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i've been updating my other blog regularly

 thanks for those who came to comment. slowly but surely i'm showing it to more people.

Friday night dillemma. 

New cmt blog

I posted earlier that I wanted to have another blog, mainly to include the CMT friends i've made and get a littel more public with something i've gotten more comfortable sharing and wanting to get out.

So here it is, if u don't already know through facebook:


I hope to post there more often than I do here and also to post here on stuff that belongs here.

Love u all!

and i love my husband he got me a new screen thats AWESOME!



haven't spoke to my aunt since that phone call. oh well. hopefully will soon. also want to speak to anotehr CMTer who is recommending the personal trainer. On my list of things to do. Purim and the time before and after have been so busy. DH's mom was here, lots of fun. Family reuinions of frum, nonfrum and nonJewish folks. Still no excuse. To do list.

Like God is sending me a message I was talking with some cowokers who are PTs about orthotics. One of them hears my situation, pulls out his phone and makes a call. Apparently he knows an orthotist who can hopefuly help create orthotics at little or no cost to me. The guys is coming Monday to meausre me. I'm petrified. And a bit excited.

I want to blog in a more publice area. Maybe semi-public Not sure how to go about doing that. I feel like this is LJs site not really mine. And I want to use my real name, pictures, etc. I hate typing. Thats why I dont write more often. I do have so much to share. Maybe I can talk into a mic.

Laptopt screen is half broken. SO annoying. Excusxe spelling erros.


Starting to like community more. Someone moved in aroudn the corner with little one. HOpe to be friendly with her. I feel like theres more promise. i like my shul though i still want to chekc out the young israel for more diveristy. but im meeting peopole of different ages and backgroudns which i really like.

K this screen is AWFUL. bai.

Phone convo with aunt

I'm sorry I haven't posted in forever. its too overwhelming to sit in front of a blank screen, knowing you have so much to say and share and just not have the energy to do it. But I'm going to at least try now. 

My heart is aching in a good way. is that crazy? its been after a good cry and a reason for optimism in several different areas. 

i have an aunt, I'll call her Aunt Rachel. My moms from a big family of a long of strong personalities. Rachel is my mom's youngest sister and my very favorite aunt of all time. Shes the one that always bought us birthday presents, sent us cards, and took us to the Ice Capades and Broadway shows and dinners. She has a very special place in my heart. Rachel never got married. Or she did once for a very short time and that was that. I know she is very sensitive which can be a great thing or difficult. She is so scared of being a burden that she's closed herself off from a lot of us. She also finds going to family functions painful because everyone is there married and with kids and whatnot and shes not. But I still have a special place for her  in my heart.

Recently I've been thinking of her a lot. She lives a half hour from me. Why shouldn't she be in my life? I'm sure she'd love my kids and I bet we can reconnect and find things to talk about. I'll show her i'm normal and very interested in having her in my life. Anyway, I reached her (not an easy feat) the day before Presiden'ts day. I told her I was going to an indoor play gym right near her house and I hope, hope, hope she can meet me there. She sounded happy to hear from me but didnt committ to joining.  The whole 3 hours I was at the playgym, I spent half looking out the window to see if she was coming. i called and left messages but she never showed up. called me later to say thanks for coming but she had errands. Disappointing but i didnt want to give up.

Anyway, she went away and I knew she was back. She already said she has Purim plans, but I was inviting some other aunts so I figured i'd invite her too. I reached her on the first ring, very unusual. Small talk, invite for purim, she'll see, some talk about an older aunt that has alzheimers, but it was all a little unnatural for me. She asks about kids, i tell her, and I feel like the convo will end soon. She asks me how are the kids, how i'm doing, etc. And I decided to share something challenging. See what happens. 

So I say 'my feet have been hurting, there getting a little worse'. She was floored. I told her more. SHe had no clue. And this is where my wonderful, sensitive, kind hearted Aunt Rachel returned to her old self. She kept saying 'oh hon, i'm so sorry. I didn't know. i didnt know. your mom never told us. It felt so good to get the mommying. Of course her feelign all bad (though she assured be it wasn't pity it was empathy) made me feel bad because the sitch really is yucky even with me trying to be all spunky and oK with it all. And I started crying. And she really felt for me. And it was so good to be able to share it and talk and have someone understand, someone who really does love me and wants me to be happy. and its my Aunt Rachel who I love so much and want to be closer too and is so real and sensitive. She even said if she knew about this, she would have looked out for me more and stayed in touch better.

She asked if I had a good dr, and about PT and whatnot. So I told her i might be getting braces (new insurance cover half) and i should get PT but really I want to use a personal trainer who helped a friend with CMT. Apparently this trainer has helper her rediscover muscles she never thought she'd feel again. hes trained to work with people with CMT. But he's pricey. So AUnt Rachel said shed pay for it. can you imagine? I dont know if she really would or if I'd feel comfortable taking but I am floored she offered.

I have so much more to think about and write. But I want to finish up cuz i'm tired. i'm glad i wrote something. i love Aunt Rachel. SHe took down both my nums before hanging up. I hope this is a start to a new relationship. And if CMT had to do it, so be it! 

Meeting at HNF

Thursday night was amazing.

It was called for 6. With some bad luck and bad planning I was boarding the A train at 5:53. I got there 6:45, dead embarassed at how late I was. It was basically in the coolest location EVAR. I love the way in the email, they write 42nd street between 7th and 8th, instead of freakin' 'WE'RE RIGHT IN THE MIDDLE OF TIMES SQUARE!' seriously, right past Madame Tussads and all that stuff is a thin office building and up I went to the 21st floor. Anyway, getting carried away here. Obviously, I was the last one there but I dont think I missed that much. From what I gathered and whispering to the girl next to me, this was a 'focus group' for a new website launching about just the disorder we all have. Anyway, it was just so awesome. There's this huge board room table with about 25 people sitting around. Different ages, different walks of life. Mainly white though. And of course i'm the only frum Jew but there was another jewish sounding name. One guy is '50 and gay'. There's an 84 year old Grandpa type. And loads and loads of beautiful New Yorkers. Seriously, put together, stylish, pretty, smart, good jobs, good personalities, etc. I was almost intimidated. And we all shared something so real that totally took away barriers. I threw in a few ideas even though i came last and was sitting all the way at the end. People would nod in agreement and I just wanted to hug them all. There was a guy there that actually performs on Broadway. And another woman who publishes a magazine. I don't know. Maybe all the losers with CMT just stayed home. but just seeing that there were all people here that had what I had and understood and had these awesome lives despite it was so encouraging.

Afterward we shmoozed with each other with an unusual ease. There was a young mother with a little girl that was just diagnosed last year. I was across the table, otherwise I totally would have hugged her or held her hand. that must be hard, finding out this stuff so late in life. Another woman talked about how she has a personal trainer that was able to give her the perfect type of excersizes and instead of her getting weaker, she actually felt she was getting stronger and regaining strength in certain muscles she never thought she'd use again. How cool. And there were peopel to ask about orthotics, and how they felt about them. Not everyone is into it for different reasons. A woman actually spent 12K on 'almost magic' orthotics and said they are under her bed, she just couldn't do it. I was kind of happy to know that being self conscious about these things are not just a frum thing ( i sort of knew that anyway). Anyway, the point is, there is no comparison to getting input from a dr., to that of getting advice from others who are in your position. I'm finding there is somewhat of a distrust and dislike of drs actually. One of the things that I mentioned that would set this website apart from others if its input and leadership comes from actual people who have what we have, not just medical profesionals.

Anyway, after it all ended, people who were interested stayed to be part of an upcoming documentary. I decided to stay as did three others. The girl who the film is about is amazing. She has it pretty bad, usually uses a scooter to get around and her hands don't work so well. But she is funny and charismatic and just such a pleasure to be around. She really was inspiring. I dont think anyone pitied her, she was too cool for that. it was kind of intense talking about the ups and downs of the disorder and somewhat healing in a crazy sort of way, just getitng it all out. It was so interesting, the whole night, everyone kept saying how they want the world to know what CMT is and all and inside i'm thinking 'no, no why?'. I do get it. They want awareness and money raised and people to know what it is, accept it and move on. but its still so new to me that this is something we'd want people to know about.

Anyway, we'll see what comes of this. I am feeling so much better about myself. Not sure what the next step is. .BTW, i've been consistnatly wearing my clunky boots and i do feel that i'm a lot more supported and less awkward.  

update on PP party

Just to update; at 8:12 PM it was me, DH and the hostess in an immaculate house and a beautifully set-up table. I get a text. Friend's sister can't make it. Yay. Text my (non-Jewish) coworker, who is supposed to pick up another women, asking if shes coming. She texts back 'sorry, no'. My heart sinks. NO ONE IS GOING TO COME!!! I text back 'why not'. A minute later I finally hear the door open. In walk my two coworkers. She is a total goofball and I told her I was about ready to kill her . In the end there was a nice small group. I think about 8 people. A couple of her friends brought kids so it made it livelier. A neigborh brought two daughters. An old neighor popped by for a little. And my one local good friend from the neighborhood came. She gets brownie points. THe cool thing is her friend is also my neighbor, one of the young ones I talked about. And her other friend was the other neighbor. So it was really nice to have them there and shmooze. The table was full and it was actually fun. THe girl who did the party was a lot of fun and the products are actually pretty cool. Not everyone ordered but some actually did so it wasn't a waste of time. All in all, a decent time. So relieved its over. I know for the future (not that im doing this again for a LONG time!) random facebook invites and flyers do not get people to these things; its nudging friends over that does.

The nice thing is I got this neighbors num, told her I wanted to have her for shabbos. she said her hubby doesnt like going to new places but they would have us along with the mutual friend couple and she texted me today inviting us. If i end up getting friendlier with neighbors because of this its worth it! THanks all for hearing me out and the chizuk and stuff...

Pampered Chef party tonight

OK, I dont know what I was thinking. I'm new here. Have exactly one close friend locally and a lot of other people that wave and smile at me. Theres a married couple without kids who we've been chummying up with and its nice but shes super busy and stuff. Anyway, she asks me to make one of these Pampered Chef parties in my house. I have no clue what it entails but I say, ok sure, let's do it. Now, its the night before and I'm petrified that no one is going to come. I've emailed and called a few people (messages really). The few local people at work all have a different thing going on or did this in the past. It never struck me how ridiculously busy frum people are. have you ever realized how many obligations we have? I dont know, I seem to have plenty of down time but everyone else has their husband going to a shiur or one runs a gmach at the time or another is going out of town next week. Anyway, a few of my non-Jewish coworkers said they'll come and I hope at least they do!!

I think I made a mistake in agreeing to do something like this so soon. I'm worried that if there's a very lousy turnout, its going to turn me off of my community even though it really shouldn't. I'm here just a few months and people are more 'home sticklers'. So I really kind of took of a bigger piece than I could chew (?) when I agreed to host a local party where you need to know people in order for them to show. Whatever. I also thought she'd be bringing people but in the end, she said her locals already attended events. I'd love 10 people but its a long shot. And maybe, some day, when i am totally popular and well known, i'll host a big party where loads of people will come and I'll look back and remember this and think 'how far we have come...'

Letter came, told boss

 So the letter came, well written besides for calling outdoor time recess. LOL. spoke to my boss. i thought i'd manage without crying but than he said a couple of things; first when I described what I had, he said 'are you able to work?'. That made me quiver a little. then he wished me 'refuah shelaima' and said they loved me and want to make sure I am accomadated as best as possible. Of course I started crying. But it was ok crying, not sobbing, just some tears and needing a tissue. whatever, it wasnt even such a big deal that i cried, the bottom line is i definitely did the right thing and was very glad I had the letter on hand to give him. he is going to speak to my dr also and asked for a copy of the letter for file, but mentioned everything was of course confidential. feeling freer by the minute. Actually sat for most of outdoor time which was really a big help. 


Meeting others with CMT

In the past few weeks, I've been networking and meeting others with CMT online. I had been part of a facebook group with it but wanted to do more so I posted this; 
could use a CMT pal to talk to...i'm feeling very isolated because no one really knows what I'm going through. but I don't want to be depressed and really want someone who has a positive approach to CMT and life and we can help each other stay focused and grounded and encouraged while still facing reality....if anyone out there thinks they could help, please friend or message me. Thanks :)

I got some cool responses of really normal, happy, down to earth people who have CMT and are just living their lives. Finally i've found blogs to read that I can connect with and through one lady, i found a couple of peopel in the tri-state area who I hope maybe to meet one day. I thought it would be depressing to be in touch with these people. When I was single, recently dumped because of my condition, i turned to a yahoo group to shmooze with otehrs. And it was very depressing. all about wheelchairs and people in pain and whatnot. Of course, people that are on support groups usually are there for support. so its going to be people who are tied down and blah about it.  But through facebook you get to see real people and their lives and CMT is just one small aspect. And let me tell you, its actually hopeful and inspiring that fellow CMTers are happy and leading full lives, in relationships, have kids, go on vacation, work, etc. I love it. Some are really talented and do things like singing and acting. I just wish the frum world could be more open minded about this type of thing. 

Anyway, theres this girl I connected with who is actually filming a documentary. She sends me this email;


PLACE: Gunderson Dettmer Stough Villeneuve Franklin & Hatchigian LLP
220 West 42nd St. 20th Floor
Offices of Dan Goldberg

TIME: 6:00 - 7:30pm.

For an opportunity to meet Bernadette and be in the film 'Bernadette,' as well as share valued input and meet others with CMT :)

Read below for more information and please register at bottom if you or anyone you know can make it. We need CMT patients.THANK YOU!!

Gulp. Should I do it? I guess I should go but be in the documentary? Might me too much but might be nice....

doctors visit

too tired to write much but short post is better than no post.

went to dr yesterday. had to wait over an hour and a half. very frustrating cuz I left work early and dh had to watch kids way longer than either of us thought. they did a bunch of strength tests on me. it was good to be able to do most of it, i just couldn't push up by my feet and toes but legs, arms and hands were all in pretty good shape. tried on a pair of orthotics. i do think it will help. I still need to figure out insurance stuff, because the MDA cant help. Dr will ask for help with another place that they give a lot of business too. Otherwise ill switch insurance in march. The handicapped parking thing is filled out, just need to give it in. i mentioned about talking to my boss about my condition and he offered to right a letter with the hospital letterhead describing what I have and what my limitations are. i thought that was very nice and hope to get it in the mail this weekend. good timing because our new playground just reopened and along with that, a note from the director reminding us that we can't just sit while we watch the kids, we need to be up and moving around. hopefully this will help.