Sep 27, 2017

Drea, Janice, and the MG Walk

Frustrated with "The Eye," misbehaving
while at Janice's apartment/office.
It all started about about ten years ago when I was working in a bead shop in Maine and I found it difficult to pick up small beads...but I brushed it off. I have naturally crooked fingers, so I figured "that's why." I also developed double vision, but my mom has some major vision problems, so it must be genetic, right? It slowly got worse, but then it got so bad I was having trouble functioning...one eye started moving inward like a lazy eye and I bumped into things A LOT. I was also feeling tired all the time, sometimes I would slur words together, and I confessed to Janice that I was worried about my poor memory. I didn't really know what was wrong, but whenever I brought these things up to doctors an excuse was always found...until this winter when an ophthalmologist discovered what was going on.


"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.beadshop@gmail.com


Many thanks and, as always,
Happy Beading!
Drea

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