Wash, Rinse, Repeat....

Much of the time I feel like I'm on a circular pattern in both health and exercise. Just like with our laundry cycle of wash, rinse, repeat; I, too, feel like my health cycles thus so does my exercise routine. 

It starts to get a tad maddening when you're cruising along, all seems well, you've got a nice routine going and BAM! I get sick or some new development in my health is found, throwing me completely off balance. I quickly find myself having to create a new pattern, a new routine and it takes time to adjust to these types of changes. In fact, I just start to get settled into my new routine or pattern only to be thrown out of balance; repeating the entire cycle over again. 

I notice it the most in my exercise routine/habits/pattern. I guess because I've had CF my entire life I've grown accustom to adjusting my life based on what's happening with my health. But as anyone who exercises regularly can confirm getting back on the wagon after a break or time away is extremely difficult. Its easy to get out of shape but twice as hard to get back into shape.

For me, getting back into shape also requires finding exercises I can do given my new state of health. A good example is that after I developed Pleurisy I was advised not to run, to give my lungs/chest time to fully heal. So, I had to find ways to do just that. I don't think I was very successful at it. I did yoga, lifted weights and tried to get my heart rate up but I just didn't feel the same as when I was able to run or jog. 

Hits like these that are on repeat make it really easy to throw in the towel and no one would blame me; except for me. If I feel like I can be doing better then it doesn't rest well in my heart and soul if I don't make changes to do it better. I convinced that I have just as much control over my health and overall well-being as my doctors and medications. 

After a few months off I made the decision to begin running again. Slowly. My goal is to just run 1 or 2-miles a couple of times a week over the next 4 weeks. It's winter, which means daylight is less and the weather is uncooperative most of the time. So there is no reason to push it. After 4-weeks I'll reevaluate, check in with my CF team and make adjustments as necessary. This is me doing better. This is me saving myself from going crazy. This is me attempting to stop the wash, rinse, repeat cycle that seems to be the trend.

~Doodlin'

Orkambi: 1-Year Update

I can't believe how fast time marches on. As of, Sept 13th I've been on Orkambi for 1-year. I remember thinking I'd never live to see the day that a drug that treated the underlying cause of Cystic Fibrosis would hit the market. However, on Sept 13th, 2015, that much anticipated pink pill hit my hot little hands and I joyfully placed it on my tongue with a big gulp of water - down the hatch it went!

Little did I know just how rough adjusting to this new treatment would be on my body. It was horrific for nearly 3-months. I wanted to throw in the towel a minimum of 5x, thinking this drug just isn't going to work for me; maybe they'll come up with another formulation that my body can tolerate. I was nauseous, had body aches & cramps, and overall felt like I had the flu for three very long grueling months. However, over time it all started to subside. I figured out things that my body needed to accompany this new treatment. For one thing, it's recommended to eat a high fat meal with each dose, this is especially true for me. I actually increased the fat intake to 20-30mg each dose. I also need a full 16oz of water with each dose. That helped with the upset stomach issues. These are still present today. If I don't have either high fat or lots of water I feel off and weird all day long.

So, fast forward to today. I'm feeling really good. I've had a few colds and other CF related issues throughout the year but I've been able to bounce back without the need for IV medications or hospitalization. Bryan and I became foster parents, which brought a different kind of stress to my life, that I am convinced without the aid of Orkambi would have driven me to the hospital.

While I think it has been a wonderful addition to my treatment regime, I don't think it's a miracle drug. Orkambi in combination to all my other therapies continue to allow me to live a fairly good quality of life. I will remain on Orkambi until further notice or something is released that will take its place.

I do think about how it will affect the younger generations. I'm hopeful that when they reach my age they won't be dealing with significant decreases in lung function, pancreatic disease, CF-relataed diabetes, arthritis and all the other things CF affects/does. That taking Orkambi early on in life will assist in dramatically slowing the progressiveness of CF.

We ARE making great strides and there IS so much hope.

~Doodlin'

Lookin' for the High

As a runner, there truly isn't anything quiet like the adrenaline high you get after crossing the finish line or achieving a set mileage/time goal. I feel so far removed from that feeling lately.

Last Friday night I found myself in the ER. I was running a fever, having chills, sweating profusely and my joints were very inflamed and painful. While I've experience this situation before, it's usually because of the serum sensitivity and happens with I'm on IV medications. However, this was different because I haven't been on IV's since 12/15/15.

I just feel like a hot mess lately. I feel good for about a week or so, then I'm right back to square one - feeling crapping. I haven't been able to keep a regular workout routine, which affects so much for me. My mood, my energy levels, my diabetes, my lungs, my depression, etc.... In the brief moments of feeling good I do go for walks or a small jog and when I'm feeling icky and painful I try to do at least 15 minutes of yoga. It isn't much but it's something.

Yesterday and today I am desperately missing the high. That runner's high. That feeling of great accomplishment. When the mind and body function as one and you are in awe of just how awesome your body is and how powerful your mind can be when focused.

I know I'll get back to that place. I have to - for my survival and the survival of those around me. Until then I'm holding on to this image.

2015 Fueled by Fine Wine - 

Finish Line!!

~Doodlin'

2016?! Where Did 2015 Go?

I'm in awe that we're eight-days into 2016. I feel like summer just left us but we're already thru all the Fall and Winter holidays. Just astonishing how quickly time goes by.

I've left this place and you all hanging for quite some time now. Last year was a great year. I accomplished a few goals, started a few new adventures and enjoyed the path thru it all. Here's a quick recap...

My biggest goal in 2015 was to live independently of my g-tube (feeding tube). I was successful in doing so from March until November 13th, when it was permanently removed. Yay! Generally, it takes anywhere from 6 weeks to 6 months for the wound to heal but mine has surprisingly healed rather fast. I figured I'd be on the 6-month end of the healing process. It feels really good to have accomplished this goal. No more stressing about what to wear or how to wear something to conceal it. No more late nights trying to figure out why it's clogged and the machine won't stop it's retched beeping. No more additional insulin shots to cover the night feeds. No more smelly gross feeding formula. Just no more. Thankful.

Bryan and I also began the process of becoming certified Foster parents. We were approved in July and had our first sibling group placed on July 20th. What an eye opening experience. I knew it would be challenging. Oh. My. Goodness. I was stretched thinner than I've ever been in my life; both physically and emotionally. Each child that has come into our home we've gained so much from. They are teaching us about life. I pray they are learning from us as well but I do know they are opening our minds, hearts and home to things we couldn't have imagined.

In July, I finished my 3rd half marathon. It wasn't as successful as the previous half but I finished and that is what was important to me. This particular half difficult for me due to the terrain. We ran thru Oregon's wine country which aided in some awesome views but the amount of uphill was physically hard for me. However, I did cross the finish line!!

I'm looking forward to 2016 along with adventure it brings. I've got some goals floating around in my head and soul so we'll see where this year takes us.

~Doodlin'

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'

From Fall to Winter

Fall is slipping away and winter etches in a little more each day. Just last week we began noticing a beautiful layer of frost covering the ground each morning, making our morning coffee routine seem absolutely necessary and comforting. The fireplace is a blaze in the early hours just before dawn and well after sunset. The couches are littered with warm blankets with the sole purpose of snuggling. I love this time of year.

I love a fresh start that an approaching change of season exudes. For us, winter is a time of slowing down. We find ourselves at home more, in the kitchen more, sharing our time more, and relishing the slower pace of life during these months.

I haven't ran since completing the half-marathon in September. I've been nursing the knee that caused me so much grief and just finished up physical therapy a few weeks ago. I'm exploring new workouts in hopes to aiding in my running once I start up again.

I'm eagerly looking forward to Thanksgiving. This year we are hosting my side of the family at our new home and I'm so delighted. I've already begun planning the festive menu. I love to cook and I love to eat and I love to share that with my family and friends. One thing that I'm trying to hold onto is the idea of being present in the here and now. I'm trying to enjoy Thanksgiving and the harvest season rather than looking past it to Christmas. I'm not watching any Christmas themed movies, which are relentlessly playing already. I'm not changing my decor from fall/harvest to Christmas until after Thanksgiving. I truly and honestly want to take in the Thanksgiving season, The here and now.

Do you have any favorite Thanksgiving traditions? Do you eat turkey or ham? Inquiring minds want to know!

So, while life is moving a tad slower these days I'm hoping to seek this space where my thoughts become text more often.

~Doodlin'

Bucket List is One Item Shorter: Half Marathon Complete

I'm still in disbelief that I actually ran and completed 13.1 miles. I mean, healthy-non CF infected folk- struggle with running that many miles. I couldn't be prouder of myself. Yep, I'm tooting' my own horn.

I've learned so much about myself during all these years of running and training. The thing with running is that even if you have a running buddy you're still on your own. You must have the physical and mental strength to keep going. Sure, having a buddy adds a level of competition which can and does carry you but at the end of the day its just you, your body, your mind and a good pair of running shoes. I guess thats why I'm hooked on running. The self-esteem boost.

When I'm running I'm just like any other person. I'm normal in a weird way. I'm battling exhaustion, breathing, wanting to walk, etc-just like any other ordinary person. Sure, I've got a few tacks on the wall that are drastically different from the other runners, but they too have different tacks than I. Some are faced with age, some are running to lose weight and a better lifestyle, some are burning rubber to overcome injury and the list is endless. We all have our "issues". This is what makes me normal amongst all the other runners.

I was as well trained for this run as I could be given the past 12-months health issues. That said, the last 3 miles were grueling. My lungs felt amazing, I'd done my feeding for a full week leading up to the half, I only drank water for 3 days prior, I stretched my muscles the day before, etc. However, at around mile 8 or 9 my knee starting hurting. I just ran thru the pain to the next water station. It was then that I knew something was really wrong....but I wasn't ready to give up. We continued walking/running hoping the walking would help but it didn't in fact the pain got worse and worse. My usual pace is 11:30 minute miles, but with the knee pain we were more like 13:30 min/mile for the last 3 miles. I had in my mind that I wanted to finish under 3hrs, so the last 3/4 mile I ran, grimacing in pain the entire way. We finished at 2:58:34; just under 3 hours.

Many times during those miles when my knee pain seemed almost too much to handle, I thought of all my friends with CF who are facing end stage disease, waiting for new lungs, struggling with coping and so much more. There pain has no end in sight. If they can continue battling and remain hopeful then I had to finish for them. Even in unexpected pain I pushed through. I knew my pain was temporary. The finish line was in site.

Its funny because at approximately 12.5 miles my running buddy-my mother in law-says "I'm about ready to cry for you".

I looked at her with so much pain across my face and said, "don't you dare, I've still got over half a mile, I've got to keep my shit together...."

We ran in silence both reflecting on all the ups and downs of this journey. All the times I had to step back and play a deck of cards that CF dealt and how we'd pick up the pieces to start over again. Running 13.1 is not just a bucket list item its also a opportunity to prove to myself that I am capable of anything. CF can't take away my drive, passion, and determination if I don't let it. 

My grand finish was met with ugly sobbing. I cried for myself. I cried for all my friends who have passed away never getting an opportunity like this. I cried for all my friends who can barely walk around their homes with oxygen. I cried because their struggles have carried me when my body was too tired.

13.1.......just an item on a bucket list.

 ~Doodlin'

Great Strides 2014

Team Kari Doodlin' had a rocking year this go around. Our team fundraising goal was $750 and as of yesterday we at sitting at $1085. We've officially been Team Kari Doodlin' for two years now and we're the little team that could. We hope to raise the bar each year in both team members and donations raised.

A huge THANK YOU to all who donated and all my amazing team members. The walk is always bittersweet; remembering those who have lost their battle while striding forward to help those who are still fighting.

~Doodlin'

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'

A Girl, Her Thoughts and a 1000-Piece Puzzle

Ever thought a problem or thought to death? I mean, have you ever rolled something around in your head to the point of its near death?! One of my WORST habits is doing just that. I can take almost anything and trap it in my mind; roll it around, shake it up, twist it up until I've killed the very thought or at least distorted it to an unrecognizable mound of nothing or worst until its a mountain so high the top is invisible.

I'm an over-anaylizer. Not really sure how this came to fruition or its origins but sadly I am an over-thinker. If I were to guess, I would assume it has developed overtime; day by day, year by year- from living with CF. Having to be incredibly hyper vigilant about nearly everything from cleanliness to medication names, dose, time, frequency, etc along with having to critically think each step of treatment, major life decisions and more can and does place me in a frame of mind to always be fully engaged. To always be thinking and analyzing.

Occasionally my mind wonders to, what I call, the dark side. A place in my mind that is consumed with death. My death. A place where nothing I do can or will save me from the darkness that is CF. This is where my thoughts get stuck and become distorted. I try desperately not to stay in that place long. A second is too long.

As of late, the CF community has lost far too many in a short span of time. A rush of emotions and thoughts comes with each loss. Being a part of the this incredibly supportive community is a bit of a double edged sword. So much hope yet so much grief. So many bright smiles yet so much sadness. Its in these times that slipping into the darkness is easy. Its hard to see the sunlight when the shadows are close behind.

Over the years I've tried different avenues to help divert my thoughts to less critical or morbid things in hopes to give myself reprieve. As of late I'm finding that a 1000+ piece puzzle can be just the perfect distraction. I find that I go between "thinking" and hunting for that perfect puzzle piece. I like the distraction. I like that I can walk away from the puzzle and come back at anytime. I like that its sort of a memory game, remembering what shape, color and the overall puzzle picture keeps my thoughts in the present. It keeps them from staying in the darkness too long.

CF feels a lot like a puzzle. We know what the picture is. We just need all the pieces to align and match up perfectly to create a beautiful masterpiece. Just like with a real puzzle some pieces look like just the right fit but alas it wasn't, you move on to another piece to see if its the perfect fit and continue on this way until the right piece slips effortlessly into place, getting you one piece closer.

I hope beyond hope that the puzzle is finished within my lifetime. That we can look upon the giant picture to gaze upon all who fought and if one were to look closely that would see the each piece is that of a CF warrior and when viewed abstractly they also see a cure.

Just me. My thoughts. 1000+ puzzle.

~Doodlin'

My Mantra in Two Words

Because……

It's calming
I literally and figuratively strive for it each day
I spend thousands of dollars a year to do so
The world would be a gentler place if we practiced this before speaking
Life is hard
Inhaling new life while exhaling the old gives us perspective
Its life sustaining
Its a Christmas gift from a sweet sister-in-law of mine
It is not guaranteed for tomorrow

Breathe in. Breathe out. Breath in. Breathe out. Ever stop and notice your breathe? I can get so busy that I forget to 'Just Breathe'. To take a moment for myself. To relish in the beauty of life. To look around and see all the blessing.

Lately, I've noticed that I don't have any breathe; spiritually, emotionally, mentally and physically (at times). I have been completely expelled. With all that has been going on with my health and behind the scenes with family and friends.

On Christmas when I opened this lovely little gift I was reminded to 'Just Breathe'. I also was compelled to look at what the Bible tells us about breathing. I ended up being enthralled with the part in the creation story where God breathed into Adam- and he lived. God gave Adam His very breath and all the days of Adam's life were sustained by that one, ONE, life-giving breath. God breathed out. Adam breathed in.

The Spirit of God has made me; the breath of the Almighty gives me life. Job 33:4

I'm reminded to Just Breathe; God's got this.

~Doodlin'