Tuesday, January 11, 2011

That's the Way It's Supposed To Feel

That describes my attitude towards CF for much of my life. Whether I was short of breath, had lung pain or a bloated stomach, my response was, "well, that's the way it's supposed to feel". As I've "matured" in this CF life, I've realized that I have much more control over this disease than I used to give myself credit for. You see, maturity isn't necessarily what you know, it's what you do with what you know. I've always been up on the latest medicines and treatments offered to the CF community, but I wouldn't be the first in line to take advantage of the "latest and greatest". It's certainly not the case that I didn't care, but in a sense, I didn't want to rock the boat. I felt fine. That's pretty common for us isn't it? Feeling fine. We figure that if we're not feeling horrible, we're ahead of the game. We get used to feeling "just ok" and that quickly becomes our normal while feeling "pretty good" becomes the peak of which we think is possible and feeling "awesome" seems out of reach.

This couldn't be more true in regards to my digestive enzyme choice over the years. I was taking the same PEP (pancreatic enzyme product) for as long as I can remember and because I never had much trouble putting on or maintaining weight, I figured it was doing it's job. Problem is, a PEP should be that and so much more. While I was maintaining weight, I did my best to ignore all of the stomach pain, bloating, inconsistent stools and frequent runs to the bathroom. It had been occurring for so long I figured it was "just the way I was supposed to feel". It wasn't until my hand was forced that I ever even thought about switching enzymes. I mean, why rock the boat right?

When the new FDA regulations came out regarding PEPs, I had no choice but to hop off the sinking ship that I was sailing. I had heard rumblings in the CF community about a new enzyme hitting the market called Zenpep. After doing a little bit of research on my own, I decided to approach my doctor with the information I had uncovered and suggested that I make the switch. He agreed and my journey with Zenpep has been a good one. Instead of being bloated after every meal, I now only look pregnant if I over do it on fast food or pizza (I'd assume that falls in the category of- it's that way for everybody). My stools have become more consistent and it doesn't feel like I'm sitting on a toilet for most of the day. I'm still maintaining myweight, but like I said, that's never been an issue for me.
The biggest thing that Zenpep has done for me was made me realize that "that's NOT the way I have to feel". I got stuck in the "just the way it is" mentality and it was that little blue and white pill that snapped me back into reality. Things CAN change. You DON'T have to settle for "just ok". You DO have options when it comes to PEPs and other meds. I'm very happy that I made the switch to Zenpep and so far, there's no looking back...

...I just wish I would have woken up sooner.

Comments (5)

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This is good to read from someone that can tell you how they are feeling. My daughter can not yet. Since she is only 21-months-old. But since she has started taking ZenPep, she has not had reflux issues. She also takes fewer pills then before too. Since it is new her Dr.s said they really weren't sure how it would work but they have been hearing really great feedback from their parents. I won't change her pep for anything! Not even free whatever!
ride4cf@yahoo.com's avatar

ride4cf@yahoo.com · 742 weeks ago

I think we all go through that regardless of what type of medication we're taking... only because we've never gotten to feel the base line of "NORMAL" or how we should be feeling. I had the most difficult time with my daughter's enzymes when she was first diagnosed with CF.. again, she was almost 4 yrs old. Ultrase was a disaster, then she tried Pancrecarb, much better! But, then, like you said, the FDA forced everyone to switch off their enzymes to the FDA approved enzymes. I will admit, I was very nervous at first, only because we've been down that road before, but soon after she started taking Zenpep her body improved and allowed her to eat more fat intake. Before, eating anything over 12 grams of fat in one meal was a recipe for disaster... now, she can even add in dessert because she doesn't require as many Zenpeps to substitute for her lack of enzymes produced. What a great feeling to be able to EAT. Thanks for your blogs into the world of CF. Without people like you, I wouldn't have a better understanding what my daughter's 8 yr old body is going through.
Thank you for sharing. With have CF myself, I am in total agreement with you in regard to excepting the way I feel on certain days. I start on ZenPep next week, been on Ultrase for years. Thanks for the good outlook on this medication.. Elizabeth
I always say it is so much easier to be an adult than a child with this disease. I think part of what you are talking about is that when you are younger you don't really know any better than to put up with what you have been experiencing all of your life. But the other thing is that as we age, some of us develop a drive to do the best we can/get the most out of life/use all the tools in the toolbox when it comes to CF. It's not the easier path, but definitely the most rewarding. And you're right: it does make you feel empowered and more in control of your disease. Hope the Zenpep keeps working out for you!
Glad you joined the Zenpep crowd. That was exactly my experience, too... within the time it took to down my sample bottle, I ordered a full supply.

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