Taking Away My Choice

Woke up today to an email from the CF Foundation about a new infection control policy that they are implementing, the policy statement in no way gives us evidence to support the new guidelines.  A snippet below (read full text thru link provided above).

"The key elements of the Foundation’s new policy are: 

• At any CF Foundation-sponsored indoor event or meeting, including gatherings like committee meetings, only one person with CF may be present and he or she will be designated in close consultation with event chairs and key event volunteers.

• At Foundation-sponsored outdoor events or gatherings, people with CF need to maintain a distance of at least 6 feet from each other. 

• Under no circumstances shall individuals who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) complex attend any CF Foundation events, meetings or offices."

 Here is the thing. This impacts more than just what the CF Foundation does. The Foundation sets the standard for other organizations that serve CF patients including insurance companies. Therefore, the organizations that host or sponsor  stuff like a CF support group will most likely find themselves in the position of having to discontinue those face-to-face types of functions as their insurance will forbid such business practices. Unless they host it outdoors and maintain 6ft distance. Not gonna happen in my neck of the woods.

The other thing that really is getting under my skin is that CF is a progressive disease. Meaning, the infected's health declines overtime. Sure, the germs can sort of be dodged but then again not really. Study after study has come out about the fact that MRSA is ramped and not just in CF but in everyday normal healthy individuals. Pseudomonas in CF is more common than not having it, sort of par for the course thing.

On FB some have alluded that those who lost their battle with CF *might* still be around had these types of strict controls been in placed years ago. I challenge that notion, CF is what took their precious life and those who are alive today are so because of the wonderful advances in medication that the Foundation has largely been behind. CF is more promenent today than 30 years ago yet most of those patients died at very young ages and I highly doubt they socialized together as coordinated events were nearly none existent then.

1. Should we be cautious? YES 
2. Should there be some sort of infection control? YES (and there is)
3. Should we take measures to wash our hands after going to the grocery store, bathroom or attending an event with other CF'ers? YES
4. Should we as CF'ers or caregivers to CF'ers understand the risk of exposer? YES
5. Should we be compliant with all treatments? YES

In high areas of concentration, like the Bay Area, what's to say these patients aren't coming into contact already without knowing it? What about CF clinic days (many CF'ers come at the same time) what if they are exposed while waiting at the pharmacy to refill prescriptions but do so without knowing it? The what-ifs go on and on....

I simply feel that it should be my choice. The patients, as to how much exposure I'm willing to endure. No one else. Ever. 

Parents will of course make that personal decision for their children and they should, but, I highly recommend to carefully weigh those risks against the mental and social well-being of your child. The ability and will to fully-live is more powerful than any drug. I personally don't want to live to the ripe old age of any number if I can't fully live. I, like, many CF'ers had to find the will to carry-on without the support of others who understand my trials and tribulations. Its like walking thru hell and back. The path was riddled with deep depression, destructive behavior and no will to live. That lethel combination of isolation almost contributed to my death, not CF. Upon finally being able to connect with the CF community I've found support, friends and inspiration. I've meet others decades older than I, that's inspirational, that's gives me fuel to be complaint and carry-out when things get tough. 

This whole business is a slippery slope. I, for one am against it being mandated. Give us the option or choice. It is, I, that has to live with the consequences but until there is a bona-fide cure we all will find the same fate. 

~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'

Tips or Tricks?

From time to time I get asked questions from parents whose child or children have CF. The most frequent question I am asked is "What tips or tricks do you have for parents {whose child has CF}?"

My answer in short is always the same. Allow them [the child] to grow or learn to be passionate about life. Without the passion all the hours spent doing treatments, attending doctors visits and being sick will take over leaving them bitter. When we have a passion we see the "crappy" stuff as a means to an end. We have to do the treatments in order to carry-out our passion.

It also helps us to put the "time" it takes to all the treatments into perspective. I mean, an hour twice or three times a day, is nothing if your able to spent 6-8 hours living a full life, right? Sure. There are times when it really totally sucks but in the grand scheme of life its really time that we'd waste watching tv or surfing the internet or texting our friends {by the way you can do all those things while to doing treatments}.

Don't stop your kids from playing sports or playing a part in the upcoming play. Just make the treatments a must-do before they can do what's fun. The fun stuff is what keeps us mentally okay. Chronic illnesses have an incredibly high rate of depression, so the fun is just as necessary as the other stuff with fancy medical names.

Over time they will see that in order to be healthy enough for the fun stuff they'll have to do their treatments. No one {not even "healthy" folk} can run, play the flute, sing in the choir or recite the lines in the school play if they can't breathe. The rewards for doing the treatment will be the ability to participate and that is worth more than mom or dad nagging. BUT it has to be instilled early on that treatments come first so we can do the fun stuff. 

So, to recap my tips are:

1. Find something to be passionate about
2. Instill that treatments and taking care of ourselves comes first
3. Allow your child to do participate in whatever activities they want (within reason) as long as they do their treatments.
4. Set your child up to succeed. Set up a schedule for treatments that works with their hobby or passion.   {Example: get a portable nebulizer so that they can do treatments while driving to games, plays, friends, etc}

Overall, remember they are more the CF. They need and want to do what everyone else is doing and thats okay, as long as treatments are done!

~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'

Bag-O-Motivation

December and now January have proved to be incredibly trying months from many different angles of life. Surprisingly my health is not one of those aspects. So, today, when I got a large bag with my name on it that instructed me to open one gift after doing my nebulizer (breathing) treatments each day as motivation, you can image my joy. In fact the joy was so overwhelming that it overflowed from me like a waterfall.

You know I get many many words of encouragement, which I love and will always need from time to time. But this gift was so thought out and so perfect as a jump start to gaining motivation or the reward factor of changing a schedule to accommodate the treatments. Even though I am almost 30 years old, I still need to be rewarded. And let me tell you its so much more pressure (positive) to earn a reward from someone else, rather than me giving myself the reward. I feel obligated to follow thru on my end of the bargain you'd say.

My first gift was a lollipop and a little printed "you can do it" message. While I was doing my treatment tonight, I thought about all the parents who attempt tirelessly to get their children to sit still and do their treatments how great something like this would be. A simple gift to pull from a bag if one does their medications is marvelous. It could be a sticker, piece of candy, a piece of change to put in their piggy banks (dime or a quarter) or whatever your child would enjoy. I also think that this idea works for any adult who maybe going thru a rough time.

Do you know someone who could use a few days of encouragement or motivation? Maybe give this a try it sure warmed my heart and put a fire under my backside.

Thank you Nancy for this wonderful gift.

~Doodlin'

CF, Children, Adoption... Oh My!

As a CF'er who is married and has been contemplating raising children with my spouse I know exactly how it feels to be judged on whether we are fit to parent based on health. However, I seem to have a lot of "conditions" for parents with CF. Things like, what's their individual prognosis, are they pre or post transplant, how stable is the marital relationship, what's their financial situation, etc...etc...etc.. Maybe this stems from working with adoptive parents and knowing what scrutiny they go thru and thinking that maybe those with terminal diseases should go thru the same sort of thought process. But then when I take a step back to really think the issue thru I become appalled to think that my God given right to parent/mother is with conditions of my physical being rather than on my ability to love, nurture, discipline, tend to and teach.

There is much debate in the CF realm about whether a CF'er should raise children regardless of how they enter a family. To be completely honest, I have questioned this myself. Particularly with adoption. An adopted child has already experienced so much loss in their small lifetime that subjecting them to the possibility, a high possibility I might add, that they'll experience another devastating loss is very unsettling to me. With a biological child the loss is still just as devastating but without all the background baggage/loss. This compounded with things like, is the CF'er married or are they single and attempting to raise a child alone and battle CF, what type of support system do they have in place.

There is little to no information out there about having CF and having children. I mean z.e.r.o. I feel like those who have braved the storm have so much to teach those of us who really need some answers or at least a road map of sorts on how to find information.

How does one decide? What if we choose adoption and are never chosen or are declined due to my health. What if we become pregnant and shortly after I pass away leaving my husband devastated by loss with a new baby to raise? What if... what if....

Is anyone guaranteed a specific amount of time?

Normally, I would brush of all the 'what if'ing' and make my decision but this decision is huge. It affects not just two adults who can rationalize but also a potential child. A innocent child, who had no choice in the matter.

B and I said we would give it 5 years of marriage before we really thought about children. We are here as of Sept. 3rd. We are talking and the more we bring to the table the less we have answers for.  Quite frankly, I don't know if we had all the answers that making this sort of decision would be easy because of how much unkown is really there. We'll never know the exact day/time of my passing until it happens, we don't know if a cure will be found in my lifetime, we don't know what medical advancements will come about that could make CF equivalent to asthma. The list goes on and on.......

We want to make a decision that is based on the most current information we possibly can and to fully be at peace with our decision. We are having genetic testing done to fully understand that aspect. I have done a few medical tests to understand how my body would handle pregnancy. Should we decided to forgo attempting to have children biologically we have found that domestic adoption is really our only route due all the requirement of international adoption and medical. Which doesn't turn us off to adoption in the least but places an aspect I am not familiar with which brings feelings of fear, having a birth mother pick which family their child goes to is really hard for me to swallow, it terrifies me that they might look over us because of the CF (after we have paid thousands).

Or, do we pray for peace in knowing that the two of us is enough.

Any insight is welcomed, whether you have CF or not.