was July 13th, exactly one month after beginning the program.  Yay!

I completed the run in 26:38 which is a bit slower than I’d like, so my next goal is to decrease my time to 25 minutes. Since this past week I’ve run at 4.5 mph, my plan is to up that to 4.6 this week, 4.7 next, and hopefully the first week of August, I’ll hit my goal of 4.8 mph which is two miles in 25 minutes.

It’s always discouraging to have health setbacks which require me to start over with my exercise goals. My life with cystic fibrosis will never afford me the opportunity to maintain my health and fitness indefinitely. I know this, yet every time I deal with extended illnesses that hurl me back to a place of weakness, it feels like my hard work has gone down the drain. In reality, that’s not true. The exercise itself is important for my health, but no more important than the ability to show resilience and steadfastness in the face of setbacks–to be able get back up and keep trying. In that sense, my efforts are never wasted, no matter how many times I have to start back at square one. And as an added bonus, working hard and achieving a goal feels great.  Every. Single. Time.

A Clean Window Perspective

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I love summer. It’s my favorite season.  I could do without the humidity, but I love being outside, I feel at my healthiest in the summer, and I love the plethora of activities that warm weather offers.

As you may have read before, I am also one of those weirdos who actually likes yard work, and there’s plenty of that around during this season. In spite of my lung-limiting CF, I enjoy the physical aspect of working outside and I love how a little elbow grease can transform a space in a relatively short period of time. Last year Lucas got me back into gardening and I have enjoyed having flowers to care for again, and now a few vegetable patches and pots too.

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My flowers are gorgeous this year!

Last weekend, my parents came for a visit and my dad helped me get a few of the outside windows cleaned up. There were some big messes that I couldn’t reach due to our friend Bondo Bird and his springtime attempts to break into our bedrooms. My mom was remarking how clean windows can make such a big difference on outlook. Suddenly the world seems bright and clean and full of possibility. I blame those clean windows and my fresh, new outlook on what happened next.

After my parents left, Jaime and I were admiring the sparkling glass when I began to see more clearly what an eyesore the east side of our house was. We have a huge tree on that side which prevents anything but moss and weeds from growing.  Several years back we tried to plant a few things but they mostly died out. At the base of the tree, tons of stubborn, woody weeds were surrounding the trunk. I started to get some ideas about transforming the space, and Jaime remarked that we could spend a few hours out there over the weekend and clean it up a bit if I wanted.

Sunday dawned and that side of the house was on my mind. In the afternoon, Jaime and Lucas headed out to run a few errands and I went out there to measure an area for our compost bins, thinking that Jaime could pick up a few concrete squares while he was out. It was a nice day and the area was shaded, so I decided I’d get started pulling a few weeds. Man oh man, it was hard. I had to throw all of my body weight behind much of what I was pulling out.  We are having a dry spell here in Michigan and the weeds had anchored themselves deeply in the hard soil. A bit later, Jaime and Lucas returned.  Jaime helped me put the concrete blocks down and then he and Lucas left for a soccer game they were attending in town.  Once the vast majority of the weeds were pulled and dug out, I went inside to eat dinner and make a few phone calls.

I probably should have stopped then, but after dinner, I figured I’d go out for just a few more minutes and get started on an idea I had earlier since Jaime and Lucas weren’t around. We have rocks in various places around the yard from past landscaping, and I thought I could use them to edge a flower bed that would improve the look of the area. So I began prying the rocks out of the ground, pulling them over with Lucas’s orange snow sled. I needed to dig a shallow trench to hold the rocks, and I tested it out to see how difficult it would be. That hard earth got in my way again and I had to jump on the shovel to break through it. I got into a rhythm. The area was longer than I realized (30 feet long and 4 feet out from the house), so I needed lots of rocks. I went into the back to gather more. Minutes turned into hours. I was absorbed and happy.

I was finishing up the edging and moving a few lilies over when the boys arrived home. Lucas helped transplant and water in the flowers. I finished up a few last details and surveyed my work.  I really wish I had taken a before picture. It’s just that when I got started, I had no intention of formulating and executing the entire plan. I was pretty thrilled with the end result though!

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A pretty nice flower bed! (Notice those sparkling windows in the background…)

It wasn’t until I went into the house that I realized how long I had been working. The boys left for the grocery store at around 2:00, and I finished up the job around 9:30. I took about an hour to eat dinner and make some phone calls, so all in all, I think I worked about 6.5 hours on this job. I checked my Fitbit and was shocked to see I had logged 16,000 steps and 7 miles for the day, an all-time high for me. At first I felt pretty elated! After all, the area looks about a million times better and I felt healthy and strong the whole time I was out there. It wasn’t as though I felt tired and pushed through the exhaustion, I actually felt strong the whole time.  Then I started to get nervous. Six plus hours of manual labor was probably over-doing it. I was so high on adrenaline and enthused by the progress that it never once occurred to me that I should stop. Oops.

I showered, did my night treatments and got into bed. Then I felt it. A sore throat. I figured it was probably from allergies but it still scared me a little bit. And my muscles were starting to talk to me about what I had put them through. Apparently my legs were opposed to hours of crouching and my neck and back had a few things to say about the weed pulling and rock prying. What was I thinking?! Oh right, I wasn’t thinking. I let myself be controlled by the possibilities and the progress I was making. I was caught up in my clean window perspective and I forgot all about my limitations.

This isn’t the first time this has happened, but it’s the first time in a while. I’ve been much more attentive to my body lately as my CF has pushed its way to the forefront of my life. When I was younger and healthier, this was the way I completed home projects all the time.  I would work and work like a crazy person because I love to get things done. I’m impatient for the end result. I would still operate this way if I could. I think subconsciously I want to forget that I have cystic fibrosis and live life the way I used to sometimes, even if it’s just for an afternoon. The girl I am in my head often doesn’t match the girl I am in a body affected by CF.

The next day was July 4th and I felt surprisingly fine through our family barbecue and pool party. I was tired, but a normal level of tired. July 5th dawned and it hit me. I was so sore that every movement hurt and all day long I was sooo sluggish.

It’s been a week now and I’m fully recovered from that afternoon. I know I need to pay closer attention to my body, but I can’t say I regret what I did. The east side of the house looks great, and I feel proud to have fixed it up all on my own. Forgetting all about my cystic fibrosis for an afternoon–that was pretty great too. It was nice to just live, and work, and accomplish, and be. It was nice to ignore the can’ts and don’ts and shouldn’ts. It was great to experience that energy and stamina again, however short-term. Sometimes I feel like CF has taken away so much of my vitality. But last weekend I was reminded that it’s still there, even if it’s been subdued by this disease. It was good to remember that although my body is weak at times, there’s still plenty of strength there too.  That’s what a clean window perspective will do.

The Adjustment Phase

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It’s unseasonably warm and sunny here today, a glorious 66 degrees. I adore the hope of spring with its promise of new life to come, colors warming their way back into the landscape, balmy air to breathe and a plethora of activities beckoning me out of doors.

I’m especially grateful for this weather today as I’ve entered what I like to call the adjustment phase.  A little over a week ago I finished up a three week round of antibiotics, and a few days later wrapped up my 12 day steroid burst. In theory it’s great to be off those medications. In practice, it’s rough being off those medications. For otherwise healthy people, taking antibiotics cures the infection in your body and when you complete your course, the infection is gone and normal life commences. For me, antibiotics suppress the bacteria that has taken up permanent residence in my lungs allowing me to feel much better, but the infection is never 100% eradicated. I remember a lung culture that was taken after my first round of IV antibioitcs last spring. The antibiotics did such a great job that the only thing that grew out was what the report termed a “rare” or small amount of a common bacteria called Staphylococcus (responsible for the well known Staph infection). The big guns did their job.  One month later, although I wasn’t acutely ill, my lung culture showed numerous amounts of staph and psuedomonas, the other bacteria that grows up in my lungs most of the time. Because of my cystic fibrosis, the conditions in my lungs are such that bacteria thrives there and I cannot ever be completely rid of it.

I have noticed as my condition has progessed, that five days to a week after I go off antibiotics, I go into a phase of increased struggle. The bacteria in my lungs are returning to their chronic levels.  My chronic cough returns, my congestion levels rise, and my chest, back, and abdominal muscles become tight and sore since they seized the opportunity to atrophy with decreased use during treatment (who can blame them!). I often have several days where I feel chilled and feverish even though my body temperature remains normal. I think my body initially puts forward a strong immune response as it readjusts to life without the drugs. It is difficult because I go from feeling better than normal while on antibiotics to feeling worse than normal within a few days as my body finds its footing.  The first week following antibiotics and steroids often still includes some of the side effects of the drugs as well such as poor sleep and stomach issues. It’s hard to deal with those side effects without having the benefit of the drugs.

I always know that this adjustment phase is coming, but it is distressing every time. It is hard physically, but it is also hard emotionally. I get to enjoy an easier, more normal life while on antibiotics and steroids, and that is such a blessing.  We had some really great times the last few weeks–sledding and snow play with Lucas, a family day at the zoo, some messy hikes in the woods, and an uncharacteristically clean and organized house. I had a couple of great runs on the treadmill where I felt strong and invigorated. I felt less restraint, more energy, and more freedom. It is hard to come off those highs and get reaquainted with the lows. It’s hard to trade that feeling of freedom for resistance and restriction.

Today as the sun was shining down on me, the light and warmth felt healing. It reminded me of a verse from Malachi.

But for you who fear my name, the Sun of Righteousness will rise with healing in his wings. And you will go free, leaping with joy like calves let out to pasture. Malachi 4:2

The Sun of Righteousness refers to Jesus, and his wings refer to the fringe of his robe. Jewish people had fringes on their robes which identified them as belonging to God, a representation of their identity. I just read the story of the woman who had suffered for 12 years with a chronic bleeding condition who reached out to touch the fringe of Jesus’s robe and was instantly healed. She seemed to understand that because of his identity as the Son of God, He had the power to heal her, and so she touched what represented who He was. Reading stories like that makes me long for healing, and although I cannot physically touch Jesus’s robe, I often reach out to Him and ask Him to heal me.

And Jesus always answers me with a measure of healing, whether physical, emotional, or spiritual. There are days I breathe easier. There are moments where I feel supernatural strength. There are times where my heart is secure and steadfast against all odds. There are moments when fears and worries flee and I am filled with peace, and times when my trust in Him and His perfect plan are renewed. I know that some day I will be healed completely. It may not be until I reach heaven, but the chains of this disease are temporary. Jesus has brought me through valleys, He has allowed me to walk on heights, He has protected and sustained me and allowed me to say, even on the darkest days, and even during this pesky adjustment phase, “it is well with my soul.”

Ventura Family-65

“But as for you who fear my name, the Sun of Righteousness will rise with healing in his wings. And you will go free, leaping with joy like calves let out to pasture.” Malachi 4:2