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've been slacking on writing my entries BIG time, but life has been pretty chaotic since going back to work. Now that I work full-time I'm just tired all the time and I don't really have the extra energy. I've been on the supplements for 3 weeks now but I can't really tell if they're making a difference yet.
I am meeting with my surgeon again next month because I think I may need to have more surgery...unfortunately one of the calluses came back on both of my feet and it has started to bother me some. Not to the level it used to hurt before, but enough to make me question when I should go under the knife again. I am definitely open to the possibility...now that I've embarked on this journey and devoted so much time to getting this fixed, I'm seeing it through!
But let's wait and see what Dr. Feldman has to say first...I would definitely want to wait until next year...I need to take a breather from hospitals. He always said he thought it may take two surgeries to correct everything so this isn't totally a shocker. I guess it just took a while for me to walk enough for the calluses to show up again. And if I do go back in, I'm already thinking of fixing my toes this time so I'll be all done for good!
In the spirit of getting me some much needed rest and relaxation, we are leaving on our 12 day trip to the Southern Caribbean tomorrow!!!!!!! I really should be sleeping right now since I'm supposed to wake up in 4 hours...LOL...I'm really excited to introduce my new footsies to the sand and to wear the cute sandals I bought!!!!
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!!
----------------------------------------------------------------- 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!
Thanks to my "ugly feet," I've never been able to walk into a shoe store and buy as many shoes as I wanted. And that's not even talking about the cute or trendy section. I always had to go for the comfortable-and-definitely-not-the-most-attractive-shoes around. And even those, many times I had to return because my feet would hurt so much.
Since recovering from my second surgery, I've been SO excited to finally buy cute shoes and go on a shoe shopping spree. I might've gone a little overboard, but who cares? Being able to walk into DSW (of course I picked the largest store) and have SEVERAL cute shoes fit me was definitely a first, an exhilarating experience (possibly a shoe high?). I actually had to turn down some just because I wasn't ready to spend that much. And Easy Spirit online (unfortunately there are no stores in CT) has become my latest BFF.
I am now the proud parent of several cute boots to wear in the winter and to work, and a few really really cute sandals for our Caribbean cruise in two weeks. I don't think I'll ever be able to do heels, even with new feet, but I'm very happy with my flat shoes.
Below is just a small sampling of them!!! My right foot was still a little swollen when I took these pics two weeks ago, that's why it doesn't go in all the way...and please don't mind my un-manicured feet, another habit that new feet will be breaking.
PS: Even though I have new feet, I am thinking that I may need more surgery....I'll write more about that next time.
My supplements finally arrived in the mail today!!! As much as I am not looking forward to taking all these pills every day, I'm really excited to see the results!
I had my follow up appointment with Dr. Kessler this week and I am really excited about the treatment options we discussed. He mentioned again that he obviously won't be treating CMT, but will be doing as much as possible to help my body have more energy and to feel better.
Overall, I'm pretty healthy (who would've thunk it!), but my body is stressed. No diabetes, no lupus, no thyroid problems, no lyme disease, blood pressure is fine, etc, etc. Then on to where the body needs help...one of my thyroid hormones (T3) is a little higher than usual which makes my body sluggish. My hormones are unbalanced, my progesterone is really low and my estrogen/testosterone levels are normal, but on the low side. My stress hormones are pretty much sucking the life out of them and it makes me feel like I have nothing left to give.
One interesting fact is I should not eat mercury fish under any circumstances, which is mostly ok by me, except for the amazing tuna sandwiches that John makes that I'll have to give up :( The body usually takes 2-3 weeks to get the mercury out of its system, mine is doing it in 6-9 MONTHS!!!! My digestive system is also not doing so good, I may not have enough stomach acid to digest the proper nutrients that I need.
I was really pleased with how he analyzed my results and all the natural medication I can take to regulate the hormones in my body where it most needs it. He prescribed me a TON of natural meds to start taking immediately and I'll be taking them religiously for a month, when I'll go in for another follow up. If all the pills get to be too much, he highlighted some that I can stop taking for now. And I prepped myself to pay at least $1,000 for this visit, given how many meds I was ordering, but for curious minds, it all came out to $768, including the doctor's visit....a nice investment on my health :)
It's been a while since I wrote on here, but I'm a working woman again so I've been a lot more tired and had a LOT less free time to write. But today is a snow day here again and I am hanging out in the comfort on my home. Thankfully we have been hit with 3 storms over the last couple of weeks and that has gotten me two free days off work and one early dismissal!!! Now, normally I would not be a fan of all this snow, but I can definitely use a day off at home during the week.
And it's also been just absolutely beautiful in town too
I actually have some great foot updates lately too...My right foot has finally turned the corner and has gotten so much better. The first couple of weeks at work were tough with the swelling, having to keep it elevated so much, not being able to move very well and also not being able to rest like I did with my left foot. About 2 weeks ago, I started to ditch the boot and crutches at work (I haven't used them at home in a while but I was being safe in the office) and also started to wear sneakers. This week I started to wear real shoes, pretty new shoes that I've been buying and the swelling is down considerably. It's such a huge relief. I am feeling so much better and stronger. I have even started to cook again and taken out all the "old lady" paraphernalia out of my bathroom.
Next week I'm going back to see Dr. Kessler for our follow up visit. While everything has gotten so much better, the pain in my thighs and my lack of energy have not changed but I am very hopeful that he's gonna have a trick up his sleeve. I'll write more after my visit with him. For now, I'm gonna go make a cup of hot chocolate and sit on the couch under the blankets.
Once again I can't believe it's already been 3 months since my 2nd surgery (and 8 months since my first). I have to say the last couple weeks have been a little challenging adjusting to work again but I think my foot is finally getting the memo. After last week's inching debacle, I started to take more care of my foot and he started to behave more. I am keeping it elevated 80% of my day at work, icing it at least three times at work, and also taking 2 ginger tablets a day (my surgeon's nurse said she has heard this is a homeopathic way of treating swelling). My foot's been a little swollen but sooo much better than it was. I'm even feeling brave enough to possibly wear sneakers to the office one day next week so see how it behaves.
I also can't believe this year is over. 2010's been fun (NOT!) but I am ready for 2011. This has been one of the most difficult years of my life but one that has taught me many lessons of strength, (a little) patience, learning to lean and depend on others, and most importantly, gratitude. But I am so excited for 2011...a new year ahead of me, with new feet, a new job, a fun trip in 2 months, I'll be 30 in March, hopefully a first time home buyer at some point, the possibilities are endless.
Just wanna wish everyone a very Merry Christmas and a Happy New Year.
My foot kinda ballooned in size last night...I didn't really do much standing or walking, even used the old lady mobile chair at Wal-Mart. It also poured all day long and John seems to think that had an effect on it.
Today at work the balloon seemed to get a little bit bigger...check me out:
My foot has NEVER been this swollen
When I took my compression stocking off at lunch time to ice my foot, this kinda panicked me a bit. Not only was I having an extreme information overload morning and then to have to deal with this. So I called my surgeon's office and spoke to his nurse who said I should just continue to do what I'm doing: taking it easy, elevate and ice it. But she said to lose the compressing stocking. No problem! I don't like that thing anyway. If it doesn't get better, she wants me to come into the city on Thursday morning to see him. I hope I don't have to do that.
So when life gives you lemons, you improvise:
How I improvised to keep my foot elevated under my desk at all times
I also spoke to my boss and she was SOOO nice about it. She was actually adamant that I call my surgeon and said if I need to take any time off to go see my doctors or even if I need to take a week off just to sit at home that it's totally fine. I obviously don't wanna do that but let's see how it goes.
I just got home and the swelling is actually MUCH better. I hope it keeps going that way.
I have been trying to get some motivation to write an entry all week. I have just been so exhausted that I postponed it til today, so please forgive me if this isn't one of my best.
Going back to work was great and overwhelming and exciting and exhausting. It's been a week full of mixed emotions. I'm really excited to be back to work, to have my office, to start to do what I love again (and am quite good at!), to just be back to a normal life, and especially to have work benefits and an upcoming paycheck. But boy, was it hard on my body!!
Monday through Wednesday I was pretty much a vegetable when I got back home. And quite honestly, I wasn't really taking care of me during the day. I was just too excited to meet people and my boss was too excited to make me walk everywhere. So on Thursday, I nicely told her I had to take it easy because my foot's been pretty swollen. As a result, Thursday and Friday were pretty great. I still need a lot of training and it'll take a while for me to be fully aware of everything I need to do.
Just want to say a HUGE thank you to John who made dinner and served me every night this week and who didn't ask me to do one thing around the house so I could just rest at night. You're the bomb diggity!
Today's been a pretty lazy day, just resting up to be ready for tomorrow! My foot's been behaving pretty good, it just gets swollen because it definitely hasn't gotten this much action in a looooong time!
I can't believe it's finally the eve of my return to the workforce and I am all ready to go. Lunch is packed, outfit is picked, sleeping pill was taken (LOL! I have to make sure I sleep tonight!).
I just realized this past Friday was actually one year since the beginning of this journey. Thanks for all the positive thoughts and support during this long year. I am excited to be finishing off 2010 a whole lot better than I did 2009. Bring on 2011!!!
I got some amazing news this week. Someone I know from church, who truthfully I only met once but have worked together on a couple projects, bought me a power chair!!!! I am sooo excited to get it and to try it out. I've cut back on some activities over the past couple of years because they involved a lot of walking but I am so excited to go to a zoo, theme park, or the Big E (huge annual fair in MA) next year.
I am so thankful and grateful for this amazing gesture that was completely unexpected.
My new chair!!!!
PS: Thankfully my foot is healing and has been feeling so much better these last few days. I even drove myself to an appointment yesterday. Today, I pulled out my flip flops and finally ditched the walking boot for a couple of hours and I feel great. I am totally ready for work on Monday, but I am still being cautious and will wear my boot and bring the crutches. I've gone from nervous to excited! I'm ready to go!
Oh the joys of a CMT'er!!! Shoe shopping is not as fun like it is for the rest of the world. Being a shopaholic is definitely not even a question. And shopping with one foot completely healed while the other is still a bit swollen is also not an easy feat. But the truth of the matter is that I am now DAYS away from starting my new job (holy crikey!!) and I need at least a couple of shoes I can wear to the office.
I took advantage of Cyber Monday yesterday and bought 6 pairs of shoes from Target. Got a great deal + free shipping...YAY ME!!! Unfortunately they didn't have any you-can-wear-me-to-work-type shoes so I mainly bought cute boots and comfy slippers. And today we took a trip to DSW where I bought 3 possible please-wear-me-to-work shoes. But as I always did pre-surgeries, I have never bought shoes that didn't go through a rigorous pre-screening regimen at home before they were actually worn outside, so I could always return those deemed unfit - no pun intended.
Now why am I not sounding so confident now that I have 2 brand new feet? Well, my surgeon and I talked about not putting any pins to straighten out my hammer toes because he thought that when he brought up the arch, they would straighten out a lot more on their own and also, since we were already putting so much metal in my foot, that was not exactly an area that needed the metal. That would be more of a cosmetic change.
Well, NOW I wish I had gone for the cosmetic change because it would be easier to shoe shop and my hammer toes, which did not straighten much, wouldn't be a problem in this equation. So wish me luck as I try to hold on to at least half of these shoes over the next couple of weeks.
So today I completed the blood work that my pain management doc requested. In total, 22 vials of blood. My little veins need some time to recover. LOL. And the final thing will be my 6-hour peeing session on Monday. Can't wait to hear the results from all these tests.
In the meantime, here are some new pics of my footsie, all healed but still swollen. I'm still taking it very easy because it's still hurting if I walk too much.
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.
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!
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 :)
