Below is a little awareness game for social media. It's kind of like the cancer awareness you've probably seen floating around. There's two parts to it. I decided to keep it PG this year but next year, all niceness is off- it's gonna be rated R or worse (is there worse than rated R? Fucking rated R?)
Anyways, here's the first part: Make a sentence and post it to your status. Whoever comments or likes it, you send part two to their inbox. Or send a message to friends that they've been selected and have them post this as their status. Either way works, either way brings awareness and that's what we need. Since I have BD brain, if it doesn't make sense, make it sound good. This is my first time doing this so I'm no expert, just trying to raise awareness.
Birth month:
January- I lost my car keys
February- I made coffee from scratch
March- I was driving
April- I clicked my heels together three times
May- I made whoopee
June- I won a convertible
July- I had a shotgun wedding
August- I planted flowers
September- I fell down the stairs
October- I farted
November- I laughed so hard
December- I was pulled over for speeding
Day you were born:
1-While fraternizing with Dax Riggs
2- while playing chess
3- while in the mountains of Tennessee
4- while whistling “Sittin On The Dock Of The Bay”
5- while crying over “Ain’t
No Sunshine”
6- while drinking 15 glasses of wine
7- while brushing my hair 100 times
8- while doing 100 pushups
9- while hitting my butt and flatulating
10- while frolicking around in my underwear
11- while playing soccer
12- while howling like a wolf
13- while watching Tank Girl
14- while barking like a dog
15- while watching the rain fall
16- while counting to 3,130
17-
while listening to Sublime
18- while picking my nose
19- while singing loudly in the car
20- while scratching my butt
21- while debating
over if the toilet paper roll goes up or down
22- while debating over if the chicken or egg came first
23- while taking a selfie on a toilet
24-while scratching my butt
25-while removing a snuggie
26-while rowing a boat to Hawaii
27- while traveling to Wabasha, MN
28- while visiting Minneapolis Institute of Arts
29-while fishing for walleyes
30- while cutting my toenails
31-while eating seaweed
Color of shirt you are wearing:
Gray- and peed my pants from laughing so hard
Blue- and hit a pterodactyl with my car
White- and creating shenanigans
Pink- and hitchhiking to Antarctica
Black- and streaking during a bar mitzvah
Brown- and moonwalking on my deck railing
Purple- and wearing my sunglasses at night
Yellow- and lying in bed with Batman and Robin
Red- And eating apple pie
Orange- and drinking a martini
with Jonny Depp
Green- and carrying moonshine for my grandma
Silver- and then I found five dollars
Multi-Colored- and ate a 12 piece of chicken all by myself
The second part:
Guess what? Tag, you’re it! It’s your turn to play the
Behcet’s awareness game. Why? Read below.
The month of May is Behcet’s awareness month. May 20th
is Behcet’s awareness day. What is Behcet’s Disease you ask? A rare autoimmune
disease with no cure. There are an estimated 16,000-20,000 of us in the USA
with this special disease. It involves blood vessels of all sizes throughout our
body. Our only hope is for remission or to find medications (usually for Lupus,
RA, or chemo) to help manage symptoms because there is no specific medication for
this disease. Most doctors have no idea what Behcet’s even is! Yes you read
this correctly! So we have to educate them. Most of us go years without being
properly diagnosed- let alone being treated properly with medications. Due to the
majority of doctors not having a clue, we are often treated like we have mental
illness, are making it up, or are drug seekers. No one should ever be treated
like this. It can and does trigger other autoimmune
diseases.
Symptoms range daily from: Joint
pain, nerve pain, nervous system involvement, headaches, occipital neuralgia, fevers,
GI ulcers, mouth ulcers, genital ulcers, fatigue like a semi-truck has hit you,
bone pain, eye problems- we can go blind and many other eye issues, mouth pain,
teeth and gum problems, rashes, blood clots, and many more!
Every day is different for us -
if you see me doing things one day, I may be in bed the next, then up again the
day after, or in bed for a week. It truly is unpredictable!
And just because you see me out of bed one day, that does not mean I feel well,
it just means I was lucky to get out of bed. Most of us look normal, hence why
it is called an invisible illness. Usually only our immediate family see us
looking like death. Some of us have gained weight from the medications (thank
you prednisone- we have a love/hate relationship with you!), so just because we
look normal but may be overweight, does not mean we are lazy, our bodies are
going crazy on the inside!
Emergency room visits are common
for us. We maybe be going in for stroke symptoms only to find out it’s a new
type of headache with stroke-like symptoms. Guess what? You still have to go
because it really could be a stroke! Apply this to most of our symptoms and it
just gets to be overwhelming.
Most of us have had to stop
working to due this disease. Stopped dead in our life tracks- no work, no
school, etc. Imagine your life being turned completely upside down. Imagine
this disease taking a toll on every area of your life- every area.
Everything we do comes with a
cost...the more we do, the more pain/symptoms
result. Sounds like fun, huh? Because there are so many issues with invisible
illnesses and handicap parking, I feel the need to speak on it. I may feel
decent when I start shopping in a store, but I could easily not make it out.
When you see someone who looks healthy parking in a handicap parking spot with their
permit, do not assume they are healthy (it’s called an invisible illness for a
reason). This disease is difficult enough to live with without people saying “you
don’t look sick” or “you’re not handicap”. Don’t assume and don’t judge because
this may be you some day.
Want to read more what living with
Behcet’s Disease is like? Check out the Magical Grab Bag of Behcet’s at:
So have fun. I hope this helps to raise awareness. Hope you are as pain-free as possible on this Behcet's Awareness Day!
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