Candid Insight on MG, a Chronic Condition

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When I was first diagnosed with MG, I was in school studying to become a respiratory therapist. So I had a little insight. But I realized quickly that no one else knew about this rare disease. So I thought the best way to get awareness out there so they could understand was to create a blog. My blog Ashley's Anatomy pretty much goes in depth about myasthenia gravis.

I had a lot of free time, hospital, bed-ridden. So I spent a lot of time sharing my experience educating people, answering questions. My motto is chronically navigating through life, because this is my normal and that looks different for everyone who is dealing with a chronic illness. It's always amazing when I log in to social media, most times it's messages from other people. We're talking about our treatments and what was the side effect when you did this. It's so insightful. I get a ton of thank you messages or people who just say they feel seen. And to me, that means everything. That's why I do it because I know someone sees it and it's going to help them. Beauty and wellness products have always been a part of me. I thought, what better way for me to just include the beauty, the wellness products into Ashley's Anatomy. Lately, I've opened my candle shop. This is where I actually make all of my candles for my business astrology candles. During Myasthenia Gravis Awareness Month, I have a special candle for all of my MGers. People can buy it on my shop and proceeds go to myasthenia gravis research and just raise awareness.

So yeah, it's ironic that I was in school to become a respiratory therapist and myasthenia gravis heavily affects your respiratory muscles. I definitely have had experience of meeting and having to take care of other MG patients. It's very humbling. I understand wholeheartedly how it is. I also do public speaking events with other clinicians and therapists in the hospital to educate them about myasthenia gravis. To someone newly diagnosed, just literally take it one step at a time. Your normal now is going to look slightly different. I call them modifiers. You're able to do things like you used to enjoy, but maybe modify it. So just being gentle with yourself and just understand that you are not alone. There's other MGers out there.

Taking care of your mental health is number 1 top priority, because if your mind is not doing too hot, your body is sure to follow. You can oftentimes feel very, very alone. Talking about it will get you through it. Advocate for yourself. Don't feel uncomfortable talking to your care team, your doctors, and asking questions. Don't shy away from actually doing your own research, so you can have questions to ask.

Support systems, I want to say we don't often talk about this enough. There's no way that I would be here thriving, being in the correct mental state if it wasn't for my support system, which is my mom, shout out to my mom, and my sister because like I said it makes all the difference to know that at the end of the day, I'm not doing this alone. So I would say go find your people, go find your team, your care team and your mental health, and you'll be unstoppable.