Waging War

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.

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.

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.

Lucas, holding the door for his class at pick up!

A quick stop for some groceries and an orange balloon.

We’ve been keeping up with his school work.

A special secret school project to thank his teacher.

I’ve continued my normal work schedule.

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.