Great Strides-Breathe4Betsy

A few weeks ago, some dear friends of ours approached us about forming a team to walk in this year’s local Great Strides walk. They’ve named the team Breathe4Betsy and we are working to gain members and raise money for the walk!

Here is an explanation of Great Strides from the Cystic Fibrosis Foundation’s website:

Great Strides is the Cystic Fibrosis Foundation’s largest national fundraising event. Each year, more than 125,000 people participate in hundreds of walks across the country to support the Foundation’s mission to cure cystic fibrosis. The funds raised from Great Strides helps provide people with CF the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment and ensuring access to high-quality, specialized care.

Great Strides continues to gain momentum, as do our research efforts and the progress we’ve made in the search for a cure. The CF Foundation has raised and invested hundreds of millions of dollars to support the development of new CF drugs and therapies.

Jaime and I have participated in this walk on and off over the years as individuals and are excited and honored by the formation of this team!  If you are local and you can join us, check out Breathe4Betsy’s Team Page. We’d love to have you on the team. This year’s walk is Saturday, May 14th at 11:00am at Gallup Park in Ann Arbor. You can also join as a virtual walker if you want to raise funds but can’t make the event. If you would like to support my fundraising efforts, please check out My Personal Page.

Because I love including photos in my blog posts, I’ve added these pictures of Jaime, Lucas and I walking at Nichols Arboretum this past fall (see the connection?!) Gallup park should be equally beautiful in May! The Great Strides walk is a 5K though, so with that in mind, I’ll definitely be wearing different shoes.

Lucas always takes us off the beaten path…in more ways than one.

Thank you for your support! We hope and pray that CF will soon stand for “Cure Found.”

 

Spring, Steroids, Streams & Sticks

Yesterday morning I told Lucas it was the first day of spring. “It’s SPRING?  I’m so excited!” he exclaimed and started dancing all around my bedroom. “Daddy, Daddy, it’s SPRING!” he yelled. He climbed up on my bed and peeked out the window.  “Can we plant our flowers today?” he asked. “It looks warm!”

We’re going to have to wait another month or two to plant our flowers here in Michigan.  It was not warm yesterday in spite of the sunshine (unless you consider the 30s and 40s warm). Regardless, I share Lucas’s enthusiasm for spring! He’s most excited about flowers and veggies.  I’m most excited for cold and flu season to end.

I was hoping I’d be feeling normal by now and through the adjustment phase that I experienced after getting off antibiotic and steroid treatment for an infection I had in February. Unfortunately, things never improved, and after about 10 days of feeling sick, I landed back at the doctor last Thursday. I had been having frequent coughing fits, was sleeping poorly, and was feeling exhausted, sore, and short of breath most of the time. My FEV1 was down only one point from where it was at my February appointment, but in Feburary it was down six points due to the infection I had. So although it was a big relief to see it hadn’t plummeted any further, it’s not where it should be. I didn’t have signs of a secondary infection, and the doctor concluded that the main culprit for my troubles was my asthma, likely kicked up by yet another virus. Friday I started back on steroids to address the asthma.  My body will heal from the virus on its own, but that will take some time.

I’m not sure yet how long I will be on steroids. I’ve definitely seen improvement but still have a ways to go. My doctor is having me check in with him regularly and is adjusting my dosage based on my progress. I’m looking foward to feeling like me again soon. Hopefully by the time it’s warm enough to plant our gardens I’ll be healthy and strong and cold and flu season and all this illness will be a distant memory.

Steroids are a great blessing when you need them but have lots of side effects. Thankfully the worst side effects aren’t a problem when you take them for a short period of time. I do, however, have trouble falling asleep at a decent time at night and alternate between moments of having jittery energy and periods where an exhaustion washes over me and my brain feels foggy. I felt tired this weekend so we played quietly at home. Lucas is very into nature.  Currently forests and bodies of water along with their native animals are of greatest interest to him.  He created a forest out of a tree house toy and played with that for a while at home. When he was done being calm and quiet, Jaime took him out in search of a real forest and stream adventure and left me at home to rest.

Lucas’s forest tree house. He has created an imaginary animal called the Sharp Pig that lives in dens and under fallen trees in the forest (in case the pink pig was confusing).

A real fallen tree!

He was probably digging for a Bumpadoe…another imaginary animal which he informs us is a furry amphibian.

Sticks, streams, dirt…a little boy’s paradise!

Joy!

I was sad to miss the adventure but hearing about it and seeing these pictures brought me lots of joy. Lucas also brought me a stick from the forest so I wouldn’t be completely left out. It’s funny how a soggy, dirty old stick can be a precious, heart-warming gift. I’m thankful he thinks of me and wants to include me even when I’m sidelined by my health. I’m hoping with the arrival of spring and the help of these steroids, next time I’ll be digging in the mud right along with my boys 🙂

That night,  Jaime was snuggling in bed with Lucas as he was falling asleep. At one point Lucas rolled over and whispered, “Daddy, I’m really happy.” Then he closed his eyes and went to sleep. Oh the beauty of joy mixed with peace and contentment! It blessed me to hear those words from my four year old. These frequent illnesses have been challenging for all of us, but there’s a hope that fills our hearts and we are reminded over and over that we have so many things to be grateful for. Today I’m thankful for joy, peace, and contentment in the midst of struggle.

And for spring, steriods, streams and sticks 🙂

The Adjustment Phase

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.”

“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