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?

Back...

its been a while....sorry! My summer has been.....nice. I worked for most of it and thus couldnt do all that much so thats a bit of a bummer. I also dont have people here on the block that I can hang out with and chat all evening long so it wasnt anything special. In fact in a way it was a bit depressing because I know what summers CAN be if you are surrounded by friends all the time but oh well I had those days and maybe Ill have them again some time. I did swim a few times at a friends place with Shain and had a few other nice outings but it was usually just home after camp. I tried to meet some friends in the city for free concerts and stuff but the two times I made plans it rained. Boo. I also found I was tired at night and not even super interested in doing a million things.

Good thing -- the summer ended with a huge bang. The four of us went away for a week to the Jersey Shore. It was phenomenal. Hotel with mini golf, pools, beach right nearby, BBQing every night. Just awesome. We went with cousins so it was even more fun. I walked around barefoot a lot and wondered if it wuld be my last time doing so...I really need to call my Dr. and get the damn perscription and just get AFOs already. I love walking around barefoot but I said i'll give myself one more summer to enjoy the breezes on my legs and than at least TRY them! Problem is i don't really have a Dr. I went to the MDA a year ago but they claim I owe them money and i'm scared to even contact them. So just pushing it off cuz I dont know what to do and part of me doesnt want braces anyway.

Some friend's husband who is a PT asked if everything was OK with my leg. I'm so tired of hiding. I fumbled and mumbled and said something about how they are bothring me and I'm looking into getting orthotics. It was so uncomf cuz we both felt that I was hiding something and not comfortable sharing and that made him feel bad that I asked. I wish I could just say 'actually, i;m not sure if you are familiar with CMT but I actually have it'. Thats it. Just one line and goodbye. Hes a PT so he might have heard of it. No one else would have.

OK just rambling but i'm now back at work and the kiddies are both at local basement playgroups. They are both loving it and their teachers are giving glowing reports. They are happy and like to play, what more can a teacher ask for. How many more years till I get a different sort of report from a teacher?!

Hope to post more often, good to be writing again.

Nothing like comin' home

Today I woke up late (about 9ish) and it was pouring rain out. Theres something a bit cozy about being warm inside on a day you dont have to go to work and just lounging around. But I also knew that coziness would lead way to boredom and listlessness as the day went on. Unfortunately I don't really have close friends in my area - I have a lot of people I am friendly with and hope to become closer to but very few people I can crash by for hours with the kids and be totally myself. The very thought of texting one mom after another to ask if we could come play was depressing. We had also had a quiet shabbos with just our family which was definitely relaxing but I was craving family or very close friends. I called my sister who had been at my mom for shabbos (my brother and his wife were also there but tehres a limit to how many can sleep in a 3 BR city apartment so I didnt even bother asking if we could come). My sister tells me that she and her husband are going on a mini-vacation and the kids are still at my mom as is my brother and his wife. (were all very last minute). Just calling my mom and speaking to my SIL and hearing the noise in the background made the idea of driving there very tempting. I was tired and it was pouring and I'd have to drive myself and find parking which can be a 40 minute task sometime. But I decided I wanted to go and we made plans that if the rain let up we'd go somewhere, otherwise we'd just all hang out at Moms.

Its always a trip to get everyone to the car, especially in the rain. I'm constantly praying that no one is going to fall on the way down (thankfully we only have 5 steps). But amazingly we got into the car and on our way (stopped for Gas) about ten to twelve. Yak fell asleep right away but Shain had fun talking with me while the music was playing and we were driving. She even said "Bubby (Grandma) lives in the city, right". LOL! The drive was rainy but there was no traffic and I got off the Willy bridge about 12:25. Great timing, especially as it was raining and the trip can take 1.5 hours plus in traffic. I was going to call to ask someone to help get the kids so I could loook for parking but decided to try to find one myself. At this point Shain was gettnig sleepy but I kept pointing things out to her so she wouldn't fall asleep. Another amazing thing happened and as I rounded the corner of my moms apt, a parking space was just sitting there. Score! I got the stroller and kids out and we managed to get into the building and upstairs all on my own. I always feel like I desrve a medal when I maneuver kids, double stroller and bags through two doors, an elevator, hallway, etc.

Anyway, it was the best decision to come. My nieces are adorable (11, 10 and 8) and my nephews love my kids (6 and 3). the girls put on music and we all started doing aerobics and dancing. We read books, chatted about my sisters upcoming party and ate a nice lunch together. At one point my mom put on a video for the 5 youngest and the 4 adults and my big nieces played Taboo. We just laughed a ton at some of the clue and guessing going on. At the end of the day my mom put up dinner and there's nothing like eating my moms chicken soup especially on a rainy day. I love going home. its so familiar and warm and part of my childhood and past and who I am today. And of course there's my mom and other family memebrs who love me just the way I am if they are there as well. I hope that one day I'll feel similarly about my current neighbrhood but its good to know I can throw the kids in the car and drive less than an hour to get there whenever I want. I hope to spend a few days there on my day off.

I left mom about 7 and texted DH that i'm on my way. Althogh he was hoping to be tehre for me, he had an emergency job that he had to take care of. I arrived home with two sleeping children and no sign of DH's car in the driveway. Not OK. Usually i'm exhausted when I take the kids somewhere on Sunday and knowing he's there waiting with his big strong arms to carry everything in is such a relief. Now its just me and kids are fast asleep. At least the rain had tapered off. What am I supposed to do. Carry each sleeping 30+ pound kid inside and upstairs to their bedrooms? Help. It hit me that if I was ever, God forbid, a single mom i'd have to live only in an apartment or a ranch style house with no stairs.

There's a time and place that I tell my myself 'CMT, you need to bug off. I can do this even if its a little overwhelming. Shrug off the nerves and self-pity and do what you need to do. Your kids are relying on you and you can't let some weak muscle nerve endings or whatever stop you from doing what needs to get done.' I then backed the car right onto the pathway to my home as far as it could go. I ran in, put down diaper bag, pocket book and put a stopper in the door. And one by one, I gently opened the car seats and carried them inside. Yay SuperMama! Don't worry I didnt even entertain the though of carrying them to their rooms. I placed each one of them on one of our comfy couches and gave them their blankies. Shain woke up as she was being transferred and let out a whimper but Yak barely moved. When they were comfy, I went back out and backed the car out and parked it.

So thats where my babies are right now snugly asleep on the couch, waiting for Daddy to bring them up. I am gonig to go down in a minute and put a diaper on Shain, hopefully its not too late....I feel all warm and mushy about my day and hopeful that i'm creating memoreis for my children that will stay with them for a lifetime. Good night :)

Yak and Shain

So Yak's PT wants him to wear shoes all the time with insoles. :(. I just bought cute sandals at a real shoe place. But his feet are turning. Joy oh joy. He was my early mover and walker and I was hopeful his feet would be spared but alas it looks like its not the case. I did notice his feet are actually turning in, not out like mine do. But anyway I'm trying to follow her isntructions. i'm a very free-spirited barefoot run around the place person so I dont know if I can have him wearing them all day until he goes to bed but I'm trying to make sure they are on most of the time. I hope it helps, she thinks it can. I'm so not at the place of runnign to the MDA to see if they have CMT and need orthotics but I hope that my kids won't miss out becasue of that. I will follow my PT's recommendations seriously and I'm guessing both kids will be getting PT (and possibly OT) for the next buncha years. The good news is the PT is very happy with how Shain's progress is and she's been doing great with stairs and running. She's such a little free spirit like me and her status quo way of moving around is merrily skipping. I just pray she doesnt fall when shes doing that on the pavement and much more often than not she doesn't. But it does make both our spirits temporarily plummet when she goes kaboom when all she wanted was to be a happy little girl.

BTW, Yak also started with speech and special instruction because he's almost 2 1/2 and doesnt talk that much. He's shown a lot of improvement since he started and also since he started a little day camp with 6 other little 2 year olds. He's so much happier than when he just went to a babysitter - here he swims and colors and he really enjoys it! Plus my friend runs it so that is great. I'm not super concerned because Shain was also delayed and now she doesnt stop blabbing and has a super memory. My kids are adorable btw. I can't stop kissing them. Shain's best friend came for the whole weekend (he's a boy) and they played beautifully together. They built a whole city with our Legos and sang together in a band. Poor Yak was a little left out but he didnt seem to mind.

Have a great week!

The past few Friday nights have worked out really well. DH has been pretty helpful and I've been more upbeat and smiley when sitting at the table.

Friday night

So I have a sort-of-dilemma.

Every Friday night - Saturday night is our Sabbath, Shabbat, Shabbos whatever you want to call it. Its a day of rest and and we basically refrain from all electronic stuff and work and we hang out with family, eat, read, pray and SLEEP! So for those not familiar with what Shabbos entails, imagine a small Thanksgiving meal every Friday night and Saturday afternoon. There's lots to prepare beforehand, including cooking 5-course meals, cleaning the home, bathing everyone, preparing for guests which often come, etc. Its fun and very enjoyable, but yes, hard work!

So here's the dilemma. Lately, or I should say, almost always, come Friday eve, everything is finally ready and I light my candles and just collapse. The whole week of working and taking care of kids coupled with the extra prep work on Friday finally catches up and knowing that i'm finally at my deadline puts me into a very tired-lazy-just-wanna-sit-on-my-couch-with-my-feet-up mood. But I usually dont have much time to relax cuz I still have to take care of kids and set the table up so when my husband comes home from synagogue, all is ready. And basically, the whole meal, I'm somewhat 'blah'. I'll eat and chat and laugh but I'm so not in the mood of serving a big meal. Taking care of the kids and putting them in bed, constantly getting up and down to serve and clear off and standing on my feet to serve things such as soup and chicken feel like major labor to get through. Plus, i'm usually relaxing and surfing at this time of night so it's physically hard all around. But the dilemma is not just how to make this easier. Here it goes:

My wonderful husband has seen that Friday nights are hard for me and it bothers him. He wants me to be energetic and rested and happy and I totally get why. So he's basically taken over all cooking and cleaning the past number of weeks, which is amazing. I barely have to do anything in that department. Great. So whats the issue? The issue is...come Friday night and I'm still tired... even if I didnt do any of the cooking or cleaning. Its not like i have my feet up all Friday, even without cooking/cleaning, I'm still donig my share of getting things ready, bathing the kids - including washing hair, always fun and in general going up and down the stairs more often than usual. Truth is, I think that many people are tired Friday night even if they dont have kids or work full time. But I'm sure my CMT adds to the fatigue. So it frustrates my husband that even with him taking so much of my shoulders, I'm still not alive and energetic. And I dont know what to do about it.

Just as an aside - DH is not into me making CMT excuses. IN general this is actually a very good thing because I don't WANT to be someone who lazes around and does nothing because of a neurolgical disorder. I want to accomplish whatever I can and push myself to the limit. But what is my limit? When I try to explain that I get fatigued easier than many others, he claims I am 'pulling the CMT card'. Might be true. Prob not completely true. I probably could get energized if I was giong to - say - an American Idol show. But even then I tire easily.

Maybe I should relax more on Friday - like sleep instead of surfing when I come home from work. Maybe its a simple soloution like using a better chair at the meal which I can get up and down from easier. Maybe I should drink a coffee right before lighting candles. Or maybe I should just tell him that I might not be energetic no matter what I or he does and he should try to accept that about me.

Thoughts? Advice?

Its been a while...

Things have been ridiculously busy since June.

I'm a special ed preschool teacher so June means graduation, quarterlies, reports, end of year projects, etc. i also make the slideshow for the graduation (of 60+ kids). The first two years i worked a guy came and got paid for doing it. I turned to my boss after the second year and said 'I can do this'. So they gave me the job, and without tooting my horn, I did a better job for less money.

OK, Esther, we get why June was busy. But now it's mid-July. whats your excuse? So my director was leaving after 18 years and nothing was being done. A bunch of us teachers came together and decided to Just. Do. It. And i offered to make a video. Not the easy, nerdy, 'pics with music' slideshow but a full movie with interviews, pics, video clips, words, sound effects, etc. And i had never done this before. But DH got me a new gorgeous computer and the Cyberlink Director software and off I went. There were a lot of politics with what i could and couldnt' include and I spent hours and hours on it. But come the night of the dinner, it came out stunning. Everyone was crying. I ended the video with her favorite song. I stuck in kids singing along with a backround song. It was gorgeous. I wish I could upload it.

I love being able to do amazing things. No one else at work would have even offered this or had the creativity, willpower, brains or energy to video tape people, put everything together and edit it the way I could. I love the fact that I did something awesome despite my CMT (and sitting with my hand on the mouse can hurt after a while!). So thats done and i'm now recovering and slowly getting back to life.

In other CMT news, I love love love my handicapped licence. Its changing how I feel about shopping in big places. I did get my first 'why are you in a handicapped spot'. Not because they didnt believe me but because i hadnt hung the little sign up yet. It was a little embarrassing to have to answer to her that 'yes, I am handicappaed' and i felt a need to walk even clumsier when I lfet but it was fine. i dealt and moved on.

Also, awesome Bernadette has put together another trailer for her upcoming video. she asked people to send in videos of themselves but I already was in it so I dont think its necessary. A lot of people are posting stuff on the wall and spreading awareness, and one CMT friend encouraged me to do the same.

I wish I could. I want to. I want to shout it from the rooftops and let the world know that yes, I do have something a little crappy and somewhat limiting but it doesnt take away from who I am. Let people know why I'm sometimes tired and walk a little funny.

But I would get pity and I would get strange eyebrows raised and my sister would kill me because it puts a stigma on our family. Is it true that the more open you are about things, the less scary it is? I dont know. I dont know what to do. :(

Clumsiness and kids

Poor baby. He falls a lot. Has three scrapes on his knees and legs. Sound familiar? I really thought he would be my CMT-less kid who started walking right on time and wouldn't fall. I'm so sad that hes not. Who knows, maybe hes ok. but I look at him and feel guilty. S is also clumsier than most kids her age, but shes one year older than more steady. Any time i see her galloping on the cement, i cringe and pray that she doesnt fall. ANd when she crouches down and keeps the stance (something I cannot do), i secretly cheer.

Its ok. Y cries and than picks himself up. He doesnt seem to mind his scrapes. Hes really a baby in a lot of ways. He barely talks and always wants to be held. And hes over 2. Truthfully, I dont mind him being a baby. The two kids are so close in age that i dont mind having a kid and a baby. But i do want him to run around more and not be afraid of falling.

I used to be clumsy. i never understood why, in dance class, i couldn't get up without pushing the floor. I definitely tripped more than my friends but I didnt even realize it was connected to this weird disease that my uncle and brother have and we sort of have. Its so weird how little my dad was affected. i wish he was alive so i could talk to him and see his feet (and for other reasons :) ). I also had my share of dislocated knees (my whole family had them). But i didnt really feel like CMT affected me until I started to date and realized what a big deal it was.

I knew I might be passing on my CMT to kids. I'm ok with it. I mean obviously i kind of have to be. There is PGD but its not for us. SOmetimes I wonder how my DH is so OK with the possibility of passing CMT down. I love him for it. Plenty of guys (and girls) would not want it. But he kinda sees the big picture of whats important and that i am who I am despite (maybe because) of it, so no biggie. I am kinda torn of feeling like CMT is not really a big deal, just some minor inconvenience that thankfully doesnt affect the brain or lifespan and you can have a pretty normal life with it, good job, family, friends, etc. Than sometimes i'm like 'this is awful. it cripples you. youre so afflicted. Its the worst thing EVAR!'

I have a kid in my class thats so athletic and graceful. SOmetimes i dream of having a kid like that. who is everything i, and all my family members, aren't. My cousins are pretty athletic even though their fathers father had it (but not their father). Its not that important. I just would love for them to not be affected, or if affected, have it so its not a huge part of their lives. i hope by the time my kids are grown, there is a cure or a very easy way to make sure its not passed on.

Blah

Feeling a little blah today. Dad's yahrtzeit (death anniversary) is today (last night). Its strange, i know i'm suppposed to feel something. And I do feel strange. But i'm not just flat out sad. more like blah. I feel sadness at other random times. So we had a dinner last night in his memory. My brother always learns a book in Talmud in his memory and we celebrate its completion at the time of my father's yahrtzeit. 10 men need to be there so a couple of random uncles and cousins come and its so nice but it also becomes less intimate. We're not that close to a bunch of them and theres a lot of dead small talk. I feel like I can't really be myself. Especially when one of them, who is a wonderful speaker, gives a whole speech about how wonderful my dad was and all and i'm like 'you weren't even that close?!' ( i think this, dont say it). Next year i want it in my houes. Just my sibs and his sibs. i'll invite extra men when its time to do the actual thing, for deser. and lets all be real and remember and laugh and cry and be vulnerable. Not talk about how delicoius the roast is or how my new house is doing and 'why is this dragging, i have work tomorrow'.

Its also annoying, DH and I finally had an 'evening out' with a babysitter and and i feel like we fought a lot in the car. All about stupidities. I need a new laptop but we dont have money and its the second laptop i broke. i'm not as productive as i am when i have a laptop cuz then i watch things while I work and now I cant. DH doesnt like that i have a hard time working without entertainment. i dont like it either frankly but i dont know i dont think its that awful either. I think if i had more shelves and closet space i'd be neater, he doesn't think so.

I'm so tired of not having money for all the things I want to do. i'm tired of feeling messy and unorganized and irresponsible and blah about things. there are so many things i want to do and am just not getting done. the whole brace thing. not making new appointments for me and my bro because i dont have his insurance. fixing up things in the house and out of the house. printing my freakin' 1000 pics off the computer and putting them in an album. im so not a doer. I wish i was. am i lazy or just not ambitious? can i blame CMT for things? not really. Some CMTers are making videos or running companies. I'm confused about a bunch of things in life and i wish I had more close friends here I can talk with and connect with (not just online). i hate walking aroudn work like its a normal day and not beign able to share or feel that others understands make me feel so alone. I just spoke ot someone at work and feel a little better.

Anyway, this is for you Dear Daddy. I hope you're still there watching over us and can see that we still miss and love you.....I lit a candle last night. Mommy made a CD of the funeral. DH wanted to put it onin the car last night. his car doesnt have a CD player (its that old). im glad. i want to hear it all by myself and react however i want to react without any other adults around. I think i'm going to pick up the kids and drive to the cemetary and listen to it. i hope the kids fall asleep. i want to talk to Daddy and God in English, not pray in Hebrew like I usually do. its been raining on and off all week. i hope it rains. i hope i cry. i could use a good cry.

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!!

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 :)