Diamox for IVIG Headaches – IVIG #13

Since the more common remedies for IVIG headaches did not work for me, a friend suggested I ask about trying a diuretic called Diamox. My doctor was down with the idea, so I tried it out with IVIG infusion #13. My IVIG Headache History RecapI experience no headache whatsoever during the infusion. The headaches usually do... Continue Reading →

September 2016: Weddings and -ologists Galore!

As predicted at the end of my last post, I did not post at all last month because it was busy. Here is how my month went... First up was the wedding weekend. On a Friday, we traveled from Illinois up to Iowa to attend a wedding on Saturday. We thought my body would behave... Continue Reading →

POTS Alert Cards in English and Spanish

Going to a country where I am unable to speak the native language was a bit concerning for me as someone with a rare medical condition. I knew I needed to make sure I would be able to somehow communicate information about my medical condition to health professionals if the situation were to arise. Learning... Continue Reading →

When people say I look pretty…

I haven't posted in forever! That's because I've had things to do each week and weekend. Typically, my social life is one family event a month, one or two medical visits, and the rest of my energy goes to existing, hanging out at home with Jake, and playing with Emma when she comes. Up until... Continue Reading →

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