Saturday, December 28, 2013

My Mantra in Two Words


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

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

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

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

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

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


Friday, December 13, 2013

Serum Sensitivity Follow-Up

In an effort to truly determine if I'm experiencing a serum sensitivity/sickness we had decided after my Penicillin allergy test came back negative to give one of the drugs a trial run while I was "healthy" to help isolate whether my symptoms are directly related to the medication or the infection. The only way to do this was to place an IV and administer a full dose of the medication. In this case it was Ceftazidime.

Wednesday morning, I was up early and on my way to nurse treatment to have an IV line placed. This gives me the biggest anxiety. Generally, it takes multiple attempts or they are unsuccessful and refuse to try again and must bring in a specialty nurse.

Upon check-in I was greeted by a nurse who has treated me in the past. She respects my anxiety, health condition and preferences, which makes a world of difference. She placed me in a quite room and immediately hot packed the arm and hand that showed the most promise. While we let the warmth of the hot packs do their magic I read. Reading helps calm my nerves because I don't think about what lays ahead but rather I become enveloped in the characters of what I'm reading. After about 20 minutes she came back in and prepped me. In one swift poke she was in the vein, drawing back blood and flushing. Success!

After the medication was fully administered I sat for about 2 hours under observation to see if I would have any immediate reactions or an anaphylactic response. I did not. I remained hopeful that I would not react and was prepped to head home.

About an hour after I got home and settled the chills and an ache in my joints began. I knew right away this would be a long night. I took a hot bath to help ease the aches and pains and put on warm pj's. By the time B got home I was in full reaction. Upset stomach, severe joint pain and swelling along with the chills. By 6pm I was in bed trying to sleep it off. I was incredibly thankful this was just one dose and that the symptoms would ease off as the medication made their way through my system and that I didn't have to give another dose thus continuing the cycle.

Needless to say the reaction is not the infection but my body's reaction to the medication. Not what I was hoping for, however, now we know which direction to go in terms of treatment. We, doctors and I, are in collaboration on what that looks like. 

CF can be frustrating. I'm choosing to not let this frustration get under my skin but rather remain as positive as possible and trust that we'll get this figured out. I'm gonna take it one step at a time and rejoice in the small victories like; the IV was placed in one attempt………ONE!!!


Monday, December 9, 2013

5 Years!

November 29, 2013 marks 5 years with my Gastrostomy or g-tube rather. While this may sound silly or irrelevant to most its been a journey worth marking in history. A journey to self-acceptance. A journey to self-love even as CF marks and mares my body. A journey to being able to "do-whatever-it-takes" to be healthy. A journey on sooooo many levels.

November 29, 2008 was ugly. In fact, the middle of November thru January 1, 2009 was REALLY ugly! I hated the g-tube. I hated that CF had once again dictated things for me. I hated that B and I spent Thanksgiving in the hospital. I hated that when we got home our whole life was changed and rearranged to accommodate my CF. I mean, I HATED IT.

Over the next two years I gained nearly 20lbs which was hard, even though I knew that's what would happen and the whole purpose of the g-tube But as a woman, gaining 20 pounds is brutal. I heard comments like "that can't be healthy to gain so much so fast" or "I could never gain 20lbs; I would feel so fat." Silly as it was I read into those comments and as my waist line grew so did the self-doubt. As I went from a size 0 to a size 4, I felt the opposite of healthy.

Until I looked back at pictures of myself. I was all bone and skin. I wore a size zero. I was barely 100lbs and remember feeling as though I was starving all the time, I mean I even stashed food by my bedside. I was always one to eat whatever I wanted and lots of it but being pancreatic deficient I just couldn't keep the weight on. I took lots of naps because I had no energy. I was diagnosed with onset Osteoporosis from chronic malnutrition. The list of goes on and on….

Yet, my mind was so warped about body image that I thought I looked good. I proudly aired that I could wear a size zero, not many 25 year old's can say that. My body was literally slowly shutting down and on some level I was okay with that as long as I "looked" good.

Today, 5 years later, I feel like a new person inside and out. Being on this side of the journey looking back I wish I had opted for the g-tube sooner. I now fluctuate between a size 4 and a size 6, my BMI is a healthier 21-22% and I have the energy to participate in my life. I still have difficult moments of fully accepting my new body but overall I love it. I love that I'm able to set goals like running a half-marathon and know that I have the muscle/fat to do so. I love that I can shop in the women's department and not the little girls. I love that my latest Dexa scan for Osteoporosis showed "normal" bone mass levels. My need for emergency medical intervention has decreased. My lung function has stablized. I just love all the benefits I'm reaping. But, it took my a long time to get to this point. I had to learn to be kind to myself and to have patience with myself.

Today, I'm a huge advocate for the g-tube when needed. I'm on my physicians list of folks to call when they are recommending a g-tube placement to another patient. These patients all have the SAME concerns I did in the beginning. I hate that they would choose to not do it because of body image or the fear of what others will think. I want them to understand how great life with it can be, if, they're willing to embark on the journey.

Initially doctors felt I would only need for about 5 years but honestly I want to keep it for as long as I'm still benefiting from it. Which at this time I don't see a reason to pull it. It keeps me alive and thriving!

I am glad those hard years are behind me.


Tuesday, November 19, 2013

Serum Sensitivity

Let's recap a bit……

September 19th, I had a PICC line placed to begin yet another round of IV's. My PTSD kick into full gear and I was overwhelmed. Thankfully, the PICC placement was text book smooth. After getting home and administering my first dose of Meropenem I began spiking a fever, vomiting and getting the chills.

I knew it was not the infection causing these new symptoms. I pushed thru the night until the next dose was due. Weird thing is, right before I started the next dose my symptoms started to ease up, which is largely why I felt it was not the infection. So, I got in touch with my doc and we decided to switch meds.

After going into clinic to receive the first dose under observation I was fine. B and I went home thinking all would flow as it should and we'd get thru the next two weeks fairly smoothly. Nope! After administering the second dose the symptoms returned.

Each time this has happened that particular medication has been placed on my "allergy" list, meaning I can't use it. The severe issue is that with these symptoms I also develop low white blood cell counts and/or neutropenia which is dangerous. This also is quickly depleting the pool of medications I can use to fight my infections, that's dangerous for someone who needs them to fight infections that left unchecked will cause severe lung damage and erode my life span.

Funny thing is that this has been happening for a few years now. While we didn't exactly know it when it began we now know we've got to figure out why my body is reacting to the medications this way. In 2011 it happened and then later in early 2013.

In order to get the medications in my system and help subdue the infection, we decided to address the symtopms with anti-nausea meds and a fever reducer. This cocktail worked for the most part until pharmacy called an told us that there is a drug reaction between the IV medication and the anti-nausea medication in where heart issues can occur. At this point, I was beyond frustrated. I now had to go get an EKG done to ensure no long-term damaged was sustained by my heart. With great relief I can tell you it did not.

At that point, I stopped the anti-naseau medication and just suffered thru the last few days of IV's. Needless to say it was a very unpleasant 3 days. The only way I know how to describe it to say that it felt like I was being poisoned.

The CF doctors and I set up a game plan to try to figure out why my body is reacting to some many medications and even ones that are not in the same family.

Game Plan:

#1) Find out if I have developed an allergy to Penicillin. Many of the IV medications are in the Penicillin family.
  • This was done 11/13/13 and was negative

#2) Try to isolate the symptoms; are they truly from the medication or is it my bodies reaction to the infection
  • This will be done on 12/11/13

#3) If its the medication, figure out what other medications can safely be used to help ease the symptoms (i.e. adding prednisone)

Because the Penicillin testing was negative and I showed no signs of any reaction it has been determined that my reaction to the medications is an immune reaction to either the infection or the medication. It is of a serum sickness and/or sensitivity type reaction. Finding out if I react to the medication when I'm in stable health will allow us to differentiate whether or not my symptoms are because of the infection or because of the medication.

All of this will determine if and what medications I can use in the future. I'm sort of freaking out inside. These medications are vital to my survival.


Monday, November 11, 2013

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.


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


Wednesday, November 6, 2013

Wordless Wednesday

Recognizing 7 years of marriage. September 3, 2013

 He's just so darn handsome when he's doing what he loves. 

A little weekend trip to Newport, Oregon. Taken a few hours after completing my 10 miles! 


Tuesday, November 5, 2013

A Pick-Me-Up

I've had a wacky past two months. Some of it health related and some it is just normal life craziness. All of it combined had left me feeling overwhelmed. Two posts await editing that I've meant to publish for weeks now and honestly not sure when they'll be ready or rather when I'll be ready.

With all this feeling overwhelmed, this fantastic video puts a lot into perspective for me.


Tuesday, October 1, 2013

Like Clock Work?!

Its Fall. Its fairly easy to tell when Summer slips away letting Fall sneak in here in the PacNW. The days become ever-so-slightly shorter, the leaves on the trees begin turing a beautiful burnt orangish/red color,  the temperatures are cooler and the early morning hours have a crispiness to the air with just enough fog to give the hours just prior to sunrise a mysterious feeling. There becomes more rainy days then sunny days leaving you wanting to snuggle with a blanket and book in front of the fire. This is Fall.

My body knows Fall. I am coming to the conclusion that with Fall comes illness; for me. It's like clock work around here. September or October and I'm out of commission. I haven't the faintest idea as to why or how.

Maybe, I get caught up in the Summer time fun, thus draining myself of the reserves necessary for when the weather changes and/or the cold/flu season hits?

Maybe, there's something in the air as Fall approaches that my body doesn't like?

Maybe, my CF is on a cycle, wherein everything works great, treatments do their job and then the bugs find a loop hole, causing an exacerbation?

Whatever it may be I can tell you its Fall.

Just like we can expect Summer to turn to Fall, I, too have change from healthy to sick. My leaves (mucus) have changed colors, my days are shorter (naps) and I feel cold and foggy wanting to snuggle with a blanket and book by the fire.

At last, its just a season. With its own beauty, lessons and renewal.


Sunday, September 22, 2013

Pushing the Boundaries

Being an active member of the Cystic Fibrosis community has been so empowering. It's truly inspiring to see so many carrying out their dreams;  educating us all about what endurance means, what waking up each day with a purpose looks like, and what it truly means to change a culture. Over the past ten years the culture of having CF has been changing. From being a victim of a life-shorting disease to one of making CF be the drive to excel and reach new limits.

Only after getting to know a number of those in the CF community did I really look at running as a way to life longer, truly. I saw a transformation in how healthy these people were, but I also saw how they endured even when CF had a mind of its own, which it often does.

This past week a video project that some in the CF community were apart of was released. It's aw-inspiring. It makes me want to reach for new heights. To say the heck with limitations and just push as far as I possibly can. I encourage you to watch. These CF'ers are flippin' amazing. I wanna be like them: one long distance at a time.

Living Xtreme Beyond Cystic Fibrosis

In my running endeavors I decided to attempt to run the 10-mile leg of the Newport Oregon Half Marathon.  On Saturday, September 14th I did it. I ran the farthest to date of 10 miles in 1:48. The run was gorgeous. We started out on pavement, worked our way to a gravel road along a Big Creek Reservoir and then to the beach for the last 4 miles. I knew going into this that the beach would be the most difficult part since I have never trained on sand, and it was. It was all mental and a number of times I wanted to walk but I didn't and I'm so glad I didn't. Running a crossed the 10 miles marker with Hubbs cheering on the sideline was so freeing.

I kept this goal under rapes because after the 10k in August I was sure I could add that much mileage in such a short time. I didn't want to over do it and cause injury or ware myself down and get sick. So I just continued to train as usual and when the day came I felt like I would know if I could do it or if I should wait. I wanted to be realistic.

So, now that I have 10 miles under belt I'm ready for a new goal!!


Friday, August 30, 2013

The Moment I Became a Runner!

I hear it all the time "Oh, I run!" or "I'm a runner!"

My question is when did you become a runner?

At what point did you feel like you could label yourself as a runner?

I ask because I think I've had that feeling. I think I might be a runner.

My epiphany came after not running for a few days after having ran every other day for almost 3-months. Something was amiss. I just didn't feel right.

After lacing up again a few times a week I feel good again and whatever was amiss is no longer.

So....this is the moment a runner is born. Is this when I became a runner?


Tuesday, August 20, 2013

Finding the Balance

Finding balance between who I am with CF and who I am as a whole is difficult. Its hard to separate the two. For me, I think its a journey worth exploring.

As a whole I have many likes, interests, hobbies, aspirations, achievements and more. As a person with CF I also have many likes, interests, aspirations, achievements and more. Sometimes, the two overlap and the lines are blurred.

The older I get I'm realizing that in order to be able to accept and heal from the things in-which CF takes from me or causes me to experience I must understand who I am as a whole. Understanding this difference can help me fear CF less. Separating the two will allow me to not be over dramatic about something CF is imposing because I know/understand it doesn't matter to myself as a whole. You know, sort of like, you never knew you wanted to color until someone took away the crayons.

If CF were cured who would I be?

Things I know for sure is that I would still be a.....daughter, sister, wife, auntie, a friend, a lover of books, a sitcom junkie, a foodnetwork fanatic, a pasta-eating-machine, a brunette whose hair is curly, a freckle-faced 31 year old with blue eyes, and soooo much more.

Things I'm not sure I would be if I didn't have CF........ compassionate, driven, overly sensitive, passionate about healthy eating and exercise, a Christian, afraid of death, fearful of what the future "might" not hold, an understanding that life is too short to be taken for granted, and lots of other tidbits.

Its just sort of a weird phenomenon. Of course, CF has shaped who I am and how I maneuver thru life. That would be silly to think otherwise. But what parts of me are the CF and what parts are just plan old me?

Am I driven to run because of CF or would the logical order of who I am cause me to run at this age?

Am I overly sensitive to those hurting around me or living in poverty because on some level I understand suffering because of the CF or is this just another aspect of the core me?

Am I a person who gets lost in a good book because of spending countless hours sick in bed because of CF or is this too just another part of the core me?

I don't know.

I don't know if I'll ever truly 100% know.

I have a hunch that when this life is over is when I'll know.

But I'll never stop exploring and trying to understand how CF has affected me and what parts are just me.

Maybe CF's influence isn't all bad or shouldn't be viewed in a negative light. I would venture to say some parts of having CF have made me a better person.


Saturday, August 17, 2013

In Other News

It might be hard to believe but I have a life outside of running. haha! Although some days it feels like its consuming me.

This summer has been great. B and I are on a Wednesday night bowling league that has been so much fun. Frustrating at times because I'm not that good but its a fun activity to break up the week with. We bowl three games each Wednesday night, which for me is just enough. Everyone on our team but me is making improvements, I seem to be very inconsistent but I don't take it very seriously either. I believe our team is in last place or second to last, but we're having fun!

In addition, we found time to cook together. I know I've mentioned that B likes to cooks a time or two but I just love it. Its nice to have another set of hands or another someone to make a meal if I'm feeling under-the-weather. We had made a plan before the CF Cycle for Life ride that we'd make fettucini the night before and then make ravioli for the night of. We started out assembling both the night before so that after the ride we didn't have to do anything but boil the ravioli. Here is our pasta making frenzy:

Dough Making:

One for fettucini and the other for ravioli:

Preparing dough: 

Cutting fettucini:

 Fettucini final product: Blackened Chicken Alfredo 

We make a pretty good team! The fettucini was sooo yummy. The bonus is that I can add my Duocal (fat soluble powder) to it for added calories which B just gets the normal fatty goodness that is Alfredo. I failed to capture the ravioli process on camera, but its just as easy. If you've never made your own pasta I highly recommend. We've been doing for almost a year and the pasta is just so much tastier. You can add whatever you'd like to the dough for added flavor without all the crappy stuff.

So, thus far the summer has been filled with good food, good friends and a lot of exercise. We have our 7 year wedding anniversary coming up in just a few short weeks and I'm planning a hot date in downtown Portland, shhhh!


Tuesday, August 13, 2013

Huckleberry 10K= ACHIEVED

I am so proud of myself. Going into this 10K training I knew it would be challenging and exhausting but I never gave up, even on the difficult days. I held myself accountable every step of the way and it feels sooo good to announce that I accomplished what I set out to do.

The Huckleberry 10K & Half Marathon was a beautiful route. The temperature was perfect; cool in the morning but slowly warmed up as the sun came up. The route was a paved surface which is what I had predominately trained on. Honestly, I couldn't have asked for a better set up and conditions.

As we stood at the start line waiting for the horn to blow announcing our start I had to swallow back tears. So many emotions ran thru me. Jubilation that I'm even able to "think" of taking on such a goal. Guilt for being this healthy while many of my friends have passed away or are in a serious battle for life. Sadness for my friends who have passed, that they didn't get a fair chance or the opportunity to breathe so deeply or simply run. I don't just run for myself but for those who can't or couldn't. I feel that I owe it to them to try and not waste my good health and in addition so that I don't look back when my health is failing wishing I had done it.

As we passed the start line we paid close attention to our pace. It's very easy to get caught up in the joy and energy of those around you and run to fast too soon. We wanted to keep a 10:30-11 minute mile, which we do a pretty darn good job regulating. As the first mile came and went we started to separate from the masses to settle into a comfortable pace. At the first water station we stopped to take our long-sleeve shirts off and sip some water. As mile 2 came I was excitedly thinking "nice, only 4 more to go" but in mile 3.5-4.5 its mostly all uphill. A gradual hill, which is almost worst than a quick steep hill, as it drags on and on and on. At a few points, I had to stop running and lundge up the hill so that I could catch my breath. I can't remember but we did stop for water another 2x, which we walked for about 30 seconds afterwards. The hill just kept going and going and my mother-in-law was second guessing if the route was accurate because our gps watches were telling us we were half-way yet we were still running away from the start and not towards. I told her that either way at the top I was turning around, I am not prepared to run farther than the 6.2 miles. Shortly, after we saw the turnaround point but we both were still a bit confused about the distance. At the last water station which was at the bottom of the hill the water-lady said we had one more mile and I was astonished because my garmin gps watch was telling me something different. We then began the climb of another yet shorter hill but on the backside I started to notice signs of the finish line. Here I was preparing myself for another mile roughly yet the finish line was just seconds away. For the record, the route was correct, they routed us a different way back that was shorted. I was amazed. I was feeling tired but overall pretty good.

As we came a-crossed the finish, Big Foot was there to celebrate our arrival. I gave him a high-five, got my finisher's metal and a water then as  I was walking off the emotions overflowed and I had a moment of ugly crying. Its still hard to reconcile that I actually did it. That at 31 years of age with Cystic Fibrosis I ran 6.2 miles in a very respectable timeframe.

My official time:

Things I've learned about myself:

1) When I truly put my heart and mind into something, the results are amazing.
2) My body might have some limitations but its still miraculous.
3) Having CF has been a blessing by which it forces me to act now and not take life for granted.
4) Nothing is impossible, cliche but true!
5) My inner strength is a force to be respected.


Wednesday, August 7, 2013

Exhaustion Is Setting In

All this training and working out is exhausting. Not just the act of working my body but the planning my days to incorporate the workouts. When I thought about preparing for a 10k I thought it would be great to do so during the summer. I figured it would force me to get outside to enjoy the sunshine and fresh air. I am doing just that; enjoying the fresh air and sunshine, but I'm over the heat. The air is fabulous on my lungs, my spirit and makes me feel refreshed. The sunshine is giving me that sun-kissed glow and it brings out my freckles. But the heat. It's too much. I've adjusted my training schedule and life to allow me to get up and run between 5:30am- 6am. I'm an early riser but to be up, awake and ready to run is a different story. It makes for an extremely long day. I forgo my morning neb treatments until after I get back from my run just to save time and beat the sun. The entire thing is exhausting. I'm rethink attempting such a task during summer. Winter is looking mighty appealing.

We recently bought a portable A/C unit but with all my medical stuff and the dog kennels we can't fit it into our bedroom. It does work greatly in the guest room, so we've sort set up shop in there on the nights when it doesn't cool down enough to sleep comfortably. Flopping between two different beds is probably a contributing factor to my exhaustion.

While I'm exhausted I'm oddly simultaneously on cloud nine. I'm setting goals, achieving them and that feels great. Better than great; amazing. It makes heading to bed a 7:30pm and crawling out at 5am worth it. The sacrifice is so worth it. My overall health is better for it.

The behemoth task of incorporating a workout routine or training schedule feels overwhelmingly impossible and too consuming. Not gonna lie, there are days when it just feels like too much or that I'm pushing my body too hard, but pushing thru those feelings is what makes me feel like I'm actually making a difference in my health and progressing in my training. I've mentioned in my workout updates that I went into this knowing that I would be making adjustments along the way and that just because the schedule "says" I'm gonna run x-miles I might actually do something less than what's planned. I'm okay with that. As long as I do  something I know I'm not taking steps backwards.

My 10K is this Saturday and I'm taking Thursday and Friday off. No running. I will be stretching and walking the dogs. I'm eager to check this goal off and move on to the next. I keep joking that after the run Saturday I'm gonna sleep the rest of the day and Sunday too!!

The upside to this type of exhaustion is that its from getting my body in-shape not because I'm sick and my body is worn down from crudeness.


Tuesday, August 6, 2013

35-miles all for CF Cycle for Life

Riding in the truck on the way home the reality of what I accomplished brought me to tears. At 31 years old, approximately 6 years from the average life expectancy I crossed the finished line of a 35-mile bike ride to benefit and fund more life saving advancements in CF. I did it!! No one pulled me, carried me or helped me a-crossed (with the exception of moral support and words of encouragement) the finish but me, myself and my pure determination to not let CF win.

We cycled around Henry Hagg Lake and thru two towns; Forest Grove and Gaston. The company B works for Cascadian Landscapers, Inc supported the team and my ride. I was the ONLY rider with CF and dubbed the Ride Ambassador.

Team Cascadian Landscapers, Inc!

The weather was perfect. Not too hot not too cold. We shared laughs along way, struggled up a few hills as a group and ended the day by eating while having a glass of wine on the lawn, that is after I laid like a dead person to regroup myself. Good greif!

The ride itself was for the most part easier then the previous time I rode in Cycle for Life. There were a few good size hills, which were mostly around the lake and the rest were rolling hills. During the first 18 miles had a few what-the-heck-am-I-doing thoughts but felt good overall. However, the last 10-miles or so were excruciatingly long. I thought we would NEVER get to the finish.

Since we rode with my hubby's side of the family (sister, mother and father in-laws) they all would "check in" to see how I was holding up. Towards the end, last 2 miles or so, we could physically see the winery where the finish line was and I seriously felt like giving up. I was tired, my legs were rubbery, I was having a very difficult time keeping my breathing rhythmic and I was just plan done. Those last two miles felt like eternity. The worst part was the finish was just at the top of a hill. A huge hill.

But we did. I did. I'm so proud of us ALL. I'm so thankful for those in my life who support me and push me to reach new heights and not let this disease dictate what I can and can't do. I rode for all those who are struggling, those who have lost the battle and for those who gaining new strength every day.

What a ride!


Tuesday, July 23, 2013

Workout Update #4 & #5

The last training update I gave was for weeks #2 & #3, which week #3 was a difficult week to get thru.  You can read why here.

Week #4 was SO much easier. I'm not certain if it was because of how much I struggled the previous week or if it was because week #4 was a recovery week. Recovery weeks are designed to maintain what you've built up to but not push for further gain. In essence, you sort of stay right where you were with the hopes of what was once hard is now easier and allow your body time to adjust and heal. For week #4's Saturday run I opted to ride my bike 8.5 miles to the park to play with my niece and nephew instead. I'm glad I did because it didn't feel like training. I was simply using a different method of transportation to go see some cute kiddos. I've said this before and I'll say it again, training is 90% mental and 10% muscle. The bike ride was the perfect mental distraction yet it was quit strenuous.

A little r&r on the marry-go-round was the perfect reward for all that biking!

Week #5 was also fairly easy. No real hiccups. In fact, I added yet another element of jogging/lunging a nasty hill on Monday. The hill is nearly a little over a quarter mile long with an elevation gain of approximately 500ft. My goal was to go down and up 3x, I made it 2x because my calf muscles were screaming in pain. but after doing lots of stretching and rolling my muscles with a foam roll Tuesday's run (run 20/walk 2/run 20) was a piece of cake, and Thursday's run (run 25 min) didn't even feel like a run.

I guess I'm making advancements slowly. I was beginning to get frustrated because week #3 really had me feeling like I was in terrible shape and that I wasn't making an improvements. But its in those really hard weeks when you don't give up that you make the most impact. It makes what used to seem hard actually easy or no big deal.

This week I'm feeling accomplished and pleased with my overall training. I look forward to next weeks workouts and the CF Cycle for Life.


Friday, July 12, 2013

Cycle for Life

Two years ago I signed up for what I thought was going to be a fun and easy bike ride in support of the CF Foundation. What I didn't know because I didn't check was how much uphill biking was involved. The day of the bike ride I was so excited. We got all dressed up in bike appropriate gear, loaded up our bikes and headed to the starting location. We got signed in, got our bibs and were ready to rock and roll.....err pedal.

It was B, my mother-in-law and I. We started off at a comfortable cruising pace and were enjoying each others company and the beautiful scenic route. Until the first hill came. I saw it as we approached it and immediately thought that there is NO way I was gonna be able to pedal my bike up this hill. I got as fast of a start as I could muster and made it. I was huffing and puffing and took a minute breather at the top but I had made it. We again causally cruised down the road, by this time the more experience riders were no where in sight. But I didn't start the bike ride with a predetermined finishing time.

Then the second hill came and I quickly found myself walking my bike up the hill. Every so often I would stop to catch my breath and cough. But again, I had made it to the top. I mean, walking uphill is a good workout too.

Then the third hill and fourth and fifth and to-many-to-count came in rolling succession it felt like. I walk all of them and felt so defeated. At one point I actually  wanted to cry. By the time we crossed the finish line I was spent. But I was also proud for not giving up. Sure I walked the hills but that's not giving up that's just changing it up and putting myself in position to finish. While I didn't beat any world records, I finished on my own accord, no one helped me.

Well, on July 28th I'm gonna do it all over again! I'm super excited and I hope to be able to ride up at least a few more hills than the last one. I'm sure I'll still walk a few but I'm okay with that. This year I'm prepared and know that walking isn't forfeiting. I also feel as though I'm over all in much better shape than I was the first go-around.

It will be an adventure for sure. This years route............

If you'd like to make a donation to our team to further advances in finding a cure you may do so here:

I'll update you all on how I fared this year.


Sunday, July 7, 2013

Birthday Adventure and Training Update

While I've committed to updating you on each week's training. I have already sort of fallen off the wagon. Last week didn't get an update because I was having too much fun celebrating my birthday with some awesome friends.

After much thought I decided to do something I've never done before and do it with friends. A friend had said that for your birthday they went Zip Lining in Warrenton, Oregon. After that, I knew this would be just the right adventure to celebrate turning 31.

So, we got started inviting some friends. Sadly, some couldn't make it, kind of a bummer. We booked the tour and then the hotel to stay in Seaside, Oregon. Being that my birthday falls in the period of time when the weather in Oregon isn't always in summer bloom yet still be stuck in the spring rain I was nervous that we'd be zipping in the freezing pouring rain.

The Oregon coast is temperamental when it comes to weather. You never know if its gonna be sunny with 80+ degrees or overcast with rain. This trip was gorgeous. It was hot not warm but HOT.  This adventure was something none of us had done before and we were so excited.

Once we got to the zip place we were outfitted in the safety gear and given a helmet that is labeled. They gave me "birthday girl" and appropriately so. B had "scarecrow", and the lovely couple who adventured with us were "honey badger" and "sugar". Quite comical.

I was totally completely beyond freaked out once I saw how high these zip lines are and that they went over water. But after the first zip (which they labeled the "bunny slope") I was so confident.

Little did I know that my hubby and friends had secretly asked the guides to "dunk" me thru the water on one of the low lying zip lines. Thank-goodness it was scorching outside because I was soaked. 

The views of the coastal line were gorgeous from the top of the platforms. The sky was clear blue and you could see for miles. B and I enjoyed experiencing yet another adventure together.

These two are like children when left to their own. Boys will be boys and us girls sun-bathed while the getting was good.

Bottom line, you should try it, if your a thrill seeker and not afraid of heights. It's fun and exhilarating.


Week #2:
Training was fairly easy. No real hiccups or obstacles and the amount of time running seemed rather fluid. Its hard to describe but it felt as though running was second nature and that my body was made for it.

Week #3:
This week was a far cry from week #2. It was hard. I was challenged both mentally and physically. Although I would say this week was more mental than physical. I struggled with the hardest part of exercise of any kind; putting on my shoes. Each training day I kept telling myself things like "I'll go in 30 minutes" or "just one more hour then I HAVE to run" or "I can run tomorrow early in the morning since its already so hot".......

Once I got running I kept peeking at my watch, which makes it feels like time is moving soooooooo slow. I'd feel as though I'd been running for 5 minutes only to find out 2 minutes had passed. It was such a mental battle to keep putting one foot in front of the other and to not look at the watch.

The schedule also ramps up the amount of time running and grossly decreases walking time. I also wonder how much stress I carried thru my runs last week because of the mental battle. I always try to pay attention to how tense my shoulders and arms are while running. Which I don't think I did a good enough job of since I was too obsessed with the watch. Today, I feel it.

I'm glad this last week is behind me and I'm preparing to make this week's workouts less mental. I'm also thrilled its a recovery workout week.


Thursday, June 27, 2013

Thankful Thursday: Sweat

This is what it takes and I'm thankful I can get down and get sweaty!! Getting in shape is not glamorous work.

Today I'm thankful I can push myself hard enough to sweat like a champion.

I'm telling you, this 10K better watch out.


Saturday, June 22, 2013

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!


Thursday, June 20, 2013

Guest Post: Molly Clarke on SSI & SSDI

In light of the recently proposed changes to the social security disabilities criteria for lung diseases and thus CF, I welcomed Molly's words in hopes to gather more information for myself and hopefully allow my readers to gain more knowledge. I've personally gone thru the process of qualifying for SSI and SSDI, so I understand how overwhelming the process the can seem. Having someone you know by name during the process rather than whomever ends up on the other end of the phone call can make this process slightly less daunting.

Below is Molly's contribution to Illness Inspired Words and the first guest blogger post to date!! Find out what Molly has to say.......

Receiving Disability Benefits When Living With Cystic Fibrosis

Cystic fibrosis is often diagnosed at an early age and, although it affects children, symptoms typically worsen over time and cause more severe impairment later on in life. As your cystic fibrosis progresses, you may find that you are no longer able to work. At that point, lack of income and discontinued health insurance may cause significant financial stress.

The Social Security Administration (SSA) recognizes that certain health conditions and disabilities make it impossible for people to continue to work. For this reason, the SSA offers Social Security Disability benefits to provide financial support to sick or disabled individuals who are unable to earn a living.

If you are interested in learning more about Social Security Disability benefits, the following article will give you a brief overview of the system and will provide you with a basic understanding of everything you need to begin the application process.

Social Security Disability Benefit Programs
The Social Security Administration (SSA) provides two different types of disability assistance. The first type is called Social Security Disability Insurance—or SSDI. SSDI is funded by Social Security income taxes that are paid into the system by workers across the country. Eligibility for SSDI is determined by an applicant’s work history. The SSA assigns a certain number of “work credits” to each applicant to determine whether or not they qualify for SSDI. Learn more about SSDI and work credits here:

The second type of disability assistance is known as Supplemental Security Income (SSI). This program provides financial assistance to elderly or disabled individuals who have very little income.  To qualify for SSI, only an individual’s finances are analyzed.  Young applicants or applicants who have little work history often turn to SSI if they do not have enough work credits to qualify for SSDI. Learn more about qualifying for SSI here:

It is important to note that in some circumstances, applicants may be eligible to receive both SSI and SSDI.

Qualifying for Disability Benefits
In addition to meeting the technical requirements mentioned above, you must also be able to prove to the SSA that your cystic fibrosis symptoms are severe enough to keep you from working.

To determine whether or not an applicant medically qualifies for disability benefits, the SSA consults an official manual of disabling conditions known as the blue book. 

Cystic fibrosis is listed is listed under section 3.04 of the blue book. According to this listing, you must meet the following criteria in order to qualify for benefits from either program:

·       Trouble Breathing – Breathing tests must show that you are experiencing significant difficulty breathing for someone of your height.

·       Lung Problems – Cystic fibrosis has caused you to repeatedly cough up blood, or has resulted in recurrent episodes of pneumonia, bronchitis, or respiratory failure that require medical treatment.

·       Chronic Infections – At least every six months you experience lung infections that require antibacterial medical attention.

If you do not meet any of the specific qualifications listed in the Blue Book, you can still be approved for disability benefits if you provide medical evidence that demonstrates that cystic fibrosis significantly limits your ability to function.

The Application Process
To begin the application process you can visit the SSA’s website or make an appointment to fill out the necessary paperwork in person at your local Social Security office.

It is important to note that you will need to submit many different types of records along with your application. These records include accurate financial information, a history of your treatments and hospitalizations, lab reports and examination findings, letters of recommendation from your physicians, as well as any other relevant documentation. The more thorough and prepared you are before submitting your application, the higher your chances will be of receiving an approval.

Even if you meet all of the medical and technical eligibility criteria, the application process can be a long and challenging experience. In fact, the SSA rejects the majority of the applications they receive each year.  If you are feeling overwhelmed or intimidated by the application procedures, it may be in your best interest to work with a qualified Social Security Disability attorney. He or she will have a thorough understanding of the application process and will make sure that your application contains all the necessary information.

Remember, even if your initial application is denied, it is important that you don’t give up on your pursuit of disability benefits. Although the application process is often difficult, Social Security Disability benefits exist to help you. Once you are awarded benefits, you will be able to focus on your health, rather than your financial struggles.

For more information about Social Security Disability benefits, visit Social Security Disability Help or contact Molly Clarke at


I always welcome questions and will offer as much advise from my personal journey with SSI & SSDI as I can, but for legal or technical questions you really should reach out to Molly. She'll know how to steer you in the right direction to get the help you need.


Friday, June 14, 2013

Sleep or the Lack Thereof....

I couldn't be more thankful that its Friday. I've been struggling with sleep lately which is largely why I'm excited for the weekend. No real obligations to be anywhere but church. Its amazing how quickly I run out of gas when I can't sleep. I hear people chatter about how little they sleep but yet still function at a high level. I'm not one of these people. 

About a month ago I did a home version of a sleep study, the results came back as inconclusive, its no wonder the machine they had me "rent" was huge and it had to rest on my chest. I'm a stomach/side sleeper so this was a  no-go for me.  So I'll be going into the sleep lab to redo it. 

B tells me all the time that I snore. In some cases he goes and sleeps in the spare room if he has a long day ahead of him. It was actually B's idea to seek out doing the study. Apparently, people with chronic lung disease have a high risk of having some form of a sleep disorder. This laundry list of secondary and third-endary diseases is ever expanding. Just sayin'

I've come a crossed a hand-full of CF'ers who have also done the sleep study and some of them have been sleeping with oxygen while others sleep with the C-PAP. I'm really hope I don't have to add yet another machine to the mix while I sleep, it already takes me too much time to unhook for a bathroom break in the middle of the night. Geez!

Maybe once this sleep thing is figured I'll have more energy, motivation, and be an overall more balanced person. 


Thursday, June 13, 2013

When the Unthinkable Happens....Are You Prepared?

The one thing I can say without fail is that life is a roller coaster ride. I'm not sure how I "feel" about that. 

May was National CF Awareness Month, for which I hope I was able to give you different information then what most typically read and/or hear about CF. You know, to broaden your knowledge of what CF is and how it affects those of us with it.

However, as May was approaching an end a tragic townhouse fire took the lives of a husband and 11 yr old boy. They were our neighbors and only 4 town-homes from us. Needless to say, it shook B and I up BIG TIME. 

The town-home is now boarded up with crime scene yellow tape around it. We drive past it multiple times a day. We can see it from our front yard. It's a constant reminder of what occurred early that Thursday morning.

We, took away from this tragedy that you never know what will happen in this life. Much of the time I fret about what my future may not hold due to CF but it very well could end up being something completely unexpected that interrupts my future plans. 

We, also took time to reflect on what our personal safety plans are. Do we have a fire escape route, do we have the necessary tools to successfully implement the escape route, do we know how to work the tools? etc. My answer, sadly, is no. We live in a 3-story town home in-where the bedrooms are on the third floor. We have no ladder, no fire extinguisher, and no planned routes. All we have is working smoke detectors. So did our neighbors.


Look, I'm not talking about getting all crazy and prepping for the end of the world sort of stuff. But let's be realistic. In the event of even a small kitchen fire we are simply not prepared. We don't have fire extinguisher. Do you? Do you know how to discharge it? Do you know when to replace it?

In addition, to adding things like a ladder in our bedroom on the third floor and a fire extinguisher, we have to take into account my medical needs. Should a house fire or some other emergency situation arise that requires us to evacuate our home. I'm connected to a feeding tube machine at night. I can't simply hop out of bed and flea. This will need to be disconnected or worst case be cut before I can flea. Will B or I be of sound mind to remember this? Should I keep a small pair of scissors with my feeding tube supplies on my nightstand? 

Another factor particularly with smoke is my lungs. I don't have the normal capacity that say; B will have to withstand smoke inhalation. The most likely scenario will be that I'm unconscious from it long before he will. This means he'll have to know how to carry me down a ladder if he is able. Have we practiced him carrying something around my weight down a ladder, even a small one? Nope. We have pets, which would be last on our list to rescue, but nonetheless if its possible do we know how? Do I know how to help B in case he's unconscious as I can't lift him even with his help? 

I guess my point is that we all were taught a few things about fire safety in school. There's a reason. House fires are actually very common. Not all are tragic but some are. We are not even close to being prepared.

We're taking steps to change this. A sweet foldable ladder is on its way in the mail and three fire extinguishers are also in route. We've discussed a few options for escaping but still need to finalize and probably write it down so we can review every once in awhile.

I encourage everyone to take a good hard look at their safety plans and tools, especially if you have children. Just because you know doesn't mean they know or have been taught how. Practice. Practice. 

Be safe and have a plan!


Wednesday, May 22, 2013

May is National CF Awareness Month: Fun Fact #5

I've added in a bit of history on CF. While this is an over simplification of the steps to discovery of Cystic Fibrosis I believe is represents a good idea of how far we've come with breaking down CF to its core in the last 75 years with the bulk of discovery happening in the late 1980's.

Cystic Fibrosis is often called Mucovicidosis, especially in other parts of the world. This refers to the thick sticky mucus produced by the exocrine glands of people with CF. 

Its been said that CF has been known for a long time. In northern European folklore there are stories of mothers licking their babies foreheads to see if they were salty; if they were that meant the child had a disease that we know today as Cystic Fibrosis.

No one person discovered Mucovicidosis  However, the name Cystic Fibrosis was established in 1938 by Dr. Dorothy Anderson, a pathologist in New York City. She described the changes in the pancreas as cystic or fluid-filled and fibrotic or scarred. Shortly after CF was recognized as a generalized disease in 1943.

Sometime in the 1940's scientists realized that the ductual system in the body were affected. In 1946, after following families with people that had the disease, it was confirmed that the disease was caused by an autosomal (any chromosome other than the sex chromosomes) recessive gene. In the 1980's it was discovered that the malfunction of the epithelial tissue (a sheet of cells that separates different compartments of the body) caused the organs to not work normally. 

Scientists started looking for the cause of this salty killer in the 1980's. With a lot of work and dedication scientists isolated the affected gene and found the mutation in the gene that caused the disease in the 1990's. Because the protein produced by the gene influenced chloride movement they named the protein cystic fibrosis transmember regulator (CFTR). In addition they found the DNA abnormality on the long arm of the chromosome 7, a deletion of three nucleotides that causes the gene to lack the amino acid phenylalanine at position 508.

Today, we know that the protein serves as a channel for chloride ions to enter and exit the cell. A faulty or damaged gene produces an incorrect protein that blocks the transport of the chloride ions; this is what causes the symptoms CF patients experience.

Most research is focused around correcting the cells ability to allow chloride ions to enter and exit. The drug Kalydeco which hit the market last year is targeting just that for a small population of CF community. Because Kalydeco has been so successful they are working on pairing it with another drug to hopefully treat those with the Delta F508 mutation which represents nearly 70% of all CF patients.


Wednesday, May 15, 2013

May is National CF Awareness Month: Fun Fact #4

CF is for the most an invisible disease. Unless you can physically see the scars from Port-A-Caths, G-tubes, etc. But even then you wouldn't be able to identify someone with CF. However, there are a few features that many CF patients end up acquiring. The most distinguishable features come from having lung disease. Finger clubbing and a barrel-chested appearance are two of the more common physical deformities that occur.

Finger and toe clubbing is yet another characteristic of chronic lung diseases like Cystic Fibrosis.

Its well documented that CF affects many parts of the such like the lungs and pancreas. CF also results in distinctive effects on the fingers of many CF patients in whats known as clubbing. 

Patients who have pulmonary diseases, including CF, commonly experience chronic lung infections, and have a higher risk of experiencing finger clubbing. Some develop a mild form of clubbing while others have very noticeable clubbing.

In addition, to finger clubbing a CF patient can develop a barrel-chested appearance. The barrel-chested appearance comes from the lung cavity being hyper-inflated. Because of the nature of CF with frequent lung infections the airways become enlarged or obstructed causing the barrel like appearance. The severity of the barrel-chest appearance varies from patient to patient. 

The barrel-chest appearance in patients with chronic lung disease forms over time. Generally, as the lung disease progresses and air becomes trapped causing patients begin to acquire the barrel-chested appearance.

It should be noted that not ALL CF patients have these deformities. I don't have any noticeable clubbing but I do have a slight barrel-chested appearance that is only noticeable without clothing. 


Tuesday, May 14, 2013

Mother's Day

CF awareness is briefly interrupted to recap Mother's Day.

Last year I wrote a somber post about how I was feeling about Mother's Day. This year I'm feeling different. Different in ways that I'm not yet ready to vocalize to the world but nonetheless I had a fabulous weekend visiting with my mom.

Since mom had to trek back to Bend (Central Oregon) on Sunday we had a family dinner on Saturday. It was a gorgeous day in the PacNW. So we took full advantage by dining outside.

My sister-in-law brought bubble guns for my niece and nephew to play with. Genius idea to keep the kids occupied while waiting for our meal.

I have a step sister whom B loves to pester.

But the dinner was really to celebrate my mom. To say thank you for all the sacrifices and to show her a good time with all of us!

A mom to a very sick child is hard work. Its emotional. She had no idea if I would live to see this phase of life. While she hoped she truly didn't know. So, I think for her mother's day is special, she still has both her children to enjoy life with. My brother made her an "ammy" (grandma), I will turn 31 next month, my brother and I are married and following our dreams. She did a pretty good job!

Love you mom!


Monday, May 6, 2013

May is National CF Awareness Month: Fun Fact #3

Cystic Fibrosis is an extremely expensive disease. It's hard to pinpoint exactly how much it costs to treat CF for a number of reasons, disease severity, insurance gaps, patient compliance, etc.

However, the median cost per year is $40,000 pre transplant. While approximately 95-99% of the CF population has access to some sort of healthcare coverage many have reported skipping medications or reducing usage in order to cut costs.

As reported by the CF Pharmacy my medication costs per month:

Azithromycin 500mg- $466.28

Humulin R- $53.16
Humulin N- $53.16
One Touch Test Strips- $123.60

Zenpep 20,000- $435.88

Proairt HFA Inhaler- $53.42

Cayston $6,786.02
Sodium Chloride 7%- $61.94
Pulmozyme- $2,657.41
TOBI- $8,012.17

Boost High Protein- $56.88

AquaADEKS softgels- $41.95

TOTAL per month: $18,801.87*

I am so thankful that I have insurance. Most the above referenced medications are a $40 co-pay, which for me puts my total at approximately $480* per month.

Currently I'm a recipient of Social Security Disability which pays for all my medications, co-pays, and other needs related to my healthcare. At the end of each month I have $108 leftover for food, gas, rent, clothes, etc.

It's no wonder why CF patients continue to live with family well into adulthood or in my case I have a spouse who busts his hump each day to provide.

CF care only gets more expensive with age and with the progression of the disease. I am in a good place. I'm healthy (for CF).

*This total does NOT include things like insulin needles, Lantus (insulin), additional vitamins, IV antibiotics, home health care, doctors appointments, feeding tube supplies, the VEST, hospitilazations, etc.


Friday, May 3, 2013

May is National CF Awareness Month: Fun Fact #2

I'm finding so much inspiration and motivation from my CF community this month, so much so I braved making a video for you!

To donate to this years Great Strides event:

To learn more about Orphan Diseases: 


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