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I’ve mentioned before how weather changes affect my health and managing my Pompe disease. There have been a few times when I had to worry about minor things like a simple thunderstorm. Once I had to go to the hospital just for electricity to plug in my breathing machine because a thunderstorm knocked out my power. We even lost power one time in the summer on a 95-degree day. The power lines were knocked down in the neighborhood and if the lack of power wouldn’t kill me the heat definitely would have.

It’s little things like this that I have to deal with but I still carry that fear of much bigger disasters like earthquakes, hurricanes, tornadoes, floods, wildfires, and my biggest fear tsunamis. Major natural disasters are so rare that people like me don’t think about them but I do, and it sucks to know I’m not prepared for a natural tragedy and neither is my insurance.

I don’t have the mindset to think about protecting my body or the medical equipment my body needs. I don’t dwell on this often because my area isn’t prone to natural disasters. I think the worst we ever have are snowstorms and earthquakes are very scarce. However, I don’t plan on living in Cleveland forever. 

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So my question is, what do people with rare diseases and disabilities do to prepare for natural disasters and will we be covered and taken care of after, if something tragic happens to us? I would like to ask this question to medical physicians just because I never have before, but I’m scared of the answer I would get.

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When you don’t have a big family or a lot of money, losing everything can be a scary thing, even the thought of it is scary. And of course, I know all about insurance and backup generators and such things, but look at the struggle of countries that have suffered the aftermath of natural disasters. It takes months even years to rebuild and get back to a normal life. I just can’t even imagine what I would do. So the only thing I can do is research. 

I have to start asking questions and getting more information. I recently had a conversation with my respiratory service technician who checks my ventilator monthly about traveling. She told me if I travel out of town to always bring both of my vents and to let her know where I’m going so she can give me contact information for respiratory services where I would be just in case I ran into a problem with my ventilators. That’s not the same as losing everything in a natural disaster but the fact that having that conversation and learning that I would have that kind of support made me feel really good.

My vents are the most important thing in my life. They are my lifeline so I always have to take caution and protect them from everything, even the weather. I also want to inform others that because most of the time we get weather alerts and warnings, our caseworkers are supposed to instruct us on what to do to remain safe. If your caseworker doesn’t do that then they are not doing their job. I didn’t learn this until later in my 20s when I was told that by my caseworker, who I miss. 

As I mentioned before, it’s all about knowing the process and resources you have available for you because the last thing you want to do is freak out when everyone else is freaking out. If you’re a person who gets stressed out and worries like me, then ask questions and do a little research.