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...

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.

Steps:
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.

Reality Check

Happy Holidays!!!!!!!!! I hope everyone has had a great holiday so far...we had a great Christmas Eve in NJ with my family and Christmas Day in CT with John's family....and in just a matter of 4 days (New Year's Eve), we will become Mr. and Mrs....WOOHOOOOOOOOOO!!!! I cannot wait!!!

In the meantime, I've been taking advantage of the last two weeks of my health insurance through my job to get everything free since I met my deductible in March/April...I'm sure CMT'ers can sympathize! I met with the new neurologist at Yale Medical Center and LOVED him!!!! He is just not a regular doctor, he's our age, he's hip and he knows EVERYTHING about CMT, so how could we not love him??? He talked at length about CMT and I explained my history and at the end of our discussion he thought I should give AFO's a try. I thought that I had averted the subject long enough but since I'm in a race to get "free" stuff with my insurance I scheduled an emergency appointment for last week and will be picking up my braces tomorrow. They will probably look like this picture...

What I find interesting is how God has been placing some people on my way so I can see that I really don't have it all that bad. While waiting to be called in at the orthotic store, I ran into a beautiful little girl who couldn't be more than 5 or 6 years old whose entire left leg was a prosthetic leg. And today while exercising away in physical therapy and feeling exhausted, there was a man in a wheelchair struggling just to be able to lift himself on and off the chair...and those were his exercises...while I was able to walk around doing mine....so really, next to these two scenarios, what do I have to complain about?

Sometimes a reality check is good to give you perspective of your situation and I think I needed just that! Feeling beyond grateful again...

Bernadette on the News

I am so thrilled that CMT is getting more and more media attention. Please take a minute and watch this clip about Bernadette's documentary, which is in its final stages:
http://www.nbcphiladelphia.com/video/#!/news/health/Living-With-CMT/135645588

You can also check her website for more updates: http://www.bernslife.com/ 

The CMT Rollercoaster

I have continued to be M.I.A. from my blog because the last couple of months have been a struggle: physically and emotionally. I didn't really want to write a sob story or just complain so I thought it was best to stay away for a while.

Since I really crashed at the end of September, I have actually been struggling to get back to normal and can't seem to get there. I have been on this new work schedule for 2 months and I can't seem to feel less exhausted. We paused a lot of the home renovation projects so we could get some rest. I can't remember the last time I cooked a meal...unfortunately none of these things have helped much. It has been a slow recovery process and I've actually started to use my wheelchair on a regular basis when we go to any big stores like Home Depot or Bed Bath & Beyond. The pain reached an all-time high, which led to many crying/sobbing sessions, much time spent thinking about life and pondering "What is my future going to be like?" And as a person with a progressive degenerative neuropathy, it's NEVER good to go down that path.

We actually took a 2 week vacation in Brazil where my entire family was reunited for the first time in over 15 years. John and I were very excited to get away and get some much needed rest. The trip, like CMT, had many ups and downs. The absolute BEST thing about our vacation was that John proposed to me in front of my entire family. It was such an exciting moment and so special that we got to share it with my sisters and all the relatives there. I have been blessed with a wonderful family and a very supportive and loving man who will soon be my husband!!!!

The downside was that even though my CMT decided to take a break, I had a couple of different ailments that kept me in bed for most of the trip, sleeping all day and awake all night, and unable to spend quality time with family and siblings I hadn't seen in over 2 years!!!

I am so thankful for having a religion, for having faith, for believing in a higher power, but I definitely reached a point where I was just exhausted emotionally. Tired of bearing the brunt of the pain, wanting just a little break, desperate for some normalcy...and for the first time in my life I became depressed. I know many CMT patients struggle with depression because it's not easy dealing with non-stop chronic pain, but I had never experienced this myself. While I recognized what was going on with me, I couldn't get myself out of this "funk."

I think one of the main reasons I've been down is that now that we're getting married, we own our home, the next logical step is to have babies. I am so lost. I don't know what to do. I know that I want a family but I am scared. I'm scared about who's going to care for the baby when I am at my worst, I am scared about pregnancy, what if my symptoms get worse? And what if I pass on CMT to our baby? I know life will work itself out eventually but not knowing which way to go has been a bit upsetting for me. John is okay with whatever decision I make, he's happy as a two-some but he's so great with children that I want our child, I want to have a family, I want the child laughter in our home...but I watch all my "healthy" friends struggling with the craziness of being a parent, I wonder how I'll be able to do it with this tired body of mine... I know many of my CMT buddies have managed it and that's always positive reinforcement, but I still wonder...

To make a long story short, I think I'm slowly getting better but I am seeking help. John and I talked about many possible treatments and we decided that it would be best for me to go back to physical therapy, which will be starting tomorrow. I have also been stretching at home every night and I feel like it has made a difference for the better. I have NEVER been able to touch my toes and look at me now!!!!

 

I will also be starting yoga this weekend...a great friend from church has volunteered to come to my house and help design a program that will be helpful for me that won't be too tiring. She's going to teach me breathing techniques and exercises we can do sitting or laying down. I'm also in search of a new primary care physician so I can have a physical done and a new neurologist at the Yale Medical Center. Wish me luck!!!

Even though I have CMT to deal with, it seems that God sent a bunch of angels to watch over me...from friends who volunteer to help here and there, to a wonderful mom who comes over and fills our freezer with yummy food, to a wonderful fiance who knows what to say at the right time and helps me so much around the house, to fantastic dad who is there for us to help with whatever we need, to amazing sisters who are there to hear me out, to dish out advice and sometimes just be a shoulder to cry on (even if long distance).

I know I will find the strength to get back to normal...to be my happy self again with hopefully a little less pain. Life is full of happy moments and sad moments, to those with a medical condition or not. I am tired of being sad and of thinking too much. 

2011 has been an amazing year for us, but also a very difficult one for many reasons. I am really hoping that 2012 has a lot of exciting things in store for us.

Yes, I'm Still Alive!

I can't believe it's been almost 3 months since I last wrote on my blog. I have had a million things to write about, but life kinda got in the way. I will keep this short so I don't bore you to death or quit before I can finish it...

I have had an insane summer...surgery in July, return to work after two weeks, then John and I were very blessed to find our perfect home and purchase it in the beginning of August, spent that month renovating it, moved in on the weekend that "Irene" decided to hit Connecticut, lost power for one week so we had to keep going back and forth to our empty apartment just to shower and use the fridge, and on top of all that, I have been planning 7 work events for September and October. If you got tired just reading this, imagine living it, with a condition that already exhausts you for doing the smallest tasks?

Oh and did I mention how I totally missed CMT Awareness Month? Really annoyed about that...was just too insane to think or write about it...

Unfortunately, my body couldn't take it anymore and crashed in a really bad way a little over two weeks ago and it was my worst experience with CMT to date...I seriously considered going to the hospital because even my strongest "back-up" pain pills did not work. Eventually, my doctor was able to help me figure out what medicine might work, but it's now almost 3 weeks later and I feel like I'm still recovering.

To make matters even more "interesting" my job decided that if I could no longer attend the events (I asked to not attend any event in the month of October for fear of the pain flaring up again), which are a major part of my job, that they might have to replace me!!!!! STUNNED SILENCE! Thankfully, that situation worked itself out for the best...they really love me there and did not want to see me go so they've offered me a part-time position where I get to leave work at 2:30pm everyday with a very reasonable package. Even though we don't understand His plans all the time, things seem to have a way of working themselves out sometimes...

My new schedule will begin this Monday and I CANNOT wait to get home early, get some rest, and then actually try to live a little. Hopefully, I'll be able to come back and write lots more because this is the condensed version...I have a lot more to say about everything...but let's wrap it up here and hopefully I'll return very shortly :)