100 (and counting!)

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One hundred of anything is usually noteworthy. Like if you owned 100 cats. Or if you live to be 100 years old. Or if you eat 100 hot dogs in one sitting. It’s kind of a big deal!

Last January I bought Betsy a Fitbit. Wearable technology was becoming more and more en vogue and I thought it would be a fun and useful way for her to manage her fitness goals. Collecting data on her sleep patterns, heart rate, and workouts seemed like a useful exercise.  From the beginning Betsy found it quite motivating! The default setting challenges you to log 10,000 steps each day. Apparently the American Heart Association recommends it for “improving health and decreasing the risk of heart disease” (who knew?). Betsy ended up getting me a Fitbit shortly thereafter so I could join in the fun!

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So true.

The thing about having a Fitbit is that it is oddly motivating. At least for Betsy and me. The Fitbit app even gives you a green star when you hit the targets for steps and for two people who were always motivated by extrinsic rewards, if there is a green star up for grabs – we are going for it! We often find ourselves doing laps around the kitchen table at 10 o’clock at night to get the last 1000 steps before bed. Fitbit gives you badges for bigger milestones like lifetime miles and hitting 20,000 steps in one day. In any case, it does the job. Both of us have been more inclined to be active whether it’s hopping on the treadmill or jumping up and down while we are watching TV at night.

This past July, Betsy started a streak of consecutive days with at least 10,000 steps. It started innocently enough, as she strung together a week of green stars. Then a week turned into two. And then Betsy was passing even bigger milestones: 30 days, two months. On October 26, she did it. The streak reached 100 days. And there’s been no sign of letting up! Currently the streak stands at 149 days.

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The day it all began…July 18

There have been days when the 10,000 steps came easier than others. A trip to the park with Lucas including walking there and back home plus all the running around and the ups and downs on the play structure make it pretty easy to hit 10,000 steps. On days when Betsy tutors for 6 hours, it can be really challenging! It’s a testament to her determination that she’s managed to keep the streak going for essentially the last 5 months.

The funny thing is, I had started a streak of my own, three days before Betsy’s current streak began. It flamed out after 18 days. I also had a streak of 47 days going during the months of August and September. Then one night just 87 steps away from the 10,000 target, I fell asleep on the couch at approximately 11:47 PM. I was highly exasperated when I woke up at 12:16 AM and realized what I had done. My current streak is 25 days. If you’ve ever tried it, you know it’s difficult. It’s hard to consistently log those steps. Which makes Betsy’s streak even more remarkable.

After her streak had reached a certain point, Betsy decided that she wasn’t going to break it until she got sick and there was a legitimate reason for her not to be active. A few weeks ago, Betsy came down with a cold. I guess I shouldn’t have been surprised when she decided that she wasn’t that sick and carried on without missing a day of 10,000 steps! Turns out that light exercise can actually boost the immune system. Or at least that’s what Betsy told me when I suggested she take it easy and forget about the Fitbit for a couple of days. 🙂

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Today’s count…she’s nearly there!

Of course there will come a day when Betsy’s streak comes to an end. But it won’t be today! And it won’t be without an extremely good excuse. Like being eaten by a crocodile. 🙂

 

 

A Health and Exercise Update

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Friday, September 9th was clinic day for me. It had been three months since I’d been in to see my CF doctor. That means that for the past three months, I’ve felt good enough that I didn’t need any visits outside of my routine check ups. I really like my doctor and I’m pretty sure he likes me too, but we were seeing way too much of each other over the winter months.

I didn’t feel too nervous leading up to the appointment, not until right before my breathing test. Then sure enough, I felt my heart rate start to rise. There are just so many nerves when it comes to that test. I have felt healthy and strong all summer which is the most important thing, but you just never know what that FEV1 number will be. It’s hard not to be anxious.

In the end I scored a 39%. It would have been great to see a big jump since I’m feeling far stronger and healthier than I did three months ago when I scored 38%, but I’ve been through this enough times to moderate my expectations. It didn’t go down so we’ll call it a success!

Everything else checked out great–my heart rate returned to normal after the test, my oxygen saturation was good, my lungs sounded clear, and my blood pressure was normal. All good signs of health. My doctor was very pleased with how I was doing and was especially happy to hear about my exercise tolerance which he reminded me (again) was just as if not more important than what my FEV1 says. He also brought to my attention that in spite of several illnesses over the winter, my FEV1 stayed stable during and after the illness and didn’t dip like it did with my struggles in the winter of 2015. Stability is a wonderful, wonderful thing when you struggle with a chronic and progressive disease like CF. I am so grateful.

Which brings me to my next update–Operation Lace Up! A few months ago I wrote that I had achieved my goal of running two miles without stopping but I intended to work on diminishing the amount of time it takes me to get through those two miles. At the time I was running them in about 26.5 minutes.  Well…I’m still running them in about 26.5 minutes. I did start working on reducing my speed as planned, but I found that when I pushed myself even a little bit harder, I was getting over tired and not having energy for the other things I wanted to do. I took a step back and reevaluated my goal. I decided to continue to run two miles three times per week at the slower pace and to shoot for increasing my overall level of activity by getting 10,000 steps or more every day (which my Fitbit measures), workout days included. The summer is a great time to be active, and specifically this summer, I had a lot of work I wanted to do on the exterior of the house after being bitten by the Clean Window Perspective bug. I had areas in the yard I wanted to spruce up and Jaime and I decided this was the summer to paint our house.

I’m sure I don’t have to tell you that yard work and painting are physically challenging to someone with reduced lung function, but I love doing these types of jobs! The sides of our house and the perimeter in the back were overgrown with weeds, so I set out to clear the weeds and move rocks from the back to the sides where they could be more useful for weed management. I’m not done yet, but things are shaping up nicely.  Here are a few photos…

 

You maybe wondering what Lucas was up to while I was doing all this work. As you can see, he helped us paint (for a few minutes) but it took some creativity to keep him occupied most of the time. I put up a tent which I filled with books for him, turned on the sprinkler, even filled a snow sled with water. (Think portable bathtub).

Working outdoors (and going back indoors a hundred times to get the other book or bath toy that Lucas wanted) really racked up those steps! So far I have been successful with my goal and am on a 75-day streak of getting 10,000 steps or more. I feel like this increased level of daily activity has improved my energy and stamina which I’m very happy about. Fall is here now and winter is coming, so I’m sure it will be more difficult to keep it up from here on out. But I’m up for the challenge 🙂

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.

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.

Twenty Years

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Jaime and I started dating when we were spring chickens…just 17 years old. The first week in January we celebrated our 20 year anniversary. It’s been 20 years since he worked up the courage to tell me he’d like to hang around with me a little more because he thought I was pretty special.

Twenty years makes me feel ancient!  To ease the pain of aging and to commemorate this grand occasion, Jaime surprised me with a card and a gift.  There were two parts to the gift–first, he made me a CD with songs and included a key as to why he picked those songs. Some of them were selections from 20 years ago. Others were ones we’ve heard together just recently. They all have some meaning for our relationship. My favorite song on the CD is “I’d Pick you Every Time” by Noel Gallagher’s High Flying Birds.  In the explanation, Jaime said that given the chance to chose me again, he would, and it would be the easiest decision ever. That’s high praise and comforting to hear since my health issues have made life difficult for Jaime on many occasions. I’m glad (and relieved) that he doesn’t regret choosing me!

The next part of the gift was something to help me in my health and exercise goals, a Fitbit! I never realized how much I needed a Fitbit until I got one 🙂  A Fitbit is a fitness tracking device.  My particular model (the Charge HR) tracks how many steps I take in a day, how many miles I walk, how many flights of stairs I climb, how many calories I burn, and how many minutes I’m active in day.  It also records exercise, monitors my heart rate, calculates resting heart rate and let’s me know how long I’ve slept each night and what my sleep quality was like. The sleep quality report is done by tracking restless movement, times I awake in the night, and deducting those minutes from my overall time asleep. It comes with preset goals in all these areas, and you can customize it to be reasonable for your lifestyle. As Lucas would say, it’s super cool.

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My weekly report!

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What my heart was up to that day.

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Exercise record including a map of where I walked.

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A poor (albeit long) night’s sleep when I was sick versus a restful night’s sleep.

Besides all the data (which I love) the best thing about the Fitbit is it has gotten me moving.  I only do intense exercise three days per week as that’s all my time and energy will allow.  But I realized there’s no reason I can’t go for a stroll in the evening while Jaime is putting Lucas to bed, or spend 10 minutes walking on the treadmill even on an “off” day. After a few weeks of doing that, I noticed I was feeling stronger on my exercise days. Exciting!

I’d like to say that grand new heights have been reached, but sadly I got a virus two weeks after getting the Fitbit so I haven’t been able to do as much these past weeks.  When I’m all better, I’m hoping to get back at it and see if the extra movement increases my energy and fitness.  I’m feeling optimistic that it will.

I’ll never be as physically fit as I was 20 years ago when I started my relationship with Jaime, but any improvement would be welcome. Besides, I have it on good authority that he loves me just the way I am.

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Then…

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And now.