Friday, September 21, 2012

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,

Heres my latest post:

Tuesday, September 11, 2012

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!

Monday, September 10, 2012

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!

Wednesday, September 5, 2012

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.