There are many different symptoms that identify CMT. Not only is our condition the most commonly inherited neuropathy, but it also manifests itself differently from patient to patient. One of these symptoms that I would like to discuss, which is not exactly accepted by all doctors, is pain. According to Wikipedia, pain is an unpleasant feeling often caused by intense or damaging stimuli, such as stubbing a toe, burning a finger, or putting alcohol on a cut. The International Association for the Study of Pain's widely used definition states: "Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage." Pain is what led me to my Charcot-Marie-Tooth diagnosis and my pain has evolved over the years. Back then, I had pain on the balls of my feet because of my calluses and felt pain with each step. Then I began having a lot of "charley horses," pain in my calves, which I still have to this day. My most challenging form of pain wouldn't make its appearance until years later - my thighs. It's a strange form of pain, hard to describe. It feels like pressure, as if there is something permanently suffocating my thighs. This last type has become my biggest concern as it just refuses to go away, ever! It's my companion 24 hours a day...always present in my life. As I have described in earlier posts, I have started to take medication and do therapy that help give me some relief. However, many doctors still do not accept the idea that CMT causes pain. They try to tell you that you must have another unknown condition. As if one invisible disease wasn't enough! It can be extremely frustrating to try to persuade a medical professional of a symptom you have that is being caused by an actual diagnosis you have. The more and more I speak to different CMT'ers throughtout the world, I am convinced that pain indeed is a symptom of CMT. It would be great if we and the professionals who can help us were on the same page. I wanted to write this post because I recently found out about an organization that very much cares about pain and is doing everything it can to help me and people like me. One of my dearest friends from church and I have always had a very special bond. She has a neurological condition and also has feet and pain problems. I always say that she's my body double! She recently attended a conference organized by the International Association for the Study of Pain (IASP), mentioned in Wikipedia quote above. She returned from this event extremely excited because this is a very serious organization, highly respected in the science world that focuses on research about pain. She told me that there were over 7,700 individualsfrom all over the world at this conference; discussing updates, presenting new ideas, and exchanging information. All of these professionals had one goal in mind: helping to alleviate pain, physical or emotional.
Over 1,000 professionals during one of the sessions.
I just wanted to share this information because it gave me a lot of hope and maybe it can do the same for you. It's great to know that there are thousands of people out there looking for a way to help ease our pain and suffering, and not only professionals in the CMT field. I am not holding my breath that there will be a cure in my lifetime, but I am very hopeful that I will be able to live happier, less pain-filled days sometime in my future.
As someone who has tried such a multitude of medications, you're always a bit skeptical about starting anything new...and the new prescriptions I got didn't exactly start to work right away, as the doc said it would take a couple of weeks, but it was driving me insane to deal with so much pain...and with that much pain comes tears, emotions, etc etc...
However, they FINALLY kicked in about 10 days ago and I have been feeling GREAT!!! My pain is down to a much more manageable level and I'm even waking up pretty pain-free, compared to the mornings when I'm writhing in bed with pain and it takes me a while to get up. I can't even begin to explain how grateful and relieved I am!!!
Unfortunately, my insurance did not approve the medication for the chronic fatigue (something about it not being FDA approved), so I will have to wait until my follow up appointment next week to see if we could try something else to give me a boost at the beginning of the day...I am just praying that these meds LAST! I could use feeling a little normal for a while :)
Ohhh the life of a CMT'er!!! To try over and over again to find a set of medications that may help improve our quality of life, battle constant chronic pain and possibly lift us out of our chronic fatigue. I have searched high and low for different doctors, different types of doctors, new meds and I'm still searching for something that will help me - as I am sure are many people with CMT and other neuropathies.
One of my fellow pool therapy buddies recommended I go see her pain management doctor who helps her a lot and he is located in the next town over so I figured I should give it a shot. I made the appointment for yesterday and the hubs came along with me (it's always good for me to go with someone because I can NEVER remember everything I plan to say or ask).
We arrived for the 12pm appointment and weren't called in to the office until 1:30pm!!!! This is one of my BIGGEST pet peeves. What is the point of scheduling a time if you're going to keep me waiting so long? And, in case you missed it, I am going to see the doc for pain, so to leave me waiting that long is not making my body feel any better. We almost asked for the co-pay back and walked out when they finally called us in. My first impression so far was not good.
Thankfully, the doctor was very nice and helpful. I am only his THIRD CMT patient ever (Shocker!) - I am just glad at least that I wasn't the first! He listened to my entire history and we begun discussing what could possibly work and what approach I should take. At the end of our chat, we have added 4 new meds to my daily routine to start off with - well, 3 new meds and 1 vitamin. Two of the meds are for pain and one is for chronic fatigue, which is honestly the one I'm most excited to try.
I am cautiously optimistic about the possibilities and hope at least one of these will help me find some relief. The plan is to try them out for a month and go back to him for a follow up. I am crossing my fingers that I have good news then...wish me luck!
I feel like it's been ages since
I worked, when in reality, it has only been three weeks. I really hit
the ground running with projects around the house, planning our summer
wedding reception, cooking a lot more, doing physical and hydro therapy
twice a week, and returning to my activities at church.
It
was definitely an easy adjustment into this new life...I am still tired
and in pain, but thankfully my pain levels have decreased and I've been
able to take one less pain pill a day...The therapy sessions have been
more challenging and I feel myself getting stronger. The one major
difference is that I can manage to do these things, even though I still
get tired easily, but now I can rest for an hour or so between them.
Before, I'd work during the day, come home tired, and have to pack it
all in the evening hours, leading to my zombie/drained lifestyle of the
last few months.
I
am really grateful that I can stay home now and that I can focus on my
health. Thankfully, the sadness of leaving work has passed and I have
started to embrace the new and positive improvements in my day to day
life. They say that when a door closes, another opens...so I'm really
trying to enjoy the new door that has opened in my life...I feel like
the last chapter may have been a bit bleak, but this new one has
certainly turned into:
I have continued to be M.I.A. from my blog because the last couple of months have been a struggle: physically and emotionally. I didn't really want to write a sob story or just complain so I thought it was best to stay away for a while.
Since I really crashed at the end of September, I have actually been struggling to get back to normal and can't seem to get there. I have been on this new work schedule for 2 months and I can't seem to feel less exhausted. We paused a lot of the home renovation projects so we could get some rest. I can't remember the last time I cooked a meal...unfortunately none of these things have helped much. It has been a slow recovery process and I've actually started to use my wheelchair on a regular basis when we go to any big stores like Home Depot or Bed Bath & Beyond. The pain reached an all-time high, which led to many crying/sobbing sessions, much time spent thinking about life and pondering "What is my future going to be like?" And as a person with a progressive degenerative neuropathy, it's NEVER good to go down that path.
We actually took a 2 week vacation in Brazil where my entire family was reunited for the first time in over 15 years. John and I were very excited to get away and get some much needed rest. The trip, like CMT, had many ups and downs. The absolute BEST thing about our vacation was that John proposed to me in front of my entire family. It was such an exciting moment and so special that we got to share it with my sisters and all the relatives there. I have been blessed with a wonderful family and a very supportive and loving man who will soon be my husband!!!!
The downside was that even though my CMT decided to take a break, I had a couple of different ailments that kept me in bed for most of the trip, sleeping all day and awake all night, and unable to spend quality time with family and siblings I hadn't seen in over 2 years!!!
I am so thankful for having a religion, for having faith, for believing in a higher power, but I definitely reached a point where I was just exhausted emotionally. Tired of bearing the brunt of the pain, wanting just a little break, desperate for some normalcy...and for the first time in my life I became depressed. I know many CMT patients struggle with depression because it's not easy dealing with non-stop chronic pain, but I had never experienced this myself. While I recognized what was going on with me, I couldn't get myself out of this "funk."
I think one of the main reasons I've been down is that now that we're getting married, we own our home, the next logical step is to have babies. I am so lost. I don't know what to do. I know that I want a family but I am scared. I'm scared about who's going to care for the baby when I am at my worst, I am scared about pregnancy, what if my symptoms get worse? And what if I pass on CMT to our baby? I know life will work itself out eventually but not knowing which way to go has been a bit upsetting for me. John is okay with whatever decision I make, he's happy as a two-some but he's so great with children that I want our child, I want to have a family, I want the child laughter in our home...but I watch all my "healthy" friends struggling with the craziness of being a parent, I wonder how I'll be able to do it with this tired body of mine... I know many of my CMT buddies have managed it and that's always positive reinforcement, but I still wonder...
To make a long story short, I think I'm slowly getting better but I am seeking help. John and I talked about many possible treatments and we decided that it would be best for me to go back to physical therapy, which will be starting tomorrow. I have also been stretching at home every night and I feel like it has made a difference for the better. I have NEVER been able to touch my toes and look at me now!!!!
I will also be starting yoga this weekend...a great friend from church has volunteered to come to my house and help design a program that will be helpful for me that won't be too tiring. She's going to teach me breathing techniques and exercises we can do sitting or laying down. I'm also in search of a new primary care physician so I can have a physical done and a new neurologist at the Yale Medical Center. Wish me luck!!!
Even though I have CMT to deal with, it seems that God sent a bunch of angels to watch over me...from friends who volunteer to help here and there, to a wonderful mom who comes over and fills our freezer with yummy food, to a wonderful fiance who knows what to say at the right time and helps me so much around the house, to fantastic dad who is there for us to help with whatever we need, to amazing sisters who are there to hear me out, to dish out advice and sometimes just be a shoulder to cry on (even if long distance).
I know I will find the strength to get back to normal...to be my happy self again with hopefully a little less pain. Life is full of happy moments and sad moments, to those with a medical condition or not. I am tired of being sad and of thinking too much.
2011 has been an amazing year for us, but also a very difficult one for many reasons. I am really hoping that 2012 has a lot of exciting things in store for us.
I had a follow up call with my pain management doc on Wednesday and told him the amazing news of how I've been feeling so great, that I finally figured out how to take the pain meds in just the right dosage for me, how I'm so happy to be waking up and feeling so well. And I also had to tell him that I stopped taking all supplements because I started having some freak rashes all over my body and I wasn't sure what it was...it turns out they were bug bites, not supplements.
While he was obviously happy for me, he was a bit concerned about the blood test results that he received for some tests I did a couple of weeks ago. The levels for my energy are extremely low...scary low, as he put it. And even though I've been feeling so great, it really is just the Tramadol getting me through the day. Some of my other levels are also really really low so he recommended that I continue to take some of the supplements, which was fine by me. I just didn't wanna go back to taking 33 pills a day.
Initially, he prescribed me the short-acting type of Tramadol, the type you have to take every 4 to 6 hours. He explained that if that worked, we could try the long-acting form so I would only have to take 1 pill a day instead of 4. Sounds great in theory! When we spoke on Wednesday, he asked me to try the long-acting form and I noticed right away on Thursday that I did not feel the same, it did not give me the same relief. But I do try to give all these meds I try the benefit of a doubt, so I tried taking it again on Thursday night...and was unable to go to work on Friday :(
I just woke up so weak and in SO MUCH pain, that it took all the energy in me just to shower. I hate calling out sick, especially when I need my sick days next month for my surgery! I didn't have any energy all day long to do anything but sit/sleep on the couch. I felt better as the day went along but got worse again at night. I called his office and pretty much told them I would take 2 long-acting pills tonight and if I wake up a mess again tomorrow I'm going back to what I was doing before because it was clearly working.
It's so crazy that I've been feeling relief for such a short period of time, and yet, it's almost like I forgot all about how things used to be "before." I honestly can't even tell you if today's "episode" was better or worse than my every day life before I figured out my Tramadol dosage. And I used to get up in the morning every day feeling a mess and manage getting out the door and today it literally got the best of me.
I am just so THANKFUL for medicine and all its advances because here I am today reeling but hopefully this will be figured out soon and I'll have the relief that I need. I have to admit that it was a scary day to feel so debilitated, to be in so much pain and to be unable to do anything for myself. Hopefully this won't last!!!
As you've been able to tell from most entries I've written lately, I've been really struggling: with pain, with fatigue, with exhaustion. I've been on a journey in search of medical and spiritual help to find some relief. I am definitely a lot better now than when I started, but I have to say that a switch seems to have clicked over the last week that could make all the difference in the world.
About a month ago, I started on a new pain medication, in addition to increasing my daily dosage of Lyrica (for my nerve pain). My doctor said I could take 1-2 pills every 4 to 6 hours. Since I'm already popping enough pills as it is, I've been doing one pill with breakfast, lunch, and dinner. I've noticed some relief but nothing major. The last two weeks have been extremely busy for me personally and at work and I seriously crashed last Thursday night with an incredibly busy day and I was just BEYOND exhausted. Since I had to go to work on Friday, I decided to take two pills with dinner so maybe I could have a better night of sleep.
Well, I could've probably JUMPED off the bed in the morning if I wanted to because I just felt SO good. And that's not what I expected at all - I just thought I'd be completely sore and a zombie at work all day. Then I had another busy weekend and I decided to try my luck and take two pills with dinner on Sunday night and Monday night. I honestly can't even think of the right words to express how I feel....
I can't remember the last time I felt this light, this clear headed, this rested, this AWAKE. I feel as though I've been walking around with a veil of exhaustion over me that has suddenly lifted. I was able to wake up yesterday and today, even after not a full 8 hours of sleep, and not feel like I had an elephant sitting on top of my legs. I've been able to sit through meetings without yawning repeatedly. I've had two super busy days at work because one of our biggest events of the year is on Thursday and I'm not stressed. I'm just going through the motions and getting the work done.
Like I said, I can't remember the last time I have felt ANY of these things. I've been on survivor mode since going back to work and just struggling to make it through the week, always tired, always in pain. The pain has not completely gone away but I feel like the fog I've been in has been lifted. I am praying that this is a permanent change, but even if it's not, I am just BEYOND HAPPY that I've had these days to feel like my old self, I guess. It's been so long, I couldn't remember what it was like.
And honestly, the more I think about it, I can't really remember what my old self was like - before all of this got so much more intense and painful. If this is my new norm, I am excited to re-discover how I used to be. Maybe a little more calm, a little less on edge, much much happier. I so soooo needed this. I am SO thankful to God!!
I hope people who are healthy and read this entry don't take for granted what they have. I know we have SO much to be grateful for and sometimes it's not until you lose it that you realize how good you have it. I am LOVING this "new" old me. I can't wait to call my doctor tomorrow and tell him the amazing news!
Thank you for being there for me and for helping me along the way...
Thank you to another dear friend who has helped me so much!
I'm so glad that we were able to get away...our vacation was AMAZING! We got to see so many beautiful islands, I got to see my friend "the sun" again and it was nice to enjoy some time away from all the madness. Cruising is just the best and we are hooked for life! But even as we go away, I worried about the walking and standing to make sure I wouldn't be in too much pain. I also packed some meds so I could hopefully get some relief too.
Introducing them to the good life
A really strange thing happened with my left foot as we were away...I must've banged my big left toe one day going into the pool, and when I got out, there was blood gushing everywhere from the tip of my toe, which completely freaked me out. It actually looked like the pin in my toe was coming out (I know...totally gross!!!). After my shock passed, thankfully nothing was coming out and it stopped bleeding just as quickly as it started. Unfortunately this incident happened one more time while we were walking on a dock and I decided I'd just wear my water shoes the rest of the trip and not my flip flops.
Introducing them to the pool
This trip also made me think a lot about my life and the future. Sometimes it's not good to delve into all this thinking but it's hard to get yourself out once you've started it. And John and I started to talk about children...should we have them? Not out of fear to pass on CMT, more out of fear that I'll be too exhausted to take care of them. How will I manage? Also, we are SOOO not ready to be parents to any little gremlins yet, but what if we keep waiting and then I'll just get more and more tired?
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?
I'm not sure what I did wrong...but I'm in too much pain to walk now. I've been walking great and about a week ahead in progress compared to last time. So John and I have been house hunting since I came back home and we saw 3 houses on Thursday. I didn't think that was a big deal since we had done that before. I came home and my foot was already bothering me so I decided to stay off it the rest of the day.
Then yesterday I stayed off it all day until it was time to go see Harry Potter. Since my friend got herself a baby sitter for the night and drove all the way up from Jersey, I didn't think it would be fair to bail. Well, I should've probably taken my wheelchair. I came back home almost wanting to crawl to my apartment door...that's how much my foot hurt.
So it's really swollen and still very painful today so I'm staying off it the entire weekend. It's kind of a bummer. I've been doing so great and my foot has honestly not hurt like this since the first couple of days post-op. Thankfully I see my surgeon in 3 days and we'll see if anything comes up in the x-rays. Hopefully it's nothing serious!
I haven't really felt like writing these past couple of weeks because I have been pretty uncomfortable. I've been weaning off the pain meds carefully and a little more slowly than last time so I wouldn't suffer as much. And I finally called it quits on Saturday. Oh boy. What for? My entire body just aches, but mostly everything from my thighs down.
My legs have been hurting so much that I haven't been able to sleep (went to bed at 5am yesterday and only because of sheer exhaustion). Needless to say, it's been a rough few days. Yesterday, it definitely got the best of me and I got a good cry out of it. Then John was nice enough to take me to sushi, where we had an amazing dinner, and then we watched part of Harry Potter: Goblet of Fire (in preparation for Deathly Hallows on Friday, I can't wait!!!!). At the end of the night, I was really happy and not to mention, exhausted from lack of sleep, which trumped the thigh pain, so I was able to sleep at a decent time. But since I got a good night's sleep last night, it's probably too much to ask for two in a row, so I'm in pain and can't sleep because I'm so uncomfortable. Yes, I am tired but my legs just hurt too much. So I caved and just took half a pill, which will probably start working in 30-45 minutes and I'll be able to sleep then.
I cannot wait until Tuesday! First, I have my final surgeon's appointment at 10am. Then, I am going to a new pain management doc, and I am "trying" to be cautiously excited, but I think I'm not doing a good job. I am very hopeful that he will help, that he will shed some light on my situation. I'm starting to think that all this thigh pain isn't CMT afterall, none of my CMT buddies seem to have it, except for my sister. Could it be another complicatedly-named-genetic disorder we've never heard of?
So please wish me luck and say a little prayer as I gear up to meet this guy...may he have the right treatment for me and help me get over this pain...or even just help me get more energy to get through the day. I'll let you know how my appointment goes...and if he puts me on any crazy diet. (Please just don't ask me to eat bananas, celery, or olives.)
Just so this entry is not a total bummer, I'd like to point out totally unrelated positive news. My beloved orchid, a gift from a dear friend, is coming back to life. I thought I had lost her for good after she gave me 8 beautiful flowers this summer, but I came back home to see John took good care of her for me while I was gone and she'll be out to greet me again soon.
My beautiful orchid almost ready to come out. I can spot 4 future flowers :)
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!
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.
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'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 :)
