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'