Thursday, January 30, 2014

What to say?!

CF is such a funny disease. Ok, not really humorous but fascinating. Its the only disease that affects and attacks every single part of the body. Lungs, pancreas, kidneys, blood sugar, sinuses, heart, reproductive system, vitamin levels, and disfigures the fingers and toes.

You know the saying "when it rains it pours?" That saying is perfect for CF, because if one thing happens it creates a cascade affect. CF isn't like most. Once you think you know whats going on and feel as though you've got a grip its all taken right out from under your fingertips. We are constantly playing a guessing game. Dealing with and sorting through a million layers of issues.

It's felt like its pouring over here for some time now. The worst part is the feeling of being alone or that no one really understands the struggle. It seems that all anyone can say is "I am sorry" or "I know exactly how you feel" which if I'm honest is complete crap. How could you?  I get that they're trying to be empathic but the reality is that you don't know and by saying you do minimizes what I'm struggling with.

I get that its difficult to find the right words to say to someone like me. Sometimes saying nothing is SO much more powerful than a book full of words. Having someone to just listen to me, without giving advice or placing judgement, is just what's needed. I can't tell you how many times in my 31 years I've heard someone tell me "it'll all work out" or "just stay positive"; as if I'm not already doing everything I know to remain positive.

The best thing you can do to support me is take a step back, breathe and listen. I just need someone to hear me, to lend an ear and possibly a shoulder.

If you have someone close to you who is dealing with some hard medical stuff below are a few things to avoid saying.

But you don't look sick: People expect sick people to look a certain way, but 96% of chronic illness and disabilities are invisible.

You need to think positive: Um, this is just crappy. If positive thinking would cure us, we wouldn't spend billions on toxic meds and doctors. This also indicates that it's our fault we're sick because we just aren't thinking positively enough.

Get well soon: HA!

You're just depressed: Depression cannot be described as 'just depressed'; its much more than that. It's the worst feeling in the world.

You just need to take you mind off being sick: That's just not gonna happen and not helpful. The disease is apart of you. Keeping my mind on my illness is what is keeping me alive. I've got medications to remember, doctors appointments to attend, etc. It's an ingrained part of me.

You need to be strong: The strongest person in the world will have bad days. We all do, because we're human and we need to let our feeling out.

Remember, if your struggling for words you don't have to speak. We humans have many levels of communicating.  A loving smile. A soft but grounded hug. Lending our ears or shoulders.

I'm looking forward to dry soil.


Wednesday, January 22, 2014

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.


Tuesday, January 14, 2014

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.


Friday, January 10, 2014

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!


Friday, January 3, 2014

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!


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