THAT DOESN’T WORK FOR ME

A85B8CFD-A3E2-4C15-9379-771439CC884EI wrote a bloooog a while back called “I think I killed cystic fibrosis,” and in it I shared some things I do that have been working for me.  Those things have helped me to be in the best shape of my life.  There have also been things I’ve done or tried in my life that have NOT helped.  I thought I would take some time and share some of the things I’ve done or have tried that I feel have neither produced any positive results nor have helped me to fight CF.  Here we go:

 

1. Eating junk for the sake of calories – growing up I was constantly being told by the doc that I need to get my calories in to gain weight because people with CF have trouble gaining weight.  So whenever I can, I need to “eat that triple cheeseburger!  Drink that triple-thick milkshake!  Order that super-sized fries!  Eat AAAALLLLLL THE BACOOOOON!!!”  I should be eating the worst kind of food because…..calories.  The problem with this is……that doesn’t work for me.  As Homey D. Clown once said, “I don’t think so.  Homey don’t play dat.”  Here’s why this doesn’t work for me:  when I eat junk, i feel like junk.  The quality of the food I eat will affect the way I feel.  If I eat junk, I feel like junk.  If I eat healthy food, I will feel well.  I learned this principle a few years ago…I can’t remember exactly when, but I started eating healthy.  As I became more consistent, I realized how much better I was feeling.  And get this, fellow CFers:  I could actually breathe better.  I noticed that when I would eat junk and drink junk (like pop), it was a little harder to breathe.  Drink less pop and drink more water.  Your lungs will thank you later.  If your FEV1 numbers are decreasing, could part of the problem be what you are eating and drinking?

2. Inhalers – Remember that opening scene in “Star Wars: The Last Jedi” where Luke looks at his old light saber and just throws it behind him while walking away?  Well, that’s kinda what I did a long time ago with the albuterol inhalers…..you know, the kind where you took in two puffs and went about your day?  Here’s the thing with those: that doesn’t work for me.  It just doesn’t.

3. Essential oils – I was curious about this for a bit.  We have a diffuser and some oils here at home.  I’ve used it a few times and I can say, that it doesn’t work for me.  I’m not quite ready to throw this one out the window yet.  I could concede that perhaps I haven’t consistently used it long enough to say if it helps or not, but when I did try it I didn’t notice anything.  If the oils have helped you and there’s something I’m missing, please feel free to try to convince me.

4. The Vest – The vest seems to be a popular item in the CF community and I hadn’t had the opportunity to try it out until only recently.  I went to a Great Strides event in Nashville….I think 2 or 3 years ago….and I met some cool vendors who had booths set up with various gadgets and gizmos.  One of the booths I visited had the vest and was letting people try it on and use it.  When my turn came and I put it on, the man turned it on.  After a few seconds, I asked him to turn it up to its max.  He said to me, “that is the highest setting.” I responded with, “ooooh.”  While using it for a few minutes, I felt nothing.  At all.  But hey, that’s ok.  Just because the vest doesn’t work for me doesn’t mean it won’t work for someone else.

5. The Flutter – Remember the flutter?  I don’t even know if it’s still out there or not.  It was small like an inhaler, but it had a marble in it that would shake when you blew into it.  That shaking it produced was to go all the way to your chest and shake your lungs from “debris.”  It was a neat idea, but that doesn’t work for me.

6. Doctors Who Couldn’t Care Less – When your CF doctor has someone on their staff (because they can’t do it themselves) tell you that “your health is not as important as their obligations,” it’s time to get a new doctor.  That’s exactly what I did.  Find someone who doesn’t look at you as a number, but rather looks at you as a person and listens to your input.  It’s called “being treated as an adult.”  My drive is a little bit longer when I have a doctor visit, but it’s worth it.  Going to a doctor that doesn’t care about you….yeah, that doesn’t work for me.

7. Orkambi – Ok, it’s not that Orkambi doesn’t work for me….it’s that it’s not made for me.  I don’t have the DF508 mutation, therefore I can’t have Orkambi.  It’s not for me.

 

So, there you have it.  There’s the list of the things that I can remember that just do not work for me.  The thing about having CF is that everyone is different.  Just because something doesn’t work for me doesn’t mean that it won’t work for someone else with CF.  I don’t intend for this list to say “Since it doesn’t work for me, YOU shouldn’t do it either.”  That is totally not what I mean.  If anything, I want this bloooog to convey a message that if something isn’t working, why keep trying it?  Me personally….I don’t want to waste my time doing something that isn’t producing positive results in helping me fight CF.  If things on this list helps you to fight CF, that’s great!  Keep doing it (except maybe for #1).

I would love to know what works for you.  What do you do that helps you fight CF?  Feel free to continue the conversation in the comments section.  Also, if you want, any “likes” and “shares” would be appreciated.  Until next time,

STAY TUNED

 

 

 

 

 

5 thoughts on “THAT DOESN’T WORK FOR ME

  1. ashleycoleman87 says:

    I’m so glad I’m not the only one that has a vest and it does very little for me. I think (assuming here) because we are both in good physical shape that the amount of pressure and shaking it does is nothing compared to a good workout. I’m assuming your lung function is somewhat high. When I have been sick… FEV1 at 57-70% it is helpful because I am too sick to workout but other than that, it stays turned off for months at a time. I’ve really listened to my body on this one. As far as the albuterol inhaler goes, I keep one for if I’m feeling super tight but I take 4-6 puffs instead. I prefer it to be nebulized to open me up. And Orkambi, don’t qualify either 😦

    Like

    1. BOURNE to TRAIN says:

      I think you hit he nail on the head with the vest. I think exercise is very underrated as far as how effective it is. I sometimes wonder if doctors understand how effective it is. I guess exercise is our “orkambi,” and I’m ok with that. I definitely prefer the albuterol as an aerosol as well. Thanks for sharing 👍🏻

      Like

  2. Mom says:

    So true when you were growing up we were told to feed you the high calorie/high fat foods. And as often as you could eat. I wonder if Dr’s are still saying that to parents today of children with CF?

    Like

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