Faces of Inspiration

CF has many faces. All have different journey's, different perspectives on CF and life and each have different symptoms from CF. Not every CF journey is devastatingly sad nor hopeful. But....but....some are. A CF journey that I find hopeful and inspirational is the one of a set of twins, Click Here to see their journey.

For me, I need both the hopeful and sad stories to gleam perspective from. For me, CF has given me things in life that I would not have had the opportunity for without it. It has given me insight where my eyes would been closed.

Don't be mistaken, I want need a cure.

So today I want you to see that hope can come from devastation and something beautiful from such ugliness, by reading about The Power of Two (please click the "Click Here" words).

~Doodlin'

A Face to CF

May is National CF Awareness Month.... not sure how I feel about this. I mean it's great that enough "Big" people (government) are aware of CF and the devastation it brings but it also deeply saddens me to think that we need a month because of how prevalent it really is, you know, sort of like National Adoption Month (November) there are so many orphans in the world that we need a month designated to making people aware of such crisis against humanity.

Well, the primary reason for dedicating an entire month is to focus on fundraising. Another sad, reality, money. But a secondary, which should be primary in my mind, is about getting those with CF's stories out to the world in hopes to put a face with CF. You all have seen my face, but take a look at this sweet boy, Conner.

This is why May is National CF Awareness Month. If you feel have the resources I encourage you to donate here or if you don't then please take sometime to educate yourself about CF.

~Doodlin'

A Pillow Soaked with Tears.

I lay hear in bed the clock flashing 2:34 a.m. and my is mind racing. The tears are flowing down my face, along my hair line soaking my pillow. I am alone, B is in Sisters, working. Why the tears?! Cystic Fibrosis.

I have boarded the crazy train, my boarding pass has me seated in 'temporary' and I am not hoping to be upgraded. I want off. I want a refund. I will walk whatever distance. Please God please!

I am afraid. I am lonely. I am starving. I am suffocating. I hate it with every fiber of my being. I hate all it has robbed from me. I hate it for what it will rob me of. I hate that I am crying over it. Hate is NOT a strong enough word.

I want to be free of this g-tube and tubing connecting me to the feeding machine for the next 5 hours of a 10 hour cycle. I want to roll over in bed without having to untangle myself.

I want a cure. Yesterday. Until then my pillow will help dry away my tears.

~Doodlin'

An Amazing Friend

This is shout out to my friend, Gregor. Who is this person you ask? Why haven't I given notice to her/him? Well, you know its one of those too long too complicated to write out in a post things. The short version, however, is that she is amazing.

The friendship began during our awkward pre-pubescent years when it was only 'cool' to hang with a particular group/person. We were unlikely friends by most standards. She was an athletic, smart, clarinet playing weird-o, while I was an outrageously spontaneous rebellious 11-year old who disguised her smarts. We were in the same "home room" and were forced to into a friendship. Our friends were friends...Yuck! As the school year (1991-1992) progressed we sort of grew on each other. I liked her beautifully natural blonde hair, athletic build (which I would later hate her for), easy demeanor, and copy her homework.

The years of Junior High sort of flew by with the normal girl spats. One day hating each other the next vowing to NEVER talk to her again and other happenings like band concerts, school dances, sleep-overs (we practically lived together depending on who's parents let us), soccer games (which Gregor introduced me to) and more girly relationship building activities like note writing, talking about cute boys, etc. She became my life-source thru the school years. I am sure most of you remember or are parenting children thru these difficult years. There are alot of unhappy memories that come with growing up; bulling, name calling, outcasting, etc. Well, folks I was not immune to the harshness of other peers unkind words, thoughts, actions or their uneducated parents.

Ms. Gregor was by my side, for better or worse. Not really sure why, but she was and is. She spend nights and days in the hospital with me, even traveling to OHSU from Bend to be with me. She brought me homework, or just did it for me...shhhh.... She communicated with my teachers to help them better understand why I was out of class. She encouraged me to play soccer, she made me feel beautiful when the medications bloated my face just in time for school pictures (we laugh now at my chimp-munch cheeks), she stood up to my persecutors and slapped them in the face, literally and figuratively.

As the years rolled on, we sort of drifted apart during high school. We of course were still friends, but my rebellious side was in full gear and I ended up dating the boys who were in constant trouble with the law and unfortunately most of them still are to this day. I eventually stopped going to school all to together, I thought school was eating away at the possibility of having real-life experiences and on my short life span I needed to fulfill those experiences and not worry about education, I didn't think I would live long enough to use my educated mind. Until graduation started to creep up on me. I wanted to walk with Gregor, but because I wasn't around in class she had chosen someone else. I was heart-broken. It made me question why I wanted to graduate. Once I made up my mind I worked with a tutor to help me get thru senior year (unearthing my smarts making up a year in just 2 months!). I eventually made up time and was able to walk with my class, I walked behind Gregor, which in my mind was appropriate, she earned the lead.

As we both have grown into adulthood we have remained friends. Thru long distance, marriage, loosing a parent, cancer in a parent,  many other life-changing experiences and my ongoing medical issues, she has chosen to remain in my life. I have to be honest, at times, I can be hard to love. I can be opinionated, argumentative, depressed, difficult, hard-headed, hateful and down right negative. There are times when we go months without speaking or writing but when we connect its as though it was yesterday. We pick where we left off, knowing that life is messy.

She never feels sorry for me (at least doesn't show it) but encourages me to pick-up and continue on. She has been a shoulder of comfort and an ear that listens. She has spoken words of reason when mine were about to board/or had boarded the crazy-train. We have buried parents together; both under the worst of circumstances. We have laughed so hard that we cried. We have protected each other from life's unkindness. We have loved each other thru life's seasons of change. We are friends.

She is amazing. There will never be another.

~Doodlin'

Things are not always what they seem...

If you meet me on the street you most likely would have no idea that I have CF. You may think I have asthma and that I am a bit on the skinny side but never a terminal illness. That's the most difficult part of having CF. For this reason alone most people don't understand what it means to have CF. We can associate cancer with the heart break of losing hair, becoming frail, or the removal of breasts, kidneys, skin, etc. See with CF unless you have a lung transplant, which a high percentage of CF patients have/will need, you don't have anything tangible to associate with CF.

For me CF brings on spouts of coughing so intense that it causes uncontrolled urination and vomiting. The vomiting is less frequent than urination but still neither is better than the other. I am sure most people have had a cold that caused them to cough so much their ribs hurt. Well it's sort of like that but on a daily bases for the entirety of your life. I also struggle with joint pain, the pain is there every single day and only when completely intolerable do I take narcotics to help ease the pain. Just those two aliments can be enough to bring me to tears and hate the realization of a new dawn. Not to mention the complications of having a feeding tube, CF related diabetes, enlarge liver and the freakin' list goes on and on.......

I am a young women who's husband has assisted her with everyday tasks; like assistance to the restroom more times than I can remember.  He, a 26 year old, has been a caretaker to a young (28 year old) woman, not a 80 year old lady who has lived a full life and before him was my mother. They are my Every Day Heroes!

So remember, the person next to you in the grocery line or the driver in the lane across from you might have an outer appearance that resembles nothing of what their struggles are. Things are not always what they seem....be kind to one another. I know when I have a difficult day a nice smile from the person in the grocery line really warms my heart! Try it sometime it might warms your too.

~Doodlin'

A Change

Many people, myself included, go thru life mundanely. We go thru our daily routines at such high speeds that our memories start to become a blur or a smear in our mind. This pace which we know is not sustainable yet we don't know how to slow it down causing frustration.


For me frustration is something I know quite well and to be honest I tend to fall apart under extreme frustration. However, the older I get the more I understand what triggers my frustration; a place of being and/or feeling  helpless. I can't even begin to explain just how much being helpless impacts me. It causes insomnia, emotional breakdowns, depression, exhaustion, acne breakouts and lack of motivation. Now, to be clear, I don't experience these symptoms when I am mildly frustrated, but REALLY REALLY frustrated. The type of frustration where you feel as though you have tried every trick in the bag, every suggestion by others and really just about anything and everything.


Over the past year or so I have experienced this extreme frustration and over the year I had not been able to find relief. I tried talking about it with those who I felt had power to help and I tried changing my view of the situation in hopes to also change my attitude all to no avail. It was just after the first of the new year that it dawned on me, the problem was me! How was that I had not even considered that?! I was the one frustrated. I was the one who needed to change. So change is exactly what I did and have been doing for the past few months.


I have changed my course by evaluating what I want, what I am good at, and what I feel my purpose is. My new path is to pursue a public speaking venture that focuses on patient advocacy. 


~Doodlin'

A Promise

Having a terminal illness typically demands a strict regimen of medications, nutritional needs and a slew of other things. After 28 wonderful years of attempting to maintain this regimen I have to admit that I am not "strict" but rather I have at times been lax about much of it. However, during my CF clinic in October my team (yup a team of physicians) once again reminded me why doing all my medications everyday as prescribed is SO important.... a better prospect at a LONGER HEALTHIER LIFE!

So two weeks ago I made a promise to myself to do just that. So far, I haven't been 100% perfect but I am making a decision every day to attempt perfection. My biggest fault lies with doing my nebulizer treatments. I can swallow pills all day long but sitting still for 20-30 per treatment, which ends up being approximately 1hr twice daily, is simply hard for me, REALLY hard for me.

My motto: "Doing all my medications is not submission to my CF but rather freedom from it"

~Doodlin'