Thursday, March 13, 2014

Banning the prefix Dys-

The predictability of routine. The certainty of control. The tidiness of outcomes. Ahhh, my comfort zone. Anything that starts with the pesky little letters "dys" does not fit my criteria of acceptable.

dys- = bad, difficult, disordered, abnormal, painful

See what I mean. It is just no good. Especially when it is referring to our bodily functions.

Back in my nursing days my biggest pet peeve was wishy washy doctors. I was okay with the nice ones and the rude ones, as long as they were consistent. Those Dr. Jeckel and Mr. Hyde ones killed me.  I pretty much feel that way about life in general. I like consistency.

It is incredibly difficult, bordering on impossible, to explain to people how dysautonomia affects me. Especially if it starts with, "I have POTS." The strange look and reply of "You have WHAT?" is sure to follow. I have this funny association in my head between the POTS and the piles. Both are a pain in the a**. One figuratively and one literally. (more of a family joke)

I think I should just start telling people to put dys (or one of it's meanings) in front of everything our bodies do and that pretty much covers Dysautonomia.

bad dizziness
difficult breathing
disordered thought process
abnormal -well everything
painful digestion

Yep! It works! The list could go on and on forever. Just try it. Pick anything.

I suppose the medical professionals have to have some Greek to throw around so that they can speak in code, as if no one should know what they are talking about.

dyspepsia- painful, difficult, or abnormal digestion
dyspnea- difficulty breathing
dysrhythmia- abnormal heart rhythm

Better yet, I will make a million copies of this to hand out like business cards. Covered! (kind of)

The biggest problem for me is the unpredictability of it all. Not that I want to have nausea all of the time, but it would be nice if there was some sort of pattern to it other than something in the universe is not aligned properly. I am cool with feeling dizzy when standing, but the random feeling that my chair has fallen out from under me while sitting is not cool.

The positive side of random = spontaneity, which I otherwise have none of in my life. I suppose if I look hard enough or babble on long enough, I can find some good in all of "dys".


  1. Hi Julie! I'm a homeschooling mama like you. Medical professional like you (physical therapy here) and google searches keep bringing me back to your blog. hmmmm. I appreciate your homeschool info, but am most intrigued with your POTS diagnosis. I'm an ICU/neuro specialist (not ortho like most PTs) and those areas are rife with differential diagnoses. The first thing I thought of when you described your signs and symptoms was PTSD combined with some fibromyalgia.

    Have you tried St Johns Wort for the impending doom feelings?
    What about gentle exercise? Trigger point therapy?

    Just throwing things out there. When I had severe PPD I used the "fake it until you can make it" mindset. Even though I felt like, well, nothing, I knew that I was the only one that could help me (being the one that everyone looks to for help).

    I hope you're feeling well today.

    1. Thank you Wendee. I have Ehlers Danlos and POTS. I am well aware from many others that the symptoms can present as having a psych root, which can make getting a proper diagnosis very difficult for some people. The physiological manifestations of EDS and autonomic dysfunction are seemingly endless, which makes for quite a puzzle for the doctors.


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