Don’t wait for the light at the end of the tunnel- light it yourself.

I saw a meme I really liked today…

“I stopped waiting for the light at the end of the tunnel and lit that b**** up myself”; this is the quote  surmounted to the meme… ha!

For people with Cystic Fibrosis, or at least for me with mine,  I don’t know how much more truth you can tag to such a statement..

I’m 26 now.  I never got my lung function back up to 108% at the end of that month that I said I would. And guess what? It is okay. My most recent lung function rang in at 100%- that was two weeks ago.. Seven to eight more percentage points to go.

How have I been managing? I hold myself accountable to do my afflovest, nebulizers, and exercise every day. I chose to use medical equipment/ engage in habits that compliment what my personality entails; this helps me reach my adherence goals and ultimately, desired pulmonary function test results.

Medical Equipment

Since I was young, I have been an active/ on the go type of person. That being said, seems to make sense for me to have portable equipment! This change has helped me significantly, acquiring the afflovest and battery powered proAir nebulizer. I never knew such items were available, I had to do my own research and ask my doctors for prescriptions, which I obtained.

This portable nebulizer was not the one I wanted, the one I found online, but it was what I was offered- life is not perfect, so I take what I can get and do my best. Here is me with my doggie, Tobi ❤ Now I can do treatments while I play with him outside.

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Exercise

I have been doing less cardio and more lifting/ yoga, though today I did participate in “body attack” at Gold’s Gym which incorporated much cardio. From time to time I will stop in for a cycle class too..

After a personal poll and some thanks to Maxwell McGuire plus Chris Kvam, two friends with Cystic Fibrosis, Body Pump at Gold’s Gyms slowly became a constant/ my favorite class.

Gold’s Gym classes helped me become more organized and reliable regarding work out sessions. I know that everyday I can count on someone to be at the gym, expecting my participation, counting on me to “show up”. I have a hand full or a little more, to choose from for exercise groups, daily: body pump, cycle, body flow, body step, body attack, body combat, Barre, zumba, and of course hot vinyasa yoga. My gym has dedicated instructors here for me, Monday through Sunday, excited to work out with me, and encouraging me to grow. This makes me happy to exercise and easy to comply.

It also helps for me to chat with my friends that have Cystic Fibrosis about my exercise and treatment encounters. We have a special understanding of each other’s goals and how to achieve them/ encourage one another (mostly them encouraging me because I am so new to exacerbations and “climbing up the slope”). Having them here for me is a blessing.

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Treatment Adherence

Just as I said before, I needed the right tools to help me stay on track with doing my vest and nebulizing my hypertonic saline, Tobi, and pulmozyme. Now that I have the portable equipment, this is easy. Most often, with my sister on maternity leave, I leave my equipment at work. I do all of my treatments within 8-9 hours. Typically, I just do all of my treatments back to back. This is what works for ME. Maybe not everyone, but for me it does. I like to get it done in the most productive and speedily was as possible, this means, starting early morning with my antibiotics, ending my day with my antibiotic, and doing the hypertonics/pulmozymes/vest sessions in between the antibiotic time. In a perfect world, people would do their Tobi twelve hours apart twice a day; mine is done eight hours apart and my doctor told me that is okay. It is okay because it means it will get done and it will stay getting done in the long run.

In all sincerity, everyone knows that nobody does their treatment perfectly or the way they’re supposed to all of the time… We accept this. I accept it, and I do what works for me.

Follow Up

So, I have been attending the gym daily for a good while now; over a month? Doing all of my treatments… Getting my routine down and challenging myself.. Playing auntie to my newborn baby nephew, Parker ❤ Something I will mention in my next post.

I have a scheduled pulmonary function test and check up for mid April at Children’s Hospital in Washington, DC… We will see what is in store for me!

Keep lighting your tunnel! Please feel free to comment, ask questions, and or whatever else you would like to do.. I am here 🙂 Thanks for reading.

***I also want to thank Tom Nunnally for empathizing with me on my most recent post and starting his blog back up. See Tom’s blog at georgethomasweb.wordpress.com for his inspiring story.

Best,

Morgan Fogle

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1: The case of Kassie Case. 2: “I don’t feel like exercising!”

Who is Kassandra Case?

“Kassie” is a J.Crew loving, coffee shop going, crossfiting, 21 year old woman. Kassie also has Cystic Fibrosis.

Here she is below, training with crossfit.

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Kassandra Case, 21 year old female (Cystic Fibrosis patient), gained nearly 16% of her lung function back in competitive crossfit and dedicated exercise routines.
Diagnosed at birth, sports have always played a significant role in Kassie’s life- particularly gymnastics; she has traveled near and far for competitions. Like most of us, at some point during adulthood, exercise falls to the wayside and we “get out of shape”. For people with Cystic Fibrosis, this can be devastating. Post high school graduation (where I hear it occur most often), Kassie’s lung function dropped to 19%. She knew she needed to get her life back, she also knew where to start.

Kassie says, “I remembered how healthy I was when I was in gymnastics. I knew I could not go back to gymnastics, so I had to find the adult version of it. My friend took me to a gym to get started, little by little. I did not want to take my oxygen with me, but I did anyways. I would literally go for 20-30 minutes at a time at first. I would be so worn out… But, eventually, I started building my body to where I was able to do more. There was a crossfit gym next door to my gym. I had always wanted to do crossfit! One of my friends saw how interested I was and took me in.  I fell I love with it from day one! It was super hard for me and still is, not going to lie, but I gained most of my lung function back by doing crossfit.” Kassie’s lung function went from a staggering 19% to 36%.

Kassie’s Disciplined Diet

Now, I must also add- I read Kassie’s dieting regime and I still think “how can someone be SO self disciplined?!?”… Please, if you could give me only a smidgen of this that you possess- it is a virtue… Her diet looks like this: no dairy, no bread, no soy, no processed meats, no processed foodsyes fresh fruit, vegetables, and oats. For drink? Only water and some juice. Kassie also manages CF related diabetes and a seizure condition (hence the no soy). All of her protein comes from nuts, quinoa, and oatmeal. How much water does she drink regularly? Her body weight in ounces. Her doctor advised her that using this diet will aid in rebuilding lung cells; Kassie says she feels the difference.

Here is Kassie, being beautiful per usual (and very fashionable!)

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Follow Kassie’s Instagram for inspiration at Kassandra_hcase! …and if viewers are lucky- maybe some styling points too!

Kassie mentions, she could not have achieved all that she has on her own, though. She is surrounded by a very strong support group: family, friends, a Cyster (best girl friend that has Cystic Fibrosis), her care team, fitness coaches, and other CFers (fellow CF patients). “I have a wonderful social worker at my CF doctor’s office, she is a huge supporter of me. The whole doctor’s office is a huge support to me. My family is supper supportive and are there for me through everything. I haven’t been through anything alone due to them being by my side. …On Instagram I interact with other CFers and we all just show each other support and love through there as well!” -Kassie

According to Kassie, CF patients should not let their “abnormality” keep them from achieving whatever it is they desire to do: “Don’t be ashamed to wear oxygen, use our equipment out in public, or to wear masks where people find it unnecessary.” “…you may get sick and you will have difficulties, but if you have the will and drive you can always get better. I want to show them (patients of CF) that things might be hard at first, but with time it will get better.” “In the end, our lives will be affected by the things we do and don’t do!” -Kassie on helping patients experiences with CF relate to one another.

Kassie’s take on CF right now? “Soon it will be cured. The people who have it now will remember it and stay strong individuals because of it. Our future generations will not know what CF is. To CFers, do not give up, our time is coming!”

Here are a few more photos of Ms. Kassie Case.

Would you like to try Kassie’s favorite work out routine?

Do this exercise 3-5 times in a row, per her suggestion:

-5 calories on an air bike (opens and works the lungs)

-10 kettle bell swings (strengthens muscles and lats around your lungs)

-15 to 20 abmat crunches (strong core= strong and happy body)

Thank you Kassie!

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“I don’t feel like exercising!”

There is a fine line between listening to your body and not pushing yourself to your full potential..

This week’s reoccurring conversation… hypothetically:

Me: I really could use your help right now, can’t we skip the next episode of The Office for some cardio?

Body: Nope- sorry. Too tired.. You should probably just let me use this energy to throw a few more punches in to MRSA and Pseudomonas; they’re are all colonized and what not in here.. Cipro and Bactrim are not holding up to their end of the bargain today.. phew…

Me: Okay- one more episode and I’ll check back in on your progress… Try to be productive please!

*lays through another episode of the office (thoroughly enjoying it..)*

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The episode where Dwight Schrute gives birth to a watermelon…

Brain: Hey- look.. The show is over. Just go. See what happens. We have stored a little energy up; sure, you could lay here and store up even more… get all cozy.. but- time management. Dinner has to take place in 2.5 hours, you can’t eat before exercising, you also can’t eat just before bed time.

GI Tract: Please, go! I feel good right now. You will help us down here with motility- some of your lunch is still in here and you know how it doesn’t sit well when too close to dinner- those two get together and slow everyone down, causing commotion..

*pulls tooth to go to gym- tooth slowly complies*

At the gym- there were two things I felt like doing more than anything else: running and planking (core work out).

Here is what I did: a total of three miles of running with planking at every half mile marker. See…

1/2 mile than 2 minutes of planking

1/2 mile than 1 minute of planking

1/2 mile and then 1:10 of planking…. and so on.

Yes for one of my planks I did do two minutes; double my normal one minute time! I was very happy about this!!!

When I was done all of this, I was done. I broke a sweat, I made myself go to the gym, and I actually enjoyed myself- I didn’t want to turn it into a bad experience, so I did not push it too much. THIS is my balancing act- listening to my body while still reaching my full potential.

The next day’s work out? A little more rigorous. The circuit included arm curls, leg pressing, and more sprints..

And tomorrows work out- we will see, hopefully even more productive!

 

Feel free to comment, ask questions, and or share 🙂

 

Take care!

 

Morgan Fogle