Wednesday, February 29, 2012

A Bit Here & A Bit There

CF is in the news people. Some interesting articles below:

Doing Something to Help! This article I just love. She is doing something to help improve the care she and others like her get. I love it because so many times you hear people complain, but rarely do they step up and help change the situation.


Kalydeco and its Expense. Being a patient and knowing exactly how much my medications cost without insurance are is eye opening. It has allowed me to understand why having health insurance is so critical for folks like me, but as you read this article you'll be able to see how much a drug like Kalydeco costs. Let's hope that insurance companies will begin to cover it for those who need it.

As always, thanks for reading!


Sunday, February 26, 2012

Sit-Ups and The Battle Between Lots and Little


Upon setting my goal to run the Race for The Roses (kinda fitting given the name of this blog) 5K on April 1st, I have been following a training schedule. This schedule is different than the one I followed when I was in the beginning stage last year of learning to become a runner and getting my body in shape. For the most part, I have maintained a basic level of fitness, thus requiring an elevated training schedule.

This new schedule incorporates doing sit-ups, lunges, squats, wall-sits and the such to help build the long and short muscles to help prevent common injuries that comes with repetitive running stress to the knees, ankles, pelvis, etc. My issue is the darn sit-ups. I don't have excess belly-fat that is hindering the process but rather my muscles have been severed on both sides from a gal-bladder removal (the old fashion cut-you-wide-open method) and my still functioning g-tube. I can only do 5 sit-ups without my abdomen hurting. I have been searching for modified sit-ups but can't find anything that works. Not sure if I should continue with 5 each day and see if any muscle memory develops or what.

I want to be very clear I don't want to lose weight and am not shooting to develop a flat stomach, I am small enough as it is, hence the g-tube. I want to develop these muscles as it helps tremendously with breathing and posture. I need all the good breathing help I can get to fuel my muscles during exercise.

Any ideas?


In this house we have what we call the lots and little. I need lots of calories and B needs little. This makes meal planning and grocery shopping a challenge. I need in the upwards of 3500-4000 calories per day and B needs the 1500-2000 per day depending on activity level. I get approximately 2500 calories thru the g-tube but I must then supplement the remaining thru my meals and snacks. Its recommended that I use heavy cream, half & half and real butter, etc, etc. Problem is that B ends up on the heavier end of the recommended weight scale for his gender and age, which of course could lead to him developing health issues. NOT GOOD!!!

Ways that I have separated the two needs are things like making plain mash potatoes then adding my supplements separately or when making our superfood shakes I add powdered supplements to my glass. But we need to cut back on the $$$ we spend on food as health care costs are rising. How do we purchase two sets of food; high calorie and low fat without breaking the bank?


Tuesday, February 21, 2012

I'm Back... I Think

Took an unofficial hiatus for a few weeks. Every time I sat down to compose a post the words would elude me, not sure why, so I took it as a sign to step away for a bit.

I honestly don't have a theme or topic for this post, which is typically the only way I write. I develop a draft in my head that is generally very specific at addressing a topic or theme. Maybe I need to step out of that comfort zone and just let the words do as they will. Who knows!?

Today was CF Clinic, thus I spent the better part of a day under the same roof as all my wonderful doctors and nurses. No matter what the outcome of CF Clinic, I am always overjoyed to walk outside and take a deep breath of fresh air. Today's outcome was good. Not great but good.

My weight is stable at around 124 lbs, O2 was 98% on room air, and my PFT's were average. There were no changes made to any of my medications or regimens. Thank goodness! Rather uneventful to be honest.

In reviewing my stats, I came across some that were REALLY awesome ones from back in April 2011. For the life of me I can't remember what I was doing that caused them to be so good. The one thing I do know is that April was around the time I began running, really running.

I have been needing something to kick my behind back into gear. Well, I got it. I need to start training and pushing these raggedy ole lungs. Tomorrow B and I begin our 5K training program to run the Race for the Rose's on April 1st.

Feels good to have a goal again!