Reach for the Stars!!!

It's been four days since our "Slice of Hope for CMT" fundraising event and I still can't believe how much we accomplished. Our event was a complete success with a full house, delicious pizzas and dessert pies, over 50 items being raffled off and over $13,000 raised!!!! Yup! Almost three times our original goal of $5,000.

The Chief of Police, aka John's boss, also made an appearance to represent the mayor and read the proclamation declaring September 13 as Charcot-Marie-Tooth Awareness Day in Shelton!!

When I first thought of doing the event, I thought we had a lot of potential since my husband was born and raised in Shelton and we would probably get a lot of support. The final results were beyond my wildest dreams. I originally wanted to set our goal around $3,000 because I thought $5,000 might be too much. HA!!

I have a background in marketing and event planning and expected this to be a lot of work. Well, it turned out to be even more work than I thought, but the rewards were also so much sweeter. It's amazing what you can accomplish when you plan to do something like this...something for a CAUSE...something that will help others and yourself.

I have been overwhelmed by the outpouring of support, financial donations, and words of encouragement. So many people have approached us and mentioned how they never heard of CMT and how they would have never guessed I had any health issues. So many people have offered help and prayers. And so many others have simply just said what a great job we are doing at spreading the word.

As the event organizer, I knew everything that was going to happen that night, yet, I got the biggest surprise. Jeana Sweeney from the CMTA, drove up from Pennsylvania to support our event. This is the second time she drives up for a fundraiser that we're involved in and I was so grateful that she could be there to help us. To my complete shock, during our thanks and what I thought was going to be a short presentation by Jeana about CMT, she presented me with the CMTA I Am A Star Award!!! I was completely speechless. Lynne Krupa, our Support Group Facilitator, went on to read the emotional letter my sister submitted, which you can read here.

I am so thankful and honored that the CMTA chose me as their recipient. I see so many posts on Facebook and online about active CMT'ers and I can't believe they chose lil' ol' me.

I've been in "hibernation" since Saturday, pretty much just sleeping and relaxing...the event definitely took a physical toll, as much as I tried to sit whenever possible that night. I feel like we accomplished so much here in Connecticut this Awareness Month and I'm so proud of all the work we did to get there. I would encourage anyone who is interested in taking a more active role to do so. It may be taxing on our bodies but it's very fulfilling for our souls.

A Slice of Hope for CMT: Update

Our fundraiser is moving along so well and so much has happened since my first blog post about the event. Here are some of the updates that have been going on in the last few weeks:

• Governor Malloy proclaimed September CMT Awareness Month in Connecticut and Governor Christie did the same in New Jersey

  

• Our tickets are almost sold out!!! We will be done selling them all in the next couple of days
• We have received great support from the community and received lots of contributions for food and raffle prizes, we now have about 40 prizes to raffle off...gift certificates to restaurants, supermarkets, spas, gas stations, car washes, gyms, jewelry and bottles of wine
• So far, we have raised $3,500!!!! Our total goal is $5,000
• The CT media has helped us spread the word about the event and CMT. You can see the 3 interviews we did here:
  
  
  1. Shelton Herald: http://sheltonherald.com/24517/event-to-assist-shelton-resident-battling-rare-disease/
     
     
  2. WTNH: http://www.wtnh.com/news/health/raising-money-to-research-rare-disease
     
     
  3. Valley Independent Sentinel: http://valley.newhavenindependent.org/archives/entry/shelton_resident_raising_funds_awareness_of_rare_disease/

I definitely did not plan on sharing so much about our lives when we first set out to do this, but it has been a very rewarding experience. It has been great to receive support from so many people and also to be approached by so many who now know that CMT does not stand for Country Music Television!

If you would like to make a donation to support this event and CMT, you can visit this link:  http://www.cmtausa.org/url/sliceofhopeforcmt.

CMT and Yours Truly on the News

Things have been really busy around here lately!!! And busy in the best way possible :)

I did an interview today with Jocelyn Maminta, a health reporter from WTNH 8, a local TV channel. I am so grateful that my neurologist, Dr. Daniel Dicapua, was also available to do this interview with us and lend his expertise. This has been an amazing opportunity to raise awareness about CMT and discuss our "Slice of Hope" fundraiser on a much bigger forum.

To view the interview, please click here:
http://www.wtnh.com/news/health/raising-money-to-research-rare-disease#.Ug7hD_oV9zA.email

To like our Facebook page, click here:
https://www.facebook.com/ASliceOfHopeForCmt

CMT Awareness Month is going to be BIGGER and BETTER this year!!!!

Charcot-Marie-Tooth Awareness Month

It's official, Gov. Dannel Malloy has signed an Official Statement proclaiming September 2013 as Charcot-Marie-Tooth Awareness Month in the State of Connecticut. Thank you Governor for supporting our cause and giving hope to the millions of people who suffer from CMT.

 And thank you also to Governor Christie for proclaiming CMT Awareness Month in the State of New Jersey! Very exciting times for all of us CMT'ers!!

A Meeting of the CMT Chicks

I decided to write this blog for purely lazy reasons...so I wouldn't have to tell the story of my pursuit of surgeries to my husband, my parents and my sisters over and over again with all the details. I never imagined that by deciding to share my story on this public forum, that I would gain so much, especially with the people that I would eventually meet through here.

One of my very dear friends now, who is always there for me in moments of happiness and sadness, who is more involved in my life than friends who I've known for years, is the first CMT friend I made through this blog...Jessica. I am so thankful for her friendship and for having her in my life and honestly, it all happened because we were both CMT bloggers.

Jess and I on one of our first outings together...the day we met Bernadette!

Then I went on to meet four amazing women in all different parts of the US and Canada, who have also been an amazing support system and great friends. Each one of us has been doing our part in spreading the word by blogging away about our lives with CMT and all the shenanigans we get into. We started off by creating a private group on Facebook for the five of us where we could discuss things more privately, share tips and ask questions of one another. And then someone, sorry I can't remember who, came up with the wonderful idea that we should all create a joint blog: Clicks for CMT: Bloggers Raising Awareness. Our joint blog has been a great venture for us all and given us an opportunity to do more for our cause.

But I live in Connecticut, Esther is in New York (we were able to meet at the Bernadette screening in NYC), Melissa is in Utah, Lenka is in California and Nicole is in Canada. We would LOVE to have a weekend for girls' chat and to just finally meet in person when we have all shared such deep personal thoughts and feelings and really relied on one another for support.

Esther and I got a HUGE treat this week because Nicole and her family came to NYC for their summer trip. We all planned to meet at Frank Sinatra Park in Hoboken, NJ this past Wednesday. It took us all a little while to find each other, but when we did, we just had the best time!!! It's just such a great feeling when you have known someone for a few years and then you FINALLY get to hang out and chat...I could not have asked for a better afternoon! It was great to see Esther again and hear about her adorable kids and to meet Nicole and discover that she is just as wonderful and bubbly as I pictured in my head! 

Another treat was to finally meet Jay as well...after all we've read about him! I think it was great for John to meet Jay and hear about the role he plays in his family since John's is so similar in ours...

Our boys...too bad Adiel couldn't make it this time!

It was just a beautiful day ...

 

CMT may be an obstacle and there are days when you sure wish it wasn't a part of your life, but if it weren't for CMT, I would have never met these wonderful people who will always be a part of my life!! Now the goal is to meet Melissa and Lenka...soon enough, we hope.

A Slice of Hope for CMT

Thanks to my physical and pool therapies, the right medication and lots of faith and praying, I have been feeling better the past couple of months. As CMT Awareness Month quickly approaches, I felt the desire to do more this year...to plan my first fundraiser and awareness event!!! It's definitely a bit daunting to take on the responsibility but the idea has been received really well by everyone, especially the wonderful support group I'm a part of.

My husband was born and raised in the town where we live and he works. Needless to say, he knows everyone. So I thought I could take advantage of that and plan an event at our local firehouse where he's a member and ask local business to participate by donating the food and sponsoring our event. All money raised will benefit the CMTA STAR Research Program.

We have lots of ideas in the works but I wanted to share our flyer and sponsor form here...in case anyone would like to contribute. Very excited for this to be a very successful event!

LIKE us on Facebook here: https://www.facebook.com/ASliceOfHopeForCmt

Having Mountain Moving Faith

Thankfully I have been feeling much better as of late. My physical and pool therapies have helped me immensely as well as the medication I have been taking. Lately, I have been attempting to meditate a lot more and listen to positive lectures on health and power of your mind. I recently listened to a lecture by Joel Osteen that really changed my way of thinking.

I have always been a resigned individual...to a fault. I have a strong belief system in God and things happening the way they are meant to so my tendency has always been not to fight difficulties, but accept them. My mother and plenty of other close friends and family have been telling me to focus on positive thinking and trying to condition myself to see CMT not affecting me the way it does but for some reason, that never clicked 100% with me...For some reason, watching this lecture, I finally snapped and got what everyone has been talking about for ages.

In this lecture, Joel Osteen talks about Having Mountain Moving Faith and talking to your mountain, that big permanent problem that doesn't seem to be going anywhere anytime soon. Well, as you can imagine, my mountain is CMT. And I've been talking to her...call me crazy!

But wouldn't you know, that since I've been talking to my mountain, things just seem to be falling into place? I am having a lot more energy, I am managing to get a lot more accomplished around the house, I am getting up in the morning with very little pain and ready to go, even when I've had a jam-packed day the day before.

And what do I say to my mountain? I listen to a lot of what he says in the lecture and I tell CMT that I am commanding it to leave, that my God is bigger and stronger than CMT will ever be in my body, that we've had a good run together but I have learned the lessons that it came to teach me. I also tell CMT that it's time for us to part ways so I can move on to the next phase of my life: parenthood. That I want to have a pregnancy with less medications, I want to be big and beautiful and want my legs to be strong enough to hold me...and I just talk. If you know me, you know I am a yapper! And talking to it and telling it we are done seems to have changed something in me physically, emotionally and spiritually. I am not allowing it to take over me. I have stopped saying: "Man, I know I am going to be exhausted tomorrow because I've done so much today"...instead I am saying "Tomorrow is going to be another wonderful day and I'm going to wake up full of energy and ready to go."

It took me a long time to get here but it seems I finally learned. I am going to continue to talk to my mountains going forward because I like this new me...I like being able to be more independent and self-reliant and it makes me feel like the old me...before I ever heard of the words: Charcot-Marie-Tooth.

And all of this has brought on a new excitement, a desire to do more...which I will share in my next post!

More CMT Awareness...

...courtesy of Bernadette! I have talked a lot about Bernadette, her documentary, and her efforts to spread the word on CMT.

She did an interview with The Indie Chicks website at the end of last year and I just wanted to share it here.

Bernadette Scarduzio: Charcot-Marie-Tooth Warrior and Inspiration 

Click HERE


Enjoy and pass it on :)

Living with Chronic Pain and Prejudice

It's been a long while since I wrote on my blog, but to say the last 6 months has been a roller coaster is an understatement. I got off my meds and got pregnant but sadly miscarried around Christmas time, we took a family trip where my sister got engaged and I struggled with traveling with a scooter for the first time, we gutted our kitchen and lived through the renovation. During the renovation, I decided to go back on all my meds because I was sick and tired of being sick and tired.

Living with chronic pain is hard on your body and on you emotionally. There are days when you wish you could just hit the pause button and walk a mile in someone else's shoes for a change. As you struggle with all the intricacies that come with it, you must also deal with spoken and unspoken prejudice about your condition. Do you really feel as bad as you claim? What about that day when you were more active and in a better mood? Are you maybe just lazy? Is your life really as difficult as you claim because it doesn't seem like it? Why are you taking a handicapped parking spot from someone who really needs it? And these are just a few...

I've just read a really interesting article that describes these feelings to a T...read it here: A Pained Life: Pain Patients Need to be Heard

Unfortunately, CMT falls under the umbrella of the diseases rarely heard about. That's why spreading the word is so important and why we strive to make more and more people aware. Much has been done in the last few years and hopefully this will be a non-issue at some point in my lifetime.

"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: http://myjourneywithcmt.blogspot.com/2010/08/lots-of-new-cmt-friends.html.

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 :)

Strength

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 much...it 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.

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 sense...here are some pics of my riding around this beautiful place...

Loving life on my scooter!!!

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!!!!