Wednesday, May 30, 2012

CMT at the Tea ... Part 2

To read Part HERE.

I am a little behind on my blog, but I guess I'm catching up tonight. The Women's Tea took place on May 12 and it was a wonderful experience. I am so glad that I got to meet Jeana in person, who drove 6 hours from PA and spent two nights in CT; and hang out with Lynne and Ruth Ann outside of our CMT meetings. It was great to sit down with these lovely ladies and get to know more about them, their lives, and their CMT story.

Yours truly, Jeana, Ruth Ann, and Lynne
We weren't quite sure how interested the guests would be to learn more about CMT or if they'd just stop by the table, grab a tchotchke and run for their lives before we got a chance to say hello. We were pleasantly surprised when so many of the guests not only came over to our table, but stayed! They were SOOO interested in finding out more about CMT, in hearing our stories, and asked many questions. A common theme that we got was: "But you all look so normal!"....ummmmm, yes we do! Normally this phrase irritates me, but I could tell they didn't mean it in a negative way...they were really just not sure what to expect of this condition they never heard of.

Jeana had a chance to speak in front of the group and we collected some additional donations throughout the event. I was extremely grateful to have my old firm choose to highlight CMTA in my raise awareness and to truly showed me their support and that they appreciated me. I was grateful for the opportunity to meet Jeana and to hear so much about the CMTA, its programs and current definitely gave me hope that maybe something will happen in my lifetime to help those of us suffering with this condition and I feel even better that I was able to participate in a fundraiser event, however small, but it gave me a great sense of accomplishment!

CMT Support Group Meeting in CT

I think I might have failed to write about the FIRST support group meeting we had two months ago...probably because I had way too much going on (aka leaving my job) and was a bit of an emotional anybody surprised by this fact anymore?

To make a long story short, I have participated in many support group meetings in NYC and was really missing the opportunity to sit and chat with people who really understand what I go through on a daily basis. I looked it up and found out there was no group in CT and after talking to one of my CMT Cyber Buddies Melissa, who just started her own support group in Utah, she suggested I contact Jeana at the CMTA. I called Jeana about the possibility of starting a group here in CT and she had great news for me. Someone had beat me to the punch and just gone through the entire process and the first meeting was at the end of March.

Lynne - group coordinator - is fabulous! I am so glad she took the initiative to get our group together. We had a great turnout at the first meeting and it was wonderful to meet so many people who lived nearby who were going through the same thing.

I suggested using my new neurologist from Yale, Dr. Dicapua, as a speaker for one of our meetings. He came to our second meeting, which took place tonight, and did a great job...went through the basics about CMT and answered our many questions. This time it was nice to recognize everyone and see how everyone has been...we're starting to get comfortable with one another and caring about the well-being of the group. So many people came up to me after the meeting to see how I've been and I thought that was really sweet.

Our next meeting will be in July and my friend who was coming over to help me with yoga will be our speaker. Everyone loved the idea! She is already familiar with CMT and will be able to cater to our needs...I am so happy to be a part of a group again and to know that I'm expanding my CMT support group not only online, but locally as well.

Thursday, May 17, 2012

New Prescription Cocktail

Ohhh the life of a CMT'er!!! To try over and over again to find a set of medications that may help improve our quality of life, battle constant chronic pain and possibly lift us out of our chronic fatigue. I have searched high and low for different doctors, different types of doctors, new meds and I'm still searching for something that will help me - as I am sure are many people with CMT and other neuropathies.

One of my fellow pool therapy buddies recommended I go see her pain management doctor who helps her a lot and he is located in the next town over so I figured I should give it a shot. I made the appointment for yesterday and the hubs came along with me (it's always good for me to go with someone because I can NEVER remember everything I plan to say or ask).

We arrived for the 12pm appointment and weren't called in to the office until 1:30pm!!!! This is one of my BIGGEST pet peeves. What is the point of scheduling a time if you're going to keep me waiting so long? And, in case you missed it, I am going to see the doc for pain, so to leave me waiting that long is not making my body feel any better. We almost asked for the co-pay back and walked out when they finally called us in. My first impression so far was not good.

Thankfully, the doctor was very nice and helpful. I am only his THIRD CMT patient ever (Shocker!) - I am just glad at least that I wasn't the first! He listened to my entire history and we begun discussing what could possibly work and what approach I should take. At the end of our chat, we have added 4 new meds to my daily routine to start off with - well, 3 new meds and 1 vitamin. Two of the meds are for pain and one is for chronic fatigue, which is honestly the one I'm most excited to try.

I am cautiously optimistic about the possibilities and hope at least one of these will help me find some relief. The plan is to try them out for a month and go back to him for a follow up. I am crossing my fingers that I have good news then...wish me luck!

Tuesday, May 15, 2012

Possible Treatment for CMT??

Here's a link to an article I came across recently (even though this is from the end of 2010), but it's hopeful. I wonder if we can find updated information on this.

ARTICLE: Pharnext Receives Clinical Trial Authorization for a Phase II Study with the First Drug Generated by Its PleotherapyTM Technology. Read more HERE.

As we like to say in Portuguese...hope is the last to die!!!!