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!

Still with me?

Well hey there! (in my best southern accent) It has been a while!!


How has your new year started? Have you made an effort to savor the good and forgive the bad? I have!! My goal was to begin counting the good days, and quit focusing on my bad days. Today is day 38 or so, and its a good day! That's right, day 38 of minimal symptoms! ..and now I am knocking on wood and wincing since I've typed this out loud. Day 38.

Every night when Lee and I prepare my injection of the MS drug, I have a journal where any symptoms or issues are logged. Originally this would start off with "5 to L thigh", meaning the injection setting was at 5 and that we injected into my L thigh. You rotate 7 injection sites, and therefore track your activity....anywho...rather that starting each journal entry with the obligatory needle depth and site, I start now with "Day 38". Different perspective!! Rather than focus on the icky part of the experience, I choose to see the good.

I've taken a week to finish this blog entry. Began this on Day 33....I'm not sure why I've procrastinated, but I'm sure its because of laziness or fear. Afraid that when I say "I feel good" that it tilts the ride the other way. My prayer has been, and continues to be, "Lord, I want to show up to my wedding standing strong and seeing straight". Three weeks to go! I'm ready for day 53!!

My Myasthenia is still very present, and I can feel the symptoms when I'm tired. It's just enough to keep me sober to the fact that I must make time for rest. Plasmapheresis treatments continue taking place 3x per week. We wont tinker with this again, until after the wedding, when we will likely start a new treatment plan as well.

Thanks for checking in and asking how things are. Things are GREAT!! I have no complaints and am doing my best to enjoy each day for the joy that it is. Day 38..its a good day.

Be Blessed

Day 1, stable vision. I think its important to count the good days too! Today is the first day in a long while, that I've felt more like myself. The right blood levels are climbing, so I have more energy; Eyes are calm and seeing clearly, so I feel less confused and more balanced; Mouth and speech are normal, so I'm more inclined to eat (and talk...I'll say it); the plasma pheresis treatments are going well, so I'm not getting physically sick after each one. Day 1! Its too easy to count the negatives, and I have been lately. I've been mad and very upset about where I am, and doing the 'why me' thing. That's ok, and I know that's ok and healthy to acknowledge those feelings, but its best not to dwell. So I wont...

Myasthenia gravis moves in waves, or patients experience flares. Sometimes medicines and treatments quiet these flares, other times they can't. For me, the symptoms range from double vision, weak speech and swallow, to weakened neck, shoulder & leg muscles. My treatment/medicine is truly the plasma pheresis.

In looking back over my attempt at blogging this past year, I reflect on my original goal. First, to help me avoid dwelling on my 'condition', I wanted communicate as much as I can about Myasthenia Gravis; to make the world aware this disease is around, to share the experience, the symptoms, the emotions, the frustrations and the successes that can come with MG. Second, to actually document my reality and make communication simpler to share with family and friends. Third, to clearly explain the divine source of my strength and energy, which is so necessary to get through all of this crap! :-D (Don't worry, He's heard me say much worse). Its been a long, trying year and we hear that after 2 years of MG, the symptoms tend to stabilize. We're still waiting... and while we wait, we appreciate. You should do the same.

Before your body slows you down, make a point to slow down this holiday season. Don't get lost in the speed of the commercial holiday season. Be present! Savor each moment you have with your family and friends. Look each person in the eye while you're speaking. Looks past their eyes and into their soul. When you exchange greetings with anyone, be sincere. If you can't be sincere, be quiet and smile. Most of all, let yourself feel the blessing of life. Regardless of what your faith is, what you believe in, or what you call it, feel the blessing of having life, of having loved ones around you, of having the amazing gifts that you do, and that you're here right now experiencing another day. We are so small and yet so wildly empowered. Don't miss that.

Day 1. Today was a good day.

Thank you all for your awesome love and support this year, sincerely!
You are a blessing to me!