About a year ago, I set out on this journey to take care of myself and my body, by having 2 (or possibly 4) painful surgeries that would help me relieve constant pain in the balls of my feet. At that time, I was anxious, I was afraid of the unknown, I was quitting my job because of a move to CT and to allow myself time to fully recover without worrying that I had to answer to someone, and I was basically diving in head first, not knowing how cold or rocky the water might be.
The only sure thing I had was faith that everything would be ok and that I had God on my side. I won't say it's been an easy year, it's been full of ups and downs, pain and relief, moments of tears and moments of laughter, going through the first procedure and seeing how successful it went and how well my foot is doing now. I've had a chance to stop and reflect on my life, had an opportunity to get closer and bond with my sisters, lean on my parents for their love and support, see John and I overcome another hurdle together which will continue to make us stronger for the future, and see who my true friends are.
As I approach the end of this journey, God's been giving me MANY reasons to smile (and Lord knows I need them)....I have a wonderful Caribbean cruise to look forward to on my birthday in March when I'll get to introduce my new feet to my favorite thing in the world - a beach! Then the most perfect job appears out of nowhere and they decide to wait for me to recover, and the latest gift He's given me...I get a letter from Social Security this weekend that they have made a decision that is fully favorable to me!!!!!!!!!!! This is just soooo unbelievable!! SS has denied my disability claim TWICE that I had to hire an attorney and we've been patiently waiting for a hearing date sometime next year!!! Then out of thin air, I get this news...There's no other explanation than the Big Guy upstairs showing me that even though sometimes we may be dealt a difficult hand in life, He is here for us and I am so grateful for that...
I just wanted to write this entry to say keep the faith, believe in something greater than yourself, and always have hope. If at times it seems He has forgotten us, then maybe it's just our turn to learn a lesson in life, and sure enough, in due time, things will appear out of nowhere to show us we've had our down so there's nowhere else to go but up!
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My life with CMT and trying to deal with constant chronic pain with a positive attitude...
Showing posts with label Prayers. Show all posts
Showing posts with label Prayers. Show all posts
Wednesday, October 27, 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!
Labels:
Faith,
Frustration,
Hospital for Joint Diseases,
Pain,
Prayers,
Steroid Injection,
X-Rays
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.
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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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