Thursday, March 22, 2012

CMT at the Tea

Even though the week started out rough and uncertain, it didn't take very long for me to receive an unbelievable surprise! I guess the Big Man Upstairs is really keeping an eye on me :)

I am so sad to leave my job because I work for a truly great firm with great people who really care about you. They've been working with me for a few months try to accommodate me to see if I'd have a better quality of life. One of the favorite aspects of my job is party planning and we do quite a few events throughout the year. The firm has hosted a "Women's Tea" for the last 15 years and they always spotlight a charity/organization to bring awareness to that cause and also raise some funds.

The focus is always geared towards women, so it came to me as a complete shock, when I arrived at work yesterday and my boss asked me if I'd be ok with the an organization representing CMT being highlighted at our upcoming Tea. I almost fell out of my chair!!!! The suggestion came from one of the biggest honchos at our firm and everyone thought it was an amazing idea. I am soooo touched by their beautiful gesture.

I don't hide the fact that I have CMT but I don't broadcast it either. I bring it up if I'm talking to someone and the conversation ends up going in that direction. I've worked with quite a few people there who probably have no idea that I would have anything wrong with me at all. So they have drafted a beautiful email that's going out to the firm to explain my departure and how they'd like to support CMT because it would be the best way to send me off.

Of course, I ran to get in touch with Jeana at the CMTA to see if they'd be interested and if someone would be available to come to the event in CT. Thankfully Jeana herself will be coming up (she's the person who I just talked to about a month ago about possibly starting a support group here) and I'm so excited to meet her. I'm sooo excited that this wonderful group of people will learn about CMT and about the possibility to raise some funds for research.

I'm also happy that they are sharing my story in such a beautiful way, instead of a dirty little secret that would be talked about in the hallway or the water cooler. I'm happy that if, God willing, I am able to work in the future I will have a great network of individuals to reach out to who already know the professional I am and the work that I do...

Very exciting turn of events they say, when one door closes, another door opens...

Monday, March 19, 2012

Yay and Nay!

Today is a happy and sad day for me....After MUCH deliberation and soul searching, I quit my job. Yup! I've been putting this off for months now hoping that I'd start to feel better, bounce back and continue with my regular routine. Working and doing physical therapy has taken a huge toll on my body and I've been exhausted and in a lot of pain! My bosses were super nice and of them even volunteered to have a dress down day at work to raise awareness and money for research...

As scary as it was to talk to my bosses, I have to say I'm pretty relieved it's all out in the open and that the decision has been made. I always struggle with making the decision but once that's done, I'm glad to follow through. It's sad to leave a job I really like at a great company. It's sad to think I'm only 31 and these are the cards I'm being dealt at the moment but I'm also very happy to know I won't have to deal with obligations, that I won't have to make myself get up in the mornings when the pain is too strong or call out sick. I'm happy that I'll be more rested and I'll get to do my physical therapy and pool therapy each week. I'm looking forward to being able to enjoy life a little more and not throw myself in bed to rest every day after coming home.

I'm praying that God will lead the way and that things will be ok. At least it's spring and the weather is starting to cheer up. Really hope that CMT will take a back seat in my life now that I'm accommodating it.

Tuesday, March 13, 2012


Hi Friends!!!

I feel like a HUGE slacker since I haven't been writing often, or at all. I was looking at how many entries I wrote when I first started my blog compared to now and the numbers are a little embarrassing. There has been a lot going on, lots on my mind, but just haven't had the motivation to write much. I've been struggling a lot with what decisions to make about life...some of them very permanent choices.

On a happy note, since I last wrote, I am now a happily married Mrs...our wedding was very private and special...I had the wonderful pleasure of having one of my sisters here from Brazil for my birthday...I just got tickets to go to an Oprah show early next month...I had two great conversations with two CMT buddies that I have "known" in the online world for a while...I looked into possibly starting a support group only to find out there's one already underway nearby...

On a CMT note, I have been soooo drained of energy, so constantly exhausted. I have been trying to manage going to physical therapy and hydrotherapy once a week each and finally last night I came to the realization that I just can't manage that while I'm still working. For about 5-6 weeks, I'd go to work feeling great and not be able to get out of bed on the weekends from pain and exhaustion. I'm wondering if work is really what I should be doing right now, instead of working on my health. There is no easy answer. I think I know what I should be doing...but I'm only 31...and my life now is vastly different from what I thought it would be when I was in college.

To say that I had a few difficult months physically and emotionally is an understatement but I really feel like I have bounced back. I still have my days like today...when the pain is worse and it drives me to tears because there's nothing else to do. But at the same time, the weather is changing, the sun is out, the coats can stay home and soon spring will be here. Like anything else, little by little we move away from the winter doldrums into a happy blossoming spring...just like in life. I'm really excited for what this year can possibly bring and having some major positive changes in my life. And I hope to write my thoughts a bit more again...I always enjoyed this process and the feedback...