National Pet Day

Today is National Pet Day according to google, and google is life....so, um yeah!

I can't remember life without a pet, primarily a dog. We always had a family pet or two growing up and I continued the tradition even after moving away from home. Luckily, my husband is also a pet lover. Together we've had (3) pets, all dogs. Tanner, Stormy and Orion Pax aka Pax. Both Tanner and Stormy are Beagles while Pax is a mix breed of Coonhound and Husky. Last, July Tanner was put to sleep after a sudden health crisis but he lives forever in our hearts and memories. After Tanner's death we took some time to heal but realized that Stormy was lonely without her buddy and so were we, that's when Pax arrived.

Stormy and Pax are "still" bonding, even 5 later. Stormy is approximately 10 y/o and Pax is just shy of 9 months. The age gap is big deal along with Pax's size. Stormy is a calm old lady who enjoys sun-basking, cookies, napping, food, and sleeping. Pax on the other hand enjoys being rambunctious and running as if he's got somewhere important to be and he's late.

I love coming home everyday to them. They bring me such joy. When days are hard they bring a sense of calmness and are always excited to see me.

I simply can't image life without these souls.

Tanner & Stormy - 2016

Stormy - 2018

Pax - 2018

The D.I.S.H

The latest gossip on my lung pain mystery is that I have Diffuse Idiopathic Skeletal Hyperostosis or D.I.S.H for short. The thought process is that the D.I.S.H is contributing but not the only reason for the pain. 

D.I.S.H is a hardening of ligaments in areas where they attach to your spine. In my case, this makes a ton of sense. I've been seeing a Chiropractor for sometime now because my upper and middle back, specifically along my spine, feels very stiff. According to my Physiatris, this can present as lung pain or feel like lung pain due to the vicinity of the areas and is very common on right side. It's thought that I've developed the condition from prolonged Vitamin A use along with having Polyarthritis. 

The inflammation in my lungs from the scarring and long term affects of CF related infections, along with D.I.S.H, appear to be the majority of where my lung pain is stemming from. It feels good to have an idea of what this sudden onset of pain most likely is from. 

However, D.I.S.H is not reversible unfortunately. Once the ligaments begin to harden there isn't much that can be done. We can do a few things to ease the inflammation associated with it as well as prevent other ligaments from hardening. 

To Learn More About D.I.S.H: Diffuse Idiopathic Skeletal Hyperotosis

I've added a few new "medications" to my already ridiculous regime and thus far it seems to be working. I still have a dull pain but it's totally manageable day-to-day. I've begun exercising again, which is amazing. I release a lot of stress and anxiety through the use of regular exercise that living without for awhile had me feeling like I was locked in a small cage.

So, now you're update on the last gossip!

~Doodlin'

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'

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'

Inflammatory Polyarthritis

The past few months have been brutal on the health front. After my December hospitalization and subsequent battle with the serum sickness/sensitivity I never have felt quite back to normal. My joints have been very painful, which have required 3 rounds of prednisone and pain medication for the break-through pain. 

Last month I saw a Rhuematologist who has diagnosed me with Inflammatory Polyarthritis. Which is becoming more frequent in adults with CF. Yay, more fun! I started on a new medication in conjunction with the prednisone as it takes a few months for the new medication to build up in ones system to be fully effective. 

Can I just tell you how much I hate prednisone. I hate the mood swings. I hate the spiked blood sugars. I hate the insomnia. I just simply, plainly hate it. 

I really hope this new medication does it and I can say adios to the prednisone induced cray-cray. 

So, now I'm on a journey called Inflammatory Polyarthritis. Having an autoimmune disease on top of the CF, diabetes, along with the other diagnoses feels so overwhelming. However, I'm doing as much research as I can on it so I can be informed and hopefully make choices that aid in reducing the inflammation.  

Interestingly enough arthritis in the CF population is large enough to have it's own diagnosed "Cystic Fibrosis Related Arthritis" or CFRA. Aren't we special? HA!

Due to all this inflammation and painful episodes I haven't been running. I didn't want to aggravate any joints or bones while we are trying to figure out a treatment plan. I'm hoping that once I begin to transition off the prednisone and let the new medication to it's job I'll be able to lay some rubber.

Here's to hoping!

~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'

Goals

I'm not big on the idea of making a New Year's resolution per say, however, I'm big on goals. I guess mostly because I see personal development, exercise, getting healthy, etc a journey and for me that is what a goal represents. I believe as long as I've taken active steps towards my goal I'm succeeding, even if I don't hit the target date of accomplishment. Where the resolution feels so absolute. If the resolution isn't fulfilled no matter what progress has been made if at year's end I don't accomplish it then I've failed, just feels to defeating.

I've got my goals for 2016:

1. Attend Church more regularly then what I did in 2015
2. Spend time with God every single day
3. Run a half marathon
4. Run a full marathon
5. Read 12 more books then in 2015
6. Take a vacation with my husband
7. Celebrate 10yrs of marriage
8. Work on leadership skills
9. Work on being a better steward of our finances
10. Give to give

There you have it, in no particular order. How about you? Give me one goal your working towards...

~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'

In with New & Out with the Old

Nutrition is such a big battle in my life. Having CF and wanting to be active is a double edge sword. I need lots of or rather a ridiculous amount of calories each day just to keep up with the amount of energy my body requires to fight CF but I also have to compensate for any additional output, like running or biking. It's a difficult task. 

I've had many people tell me how they wished they had that problem. That they could consume and consume. Truth is, no you don't. Trust me. If you've ever struggled to loose weight, the struggle to gain and maintain weight is equally as hard. 

I opted for a feeding tube back in 2008 and have had great success with it. However, the goal has always been to get my weight stable and then maintain without the assistance of the feeding tube. Currently, I'm on a 3-month trial of just that. 

I'd say at this juncture, 2 months in, that I'm doing very well. I'm 2lbs away from my "optimal" weight of 123lbs. My personal goal is 125lbs, It just sounds better and it's easier to track then 123 or 127 or whatever. So, what am I doing nutritionally that is different then prior to having the feeding tube placed?

First and foremost, I've educated myself on good nutrition. What I've taken away is that no matter how good we eat or how clean our diets are; we are still lacking. Then when you add into that medications which can and do deplete or rob the body in some manner it's compounded. Only then to add in the inability to properly digest and absorb all that good clean food while trying to minimize the destructive aspects of medications, we're lacking. Plain and simple. 

Secondly, understanding the areas in which one is lacking. For me, its generally vitamins A and D along with minerals. I know this because I pay attention and ask for my labs that are done every 3-months as part of my CF care. 

Thirdly, I supplement like crazy. I add things into my daily routine that help aid in absorbing, processing, and preparing my system to the best of my ability. I add things like soluble and non-soluble fiber, probiotics, vitamins and minerals. I change my diet to help fix areas where I can not only add supplements in addition to adding high caloric meals and/or foods. 

My biggest advice to those struggling with their weight- gaining or losing, side effects to medications, low energy, digestion issues, and list goes on; is to take a good hard honest look at your what your putting into your body. 

Is your diet lacking?

What do you think you could be adding to help?

What do you think would make the biggest impact?

I'm not saying that you have to throw everything in your cupboard/fridge out. But what could you simply add to help your body? 

For me, it's in with the new and out with the old. I want this old feeding tube gone and I'm ready to reclaim my stomach. 

~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'

One Month Out: Great Strides

May is a huge month for raising funds for the Cystic Fibrosis Foundation. It's during this month that the CFF hosts its single largest event; Great Strides. Great Strides as it's so literally states is when the foundation takes it's great stride to help fund a cure. I know many think, "yup, another way to give over-paid executives more money in their pockets" but I can first hand tell you how completely untrue that is for this foundation.

Over the past 30 years, as I can only speak for those that I've lived, the foundation has been the sole organization to place research dollars in the appropriate hands to raise the average life expectancy from 12-15 years of age to 41. In 30 years. CF was taught in medical school as a childhood disease, because most often they didn't reach teenage years or adulthood.

In addition, to prolonging the life expectancy here's a lovely list of a few milestones:

• 1982 The Foundation creates the Research Development Program, a network of research centers at leading universities and medical schools nationwide.
• 1988 The Foundation launches the Cystic Fibrosis Services Pharmacy.
• 1989 A team of Foundation-supported scientists discovers the defective CF gene and its protein product (CFTR), opening the door to understanding the disease at its most basic level.
• 1990 CF researchers achieve “proof of concept” that gene therapy (in the lab dish) is possible.
• 1993 Landmark gene therapy trial begins in people with CF.
• 1993 The Food and Drug Administration (FDA) approves Pulmozyme^®, which is proven to thin the tenacious, sticky mucus in the lungs and is the first drug developed specifically for CF. The time taken to develop Pulmozyme is less than half of the industry average.
• 1997 The Foundation establishes the Therapeutics Development Program.
• 1997 The FDA approves TOBI^®, the first aerosolized antibiotic designed for CF, which is proven to reduce hospital stays and improve lung function.
• 1998 Specialized clinical research centers are designated as the Foundation’s Therapeutics Development Network.
• 2000 Cystic Fibrosis Foundation Therapeutics (CFFT), a nonprofit research affiliate of the Foundation, is established to govern drug discovery and development efforts.
• 2000 Foundation-supported scientists map the entire genetic structure of the most common cause of CF lung infections — the Pseudomonas aeruginosa bacterium. Researchers can identify the function of specific genes and find ways to turn off the bad ones.
• 2002 A Foundation-supported study shows azithromycin improves CF lung health.
• 2003 Foundation-supported scientists at Structural GenomiX Inc., determine the three-dimensional structure of a portion of the CFTR protein, opening the door to more drug discovery opportunities.
• 2004 Foundation-supported studies in Australia and at the University of North Carolina show that hypertonic saline helps clear CF mucus. It is proven to improve lung function and reduce hospital stays, and becomes a therapeutic option.
• 2006 VX-770, an oral drug in development by Vertex Pharmaceuticals Inc., with support from the Foundation, enters clinical trials. VX-770 is one of the first compounds to attack the root cause of CF, and works at the cellular level to open chloride channels that do not function correctly in people with the disease.
• 2007 Vertex selects a second potential drug, VX-809, for development. Like VX-770, VX-809 addresses the underlying cause of CF, but it works by helping the defective CF protein move to its proper place in the cell.
• 2008 The Foundation and Vertex achieve a “proof of concept,” showing that it is possible to treat the root cause of CF. During Phase 2 studies of VX-770, trial participants, all of whom carry the G551D mutation of CF, show unprecedented improvements in key signs of the disease.
• 2010 The FDA approves a new inhaled antibiotic, Cayston^®(aztreonam for inhalation solution), to treat CF lung infections. Developed by Gilead Sciences Inc., Cayston offers a much-needed antibiotic alternative for CF patients who battle recurrent infections and develop resistance to existing antibiotics.
• 2011 The Foundation announces that Phase 3 clinical trials of ivacaftor (formerly VX-770) showed profound results. Those receiving the drug demonstrated the highest increase on a lung function test seen in any clinical trial of a CF drug. Vertex submits a New Drug Application to the FDA for ivacaftor under the trade name Kalydeco™.
• 2012 The FDA approves ivacaftor for people with the G551D mutation of CF ages 6 and older. The drug is the first to address the underlying cause of CF and opens exciting new doors to research and development that may lead to a cure for all people living with the disease.
• 2013 Vertex begins two large international Phase 3 trials of ivacaftor in combination with lumacaftor (formerly VX-809) in people with two copies of the most common CF mutation, F508del.
• 2014 The FDA approves ivacaftor as a single therapy to treat people ages 6 and older with one of eight additional rare CF mutations, and the drug continues to be evaluated in more patient groups.
• 2014 Results from Phase 3 studies of ivacaftor in combination with lumacaftor showed significant improvement in lung function and other key measures of CF in people with two copies of the F508del mutation of CF, ages 12 and older. Vertex has submitted a New Drug Application to the FDA, with possible approval in 2015.
• 2014 The Foundation maintains a robust pipeline of potential therapies that target the disease from every angle. The more drugs in the pipeline, the greater the odds of producing successful therapies and a cure for CF.

Pretty amazing accomplishments over the past 30 years. Over the next month I'd like to bring some knowledge about WHAT the foundation has actually accomplished with those donated funds.

~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'

Where I Am

Today, I'm in a much different place than....say.... this time last year.

Today I listen to sad music and watch sad movies with ridiculously sad plots because for some crazy reason it makes me feel closer to death. My death. Unpleasant?!

Sure...but that's where I live and survive. Somehow the grayness pushes me to successes. The world of unpleasantries is grey with no sunshine. The world where no one survives is my reality. No one with CF comes out unscarred, or unnamed. I lose a minimum of 2 friends a week.  My world is a marry-go-around of emotions. I log onto FB or  some other social media forum and find out that another CF'er has lost their battle.  Emotions run raw.

Do I trust God? Do I seek revenge? Do I pass over it as though I've never heard their name?

No!

God is forever good. He alone can turn devastation into love. My God is awesome.

I'm at a place of love. God has used me to show hope and promise. God has used others with and without CF to show hope and promise. Today, I'm home thinking and pondering God's journey for me. I do believe my path lies in helping those who need it. I will encourage and support.

I'm engrossed in about 10 books. All centered on God. All showing what hope is out there if we accept. I love my God.

I'm at a place of love. Of God. My reading list is all centered on God, He alone has brought me to this place. He is my salvation, no other! I hope you can trust how great my God is.

God helped me achieve my goal of completing a half marathon. I truly have no doubts.

I don't discriminate. God loves us ALL. I believe that whole heartily. God knew from the beginning of time what kind of difficulties we'd face. He is here to deliver us. Sin or Saint. I'm most certainly a sinner.

Engaging in sexual intercourse before marriage, yet I'm forgiven. Having taken drugs, yet I'm forgiven. Harboring hate in my heart, yet I'm forgiven. So, much more....yet I'm forgiven.

My God is amazing!  His love can move you. Can restore you. Whether you identify as homosexual, gay or lesbian, jew or gentile. His love is redemptive. I love ALL of God's people.

I'm in a place of reading, cooking and simply living in the presents of those who love me.

I love finding a new recipe to cook. I love setting the table for six rather than 2. I love feeding those I hold near and dear. I love all that God has provided.

I've identified as a self-mover. Meaning....I'm moved. No else could pick my feet up or my head.... just God.

The more I got to know God I came to understand how he loves us. His love is what lifted my feet and head. He alone carried me when my body was weak. He loves me enough to see my dreams come true. He rejoices as I succeeded.

I believe EVERYTHING happens for a reason. I hurt my knee during my first attempt at a half-marthon for a reason. The reason was hard to understand at first...but its for His glory. God gave me a reason to take a break....to breathe...so that I could see what had been accomplished. What so many had pushed me to achieve. I'm so grateful.

Where I am is place of worship. A place where God is completely in control. As place of understanding. Man, my God is amazing. I sure hope you spend sometime getting to know Him. To understand how much He loves YOU. To build a relationship that is so deep, nothing...I mean NOTHING...can separate you from Him.

Do you know my God?

~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'

Delayed Goals

Ever since running the 10-mile portion of the Newport Half Marathon last September I've had my heart set on completing a full half marathon. In late November I found one that was close to home with a very appealing course-so I signed up!

I had no expectations on meeting a personal record or anything more than simply running and completing on my own accord. Thru out winter I had some ups and downs with my health which delayed training to some degree but nothing that was so severe that I thought I would have to place this goal on hold.

However, in April I found myself faced with a difficult decision whilst sitting in a clinic room. A trip to the hospital in hopes to stabilize or regain lost lung function or delay said hospital stay until after the half marathon. It might sound like a no brainer to some but for me it was a decision that took me 24-hours to make after consulting my husband.

You see I have a dream to run 13.1 miles. I don't know if this will be my only chance. I don't know if I'll find myself in a dire health situation that would cause me to not be able to ever accomplish this dream. However, the hospital... the medications... the treatment... will all be there should I choose to delay by two weeks.

I just wanted to be able to put my dreams first instead of my health. I get so tired of having CF come before nearly everything. I wanted it just this one time....

With that being said, living as long as possible in as good as health as possible for my husband, my mom, my brother, my dearest friends- is and will always be more important than any race or run. The high of accomplishing this small dream is nothing in comparison to all the amazing things those in my life bring me. I want to be around and healthy enough to enjoy life with them. So, just 24-hours after being in clinic I had my bags packed for the hospital.

I had made a game play to run/walk the Hippie Chick Half on Saturday, May 10, 2014. As the date quickly approached I began to become aware of just how weak my body was from being sick. The night before the run I made a call to not participate in any fashion. With my bodies weak form coupled with uncertain weather conditions I felt it was too much to risk this early after hospitalization and home IV's.

My dream is not crushed. Its simply delayed. My spirit is not broken just a bit bummed.

I will accomplished 13.1 miles!

~Doodlin'

Honored! Top 35 CF Blogs

I'm so honored that someone has placed me and this space where my thoughts become words as worthy enough to nominate as one of the Top 35 CF Blogs.

I started this space for therapeutic purposes but it has slowly transformed into so much more. Just as this blog has transformed so have I. I've realized the power of turning pain into purpose, strive into success and sadness into beauty.

My greatest goal for this space is to inspire my readers and fellow CF'ers to see this disease differently than the heartbreak it often brings. To see the humanity in it.

Thank you ALL, I'm tremendously honored.

~Doodlin'

5K Ghost Runner for More Than Just Me Foundation

On April 12th, 2014 I will be running a 5K around my neighborhood as a ghost runner for the More Than Just Me Foundation. I'm sure your wondering a few things.... Whats a ghost runner? What is the More Than Just Me Foundation?

The More Than Just Me Foundation (MTJM) is a great organization set up to help those with CF and their families. This foundation differs from the CF Foundation in that they support the patient and families directly rather than through funding research. Both aspects are equally important. MTJM is an active approach to assisting those in need.

Click here for more info on MTJM 

MTJM is hosting a 5k run in Florida, but since I'm in Oregon I will be running as a "ghost runner"; meaning I'll just run my little 5K anywhere that is convenient while others run in Florida. I'm seeking pledges in hopes to help those who are struggling with the financial side of CF related care. If you'd like to make a pledge to my campaign please click the link below:

More Than Just Me 5K-Pledge

I truly do think its important to support those who are struggling to pay for care. We can create new medications or new technologies to make life easier but if those who need it can't access them because of barriers such as finances then what good are they?

I look forward to seeing how much we can secure together. I'll be putting my feet to the asphalt along with $25 of my own dollars. Won't you help me help others with a $5 pledge? It's easy and only takes a few seconds: PLEDGE

~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'