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!

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.

Bondo’s Song

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The neighbors who live directly behind us are bird enthusaists.  They have several bird feeders in their yard along with a large bird bath. I see many different types of birds–finches, robins, cardinals, woodpeckers, blue jays and others that come to eat and splash in their little oasis. The neighbors keep their feeders filled and the bird (and squirrel) populations well-fed. It’s nice for us because we get to see all the beautiful birds and hear their cheery songs without any effort on our part.

This spring, one of the birds that has taken up residence in our adjoining backyards is a robin Lucas calls “Bondo.” Bondo must have a few loose screws. For the past several weeks, that bird has been flying into our bedroom windows upstairs, trying to get into the house.  He will perch on a nearby branch and then make 5-10 attempts to get in, banging and flapping against the window and making  a mess of it.  Then he’ll go back to his perch to rest and to sing his song before starting up again. We’ve tried a few different things to get him to stop but so far nothing has worked. Lucas has told me on multiple occasions that someone needs to help that bird.  If only we knew how!

In my current situation, I feel just like Bondo. I’m looking ahead and I can see the place I want to be.  For me it’s the place of normalcy–renewed health and strength, freedom from the bonds of constant illness, freedom from additional medications, and a return to my normal life and activities. I can see it and I move towards it…I’m almost there…boom! I slam into a wall.  A virus. Then a secondary infection. Then another virus. More infection. A bout of pink eye, just for fun.  Another virus. My asthma goes haywire. Spring allergies start up. Well at least cold and flu season is over, right? Wrong!  The worst virus of them all strikes. These things are making a mess of me. I don’t enjoy smacking into these figurative walls any more than I imagine Bondo likes smacking into the literal one.

I keep coming back to the word steadfast that I chose as my focus word for the year. I wish I could say I haven’t been shaken by all this, but that wouldn’t be true. It’s been hard. Very hard. I am so weary of it all. The dictionary defintion of steadfastness is “resolutely firm and unwavering.” The word “resolutely” implies an action and a decision on my part. I can tell you that my heart isn’t steadfast by nature. I get frustrated with myself sometimes, feeling like after all these years it should be easier to react to my adversity with hope and trust, even joy and thankfulness. But it doesn’t feel any easier. It still takes a firm decision on my part to shift my gaze away from my circumstances and onto God, to push my fears aside, and to trust Him. To believe Him when He says He works all things together for my good, and that He loves me with an everlasting love. It takes resolve to be patient in suffering and persistant in prayer. And it’s not just a one-time resolution. Sometimes it’s a many-times-a-day resolution.

Loose screws or not, Bondo Bird has something to teach me. What keeps him coming back to that window?  He must expect that one of these times he’s going to get in, and it will be worth all the effort. And even in the midst of his struggle, he keeps right on singing his sweet song. That’s just what I need to do–stay hopeful and patiently persevere through this hard time, expecting that I will break through. And in the midst of my struggle, I need to keep a song in my heart.

This morning just the song I need came to my mind, a hymn from childhood I haven’t thought of in ages. It goes like this:

Oh Love that will not let me go, I rest my weary soul in Thee; I give Thee back the life I owe, that in Thine ocean depths its flow may richer, fuller be.

O Light that followest all my way, I yield my flickering torch to Thee; my heart restores its borrowed ray, that in Thy sunshine’s blaze its day may brighter, fairer be.

O Joy that seekest me through pain, I cannot close my heart to Thee; I trace the rainbow through the rain, and feel the promise is not vain that morn shall tearless be.

O Cross that liftest up my head, I dare not ask to fly from Thee; I lay in dust, life’s glory dead, and from the ground there blossoms red, life that shall endless be.

~O Love That Will Not Let Me Go, George Matheson, 1882

I am held by God, and there is rest for my weary soul. There is light for my way, and joy in the midst of my struggles. There are rainbows to trace through the rain. There is joy and a promise of better days. I accept my struggles believing that through them flow blessings, and richness, and fullness of life. That’s my song.

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Nothing That Has Happened So Far Has Been Anything We Could Control

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Just when the end of cold and flu season was within sight. Just when the weather was finally starting to feel springlike. Just when we thought things were returning to normal.

Sick again.

We had spent a really fun, long weekend in Chicago a couple of weeks ago and Betsy held up great and we all had a blast. About a week after getting back, Lucas started coughing. Betsy and I were both trying to act unconcerned, but the truth is, we were. We were literally (because Lucas is still learning to cover his mouth when he coughs) and figuratively, holding our breaths, hoping that Betsy wouldn’t catch whatever bug that had befallen Lucas. And sure enough, by the weekend Betsy was down for the count. At first it was just a sore throat and sinus pressure. Then those initial symptoms gave way to respiratory difficulties. Betsy told me she noticed a change in her breathing.

Sigh.

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Spring, finally.

Of course that unleashed a whole wave of questions and concerns. Should we give Betsy’s body some time to fight off the virus on its own? When do we need call the doctor if at all? Would he want to prescribe antibiotics? Would he want Betsy to go on IV antibiotics (please no please no please no please no please no)? It’s a balancing act. For obvious reasons, we don’t want Betsy to take antibiotics haphazardly because we want her body to be responsive to them when she really needs them. On the other hand, we don’t want her to naively refrain from taking them if she really does need them, causing a minor infection to turn into something far worse.

In the end, she did call the doctor and he did prescribe a pretty lightweight oral antibiotic which he thinks will be enough to get Betsy back on her feet. She didn’t dodge the bullet completely but it could have been worse.

I nicked the title of this post from a song by Australian psych rockers Tame Impala (PSA: If you’ve never listened to them before, you should definitely check them out! My favorite album is Lonerism). I couldn’t think of a better way to sum up how I have been feeling about this latest bout with illness. We’ve been washing our hands, we’ve been trying to regulate Betsy’s activity, we’ve been making sure she has been getting as much sleep as possible and doing everything to minimize her exposure to the outside world, especially as she was coming off the steroids which we knew were probably suppressing her immune system. What else could we have done?

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Wild impala.

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Tame Impala.

One answer is nothing. Admittedly, it’s not one that I like. Probably the thing I struggle with the most is the feeling of helplessness. By nature I’m the sort of person that wants to try to prevent and protect. I wouldn’t say I’m paranoid (although Betsy might disagree) but I’m definitely über alert to any danger. When Lucas was learning to walk I remember carefully inspecting all of our furniture looking for dangerous corners that he might tumble into so that we could cover them with pads and cushions. I think subconsciously, I take a similar approach to Betsy’s health. Is there someone sniffling in the row behind us at church? Have any of her students been sick in the last month?

But alas, not everything can be prevented. And that leaves me feeling distressed and annoyed. I came across a benediction that appears at the end of 2 Thessalonians the other day:

Now may the LORD of peace himself give you peace at all times in every way.

I’ve been trying to keep this in mind. Because what I really need at times like this is peace. As much as I would like it to be otherwise, there are many things that are out of my control. There are things I can’t prevent. But I trust that Betsy’s health is in God’s hands. And knowing that gives me peace.

 

A Windy Weekend

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Last weekend we got out of town and spent four days in the windy city of Chicago! It felt great to vacate for a bit. I’ve been on steroids for just over three weeks now. Steroids suppress the body’s immune response, and given the tough time I’ve had this year with staying healthy, I have been making a concerted effort to avoid situations where I might be exposed to germs. Translated, I’ve barely left the house. A weekend away was just what we needed!

We left midday on Friday and took the train. Lucas was very excited and spent the first hour looking out the window and all the farms and forests we passed by. Did I say Lucas? I meant Gnocchi the cat (a character on Curious George and Lucas’s current favorite alter ego).  “Gnocchi” was meowing pretty loudly while we were waiting for the train, but thankfully for the sake of the passengers around us, he quieted down once we boarded.

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“Gnocchi”

Our conversation for the first hour went something like this:

L: Look Mommy! A forest!  Do bears live in those woods?

B: Probably not, bears usually live further north.

L: But I want them to live in there!

B: I guess it’s possible.

L: Ok, because I think they do. Mommy, look at the farm!  Do chickens peck people?

B: No, chickens peck on the ground for food.

L: But I want them to peck people!

B: I guess it’s possible….

L: Ok, because I think they do.

[conversation repeats nonstop with various scenarios for 30 minutes]

B: Lucas, do you want to play on the iPad?

L: No, I want to talk about farms and forests!

B: ………….

We arrived in time to get dinner and relax in the hotel for the evening. Saturday morning I was feeling pretty tired from the previous day’s travel (and conversations) so I stayed back while the boys went to the park. While they were gone I did nothing. Really. I laid on the bed and stared out the window. It was pretty great 🙂  Sometimes I feel sad when I’m too sick or tired to be a part of activities, but that morning I was feeling really thankful. Sure, if I had my way, I’d love to be healthy and energetic enough never to have to stay back. But there’s always the flip side of the coin.  Jaime and Lucas have a really special and close relationship, in part because of all the times that Jaime has taken care of Lucas without me, and the countless nights they’ve snuggled up together so I could sleep uninterrupted in a dark, quiet room, and all the adventures they go on to give me some rest time at home. It makes me happy to see their bond. What made Lucas happy that morning was walking by the river, running around like a little maniac, and getting a pigeon to eat out of his hand!

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Walking by the river.

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Joy! Energy! Enthusiasm!

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Lucas feeding his pigeon friends.

Other highlights of the weekend included reading stacks of books and building with Legos at the library, visiting a zoo and farm with my sister and her family, a brief stop at the Magnificent Mile, and a full day spent at Chicago Children’s Museum. Lucas also successfully ate food from three different restaurants. That is what we like to call progress!

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I am so grateful that despite not feeling 100% back to baseline, I was able to go on this trip and withstand the rigors of the weekend. According to my Fitbit, I walked 18 miles and took nearly 42,000 steps during those four days.  I thank God for giving me the needed strength (and coffee)!

Yesterday I headed back to my CF clinic to check in with my doctor. My FEV1 was still at 37%, the same as when I went in three weeks ago. I would have been thrilled to see a higher number, but regardless, I am feeling so much better than I was three weeks ago. I’m sleeping better, coughing less, and having fewer headaches. The doctor said that the virus I was dealing with was strong and nasty, and of course in my situation, complicated by my CF and asthma. It will take more time to recover fully, but because of the progress I’ve made, I’m doing a final steroid taper and will be off in five days. Although I’m grateful for steroids, I’m very ready to be off. The flip side of that coin is pesky side effects like sleep interruptions, anxious feelings, and mood swings to name a few. (Jaime and Lucas are probably ready for me to be off too!) I hope and pray that the spring (if it ever gets here), will bring with it an increase in health, stamina, and lung function.

In the meantime I’m counting my blessings–like energy for a fun weekend away, my chattery four-year old, and a helpful husband to name a few.

A Snowy Day Update

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It’s been a while since I’ve posted a health update and as we’re snowed in today, I thought I’d take advantage of some unexpected down time!

Overall this winter has been better than last.  Last year I had two serious illnesses that took me down for weeks and resulted in lung function loss. This winter hasn’t been the greatest either as this is our first cold and flu season with Lucas in preschool and many viruses have traveled via Lucas into our home.  We’ve all been sick several times, Lucas and Jaime getting by with a few days of light symptoms. I have required oral antibiotics twice, but at least once, I was able to get through the virus before it caused a secondary lung infection.  That is a wonderful, wonderful thing, and knowing my body can sometimes heal without additional intervention brings me hope. Thankfully none of my illnesses have been seriously debilitating or hit me with the viciousness that last year’s bugs did. I’m very grateful!

I am currently finishing up a three week round of oral antibiotics. I saw some improvement in my condition after about five days on the medications, but after two weeks, I wasn’t where I needed to be. I was still struggling with a tight cough, and high levels of inflammation were preventing me from clearing some congestion left over from the infection that I could feel deep down in my lungs.  I contacted my doctor this weekend and he prescribed a round of oral steriods to help open things up. It has been working and I’m optimistic that this will do the trick.  And you’d never know it today with all this snow, but spring is coming! I will be so relieved once we get out of this relentless cold and flu season.

Today was an awesome snow day. Temperatures were comfortably in the 30s and so Lucas and I headed outside to play. The snow was excellent for building!  We got pretty wet but we built a nifty little snow fox which Lucas named Bubbles (because Bubbles is the first thing that comes to mind when you think fox, right?!). Then we threw snowballs at the trees, made tracks, and had a blast sledding.  We got some pretty good speed on our little hill and Lucas enjoyed employing the “roll out” method he learned at school after we flew into the street a few times. I was super thankful for the steroids after the 100th time trudging up our driveway in the deep snow.  Our driveway is pretty short but the incline is no joke!  Lucas is fighting off a cold right now so he agreed it was time to go in after a mere two hours due to the slightest reduction in energy. You gotta love the silver lining!

Lucas also wanted to try some hot cocoa when we got in! His willingness to try new things has increased so much over the past several months. I knew he was unlikely to actually drink it, so I made him a very small cup.  He stuck his tongue in exactly four times and said, “Mommy, I love it!  But that’ll be enough.” Typical Lucas 🙂

I hope you enjoy some pictures of our snow day. Until next time!

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Lucas and Bubbles

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This tree gives Jaime nightmares (he’s afraid it’s going to fall on our garage) but the weighed down snow-covered branches made an awesome little snow canopy! 

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Under our canopy.

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Sledding!

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Lucas’s first cup of hot cocoa 🙂

 

 

A Spring-y Update

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Spring has finally sprung here in Michigan!  [Insert a loud and dramatic sigh of relief].  What a winter this was!  I had a nasty, debilitating virus and CF exacerbation in December followed by three additional viruses over the course of what were some of the coldest months (weather-wise) of my life. Talk about feeling cooped up! My lungs have been aching for a breath of warm, fresh air.

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Lucas’s first ever snowman (who he named “Dusty”) is now…

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…a memory. See you next winter, Dusty!

My latest virus hit right after I wrote my last update.  I had a sinus infection and a sore throat and this time, pink eye.  Lovely. I went to a primary care physician who prescribed drops for the pink eye and told me my other symptoms were viral.  She did encourage me to follow-up with my pulmonary specialist, however, and I just happened to have a routine appointment on the books for the very next day.

After I got to the appointment and took my breathing test, I knew I was in trouble. My FEV1 was down 13 points.  What a shock!  I knew I was struggling and hadn’t felt great in weeks, but I never would have guessed my lung function had dropped so drastically. My CF doctor put me on oral antibiotics immediately and scheduled another appointment for just four days later.  The antibiotics took care of my acute sinus and throat symptoms within 36 hours (so maybe they weren’t viral after all?) but I continued to struggle with noticeable wheezing and inflammation in my lungs. When my FEV1 showed no improvement four days later, I started on steroids.

I’m now a week into the steroids and a week and a half into the antibiotics and am feeling pretty good.  I’m a little cloudy–the steroids make it very difficult to get a good night’s sleep.  But it feels great to be free from troublesome levels of congestion and inflammation, and although I’m not exactly breathing easy, I’m breathing easier. I’ve felt well enough to be out and about with Lucas, enjoying this warmer spring weather.

Sticks, snow, puddles, mud, rainboots...it's a little boy's heaven out there.

Sticks, melting snow, puddles, mud, rainboots…it’s a little boy’s heaven out there.

Here comes the sun!  (And yes, Jaime and Lucas picked out those boots for me :))

Here comes the sun! (And yes, Jaime and Lucas picked out those *bright* boots for me :))

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Swinging at the park!

Now for an update on Operation Up Scale and Lace Up. I have stayed true to my committment to gain weight and have put on three pounds so far.  I haven’t gained an ounce since I started the antibiotics as they always upset my stomach, but my weight is holding steady.  I know I’ll get those last two pounds on once I finish out the medication. The MyFitnessPal application has been an awesome help in this endeavor again.  It keeps me on track with my calorie goals.

I got back on the treadmill too!  Thankfully I never got terribly ill with this virus or bacterial infection or whatever it was, so once I started on the steroids and antibiotics I recovered enough within a few days to have energy to exercise.  Last week I walked two miles at a 15 minute mile pace three times.  This week I started back on the couch to 5K program and alternated jogging one minute and walking a minute and a half for the two miles.  It’s going well! (Initially I typed cough to 5K. Is that a Freudian slip or what?!)

I have another pulmonary appointment in two weeks and I am hoping to see a big jump in the right direction on my FEV1. Even a little hop in the right direction would be encouraging. I have to remind myself over and over that healing takes time, and to choose patience over panic.

Happy Spring everyone!