An Update and a Non-Update

Standard

Hi All, I’m stopping by for a quick update.  I have some good news to share about Operation Up Scale…a week into calorie counting I’ve gained a pound.  Yay!  I haven’t loved eating all those extra calories.  There were plenty of times this past week where I had to take a deep breath and force myself to finish those last few bites, but I did it.  I’m relieved the weight is returning and I’m hoping within the next month I might be back to my target weight.

I wish I could give you an update on Operation Lace Up, but alas, I cannot.  The very same day I posted that I was working on these goals again, I got sick. It was Saturday and my throat hurt so bad I headed into the clinic at my doctor’s office to have a strep test.  Other CFers may understand what I mean when I say I was really, really hoping it was strep.  I know, that sounds crazy, right? The thing is, strep is easy to cure with a few days of antibiotics.  The alternative, a virus, is much harder for my body because there are no medications available to give me a hand.

But…it wasn’t strep.  My doctor sent me home with strict instructions to rest and sleep and drink a lot of fluids.  She warned me that the viruses she had been seeing were starting out with sore throats and sinus issues and landing in the chest three or four days in. She said that they were hitting [otherwise healthy] people hard. You can imagine the trepidation I felt at hearing those words!  Please, not a repeat of December!

About 24 hours into the virus I noticed a few key differences. First of all, I never got a fever.  Second, my appetite wasn’t nearly as affected as it usually is when I get sick.  My throat hurt like crazy, my sinuses weren’t great and I was very tired, but that’s it.

I’m six days in now and feeling decent, almost normal. I’m still more tired than usual and am trying to be careful about my energy.  Because of that, I haven’t been on the treadmill since last Friday, hence no update on Operation Lace Up.  I’m hoping to feel strong enough to get back to it this weekend.

Although that goal was temporarily sidelined I’m feeling extremely encouraged and so very grateful that I didn’t get too sick with this virus or require medical intervention.  As Lucas would say, Hoooorayyyy!!

Hooray!!

Hooray!!

Things are looking up around here! (Get it?)

Advertisements

Operation Up Scale and Lace Up…Take Two

Standard

As you know if you’ve been following along, I’ve been struggling with my health these past few months.  I’ve lost weight and I haven’t been consistent with exercise since I got sick in December.  This week I decided it was time to get back on the scale and back on the treadmill.  It was time to see exactly what I was dealing with and start working my way back to “normal” again.

Well, sadly, it looks like in both areas I’m back to square one.

[Gasp], Not square one!!

[Gasp], Not square one!!

Yes, square one.  *Sigh.  I have lost all of the 5-6 pounds I gained during “Operation Up Scale” last spring and summer. This is not terribly surprising. I need to consume more calories than the average person simply because I burn more calories breathing and talking and walking around because of the strain cystic fibrosis puts on my body.  I also am unable to absorb all the nutrients in my food. Because of both of these factors, when I get sick (and I’ve had both a respiratory illness and the stomach flu these past two months), I am unable to come close to meeting my body’s calorie demands, and the weight falls off rather quickly.

When I stepped back on the treadmill, I found that I could only walk at 3.5 miles per hour for 25 minutes which totaled 1.5 miles. Right before I got sick in December, I was jogging 2 miles in 25 minutes (at about 4.7 miles per hour) thanks to “Operation Lace Up“.  This big drop confirmed what I have been feeling, that my lungs are struggling.  Even when I started my modified couch to 5K program last July, I was able to start running and walking at 4 miles per hour.  Upon reflection, I realized that at that time, I had a much higher base level of fitness.  With the nice spring and summer weather, I had spent several months outside playing with Lucas and had logged many miles of walking by pushing him in his stroller to the parks, to the bus stop, to Jaime’s office and the local museums. This time I’m getting off the couch for real.  (Hmmm, the couch. So much more comfy than the treadmill.)

Now I’d like to tell you that these setbacks didn’t faze me but the truth is, I was pretty discouraged and upset at first, especially about the exercise. It took me several conversations with my husband, and several conversations with God to find peace with it. It’s hard when you work hard to achieve something and then have to start over due to circumstances outside of your control. On one hand, cystic fibrosis makes these falls harder and faster than they would otherwise be, and the journey back to health is longer and more difficult. But on the other hand, this is just life and these types of setbacks happen to everyone. So after about 18 hours of feeling disheartened and dealing with those negative voices telling me I’d probably never get back to my previous level of fitness and health, I screwed up my courage and got to work.

First I got back on MyFitnessPal and started tracking my calories.  I set my goal at 3200 calories again but cut myself a little bit of slack this week.  I’m still not feeling 100% so my appetite is reduced.  I did notice that I was able to get closer to my goal each day and yesterday I finally hit the target.

I got back on the treadmill the very next day, and the day after that, and the day after that.  I was even able to push up my speed to 3.7 (baby steps).  When I did Operation Lace Up last summer, I only worked out three times per week, but I think this time I’m going to try to walk almost every day.  Because my activity level is so much lower due to this freezing cold and snowy winter, walking more is the only way I can get the base level of fitness I’m going to need if I want to try the running again.  I’ve decided just to focus on walking for a few weeks and once that gets easier, I’ll try that modified couch to 5K again and hopefully work back up to running the two miles.

So!  Here we are, Operation Up Scale and Operation Lace Up, take two.  Hopefully the shock and dismay I felt at being back at square one will turn to joy…

photo (4)

and laughter…

photo (5)

when I meet these two goals again.  (I think I can, I think I can, I think I can…)

Stability

Standard

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.

IMG_4935

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.

Keep-calm-and-carry-on-scan

 

Operation Up Scale

Standard

I’ve been thinking lately about setting some goals for myself.  But sometimes when I decide I need to make some changes, my eyes get too big.  I start thinking of all the areas in my life where I could be doing better and I decide to tackle them all at once.  That’s a good recipe for failure.

I also set unattainable goals sometimes. For instance, after my big CF health crisis in 2006/2007, I set a goal to get my FEV1 back into the 60s.  I had previously spent lots of years in the 60s and low 70s, and I really wanted to get back there.  I worked very hard to achieve that goal.  I rested and slept, I reduced my stress level, I ate healthy foods and I gained back the weight I lost during the extended illness.  I worked up to jogging, I lifted weights, I did all my treatments and therapies, and I took all my medications.  But I never made it back into the 60s.  It couldn’t be done.  Rather than feeling like a failure for not getting there, I should have felt like a success for doing everything in my power.

And so this time I want to set achievable goals.  Instead of tackling them all right now, I’ve decided to address one at a time.  Once I meet one goal or at least get a good start on it, I’m going to try to add in another.  Manageable is the key, right?

I’m going to start with gaining a few pounds.  Many CF patients have low body weight because thick mucus obstructs the pancreas and blocks the body’s natural enzymes needed for breaking down food and absorbing nutrients.  Taking digestive enzymes helps, but they don’t completely solve the problem.  Also, living with reduced lung function and constantly fighting off infections uses lots of energy and burns lots of calories.  Because of this, people with cystic fibrosis need 20-50% more calories than the average person.

I recently changed my diet which has helped me to feel better overall.  (I’m working on a post about it right now).  One of the changes I made was cutting out dairy.  Dairy has links to asthma, congestion, and is somewhat difficult to digest.  Within a few weeks of eliminating it from my diet I had a less congestion and more energy.  But eliminating dairy has contributed to some weight loss.  I relied on dairy products for easy calories.  It’s time to find a way to gain the weight back and keep it on sans whole milk, cheese, yogurt, and shakes.

Before you start wishing to be me, know that it’s neither fun nor easy for me to gain weight.  Because my caloric needs are already higher than average it takes a lot of effort to actually gain weight.  I have to think about food all day, remember to eat many snacks, eat beyond when I feel full, and count calories.  It’s a pain.  Some people dream of being able to eat whatever they want.  That usually translates to junk food of some sort.  But eating unhealthy foods only complicates other health issues and so I certainly don’t want to gain weight that way.  I need to give my body foods that fuel it and enhance its performance, not foods that cause digestive issues, inflammation, and sluggishness.

So why all the focus on weight?  Healthy body weight is linked to higher lung function and the ability to fight off infections for CFers.  Having a healthy weight also strengthens the immune system.  Plus, when I’m at my optimal weight, I feel more energetic.

So on Monday I’m starting Operation Up Scale.  I’d like to see the scale go up about five pounds.  I’m starting to stock my cupboards.

image

I’ll keep you posted on how I’m doing.  I’m hoping that blogging about it will keep me accountable.  So here’s to a weightier me!