Friday, September 25, 2009


I thought I'd let you all (18 of you now!) know how I am doing with my ankle brace.

If I were a normal person... But I'm not so that doesn't matter...

Anyway, I've been wearing this ankle brace for most of my waking hours since I bought it. It fits mostly okay, and it reduces the movement I have in my ankle. However, it goes from about the middle of my foot to about 1/4 of the way up my calf, and in so doing, it does not restrict enough of the movement in my ankle, and it does absolutely nothing beneficial for the looseness of the bones in my foot.

I was walking around, slowly, with my ankle brace on, and I had a feeling, almost like a charlie horse in my foot. Almost. It didn't go away, so I had to go sit down and see what was going on. When I got my shoe off and looked at my foot, it looked wrong. I poked around, gently, and I managed to simultaneously find and fix the problem. It was a dislocated joint in my foot.
The one that's circled in red to be precise (but on my left foot). It doesn't feel nice when you dislocate that...

After that little episode, I've been extra careful how long I stand with any weight on that foot with my brace on, and I actually managed to do all my dishes without dislocating anything!

Another wonderful thing about my ankle brace, is the hole they have for my heel to poke through... It's just big enough to be troublesome. It seems to direct my heel to the outside, without doing anything to the rest of my foot. I find that especially when I'm sitting with my feet flat on the floor, it feels like my ankle wants to fold in on itself, starting with the heel.

I also managed a highly improbable sublux while wearing my brace, in the exact spot where it REALLYFREAKINGHURTS, because I was taking off my shoes. Once the shoes were off, and I'd wiped my tears on my sleeve, I tightened my brace, and that helped for an hour or so.

Still really considering the whole cast option, as I still have problems sleeping without moving...

On another note, I had an itch between my shoulder blades yesterday, and I reached to scratch it with my left hand... (Stupid!!!) and I subluxed my shoulder in a way that caused my entire arm to go numb, tingling, and very weak for a few hours. You'd think I'd know by now NOT to use my left arm for reaching... But you'd be wrong, even geniuses have blonde moments...

Monday, September 21, 2009


After my wonderful lovely fall down the stairs I went to emergency, had x-rays, got poked, prodded, etc. and sent home with no answers.

At my follow up appointment with an ortho surgeon on Thursday they booked me in for 9:30am. I got there, and I signed in... waited... waited... finished the book I was reading... waited some more, they brought me into the little "room" followed by more waiting...

Out comes this nice little lady, after looking at my x-rays from emergency, and she has a posse of 2 additional doctor-type people. She's stage whispering "You guys should talk to that lady right there," she points at me, "she's interesting."

Having someone call you interesting in normal social situations is perfectly acceptable. It's nice when people think you're interesting. But in a hospital, when someone says 'interesting' they mean 'Medically Interesting' which means a lot of ogling and a LOT more poking, prodding, twisting, pulling, stretching, and PAIN.

So the nice lady comes over, and she says "You have Ehlers-Danlos Syndrome? Hypermobility type?" I say "Yes, you've heard of it?" to which she replies, "I've seen several people with EDS."

At this point I'm sure there is a look of utter shock on my face.

Then commences the poking, prodding, pulling, twisting, man-handling, stretching, and other various torture. When all of this is finished, the nice lady calls over her 2 partners in crime, and says to me "Don't tell them you have EDS." Once the guys get over there she promptly tells them "It's NOT in her head... It's all in her collagen" (with a conspiratorial wink to me). Then she leaves them to torture me some more.

The first guy goes through the whole process again, asks me about previous injuries, laughs at me a little (in a concerned, and caring way). Then says "You have Marfan Syndrome." To which I reply, "Nope, that's my husband, try again." I figure the guy gets some points for trying...

Second guy goes through the whole thing, and comes up with Ehlers-Danlos, but he's not sure which type, because there's "Like three different types, right?" It's MY turn to laugh now as I inform him there are many more than 3 different types, and I have the Hypermobile type.

At this point I got to show off my pretty Medical ID Dogtag (, on the front is my name, and on the back it says:
The nice doctor guys said it was nicer than a lot of the bracelets they've seen. I agree.

After all of this fun, I am nearly crying because of the ridiculous torture they have inflicted upon me. And the first guy tells me it's a couple of stretched tendons, and I need to go buy a brace, and wear it "until it's healed" no time frame on that one.

I'm VERY VERY tempted at this point to go back and request that they cast the stupid thing, because this brace, in order to be effective, needs to be TIGHT. When it's tight enough to be effective, it either cuts off some circulation to my toes, or it digs into my shin, and the top of my foot (or both). It also has the added bonus of needing to be removed for sleeping. Waking up at 3am on a Saturday is bad enough without the "HOLYMOTHEROFGODPAIN" that comes out of my mouth because I had the nerve to move my foot as I slept.

The only problem with this is I work for a living, and taking another half a day off to go to the cast clinic is not really an option.

So for now, I get to pretty much suck it up and deal with it.
I'm not.

Spellcheck is funny, it doesn't recognise: Ehlers, Danlos, Hypermobility, Marfan, Hypermobile, or HOLYMOTHEROFGOD as words...

Wednesday, September 16, 2009


I have another follower!

Welcome to my life!

With my recent disaster... I can do even less physical activity than I could before. Dammit. But I did get a new chair, and it's so much more comfortable than my old chair, and I can sit and crochet for HOURS!

My friend is throwing a fundraiser for blood cancer awareness, and I will be donating as many pretty hats as I can make by Saturday. I decided this yesterday, and after work I crocheted 2 hats. They're pink!

Since I seem to get more comments when I show you people pretty pictures, as opposed to stretching my creative writing, and detailing my wikkid awesome fall down some stairs... Here's some pretty pictures!

This is MY hat.

These are my nephew's octopi.

This is one of the 3 (completely different from each other) hats for the nice Olympic athlete ladies.

And those two are my niece and nephew's Christmas presents... My other niece is going to get a pink/brown/cream colored one... Like Neapolitan ice cream!

Monday, September 14, 2009

Only me... Or anyone else with EDS...

I went out on Friday night.

I wore high heels.

I drank some alcohol.

Now picture someone with really loose joints going down some stairs. Now imagine this person has little to no balance at the best of times. Plus alcohol, and high heels.

I put my left foot on the top stair, lifted my right foot, and by the time all of my weight was on my left foot... BAM! Dislocated my ankle.

Usually I'm pretty good at catching myself when I randomly dislocate something and start to fall over, but not when I'm slightly intoxicated, and wearing high heels. My right heel caught on the second stair, so my right ankle collapsed, I landed on my knees a few stairs further down, and all of my weight was then transferred to my left foot, which in retrospect, most likely caused it to dislocate either further, or in a different direction.

Luckily for me, being intoxicated helped to put me to sleep that night.

I was convinced that I had broken my ankle, but I wasn't going to go to the hospital at 3am, especially when I know it's not an "emergency" and then you have to wait for a ridiculous amount of time because it's Friday night/Saturday morning.

When I woke up in the morning I checked it out, and it looked fine, no swelling, only mild bruising on the top of my foot. But being me, and having sustained various injuries, I didn't think it felt like a dislocation, or a sprain, or a pulled muscle, or tendons or ligaments. It felt like bone, and it felt like broken.

Went to the hospital... got there at 7:30 Saturday evening. They triaged me, sent me for x-rays, had the x-rays done, looked at, and sent a doctor man to talk to me, explain there was nothing broken, and set me up with a follow-up appointment with ortho at the cast clinic. I was out of there at 9:30pm. It was the fastest door-to-discharge I've ever had in my entire life.

So at the hospital, I've noticed they're really good at telling you what's NOT wrong. "Your ankle is NOT broken, you're being discharged, have a nice day!"

I'm the kind of person where I think I would rather pull out one of my toenails with a rusty pair of pliers than go to the hospital. I don't go there unless something is wrong. I would like to know what IS wrong, not just what's NOT wrong.

Am I too demanding?

Oh, and my favorite part...

"HOW did you injure your ankle? You fell down the stairs? Oh, you dislocated it FIRST? And THEN you fell down the stairs? Which caused you to injure it AGAIN?"

Pretty much the conversation I had with every single person at the hospital.

Tuesday, September 8, 2009

wow... life...

So, I haven't posted in a while... again... sorry...

Umm... Life has been extra mean to me lately. I have my personal/personal crap that I'm dealing with, my personal/health crap that I'm dealing with, my personal/business crap, my business/business crap, my health/business crap, and my other crap...

So I haven't had time to post anything... and I STILL DON'T HAVE A COMPUTER AT HOME. Not that I'm complaining or anything... (If you could see me, you'd wonder how my eyes stayed in my head with that eye roll... and the sarcasm... not dripping... it's like a cascade, or a waterfall... or if the Hoover dam burst...)

I've almost decided to give up solid foods, and switch to a liquid diet, so probably some variant of slimfast shakes, meal replacement shakes, or ensure, as my digestive system is horribly horribly ineffective at present. Add to that all of the usual female-specific cramping, and the fact that my womanly parts are messed up right now, and you may have some idea of the abdominal pain I've been suffering these last few weeks.

Happy news!!! I received an order for some hats! There's a little store in the trendy part of the city that ordered 10 hats, with a total of 50 interchangeable flowers. I started last Saturday (Aug 29th) and I finished them this Saturday (Sept 5). It was a lot of work. I also have an order from a friend for a crocheted bear (like the one I made for my niece), but blue, 'cuz it's for a boy.

More happy... My hubby and I had our second wedding anniversary on Sunday! Didn't do anything exciting, but it's truly amazing what has happened in those 2 years!

On another note, I read a post about comments recently, and the topic of comment etiquette is intriguing. I see in my little Blogger info thing that I have 15 followers. I am truly amazed by that. There are at least 15 people in this world that care about me, and you guys don't even know me. You just drop in on my life, and read about my struggles, my pain, and my accomplishments. For that I am thankful. If you feel that your comments have to be witty, or funny, or informative, think again! I am happy to know that someone cares. Even if you just say "I get it" that's enough.

Edited on Wednesday, September 3rd to include:
I finished my blue bear yesterday night at 11:00 pm, and his head is wobbly, so I'm gonna make him a scarf, and send him to the studio for a photo shoot, and hopefully get some pic of some stuff...