Thursday, October 21, 2010

The Long Break

The dearth of posts here over the last two months has not necessarily been by design so much as imposed. I knew the Fall would be busy - I just had no idea how busy. Doctor's appointments for the Boy, the Girl and myself have been ongoing and the accompanying tests involving needles and urine cups and electrical leads and eye dilators and contrast dyes and giant scanning devices and healthcare professionals (both the sympathetic, informed variety, as well as the idiotic and disinterested type) have seemed endless. And we aren't done yet.

Keeping a household running with three young kids is trouble enough, but add appointments out the wazoo and the whole house of cards comes tumbling down. Add to that a little viral bug that had the house upchucking and a PC that finally breathed its last and needed to be replaced, well, the blog got the short shrift. Most of my family updates have been reserved for short bursts on Facebook (it's not bad for that.)

I wish I had something to post re the Ehlers diagnosis but we have yet to finish all the appointments and collate the data. The Boy and Girl have been given a thumbs up from the cardiologist and have no heart issues... yet (they'll get echocardiograms once a year till they're 18 since the problems usually develop in the teens.) My eyes are fine - at least medically - and I'm cleared there until next year.

I'll try to be more vigilant in posting especially as more results show up, but bear with us - this is taking a while.


Anonymous said...

I'm greatful the break wasn't an eternity.

ladaisi said...

Love your blog header! Great photograph. You have a wonderful style of writing.

- Lauren

Eric said...

I rarely do this. Your blog came up on a search regarding EDS, and after reading 3 articles about you and your children, I wanted to say hi. I'm 29, and was diagnosed when I was about 8 after I broke my wrist and it wouldn't heal despite 2 cast treatments. When I fell again and I had the same issues with my other wrist, we started seeing a specialist.

You have my best wishes with yourself and your children. I've always been weak, and my mother was a nurse, so growing up I was kept out of all sports and only did the requisite to get through school. About a year ago, I started feeling really weak for my age and unhealthy, so I started working out.

I'm now a lot stronger, and feel better than I have my whole life. I know I'm in the minority, but I really would just wish that any parent be protective of their children with EDS... but at the same time, do what you can do encourage healthy fitness. I basically lived in a bubble growing up, until I was in my 20s, and while God Bless my mother, I'm really thankful I've started taking my muscles more seriously. Strengthening the muscles has actually helped my joint aches considerably.

The key is low weight, more reps, with special care on the kind of cardio you do. Low impact is the key. Swimming is great.

One caveat-- I have had to do special exercises outside of my physical trainer workouts, per my trainer. I do a lot of rubber band workouts, attaching bands to doors or poles, and working on joint movements. I've noticed that the weird thing about the kind of EDS I have is not how fragile my joints are, but that the weirdest muscles are under-developed. My wrists being under-developed makes sense. But also something called the Teras Minor (the muscle that is responsible for how your shoulder joint rotates to the side). It's so underdeveloped that it might as well not be there. So I have to do some band stretching to strengthen that muscle. But I do find that as long as you don't overdo the weight too quickly in your progression, surrounding these weak joints with stronger muscles really helps.

In any case, this syndrome has really kind of left me feeling like a strange isolated mutant most of my life. I'm worried about how I'll be when I get older. I know that a wheelchair is probably in my future. I dunno what the 30s and 40s hold for me and that scares me sometimes. My wife and I want to have children, and I'm worried about what I'll bring on my child's life.

Just stay strong, I guess. I wish you the very best. The news of an EDS diagnosis can be shocking and really bring on fear. I just think that in the end, maybe we should be really thankful that there are worse prognosis' that we could have received.

Much love.