The Wedding: Coming Soon

Tomorrow (Saturday) night is the day I’ve long been waiting for: my wedding! The preparation for this wedding has highlighted all of the blessings in my life. My sister flew in from across the country to host my bachelorette party–and the time and effort (and stress!) she put into the celebration brought me to tears…

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#GivingTuesday: Here’s What You Can Do For Me

Working at Global Genes changed my perspective from day one. Rare disease can victimize you, make you feel helpless and hopeless. If doctors didn’t know how to treat me–who did? If pharmaceutical companies hadn’t produced a drug for me–who knew if they ever would? But Global Genes opened the curtain to a world that only…

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Today We Take the Elevator…and the Inhaler

Like most POTS patients, I’m not a fan of elevators. When your symptoms involve a general sense of not having your blood flow into the correct places–you can often feel like your head is on the third floor while your feet are somewhere on the first. But today taking the stairs was an even worse…

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How Healthy Can I Stay Up Until the Wedding Day?

We’re getting real close to the big day. So I’m trying to be extra vigilant about taking any and every preventative treatments that I know of. I have (by and far) passed the deadline where I can change even one milligram on any of my daily medications. So anything I do has to be outside…

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October Business as Usual: Spiders, Pumpkins, Pilots and Co-Pays

Boy is it easy to get lost in the waves. The past two weeks have been gastroparesis–migraines–joint pain–gastroparesis–migraines. Antibiotics. Scans and blood tests. Medication. I realized I wasn’t posting because, frankly, I didn’t think it was that important. No, not important. Just not different. I think the only thing new/different about this wave is that…

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