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'

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'

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'

No More Excuses

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

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

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

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

NO MORE EXCUSES.

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

~Doodlin'

Setting New Goals

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

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

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

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

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

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

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

~Doodlin'

Striving to Live in The Moment

It's been a marvelous week. Truly.

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

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

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

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

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

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

~Doodlin'

Body Image...A Few Words

Over the past few months I have noticed that a couple of my favorite bloggers have written about their body image in relation to weight gain/loss. On so many levels I can relate to their struggle with this love /hate relationship with weight as most women in America can. The hardest part is deciding to be healthy (have a healthy BMI) or being accepted by societies standards. This seems like an obvious choice, but it is? Not. Even. Close.

Prior to having my g-tube placed I was commented on all the time about how lucky I was to be thin. Many oggled over my ability to wear a size zero at the age of 25. Yet, at that time I still felt as thought I could slim up a bit, exercise to flatten my stomach a bit more, etc. Fast forward to nearly 5 years of having a g-tube and at a healthy BMI of 21-22, I look back at photos of myself and am dismayed that anyone including myself thought I looked healthy. My hip bones, shoulder bones, elbows, knees all protruded and you could easily count my ribs. Healthy? Nope. It took a huge dive in my health, like emergency intervention, to get me to agree to the g-tube.

Let me be very clear. There are just as many health issues that stem from starvation, malnutrition and being grossly underweight as there is with being overweight or obese.

I am now a size 4-6 and fluctuate between 124-128lbs. I am still in the process of accepting my new body. I have days that I feel fat. I have days that I feel perfect. I have days that I don't even think about it. The best thing I have done to help my perception of my body image is to exercise regularly. I feel happier about the weight gain. I understand on a different level that my body needs fuel and a healthy percentage of fat to muscle ratio to function the way God intended.

When I am at a healthy weight I have more energy which means I can engage in my own life more. I have longer lapses between IV's and hospitalizations. My lung function has increased and become more stable. I can run more than a mile because my body has the physical means to do so because of the proper nutrition. ALL is good!!

I do know one thing, I never want to go back to being a size zero. I never want to go back to feeling absolutely exhausted all the time. I never want to feel as though my body is largely depleted of everything.

Such a tricky topic. Finding the happy spot for each of us entails a different journey for each. For me, finding and focusing on things that bring me joy and are healthy have helped tremendously. Wanting to be active in my life as a new bride was a large piece for me. Then, I added running and started to experience all the ways running has helped me transform my perception about my body. Then, over time all the wonderful health benefits I started to reap; better lung function and better diabetes control to name a few.

I am now in a happy place. There are times when the jeans fit a bit snug and there are times when the jeans are a bit looser, for me this is normal as my body is not one size day after day. Just like the seasons change so does my body. I have found a happy place with this and am willing to work with it. I am sure as I age, I will come to forks in the road that force me through the process of reaccepting my bodies lot in life. I hope that I can do so with grace and dignity and shear appreciation for all the incredible changes my body has sustained over the years and still functions.

I hope we all can someday find our own happy place. Our own form of acceptance. We are all beautifully made and made for a purpose much more important than what the scale or society tells us.

~Doodlin'

It's All About the Routine

My struggle with CFRD (Cystic Fibrosis Related Diabetes) is no secret to those who know me and read this blog. I struggle with diabetes more than I do with my CF. There are few factors that aid in the struggle. I wasn't diagnosed with CFRD until I was 13 or so, whereas I haven't known life without CF. Another aspect that makes diabetes a struggle is that it requires multiple injections a day and numerous finger pokes whereas their is no poking on a daily bases to treat my CF.

I humbly admit that I was far from the model diabetes patient. For many years I did the bare minimum and tried to forget about it. Something changed about 9 years ago, I started to care. I started to see the importance of getting this aspect of my care under control. I began with baby steps so that I didn't overwhelm myself and throwing in the towel. I started to by committing to checking my glucose levels 3 times a day. As this became a routine occurrence each day I added something else. I kept building on this model and I started to see and feel results.

I am a learn the hard way kinda gal. I have to feel the impact before action is taken. It simply isn't enough to hear the statistics or even have the unpleasant symptoms described to me. I have to be affected to change course.

Fast forward to present day me. For the most part I have this diabetes thing under control. I have fit it into my life and it feels rather natural. I have a routine. Routine keeps me healthy. Routine keeps me on track. Because of routine I have learned what bumps me off course and what it takes to get back on course.

Of course, I could do even better. Which I continue to evaluate and make changes as I can handle them.  I have learned a lot from having diabetes. I have learned that diabetes truly requires one to be on top of their care for the immediate present while many of the treatments for CF are to help prevent damage in the future. Meaning, if my blood sugar drops too low I immediately feel the symptoms or worse will need to be rushed to the emergency room, but with CF if I skip a treatment there are no immediate symptoms.

This is why for me having a routine is essential. My routine helps me always know what's going on with my diabetes while being proactive with my CF. My hope is that I can keep my body in as good as healthy at this very moment as well as in the future so that I can be present in life with my family and friends.

A motivating saying I have posted to read every day is ....."Doing all my meds is NOT submission to my CF but rather FREEDOM from it." This is easily transferrable for any illness we struggle with. A routine allows this statement to be true.

Do you thrive in a routine?

~Doodlin'

Secret to Finishing a 5k: Playing the Winning Card

As April 1st quickly, a bit too quickly I might add, rolls upon us so does my goal of running another 5k. The Race for the Roses 5K is fairly flat and straight. The flat part I am beyond grateful for but the straight part has me a bit uneasy.

When running in a straight line or path its really easy to see just how slow your moving. You can see each and every mental marker. The way I run is that I see something, like a stop sign and think to myself, okay just make it to that, then once I have accomplished getting to the stop sign (or whatever) I pick a new mental marker. With each marker I pass I gain confidence and stamina. But the straight line leaves you watching that marker for what seems like all eternity. Thus leaving you to play the mind vs willpower game. Which to be honest is not a game I usually win. However, I have a winning card up my sleeve for just this kind of emergency.

My card is B, who will be running in front of me and let me just say, a 6'2" man does not naturally run at the same pace as a 5'4" gal. His stride is much larger than mine, which places is pace far ahead of me and when he slows down his pace it throws off his mental game, allows more wear & tear on the joints and is just as difficult as keeping a pace that is too fast. He has graciously obliged to run the slow pace because he loves me and because he knows how difficult this goal really is for me. The plan is that he will be running just far enough ahead of me for me to watch his feet. To see the momentum of forward motion, to allow my eyes to feed my brain the motion of running so that willpower to simply stop and walk does not take over.

I have been training so I don't expect to be using my winning card until mile 2.5-3. I have had to make a few changes to my training schedule because of not feeling well, aching joints (arthritis) and the weather. So I haven't gotten to the point in my training that I had hoped. I am not going to let this drag me down though. I am going to run the race and I don't care what my time is. My goal is to simply run the entire 5k.

I have always told myself that there is no failure in making adjustments to my training schedule. It would be a failure to completely give up; which I don't do.

Here's to hoping my secret to finishing is playing my winning card, after all, the card is pretty darn amazing!

~Doodlin'

Bag-O-Motivation

December and now January have proved to be incredibly trying months from many different angles of life. Surprisingly my health is not one of those aspects. So, today, when I got a large bag with my name on it that instructed me to open one gift after doing my nebulizer (breathing) treatments each day as motivation, you can image my joy. In fact the joy was so overwhelming that it overflowed from me like a waterfall.

You know I get many many words of encouragement, which I love and will always need from time to time. But this gift was so thought out and so perfect as a jump start to gaining motivation or the reward factor of changing a schedule to accommodate the treatments. Even though I am almost 30 years old, I still need to be rewarded. And let me tell you its so much more pressure (positive) to earn a reward from someone else, rather than me giving myself the reward. I feel obligated to follow thru on my end of the bargain you'd say.

My first gift was a lollipop and a little printed "you can do it" message. While I was doing my treatment tonight, I thought about all the parents who attempt tirelessly to get their children to sit still and do their treatments how great something like this would be. A simple gift to pull from a bag if one does their medications is marvelous. It could be a sticker, piece of candy, a piece of change to put in their piggy banks (dime or a quarter) or whatever your child would enjoy. I also think that this idea works for any adult who maybe going thru a rough time.

Do you know someone who could use a few days of encouragement or motivation? Maybe give this a try it sure warmed my heart and put a fire under my backside.

Thank you Nancy for this wonderful gift.

~Doodlin'