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'

My Suffering Has a Name: PTSD

At the CFRI Conference the schedule was packed with lecture sessions and networking. So, much so that you really had to picked which lectures interested you most and attend only those. There was no way to attend them all. There were two lectures that I felt very passionate about hearing; 1)PTSD and 2)Women with CF are Having Babies.

The one of most value to me after participating in the lecture was this idea that PTSD existed in parents with individuals suffering from chronic illnesses like CF. But more than that how I related to every. single. symptom. of PTSD. Heather Walter PhD, Director of Graduate Studies at The School of Communication, The University of Akron in Akron, Ohio who has a daughter with CF had read an article, Invisible Patient: Post Traumatic Stress Disorder in Parents of Individual with Cystic Fibrosis. (I encourage you to read the full article for further clarification.)

As she made her way thru the article she was astounded by how the article validated all the feelings she had since her daughter's diagnoses. The article focused really on the parents of those with CF and how the parents are often experiencing symptoms of PTSD such as re-experiencing, avoidance and arousal.

As I sat on the edge of my seat listening to her explain what each symptom was I was nearly moved to tears. She explained re-experiencing to include intrusive recollections and psychological distress. Avoidance includes selecting to make conscious or unconscious choices to avoid information or not to do some things. It also includes emotional numbness. Arousal includes hyper-vigilance, anxiety, irritability, anger, guilt, self destructive behavior and insomnia.

Wow.

I have been as honest on this blog about my journey with depression, loss, anger, self destructive behavior and even attempting to commit suicide as I could possibly bare to be. This is so real. The pain is so deep.

For so long I have struggled with a deep depression. Often times I was able to control it, to get a grip and function normally but my goodness there have been days, weeks and out-right long periods of time that I felt so alone. So misunderstood. Unheard. Many just say "pull up your boot straps girl its never going to change" or just diagnose it as depression, which part of it is. However, depression is not all of it. Anti-depressants doesn't help all of it. Because CF at this point is not going away.

As I continue this life with CF I am re-experiencing often times multiple times a year psychological distress. The things or events that have been traumatic I get to relive over and over. I have and do avoid information and/or things that I need to do in order to simply stay alive. My anxiety at times is beyond rational, I have issues with anger and have taken anger management classes to help control it and of course the self destructive behavior in arousal. I am beyond overwhelmed.

After Mrs. Walter ended her lecture I hurried up to exit the conference room in hopes to catch up with her as I wanted to talk to her more about PTSD, but from the patients perspective. You know us CFer's who are in the thick of this mud. She was awesome and we both agreed that there needs to be more conversations about this, more open dialogue for both parents and patients in the early years. So, that the medical teams can be informed that this is a real issue for some. So, that those who recognize these symptoms in themselves may be helped by simple self care; like rest, exercise, friends, family and avoiding destructive behaviors. The fact of the matter is that many think of PTSD in relation to post war trauma or rape victims, but it is present as a response to many other life events. PTSD can be just an episode or brought on by a new event that triggers them such as having a PICC line placed or a hospitalization.

Later on as the conference began to come to an end a woman pulled me aside. Asked me if I felt comfortable talking about my journey with depression. I was so glad she reached out. She is a mother of a child with CF who like me has struggled in this area greatly. After the conversation, a few tears from us both and a promise to stay in touch it left my mind whirling. In fact, I have been consumed by the fact that if the two of us (this women's child and I) have struggled so much I am willing to bet there are others out there. Who are at their wits end or nearly there.

Depression and PTSD are linked and often go hand-in-hand. I have been pouring over every piece of information about both depression and PTSD I can find. While I feel like I am currently in a good place with minor episodes of depression from time to time, I can't begin to explain how alone I felt during my teenage and early twenties, when I believe I suffered the most. I don't want anyone else to be alone. I want them to know that they can come out happy, fulfilled and loved.

I am determined now more than ever to be a voice. I don't know where this path will lead me but I do know that this fight should not be done alone in silence where the darkness can creep in. The suicide rate in young adults is high enough and I am thankful I didn't become apart of those numbers. We as a CF/Chronic Illness community need to be diligent in diagnosing this and finding ways to help treat it because it is a life-long battle.

This conversation is simply beginning.

~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.