Showing posts with label rare conditions. Show all posts
Showing posts with label rare conditions. Show all posts

Wednesday, April 29, 2020

Met my herd!

Did you know that a group of zebra are called a "Dazzle?" So technically I should say that I "FOUND MY DAZZLE!!!"

Where? Well, aside from the fantastic folks in my MD Mixed Diagnosis Support Group, I've also found a ton of them on Instagram. I've only been on Instagram for two weeks, but I was shocked by the number of spoonie fellow wheelers there.


Finding people going through similar challenges and sharing about it openly has been a big boost for my mood and self esteem. 

Because Instagram is owned by Facebook I was hesitant to join. I don't like supporting companies like Facebook who go against my values and ethics, but in this case the pluses outweigh the minuses for me.

Through Instagram I also found this company called "Aware". There's a lot of companies who make jewelry for causes donating a portion to the cause you choose, but this one had a lot of invisible illnesses, including this fantastic ZEBRA necklace for "Rare Diseases". I took out an advance on my May fun money to get it today.


AND what a coincidence? I'm wearing this black and white striped dress my Mama bought me yesterday. Hahah! 



Fellow zebras. 
I encourage you to go find your Dazzle.


(I received no kick back or incentive with this blog.)

Sunday, April 19, 2020

I'm the zebra

I remember early on at a medical appointment, the forgettable doctor told me the following. "We have a saying in the medical industry that if you hear the sound of hoofs look for horses, not zebras". She explained that what I was experiencing was common and not likely to be something rare. She was dead wrong.
I later looked up her strange "zebra" analogy to find it is taught in medical school in regards to "a very unlikely diagnostic possibility". I'm not a doctor, but do have a masters degree in my field of practice, mental health. What I was trained was to "consider all possibilities, listen to your client and rule nothing out". So why do we treat the mind any different than the body? Shouldn't doctors be looking for horses AND zebras? And are zebras really so rare after all? I mean... if you're on an African plain wouldn't you be shocked to see a horse instead of a zebra? 

To put that in medical terms. Maybe doctors aren't finding zebras because they're too busy looking for horses. Seriously. The example of the "unlikely diagnosis" is "When someone develops a cough, a virus or infection is a logical cause and tuberculosis is the zebra". As someone who has been treated for TB I find that to be a bad example. How about testing for all of it?
I mean how can a middle class Caucasian person living in a "safe" small city with good food and clean air not only contract tuberculosis, but also have Rheumatoid Arthritis, survive a brain tumor AND have a very rare muscle disease? (Yes, I'm talking about myself here.) I don't think I'm the only zebra at this watering hole. 

Doctors would be wise to rule nothing out and look for horses AND zebras. To take their patients concerns (and not "complaints" as another doctor of mine called them) seriously. And to admit when a horse really is a zebra. Come to think of it... I'm not a zebra after all. I'm a freaking zebra, unicorn, pegasus that poops rainbows! 

You Can Feel Both

Back when I worked with clients one of the big things we would discuss no matter what the challenge in their lives were, was the concept of ...