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.


Monday, April 9, 2012


There is great hope for the future of us living with CF and generally I am optimistic about my future. But I have known many whom have succumbed to this disease. And the many pills, medical treatments and hospital visits that I endure serve as a constant reminder of my race against time with this progressive disease.

Sometimes, hopelessness hides in the shadows of my heart, waiting for the slightest palpitation so that it can sneak in. My family and friends depend on me. They need me to be strong. They pick up cues as they walk with me down this path. If I have hope, they feel hopeful. So, how do I keep hope alive when I don't feel very hopeful?

Throughout my journey I have had so many pioneer the way, many who have inspired me, many who have encouraged me. The one thing that has always been abundantly clear to me is that these individuals all exuded gratitude. I am a firm believer that one's attitude greatly impacts their mood, health and overall well-being. Therefore, having hope is directly linked to my gratitude. Below are a few things I do to keep my attitude in check.

  • Pay attention to my thoughts. Focusing on the postive thoughts rather than the negative ones. For example say "I am thankful for having heath insurance" rather than "What a hassle this insurance companies is!" then repeat over and over and over.
  • Staying in the moment or immediate present. Asking myself what I am grateful for right now, today. My family? A roof over my head? I start with the simple things in life that I often take for granted.
  • Take time to regularly think about things I am grateful for. I recently started a "thankful Thursday" post to write each week. This helps keep on the task at hand, to force me no matter what my mood is to stop and think about thankful. Writing has been incredibly therapeutic and healing.

While this all sounds well and good, it sometimes can be difficult to count our blessings. But once you get in the habit it truly becomes easier. It allows you to take what might seem hopeless and see it from a different perspective; thus staving off hopelessness from entering your heart.

Here are two more tips that B and I do to keep hope alive during the really hard times:

We try to keep our expectations in check. Hoping for a cure can keep us going but it can also be devastating when it doesn't happen fast enough. Miracles can and do happen! And it's also important to stay grounded in reality. Having faith with reasonable expectation helps us stay firmly planted on the ground as much as possible.

We take time to grieve. Crap happens. Bad things happen. Which usually causes one or both of us to respond with shock, fear, anger and often despair. We have learned that we have to allow the emotions to run their course, to validate them and to give one another time and space to grieve. This is so important for the healing process. However, it's also important to not get 'stuck' in that/those emotions.

For us faith in God has definitely given us more hope. When times are really tough, we can find comfort knowing that there is something bigger than us; that there is some meaning and purpose for it all, even if we can't see it or understand it.


Saturday, April 7, 2012

Therapeutic Parenting or The Lack Thereof

A few days ago a friend wrote a blog post about therapeutic parenting, at scooping it up, that really had my head spinning. Please go read it while having an open mind of how this could possibly relate to someone with  chronic illness, then hear me out.

I commend and praise the Scooper and her husband for recognizing the need to parent ALL their children in a responsive manner rather the a reactive manner, while they admittedly stumble in this process, they are striving for it. Because as we children grow to become adults we learn how to deal with the world by how we were parented. Sure, we can "change" that pattern with a lot of work but it would be so much easier to learn from the beginning how to be responsive rather than reactive.

The three principles the Scooper lays out as she sees it is: disarming fear, teaching a person to feel love and to connect, and how to manage stress.

Let's start with disarming fear. I won't recreate the wheel so if you have read the post then you understand how trauma, loss, grief, etc begins the cycle of fear. Well, wouldn't a chronic illness like CF begin the cycle of fear? The fear of each time you start feel slightly ill will land you in the doctors office or worse in the hospital or even death. The fear of what each test result means for your future. What about the fear you sense from your parents or caregivers as a child or teen when they are given news about your health? This can all stimulate fear driven reactions. Now, not all people with chronic illness or great trauma have this experience but I would wager a lot do, maybe they know it or not. But stop and think about some things you have done, were they driven by security and love or fear? I can tell you from experience that things I did and still do are driven by the fear that resides deep down.

Example: I wrote a post about love thru my diseased teenage eyes, the "love" that I felt I needed/wanted and was willing to subject myself to was not driven by the feeling of security but rather from fear of not living long enough or even being of value to experience true authentic love. I struggled to connect in a healthy way.

Moving on to teaching a person to feel love and to connect. For me there is so much behind feeling love. The basics start from how my parents showed love; positive affirmations were scarce while negative affirmations were constant in our home. Looking back I know why. We were parented by fear (which is based on how my parents were parented and how their parents were parented, so on and so forth: chain reaction that was never corrected or attended to). My parents divorced early in my childhood and for the most part they didn't get along {insert more trauma}. Therefore, how they outwardly showed love was thru fighting over us, step-parents not wanting bio-parent to have direct access to us, etc. What does this pattern show a "normal" child let alone a "traumatized" child? Then, heaven forbid a bio-parent dies, which in my case happened. So, now we're adding more trauma onto an already traumatized child, I do want to be clear that the death of said parent is no ones fault, but trauma nonetheless. My personal story involves adding one traumatic issue and/or experience after another while adding little to the healing process. This I believe was a direct result in my inability to connect with men and women appropriately. I had a hard time developing friendships with women and sought in appropriate relationships with men.

Are you still with me? Hang on just a bit longer.......

The last is how to manage stress. This I have failed at. Completely and utterly failed. With all the aforementioned, how could I rationally deal with stress. I have no idea how to coup. NONE. I lashed out, I tried to commit suicide at the age of 16, I wanted to lay down and die. The level of stress in each person's life is difficult to measure as we all have it. We all have developed ways of dealing with it. Some people are extremely wise and understand how to manage in a constructive way, while others have parents like the Scooper and her husband who recognize the need to parent in a way that addresses, supports and teaches how to disarm fear, how to feel love, how to connect positively and how to manage stress, however many like myself have so many layers that our vision is clouded. We so desperately want to be able to have composure, to be constructive, to come out on the other end whole, but can't or haven't learned how to.

Managing stress is something I still am working on building a foundation for, because in order to have a solid foundation, I have to learn to disarm fear and feel love and connect to others first. This is something I have been working on for roughly 10 years, it takes a long time to reverse and relearn.

So, while her post was about parenting, I read it thru my eyes, my experience with trauma, my struggles with fear, love, and stress. I read it from a stand point of if B and I have children, how am I going to be able to teach them what I wasn't taught or rather how do I teach something I am still in the infancy stages of learning?

Such a thought provoking topic.


Friday, April 6, 2012

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.