Wednesday, December 14, 2011

The CMT Rollercoaster

I have continued to be M.I.A. from my blog because the last couple of months have been a struggle: physically and emotionally. I didn't really want to write a sob story or just complain so I thought it was best to stay away for a while.

Since I really crashed at the end of September, I have actually been struggling to get back to normal and can't seem to get there. I have been on this new work schedule for 2 months and I can't seem to feel less exhausted. We paused a lot of the home renovation projects so we could get some rest. I can't remember the last time I cooked a meal...unfortunately none of these things have helped much. It has been a slow recovery process and I've actually started to use my wheelchair on a regular basis when we go to any big stores like Home Depot or Bed Bath & Beyond. The pain reached an all-time high, which led to many crying/sobbing sessions, much time spent thinking about life and pondering "What is my future going to be like?" And as a person with a progressive degenerative neuropathy, it's NEVER good to go down that path.

We actually took a 2 week vacation in Brazil where my entire family was reunited for the first time in over 15 years. John and I were very excited to get away and get some much needed rest. The trip, like CMT, had many ups and downs. The absolute BEST thing about our vacation was that John proposed to me in front of my entire family. It was such an exciting moment and so special that we got to share it with my sisters and all the relatives there. I have been blessed with a wonderful family and a very supportive and loving man who will soon be my husband!!!!

The downside was that even though my CMT decided to take a break, I had a couple of different ailments that kept me in bed for most of the trip, sleeping all day and awake all night, and unable to spend quality time with family and siblings I hadn't seen in over 2 years!!!

I am so thankful for having a religion, for having faith, for believing in a higher power, but I definitely reached a point where I was just exhausted emotionally. Tired of bearing the brunt of the pain, wanting just a little break, desperate for some normalcy...and for the first time in my life I became depressed. I know many CMT patients struggle with depression because it's not easy dealing with non-stop chronic pain, but I had never experienced this myself. While I recognized what was going on with me, I couldn't get myself out of this "funk."

I think one of the main reasons I've been down is that now that we're getting married, we own our home, the next logical step is to have babies. I am so lost. I don't know what to do. I know that I want a family but I am scared. I'm scared about who's going to care for the baby when I am at my worst, I am scared about pregnancy, what if my symptoms get worse? And what if I pass on CMT to our baby? I know life will work itself out eventually but not knowing which way to go has been a bit upsetting for me. John is okay with whatever decision I make, he's happy as a two-some but he's so great with children that I want our child, I want to have a family, I want the child laughter in our home...but I watch all my "healthy" friends struggling with the craziness of being a parent, I wonder how I'll be able to do it with this tired body of mine... I know many of my CMT buddies have managed it and that's always positive reinforcement, but I still wonder...

To make a long story short, I think I'm slowly getting better but I am seeking help. John and I talked about many possible treatments and we decided that it would be best for me to go back to physical therapy, which will be starting tomorrow. I have also been stretching at home every night and I feel like it has made a difference for the better. I have NEVER been able to touch my toes and look at me now!!!!

I will also be starting yoga this weekend...a great friend from church has volunteered to come to my house and help design a program that will be helpful for me that won't be too tiring. She's going to teach me breathing techniques and exercises we can do sitting or laying down. I'm also in search of a new primary care physician so I can have a physical done and a new neurologist at the Yale Medical Center. Wish me luck!!!

Even though I have CMT to deal with, it seems that God sent a bunch of angels to watch over me...from friends who volunteer to help here and there, to a wonderful mom who comes over and fills our freezer with yummy food, to a wonderful fiance who knows what to say at the right time and helps me so much around the house, to fantastic dad who is there for us to help with whatever we need, to amazing sisters who are there to hear me out, to dish out advice and sometimes just be a shoulder to cry on (even if long distance).

I know I will find the strength to get back to be my happy self again with hopefully a little less pain. Life is full of happy moments and sad moments, to those with a medical condition or not. I am tired of being sad and of thinking too much. 

2011 has been an amazing year for us, but also a very difficult one for many reasons. I am really hoping that 2012 has a lot of exciting things in store for us.


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