In with New & Out with the Old

Nutrition is such a big battle in my life. Having CF and wanting to be active is a double edge sword. I need lots of or rather a ridiculous amount of calories each day just to keep up with the amount of energy my body requires to fight CF but I also have to compensate for any additional output, like running or biking. It's a difficult task. 

I've had many people tell me how they wished they had that problem. That they could consume and consume. Truth is, no you don't. Trust me. If you've ever struggled to loose weight, the struggle to gain and maintain weight is equally as hard. 

I opted for a feeding tube back in 2008 and have had great success with it. However, the goal has always been to get my weight stable and then maintain without the assistance of the feeding tube. Currently, I'm on a 3-month trial of just that. 

I'd say at this juncture, 2 months in, that I'm doing very well. I'm 2lbs away from my "optimal" weight of 123lbs. My personal goal is 125lbs, It just sounds better and it's easier to track then 123 or 127 or whatever. So, what am I doing nutritionally that is different then prior to having the feeding tube placed?

First and foremost, I've educated myself on good nutrition. What I've taken away is that no matter how good we eat or how clean our diets are; we are still lacking. Then when you add into that medications which can and do deplete or rob the body in some manner it's compounded. Only then to add in the inability to properly digest and absorb all that good clean food while trying to minimize the destructive aspects of medications, we're lacking. Plain and simple. 

Secondly, understanding the areas in which one is lacking. For me, its generally vitamins A and D along with minerals. I know this because I pay attention and ask for my labs that are done every 3-months as part of my CF care. 

Thirdly, I supplement like crazy. I add things into my daily routine that help aid in absorbing, processing, and preparing my system to the best of my ability. I add things like soluble and non-soluble fiber, probiotics, vitamins and minerals. I change my diet to help fix areas where I can not only add supplements in addition to adding high caloric meals and/or foods. 

My biggest advice to those struggling with their weight- gaining or losing, side effects to medications, low energy, digestion issues, and list goes on; is to take a good hard honest look at your what your putting into your body. 

Is your diet lacking?

What do you think you could be adding to help?

What do you think would make the biggest impact?

I'm not saying that you have to throw everything in your cupboard/fridge out. But what could you simply add to help your body? 

For me, it's in with the new and out with the old. I want this old feeding tube gone and I'm ready to reclaim my stomach. 

~Doodlin'

Listen Up, Not All Calories Are Equal.....

A few weeks or days ago an article about calories was floating around and I happened to take a gander at it, then upon finishing the fairly basic overview of the fact that not all calories are the same I see a young child with CF eating a famous black-and-white cream filled cookie for breakfast, because of the caloric demands CF'ers need.

Here's the thing. Most CF patients do need tons of calories per day. I mean a truck-load of them. And if we're honest all those gorgeous brightly colored fruits and vegetables at your local market do very little in terms of calories. It's not uncommon to hear CF'ers talk about eating a value meal from any of a dozen fast food chains frequently (daily even). Heck, I used to pull my beat-up car thru the fast-food window numerous times a week and I thought nothing of it, in fact I thought I was being "healthy" because my body needed and required those calories.

While growing up I would come home from school to eat an entire box of Frost Flakes. Yes, the whole sugar-loaded-zero-nutritional-valve box of garbage. My mom and I we're happy to see that I could put away so much for the sake of the calorie intact burden I was under each day. My mom would send me to school with a few bucks, because when I reached high school they began putting vending machines loaded with junk in schools, and it was an easy high-dose of calories.

I needed the calories and still need a truck load of calories.

However, and this is a BIG but, not all calories are equal. Just like anyone else on the planet we are only as good as what we put into our bodies. I, probably, better than any parent or non-CF'er understand the burden of consuming those precious calories. I'm here to tell you that as an adult all that junk plays a dangerous role later on. Hey, I'm not here to judge. I've been there, I traveled that route and I'm here to tell you its not as simple as it seems. These habits come back to bite us.

As CF'ers are living longer we're learning more about proper nutrition for us rare breeds and how to get those calories. It should NOT be from cookies, junk food machines but rather wholesome foods. Why?

Wholesome foods (fresh veggies, fruits, nuts, grains) do more than simply help us reach our daily caloric intake. Foods high in dairy promote mucous production, so finding alternatives is highly beneficial. Many foods can help with inflammation, which most CF'ers will at some point suffer from. They can help prevent Cystic Fibrosis Related Diabetes (CFRD), help prevent kidney stones, probiotics can help reverse or ease the negative affects of frequent antibiotic use. And on and on.....

Something that many don't realize is that CF'ers have chronic infections or bacteria growing at rates that the body can't control. What does bacteria eat or need to grow, sugar! So, why are we pumping ourselves full of sugar-laden foods. Not just cookies, baked goods, and candy. But what are we drinking? What about that bag of chips? You don't need to have a medical degree to find this stuff out. A simple search on the internet will give you more information than you probably want or just glancing at the ingredients.

I can tell you first hand that over the past 10 years I have slowly made changes to my eating habits. I'm not perfect. I still enjoy a Dr. P every once in awhile. I still pop a favorite cookie into my watering mouth. But, I do so because its a guilty pleasure and not something I rely on to meet my calorie demands. I make as much as I can possibly muster from scratch so that I can control the calorie levels with supplemental additives. I make smoothies from fresh fruits and add things like coconut oil. I pack along trail mixes and mixed nuts. Ever study the labels on nuts or nut-based butters? They are loaded with calories and are good for you!!! I don't buy milk and use milk based foods sparingly.

So, next time your temped buy the cookies for breakfast think about making a shake packed with fresh fruits, almond butter, a tsp of coconut oil, coconut milk or whatever fancy's you. I promise you'll feel better over-all. Your body will thank you years down the road.

because....

Not All Calories Are The Same!

~Doodlin'

Rockin' G-tube Accessories

Have you ever googled an image? Ever wonder where all those "homemade" photos come from? Well, they come from blogs just like this one. Interesting? Yes. Maybe. No

Well, today I was trying to find images of g-tubes like mine. I found thousands. The spectrum of age ranges are from very sweet babies that are days old to the very wise elderly. I don't feel so alone.

My point? I found these super duper cute covers for g-tubes. These particular ones are a bit juvenile for me but it inspired me to attempt to make a few for myself. How cool would I look in my bathing suit this summer with some rockin' g-tube cover? The other really awesome part is that you can make them in whatever type of material is most comfortable to you. Total customization.

~Doodlin'

Waste of time?

When visiting for CF Clinic we see a plethora of folks in many disciplines of medicine. CF clinic is supposed to be a comprehensive approach to care, therefore, we are seen by ALL those who manage our care.

There have been times that I have felt like a visit with a particular discipline or quite frankly the individual, is less than fruitful. For example, years ago I thought that meeting with the dietitian was a complete waste of time. I knew from the 15+ years of doing this that I needed to be consuming about 3500 calories a day. Our meetings would be about 5 minutes long. Until, I faced needing a feeding tube.

A little background might be helpful. I really enjoy chatting so I really liked the visit with the dietitian from a chatters perspective but I earnestly thought I knew it all and was managing my weight and/or nutritional needs just fine. I was also young and immature, which are huge contributing factors to my know-it-all attitude. Something more deceptive fueled that attitude. The thought that since I have sort of always been drawn to healthy options and a pallet for healthy fats, grains, proteins, etc nutritionally I was golden. I, like, most have a few things that are my guilty pleasures, Dr. Pepper and frozen corn dogs are a few. I added supplements to meals in the form of Ensure or Instant Breakfast shakes or fat soluble powders as often as possible. I honestly felt that there really wasn't anything more I could possibly add to my routine.

As I have matured and have become honest with myself I came to realize that I wasn't being 100% compliant with adding the supplements regularly but rather I was more wishy-washy adding it only when I remember or could stomach it. Truth of the matter was that after years of drinking the limited three flavors it became a chore to get the stuff down or at times down-right disgusting all together. I wasn't consuming the recommended amount of calories for various reasons. I would get too busy to eat or to plan a proper high caloric meal. I found it expensive to eat so much coupled with all the other expenses of maintaining my CF routines. This became apparent and I could no longer hide; the scale, the blood work, the bone density tests all spoke what I was afraid to admit. CF is hard to maintain particularly when your trying to find your way in life. When attempting to juggle all the 'regular' happenings life like college, social calendars, jobs, etc, etc.... crept in leaving little room to focus on nutrition. This was my truth. What's yours?

However, lying post-feeding tube surgery unable to cough or laugh because it hurt so bad, having to change my intimate time with my husband because I now had to accomodate a tube attached to me during the night and having to adjust what I wore because a new thing now protruded off my stomach changed my entire perspective. Funny how a crisis will do that. I wish my change had come proactively, before needing a feeding tube, I wish I would have put more effort into being 100% complaint and 100% honest but I didn't. Now I have to make the most of where I am. Meeting with the dietitian took on a whole new meaning. 

I no longer see the meeting with my dietitian (or any one no matter what my current state of health is) as a waste of time but rather an opportunity to learn new techniques, become up-to-date on what others are doing, leaning about what is working for others. Asking questions about different ways to make it most effective and efficient for me and my schedule. Finding new cheaper just as effective ways to meet my nutritional needs. Being honest with where I am and asking for assistance in making this work for me.

I encourage all patients and parents of patients to communicate honestly with your care team. They are there to help make managing this disease easier. If something is not working or you feel its unrealistic for you, then be honest with that. If paying for things is affecting your ability to be complaint, state that. They should be equipping you with resources or helping find resources within their discipline to assist you.

There is a reason that certain disciplines are included in our comprehensive care. It's not a waste of time. You get to choose to make the most of the opportunity. I encourage you to do so.

As a side note, I feel great now that I am adhering to the plan that my care team and I have collaborated together on to meet my needs and my lifestyle.

~Doodlin'