World Rare Disease Day 2015

Chronic illness selfie.

Today is Rare Disease Day. I was going to record a video, but ironically my rare diseases got the best of me the last couple days.

In the middle of a dental emergency gone medical, I have been to the dentist, the ER, urgent care, and the cardiologist in a little over a week. By the end of this week I will have been on 3 types of antibiotics, 2 narcotics, had a shot of morphine (or as I like to call it, worthless), and received a new diagnosis or two that I already suspected I had, since it’s related to the other 3 rare diseases I have.

I have dysautonomia and hyperandergenic postural orthostatic tachycardia syndrome, which means that my autonomic nervous system flips out when I not laying down. The autonomic nervous system controls all the things your body does that you don’t have to think about: blood pressure, heart beats, breathing, sweating, digestion, fluid regulation, and so on and so forth.  Something about the infection in my jaws and teeth along with the stress of it all set it off this time in an obvious enough manner that got me diagnosed. I’ve gained 10 pounds in the last week due to swelling. I’ve been in a constant state of tachycardia (fast heart beat) and palpitations (noticeable heart rate) along with high blood pressure as well. 

I get sweet old lady compression stockings to go with the cane I use to stay upright. My health insurance doesn’t want to pay for them, much like they don’t want to pay for an ultra lightweight wheelchair I’m trying to figure out how to get so going grocery shopping doesn’t take me out of play for 4 days afterwards due to fatigue. Let me tell you, compression stockings that go up the entire leg? Pricey. Like pair of quality jeans expensive.  Meanwhile I’m also wrestling with the state over SNAP benefits, because we can’t afford the multiple food allergy and celiac (medically suspected but not diagnosed) diet otherwise that keeps us all healthy… Which is also low in vitamin a while high in potassium and sodium.

So my rare diseases, which all but the pseudotumor cerebri my husband also has… Every day is rare disease day for us. We live with Ehlers-Danlos Syndrome Hypermobility Type, Dysautonomia/POTS, Wolff-Parkinson-White Syndrome, Pseudotumor Cerebri, multiple food allergies/intolerances, fibromyalgia, and other things I’m too foggy to remember every day.

But we manage and we smile. We have as much joy as sorrow. And we even have some good days.

I’m going to talk more about these conditions this year, because it’s part of my truth and story. I’m a disabled person. I’m not going to stop talking about it… Well, okay, I’ll probably hold off on until recovery after getting 6 teeth removed on the 10th. I don’t plan on blogging while on narcotics (except, you know, today…).


4 thoughts on “World Rare Disease Day 2015

  1. I have nothing useful to offer you, but I just wanted to say I wish you well and I hope you get back to your normal level of health soon.


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