A Bold New World....

Managing a chronic illness is beyond time consuming. It takes every minute of every day consciously engaging to simply stay in step with a chronic illness. However, I'm always learning new ways to simply and to reduce time spend.

I was a later user of an iphone or of any phone that allowed the use of apps. I'm finding that its a bold new world, with so many options in terms of electronic organization. I've found a few apps that I really love but one in particular has really helped me!

MyFitnessPal, has been life changing. Seriously. Having to track caloric intake plus counting carbs for insulin dosage can be daunting.The App allows you to enter what your eating or scan the barcode from the huge database it also remembers/stores your foods that you enter. The best part is that as you add food it allows you too see what your calorie, carb, sugar, fat, etc counts are. It also allows for exercise to be entered. All this is based on what you've entered as your body type, exercise level, and work type (sedinary, active) or you can over-write the whole thing to enter what calorie level you want. For me, I over-wrote it as 3000+ was not a preset setting :-)

For someone who must achieve 3000+ calories a day plus give 1 unit of insulin for every 15 carbs consumed, this apps makes it so easy and simple to track. The very BEST part is that I can take this information to my doctor. They can easily access what I've been eating and if based on what I'm eating I'm getting enough insulin.

Anyways, technology is pretty cool and in this case it's helped me simplify. In addition, I feel like I'm more accurate in my calorie reporting and carb counting.

Do you have a favorite app to help simplify your health? I'd love to hear about it.

~Doodlin'

A Girl, Her Thoughts and a 1000-Piece Puzzle

Ever thought a problem or thought to death? I mean, have you ever rolled something around in your head to the point of its near death?! One of my WORST habits is doing just that. I can take almost anything and trap it in my mind; roll it around, shake it up, twist it up until I've killed the very thought or at least distorted it to an unrecognizable mound of nothing or worst until its a mountain so high the top is invisible.

I'm an over-anaylizer. Not really sure how this came to fruition or its origins but sadly I am an over-thinker. If I were to guess, I would assume it has developed overtime; day by day, year by year- from living with CF. Having to be incredibly hyper vigilant about nearly everything from cleanliness to medication names, dose, time, frequency, etc along with having to critically think each step of treatment, major life decisions and more can and does place me in a frame of mind to always be fully engaged. To always be thinking and analyzing.

Occasionally my mind wonders to, what I call, the dark side. A place in my mind that is consumed with death. My death. A place where nothing I do can or will save me from the darkness that is CF. This is where my thoughts get stuck and become distorted. I try desperately not to stay in that place long. A second is too long.

As of late, the CF community has lost far too many in a short span of time. A rush of emotions and thoughts comes with each loss. Being a part of the this incredibly supportive community is a bit of a double edged sword. So much hope yet so much grief. So many bright smiles yet so much sadness. Its in these times that slipping into the darkness is easy. Its hard to see the sunlight when the shadows are close behind.

Over the years I've tried different avenues to help divert my thoughts to less critical or morbid things in hopes to give myself reprieve. As of late I'm finding that a 1000+ piece puzzle can be just the perfect distraction. I find that I go between "thinking" and hunting for that perfect puzzle piece. I like the distraction. I like that I can walk away from the puzzle and come back at anytime. I like that its sort of a memory game, remembering what shape, color and the overall puzzle picture keeps my thoughts in the present. It keeps them from staying in the darkness too long.

CF feels a lot like a puzzle. We know what the picture is. We just need all the pieces to align and match up perfectly to create a beautiful masterpiece. Just like with a real puzzle some pieces look like just the right fit but alas it wasn't, you move on to another piece to see if its the perfect fit and continue on this way until the right piece slips effortlessly into place, getting you one piece closer.

I hope beyond hope that the puzzle is finished within my lifetime. That we can look upon the giant picture to gaze upon all who fought and if one were to look closely that would see the each piece is that of a CF warrior and when viewed abstractly they also see a cure.

Just me. My thoughts. 1000+ puzzle.

~Doodlin'

Back in the Saddle….sort of!

Last week, despite feeling a bit crummy, I got swept away by all the "new year's resolution" workout pics on varies social media sites. I know… I'm not immune to peer pressure! I decided to get back in the saddle, er, lace up my running shoes. I decided to run 1-mile every other day for a total of three days. 

Wow! The first run back was ugly. I mean ugly. Its amazing to me how quickly we loose our fitness level. Sure, I've been doing yoga and weights but my goodness I was not prepared for what a slap in the face 3-months of non-running will do to ones fitness level.

I hacked, gasped and down right felt like I was never gonna catch my breath. But I did….eventually. The sweat poured off me despite the fact that the high that day was only 43 degrees. Down right ugly I tell you! I did get three days of 1-mile each under my feet. I am VERY eager to get back to where I left off and feel good after 5-6 miles, even though my fitness isn't to that level I can feel my muscles wanting it. 

But it might take longer that I really want. I ended up back in the doctors office Wednesday afternoon. I just feel crummy. I'm extremely tired most of the time, a slight increase in cough and night fevers. We settled on doing 15 days of oral antibiotics with a few days of rest.

I feel like its one foot forward and two steps back but I'm determined to get my running mojo back.

Tanner and I completing our first 1-miler! He's got WAY more stamina than I and he alone is responsible for our time of just under 10 minutes a mile. He was totally pulling me along and urging me forward to greatness. Such a good buddy!

~Doodlin'

A New Year

Its kind of refreshing to start a new year. Sort of like going to bed after a hard day and waking up to a new sunrise full of new opportunities. Unlike so many, I'm not a new years resolution kinda gal. In the past, I attempted this form of generating change but never succeed. In many ways it felt like I was setting myself up to fail. My experiences have taught me that change comes incrementally and over-time.

I so admire those who set robust goals and make it happen. I see you all at the starting line and the second the gun shot is heard signalling the race into motion you hit the pavement with all you've got- its inspiring. But I peter out. I can't hold the pace for the distance especially when the pace is new and the distance is unknown. I need to start off walking and gradually increase the pace as I conquer each lap.

This year will be better than last. I've laid a good foundation and will continue to build upon it. That's my goal. To build on what I've got. And if I'm honest, It's all I can do.

Whatever your hopes, goals, and resolutions are for 2014, I look forward to embracing this new year with you!

Cheers-



~Doodlin' 

My Mantra in Two Words

Because……

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.

~Doodlin'

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!!!

~Doodlin'

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.

~Doodlin'