What to say?!

CF is such a funny disease. Ok, not really humorous but fascinating. Its the only disease that affects and attacks every single part of the body. Lungs, pancreas, kidneys, blood sugar, sinuses, heart, reproductive system, vitamin levels, and disfigures the fingers and toes.

You know the saying "when it rains it pours?" That saying is perfect for CF, because if one thing happens it creates a cascade affect. CF isn't like most. Once you think you know whats going on and feel as though you've got a grip its all taken right out from under your fingertips. We are constantly playing a guessing game. Dealing with and sorting through a million layers of issues.

It's felt like its pouring over here for some time now. The worst part is the feeling of being alone or that no one really understands the struggle. It seems that all anyone can say is "I am sorry" or "I know exactly how you feel" which if I'm honest is complete crap. How could you?  I get that they're trying to be empathic but the reality is that you don't know and by saying you do minimizes what I'm struggling with.

I get that its difficult to find the right words to say to someone like me. Sometimes saying nothing is SO much more powerful than a book full of words. Having someone to just listen to me, without giving advice or placing judgement, is just what's needed. I can't tell you how many times in my 31 years I've heard someone tell me "it'll all work out" or "just stay positive"; as if I'm not already doing everything I know to remain positive.

The best thing you can do to support me is take a step back, breathe and listen. I just need someone to hear me, to lend an ear and possibly a shoulder.

If you have someone close to you who is dealing with some hard medical stuff below are a few things to avoid saying.

But you don't look sick: People expect sick people to look a certain way, but 96% of chronic illness and disabilities are invisible.

You need to think positive: Um, this is just crappy. If positive thinking would cure us, we wouldn't spend billions on toxic meds and doctors. This also indicates that it's our fault we're sick because we just aren't thinking positively enough.

Get well soon: HA!

You're just depressed: Depression cannot be described as 'just depressed'; its much more than that. It's the worst feeling in the world.

You just need to take you mind off being sick: That's just not gonna happen and not helpful. The disease is apart of you. Keeping my mind on my illness is what is keeping me alive. I've got medications to remember, doctors appointments to attend, etc. It's an ingrained part of me.

You need to be strong: The strongest person in the world will have bad days. We all do, because we're human and we need to let our feeling out.

Remember, if your struggling for words you don't have to speak. We humans have many levels of communicating.  A loving smile. A soft but grounded hug. Lending our ears or shoulders.

I'm looking forward to dry soil.

~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'

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.

~Doodlin'

Bag-O-Motivation

December and now January have proved to be incredibly trying months from many different angles of life. Surprisingly my health is not one of those aspects. So, today, when I got a large bag with my name on it that instructed me to open one gift after doing my nebulizer (breathing) treatments each day as motivation, you can image my joy. In fact the joy was so overwhelming that it overflowed from me like a waterfall.

You know I get many many words of encouragement, which I love and will always need from time to time. But this gift was so thought out and so perfect as a jump start to gaining motivation or the reward factor of changing a schedule to accommodate the treatments. Even though I am almost 30 years old, I still need to be rewarded. And let me tell you its so much more pressure (positive) to earn a reward from someone else, rather than me giving myself the reward. I feel obligated to follow thru on my end of the bargain you'd say.

My first gift was a lollipop and a little printed "you can do it" message. While I was doing my treatment tonight, I thought about all the parents who attempt tirelessly to get their children to sit still and do their treatments how great something like this would be. A simple gift to pull from a bag if one does their medications is marvelous. It could be a sticker, piece of candy, a piece of change to put in their piggy banks (dime or a quarter) or whatever your child would enjoy. I also think that this idea works for any adult who maybe going thru a rough time.

Do you know someone who could use a few days of encouragement or motivation? Maybe give this a try it sure warmed my heart and put a fire under my backside.

Thank you Nancy for this wonderful gift.

~Doodlin'

Allergy = Hospitalization Day # Dos

I am happy to announce that hopelessness didn't consume me entirely!

As the night wore on and I realized that I was in for the long haul with no sleep and nothing from home but my cell phone, I decided to utilize my Facebook application. Thank goodness. I put one post about my dilemma out there only to get 29 comments. This may sound ridiculous but it kept me in the game, each time a new comment was posted my phone would ding announcing the news. That ding became a sweet sound of reprieve. I was taken away to FB land to read something that was encouraging and heart-warming. Thank you all.

By about 4am my phone battery had died from all the use and no charger but my CF doctor came in that morning unusually early because of all the patients in different hospitals that he needed to see. I was beyond thankful. During our discussion about the nights events, we both felt that changing the Zosyn to Meropenem was what absolutely needed to happen as it appeared that I had developed an allergy to the Zosyn.

This is not good news. The changing of medicines, yes. The allergy, no. There are only a few medications that Pseudomonas is sensitive to, meaning that can battle the nasty stuff. I now am allergic to  two of those precious medications.

The nurses immediately began to infuse the new drug and I slowly started regain normalacy. The vomiting stopped immediately, although I was left with no appetite for most of day. The no appetite thing had nurses a bit on their toes since I need approximately 3500 calories a day. The use of my feeding tube was halted because the hospital didn't have a particular connector tubing that my MIC-key button (g-tube) required thus zero caloric intake for over 12 hours. B would have to bring the proper connector up later that day. I still could not sleep. All the drugs that were given to help ease each symptom left me in a haze. I would close my eyes, toss and turn, fluff my pillows but sleep would allude me each time. My mom came up sometime in the day light hours of the morning, she came in tow with a bag that B had packed me of all the stuff I wanted from home. In my exhaustion I really wanted nothing to do with most of it besides the phone charger so that I could update my dear and loyal FB friends as well as return the 20+ text messages. My mom stayed the entire day, she simply sat played on her new iPad toy by my bed as I desperately tried to sleep. We would spark a conversation here and there but not much. I really really really wanted to sleep. That's what mom's do, they sit by your side with no expectations to be entertained.

Sleep is a very allusive function while in the hospital under the best of circumstances. In the hospital that I am typically admitted to they do 'purposeful hourly rounding' as the sign in my room to eloquently read. The nurses and/or CNA's came in every hour to take vital signs (temp., blood pressure, O2 stats) in addition to entering to administer my IV drugs, oral medications, etc. The traffic to my room was ridiculous but understandable.

Later in the evening I had a few visitors. My brother came with his two kiddos and my hubby came to stay the night. By this time I was starting to regain some strength, enough so to make a few trips to the bathroom alone and I even ate a light dinner. As night time approached I asked if I could have 4 hours of uninterrupted sleep. My night nurses were very much in favor of this. It was not the best sleep I have ever had but compared to the previous nights events it was bliss.

Thursday, 9/8/11, began with a routine admittance and was worsened by an allergy. By Friday evening I was back to the status I had been admitted for. Hoping that Saturday would show improvement and we could start to look a release date. The one thing I was worried about prior to admittance, the Picc Line, was the only thing working.

Yay, Picc Line!

Thank you everyone for all your kind words. Sometimes we don't realize the full effect of our actions and/or words. Yours helped me get thru the night, gave me the strength to not break down in tears and to not let the feeling of hopelessness consume me. I have a new respect for social media. We don't know what post will make someone laugh or cry or renew their courage.

~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'

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'