Ehlers-Danlos mama trying not to twist things up *too* much!

Wednesday, September 29, 2010

Pre-Op ::ANXIETY::

Surgery tomorrow. The overly friendly caller informed me that I should arrive at the hospital at 6 am, having had nothing to eat or drink after midnight. Bring nothing valuable.

I've been through this many, many times. I've been through this exact surgery before, save the iliac crest harvesting.

Still, I am a big ball of anxiety. My heart is racing, my thoughts are jumbled, I'm close to tears.

I've been looking forward to this surgery since the day, months ago, when I found out what was causing the pain this time--and what would end it. (Isn't this supposed to be the dream of chronic pain sufferers--something to end it?)

Tonight, even though my shoulder seems intent on reminding me why I need this surgery, I can't get beyond the anxiety.

I had hopes of getting some cleaning done, packing my stuff, relaxing with some Kung-Pao tofu.

Nope. I just want to sleep and get that much closer to 8 am, when I'll be comfortably numb.

Tuesday, September 28, 2010

Wheels for One of Us

After many straight days of migraine, I finally woke up headache-free this morning. Score!!

Puggles' wheelchair was delivered this morning--it's adorable. Odd description of a wheelchair? Perhaps, but please remember this is the wheelchair of my 2 year old daughter. Even the name is cute: the Convaid "Cuddlebug." Cute as it is, the damn thing is heavy. There's no way I'm getting it in or out of the car any time soon, if ever. We could really use an adaptive van, but there's no way that's happening any time soon. It's a good thing Cam is strong.

I used to be the strong one. (Sigh.) Even a year or so ago, I could throw the Monster over my shoulder and carry him up the stairs. When Atiyyah was alive, I used to carry him, his ventilator, his go-bag. Now, I struggle to carry Puggles and she's a peanut at 16 pounds.

EDS has not been kind to me these past few years. I am afraid of what the next decade holds for me. If (or more realistically, when) I do end up in a wheelchair, let's hope I get one as nice as the Cuddlebug.

Saturday, September 25, 2010


I used to write.

A few years ago, I overheard my brother telling a story. It went something like this:

"As a kid, Xan had an old school mac. By the age of 8, she had completely filled the hard drive with Word documents."

True. I was sort of a lonely kid, I guess.

Over the years, things became more complicated and my writing, which had also been fairly introspective, became too emotionally painful. I gave it up entirely a few years ago.

I'm not looking to make money. Heck, I'm not even looking for fame. On some level, I'm looking for a connection to the outside world, which is hard to maintain as a person with a disability and a parent. I have major blog-envy--there are a few blogs I've been reading on and off for the last year and I wish I had the sort of following they did. Of course, it would help to write!

So here's my start. Nothing glamorous. I'm Xan. I have 4 wonderful children and another in heaven. My little girl, "Puggles" is facing some major medical challenges. As though that wasn't enough, I have Ehlers-Danlos Syndrome, a connective tissue disorder that gifted me with faulty collagen, unnatural flexibility and chronically painful, unstable joints. I'm booked for surgery #5 on my right shoulder this week, so I should have some time to devote to blogging while I recover.

Well, that's all the fingers will allow for now.

Thanks for reading!