Thursday, September 30, 2010

Another Win!

So, Tuesday was my original "urgent" neurology appointment. If I have any say in the matter, I'm going to keep this neurologist. He's assertive without being pushy. Knowledgeable without the God complex. It's refreshing.

Unsurprisingly he had nothing new to add diagnostic-wise, but he is a firm believer of diagnosis before treatment.

He figures it is either some sort of myoclonus, or some sort of tic; but with the falling episodes thrown in, it looks more like myoclonus, possibly myoclonic epilepsy.

He's going to send me for an EEG. Which is what the movement disorder lady said she was going to do back in April.

Hopefully this guy is a bit less patient with test results, and actually sends me for the test.

Oh, and as an added bonus: He's CUTE.


Update on my best friend: she chipped a piece of bone off her hip, and it took 5 x-rays, and 3 specialists to figure it out. She's walking better, because the bone chip is no longer floating inside the joint, but I'm not sure what the next course of action is.

Wednesday, September 22, 2010

Envy... It's Horrible

My best friend of 22 years has EDS.

She also has 2 kids.

She has followed her heart, and lived her dreams her whole life.

I envy her so much it hurts sometimes.

I've tried to get pregnant. It'll be 2 years in November since my hubby and I started trying to conceive. Nothing yet. I've had some ups and downs, and thought I was pregnant when I missed my period for 2 months... But no... My body was playing a very cruel trick on me.

I had dreams of becoming a speech therapist. I wanted to work with deaf and hard of hearing children, to teach them how to speak. I wanted to make a difference. Something important. Using sign language every day would cause too much fatigue and pain. And the days where I need braces, I would have a "speech impediment" due to lack of movement. I also would be unsuited for the college/university life. There's too much running around, and juggling of time, and the need to keep working as I put myself through school.

On the weekend my friend stood up from a squatting position, and dislocated her hip. She tore a tendon, and her hip socket filled up with blood, and she had to go to the hospital to be put back together. She had to pack up her 2 kids and move in with her grandparents until she is healed, because she can't take care of them on her own.

I am afraid that with my husband and I both being disabled, if we were to have children, and we were both out of commission at the same time, we might not have the resources available to help us out. And what if, god forbid, something happened to my husband, and I had to take care of the kids by myself? I don't think I could do it.

Even though my best friend has worse injuries than I do, requiring medical intervention, I have injuries more frequently. She goes to the doctor, and says "see, it's dislocated" and they have no choice but to believe her, and they give her pain medications - strong ones. I go and say "I put it back in myself" and I get laughed at, and I still get called a faker, and no way is anybody going to prescribe me something stronger than Tylenol 3.

I dislocated my hip in bed last night... Rolling over. I got it mostly back in after about 10 minutes, but it took the better part of an hour before it felt like it was where it should be. I'm at work right now, and I've been limping around all day. I started to think of a brace last night. One that would be similar to a wetsuit, going from my knees to my elbows to keep me in place. I don't know how realistic that would be, to wear it every day. But if I could figure out the logistics, I think it could be beneficial.

Monday, September 13, 2010


It was my nephews birthday on the weekend. I finally finished my sister-in-law's birthday present - a sweater - and took it up to her on the weekend (she loves it!).

Did a lot more standing and walking and STAIRS!!! - OMG THE STAIRS!!! - than I am used to. Slept in not-my-bed... Spent all of Sunday hobbling around with the aid of my hubby's percocet; which amazingly did something for the pain, while leaving my brain mostly unaffected.

I think I may have actually done some real damage to my hip when I fell a week and a half ago. Even with the percocet, and the incredibly reduced pain, it still didn't feel like my hip was working properly. The pain is now in all of my hip, through my tail bone, up my spine to my waist. Not comfy.

Thursday, September 9, 2010

3 out of 6

I've used my cane 3 days out of the last 6. I'll probably need it later today as well.

I'm afraid again.

Is this a new page in the book of my life, a new chapter, or a new book altogether?

I know we EDSers take ridiculously long to heal sometimes, and a "permanent" injury can heal months or years down the road... But it would be nice to have advance warning which type of injury something will be.

I honestly thought my shoulder would have healed after I sprained it in 2006. It didn't. After about a month of healing, it stalled. That's all the better it got. It feels better some days than others, but for the most part, it feels like it's a fresh sprain more often than not (who knows, I might re-sprain it every other week).

After 6 months, I had almost given up on my ankle healing. Wearing a brace for that long is worrisome. But (I'm still not sure if it's related) when I started the one set of pills, my ankle was almost miraculously healed.

The twitching seems to be less frequent than it has been since January. Still injuring my left side when I twitch, but not as bad as I've been used to.

I wish there was a set rule. Either heal, or don't heal, but some sort of consistency would be nice. I never know what to expect. The constant changes in my abilities are unsettling. I want some normal. Some same.

Right now, it feels as though someone is stabbing me in the hip with a screwdriver...

Friday, September 3, 2010

Bad Day

Yesterday was a bad day.

I had very little sleep the night before, so I was tired all day. I have also been feeling a lot less stable while I walk; my hips just don't feel like they're in their sockets. My hands were giving me a lot of trouble yesterday as well. It hurt to write (really not fun when that's a large part of my job).

Around 3:00pm I fell. It was different than ALL of my other falls this year. My falls have been from a standing position. I was walking yesterday, and my hips and knees quit taking orders. So I fell forwards, landing on my hands and knees (bruised now) but my hips wouldn't hold me up in that position, so I fell more, and landed with my right foot under my left thigh, and dislocated my left hip quite badly. The landing also dislocated my left shoulder, subluxed my wrist, ankle, knee and collarbone.

By 4:30 when I got off work, I was unable to walk unassisted. I needed my cane for the rest of the day, and I really needed to run a few errands.

I found it very strange, when I went to Wal-Mart, walking with my cane. People definitely treat visible and invisible disabilities differently. When it's obvious that I'm walking with a cane, strangers with walkers and canes give knowing looks, and stop you to chat in the hallways. But usually I just walk very slowly; occasionally with tears welling up, and I guess I must just look depressed to people. It was a strange feeling of community.