An Update

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Although it’s only been a three weeks, it seems like a lifetime ago that I had my line placed and started my IV antibiotic. Time has been crawling along as I am waiting to be free from this disruption and back to usual life. I’d say things have gone as well as possible. It’s certainly not fun. I’ve been forced to follow an infusion schedule which interrupts my sleep and my plans. The medication itself contributes to a tired feeling and gives me restless nights and bad dreams. I’m only supposed to lift a maximum of five pounds with my right arm which majorly cramps my style. The infected congestion has been very stubborn about leaving my lungs so I’ve had to do unpleasant things in an effort to clear it which has made my back and head unhappy. We had to miss a planned vacation due to the timing of my treatments.

But there have been many blessings as well. My sister came and stayed for eight days! I never get that kind of time with my sisters. Jaime has been able to take some time off this week for a little “staycation.” Having him around has been a treat for both Lucas and I and has allowed me the flexibility to get extra rest. I’ve been going back to bed every morning after my first infusion. Having the ability to do that has made a giant difference in how much strength I’ve had through this ordeal, even if my days haven’t started until 10:30am. And thankfully, my lungs are feeling much better than they did at the start of all this. I didn’t even realize how poorly I’d been breathing until I started breathing better. What a relief!

The better breathing brought with it a rush of adrenaline–the kind of adrenaline that makes me want to do 100 projects.  Jaime has been helping me keep those impulses under control. Last weekend was the first weekend without soccer for Jaime, and being the first-rate husband he is, rather than planning a relaxing weekend for himself, he decided to help me tackle a few yard projects I’ve been dying to do. These are things I knew I couldn’t attempt on my own with a PICC in my arm, but with Jaime’s help and supervision we got a ton of work done.  He only scolded me a few times for lifting things he thought were too heavy or being a little too crazy. We had a few conversations that went something like this:

Jaime: How did those wood chips get spread? Those bags are heavy! Plus you shouldn’t be breathing that stuff in!

Betsy: Well, I didn’t really lift it, I sort of tipped it. And I wore a mask.

Jaime: …

***

Jaime: How did those rocks get over there? They definitely weigh more than five pounds!

Betsy: I have two arms, remember?

Jaime: …

***

Jaime: Don’t you think you should take a break?

Betsy: But it’s really nice out and yard work makes me happy. It’s therapeutic!

Jaime: …

***

Jaime: I have to run an errand.  While I’m gone DO NOT finish this project by yourself!

Betsy: …

***

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This is what we started with…a weedy mess.

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Goodbye weeds, hello wood chips.

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Lucas was a big help…

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Except for when he was chasing butterflies :).

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It turned out really nicely!

Gardening and yard work really are therapeutic for me. I have always loved to be outside. I enjoy growing flowers and veggies.  Being in nature invigorates me and gives me peace–both things I needed during these weeks!

My flowers…

 

 

And vegetables.

I’ve been spending time almost every day exercising on the treadmill or outside as well and have worked up to walking two miles in 27.5 minutes. Lower back pain has made running impossible for me since the fall. It’s frustrating not to be able to jog but my doctor assures me that walking this fast will be just as beneficial. I’ve been able to continue my 10,000 daily steps as well.

I also had my 39th birthday last week! It’s crazy to think that was my last birthday in my 30s. Having cystic fibrosis gives me a different perspective on age, though. I’m so grateful to have made it this far and I’m hoping for many more years. The current predicted median survival age for CF patients is around 40 years of age.  I don’t exactly love all the new lines on my face or the fact that I’m getting more forgetful or that I spend a few hours each day with an ice pack on my back.  However I know that aging is a blessing and I don’t take it for granted.

My birthday was a lot of fun! My favorite gift was a card that Lucas picked out and personalized for me. Never mind the words, he thought it was the most beautiful card in the store and wanted me to have it. We also had a nice dinner out and got rained on at a soccer game which was a lot of fun!

Tomorrow morning is my last infusion and the nurses will come out on Wednesday for my final blood draw and to remove my line. Then it’s sweet freedom for me! I’ll see the doctor the following week to check my progress. I’m hoping and praying that this round of IVs will have done the trick and I’ll be able to find stability again.

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.

Lace Up Fail & Moving On

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Welp. It’s time for an update, and it’s not exactly the one I was hoping to give you four weeks after I planned to re-instituting Operation Lace Up. Unfortunately, just a few days after my last exercise post, I entered the dreaded adjustment phase and this time it was lengthy and difficult. I spent two weeks feeling awful, and a third recovering from feeling awful. Forget working out, I was just trying to get through each day in one piece. I would cough incessantly for several hours upon waking and experience coughing fits on and off throughout the day. The first week I was chilled unless I took a fever-reducer. I was exhausted, sore and short of breath most of the time. My body felt battered and my emotions were pretty beat-up too.

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This sums up how I felt those three weeks (and it made me laugh!).

Thankfully my health started to turn around physically and emotionally and I was feeling more human last Friday when I headed to the doctor for a routine visit. Even though things were better, I had no idea what to expect after the difficulties of the prior weeks. I was hoping my lung function would be stable and the doctor would have some answers for me about why I keep having so much trouble maintaining the benefits of antibiotic therapy once I’m off.

The good news is that my lung function was stable at 38%. It was a relief to see that number given how ill I had felt the weeks prior. I wouldn’t have been surprised if it were far worse than that. Even through all the sicknesses of this winter, my lung function remained around that 38% which is good since last year it dipped to 32%. The bad news is my doctor didn’t have any explanation as to why I keep having these adjustment periods after treatment. He said my symptoms are not considered common or normal even for CF, at least not to the extent that I’m experiencing them. It was discouraging not to have an answer or even a theory, but that is often what life is like with a disease like cystic fibrosis. Sometimes there are no plausible explanations for why things happen (or don’t happen). There’s not much to do but shrug your shoulders and move on.

Moving on means that now that I’m feeling better, it’s time to get back to that exercise! My doctor warned me that it’s going to be mighty difficult at the beginning given what my body has been through these last months. He told me not to get discouraged and to take it slowly. So I’ve decided to do the modified Couch to 5K again, starting next week.  I know that sounds like procrastination, but this week I’m walking on top of increasing my activity level with Lucas in an effort to ease into this. It’s been nice having the energy to be more active with Lucas again, and although unconventional, it’s still great exercise for me. We’ve been ambling around our neighborhood, visiting our local petting farm, playing with friends, and working together in the yard. Spending time with my boy and basking in the great weather we’ve been having is surely medicine for my body and soul.

Conventional exercise will be good medicine for me too, and once I start the Couch to 5K program next week, I should be able to jog two miles without stopping at the end of six weeks.  That’s my revised goal. I’m hoping and praying that regular exercise, good sleep, stability in my health, and some warm, virus-free months will get my lung function headed in the right direction. While I am grateful for that 38%, I don’t want that to be my new baseline.

I headed out for a walk the other day, and what song should pop up in the shuffle but the song Tubthumping by Chumbawamba. You know, “I get knocked down, but I get up again, you’re never gonna keep me down…” It made me smile because Jaime loaded that song on my iPod years ago as a joke when I was nervously restarting exercise after being leveled by an emergency operation. Never mind that the song is about falling over because you’ve had too much to drink, the refrain fits! Hearing it the other day was a good reminder that I’ve been in similar situations before, knocked down as it were by this disease. And God has always given me the strength to get up again and keep going. It’s going to be hard, but it’s time to dust myself off and move on.

Put one foot in front of the other
And soon you’ll be walking ‘cross the floor
Put one foot in front of the other
And soon you’ll be walking out the door

If you want to change your direction
If your time of life is at hand
Well don’t be the rule, be the exception
A good way to start is to stand.

(Who can name that song??) 🙂

Landscaping by Lucas

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Growing up my parents kept a lovely yard–a lush green lawn, pretty flower beds, and nicely trimmed bushes. Perhaps because of this, I actually enjoy doing yard work!  I love spending time outdoors, I like physical activity, and I like the visible results you get from working in the yard.  When Jaime and I bought our first house, we did all the landscaping ourselves. The house was built in 1978 and the bushes had been growing uninhibited since then.  They were giant.  And ugly.  So we pulled them all out, built a little retaining wall, and had a nice little flower garden.

When we moved to our current house in 2008, the yard was in better shape, although it still had some issues. We worked at it the first few years, but then our sweet-but-high-maintenance little boy was born in 2011. I had serious demands on my health and my energy, and our yard beautification efforts went on the back burner.

This summer, all that changed. Lucas had read some books about flower and vegetable gardens and had seen some shows on television where kids were growing and eating fruits and veggies. We had visited our local botanical gardens in the spring. He had it in his head that we needed to plant a flower garden and a vegetable garden and would not be dissuaded. He wouldn’t stop talking about it. And really, it was a great idea!

It was the kick in the pants I needed to get back out there and make the yard look nice again.  And at three and a half, he was at the perfect age to participate and learn. We live in a shady area, and by shady, I mean lots of mature trees.  I didn’t know how a veggie garden would do. I knew I could find some flowers to grow, but most vegetables require full sun.  I figured it couldn’t hurt to try, and with some advice from my neighbor, I selected the west side of the house.  It’s not anywhere near full sun having large trees and the neighbor’s house to contend with, but it gets a few hours of the hottest afternoon sun.

A lot of sweat and salt (I’m a CFer after al!) went into this venture.  First Jaime and I had to attempt to fix the retaining wall in the front which had both settled and been disrupted by a large tree root. That took an entire weekend.  Then there were so many weeds that both front beds needed to be completely overturned. I had to dig out a spot on the side of the house for the veggies and make a border and fence. I went to the city recycle center and shoveled loads of compost and wood chips, by myself, to keep costs down. Jaime would have gladly helped, but he was busy with soccer and the clock was ticking for getting plants into the ground. (Okay, maybe not gladly…he doesn’t share my love of yard work.  But he would have helped since he loves me!)

Oops, I lied.  Lucas came with me to get the wood chips and compost.  Here was one of our loads.  He enjoyed watching me, from the comfort of the car, huff and puff and sweat.

Oops, I lied. Lucas came with me to get the wood chips and compost. Here was one of our loads. He enjoyed watching me (from the comfort of the car) huff and puff and sweat.

It was a great deal of work, but taking on this project got me on the road to good health this summer.  Coming out of an awful winter healthwise, it felt so wonderful and healing to spend time outdoors, digging, shoveling, hauling, planting–panting too, but making visible progress. It felt wonderful to have the strength to work again, and cleansing to breathe deeply in the sweet summer air. Working outdoors helped me to regain stamina and gave me so much satisfaction after spending months behind closed doors unable to do much other than fight against illness.

The flowers and veggies both took off and are doing great. Lucas is one happy camper! He helps me water the garden every day and is happily eating the produce, which is a big deal for a picky eater.  He will munch a little lettuce right out of the garden and has been enjoying kale chips on a regular basis. He likes to pick lettuce and kale and wash it himself, in “his” bathroom without any supervision from Mom. Thankfully it only took me one time to figure out the funny taste was the hand soap he was using 🙂 The cucumbers are ready now and the beans and tomatoes will be ready soon so I’m hoping he will gladly eat those as well. There are carrots, bell peppers and squash that are still growing. I put in a few strawberry plants which are multiplying, and I hope we will get berries on them next year.

From baby garden...

From baby garden…

...to big garden!

…to big garden!

Our beautiful flowers.

Our beautiful flowers.

Veggies!

Veggies!

Watering (with the orange bucket, naturally).

Watering (with an orange bucket, naturally).

Cucumbers!

Cucumbers!

It’s been a rewarding experience for all of us, and we’ve learned a lot. It feels great to grow and eat our own food.  I’m already scheming ways to make the garden larger next summer. Lucas insists that we have potato chips and string cheese growing in our garden as these are his favorite foods. With that in mind, maybe we’ll try potatoes next year. But we just don’t have enough room for a cow.