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?

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. 

CLICK HERE TO READ THE CAPTION

Video of Our 1st CMT Support Group Speaker

WOW...how 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 :)

CMT at the Tea ... Part 2

To read Part 1....click 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 honor...to raise awareness and to fundraise...it 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 research...it 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 mess...is 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.

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!

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!!!!

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 opens...so 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: http://www.kpvi.com/s/EKry8HZ_aUmx975JHoJSoA.cspx

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: http://myjourneywithcmt.blogspot.com/2010/04/i-did-it-i-really-really-did-it.html

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 :)

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 more...you 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 :)

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 indeed....like they say, when one door closes, another door opens...

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 supportive...one 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.

Howdy!

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...