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

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

 

 

A Little Help From Aunt Sheri

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I was still in college when my sister Sheri gave me a gift. She had been a special education teacher for more than five years in a Michigan town before the stresses of the job combined with her CF struggles became too taxing on her body. The district in which she taught was a low-income area that housed a prison, and some of her students had parents or other relatives in that prison. The needs were great. Sheri’s heart was big and she was the perfect one to love and nurture these children while helping them learn.

Because her district didn’t have the resources that some wealthier areas have, Sheri invested a great deal of her own money and time into making materials to use with her students. Her creativity really shone through in a lot of what she made, and when she left teaching, she brought some of it home with her. She gave it all to me while I was in college preparing for my own teaching career. I was able to use her creations in my own classrooms and later, with my tutoring students as well.

This fall I acquired a new student…an extra special young five named Lucas. At conferences, his teacher mentioned that he could use additional practice with fine motor activities such as writing his letters and cutting. For several years now, Lucas has been asking when he would be old enough to be a tutoring student and this was the perfect opportunity to make extra practice at home exciting for him! I put together a program which included muscle strengthening and fine motor practice but also tasks I knew would be fun and easy for him to make it an enjoyable time for both of us. When I broke the news to him he was thrilled and proud to be old enough to come to my office like a big kid. And I was excited too! It’s been lots of fun to have these two loves of mine intersect. Lucas has been an enthusiastic participant.

I was also excited to take out some of Sheri’s creations that had been dormant for a while. I told Lucas all about how she had been a teacher and how she had made a lot of the tools we were using to learn. We keep a picture of her nearby while we work–a Christmas ornament she made with her students one year. I even found some fun animal pencils she and I had made together once and the cat pencil has become Lucas’s official tutoring pencil.

I wish that Lucas could have known Sheri and that she could have known him. Someday that wish will come true. But for now, I’m so grateful that she can still be part of his life, even in this small way, and that we can remember her together as we learn.

img_0985Lucas was one excited boy on the first day of tutoring! He even uses the outdoor entrance like my other students do. After all, he wants it to be official!

Coloring, cutting, matching, tracing. It’s all good.

Here we’re using some of Aunt Sheri’s materials! Lucas is holding her special pencil and ornament, working on more matching activities that she put together, and jumping on vinyl letters she cut out and labeled to blend sounds into words.

img_1535Today in tutoring we learned how to draw a cat. Perhaps Lucas didn’t inherit Sheri’s natural artistic abilities, but I think they’re great and I know she would have liked them too. 🙂

Sheri, thanks for the help! Your legacy lives on.

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!

100 (and counting!)

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One hundred of anything is usually noteworthy. Like if you owned 100 cats. Or if you live to be 100 years old. Or if you eat 100 hot dogs in one sitting. It’s kind of a big deal!

Last January I bought Betsy a Fitbit. Wearable technology was becoming more and more en vogue and I thought it would be a fun and useful way for her to manage her fitness goals. Collecting data on her sleep patterns, heart rate, and workouts seemed like a useful exercise.  From the beginning Betsy found it quite motivating! The default setting challenges you to log 10,000 steps each day. Apparently the American Heart Association recommends it for “improving health and decreasing the risk of heart disease” (who knew?). Betsy ended up getting me a Fitbit shortly thereafter so I could join in the fun!

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So true.

The thing about having a Fitbit is that it is oddly motivating. At least for Betsy and me. The Fitbit app even gives you a green star when you hit the targets for steps and for two people who were always motivated by extrinsic rewards, if there is a green star up for grabs – we are going for it! We often find ourselves doing laps around the kitchen table at 10 o’clock at night to get the last 1000 steps before bed. Fitbit gives you badges for bigger milestones like lifetime miles and hitting 20,000 steps in one day. In any case, it does the job. Both of us have been more inclined to be active whether it’s hopping on the treadmill or jumping up and down while we are watching TV at night.

This past July, Betsy started a streak of consecutive days with at least 10,000 steps. It started innocently enough, as she strung together a week of green stars. Then a week turned into two. And then Betsy was passing even bigger milestones: 30 days, two months. On October 26, she did it. The streak reached 100 days. And there’s been no sign of letting up! Currently the streak stands at 149 days.

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The day it all began…July 18

There have been days when the 10,000 steps came easier than others. A trip to the park with Lucas including walking there and back home plus all the running around and the ups and downs on the play structure make it pretty easy to hit 10,000 steps. On days when Betsy tutors for 6 hours, it can be really challenging! It’s a testament to her determination that she’s managed to keep the streak going for essentially the last 5 months.

The funny thing is, I had started a streak of my own, three days before Betsy’s current streak began. It flamed out after 18 days. I also had a streak of 47 days going during the months of August and September. Then one night just 87 steps away from the 10,000 target, I fell asleep on the couch at approximately 11:47 PM. I was highly exasperated when I woke up at 12:16 AM and realized what I had done. My current streak is 25 days. If you’ve ever tried it, you know it’s difficult. It’s hard to consistently log those steps. Which makes Betsy’s streak even more remarkable.

After her streak had reached a certain point, Betsy decided that she wasn’t going to break it until she got sick and there was a legitimate reason for her not to be active. A few weeks ago, Betsy came down with a cold. I guess I shouldn’t have been surprised when she decided that she wasn’t that sick and carried on without missing a day of 10,000 steps! Turns out that light exercise can actually boost the immune system. Or at least that’s what Betsy told me when I suggested she take it easy and forget about the Fitbit for a couple of days. 🙂

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Today’s count…she’s nearly there!

Of course there will come a day when Betsy’s streak comes to an end. But it won’t be today! And it won’t be without an extremely good excuse. Like being eaten by a crocodile. 🙂

 

 

The Uncommon Cold

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Cold and flu season. The bane of my existence.  Okay, maybe that’s a bit of an exaggeration, but the viruses lurking around every corner this time of year stir up a bit of panic in those of us with chronic lung disease.

The past few years I’ve gotten my first cold just before the holidays, in December. This year, I got my first cold at the end of October, and I was less than enthusiastic about its early appearance. It started on a Thursday evening while I was tutoring. My throat began to feel a little dry, a little sore, a little unwell. The panic set in. Calm down, it’s just allergies, I told myself. But I had a nagging suspicion that was confirmed when I woke up the next morning with all the classic symptoms of the common cold.

Those first days of a cold cause a great deal of stress for me. CFers can never just “relax” and let the virus run its course. For the average person, a cold means a short period of annoying, uncomfortable symptoms, followed by the return of normal life. The common cold usually lasts 7-10 days. If you are a CFer reading this, I’m pretty sure you just laughed or rolled your eyes. I don’t remember the last time a cold lasted 7-10 days for me. For CFers, the common cold means annoying, uncomfortable symptoms, but it also includes the threat of a much more serious infection that can result in weeks of illness. Sometimes these illnesses can result in the permanent loss of lung function. The common cold is plain scary.

My cold lasted, from that first scratchy feeling in my throat, to the day I woke up feeling like myself again, exactly 38 days. Over five weeks. Here’s an outline of how my [un]common cold progressed:

Day 1: Uh oh…sore throat…the feeling of impending doom sets in. My poor husband is subjected to a great deal of my angst which is bubbling over as I see the worst case scenario playing out in my mind and sadly bid farewell to my six-month, illness-free streak.

Days 2-8: I sludge through the cold symptoms while trying to keep tabs on the health of my lungs. I worry. I ask Jaime 100 times a day if he thinks my cough sounds okay. It does. I try to relax.

Day 9: The virus hits my lungs. Each breath is a cacophony of various wheezes and hums and vibrations. I call the doctor and start on two oral antibiotics.

Days 10-16: I wait for my cough to improve. Still waiting. “Mommy, why are you spitting your fungus in the toilet?” Lucas asks. He tries to join me but he’s only got saliva in there. No fungus (or mucus) for him. I laugh and thank God for five-year olds. Still waiting on that cough. C’mon antibiotics, you can do it!

Day 17: My cough beings to improve. The Hallelujah Chorus plays in my mind. I try to join in. Yeah, my cough isn’t all the way better yet. I leave it to the angels and keep quiet.

Day 22: I can finally say my cough is back to normal. But this is already my last day of antibiotics. I take my last dose and hope it’s not too soon. Bye-bye security blanket.

Days 23-28: These are blessed days of feeling good. But I know what’s coming…

Day 29: The Adjustment Phase hits.

Days 30-38: I cough and cough and cough and cough (and cough). I have many wonderful friends, but this week, Motrin is my best friend. I need it to get through the day. I remind myself that this will pass. It will.

Day 39: It did! I wake up and realize I can make it through the day without Motrin! My cough is quieting. My muscles are less sore. I don’t have a headache. I’m through my cold and ready to start another illness-free streak. There’s that Hallelujah chorus again! I join in. It still sounds better in my head, so I decide to save that one for the shower.

The good news is that all things considered, this cold was relatively mild and manageable. I was able to function fairly well through it and I’m sitting here today, six weeks out, feeling good. I’m so very grateful for that! Perhaps an early cold this year will mean less illnesses overall this season. A girl can dream.

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Kisses from this little guy always make me feel better when I’m sick.

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Kisses from this big guy help a lot, too.