Life is so perfect, even in its apparent disastrous ways. I thank God everyday for His presence in our lives and the knowledge that no suffering comes without a cause. With that in mind, I wake up every morning and find strength to ignore the screams from my legs and hands and the deep desire to stay in bed, give into the numbness and the pain.
Hi, my name is Milena. I'm Michi´s younger sister (25). I, unlike her, have no talent to keep a blog. I truly admire the people who do. I specially admire my sister who has always been an example in my life; a true light in the dark.
Michele and I have always radically differed when it comes to exercise. I have always been very active; I loved to work out at the gym with weights. I danced, swam, hiked, practiced yoga --and managed to do all these with regularity. One day I was at my desk at work when I felt tingling sensations in my right arm. I was 23 at the time (the same age Michi was when she was first diagnosed with CMT). I went to the hospital but they couldn’t figure out what I had so they immobilized my arm up to my elbow. A couple of days later, the tingling hadn’t stopped, so I went back to the hospital and this time they changed the cast to one that reached my shoulder. I returned home but 6 hours later was in the emergency room screaming from pain and begging them to remove the cast.
Milena doing yoga in 2007
After that day at work, we all began wondering if I could possibly have CMT too. We weren´t aware then that it also affects the arms. So I fooled myself for some time thinking it could be something else. Two weeks later, tingling and pain spread to my left arm and 2 weeks after that it spread to both my legs and feet. I started feeling numbness in my feet as I was walking to physical therapy one day and suddenly couldn’t take another step.
Life changed drastically since that first tingling sensation. I was forced to quit college, stop working, sports and any hobbies that gave me a work out ... Michele had the patience to sit on the phone with me and hear me talk on and on about everything she always felt. It was a new and scary world for me. She took my hand and showed me the way when I was so overwhelmed and afraid that I couldn´t even think of the next step. Kalila, our other sister, the only one who doesn´t have CMT, was the best 'nurse' anyone could ever hope to have. She washed and brushed my long hair... She helped me eat, and sat beside me when I cried; whether it was because I was in too much pain or because I missed my old life. A life, I realize now, I´ll probably never go back to.
Me, Milena, and Kalila
Time passed and I got used to CMT and learned to live with it. Now I’m back in school, started practicing yoga again, and with the help of my boyfriend went back to walking/jogging. I jog for like 2 minutes without stopping and it feels amazing!!!!
I know God was very good to me, he prepared me through Michele. In all this time and through all the pain, Michi has never asked "why me?" She accepts her struggles and makes the best of it. She is such a beautiful fighter! It´s an honor to be her sister.
While I've gone thru some CMT turmoil, I have much to be grateful for; a comfortable home, food… I am blessed to have a wonderful man in my life who helps me and encourages me to move forward, and most importantly, a family whom I thank everyday for the love and support that has never failed me. Even with CMT, I am happy! It slowed me down, but it won't stop me from dreaming and from achieving the things I want in life.
I couldn't sleep on Wednesday night (shocker!) and I was browsing the net at 3am on Thursday and found Bernadette's video (see previous post). After viewing and really being touched by it, I scrolled to the bottom of the page and realized they were having a fundraiser that very same night in NYC. I sent the info to Jess to see if she wanted to go to the event with me.
To make a long story short, we were really happy to make it to the event, had the pleasure to meet and talk to Bernadette and also met Allison Moore, the Founder and President of the Hereditary Neuropathy Foundation, an organization dedicated to finding the cure for CMT. It was really nice to hear how much is being done to help find a cure for this debilitating disease. I commend Bernadette for making this video and sharing her life and story with the world...
To watch more of Bernadette's video, click HERE. The video is right on the home page.
Me, Jess and Bernadette
Today I had the pleasure to meet another CMT'er who originally reached out to Jess. Lisa and I talked for hours about CMT and how it affects our lives and I really felt like I've known her for a long time...I actually feel this way when I meet and talk to most CMT'ers.
These are complete strangers who share my struggles and who really understand what I'm going through. It is so comforting to talk to someone who really gets it.
It's funny that I started this blog only as a means to keep my sisters, who live in Brazil, updated and also because I didn't have to tell all these stories so many times. I figured it'd be easier if they just read it. I never meant to send out the link or share it with anyone. And little by little, this blog has connected me to so many people that I may never had had the chance to meet had it not been for this. I am really happy to have met them and hope that we can be there for each other...especially during our upcoming surgeries =)
I just stumbled upon this video on Nattering Nic's blog and I am BEYOND excited!!! The word on CMT is getting out more than ever and this just gives me so much hope that help is on the way.
Click below to see the trailer that brought tears to my eyes: "Bernadette"
How exciting that CMT gets an entire week to help build awareness??? Hopefully this will be brought to the attention of people who can really help to make a difference.
I will be celebrating in the hospital since I am getting my 2nd surgery on September 20.
I don't know if you've noticed that my entries have been a little bit more spaced out lately...I am happy to say that is because I've actually been living life and making up for some lost time. I spent so long sitting and so much time inside during my recovery that as soon as I started walking and feeling better, I started taking some advantage of it.
I just spent the last week in New Jersey with my mom and it was great!!! I finally went to the beach and started working on my tan, went to lunch with friends, visited my friend and her new baby, went to a bridal shower, surprised John with skydiving, spent the day at the pool and BBQ'd, visited a new dear friend and fellow CMT'er Jess, went to church, etc. It was just a really happy week!! It was great to feel normal again. Oh and it's also great how everyone is so happy and excited to see you after going through such serious surgery!
But in all honesty, I think I did too much. I was just soooo tired by the time I got back home to CT that I was a zombie all day yesterday. And to make matters worse, CMT brought me back to my "real" life and I fell pretty hard in our office yesterday. My right foot slipped in the flip flop and I lost balance. I didn't even have time to try to find something to hold on to, one minute I was up and the next I was hitting the ground. Thankfully, my left foot wasn't hurt. But as with any good fall, today my body is sore everywhere so I'm taking it easy big time.
During my awesome week, I also saw my surgeon for a final follow up and we scheduled the surgery on my right foot for September 20. So I have about 6 weeks to live up the end of the summer, before I'm in bed for a long time again. But I am really really really ready to do it. I am ready to start 2011 on a new page, with new feet.
Thank God everything in life passes...and I am sooo thankful that the excruciating pain I felt a couple of weeks ago is gone. My old pains are back and I can't tell you how happy I am to be just having my regular pains...LOL. Sometimes life really puts things in perspective for you!!!
It has been 3 months since my surgery now and I continue to reach milestones...like dusting off my car (literally) and going for a ride. My car sat for so long that a spider decided to keep it company and build its home there!
In honor of my 3 months, John and I went to celebrate by having lunch at Olive Garden...OH MY! How I missed their food!!!!!!!!! To say I pigged out is an understatement. After our wonderful lunch, we went shoe shopping because I am tired of wearing the same pair of sneakers every day. I asked one of the shoe store employees to give me one of those foot measuring things so I could figure out my shoe size once and for all. Well....my shock wasn't to find out my NEW shoe size, it was to find out how little my original feet really became.
In high school, I used to wear a 6.5. Well, this weekend we found out, my right foot is a size THREE!!!!!!!!! 3...TRES...III...TROIS...TRE!!! Isn't that a child's size? No wonder shoe shopping has always been a dreaded event for me...and my new shoe size is a 6, which is nice, it's average. It should be easier for me to find shoes from now on and I left the store with a new pair of sneakers :)
Having surgery and recovering during the summer is definitely not one of the easiest things...I am constantly icing my foot to keep the swelling down, it's so hard to match my cute summer outfits with sneakers or my boot, I am definitely not wearing flip flops outside in this heat...but on the upside it's one summer of my life. And I'm hoping by next summer I have two pretty new feet to flaunt.
So...to celebrate that my funky mood is gone and that I am walking and that life is good and 3 months went by quickly and my next surgery is on the horizon and the excruciating pains are gone and my new size 6 foot and that I'm lucky to be alive...cheers to getting better!
This has been an amazing week, while also awful at the same time. We traveled to Newport, RI for the 4th of July with two of our favorite couples. It was just a 3-day getaway, where we saw beautiful places, laughed til we cried, and just had a fantastic time. We brought my wheelchair so I could be rolled around the entire time and not take away from our day trips. Thank God for John who pushed me all weekend, even getting calluses on his hands....I don't know what I would do without you. My foot felt great and I was able to walk around a little bit and get up to take pictures.
Unfortunately, as the rest of my body felt great and happy, my legs reminded me CMT doesn't take time off. It was difficult to fall asleep and I tossed and turned in bed all night, waking up in the morning crying. It felt like the pain in my thighs reached new heights, getting ready to test me again. Now that I have been used to my old friends, they've decided to up the ante and see how much more I can take. Thankful for the support, I got in the shower, took a pain med and went out. I wasn't about to let CMT ruin my fun getaway.
Thankfully the super-meds helped me throughout the rest of the weekend, but it left me very thoughtful and honestly, sad. This was such a simple trip where I got wheeled around 99% of the time and my thighs were so painful (on a scale of 1 to 10, I'd say 11), that it made me wonder if I'll be able to take some of my dream vacations. Will I ever be able to go to Italy and walk the cobblestone streets? What about Greece? All these beautiful European countries I want to see with my own eyes, where so much walking is involved. And obviously once you open the can of worms, only worms come out...what about having a family? Will I be able to keep up with a kid?
And if it wasn't for the thinking alone, but the pain has persisted, even after we came home. Sure, the first couple of days I blamed PMS (it normally gets worse with PMS)...but it's Friday and I'm still having trouble sleeping because my body is so uncomfortable. So it's just been a little bit of a sad week for me, not mostly sad because of the thinking, mostly sad because I am hurting and there's nothing I can do about it.
But I am not a sad person, so I am allowing myself these few days that I'm more emotional than usual (thanks to PMS) and just crying my tears and starting to feel better. And today I am back to me again. But I do think I need to adjust my thinking and prepare myself if this new pain decides to stay so I can just accept it and move on with my life.
Even through the bad, I am appreciating the good. This week I am walking with no help, I am just walking. The swelling has gone down a lot and my foot is looking a lot more normal. And I've tested the waters by taking a few steps barefoot on my hardwood floors and guess what? No callus pain on my left foot...which is so strange. I can't even remember the last time I had no pain when I stepped down. Step with the right foot, there are my calluses and they hurt. Step with the left...nothing! I guess this is what people with normal feet feel like all the time. I can't wait to have no callus pain at all.
I didn't realize just how much I had missed walking until last Friday, the day when I started walking without the help of crutches or walker (but still with the boot). It felt SOOOO good to move around the house, to help out, to be more independent.... It just really felt unbelievable to be able to move again after 2 months of much sitting and passing the time.
I guess the Gods heard my complaints last week and not only did I get to walk, but I actually also got to put on a bathing suit and hang out by the pool with my family. I also got to hang out with many friends from church at a fundraiser BBQ and watch the Brazil game together. Little by little it feels like life is going back to normal.
On Tuesday, I had another follow up appointment with Dr. Feldman and I am actually ready to walk on my own...no boot, no crutches, no walker. He was so proud of his work and of my progress that he fake cried - that was actually pretty funny. He is so impressed that he said I am at 2 months where patients normally are at 6 months. Go me!!!! And to prove that my foot is really good, he smacked it around a bit lol. He decided that we will do nothing more to my left foot, no need to go in and take out the pins. He said I should be fine with them. And we also scheduled the surgery on my right foot for August 27...I am ready to get all of this done and back to my real life.
I walked out of his office in sneakers. It was very liberating, but also very weird. It's hard to describe but it just doesn't feel like it's a part of my body yet. So the last 2 days I've been pretty active (but not over-doing it) around the house. Unfortunately yesterday it started to bother me a lot and it was very swollen, like my own little watermelon. So today I am forbidden (by John) to walk. LOL. So I am back to using my walker and icing it a lot in hopes that it will go back down. I also have my first physical therapy appointment later today so that should be fun.
If I am learning anything from my experience, it's not to take life for granted. Sometimes we get boggled down by problems and the simplest things can upset or depress us and we may complain about how unfortunate we are. Well, if you are living, breathing, walking, and most importantly, if you're healthy...you already have so much. The saying "You don't know what you have until you lose it" is so true. So don't wait til you "lose" things to realize how important they are. Just be grateful for today!
Time really goes by so fast...my surgery was exactly 2 months ago today. I have to admit the 2nd month was a lot harder than the first. I miss those good ol' days when I could take the SUPER-meds and my pains were all gone. Since I stopped taking them after the first month, life has been a little more complicated, and at times, A LOT more painful (not my feet, but my thighs). But the funny thing is that even though life can get difficult, it also finds a way to show you joy...
My foot is healing nicely and it feels good. The scars are healing great, except for the one by my ankle (which I pulled the scab before it was ready to come out. I know I know!!! I shouldn't have!), so that is taking a little longer to heal. I am walking with the help of the boot and either with the crutches or the walker (I prefer to be an old lady just at home). After keeping it down for a while, it gets somewhat swollen and I need to ice it.
I try to keep a positive attitude as much as possible, but I have to admit this whole situation got the best of me earlier this week. I was just moody and annoyed that I can't be outside and enjoy this summer. I was annoyed that I still need so much help with things that I could've easily done on my own before, but mostly I was angry about the summer. This is my absolute favorite time of year and now I only get to see it through the window. It's June 16 and I haven't even put on a bikini yet (I know this is so minimal in the scale of things but remember, this was my venting day).
Also, my disability claim got denied...like seriously?? When I told my surgeon, he said it was impossible. I could probably write an entire entry on how the system is so messed up, but for now, I'll just say that I am getting some legal assistance to file an appeal. Hopefully, things will go in my favor.
Thankfully, my mom came to the rescue with my dad on Monday. It was great to have my parents here the entire day. She helped us so much by cleaning the apartment and bringing tons of my favorite foods for our freezer. She and I went through my shoes to clean out my closet and most of it had to go, so my sisters will be the lucky recipients of all my shoes. It turns out my foot is only a half a size bigger, it looks like it's so much more because my right toe isn't straight.
It's also been great to have the World Cup going on right now...it's kept me really busy. I've never watched this many games or been aware of so many teams' stats. Brazil had their first game against North Korea yesterday and it wasn't too impressive but they won. I'm excited to watch the next game in Newark with a bunch of friends and some Brazilian BBQ.
Despite feeling a little down this week, I am grateful for little by little regaining some of my independence. I can now completely shower on my own, I can walk and go up and down the stairs, I can help around the house a little (helping with dishes or making our bed), I carry things back and forth in my trusty tote bag, walking and putting pressure on my foot feels better and better every day. I am completely off pain meds and even though my leg pains are very strong, they're only a little stronger than before and I get used to handling them. I have also been sleeping much better. It's amazing how simple these things are in our lives that we would normally take them for granted,but for me, every little step and every new thing that I can do on my own gives me such a huge sense of accomplishment.
I really miss the normalcy of life, being independent and being a regular member of society, getting in my car and going anywhere I want. But then I remember that I am doing this to have a better life and that eventually I will have all those things back and more! So I try not to think that it has been a long 2 months, but instead, I'm 2 months closer to achieving a healthier and happier life.
PS: I want to dedicate this entry to Tia Ana. She lives in Brazil but somehow figured out a software to translate all my entries to Portuguese and now she's an avid follower of my blog and my progress. Thank you Tia! I love you!!!
Or I felt too much like Superwoman that I overdid myself. Since I am blogging to document everything, I really should say today was the COMPLETE opposite from yesterday...
I felt fine in the morning and as I got ready to go to the movies with my girlfriends. I even managed to go down the 5 steps out of our apartment building ok. Right foot first, then left foot, right, left...ok! Well I wasn't paying attention when I stepped off the curb into the street and I stepped left foot, then right foot and I freaked out that I changed the order. I might have been ok but I wobbled a bit and kind of just banged into the car. No biggie.
Well, as soon as I got out of the car at the movies, I was definitely in pain and it only kept getting worse. We watched the movie and went back to Emily's house where I saw my foot was swollen (1st time it happened since the cast came off). I spent the rest of the day icing it and keeping it elevated. The pain from laying down all day has bothered me so much, I'm still up.
I have to admit, I am a little disappointed. I was so excited to be independent yesterday and today I went backwards. I get that this is part of recovery, but I am still a bit bummed. Another part of recovery that I need to get used to is knowing my limits...since I've never done this before, I don't know when too much is too much. But as with everything else, I will get the hang of it.
As per doctor's orders, I've been practicing walking in my boot more and more. Yesterday I walked at the park for a little while and was even able to walk up 5 steps at our apartment building (I am back home in CT now).
But today I walked around the apartment and tidied things up: I put clothes away, I made our bed, I put dishes away in the dishwasher and fixed the table. I feel like a million bucks!!!!
After not being able to do much for myself over the last 7 weeks, it felt really nice to do something. To be able to be self-sufficient and not to have to ask for so much.
I'm very excited about how my recovery is going...and it's crazy that just this Tuesday I thought Dr. Feldman was nuts by telling me to walk!!! I guess he knew what he was talking about....
Before things got better, they got a little worse. After my last entry, I spent another week not being able to sleep well. One night I went to bed at 7am (after being up all night) and the next day at 8am. The day after that, I slept from 2am-6am. Needless to say, I was starting to get a little desperate and considered taking sleeping pills. But I held off, because I knew I was going home to CT to spend Memorial Day weekend with John. Thankfully, that's all the medicine I needed. I've been sleeping great ever since and I am definitely caught up on my rest.
I went to see my surgeon yesterday for my 6-week follow up and to take the cast off. First, I was really grateful to have lived such a healthy life up til this point and to not really have had many medical problems as a child and teenager. My doctor is actually a pediatric surgeon and he was having a very busy day so the waiting room was full and my heart went out to those families. Little children and young teens in casts, a young boy with so much metal sticking out of his body from hip surgery, and a boy with such a serious condition I never even knew existed. It just made me sad because they should be outside running and enjoying this nice weather. But the upside is that hopefully they'll have a pain-free and easier adult life than I've had.
So it's finally my turn and what a relief it was to finally have my foot free and get a little more comfortable. But to be honest, I thought it looked worse than it did 4 weeks ago. My skin is soooo dry and my foot actually looked really dark, it's like one foot tanned and the other didn't (see pics below). Since I've never had surgery before this, I was a little worried but Dr. Feldman reassured me that it's healing just fine. The scariest thing is that he wants me to start walking on it NOW...and not little by little, to start immediately with the boot. And I'll have to wait on physical therapy. He wants me to see him again in 3 weeks and he'll recommend it then when I'm more used to walking. He also said to bring sneakers for my next appointment...oh boy!!!!
When we got home, I have to admit, I was soooo sooo scared to put my foot down. I had no idea what to expect; well actually, I expected to feel a lot of pain. You spend 6 weeks protecting your foot from harm and from touching anything that it's kind of scary when you're given the green light. Thankfully John and my mom were here for moral support. After the first few steps, it wasn't too bad at all, until John noticed I was cheating and putting most of my weight on my arms! LOL. Well, after I got caught, it still wasn't too bad. It felt good to finally walk again with two feet.
Here are a couple of pictures of my "fraternal" twins...it doesn't look great, but I'll post better pictures once the scabs go away:
I hope more stories like this come out so we can find some treatment or even a cure for CMT. She was blessed to not start having problems until her 50s but many of us are struggling with them now, all the more reason to promote awareness.
The last 2 weeks have definitely been full of highs and lows for me. I'll start with the lows so I can end on a high note.
When I saw my surgeon over two weeks ago, he asked me to start weaning off the strong meds (narcotics) I've been taking since the surgery. So over the course of the last couple weeks, I have been reducing the medication by half and also spacing it out more. Finally, I felt good last Thursday and decided to stop taking it altogether. I was so proud of myself, my operated foot felt fine and so I went most of the day without taking anything.
However, my old pains had a different plan in mind. The medication was so strong that it made me forget how strong the pain in my legs really is when I am laying down for hours at a time. No medication or treatment I have ever tried has worked to calm them, except for this, which is clearly not the right solution. So that first night I battled with myself not to take anything and see how far it could go. Well, I ended up giving up at 2am and taking a full pill because I had already been brought down to tears and it was just ridiculous at that point. So the next day I tried spacing it out 12 hours - not good. The following day, 10 hours...didn't work.
On Sunday night, I talked with a friend from church and her husband, who is a doctor, who were kind enough to sit with me and try to figure out what kinds of treatment may be helpful for me. He was extremely resourceful and had lots of ideas that we could try and he was also going to speak to a pain specialist about my case. Thank you C & G!!!
On Monday, I went to see my regular podiatrist who has been so helpful and kind to me over the years. We talked about different options to try to ease the pain and I also talked to him about the ideas that we had discussed the night before with our friends. The first thing that was important for me to do was to increase my dosage of Lyrica to try to help with my nerve pain...since the surgery, I've had really bad nerve pain on my left foot. He also gave me two prescriptions for new pain meds that are very strong, try one for a week to see if it works, if not, then try the second.
I started with the new medication immediately. It did have its side effects so I spent most of Tuesday in the bathroom (I know this is TMI). However, I wish that was my biggest concern. As my stomach started to calm down towards the end of the day, the pain in both my legs and the nerve pain picked up and I couldn't sleep until 6am on Wednesday. It was one of the longest and most difficult nights of my life but I have my parents to thank for sitting with me, for crying with me, for taking turns with each other so the other could catch a few zzzz, after all they both had work the next day. I have to say, I hope to make them both very happy still...because the saddest thing is to watch your parents cry for you because they see you in pain. I can't promise it won't happen again, but I do hope to still give them many tears of joy. Kal & Mica - didn't want you to worry so I didn't tell you today...but I'm better now so please don't worry.
Tonight the pain seems to be ok, not gone, but under control. I just can't sleep so I turned to writing on my blog again at an odd hour of the night....that's when the magic happens!!
As for the highs, it would seem that it's impossible to find them when the last two weeks have been about managing my pain, but I have been fortunate to go to church a few times, I can feel my upper body getting stronger and holding me up better, and I have gone home to spend a few days with my hunny.
At church, I got to see sooo many dear friends and hear some words of comfort and support from everyone. It was beautiful to see how many of our friends lined up to help bring my wheelchair (with me in it) up the stairs. I am really phobic of stairs so it wasn't the easiest thing for me to do, but I made it. I heard a lecture from a young woman my age whose life I could really relate to...and she chose to end her lecture by singing a song about how the pain will pass. I was already emotional enough from the outpouring of love and support, so it was no surprise that I let out my "bucket" of tears. I truly enjoy a good cry and I just felt so much lighter afterwards.
My mom drove me home to CT and I was able to spend a couple of days with John and also got to see so many of our friends there. It felt nice and odd to be home, since it had been almost a month that I'd been gone. I have to say, he's doing a great job keeping up the place on his own...I've taught him well :)
I knew this journey would be full of ups and downs and I was ready for them. Sure, it's not easy as I'm going through it, like a sleepless painful night. But today, that's a memory. At first, going up and down the stairs was so difficult and now I've actually done it twice in one day and even a few days in a row and no soreness. I know it will get easier as I go and hopefully I'll be out of the cast and able to move a little more so my legs won't be so sore. I am hopeful this new medication will work for me so that I will be able to keep taking it even after I'm healed to get some relief.
Today, I was so tired from not sleeping so a couple of friends came over to help. One of them (who is older than me) just recently went through her own medical scare and sudden surgery and in a moment of difficulty, she said she thought of me. That she had seen how strong I have been through my process that she had to try to be stronger through hers, that I was an example she wanted to follow. That was so sweet and nice to hear!
Good days give you happiness, bad days give you experience.
Both are essential in life.
I'm a girl with hopes and dreams who has Charcot-Marie-Tooth (I know! You've never heard of it!). In this blog, I talk about my journey with this invisible disease and 2 reconstructive foot surgeries (and a 3rd minor surgery) I've gone through in the last 18 months. And I try to do it all with a positive attitude and a smile on my face :)
