Tuesday, May 19, 2015

CF Awareness Post Question Day 19

Here's a question: are there any dietary restrictions?

There are no real restrictions, but some individuals can tolerate certain foods better than others, like the healthy population.  People with CF need a higher calorie and higher fat intake than the average person.  We burn more calories so we need to take in more calories.  This is for those who are pancreatic insufficient, meaning the pancreas does not break down food like it is supposed to.  Some people notice that dairy products make them produce more mucus so they avoid milk and ice cream. 

Growing up I was told to eat eat eat, anything and everything.  My mom would put butter on everything.  We would search the food store looking for high fat foods only ever finding low and no fat.  You would be surprised how hard it is to find good foods that are high in fat and calories (by good I mean healthy and not chips, snacks and junk foods).  To this day it is hard to control my eating because of how I grew up and needed to grow up.  I never had to have self-control with food, because there was no need for it.  So if I felt like eating a container of ice cream I was allowed (I don’t think I ever did lol).  This is an area in the CF world that is slowly changing.  Stressing not only high calorie and high fat foods but also healthy foods.  Especially if growing old is an option now.  If you think you won’t live to see 30 you aren’t so concerned with heart disease etc.  But if you are going to live to be 80 you need to worry about those things! 

Gaining weight is an issue.  We struggle every single day to maintain our weight let alone put weight on.  I have been fortunate enough as I aged (thanks menopause!) to not have to worry so much about my weight.  But up until I was 30 I struggled for every ounce I gained.  By the time I lived on my own, I had a calorie regiment that would blow your mind!  I repeatedly heard the “you must have a hollow leg” comments or “where do you put all that food?”  Breakfast was light as I have never been much of a breakfast person.  But all day long I would snack and eat like it was my job, even while working, because it WAS my job.  I would eat snacks almost every hour if not more.  I brought two bags to work, one for food and one for work stuff.  Yes an actual bag dedicated solely to food and a drawer filled with snacks and cheese dip (I loved cheese dip on pretzels!).  I spent small fortunes on food and supplements.  I tried all types of high calorie milkshakes to eat throughout the day, coupled with snacks and dips and meals.  I would come home and eat more and then eat dinner and then have a snack before bed.  And even with all of this, I was lucky to be 107 pounds.  When I graduated high school I weighed 104 pounds.  By the time I was 25 I had only gained 3 pounds in 8 eight years.  For reference, since weight has stopped being a big concern for me, right before my pancreatic surgery last July I was 132 pounds.  I was a normal weight for someone my size.  Now I am 114-117 pounds depending on the day, time, etc. 

Many times I would stop eating because it was not fun for me.  It was a chore; it was a treatment for me. It was just like all the medications I was taking, except that I had to do it continuously. (this has changed now that I stopped worrying about my weight, I love food again!)  Sometimes I would dip below 100 pounds and I would stop getting my period.  I took many pregnancy tests thinking I must be pregnant, only to realize I was fighting something off and my weight had plummeted.  I was lucky again in the fact that my weight never got dangerously low where I needed to get overnight tube feedings via a g-tube.  But I know many people, as adults and children, who have gotten tube feedings in order to just maintain their weight.  It is a real struggle. 

And it is a struggle that many healthy people think is great.  Hearing “oh you are so skinny you must love it,” or “but at least you are thin,” are NOT helpful.  Twigs as legs and arms, they are not pleasant.  A barreled chest (common in CFers thanks to lung disease – http://www.mayoclinic.org/diseases-conditions/copd/expert-answers/barrel-chest/faq-20058419 ) makes us feel abnormal and weird.  Especially when you have skinny arms and legs, you feel like E.T.!!!  This country, and many others, thinks that weight issues are only a problem on the other side of the spectrum…those who are obese and overweight.  But super thin is a weight problem too.  

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