CMT Awareness month

So September is CMT awareness month. I dont really know what that means for me. My blogging gal friends are dedicating posts and submissions to spreading awareness. My CMT Facebook groups are full of pictures and posts regarding the awareness spread. And I am doing zilch. Remember I grew up not even really knowing I had anything. We barely talk about this as a family which has its good and bad sides. I'm not into standing on the rooftops and shouting 'I have a neurological disease WORLD, Just wanted to LET YOU ALL KNOW!'. Although I do have admiration for folks that can and do do that. But to be honest, its just not what September is for me.

For me September is (deep breath) Finishing summer stuff - Getting ready for fall - heading back to work - figuring out day care for kids til they start school - orientation and school beginnings for each of my children and my own students - adjusting to a new routine at work - packing away summer clothing - pulling out fall stuff - buying school supplies, clothing, and other needed items for the school year - Oh and BTW for those of you who arent Jewish and may not be in the know, September is generally 'holiday season' for us. There are three-four (depending on how you count it) big holidays including Rosh Hashana (our 2-day new year), Yom Kippur (big fast) and Sukkot / Shmini atzeret (8-9 day 'harvest' holiday). This year The first two happen in September, Sukkot starts the last night of September and goes into October. But the point is, there is a lot that needs to get done before, during and after the holiday in terms of shopping, cooking, planning, packing, driving, childcare arranagements for days the kids are off but i'm at work, etc etc etc.

So to make a long story short, this is whats been keeping me busy now. I'm somewhat overwhelmed at all the beginning stuff and I have developed some lovely corns on my feet and oh, right, my belly is expanding and i'm as tired as ever. So my contribution is opening this blog today and writing even though I'd rather just be sitting and watching a show or something.

I'm grateful to those who are raising awareness. I do think its good for the world to know and understnad what we have. I was sitting at a training where we had to raise our arms repeatedly for an exercise and just kept thinking 'I wish people would get that this is hard for me'. I'd love to believe that a cure will be found but I'm not placing major hopes on it. With all the modern day discoveries and all, dont you sometimes feel that science and medicine is way way behind on finding cures to awful illnesses? And I'm not even talking CMT, I'm talking CF, Tay Sachs, Cancer, ALS, etc. Why the heck dont wen know what do with those diseases? Why are most of them essentially just death sentances? :( It makes me so sad and sick and to be honest if there was a choice given to me if a cure could be found for CF, ALS or CMT I'd definitely pick one of the first to.

But happy CMT awareness month to all my pals. I'm so grateful I've found people who can understand me and a platform that I can share my feelings without worrying about being judged or misunderstood. Keep up all the good work for those who are spreading awareness and going on interviews and getting into newspapers and all. I hope you'll be OK that my contribution is just trying to live my normal life despite these physical challenges and sharing the little I do share when I have the time, energy and frame of mind to do so.

On being normal

A good friend of mine (i know you are reading :) ) who grew up with me has recently said something interesting. Since reading my blog and hearing more about some of the issues, she says she feels bad because  she always thought of me and my family as normal. Like we had a specific walk that set us apart from others but that was pretty much it. She is only starting to realize that we have this Issue that is actually pretty serious. And she feels guilty that she wasn't more supportive and there for me with this big thing that was going on in my life.

I told her I am so HAPPY that she considered (considers) me normal. I thrive on that. While I wish my family was a little more open about our CMT and I had got things like orthotics when I was younger, I am so relieved and happy that most of my childhood was a pretty normal and happy one. Issues i had were nothing to do with my feet. Only as I got older and felt a little clumsy did it affect me a little.

Anyway, I think about this somewhat often. Normal or not normal. Disabled or Fine with just a little difficulty with some areas. Living with a Big Issue or living with a challenging but dealable issue that doesnt take over my life. This is massively Sucky or eh whats the big deal. I vascilate from feeling one way or another. I also sometimes wonder how to feel about myself, and I know how I feel about and present myself will possibly be how others perceive me too.

Bottom line is, at the end of the day, I do think I'm Normal. Is anyone really normal? :). I mean I think I'm pretty typical in many ways. I think i'm a pretty regular person with an Issue that sometimes really bothers me but often does not. I am real about how sucky CMT can be at times but I usually don't let it overwhelm me and cripple me from doing what I like. I have a Masters degree, got married, have two kids and one on the way and a house a job and friends, etc etc. I drive and shop and host BBQs and get together with friends and family and laugh and cry and watch TV and take my kids on trips and put together awesome videos and so on. Yes its harder for me to do things like chores and errands and stairs and stuff. And I get tired often (apparently many folks do) And I spend a lot of time at night just chilling because I feel I can and should relax after running around all day. And sometimes I dont cook because I cant stand on my feet so I just pop frozen pizza or waffles in the toaster oven. But is there really anything in life I am missing out on? Maybe Ice Skating? Being able to wear heels (Ad is my height so no need for that anyway)? Cant think of much else. In the Grand scheme of Life I consider myself pretty darn lucky. I have So much blessing in my life. A husband who loves and accepts me. Amazing, adorable children. A home. A decent job which I generally enjoy. More or less financial stability. Religion that gives me a sense of a higher purpose and a community of supportive people. And yes, I'll say it, health. I am a healthy young woman who is thankfully able to get around and take care of myself and my kids. I am grateful that I can conceive naturally and have had generally easy births and recoveries after. I am of decent weight and can generally check off all areas of the 'no' section in those long doctor questionairres. This disease that I have is annoying but its not life threatening or life altering. I read through some of the Quest magazines and look at some of the other diseases under the MDA umbrella and think 'wow life can be soooo much worse'.

On that note, I grapple with how often and how much I should associate with some CMTers online. I love having people that 'get me' and understand me and CMTers will understand things about me more than anyone else. I have a really great core group of CMT girls online who are overall pretty positive and lead busy and active lives. I want that and I need that and am grateful for that. And if they want to moan and vent here and there, that's cool and I need to do that too at times. But its not every single day and there is as much, or more, good stuff going on as bad. I love being able to see Nicole's humor on her blog posts, Lenka's families summer adventures, Michele's wedding pics and Melissa's kids who are full of spunk and goofy faces. And yes, we all fall and bump ourselves and thats part of life. But then we get up and move on. We live. We push through. We are, for the most part, normal. But then there are some CMT people that seem to blast CMT and the symptoms all the time. Day in, day out. Constantly whine about it. I remember the yahoo group I was part of years ago, before FB was around. It was good that others got me but it got me so down to see how many folks were depressed and hated their lives. I ended up leaving and never looked back. So too, I feel with some of the CMTers I see on FB. I actually get annoyed with some CMT friends on FB that feel they need to complain nonstop. Its like 'cmon guys, get it together and DEAL. Its not THAT bad.'

I am rereading this and I feel like I am being insensitive to others. I really dont want it to come across like that. And I know I am lucky that my CMT is not that bad and people can have it worse and maybe they truly are disabled and have the right to whine and moan. I'm sorry in advance if i hurt anyone's feelings....
I think I NEED to feel that CMT is not such a big deal for my own sake, and more importantly for my children's sake if they are afflicted. The more people that whine and moan and make themselves out to be the world's biggest pity cases, the worst others with a similar condition will feel. CMT or anything. My kids need to know that even if they have CMT they still need to follow their dreams and do whats expected of them and work hard even if its not the easiest thing to do. Giving up, throwing in the towel, sitting and crying is just not something I want to be an option. At least not more than like once a month or something....

So after all that rambling and back and forth, cheers. To us normal folks. Whether with CMT or anything else that could be life-stopping but we don't let it. We keep pushing through and enjoying life and trying to focus on all the good. Cuz, at least for me, I know that i have a lot of things to be grateful for.

Ahem. (dust, dust)

So its only been a quarter of a year since I last posted. Not bad. Now that summer is halfway over (boohoo!) i figured its time for a loooong awaited updated.

Summer has been great. We started off the summer with a long-overdue and much needed vacation for just Ad and me :). Unlike some other vacations that I aimed for hiking and amusement parks, I knew we needed to just chill and spend a lot of time relaxing. And relax we did. We rented a house in Connecticut for four days which was right by the lake. We spent our days watching the water, boating, swimming, BBQing, eating, watching TV, shooting fireworks, snuggling at the firepit, etc. We got up late(ish) and napped when we wanted to. No kids to disturb or bother. One of the activities was getting me a manicure and pedicure. Chinese lady thought Ad was such a nice husband cuz he was hanging around :). Our one biggish outing was gambling one night in Moheegan Sun. We had never gambled together and it was a lot of fun. Yes, there was a lot of walking, but I held on to Ad's hand and we rested when I needed it. Plus walking in an AC'ed building at night is waaay easier then shlepping around in the heat of the day outdoors. We lost a bunch of money but I ended the night winning $14 on slots so all was good in the world. All in all a really wonderful time of chilling, reconnecting and taking a break from the regular day to day life.

I knew we needed this getaway badly and one of the reasons I wanted to keep it very lowkey was because I am not in any shape to run around.....for those not in the know, CMT will be changing from Two to Three sometime this December, god willing :). So I am taking it as easy as I can with the knowledge that my time of not mommying a baby is running out. I'm smack in the middle now (21 weeks really) and I love this stage. Obviously showing and wearing maternity, feeling pretty good but getting all the help and sympathy that I really need ALL the time and enjoying the fact that I have a few months left. As it gets closer I want to hash out my thoughts on becoming a newborn mommy again.

Otherwies the summer is just flying by. I'm worknig for 6 weeks and by the time I get my kids at 3 i'm bushed. I lay down almost every day. I try to get out with them once or twice a week even just to the backyard with the sprinkler on. But some days I'm just too tired. Oh well they get what they need to out of camp. I'm being a lot less ambitious this summer. Last year I'd drive all over every Sunday going to various parks or other free events. Now I mainly stay close to home; I just cant muster up the energy for much more. And its OK I guess. I have more friends locally than I did a year ago and my sister sometimes comes to swim in a local pool so I join her. Last Sunday we went to BBQ and pool in the Poconos which was a blast. Look how big my kiddies are getting!!

Thats it for now. HOpe to update more soon -- as always I have tons on my mind that I want to share and very limited time, energy and finger interest in typing it all up. I wish y'all could just climb in my mind a bit and say 'oh, yeah, I hear that'.

Laterz!

Stuff

Life is pretty good.

My kids are absolutely adorable at 3 and 4. I finally have reached this point in my life that I have two pretty independent kids. Not babies who need constant help. Kids who know how to get their coats on, climb into the car, feed themselves and tell me whats wrong. They are really good kids and I am lovin' life with them.

Speaking of kids, I took them today to an orthotist. Really for Yak, but he looked at Shain too. Yak's feet are turning and they slap the ground, y'all know the drill. His OT and PT want hiim wearing orthotics and I have to be the adult and do what's best for him. So we went. I'm pretty sure he inherited my wonderful neuropathy. Oh well. He's still absolutely charming and adorable. Interestingly this doctor prides himself on having kids wear orthotics that correct the feet and within a couple of years, they usually can be removed. I'd love that to be the case, but I guess we'll see.

Its weird, they are doing a Hop-A-Thon for kids at my school for the MDA. So arbitrary. I look at the handouts and kid-friendly books with easy to read words and cute pictures of wheelchairs and braces. And I'm like 'noone at work has a clue that this is talking about me'. I try not to think about it and I just downplay it. I like being normal and one of them.

I did end up emailing my old director and one coworker about my issues, soon after the yoga thing. Director sent me this inspirational magnet and told me she wants me to come back to yoga. I told her I would but never got a chance. One day.....

Coming up to busy part of year. Graduation, end of year stuff, etc. I love it :).

I want to update more. I hate that I pop up once every few months and then disappear.

Ups and Downs of Yoga and Super Bowl

Warning: A little long. I hope its worth the read and would very much appreciate comments.

Yesterday was one for the books. Some highs and lows and a rare day where CMT really impacted something that was going on in a big way.

My old director invited some of us teachers to participate in a yoga class, sponsored by her. I have mixed feelings about yoga and group excersize in general. I know I am clumsy and things are harder for me but I can generally do most excersize classes just at my own pace. I went to one yoga class in a gym which I found hard for obvious reasons but I was proud I made it through and I figured I could do the same for this one, just get through it at my own pace.

I made a big mistake by not telling the yoga instructor beforehand that I am somewhat limited. My old director knows that there is something a little off with me but nothing specific and because I am generally a typical teacher, there was no need to single me out. Just as a BTW, my coworkers don't know that anything is wrong with me. I think some of them may have noticed my handicapped liscense but didnt think it was anything major.

Anyway, just to preface by what mood I was in, earlier in the day, my kids' OT came to work with them at home. She, like the PT, pointed out that Yak's foot was turning and he needs orthotics. These things are so depressing and overwhelming for me even though they don't need to be. But they are a proof that YOU have CMT and YOU gave it to your KIDS and they will have to do stuff like WEAR funny looking plastic things on their feet all because of YOU. At least when I am in blah mood, thats what it does. And she is telling me that theres a great orthotist / MD but its a $75 evaluation fee and he may not take insurance which would make the orthotics $500. And she thought maybe shain should also get evaluated. We don't have that kinda money. We are looking into switching insurances. I am overwhelmed and don't know where to start and unlike my own self I NEED to get the kids what they need and the younger, the better.

Ok so that was what went down a few hours earlier. So I'm already feelign blah about myself and my CMT that I presumably passed on to my poor, innocent kids. But I figured let me get through and do my yoga and prove that CMTers can do anything. It didn't exactly go down like that. The first ten or so minutes of stretching was challenging, but doable. I felt like I was majorly struggling to reach all positions and 'look normal' and for the most part I was getting it. I was even thinking how I would write this blog about woohoo, I did yoga! The atmoshpere was nice and dark and somewhat soothing and no one was able to guess how tense I was.

And then she had us all sit all the way on our knees. And It was too hard for me, and the instructor said if we can't sit all the way down, we shouldn't. So I held myself a little further up. The instructor, a thorough and somewhat firm Asian woman looked at me and said 'your ankles are hurting?' and I said 'no, my knees' and she responded in a nice but admonishing way 'You are too young to have your knees hurt, you need to exersize more'.

Ow. Like a punch in my stomach. But I nodded and figured I'd continue at my own pace. Except the next thing she had us all do was crouch on the floor. At our own pace. And I was imagining myself falling and flipping and getting more looks and comments. And it was too much. I quietly went to the bathroom and just started sobbing. For those who don't know me I cry very easily and can't stop once I start. Its AWFUL. Its happened at work more than once and inside i'm telling myself 'STOP!!!! ENOUGH!! GET YOUR ACT TOGETHER!!!!'. But outside the tears kept coming.

I thought I was fine and left the bathroom and my old director came to check on me and of COURSE i started sobbing again. The thought that someone is coming to care always sets me off. She apologized and was like 'its hard for me too' and other stuff. I told her its totally fine and after crying for a few more minutes and drinking some water I returned to yoga. I think my director mentioned that I have some difficulties and that made me cry again. Interestingly the rest of yoga was super-easy. It was all laying down and turning nad hugging your feet and all. And I cried almost the rest of the time. Silenty as I did my moves and stared at the chinese rugs hanging on the walls, tears just rolled down. Every time she came to check on me and I thought of her comment 'You are too young to have knees like this', tears came poured out. She was right. I was so tired of my stupid feet. And I was so tired of pretening that I was normal and fine and could do everything nad anything like anyone else. One of my coworkers (there were only 6 in total) noticed and said 'Are you OK?", and of course I nodded yes.

Anyway, yoga ended, most of the coworkers zipped out and I was left with a couple of them . One of them (concerned coworker 2) was all trying ot make me feel better and I was almost laughing at some of her comments. She was like 'My SIL joined a gym and it really helped her strengthen hereslf' and I just thought 'You have NO CLUE!'. Afterward I spoke to the instructor, and of cousre began crying again. She was very apologetic and said 'please forgive me from my heart. I had stage 4 cancer and I know that the most imporatant thing is health'. After talking with her more, she said I should come back and she feels yoga can help anyone and now she knows and will only push me to what I can do. And truthfully, if i had the money and babysitting, I might even consider it. Because I really did pretty well considering and now that she knows, it will be way different. Then she finished the conversation by telling me about someone else that had a very big limp that she helped and said 'We all have something, we just have to work it through'. And comments like that are really the very best. Its like yeah, we're all struggling with one thing or another. For heavens sake she was DYING. Had to have chemo and stuff. And she pulled through. And even the OT from earlier was telling me she has issues with her feet. So I have CMT and she had cancer and the next person has a loveless marriage or is in a big fight with her family. And we just gotta work it all through. I'm not messed up or all that different despite my challenges.

I went downstairs to see my old director and concerned coworker 2 had waited for me and that was nice. I shmoozed some more, we joked and I felt a whole lot better. I got into my car, noticed it was already almost 5 and that I gotta GO! Just 1 1/2 hours till kickoff! These sobbing sessions usually end up being so healing for me. I can be real and open and get it out instead of having feelings inside bottled up. And now I was ready to join my brother and his wife in the city where they were (in the end) going to watch the big game with a bunch of friends. And as I'm cruising down the highway, getting more than a big pumped I was thinking about how lucky I am and how good my life really is. The sun was setting on the most gorgeous skyline in the world where I was lucky enough to live and and have the ability to drive in. The Empire State Building was all blue in honor of our hometown Giants being in the biggest and most exciting game of the year and I was on my way to be with family and friends who really cared about me no matter what. I called my bro and SIL who were also on the way from NJ and they were laughing at my story, my SIL asking 'what were you thinking going to yoga?' LOL. And here comes Kelly Clarkson on the radio singing 'What doesn't kill you makes you STRONGER!'. Amazing. I was on a massive high despite my bitter tears I was shedding less than an hour earlier. I managed to find an aweesome spot and meet my family downstairs and we made it inside JUST as they were starting the game.

3 hours, lots of hot dogs, burgers, chips and salsa and a massively exciting game of ups and downs (just like my day) the beer was flying as the Pats missed the Hail Mary and we were superbowl champions.

Life is Good.

Super Bowl Frustrations

I got to make myself some sports friends. Its kinda pathetic that my home team is in the biggest watched even the entire year -- and I have no place to go.

Sigh.

In religious circles, not everyone is into sports. Its considered a little 'not so kosher' to get all wrapped up with something like that. Especially not women. A lot of the guys are. In my family, my older brother is into sports and he got me into it. It was mainly Yankees baseball which I was lucky enough to start following in 1996, the year they won it all. And I've gotten a little into the other sports and especially football more of recent. I don't have a TV so eeverthing I watch is streaming. Which sometimes works and sometimes doesn't. But in general, not so fun to watch a big game on a little computer screen.

So my husband couldn't care less about football and I have like one sorta football friend. So its frustrating. My brother and his wife are into football but they live 2 hours away in New Jersey. Plus my sister-in-law is in school till 5 on Sunday, near where she lives so that's limiting. The past few weeks, we've been in touch via cell phone, cheering on the Giants over text. Last game he actually came to me and we watched togehter. This time, for the big game, apparently, he is going out to some hotel for a reunion of a few years back for just the guys. Great. So that leaves me and SIL floundering of where to go.

She doesn't want to go to a bar or restaurant, she wants to go to someoen's house. I don't know many people hosting it. I'd rather go to someone I'm super close to, but since that doesn't exist, let me go to a public place. I also feel a little uncomfortable going to a place where people sorta know me and couldn't care less about the game. Cuz I cheer. And boo. And yell at the football players. And for people that couldn't care less about the game, especially women, this is just weird.

So we need a place in between the two of us, location wise (prob Brooklyn), not with people wed be embarassed in front of, and something that we'd both feel comfortable with.

Oh and yeah, its gotta be kosher too.

From my FB status: 'why do i have a feeling that despite several decent options, I'm going to be watching the Super Bowl alone in my bedroom on pirated, chopped up, streaming TV?'

Updates

Two and a half months -- NOT cool! And I have thought about posting here and there but its a whole to do to sit down and post and it overwhelms me and when I get overwhelmed I distract myself and run instead of just sitting down and DOING what needs to get done. Ask at my work, I wait to hand reports in until I get a personal email or question about when its going to be in. Last week I actually made my husband unplug my Internet so I could sit and work work work.

Anyway, i'm here now (Thanks Nic!) and not getting up until I FINISH.

So some updates.

Yak's PT wants me to get him orthotics :(. I'm not suprirsed but I'm still sad. I don't know why. I kind of feel that both my kids probably have it because they are both somewhat clumsy but something like this is more glaring. DH actually mentioned that he was pigeoned toed as a kid and his whole family has flat feet so my kids are screwed no matter what :). But on the flipside, it could be that they just have bad feet like his side, not CMT per se. Anyway, whatever it is, his feet do turn slightly and orthotics will help hopefully. They wont be AFOs just orthotics I need to be a big girl and do whats best despite the fact I want to do nothing and just hope for the best. Only problem is i'm in the process of switching insurance for the kids, so i think I should just wait till March when they have new insurance. In the meanwhile, i'll see what is out there.....maybe i'll even be brave enough to get orthotics for myself. This PT doesn't feel that Shain needs orthotics so i'm happy about that. She is tired often and I'm going to ask my ped what he thinks, if he thinks its related to having poor muscle tone or whatnot. I think all problems stem from CMT. lol.

On me, I am tired a lot. I often think of telling my boss or some coworrkers that I need a job with more sitting. Its hard to be a preschool teacher and do movement classes with them and stand outside and deal with them when they make trouble and stuff. And I do feel like I slack a lot because I am often tired and not physically energetic and strong. And I feel bad that I slack. I kinda wonder if an opportunity for sitting came up, would I grab it. part of me would in two seconds. But I wonder if i'd just slack off and waste time on the Internet. Now at least I am alive and dealing with people and stuff. Who knows, we'll take it as it comes, one day at a time.

I am extremely grateful to God and Mother Nature for giving us the most mild winter to date. It has been spring-like here and makes getting out and about much much easier. It snowed once on a Saturday and was gone by Monday, I'll totally sign up for that being the only snow this season. People don't realize how awful snow, sleet and ice is for us - I mean its dangerous and scary for everyone but people with bad feet have it way worse! My hubby actually commented that I haven't fallen in a while and that is true and good. Let it continue :).

A close family member (with CMT) is planning on getting pregnant. The couple has another, much more serious genetic issue to deal with so they are doing PGD (http://en.wikipedia.org/wiki/Preimplantation_genetic_diagnosis) to rule out their child having that disease. Once they are going through the time, process and money of doing PGD it only makes sense for them to take out CMT which is also something that is able to be eliminated through PGD. I have to say, I'm a little jealous. I mean I'm super-greatful that we were able to conceive naturally and fairly easily and that we avoided the difficulty of doing IVF. I know its not all fun and games and its not something I'd want to do if I had the choice.

But there kids are definitely not going to have CMT. And that is pre-ttty neat. I hope by the time my kids are ready to have children, if they do have CMT, this type of help will be even easier and more attainable. Or CMT will have been cured :). Why not dream for the stars?