I'm Officially a Pill Popper!

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!

Wish me luck!!!

Healthy, But Stressed!

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 :)

Snow Days

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.

Happy Holidays!!!

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.

Thank you for all the help this year

And for seeing me through these 2 surgeries

Swollen Much?

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.

Week 1: SURVIVED!

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 am ready for Week 2  :)

Ready.Set.Work!

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!!!

My Very Own Power Chair!!!!

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!

9 Shoes in 2 Days

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.

New Pics of My Footsie

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.

Two new feet

Two old feet

New Pain Management Doctor

Yesterday was a very hectic day in NYC. We started out going to see Dr. Feldman for a follow up appointment and thankfully everything is ok with my foot. The x-rays don't show anything unusual. He says I just overdid it and even though now I'm full weight-bearing and off the boot into regular shoes, he just asked that I take it easy for a few days so my foot can rest. Actually that's all I've done since Friday night. I didn't put my foot down on Saturday, Sunday or Monday and yesterday, after having to walk a bit, it kinda started hurting again towards the end of the day. Note to self: no more going to see 3 houses in one day for a little while.

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!

Sometimes Things CAN Get Worse...

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'm in Pain...

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?

This is the reason why I'm so hopeful: Pain Management Doc Helped Woman with Unthinkable Disease

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 :)

How she will look in a couple of weeks :)

Bittersweet Feeling...

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 free again!!!!

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!