I started this blog because I love to write. But without a specific focus, I found it hard to find something to write about every day. In the back of my head I knew the perfect direction to take From A to Pink, but I was scared. It’s a very personal subject, something I’m not used to talking about with people until long after they’ve gotten to know me. But I decided that the potential gains far outweighed any fears I was harboring. So here we go!
At the age of 16 I was diagnosed with cystic fibrosis, a genetic lung disease. (To read more about what CF is and my experience with it, see the tabs above.) In one way, it was a relief. I had an answer for why I’d been so sick for the past three years. But mostly, it was overwhelming.
And it still is. Which is why I wanted to start this blog.
On New Year’s Eve, my friends and I were listing all the things that we hadn’t done or experienced 10 years ago. For example, we didn’t have our driver’s license, didn’t pay bills, have boyfriends/fiances/husbands. And I didn’t know I had cystic fibrosis.
These 10 years have been hard. And I’m still a long way from fully dealing with what it means to have this disease. And completing the daily treatments I have to do continues to be a struggle, even though they will add years to my life.
I’m hoping that keeping this blog, and sharing my struggles with my readers, will help hold me accountable. Because when it comes down to it, I’m the only one that can keep myself healthy. I can decide to take my medication or not. I can do my chest therapy twice a day, or I can half-ass it. I can go to the gym, or I can sit at home and watch TV.
CF is a tricky disease. We carry bacteria that are only harmful to other CF patients, meaning that support groups (aside from ones online) are nonexistent. If I find out someone has CF, I have to keep my distance. It can be very lonely.
Luckily I have an amazing boyfriend, wonderful family, and fabulous friends who support me in whatever way I need. Whether that’s a shoulder to cry on, letting me vent my frustrations, or gathering people to participate in a fundraiser. But they can only do so much. Like I said before, the rest is up to me. And I’m hoping that keeping a record of how I’m thinking/feeling will help me stay on track. And give me a place to talk about my struggles without feeling like I’m burdening someone.
The other reason I wanted to make CF the focus of my blog is because it’s such an unknown disease. And awareness is key in finding a cure.
The first memory I have where I realized how little people knew about this disease was at a Martina McBride concert. It was a benefit for CF, and the first one I’d attended since my diagnosis. Seated next to me was a mother and her young son. At one point he turned to her and asked, “Mommy, what’s cystic fibrosis?” To which she replied, “I’m not sure, I think it’s a muscular disease.”
It’s because of experiences like that that I want to educate people about CF. Especially because my belief is that people would be much more willing to support a cause that they understand. One where they know where their money is going (research), who it’s going to help (CF patients), and what it’s for (to make CF stand for “cure found”).
I don’t want this blog to become all CF all the time. I’ll still post about music I’m listening to, books I love, and what I did over the weekend. But it’s also going to be a place for me to talk about whether or not I did my treatments this week, what things I’m struggling to deal with, my appointments at Hopkins, advancements in research, etc. And a place where people can ask questions, gain insight on what it’s like to live with a chronic illness, and learn what cystic fibrosis is.
I’m really excited for where this could take me, and I thank you for joining!
(P.S. Answering questions/getting constructive criticism/meeting others with similar struggles/etc. is a large part of me starting this blog, so PLEASE don’t hesitate to contact me! Email FromAtoPink at gmail dot com.)