Operation Lace Up Update (3)

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It’s time for a brief update on Operation Lace Up.  Things are going well!  I’ve have been able to keep up with running three times per week.  It’s been ten weeks since I started working on this goal, and I’ve only missed one workout.  It hasn’t been too difficult to find the time to run, mostly because I’ve devised a schedule to keep myself going. Every Monday I do a workout exchange with a friend.  I go to her house and we take turns jogging while our kids play.  On Wednesdays, I run on the treadmill in my basement.  I would rather run outdoors, but I can set Lucas up with the iPad on the bed in the guest room (which is within earshot of the treadmill), and he will play independently for a half hour. I can then get my workout done during the day while I have the most energy.

It hardly seems fair that Lucas gets to do this while I toil away on the treadmill ;)

It hardly seems fair that Lucas gets to relax while I toil away on the treadmill!

Lucas has been insisting that I take Rosita (from Sesame Street) with me while I run.  Because I know he could walk down the stairs at any moment and catch me running without her, I stuff her in the cup holder.  She makes pretty decent company.

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Rosita looks pretty relaxed too!

The third run of the week I complete on a weekend day when Jaime is home, usually on Saturday.  I chose Monday, Wednesday, and Saturday because I don’t work on those days (I mean I don’t tutor on those days, moms work all the time 😉 ) which means I can put extra energy towards exercising.

I haven’t consciously tried to increase my speed yet, but it has been improving on its own.  I’d like to run the two miles in 25 minutes (two minutes faster than my initial 27 minute time). Here is my fastest run so far:

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I’m almost there!

Running isn’t easy or enjoyable at this stage of my cystic fibrosis.  It takes a lot of effort to breathe through it. But it has gotten easier.  I don’t feel like I’m fighting for each breath anymore. There have even been a few runs where I’ve even had enough steam left to pick up the pace at the end.  Not sprint, mind you, but increase my speed just a little.  Even though I can no longer say I love running, it sure feels great to be doing this for my health!

Stability

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I had my three month checkup at the CF clinic last week and am happy to report that things went well!  My doctor was pleased with my weight gain and happy that I have been able to work up to running two miles. My lungs sounded clear, the oxygen saturation in my blood was normal at 98%, the bacteria in my lungs are susceptible to a variety of oral antibiotics (meaning there are several options for treatment if I get sick), my blood sugar was normal (no CF-related diabetes!) and my FEV1 was up two points to 49% of predicted. I’ve worked hard not to get too caught up in the FEV1 score because it can be a fickle fiend.  But, honestly, I was thrilled to see it go up.  It felt like a pat on the back after several months of working hard on my weight and exercise goals.

Lucas and Jaime both accompanied me to the doctor. Lucas has traditionally been very shy and quiet during my appointments but he was neither of those this visit. He kept loudly proclaiming his desire to stand on the white paper on the exam table.  He said over and over, “The doctor look in MY mouth now.  The doctor look in MY ears!”  I have to hand it to his pediatrician.  She is wonderful, apparently so wonderful that Lucas wants to be examined.  Thankfully the doctor seemed charmed. But I might have to find a babysitter for him next time I go.

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Look at that face…he knows he’s a little rascal!

Overall my doctor said that my health is very stable. Stability is a wonderful thing when you have a progressive disease.  Of course I would love to see a big improvement.  I would love to see my FEV1 jump 10 points.  Occasionally CFers see jumps like that, but that’s usually if there has been a dip due to a serious infection. Big gains can also happen if someone has not been taking good care of themselves and they begin to make healthier choices, like being faithful with breathing treatments, airway clearance, and exercise. Some patients have seen significant improvements in lung function by taking a medication called Kalydeco which treats CF at the cellular level.  However, it is only effective for those who have a gating mutation, and neither of my CF mutations are, making this drug ineffective for me.

Thankfully I haven’t been acutely ill for a long time.  My last round of oral antibiotics was seven months ago.  I am not perfect with my treatments but I do make them a priority.  I’m active with Lucas and exercising three days a week.  I eat healthy foods to boost my immune system and to combat inflammation and infection.  I try hard to get enough sleep.  I’m hanging out around 50% lung function with those healthy habits already in place. Without a miracle or a medical breakthrough, I’m unlikely to see a big jump, but I’m stable.  I’ve adjusted to life at this level with these challenges.

Stability means that if new treatments become available, I will hopefully be in a position to benefit from them.  There is so much research going on right now involving treatments and medications that combat the basic defect of CF.  My doctor is optimistic about what might become available in the next ten years.  I hope and pray that there will be a breakthrough in my lifetime.

For now, it’s about keeping on!  I’m thankful for a good doctor’s report and for those two points on my FEV1.  I’m thankful for stability in my health.  I’m thankful that God gives me the strength to live and thrive in spite of my challenges.  I’m thankful for a rascally three year old to make me laugh through my appointment.  And I’m thankful for the bright hope that fills my heart.

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Marking Ten Years

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It was ten years ago today that my sister Sheri died.  Ten years.  It’s so hard to believe all that time has passed.  So much has happened during those years.  My mind can’t really fathom that Sheri hasn’t been here–that she hasn’t been a part of it all.  I suppose that is because when you love someone deeply, they become a part of you.  She has not been here in body, but she has always been near in my thoughts, in my dreams, and in my heart.  I have taken her along with me.

There are times when missing her causes me acute pain.  I still weep for her.  I wish I could hear her infectious laugh, hold her small frame, kiss her smooth, warm cheek.  I miss her cards and update letters, her handmade gifts, her phone calls and emails.  I wonder what she would think or do in certain situations.  I wonder what advice she would give.  But reminders of her also bring me joy.  I see her face in the face of my sisters–in the way one moves her mouth, or the mannerisms of another.  I see her when I look at my own reflection–curly eyelashes and curved fingernails.   I see things that remind me of her–wild flowers, pencil drawings, quilts and crafts.  I think of her when I score a great bargain and when I shop at the fabric store.

Sheri was smart, assertive, and determined.  I always smirk when I hear CFers talk about 100% compliance. They usually mean doing all of the treatments that their doctors want them to do.  And for sure, Sheri did all her treatments.  But she was not exactly compliant.  She wasn’t afraid to challenge any doctor, nurse or therapist when she felt she was not getting the quality of care she needed.  She insisted on explanations rather than simple answers.  She educated herself on treatments and medications and she stood up for herself when need be.  In my mind’s eye, I can still see all five feet, 90-some pounds of her on the warpath.  It makes me smile.

Sheri pursued her goals as long as she had the strength rather than allowing an uncertain future to stimie her.  She graduated from college with a special education degree and taught for more than five years before deciding to retire.  Even after she stopped working she never stopped investing in people, making a positive difference in so many lives.  She got married and enjoyed being a wife and creating a happy home for herself and her husband.  She certainly had hard times due to her cystic fibrosis and she experienced many losses.  There were days she had trouble accepting her situation. However she always pulled through those hard times with her faith in tact.  As she said, “I have resolved to make cystic fibrosis a positive factor.  So I refuse to succumb to bitterness or defeat, lest the doctor’s predictions prove correct and I live a miserable, abbreviated existence.”

And she was successful.  Because when I think of her, mostly I remember the joy she exuded.  She was bright, bubbly, and cheerful.  She was fun to be with and had a great sense of humor.  Her struggles helped shape her in a positive way.  They made her compassionate and understanding; they helped her relate to others who were hurting.  Today as I mark the tenth anniversary of her exit from this earth and her entrance into heaven, I feel deeply grateful.  I’m grateful to have known her.  I’m grateful to have loved her.  I’m grateful to have been loved by her.  I’m grateful to have her example to follow. She is part of the fabric of my being.  She has taken hold of eternal life now, and so we miss her greatly.  But someday we will be together again.

“Be still, my soul! The hour is hastening on when we shall be forever with the Lord; when disappointment, grief, and fear are gone, sorrow forgot, love’s purest joys restored.  Be still, my soul! When change and tears are past, all safe and blessed we shall meet at last.”

(Be Still My Soul, verse four, by Catharina von Schlege)

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