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.”

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“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

A Crowded Corner

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

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

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

What blessed assurance!

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

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

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

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

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

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

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An Update and a First

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It’s update time, and boy do I wish I could tell you I was footloose, fancy-free, and feeling fabulous.  (Too much alliteration?) But alas, that has not been my story these past few months.  I told you in my last update post about a month ago that I was on oral antibiotics and steroids after contracting my fourth virus for the winter, and was beginning to feel much better. I did feel great while I was on those treatments and for a week or so once I was off.  I then entered what I thought was an adjustment phase where I didn’t feel as good.  My body had to readjust to fighting the colonized bacteria in my lungs and inflammation without the help of the medications.  I was still running on the treadmill and even got to the point where I could do a combination of jogging and walking for two miles in 28 minutes.  The exercise definitely got harder once the medications were ended but I still thought I had made some sizeable gains as I was tolerating a much higher level of activity.

Imagine my shock when at my follow-up pulmonary appointment last Thursday my breathing test (FEV1) was down an additional three points from where it was when I was sick. I knew I wouldn’t be back to the 49 I was at before virus number one in December, but I thought surely, surely I had made some progress.  I couldn’t believe that it was even lower. My doctor was surprised as well, enough so that he scheduled a repeat test just four days later to make sure it wasn’t a fluke.  I wasn’t showing any signs of an overt infection–my temperature and oxygen saturation were normal, my lung sounded clear, my congestion was unchanged in color, texture, and quantity, my exercise tolerance was up, and my weight was up.

Over the weekend I did notice the advent of some increased cystic fibrosis symptoms–more coughing, more wheezing, more windedness, more tiredness, but I still thought for sure the test was wrong.  On Monday I had my retest and the FEV1 dropped another point, for a total loss of 17 points. Sometimes you just can’t win.

After a frustrating winter, this latest development was incredibly demoralizing. I have worked hard exercising and eating right and trying to take good care of myself, but those FEV1 numbers just don’t want to budge. My doctor was very concerned as well. We simply cannot leave a number in the low 30s alone, so it is time to get a bit more aggressive.  I had a chest x-ray which didn’t show anything unexpected, and will have a CT scan early next week.  I’m back on steroids, just a low dose this time, and for the first time, I started IV antibiotics.

I know, the other CFers out there are probably scratching their heads.  I’m aware that most people with cystic fibrosis have their first round of IV antibiotics well before age 36, but that hasn’t been my experience.  Because I didn’t struggle much with my lungs until my late 20s, I have not required frequent antibiotic usage and oral antibiotics have always been very effective. However this time, the oral antibiotics didn’t make a lasting difference, so my doctor felt that using IVs, which are more potent, was a must as we aim to get my lung function back to baseline. Although it’s disappointing to have this first, I’m very grateful for a stronger treatment option and feel blessed to have made it thus far without needing them.

Yesterday I got a picc line placed.  Picc stands for “peripherally inserted central catheter” and is a thin, flexible line that runs through a vein in my arm towards my heart. It allows me to do my IV antibiotics at home. Last evening the visiting nurse came to teach me how to administer the drugs and I will be infusing them for the next two weeks.  It will be a bit rigorous as the medications need to be infused on a strict schedule, and I will have four infusions a day.  One set of infusions is back to back which will mean an hour and a half of being attached to a pole. This schedule will mean also missed hours of sleep.  But I hope and pray that this will get me back on the upswing.

Lucas checking out my picc line.

Lucas checking out my picc line.

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First he “fixed” the tubing (with his flashlight)…

...then my line!

…then my line!

I was a bit concerned how these treatments would affect Lucas. He is a pretty sensitive little guy.  So far it is going well.  He seems to think the line is some type of accessory (it is purple after all!) and he told me he likes it. He has asked me many times today if I’m okay and if the sick is gone, and has been showering me with hugs and kisses and love, so I know he’s aware. There have been a few signs of stress but overall he’s doing great.  And I’m not gonna lie, the extra love and affection has really helped me get through this day.

Yesterday as I was getting my line placed, the nurse asked me if I’d like to listen to any music on Pandora.  I asked for some soothing classical music.  Just as they were about to make the incision and place the line, a piano rendition of the hymn Great is Thy Faithfulness started playing on the radio. The title of my blog, Bright Hope, comes from verse four of this hymn (written by Thomas Chrisholm in 1923):

Pardon for sin and a peace that endureth,
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!

This perfectly timed reminder from God of His faithfulness was just what I needed. I have been struggling to remain hopeful as this current fight has seemed long and hard. I feel at times that I am pushing against an impenetrable, immovable force. The feeling of defeat is poignant when those FEV1 numbers drop and drop without any clear explanation, and none of my efforts seem to matter.

But I have experienced God’s faithfulness over and over in my life. I know this current struggle will be no exception. He does give me strength, and hope.  His mercies are new every morning. I don’t know exactly how this will all turn out, but I’m hoping and praying for complete healing.

My sweet little lover boy. (Yes, my IV is hanging from a lamp...but that's a story for another day).

My sweet little lover boy keeping me company during my infusion.

In the meantime, you can be sure I won’t give up. The “blessings all mine” are so worth fighting for.

Great is Thy faithfulness! Great is Thy faithfulness!
Morning by morning new mercies I see;
All I have needed Thy hand hath provided—
Great is Thy faithfulness, Lord, unto me!

Silencing the Negative Voices

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Shhhhhhhhhhhh

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Although I’m generally a positive person, I’ve been struggling with negative thoughts these past few days–struggling to maintain a positive attitude in the midst of a challenging few months.  I’m working on a blog post which I hope to publish soon about positive things I’ve seen in my life as a result of cystic fibrosis. So perhaps it is fitting and right that in the midst of that, I’m being confronted with the negative and discouraging as well. After all, I don’t want to seem phony or naive.

The negativity is coming after a few months of not feeling great. I got that doozie of a virus in December and although I recovered from it, I have yet to feel like I’ve found a solid footing or hit my stride again health-wise.  A lot of it has to do with timing.  I finished my antibiotics right as the holidays hit and between celebrations, some traveling that we just now finished up, and some unusually full weeks, I haven’t gotten back into a good routine.  I haven’t been able to exercise regularly, I haven’t gotten my weight back up (having the stomach flu last weekend didn’t help that), and I haven’t had consistent good sleep. I’ve been coughing more and struggling with my asthma.  I have yet to regain the feeling of strength and resiliency I had been enjoying.

A couple of nights ago I was feeling headachy, sore and feverish thanks to that stomach flu.  I had been coughing long and hard during my evening breathing treatment which made me vomit and I hurt all over. As I was getting into bed, I said to Jaime, “You know what, sometimes I just want it all to go away.”  Not just the stomach flu, but everything about my body which makes “simple” illnesses like stomach flu or the common cold so troublesome for me.  The frustration was overwhelming me.  I know that God has taught me many good things through cystic fibrosis.  But there are days and there are nights where I just want it all to go away. Sayonara CF, I don’t want you.

I’ve noticed that this negativity has crept into my thoughts elsewhere.  I read on someone else’s blog how they don’t let CF get in the way of their life, and I thought, “That’s great, but eventually you will have no choice in the matter.” I may have even rolled my eyes and laughed a bitter laugh. I mean, I was that person. My CF didn’t interfere.  But that can all change in the blink of an eye.

For the past several nights I have been waking up a lot, having night sweats and not sleeping well.  I think it’s just my body dealing with the stomach virus and lack of food and energy from not being able to eat.  Maybe some of it is due to the anxiety that goes hand in hand with these negative voices in my head.  As I was laying there trying to relax and stave off the coughing that was threatening to undo the rest of the night, I thought, “My health is only going to get worse from here.”  Good grief! What a depressing thought.

Even as I’m sharing these thoughts, they make me uncomfortable.  This pessimistic person, this is not really who I am. I do have hope–bright hope!  Hope in the Lord and in His plan for me, and hope that new treatments will be developed that will help me and extend my life. But I admit, sometimes I get sick and tired of having a good attitude. Sometimes I want to wallow in the mud and give in to discouragement.  Sometimes, try as I may, I can’t push the bad thoughts away.  I don’t want to learn and grow.  I just want to feel good.

So what’s a girl to do?  How do I get rid of those negative voices?  Two things come to mind.  The first comes from Hebrews 12:3 which says, “Consider Him [Jesus] who endured such opposition from sinners, so that you will not grow weary and lose heart.”  Growing weary and losing heart perfectly sums up this past week. But considering Jesus helps in so many ways. It helps because I remember that I have someone walking alongside me who understands how I feel, and who knows me and my struggles intimately. I remember that He gives me the strength I need for one day at a time, whether it be a good day or a bad day. I remember that He faced more opposition in His lifetime than I will ever have to face. And I remember that He will bring good out of my struggle.

Considering Jesus also fills me with gratitude and gratitude breaks through negativity like nothing else. Jesus has given me the ultimate gift–life in Him and the promise of new life one day. New life without pain.  But He has also opened the floodgates and poured so many blessings into my life right now.  My basic needs have always been met.  I am surrounded by family and friends whom I love and who love me.  I’ve been given vocation and ministry. My life has purpose. I have a husband and a son who make every breath worth fighting for. When I count my blessings, I realize that they far outweigh my struggles.  The cross I have been asked to bear is manageable, and I am equipped to handle it.

I am hopeful; I am thankful.

Sayonara negative voices, I don’t want you.