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 original Catwoman shares her story about having CMT
Thursday, May 20, 2010
Weeks 4 and 5: To be Honest, I've Been Better
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 am keeping the faith....
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 am keeping the faith....
Monday, May 10, 2010
Muito Obrigado Mãe...
Ontem foi Dia das Mães e eu parei pra pensar e refletir o quanto eu sou grata a minha mãe.
Minha mãe que tem sorrido comigo, chorado comigo, sentido a minha dor, feito de tudo para aliviar o meu cansaço, facilitado a minha vida, me dado conselhos e escutado minhas decisões. Minha mãe que se doa incondicionalmente, que não mede seu cansaço para me ajudar, que dirige e vence os seus medos para me visitar.
Mainha – sem você, eu não sei o que seria de mim. Como eu fui tão sortuda na loteria da vida que você me escolheu lá em cima, que você aceitou dividir o meu fardo. Você soube que a nossa jornada seria difícil e você simplesmente falou que sim.
Muitos não sabem o que é o apoio de uma mãe, de um carinho, de uma sopinha na cama em um dia que não se sintam bem.
Você é uma super-mãe, tem o coração partido em três pedaços, um aqui e dois no Brasil. Nós fizemos algo de certo para te merecer.
E agora que eu já tenho 29 anos, preciso de ti como naqueles primeiros anos da minha vida: não posso tomar banho sem você, comer sem sua comidinha que me traz na cama, escovar meus dentes sem sua ajuda, me vestir e até mesmo os meus passos. O que faria sem você? Essa pode ser a minha jornada, minha necessitade de resgatar meus erros passados, mas com certeza, você caminha comigo. Se pudesse, eu sei que tomaria meu lugar.
Mais saiba, que você fez tudo certo. Você me criou para ser uma mulher forte, uma mulher que acredita em Deus e tem fé e certeza que ele sabe o que faz. Você me apresentou a doutrina que eu amo, me mostrou resignação, me ensinou a não reclamar diante as dificuldades da vida. Você me preparou para os dias de hoje.
Deus é muito bom. Ele sabia que eu precisaria aprender, mais ele não me deixou sozinha. Ele me confiou à uma mãe que me amaria e que cuidaria de mim, me deu um pai tão bom, irmãs que caminham comigo e um companheiro que me ama.
Quando eu vencer esse capítulo e virar essa página da minha vida, o crédito será NOSSO. Mainha, muito obrigado por tudo!! Eu te amo muito!
Mãe - é palavra que exprime com perfeição o que a natureza tem de mais sublime.
É o exercício permanente do amor.
Mãe, o céu sem confins revela-me teu amor...
A vastidão do mar fala-me da tua bondade...
As altas montanhas refletem teu heroísmo...
A profundeza dos vales espelha tua humildade...
A beleza das flores traduz teu caminho...
Tudo isso encerras dentro de teu grande coração...
E silenciosa, serena, sorrindo, continuas labutando no cotidiano da vida.
Obrigado, Mãe!
Minha mãe que tem sorrido comigo, chorado comigo, sentido a minha dor, feito de tudo para aliviar o meu cansaço, facilitado a minha vida, me dado conselhos e escutado minhas decisões. Minha mãe que se doa incondicionalmente, que não mede seu cansaço para me ajudar, que dirige e vence os seus medos para me visitar.
Mainha – sem você, eu não sei o que seria de mim. Como eu fui tão sortuda na loteria da vida que você me escolheu lá em cima, que você aceitou dividir o meu fardo. Você soube que a nossa jornada seria difícil e você simplesmente falou que sim.
Muitos não sabem o que é o apoio de uma mãe, de um carinho, de uma sopinha na cama em um dia que não se sintam bem.
Você é uma super-mãe, tem o coração partido em três pedaços, um aqui e dois no Brasil. Nós fizemos algo de certo para te merecer.
E agora que eu já tenho 29 anos, preciso de ti como naqueles primeiros anos da minha vida: não posso tomar banho sem você, comer sem sua comidinha que me traz na cama, escovar meus dentes sem sua ajuda, me vestir e até mesmo os meus passos. O que faria sem você? Essa pode ser a minha jornada, minha necessitade de resgatar meus erros passados, mas com certeza, você caminha comigo. Se pudesse, eu sei que tomaria meu lugar.
Mais saiba, que você fez tudo certo. Você me criou para ser uma mulher forte, uma mulher que acredita em Deus e tem fé e certeza que ele sabe o que faz. Você me apresentou a doutrina que eu amo, me mostrou resignação, me ensinou a não reclamar diante as dificuldades da vida. Você me preparou para os dias de hoje.
Deus é muito bom. Ele sabia que eu precisaria aprender, mais ele não me deixou sozinha. Ele me confiou à uma mãe que me amaria e que cuidaria de mim, me deu um pai tão bom, irmãs que caminham comigo e um companheiro que me ama.
Quando eu vencer esse capítulo e virar essa página da minha vida, o crédito será NOSSO. Mainha, muito obrigado por tudo!! Eu te amo muito!
==============================
Mãe - é palavra que exprime com perfeição o que a natureza tem de mais sublime.
É o exercício permanente do amor.
Mãe, o céu sem confins revela-me teu amor...
A vastidão do mar fala-me da tua bondade...
As altas montanhas refletem teu heroísmo...
A profundeza dos vales espelha tua humildade...
A beleza das flores traduz teu caminho...
Tudo isso encerras dentro de teu grande coração...
E silenciosa, serena, sorrindo, continuas labutando no cotidiano da vida.
Obrigado, Mãe!
Week 3: The Good, The Bad, and The Beautiful....
So much has happened since my last entry, I started writing this one a few times but quite honestly wasn't really inspired so I just waited to write it. And what do you know? It's 4am and I can't sleep so I thought I'd catch up ...
I was really looking forward to finally getting to meet my new foot as I was going to see my doctor for my follow up. John and my mom drove me into NYC for the appointment. I was really excited for this, a moment 5 years in the making. I could tell my doctor was really busy so he got right to work by taking off the first cast, which was a little scary. I know he is a great doctor and this was a minor thing to him, but when you see that little saw cutting so close to your leg it's a little nerve-wrecking. I honestly didn't know what to expect...wasn't sure how I would react. At first, it looked a little gross because the first thing I saw were the stitches and the blood on the cotton. And the more he peeled off, the more my absolutely gorgeous foot peeked out to say "Hello" to me. I was speechless (if you know me, you know those moments are hard to come by). And then a wave of emotions started to run through me...of happiness, of accomplishment, and a little weird because the foot was so beautiful and as a person who never had a beautiful foot, I felt like they attached someone else's foot onto my body. The arch was almost non-existent, my toes were perfect straight, and my foot was so long!!! I was a size 6.5 in high school and through the years, my foot has shrunken down to a size 5.5 - 5. My new foot is definitely at least one shoe size bigger!
DISCLAIMER: I'm going to post the pictures here and I hope they don't upset anyone. As the title of this blog reads, this is my journey and I've been waiting for these "after" pictures for a long time!
First, a recap...this is the picture of my old foot:
And this is my new beautiful foot ... despite all the bruising, swelling and my new cool scar:
I was so happy and overcome with emotions that I cried. Cried because a wave of memories washed over me, back to 2004 when I started my diagnosis process, searching for answers. Back to 2005 when the first doctor suggested surgery and I balked at the thought. I thought of all the pain that I've had with my calluses, of all the difficult shoe shopping trips I would force myself to go on to try to find a decent pair of shoes to wear to work, to a nice event, or just to be comfortable. Happy that this is a new beginning for me and that even though we are only at the start, this proved to me that I made the right decision.
My doctor was extremely pleased with what he saw, he said he couldn't have done anything better or different than what he did. That the foot is healing beautifully, that the swelling is very normal for where we are. He actually seemed to admire his work of art a couple of times. I didn't mind at all because that work of art happens to be attached to my body :) He also told me he thinks I am very brave, that when he met me he didn't think I would be doing as well as I am...something John has also said to me. I know there's a light insult in there somewhere lol...but I choose to see the compliment and that made me very happy.
I got a new cast and will be in it for another 4 weeks. I return to the doctor's office on June 1 when they will remove that and put me in a boot and hopefully I will be able to start putting some weight on my foot. We were so excited that we went out to eat to celebrate.
Even with the bad, I am ecstatic and cannot wait til June 1 to get to see my new footsie again :)
I was really looking forward to finally getting to meet my new foot as I was going to see my doctor for my follow up. John and my mom drove me into NYC for the appointment. I was really excited for this, a moment 5 years in the making. I could tell my doctor was really busy so he got right to work by taking off the first cast, which was a little scary. I know he is a great doctor and this was a minor thing to him, but when you see that little saw cutting so close to your leg it's a little nerve-wrecking. I honestly didn't know what to expect...wasn't sure how I would react. At first, it looked a little gross because the first thing I saw were the stitches and the blood on the cotton. And the more he peeled off, the more my absolutely gorgeous foot peeked out to say "Hello" to me. I was speechless (if you know me, you know those moments are hard to come by). And then a wave of emotions started to run through me...of happiness, of accomplishment, and a little weird because the foot was so beautiful and as a person who never had a beautiful foot, I felt like they attached someone else's foot onto my body. The arch was almost non-existent, my toes were perfect straight, and my foot was so long!!! I was a size 6.5 in high school and through the years, my foot has shrunken down to a size 5.5 - 5. My new foot is definitely at least one shoe size bigger!
DISCLAIMER: I'm going to post the pictures here and I hope they don't upset anyone. As the title of this blog reads, this is my journey and I've been waiting for these "after" pictures for a long time!
And this is my new beautiful foot ... despite all the bruising, swelling and my new cool scar:
My doctor was extremely pleased with what he saw, he said he couldn't have done anything better or different than what he did. That the foot is healing beautifully, that the swelling is very normal for where we are. He actually seemed to admire his work of art a couple of times. I didn't mind at all because that work of art happens to be attached to my body :) He also told me he thinks I am very brave, that when he met me he didn't think I would be doing as well as I am...something John has also said to me. I know there's a light insult in there somewhere lol...but I choose to see the compliment and that made me very happy.
I got a new cast and will be in it for another 4 weeks. I return to the doctor's office on June 1 when they will remove that and put me in a boot and hopefully I will be able to start putting some weight on my foot. We were so excited that we went out to eat to celebrate.
The good and the beautiful came together....the bad came when the doctor said I need to start weaning off the pain medication. Instead of a full pill every 6 hours, I should do half a pill and then eventually down to a quarter. That worked out well Tuesday and Wednesday but on Thursday night, not so much. The fact I had visitors all day may have contributed to the fact I was in so much pain at the end of the night, which led to a few more tears. So I took a full pill at night and another in the morning, and then back to a half pill and so far it's been ok. The bad is also that this medication is so strong that it had been suppressing my usual leg pains and with its decrease, my old friends have come back in full force so it's hard to find a position to be comfortable in. I plan on calling the doctor's office tomorrow to see if there's any medication I can substitute it with that may have the same positive effect on my body.
Sunday, May 2, 2010
Not Quite a Walk in the Park
Yesterday was an absolutely gorgeous day...sunny and in the 80's. I spent some of my day in bed looking out the window at the beautiful day wishing I could go out and enjoy it as if there was nothing keeping me from doing that.
Thankfully, my dad was thinking the same thing. He was so adorable and got out of work early to come home to take me to the park. I was really excited to be able to enjoy the sun a little. However, I didn't realize what a mission it would be to go out. As my mom put it, it felt like they were going out with a baby (aka ME) with all the preparation and stuff needed just for us to go out. My dad went and packed the wheelchair in the trunk, then all my essentials went in my mom's purse (chapstick, phone, camera, wallet and meds), we needed my comfy pillow to support my foot during the car ride, water so I could take my pain meds and the walker so I could get to the stairs.
I am really phobic of stairs so I would never even attempt to go down on crutches. I got myself to the top of the stairs on my walker and then dropped down to go on my butt. Going down wasn't so bad....coming up was another story.
It was really nice going to the park though. I love this time of year when everyone comes out of hiding. It was great to be out and get some fresh air. As my dad pushed me around, it was a little weird to get so many stares. People, have you never seen anybody in a cast before? Geez Louise!!! Even though it was nice to be out, the body tires easily so at the end of the first lap I was ready to come home.
Arriving at home, I brought myself up the stairs by sitting on them again and that's when the exhaustion really hit me. I had to go up slower and take a couple breaks here and there. I felt triumphant when I got to the top of stairs and rewarded myself by throwing my body onto the bed and relaxing for a while.
And today...hello sore muscles!!! It seriously feels like I went to the gym and lifted weights (come to think of it, I did lift my 120 lb. body up the stairs). Everything is sore! Owwww. Even though it hurts I'm proud of myself for being able to do it and I definitely need to keep up my physical therapy and even use the stairs more to build up some strength.
Obviously it was so hard because this was the first time. I'm wondering if I will actually for once in my life have some nice muscles in my arms at the end of this. I know it's too early to tell but one can dream....
Thankfully, my dad was thinking the same thing. He was so adorable and got out of work early to come home to take me to the park. I was really excited to be able to enjoy the sun a little. However, I didn't realize what a mission it would be to go out. As my mom put it, it felt like they were going out with a baby (aka ME) with all the preparation and stuff needed just for us to go out. My dad went and packed the wheelchair in the trunk, then all my essentials went in my mom's purse (chapstick, phone, camera, wallet and meds), we needed my comfy pillow to support my foot during the car ride, water so I could take my pain meds and the walker so I could get to the stairs.
I am really phobic of stairs so I would never even attempt to go down on crutches. I got myself to the top of the stairs on my walker and then dropped down to go on my butt. Going down wasn't so bad....coming up was another story.
Arriving at home, I brought myself up the stairs by sitting on them again and that's when the exhaustion really hit me. I had to go up slower and take a couple breaks here and there. I felt triumphant when I got to the top of stairs and rewarded myself by throwing my body onto the bed and relaxing for a while.
And today...hello sore muscles!!! It seriously feels like I went to the gym and lifted weights (come to think of it, I did lift my 120 lb. body up the stairs). Everything is sore! Owwww. Even though it hurts I'm proud of myself for being able to do it and I definitely need to keep up my physical therapy and even use the stairs more to build up some strength.
Obviously it was so hard because this was the first time. I'm wondering if I will actually for once in my life have some nice muscles in my arms at the end of this. I know it's too early to tell but one can dream....
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About Me
- Michele
- CT, United States
- 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 :)