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.

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!!!!

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 so...it 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...

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

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 weakness...my 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!!

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?