Lung Pain: The Mystery

Man, life has been exhausting lately. It's safe to say that 2017 hasn't started off the way I had hoped, nor did 2016 end well either. In December, I was hospitalized with lung pain. We started the admission off like any other stay with IV therapy, chest PT and rest. We also decided to have a bronchoscopy done to see what the lungs looked like and to "flush" them with a antibiotic rinse. I have never had a bronchoscopy, so I was extremely nervous. The idea of "flushing" my lungs was a PTSD trigger and had me thinking I'd feel like I was drowning. To be honest, it was one of the easiest procedures I've had done in a very long time. Easier than a PICC line placement, seriously!

Nothing majorly unexpected came back for the bronchoscopy. My lungs do have some scaring and diseased areas along with testing positive for Aspergillius (ABPA). Besides that, for being 34 w/ CF, they looked pretty good.

Treating the Aspergillius (ABPA) isn't as straight forward as one would think. Due to a few other medications I'm taking I'm hesitant to start treatment. I would have to stop taking my Orkambi, which is a drug I've waited my entire life to be on and the side affects during the first 3-months were horrendous. I really don't want to go through all that again. In addition, there is no guarantee that treatment will work.

That's all well and fine, but why am I experiencing this excruciating lung pain? Is it Pleuritic pain? Is it just random inflammation? Is it the ABPA?

WHAT IS IT? WHY?

The unknown is so hard for me to cope with. Being active is what keeps me sane and with this pain I can't run or do my exercise machine regularly. Heck, some days I can't even function normally because every breath is painful.

After a few days inpatient I was cleared to go home to complete IV therapy thru home healthcare. Being home always brightens my spirits. Treatment at home went smoothly and as expected. I continued to have lung pain, some days it was excruciating while other days it was hardly noticeable. On the days is was minimal I tried to get motivated to go for walk or do my exercise machine, but those days were rare.

The holidays came and went and so did the lung pain. My life was irregular, no real schedule or regime. I was drugged up on pain meds when it was intolerable. The feeling of no control is a helpless place. I began to recognize that my depression was getting worse. The unknown of why this was happening along with no outlet, no running or brisk walking, to burn off the frustration and helplessness was taking a toll.

This cycle went on until late January I woke up in the middle of the night in tremendous pain. I tried to muster through the night so that I could call my doctors first thing in the morning but I couldn't, it was too much. Hubby took me to the ER, where a CT scan revealed a pocket of fluid in my right lung. I was admitted for another stay.

The first thought was that I had pneumonia, but we sort of ruled that out since I was not exuding other  symptoms related pneumonia, like a fever; only the fluid in the lung. A plan was put in place to receive another round of IV antibiotics, along with pain meds and medications that treat nerve pain. The hope is that my body will take care of the fluid. I'll either cough it up and out or it'll be absorbed.

Here we are at present day. I'm still experiencing lung pain with no idea of why. I'm still largely depressed. However, I'm pushing though. I've start Pulmonary Rehabilitation, I'm doing my exercise machine 2x a week and I ran/walked a mile last week and will again this week. If the pain is going to be there then I have got to figure out how to work with it. Sort of like working with a co-worker you aren't fond of. It's painful at times but you just push though.

Sometimes we have to accept the pain and use it to our advantage. Yes, running is painful, particularly due to the heavy breathing. But it fuels me. It pisses me off and I push harder. CF will not win. EVER. I will make this new normal benefit me and not destroy me.

My goal for 2017 was to run a marathon. It might take me longer to accomplish but it will happen. I will not cry one more tear over the thought of giving up on this dream. I will use that emotion to propel me forward; the pace might be slow but it will be forward movement.

This mysterious lung pain may never be 100% diagnosed and I have come to accept that. I've come back to a place that is hopeful. Each day is full of opportunity to do something; run, walk, yoga, etc.

This is my run/walk last week. I was smiling the entire time!!

We can use our circumstances to hold us back or propel us forward. I want to be propelled to the farthest point possible. Here's to hope and pursuing our goals!

~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'

Vernonia Half Marathon 2015

My goal for this 2nd half marathon was simply to beat my finishing from the 1st half last September. I'm happy and elated to report that on April 12th, 2015 I SMOKED my time.

This run felt amazing. No knee pain, no crazy fatigue, lungs held up wonderfully. Only issue was my toe nail rubbed on something inside my shoe and I might loose the dang nail. But, hey! that's a normal runners issue.

I will again repeat myself in saying that for me there really is nothing that compares to running in terms of confident building, chest physiotherapy and an over-all sense of well being.

I think that having a "finish line" or end point pushes me. Unlike with CF, I continue day-in and day-out to accomplish treatments, medications, etc but there is no true finish line. There is no cure. This makes it extremely taxing to continue to carry on. In contrast, with running I've got a finish line that I'm striving for. Months and months of training yet at the end I get to experience the runners high of physically crossing the finish. Of seeing a goal come to a close.

This day I accomplished my 2nd ever Half Marathon. It's these types of accomplishments I want to remember when my health is ailing and my strength is weakening.

~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'

No More Excuses

After completing my 10 miles in September and being on cloud nine for weeks, I've slacked. I'm still in disbelief that I actually ran 10 miles. seriously. Sure, I got sick and was on IV's but that's really not a good enough excuse. There is always something I could be doing. Strength training, yoga, or just walking. But I haven't or at least not regularly or with any consistency. I've tested the waters, I've dabbled. and shamefully, I've found every reason under the sun to not get my stride back.

Sometimes, the motivation to being regular with working out has to come from outside forces. Or at least this theory is true for me.I need someone to join me, this way I feel guilty for canceling or I just need someone to say "hey, lets sign up for this half marathon" and I on a whim say "yeah! that sounds fun."

So, now I find myself on the roster for the Hippie Chick Half Marathon for 2014. I don't think I can afford to make any more excuses. Thankfully, the run is in Spring of 2014. But I need to start doing something at least 3 times a week. I've got a workout plan that allows me to mostly be indoors until late January. Thankgoodness for a treadmill, youtube yoga and free weights.

I'm nervous and excited all wrapped into a holycowImightactuallyrunahalfmarathon ball of craziness.

NO MORE EXCUSES.

13.1 here I come............

~Doodlin'

Setting New Goals

I'm revving things up a bit. After running a handful of 5k runs I'm ready to bump up to the next level. The 10k is freakishly daunting to think about but I think with a little will-power, muscle memory and grinding my soles on the pavement I can do this. 

When I first started running I shared that journey with you and all the not-so-pleasant experiences in-which that journey entailed. So, why not do the same as I attempt to reach this new goal after all its liking starting over. The 10k is doubling the 5k, so in essence its sort of like beginning the 5k all over again. The training is similar with the exception of knowing I can run for 30 mins whereas when I started training for the 5k I could not. At that time I knew I could walk for over an hour without needing a break. 

Here's to setting new goals and achieving them. I'm officially registered for two 10K's.  One in August and one in September.

My training schedule is as such for the August 10K:

I just wrapped up Week #1 and it feels great to have it done and under my belt. Today, was a fabulous morning for my Saturday run/walk rotation. The sun is out and my lungs felt amazing. My legs are a bit sore but thats to be expected. 

I should note that after each workout I drink a homemade shake that contains fresh fruit and some sort of nut butter to help replace lost calories. 

As a side goal, I want to update you each week with how that week's training went. This will help keep me accountable as well as address any struggles I'm facing or successes gained. Training never goes exactly how I put it to pen and paper. There are times of progress and times of having to take a step back. That's okay and I know that. My body is not a machine but its better, its can adjust!

~Doodlin'

Striving to Live in The Moment

It's been a marvelous week. Truly.

The weather here in the Pacific Northwest has been unbelievable, my daily meditation and yoga has afforded me new calmness and by being complaint with my meds I feel so good.

Part of my meditation is to focus on the present moment without assumptions, judgements, or comparision. This tactic has allowed me to take each day for what it is without feeling the urge to rush through it. I'm not abandoning today because I'm focusing on tomorrow. I've been living right here, in this very moment.

I'm realizing how much stress I place upon myself. Instead of taking on each task individually I'm executing a task but creating anxiety over the next. For example, while vaccuming I'm already mentally moving down the to-do list and creating (in my mind) anxiety about the list. Sort of like it's all gotta get done today. Truth is, more than half of my to-do list on any given day would not be earth-shattering if not completed. No one but me would know it didn't get done.

Just realizing all this is helpful, to me anyway. Mediation is forcing me to slow down, to examine closely what's worth stressing over. I have to say it makes each day a tad more manageable. I feel slightly less stressed.  I look forward to what each day holds instead of the self-inflicked to-do list.

I've been able to place the stress where it belongs and do things that are beneficial to me physically and mentally. Sure, the to-do list didn't get any shorter but I'm happier and feel more at peace. The laundry, dishes, and whatever else can wait, I've got a life to live.

Living with calmness instead of urgency, living in peace instead of turmoil, living right now instead of in the past or future. That's what I'm striving for within each moment.

~Doodlin'

Tips or Tricks?

From time to time I get asked questions from parents whose child or children have CF. The most frequent question I am asked is "What tips or tricks do you have for parents {whose child has CF}?"

My answer in short is always the same. Allow them [the child] to grow or learn to be passionate about life. Without the passion all the hours spent doing treatments, attending doctors visits and being sick will take over leaving them bitter. When we have a passion we see the "crappy" stuff as a means to an end. We have to do the treatments in order to carry-out our passion.

It also helps us to put the "time" it takes to all the treatments into perspective. I mean, an hour twice or three times a day, is nothing if your able to spent 6-8 hours living a full life, right? Sure. There are times when it really totally sucks but in the grand scheme of life its really time that we'd waste watching tv or surfing the internet or texting our friends {by the way you can do all those things while to doing treatments}.

Don't stop your kids from playing sports or playing a part in the upcoming play. Just make the treatments a must-do before they can do what's fun. The fun stuff is what keeps us mentally okay. Chronic illnesses have an incredibly high rate of depression, so the fun is just as necessary as the other stuff with fancy medical names.

Over time they will see that in order to be healthy enough for the fun stuff they'll have to do their treatments. No one {not even "healthy" folk} can run, play the flute, sing in the choir or recite the lines in the school play if they can't breathe. The rewards for doing the treatment will be the ability to participate and that is worth more than mom or dad nagging. BUT it has to be instilled early on that treatments come first so we can do the fun stuff. 

So, to recap my tips are:

1. Find something to be passionate about
2. Instill that treatments and taking care of ourselves comes first
3. Allow your child to do participate in whatever activities they want (within reason) as long as they do their treatments.
4. Set your child up to succeed. Set up a schedule for treatments that works with their hobby or passion.   {Example: get a portable nebulizer so that they can do treatments while driving to games, plays, friends, etc}

Overall, remember they are more the CF. They need and want to do what everyone else is doing and thats okay, as long as treatments are done!

~Doodlin'

The Thing is...

The longer I breathe, talk, walk and participate in this life I find myself in different places, at different junctures, breaking and making assumptions. The one thing that I keep coming back to is this idea or belief that I was chosen to live in this era with this disease. To be clear I do identify as a Christian.

Just when I find myself in a deep valley the sun shines thru a plateau. Just when I feel like I'm breathing under water a pocket of air envelopes me. Just when I feel that the situation is hopeless, hope smiles back at me. I believe it's some what human nature to have such emotions, its part of the journey. You can't understand what its like to be hopeful if you've never been hopeless.

Over the past few months I've been on a roller coaster with my health. I have so desperately wanted off.  The thing is I have total control as to whether I stay on this roller coaster or not. Sure, I still have to deal with my health, be diligent and take care of myself, but it doesn't have to control anything beyond that. It doesn't have to be a looping track, over and over at high speeds leaving me dizzy.

God knows my journey, he plotted it for heavens sake. I believe and sort of always have that my CF is more about God than it is about me. He wants to use it to show is grace, mercy and love to the world. Does this knowledge make it easier when I am in despair. Nope, not really, there are times of great sorrow in this house. It does make me draw closer to God though. God never said it would be easy but that it would be worth it.

I want my life to be worth it.

I want to look back and say that I did rather than I couldn't because _____.

So, the thing is....

step out in faith
be a doer not a can't-er
get off the roller coaster and put my tennis shoes on and start walking
follow my heart
speak edifyingly of others
loves those who hurt
just do
remember that love does

Making assumptions about our lives can leave us stuck. It can dictate where we go and how we do it. Leave assumptions where they belong, on the ground. Because more often than not your assumptions will betray you, leaving you feeling foolish. I have assumed that 37 is my golden number. The average life-expancty but the closer I get to 37 the more I feel I've assumed too little of myself and my God.

I think I'll attempt to take each day for what it is; a new opportunity. Instead of assuming what each day is.

`Doodlin'

Mo'orea, Sharks, Dolphins, Stingray and more....

Last time I left you with a some what gloomy post so to make up for it I wanted to tell you that my life is amazing despite a few rough patches. In November, B and I went on the vacation of our dreams. Many people helped make this trip happen, from the doctors who rescued me with medication right before I boarded the plane to those who helped financially.

We've all seen the picquese scene of turquoise blue ocean water with fancy little huts extended out into the ocean. Well, thats just right where we found ourselves at on the morning of November 2nd. I had an entire suit case full of meds but I vowed that I would find peace on this trip. Peace with the craziness of a life with a terminal illness. I think I found it.... the trick is to use my muscle memory when the seas get rough again!

Mo'orea, French Polynesia

The beauty is beyond real. The 82 degree average temperature warmed my weary bones. The sounds of the ocean lapping against the shore placed me in a state of absolute calmness.

Wishing I could transport myself back to this heavenly hammock! 

We took the plunge as soon as they took us to our over-water bungalow. The water was SCREAMING my name.

We lived in and on the water for 7 days! The ocean is sort of magical. Its calming, yet invigorating. My lungs thrived on the salty air. I began to feel good again even with having been placed on antibiotics just before leaving Oregon.

Just look at this sunset. I don't know how your spirits can't be uplifted with a view like this. I sort of had a huge revelation watching this sunset. God allows all life to begin and he beautifully takes it. When my time comes I hope those who love me will have this sunset in their vision. A sign of a life wonderfully lived in full color.

Yes, ladies and gents! I ROCKED the g-tube. I made that decision along time ago, I am beautifully imperfect. The fact that I have a few scares and the toobie are not gonna slow me down. Everyone on this planet is insecure about something, so let's get over it. Let's see each other for who we are, what our hearts are about and not what our physical being appears like. Plus beauty is in the eye of the beholder. My hubby loves me and my imperfect body!

Sharks and Stingray, Oh My!! I have to admit I was a bit terrified during the boat ride out to visit with these awesome sea creatures. B was beyond excited. Swimming with sharks is a bucket list item for him. The bad part, he now wants to have a close encounter with a Great White. Lord help me!!

 For anyone wondering, B is a huge U of O Ducks fan!! In case this photo left you lost.

My dream since I can remember is getting close and personal with a bottle nose dolphin. I even had my room painted ocean blue with boarder wall paper of dolphins. Its a known fact that I love dolphins. A huge thank you to those who made this possible, you know who you are!

(Goodness, I love this man!)

In the end, you were able to let go. Let go of the pile of bills awaiting money that may never come, the laundry that's in piles, the emails and phone calls that probably won't be returned, the looming threat of early death, the possibility that having a family might not be our path, all the stress that this life places upon us. We got back to a place of thankfulness, silliness, appreciation, love, adventure, and each other.

Until next time! But until then life is a blessing. This space that I call life is truly amazing. God is forever good.

A big THANK YOU to my in-laws, my mom, and my hubby for working his fingers to the bone so that we could have this experience. I love you all!!

As a side note, the pink top and straw hat that I'm wearing is because the antibiotics that I was on made me sensitive to the sun. I didn't want to burn so I found this top and it helped prevent what could have been a nasty sun burn. Plus that hat is a very cute accessory for other outfits!!

~Doodlin'

There and Back Again...A Tale of a CF'er

Its been awhile. I know. Lots has happened both magical and not-so-rosy stuff. From a hospitalization in early October to a lovely dream come true vacation to being sick just before said vacation to a crazy holiday season to being sick again.

There and Back...again!

The past few months I have not been healthy. Just when it seems like we've got it under control and I actually begin to feel slightly better I find myself sitting in the doctors office getting another round of drugs, blood work, etc.

Its toying with my emotions. Like boarder line depression. I'm whinning. I'm getting this out of my mind and soul so I can see the sunshine. I want to be "there" as in back to my base line. I worked so hard for two years, the results were inspiring, but this stint of "back" as in sick is sucky.

As it stands today my lung are rocking FEV1 is 82%, weight is a healthy 123#, energy level is way low, sinuses are looking nasty with a nasty culture of Pseudomonas.

Game plan: tackle the sinus problem. Antiobitics, steroides (I jokingly asked if i'd "bulk" up) and a CT scan.

I should note that I have the most compassionate CF Care Team. Amongst my ugly crying today in clinic they compassionately lovingly guided me back to sanity.

This picture I took on the drive into the city for clinic this morning and it really captures how I feel inside. A ray of light buried among the fog and clouds. But the fog will lift I'm certain!

~Doodlin'

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.

~Doodlin'

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.

~Doodlin'

Gratitude+Attitude+Faith=Hope

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.

~Doodlin'

Rockin' G-tube Accessories

Have you ever googled an image? Ever wonder where all those "homemade" photos come from? Well, they come from blogs just like this one. Interesting? Yes. Maybe. No

Well, today I was trying to find images of g-tubes like mine. I found thousands. The spectrum of age ranges are from very sweet babies that are days old to the very wise elderly. I don't feel so alone.

My point? I found these super duper cute covers for g-tubes. These particular ones are a bit juvenile for me but it inspired me to attempt to make a few for myself. How cool would I look in my bathing suit this summer with some rockin' g-tube cover? The other really awesome part is that you can make them in whatever type of material is most comfortable to you. Total customization.

~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'