I am clearly a pro at hanging out in a cast for 6 weeks...This is me at around 5 years old with my little sis, Milena. How funny is this picture!!!!
How tough do I look with my afro and super cool shades?? I guess the Strawberry Shortcake PJ's doesn't really help my gangsta image...LOL
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My life with CMT and trying to deal with constant chronic pain with a positive attitude...
Friday, June 25, 2010
Thursday, June 24, 2010
Feels Sooo Good to Walk Again!!!
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!
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!
Wednesday, June 16, 2010
Happy 2 Months to My Foot!!!
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!!!
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!!!
Labels:
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Monday, June 7, 2010
LOL...I think I spoke too soon...
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.
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.
Saturday, June 5, 2010
Today I'm Feeling Like Superwoman!!!
Today has been a great day!!!!
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....
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....
Thursday, June 3, 2010
Weeks 6 and 7: Time to see my foot again...
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 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:
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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 :)
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