Amazing Progress, and a Giant Leap Back (and sex too)

I've been living the barefoot experience for 6 whole months now. (Hurray for Vibram Five Finger shoes!!!)

And in those 6 months, I've fallen a grand total of... Once.

Pretty incredible isn't it? After about 18 months of falling nearly every day, multiple times a day, I have had 6 whole months of gravity being nice.

I also haven't used my cane in the 6 months since I got my new shoes.

This month seems to be trying to undo all of my progress.

It all started with my period, which turns me into a rag doll, floppy all over the place. This was immediately followed by a really cold snap, where it dropped more than 30 degrees overnight. Then we had a chinook, and the temperature went up about 30 degrees overnight, and the air pressure just goes nuts...

Then I did something that may shock you... I had sex with my hubby. Not just sex, but really amazing sex. Letter-to-Penthouse worthy sex. The kind of sex that releases so many endorphins, that you don't realize just how horribly dislocated your EVERYTHING is until it's all over, and you've had a few hours sleep...

The amazing sex was on Sunday night, and by Monday at noon, I could barely walk. Tuesday rolls around, and I'm shuffling like a 90 year old. I had to take breaks at work so I could just sit by myself for a few minutes and cry... It felt like my pelvis was separated.

Fast forward to Thursday, my mommy comes into work, and she has bought me a pair of forearm crutches, so I don't have to hobble quite so much. I tried them out, and aside from being about 2 inches too short (there was a misunderstanding with the lady who sold them) they are so much easier to grip than a cane! The angle is much nicer on the wrists, elbows, etc. And the hand grips are nice and soft, and they are shaped properly so my hands actually fit. They also have shock absorbers like my awesome cane does.

Mom said she'd take them back to the medical supply store, and get a pair that's a bit taller, so they'll actually fit me.

But it's so annoying... It looks like this is going to be the new normal for me... Have sex, then use crutches for the next couple of days while my pelvis re-knits itself. It's been getting worse for a couple of months, every time I have sex it's like I need more recovery time.

I'm really hoping the doctor will get back to me about prolotherapy, so I can have 100 needles in my hips/pelvis/lower back, and be able to have sex again... Seriously, it's one thing I really don't want EDS to take away from me. That should work, actually... Tell the male doctor that EDS is ruining my sex life, and prolotherapy is the only thing to fix it... Maybe he'd have more sympathy then.

Cold Weather Sucks

Prepare yourself for whining, dear internets, as I have nobody else I'd rather complain to. You guys get me.

Up here in Calgary, we have interesting weather. This year we've had an extremely mild winter so far, with the exception of the past week. The temperatures were around freezing, until they dropped to about -30C over night. This will (hopefully only) continue until the weekend.

All week I've been in extraordinary amounts of pain.

Ridiculous amounts of pain.

My neck hurts so much, I just want to lay down and cry. My hips have been aching so badly that I don't want to move a muscle, and I can't find a single position where they aren't growling at me. My hands and wrists are so stiff, I can barely type. My jaw is so loose, I can't eat anything without it dislocating, and choking has become a definite hazard. And I have a migraine that's giving me double vision. My left foot also joined in with its own new trick: folding almost in half, lengthwise, in such a way that bones grind together, and my littlest toe ends up nearly under my big toe.

I thought it was all hormone-related, as I was on my period last week, and I'm usually more of a rag-doll at that time of the month. But as soon as I stopped bleeding, the cold snap hit, and I had no recovery time.

I've been sorely tempted to break out my cane in the last couple weeks, but I know that my wrists and shoulders wouldn't be able to take the extra strain, so my cane remains unused.

Thanks for reading, and hopefully this weather will be nicer soon, and we can all feel better...

Research, and Prolotherapy

As most of you guys know, being a patient can sometimes feel like a full time job, especially when you have a relatively rare diagnosis like EDS. You have to do hours and hours of research, just to find one little tidbit that clicks in your brain, causing a "eureka" moment. Then there's more research to see if the findings have been duplicated independently, then printing the relevant information, making a doctors appointment, and actually handing over the 3 sheets you printed out of the 3000 you read. At this point, when you hand over the information you spent so many hours trying to find, most doctors just glance at the sheets, say "Hmmm" then go about the appointment as though you weren't there.

That's been my experience at least.

Until, last week, when I was looking through an EDS website, and I found a link to prolotherapy, as performed by a company in the U.S.. This place is the only one I've found that does "whole body" prolotherapy, treating many areas at once, and letting people know that it may take up to 18 months of treatments before you receive the full effects, and there's always a possibility that you may need "tune-ups" every so often. This company also gives an 85% success rate for treating EDS patients, which is much better than the 50% most places give you.

There happened to be a list of practitioners trained by this company, and one of them lives in my city. So I e-mailed him. And he e-mailed me back. With questions about me, my life, and my various injuries.

I am now cautiously optimistic... Once he responds, hopefully with good news, I can go about getting the necessary paperwork in order. See, I have to go to the walk-in clinic, and request a referral, and wait for an appointment, and it's probably going to take months and months, just like everything else medical in this province. But maybe, if I'm "interesting" enough, he'll take pity, and fast track me... (probably just wishful thinking on my part)

Most uplifting statement I've yet read relating to Ehlers-Danlos Syndrome: "By strengthening structural weaknesses in the body, as treatments like Prolotherapy, the problems associated with Ehlers-Danlos Syndrome may be alleviated permanently." Wouldn't that be grand? I'm off to go daydream about one day riding a bike again...

Two Weeks Off

Over Christmas, I had 2 whole weeks off work, and no big plans aside from visiting with family for 2 days.

It was pretty sweet. I haven't had 2 whole weeks off work since the last time I was unemployed. I barely knew what to do with myself... So I watched Stargate. The entire series.

I also dealt with the wonderful world of insomnia again. Apparently, If I don't use an alarm clock for a week and a half, my body decides to switch back to a 36 hour day. Which is all well and good, until I have to wake up at 6am and I can't seem to fall asleep after hours lying in bed.

My weird neck pain from about this time last year also came back, and stayed for 3 days. Three days of not turning my head, while twitching, is not easy. Impossible in fact. So every now and then *twitch* was followed by "Ow, dammit, frick" and other such words, then some tears. I would then go lay down, and steal my hubby's pillow for a bit.

I also lost 10 pounds over Christmas... Which is all well and good aside from the part where I couldn't eat anything, and my tummy was all angry. Digestive issues are so far just about my least favorite thing to deal with.

I hope everyone had a Happy Christmas, and I wish you all the best in the New Year.