|Frustrated with "The Eye," misbehaving|
while at Janice's apartment/office.
"You have myasthenia gravis," the good doctor said.
"I have what?!" was my reply.
Myasthenia gravis, or MG, is an autoimmune disease known as the Snowflake Disease, because it affects each of its patients so differently. The basics are the same: a feeling of muscle weakness. My brain and my muscles actually both work just fine, it's the connection between them that's deteriorating. The more I use a muscle, the weaker it becomes. Rest helps, and there are surgical options, drugs, and treatments that can help. But there is no cure and the disease is progressive.
I let Janice and Kate know and eventually told the rest of the team, too. There was huge outpouring of support. Working remotely, I kind of make my own schedule...it allows for me to have a nap (yep, I take naps!) so I can function in the afternoons. I work from home more so I don't have to drive. And I can do my work around the many doctor's appointments and tests I have been going to in recent months. Who can say they have a workplace that amazing and understanding?
In June, during MG Awareness Month, I found out more about the disease. The awareness ribbon is teal...and so my world became teal. I dyed my hair, I got a tattoo, I made jewelry (hellooooo, Bead Aware charms!), I got teal glasses...and in an effort to make a splash, I asked a local landmark, The Capitol Wheel, if they would light up in teal for MG Awareness ...they did!
I also discovered that the Myasthenia Gravis Foundation of America has one big fundraiser, the MG Walk. There are about 40 MG Walks across the nation. They raise funds that are earmarked for research, which is exactly what this disease needs! It's such a mystery, even to the doctors and scientists who study it day in and day out.
Of course, I started a team. Of course, Janice joined! She and I, along with my friends and family, will be walking this Saturday, September 30th, at the MG Walk of Virginia in Springfield. This is not only an opportunity to raise funds, but one to spread awareness of MG and be a part of a community I didn't even know existed. Janice and I want to invite any locals to join us! We would be honored to see you there.
The beadshop.com staff is a very loving bunch, I don't think that's not a surprise to anyone. They've thrown support behind Janice and I for the MG Walk of Virginia, some of the gals want to join the MG Walk of San Francisco, some helped me design my teal MG Awareness jewelry (and my Tiara!), and then Janice came up with a way to raise more funds and spread more awareness: YOU!
You...our customers, our friends, our community...you are the best. Whether in emails, phone calls, Facebook messages, or on FB Live shows, I have gotten to know so many of you. A few of you already knew about my MG, and the support has been unreal. I am honored and humbled to have a chance to tell this story and to ask for your help:
Janice has donated a $50 beadshop.com gift card
that we are "raffling" off to YOU. To win, you donate.For every $5 donated you will receive one chance at winning the gift card. So if you donate $5, your name goes in once. If you donate $20, your name goes in four times, and so on. I will keep track of the donations and tally up the names and numbers, and on Saturday from the MG Walk, Janice and I will broadcast LIVE on our Facebook Page and select a winner.
Donations must be in by Midnight PST on Friday, September 29, 2017 to be eligible to win. Donations must be made to the "Beadshop Dotcom" team member in order to qualify.
Questions? I'm happy to answer and happy to help.
Just email me at Drea.firstname.lastname@example.org
Many thanks and, as always,