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.

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CF Suitcase

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It’s been a while since I’ve been by!  First an update. Things are going well! I’ve been feeling great and have kept up with my running. I’m still running two miles three times per week and am slowly trying to reduce my time.  My current best is 26 minutes 33 seconds which I got on the treadmill this week.  I was able to run outside several times due to cooler temps which was great!  Here were my last three outdoor runs:

  
I was intruiged that my time got better by 11 seconds each time. I’m hoping to get my time down to 25 minutes for the two miles. It’s going to take a few weeks but I think I can do it. 

I wear my breathe bracelet every time I run. It reminds me of all those loving people in my corner who give me support, encouragement, and help. It reminds me of Jaime and Lucas and the rest of my family who need me to be as healthy as I can be. It gives me a feeling of solidarity with all those CFers who work hard and struggle to stay healthy. It is motivation to push through the tough moments.

Summer has been great! Lucas is enjoying preschool and I like working during the day rather than in the evenings. Jaime has a break from soccer coaching for the next few months as well so we have more family time than usual.

We are heading out for vacation soon and today I got busy packing. I don’t know anyone that loves packing. Unpacking is even worse! For a CFer, it’s practically impossible to pack light. Since cystic fibrosis doesn’t take a vacation, there are lots of things I need. Take a look at the “extras” that I have to bring along to manage my disease:

  
I have my air compressor and nebulizer kits for breathing treatments, two inhaled medications, my anti-fungal drug, child-strength super sunscreen to combat the photosensitivity caused by the anti-fungal drug, a medication to reduce inflammation, two CF-specific vitamin supplements, digestive enzymes, a cooler for the medications that need refrigeration, two inhalers, an airway clearance device, and supplies for sinus rinses.

The orange and green bands are for my posture exercises. The body’s natural inclination is to roll the shoulders forward to combat shortness of breath, and these exercises are an attempt to keep proper posture in spite of my breathing issues. The jar is full of water kefir (a probiotic drink) which helps me manage the stomach issues associated with CF. (My friend Joyce taught me how to make it and gave me a starter. Click here to see her recipe for water kefir if you’re interested!) I drink a little with each meal and it helps my digestion.

You may notice that I included workout gear and shoes with my “extras.” That’s because as much as I might want a break, I can’t afford to take a week off from exercising if I want to keep my lungs clear. Thankfully the resort where we’re staying has a very nice workout facility and therefore I have no excuses!

CF requires its own suitcase. But I’m grateful that my gear is portable so I can enjoy some time away with my family. I’m all packed…now to survive the nine hour drive with a three and a half year old.  Thank goodness for iPads and orange tiger headphones!