Cystic Fibrosis Awareness Month: One Day At a Time

As Cystic Fibrosis Awareness Month comes to a close, I want to thank you all. For reading, sharing, commenting, supporting, and being the most wonderful community I could ask for.

Obviously raising awareness is important the other 11 months of the year, too, so I’ll be continuing to do what I can in this little space to share my story – and I encourage you to do the same.

Tomorrow is my tri-monthly Hopkins appointment, and once again my nerves are getting the best of me. I’ve been thinking a lot about CF lately, more than usual. Partly because I’ve been more active in the community during CF Awareness Month than ever before. But I also think it’s because I have more time on my hands.

I left my job back in November for many reasons, one of them being to focus on my health. And while it’s been great, it means I’ve had more time to think about this disease. The future, the fears, the daily hardships, the questions, the community and all those affected.

Maybe that’s why I’ve been more quiet on the blog these past couple of weeks.

On May 1 I came ready to embrace this month of awareness and truly participate. I’m proud of what I accomplished, but after the first couple weeks I found myself consumed by it. I dove headfirst into a community I’d held back from for so long, largely out of fear – both of the known and unknown.

All of this to say I’m trying to find a balance. The CF community is made up of some of the most supportive, beautiful, and compassionate souls – people I desperately need in my life. It’s also full of heartache.

It’s all too easy to get dragged down by the sadness that surrounds having cystic fibrosis. I find that especially true as I approach each appointment. But I know indulging in my fears doesn’t help. So I struggle to pull myself out, to replace the negative thoughts with hopeful ones. And, as always, I do my best with each day I’m blessed to wake up to. Reminding myself to take one step at a time, even if they’re only baby steps.

What do YOU do when you get caught up in your worries and fears?


3 thoughts on “Cystic Fibrosis Awareness Month: One Day At a Time

  1. It is great to hear you are such a fighter with your health and activist for CF. I usually try to calm myself down and focus on the positive things in life. It helps me remain calm and cool. Best of luck with everything 🙂

  2. I get out my thankful journal and I just start listing things. It helps snap me out of that place where I feel sorry for myself! Sometimes it takes me a while to be able to think of things bc of the place my mind is at put but once I start an abundance of thankfulness comes out! I think the unknown, the what ifs and scary places can be dark if we let it so I try not to dwell there to long, I choose to trust God that no matter what He’s leading me through –

  3. I get out and do what “normal” folks do. I go see a movie, go to dinner, play a round of golf, plan and execute a weekend away or spend time with non CF folks. This helps me see that there is life beyond CF. And it’s a tribute to those who are struggling and can’t do these things. I’m convinced they would rather us enjoy our good health while we can then sit and waste it being sad or fearful. Fear is best conquered by not giving it power. If you fear what the future may NOT hold then do those things now. I say all this like its easy! I know its not but just doing one thing is a step out of the burdens of today. ALL THE BEST!!

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