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.

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