Encouragement Anyone?

With my limited experience of running long distance, okay not so long, but I am making great strides in upping my mileage beyond a 5K, I am thinking about how amazing this man must feel. How grateful he must be to have been able to accomplish running the NYC Marathon with CF. This brought me to tears, it gives me hope of what the future can hold. It shows me anything is possible. It encourages me to carry on another day.

Watch this short video.*Warning* you might feel inspired afterwards!!

NYC Marathon Runner w/ CF

Thank you for the encouragement today. Thank you for running for all of us and giving us hope for tomorrow.

~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'

What's with the name?

It has been brought to my attention that many of you don't know why I sign off here with Doodlin'.  Today I unravel the mystery.....

As a little girl who came from a family who worked hard but had little money I spent lots of time of my Nana, my mom's mother, as her babysitting service was free of charge. My younger brother and I spent countless days and nights with Nana and Papa as children. They had a small piece of property that housed dogs, chickens, pigs, and horses. My brother and I loved to play outside in the pasture, chasing whatever we could. We made all sorts of fun things on the property with our tricycles and wagons. I even convinced my brother to touch the electric fence, I made him believe it was fun....mwhahahaha :)

Being that we spent so much time with them meant that they had lots of time to come up with ridiculous nicknames. The one that stuck on me was one that is still used between Nana and myself. You see, when staying with Nana and Papa, Nana would sing (yes, sing) a morning tune upon our awakening that some how included our name. For me it went a little something like....

Kari Doodlin' Dollarhyde woke up one morning feeling fine............

After that first line she would change the rest of the chorus to include what might be happening that morning or what had happened the evening before. The best part of the song was that we got to sit on her lap while she rocked us. Nana is not a stick lady, Nana has meat on her bones and I loved that. I love that I could curl up in her lap and be surrounded by her. I felt safe there. I still feel safe there even at 29 yrs. I have a time or two in my adult years needed her lap to escape the world's and CF's cruelty.

There is truly no love like a grandmother's love. Thanks for the many hours of rocking Nana. I love you!

~Doodlin'

What I Wish People Knew About CF

I am a member of Cystic Fibrosis forum that strives to bring a sense of community, realness and positive thinking to those of us with CF and our beloved love ones. A while back the question of what we wished people without CF know about CF or could understand better was proposed. At first I had a laundry list of points and thoughts but then I withdrew from the question entirely thinking it was too complicated to even begin to answer.

As time has gone on that question keeps coming to mind. It flares up when I think that someone should know what I am talking about and not look at me like I'm the idiot. Which neither of us are, I just think there is so much and too few words. I feel like it will never really be understood by those without CF, but that they'll only be able to related thru compassion, empathy and love.

We all know what its like to experience a cold, many know what its like to have a daily routine of medications, many know what is like to face a doctor who gives you statistics on how long you have to live, many know what is like to walk thru life being imperfect in pain with no cure and many know what its like to face astounding medical bills. But to know what its like to have CF, is like trying to know what its like to be another person all together.

I want to be able to education my readers, friends, family and the entire world. I want to give you something that your brain can rap around. I want to paint a picture without making it look hopeless but even that is a daunting task that I think only a lifetime of educating oneself on CF will accomplish.

But I can try to pin point a few things I and other CF'ers wished people could understand better......

• Minor colds, or illness's could be life threatening and please take me seriously when I ask to be notified that your feeling "under the weather" so that I can bow out.

• That not all CF'ers are the same. CF affects each person differently and manifests itself differently from patient to patient. We are not cookie cutters. We are unique cookies, some of us have 3 chocolate chips while some end up with none.

• Taking care of myself is a full-time job with no pay, no benefits and no prospect at future employment. No joke. But most of us have to really seek employment to pay for our medical bills and fear losing SSI/SSDI if we are gainfully employed. So, really, we have two full-time jobs. 

• Our life expectancy isn't 16 anymore. We have fought hard and we have pushed that number up into the mid to late 30's!!!

• CF is our WHOLE life. We don't get better, we never go into remission and we never get a break. EVER. If we do its because we have died.

• We pass gas and can't help it. Many CF'ers are plagued with having to take enzymes to digest food which can't break down the fats and causes massive stomach pain. We are sorry for this and we know its very unpleasant for all who happen to be around. Sorry a billion times over.

• Wish it was viewed as a "lifestyle" disease instead of a lung disease. Because CF is not a lung disease it's a disease of the cells and it affects far more than just our lungs.

• We struggle tirelessly to gain weight. Many of us have G-tubes to get extra calories. We hate hearing that you would trade being heavy or needing to lose a few pounds for CF. Take my word, you would not.

• Just because I have CF doesn't mean my offspring will have it too.

With all that being said, please join the conversation. What would you like to know about CF. What things have you thought "I wonder why, how, when.........." The above is simply from mine and others with CF's prospective based on what people have said to us, asked us and non-verbally communicated to us.

Just curious about what's floating around in your head!

~Doodlin'

Awareness Opportunity

Anyone remember that old American sport called Baseball? Baseball used to be a staple on the radio and later on tv in most homes around the US. Many still enjoy a ball game in their pass-time while others still have a die hard obsession with it.

Whether your a die hard fan or are just a person who glances at the final scores every once in awhile the CF community could use your help.

Ken Rosenthal of Fox Sport Baseball could be wearing a 65 rose's bow tie to bring awareness to Cystic Fibrosis. Please follow the link below to "like" the photo of what the 65 rose's bow tie will look like. You can only vote once, so please pass this on to your friends for a chance to vote too!

Maybe you could host a game day party and get to know baseball again and to find out if the 65 rose's bow tie made it on the big screen.

65 ROSE'S BOW TIE

Thanks for helping to bring CF into the spot light. Helping make CF stand for Cure Found!

~Doodlin'

My Shoulders Can Hold No More

I use this blog as a way to get thoughts out of my head that may be something other's can use as they walk the maze of life with a terminal illness. Most of  All of the writings are about me, whats happening with me, how much I am suffering or how great something in my life is or was. Tonight my shoulders can hold no more. I must unload my burden and ask for help.

Today, I am over come with grief. My grief is not about me its about all the children suffering in our world. In our backyards, yet so many of us just sit by the side lines and do nothing. So many children suffer so we can have. So. Many. Children.

I came across information about child labor and chocolate while surfing facebook, I have heard this before but like millions of other self-induglent individuals I brushed it off. Well, today I felt a sharp pain in heart for having brushed it off. I feel guilty that I continued to fuel the monster. Today I take a stand to stop this ridiculous suffering. Seriously! Today I researched what chocolate to buy and found a nice list at Stop Chocolate Slavery.

After I had committed to buying only child-labor free goodies I was once again smacked in the face with starking realties of the extent of suffering children go thru. Invisible Children made a powerful video:


25 Recap Video from INVISIBLE CHILDREN on Vimeo.

After watching this I had tears running down my face. I am not just talking about children in far away lands but look in our backyard. Child Welfare does a nice job giving us a plethora of information about US orphans.

I know I alone can't change the world but I can start a movement. I can help be a voice to those who don't have one or rather must suppress their voice.

I know that you can't change the world alone but you can do SOMETHING. Whether it's being cautious of the products you purchase, being silent for 25 hours, become a foster parent, or simply write a blog post for billions to see. YOU and I can do SOMETHING. Will you take a stand with me?

The children of the world's shoulders can hold no more.........

~Doodlin'

Notice of Continuing Disability Review

I have over the years felt like the disability benefits topic has largely been swept under the rug. Doctors and financial advisors don't talk about it, patients don't talk about it, parents of patients don't talk about it. Maybe they do and I am just missing the conversation but seriously even when I have been struggling to pay for medications and/or treatments no one brings it up as a possibility. The only reason I know about it is because my mother collected SSI for me after my dad passed away when I was 15. Essentially it is drawing his Social Security benefits for the support of his disabled child (me). Our case worker at DHS helped my mom through the benefits maze and found that it might be possible for me to collect disability upon turning 18.

Well, I being a stubborn soul didn't think that was necessary and that I could work just as hard and just as long as the next person. WRONG. After lots of missed time from work and needing supplemental health insurance we looked in to it again when I was 20. In 2001 I was awarded the ability to draw Social Security benefits in the form of disability. This did not come easy. There were attorney's, visits to physicians that Social Security had appointed along with medical data collection from my doctors. My medical file is seriously a room full. In the end Social Security declared Cystic Fibrosis to be a disability that hinders one's ability to support themselves.

I still, after, 8 years of collecting the benefits feel weird about it. In fact, I really don't tell the world (until today) that my income largely comes from the benefits. The biggest reason of having the disability benefits is that it's linked with Medicare and other medical benefits, like hospital coverage. Without the supplements I can't even begin to think about what kind of medical care I would be getting. No joke.

Every so often I get a Notice of Continuing Disability Review in the mail from Social Security. This time they are looking as far back as 2006 to determine if I am still disabled and still eligible to receive the benefits. This process always makes me nervous. I don't know who is reviewing my case, what their credentials are or if they even have any idea what CF is. It would be devastating to loose the benefits. I wish there was some sort of tracking system that could show Social Security what diseases have been cured and what diseases still have a death sentence attached.

I do want to make a point that I don't rely completely on the benefits. I do give back to the benefits pool by working as much as I can when I can. Not that I owe anyone an explanation, I mean, I wasn't in an accident caused by my drinking driving leaving me disabled. I have no control over it, I had no say nor did my parents at that time.

Furthermore, if your a cyster or fibro or parent to one you might want to look into your state's Social Security benefits programs. They were created for a reason. There is no shame. Shame should be placed on the pharmaceuticals companies banking millions off drugs you need to stay alive, shame should be placed on insurance companies for turning patients away when they need life-saving treatments or surgeries.

Notice of Continuing Disability Review is still pending........

~Doodlin'