Author: Lauren

The universe is telling me that I need to start blogging again. In the past few weeks, three people have reached out to me because I/my blog/my writing inspire them. To be honest, these past few weeks I have not felt inspiring. In fact, last night, I went to write a blog about the honest emotions I was feeling during my most recent bout of sickness and I never published it because it was “too negative” and I didn’t think it would embody the spirit of this blog:  “a blog about staying positive, defining yourself, and remaining strong throughout it...

A lot of friends and family members have been wondering how I’ve been doing these past few months since starting Orkambi. This month will mark my 6 month anniversary since starting Orkambi so now is the best time for the update! I was hesitant about making any drastic claims about Orkambi within the first few months (besides my incredible FEV1 improvement)  because a lot of CFers and their families follow me on facebook and on my blog and I’m not so into comparing stories on drugs. At the beginning, I joined all these Orkambi groups and wanted to hear EVERYTHING, and I quickly...

If you had told me, when I was in high school, and even in college, that at age 25 I would be going for my Masters and looking forward to a long, long life, I wouldn’t have believed you. Age 25 was a blur to me, mired in uncertainty and sickness. After graduating from Stonehill in 2013, I assumed I would do what I can, work for as long as I could, and not waste much time doing anything beyond that. Investing in my future wasn’t an option… because I felt as though I probably wouldn’t have much of one. Although...

Last week, I had the privilege of touring the Vertex Pharmaceuticals building in Boston. Since the new building went up in the seaport district, I have driven by it many times, trying to snap photos out of the window or on the sidewalk. The fact that this company, that would ultimately create a drug that would change my life, has ben right in my backyard is really cool. I’ve been following the developments of CF drugs from Vertex since I was in high school almost 10 years ago. While I was off living my life, waiting around for something that...

It has been a month on Orkambi, and I’m already starting to feel the effects in a very real way. I didn’t want to post 2 weeks in because I knew a lot of what I was feeling was the placebo effect, but I have begun to notice my “new normal.” To start, and to clarify, Orkambi is not a cure. Many people have asked if I get to stop doing the treatments I do everyday and the answer is no. I’ll still have some mucus in my lungs, I still have a serious bacteria in my lungs, and...