5K Ghost Runner for More Than Just Me Foundation

On April 12th, 2014 I will be running a 5K around my neighborhood as a ghost runner for the More Than Just Me Foundation. I'm sure your wondering a few things.... Whats a ghost runner? What is the More Than Just Me Foundation?

The More Than Just Me Foundation (MTJM) is a great organization set up to help those with CF and their families. This foundation differs from the CF Foundation in that they support the patient and families directly rather than through funding research. Both aspects are equally important. MTJM is an active approach to assisting those in need.

Click here for more info on MTJM 

MTJM is hosting a 5k run in Florida, but since I'm in Oregon I will be running as a "ghost runner"; meaning I'll just run my little 5K anywhere that is convenient while others run in Florida. I'm seeking pledges in hopes to help those who are struggling with the financial side of CF related care. If you'd like to make a pledge to my campaign please click the link below:

More Than Just Me 5K-Pledge

I truly do think its important to support those who are struggling to pay for care. We can create new medications or new technologies to make life easier but if those who need it can't access them because of barriers such as finances then what good are they?

I look forward to seeing how much we can secure together. I'll be putting my feet to the asphalt along with $25 of my own dollars. Won't you help me help others with a $5 pledge? It's easy and only takes a few seconds: PLEDGE

~Doodlin'

May is National CF Awareness Month: Fun Fact #2

I'm finding so much inspiration and motivation from my CF community this month, so much so I braved making a video for you!

To donate to this years Great Strides event:

Team Kari Doodlin'

To learn more about Orphan Diseases: 

Orphan Diseases & Orphan Drug Act

~Doodlin'

May is National CF Awareness Month: Fun Fact #1

I'm gonna take a leap here and assume that the majority of my readers know the basic definition of Cystic Fibrosis. If not in an effort to not re-create the wheel check out the CF Foundations definition here.

I want this awareness month to teach you something or to dispel a previous assumption or belief about CF. I don't wanna just regurgitated what's already out there. Therefore, I do need your help. Please ask a question in the comments below and I will answer it. Or if you prefer to email your questions you may send it to illnessinspiredwords @ gmail dot com.

Fun Fact #1:

CF is not a lung disease!

Yep, it's true. CF is a complicated disease wherein the cells can't regulate or transport (or both) a proper balance of water and salt. The respiratory tract or lungs is only one of many organs or grouping of organs affected by the improper regulation.

CF has directly damaged my lungs, sinuses, liver, pancrease, digestive tract, and joints/bones. Each CF patient is affected differently. While some may experience severe issues with their pancrease others might not have any issue with their pancrease at all. However, nearly all CF patients do experience respiratory issues; some mildly and some extreme. With all patients, as the disease progresses so does the damage to the organs, in fact many patients at some point face needing an organ transplant.

Much of today's medical research for CF involves correcting the cells ability to transport/regulate the water and salt. While many drugs in the past have "treated" the side affects, the new drugs are being developed with the hopes of "treating" the cause. The drugs that are/have "treated" the side affects, have given us patients a much better quality of life and many of us are able to live longer. So, the idea that the drugs on the horizon can "treat" the cause is bringing so much hope to our community.

Many of you have supported the CF Foundation with monetary donations thru events like the Great Strides. You monies have been instrumental in developing these new drugs. They are life saving. They are bringing about better quality of life. They are allowing us to seek our dreams, hopes and wants. Thank You!

So, while many in the CF community refer to CF as a lung disease it truly is not. The lungs are a very large organ that does get irreversably damaged from the cells inability to transport/regulate water and salt. I do think CF got coined a "lung disease" because of just how much damage and treatment goes into treating the lungs or attempting to delay the damage in hopes of prolonging life.

Please send in your questions. No question is silly.

~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'

CFRI Conference

Two weekends ago I had the greatest privilege of attending the 25th Annual CFRI Conference in San Francisco, California. I went as a representative of my CF care centers Patient and Family Advisory Committee.

This years conference was titled; 'Facing CF Together with Confidence: Connecting Families, Care Teams and Scientists.' The conference is such a valuable opportunity for which I am beyond grateful to have had. It brings people together to share the latest information about CF treatment, research and services. Speakers come from across the country and from Canada to update us on clinical developments, ongoing research, and new directions for CF care.

I have to admit I was a bit terrified to attend. I was unsure how I might react to information that was less than favorable. That I would be an emotional wreak, unable to put an intelligent sentence together and thus unapproachable. But I surprised myself. I held it together, well, most of the time. I spoke with people from all different walks of life, each connected to CF in a different way. Some were parents striving to understand how best to help their child. Some were CF patients who were attending for multiple reasons; networking, getting the last information and simply to connect with those battling this disease along side them. Some were researchers, scientists and physicians all trying to find a why to help us, to give us a better chance at survival, to help cure this devastating disease.

I traveled alone this year and was hesitant to begin the first conversation upon arrival. I didn't want to offend anyone, I didn't want to be intrusive and mostly didn't want to seem over zealous or needy. There were many booths from many different companies who service CF care. I began by going to each booth, learning about their products and getting tons of awesome free stuff.

I attended the orientation meeting and met some friends, in fact, from orientation we went out to "network" at which point I meet more folks. The relationships formed almost instantly. There is an unspoken understanding. No need to example anything. Support in the form I have never known. Ever. I get weepy just writing that.

Probably the most amazing part for me is that I was one of the youngest CF'ers in attendance. Many are in their 40's, 50's and late 60's. I have heard of these people, these mythical beings who are some how living into old age, but never have I had the pleasure of laying eyes on them. Probably one of the most inspiring moments in my life. Seeing these people who are my grandmothers age living and thriving with CF. LIVING and THRIVING. This changes the game for me. Seeing with my very eyes that this could be me. ME. OLD. GRAY HAIR.  Now, I am sure that as your reading this your thinking; yes, Kari, that could be you, why would you think anything else? Because I have meet more people who have died than I have who are reaching 40+ years. Because this disease is still consuming young people at unacceptable rates. Because the medical community and research community are working day and night to slow the progression and find a cure. So, for me to witness this. To meet them. To speak with them is beyond motivational. It is beyond hope.

I am thrilled to be part of this community. I hate the suffering CF imposes but the people who are facing this battle with me are truly remarkable.

I attended a few sessions that different speakers were touching on and two have changed my life. No two ways about that; changed it forever. I am still wrapping my head and heart around the information and will share when I can put the thoughts into a comprehendible post.

~Doodlin'

Timbers' Bendik Named MLS W.O.R.K.S Humanitarian of July

I came acrossed this article and it had me yelling "Right On!" so I thought I should share it with you all. Whenever someone in the spotlight does something good or helps someone besides themselves it is news worthy. Plus I happen to biased in regards to the charity and topic in which Bendik is supporting. Below is a snippet of the article but please do read the entire write-up it will make you smile....

You see, Gavin has cystic fibrosis and Bendik, the Portland Timbers backup goalkeeper, has used his notoriety as a professional soccer player to support the Cystic Fibrosis Foundation. It’s a passion that has led Bendik to raise close to $3,000 through the Portland chapter of Team Gavin as a part of the Cystic Fibrosis Foundation’s Great Strides National Walk Event.

Those efforts have earned him the MLS W.O.R.K.S. Humanitarian of the Month award for July.Bendik and a handful of teammates participated in the May 19 Great Strides event at Oaks Park Amusement Park or donated gear to show their support. Along with the money generated at the local event, Team Gavin raised more than $30,000 nationwide.

“It’s good to see how the Timbers and the whole community in Portland came out and were full on behind us,” Bendik said. “It was awesome. The team is all pretty hyped about it, and we’re going to do it next year.”

Read the full article here: http://www.portlandtimbers.com/news/2012/07/timbers-bendik-named-mls-works-humanitarian-july

~Doodlin'

A Little Dream; Realized

For a couple of years now our CF care centers advisory board has dreamt of having a formal support group and I have been quit the annoying advocate for it. A safe place for CF'ers to open up, to share in their journey, to find encouragement when things seem daunting, to celebrate new journeys and new successes, have a place to socialize and most importantly to have a group of others who are walking in the same brand of shoes (the sizes vary!).

After years of debating the ways to go about this and of trying to figure out how to coordinate such a group we have finally put together our first meeting. The meeting was small but amazingly awesome. There was conversation, laughing, brainstorming and all the things we humans do when we get-together when we socialize. Our small little CF center just took one step for mankind and one GIANT leap for those with CF.

For so long I have lived with a disease that not only isolated me much of the time from the things I loved but it also placed limitations on my relationships with others like me. Today's technology has began to bridge that gap, while not perfect it is something better than what we had. nothing.

We as a community as a whole are also learning ways to safely host multiple CF patients within the same room without subjecting them to each others germs and possible cross contamination.

I am elated. I am beyond thankful. I am feeling as thought one small victory in over-coming the hurdles that CF builds has been won. I am so proud of my care team for not giving up and running with my crazy notions. This is something so close to my heart. Something I needed like 10 yrs ago. I hope that no CF patient has to go through such loneliness, such feelings of separation, such feelings of longing for socialization during isolation.

Humans by nature long for and need to socialize on some level with those whose capacity is like theirs. There is real value in developing relationships with those whose life experience is similar to ours. We all are better off in some way or another.

Do you participate in a support group (any group not just CF)? What is the most valuable thing about your support group?

~Doodlin'

They Think I Have Something to Say....

In honor of National CF Awareness Month, these wonderful folks took time to gather some information about Cystic Fibrosis. They even thought I had something worthy of note to say. Check it out.....

WEGO Health Blog: Roundtable on Cystic Fibrosis

~Doodlin'

Let's Find a Cure...Please

This year I am joining Portland Timbers goalie Joe Bendik in not only bringing awareness to the Rose City but also to help fund a cure thru research. Joe's nephew Gavin has CF, he inspired by Gavin, he just like all who love Gavin want him to have a future free from this disease.

I am a 29 year old CF'er who is inspired by those around me everyday. I have friends who are doing amazing work to make this world a better place. I want so desperately to be apart of that change but for many reason's I can't. CF holds me back. Holds me in place where I must fight for every breathe. 

In my lifetime, I have seen huge leaps forward in research. That research then produced medications that is not only pushing the life expectancy but the quality of life we have. Research comes with a very large price tag. 

Please help myself and Gavin and the thousands just like us have a future. A future where our ambitions can be realized. A future where we can travel to far away lands giving aid to those who need it. A future where we can play soccer. A future where any thing we conjure up in our hearts and minds could have a possibility.

Click here to donate 

~Doodlin'

Two Birds with One Stone

Saturday I was invited to run another 5K in support of Child Abuse Prevention that was being hosted by a number of different State organizations. I was hesitant simply because I didn't feel prepared to run with a group whom I had never run with. They are a great group ladies who are doing inspiring things but running with anyone but my hubby and close family is intimating for me. With the hubs encouragement I decided to join them and do my best.

After the run I was thinking that not only am I keeping my lungs and body as healthy as possible I am also helping bring awareness for some vulnerable children. Thus as the saying goes "killing two birds with one stone." The ladies where amazing to run with and the coffee and girl time afterwards was such a nice little treat.

Here are my results, not too shabby for feeling unprepared:

~Doodlin'

Recycle WHAT?

You recycle paper? You recycle your soda cans? Why not recycle yourself?

 

In all seriousness, we should all think about it. About being green. 

Okay, this is my attempt to be light hearted and find a small slice of humor (get it...slice...) mwhahhahha. 

But really... go get educated about being organ and tissue donor. And then educate your friends too.

www.donatelife.net

~Doodlin'

Please Excuse the Tears, This is Real Life......

Currently, I serve as the Chair on our Patient and Family Committee that the clinic put together as a recommendation from the National CF Foundation. Each official CF care center gets backing from the CF Foundation in efforts to attempt to ensure each care center is providing the same standard of care. With this backing comes financial resources to fund such things as our annual forum. We (patients and family) work with the nurses, doctors, assistances, etc to help find ways to better our center. In the beginning stage of developing the committee (6 yrs ago) we hashed out many different ideas and one of the many things we decided to do was host an annual forum. Each year's forum has a topic or a rough topic, we're getting better with nailing down a topic each year. But the idea is to give patients, family and support people the ability to hear first hand what is happening in the clinic and what we think is important to focus on. We bring in keynote speakers that have experience, knowledge, and degrees that cover what topic the committee has chosen.

I had the privilege of being a participant in the annual forum as a panel speaker for which they allowed me to share my experience on this years topic. I was the first of five panelists to speak; which included a brief statement about who you are, age at diagnoses, and treatment regime. Then we were asked questions about our experience with CF along with what role has exercise played.

Silly me, got all sorts of emotional when talking about my ability to run. I talked about how just before each race as the crowd is counting down.... 10.....9.....8; my mind wonders to all who have succumbed to CF and that I am running for them. They and there spirits are what carry me thru when I want to give up. I always have tears pouring down my face as I run thru the start line. Knowing how much each CF'er would give to be able to run or walk for that matter across the line (I just happen to be healthy enough right now). I talked about how wonderful my husband is in supporting me with exercise. How exercise in conjunction with my g-tube feedings has stabilized my health. I spoke about that fact that running and/or exercise for that matter are not my favorite thing to do but that I have seen an increase in PFT (pulmonary functions) which gives me solid reason to persevere. I encouraged parents to allow their children to engage in whatever form of physical activity they wanted (with dr. approval) because it will help them in so many ways. It builds confidence, give them a reason to do their meds (can't play soccer when your lungs aren't working), gives them a moment to forget about CF and just be. I also talked about how we as adults get weighed down by 'life' but its so important and can be something the entire family participates in. I know my hubby and I do a lot of working out together, and its fun to be together doing an activity that will keep us healthy.

As each panelists spoke, each conveying their story, their truth, their life with CF, they too couldn't help but let the emotions pour out. I was thinking that this isn't a public speaking event of what if's or if you choose this then x will happen. This is real life. This is our lives. One gentlemen spoke about getting an infection that nearly caused him to draw his last breath and how he has fiercely fought to rebuild lung function thru exercise, he has rebuilt lung function back up to 50-60% and is grateful for every %.

The biggest point I hope to have conveyed was that our bodies aren't just all CF. Our bodies need full comprehensive care. Exercise just happens to help reduce affects of CF and many other potential health problems. So, as we are living longer and being blessed to live in this era of amazing medical advancements we need to keep our bodies in tiptop shape so that we can reap the most reward from those advancements.

~Doodlin'

WEGO Challenge: My Writing Style

Today's prompt from WEGO is to describe my writing style.

Writing with Style


I begin writing a blog post mentally long before I actually sit down and lay the words out with my fingertips. I can so eloquently but words together in my mind, that I at times, actually think that I could write a book. Then something happens as I begin to allow the word from my brain flow to my fingers. I begin editing, self-doubting, rethinking to the point that what I see on the screen is barely recognizable as what was written in my head. Working on this. Working on transferring exactly what is upstairs to this blog or my journal.

My method of writing is a bit free-flowing or without structure. But I generally start with the title. The title helps me contain all the words that whirl around in my mind into a more manageable comprehensive set of sentences. These sentences then evoke emotion. For me, I write publicly for two reasons; to educate and to let others see the emotion behind every action, decision and thought behind this journey of mine with CF.

Once the title is formulated, the words are group accordingly and the emotion is paired with the words I then can begin to write to you. Because of this process, it helps me use writing in a therapeutic way. It allows me to place words with emotions that I am not able to quit understand or vis versa. It helps me make sense of things.

The other amazing part of blog writing and blog reading is that it connects us. It allows us to see/read one another stories, which hopefully either demystifies or educates us about our world, about the people in our world, to understand that we each have struggles, triumphs, and that by learning from one another we are creating a more understanding place to thrive.

I enjoy writing from the heart and enjoy reading others who write from the heart.  Writing with such technicality is necessary at times to help convey facts but also placing in the human element is what I find key and very difficult because it causes you to open your heart, to become raw. Being raw is to be vulnerable.

So, what's my writing style. As from the heart as I can muster. As comprehendible as I can get but sometimes words are hard to place with emotion or give voice to the human element.

~Doodlin'

WEGO Challenge: 10 Things I Couldn't Live Without

I am so excited to be participating in the Health Activist Writer's Months Challenge by WEGO. It started April 1st, so I am a bit late to the game. The challenge is to blog all 30 days of April and each day WEGO has a different topic or prompt. We (participants) are asked to be customize each prompt as well as be as creative as possible. So without further ado.......

10 Things I Couldn't Live Without

This is tricky. At first I start to think about my daily routine and what I value most within that routine, like my morning cup of coffee. My mind also wandered to the list of things I use when I am stressed or when I am making a trip to the hospital. After much thought and deliberation I think I landed somwehere between the necessities and wants of life.

1) God. While I am just beginning this walk and developing a more intimate relationship with Him, it has been Him all along who has kept me alive. He is the beginning and the end and all the in-betweens. He fills all the gaps.

2) My family, friends and wonderful support group. It is because of these wonderful folks that I am able to laugh, thrive and feel as though I am more than CF.

3) Animal companion. I have for the most part of my life spent it with a dog. They each have given me a sense of independence and companionship that is difficult to explain. When the emotions are too difficult to verbalize my dogs have been their to catch tears without judgement or needing an explanation. They have also been a driving factor in my over-all well being by forcing me, at times to literally get out of bed, because they need tending to. With a disease that affects the lungs, being stagnant for long periods is not good, the lungs need to be worked to get all the junk out. I have found peace in walking and now running with my animal companions.

4) A good book. There really is nothing like a good book. Escaping reality through the throws of a complex character is so thrilling. A good book can entice me to spend the day wrapped in a blanket with my animals while I throw myself into the characters world leaving my world behind for just a little while. Plus what else would I do with the major of my time when doing treatments?

5) Cup of coffee. Yep, there she is. It's not about the caffeine. Okay, maybe a smidgen. In all honesty, I just love the comfort of a steamy cup of coffee in my hands and to sip as I go about my morning to-do's.

6) Pasta. I LOVE me a good plate of pasta. Pretty much any kind of cheesy-noodle-with-sauce concoction will please me for days to come. Especially if there's leftovers.

7) My meds. While this relationship is one of equal amounts of love & hate, I really could not live without them. I have a motto; doing all my meds is not submission to CF but freedom from it. They are living saving but life consuming. They are givers of quality of life while taking precious hours away. Love/Hate.

8) A comfortable dress. Having a g-tube has fostered this dependency. Jeans that fit can hurt the g-tube area because of how much they hug the stomach area and I refuse, REFUSE to wear those pants that allow my nether regions to boil over. But a nice fitting dress allows freedom from the pinching, squishing, and smashing of the g-tube area. I know woman have fought for generations for our right to wear pants as equals to men but ladies a good dress is amazing.

9) Sports bra or a bralette. Again, this is because of medical devices. When I had my port-a-cath, these sweet little inventions allowed me to retain my modesty whiles doctors and nurses from around the world probed and prodded the darn thing. They also serve a purpose besides holding lady parts they also can hold tubing from getting all mangled up and pulling on the IV. You see, one simply wraps the tubing into the straps over even nicely tucked into the bra with the nice little lady parts.

10) Generosity. Without the generosity of others I would not be able write about the first 9 items on this list. It was the generosity of my family and friends who brought me to Christ, gave me a dog, purchased a good book, made me coffee and pasta, haveslaved for years to develop medications that prolong life, that gave me a dress for my birthday and suggested sports bra to keep my modesty.

And, there you have it ladies and gents. My couldn't-live-without list. Ask me to write about this again in 30 years and I am sure it will have changed. But for now, today, in this place in time this is what I long for and need most.

~Doodlin'

National Donate Life Month!

April is National Donate Life Month. Despite all the amazing advancements in medicine and medical technology there are still an obsurd amount of patients needing donations than there are donors. Organ transplant gives hope to people suffering from varies kinds of organ failure.

There are many myths about organ donation that are expelled here at Donate Life. Even if you want to donate but think you can't because of some underlying issue, please consult with your physican. Even I can donate!!

I have meet countless CF'ers who are thriving today because of lung transplants. Without that life saving gift they would no longer be a light paving the path for all of us who may one day face the fear of needing a pair of lungs but no donor.

I encourage you to think about it, mull it around in your mind, pray about it, get information about it, and simply consider it.

A heart felt THANK YOU to all the donors and their families. Many many thanks to all who have spoken out about their journey of going thru a transplant.

~Doodlin'

A Bit Here & A Bit There

CF is in the news people. Some interesting articles below:

Doing Something to Help! This article I just love. She is doing something to help improve the care she and others like her get. I love it because so many times you hear people complain, but rarely do they step up and help change the situation.

and

Kalydeco and its Expense. Being a patient and knowing exactly how much my medications cost without insurance are is eye opening. It has allowed me to understand why having health insurance is so critical for folks like me, but as you read this article you'll be able to see how much a drug like Kalydeco costs. Let's hope that insurance companies will begin to cover it for those who need it.

As always, thanks for reading!

~Doodlin

The perfect Christmas gift!

Have you ever seen someone hurt from the inside out or even the outside in? Have you ever wished you could do something anything to ease their pain or suffering? What if I told you that you could ease the outside pain which would ease the inside pain by donating a few dollars, would you do it? Really....think about it.....


It isn't often that we can do something to help right now. Most anguish is deeper than skin. Here is an opportunity to help right now in real life. While you will not be solving all their problems you will be helping to ease their pain both inward and outwardly. Really...... think about it.......


This would also make a wonderful Christmas gift for someone who has everything or even as a family.


I want surgeries for Christmas


For more information about the organization written about in "I want surgeries for Christmas" visit Dr. Hodes website


~Doodlin'

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'

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'

Wrapping it up

As we begin closing the books on May 2011, I want to conclude CF Awareness Month by saying this....

CF is horrible, not matter what side of the coin we look at.
CF has taken many things away from me and others with CF.
CF is painful; emotionally and physically.

... BUT...

CF has taught me many lessons for which I am SO grateful for.
CF has made me compassionate.
CF has made me fiercely independent.
CF has made me wise beyond my years.
CF has made me see what a blessing every breath we ALL take is.
CF has allowed me to be vulnerable.
CF has shown me love beyond measures.

... AND...

We might find a cure in my lifetime, but either way I have GOD on my side trumping EVERYTHING.
My life is fantastic because I have chosen mind over body; not every moment, but a good chunk of it.
We all will die, no pill or cure or potion or lotion will change this.

... THEREFORE...

I promise to be passionate about life until I take my last breath.
I promise to attempt to make the world better while I am here or at least make a difference.
I promise to never loose hope in life and justice for our out of control world.

Thank you for taking the time to read this months posts about Cystic Fibrosis. Knowledge is power!

Life is rich and messy. I hope I have enriched it.

~Doodlin'