Tuesday, May 1, 2012

Its Moving Day

After much thought and deliberation I have decided to move this blog. I began this blog a few years ago not really knowing what purpose it would serve in my life or just how it would serve the CF community as a whole.

As of today please visit or follow me at Illness Inspired Words. I believe this new location is much more representative of what my blog is. A collection of words that are inspired by my journey with an illness; CF.

I hope to see you over at Illness Inspired Words soon!!!


Wednesday, April 25, 2012

Third Person Memory: Race for The Rose's

Today's WEGO blog challenge was to write about a memory in third person. So, no usage of "I" or "me" when describing the memory.

The memory is of one not too long ago.

In September 2011, she was hospitalized to treat a complication from Cystic Fibrosis, pulmonary hemoptysis. After being released from the hospital she worked slowly to regain lost lung function. Her method was to be mindful and methodical about each exercise as to not cause further damage to her tender lungs. Over the months she battled a few bouts of the common cold, each time making sure to increase her nebulizers by adding one additional treatment per day as well as modifying her workouts. She could have given up. She could have said I have to much on my plate as it is. She could have placed her running shoes in the junk closet. To be honest, most people would not have blamed her. Most would have thought she was still strong. But she didn't though, she never threw her hands in the air gesturing submission. Giving into CF was not an option; no way, no how.

She continued to push on. Taking two steps forward and not letting the one step back detour her. As time went on she gained much strength and stamina. Her lungs were finally able to withstand a little hard work. She finally was able to run 2 miles none stop. As weeks pasted she built upon those 2 miles, adding a tenth to a quarter mile each week.

On April 1st, as she waited with the thousands at the start line at the Race for The Rose's, tears weld up in her blue eyes and trickled down her freckled face. Tears of jubilation. Tears for all those who have lost their battle with CF. Tears of recognition of how blessed she is to be standing at the start line about to run for the next for 35-40 minutes.

Running the 5k was more about her raw determination than anything else. Her ability to dig deep mustering what little strength the CF left her to complete her goal rather than a goal place upon her because of the CF. As her foot touch the finished she looked over at her husband beaming with pride. No feat is too large. At least in that moment.


Tuesday, April 24, 2012

Recycle WHAT?

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

Recycle Yourself: Be An Organ & Tissue Donor sticker 

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.


Thursday, April 19, 2012

Thankful Thursday: Companions of the Female Kind

I am forever grateful for my many wonderful and amazing girlfriends. These women keep me grounded, focused, supported and can offer up a laugh like no other. Today, I was in the presence of a few of these ladies and I feel so refreshed, rejuvenated and loved.

In a society that places women on display to judge one another, to pit one against another and to pick them apart as if they were a crispy chicken leg rather than a human made in God's image. I am beyond thankful for the gals in my life who see beyond those lies, who can sit down next to me and have compassion. They give me inspiration, edify me as a woman, as a wife, and as a fellow companion.

These women are fierce, smart, determined, mommies, full-time-employees, full-time employers, wife's, and so much more. I am so blessed and thankful for you all.


Monday, April 16, 2012

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.


Sunday, April 15, 2012

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.


Friday, April 13, 2012

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.