Wednesday, June 18, 2014

My Journey with MG, #MyastheniaGravis Awareness Month

It's hard to explain to it.
It's hard to understand it.

Living with an invisible disease. One day you are fine, the next you can barely function. 

You'll get talked about. Called lazy. Dramatic. Even drunk. People won't believe you. But it's real. And you're not alone.

Myasthenia Gravis is an autoimmune neuromuscular disease. It (most commonly) causes weakness in the voluntary muscle groups - including those used to breathe, see, and swallow.

I was diagnosed in January of 2013.

via Pinterest
I suppose I should have seen signs long before I began seeking medical help.

I had been having breathing troubles, but chalked it up to my seasonal asthma and allergies.

I had also been having trouble swallowing, but again, thought it was part of acid reflux that bothers me from time to time. Which really isn't the same, but I was being oblivious that something would be wrong with me.

Then my eyes. I started having blurred and double vision, with the occasional droopy eye- in my right eye. I went to an ophthalmologist and they gave me glasses. Mind you, I have always had better than perfect vision so this was a bit of a surprise.

The eyes got worse. They started drooping daily to the point I couldn't even drive so at the advice of my doctor (who I finally went to), started wearing an eye patch, as they began testing me for different things.


During the testing periods, my symptoms escalated. The exhaustion, fatigue, trouble swallowing, slurred speech. I was getting worn out just from a simple staircase. 

No one understood what was going on. I spent thousands of dollars and months in and out of the hospital and specialists offices, draining my HSA account, only to be told "we don't know" and passed off to someone else.

Meanwhile, friends and family were also at a loss. I would have an occasional good day, followed by two weeks of pure h-e-double hockey sticks. I was called lazy, a drama queen, told I was acting drunk. I felt so alone. The stress only made my symptoms worse. I was missing periods. My work was suffering. My life was a mess. I was only making it until 1pm in the day and would come home and just lie in bed - sometimes sleeping, sometimes just crying in my own self pity.


Thankfully, my boss' wife - who is a nurse- was sympathetic. They happened to go to church with a man who was diagnosed a few years back with Myasthenia Gravis. (What's that?) I had never heard of such a disease. She told him my story and he agreed, I needed tested for MG. 

I didn't want to believe that was the case. It sounded so serious and scary. To my shock and utter disbelief, at my next appointment, my doctor said to me "Have you ever heard of Myasthenia Gravis? I want to have you tested." My jaw dropped. I laughed and cried all at once, then explained to her the conversation I had just had days prior. 

After more waiting for appointments and getting to the right specialists who were familiar with the disease, I had additional blood testing and an EMG (electromyography), it was confirmed. I had Myasthenia Gravis. That was finally in January of 2013.


Since then, I've cut dairy and gluten from my diet completely. When I was first diagnosed, I was taking my medication 6x per day. Once I made the dietary changes, I felt better and have been able to cut it to closer to 3 pills per day now, instead. Amazing!

I also have started running again. It was always my love and passion, but when all my symptoms spiraled I stopped. Everything. And it's taken almost another year to really feel like I'm in a good place exercising again. I'm determined to not let this disease stop me.

That comes with a price though - Listening to my body. I struggled after diagnosis knowing when I needed to take a break, stop, rest, and recharge. I push myself too hard, too far, and then I pay for it for weeks afterwards.

I'm doing better now. Much better. More good days then bad, but I'm still learning. Learning when to stop, sleep more, and my limits.


I try to eat healthier. I've noticed, lately, I feel so better when I limit my animal protein to once daily (or none at all). I try to pump myself full of fruits, veggies, greens, and start my day with healthy grains - like a bowl of gluten free oats and fresh fruit. 

Also, I read read read as much as I can about autoimmune diseases and food. A great article to start with is this one: Foods People with Autoimmune Diseases Shouldn't Eat.

I'm not perfect, so don't get me wrong - I'm also not a health care professional so this is just my story and what I'm doing.

My typical "smoothie of the day": Usually packed with fresh and frozen berries, mixed greens,
cucumber slices, lemon slices (no rind), banana, and water
So why am I sharing this? 
June is Myasthenia Gravis awareness month.

It's a reminder that you shouldn't judge. People around you can be fighting an invisible disease and you just don't know it.

It's a post to spread awareness to someone else who might be struggling, or know someone who is. Feel free to reach out to me for questions or support. 
 
It's also to say there is hope. There is life after being diagnosed. Some days will be good. Some will be bad... really bad. But don't lose hope.


I fight for this girl. She has taught me so much. I have to keep pushing for answers, for new hope, for my health because of her. She deserves nothing less from me!

Photobucket

3 comments:

  1. Keeley, thank you for sharing your story, so that others can have a glimpse into the world of having an invisible illness. I relate so much to this post and am on the same journey of trying to find the magic "Selena Diet" that will work best with my particular body chemistry. Good luck on your quest to find your magic "Keeley Diet"! ((gentle hugs)) I can't wait to see you in Las Vegas!

    ReplyDelete
  2. Invisible disability is so hard to live with and so hard to share with others. Thank you for putting this out there and I hope your continued journey is not a difficult one. You are such a sweet person - even though you are wrestling with so much personally you still bring a lot of happiness to others Keeley! Thank you for being you!

    ReplyDelete
  3. Its wonderful you are able to share your journey and how you've taken hold of your health! My dad has MG and explaining what it actually is it to people is really hard! Trying to get him to be proactive in his health is even harder. Thanks for sharing!

    ReplyDelete

Let me know your thoughts!

Related Posts Plugin for WordPress, Blogger...