Sunday, October 21, 2012

"Bernadette" Screening at NYC Indie Film Fest

Yours truly, Bernadette, and Josh Taub
Bernadette Scarduzio is a fellow CMT'er who has made it her mission to raise awareness about CMT. "Bernadette" is a film that offers the world a view into the challenges and difficulties of living with Charcot-Marie-Tooth disease. Filmed over four years, audiences are invited to join Bernadette’s journey and her transformation from patient to advocate. Bernadette and filmmaker Josh Taub intend to make CMT “a household word,” elevating the cause to a national and international level, hopefully paving the way for more research funding and ultimately a cure.

The movie was screened at the NYC Indie Film Fest today and I was able to get a handful of tickets while I was still in Brazil. I couldn't wait to catch up with Bernadette again and also, finally meet my dear Fab Fiver Esther.

I first met Bern over 2 years ago, when I stumbled upon a trailer for her movie randomly at 3am one night I couldn't sleep (story of my life!). Here's what I wrote about it then:

My dad, my hubby, Elke, Veronica, and Anthony
I was very lucky to have a great group of supporters come watch the movie with me. Since I have been crying at the drop of a hat lately, I knew I needed and wanted to be surrounded by some of my closest family and friends.

Movie Poster

I absolutely LOVED the movie!!!!!!!!!!!! I cannot wait to be able to show it to everyone I know. Bernadette's story is beautifully told. She is just the BOMB! She made me cry (75% of the time! LOL), she made me laugh, and she also told my story. It soooo resonated with me and my friends were so grateful to have seen it and to really get what I've been talking about this whole time. This movie is really going to do wonders for our community: to educate doctors, family and friends. It will be great to not have to deal with "the biggest disease no one has ever heard of."

And among the many highlights of today, at the top of my list was meeting Esther!!! We have known each other for a while now and I feel like I know so much about her and vice versa. Even though we don't live that far away from one another, it just had not worked out for us to meet up yet. Unfortunately, we didn't have much time to sit and chat because there was so much going on, but just the little amount of time we had made me feel like I have known her my entire life!!! Esther - it was truly a pleasure to meet you and Adiel...I already can't wait for our next meeting and we need a lot more time next time!!!

Me and my girls - I look a little too excited in this pic, but oh well!

Esther and I right after the movie...can you tell I've been crying?

Esther and I with Bernadette

Esther and I with Allison Moore, the Founder and President of the Hereditary Neuropathy Foundation

Today was a long and tiring day but so worth it! I am SOOOO happy! And this movie has definitely made me want to do even more to help spread CMT awareness!!! Let's all do our part :)

Wednesday, October 17, 2012


Thursday, October 11, 2012

When Things Were Simpler...

In our society, progress is something that has propelled us onto bigger, better and easier things. Being an 80's child, I remember when things were a lot simpler...before cell phones, computers, iPads, wifi, etc. It was a simpler time when kids were kids longer, when we played outside until our moms called us in for dinner, when we dropped by friends and family's houses without having to call first, when we rode our bikes without helmets...I love and am totally addicted to the comforts of modern life, but there are times when I miss when things were less complicated.
When things were really simple...

When things were simpler, I was just a clumsy girl who fell a lot but I walked with no problems, I wore shoes when I felt like it, I danced to my favorite bands all night long and I didn't have a care in the world beyond my sisters annoying me or wanting to borrow my clothes all the time. When things were simpler, life was uncomplicated, health wasn't something I particularly thought of very often, because I had it.

It's been almost eight years since my CMT diagnosis and easily over ten since my symptoms started to show and really bother me. Eight years isn't exactly a long time in the big scheme of things: it's two World Cups, two presidential terms, two Olympic games, it's going through high school and college...but in the scheme of my life, eight years has changed things in ways I would have never expected.

In my personal life, my sisters moved back to Brazil, I graduated college, met and married my best friend, moved from NJ to CT, became a first time homeowner, and blossomed into an adult. In my CMT life, things changed drastically. I went from ignoring my diagnosis for a couple of years to a hot pursuit of answers and medical help. I had two reconstructive surgeries on my feet and another minor surgery in search of pain relief. I've met a slew of doctors, surgeons, and neurologists...some of which helped me immensely and others who upset me more than they'll ever know for things said without thinking. I progressed from an active and outgoing girl who loved to dance to a girl who doesn't go out often without fully analyzing where, when, how long, how far, who is going and if there is seating. I went from avoiding medication at all costs to not being able to deal with my pain without them. I went from regular walking to less and less walking, to the wheelchair and now to the scooter.

Life with CMT is full of ups and downs, both physically and emotionally. Just as you are getting comfortable with a change in your condition, things change without your noticing and you have to adjust your mindset. Some adjustments are easier to accept than others. Sometimes it feels like you're in a constant state of mourning...mourning things you could do that you no longer can, mourning the person you used to be and adjusting to who you are becoming. Even mourning the future...the dreaded how-will-I-be-in-five-years question. It's never a good idea to dwell on these changes too brings on too many feelings, and most of them are not the rainbow-filled, peaches and cream kind. Sometimes it is good to acknowledge those feelings though, throw a heck of a pity party for yourself, and then move on.

There are so many things I miss...things that I'm sure most people take for granted. Taking a walk at the beach, walking the mall, dancing the night away...But I have also realized that I am no longer the same person. I am more mature, I appreciate the little things in life, I am grateful for the days when life is good and CMT is taking a hike, I sympathize with the pain of others in a way I never could before, I am so grateful for the people in my life who are such a strong support system, and I am thankful to God, that even though He gave me an obstacle in life, it's one I can endure and He gave me as many cushions as He probably could without taking away the lesson.

When things started to get complicated...
I think CMT'ers are much stronger people than they get credit for. We are all struggling with this invisible condition that many people aren't even aware of and we are trying to do it all with a smile on our faces. It's a constant battle between body and mind...our body wants to give up and our minds are refusing to let it. Progress hasn't been a friend to my body, but I pray that this same progress leads researchers and scientists towards a treatment that will help us all.

Monday, October 8, 2012

Scootin' On...

Posing with my new ride!
It's no secret that my life has changed quite a bit over the last couple of years and due to my CMT progression I have been a much more avid user of my wheelchair. The wheelchair is great because it allows me to do so much more, but it has a few drawbacks. It's very tiring for whoever is pushing me around (John got calluses in his hands from pushing me around for an entire weekend when we went to Newport, RI two years ago), I don't feel very "free" in it because I am taken places instead of going where I want or stopping when I want, and I feel like I have no control. Sometimes, in a crowd, my "pusher" may not realize how close they get to people in front of me and that gets me a bit anxious.

I have been wanting a scooter for a while to have the freedom to go at my own pace and to allow John or my dad to enjoy themselves more when we're on an outing. A friend of ours was kind enough to give me a power chair a couple of years ago but it's really bulky and heavy - we need at least 2 people to be able to load it into the car.

I became a member of the MDA a while back and recently heard of their loan closet. While I was away in Brazil visiting my sisters, I emailed my MDA rep asking if they had a scooter in their closet that I could take and luckily they did!!! The process was extremely easy! The supply store got in touch with me once I got back and I just picked it up last week. It's nice, light, fits in my trunk, can be lifted by one person, and it's sassy like its owner - it's a beautiful bright red :)

We were away last Thursday and Friday at a friend's wedding in Massachusetts and we heard of Old Sturbridge Village, which was only 5 minutes away from where we were staying, and what a great tour it would be. It's a living museum located in Sturbridge, MA, which re-creates life in rural New England during the 1790's through 1830's. I highly recommend it. And I was super excited to take my scooter for the first ride...I cannot even put into words how happy I am to have it!!!! It was wonderful! I felt so independent being able to steer myself and honestly, it's also a lot cooler than the wheelchair. Somehow it made me feel less "disabled" if that makes any are some pics of my riding around this beautiful place...

Loving life on my scooter!!!

Saturday, September 22, 2012

CMT and Pain

There are many different symptoms that identify CMT. Not only is our condition the most commonly inherited neuropathy, but it also manifests itself differently from patient to patient. One of these symptoms that I would like to discuss, which is not exactly accepted by all doctors, is pain.

According to Wikipedia, pain is an unpleasant feeling often caused by intense or damaging stimuli, such as stubbing a toe, burning a finger, or putting alcohol on a cut. The International Association for the Study of Pain's widely used definition states: "Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage."

Pain is what led me to my Charcot-Marie-Tooth diagnosis and my pain has evolved over the years. Back then, I had pain on the balls of my feet because of my calluses and felt pain with each step. Then I began having a lot of "charley horses," pain in my calves, which I still have to this day. My most challenging form of pain wouldn't make its appearance until years later - my thighs. It's a strange form of pain, hard to describe. It feels like pressure, as if there is something permanently suffocating my thighs. This last type has become my biggest concern as it just refuses to go away, ever! It's my companion 24 hours a day...always present in my life. As I have described in earlier posts, I have started to take medication and do therapy that help give me some relief. However, many doctors still do not accept the idea that CMT causes pain. They try to tell you that you must have another unknown condition. As if one invisible disease wasn't enough! 

It can be extremely frustrating to try to persuade a medical professional of a symptom you have that is being caused by an actual diagnosis you have. The more and more I speak to different CMT'ers throughtout the world, I am convinced that pain indeed is a symptom of CMT. It would be great if we and the professionals who can help us were on the same page.

I wanted to write this post because I recently found out about an organization that very much cares about pain and is doing everything it can to help me and people like me. One of my dearest friends from church and I have always had a very special bond. She has a neurological condition and also has feet and pain problems. I always say that she's my body double! She recently attended a conference organized by the International Association for the Study of Pain (IASP), mentioned in Wikipedia quote above. She returned from this event extremely excited because this is a very serious organization, highly respected in the science world that focuses on research about pain. She told me that there were over 7,700 individuals from all over the world at this conference; discussing updates, presenting new ideas, and exchanging information. All of these professionals had one goal in mind: helping to alleviate pain, physical or emotional.

Over 1,000 professionals during one of the sessions.

I just wanted to share this information because it gave me a lot of hope and maybe it can do the same for you. It's great to know that there are thousands of people out there looking for a way to help ease our pain and suffering, and not only professionals in the CMT field. I am not holding my breath that there will be a cure in my lifetime, but I am very hopeful that I will be able to live happier, less pain-filled days sometime in my future.

Wednesday, September 19, 2012

EXTRA! EXTRA! Read All About It!!!

Today is a very exciting day for our collaborative CMT blog: Clicks for CMT. The Hereditary Neuropathy Foundation wrote a great article about it (Kudos to Melissa for getting this interview). To read the article, please click HERE. It's so exciting that our Fab Five blog is getting this exposure!! 

We have had over 3,500 views this past month alone!!!! When the 5 of us set out to do this, we definitely did not imagine that it would get so much momentum so quickly!!!!

Keep up the wonderful work girls!!!!

Sunday, September 16, 2012

Rolling Around

As we are halfway through CMT Awareness Month, I have been thinking about possible topics to write about and realized I haven't touched on a subject that has been part of my life for over a year or may be because I am still in denial, skirting the issue, ignoring, or just not talking about it unless necessary. It's not as if I'm ashamed, but when I think about it, it's a bit of a different reality to accept.

What I am talking about is how much more dependent I have become on using a wheelchair. My ability to walk or stand has gotten so limited that I don't venture out anymore without it. Last year, I purchased a CR-V just so I could have the wheelchair in the trunk of my car at all times. It has become a constant support and major assistance for me whenever I go somewhere that requires any browsing, walking or standing for more than 10 minutes.

While I am more than happy to be pushed around and am very glad that I get to do more than I would if I was on my own two feet, at the same time, I have some strange feelings about it. I try not to focus on the negatives: how young I am, how much more I was able to do not even 5 years ago, how I will manage pushing a stroller on my wheelchair when the time comes, and whether my future/inexistent kid will be embarrassed that his/her mama is on a chair...I know these are silly thoughts but sometimes they do pop into my head. I guess accepting the chair as part of my reality is a bit bittersweet ... when I was younger, this is definitely not how I imagined my 31-year-old self.

I also get annoyed at times with random strangers, all too eager to stare at me to try to figure out what's wrong. I can see their eyes going from head to toe looking for the reason I am bound to my chair and then looking at me a bit perplexed when I stand up to take a picture. I wonder if I am the only young person they've ever seen in that condition.

My dad and John took turns pushing me around in Newport, RI

I am thankful to my husband and my parents for always being more than happy to push me around. No matter how many times we need to get in and out of the car, John calmly assembles and disassembles the chair for me - I could not have asked for a better guy. I am also very grateful for my faith because without it, I may feel that things were unfair and do the "poor me" routine.

I also realize that I am lucky not to need the chair permanently...that I DO get to get up when so many others cannot...I think the process of acceptance is a long one, it doesn't happen overnight. Some days I am perfectly fine and others I am more emotional about it...I guess I just better keep on rolling on and enjoying the opportunity to enjoy this world on two wheels and a cushy seat...

Monday, September 10, 2012

CMT's Fab Five

Long ago when I started my blog just to keep my family updated, I never imagined how far it would take me.   I have met some amazing individuals and I am so grateful to have them as part of my life. My very first CMT-BFF whom I met, is my dear Jessica of In The Pursuit of Pretty Shoes. Jess actually came to the hospital during my first surgery and that has been the beginning of a beautiful friendship I am planning to have for life! She has stayed at my house several weekends, we have visited her in NYC, she traveled from Colorado for our wedding reception and she was the person who I talked to at the height of feeling down last November/December who helped me to see the light and start to feel better about everything.

CMT friends are uber special even though you may have never met them in person. CMT friends know and understand what you're going through. If I need to talk about my issues to a "regular" friend, even though they are very nice and understanding, I never feel truly comforted and end up wishing I hadn't "complained" so much. These last two years have shown me that I should rely more on these new cyber friends, who are such a real part of my life, and who are always willing to lend an ear and talk you through difficult times and are so happy to share in your happy ones.

I would love to introduce you to the other less known "Fab Five." We have all become great friends who have more in common than just a silly-named disease. We are young(ish...LOL), love life, always try to keep a positive attitude despite our difficulties, have very supportive families, and have shared passion for TV shows such as Grey's Anatomy. We have many similarities in our personal lives, yet our CMT symptoms could not be more different.

From top left: Melissa, Me, Esther, Nicole, and Lenka
Lenka lives in California and has 2 beautiful children. She interviewed me two years ago for CMT Awareness week podcast (listen HERE) and we've always kept in touch since. Nic lives in Canada, is addicted to the same TV shows I am and has 2 beautiful boys. She was kind enough to talk to me for almost 2 hours to help me with an issue and some CMT related questions I had. Melissa found my blog and read the entire thing in one night  (Insane!), is a super mama of 4 and lives in Utah. We have talked over the phone and several chats and she motivated me into looking at starting a support group in CT. Esther is a mom of 2 with a new baby on the way and lives the closest to me in NYC. It's mind-boggling we haven't met despite our best attempts. It will hopefully happen very soon.

These 4 ladies have helped me more than they can imagine and I am so grateful to each and every one of them. Someone PLEASE forward this post to Ellen so she can orchestrate a surprise meeting so we can become an overnight sensation like Sophia Grace and Rosie!!!! Seriously, I have never met any of them and it would be amazing to spend a few days together blabbing away. It might happen next summer, as Nic plans her family trip to the Big Apple.

Lenka had an amazing idea to do a joint blog where we can either re-post some of our entries or write original material in an attempt to raise more awareness for CMT. You can check it out here: Clicks for CMT: Bloggers Raising Awareness.

You can find all the bloggers and their sites here:
Melissa: My Life With CMT
Lenka: Lenkaland
Nicole: Nattering Nic
Esther: Contemporary Mom of Two

Friday, September 7, 2012

GRRRRRR Insurance and YAYYYY Sisters

Last night I got the letter I have been expecting...not surprisingly, my health insurance DENIED my request for more physical therapy. Beyond frustrating! They refuse to listen to the fact that we are trying to treat CMT and keep it at bay for as long as possible. They are stuck on my feet and keep saying that my feet are not showing improvement. No kidding, Sherlock! I have been treating MY LEGS, for their pain and feet are what they are and are actually not giving me too many problems. Is that so difficult to comprehend? Now I have to deal with the whole appeal process when I get back home?

Get back home? Where in the world is Michele, you might ask? I am in Brazil, hanging out with my favorite peepz in this whole wide world, my thunder buddies, my two sisters...Kalila and Milena. So I will try to forget this annoyance and enjoy my time with them while it lasts and re-charge my batteries so I can kick some insurance butt when I get home!!

Tuesday, September 4, 2012

Dusting Off Blog in Time for CMT Awareness Month

Hello there! So I am finally dusting off my blog and cleaning the spiderwebs after a 3-month summer hiatus. It's not that I completely forgot about the blog, in fact, I had tons of ideas, but summertime got the best of me and I just never seemed to find the time to put them down on paper, I mean, web.

I am so thrilled that we are celebrating another CMT Awareness Month and I am hoping to do a bit more than I did last year, when I was at my all-time worst. I plan to dedicate another entry to awareness month and do more of an update on this one.

It's been a summer of ups, downs, discovering what works for me and what doesn't. The medication really did help me quite a bit but I finally realized the importance of another piece of my puzzle. The medication alone cannot do it, I need to take the right meds alongside consistent physical therapy. I have never felt more energized or stronger, like I was finally taking charge of my health and not allowing CMT to put me down as it wished. With the help of physical therapy and pool therapy, I finally felt like I had some control over my body.

I started everything slowly and built up my exercises on a weekly basis. Some weeks we didn't get it right and overdid them unintentionally, which would set me back a few days. I started working out my arms too, in hopes that I could make them stronger and get there before CMT got to them. It was empowering for me, as I watched muscles develop in areas of my body where there was only flab before. At the peak of feeling well, we had our wedding reception and I was able to dance the night away, a feat I hadn't been able to do in years. In the midst of feeling so well, I started to sell items on eBay in the hopes of making some extra cash easily from my home. It's been fun and exciting to sell items online and feel like I could contribute financially, however small the help was.

Physical therapy can be a bit annoying to do, almost feels like homework that you wanna skip, and I have gotten to the point that I was honestly looking forward to my appointments. Then, my insurance company butted in and tried making things difficult for me. Since I was feeling so good and my pain level had decreased, they no longer felt it was necessary for me to continue. I had no words !!! I just couldn't believe what I was reading. Didn't they understand I only felt so good because of all the work I was putting in and that soon, I'd go back to normal? I tried getting a new prescription, had several discussions with the insurance company and therapy place and only got an additional 4 visits. In the meantime, my pain escalated again to much higher numbers than in the past few months, I lost the muscle mass I'd built and my energy level dropped. Not to mention that when I went back for those 4 appointments, I was no longer able to do as much or as many repetitions. CMT seems to play a funny trick on your body - it takes you so long to build up and yet, it takes no time at all to lose the time and work you put it.

My therapist has submitted a new request for approval and included a letter from my neurologist. Now I am just anxiously waiting for the results. I know I can do some of the exercises from home, but it's hard to get motivated and stay disciplined during that entire hour, while trying to ignore my cell, the TV, Facebook, eBay....etc. If they do not approve my next request, I am going to look into an out-of-pocket maintenance program because I have finally realized that I MUST keep up my workouts, however light and simple, for my own well-being and to keep the CMT-bugs away.

I have heard from others that this is not so uncommon. The insurance companies will pay to help you get better but not pay to keep you better. Maintenance is not something they want to be responsible for, which can be infuriating for a CMT patient. Since our dear condition does not have a cure or treatment, therapy seems to be the best way to slow the progression. Thankfully, I am fortunate enough that I can afford to do a maintenance program, but what about those who cannot?

Tuesday, June 5, 2012

Publicity from CMT at the Tea

Hi y'all,

I'm always very happy to see news about CMT anywhere...I just continue to hope that the more we hear of it, the sooner we'll have doctors, family and friends understanding more about it and our daily struggles. I just never thought little old me would ever make it onto a newspaper helping to bring awareness to our cause so I'm obviously over the moon!!!!

I am still so grateful that my old firm supported the CMTA at this event and exposed CMT to a new audience as well as helping us to fundraise. 


Sunday, June 3, 2012

Video of Our 1st CMT Support Group Speaker fancy are we getting!!!! We just had our 2nd support group meeting last week and one of our members volunteered to record the lecture and post it online for everyone to see who may have missed the meeting.

This is Dr. Daniel DiCapua, Assistant Professor of Neurology at Yale School of Medicine providing an overview of Charcot-Marie-Tooth disease. I had my first appointment with him earlier this year and found him to be extremely knowledgeable and really great to explain and discuss CMT with. I am so happy that he agreed to come in to be our first presenter. To view the video, please click HERE.

FINALLY...Something's Working!!!

As someone who has tried such a multitude of medications, you're always a bit skeptical about starting anything new...and the new prescriptions I got didn't exactly start to work right away, as the doc said it would take a couple of weeks, but it was driving me insane to deal with so much pain...and with that much pain comes tears, emotions, etc etc...

However, they FINALLY kicked in about 10 days ago and I have been feeling GREAT!!! My pain is down to a much more manageable level and I'm even waking up pretty pain-free, compared to the mornings when I'm writhing in bed with pain and it takes me a while to get up. I can't even begin to explain how grateful and relieved I am!!!

Unfortunately, my insurance did not approve the medication for the chronic fatigue (something about it not being FDA approved), so I will have to wait until my follow up appointment next week to see if we could try something else to give me a boost at the beginning of the day...I am just praying that these meds LAST! I could use feeling a little normal for a while :)

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!!!!

Friday, April 27, 2012

A New Life...

I feel like it's been ages since I worked, when in reality, it has only been three weeks. I really hit the ground running with projects around the house, planning our summer wedding reception, cooking a lot more, doing physical and hydro therapy twice a week, and returning to my activities at church.

It was definitely an easy adjustment into this new life...I am still tired and in pain, but thankfully my pain levels have decreased and I've been able to take one less pain pill a day...The therapy sessions have been more challenging and I feel myself getting stronger. The one major difference is that I can manage to do these things, even though I still get tired easily, but now I can rest for an hour or so between them. Before, I'd work during the day, come home tired, and have to pack it all in the evening hours, leading to my zombie/drained lifestyle of the last few months.

I am really grateful that I can stay home now and that I can focus on my health. Thankfully, the sadness of leaving work has passed and I have started to embrace the new and positive improvements in my day to day life. They say that when a door closes, another I'm really trying to enjoy the new door that has opened in my life...I feel like the last chapter may have been a bit bleak, but this new one has certainly turned into:

CMT in the News Again...

....thanks to Bernadette!!!!

Click here to view article:

Monday, April 16, 2012

Happy 2nd Anniversary!!!!

Time flies...I can't believe it's been 2 years since my first reconstructive surgery (and my first surgery EVER!)...So much has happened since. I actually got a little emotional re-reading this entry:

It was almost like I was reading someone else's story...I am really grateful for that first surgery. It turns out it was the best of the three I had. My left foot really is the best compared to my right foot, which I still struggle with a pesky callus that refuses to completely go away.

Since then, I've worked and stopped working, got a house, got married, had 2 more surgeries, got braces, got to meet lots of new CMT friends, returned to physical therapy full-time, started pool therapy...and the list goes on and on. I am happy to celebrate this date and how far I've come since that time. Maybe I should treat myself to a celebratory cupcake today :)

Sunday, April 8, 2012

End of a Chapter

This was a very bittersweet week for me. After months of trying to delay the inevitable and struggling to maintain work/life balance (and by that I mean going to work and getting through the day and coming home to veg out in bed and do absolutely nothing because of exhaustion and pain) I finally gave my resignation notice at work 3 weeks ago. It was certainly not an easy decision to make and I really struggled with letting that part of my life go. As much as we dread going to work sometimes, it keeps us active, in contact with other people, not to mention the financial benefits to be able to live more freely and do things you enjoy like going out to eat and traveling. 

John and I just came to the conclusion that it is just not worth it for me to struggle so much to work, when I have just been so miserable at home and unable to do anything else (i.e. take care of the home, cook, go to church, on and on and on). Thankfully, as if the angels from above knew that this would be my last week, they promptly managed to get me tickets to a live taping of the OPRAH SHOW IN NYC!!!!!! My mom and I attended Oprah's LifeClass at the Radio City Music Hall on Monday and it was a dream come true! Not only did we get to enjoy Oprah, but her main guest was Deepak Chopra and the discussion was about spirituality (cue the angels singing!!!). It was just unbelievable!!! Beyond words..I have been a die-hard fan for years and always dreamed of going to a show. The energy in the auditorium of 5,000+ people was out of this world. So you can say Monday was not a day I gave much thought about my impending major life change.

Tuesday was another extremely exciting day. I've been going back and forth with a friend, who became a professional wedding photographer a couple years ago. Since we got married on New Year's Eve and it was freezing out, we made plans to have a photoshoot in our wedding day outfits when the weather got nicer. Then again, out of nowhere, my friend contacts me that she has heard about this amazing daffodil field nearby that she was just dying to go see and that she'd shoot John and I as a FREEBIE! Say no had me at daffodil field!!!! The only catch is that I had to leave work early so I could get my hair/nails/makeup done...I wasn't going to even attempt to do any of those myself. We went to one of the most glorious places I've seen!!! Out of a storybook...daffodils everywhere, lake, windmill, beautiful fields, barn, well...I mean, a photoholic's DREAM! Here's just a quick preview that she sent me that night that has me DYING to see the rest...needless to say, Tuesday breezed by and I gave no though to last day of work being Thursday.

On Wednesday, it started to hit me a bit, but it really hit me like a wall at night when I decided to write some Thank You cards to some people who have been very kind to me...(cue the waterworks). Poor John came home from doing a double at work to find me sobbing, the reality of it all really hit me...I couldn't even speak. So Thursday at work, I pretty much cried all day. I asked them to do away with the usual goodbyes from the firm - no breakfast needed - or my guests would end up consoling me. I needed to take a few breaks and go hide out in the bathroom but I survived. I received a really nice outpouring of support from people I would have never expected and felt truly appreciated by those I worked with. There's a possibility I may be able to work with them from home in the future, but for now I'm just going to focus on trying to feel better and going back to doing some activities I love.

I certainly don't want people to feel pity for me or "jealous" of the fact I get to stay home. It almost feels like if I had a baby with me, this would have been a much more acceptable decision to make. Since there is no baby yet, I just want to focus on getting stronger...I will be going to physical therapy and pool therapy twice a week, going to look into going back to the nursing home to visit my peeps (I feel more at home there among the canes and wheelchairs), taking dad to see a live taping of America's Got Talent this week, going to the Orchid Show at the New York Botanical Garden next week...sure, I'll be doing some of these things from my wheelchair, but it'll be nice to change the pace of life.

As sad as it is to dwell on the reality of why I needed to stop working, I think I've cried that all out now. I just need to focus on the future and on the reason why I did this to begin with: to have a better quality of life. I'm looking forward to enjoying this time off and hopefully also starting to feel much better physically and emotionally. The end of a chapter, but the beginning of another :)

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...

Monday, February 20, 2012

Understand Someone With Chronic Pain

This is by far the BEST article to describe Chronic Pain and how we feel. This is a great tool to share with family and friends to help them better understand: Understand Someone With Chronic Pain

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand: These are some things that can help you to understand, and help, people who suffer from, often debilitating, chronic pain.

1. Remember that being sick doesn't mean that the sufferer is no longer a human being. Often the chronic pain sufferer spends most of their day in considerable pain and exhaustion. If you visit or live with them, they may not seem like much fun to be with, but they are still as aware as you of everything and have needs just like you, but they're more or less stuck inside a body with constant issues over which they have little or no control. Just like you, they still worry about studies, work, family, friends, and most of the time, would like to hear you talk about your interests and happenings, too.

2. Learn the code. Chronic pain sufferers will often talk differently from people free from constant pain. Living with fatigue, irritability, and sadness at their plight, many sufferers learn to bottle up their feelings and use code to cover up the level of pain. There's also a number scale for pain that doctors teach chronic pain patients early in their treatment. By habit, they may describe their pain on a scale of 1 to 10 where 1 is "no pain at all, feel wonderful" and 10 is the worst pain they ever had in their life. Their pain level ten may be outside your experience, it depends on what you've been through in life.
  • Don't assume that just because the chronic pain sufferer grits their teeth and says that they're fine that they are. They could very well be covering up, fed up with the lack of understanding in others as to the constancy of their pain.
  • Accept that words may be inadequate to describe how the sufferer is truly feeling. Think about a time when you experienced pain, like a broken leg, or a very nasty virus that pounded at your head and every muscle in your body. And multiply that and think of it being constant, every day, without respite. It's hard to find the words for that sort of pain.
3. Recognize the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but chronic pain sufferers have often been sick for years and their pain-filled lives have caused them to adopt coping mechanisms that are not necessarily reflecting the real level of pain they're in. They don't want to be miserable all the time but they often have to work hard at not being miserable. So, if you're talking to them, and they sound happy, it means they are happy, that's all. It doesn't mean that they're not in a lot of pain, or that they're not extremely tired, or that they're getting better, and so forth.
  • Respect that the person who is in pain is trying their best. Avoid saying, "Oh, you're sounding better!" or "But you look so healthy!" They are merely coping; sounding happy and trying to look normal. If you want to comment on that, it's certainly welcomed.
  • Look for the signs of pain over the words, so that you can read between the lines. Things that will belie the chipper attitude include restlessness, shifting about, grimacing when they think you're not noticing, sweating, sleep disturbance, teeth grinding, poor concentration, decreased activity, and perhaps even writing down suicidal thoughts or language
4. Listen. The previous two steps made it clear that chronic pain sufferers can speak in code or make lighter of their pain than is the reality. The next best thing that you can do is to listen to them properly, and to make it clear that you both want to hear what they have to say and that you really have heard it. Use your listening skills to decode what they're hiding or minimizing.

5. Understand and respect the chronic pain sufferer's physical limitations. Being able to stand up for ten minutes doesn't necessarily mean that the sufferer can stand up for twenty minutes, or an hour, or give you a repeat performance whenever. Just because the person managed to stand up for thirty minutes yesterday doesn't imply that they will be able to do the same today. With a lot of diseases, a person may exhibit obvious signs of immobility, such as paralysis, or total immobilization due to weakness, etc. With chronic pain however, it is confusing to both the sufferer and the onlooker, and their ability to cope with movement can be like a yo-yo. The sufferer may not know, from day-to-day, how they are going to feel when they wake up and each day has to be taken as it comes. In many cases, they don't know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
  • Insert "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, to this step, as the curtailment on a sufferer's ability to be responsive applies to everything that you'd expect a person in good health to be able to do. That's what chronic pain does to its sufferers.
6. Leave your "pep talk" mode for your kids and your gym buddies. Realizing that chronic pain is variable, keep in mind that pep talk can be aggravating and demoralizing for the chronic pain sufferer. As already noted, it's quite possible (for many, it's common) that one day they're able to walk to the park and back, while the next day they'll have trouble getting to the next room. Therefore, it's vital that you don't fall into the trap of saying: "But you did it before!" or "Oh, come on, I know you can do this!" If you want them to do something, then ask if they can and respect their answer.
  • Get over the need to give platitudes about the value of exercising and fresh air. For a chronic pain sufferer, "getting out and doing things" does not make the pain vanish and can often exacerbate the problems. Bear in mind that you don't know what they go through or how they suffer in their own private time. Telling them that they need to exercise, or do some things to "get their mind off of it", may frustrate them to tears, and is not correct advice, especially if you're not medically trained and haven't got a clue. If they were capable of doing some things any or all of the time, they would.
  • Remember that chronic pain sufferers are constantly working with doctors and striving to improve and do the right things for their illness. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain; not to mention the recovery time, which can be intense. You can't always read it on their face or in their body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
7. Never use throwaway lines. Assuming you know best by making such statements as "Ah well, that's life, you'll just have to deal with it", or "You'll get over it eventually. Until then, you'll just have to do your best", or worst of all, "Well, you look well enough", etc., are lines that might make you feel done and dusted with the topic but they are both a form of distancing yourself from the person and making the sufferer feel worse and out of hope. Psychologist Mark Grant suggests that you throw lifelines rather than throwaway lines, by saying something like: "So how have you survived?"
  • Admit it when you don't have answers. Don't paper over your ignorance with platitudes or bold allegations not based on fact. There is no harm in saying "I don't know" and then offering to find things out.
 8. Check your own patience. If you're impatient and want them to "just get on with it", you risk laying a guilt trip on the person who is suffering from pain and undermining their determination to cope. They probably have the will to comply with your requests to go out and about with them but have neither the strength nor the coping capacity as a result of the pain.
  • A chronic pain sufferer may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.
  • Be very understanding if the chronic pain sufferer says they have to sit down, lie down, stay in bed, or take these pills right now. It probably means that they do have no choice but to do it right now, and it can't be put off or forgotten just because they happen to be somewhere, or they're right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
9. Be sensitive when suggesting medicines or alternative treatments. Prescription drugs, over-the-counter medicines and alternative therapies can have side effects and unintended consequences. Some may not appreciate suggestions, and it's not because they don't want to get well. They may have heard of it or tried it already or some may not be ready to cope with new treatment that can create an additional burden on their already over-burdened lives. Treatments that haven't worked carry the emotional pain of failure, which in and of itself can make the person feel even lower. Of course, if there were something that cured, or even helped people with a particular form of chronic pain, then they should be made aware of it. There is worldwide networking (both on and off the Internet) between people with chronic pain. Those can be good resources. Be sensitive in how you bring it up.
  • On the other hand, never be afraid to ask them about how satisfied they are with their treatment. Mark Grant says that it is important to ask helpful questions about whether the chronic sufferer thinks their treatment is satisfactory or if they think their pain is bearable. He suggests that people rarely ask these open-ended "helpful questions" that would help the chronic sufferer to open up and really talk.
10. Don't be put off if the chronic pain sufferer seems touchy. If that's the appearance, it's probably because they are. It's not how they try to be. As a matter of fact, they try very hard to be normal. Just try to understand. They have been going through a lot. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, they do their best to cope with this, and live their lives to the best of their ability. Just accept them as they are.

11. Be helpful. The chronic pain sufferer depends a great deal on people who are not sick to support them at home or visit them when they're too sick to go out. Sometimes they need help with shopping, cooking, or cleaning. Others may need help with their kids. They may need help getting to the doctor, or to the store. You can be their link to the "normalcy" of life. You can help them keep in touch with the parts of life that they miss and desperately want to undertake again.

12. Balance your carer responsibilities. If you are living with a chronic pain sufferer or supporting such a person on a regular basis, you need to maintain balance in your life. If you don't take care of your own needs, health, and work-life balance, being around the chronic pain sufferer can bring you down even though you're probably trying hard not to be. Avoid suffering from carer burn-out by getting other people to help, taking time out, and curtailing your guilt trips. Care for this person as much as you're able but also care for yourself.