Brushing Off the Cobwebs

This little place has a few cobwebs, geez! Funny how things get left behind as others start to nudge their way to the forefront. I do love this little place where my thoughts, feelings and heart can be laid out. Yet, there is so much in my life that I love and want to give my 100% towards, I just can't give 100% to everything all the time.

That being said, there are a few things that I must always devote my all to. My health, my marriage, and my family. My health must come before anything, because without it I can't function. I MUST keep up on my treatments, running and doctor visits. In addition my marriage is so very important to me. I work hard everyday to ensure that my spouse feels loved, secure, appreciated and wanted.

So many good things are in the works and I look forward to sharing all those amazing things with you all. God sure does work all things for our (my) good. It doesn't always feel that way, especially when we really really want something to go our way, on our timeline and with our desired outcome. However, that's not what is always best.

I can share with you that I will be doing another half marathon on April 12th. I feel very confident that I'll be healthy enough to participate. I've been training since the first of the year and finished the longest run in my training schedule this last Saturday (March 28th). I'm excited to get another half under my belt. I can't express just how much running has changed me. It helps me feel confident in areas of my life where I don't feel confident, it helps me take an active role in keeping my lungs clear of the mucus junk, gives me a healthy outlet, and soooo sooo much more.

My ever-so-sweet sister-in-law, Heather, has taken on the challenge for yet another year to head the Kari Doodlin' Great Strides Team. I'm a firm believer that support comes in many forms. She has chosen to support the funding a cure and she visits me when I'm in jail (hospital) with my ever do darling niece and nephew. I feel so grateful that she is the mother to my niece, nephew and wife to my brother. I also thankful we get along and feel enough love for each other to show our support. Thank you, Heather! I love you.

If you're interested in helping her help me you can make a tax-deductible donation here:
Team Kari Doodlin' Donation Page

~Doodlin'

35-miles all for CF Cycle for Life

Riding in the truck on the way home the reality of what I accomplished brought me to tears. At 31 years old, approximately 6 years from the average life expectancy I crossed the finished line of a 35-mile bike ride to benefit and fund more life saving advancements in CF. I did it!! No one pulled me, carried me or helped me a-crossed (with the exception of moral support and words of encouragement) the finish but me, myself and my pure determination to not let CF win.

We cycled around Henry Hagg Lake and thru two towns; Forest Grove and Gaston. The company B works for Cascadian Landscapers, Inc supported the team and my ride. I was the ONLY rider with CF and dubbed the Ride Ambassador.

Team Cascadian Landscapers, Inc!

The weather was perfect. Not too hot not too cold. We shared laughs along way, struggled up a few hills as a group and ended the day by eating while having a glass of wine on the lawn, that is after I laid like a dead person to regroup myself. Good greif!

The ride itself was for the most part easier then the previous time I rode in Cycle for Life. There were a few good size hills, which were mostly around the lake and the rest were rolling hills. During the first 18 miles had a few what-the-heck-am-I-doing thoughts but felt good overall. However, the last 10-miles or so were excruciatingly long. I thought we would NEVER get to the finish.

Since we rode with my hubby's side of the family (sister, mother and father in-laws) they all would "check in" to see how I was holding up. Towards the end, last 2 miles or so, we could physically see the winery where the finish line was and I seriously felt like giving up. I was tired, my legs were rubbery, I was having a very difficult time keeping my breathing rhythmic and I was just plan done. Those last two miles felt like eternity. The worst part was the finish was just at the top of a hill. A huge hill.

But we did. I did. I'm so proud of us ALL. I'm so thankful for those in my life who support me and push me to reach new heights and not let this disease dictate what I can and can't do. I rode for all those who are struggling, those who have lost the battle and for those who gaining new strength every day.

What a ride!

`Doodlin'

Community

I've been doing alot of thinking about community and what it really means to me and how I'm impacted by having a community. Being apart of a community is a basic human longing, I mean just look at the explosion of internet communities. We all long to be apart of something, to have support systems, to build relationships upon common interests and to simply belong. Often times it's where we find our passion for life and pursue it. It's where we learn new things and teach new ideas or point of views. It's where we find hope for the new day.

I've learned that a community doesn't have to be a anything elaborate, it could just be you and a friend. I, like most, belong to a few communities; friends, family, church, book club, Cystic Fibrosis community and a few other super small ones. I love having so many. Each community allows me to bond with a wide variety of folks that I probably wouldn't otherwise have the opportunity to do so.

Being sick a lot means that sometimes I can't function actively within many of my communities. I miss out. I miss them. It's also humbling to know that these communities reach out. If I need anything my community is ready and eager to help. My biggest problem is my ego. I have a hard time admitting that I need help or could use the assistance. But they just know and come armed with what they can give. Some bring a smile, some bring a book, some bring food, some just come and I couldn't feel more blessed.

This go around of IV's my fabulous book club has offered to help with meals. I am here to tell you, agreeing to this assistance, was like jumping from the highest rock into the waters below. I feared it. I was anxious about it. Now that it has commenced I am soooo thankful for it. It's been a huge help to my hubby and I. I just love catching up those who come to drop of a meal, it gives me relief knowing one task is taken care of.

I think when we open ourselves up to our community or just join one we quickly find how greatly enriched our lifes become and so are theirs. At this time in my life I thrive on building these relationships and look forward to building my communities. Making them strong and impactful all while enjoying our common thread.

~Doodlin'

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.

~Doodlin'

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.

~Doodlin'

Thankful Thursday

Today, I see so much to be thankful. So much so that its hard to pin point just one thing to focus on. However, today its not about me or the blessings in my life but about two children many borders away.

My dear friend and her husband will finally be able pour their love onto these children and let them know they are not alone, they have a mama and daddy who are desparate for them. These children will begin the journey of understanding what its like to have a family, to feel the love that comes from a family, to know that God has a plan for them and to have the opportunity to have life outside of institiutionalization.

Their story can be read at Treasures Over the Rainbow.

I am thankful that God hears our prayers. I am thankful that I have been a small part of their journey, for it has changed me, these children and countless others just like them have changed me into a better human. I can't wait to see how these children blossom under the unconditional love of a family.

~Doodlin'

Ah..... 2011

I am one of those make a list of the wonderful things and make a new list of all the wonderful things to accomplish on the 31st of each year. I know... I know.

This year, 2011, however has been a difficult one on levels that I NEVER thought I would face. Most of the hardship has not been directly CF related but side affects of CF. You know little things like, having to face a short sale or foreclosure as medical bills were pilling up, re-thinking my career and beginning the writing of a book, receiving a letter from Social Security that I owe $35,000.00 in overpayment of benefits, and much more personal family stuff.

All of this taught me so much. It has made me realize how strong my marriage is, how strong my faith and how strong I am while simultaneously teaching me how much more it can and will grow.

I want to sincerely show my gratude for all who have followed my journey over the past year. All who have shared in my sorrow, joy and life-changing challenges. I have been humbled by your support.

God has brought me to 2012 therefore He will bring me through it, no matter what obstacles arise!

Happy New Year!

~Doodlin'

A Week of Giving Thanks:Day One

Something I don't write much about is religion, for many reasons, but I am Christian and thus the Holiday season has a very different meaning and purpose than simply to have a holiday for my family and I. This week I wanted to begin reflecting on the amazing things and/or people for which I am most thankful and grateful for. I couldn't start without showing my gratitude and love to God.

God has brought so many wonderful people into my life. God has protected my very life when I should never have been spared. God brought me my amazing husband to walk this journey with. God has allowed me the pleasure of walking side by side with so many great women (you know who you are), women who have taught me many lessons. God has given me wisdom beyong my years. God has shown me great love and showed me how to give love. God made man with the ability to develop ambition and knowledge which has brought about life-saving medications and physicians who work tirelessly so that I (and millions) can live another day. This is not by chance but by the grace of God. God has his hand in all things good.

I am thankful that I know God and that I have a personal relationship with Him.

~Doodlin'

Encouragement Anyone?

With my limited experience of running long distance, okay not so long, but I am making great strides in upping my mileage beyond a 5K, I am thinking about how amazing this man must feel. How grateful he must be to have been able to accomplish running the NYC Marathon with CF. This brought me to tears, it gives me hope of what the future can hold. It shows me anything is possible. It encourages me to carry on another day.

Watch this short video.*Warning* you might feel inspired afterwards!!

NYC Marathon Runner w/ CF

Thank you for the encouragement today. Thank you for running for all of us and giving us hope for tomorrow.

~Doodlin'

What's with the name?

It has been brought to my attention that many of you don't know why I sign off here with Doodlin'.  Today I unravel the mystery.....

As a little girl who came from a family who worked hard but had little money I spent lots of time of my Nana, my mom's mother, as her babysitting service was free of charge. My younger brother and I spent countless days and nights with Nana and Papa as children. They had a small piece of property that housed dogs, chickens, pigs, and horses. My brother and I loved to play outside in the pasture, chasing whatever we could. We made all sorts of fun things on the property with our tricycles and wagons. I even convinced my brother to touch the electric fence, I made him believe it was fun....mwhahahaha :)

Being that we spent so much time with them meant that they had lots of time to come up with ridiculous nicknames. The one that stuck on me was one that is still used between Nana and myself. You see, when staying with Nana and Papa, Nana would sing (yes, sing) a morning tune upon our awakening that some how included our name. For me it went a little something like....

Kari Doodlin' Dollarhyde woke up one morning feeling fine............

After that first line she would change the rest of the chorus to include what might be happening that morning or what had happened the evening before. The best part of the song was that we got to sit on her lap while she rocked us. Nana is not a stick lady, Nana has meat on her bones and I loved that. I love that I could curl up in her lap and be surrounded by her. I felt safe there. I still feel safe there even at 29 yrs. I have a time or two in my adult years needed her lap to escape the world's and CF's cruelty.

There is truly no love like a grandmother's love. Thanks for the many hours of rocking Nana. I love you!

~Doodlin'

Patient to caregiver and back again

As I grow older so do those around me and I am finding myself in quit a pickle. I have never been a caregiver. I am not a mother, I have never had to oversee care for a chronically ill parent or grandparent. I have always been the patient or the one receiving the care. My pickle is that I want to be the best caregiver I can be when and if the time arises yet I have little to no experience.

I have had some incredible caregivers. I am still lucky enough to have my mother and grandmother as two of the best caregivers in the world, if I don't say so myself! I have also had many outstanding nurses and doctors who have spend countless hours assisting.

From my perspective being a caregiver is at times is harder than being a patient. Caregivers are helpless most of the time, while the patient (if able) can make decisions about their health care to treat or ease the side affects of the illness. Caregivers are so crucial to the over-all well being of a patient, simply because of the non-medical support they provide.

In my case, my caregivers have all help in different ways, each caregiver has a different set of strengths and skills. For example, my Nana (grandmother) set of skills and strengths was to comfort. She would always come visit with yummy food that warms the insides and with a tender hug, kiss and even a lovely little song. Yes, a song! Nana would stay by my side even if I was sleeping, I can't even begin to verbalize how comforting waking up to a familiar face is in the mist of being ill. While my mom's strength was in directing traffic of sorts. She would make sure that I had what I needed when I needed it. She also dealt with the doctors, getting prescriptions, making sure I took all my medications and making sure things ran as smoothly as possible for me. She too would be there upon my waking  but often times she alot of hats to wear, like parenting my younger brother and ensuring all his needs were being met. Mom's of multiple children with whom one is ill are some of the strongest, bravest, determined and fierce woman out there, no joke.

About 4 years ago my mom was diagnosed with Thyroid cancer. The treatment was to remove the entire Thyroid and any surrounding glands if needed along with some oral medications of sorts. I had in my mind that I would walk every step of the way with her as she navigated the ruff waters. I went to a few doctors appointments and was there when she had the surgery. But I quickly realized that it is really difficult to make the transition from patient to caregiver. I have never had to care for my mom or assist her in making major medical decisions besides going for routine check-ups. I truly felt lost and had no idea how to help her or what to say to comfort her. I also think it was hard for my mom to transition from caregiver to patient. We as humans become so accustom to doing and managing things a certain way which makes change or transition difficult.

I pray I never have to become a caregiver to my mom or Nana or anyone I love but history along with time tells me that they are aging. While there is no way to anticipate the kind of care they will need or want I can begin to attempt to understand what makes a great caregiver and mentally try to become just as great a caregiver to them as they have been for me. I owe them that at the very very least.

I must learn to become a caregiver from the experiences of being a patient.

~Doodlin'

Every Day Heroes...

In life we have people who come into our lives for different reasons and different periods of time. Each person has a purpose in our lives whether to teach us a lesson or to help us thru a difficult time; the reasons are endless. Some people stay for a few days while others stay a lifetime.

I have had the pleasure of having many people come into my life. Some of those people have faded from my life and many are still walking side by side with me thru life. Each and every person has brought something to my life that I would not have had they not been present.

In the journey of meeting, learning, supporting, caring, etc for the different individuals in my life I have learned an incredible lesson. The people who walk side by side with those who have terminal illnesses are the heroes. Many people tell me... "Kari, your such a hero, your such a great resource for the rest of the world...." but the truth is I am not. I don't have a choice. I cannot wake up each day and make the decision to have CF or not to have CF. The people who walk with me do. They wake up each day and get to make the decision to stand by me. Sometimes standing by someone like my self results in grief, heartache, anger, and hatred. These people choose to watch me suffer thru life with CF. They are the heroes! They are the ones who are courageous enough to make that decision and allow their hearts to be open.

I used to think I would never find someone who would be willing to marry me and spend the rest of their life watching me go through what I do. But I did! He is a hero in my book. He picks me up and helps me hold my head when I am weak. He makes me feel beautiful during times of despair. He is a hero.

My dear mother, there are no words to describe her strength. She is a force to reckon with. She never gave up on me. She fought when others had no hope, including myself. She never felt sorry for me, but encouraged me. She loved me thru my darkest of days, she never held a grudge, only determination. She laid by my side when I felt like I was facing my last days on earth, all the while reassuring me. She is a hero! She put all her fears, hurt, anger aside to support me as I fell to pieces. She was the one that picked the pieces up to help put me together ever single time without question. She once wrote "I would go to the ends of the earth for you!"

To all the heroes in my life. THANK YOU! My life would not be as wonderful as it is without all of you. I love you all more than any word can say.


~Doodlin'