Living with a chronic illness has value. The responsibility of care for CF is both active and arduous, and the condition’s aggressiveness is often debilitating, until it runs a person’s life into the ground. Despite that, though, the illness has also shaped me, hardened me and forced me to be in a constant state of...
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A couple weeks ago I wrote about making it through a calendar year without needing to go on IVs for the first time in close to 15 years. Well… that streak was snapped a few days later. No, I didn’t jinx it and no I didn’t bring it upon myself. I had been fighting a...
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It’s a holiday today, (which… does anyone else think it’s kind of weird that we celebrate the executive office of the federal government, especially since our entire existence as a nation is predicated on the idea that no single person should wield too much power?), so that means you get a quick Monday Morning thoughts....
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Adam and I met the summer before my freshman year in high school and briefly dated for a few months that fall. We ended up breaking up but remained friends throughout the years. When I graduated from high school we crossed paths and started to date again and 6 years later Adam proposed and we...
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Inspired by the #HealthPolicyValentines tag, I wanted to give a shot at #CysticFibrosisValentines… Post your love letters, memes or poetry in the comments! Roses are red Violets are blue Sugar is sweet CFRD is too Roses are red Violets are Blue If you miss my vein I’ll stick you Patients patients everywhere!...
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What a time to be alive! Extinct illnesses are BACK. What a time to be alive, indeed. In fact, it’s quite depressing that here we are, discussing the selfishness of people who refuse to vaccinate their kids in response to a mythical fear. It’s equally depressing for all of us to feel the need to...
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Megan Neville takes us through the IVF/PGD process. Our firstborn son Aidan was diagnosed with CF through newborn screening at 8 days old. The initial shock and devastation was overwhelming. I could not believe that this perfect looking baby we created out of love was facing this awful disease. As we learned the realities of...
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