I can't believe it's been almost 3 months since I last wrote on my blog. I have had a million things to write about, but life kinda got in the way. I will keep this short so I don't bore you to death or quit before I can finish it...
I have had an insane summer...surgery in July, return to work after two weeks, then John and I were very blessed to find our perfect home and purchase it in the beginning of August, spent that month renovating it, moved in on the weekend that "Irene" decided to hit Connecticut, lost power for one week so we had to keep going back and forth to our empty apartment just to shower and use the fridge, and on top of all that, I have been planning 7 work events for September and October. If you got tired just reading this, imagine living it, with a condition that already exhausts you for doing the smallest tasks?
Oh and did I mention how I totally missed CMT Awareness Month? Really annoyed about that...was just too insane to think or write about it...
Unfortunately, my body couldn't take it anymore and crashed in a really bad way a little over two weeks ago and it was my worst experience with CMT to date...I seriously considered going to the hospital because even my strongest "back-up" pain pills did not work. Eventually, my doctor was able to help me figure out what medicine might work, but it's now almost 3 weeks later and I feel like I'm still recovering.
To make matters even more "interesting" my job decided that if I could no longer attend the events (I asked to not attend any event in the month of October for fear of the pain flaring up again), which are a major part of my job, that they might have to replace me!!!!! STUNNED SILENCE! Thankfully, that situation worked itself out for the best...they really love me there and did not want to see me go so they've offered me a part-time position where I get to leave work at 2:30pm everyday with a very reasonable package. Even though we don't understand His plans all the time, things seem to have a way of working themselves out sometimes...
My new schedule will begin this Monday and I CANNOT wait to get home early, get some rest, and then actually try to live a little. Hopefully, I'll be able to come back and write lots more because this is the condensed version...I have a lot more to say about everything...but let's wrap it up here and hopefully I'll return very shortly :)
Showing posts with label Nerve Pain. Show all posts
Showing posts with label Nerve Pain. Show all posts
Wednesday, October 12, 2011
Sunday, July 10, 2011
Up and About....
Thankfully everything went really well with my surgery on Friday...the hardest thing about the procedure was waking up when it was time to go home. I was just so comfortable and warm that the nurse that kept trying to wake me up really annoyed me. My Dr. was really pleased with the surgery and said everything went great. I guess compared to the two uber-complicated procedures last year, you could tell this was a piece of cake when we were in the car and driving home at 11:30am of the same day!!!!
I slept on and off all day Friday, which really messed up my body clock; I could barely sleep that night. And since my first day/nights have always been the hardest, this also couldn't be any different, even if on a smaller scale. Part of the reason I couldn't sleep is that the nerve on my right callus kept "zinging" me all night long, it was like aftershocks over and over that couldn't allow me to fall asleep.
Day 2 went much better and I fought to stay awake all day. As per doctor's orders, I put on shoes and moved around the house a little bit. He said I could use crutches, but since I have no balance I chose to go with my good friend "The Walker." It was a little strange to walk so quickly post-op but at the same time I'm so relieved things are so much easier this time around. I definitely couldn't deal with 6 weeks in a cast right now. Night 2 went much better than the first and was very restful and today I'm catching up on my emails and all my reading...
I want to share something I just found out about through a great CMT group on Facebook. It was my first time reading The Spoon Theory but it definitely won't be the last. Christine Miserandino describes her "invisible disease" in a way that really connected with me and maybe in a way that I haven't been able to express to others before. So please take a few minutes and read The Spoon Theory HERE.
What do you think?
I slept on and off all day Friday, which really messed up my body clock; I could barely sleep that night. And since my first day/nights have always been the hardest, this also couldn't be any different, even if on a smaller scale. Part of the reason I couldn't sleep is that the nerve on my right callus kept "zinging" me all night long, it was like aftershocks over and over that couldn't allow me to fall asleep.
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| Slowly but surely! |
I want to share something I just found out about through a great CMT group on Facebook. It was my first time reading The Spoon Theory but it definitely won't be the last. Christine Miserandino describes her "invisible disease" in a way that really connected with me and maybe in a way that I haven't been able to express to others before. So please take a few minutes and read The Spoon Theory HERE.
What do you think?
Thursday, March 17, 2011
Lost ....
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| Introducing them to a hammock |
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| Introducing them to the good life |
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| Introducing them to the pool |
And then, what about work? I'm sooo exhausted ALL the time, the 33809 pills I'm taking are not really helping and are not really giving me anymore energy. I also feel like my muscle and nerve pains are getting worse. How much longer can I do this? Should I ditch it and go for disability? But what about buying a house, going on vacations? I'm still so young and I truly enjoy working and the money doesn't hurt. I don't think I'm ready to give up working yet...
So many questions and so few answers. I've spent the last few days in an emotional funk but I think I'm finally finding my way out. I think dealing with constant chronic pain can have its ups and downs and it's hard to stay positive 100% of the time. I've had some really positive conversations this week with friends and especially my mom (Thanks for letting me talk your ear off for 2 hours and 10 minutes last night...LOL). I'm so grateful to have a strong faith in God because that's where I find the strength when I feel I'm running a little low on it.
For any CMT mommies who may read this...did you struggle with the thought of having children because of the fatigue factor? How did you work through that?
Sunday, February 13, 2011
My Journey Through Surgery
I met Tim like most other CMT'ers I've met - through the amazing world of the internet. Tim's story is actually very similar to mine, we're the same age, both have CMT Type 1A and he is getting ready to have his reconstructive foot surgery this week. He asked me to write an entry for his blog, which you can see below or by clicking here.
You can also check out his blog here: CMT creates: music. Good luck with your surgery Tim!!
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A year ago I set out on a journey, one that would be long and painful but one that should be very rewarding once I reached my destination. I am 29 years old and was diagnosed with CMT Type 1A in 2005. At that time, I met with a surgeon who could correct my insanely high arches, but there was a glitch...I wasn't ready! I wasn't even ready yet to know what CMT was. So I pushed it in a drawer and went on with my life. As time passed, my arches got even higher (my shoe sizes went from a size 6.5 to a 3!!) and the calluses in the balls of both my feet were worse. I had to go to the doctor on a monthly basis to have them shaved off and even then, I still hurt with every step I took. I also developed this terrible pressure pain on both thighs, my ability to walk or stand for long periods of time decreased, and I had no choice but to pull CMT out of that drawer and find the time to deal with it.
I did everything I could possibly do before having reconstructive surgery: physical therapy, acupuncture, several pairs of orthotics, expensive shoes, you name it. Life sometimes has a way of working itself out and I was moving to CT from NJ and had to quit my job. Since the job market isn't all that great and I didn't see any interesting jobs in my field (Marketing), I thought it would be a perfect opportunity to take time off and invest on my health by having two reconstructive surgeries, one on each foot.
I started my search for surgeons again around November 2009 and when I finally selected the best surgeon at the end of the year, he announced to me in January that he was retiring. I was frustrated and annoyed with him, but he promised that he would find me a great surgeon and that he would be there during both surgeries (and he kept his promise!). In February 2010, I met with Dr. Feldman, whom I immediately liked. He thought it would be a good idea to try an injection into my hips to see if it would help my thigh pain. Unfortunately the doctor that administered the injection hit a nerve and I was in so much pain that we couldn't go through with my March 17 surgery.
Finally on April 16, we were all set. No more delays. I had never been hospitalized or had any procedures done, so I was a bit anxious about diving into this unknown. On that day however, I was pretty calm. For me, the hardest part was making the decision. Once the decision was made, I was ready to go. I also prepared myself for the worst case scenario. I talked to several CMT patients who had undergone this surgery before me. I was ready for a year or longer in recovery. And most importantly, I was ready for the pain. The first night was extremely painful and difficult, there were a lot of tears. But I prepared for this journey with the support of family, friends, and loved ones, so I was not alone. Even though I live with my boyfriend, I prepared to spend about 2 months with my parents each time because they would be able to be with me almost all of the time. Believe it or not, time went a lot faster than I expected. Before I knew it, I could move again and I could start to step down with the walking boot. I returned home and started physical therapy. Within 3 months, my foot was no longer swollen (I mean, AT ALL). And almost immediately I could tell the difference between this new foot and the old foot, and was sure I had made the right decision.
Then, I started preparing myself for surgery #2, but this time, I felt more confident because I knew what to expect and the first surgery went so well. I knew what my timetable would be, how my body would react to the meds, I knew that even when time seemed to drag, that it would all fly by and I would be back to walking again. So we scheduled it for September 20. And just out of nowhere, 2 weeks before the big day, my surgeon's office called to move it to September 22, which wasn't a big deal but was kind of annoying. I point this out because life works in "mysterious" ways. One of the main things I have had with me through the process is faith - that everything would be ok. Six days before my surgery a recruiter reached out to me with a perfect job opportunity. And wouldn't you know that I interviewed on September 20 and 21, and actually landed the job!!!! They decided to wait for me for 2 and a half months while I recover!!! If this isn't a gift from above, I don't know what is.
Getting the job just made me want to get the process over with even more quickly. The first time around, I knew I would still go through a second surgery so I was pretty calm. But now that I have something to look forward to, I have been anxious for time to pass. It's now been 2 months since my second surgery and I've been moving around with the walking boot, soon I'll just be walking on my own.
I can't believe this year has gone by so quickly. I think it definitely has been my most trying year, by far. But as I get close to that finish line, I feel a sense of accomplishment. I really did what I set out to do. I feel that I am coming full circle. I won't say it's been an easy and rosy journey, it's been full of tears and many times over the summer, resentment that I could not go outside to enjoy my favorite season. But I'm almost done and I have learned so many lessons in life! Hopefully my new feet will be happier than my last ones and healthy for a long time to come!
You can also check out his blog here: CMT creates: music. Good luck with your surgery Tim!!
-----------------------------------------------------------------
A year ago I set out on a journey, one that would be long and painful but one that should be very rewarding once I reached my destination. I am 29 years old and was diagnosed with CMT Type 1A in 2005. At that time, I met with a surgeon who could correct my insanely high arches, but there was a glitch...I wasn't ready! I wasn't even ready yet to know what CMT was. So I pushed it in a drawer and went on with my life. As time passed, my arches got even higher (my shoe sizes went from a size 6.5 to a 3!!) and the calluses in the balls of both my feet were worse. I had to go to the doctor on a monthly basis to have them shaved off and even then, I still hurt with every step I took. I also developed this terrible pressure pain on both thighs, my ability to walk or stand for long periods of time decreased, and I had no choice but to pull CMT out of that drawer and find the time to deal with it.
I did everything I could possibly do before having reconstructive surgery: physical therapy, acupuncture, several pairs of orthotics, expensive shoes, you name it. Life sometimes has a way of working itself out and I was moving to CT from NJ and had to quit my job. Since the job market isn't all that great and I didn't see any interesting jobs in my field (Marketing), I thought it would be a perfect opportunity to take time off and invest on my health by having two reconstructive surgeries, one on each foot.
I started my search for surgeons again around November 2009 and when I finally selected the best surgeon at the end of the year, he announced to me in January that he was retiring. I was frustrated and annoyed with him, but he promised that he would find me a great surgeon and that he would be there during both surgeries (and he kept his promise!). In February 2010, I met with Dr. Feldman, whom I immediately liked. He thought it would be a good idea to try an injection into my hips to see if it would help my thigh pain. Unfortunately the doctor that administered the injection hit a nerve and I was in so much pain that we couldn't go through with my March 17 surgery.
Finally on April 16, we were all set. No more delays. I had never been hospitalized or had any procedures done, so I was a bit anxious about diving into this unknown. On that day however, I was pretty calm. For me, the hardest part was making the decision. Once the decision was made, I was ready to go. I also prepared myself for the worst case scenario. I talked to several CMT patients who had undergone this surgery before me. I was ready for a year or longer in recovery. And most importantly, I was ready for the pain. The first night was extremely painful and difficult, there were a lot of tears. But I prepared for this journey with the support of family, friends, and loved ones, so I was not alone. Even though I live with my boyfriend, I prepared to spend about 2 months with my parents each time because they would be able to be with me almost all of the time. Believe it or not, time went a lot faster than I expected. Before I knew it, I could move again and I could start to step down with the walking boot. I returned home and started physical therapy. Within 3 months, my foot was no longer swollen (I mean, AT ALL). And almost immediately I could tell the difference between this new foot and the old foot, and was sure I had made the right decision.
Then, I started preparing myself for surgery #2, but this time, I felt more confident because I knew what to expect and the first surgery went so well. I knew what my timetable would be, how my body would react to the meds, I knew that even when time seemed to drag, that it would all fly by and I would be back to walking again. So we scheduled it for September 20. And just out of nowhere, 2 weeks before the big day, my surgeon's office called to move it to September 22, which wasn't a big deal but was kind of annoying. I point this out because life works in "mysterious" ways. One of the main things I have had with me through the process is faith - that everything would be ok. Six days before my surgery a recruiter reached out to me with a perfect job opportunity. And wouldn't you know that I interviewed on September 20 and 21, and actually landed the job!!!! They decided to wait for me for 2 and a half months while I recover!!! If this isn't a gift from above, I don't know what is.
Getting the job just made me want to get the process over with even more quickly. The first time around, I knew I would still go through a second surgery so I was pretty calm. But now that I have something to look forward to, I have been anxious for time to pass. It's now been 2 months since my second surgery and I've been moving around with the walking boot, soon I'll just be walking on my own.
I can't believe this year has gone by so quickly. I think it definitely has been my most trying year, by far. But as I get close to that finish line, I feel a sense of accomplishment. I really did what I set out to do. I feel that I am coming full circle. I won't say it's been an easy and rosy journey, it's been full of tears and many times over the summer, resentment that I could not go outside to enjoy my favorite season. But I'm almost done and I have learned so many lessons in life! Hopefully my new feet will be happier than my last ones and healthy for a long time to come!
Wednesday, November 24, 2010
New Pain Management Doctor
Yesterday was a very hectic day in NYC. We started out going to see Dr. Feldman for a follow up appointment and thankfully everything is ok with my foot. The x-rays don't show anything unusual. He says I just overdid it and even though now I'm full weight-bearing and off the boot into regular shoes, he just asked that I take it easy for a few days so my foot can rest. Actually that's all I've done since Friday night. I didn't put my foot down on Saturday, Sunday or Monday and yesterday, after having to walk a bit, it kinda started hurting again towards the end of the day. Note to self: no more going to see 3 houses in one day for a little while.
We finished at 10:30am and my appointment with the new pain management doc wasn't until 1:30pm so I called their office and thankfully they could fit us in at 11:30. Well, we ended up being there for two and a half hours!!! When we first got there, I had to fill out my new patient forms. Then I got called in and had the doctor's undivided attention for about an hour. I must say that I really liked this guy...he mentioned new, innovative ideas that I had NEVER heard from any other doc in 6 years (unfortunately he spoke in scientific terms a lot so I don't remember too many specifics to list here). I faxed all my CMT medical papers in advance so he could become familiarized with it before I got there and he definitely knew what he was talking about, without being an expert on the subject. He is very familiar with neuropathies, genetic conditions, and treatment-less diseases.
Well, we already know CMT has no cure or treatment, so he doesn't focus on trying to treat CMT, he focuses instead on treating the patient, ME. But in the meantime, who knows if he can't help CMT, even a little bit? We went through my personal medical history and he thought of many possible scenarios. He ordered a LONG list of tests because he is going to examine all blood and urine test results to have a complete picture to know how to proceed. He was extremely thorough in his examination and because of our discussion I am really hopeful!!!! I strongly believe that this man is going to help me. I am not saying I believe he's going to fix all my problems. But I believe he is going to help me somehow, if not with the pain entirely, then help me have more energy, or sleep better, or not feel as exhausted and fatigued so easily. I'd like to point out that I am not naive about the possibilities, I just refuse to give up hope that one day I will live a better life.
I mentioned how horrible my thigh pain is and how I'm starting to wonder whether it's CMT related. One of the most interesting things he brought up was the fact that I'm taking so much Lyrica to help with my nerve pain that the medication could be creating these symptoms. He pulled out his little Rx book and the Lyrica description was extremely interesting and asked that you take follow up tests, which I have not done, and which thankfully were already on his long list of tests. So we are going to look closely at this Lyrica issue to see if they are related at all. Only thing is that my little sis who also has the thigh pain, does not take Lyrica. But also interesting is that this thigh pain has not been with me from the beginning, it's been about 2 years, which is the exact same amount of time I've been taking these meds!
After we were done, the nurse came in and took only some of the blood tests - which was 13 vials of blood!!! And I still need to go to a Quest lab near me and take the remainder because they forgot to tell me to fast before I came to the appointment. I also took a urine test there and have a much more complicated urine test to do at home, which I can only do after 7 days of not eating seafood and (sorry to divulge so much information but inquiring minds want to know) I'll be peeing for 6 hours on the 8th day with a combination of some meds in my system (FUN! lol).
After all these results come in, I'll schedule a follow up with him (and unfortunately have to take a morning off work already - sucks to do that when I'm just starting) where I will meet with him for another hour and review all the results and figure out the best plan of action for me: what supplements I should be taking, what I should be eating, what supplements I should stop taking. Then I will follow his advice for a month and then we'll meet again to see if we should adjust anything.
I should also say that I spent a small fortune on this appointment:
First visit: $400
Follow up visit: $275
Complicated at-home urine test: $160
Paying them to test my fatty acids: $257
Investing on myself and my health: PRICELESS
(and as my mom said, we happily pay more than that to go on a vacation or buying furniture, so I should just be happy that I have the money to invest on my health and well-being...GO MOM!!!)
PS: less than 2 weeks until I start my new job, I don't wanna say I'm scared, but I am a little! Oh man, it's been over a year. I know it will go great, it's just those first awkward moments and weeks of getting to know everyone and getting trained. But I'm sure it will all be forgotten when I get my first paycheck!
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| Me and my pal, Dr. Feldman |
We finished at 10:30am and my appointment with the new pain management doc wasn't until 1:30pm so I called their office and thankfully they could fit us in at 11:30. Well, we ended up being there for two and a half hours!!! When we first got there, I had to fill out my new patient forms. Then I got called in and had the doctor's undivided attention for about an hour. I must say that I really liked this guy...he mentioned new, innovative ideas that I had NEVER heard from any other doc in 6 years (unfortunately he spoke in scientific terms a lot so I don't remember too many specifics to list here). I faxed all my CMT medical papers in advance so he could become familiarized with it before I got there and he definitely knew what he was talking about, without being an expert on the subject. He is very familiar with neuropathies, genetic conditions, and treatment-less diseases.
Well, we already know CMT has no cure or treatment, so he doesn't focus on trying to treat CMT, he focuses instead on treating the patient, ME. But in the meantime, who knows if he can't help CMT, even a little bit? We went through my personal medical history and he thought of many possible scenarios. He ordered a LONG list of tests because he is going to examine all blood and urine test results to have a complete picture to know how to proceed. He was extremely thorough in his examination and because of our discussion I am really hopeful!!!! I strongly believe that this man is going to help me. I am not saying I believe he's going to fix all my problems. But I believe he is going to help me somehow, if not with the pain entirely, then help me have more energy, or sleep better, or not feel as exhausted and fatigued so easily. I'd like to point out that I am not naive about the possibilities, I just refuse to give up hope that one day I will live a better life.
I mentioned how horrible my thigh pain is and how I'm starting to wonder whether it's CMT related. One of the most interesting things he brought up was the fact that I'm taking so much Lyrica to help with my nerve pain that the medication could be creating these symptoms. He pulled out his little Rx book and the Lyrica description was extremely interesting and asked that you take follow up tests, which I have not done, and which thankfully were already on his long list of tests. So we are going to look closely at this Lyrica issue to see if they are related at all. Only thing is that my little sis who also has the thigh pain, does not take Lyrica. But also interesting is that this thigh pain has not been with me from the beginning, it's been about 2 years, which is the exact same amount of time I've been taking these meds!
After we were done, the nurse came in and took only some of the blood tests - which was 13 vials of blood!!! And I still need to go to a Quest lab near me and take the remainder because they forgot to tell me to fast before I came to the appointment. I also took a urine test there and have a much more complicated urine test to do at home, which I can only do after 7 days of not eating seafood and (sorry to divulge so much information but inquiring minds want to know) I'll be peeing for 6 hours on the 8th day with a combination of some meds in my system (FUN! lol).
After all these results come in, I'll schedule a follow up with him (and unfortunately have to take a morning off work already - sucks to do that when I'm just starting) where I will meet with him for another hour and review all the results and figure out the best plan of action for me: what supplements I should be taking, what I should be eating, what supplements I should stop taking. Then I will follow his advice for a month and then we'll meet again to see if we should adjust anything.
I should also say that I spent a small fortune on this appointment:
First visit: $400
Follow up visit: $275
Complicated at-home urine test: $160
Paying them to test my fatty acids: $257
Investing on myself and my health: PRICELESS
(and as my mom said, we happily pay more than that to go on a vacation or buying furniture, so I should just be happy that I have the money to invest on my health and well-being...GO MOM!!!)
PS: less than 2 weeks until I start my new job, I don't wanna say I'm scared, but I am a little! Oh man, it's been over a year. I know it will go great, it's just those first awkward moments and weeks of getting to know everyone and getting trained. But I'm sure it will all be forgotten when I get my first paycheck!
Thursday, May 20, 2010
Weeks 4 and 5: To be Honest, I've Been Better
The last 2 weeks have definitely been full of highs and lows for me. I'll start with the lows so I can end on a high note.
When I saw my surgeon over two weeks ago, he asked me to start weaning off the strong meds (narcotics) I've been taking since the surgery. So over the course of the last couple weeks, I have been reducing the medication by half and also spacing it out more. Finally, I felt good last Thursday and decided to stop taking it altogether. I was so proud of myself, my operated foot felt fine and so I went most of the day without taking anything.
However, my old pains had a different plan in mind. The medication was so strong that it made me forget how strong the pain in my legs really is when I am laying down for hours at a time. No medication or treatment I have ever tried has worked to calm them, except for this, which is clearly not the right solution. So that first night I battled with myself not to take anything and see how far it could go. Well, I ended up giving up at 2am and taking a full pill because I had already been brought down to tears and it was just ridiculous at that point. So the next day I tried spacing it out 12 hours - not good. The following day, 10 hours...didn't work.
On Sunday night, I talked with a friend from church and her husband, who is a doctor, who were kind enough to sit with me and try to figure out what kinds of treatment may be helpful for me. He was extremely resourceful and had lots of ideas that we could try and he was also going to speak to a pain specialist about my case. Thank you C & G!!!
On Monday, I went to see my regular podiatrist who has been so helpful and kind to me over the years. We talked about different options to try to ease the pain and I also talked to him about the ideas that we had discussed the night before with our friends. The first thing that was important for me to do was to increase my dosage of Lyrica to try to help with my nerve pain...since the surgery, I've had really bad nerve pain on my left foot. He also gave me two prescriptions for new pain meds that are very strong, try one for a week to see if it works, if not, then try the second.
I started with the new medication immediately. It did have its side effects so I spent most of Tuesday in the bathroom (I know this is TMI). However, I wish that was my biggest concern. As my stomach started to calm down towards the end of the day, the pain in both my legs and the nerve pain picked up and I couldn't sleep until 6am on Wednesday. It was one of the longest and most difficult nights of my life but I have my parents to thank for sitting with me, for crying with me, for taking turns with each other so the other could catch a few zzzz, after all they both had work the next day. I have to say, I hope to make them both very happy still...because the saddest thing is to watch your parents cry for you because they see you in pain. I can't promise it won't happen again, but I do hope to still give them many tears of joy.
Kal & Mica - didn't want you to worry so I didn't tell you today...but I'm better now so please don't worry.
Tonight the pain seems to be ok, not gone, but under control. I just can't sleep so I turned to writing on my blog again at an odd hour of the night....that's when the magic happens!!
As for the highs, it would seem that it's impossible to find them when the last two weeks have been about managing my pain, but I have been fortunate to go to church a few times, I can feel my upper body getting stronger and holding me up better, and I have gone home to spend a few days with my hunny.
At church, I got to see sooo many dear friends and hear some words of comfort and support from everyone. It was beautiful to see how many of our friends lined up to help bring my wheelchair (with me in it) up the stairs. I am really phobic of stairs so it wasn't the easiest thing for me to do, but I made it. I heard a lecture from a young woman my age whose life I could really relate to...and she chose to end her lecture by singing a song about how the pain will pass. I was already emotional enough from the outpouring of love and support, so it was no surprise that I let out my "bucket" of tears. I truly enjoy a good cry and I just felt so much lighter afterwards.
My mom drove me home to CT and I was able to spend a couple of days with John and also got to see so many of our friends there. It felt nice and odd to be home, since it had been almost a month that I'd been gone. I have to say, he's doing a great job keeping up the place on his own...I've taught him well :)
I knew this journey would be full of ups and downs and I was ready for them. Sure, it's not easy as I'm going through it, like a sleepless painful night. But today, that's a memory. At first, going up and down the stairs was so difficult and now I've actually done it twice in one day and even a few days in a row and no soreness. I know it will get easier as I go and hopefully I'll be out of the cast and able to move a little more so my legs won't be so sore. I am hopeful this new medication will work for me so that I will be able to keep taking it even after I'm healed to get some relief.
Today, I was so tired from not sleeping so a couple of friends came over to help. One of them (who is older than me) just recently went through her own medical scare and sudden surgery and in a moment of difficulty, she said she thought of me. That she had seen how strong I have been through my process that she had to try to be stronger through hers, that I was an example she wanted to follow. That was so sweet and nice to hear!
Good days give you happiness, bad days give you experience.
Both are essential in life.
I am keeping the faith....
When I saw my surgeon over two weeks ago, he asked me to start weaning off the strong meds (narcotics) I've been taking since the surgery. So over the course of the last couple weeks, I have been reducing the medication by half and also spacing it out more. Finally, I felt good last Thursday and decided to stop taking it altogether. I was so proud of myself, my operated foot felt fine and so I went most of the day without taking anything.
However, my old pains had a different plan in mind. The medication was so strong that it made me forget how strong the pain in my legs really is when I am laying down for hours at a time. No medication or treatment I have ever tried has worked to calm them, except for this, which is clearly not the right solution. So that first night I battled with myself not to take anything and see how far it could go. Well, I ended up giving up at 2am and taking a full pill because I had already been brought down to tears and it was just ridiculous at that point. So the next day I tried spacing it out 12 hours - not good. The following day, 10 hours...didn't work.
On Sunday night, I talked with a friend from church and her husband, who is a doctor, who were kind enough to sit with me and try to figure out what kinds of treatment may be helpful for me. He was extremely resourceful and had lots of ideas that we could try and he was also going to speak to a pain specialist about my case. Thank you C & G!!!
On Monday, I went to see my regular podiatrist who has been so helpful and kind to me over the years. We talked about different options to try to ease the pain and I also talked to him about the ideas that we had discussed the night before with our friends. The first thing that was important for me to do was to increase my dosage of Lyrica to try to help with my nerve pain...since the surgery, I've had really bad nerve pain on my left foot. He also gave me two prescriptions for new pain meds that are very strong, try one for a week to see if it works, if not, then try the second.
I started with the new medication immediately. It did have its side effects so I spent most of Tuesday in the bathroom (I know this is TMI). However, I wish that was my biggest concern. As my stomach started to calm down towards the end of the day, the pain in both my legs and the nerve pain picked up and I couldn't sleep until 6am on Wednesday. It was one of the longest and most difficult nights of my life but I have my parents to thank for sitting with me, for crying with me, for taking turns with each other so the other could catch a few zzzz, after all they both had work the next day. I have to say, I hope to make them both very happy still...because the saddest thing is to watch your parents cry for you because they see you in pain. I can't promise it won't happen again, but I do hope to still give them many tears of joy.
Kal & Mica - didn't want you to worry so I didn't tell you today...but I'm better now so please don't worry.
Tonight the pain seems to be ok, not gone, but under control. I just can't sleep so I turned to writing on my blog again at an odd hour of the night....that's when the magic happens!!
As for the highs, it would seem that it's impossible to find them when the last two weeks have been about managing my pain, but I have been fortunate to go to church a few times, I can feel my upper body getting stronger and holding me up better, and I have gone home to spend a few days with my hunny.
At church, I got to see sooo many dear friends and hear some words of comfort and support from everyone. It was beautiful to see how many of our friends lined up to help bring my wheelchair (with me in it) up the stairs. I am really phobic of stairs so it wasn't the easiest thing for me to do, but I made it. I heard a lecture from a young woman my age whose life I could really relate to...and she chose to end her lecture by singing a song about how the pain will pass. I was already emotional enough from the outpouring of love and support, so it was no surprise that I let out my "bucket" of tears. I truly enjoy a good cry and I just felt so much lighter afterwards.
My mom drove me home to CT and I was able to spend a couple of days with John and also got to see so many of our friends there. It felt nice and odd to be home, since it had been almost a month that I'd been gone. I have to say, he's doing a great job keeping up the place on his own...I've taught him well :)
I knew this journey would be full of ups and downs and I was ready for them. Sure, it's not easy as I'm going through it, like a sleepless painful night. But today, that's a memory. At first, going up and down the stairs was so difficult and now I've actually done it twice in one day and even a few days in a row and no soreness. I know it will get easier as I go and hopefully I'll be out of the cast and able to move a little more so my legs won't be so sore. I am hopeful this new medication will work for me so that I will be able to keep taking it even after I'm healed to get some relief.
Today, I was so tired from not sleeping so a couple of friends came over to help. One of them (who is older than me) just recently went through her own medical scare and sudden surgery and in a moment of difficulty, she said she thought of me. That she had seen how strong I have been through my process that she had to try to be stronger through hers, that I was an example she wanted to follow. That was so sweet and nice to hear!
Good days give you happiness, bad days give you experience.
Both are essential in life.
I am keeping the faith....
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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 :)