Friday, November 11, 2016

The Book Challenge

Being that I'm an avid reader and I do lots of it during my breathing treatments. I started a reading challenge at the beginning of 2016 and I'm loving it. I've never participated in a book challenge before. I love that each book I log as read notches me closer and closer to my goal. It's fun to see progress like that. Sometimes in life we don't get to see progress as it's occurring but only when we stop to compare the then to now do we see change or progress. I know that's definitely true with my fitness level.

My challenge won't officially be over until mid-night on December 31st, 2016 and I'm sort of feeling like I need to hurry up on get a few more read so that I can not just complete my goal but smash it out of the ball park.

When I signed up for the challenge I simultaneously joined my library's book club and it's been a real treat. The book topics are very unique because each year club members submit books that they'd like to club to read and then the group vote's them in or out for a total of 12 books; one book per month respectively. Not only am I reading books I probably never would have I am also getting to know many of the folks in my local community.

I will definitely be doing the book challenge again for 2017. Hopefully, I'll have the guts to increase my books read by a few more than what I get through this year.

What types of challenges did you participate in this year? Will you do it again?

~ Doodlin'

Friday, October 28, 2016

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.


Tuesday, October 11, 2016

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.


Tuesday, March 15, 2016

Vacation 2016 - Channelling Our Inner Child

I'm a big believer in taking a vacation. Whether it's simply staying home or going some where you've alway dreamt of. Taking time to for ourselves and our relationships are so important.

Last October, hubby and I discussed doing just that. We were torn between two different destinations; Costa Rica and Atlantis at Paradise Island Bahamas. We eventually settled on Atlantis. Our reasoning was that we aren't getting any younger. So, we clicked the "book" button for a Bahamian getaway in March 2016.

Fast forward.

We are back from our Atlantis vacation We had a great time. We were able to be kids again We were thrilled by the ability to channel our adolescence side. We spend our time exploring the marine animals, all 22,000+ species of them and the AquaAdventure park.

I love just going, seeing, doing and adventuring. I guess you'd say I'm pretty easy to please. Channelling my inner child was more fun than I thought it would. Being a serious adult has become so ingrained in me that sometimes I forget how to have fun.


I'm so blessed to have husband who works his tush off so we can have amazing experiences in life together. He's so amazing. Seriously!

We have a fabulous time. I don't know how many times he/we did the slides or river but I can tell you it was fun - even for 30+ somethings as ourselves.

Many of the rides allowed double inner-tubes. We took full advantage of the rides let us go together.  When we wanted a little R&R we simply found a lounge chair and basked in the sunshine. But that was second to the rides...

All-in-all we had a great time and wished we were still there or at the very least brought the sunshine back to Oregon with us.


Thursday, March 10, 2016

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!


Tuesday, February 16, 2016

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!!

Monday, February 8, 2016


Can I just say I'm so thankful it's February?! I've been sick off and on since mid-November and last weekend is the first that I've felt like I've turned the corner to greener pastures health-wise.

Winter is just so hard when you're susceptible to viruses and bacteria. I know this and I make the best attempt to ramp up my immune system in Oct/Nov in hopes of dodging some the icky stuff that gets passed around.

So, after spending a week in the hospital just prior to Christmas and spending a week at home on oral antibiotics in hopes to stave off another hospital admission in late January, we are here at the glorious month of February. February usually seems to be turning point. People are less sick. The weather is slightly less gloomy, with patches of spring-like days.

Winter 2015/2016 seems to be wrapping up, taking with it all things I strongly dislike about this time of year.


Monday, January 18, 2016


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...


Friday, January 8, 2016

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.

Related Posts Plugin for WordPress, Blogger...