Things that I wish someone had told me when I first got sick.

You will grieve.  The grief and longing for your health and previous lifestyle will seem unbearable but it'll get less intense over time. When the gravity of what was happening to me became clear and I realized that I wasn’t going to quickly bounce back to my old life, I felt suffocated and fell into … Continue reading Things that I wish someone had told me when I first got sick.

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Inbetween sick and healthy.

    Right now I’m in this weird static period of illness that not a lot of healthy people understand. I’m still sick and struggle with symptoms on a daily basis but I’ve been this way long enough that it’s starting to feel like my normal and I’ve stopped talking about how unwell I feel … Continue reading Inbetween sick and healthy.

Searching for answers with a misunderstood illness

“We devoured what research there was, we experimented on ourselves. We became our own scientists and our own doctors because we had to be. " -Jen Brea Since I got sick, my parents and I have had to persistently do our own research and experiment with different treatments, because if we hadn't, I would have … Continue reading Searching for answers with a misunderstood illness