On being pregnant with CMT

The five of us blogging CMT gals have really reached many people and keep raking up the hits. We officially have a real domain name instead of just a blog name, www.cmtclicks.com.

Heres my latest post: http://www.cmtclicks.com/2012/09/on-being-pregnant-with-cmt.html

New post on dating

I am part of a CMT group that is blogging together on one blog in honor of CMT Awareness month. I wrote about my experiences with dating and CMT, so head over there and enjoy!

http://cmtclicks.blogspot.com/2012/09/cmt-and-blind-dating-in-my-circles.html

I fell today

Lets give a good ol' We Love CMT Cheer! Oh and it wasnt in the privacy of my home either. It was on the very crowded steps of my daughter's school on the very first day of pickup. Good job Esther.

To backtrack a drop, y'all know how busy i've been. Today was the official first full day for both my kids. They go to two different big schools a few minutes from one another; Yak is in an all boys school, Shain is in an all girls schools. And they are both humongous. Very different from the 15 kids in a basement playgroup they went to last year. So today was my first day of pickup. i wanted to be early. For the kids sake, and cuz I knew the closer you get to dismissal (3:00) the crazier pickup gets. First I got Yak at 2:40. his shcool shares a campus with my work. I figured I'd zip in, grab him, zip out to my parking lot and get to Shain at 2:50, still on the early end. Avoid the whole 'carpool lane' in just one school. Yeah. I didnt factor two things in. 1 - my darling son didnt want to go with me. He WANTED to wait til the other kids got picked up. So it was a song and dance til I got him to come. Then, the gate leading back to the lot was locked and noone was there to open it for a good 5 minutes. Poor Yak was impatient and tired and so was I. I have to get myself one of those cards so I can do this normally next time.

Fine, we finally get to Shain about 3. Still not awful. Now its my first time EVER doing this. Where do I wait? What do I do? I drive here and there and finally find the carpool line. It stretched down the block. And Around. The. Corner. OK, I decide to find a spot and go get her. Yak gave me a hard time cuz he wanted to stay inside but I managed to convince him to go and maybe wed play in the 'park' (school playground). Fine, we go in, Shain is standing in this HUGE and crowded gym where people with walkie taklies are radioing who is getting picked up next. I was glad I parked. Gave Shain a hug, started to leave. And then. Thats when it happened. THere are 3 small stairs. Two kids pulling me. A long skirt. A different mom that I recognized and started to chat with. I knew it was happening as it happened. I went down and scraped my legs. I pushed the mom down I was talking with who was holding a baby and Shain fell. Really awesome. Lots of people out there too. The good news was that the other mom wasnt hurt and neither was Shain although she started to cry (duh). The other good news was it was such a hectic time that it wasnt like I stopped traffic and the whole world was like "OMG are you OK?!'" I got a couple of that and so did other mom but when they saw I moved, they went on to other stuff. I was, of course, mortified. And in pain. Big scrapes on both legs and swelling too. Sigh.

To make the rest of the day short, Shain stopped crying right away. I hobbled along. The gaurd didnt let us play in the playground cuz other kids were there. Yak was not happy. On the way back to the car I passed a sort of aquaintance who lived there who let us play in her yard for a few minutes. I got the kids back in the car and in this point I'm really feeling it. Somehow I make it hope and thankfully Ad is there and he helps us in. I kinda collapse with all the stuff and wash my scrapes in the tub (owwww!). Then he has to leave. I knew that later that night I had an engagement party and appointment at a kids clothing store and need to get to both around 9. Oh and did I mention I get no sleep anymore cuz baby keeps me up and in the bathroom. Seriously I got 5 hours of sleep last night. So Im exhausted.

At this point its almost 4. I'm just grateful I'm home and can rest a bit. I grabbed some dermoplast from the bathroom (yay for having had babies and getting that stuff from the hospital!) and it helped numb the pain. A bit of ice goes on. And then put my feet up, lay back on the couch and head to la-la land. My kids were angels, I only had to half yell at them twice. I slept till 5:30! I promised them both 'Mitzvah notes', which are good deeds they do that we write to the teachers and they feel all proud. Thankfully Ad had put up pasta earlier so we had dinner, did the bath thing and into bed they went. I was supposed to do a shopping with kids after school but obviously that never happened. Yak is in a size 3 diaper and I hope he doesnt wet the whole bed. But if he does, we'll deal with it. When kids are finally in bed, I help myself to some delicious comfort food of macaroni and cheese and eat way more than my share. In bed. While playing these addictive mystery games on my iPad that Ad and I have been enjoying together. I realize I left my phone in the car but I dont care. I needed that total recovery and me time to just get over everything.

Well its getting late now and I have to get dressed and do the rest of the stuff including a small shopping (always easier without the kids). I feel a lot better physically and emotionally as well. Its funny, there were points in my life a fall like this would have devestated me and humiliated me and made me want to die. And I think I am ok. I mean i was in pain and embarassed but I got over it quickly. And was grateful the kids were fine. People do fall, even non CMTers so honestly I dont need to sit and cry about it. I havent fallen in a while and god willing wont for a long time to come. Alright, going to get dressed for party and run. Thanks for listening!

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.