Well, sometimes not everything goes as planned.
I was thankfully very calm as the surgery got closer. The only time I got somewhat nervous and I think it really hit me is when I spoke to the hospital and got my surgery time. I needed to be admitted by 9:30am and the operation was scheduled for 11am. Oh boy! It was really gonna happen. But that was the only moment of nervousness.
I even woke up the next day (March 17) not sure why my alarm went off so early...LMAOOO. We got up, I made sure to put away all my bottles of water and my lotions in preparation and to avoid the temptation. I took my cat shower (yuck...you shower with anti-bacterial soap and then they give you these wet cloths to "dry" yourself with but they make your body sticky so I felt like I just licked myself like a cat! LOL). My mom, John and I were so calm it felt like it was going to happen to somebody else. I think all the prayers and positive energy from family and friends helped sooo very much!
We got to the hospital early and started the process. I put on my surgical outfit and just waited to see Dr. F as promised because he knew I was in a lot of pain and he wanted to see me before we went in to try to figure it out. While we waited, we people watched.
Dr. F finally stopped by to see me and he was accompanied by Dr. G (surgeon who is retiring me and kinda "dumped" me)!!!!! I was so happy to see him there. He came to watch my surgery like he said he would. I thought that was really nice. Well, Dr. F was really really concerned about this new pain, he was worried that the pain would get much worse after surgery and then he would just feel guilty for putting me in that situation. He preferred calling it off since it's an elective procedure and doing it any other time, but trying to figure out what it is right now. He said the first step would be to take an MRI to see if it would be a spine problem, then to see the neurologist, Dr. K (I had already met him 5 years ago when I was first getting diagnosed).
I can't say that I was not disappointed. I was actually really disappointed because I am sooo ready to start this process and it was also a little frustrating because I was just at the hospital on Monday and we could have done all of that then. But I was glad to see he was being cautious and worried about my condition so I had to be happy about that.
Soo then starts our tour through the hospital lol....we saw so many people and went to so many floors. First, I had to get discharged, then we went to the MRI where I was told there would be a really long wait..as long as we were already there, I didn't want to leave and have to drive back into the city. Thankfully I didn't have to wait long because the lady in front of me gave up after 5 minutes because she panicked. I had never done an MRI before so I had no expectations, I was okay because I thought I could just go to sleep and it was supposed to be 45 minutes. Little did I know, they ask you NOT to sleep while you're in there because sometimes your body twitches involuntarily in your sleep and the technician told me I had to be in there for an hour and a half!!!!!! Holy kakamoley!!!!! The machine I was in was sooo tight that I started having a panic attack, it felt like I was being buried alive, I tried closing my eyes and taking deeper breaths and it wasn't working. So I decided to pray...pray to every guardian angel and saint I could think of...just ask for them to calm me down so I could go through with the test. And since I so strongly believe in the power of prayer, what do you know??? Not even 2 minutes later, I could feel myself calming down. At one point, my body jerked a little because I was falling asleep and I started praying all over again for them to calm me down but not that much! LOL that I still needed to stay awake so I started singing songs in my head. The most uncomfortable thing is that my right leg and foot started going numb which is very painful for me. My foot felt like a rock and started to twitch a bit, which was out of my control (I didn't take my meds that day because of the surgery). Thankfully I MADE IT! The whole hour and a half!!! I was actually really proud of myself...
Then we headed to the neurologist's office. Again they were fitting me in as an emergency so we waited a bit and then he came in. He was sooo good!!! He knew exactly what to do and what do you know??? All this pain I'm feeling IS a result of the injection I did last week. Not because of the steroids but because the nerve where they applied the injection is irritated. He touched the place on my hip and I immediately felt the exact same pain on my thigh. He's confident this is not a lasting problem and I should be okay within the week. He didn't give me any medicine to take but told me to put the lidocaine patch on it and it should get better. He thinks we should hold off on the surgery for about a week and I should be better by then. Thank GOD! Our last stop was to do a blood test to check to make sure the Vitamin B level in my blood is within a good limit otherwise it could impact how I feel in a negative way.
Today I called my surgeon's office and he's out of town at a conference and will be back on Monday. I guess I'll know more then. The pain is teensy tiny bit better today, it's been a little easier to walk and to stand up. John and I went and sat on Boulevard East because it was such a beautiful day and I just wanted to feel some sun on my skin.
Sometimes life has other plans for us and we have to roll with the punches. I've never been great with a change of plans but I've been so relaxed that I really feel okay about this one. I know it will happen when the time is right.
Thursday, March 18, 2010
Tuesday, March 16, 2010
Say a little prayer for me....
I am so glad that I celebrated my birthday in a big way because after going to the hospital last Monday, I've pretty much been feeling crappy ever since.
I stayed at my parents' in NJ after the injection because I was not supposed to drive for 24 hours. I drove home on Tuesday but ended up spending most of the day on the couch feeling dizzy, feverish and having chills. I woke up feeling a little better on Wednesday and got worse as the day went on. I called on a friend and asked for a ride to church so I could at least go to the study group, hoping to feel better. I'm so glad that I did because I had a wonderful experience there and received some great support and comforting words from friends. Thursday I felt a little better so I went shopping for last minute items I wanted to bring to the hospital with me - nightgowns and comfy sweats.
But Thursday night, I felt this extremely sharp pain on the side of my left thigh. I didn't think much of it until Friday morning when I woke up and that pain was worse. It started to be very difficult to sit down and to get up and even to walk without limping. I called the hospital and spoke with the doctor who did the procedure on Monday and when I explained the situation he did not think it was related to the injection. I called my surgeon's office and the best they could do is recommend I take Tylenol extra strength. I have such a wonderful mom that she decided to drive up from Jersey and check up on me to make sure I was ok. We also had a couple of friends stop by to see how I was doing.
Unfortunately, Saturday the pain was even worse and I officially spent most of my day on the couch, only getting up when it was absolutely necessary. This really was starting to worry me because this pain is completely unlike my usual pains and I was just starting to hope for life to be "nice and easy" with my old friends - all my pains that I'm already used to and know what to expect. Sunday was not any better and my mom offered to come pick me up so I could stay at their place in case I needed to go to the hospital on Monday. I accepted immediately because it was definitely not getting any better and I knew I would have to try to do something about it and I was hoping to at least try to figure it out before my surgery on Wednesday.
It was a little sad to leave earlier than expected because the plan was to drive down on Tuesday after John got home from work. It was a little sad to be leaving my new home after just a short month to be gone for a few weeks. But it was also good to know that my mom would be able to help me a lot more and that I would be able to go into the city on Monday either to see my surgeon or go straight to the hospital.
Arriving in Jersey, I already feel like I'm at Hotel Brandao! LOL. My parents are the best and are seriously doing so much for me. Their love and care will seriously make this process so much easier on me. I'm grateful that despite our problems and concerns, we can still laugh and have fun. My mom and I couldn't sleep so we talked and laughed about Milena and the atleta for hours. Or my dad made fun of me being such a viejita because I'm walking with a cane. Or my new toilet seat (Thanks Em!) that will be parked next to my bed. Laughter therapy is so powerful.
First thing I did when I got up this morning was call my doctor's office but he was at the hospital in surgeries all day. His nurse said it would be best to go straight there since that's where I had the procedure done and if I needed any x-rays or an MRI it would be much easier to do and she said if they needed to keep me there I could just stay til Wednesday. Oh lordy! Thank goodness my hospital bag was almost all packed. So I had to prepare myself to possibly be admitted today...first order of business, shaving and fixing my eyebrows lol.
Unfortunately this hospital visit wasn't very helpful. To make a long story short, a very young resident told me straight off the bat he didn't know what I had. Well...if the doctors don't know what I have, then who will? And whatever happened to let's talk to me more to try to figure out what it is? He looked so young that my mom guessed he was 25 and I thought 28...well, she was right! I have no shame so I actually asked him! LOL.
I did more x-rays of my hips and thighs, told my story to at least 5 different people and at the end no one knew what to do with me. They didn't even recommend any medication I could take (not that I could take many since I am still planning to be operated on Wednesday). Finally, they called down to my surgeon and he realizes that the injection obviously did not work. He doesn't think that it's so much of an emergency that we should cancel on Wednesday so he said he will look at the x-rays and come see me before the operation to examine my legs.
It's really frustrating to have the people who are the experts not know what's wrong with you and not be able to help you but this is not the first time I've dealt with this. I guess ever since the beginning, the doctors have always been a little lost...it took so long just to diagnose me. I'm glad that at least I tried and went into the hospital. Normally, I would've just stayed home and now Dr. F knows he needs to come see me before the surgery.
My mom thinks I don't look like I'm in pain enough so they probably don't think it's a big deal. LOL. Actually I've heard that a few times in the past couple of weeks. I don't know how else to be. I am someone who lives with constant pain...can you imagine how miserable my life would be if I let that pain win and show on my face all the time? I'm not always happy-go-lucky but I try as much as I can. There are days when the pain is at a 10 and there's no way I can hide it but thankfully that's not everyday. The more I fill my life with love, laughter and a positive attitude, it's like an adrenaline kicks in and I can forget it's there. I've been dealing with it for so long that you kind of have to develop a mechanism to not let it control how you live. I think one of the hardest parts of my day is getting up in the morning because it's when the pain is strongest. If I can get out of bed, then I can make it through my day.
But without a doubt, the biggest contributor to how I react to how I feel is my faith in God. I am thankful for my belief system, for knowing in my heart that everything happens for a reson. God wouldn't let us suffer in vain and so there must be a reason why I'm going through this. It does not matter if I do not fully know the reasons right now, I just know that He is just and fair. I believe in karma and how we must redeem ourselves for our past behaviors, whether in this life or another. I am grateful for the opportunity that I have to do that in this life. And he gave me such a great support system to go through this process.
I am surrounded by such positive energy and I have received such positive feedback, so many phone calls, emails and messages, especially since I decided to send this blog to more friends. I know I am going in on Wednesday but I can only imagine the chain of positive energy and prayers I will have on my side that day. It's during difficult times that people really come together and offer their love and support. I thank each and every one of you who has offered me a kind word and your help in any way.
At the end of the day, I think I'm a lucky girl. Sure, the journey I am on may not be the easiest but the people around me sure know how to lighten my load.
.... I think this is my last entry pre-operation. Wish me luck and please say a little prayer for me. See you on the other side!
I stayed at my parents' in NJ after the injection because I was not supposed to drive for 24 hours. I drove home on Tuesday but ended up spending most of the day on the couch feeling dizzy, feverish and having chills. I woke up feeling a little better on Wednesday and got worse as the day went on. I called on a friend and asked for a ride to church so I could at least go to the study group, hoping to feel better. I'm so glad that I did because I had a wonderful experience there and received some great support and comforting words from friends. Thursday I felt a little better so I went shopping for last minute items I wanted to bring to the hospital with me - nightgowns and comfy sweats.
But Thursday night, I felt this extremely sharp pain on the side of my left thigh. I didn't think much of it until Friday morning when I woke up and that pain was worse. It started to be very difficult to sit down and to get up and even to walk without limping. I called the hospital and spoke with the doctor who did the procedure on Monday and when I explained the situation he did not think it was related to the injection. I called my surgeon's office and the best they could do is recommend I take Tylenol extra strength. I have such a wonderful mom that she decided to drive up from Jersey and check up on me to make sure I was ok. We also had a couple of friends stop by to see how I was doing.
Unfortunately, Saturday the pain was even worse and I officially spent most of my day on the couch, only getting up when it was absolutely necessary. This really was starting to worry me because this pain is completely unlike my usual pains and I was just starting to hope for life to be "nice and easy" with my old friends - all my pains that I'm already used to and know what to expect. Sunday was not any better and my mom offered to come pick me up so I could stay at their place in case I needed to go to the hospital on Monday. I accepted immediately because it was definitely not getting any better and I knew I would have to try to do something about it and I was hoping to at least try to figure it out before my surgery on Wednesday.
It was a little sad to leave earlier than expected because the plan was to drive down on Tuesday after John got home from work. It was a little sad to be leaving my new home after just a short month to be gone for a few weeks. But it was also good to know that my mom would be able to help me a lot more and that I would be able to go into the city on Monday either to see my surgeon or go straight to the hospital.
Arriving in Jersey, I already feel like I'm at Hotel Brandao! LOL. My parents are the best and are seriously doing so much for me. Their love and care will seriously make this process so much easier on me. I'm grateful that despite our problems and concerns, we can still laugh and have fun. My mom and I couldn't sleep so we talked and laughed about Milena and the atleta for hours. Or my dad made fun of me being such a viejita because I'm walking with a cane. Or my new toilet seat (Thanks Em!) that will be parked next to my bed. Laughter therapy is so powerful.
First thing I did when I got up this morning was call my doctor's office but he was at the hospital in surgeries all day. His nurse said it would be best to go straight there since that's where I had the procedure done and if I needed any x-rays or an MRI it would be much easier to do and she said if they needed to keep me there I could just stay til Wednesday. Oh lordy! Thank goodness my hospital bag was almost all packed. So I had to prepare myself to possibly be admitted today...first order of business, shaving and fixing my eyebrows lol.
Unfortunately this hospital visit wasn't very helpful. To make a long story short, a very young resident told me straight off the bat he didn't know what I had. Well...if the doctors don't know what I have, then who will? And whatever happened to let's talk to me more to try to figure out what it is? He looked so young that my mom guessed he was 25 and I thought 28...well, she was right! I have no shame so I actually asked him! LOL.
I did more x-rays of my hips and thighs, told my story to at least 5 different people and at the end no one knew what to do with me. They didn't even recommend any medication I could take (not that I could take many since I am still planning to be operated on Wednesday). Finally, they called down to my surgeon and he realizes that the injection obviously did not work. He doesn't think that it's so much of an emergency that we should cancel on Wednesday so he said he will look at the x-rays and come see me before the operation to examine my legs.
It's really frustrating to have the people who are the experts not know what's wrong with you and not be able to help you but this is not the first time I've dealt with this. I guess ever since the beginning, the doctors have always been a little lost...it took so long just to diagnose me. I'm glad that at least I tried and went into the hospital. Normally, I would've just stayed home and now Dr. F knows he needs to come see me before the surgery.
My mom thinks I don't look like I'm in pain enough so they probably don't think it's a big deal. LOL. Actually I've heard that a few times in the past couple of weeks. I don't know how else to be. I am someone who lives with constant pain...can you imagine how miserable my life would be if I let that pain win and show on my face all the time? I'm not always happy-go-lucky but I try as much as I can. There are days when the pain is at a 10 and there's no way I can hide it but thankfully that's not everyday. The more I fill my life with love, laughter and a positive attitude, it's like an adrenaline kicks in and I can forget it's there. I've been dealing with it for so long that you kind of have to develop a mechanism to not let it control how you live. I think one of the hardest parts of my day is getting up in the morning because it's when the pain is strongest. If I can get out of bed, then I can make it through my day.
But without a doubt, the biggest contributor to how I react to how I feel is my faith in God. I am thankful for my belief system, for knowing in my heart that everything happens for a reson. God wouldn't let us suffer in vain and so there must be a reason why I'm going through this. It does not matter if I do not fully know the reasons right now, I just know that He is just and fair. I believe in karma and how we must redeem ourselves for our past behaviors, whether in this life or another. I am grateful for the opportunity that I have to do that in this life. And he gave me such a great support system to go through this process.
I am surrounded by such positive energy and I have received such positive feedback, so many phone calls, emails and messages, especially since I decided to send this blog to more friends. I know I am going in on Wednesday but I can only imagine the chain of positive energy and prayers I will have on my side that day. It's during difficult times that people really come together and offer their love and support. I thank each and every one of you who has offered me a kind word and your help in any way.
At the end of the day, I think I'm a lucky girl. Sure, the journey I am on may not be the easiest but the people around me sure know how to lighten my load.
.... I think this is my last entry pre-operation. Wish me luck and please say a little prayer for me. See you on the other side!
Monday, March 15, 2010
Tuesday, March 9, 2010
Visit to the hospital...
Today was my first official visit to the Hospital for Joint Diseases to get injections into my hips (to see if that will help the pain in my thighs) and also to do all my operation registration and pre-testing. I'm so glad that my parents came with me, just because we really weren't sure what kind of reaction I would have to the injection and also to support me =)
I really didn't know what to expect of both procedures and I have to admit I was a little worried about the injections because like most people, I don't love needles. The hospital staff was extremely nice and helpful and made me feel at ease right away. I changed out of my regular human clothes and into a hospital gown and I even got a hospital bracelet...Thankfully they gave me two gowns so I didn't have my backside exposed to the world.
First, I talked to the nurses about basic information and then the doctor came in to explain the actual procedure. They were going to numb me with lidocaine and mark the spot to be injected. Then they would hook me up to this machine so they could see what was going on inside in real time. COOL! Before they applied the medication, which I found out today was actually steroids, they release a dye into the area to make sure they were in the right joint. All of this happened in less than 10 minutes and was actually only a little uncomfortable, mostly when they were applying the shot for numbing.
There was another medicine mixed in with the steroid that would work in the first 5-6 hours and the steroids won't kick in for 2 days. The effects can last from a few weeks to possibly a couple months. If this works, I can only repeat this procedure 4 times a year because the steroids can have a negative effect on your bones and ostheoporosis is a major side effect. I say "if this works" because this is really trial and error. We don't know this will work for sure because the doctor isn't sure my thigh pain is related to my hips but we are trying. I am feeling positive that even if this doesn't work out, at least now we are exploring areas I have never explored before and I'm hoping one of them will be the right one. I need to keep track of my pain levels over the next week so I can talk to the surgeon about it and see if there's been any improvement or no change.
When we were all done, I headed down to Admissions and started to sign my life away...so many forms. And they asked me if I have a DNR (Do Not Resuscitate Form) and a will...kind of weird to think about these things at 29. I guess watching television does pay off sometimes because I knew what the DNR was from Grey's Anatomy...LOL...and yes! Please resuscitate me!
When I was done with all the forms, we headed upstairs for all the pre-testing. I cannot stress how nice the nurses were...I was really impressed. I continued to go on and basically tell them my entire life story because they asked me 1,000 questions, my blood pressure is great, I found out I lost some weight, did a blood test, EKG (results were good) and I found out more serious information about next week's procedure. Some of these were the most interesting to me:
I am really happy that we were able to do everything in one day. Now I just need to wait until next Tuesday to find out the final details.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
On a side note, John is getting me one of these leg elevator pillows that should be really helpful once I have the cast on and to be more comfortable. I'm thinking maybe I should also get a back pillow...we'll see.
I really didn't know what to expect of both procedures and I have to admit I was a little worried about the injections because like most people, I don't love needles. The hospital staff was extremely nice and helpful and made me feel at ease right away. I changed out of my regular human clothes and into a hospital gown and I even got a hospital bracelet...Thankfully they gave me two gowns so I didn't have my backside exposed to the world.
First, I talked to the nurses about basic information and then the doctor came in to explain the actual procedure. They were going to numb me with lidocaine and mark the spot to be injected. Then they would hook me up to this machine so they could see what was going on inside in real time. COOL! Before they applied the medication, which I found out today was actually steroids, they release a dye into the area to make sure they were in the right joint. All of this happened in less than 10 minutes and was actually only a little uncomfortable, mostly when they were applying the shot for numbing.
There was another medicine mixed in with the steroid that would work in the first 5-6 hours and the steroids won't kick in for 2 days. The effects can last from a few weeks to possibly a couple months. If this works, I can only repeat this procedure 4 times a year because the steroids can have a negative effect on your bones and ostheoporosis is a major side effect. I say "if this works" because this is really trial and error. We don't know this will work for sure because the doctor isn't sure my thigh pain is related to my hips but we are trying. I am feeling positive that even if this doesn't work out, at least now we are exploring areas I have never explored before and I'm hoping one of them will be the right one. I need to keep track of my pain levels over the next week so I can talk to the surgeon about it and see if there's been any improvement or no change.
When we were all done, I headed down to Admissions and started to sign my life away...so many forms. And they asked me if I have a DNR (Do Not Resuscitate Form) and a will...kind of weird to think about these things at 29. I guess watching television does pay off sometimes because I knew what the DNR was from Grey's Anatomy...LOL...and yes! Please resuscitate me!
When I was done with all the forms, we headed upstairs for all the pre-testing. I cannot stress how nice the nurses were...I was really impressed. I continued to go on and basically tell them my entire life story because they asked me 1,000 questions, my blood pressure is great, I found out I lost some weight, did a blood test, EKG (results were good) and I found out more serious information about next week's procedure. Some of these were the most interesting to me:
- I will not find out what time the surgery is on until Tuesday night
- I cannot eat anything past midnight on Tuesday (regardless what time my surgery is...here's praying that it's earlier in the day. I asked what if it's later in the afternoon. Answer: Sorry but you will have to suck it up). If I'm dying of thirst I can take a teensy tiny little sip
- I won't know how many days I'll be there until we do it...we have to play it by ear
- I can continue to take my Lyrica/Vitamin B
- I will have to buy some medicine for my nose to be used everyday 5 days prior to surgery to help against infections
- I will have to shower the night before and morning of with Dial anti-bacterial soap and not dry myself with a towel. They gave me special patient pre-op cloths that are supposed to help sterilize my skin
- I gave them authorization to give me a blood transfusion if I needed one
I am really happy that we were able to do everything in one day. Now I just need to wait until next Tuesday to find out the final details.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
On a side note, John is getting me one of these leg elevator pillows that should be really helpful once I have the cast on and to be more comfortable. I'm thinking maybe I should also get a back pillow...we'll see.
Saturday, March 6, 2010
What a special birthday week!
My birthday was 2 days ago...March 3. Growing up, I was annoyingly excited about my birthday every year...I'd start the countdown at New Year's and announce it to the family every day (LOL - imagine growing up with that girl!). As we get older, I still love my birthday but I definitely don't fuss as much or plan huge things.
This year, I wanted to see all my friends and really enjoy myself while I could still walk places on my own 2 feet. My mom says I'm acting as if I'm gonna die but that's not it. I just wanted to have fun without it being a burden, without having to worry about a huge boot, crutches, etc. and get to see all the people I really care about because I'm gonna be out of commission for a little while.
So event #1 was a birthday in Jersey with friends at Las Palmas Restaurant. It was such a fun fun night filled with laughter, catching up with everyone and just having a good ol' time. I saw some friends I hadn't seen in a while and some who I just went away with. Like Laura's beautiful card said, I may not see or talk to you all the time, but you are still one of my closest friends. And that's how I feel about all the people that came out.
On the actual day of my birthday, John said we had to leave the house exactly at 11:40am and he was blindfolding me! How super duper exciting! First, because I've never been blindfolded and second because I love surprises. I thought he might take me to the spa but he drove in circles and completely confused me...but finally we pulled up at the spa!!!!!!! He got me a 60 minute facial and 90 minute swedish/hot stone massage. Oh how I love him!!! And he also took the day off, which I didn't know about. As I got treated like a princess, I really thanked God for all my blessings and for this special week in my life. Later, John took me to eat my favorite: crab legs, crab cakes, and a virgin strawberry daiquiri.
He doesn't usually spoil me like this...but given the circumstances, he wanted me to have a great memorable and relaxing birthday so I can look back on this in a few weeks time and remember how happy I was.
Since I didn't know he would be off work, I had already said I would be going to my church study group. On my way to therapy (one needs to heal the body and soul), I called my parents' house and got no answer. I had a great session and left to go to church. On my way to church I called their house again and no answer. Then finally a light bulb went off in my head. THEY'RE COMING TO CT FOR MY BIRTHDAY!!!!!!!!!! OMG!!!!!! When I turned the corner on the right street, I saw my mom's car and her NJ plates! I got so excited that I dropped my phone under my car. GREAT! And to my surprise, my friends from church also planned a little birthday party for me there.
Today, we also got to have dinner with John's family for my birthday and it was just such a great time. And tomorrow, we are having our game night/potluck birthday dinner with many dear friends here in CT...this has been an incredibly awesome birthday!
Not to mention all the loving text messages, emails, phone calls, facebook/orkut (this is Brazilian facebook) posts...
It's funny how things that happen in your life that would make you think they are a negative can make you feel the complete opposite way. I feel SO SO loved by so many special people and I really feel their support and prayers. And I KNOW how many people are pulling for me. So when I think about it, I can only be grateful to God for giving me the strength to go through with this and for giving me all the tools in life to prepare for such a moment and not question "Why me?" I know exactly why me...it's a lesson I am here to learn and He was so kind to send me all these beautiful and amazing people to help me through this journey.
This year, I wanted to see all my friends and really enjoy myself while I could still walk places on my own 2 feet. My mom says I'm acting as if I'm gonna die but that's not it. I just wanted to have fun without it being a burden, without having to worry about a huge boot, crutches, etc. and get to see all the people I really care about because I'm gonna be out of commission for a little while.
So event #1 was a birthday in Jersey with friends at Las Palmas Restaurant. It was such a fun fun night filled with laughter, catching up with everyone and just having a good ol' time. I saw some friends I hadn't seen in a while and some who I just went away with. Like Laura's beautiful card said, I may not see or talk to you all the time, but you are still one of my closest friends. And that's how I feel about all the people that came out.
On the actual day of my birthday, John said we had to leave the house exactly at 11:40am and he was blindfolding me! How super duper exciting! First, because I've never been blindfolded and second because I love surprises. I thought he might take me to the spa but he drove in circles and completely confused me...but finally we pulled up at the spa!!!!!!! He got me a 60 minute facial and 90 minute swedish/hot stone massage. Oh how I love him!!! And he also took the day off, which I didn't know about. As I got treated like a princess, I really thanked God for all my blessings and for this special week in my life. Later, John took me to eat my favorite: crab legs, crab cakes, and a virgin strawberry daiquiri.
He doesn't usually spoil me like this...but given the circumstances, he wanted me to have a great memorable and relaxing birthday so I can look back on this in a few weeks time and remember how happy I was.
Since I didn't know he would be off work, I had already said I would be going to my church study group. On my way to therapy (one needs to heal the body and soul), I called my parents' house and got no answer. I had a great session and left to go to church. On my way to church I called their house again and no answer. Then finally a light bulb went off in my head. THEY'RE COMING TO CT FOR MY BIRTHDAY!!!!!!!!!! OMG!!!!!! When I turned the corner on the right street, I saw my mom's car and her NJ plates! I got so excited that I dropped my phone under my car. GREAT! And to my surprise, my friends from church also planned a little birthday party for me there.
Today, we also got to have dinner with John's family for my birthday and it was just such a great time. And tomorrow, we are having our game night/potluck birthday dinner with many dear friends here in CT...this has been an incredibly awesome birthday!
Not to mention all the loving text messages, emails, phone calls, facebook/orkut (this is Brazilian facebook) posts...
It's funny how things that happen in your life that would make you think they are a negative can make you feel the complete opposite way. I feel SO SO loved by so many special people and I really feel their support and prayers. And I KNOW how many people are pulling for me. So when I think about it, I can only be grateful to God for giving me the strength to go through with this and for giving me all the tools in life to prepare for such a moment and not question "Why me?" I know exactly why me...it's a lesson I am here to learn and He was so kind to send me all these beautiful and amazing people to help me through this journey.
Tuesday, February 23, 2010
1st Preparations for Surgery
Today I need to start doing some minor things so I can be ready for surgery. I spoke to the nurse at Dr. F's office and I need to stop taking some of my medications. I have to completely stop taking Vitamin C (I take 1500 mg a day because there's been some initial research about the positive effects of Vitamin C on CMT patients), my birth control pills (YIKES!), and pain relievers.
All of these contribute to thinning your blood so I need to stop them immediately so that won't be a problem as we get closer.
Next up...my pre-op testing and lidocaine injection on March 8!
All of these contribute to thinning your blood so I need to stop them immediately so that won't be a problem as we get closer.
Next up...my pre-op testing and lidocaine injection on March 8!
Friday, February 5, 2010
Finally....SURGERY!
I was waiting for a date to finally write this entry...March 17. But so much happened while I waited that now I have lots more to write about.
When I was diagnosed with CMT in 2005, I was immediately referred to Dr. G, a doctor with the Hospital for Joint Diseases. At the time, I didn't like him because he had a one-track mind: SURGERY! Back then, I was certainly not ready. I wasn't even expecting to hear I had a genetic neurological condition, let alone talk about getting surgery! So I pushed the thought to the back of my mind. Over the last couple of years, my pain has certainly increased exponentially and more and more I had to think of that option that I pushed to the back of my mind.
Things in life happen for a reason because I was definitely not thinking surgery in 2009. But it's when I moved to Stamford, CT with John and commuted to/from work in NJ a couple times a week and my pain definitely hit a peak. So over the summer, I started to think that I definitely wouldn't be able to commute for too much longer and I started looking at jobs in CT. This also happens to be one of the worst economic times our country is going through so it was slim pickings and even then, hard to get a call back or interviews.
Sooo brilliant mind that I am, I started thinking that if I was going to be either unemployed or settling for a job that I would be bored with, I might as well consider the thing I've been avoiding all these years! There are many reasons to avoid this surgery, which is why I have done it for so long: it's going to take a huge chunk of time to recover so I obviously couldn't do it while employed, painful, scary, very complicated procedure, what if it's worse after??
I started doing some research on doctors and called Dr. G again, not because I loved the guy but because I knew he was good. I also scheduled a few other appointments with different doctors. My first appointment was with a doctor who will remain nameless in NJ, who just does not have the experience with CMT or this type of procedure. When we met with him, he told me that it would be an extremely complicated surgery and he wasn't sure if I wasn't beyond repair. OMG I went home and cried that night and the next day...thinking that I waited all these years and maybe I waited too long and lost my opportunity. I've always thought of this as a last resort and now what would I do?
Thankfully my appointment with Dr. G was after this and he was extremely confident about the procedure. He has dealt with TONS of CMT patients before and done several surgeries similar to this one. Not only was I sure he was the man for the job, but I actually liked him now. I guess now he and I were both on the same page. He gave me the name of one his patients who I could contact and talk to about her experience (Thanks Tecile for this tip!). At this meeting sometime in November 2009, we took new x-rays which showed the progression of the problem. There's a new problem with my right ankle I wasn't even aware about. Dr. G. warned me that there are so many things that need to get fixed that he wouldn't be able to fix it all at once with one surgery because it would be too stressful on my foot and that I may need to go back in a couple of years from now to finish it. To sum it up, the problems are: extremely high arches, hammer toes, foot drop, foot turning inwards, problem with right ankle and other issues with nerves and muscles that are medical terms I can't remember LOL. Seriously I am keeping track of plenty!
So I scheduled a follow up with Dr. G for January 12 after he got back from his vacation for a final consultation and set up the surgery date and I also planned to meet with his patient that morning. It was great to meet with her and see how "cute" her foot is now...sorry, but when you live with ugly feet your whole life, it's kind of exciting to get new cute ones (and it's also better to focus on this stuff than on the stuff I'll talk about in a second). It was extremely helpful to meet with her to know what to expect pre/post-op and to hear about her recovery. I definitely found out some things that I definitely wasn't expecting...
- How I won't be able to shower or go to the bathroom while I'm in the hospital and possibly my first week at home. YUCK! I already feel bad for my mom who will be taking care of me...
- How hairy my leg will be when we take the cast off
- How painful the recovery process will be
- The length of time in recovery which is not set in stone for any patient
- Great! I really should've written this in January because now it's almost a month later and I can't remember all the things she told me...oh well...I'm sure it'll come back to me at some point.
After meeting with her, I headed downtown to meet with Dr. G. Since he was just recently back from vacation, he said he couldn't give me a date yet and would get back to me the following week. He also gave me some interesting pointers. He said I should not pity myself and that I need to actively work in my recovery. That the more of a fighter I am and the more I push myself (as advised by my physical therapists), the quicker my recovery can be. This was great to hear because 1. I don't pity myself, even though I'm sure I'll have my moments and 2. I had not even thought of being "active" in my recovery and how important that will be for me. The one thing he said that stayed with me (how could it not?) is that this will be really painful, to the point that I will probably come to regret having the surgery. Thanks!!! At least I am going in ready for the worst!
Unfortunately, when he called me the following week, it was to tell me he has made a very important decision in his career...that he will be retiring from surgery. That he will continue to work but will definitely be scaling down his responsibilities. That he will be happy to stand in the surgery room with whomever I choose, but he will not be the main surgeon. That if I was only having 1, he would be more than happy to make an exception but since I would be having 2 surgeries now and possibly more in the future, he thought I would be better off with someone who would follow my case from beginning to end....which I agree. I was just really disappointed that he waited so long to tell me. I had already finished all my research and chosen him and I had just been at his office the week before and he "forgot" to mention this very important fact. But he said he felt really bad and he would make some calls to doctors he trusted and discuss my case.
I obviously worried and stressed but thankfully we were leaving on a vacation to Mexico in 3 days so I decided I would just deal with it once I got back and put it off my mind. We had an amazing time on our vacation but I definitely had some reminders of why I'm so ready to have this done. Like how difficult it was to get out of the beach because there were so many sea shells in the sand that I needed help, or how I have to walk to the edge of the pool in my flip flops and immediately put them on once I get out because I can't stand on the ground, or even how hard it was to just stand in the pool floor, or how exhausted I was from dancing two nights in a row that I had to stay in the room and rest for a few hours before enjoying the day...many little things that people take for granted. But I will be so grateful when these things are no longer obstacles to overcome. Sometimes we have to go through situations to make us appreciate them. Maybe I wouldn't have valued these things had I been given them naturally, maybe I needed an extra push to realize one of the most amazing things that we can have in our lives: health.
So we get back to the US and Dr. G. recommended a new surgeon who also works for the Hospital for Joint Diseases. I call to make an appointment and he's in Haiti helping out with their relief efforts (I already like this guy!). John and I drove into the city on February 4 to meet with Dr. F. (who I should mention is good looking =) John says he looks like Nicolas Cage but I definitely think he looks cuter! LOL. Immediately we can tell he knows what he's talking about, that he's just as confident about doing this surgery, that he can really help me with my feet. Also, he's the Chief of Surgery for one of the departments at the hospital. Not bad!
His main concern is the pain I have on my thighs that I can't get rid of. He's not sure, as no doctor has been sure up to now, that the surgery will improve that pain at all. He thinks it's related to my hips so we do x-rays and everything looks normal. Doofus me! I completely forgot to tell him I broke my hips when I was 5. I didn't just forget to tell him, I forgot it happened! LOL..my mom reminded me as soon as I left the appointment and I had to send him an email. His suggestion is to try a lidocaine injection directly into my hips (sounds painful and I'm not sure of all the details here) to see if that will work. He also thinks I could try Aleve to see if it helps (which I never tried for that reason) but I won't be able to do that as we get closer to surgery because it thins your blood too much and that could be a risk during the surgery.
He will keep trying to help me find something that helps with this pain that refuses to go away because this is not common in the patients he usually sees.
He stresses some of the same facts I've already heard but he said something different that I liked. He thinks that depending on my recovery, we can try going in 6 weeks after the first surgery to do more surgery on the same foot to finish working on all the problems. I think this is so much better than doing it a couple years from now when I'll be back to a regular life. Since I am kind of stopping my life specifically for this surgery, let's get it all out of the way now. I really like the new doc, his staff, and I'm happy that he's younger and hopefully I'll be able to have him follow my progress for years to come.
Sooooo...March 17...St. Patrick's Day! 6 weeks. So much to do until then, we're moving to Shelton this week so I want to make sure we are settled, babies' birthday parties, my birthday...
I know John and my parents are ready to help me in this new chapter of my life. Although we all know it will be a difficult one, I think it will come with great rewards. I am thankful for all the support I have gotten, the phone calls, emails, text messages. For my mom, who will be the best nurse anybody can ever ask for. I thank you in advance because I know this will be just as hard on you, if not harder, to see me like that. For my dad, who may have to carry me around. For John, who gives me so much calm and strength. For my sisters, I wish you could be here!
I have to say that I can't wait to look back on this time...when I am walking around hardwood floors barefoot and wearing cute shoes and not tripping all the time (I am clumsy so we'll have to see about that).
So in preparation for the big day, I'm going to skip all the negative and painful things I could be thinking about and I'm going to focus on the good things I'm looking forward to doing.
When I was diagnosed with CMT in 2005, I was immediately referred to Dr. G, a doctor with the Hospital for Joint Diseases. At the time, I didn't like him because he had a one-track mind: SURGERY! Back then, I was certainly not ready. I wasn't even expecting to hear I had a genetic neurological condition, let alone talk about getting surgery! So I pushed the thought to the back of my mind. Over the last couple of years, my pain has certainly increased exponentially and more and more I had to think of that option that I pushed to the back of my mind.
Things in life happen for a reason because I was definitely not thinking surgery in 2009. But it's when I moved to Stamford, CT with John and commuted to/from work in NJ a couple times a week and my pain definitely hit a peak. So over the summer, I started to think that I definitely wouldn't be able to commute for too much longer and I started looking at jobs in CT. This also happens to be one of the worst economic times our country is going through so it was slim pickings and even then, hard to get a call back or interviews.
Sooo brilliant mind that I am, I started thinking that if I was going to be either unemployed or settling for a job that I would be bored with, I might as well consider the thing I've been avoiding all these years! There are many reasons to avoid this surgery, which is why I have done it for so long: it's going to take a huge chunk of time to recover so I obviously couldn't do it while employed, painful, scary, very complicated procedure, what if it's worse after??
I started doing some research on doctors and called Dr. G again, not because I loved the guy but because I knew he was good. I also scheduled a few other appointments with different doctors. My first appointment was with a doctor who will remain nameless in NJ, who just does not have the experience with CMT or this type of procedure. When we met with him, he told me that it would be an extremely complicated surgery and he wasn't sure if I wasn't beyond repair. OMG I went home and cried that night and the next day...thinking that I waited all these years and maybe I waited too long and lost my opportunity. I've always thought of this as a last resort and now what would I do?
Thankfully my appointment with Dr. G was after this and he was extremely confident about the procedure. He has dealt with TONS of CMT patients before and done several surgeries similar to this one. Not only was I sure he was the man for the job, but I actually liked him now. I guess now he and I were both on the same page. He gave me the name of one his patients who I could contact and talk to about her experience (Thanks Tecile for this tip!). At this meeting sometime in November 2009, we took new x-rays which showed the progression of the problem. There's a new problem with my right ankle I wasn't even aware about. Dr. G. warned me that there are so many things that need to get fixed that he wouldn't be able to fix it all at once with one surgery because it would be too stressful on my foot and that I may need to go back in a couple of years from now to finish it. To sum it up, the problems are: extremely high arches, hammer toes, foot drop, foot turning inwards, problem with right ankle and other issues with nerves and muscles that are medical terms I can't remember LOL. Seriously I am keeping track of plenty!
So I scheduled a follow up with Dr. G for January 12 after he got back from his vacation for a final consultation and set up the surgery date and I also planned to meet with his patient that morning. It was great to meet with her and see how "cute" her foot is now...sorry, but when you live with ugly feet your whole life, it's kind of exciting to get new cute ones (and it's also better to focus on this stuff than on the stuff I'll talk about in a second). It was extremely helpful to meet with her to know what to expect pre/post-op and to hear about her recovery. I definitely found out some things that I definitely wasn't expecting...
- How I won't be able to shower or go to the bathroom while I'm in the hospital and possibly my first week at home. YUCK! I already feel bad for my mom who will be taking care of me...
- How hairy my leg will be when we take the cast off
- How painful the recovery process will be
- The length of time in recovery which is not set in stone for any patient
- Great! I really should've written this in January because now it's almost a month later and I can't remember all the things she told me...oh well...I'm sure it'll come back to me at some point.
After meeting with her, I headed downtown to meet with Dr. G. Since he was just recently back from vacation, he said he couldn't give me a date yet and would get back to me the following week. He also gave me some interesting pointers. He said I should not pity myself and that I need to actively work in my recovery. That the more of a fighter I am and the more I push myself (as advised by my physical therapists), the quicker my recovery can be. This was great to hear because 1. I don't pity myself, even though I'm sure I'll have my moments and 2. I had not even thought of being "active" in my recovery and how important that will be for me. The one thing he said that stayed with me (how could it not?) is that this will be really painful, to the point that I will probably come to regret having the surgery. Thanks!!! At least I am going in ready for the worst!
Unfortunately, when he called me the following week, it was to tell me he has made a very important decision in his career...that he will be retiring from surgery. That he will continue to work but will definitely be scaling down his responsibilities. That he will be happy to stand in the surgery room with whomever I choose, but he will not be the main surgeon. That if I was only having 1, he would be more than happy to make an exception but since I would be having 2 surgeries now and possibly more in the future, he thought I would be better off with someone who would follow my case from beginning to end....which I agree. I was just really disappointed that he waited so long to tell me. I had already finished all my research and chosen him and I had just been at his office the week before and he "forgot" to mention this very important fact. But he said he felt really bad and he would make some calls to doctors he trusted and discuss my case.
I obviously worried and stressed but thankfully we were leaving on a vacation to Mexico in 3 days so I decided I would just deal with it once I got back and put it off my mind. We had an amazing time on our vacation but I definitely had some reminders of why I'm so ready to have this done. Like how difficult it was to get out of the beach because there were so many sea shells in the sand that I needed help, or how I have to walk to the edge of the pool in my flip flops and immediately put them on once I get out because I can't stand on the ground, or even how hard it was to just stand in the pool floor, or how exhausted I was from dancing two nights in a row that I had to stay in the room and rest for a few hours before enjoying the day...many little things that people take for granted. But I will be so grateful when these things are no longer obstacles to overcome. Sometimes we have to go through situations to make us appreciate them. Maybe I wouldn't have valued these things had I been given them naturally, maybe I needed an extra push to realize one of the most amazing things that we can have in our lives: health.
So we get back to the US and Dr. G. recommended a new surgeon who also works for the Hospital for Joint Diseases. I call to make an appointment and he's in Haiti helping out with their relief efforts (I already like this guy!). John and I drove into the city on February 4 to meet with Dr. F. (who I should mention is good looking =) John says he looks like Nicolas Cage but I definitely think he looks cuter! LOL. Immediately we can tell he knows what he's talking about, that he's just as confident about doing this surgery, that he can really help me with my feet. Also, he's the Chief of Surgery for one of the departments at the hospital. Not bad!
His main concern is the pain I have on my thighs that I can't get rid of. He's not sure, as no doctor has been sure up to now, that the surgery will improve that pain at all. He thinks it's related to my hips so we do x-rays and everything looks normal. Doofus me! I completely forgot to tell him I broke my hips when I was 5. I didn't just forget to tell him, I forgot it happened! LOL..my mom reminded me as soon as I left the appointment and I had to send him an email. His suggestion is to try a lidocaine injection directly into my hips (sounds painful and I'm not sure of all the details here) to see if that will work. He also thinks I could try Aleve to see if it helps (which I never tried for that reason) but I won't be able to do that as we get closer to surgery because it thins your blood too much and that could be a risk during the surgery.
He will keep trying to help me find something that helps with this pain that refuses to go away because this is not common in the patients he usually sees.
He stresses some of the same facts I've already heard but he said something different that I liked. He thinks that depending on my recovery, we can try going in 6 weeks after the first surgery to do more surgery on the same foot to finish working on all the problems. I think this is so much better than doing it a couple years from now when I'll be back to a regular life. Since I am kind of stopping my life specifically for this surgery, let's get it all out of the way now. I really like the new doc, his staff, and I'm happy that he's younger and hopefully I'll be able to have him follow my progress for years to come.
Sooooo...March 17...St. Patrick's Day! 6 weeks. So much to do until then, we're moving to Shelton this week so I want to make sure we are settled, babies' birthday parties, my birthday...
I know John and my parents are ready to help me in this new chapter of my life. Although we all know it will be a difficult one, I think it will come with great rewards. I am thankful for all the support I have gotten, the phone calls, emails, text messages. For my mom, who will be the best nurse anybody can ever ask for. I thank you in advance because I know this will be just as hard on you, if not harder, to see me like that. For my dad, who may have to carry me around. For John, who gives me so much calm and strength. For my sisters, I wish you could be here!
I have to say that I can't wait to look back on this time...when I am walking around hardwood floors barefoot and wearing cute shoes and not tripping all the time (I am clumsy so we'll have to see about that).
So in preparation for the big day, I'm going to skip all the negative and painful things I could be thinking about and I'm going to focus on the good things I'm looking forward to doing.
Friday, January 15, 2010
This is my journey...
The reason I decided to write about this is because I have a terrible memory so I thought I should get a diary, I would like to look back on this a year or two from now and remember where I was. But I think I would be too lazy to write it down so typing is easier. Well, since I'm gonna type it then I would like to share it with my sisters, parents, and boyfriend...so why not just do this? I'm very comfortable talking about this stuff and for me, talking helps. It's definitely therapeutic. So here it is...
I feel that I have been a very fortunate and happy person. Fortunate to have amazing parents who raised my sisters and I in a happy home. Blessed to have a great belief system and faith in God. So happy to have found someone who loves and supports me.
We had a great childhood, lots of time playing on the streets with friends, going to the beach, being at grandma’s house with all the crazy laughter and loudness, even hanging out at the farm here and there...building a solid foundation that would prepare us for the obstacles later in life.
We moved to the US in 1996, in the middle of my teen years. I’ve always been the good, responsible, A+ student so I applied myself and learned the language quickly and grew to love this country to be my home. I continued to push myself in college and got myself a job in Manhattan where I would gain great work experience.
I’d say things started to change a bit in college, can’t say exactly when but I started to feel a lot of pain on the bottom of my feet and calluses started to form under the balls of both my right and left feet. At first, I would soak my feet and cut the calluses off with scissors but the calluses always grew back. My technique wasn’t the best and there were times when I’d cut deeper than necessary and end up hurting myself more. Eventually, I came to find a doctor who I truly appreciate and visit regularly to this day, Dr. A, who uses a blade to shave the calluses off (I feel absolutely no pain while he is doing it). He has been extremely important in helping me throughout this process…as you will see.
My commute to NY was pretty grueling and in college, I would go into the city, walk uphill to the bus (sometimes stand in it through traffic into the city), walk to the train (sometimes stand in the train til my stop), and finally walk to the office. Then I would do it all back home, get in my car, sit in traffic and drive to campus to take night classes. In a way, I’m glad things were just starting then because I would never be able to do that today.
I went through a pretty stressful situation in college and this is when CMT came into my life. It was there all along because it’s genetic but until then, it hadn’t really come out. My feet started to get worse and I started to visit Dr. A. a lot more to deal with my calluses. Shoes became more impossible to find and even worse, wear! It was hard in the summer, because my feet couldn’t hold flip flops. It was hard at work because I couldn’t find decent looking shoes for the life of me. And in the winter, it was hard to find boots that my high arches could fit into.
At this point, my pain had escalated to feeling it with every step that I took, 24 hours a day (obviously not when I was asleep), 7 days a week. One day, on a regular visit with Dr. A. I noticed that he was touching my toes and I couldn’t feel that he was touching me. So he poked my toes with a needle and we realized that I had lost some sensitivity. This is the first time I heard of Charcot-Marie-Tooth (CMT), which is a neurological disorder. This is when my search for answers begun. I felt all this pain but no doctor could ever give me a clear direction. At least now I had a clue of what to look for. I saw so many doctors, podiatrists, neurologists, geneticists, etc in my search for a diagnosis.
After seeing many doctors, I stumbled upon a geneticist and his team at the Hospital for Joint Diseases who ran some more specific (and at times, painful) tests, including a blood test that would officially diagnose me as a CMT Type 1A patient. It was a relief to know...to be able to give it a name...to read about all the symptons...to read similar stories. At the same time, the diagnosis is that CMT is a progressive and degenerative condition with no cure or specific treatment or medication, so it would continue to get progressively worse and there was no sure way to stop or treat it.
I think this is when faith in God comes in and the belief that everything happens for a reason. I was blessed to be raised in a spiritual home where we believe in God and his love for all his creatures. We believe that we are all here to learn a lesson, to grow spiritually and to learn to love one another. CMT is here to help me grow as a person and to help me correct wrongs that I did in the past, in another life. DISCLAIMER: I'm not sure who will be reading this and you don't have to agree with what I am saying here but this is what I believe in and I know I am better person because of it so please don't rain on my parade LOL.
Because of Spiritism, I have never once questioned: WHY ME? I am ok and prepared to face whatever situations may come my way, but there are obviously times when emotions spill over and you can get a good cry out and then back to normal.
Eventually, I have started to feel a lot more pain in my thighs, a lot more cramping on my calves and my feet have gotten more deformed. Now, I can feel myself get exhausted from a simple supermarket trip or standing in line for a few minutes. I need a few days to recover from any extra activity outside my normal routine. I would not dare go to a theme park or zoo and walk around all day because I know that 1. I wouldn't be able to do it for more than a couple hours, 2. I would be in even more pain than I usually am. If I did want to go (which hasn't happened in a while), I would be willing to rent a wheelchair for the day to enjoy.
I think one of the hardest things is that I don't really think that people believe you're in as much pain as you say you are or that you're just lazy. I'm young, pretty (sometimes...lol), talkative, outgoing...how can I possibly really have what I say I have? But I don't look like I'm in pain...how do I explain that? Well...for me, I feel pain every minute of my life, so how can I live my entire life showing how much pain I'm in, how miserable would that be? You kindda get used to it and learn to deal so that it doesn't normally affect my personality that much. On days when things are worse, then it's impossible to hide it but even then, an outsider can't see!!! It's not like I have an open wound, or like so many people have heard about CMT, so you just have to believe me. Recently, I have had a few people dispute my "handicapped" parking because I couldn't possibly need the help to park closer...those were fun experiences!!!
Please don't feel sorry for me...I've had and will continue to have a very full life. I lived up my years in college, partied with friends, traveled back home and danced all night to Ivete and Banda Eva (which had its consequences later lol), etc. I've gotten older and my interests have changed. I don't enjoy the same things I used to like going club on a regular basis. Now, I'd much rather hang out at home and have game nights with our friends. I don't care if these little adjustments are due to the fact that I am maturing or CMT. I'm still happy either way. Lately, I've been working on my prayers and trying to just be grateful for this opportunity that I have to learn...learn from my mistakes and work through my own karma.
Recently, I've decided to have surgery on my feet. After trying every possible recommendation that might help the pain (i.e. physical therapy, acupuncture, pain medication, yoga, etc) and finding the effects only last for a short while, surgery is really the last resort. So now I am unemployed and just waiting for the surgery to be scheduled. I know it will be a long year ahead of me but I am ready....more on that on the next post!
CMT may have taken me, but it's not going to beat me!
I feel that I have been a very fortunate and happy person. Fortunate to have amazing parents who raised my sisters and I in a happy home. Blessed to have a great belief system and faith in God. So happy to have found someone who loves and supports me.
We had a great childhood, lots of time playing on the streets with friends, going to the beach, being at grandma’s house with all the crazy laughter and loudness, even hanging out at the farm here and there...building a solid foundation that would prepare us for the obstacles later in life.
We moved to the US in 1996, in the middle of my teen years. I’ve always been the good, responsible, A+ student so I applied myself and learned the language quickly and grew to love this country to be my home. I continued to push myself in college and got myself a job in Manhattan where I would gain great work experience.
I’d say things started to change a bit in college, can’t say exactly when but I started to feel a lot of pain on the bottom of my feet and calluses started to form under the balls of both my right and left feet. At first, I would soak my feet and cut the calluses off with scissors but the calluses always grew back. My technique wasn’t the best and there were times when I’d cut deeper than necessary and end up hurting myself more. Eventually, I came to find a doctor who I truly appreciate and visit regularly to this day, Dr. A, who uses a blade to shave the calluses off (I feel absolutely no pain while he is doing it). He has been extremely important in helping me throughout this process…as you will see.
My commute to NY was pretty grueling and in college, I would go into the city, walk uphill to the bus (sometimes stand in it through traffic into the city), walk to the train (sometimes stand in the train til my stop), and finally walk to the office. Then I would do it all back home, get in my car, sit in traffic and drive to campus to take night classes. In a way, I’m glad things were just starting then because I would never be able to do that today.
I went through a pretty stressful situation in college and this is when CMT came into my life. It was there all along because it’s genetic but until then, it hadn’t really come out. My feet started to get worse and I started to visit Dr. A. a lot more to deal with my calluses. Shoes became more impossible to find and even worse, wear! It was hard in the summer, because my feet couldn’t hold flip flops. It was hard at work because I couldn’t find decent looking shoes for the life of me. And in the winter, it was hard to find boots that my high arches could fit into.
At this point, my pain had escalated to feeling it with every step that I took, 24 hours a day (obviously not when I was asleep), 7 days a week. One day, on a regular visit with Dr. A. I noticed that he was touching my toes and I couldn’t feel that he was touching me. So he poked my toes with a needle and we realized that I had lost some sensitivity. This is the first time I heard of Charcot-Marie-Tooth (CMT), which is a neurological disorder. This is when my search for answers begun. I felt all this pain but no doctor could ever give me a clear direction. At least now I had a clue of what to look for. I saw so many doctors, podiatrists, neurologists, geneticists, etc in my search for a diagnosis.
After seeing many doctors, I stumbled upon a geneticist and his team at the Hospital for Joint Diseases who ran some more specific (and at times, painful) tests, including a blood test that would officially diagnose me as a CMT Type 1A patient. It was a relief to know...to be able to give it a name...to read about all the symptons...to read similar stories. At the same time, the diagnosis is that CMT is a progressive and degenerative condition with no cure or specific treatment or medication, so it would continue to get progressively worse and there was no sure way to stop or treat it.
I think this is when faith in God comes in and the belief that everything happens for a reason. I was blessed to be raised in a spiritual home where we believe in God and his love for all his creatures. We believe that we are all here to learn a lesson, to grow spiritually and to learn to love one another. CMT is here to help me grow as a person and to help me correct wrongs that I did in the past, in another life. DISCLAIMER: I'm not sure who will be reading this and you don't have to agree with what I am saying here but this is what I believe in and I know I am better person because of it so please don't rain on my parade LOL.
Because of Spiritism, I have never once questioned: WHY ME? I am ok and prepared to face whatever situations may come my way, but there are obviously times when emotions spill over and you can get a good cry out and then back to normal.
Eventually, I have started to feel a lot more pain in my thighs, a lot more cramping on my calves and my feet have gotten more deformed. Now, I can feel myself get exhausted from a simple supermarket trip or standing in line for a few minutes. I need a few days to recover from any extra activity outside my normal routine. I would not dare go to a theme park or zoo and walk around all day because I know that 1. I wouldn't be able to do it for more than a couple hours, 2. I would be in even more pain than I usually am. If I did want to go (which hasn't happened in a while), I would be willing to rent a wheelchair for the day to enjoy.
I think one of the hardest things is that I don't really think that people believe you're in as much pain as you say you are or that you're just lazy. I'm young, pretty (sometimes...lol), talkative, outgoing...how can I possibly really have what I say I have? But I don't look like I'm in pain...how do I explain that? Well...for me, I feel pain every minute of my life, so how can I live my entire life showing how much pain I'm in, how miserable would that be? You kindda get used to it and learn to deal so that it doesn't normally affect my personality that much. On days when things are worse, then it's impossible to hide it but even then, an outsider can't see!!! It's not like I have an open wound, or like so many people have heard about CMT, so you just have to believe me. Recently, I have had a few people dispute my "handicapped" parking because I couldn't possibly need the help to park closer...those were fun experiences!!!
Please don't feel sorry for me...I've had and will continue to have a very full life. I lived up my years in college, partied with friends, traveled back home and danced all night to Ivete and Banda Eva (which had its consequences later lol), etc. I've gotten older and my interests have changed. I don't enjoy the same things I used to like going club on a regular basis. Now, I'd much rather hang out at home and have game nights with our friends. I don't care if these little adjustments are due to the fact that I am maturing or CMT. I'm still happy either way. Lately, I've been working on my prayers and trying to just be grateful for this opportunity that I have to learn...learn from my mistakes and work through my own karma.
Recently, I've decided to have surgery on my feet. After trying every possible recommendation that might help the pain (i.e. physical therapy, acupuncture, pain medication, yoga, etc) and finding the effects only last for a short while, surgery is really the last resort. So now I am unemployed and just waiting for the surgery to be scheduled. I know it will be a long year ahead of me but I am ready....more on that on the next post!
CMT may have taken me, but it's not going to beat me!
What is Charcot-Marie-Tooth?
Charcot-Marie-Tooth, or CMT, is the most commonly inherited neurological disorder and is found world-wide in all races and ethnic groups. Discovered in 1886 by three physicians, Jean-Martin-Charcot, Pierre Marie, and Howard Henry Tooth, CMT affects an estimated 2.6 million people.
CMT patients slowly lose normal use of their feet/legs and hands/arms as nerves to the extremities degenerate and the muscles in the extremities become weakened because of the loss of stimulation by the affected nerves. Many patients also have some loss of sensory nerve function.
CMT is one of the 40 diseases covered by the MDA, but unlike muscular dystrophy, in which the defect is in the muscles, CMT is a disorder in which the defect is in the nerves that control the muscles.
CMT usually isn’t life-threatening and almost never affects brain function. It is not contagious, but it is hereditary and can be passed down from one generation to the next. CMT...
* ...is also known as peroneal muscular atrophy (PMA) and hereditary motor sensory neuropathy (HMSN).
* ...is slowly progressive, causing deterioration of peripheral nerves which control sensory information and muscle function of the foot/lower leg and hand/forearm.
* ...causes degeneration of peroneal muscles (located on the front of the leg below the knees).
* ...causes foot-drop walking gait, foot bone abnormalities, high arches and hammertoes, problems with balance, problems with hand function, occasional lower leg and forearm muscle cramping, loss of some normal reflexes, scoliosis (curvature of the spine) and sometimes, breathing difficulties.
* ...does not affect life expectancy, but can, in rare instances, cause severe disability.
* ...has no cure, although physical therapy, occupational therapy and moderate physical activity are beneficial.
* ...is sometimes surgically treated.
* ...is usually inherited in an autosomal dominant pattern, which means if one parent has CMT there is a 50/50 chance of each child inheriting the disorder.
* ...may become worse if certain neurotoxic drugs are taken.
* ...can vary greatly in severity, even within the same family.
* ...can now be diagnosed by a blood test (CMT types: 1A, 1B, 1C, 1D, 1E, 1F, 1X, 2A, 2B, 2E, 2F, 2I, 2J, 2K, 4A, 4C, 4E, 4F, 4J, HNPP, CHN, and DSN).
CMT patients slowly lose normal use of their feet/legs and hands/arms as nerves to the extremities degenerate and the muscles in the extremities become weakened because of the loss of stimulation by the affected nerves. Many patients also have some loss of sensory nerve function.
CMT is one of the 40 diseases covered by the MDA, but unlike muscular dystrophy, in which the defect is in the muscles, CMT is a disorder in which the defect is in the nerves that control the muscles.
CMT usually isn’t life-threatening and almost never affects brain function. It is not contagious, but it is hereditary and can be passed down from one generation to the next. CMT...
* ...is also known as peroneal muscular atrophy (PMA) and hereditary motor sensory neuropathy (HMSN).
* ...is slowly progressive, causing deterioration of peripheral nerves which control sensory information and muscle function of the foot/lower leg and hand/forearm.
* ...causes degeneration of peroneal muscles (located on the front of the leg below the knees).
* ...causes foot-drop walking gait, foot bone abnormalities, high arches and hammertoes, problems with balance, problems with hand function, occasional lower leg and forearm muscle cramping, loss of some normal reflexes, scoliosis (curvature of the spine) and sometimes, breathing difficulties.
* ...does not affect life expectancy, but can, in rare instances, cause severe disability.
* ...has no cure, although physical therapy, occupational therapy and moderate physical activity are beneficial.
* ...is sometimes surgically treated.
* ...is usually inherited in an autosomal dominant pattern, which means if one parent has CMT there is a 50/50 chance of each child inheriting the disorder.
* ...may become worse if certain neurotoxic drugs are taken.
* ...can vary greatly in severity, even within the same family.
* ...can now be diagnosed by a blood test (CMT types: 1A, 1B, 1C, 1D, 1E, 1F, 1X, 2A, 2B, 2E, 2F, 2I, 2J, 2K, 4A, 4C, 4E, 4F, 4J, HNPP, CHN, and DSN).
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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 :)