Check your tokens

Day 11! Oh yeah, we're rocking and rolling now. Its amazing that after almost a year of planning, our wedding has taken place and is now its over. What an *awesome* night this was! what an awesome weekend! Two weeks ago, my vision doubled, and then I will tell you we prayed it away. One week ago, we were celebrating with friends and family from all over the world, preparing for our wedding on Saturday. Amazingly enough, my body has held up! Aaaamen!!

Myasthenia (MG), like Multiple Sclerosis (MS) and other diseases, is one with which your energy level is limited. The story is told in many different ways, but for brevity, imagine you have 10 tokens of energy in a given day. Much like currency, you must spend your tokens through the day, and once spent, it is gone. Imagine getting up and brushing your teeth requires 1 token. Cooking breakfast requires 2 tokens. Participating in a project at work under deadline with the boss yelling, requires 3 tokens. You've hardly reached lunch time, and already you're energy tokens have been greatly depleted. You still need to pick up the kids, buy groceries, cook, do homework, etc. Where does the energy come from? There is no such thing as an energy ATM, but you can save your tokens up...prepare for large spending! Our wedding weekend was just that, a large energy expenditure, but OOOOH so worth it.

No honeymoon just yet. Lee and I are already back in action, by contributing to and leading a team with the MDA's Muscle Walk fundraising event tomorrow morning. Such an awesome group of people, striving to help those fighting neuromuscular diseases. We are fortunate that Myasthnia Gravis is one of the 40+ diseases under the Muscular Dystrophy Association's umbrella! This Saturday may require an extra token or 2. Wait, I say that but think better of it now. In taking part in tomorrow's event, I will likely gain a token...boost my energy level a bit, by being around others like us. Actually...we have no problems...when standing next to those who can't stand at all. My tokens will be just fine.

Day 1

That's right, lets jump back up on that horse! I woke up this morning with single vision and reduced redness in my eyes. What normally takes 2 weeks to clear up, has only lasted for 4 days. Awesome!! So, lets start that 'Good Day' count over.....Day 1.

Are you counting your good days? Do you know why they are good days? Have you shared that you're actually having a good day? Hummm....think about the ripple effect you might start.

Day 1...keep it going....

Maybe...

Day 51...and holding....it's something like that. Day 50+ before the double vision came back. I could feel the eye muscles begin to tighten over a 2-3 day span, then caught glimpses of the twin images in my peripheral when I would turn my head quickly (driving). "Oh damn." That was my only thought. That was my perspective of the ordeal I knew the next couple of weeks would be.

I'm not certain if all myasthenics experience the exact same thing when it comes to double vision, but with mine, I'm unable to rest the double vision away. Once it begins, it typical last for 2 weeks. If you've read prior blogs, I've mentioned how my symptoms build up to double vision. This time it snuck up on me; suppose I didn't realize how much my body was dealing with, but it snuck up on me. Maybe I took my 50+ stable days for granted. As with anyone dealing with an ailment, my body wears down much more quickly when dealing with double vision, simply because daily routines require twice as much energy. Focus on which of the two toothbrushes you see, is real? Which corner of the table to do you avoid; which stair is the right one to step up/down; which car is the real one come towards you? OH, i know, driving with double vision is a no-no. I do rest more with double vision, but only because I'm tired. It wont make the silliness stop, however.

Lee and I will be married this coming Saturday. We are SOOO excited and have waited for this day, forEVER! I've prayed and prayed since April, to have single vision on this day. It could still happen, but if not, it will be OK. This time around doesn't feel as intense as it has previously-maybe my tolerance is higher. Those joining us for our wedding, fully understand that I'm a bit wobbly at times, and they'll laugh with me if I tilt over here and there-maybe I'm more accepting. After months of cold, gray weather, we will have a beautiful 70 degree day, perfect for an outdoor wedding-maybe my priorities are different. After a long wait and many trials, I get to marry the love of my life-maybe I'm trusting all will be OK.

I was really, really, really ready to pout about this round of double vision. Of course it isn't what I'd hoped and prayed for, but if life were all tied up with a pretty bow on it, what fun would this journey be? If everything went down a planned route, what would motivate us? Now I pray for ease in dealing with the double vision on my wedding day, and strength to keep my light shining through the event!