Month: April 2018

1965…I was MIGHTY! MIGHTY MOUSE riding my tricycle like a bat out of hell around our little sidewalk in front of our farmhouse in Illinois. It was muggy and hot but the cool thing was that I was in charge of my life. I had a mission. I was the tour guide for all of my imaginary friends behind me. They were lined up and ready to roll. Maybe it was like being the leader of Hell’s Angels? I drove like a maniac, peddling as fast as my fat little legs could cycle. “ Keep up with me, everyone!” We don’t have time to stop. We have a deadline, people! As it turns out,  imaginary friends are the best! They love you no matter what. You can yell at them. You can totally control them…and they just obey. They are there when you need them. They don’t ask for anything in return. I had energy, I had groupies. I had my tricycle and I had speed. Let’s roll!

Then along came the ants…Damn ants. They were always in my way. I had to weave in and out in order to avoid killing an ant. I couldn’t kill a living thing so as you can imagine, they slowed us down.  I would get off of my tricycle and yell at them. They were holding up Hell’s Angels, the Macy’s Day Parade, the Presidential motorcade…come on…quit getting in my way. Of course, everyone knew the unspoken truth about what happens if you kill one ant. They have an underground network of communication telling thousands of other ants about the murder. Yes, you guessed it, the first form of social media, Facebook for Ants. With one click I was not only unfriended by millions of other ants, I was America’s Most Wanted. All Hell would break loose. So, I really had no choice but to slow down and take a detour.

And that’s what I am doing now . I’m slowing down and taking a detour. That’s what MS demands of you. You have to slow down. You have to rest. You have no choice. There is only so much energy in your tank and then you are on empty. Its such a bizarre disease in that sense. For the first time in your life, you have to allocate your energy. You have to out source. You can no longer give all that is needed because there is no more to give. It’s a deflating feeling. It feels like failure at first. But then you realize, its not failure. It’s MS.

Before I had MS, I had boundless energy.  And even when I had no more energy, I could somehow conjure up  more. In training as a resident, I had to be up for 36 hrs straight. As a young mother, I was on 24/7. As a physician, I had to be available 100% mentally and physically. And I could! Even when my body said “NO”, I said “Yes”.

Until MS slowed me down. It was the ant in my path. It was causing me to take a major detour. It was forcing me to slow down.

And that’s OK. I allocate my time and energy. I reboot. I live in the moment. I savor the slower pace on my tricycle.  I’m still Mighty Mouse, taking a detour.

 

Ok, we left off with mud and creating and all that jazz. I still salivate at the smell of wet earth. Its my Pavlovian response. When I was a little girl, probably 4 yrs old maybe 5,  I was so excited when it rained because I knew this was the essential ingredient to make my mud pies. I would wake up early and go out to my bakery ( a tiny spot behind the front bushes of our farm house in Illinois). My first patrons were always with me, Pete, my big English sheepdog and Mama Kitty, my elegant Siamese cat with crossed eyes and PMS. They would patiently wait as I concocted my masterpieces. They never ate them though, just a sniff and off they ran. But I felt validated in some quirky way, that my creations had passed the sniff test and they were ready for the oven…the early morning sunshine. So, as those heat up, let  me tell you about MS…

So, when I heard the words, ” You have MS”, I felt paralyzed. All time stood still. I could hear my heart beat pounding in my head. I had known for several months that I probably had multiple sclerosis. I had been a pediatrician for over 25 yrs at that point, so as a physician, I silently knew. I was in total denial ever since I started having severe, excruciating night time leg spasms and imploding type pain in my big toes, about 4 yrs ago. Once my fingers started going numb, I knew I needed a brain scan. That was how I was diagnosed, with classic Dawson’s fingers in my periventricular regions( classic radiologic demyelinating spots) and more demyelinating lesions in my spine. So that was my fork in the road. My river of life that I had so erroneously thought was all mapped out and my row boat that I thought I had total control over, just took a sharp turn. I had lost my paddles, my rudder and my compass at that moment.

So I have had to create a new mud pie over the last few years. The ingredients included early retirement from my job as a pediatrician (my life long passion and identity), living in the moment  ,slowing down and putting myself first ( what a selfish concept!).

So the “re-creation of me” began. Loving myself and listening to what my body needed on a daily basis became my graham cracker crust. Then there was a big old layer of gratitude, for my husband, my sons, my friends, my family and my co-workers. The next layer required me to find an essential ingredient that I didn’t even know I had in my pantry…vulnerability. Being able to tell everyone ( self included), that I was not and am not Superwoman. Realizing I am not the only cook in the kitchen. “ I need you all” was my battle cry. And to my amazement, everyone rallied and gave me what I needed. They gave me what I asked for… the essential ” ingredient” of true compassion that I didn’t even know I needed. So, I am really excited to taste this new mud pie and share it with those that helped me bake it. Its going to be gritty and real. Some days tasty, some days not.

I know I said MS sucks. And it does. It sucks that I had to give up my life long passion. It sucks that my foot is numb and I have to take Gabapentin at night to over ride the thousands of little ” bee stings” I have all over my body. It sucks that now I really am a “dumb blonde”, losing my ability to word find and converse freely at night because my brain has decided it’s had enough. But, that’s all part of this pie. Its my journey now. I have a new river to navigate. I’m learning to allow the ebb and flow of the new river I’ve found myself on to be my source of energy. I’ve found a new set of paddles . And with my dear husband and sons and family and friends as my ballasts, I’ve realized…I’m going to be OK, whatever that looks like. I plan on steering my boat as best I can, every day.

So, as I lay my new mud pie out in the warm morning rays to bake and solidify, I sit in gratitude and grace for all that I have. And I know that no matter what life brings my way, I’m going to be ok because of all of the love and support I have from my fellow pastry chefs. Bon appetit !

This is my first official blog post! Cant believe it. Where do I begin? Oh yes, with mud…

I was diagnosed 4 years ago with Multiple Sclerosis. Since the day I heard the doctor utter those words, my life has changed. So I want this blog to be about my journey since I was diagnosed but in essence, I want it to be about the “ before and after” me since being diagnosed. The “M” and the “S” are capitalized to signify Multiple Sclerosis but the title MymudpieS is about my desire, since I was a little girl, to create. And you guessed it, the first thing I remember creating was my mud pie. This mud pie was made from wet earth, rocks, sand and the occasional insect that was unintentionally added for protein. So, its not the coffee ice cream with fudge topping type. Sorry. I took you from salivation to nausea in one sentence. I thought this would be a good blog name because there can be so many metaphors for a mud pie…layers and flavors and glorious imperfections. Creating something great out of something not-so-great.

So that’s what I’m going to blog about in my weekly posts. My life with MS, my daily creations, my funny thoughts, my sad feelings, my imperfections, my “flavor” of the day. Oh and yes, I have an editor named Amber. She rules my world from her soft bed at my feet. She’s my trusty border collie and my bestie.

Thanks for finding me on the big World Wide Web!  Next post…MS sucks!