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!
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 :)
