Monday, October 1, 2012

Body Image...A Few Words

Over the past few months I have noticed that a couple of my favorite bloggers have written about their body image in relation to weight gain/loss. On so many levels I can relate to their struggle with this love /hate relationship with weight as most women in America can. The hardest part is deciding to be healthy (have a healthy BMI) or being accepted by societies standards. This seems like an obvious choice, but it is? Not. Even. Close.

Prior to having my g-tube placed I was commented on all the time about how lucky I was to be thin. Many oggled over my ability to wear a size zero at the age of 25. Yet, at that time I still felt as thought I could slim up a bit, exercise to flatten my stomach a bit more, etc. Fast forward to nearly 5 years of having a g-tube and at a healthy BMI of 21-22, I look back at photos of myself and am dismayed that anyone including myself thought I looked healthy. My hip bones, shoulder bones, elbows, knees all protruded and you could easily count my ribs. Healthy? Nope. It took a huge dive in my health, like emergency intervention, to get me to agree to the g-tube.

Let me be very clear. There are just as many health issues that stem from starvation, malnutrition and being grossly underweight as there is with being overweight or obese.

I am now a size 4-6 and fluctuate between 124-128lbs. I am still in the process of accepting my new body. I have days that I feel fat. I have days that I feel perfect. I have days that I don't even think about it. The best thing I have done to help my perception of my body image is to exercise regularly. I feel happier about the weight gain. I understand on a different level that my body needs fuel and a healthy percentage of fat to muscle ratio to function the way God intended.

When I am at a healthy weight I have more energy which means I can engage in my own life more. I have longer lapses between IV's and hospitalizations. My lung function has increased and become more stable. I can run more than a mile because my body has the physical means to do so because of the proper nutrition. ALL is good!!

I do know one thing, I never want to go back to being a size zero. I never want to go back to feeling absolutely exhausted all the time. I never want to feel as though my body is largely depleted of everything.

Such a tricky topic. Finding the happy spot for each of us entails a different journey for each. For me, finding and focusing on things that bring me joy and are healthy have helped tremendously. Wanting to be active in my life as a new bride was a large piece for me. Then, I added running and started to experience all the ways running has helped me transform my perception about my body. Then, over time all the wonderful health benefits I started to reap; better lung function and better diabetes control to name a few.

I am now in a happy place. There are times when the jeans fit a bit snug and there are times when the jeans are a bit looser, for me this is normal as my body is not one size day after day. Just like the seasons change so does my body. I have found a happy place with this and am willing to work with it. I am sure as I age, I will come to forks in the road that force me through the process of reaccepting my bodies lot in life. I hope that I can do so with grace and dignity and shear appreciation for all the incredible changes my body has sustained over the years and still functions.

I hope we all can someday find our own happy place. Our own form of acceptance. We are all beautifully made and made for a purpose much more important than what the scale or society tells us.


Thursday, September 27, 2012

It's All About the Routine

My struggle with CFRD (Cystic Fibrosis Related Diabetes) is no secret to those who know me and read this blog. I struggle with diabetes more than I do with my CF. There are few factors that aid in the struggle. I wasn't diagnosed with CFRD until I was 13 or so, whereas I haven't known life without CF. Another aspect that makes diabetes a struggle is that it requires multiple injections a day and numerous finger pokes whereas their is no poking on a daily bases to treat my CF.

I humbly admit that I was far from the model diabetes patient. For many years I did the bare minimum and tried to forget about it. Something changed about 9 years ago, I started to care. I started to see the importance of getting this aspect of my care under control. I began with baby steps so that I didn't overwhelm myself and throwing in the towel. I started to by committing to checking my glucose levels 3 times a day. As this became a routine occurrence each day I added something else. I kept building on this model and I started to see and feel results.

I am a learn the hard way kinda gal. I have to feel the impact before action is taken. It simply isn't enough to hear the statistics or even have the unpleasant symptoms described to me. I have to be affected to change course.

Fast forward to present day me. For the most part I have this diabetes thing under control. I have fit it into my life and it feels rather natural. I have a routine. Routine keeps me healthy. Routine keeps me on track. Because of routine I have learned what bumps me off course and what it takes to get back on course.

Of course, I could do even better. Which I continue to evaluate and make changes as I can handle them.  I have learned a lot from having diabetes. I have learned that diabetes truly requires one to be on top of their care for the immediate present while many of the treatments for CF are to help prevent damage in the future. Meaning, if my blood sugar drops too low I immediately feel the symptoms or worse will need to be rushed to the emergency room, but with CF if I skip a treatment there are no immediate symptoms.

This is why for me having a routine is essential. My routine helps me always know what's going on with my diabetes while being proactive with my CF. My hope is that I can keep my body in as good as healthy at this very moment as well as in the future so that I can be present in life with my family and friends.

A motivating saying I have posted to read every day is ....."Doing all my meds is NOT submission to my CF but rather FREEDOM from it." This is easily transferrable for any illness we struggle with. A routine allows this statement to be true.

Do you thrive in a routine?


Tuesday, September 18, 2012

The Crepe Conundrum

The other night B got home before I did and I had asked him to start "thinking" about what he wanted for dinner. I usually try to meal plan the week before for the upcoming week so that it eliminates the stress of creating dinner each night. Truth be known I don't mind cooking or the clean up thereafter but I really hate trying to "think" of something or creating a meal out of what is in our cupboards. Come on, I know I am not alone in this?!

When I arrived home B had began making "breakfast" for dinner. One of my favorites. We usually do pancakes or waffles with bacon or sausage. But, yesterday he enter a new realm, a realm inwhich I am terrified. Crepes. He had read the instructions on the side of the pancake batter about making crepes. I have never made crepes and its one of those recipes that terrifies me. Crepes just seem so delicate and danty. But there he was just whipping them up like he'd done it his whole life. They were delicious!!

People tell me all the time how brave and stronge they think I am. I assure you that where I am strong and brave I have equal areas of weakness.Your areas of strength might be were I am weakest. Like B, he did not fear the batter and saw that crepe-making was just as easy as pancake-making. I did not see it that way. I was afraid of the crepes. Yes, this is over simplified but is it?

I started thinking about what other things I was afraid of that I really shouldn't be? What wonderful things am I holding myself back from that could easily be hurdled and give great joy?

Still not confident in crepe-making but thankful God gave me B so I could enjoy them at home.


Tuesday, September 11, 2012

Our Anniversary Week: Few Words Lots of Photos!

We are back from 9 days of glorious togetherness. After nearly 5 months of only having one day a week together we capitalized on the fact that our anniversary fell on Labor Day this year. B was able to take 4-days off from work, plus Labor Day, plus the weekend pre and post Labor Day!! We planned a great adventure, something I have never done, yet B grew up doing; backpacking.

We hiked with packs (backpacks load with the necessities of life for a few days) to 3 gorgeous lakes near Sisters, Oregon. 

Me with a 30lb pack on my back; after crossing a creek!!

B, with the heaviest load!
The first day was beautiful. Not too hot or too cold which made hiking relatively easy. Or easier than I had anticipated it being. I just love how every year we have celebrated our anniversary in different ways which has allowed us to see each other in different situations, under different circumstances thus lending to a deeper understanding of each other. B is a natural leader when outdoors and I am a happy follower, the dogs however don't know which direction suits them.

The first day we hiked fairly early in the morning so that we could set up camp and have time to relax before evening set in. 

#1 rule for survival is make camp and get a fire started. My leader taught me this.

After setting up camp, we took advantage of the amazing views. It was so great to not have our cell. phones, laptops, or even a radio. We simply sat on the banks and listened to the sounds of nature. I know this sounds hooky but its really calming and aided to a detox of life's frustrations.

I mean look at this view-

We set up camp just across the lake amongst the patch of trees.
Night fall sets in much earlier it seems out in the wild, probably because there are not lights to ward it off. So, I took to the tent to get cozy and do my nebulizer treatments. Yep, CF care doesn't stop even in the wild thanks to my portable battery operated compressor. I forwent the feeding tube feedings because I only do it 3-4 times a week and used the days camping as my off days. It should be noted that while in the tent I had ridiculously crazy hair due the static.

The first night was cold. We even each had a dog in the sleeping bag with us and we all were still chilly. Probably the location and altitude we were at.

#2 rule for survival is that snuggling close is essential for warmth. My leader taught me that.

Needless to say, we all were thrilled for the morning sunshine!

After letting the sun warm our bones, we packed up camp and headed to the second lake. For which we completely forgot to take pictures of. But I can assure you it was just as beautiful but also the smallest in the chain of three. The second lake was not far from the first so we hung out for a bit and continued on the third and final lake.

Once we got to the final lake we set up camp once again, gathered wood for the evening fire. The fire was the only way we ate. We shopped at  TJ's for dried foods that could easy be rehydrated with boiling water. It worked out great because dehydrated food is light when carrying everything in one's pack. We had oatmeal each morning, with hot tea. Had some indian fare with naan for dinner one night, mac n cheese another and of course hot coco. These types of foods were tasty yet easy to prepare with some hot water. We also had things like energy bars, crackers, etc. We used a water pump (very light weight) to get our drinking water from the lake. That water is naturally so refreshing, I actually am missing it. 

This entire experience was refreshing for my soul. The quietness, the calmness, the majesty of it all was surreal. I think most who have chronic illnesses and rely heavily on modern conveniences like electricity or running water to maintain health are afraid to do such things. I was. What if I got sick out in the middle of no where. What if, what if. I prepared as best as possible, had just visited with my doctors and took the leap. I am so glad I did. I actually wish the battery life in the portable compressor lasted longer so we could have spend some more time out there. I packed insulin and the neb treatments, they were kept cold by having them in tupper ware containers and placed in the lake (weighted down so they didn't float away). Then while hiking filling a water bottle with the cold lake water to keep the temperature down. In the end, it worked out wonderfully and I can't wait to explore more of our beautiful state this way. 

We were to the far left of the Three Sisters at the bottom of the far left ridge that has just a dusting of snow!
Happy 6th year to us. Each year presents new challenges and new accomplishments; both collectively and individually. I am so glad God placed us together to enjoy this journey with. B, you make me a better person, you gently push me to reach new heights, you allow me room to grow and I look forward to many more years with you. Together we can do anything, this I am sure of!

After backpacking we drove into Bend to shower at Gregor's (my bestie). Visited with her a bit and then headed to spend a day with my Nana. Such a great week. Oh, yes B wore the same cloths for 3 days, the only downside of the whole week :-)


Saturday, August 25, 2012

CF Clinic Update

Last Tuesday was CF Clinic day for me. The verdict was both favorable and unfavorable.

However, before I go into all the details I just want to publicly announce (again!) how amazing my care team is. I could not be in such great health without them. They are some of my biggest supporters and they always tell me the truth; good, bad or indifferent. They have helped me navigate my insurance company when I was single, fabulous and broke. They have gently guided me thru some of the hardest years yet in my life. They have been a source of support for B, to help him understand the complexities of this disease and to offer words of wisdom when he most needed them. The folks who will take their places upon their retirement will have some very large shoes to fill. Just saying!

The unfavorable:

Let's just get it over with it. I have lost weight. Even with the dang feeding tube. Enough weight to raise a few eyebrows. I hate scales. I hate how so many live their lives as slaves to the number and how so many wrap their self-worth up in what the meter reads, so we don't have one in our home. Until Saturday. Ugh! However, I knew I had dropped a pound or two just by the way my clothing was fitting lately but not nearly 10 lbs. That is a lot for me. The worst part is putting those pounds back on is an upward hill to climb. Yes, I love food. But I hate doing anything that feels like a job and consuming 3500 calories daily becomes a job or worse a chore. 3500 a day will only help me maintain, therefore, I need to find ways to throw in a few more calories to recooperate the lost weight. I suppose I could simply just do the feeding tube more frequently or all day for that matter, but the goal is either use it only to supplement what I eat or to allow myself enough time to "bulk up" thru the feedings and be able to sustain a healthy weight by eating alone and remove the g-tube, or toobie (a cute little wee-one used this nickname). Well, I don't think either of those options will be occurring anytime soon. Instead, I will be adding more supplements to my real food and increasing the calorie intake (nearly 2000 calories from 1500) per feeding tube cycle. This also means adjustments to my insulin and digestive enzymes because of the increase. Fun, fun!!

The favorable:

PFT's were again astoundingly awesome. Awesome for me that is. FEV1 was 79 (normal: 80-120). There are other numbers that are looked at but I'll save you some time  and give the synopsis; my lungs are doing well. They are actually improving, at least from what the numbers tell us. After the Pulmonologist gave me my print out of my results I had a few folks come in and ask me what my "secret" was and my only explanation is the running and being complaint with treatments. Running requires usage of the lungs and therefore they are worked really hard while running. I have the Vest to help on the days I don't run but I am telling you its the running. I can feel the difference. I move more mucus during and after running then by doing the Vest. The Vest moves some mucus, but those pesky plugs way down in the lung come up more frequently with running. This gives me the ability to take deeper and deeper breaths and the medication from the nebulizer treatments can then get deeper and deeper to help prevent damage and maybe even allow a small window for healing and/or rebuilding of healthy tissue. I don't know but I know running is working. It took nearly a year of running to see any difference in my PFT's. So, CFer's don't give up, it takes some time.

I'll leave you with a video of the actual PFT session that I scored my 79 on.


Tuesday, August 14, 2012

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.


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.


Tuesday, August 7, 2012

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.


Saturday, July 21, 2012

Grab Bag

This summer is flying by. I am in complete and utter disbelief that it's nearly August. Summer is ALWAYS a busy season for us. So much fun stuff to take advantage of before the rains dampen the soil and our will-power to be outside very long.

We have two dogs (beagles; who do not cry all-day) and I love that I can take them for longer walks. Walking helps me clear my head. Running not so much because I have to remain focused. But walking thru the neighborhood or picking a Pac Northwest trail is super relaxing. The dogs help keep me motivated, if the truth be known. I start to feel bad that their inside so much, so I force myself, even when I feel crummy, to take them outside for a walk. Plus they love me a little bit more because of it.

B is working night and day it seems. We are looking forward to when this particular project is completed so that he can take a few days of R&R. We are planning our very first backpacking trip and I couldn't be more excited about it.

We haven't done any over-night hiking or camping since before I got my feeding tube. We are way past due for an adventure. A few years ago we purchased a full-fledge hiking pack for me, which has been collecting dust. Today, we took it out and started day dreaming of all the cool camping/packing items along with their estimated weight for me to carry lug thru the Deschutes National Forest. I am simply beside myself with excitement so much so that I wore it around, like I used to wear my new school clothes, for nearly 2 hours. My excuse for looking like a fool was that it's better to test it here at home, then in the middle of the woods!!

I am a list maker and this backpacking trip has me making a list at least a mile long if not longer. The one thing B said I forgot was my nebulizer meds, I am working extremely hard with compliance. We both quickly realized that in order to do the nebulizer meds and remain complaint I would need to bring my nebulizer which requires plugging into a outlet for power. UGG!! B, said he was very nervous about us traipsing thru the woods with only half my meds. So, I quickly got on the World Wide Web and found this awesome battery operated nebulizer machine. 

It's all tiny and cute and perfect. Living in today's world is stinky amazing. I can go camping and do my treatments. This little sucker arrives at the end of the week and you best beat your bottom dollar I'll testing it out.

For my brithday my mother surprised me with a new sewing machine. This baby is way out of my league. It is intimidating. I sat down a few weeks ago and started another pillow case dress and quickly found out just how intricate this little do-hicky is. The dang thing can even embroider letters. I learned the slow-sew-by-hand-method of embroidering for which I still do from time to time, but this sew it in zero-point-two-seconds thing is awesome. Now I really need to get my self registered for some sewing classes at the local fabric store down the road, because as much as I am in awe of this new piece of fun I am terrified of it, in fact it took me almost 2 hours to figure out how to use the back-stitch button!!

I don't have a single clue as to what got into me today. I started the morning out with a cup of coffee and thought I would start picking up the office. Our desk gets cluttered with mail that I hate avoid opening. It started with just clearing the desk, then work its way into cleaning up the closet which lead to making piles of: keep, give away, throw away. By the time I realized what my Saturday turned into I had gone thru 3 rooms. Leaving 2 trash bags to throw out, 3 boxes to give away and probably too much stuff kept. I was thinking about driving down to the local donation center but remember that some friends are having garage sales this summer to raise moola for their second adoption. They also have a site to buy some cute stuff. Check it out: The Hall-Closet or you can buy coffee and the proceeds help bring their child closer to a family: Coffee to Bring Little Bird Home

"When life gives you a hundred reasons to cry, show life that you have a thousand reasons to smile" - Unknown


Friday, July 20, 2012

Courage: Needing More of It


to be me (unmuted or muted)
to love freely
to graciously ask for help
to be open minded
to walk in outward faith
to seek my dreams
to change my course, as I deem fit
to not let the nay-sayers have power
to open my Bible and be fullfilled
to forgive those who have hurt me
to see each day, each new experience, each encounter as chalked full of pleasantries

This courage thing is something I see dripping from others, or maybe it's an illusion I paste on them. Maybe each of us exudes courage in some areas of life but not all. Maybe having CF has allowed me the privelege of understanding where I am not courageous, where I am most vulnerable. Or maybe having CF has clouded my sights and in that fog I see being vulnerable as a state of not being courageous.

Sometimes, for a split nano-second, the burden is too heavy. Other times, it seems so burdenless, so easy, so fluid, so natural. But those nano-seconds, phew, it's for those seconds I seek courage.

~Courage doesn't always roar. Sometimes courage is a quiet voice at the end of the day saying, 'I will try again tomorrow.'


Wednesday, July 11, 2012

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:

Sunday, July 8, 2012

Pain into Purpose

The entire purpose behind this blog is to turn pain into purpose. To be inspired by pain. Any pain. Emotional or physical pain. While this sounds easy enough it actually has proven to be some what of a difficult thing to accomplish.

You see, I am a person who is incredibly sensitive. I become emotional very easily. I am ridiculously loyal and have been told that I wear my heart on my sleeve, which leaves it very exposed.  I am not one of those eternally optimistic individuals. I have to work at seeing the glass half full most of the time. This process of turning pain into purpose is something I have to work at, it doesn't come easily or naturally for me.

I could sit and be angry with God or the world. I could feel sorry for myself. I could let my disease control me. But I don't want to. I strive not to. I really wish I was eternally optimistic. I need to find inspiration within the pain.

I can tell you one thing; my faith in Christ has allowed me to see the purpose. My purpose has always been right in front of my nose but it is Christ who has opened my eyes to see it. After years of struggling with finding a purpose I am beginning to see my purpose.

I was beautifully made to be sensitive. Sensitive to the pain of others and myself so that I might be moved sooth the pain. To be inspired to alleviate, understand or transform pain. Much of my personal pain I have pushed into the deep dark depths of my soul. Only of late am I working to dredge it up, pay attention to it, give it a voice so that it can be transformed into something beautiful.

Something to make the world a better place. Something to be proud about. Something others can love. Something others see as inspiring. To give hope to those whose pain is ugly and buried deep; that it might be made into something much more.


Thursday, June 28, 2012

30 Year Reflections: Part I


You know the old saying "don't wish time away because it will get away from you" well there is a reason for some sayings. There is truth to it. I simply can't believe I am standing on 30's door step.

It feels like just a short few years ago I was eagerly anticipating starting Junior High (middle school). I remember all the friends I made in elementray and how we or most of us were transfering to the same junior high. I was starting to get a bit boy crazy, in fact I had developed a crush on a certain someone who held my hand at our end of the year 5th grade party. I remember some fantastic games of wall-ball, tether-ball, four square and all the great tricks I had learned on the monkey bars.

Ah, the simplicity of those years.

I also remember another story. A story of many missed school days. A plot that included many many days/nights in a hospital bed, wishing I could be outside playing with my friends. A story that includes children being mean, making fun of me and down-right harrassing me all because I had CF. A disease they didn't grasp and a disease that their parents didn't want to take the time to understand thus influencing their children's mean spirited ignorance. But I was 10. I was a mere child whose feeling where deeply hurt because I couldn't understand the hatred, the meanness, the fear they held.

Ah, the simple-complexity of those years.

Time marked on. Much of the time without me knowing. One thing that I can say for myself is that time is a great healer. Many of those children who were mean, started to learn (though school and their parents) that CF wasn't scary. Wasn't something they needed to fear. Some became my friends.

My health also started to make a small but miraculous changes for the better. The medical advancements were starting to really take a running start. Many drugs were introduced that dramatically changed the quality of life for so many. I was begining to participate in school sports. I was able to do so much more than I ever had before. The trips to the hospital became less frequent.

While I was becoming more of a teenage and leaving behind more and more of my child-like behaviors, some truths remained etched on my soul.

Early death. succumbing to an terminal illness.

While I knew God, I didn't believe Him or trust Him. Not yet anyways. I also didn't believe that the new drugs that were currently making me feel like a rock star would last or have any bearing on my longevity.

I was a difficult person a lot of the time. But a few folks never left me. They never gave up on me. Even when I began to sabotage the relationships they pushed forward, they carried the strength for me, they saw past the rough exterior.

If I knew then what I know today, I would not have let time just march on by.


Saturday, June 23, 2012

Am I An Expert?!

Am I an expert? Nope. Not even in the field of CF or diabetes or arthritis or patient advocacy or anything for that matter. I do have more knowledge than some on these and other various topics. Why? Because I walk in the trenches of the disease and areas surrounding the disease.

Every. Single. Day.

Just like someone with straight hair understands the difficulty of attempting to curl it. Does this mean they understand every core aspect of everyone who has straight hair? Nope. But I am sure they have an opinion on what hair products seem to work better than other, why? from experience.

So, dear nay-sayers, while I am not an expert (nor have I ever claimed to be) I do have an opinion whose foundation is fairly strong because of my experience because my reality is CF, is diabetes, is arthritis, is patient advocacy 24/7 and all things that intermingle between it all.

It is hurtful when those very close to you judge how your handling your disease(s). When they assume and treat you as though you are ignorant in the topics surrounding your disease(s) only to use their perceived assumptions against you. To call you names, to run your entire existence in the mud, to make an already difficult life (at times) even more difficult. We do the best we can with the information given to us. Sometimes we are wrong. Sometimes we mess up. But please don't think we are ignorant or unknowing because dear one we spend thousands and thousands to get expert advise. We are treated by some of the most brilliant people in the world.

We would be in a better a place if you could support us. Help us. Encourage us. Promote healthy two-sided conversations. Until that day comes all I can do is forgive your nasty words. Rise above to a better place and hope for a better encounter next time.


Thursday, June 21, 2012

Thankful Thursday: Cooking with Love

I am so thankful that I was able to learn the basics of cooking from a wonderfully loving individual; Nana. She alone shall be accredited to teaching me many lessons on preparing food. Her taste in food is   heavy southern comfort meals that I loved to eat growing up. I still crave those comfort meals and still prepare them every once in awhile. But more importantly what she transferred to me was a love of preparing wholesome meals for my loved ones.

I believe this is the most magical ingredient of all. Adding love to any dish will surely be a hit. Since B and I got married I have enjoyed cooking for him. I delight in seeing his face after a long arduous day at work as he walks in the door to smell another one of my creations. I secretly think he dreams about what dinner will be each night. I love watching him inhale the plate of food. I love that I am in some small way not only satisfying his hunger but helping be the best him he can be by giving a healthy meal. We, of course, have our guilty pleasures that we indulge in now and then.

I have really been pushing the boundaries of my cooking abilities. I am venturing into unknown territories. This brings some frustration when the dish doesn't turn out like I think it should or how the picture of the recipe looks, but its fun.

Surprisingly to most, B loves to cook. He loves food. He loves trying new things and he's awesome at giving feedback. A lot of times we pick out new recipes together and work together on Sunday's to prepare the meal. Such a great way to spend quality time together.

Cooking with love is something I am beyond grateful that Nana passed down to me.

Off to cook dinner.


Monday, June 18, 2012

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?


Thursday, June 14, 2012

Thankful Thursday: Power of Choice

The past few days and weeks I have been on the edge of great emotions. I am not exactly sure as to why, but I do know there are a handful of contributing factors. The weather has been up and down, my joints have been really hurting, the hubby is working long hours, my 30th birthday is fast approaching and on and on.....

Today, I was standing in my closet choosing what to wear. My first thought was something drab that would cover me up, keep me comfy, keep all my self-conceived flaws out of view and plainly because I didn't feel particularly spunky. But, as I started to pull out a shirt then pants my mind wondered to that place of choosing a bad day or deliberately attempting to choose a good day. Your probably thinking I am crazy that my mind would go thru all that just over picking out what to wear. But for me, my cloths are as creative as I get. For me, they are an expression of who I am, how I am feeling and what I plan to accomplish that day. The labels are not important to me but the "look" and "feel" are.

After looking at what I had pulled out I made a choice to pull out a different less draby shirt. What I pulled out was a bright green shirt with black stripes. It all began with choice number one.

As the day went along I found myself at crossroads of choosing positive options or negative. All along the way I found that I veered towards the negative and had to deliberately opt for the positive. Decision by decision I am now wrapping up my day. The day was positive. While not easy nor was making it a positive day easy; nonetheless is was positive.

As I sit here writing this post of what I am thankful for I am realizing (not for the first time, unfortunately) that I have the power to choose. We all have the power to choose positive energy. Does this mean it will be easy, heck no but it does mean you'll be in a slightly better place mentally and emotionally than if you made the opposite decision.

Today, I am thankful for the power of choice. The power to stop at each decision each crossroad and choose which directional arrow I am going to follow. The power to allow my circumstances; whether controllable or not, to edify me or consume me.


Tuesday, June 12, 2012

Creaky Joints and Wraps

The past months weather here in the Pacific Northwest has been anything but desirable, truly. We had a couple of days that the mercury hit 80+ degrees but other than that it has been cold, windy and rainy. This   fluctuation in temperature and weather irritates my joints.

I was given the diagnoses of rheumatoid arthritis a few years back after a ridiculously excruciating experience with gout. Apparently, CF physicians are seeing this more and more as patients live longer. The exact reason is a bit unknown given that CF affects every system in the body. For me, the pain has been debilitating at times or the pain so great that I need heavy duty drugs to bring relief which has a lovely side affect of extreme drowsiness. So, either way I am pretty worthless when the pain rears its ugly head.

The one thing that does help depending on the level of pain is heat. I used to take blistering hot baths or showers to help bring relief. But as of late I have found a wonderful little thing by Earth Therapeutics that you heat in the microwave and wrap around whatever body part needs it most. I usually use 3 of these wraps at a time.

Relaxing Microwaveable Comfort Wrap - Green

With the weather fluctuations the wraps have been a staple for being able to fall asleep. Night time is worst time to deal with pain. If I am up and about its much easier to "put my pain in some other place" and attempt to carry on. But at night, when its quite and your mind sticks to one thought or thing is by far the most miserable time to experience pain. Plus it sort of feels lonely, even with the hubby snoring right next to me.

Any ideas on how to help relief the pain during the day, say, when I'm not at home but running errands or attending appointments?


Thursday, May 31, 2012

Thankful Thursday: Ice Cream and Long Days

The past few weeks have had me spinning; going to and from with a full social calendar. This time of year I am spinning my wheels because the hubs begins his very long work days. As summer is their busiest season, the time of year that generates enough profits to get the small family owned business thru the winter when all things landscape related seem to halt. He works 6am to 7pm. Leaving no time to help out around the house; nor would I ask. The long days keep me motivated to get things done. My take on it is this, if he is busting his hump (literally, physically he looses approx. 10-15lbs every summer) then I can "lady-up" and make sure this household runs smoothly. I would be mortified if he came home after such long grueling hours of braving the weather conditions, managing people, attempting to meet strict deadlines, and at times literally picking up a shovel to move earth all day to find our home unorganized, disheveled and me being lazy not carrying my weight when he needs it most.

But the long days alone make me miss him. Anyone who is married will understand that some alone time is wonderful, refreshing and invigorating but too much alone causes you to miss them, to want to shower each other with love and words of encourage to make it thru the next long day, thus appreciating one another. I have been at this heightened routine for almost 3 weeks and I find myself watching the clock with eager anticipation between 7-7:30pm. I am eager to see him. To hear his voice. To attend to him and let him put his feet up for 30 minutes while he eats dinner. To lay in bed at 8pm while I run my feeding tube snuggled up to him and watch something via our little laptop.

Distance or time makes the heart grow founder. This I truly believe; if the love is genuine.

Since I am staying on my feet and keeping up on all my "chores" and duties around the house along with taking on his duties I am exhausted. Tonight's dinner for me was a HUGE bowl of ice cream. And I am forever grateful for each smooth, cool, sugary bit. The sugar high might push me to get his lunch ready for  the next day tonight rather than at 5am tomorrow morning.

I am thankful for the small things, for all the small things make up how great my life is.


Saturday, May 26, 2012

A Week in Reverse; Not Saying 'No' Worked

This past week has been an exciting whirlwind. One of my biggest weaknesses is not knowing when to say "no." Generally, I get by but sometimes I over-book myself causing much unneeded stress. This week I did over-book but by Friday evening I was invigorated by all I had done. Yes, I was stressed just thinking about each day's to-do's, errands, meet & greets, volunteer commitments, etc...

I have been asked; why does having so much "good" stuff to do stress me out. Here is my answer. Each day brings different issues when dealing with a chronic illness. I never know if I'll have tummy issues and need to be close to a bathroom. I never know if my joints will ache causing me to move slowly or just plain out leaving me immobile. I never know if I'll wake up with chest pains, shortness of breath or some other aliment.

So, when making plans I always become nervous about whether or not I'll be able to keep my commitments. I have lost friends because they simply couldn't understand that as much as I want to do something, there are times when I can't even though I have committed.

Last Saturday I participated in the Oregon Cystic Fibrosis Foundation's Great Strides walk AND then I raced home to get ready to volunteer at the annual Ethiopia Orphan Relief's Lights of Hope auction. Both events people where depending on me. I couldn't cancel. These events benefited people/children who need it. It's events like this that I make up my mind to suck it up and power thru whatever pain/issue I maybe be experiencing. Each event was amazing. Meeting new people, hugging and catching up with old friends and making a difference in the lives of those who need and deserve it. This is why I power thru.

Come Sunday morning my body hurt. I had done too much. But my commitments were not over with. I thought long and hard about canceling Sunday's engagement. I am so glad I didn't. The hubs and I needed a calm date together and we got it free as a gift. How could I pass spending time with him?!

The rest of the week came and went. Each day having an errand to do, appointment of some sort to attend and just good old life happenings. I had a lunch date with a friend whom I haven't seen in months. Chatted with a friend who lives a few hours away after weeks of playing phone tag.

ALL good things. This morning I feel full. I feel sleepy but invigorated. I feel like not saying "no" worked this week. Please don't be offended if next week I use "no" a time or two.

Thanks for letting me have a small part in something. Thanks for excusing me when I simply can't.


Thursday, May 17, 2012

Thankful Thursday: Yummy High Fat Treats

It's Thankful Thursday! I don't know if I can top this weeks good news. Although I do have something that I am thankful for.....Nuttella

This tasty spread is just the thing I like when I can't sleep because I feel hungry. It might sound weird that I feel hungry at night, even with a feeding tube, but I does happen. I am thankful that I can reach in the cupboard to pull out the Nuttella and lather it on almost anything. Here are a few things I enjoy it on:

  • toasted waffles
  • saltines
  • pretzels
  • fresh fruit
  • bread
  • toast
  • plan, scooped with spoon
I love it so much that I buy it from Costco. This stuff is magical. I bake with it and have made some super duper yummy things. It's great if you need something that is high in calories yet good for you.


Wednesday, May 16, 2012

"Nearly Normal", ummm....what?

Me: "Say what?"

CF Doctor: "Your lung function is stable, and nearly normal."

Me: What?!

CF Doctor: "whatever you've been doing, even with the ebbs and flows of compliance, has been working for you."

This is a snippet of my conversation at yesterday's CF Clinic appointment after doing my PFT's. I am blown away. In 40 days I will be 30 years old with CF and quite possibly the healthiest I have ever been. My stats on 5/15/12:

Blood Pressure: 114/70
Pulse: 70
Weight: 123 lbs
BMI: 20.87 (I have worked SO hard for this!! Yay, g-tube)
FEV1: 74% (80-100+ is considered normal; I ranked 74% of woman my age, height and whom are healthy)

I can tell you this, I will not stop at "nearly normal" I will continue to push the boundaries of my health. I will not rest until I am "normal" until CF is no longer. Beyond thrilled is an understatement.

Me, nearly normal!!


Sunday, May 13, 2012

Mother's Day: Bitter Sweet

Mother's day is a day filled with mixed emotions.

Love and appreciation for my mother, who sacrificed so much for my brother and I. For all the sleeplessness nights she spend by my hospital bed, hoping, wishing and praying to be able to walk out the hospital lobby with me in-tow. For all times she would find away to afford to take us to my favorite restaurant, Red Lobster. For all the times she carted us from sports practice, to/from school, to a friends house for a sleep-over, for letting my best friend (still to this day!) stay at our house whenever. For the patience to deal with me as a rebellious teenager. For all the small some what unnoticeable things she did for us I can now see where huge sacrifices or nearly required an act of God to pull off.

I think of my best friend who lost her mother a few years back and how difficult and lonely today must be for her. How she must be longing to hug and kiss her mother. To tell her mother how much she appreciated all the things she did for her. I am sure my friend is wondering what advice her mother would give her to help her with this stage of her life. I am sure her heart aches today.

As my 30th birthday fast approaches and 6  years of marriage is within sight, I feel as though there is a hole in my heart. Someone is missing. Our home is too quiet. There are no children's books haphazardly laying about. There are no little shoes mixed in with big shoes by the back door. There are no signs of this someone. My heart aches for them. Will I ever meet them in this lifetime. Will Mother's day ever be applicable to me?

So, bitter sweet is Mother's day.


Thursday, May 10, 2012

Thankful Thursday: May Flowers

Finding one thing to be thankful for is actually sort of difficult. Life is too full and abundant to be thankful for just one thing. However, today, or this entire week rather, my eyes have been drawn to all the gorgeous flowers that are beginning to bloom. As I drive into town I pass a man rototilling his little patch of dirt for what appears to be the start of a vegetable garden, while his wife is preparing baskets to hang from their porch. I just love the idea of taking something ordinary, a patch of dirt, and edifying it with flowers or plants. It reminds of the old mentor of life that with death (winter) comes life (spring).

Many of you know that my hubby works in the Landscape Design arena and I used to wonder how in the world the hubs enjoyed what he does for a living but this time each year I am reminded. He, just like the couple above, take a plain piece of land and give it life. He loves it. He loves seeing the transformation. He loves working outside with his hands.

I love that his profession affords us all sorts of "leftovers", which generally end up in one of my flower pots. The first "leftover" this season is this beautiful orange Lilly. She came to us with no blooms and has just recently shown herself.

Today, I am thankful for all the stunning May flowers that are blooming all over the place. Fills my day with color and rejuvenates my mood.


Tuesday, May 8, 2012

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


Friday, May 4, 2012

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.


Thursday, May 3, 2012

Thankful Thursday: IV drugs

After today's events I am so thankful for IV drugs. The kind of drugs that can make the horrid feeling of wanting/needing to vomit none stop simply melt away and a headache that was making every attempt to split my head in half, so subside within hours.

Since around Sunday I have had a nearly constant headache. I didn't put much thought into it because living in PacNW during this time of year many experience allergies and I honestly thought that I must have a slight touch of it. As Monday came and went the headache persisted and I continue to attribute it to allergies or stress.

However, this morning I awoke feeling nauseated and the headache had gotten almost intolerable. I pushed on even after vomiting and went on with my daily to-do's. Around noon-ish my vision began to blur causing me to begin to freak out. This is highly unusual.

Being that almost everything that ales me is related to CF, I called my CF team. I was instructed to report immediately. Once in the clinic my doctor diagnosed it as a migraine and probable dehydration from the vomiting. So, not in fact CF related. Yay! Just relatively normal non-CF stuff, for once.

He sent me over to nurse treatment in order to start IV's to help alleviate my nausea, migraine and dehydration. So, thankful for these amazingly wonderful drugs. The actual IV process not so much but it's a walk in the park to the thousands of other procedures I've endured.

Let's hope these magical drugs do the trick and ward off migraines forever. Thankful. Thankful.


Wednesday, May 2, 2012

Sunday Goodness

I just love Sunday's. The hubs and I generally spend the day together doing errands for the upcoming week or doing something fun, like golfing. But this past Sunday we decided to go to the movies with our movie tickets that we got as a gift and to make dinner together. The hubs is actually a really good cook. He does things WAY differently than I do in the kitchen and I am learning patience with that process but amongst the chaos he is able to bring amazing dishes to the table.

Homemade Mac N' Cheese with Habenero Sausage in the works:

I failed to take pictures of the finished product but I can tell you it was goooood!! I even ate leftovers on Monday.

Tuesday, May 1, 2012

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:


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.

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