26 January 2010

Today is the day....

There are days when you get your fill of your friends and family trying to tell you how to manage your disease. And if you are anything Like Me then today is your day. I know that their efforts are purely out of concern, fear, and my overall well being. I completely get that. Honestly I do. Their concern comes from the purest place. The extra effort they put in to find research and keep abreast of the latest treatment options and developments in medications...it's exhaustive. But they never stop trying. Never stop caring. Never stop pushing. Until I push back. The days when I am irritable and angry at my symptoms. When I can't find anything comparable to make you understand how this numbness or vibration feels. It's one of those true "you had to be there" type events. The days when I'm afraid and I don't want you to ease my fears. I don’t want you to tell me it will "be alright". Because at this moment, at this every second IT'S NOT ALRIGHT!

My worse moments are early in the morning. When my body is still fatigued and it vibrates like a tuning fork and my husband constantly tells me to "slow down", "you getup to fast", "you're always moving". Ok, let's stop right there. Always moving? Doesn't he know that is the thing I am fighting every single day to continue doing. The day I stop moving is the day the sleeping monster within wins. Stop moving? Not an option. Those are the days I push back. And push back with a vengeance. Those are the days I am determined to not let this disease alter my life, my behavior, my routine, my anything. The more I keep things the way they were BD the more it seems like there is no sleeping monster within.

Then there was today. I mentally planned to get an early start. And I mean early, like 3 am. Ok, needless to say that didn't work. What was waiting for me on the other side of 3 am were the twins: imbalance and vibration. Yeah, not all babies are cute. I no likey them so much. So, I slept some more. Now it's 5 am and I really need to my day moving. But apparently the twins were having a restless night and I couldn't slip by them. They were wide awake and waiting on me. In that moment, just when I was about to succumb to their antics I heard my husband's voice "you move too fast". You see, I'm a wake up hit the ground running type of chic. When I'm moving I'm moving full speed ahead. I have everything down to a timetable. If you ask me what time will I be downstairs and have breakfast on the table for the girls if I get up at 6 am I will tell you exactly 6:09 am. Everything is timed to the minute, to maximize efficiency. I can't help it. It's my analytical brain. I'm a professionally trained problem solver. It is my job to take an issue break it down into multiple "mini-tasks" then analyze the best plan of attack to reach the highest probability of a resolution. I know, too much right? I'm sorry it's genetic or something. Actually maybe not, my mom claims she doesn't know whose child I am. The difficulty in this type of thinking is that I can't break down the disease. It is greater than the sum of its parts. Or so I thought. Until I heard his voice "you move too fast". So I didn't. I first opened one eye, then the other. Then I just laid there and let myself just be for about five minutes. Then I sat up slowly placing my feet on the floor. And got up. WITHOUT THE TWINS! Apparently, the lack of sudden movement or the peace with which I began my day lulled them asleep. Whatever it was, this was one thing I choose not to analyze.

So today is the day. The day I chose to not push back but to embrace the love, care, and concern of my family. Because if your Like Me....today is the day you needed it.

25 January 2010

Like Me...

Let me tell you my stroy. A year ago I was diagnosed with Multiple Sclerosis. Not such a revelation since I started this blog as a means of support for those with MS. The story happens BD (before diagnosis). You see, I was that chic - the one from the outside that seemes to be "making it happen". The kids, the husband, the demanding career, the busy schedule. Yeah, you know her too? Like most, I experienced symptoms BD. The dizziness, blurred vision, imbalance, sensitivity to sound - sound familiar? The things that would make a normal person stop and take notice. Not me. It started around 4:30am as I began what was to be yet another long work day. At this point I was averaging between 55 and 60 hours a week. I noticed as I went to spit after brushing my teeth I made the funniest zerbert sound (is that a word? - you know what I mean) At that time I just laughed it off as dilerium at that obscene hour in the morning and went about my day. Next day -- 4:30am, same thing. Again, I laughed and went about my day. Day three -- yes, day three! Same story, a little concern creeps in but I dismiss it. Later that day while laughing with a co-worker I notice my smile doesn't feel quite the same. I go to the ladies room to look at my gorgeousness - ok, not so cute. One side of my face does not react. What the_____! (you can fill in the blank) Yes, you can scream at me that it took me three days of having the entire right side of my face being paralyzed to become a concern (in retrospect I feel the same way). But herein lies the story. I still did not consult a doctor. Because even though I knew what was happening wasn't right, I had attributed the dizziness, blurred vision, imbalance, and fatigue to being over-worked or the fact that I am anemic and had not been eating properly. The paralysis I didn't know what that was about but I had a project deadline and going to the doctor just didn't fit into my schdule. So yes, I walked around for an entire week with the right side of my face completely paralyzed. I just covered my mouth when I spoke or didn't look people directly in the eye. My husband didn't even know. Because I had work to do, I would worry about me later. Thankfully the paralysis was temporary and I finally did go to the doctor. Who also infomred me that I was crazy to walk around for a week with a paralyzed face. The rest, you know -- tests, MRI's, consultations, diagnosis. Fast forward to now....why did I create this blog? Because I know there are other stiletto clad fashionista, go-getters out there LIKE ME. There is an exhaustive amount of information out there in regards to MS, treatment options, research and diagnosis. If you are in search of that type of information check out some of my links, but this is not the blog for that. I'm not a doctor, researcher nor do I have any experience in the medical field. I am a wife, mother, and career woman making it happen, similar to other women Like Me. Yes, I was diagnosed with MS. But I am not MS. My neurologist told me at the time of diagnos that the prognosis they used to give newly diagnosed patients was that within ten years they would be disabled. And to be honest, that is all I can remember him saying during that initial conversation. In my mind it went sorta like this "You have Multiple Sclerosis, womp, womp, womp, womp (like Charlie Brown's teacher) womp , womp, womp, you may be disabled....screeecchhhh - put on the brakes! (yes I think/type in sound effects) That is when I received clarification on that statement. Bottom line, whether that is or is not the prognosis, #1 I'm too cute to be disabled :) and #2 if I only have ten years living this quality of life as I know it, then it's time to make some changes. Because if I only have ten years left this is going to be the PERFECT 10! So, join the journey with me. This blog is for all of the women out there who have MS but are not MS. The women who are still looking to "make it happen" but maybe with a more realistic balance. For the women who are not consumed with letting MS define their lives but acknowledge we may need to make a few alterations to enhance our lives. It's like the perfect little black dress. It fits amazing but if it was just a little tighter right here it would be oh, that much better. So let's consider MS your little black dress and let's consider this blog your run into the city to see that seamstress on the corner of destiny and courage (fill in the blanks with your words of inspiration). Because I'm trying to rock my little black dress and matching leopard print stilettos for as long as I can. And, if you're reading this blog then you're...just LIKE ME!