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Showing posts from September, 2017

Worried for Puerto Rico

Living with a rare and chronic illness is never easy, but try doing it in the face of an epic natural disaster – no water, no power, no fuel – forget easy access to medical care, medical equipment or medications.

My family connection to Puerto Rico is distant. My great grandfather was from the northwest part of the island. He came to the mainland United States to go to college, and eventually became a professor at the University of Oklahoma. He was a linguist. While I inherited an HPS gene from him, sadly I didn’t get the language gene.

Living in Europe, I learned a lot about the history and culture of the other aspects of my heritage, but I never knew much about Puerto Rico. My grandmother would tell us stories about visiting the family plantation when she was a child, but that was about all I knew of the place.

When I was diagnosed with HPS, one of the blessings (instead of curses) that came with the diagnosis was a sudden intimate connection to the island. Suddenly I knew tons of p…

Health Update:

It has been a rough few weeks here, but could be much worse. I’ve had a cold for a week and a half. Thankfully, (knocking on wood) it hasn’t impacted the amount of oxygen I need, and so far, hasn’t become a respiratory infection. Yet, just having a cold these days makes me so anxious! I don’t have any reserve at this point. One bad infection, and I’m going to be in the hospital until I get lungs, or I don’t. I just don’t have too far to go before I won’t be able to get enough oxygen at home.

So, you might say, I’m paranoid. I’m paranoid about germs and when I get sick, it’s so much more than just having a little cold. Thankfully, only one day of a fever etc. The trouble is I get better and I think I’m recovered, and then it seems to come back.

The medicine the transplant center gave me to help with the cough is helping. I still cough a lot though. I’m so tired all the time because I rarely sleep well. But, with the medicine, my coughing fits aren’t quite as long. I haven’t coughed so …