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 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 :)
It's been six and a half weeks since my 2nd surgery...time flies, I know. It only doesn't fly as you're actually living it and sitting on your bum so much. Now that I look back, where did the time go? It's been almost 7 months since my 1st surgery and I can still vividly remember everything about it. My year-long journey in search of a better quality of life with less pain is coming to an end.
I still remember my search for surgeons last November and December...almost 1 year ago to the date, a crazy surgeon told me that I was "beyond repair." Where were his manners? I bawled my eyes that night. And now I have two new feet. One that is already working beautifully and another that is already on its way. I started to walk again this week and tonight I even walked myself into a Chipotle...Delish! (Kalila, that was for you...lol)
I am feeling many things as I reflect about my 2010...the anxiety of not knowing what was going to happen, the happiness with the results, the boredom of sitting at home, feeling like I've accomplished what I set out to do, happy that I am going home tomorrow, and really sad that I am leaving my parents' house for good this time.
I know I am 29, but if it wasn't for this wonderful boy I fell in love with 6 years ago, I would never leave home. Think Monica and Rachel in Friends when Monica had to live with a boy!! Sure, my parents do drive me mad sometimes, but I love it here. So so much. And sure, John and I moved in together almost 2 years ago (LOL) but I've always been here so much...in 2009, I was commuting like a madwoman from CT to NJ for work and I'd sleep here at least twice a week and still go to church every week and in 2010 we moved further away but I've spent 4 months here, receiving the best care in the world and lots of TLC. So I am really excited to go to my "real" home tomorrow with John and continue living our lives, go house hunting and go back to work next month....all these things I've really been wanting to do and that I am blessed that I can do.
But now that my bags are packed and I know this time is for good I am sitting here writing this entry and crying. Goodbyes are never easy so it's just see you later (I can be so dramatic!). I'm sure my mom will be at my house this weekend to check up on me and bring me food.
Muito obrigado por tudo!
Eu te amo mainha e painho.
The 3 of us ready for round 2
The boy
(unfortunately I look much better in the pic above in the hospital...go figure!)
I am soo relieved to have my cast off and to be able to put my foot down again! Now on to the next phase of my recovery...I'll be out of my walking boot by Thanksgiving! YAY!
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!
It's been one month since my surgery and I am officially over being in bed! I miss walking and putting my foot down sooo much and I just can't wait to be able to do it again! I have 9 more days til my next doctor visit when my cast will be off for good...and hopefully FOREVER!
I think this time I'm a little more impatient to get this process over with. Last time I knew I still had one more surgery to go and had endless time off. Now I have a wonderful job waiting for me and I can't wait to start! All my suits and work clothes have been sitting in the closet for a year waiting for this, but I'll definitely have to go out and buy new shoes. I can't wait to stop paying for health insurance on my own. I am excited to know that Christmas and New Year's will be paid holidays again this year. I can't wait to see money coming IN to my account instead of OUT (well, it'll still come out but you know what I mean).
It's funny that I haven't dreaded Mondays in a year, or looked forward to a Friday, or complained about the crappy weather to commute in, or had work drama. It's ironic that in life, at least my life, there's no half way. Before I was always on the go, always tired, always ready for the weekend or a vacation. And now I am too rested sometimes, sleep whatever time I want, wake up as late as I want, yet I'm dying to go back.
I'm sure I'll still complain about Mondays and still look forward to the weekends but I'll have a new appreciation for being ABLE to work, for being ABLE to drive when and where I want, for being INDEPENDENT. Plus this time around I'll be doing it with new feet, that don't hurt with every step...this is beyond exciting for me!!! I am so grateful that I've had the opportunity to take this time off but I am ready to get back to my life. CMT will always be there along the way, but I'm definitely not ready to completely stop so CMT better slow her butt down so I can still have a lot more productive years in my life.
As I have mentioned in earlier entries, I started this blog out of convenience (aka laziness), so I wouldn't have to repeat the same stories to my sisters who live in Brazil, my parents and my boyfriend. I also intended for it to be my online diary, a means for me to remember this journey I embarked on to research and eventually undergo reconstructive foot surgery (TWICE!!).
I never imagined this blog would connect me with so many fellow CMT'ers, who I could share my stories with, who would cheer me on along the way, and give me so many helpful tips. I have met other bloggers who I love to follow and read their stories, become more involved with the CMT community, and made some new friends. I had no idea this amazing CMT blogsphere existed!!!
Never did I imagine in a million years that anyone would want to read my thoughts and ramblings - including some of the 5 people I mentioned above...not to mention any names, MOM, DAD, or JOHN!!! LOL.
Recently, Google added a "Stats" button to my blog toolbar and look where my blog is being read: US, Brazil, Canada, Australia, South Africa, UK, Latvia, India, Ireland, South Korea, New Zealand, Netherlands, Lebanon, France, and Russia. Oh-em-Geeeeee!!!!
Soooo cool!!
I am sooo excited about the response I've received and I'm truly humbled by it. I just wanted to say HI if you are reading this all the way across the world or just across the Hudson River. If we haven't "met" yet, feel free to reach out to me...I would LOVE to hear your story. You can email me at myjourneywithcmt@yahoo.com.
I went to my 1st post-op appointment this past Thursday and got to meet my new right foot. It was such a relief to see it and know that everything went well. Dr. Feldman was extremely pleased with the results and how my foot is recovering. I got a new cast that will come off on November 2nd...now I just have to sit tight and anxiously wait til then.
I am happy to report that surgery #2 was a success!!!! This time I felt so much more prepared and at least I knew what to expect, except for the delay. Unfortunately Dr. Feldman's 1st surgery ran late and mine didn't start until 3 hours later...needless to say, I was STARVING!!!! I saw a lot of old faces from the first one too and that made me feel even more comfortable.
The days that followed were very similar, A LOT of pain on the first day, a lot of itching (as a result of the meds), drowsiness, dizziness and all that good stuff. But there were also a lot of the great things from the first one, visitors that brought me yummy food and TLC...Thanks Jess for my Mexican food, Dorothy for Crumbs' cupcakes, Vero for my Get Well Teddy Bear...and also all the beautiful flowers from other wonderful friends...
At home, the first few days were really tough too, just getting used to my strong meds again, the dizziness, and how much they affect your belly. Oh man, getting up the stairs coming home was hard again, how easily the body forgets LOL. After 3 pretty crappy days, today has been a much better day!!! Feel like myself again, just with a cast at the end of my right leg. And my left foot is behaving so nicely, all new and strong, supporting the weight of my body with no complaints.
I feel like a weight has been lifted, like I pulled the band-aid. The surgery is done and now it's just my way to recovery. I already go see Dr. Feldman to remove the first cast and the stitches next Thursday and before I know it, I'll be walking again.
And in the midst of all this craziness, I got the best news...I got the job!!! I cannot even start to describe how excited I am! Things were really meant to be!!!! My original surgery date was September 20 and then Dr. Feldman's office changed it to the 22nd. And instead, I had a first interview on the 20th and a second interview on the 21st. And they loved me (Why wouldn't they? I am pretty fabulous!)! They're going to wait until I recover so my start date is December 1. I am so so happy that I don't have to look for a job as I start to get better, that I have an even better commute than I had before, I get my own office, and most importantly, I get to do what I really really enjoy.
So I guess the lesson here is to keep your head up, just as you are struggling in life (i.e. pain), God has a plan for you and he might surprise you at the end of the day with something totally unexpected :)
My aunt, visiting from Brazil, got tired of the waiting too and decided to take a nap LOL
It's finally the eve of my 2nd surgery!!! As weird at it is, I'm really excited!! WOOHOOOO...I'm ready to get this show on the road and get better already. Thank you to all my friends and family who called, texted or emailed me today to wish me good luck. Once again, I truly feel loved and appreciative of all the support.
I had a really exciting surprise this week...got an unexpected email from a recruiter on Thursday about a perfect job 15 minutes away from home, which is exactly what I did and love to do...Marketing for Professional Services firms. They loved my resume and asked me to come in, after interviewing yesterday, they asked me back for a 2nd interview today. They are aware of my "situation" and the big dilemna is whether to wait, or not to wait...I think they'd be crazy not to, because after all I am pretty awesome! But I won't know more until at least some time next week. It would be fantastic to know I have a job as I'm recovering!!!
But on other breaking news, I wanted to post a couple of pics of my right foot before I say goodbye to it:
Today I was very happy to "meet" another blogger I've been in touch with since I started this blog. I had the pleasure to "meet" Lenka over the phone for a podcast she's doing to kick-off CMTA Awareness Week.
Lenka lives in California and interviewed 3 people with CMT from North Carolina, Texas, and Connecticut (me). We have CMT types 1A, 1B, and 2. She wrote a great entry on her site as a result of our discussions.
Please take a moment to read and listen ... It really is amazing how people spread all over the US who have never met can have such similar experiences. If you want to start by listening to my conversation with Lenka, fast forward to minute 60:
CMT Awareness Week is almost here and the CMTA (Charcot-Marie-Tooth Association) has set up this special website: www.wearethecmta.com
Please take a moment to browse through the site where you can find facts about CMT, events going on this week, the many faces of CMT (can you spot me in the crowd?), and most importantly, donate. If you can, please donate to CMT research so hopefully we can have some form of treatment or medication in the near future and who knows? Maybe even a cure....
Today I woke up with a phone call from my surgeon's office "about my surgery on September 20th." Immediately I thought "OMG What is the problem now?"
For some reason, Dr. Feldman can't do the 20th anymore, so now my surgery will be on Wednesday, September 22. While I am not horribly upset, I am a little annoyed because I am so ready to get this show on the road.
So I guess I have 2 extra days to paint the town red!
Today I am so so sooooo happy! Happy that I decided to re-schedule my surgery to September 20 (It was originally scheduled for August 27). So happy that it has been four and a half months since my first surgery and I'm feeling so great.
Yesterday, September 4 was just an amazing day.
First, I got to meet my little nephew that came into the world at 4:38am...Cristian is healthy and chunky at 8lbs 10oz and 21 inches long. He is just so beautiful and adorable! Congratulations to John's sister, Heather, and her husband, Joe.
Then, I headed off to Jersey where I would go see my idol, my favorite singer/performer of all time, Ivete Sangalo, perform and record her 4th DVD at Madison Square Garden in NYC. I bought these tickets months ago when I was still laying in bed with a cast on my leg, not knowing how I would be feeling by today. But I love her so much that I would have gone even if I had to sit in my wheelchair the entire night. It was a FANTASTIC show and it truly felt like we were back in Salvador....Bahia....Brazil....
I've gone to many of her concerts back in Brazil and to think that this time she would be here, so close to us...I really couldn't imagine myself not going to this, regardless of what condition I'd be in by now.
I am so thankful that my foot is feeling better...I danced, jumped and sang at the top of my lungs for 3 hours...of course taking breaks to sit down during the slow songs. And to my wonderful surprise, my new footsie wasn't even swollen when I got home and didn't need to be iced. I enjoyed the chance to party because in 2 weeks I'll be back in a cast...starting the next chapter of my recovery process.
Since I still have 2 more weeks of freedom, I'm going to enjoy baby Cristian as much as I can, celebrate John's birthday on September 8, go to a wedding on the 10th and dance with my hunny, hang out with friends and family....
I am so ready for this surgery. I can tell how much better my new foot is compared to the old one and I'm ready to have two new feet ... I hope the 2nd time around is as great as the 1st one....
Life is so perfect, even in its apparent disastrous ways. I thank God everyday for His presence in our lives and the knowledge that no suffering comes without a cause. With that in mind, I wake up every morning and find strength to ignore the screams from my legs and hands and the deep desire to stay in bed, give into the numbness and the pain.
Hi, my name is Milena. I'm Michi´s younger sister (25). I, unlike her, have no talent to keep a blog. I truly admire the people who do. I specially admire my sister who has always been an example in my life; a true light in the dark.
Michele and I have always radically differed when it comes to exercise. I have always been very active; I loved to work out at the gym with weights. I danced, swam, hiked, practiced yoga --and managed to do all these with regularity. One day I was at my desk at work when I felt tingling sensations in my right arm. I was 23 at the time (the same age Michi was when she was first diagnosed with CMT). I went to the hospital but they couldn’t figure out what I had so they immobilized my arm up to my elbow. A couple of days later, the tingling hadn’t stopped, so I went back to the hospital and this time they changed the cast to one that reached my shoulder. I returned home but 6 hours later was in the emergency room screaming from pain and begging them to remove the cast.
Milena doing yoga in 2007
After that day at work, we all began wondering if I could possibly have CMT too. We weren´t aware then that it also affects the arms. So I fooled myself for some time thinking it could be something else. Two weeks later, tingling and pain spread to my left arm and 2 weeks after that it spread to both my legs and feet. I started feeling numbness in my feet as I was walking to physical therapy one day and suddenly couldn’t take another step.
Life changed drastically since that first tingling sensation. I was forced to quit college, stop working, sports and any hobbies that gave me a work out ... Michele had the patience to sit on the phone with me and hear me talk on and on about everything she always felt. It was a new and scary world for me. She took my hand and showed me the way when I was so overwhelmed and afraid that I couldn´t even think of the next step. Kalila, our other sister, the only one who doesn´t have CMT, was the best 'nurse' anyone could ever hope to have. She washed and brushed my long hair... She helped me eat, and sat beside me when I cried; whether it was because I was in too much pain or because I missed my old life. A life, I realize now, I´ll probably never go back to.
Me, Milena, and Kalila
Time passed and I got used to CMT and learned to live with it. Now I’m back in school, started practicing yoga again, and with the help of my boyfriend went back to walking/jogging. I jog for like 2 minutes without stopping and it feels amazing!!!!
I know God was very good to me, he prepared me through Michele. In all this time and through all the pain, Michi has never asked "why me?" She accepts her struggles and makes the best of it. She is such a beautiful fighter! It´s an honor to be her sister.
While I've gone thru some CMT turmoil, I have much to be grateful for; a comfortable home, food… I am blessed to have a wonderful man in my life who helps me and encourages me to move forward, and most importantly, a family whom I thank everyday for the love and support that has never failed me. Even with CMT, I am happy! It slowed me down, but it won't stop me from dreaming and from achieving the things I want in life.
I couldn't sleep on Wednesday night (shocker!) and I was browsing the net at 3am on Thursday and found Bernadette's video (see previous post). After viewing and really being touched by it, I scrolled to the bottom of the page and realized they were having a fundraiser that very same night in NYC. I sent the info to Jess to see if she wanted to go to the event with me.
To make a long story short, we were really happy to make it to the event, had the pleasure to meet and talk to Bernadette and also met Allison Moore, the Founder and President of the Hereditary Neuropathy Foundation, an organization dedicated to finding the cure for CMT. It was really nice to hear how much is being done to help find a cure for this debilitating disease. I commend Bernadette for making this video and sharing her life and story with the world...
To watch more of Bernadette's video, click HERE. The video is right on the home page.
Me, Jess and Bernadette
Today I had the pleasure to meet another CMT'er who originally reached out to Jess. Lisa and I talked for hours about CMT and how it affects our lives and I really felt like I've known her for a long time...I actually feel this way when I meet and talk to most CMT'ers.
These are complete strangers who share my struggles and who really understand what I'm going through. It is so comforting to talk to someone who really gets it.
It's funny that I started this blog only as a means to keep my sisters, who live in Brazil, updated and also because I didn't have to tell all these stories so many times. I figured it'd be easier if they just read it. I never meant to send out the link or share it with anyone. And little by little, this blog has connected me to so many people that I may never had had the chance to meet had it not been for this. I am really happy to have met them and hope that we can be there for each other...especially during our upcoming surgeries =)
I just stumbled upon this video on Nattering Nic's blog and I am BEYOND excited!!! The word on CMT is getting out more than ever and this just gives me so much hope that help is on the way.
Click below to see the trailer that brought tears to my eyes: "Bernadette"
How exciting that CMT gets an entire week to help build awareness??? Hopefully this will be brought to the attention of people who can really help to make a difference.
I will be celebrating in the hospital since I am getting my 2nd surgery on September 20.
I don't know if you've noticed that my entries have been a little bit more spaced out lately...I am happy to say that is because I've actually been living life and making up for some lost time. I spent so long sitting and so much time inside during my recovery that as soon as I started walking and feeling better, I started taking some advantage of it.
I just spent the last week in New Jersey with my mom and it was great!!! I finally went to the beach and started working on my tan, went to lunch with friends, visited my friend and her new baby, went to a bridal shower, surprised John with skydiving, spent the day at the pool and BBQ'd, visited a new dear friend and fellow CMT'er Jess, went to church, etc. It was just a really happy week!! It was great to feel normal again. Oh and it's also great how everyone is so happy and excited to see you after going through such serious surgery!
But in all honesty, I think I did too much. I was just soooo tired by the time I got back home to CT that I was a zombie all day yesterday. And to make matters worse, CMT brought me back to my "real" life and I fell pretty hard in our office yesterday. My right foot slipped in the flip flop and I lost balance. I didn't even have time to try to find something to hold on to, one minute I was up and the next I was hitting the ground. Thankfully, my left foot wasn't hurt. But as with any good fall, today my body is sore everywhere so I'm taking it easy big time.
During my awesome week, I also saw my surgeon for a final follow up and we scheduled the surgery on my right foot for September 20. So I have about 6 weeks to live up the end of the summer, before I'm in bed for a long time again. But I am really really really ready to do it. I am ready to start 2011 on a new page, with new feet.
Thank God everything in life passes...and I am sooo thankful that the excruciating pain I felt a couple of weeks ago is gone. My old pains are back and I can't tell you how happy I am to be just having my regular pains...LOL. Sometimes life really puts things in perspective for you!!!
It has been 3 months since my surgery now and I continue to reach milestones...like dusting off my car (literally) and going for a ride. My car sat for so long that a spider decided to keep it company and build its home there!
In honor of my 3 months, John and I went to celebrate by having lunch at Olive Garden...OH MY! How I missed their food!!!!!!!!! To say I pigged out is an understatement. After our wonderful lunch, we went shoe shopping because I am tired of wearing the same pair of sneakers every day. I asked one of the shoe store employees to give me one of those foot measuring things so I could figure out my shoe size once and for all. Well....my shock wasn't to find out my NEW shoe size, it was to find out how little my original feet really became.
In high school, I used to wear a 6.5. Well, this weekend we found out, my right foot is a size THREE!!!!!!!!! 3...TRES...III...TROIS...TRE!!! Isn't that a child's size? No wonder shoe shopping has always been a dreaded event for me...and my new shoe size is a 6, which is nice, it's average. It should be easier for me to find shoes from now on and I left the store with a new pair of sneakers :)
Having surgery and recovering during the summer is definitely not one of the easiest things...I am constantly icing my foot to keep the swelling down, it's so hard to match my cute summer outfits with sneakers or my boot, I am definitely not wearing flip flops outside in this heat...but on the upside it's one summer of my life. And I'm hoping by next summer I have two pretty new feet to flaunt.
So...to celebrate that my funky mood is gone and that I am walking and that life is good and 3 months went by quickly and my next surgery is on the horizon and the excruciating pains are gone and my new size 6 foot and that I'm lucky to be alive...cheers to getting better!
This has been an amazing week, while also awful at the same time. We traveled to Newport, RI for the 4th of July with two of our favorite couples. It was just a 3-day getaway, where we saw beautiful places, laughed til we cried, and just had a fantastic time. We brought my wheelchair so I could be rolled around the entire time and not take away from our day trips. Thank God for John who pushed me all weekend, even getting calluses on his hands....I don't know what I would do without you. My foot felt great and I was able to walk around a little bit and get up to take pictures.
Unfortunately, as the rest of my body felt great and happy, my legs reminded me CMT doesn't take time off. It was difficult to fall asleep and I tossed and turned in bed all night, waking up in the morning crying. It felt like the pain in my thighs reached new heights, getting ready to test me again. Now that I have been used to my old friends, they've decided to up the ante and see how much more I can take. Thankful for the support, I got in the shower, took a pain med and went out. I wasn't about to let CMT ruin my fun getaway.
Thankfully the super-meds helped me throughout the rest of the weekend, but it left me very thoughtful and honestly, sad. This was such a simple trip where I got wheeled around 99% of the time and my thighs were so painful (on a scale of 1 to 10, I'd say 11), that it made me wonder if I'll be able to take some of my dream vacations. Will I ever be able to go to Italy and walk the cobblestone streets? What about Greece? All these beautiful European countries I want to see with my own eyes, where so much walking is involved. And obviously once you open the can of worms, only worms come out...what about having a family? Will I be able to keep up with a kid?
And if it wasn't for the thinking alone, but the pain has persisted, even after we came home. Sure, the first couple of days I blamed PMS (it normally gets worse with PMS)...but it's Friday and I'm still having trouble sleeping because my body is so uncomfortable. So it's just been a little bit of a sad week for me, not mostly sad because of the thinking, mostly sad because I am hurting and there's nothing I can do about it.
But I am not a sad person, so I am allowing myself these few days that I'm more emotional than usual (thanks to PMS) and just crying my tears and starting to feel better. And today I am back to me again. But I do think I need to adjust my thinking and prepare myself if this new pain decides to stay so I can just accept it and move on with my life.
Even through the bad, I am appreciating the good. This week I am walking with no help, I am just walking. The swelling has gone down a lot and my foot is looking a lot more normal. And I've tested the waters by taking a few steps barefoot on my hardwood floors and guess what? No callus pain on my left foot...which is so strange. I can't even remember the last time I had no pain when I stepped down. Step with the right foot, there are my calluses and they hurt. Step with the left...nothing! I guess this is what people with normal feet feel like all the time. I can't wait to have no callus pain at all.
I didn't realize just how much I had missed walking until last Friday, the day when I started walking without the help of crutches or walker (but still with the boot). It felt SOOOO good to move around the house, to help out, to be more independent.... It just really felt unbelievable to be able to move again after 2 months of much sitting and passing the time.
I guess the Gods heard my complaints last week and not only did I get to walk, but I actually also got to put on a bathing suit and hang out by the pool with my family. I also got to hang out with many friends from church at a fundraiser BBQ and watch the Brazil game together. Little by little it feels like life is going back to normal.
On Tuesday, I had another follow up appointment with Dr. Feldman and I am actually ready to walk on my own...no boot, no crutches, no walker. He was so proud of his work and of my progress that he fake cried - that was actually pretty funny. He is so impressed that he said I am at 2 months where patients normally are at 6 months. Go me!!!! And to prove that my foot is really good, he smacked it around a bit lol. He decided that we will do nothing more to my left foot, no need to go in and take out the pins. He said I should be fine with them. And we also scheduled the surgery on my right foot for August 27...I am ready to get all of this done and back to my real life.
I walked out of his office in sneakers. It was very liberating, but also very weird. It's hard to describe but it just doesn't feel like it's a part of my body yet. So the last 2 days I've been pretty active (but not over-doing it) around the house. Unfortunately yesterday it started to bother me a lot and it was very swollen, like my own little watermelon. So today I am forbidden (by John) to walk. LOL. So I am back to using my walker and icing it a lot in hopes that it will go back down. I also have my first physical therapy appointment later today so that should be fun.
If I am learning anything from my experience, it's not to take life for granted. Sometimes we get boggled down by problems and the simplest things can upset or depress us and we may complain about how unfortunate we are. Well, if you are living, breathing, walking, and most importantly, if you're healthy...you already have so much. The saying "You don't know what you have until you lose it" is so true. So don't wait til you "lose" things to realize how important they are. Just be grateful for today!
Time really goes by so fast...my surgery was exactly 2 months ago today. I have to admit the 2nd month was a lot harder than the first. I miss those good ol' days when I could take the SUPER-meds and my pains were all gone. Since I stopped taking them after the first month, life has been a little more complicated, and at times, A LOT more painful (not my feet, but my thighs). But the funny thing is that even though life can get difficult, it also finds a way to show you joy...
My foot is healing nicely and it feels good. The scars are healing great, except for the one by my ankle (which I pulled the scab before it was ready to come out. I know I know!!! I shouldn't have!), so that is taking a little longer to heal. I am walking with the help of the boot and either with the crutches or the walker (I prefer to be an old lady just at home). After keeping it down for a while, it gets somewhat swollen and I need to ice it.
I try to keep a positive attitude as much as possible, but I have to admit this whole situation got the best of me earlier this week. I was just moody and annoyed that I can't be outside and enjoy this summer. I was annoyed that I still need so much help with things that I could've easily done on my own before, but mostly I was angry about the summer. This is my absolute favorite time of year and now I only get to see it through the window. It's June 16 and I haven't even put on a bikini yet (I know this is so minimal in the scale of things but remember, this was my venting day).
Also, my disability claim got denied...like seriously?? When I told my surgeon, he said it was impossible. I could probably write an entire entry on how the system is so messed up, but for now, I'll just say that I am getting some legal assistance to file an appeal. Hopefully, things will go in my favor.
Thankfully, my mom came to the rescue with my dad on Monday. It was great to have my parents here the entire day. She helped us so much by cleaning the apartment and bringing tons of my favorite foods for our freezer. She and I went through my shoes to clean out my closet and most of it had to go, so my sisters will be the lucky recipients of all my shoes. It turns out my foot is only a half a size bigger, it looks like it's so much more because my right toe isn't straight.
It's also been great to have the World Cup going on right now...it's kept me really busy. I've never watched this many games or been aware of so many teams' stats. Brazil had their first game against North Korea yesterday and it wasn't too impressive but they won. I'm excited to watch the next game in Newark with a bunch of friends and some Brazilian BBQ.
Despite feeling a little down this week, I am grateful for little by little regaining some of my independence. I can now completely shower on my own, I can walk and go up and down the stairs, I can help around the house a little (helping with dishes or making our bed), I carry things back and forth in my trusty tote bag, walking and putting pressure on my foot feels better and better every day. I am completely off pain meds and even though my leg pains are very strong, they're only a little stronger than before and I get used to handling them. I have also been sleeping much better. It's amazing how simple these things are in our lives that we would normally take them for granted,but for me, every little step and every new thing that I can do on my own gives me such a huge sense of accomplishment.
I really miss the normalcy of life, being independent and being a regular member of society, getting in my car and going anywhere I want. But then I remember that I am doing this to have a better life and that eventually I will have all those things back and more! So I try not to think that it has been a long 2 months, but instead, I'm 2 months closer to achieving a healthier and happier life.
PS: I want to dedicate this entry to Tia Ana. She lives in Brazil but somehow figured out a software to translate all my entries to Portuguese and now she's an avid follower of my blog and my progress. Thank you Tia! I love you!!!
Or I felt too much like Superwoman that I overdid myself. Since I am blogging to document everything, I really should say today was the COMPLETE opposite from yesterday...
I felt fine in the morning and as I got ready to go to the movies with my girlfriends. I even managed to go down the 5 steps out of our apartment building ok. Right foot first, then left foot, right, left...ok! Well I wasn't paying attention when I stepped off the curb into the street and I stepped left foot, then right foot and I freaked out that I changed the order. I might have been ok but I wobbled a bit and kind of just banged into the car. No biggie.
Well, as soon as I got out of the car at the movies, I was definitely in pain and it only kept getting worse. We watched the movie and went back to Emily's house where I saw my foot was swollen (1st time it happened since the cast came off). I spent the rest of the day icing it and keeping it elevated. The pain from laying down all day has bothered me so much, I'm still up.
I have to admit, I am a little disappointed. I was so excited to be independent yesterday and today I went backwards. I get that this is part of recovery, but I am still a bit bummed. Another part of recovery that I need to get used to is knowing my limits...since I've never done this before, I don't know when too much is too much. But as with everything else, I will get the hang of it.
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 :)
