Friday, October 28, 2016

Wash, Rinse, Repeat....

Much of the time I feel like I'm on a circular pattern in both health and exercise. Just like with our laundry cycle of wash, rinse, repeat; I, too, feel like my health cycles thus so does my exercise routine. 

It starts to get a tad maddening when you're cruising along, all seems well, you've got a nice routine going and BAM! I get sick or some new development in my health is found, throwing me completely off balance. I quickly find myself having to create a new pattern, a new routine and it takes time to adjust to these types of changes. In fact, I just start to get settled into my new routine or pattern only to be thrown out of balance; repeating the entire cycle over again. 

I notice it the most in my exercise routine/habits/pattern. I guess because I've had CF my entire life I've grown accustom to adjusting my life based on what's happening with my health. But as anyone who exercises regularly can confirm getting back on the wagon after a break or time away is extremely difficult. Its easy to get out of shape but twice as hard to get back into shape.

For me, getting back into shape also requires finding exercises I can do given my new state of health. A good example is that after I developed Pleurisy I was advised not to run, to give my lungs/chest time to fully heal. So, I had to find ways to do just that. I don't think I was very successful at it. I did yoga, lifted weights and tried to get my heart rate up but I just didn't feel the same as when I was able to run or jog. 

Hits like these that are on repeat make it really easy to throw in the towel and no one would blame me; except for me. If I feel like I can be doing better then it doesn't rest well in my heart and soul if I don't make changes to do it better. I convinced that I have just as much control over my health and overall well-being as my doctors and medications. 

After a few months off I made the decision to begin running again. Slowly. My goal is to just run 1 or 2-miles a couple of times a week over the next 4 weeks. It's winter, which means daylight is less and the weather is uncooperative most of the time. So there is no reason to push it. After 4-weeks I'll reevaluate, check in with my CF team and make adjustments as necessary. This is me doing better. This is me saving myself from going crazy. This is me attempting to stop the wash, rinse, repeat cycle that seems to be the trend.


Tuesday, October 11, 2016

Orkambi: 1-Year Update

I can't believe how fast time marches on. As of, Sept 13th I've been on Orkambi for 1-year. I remember thinking I'd never live to see the day that a drug that treated the underlying cause of Cystic Fibrosis would hit the market. However, on Sept 13th, 2015, that much anticipated pink pill hit my hot little hands and I joyfully placed it on my tongue with a big gulp of water - down the hatch it went!

Little did I know just how rough adjusting to this new treatment would be on my body. It was horrific for nearly 3-months. I wanted to throw in the towel a minimum of 5x, thinking this drug just isn't going to work for me; maybe they'll come up with another formulation that my body can tolerate. I was nauseous, had body aches & cramps, and overall felt like I had the flu for three very long grueling months. However, over time it all started to subside. I figured out things that my body needed to accompany this new treatment. For one thing, it's recommended to eat a high fat meal with each dose, this is especially true for me. I actually increased the fat intake to 20-30mg each dose. I also need a full 16oz of water with each dose. That helped with the upset stomach issues. These are still present today. If I don't have either high fat or lots of water I feel off and weird all day long.

So, fast forward to today. I'm feeling really good. I've had a few colds and other CF related issues throughout the year but I've been able to bounce back without the need for IV medications or hospitalization. Bryan and I became foster parents, which brought a different kind of stress to my life, that I am convinced without the aid of Orkambi would have driven me to the hospital.

While I think it has been a wonderful addition to my treatment regime, I don't think it's a miracle drug. Orkambi in combination to all my other therapies continue to allow me to live a fairly good quality of life. I will remain on Orkambi until further notice or something is released that will take its place.

I do think about how it will affect the younger generations. I'm hopeful that when they reach my age they won't be dealing with significant decreases in lung function, pancreatic disease, CF-relataed diabetes, arthritis and all the other things CF affects/does. That taking Orkambi early on in life will assist in dramatically slowing the progressiveness of CF.

We ARE making great strides and there IS so much hope.

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