Today one of my doctors referred to my case as a “zebra.” This term is used in medicine for an unlikely diagnosis. In medical school, students are taught how to think logically in regards to differential diagnosis: “When you hear hoof beats, think of horses, not zebras.” In other words, look for a common illness and not so much a rare one. Unfortunately, there are some doctors who do this to a fault. Yet another reason why awareness is key.
In my family – it’s all about the zebras. We’ve got a couple of horses in there too but our genetics are practically screaming zebras at this point. When I fill out the family medical history portion on my medical forms, I run out of room. Without fail. Let’s just say it’s been enough for most doctors’ jaws to drop.
Perhaps it is this knowledge that made my primary doctor take me seriously in my first visit. I came in her office nervous but prepared with my complete truthful history, a list of issues I’ve been having, and of course – the family medical history. I was terrified that she would confirm what I had made myself believe for YEARS now – that it was all in my head and I was just crazy and a hypochondriac (i do actually have a few of those in my family as well and that is exactly why I have stayed far away from doctors as possible). I made myself believe this even though there were people, doctors even, that could physically see something was wrong at times.
I am a mother. My daughter is 7 years old and the last thing I want is for her to ever have to deal with some of the things I have dealt with. I want to save her from everything I possibly can. I believe that becoming knowledgeable in my health and my family’s health will give her an advantage. I want to be more proactive with her than I was able to be for myself (though I am definitely working on that now).
To be honest: Not feeling quite healthy your whole life without knowing a good reason (or even if you do have one), you end up becoming that person who always has something. People become annoyed by you. They stop asking how you are. They even stop believing you at times. Let me be clear. I am not on a search for what’s wrong because I want to be sick or want diagnoses or I want to be on medication and have this sort of attention. I hate medication and have tried my hardest to be on as little as possible (I don’t even like to take advil). I want attention for the things I am doing right – like my photography for instance. There are so many things I don’t talk about because I don’t want the sympathy and people fail to realize that. I am not even writing this blog for the poor me attention. I want there to be awareness so others don’t have to go through what many of us have. I do it for my daughter. I do it because I am a person that processes things out loud (or through writing). I believe a person’s story, even on one subject, has the ability to help other people. As a result, I believe in sharing our stories, both good and bad.
My ultimate goal is to overcome all of this as much as I can and to prevent as much as possible for my daughter and any future children I may have. I want to do this as naturally as I possibly can – dietary, lifestyle, etc. I want to find the cause of my POTS and it’s likely I have one to be found. There are already several possibilities.
So even though I am currently having a moment of not wanting to focus on my health so much, I am going to keep fighting and researching. I am going to remember that for me, being a good mom is about taking care of myself so that I can be the best for my child. I am going to keep speaking out about what is going on and I am going to be grateful for the people who continue to support me along the way.
Here is a photo from a few years ago. Can you find the zebra? Look at the skin tones of the feet. It’s subtle…but it’s there. This is one of the many physical signs that pointed to something not being right.
photographing POTS 