Passover

Disclaimer: I started typing this over a week ago and than my laptop crashed. I was watching something while doign laundry (god forbid i should work without simultaneously being entertained) and apparently i pulled the wire and the whole thing came crashing down. DH just fixed it a month ago and i feel awful. i can blame it on CMT or not but i definitely am not as responsible as id like to be. ANyway, im just explaining why I'm a little behind but wanted to finish this post already. USA!!! /disclaimer

Pesach / Passover was super. I got a nice 10 day break from work and got to spend quality holiday time with my husband, kids, mom, siblings, nieces and nephews (theres gotta be a word for both), cousins, friends, etc. I was at my mom for almost all of it and in brooklyn for the weekend in the middle, leaving home from Monday - late last night. we also got to do fun Jewish things like have the Seder and eat a lot of matza and not much else ;) (just kidding my mom is a great cook). I love how my kids get a long with their cousins and my daughter said the Ma Nishtana and I was super proud.

This year we had a few days of "Chol Hamoed" but only one full day. Its basically a time for Orthodox Jews to go and spend time doing all sorts of fun things. Bigger kids and teenagers opt for theme parks and concerts, moms of little kids like me like to do more lower key things with family. For anyone that knows me in real life, I love free and I love Manhattan and being at my mom was a perfect way to do both. One day we got together with a whole bunch of married cousins and met in Central Park where we just played ball, belts, and hung out (I sat and watched ). Fantastic outing that was completely free (besides metrocard). Friday my nieces wanted to take the Tram (cable car) to Roosevelt Field so we took the city bus there and back. Again, a fun and cheap and different outing. Sunday I was superproud. We went to the staten island ferry (free boat ride from Downtown Manhattan) and ambitiously we decided to walk. i thought it was where the South STreet seaport was but its actually further. Checking afterward it was two miles!! And we walked back too! I think i overdid it as my feet were hurting after (even with several breaks). But still im so glad i did it. I love doing things that prove that I can do just about whatever i want. And here where I live, nobody walks anywhwere. i miss walking although i also like being able to drive and have parking and stuff. Manhattan is so interesting that its almost easy to keep walking. My BIL and niece actually walked home from Central Park too (almost 5 miles?).

Otherwise it was a pretty nice holiday with the typical ups and downs. I dropped a dish with potatoes which was very blah for me. Its one thing to know that my feet are affected by CMT but annoying if my hands arent performing to par. I just have to be more cognizant and take a plate under a dish or be more aware of when im doing things.

lots to do, hope to post more soon (from DHs office computer, trying to see if that works for me instead of always breaking laptops).

Here's my walk:

On Sickness

My Aunt Hannah was just diagnosed with ALS, otherwise known as Lou Gehrig's Disease. Its very sad. My mother is from a large family of nine. Her father died young, also of ALS. I never realized that ALS is genetic. Now mom tells me her cousin Lucille also died of ALS. HELP!! This is scary! All I need, CMT and ALS. THat should be a super fun combo. ANyway, of the 9, only a few of them got married and have kids. Her second sister, Lea died a few years back, and had alzheimers before she went. Now another sister Ida also has beginning onset of Alzheimer's. For now she moved into my mom's small apartment until they can figure out what to do next. And than Hannah found out she has ALS. They are not that old! I feel like i'm still a little kid....They are in their 60s.

I asked my mom 'what did you say when she told you' What do you say when someone tells you they have a debilitating, progressive and fatal disease? She basically said 'oh no. Is there anyting i can do, etc etc'. There is a drug that supposedly slows it but still its such a depressing thing to get hit with. It got me thinking a little -- compared to MS, ALS and a score of other diseases, CMT is a walk in the park. Sure its challenging. But its not life threatening and most people that i know who have it are still living long, full lives despite it. I really go back and forth about this issue a lot.

Is CMT an awful annoying disease that might also dibillitate and degenerate my children also? Sometimes I feel like that and thats kinda what the research makes it sound like at times. But for me, most of the time, its just an annoying part of my life that is on the back burner, its like the fact that to drive thorugh my neighborhood i have to pass through the ghetto....I dont like it and I do have to work harder to socialize, but it doesnt really affect my life so much.

I think this is one of the reasons I am so against doing things that label me as 'disabled'. That would almost be like admitting that this is a pretty bad disease, one that actually is disabling me. I dont want to be disabled. I know if I was more confident about myself and my body this wouldnt bother me as much but im scared to go there because I dont want it to be any worse than it is.

Theres a comment going around social networking where CMTers are posting that goes like this:

• YOU DON'T LOOK SICK! No, I don't. It's hard to explain to someone when they have no clue. It's a daily struggle feeling sick on the inside while you look fine on the outside. Please put this as your status for at least 1 hour if you or someone you know has an invisible illness (Anxiety, Bi-Polar, PTSD, LUPUS, FIBROMYALGIA, Crohns, Diabetes, Arthritis, chronic back pain, Epilepsy, MS, Depression, or for Me, CMT). ♥

So I get why this commetn is good. But I really don't agree with it. I personally LOVE the fact that my sickness is not obvious. How wonderful it is to be normal and at least not stand out the second someone sees you. I'm sure people with obvious diseases would be thrilled with a chance to just 'fit in', which thankfully I've been doing for my whole life. I also am not the hugest believer of spreading the fact that I have CMT to the whole world for this reason. Let me blog, vent when I need to, and go on with living for 90% of the time. Maybe others have it worse but I really feel sorry for those who are so debilitated or affected by any disease that it covers the forefront of their mind most of the time. There are those that blame anything they have, from memory loss to the flu to a fight with a spouse on CMT. And what a shame that is. Lets let CMT be what it is. Get the suppport we need. But dont let it take over our lives. I remember as a single girl signign up for a yahoo group and running the he!! away when I realized it was non stop complaining and groaning. i dont need that. I do love connecting with CMTers on FB and the like cuz i get to see their awesome sides. Most work, are in relationships, have full lives despite it which I love following.

Now all that being said, there are some times I do feel all sorry for myself for this awful disease that I didnt ask for. Why me? Why do things have to be so difficult and drainign at time. My husband, bless him, does not think CMT is a big deal. He generally does not pity me or wait on me hand and foot and sometimes it bugs me. But in reality its the best thing in the world becaues it reminds me that its just an annoying thing, not someting I need to blame for things or not do things for. If i really allowed it, CMT could give me an excuse not to work, not to have kids, not to clean, travel, walk, exercise, go otu with friends, etc. And I do it all. And i think i'm pretty darn good at most of it too. I cant judge others who choose not too because CMT really does affect everyone differently. And I should never come to a place that I really cant do things because of it. But for now, its really good that DH doesnt coddle me because it helps me to push myself. When I do really need his help, he usually is there for me. But attittude in general is so huge in cases like this.

OK, that was a lot of jumbling and mish mash and stuff. Whoever prays, please keep my aunts Hebrew name in mind that her ALS should progress as slowly and painlessly as possible and that a cure should be discovered soon! (While you're at it, pray for a cure for CMT. And CF. And everything else...). Her name is Channah Henya bas (daughter of) Shaindel

Thanks!!

I hate Shopping!

So last night, a friend of mine was going to the mall. I need stuff for Pesach (Passover) so i told her i'd come along. This is one of my friends who kinda knows I have some feet issues but doesn't get what it's really all about. Anyway, we leave at 7:30 and her neighbor is there too. Fine, we get to mall. I'm exhausted. We go into Macy's. I'm telling you, I hate shopping. And I really hate shopping with other women. I know its supposed to be more fun but its JUST NOT. It always starts the same way. I look around and it looks like there's tons of stuff. I get all excited, go through the racks. Very little is my size. I take what I can to the dressing room. It looks awful. I always wear the wrong bra when I shop. Anyway, I'm in the dressing room and the other two gals are complaining how fat they've gotten (I can't believe I am a size 8!). Let me tell you, I am not obese or fat but i'm definitely heavier than I should be and heavier than I've ever been. I'm a size L or 14 and a couple of years back I was M and 10-12. I could stand to lose about 30 lbs and I do hope to lose the weight but its not happening right now. But it just ANNOYS me when skinny people complain they are fat.

So anyway, I just want to talk more about why I hate shopping. Its draining. Its probably going to be an average of 2 hours. On my feet. Very hard for CMTers. I was wearing crocs which give no support. And its at the end of a long day. The worst type of movement for CMTers is no movement or sluggish and slow movement. I dont mind walking but it has to be brisk and the best is when I'm pushing the baby stroller (AKA my walker). At least MACYs had a nice seat in the fitting room, the WORST is when they don't. SO i'm trying things on. Feet are hurting. Dont like the way anything looks. When you try things on you face what your body really looks like and I'm not crazy about it. Plus the other two were irritating me. And usually I will go back and forth to the dressing room several times and each time i'm more drained. Coats annoying me. Its annoying to keep redressing and Im tempted to go back out in my underwear. By the time I'm ready to run out, I just grab something. ANYTHING. so long as the awful shopping experience wasnt a total waste. More often than not, that last-ditch item is not something I end up really wearing.

WHich brings me to the next reason I hate shopping - I hate spending money. Theres like something wrong with me. We did just buy a house and i'm trying to keep expenses low but i just hate shelling out hard earned money on something htat I might or might not like. Dont get me wrong, I love nice new things that look good on me and if I wear it its worth the price. But I hate spending on question marks and I hate spending full price. So than I'm fiddling through the clearance rack which means more time on my poor, unsupportive feet. And if I realize 'darn, MACYs had a coupon in the paper but I didnt bring it', i just wont buy the stuff knowing I could have saved $20.

Anyway, I ended up separating from the girls and going to H&M. Its much smaller there which is better too. I hate HUGE department stores where you don't know where to look first (and you walk and stand forever). I got a skirt and a couple of tops for Pesach and have to try it on for DH, he is the final say. He says we should go togehter. We went once on a day off in the fall and it was actually fun! He knows my feet issues. So we spend half hour tops. Grab a bunch of stuff. He cracks jokes the whole time. And if I need a replacement piece, he gets it. Gives me his opinions. And we pay and off we go. Best part? He hold my hand when we walk which makes everything oh so much easier (and might I add a little romantic ;) ).

Anyway I also bought a coupel of things for the kids. Love buying them clothing especially my daughter! And H&M have adorable jumpers for $4.95. Heaven!

The night ended with me waiting for the two girls. I sat in a shoe place at the exit of the mall feeling sorry for myself that some things were so hard for me. The high heeled shoes which I will never even try on seemed to be teasing me. I rarely even think about things like this but I do wish that I even had the option to try heels. Anyway, being that i'm not into fashion and DH is my height, I guess its OK, but I did spend a good few minutes feelings sorry for myself that so much of clothing and shoes is off limits for me.

Some people love shopping, its thereputic for them. Not me, no way. I guess its good for our wallet....

To Brace or Not to Brace

So one of the reasons for starting this blog -- I am seriously considering myself orthotics, otherwise known as AFOs, ankle-foot-orthotics, braces, or clunky aparatuses that make you walk better. Many people with CMT have them because our feet turn, there is a foot drop and a high arch along with hammered toes. This makes for walking and climbing and other stuff hard. So many opt for orthotics that help keep the feet steady and fill in the space where the arch and turned foot is. My brother always had AFOs for as long as I remember. In general, it was him that really had the disease while the rest of us just sort of had it (all 3 siblings got the disease, yay!). Interesstingly, my father who passed it to us was always strong like an ox and I never remember him having any issues. Its like he barely had the disease at all. BTW, my father passed away almost 8 years ago (wow) from cancer. Still miss him :(. But I digress. So AFOs are something that many CMTers use and for the most part it helps them get through the day better.

Why now ?

This is a good question. I feel like i'm 30 years old, have everything I really need in life right now and can maybe finally get past looking strange or whatever. I think i have the confidence and support group, but more on that later. I also do feel like my feet have gotten a little worse in the past few years (its a progressive disease and no one knows how much or quickly it will progress. the hope is it will be slow and barely noticeable). My feet have turned and its difficult for me to walk far, stand in one place, climb stairs, etc. I'm hoping that orthotics might help with this. Finally, now that I have two little ones, I am constantly busy and on my feet, more than I've ever been in my life. Did I mention my house has 4 floors (well this includes the attic and basement, but still!) So I want to make sure my feet are as protected and preserved as possible so I can use them as long as possible (hopefully my whole life). I decided around a year ago this time to finally get my act together and get to a doctor. I hadn't been to one in years and years. I went to the MDA clinic and went this past October too. Of course they recommended orthotics. I dont know if i'm going to go back in the spring as theres really not much anyone can do.

Orthotics are not cheap and there is a big range of them. The ones I'd probably be getting are about $500-1000 a pair. There are really cool and awesome ones that are crazy expensive and not even everyone likes them. But the interesting thing is my old insurnace didn't cover them at all. Since I am on the fence about them, i pushed it off. This past March we switched to an insurance that covers half. And a PT friend of mine said he knows a guy who might be able to help me financially because he's a freind and gives him a lot of business. So i decided to at least talk to him and see what he said.

Why Not?

OK, so i have someone who can work with me financially and listed the reasons why i'm interested....so whats the problem? Sigh. I just dont know. Look, I'd be lying if I said there wasn't the mental factor. Its a big deal to slap braces on and basically singles you out as disabled. I so don't want to be disbaled. But I know its all in the head. When I admitted this to an OT and the MDA she patronizingly smiled and said 'Not disabled, DIFFERNTLY abled.' How sweet nice lady who has no clue what i'm going through. You officially changed how I feel about the whole orthotics thing. Theres somethign so comforting about being normal and regular and not sticking out. Braces would change that. I dread meeting new people or neighbors or potentail bosses and having them look at those things on my feet first. i guess I can wear long skirts and leggings when its cold out. But no more short skirts ever? And its not something that really can be hidden or shoould be hidden if I decide to wear them. Right now I seem like any regualr person and even some of my friends have no clue that I have issues, they just think I have an interesting walk. But honestly, if I knew that wearing orthotics would only be a positive and good move, I'd get over myself and do it. I'm all about being open and doing whats right and trying hard not to care about what others think. But I'm worried that they may do harm as well as good. That i'd come to rely on it, need it all day (one friend only takes them off to shower or sleep). Not everyone does but she says they really help her so why wouldn't she wear them all the time. Maybe its a good thing? And they seem so cumbersome and heavy. And what if my muscles deteriorate more because I have this aid? I like walking briskly and lightly and could I do that with orthotics? Plus my job relies on me getting up and sitting down and sitting on the floor which would probably be more difficult if I were wearing big clunky things on my feet. I dont know. I just dont know. i guess it cant hurt to get it and try it out. But part of me is like 'waht do you need this for, just continue life as is'. Its not like i'm falling all over the place or cant move. I'm getting by. Its just hard and sometimes draining. I would love for things to be physically easier. Woudl orthotics even help with that?

-Confused

Welcome!

Hi. I'm taking a brave step and putting this out in the open. I don't know how much I will share with who but I’m tired of keeping it all in. I’d like to thank Michele and Nicole for inspiring me to blog about this part of my life. It’s always been so private – and private means dark and bad and secretive. Somehow when you take it out in the open – and you can laugh and talk about, it just becomes another part of your life and not that bad. I don’t think I’m ready to tell the world now, especially because my whole family still wants to keep this under the wraps (my sister would faint if she saw this). But I don’t think she’ll ever see it. Anyway for now I’m sharing with people I am comfortable with and I trust and we’ll see what ends up happening. For now, I ask that you keep this somewhat private and not share the info I put down with just anyone.

So who am I?

Well I’m a Contemporary Mom of Two, duh! I think that means I’m cool and hip and a mom of two. I tried figuring out a nice acronym for CMT and thought about cool or challenged or crazy or charismatic. But I like contemporary, it works. And the mom part is a big part of who I am. And two is as many kids I have plus if/when I have one more, T can still work J. So I have a 3 year old daughter S and a 2 year old son Y and they are the light of my lives. They are gorgeous (though they both look like their dad) and exhausting and fun and challenging and so full of personality and love. I am so grateful that I have them in my life.

More about me:

So I’m 30 year old (contemporary) mom of two. I am married to a great husband and father, A, who I’m sure will make it to the blog here and there. I got married almost 5 years ago and life has been better and better since that wonderful day. This past summer, we bought our dream home in one of the neighborhoods in Queens. Still getting used to the area and home ownership in general but I think it’s the best move for our family and our future. I grew up in Manhattan and miss city and apartment life at times. I still feel like I’m a city girl – and I go back whenever I can! Anyway, life is really pretty awesome right about now. I have my dream man, dream home, adorable son and daughter. I’m surrounded by family and friends and have a good job that I enjoy (Special Ed Preschool Teacher). So for the most part I feel very blessed and lucky.

One of the not so awesome parts of my life is the fact that I have Charcot-Marie-Tooth which has got to be the dumbest named disease ever, no offense to the three brillant doctors who discovered it. I’m not going to labor into what it is, if you want to know, you can google it (although its not as bad as they make it sound). But basically it’s a neurological disorder that affects the extremities; hands, arms, legs, feet. It makes them weaker and it makes some everyday things like walking, climibing stairs, buttoning things, etc more difficult. I'm more prone to falling and I tire somewhat easily, Its also hereditary which means it can be passed down to a child. Which isn't such a fun thing to think about. I try to keep positive, use a lot of humor and surround myself with loving and positive people. And its helped a ton to meet real life folks with CMT (both online and in person) because they are really all so awesome, down to earth, in stable relationships, have jobs, positive, busy with life, etc. Recently some new developments have gotten me thinking which is what prompted this blog (hope to share it in upcoming posts)

Anyway, to wrap it all up, I couldn't fully describe myself without mentioning my religion. I'm an Orthodox Jew which means I take religion kinda seriously. Besides for believing and connecting with God and all that, I do a lot of interesting things like only eat Kosher, take a break from -- well everything basically -- every Fri night and Saturday and think about Israel often. It also makes me somewhat unique in the CMT world as I have yet to meet a religious Jew who has CMT (besides for family). I feel somewhat alone in certain ways because the folks in my community don't really get my CMT issues but my CMT friends also don't really understand the challenges that face me as a religious Jew. Both culturally and for religious purposes, there are challenges that are uniquely mine. For example, I don't wear pants (unless its under a skirt), which makes it harder to hide braces or whatnot. I can't attend the local support group because they are always on Saturday (technically, i could walk the 2.5 miles from my moms place but it would be kinda ironic...). I guess the biggest difference would be culturally, we're about 3 decades behind on openness and transparency. Things are better than they used to be but folks are very hush hush about issues. Especially if it can lead to difficulties in 'shidduchim' which is how many in my community meet and marry (think blind dates with a lot of background checking). I and my sister both dealt with rejection when dating; and it was from several guys in my case. I was so jealous of all the CMTers who just tell their boyfriend/girlfriend and no big deal. Because in my culture it is somewhat of a big deal...thankfully A and I met and tossed all the silly rules out the window and I know he is a keeper. But it makes the whole issue of being open and sharing somewhat difficult. Especially if other family members don't want to share.

But anyway, i'm a firm believer that we, as humans, generally share a lot more in common than we differ from one another. We all have hearts, feelings, emotions, thoughts and fears and arms and feet (whether they work to full capacity or not ;) ). But feel free to ask any Q if you don't understand something.

I also want to warn you i am NOT a consistent blogger. I don't like typing though i do love to talk and share and communicate. Also sometimes i write very long, other times short and choppy and I often don't reread before hitting publish. If any of these things offend you, RUN (or if you have CMT just walk quickly).

Here it goes :)