Snowflakes stick together

I hit a bump in the road with writing. The other day I tried to write, and I wasn't happy with what came out, so I left it as a draft and continued on with my day. I haven't been able to come up with anything to say, hey that's a first, right? But then just now I read a message from a dear friend who encouraged me to get writing again. She always reminds me when she helps me to thank God and that all the glory goes to Him, so I kind of saw that as a nudge from God, through her, that I need to write. So here I am.

Today the MG community lost another one. I didn't know him personally but he was one of "us"- one of us MGers who so very much need awareness of how serious this disease is and prayers for a cure before more lives are taken by it. In fact, the friend I'm referring to who encouraged me to write again is an MG friend. Most of us with MG have never met, yet have grown so incredibly close. We were brought together because of this horrible disease, but we stay together because of the support and friendship we provide for one another. So when one of us is lost, it touches us all. May God rest his soul and bring peace to his family and friends.

Myasthenia Gravis is serious. Myasthenia Gravis can be deadly. People think because we look fine and even at time appear to physically be fine, we are fine. This disease is unlike any other. Someone can be laughing or working one minute and an hour later, gone. Snowflake disease. Every one of us is different. No two snowflakes are alike. Our symptoms are different, our treatments are different, our response to treatments are different, our bodies are different, our lives are different. A single snowflake is weak alone, but come together with many snowflakes and created is a beautiful covering of snow, or a snowman, or an avalanche. We stick together- to create awareness, to provide support and prayers, to help and teach one another, and for friendship.

Many of us cannot get out often because of MG or another one of the illnesses we have as many of us have more than "just MG". People often laugh at the thought of "online friend" or "facebook friend" or think of facebook as a joke in general- a place to waste time. Well many of us with MG find it a huge blessing. It has connected us who wouldn't be connected otherwise. We've gotten to know one another and we grow together. We provide support more than just MG. We are there for one another when someone is going through a rough time in their personal life, we pray together during the struggles, we make known when one of us is hospitalized or undergoing plasmapheresis or a thymectomy, we even send cards and gifts to one another. It is a second family, our MG family. And to every one who is a part of it- thank you and I care about you.

To anyone who doesn't have MG, thank you also, for reading this and other MG material to learn about it and educate yourself on a rare illness. It's best to educate yourself through those who actually have MG. Unfortunately, much of what is put out there through research and the medical professionals isn't always completely true. We've all read about how those with MG are expected to live a fairly normal life. We are appauled by that. Yes, there is the rarity and God bless them that they can, but many many many of us cannot. We cannot work, we cannot exercise, we cannot always drive, go to the store, clean, do laundry, or prepare meals. And we definitely cannot do it as quickly or with little effort. It takes a lot of time, a lot of effort, and the more we use any muscle the more at risk we put ourselves. Muscles include those involved with breathing and swallowing too.

Realize we are different because we don't have much of a choice, but we try to embrace those differences. We try to do what we can when we can and the best that we can. We learn different things and different ways of doing those things. We find new interests. We unfortunately lose many friends, even family, but we make new ones too. We don't want pity, we want empathy, love and support. And we definitely want awareness with the hope for a cure.

I had no idea I would get MG and I'm guessing anyone who has yet to be diagnosed has no idea they will either. It can happen to anyone at any time, and it's a very serious illness. We have our MG family but we still need our real family and friends too. So don't leave us when times get tough, help us through it. You never know if/when the tables will turn and if they do, you don't want to be left all alone while everyone walks away.

This post really has no single point, just like the last one I wrote but then never posted. But this one I'm going to post anyways because maybe there is something in here for someone, somewhere, I don't know. I do want those with MG to know you are not alone. If you are new to MG or you don't go on facebook or can't attend in person support groups, feel free to reach out to me. You can post a comment and just write on there "private" and it won't get posted publicly. Leave your email address and I'd be happy to contact you and direct you to any resources I can help you find. Snowflakes stick together. God bless.