Change

I commented on a friend's facebook status the other day, and he was online at the time, and we started IMing. He is currently out travelling the world, and he's been practically everywhere. I have only seen him once or twice since high school, which ended about 5 and a half years ago. It made me realise that the most changes I've been through with EDS, and the most injuries, and the most disabling aspects have all come SINCE then. I realised that this friend of mine, who used to be one of my closest friends, really doesn't know me at all anymore. He was shocked when he found out that I'm disabled. He was shocked to find out about all of my medical mysteries, and the lack of care I'm receiving. Back in high school, I only really had daily issues with my left shoulder, and various sprains (along with being very klutzy, and having no sense of balance). Now I am having daily issues with both shoulders, both hips, hands, wrists, ribs, neck, spine, etc. It shocked ME to realise I had changed so much in such a relatively short amount of time. I live with me every day, so I adjust slowly to most things when they creep up.

I'm not the same person as I was back then. Not even close. I am definitely more vocal when things seem to be unfair, for myself or those around me. If I see someone who needs help that I am able to give, I will help to the extent of my ability. I find I've grown more compassionate, and less tolerant. I will NOT tolerate abuse of any kind toward anybody with a disability. I am cautious when offering aid to those with visible disabilities. I understand now, that even though we may look like we need help, the most helpful thing sometimes can be to allow us a sense of accomplishment, to know that we are able to do something, even though it may be difficult. I listen more. If I offer assistance, and it is turned down, I will not push.

I have more patience now. I know that not everything can be done RIGHT! NOW! DAMMIT! Just because we may wish it to be.

I think I've finally found my silver lining when it comes to EDS. Even though I'm physically a lot worse off than I was before I had all these symptoms and problems, I am intellectually, and emotionally a much better person for it.

And just in case I don't post again before the 25th: Happy Christmas to those of you who celebrate, and have a nice December 25th anyway, if you don't.

100th Post

For my 100th post, I had long ago planned to do something special.

Life is just too stressful for that right now though.

This week has been pretty bad. On Tuesday, we were short-staffed, and I had to do double my usual work. Right before lunch, my left hip and my right knee decided to give out at the same time, causing me to fall and land on my left elbow, dislocating my shoulder and stretching all the muscles in my lower back. The pain was a 9 on my scale, and I was shuffling like a mummy, and wincing every time I moved, with tears welling up constantly until I took some "emergency stash" painkillers, which fuzzed my brain, and brought the pain down to about a 5.

Wednesday, I dislocated my left hip, and it's still not back where it should be, and it's too icy outside to use my cane. I also developed laryngitis on Wednesday. Ooh, AND I stabbed myself in the eye with the corner of an envelope. That's what I get for trying to open the mail when I'm twitching like a drug addict...

Thursday I woke up in horrendous pain, with a dislocated right shoulder and elbow. While I was at work, I got yelled at because I reminded my boss of what he said he'd do 3 days earlier, which was contradictory to what he was saying right before he yelled at me. I started to cry, and left the office. He followed me, yelled at me some more, and told me that if I couldn't handle the stress of working here, then maybe it's not the job for me. This sounded very much like he was about to fire me. I was ready to scream at him that if I lose THIS job, I'm not going to find another job that I am able to do (nobody else will hire me with the foreknowledge that I will constantly be injuring myself), and that my husband and I will be homeless by January. 

Welcome to my pity party... We have cookies.

Just looked at my post list... I'm at 98 posts, but my post counter said I had 99 right before I clicked on "New Post" and wrote this one. So... Maybe I'll have a super spiffy 100th post next time, when I actually reach 100 posts... Honestly don't know why it lied to me...

Honorable Mention?

For those of you familiar with Darwin Awards, my most recent "stupidest injury" should definitely have earned me an honorable mention, that is of course if I had had any control over the event which transpired.

I was sitting in line at a drive-through window, and I twitched. It dislocated my collar bone, which collided with my larynx, rendering me unable to breathe for a few moments. It took the better part of my drive home, including drinking my entire medium iced tea, to put my throat back where it should be.

That is my life again. Twitching. Choking on myself. Reducing my dislocations. Wash, rinse, repeat.

On a happier note, the fundraiser for the precious little 4 year old girl I mentioned was a great success, and the parents should be able to pay for her rehabilitation until the health care system gets its collective head out of its @$$.

Much Too Much

Today is the fourth anniversary of my fathers' death.

Sitting here, I have been trying to figure out how I've aged twenty years since he passed. I certainly wasn't the average carefree 19 year old when he died. I had already gone through the horrible experience of a failed pregnancy, and I was resigning myself to the possibility of life without children. I was aware that I would probably end up in a wheelchair well before my peers. But at that time, even with the dislocations, I was still able to stand, and walk, and bike, and rollerblade, and hike...

I've gotten married since he passed. Both of his parents are gone now too. I've isolated myself from his side of the family. I've bridged the gap again, finally being able to see them and not think about him. I've built a convincing mask for myself; a protective shell which only breaks down around certain people, or if I've neglected to give myself an outlet for the pain for too long.

I've been hardened. The world stopped being a welcoming place for me. The softness left. All I felt for a long time was sharp, searing, hard.

I am learning to be open again. To express my feelings.

I can no longer keep my mask on. I have too much raw emotion within me to convincingly contain it any longer. I have rage inside me. It is directed toward the health care system, and the ways in which it is failing me, and the people I care about.

I met a little girl yesterday. She has had over 20 surgeries on her brain. During one of the most recent ones, the surgeon screwed up with a stent placement, and scratched her brain in the area that controls motor function. Her eyes are no longer synchronized in their tracking. She has lost the ability to walk unassisted. The surgeon fucked up. The medical system is denying liability. The wonderful health care we are supposed to have in this country is failing this precious little 4 year old. Her parents have to pay for her rehabilitation out of their own pockets. Because someone else fucked up. It has renewed my rage. I want to walk arm in arm with this girl's parents, march into somebody's office and demand that something be done. NOW. For God's sake, she's just a little girl. She should not have to pay for someone else's mistake.

The misery I live with pales in comparison to this family. I want to help. I want to fix the system. I want to find the bastard responsible, and I want to beat him. Repeatedly. Until he admits what he's done, and vows to do everything in his power to fix it.

Alas, I am just one person. We all must band together, and force the government to fix the system. It is broken. And all the people who really need help are so discouraged by the bureaucracy, that they in turn become broken; unable to fight the system any longer, and nothing gets changed.

On this day, of all days, I would expect karma to give me a break. I'm dealing with so much, even though it shouldn't matter that my father died on this day 4 years ago. I miss him all the time, but it sinks in more when you can call it another full year. I got a letter in the mail today, which tells me I owe the government money, because someone gave me false information. Right now, between 2 or 3 different branches of the government, or through government run institutions, I am owed a great deal of money. They're charging me interest on what they say I owe them, but do you think they'll pay it on what they owe me, if they ever decide to pay me? Probably not. That's not the way they work.

I could really use a break. From everything. I just want to be able to not feel for a while. To get away from the finances, the medical issues, the memories, the pain, the injustices of the world.

You don't want to be around me right now. Not unless you really feel like listening to me rant. Loudly.

Life is Crazy

I've been experiencing everything to the extreme lately. I'm either in so much pain that I can't leave the couch, except to lay on the floor to realign my spine; or I've got so much energy, and my pain is so low (2-3) that I can actually go out and accomplish things (that was just the one day though).

The problem with the latter is that I end up doing too much, washing the dishes, making supper, going out to the mall, and wandering around looking for long-sleeve t-shirts, going to Canadian Tire, and Wal-Mart looking for windshield wipers, going grocery shopping.

I feel it the next day, and I have to just lay still. Not moving. Until the cat comes and lays on my ribs, pushing them into a "normal for most people" position. But that happens slowly enough, with the constant weight and heat that I don't notice it until I sit up. That's when the screaming pain starts up again, and the evil clowns once more try making balloon animals of my spine.

My knees are bruised. I still fall. On my good, productive day, I was standing in line to pay for my groceries, and I fell. It would have been comical if not for the concern on the faces of those around me.

I went to a bar recently, walking with my cane. I went out for several smokes throughout the night. People stepped so far out of my way. Every time I went out. They apologized for being in my way. They weren't. It was almost like they were apologizing for existing, it was said so many times. I felt horrible. I was ready to hit people with my cane by the end of the night. "Stop saying you're sorry!!!" as I whack them over the head. "It's not your fault I can't walk normally" as I hit them again... "Stop. STOP. STOP!!!" Maybe that's an odd way to feel, but it really grates on my nerves when people apologize like that, for things they have no control over. I could understand apologizing if they'd run into me, or accidentally kicked my cane out from under me, but not for standing, or walking, well out of my way. I'm prepared to get out of YOUR way. I'm the one with cane. I should be the one to change MY path. That's the way it works.

And the Winner Is...?

I had a follow-up appointment with my neurologist yesterday, and I had to drive half an hour to see him, for a 3 minute appointment. GRRR... Anyway, I don't have epilepsy. It's still not tourette's. The neurologist has no other ideas. He says normally the next course of action would be to send me to the movement disorder clinic, which I've already been to, with horrible results.

He is going to recommend that my family doctor sets up a 24 hour blood pressure monitoring test, as well as a test to check if I have POTS (These tests would be for my unexplained falling down, and have absolutely nothing to do with my twitching).

The weather lately has been weird. It's at its coldest point this year so far, and it's still significantly warmer than one would expect for this time of year.

I have started taking Gabapentin (Neurontin) 300's 2-3 times daily, and they seem to be reducing the frequency and severity of my twitches. Which means I don't dislocate my shoulder every time I twitch now... Just sometimes. When I looked at the symptoms this drug is used to treat, it fits the symptoms I have; including pain and spasticity, as well as helping me fall asleep and stay asleep.

In other news: I feel like I was attacked by an evil clown. It feels like he tried to turn my spine into a balloon animal.

I have a new stupidest injury... I really wish I could stop accumulating these... Yesterday I was washing my hands, and I grabbed some paper towel to dry them off. While I was trying to dry between my fingers, I simultaneously dislocated ALL of my fingers at the base knuckle. It hurts to do anything with my hands today, and I've been dislocating and subluxing my fingers all day.

Lest we Forget

I never lost anyone to war.

But my family has served, or is currently serving in 3 different countries on land, at sea, and in the air.

My grandparents never talked about war around me, so I don't know what horrors they may have witnessed, or what deeds may have haunted them.

But the best thing they taught me was acceptance. Acceptance of people from all races, cultures, and backgrounds. They taught me not to judge others by the way they look. They taught me that all people are equal.

They taught these things to their children, their friends. They tried to rid their circle of hatred. They spread joy, and helped those less fortunate.

My grandparents are both gone now, they left this world peacefully, surrounded by family.

My hope is that all soldiers are so lucky.

Good News, Bad News, and My Own Stupidity

Bad news: My Cool Mom had a heart attack Monday night.

Good news: She's fine, and was released from hospital Tuesday afternoon.

Stupidity: I went to the hospital after work yesterday to visit her. I parked my car about 6 blocks away from the hospital, because it's the closest free parking. I walked with my cane. It took me about 15 minutes to get to the right part of the hospital, and to call the nurse desk to get a room number. The response? "Oh, she was discharged earlier today."

Which is a good thing, REALLY. That made me happy. But instead of a nice visit where I could recuperate from my walk, I now had to immediately get back to my car. About 3 blocks away from my car, I had to switch which leg I was using the cane for, thanks to an earlier ankle injury, but I still had to use my right hand for it. A block from my car, I dislocated my wrist and shoulder, and had to hobble back to my car without my cane.

I get into my car, and pull the door shut, resulting in THE WORST dislocation I've ever had with my left shoulder, and I screamed a bit, because OUCH. Dammit. PAIN.

On my way home, I stopped at a liquor store, and got some rum. While I was trying to pay, I was twitching so bad I thought the lady might call the cops on me for impaired driving (cuz sometime it looks like I might be on crack). Once I was home I had 2 large glasses of rum and Pepsi, smoked some medicine, and went to bed.

All of that was after an absolutely hellish day of falling down and dislocating my left ankle, knee and foot; as well as both hips, my left shoulder, and various fingers. I don't know how I make it through the day. Today, I can feel EVERYTHING that I went through yesterday. I just wanna go back to bed.

Cold Season

My hubby caught a cold... 3 weeks ago. He still has it, even though he gave it to me 2 weeks ago. I still have it, even though I gave it to my co-worker a week ago.

It isn't fun.

In weirder news: I had a dream.

That's not the weird part though. In my dream, I had fallen asleep with a dislocated knee. The way it was dislocated cut off all blood flow below my knee. When I woke up (in my dream) I went to the hospital, because it really didn't look right. They looked me over, found that all of the tissue below the knee was dead, and told me they had to amputate. My only concern at this point is the fact that I'm about to lose my memorial tattoo; a frog on my right ankle, which I had done on my father's birthday, 3 months after he passed away. While I was talking to the surgeon, going over all of the details about the procedure, I asked him if he could cut the tattoo off of my ankle, and use that patch of skin as the "flap" for my stump. He explained that since the tissue had been dead for so long, it would be impossible to reattach it.

So I asked him to cut my tattoo off anyway, and put the skin in a cooler, so I could take it to my friend, the taxidermist. He looked at me very strangely, before finally consenting with a sigh, and an "it's your body." Fast forward to post-op, and I am handing my best friend a little slice of myself, asking her to turn me into leather.

What I got back was a nice picture in a frame: My skin was stretched on a wooden circle, much like a dream catcher, and I had my memorial preserved.

Slipping Away

My sanity
My health
My self

They all seem to be slipping away.

I feel as though I am losing my mind, because of my health, and it's taking "me" with it. The twitching is horrible again. The first neurologists' words flow through me like an echo "psychosomatic... it's all in your head" as I throw things around the office, and get more papercuts in one day than is normal for a year. I find myself suddenly sitting on the floor, trying to put myself back together. I take out my cane, because I slept wrong and dislocated my good hip. I don't want people to look at me. I want people to SEE me. To know who I am on the inside. So they can remind me who I'm supposed to be.

I have a twitch-induced-stutter again.

My shoulder hasn't been in its socket for 3 days. The muscles spasm from overuse, in between the twitching, jerking, flailing which I am also powerless to stop.

It takes me an hour to get a glass of iced tea to where I am sitting. I have to stop twitching long enough to drink half of it before it is safe to carry it. I must concentrate with all of my effort to keep myself vertical, holding my glass with both hands, as I painstakingly inch toward my chair. I am still unable to ask for help if I know I can accomplish a task myself, no matter how long it takes me.

A day after taking my cane out, I put it away again. Is it because I feel better? No. My other hip is just as bad now, and the strain on my shoulder to use my cane means one more joint hurting, not one less.

Is that all I am now? A girl in pain? Or am I still in here somewhere, waiting for the time to come when the pain subsides enough to let my guard down?

Snarfle

It's my new word. I'm using it to describe breathing in and out simultaneously; also the sound made when one does so.

It's been happening a lot.

When I twitch, it feels like as my upper chest contracts, pushing the air out of my lungs, my diaphragm is sucking air into my lungs. It feels kind of like drowning. And choking.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I made my mom a sweater. It's blue.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I have received notification of my EEG appointment for 2 weeks away, and my follow-up neurology appointment for 2 weeks after that. I am once again cautiously optimistic about this whole thing. At this point any diagnosis would do. Or even a firm "it's not such-and-such" would suffice. The more things we know it isn't, the closer we get to figuring out what it is.

It Made My Day

I work at an auto body shop. We fix cars. We also arrange for rentals when necessary.

I never thought it would be so hard to find one.

It needed to be wheelchair accessible.

So I phoned my rental company, and asked. No luck. "Do you know who would rent one?" "No."

Then I phoned our back-up rental company. No luck there either, and they didn't know where to find one either.

Then I called the rental company we never deal with, and I couldn't find one there either.

So I went to my fall-back: Google.

And I found the ONLY wheelchair accessible van for rent in the city. I phoned them to make a reservation, and the price was staggering. Then I phoned the insurance company to make sure they'd cover the cost (they will). Then I phoned the customer with the good news. Then I phoned the rental company again, and confirmed everything.

I missed my lunch hour, but the thanks I got for going "above and beyond" was well worth my time.

I helped, and It Made My Day.

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.

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.

Fun

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.

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...

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.

FInally... A Win!

I had a doctor's appointment today.

The result?

I now have a doctor. Mine. The one who originally sent me to get diagnosed with Ehlers-Danlos, instead of calling me crazy. The one who finally insisted that my tonsils need to come out, after endless doctors told me it was best to treat the tonsillitis with antibiotics for 4 years... The ONLY doctor who ever listened to me BEFORE I was diagnosed with EDS.

*Happy Dance*

I finally have MY doctor back!

He's already in the process of gathering all my medical files... The ones from our old small town clinic... The ones from the walk-in place I've been going to for the last 5 years... The ones from the hospital, and neurologist... And he's going to go over everything, and hopefully prove once again that he is smarter than the average GP.

I am so happy to have a doctor who won't put me down, or brush me off again.

~

Didn't get to go mountain climbing this weekend either. There are a lot of forest fires in B.C. and they are blowing smoke into my city, and I can only assume it would be worse in the mountains. I was having enough problems breathing just sitting in my house that I didn't want to risk an asthma attack by going out in it. But it looks like the weather should be favorable to go this weekend.

Other than that, I really don't have much to update. Still in lots of pain. Still twitchy. Still dislocating everything for no reason... But YAY DOCTOR! *Happy Dance*

Dreamworld...

I had a dream last night.

I had been involved in a freak accident, and it was necessary to amputate my left arm and my left leg at the knee. I went through an entire post-healing week. So I've lost the limbs, and I have a prosthetic leg, and I'm walking with a cane. I went clothes shopping, and hiking, and to work, and mountain climbing. It was really strange.

It felt so real. Certain things were very difficult like tying shoes and getting dressed (putting on a bra one-handed is not fun!) Other things were impossible, like crocheting, or putting my hair in a ponytail.

The absolute worst thing though? Even without my arm, I was still dislocating my shoulder every 5 minutes...

I had a wonderful rest! *insert sarcastic eye-roll here*

It's Bad Again...

Twitchy all the time. Not "flappy" yet. I'm not trying to fly away. But it feels like it's going to come soon. Perhaps even today.

Can't sleep past 4am.

2 days this week, the lovely roommate's psychotic cat has been standing outside the bedroom door screaming for attention at FOUR IN THE MORNING. The cat is only psychotic when the roommate is away, which includes the last 2 weeks. He is driving me insane. So after 2 days of being woken up by a cat at 4am, and one day of being woken up because I REALLY HAD TO PEE at 4am, my body must think this is now the time we get up in the morning.

All the twitching means I've severely dislocated my shoulder, collar bone, and upper ribs; which in turn means I have been in LOTS of pain; which then means I can't get comfortable enough to sleep until I've been in bed for a few hours... Horrible cycle.

I feel like cutting off my left arm. It just hurts so bad. All. The. Time.

I've also been choking a lot lately. It almost feels like my larynx is moving, causing me to choke and gag. It's unpleasant to say the least. It's also made worse by the twitching, because it tends to cause me to look very far to my right, very quickly.

Something's Wrong...

Only problem? I don't know what it is.

I've been told over the past week that I "look sad" and I've been asked "what's wrong?" so many times I want to hit something...

But I can't think of anything which would put me into that kind of mood.

Emotionally, I feel fine.

Physically, I'm exhausted. As in, I haven't been sleeping (2-3 hours a night total), and I've been in extraordinary amounts of pain.

Psychologically, I think I'm fine. I'm a bit more easily irritated than usual, but that's explained away by the lack of sleep, and increased pain.

I'm starting to twitch more again. Not nearly as bad as it was before, but still unpleasant. I haven't started falling again, which is good. I'm not sure if it's because I'm REALLY paying attention to what my body's doing, or if the falling was a part of the medication-induced symptoms.

I crocheted a blanket on the weekend. Yay for productivity!

I had a conversation with my mom about mountain climbing, and I told her all about the part in the ice caves I've never been able to get past before. Then I said something really smart: "The difference between youthful enthusiasm, and adult-type determination is all in the mind-set. It's the difference between thinking 'I can't' and knowing that I can, but 'I won't' because I know what it will cost me. "

Off the Pills... YAY!?!?

So, I can walk again!

And I figured out why I was twisty and shaky!

Muscle fatigue! (I slouched and walked with my knees partly bent for 2 days, and it stopped completely... When I stood up straight, the twisty would start in my trunk; and when I locked my knees they would shake like crazy...)

Now I'm off the meds, more dislocatey... Not falling over... Not shaky... Not twisty...

I have a bit more energy, but a lot more pain. It's been mostly just my shoulder, and it seems to be... Different? Louder? Harder to ignore maybe? I don't know what it is, but my shoulder has been screaming at me since Friday.

But I have ENERGY! and I want to go ROLLERBLADING! But it's really HOT outside... :(

I think I'm going to see if we have a decent rock-climbing-wall-place in or around the city. It would be torture to my shoulders, but at least it might help prepare me for climbing the mountain this summer... Which I still FULLY intend to do.

Just Because I Didn't Go To Medical School...

Does NOT, by any means, mean that I am medically illiterate, or unknowledgeable about what is going on within my own body. And as such, I DO NOT appreciate the disrespect and belittling I received while trying to find a diagnosis for my movement disorder, so I can get on a treatment plan which might actually BENEFIT my health, as opposed to the "throw drugs at it until something works" method which is so rampant in the health care system.

I saw the neurologist yesterday.

She told me my symptoms were psychosomatic, and with the recent tragedy of my grandfathers' passing, I would benefit more from a psychiatrist than a neurologist.

She told me it was all in my head.

I wanted to smack her.

My Hubby came with me to the appointment, and he said he would have walked out of there within 5 minutes because of the way she was talking to me. But he stayed. Moral support and all that.

She contradicted herself with every other sentence.

She said that if there was any problem with my brain, they would have found it on the MRI, or with the blood tests. Because "If I can't see it, it doesn't exist." (Not a direct quote, but close enough)

The only thing she did agree with me about was getting off the Clonazepam. I have 2 more pills, and I'm done with it for good.

I asked her if she could write me a referral for the MAYO clinic in Arizona, and she said she would.

I am still waiting for one test, which she ordered 2 months ago... An EEG... And we'll go from there.

The experience was entirely frustrating, and exhausting, and if I NEVER speak to her again, it will be too soon.

She also stated that even though she didn't see me when I was hospitalized, she doubts the diagnosis of Truncal Ataxia, even if it was drug induced... I was seen by SEVERAL neurologists, and interns, and they ALL agreed it was Truncal Ataxia while I was in the hospital... It's like this lady is in her little diagnosis bubble, and if it's not something SHE can diagnose, then obviously, it doesn't exist.

Happy Birthday to ME!!!

It's my birthday today. I'm 23. Today I found it necessary to start walking with a cane, as I am incapable of walking faster than a snail without it.

It looks like I won't be celebrating at all, because I don't trust my feet enough to stand up and sing at karaoke. Drinking is pretty much out of the question with the meds I'm on, and I have NO ENERGY. None.

So it looks like my birthday, which falls on a rare Friday, will be spent at home with my hubby and our roommate. She said she'd cook yummy things for me though. So that's nice.

I need a nap.

...And That's When My Head Explodes...

Yesterday was... Bad.

I woke up to my new-normal... Unstable, tired, etc. Went to work, started twitching... A LOT more than I have been lately. Then I started with the "tremors" and by 10:00am I had the "twisties" ALL AT THE SAME TIME!

We're short 3 people at work right now as it is, but I was non-functional enough that by 11:00am I was sent home.

At least I didn't fall. The falling and the twisting seem to be mutually exclusive. Which is about the only silver lining I've got at the moment. Well, that, and I'm seeing the movement-disorder-tourette's-specializing-neurologist-lady on Monday.

And I've got a few things to say to her...

Good Grief!

No longer an oxymoron in my books.

My grandfather's service was quite incredible. He passed at 88 years of age; 2 years after his wife, and 4 years after his youngest son (my father).

Our family has been grieving for the past several years. My grandfather's foresight was our saving grace. His wishes were that he wore a specific t-shirt for is viewing. It read "Do Not Disturb" and had a picture of Dopey from Snow White and the Seven Dwarfs sleeping soundly. It's this kind of dark humor which runs rampant in our family.

The following day, at his service, there were photos of him and the family cycling on the wall behind the pastor. As the pastor said "May we all bow our heads in prayer..." a picture of my grandparents kneeling in prayer flashed behind the pastor. The whole family burst into laughter. We tried to stop laughing, but the best we could do were muffled giggles, with a few outbursts sounding more like sobs.

The eulogy was read by my generation (those of us who thought we could keep ourselves composed). I have problems with public speaking at the best of times, but trying to hold back tears while speaking is not something I was prepared for. At my father's funeral, I had planned on singing "Angel" by Sarah McLachlan, but I couldn't even stop crying long enough to speak. I was such an emotional wreck I had to stay in the "privacy room" at the funeral home through his entire service. The song was played though, from a CD. For my grandfather's funeral I volunteered to sing "Angel" and I managed to keep myself composed until the song was over.

I was thanked by many people, and told that my father would have been proud of me, and what a beautiful voice I have, and the courage it took, etc... But all that mattered to me was that I helped with the grieving process. Mine and others. Since my father passed away, and even before then, I've been singing as a stress relief. It really helps me. I am at peace with my grandparents passing, as they were at peace in the end. But my father was too young, and I still have not found closure.

On a different note, this was the first time I've seen this side of my family since Christmas. Some of them I haven't seen in years. It was hard to watch them adjust to the new me. The broken me. Until my one cousin finally got the hint that it's better to laugh with me and at me than it is to feel sorry for me. She gave me a new nickname: Dropsy.

I explained all of the ins and outs of my issues, and the lack of knowledge among my doctors, and the fact that I'm still awaiting a diagnosis for a pretty serious problem. Over the course of 2 days I was asked by many people how I manage to do it. How I manage to keep my "happy face" on. How I manage to not cry (often), or complain (much), or give up (completely). Truth is, I don't even know... But I feel the breaking point is near.

On yet another different note, I FINALLY finished my hubby's sweater!!!!!! I started it in ... November? I think...

No More Mondays PLEASE!!!

Yesterday, I got to work only to find out (by e-mail) that my Grampa had a heart attack. Add to that the ridiculous stress of Mondays where I work, combined with catching up the employee who was away last week, and the leaky-eyed-rag-doll I've been lately, and it was not a good start. I left work half way through the day to go visit my Grampa in the hospital. He is 2 and a half hours away. Got to the Hospital, went in to see him, and he looks like death. I mean, he looks as though he's got a few more days at best. His doctor says his prognosis is "10 hours to 10 years" which is completely useless as far as information goes. I visited with other family, and went back to the hospital later in the evening to let my Grampa know I'd be back in a couple of days to see him. He was heavily medicated, and in a very deep sleep at this point, so I kissed him on the forehead and told him I loved him. Then I went home.

I may not get another chance at a goodbye.

While he was still lucid, though, before the morphine kicked in, he was the wise-cracking smart Alec he's always been. Said he had the heart attack "while frolicking with a lady on the mountainside." He's in good spirits. He seems to have accepted his fate with no fear, no regrets. My only hope is that he's not in pain for much longer. In the last 4 years, he's lost his youngest son (my dad), and his wife. I'm sure they're waiting for him on the other side, and I'm sure he knows that.


Facing my family, which lately only happens for Christmas, weddings and funerals, with all of my new health issues, was not easy. I had a couple of falls, and I gave EDS brochures to my cousins, and updates on my health. It felt selfish... Talking about me... Like I don't deserve their support with my Grampa in the hospital.

While I'm being selfish... The Clonazepam finally seems to be helping with the twitching. I find lately that it has been significantly reduced in frequency... But when it does happen it hurts more and more (I'm talking severe 9/10 pain levels by the time I get through the day). I'm also having more core stability issues, and I'm still falling A LOT. The Clonazepam-induced depression is not helping me cope with my Grampa's illness, or anything else for that matter. I don't think I can cope with much more. It's like the straw that broke the camels' back. I'm beyond that point, but the universe keeps piling it on. Like Friday... I went to clean my glasses, and they snapped in half, so I'm stuck wearing my contacts DURING ALLERGY SEASON until I can find the time and energy to go have my eyes tested, and pick out new frames, and argue with the sales staff until we reach a mutually beneficial arrangement...

On the up side... My roommate is finally back home, and she said she would cook chicken tacos for supper tonight. No more Pop Tarts and take-out for me!

2 more weeks until I can see if I can try a different medication, or (preferably) get sent for more tests. I need answers, I need solutions, and I need support.

Ouch

This morning, I fell in the shower. It was a cartoon-ish fall, with my feet flying up, and I landed on my right side, dislocating my shoulder in a really weird way... Reduced it under a nice steady stream of steaming hot water... Which I would totally recommend to everybody by the way... It felt almost nice in an "OMG PAIN!!!" sort of way.

So I painstakingly finished my shower, got ready for work... Made it through to just after lunch, and I fell. Another drop attack. While I was standing with a door to my back. I landed with most of my weight on the doorknob, catching the underside of my left shoulder blade, and now, hours later, I am still in pain.

I had a bit of a screaming match with my mother... Then we both had a bit of a cry... And shortly I will be on my way home to recover from a long day's work, so I'm better enough to do it all again tomorrow.

That's all I do lately. Work 7:30-4:30 Monday to Friday, and all the time in between I am recovering.

Geneticist

I saw my geneticist today.

He's baffled.

He has no idea what could possibly be wrong with me now, but he's going to send me for some follow-up blood work. He wants to check the levels of calcium, magnesium, and the a-word molecules produced by the liver that are grabby little bastards which might be stealing my drugs from me. Seriously. Don't look at me like I'm off my rocker...

Albumin... That's what they're called. They're collectors. Sticky ones. They snatch things out of your bloodstream, like calcium, magnesium, prescription drugs (and eventually re-release them into the bloodstream)... And my albumin levels were on the low side of normal a year ago, when my iron was low, and now my albumin levels are higher than the high side of normal, and my iron levels are normal (as of a couple of months ago) and the geneticist thinks that low calcium could possibly be a cause of the sudden twitchiness.

Or it could be post-viral-something-or-other.

He also agrees with me that there is a possibility it could be iron built up in my brain... And he thinks "they" would call us both crazy if he were to request the test necessary to rule it in/out. Apparently it's an odd test to request. I think he said it was the old version of an MRI, or something.

Either way he wants to wait for my follow-up with the Neurologist, and the blood work, and whatever tests the neurologist orders before I have a follow-up with him again.

He also says I should either stop taking the Clonazepam, or go see a psychiatrist. Because I was sitting there crying... Again... But I'll wait until I see the Neurologist lady, and see what she says about drug options.

And finally, for those of you not keeping yourselves updated through my comment section:
Yesterday *(Last Thursday now)* I fell backwards, had the twisty-spine thing (Dystonia? Ataxia? I DON'T F***ING CARE ANYMORE)landed on the front of my left shoulder, and it hurt so bad I couldn't move enough to get the weight off of it. I bawled my eyes out, and screamed a bit of the frustration out. I was at work when this happened, and had to take 15 minutes and 2 smokes to calm down enough, and stop crying enough to get myself an ice pack.

Anti-Anxiety

The Clonazepam is an anti-anxiety, anti-seizure medication. It seems to be a mood disturber of some sort, as I seem to be unreasonably irritable lately. It's like I'm on a VERY short fuse. I snap at everyone, and I don't mean to.

If you are one of my IRL friends, and I've snapped at you recently, I'm sorry.

If you're one of my bloggy friends, and I've left an unpleasant or snippy comment on one of your posts, I'm sorry about that too.

If I cry randomly, like when the mail arrives, or I read a funny part of a book, or just sit there sobbing uncontrollably, no, there's nothing wrong... It's the pills. They've turned me into a weepy, snappy, hormonal-feeling B**** and I can't seem to stop myself from saying hurtful things.

On another note, last weekend, my Hubby gave me a hug. A nice gentle hug, and it dislocated my shoulder and collarbone in such a way that all I could do was stand there and cry. Poor guy felt horrible about it. It felt so painful though, and I couldn't really move for a while. I didn't snap at him though, and I'm thankful for that. I just hugged my left arm between us for a few minutes until I got the crying under control.

I'm seeing my geneticist next week. I should really bring him up to date on everything that's happened since January, but I so want to just send him a link to my blog. "Here, if you care at all, you'll read the whole thing through."

More of the B**** coming out I suppose. I can't seem to be happy. I think at my follow-up appointment with the tourette's/neurologist lady I'll have to ask her to try me on something else. I'm still twitching. It's less frequent, but more severe. I'm in pain 24/7, and I'm depressed.

I had a lovely suicidal thought last night. It seemed perfectly reasonable at the time. I've thought it through though, and I'll be okay. On this front at least.

Can't Win

I've been sleeping too soundly it would seem.

I get so tired from the pain, and I just lay down... Taking forever to actually fall asleep, but once I'm out... I'm OUT.

No moving, tossing, turning...

I wake up in exactly the position I fell asleep in.

I slept in on the weekend, and when I finally woke up, I was so tired from the pain in all my joints that I had to go back to bed.

I almost miss the insomnia.

Last night I fell asleep in an awkward position, and when I woke up I had to spend about 15 minutes putting things back where they're supposed to be before I could even take a shower.

Went to work, and I fell, awkwardly, and dislocated my ankle. After work I went to the mall, almost fell, but caught myself in such a way that I dislocated my knee. When I got home, I was in the bathroom, and I fell out into the hallway. As I'm sitting here typing this, it feels as though my left elbow wants to dislocate, and the two bones in my forearm feel as though they're magnetically charged, and trying to run away from each other.

But on the good side of today, I bought 3 CD's. One to replace the one that snapped in half... One that I've wanted for a while, and Meatloaf: Bat Out of Hell. I used to listen to my dad's record of it, and it was the best sound... But I didn't get any of his record collection when he passed away, and I figured a CD would have to do.

It's raining here, or I would go torment myself by rollerblading. If I only did it on days when I don't hurt, I'd never do it... So I just have to clench my teeth, and wait for my brain to turn off... Almost like meditation, but with enough awareness of my surroundings that I don't steer myself into the river... Or traffic.

Arguing with Doctors

After work yesterday, I decided to go to the doctor to refill my prescription for an inhaler.

Doctor walks in, looks at my chart, "But you don't have asthma."

"I know, but I have allergies, and they affect me in a way which mimics an asthma attack, and the inhaler I had 5 years ago worked for me, and I'd like a new one."

"Let me listen to you breathe." ... "Have you been tested for asthma?"

"Yes, and I don't have it."

"But you want an inhaler? Do your allergies give you rashes? Do you get hives?"

"No rashes, unless the allergens come in contact with my skin. No hives, ever. But when I'm allergic to grass and trees and pollen, and I'm outside in the spring, and I am also exerting myself physically, thus increasing my breathing rate and the number of allergens in my system, I do have allergy induced asthma attacks, and I stop breathing. I had to rush myself to the nearest grocery store, buy some liquid Benadryl, and chug about 1/4 of the bottle, and wait half an hour before I could breathe normally again. So yes, I would like an inhaler."

After the breathing, and my lungs being fine, and no signs of anything else wrong, she looks down and says "Oh, you're a smoker... I should have guessed."

We then argued over the relative health benefits* of smoking 7 cigarettes per day vs. taking a very large amount of over the counter, and prescription drugs to get rid of the migraines I'd had for 7 years prior to when I started smoking. She finally let it drop. I had a doctor tell me, years ago, that I was going to suffer from liver disease by the time I was 25 if I continued taking as many medications for migraines as I had been before I started smoking. I am no longer at risk of imminent liver failure, so I'm happy.

I also had to explain to the doctor, and her shadow, that even though I'm "only 22" and not a doctor that I DO know what I'm talking about, and here is a list of all of the other things wrong with me, and the steps being taken to correct/manage them, and I am currently trying to get into better shape by exercising, which I am more prone to do outdoors, as there are more incentives to continue and push myself. So PLEASE GIVE ME AN INHALER SO I CAN START GETTING HEALTHY.

They were very brisk on their way out the door after handing me my prescription with several refills.

I really need a doctor. A REAL one. One I can make appointments with. One who won't argue with me when I'm right. One I can trust not to give me medications which will send me to the hospital. I think I need to move to Denmark. That would be nice.



*I do not condone, nor do I promote smoking.

Doesn't That Stupid?

(as quoted from my friend)

I went shopping yesterday for a new pair of rollerblades for my mom to buy me for my birthday. (I hope the grammar in that sentence is logical) I found a pair, and started looking for a new pair of wrist guards. I tried some on. That's when it happened.

I injured myself whilst trying on safety equipment.

I dislocated my ring finger knuckle in a way that burst a blood vessel somewhere, and I now have a nifty bruise over most of my finger.

Theme

Keeping up with my theme of "I'm not going to tell myself I can't" I went rollerblading yesterday.

I haven't done this since 2008.

The bike path is in horrendous disrepair, and there is construction. Construction means detours. Detours designed for people on foot, or on bikes. Detours most definitely NOT constructed with ROLLERBLADES in mind. I had to at one point choose between gravel and grass, and at another point I had to cross a VERY busy street, and go down a different VERY busy street, on the street itself, the wrong direction for half a block before there was a paved pathway to get back onto. (Thank goodness there weren't any cars turning right)

The round trip is 18km. I used to be able to get to the halfway point on rollerblades in 24 minutes. That was my record at least. Yesterday, it took me an hour and 45 minutes to get to the halfway point, and just over an hour to get back. Almost 3 hours for the round trip. But I made the whole trip. Only a couple dislocations... My hip went out for a few seconds, but went back in very easily, and my wrists and fingers were having problems saying "in" in my wrist guards. I didn't fall even once, and that's pretty good for me.

The weirdest thing though, is my hips and knees held up pretty well through the whole ordeal, and it's my shoulders that are bothering me today.

Only one incident of allergy-induced asthma attack, and that was as I was in my car, DRIVING home, when I passed someone mowing their lawn. It took me about an hour before I could breathe normally again.

Today, with my truncal/core instability issues (the "twisty" that hospitalized me, which is still present, but to a FAR lesser degree), it felt like I dislocated something in my spine. It went *SNAP!!!* then it went *click* and it hurt like crap, and I almost cried.

As far as the twitching goes, I seem to be doing less of it during the day, and more of it at night, but it's not as bad as it was. I'm almost at my full dose the clonazepam. I will be having a follow-up appointment which should be taking place in about 3 1/2 to 4 more weeks with the movement disorder lady, and a follow-up with my rheumatologist in the middle of June.

I RAN!!!

I ran FAST!

I didn't dislocate anything.

I didn't twist, sprain, or roll anything.

But it only lasted for about 30 seconds each of the 4 times I ran.

My calves hurt, which makes sense.

My upper back and shoulders hurt a LOT, which doesn't make sense.

But I ran.

And it was worth it.


I went to a bush party, and drank. A lot. The drinking lowered my inhibitions, and I decided to run. Not very far. I figured I'd go until I fell, or got my foot stuck in a gopher hole or something. Not so. I ran until my muscles couldn't do it any more, then I walked until I caught my breath, then I ran again. I haven't felt so free in a long time. It's convinced me more than ever that I need to get into shape, and start hiking again. I miss being free. I know it will cost me a lot, in the hours spent getting into shape, and the pain of moving things which would rather lay dormant. It might cost me a few days, months, or even years of being able to function, because I'm wearing down my joints, and stretching out my connective tissues... On the other hand it could grant me a few more days, months, or even years of being able to function, because I'll be in better health, with stronger muscles to keep me moving. It's a risk I have to take. If only to be free for a moment.

Horrible Pills, and Awesome Shoes!

Okay, so I've been on Clonazepam for a week and a half, and I'm currently half way to the dose I'm working up to. So far, I'm extra sleepy. As in, I just had a week off work, and I spent on average 12-14 hours in bed every night. Not so good for the joints.

I've also been falling a lot. Once, I was trying to get to the kitchen to make myself a glass of iced tea, and I fell at least 6 times in a row. Another time, I fell so many times, I gave up on walking, and just crawled. The falling is weird though. Sometimes it feels like a balance issue, or a blood pressure issue, sometimes it feels like a dislocation issue, and sometimes without warning, I'm significantly less vertical than a moment before, with no discernible cause.

A while ago I stumbled on a website for some awesome shoes, and I finally kicked myself in the pants, and bought them. I don't generally spend money on non-essentials for myself (yarn is exempt from this, because I make things for other people with it) and I already spent about $150 on new shoes and expensive insoles at the beginning of winter. Back to the point. I bought myself some Vibram Five Finger shoes. They are the best feeling shoes I've ever had. They allow me to feel more when I'm walking, so it's improving my balance, and co-ordination a bit. They also force you to walk like you would barefoot, which is good. That's how we were born... It's how we evolved... BAREFOOT. So yeah, that's me for now.

Oh, I also bought a back roads map of Alberta, because I am determined to go hiking this summer. DETERMINED. I will take braces, and ice packs, and heat stickies, and Benadryl, and bandages, and everything else I could possibly imagine needing. And I will carry it in a properly fitted backpack with hip straps to supplement the shoulder straps. And I WILL do it. (Right now I'm mentally sticking my tongue out at EDS... Mocking it the way it's mocked me my whole life)

Shiny New Bottle of Pills

I saw a spiffy new doctor today. She specializes in Tourette Syndrome, but is also a neurologist, and she knows more than a thing or two about movement disorders! Yay!

Based on my history, I do NOT have Tourette Syndome.

The preliminary diagnosis is either Myoclonus, or Dystonia.

Good news: They both (generally) respond well to Clonazepam, which is what I have been prescribed. I am starting on a very low dose, and over 3 weeks, I'll (hopefully) be up to a dose that will do some good. She will be setting up a follow-up appointment with me in about 6 weeks to see if it's working, or if we need to seek alternative treatment options.

While I was there, she also said she arranged for me to be tested for Epilepsy, to see if the Myoclonus (if that's what it is) is Juvenile Myoclonic Epilepsy.

She also believes that the diagnosis of Truncal Ataxia was wrong, and that it was probably generalized Dystonia which sent me to the hospital. Speaking of which, she told me that would have been more "normal" had I been prescribed dopamine inhibitors instead of a dopamine agonist. Just another thing that I don't do "normally." I seem to have the polar opposite reaction to a lot of things.

Ooh... Just read up on the side effects... They include "paradoxical reactions" so this time if I have the opposite reaction to the drugs, it will at least be expected. I think this bodes well for me.

P.S. Spell check is absolutely useless for medical terminology.

Stress Hurts

This week, I am supposed to be catching up on all of my work, and getting ahead a bit, because I'm supposed to be taking next week off. This week... All three days so far, the other lady in the office has been off sick. So I'm doing as much of her job as I know how to do, as well as all of my job, and a little bit extra, so I'm REALLY STRESSED OUT.

Stress makes me twitch more.

Twitching more makes me dislocate more.

Dislocating more makes me fall down more.

My pain level has been hovering around a 6-9 out of ten since Friday last week.

It's horrible. I can't do anything without tears welling up. I can't get comfortable at all. And it's mostly in my mid-lower back, which usually doesn't hurt at all. It's really weird, because I've been feeling really unstable in my back for the last week or so, almost like the Truncal Ataxia is coming back. I am anxiously awaiting my appointment with the Movement Disorder Clinic this Friday. Two more days until I see someone who might be able to give me answers.

So, at 22 years old, having been diagnosed with EDS almost 9 years ago, and showing signs of it since I was 7... I still haven't managed to find anything to relieve the pain, while still being functional. Yesterday, as soon as I got home, I drugged myself up and laid down with a heat pack alternating between my left shoulder, and 3 different spots on my back. I reheated the pack about 4 times, and I had to re-drug myself right before bed, because it was starting to wear off.

I managed to sleep through my alarm, and wake up at 7:29 this morning. I'm supposed to open at work, at 7:30... With the other lady sick, and the rest of the office staff living an hour out of town with horrible road conditions, I was still the first person at work at 7:40... I was amazed... In 11 minutes I went from horizontal in my bed to sitting at my desk with the computer turned on, and coffee mug in hand. It's a good thing I live about 20 blocks from work.

I bought new crochet hooks... They are awesome... They are for Tunisian/Afghan/Tricot crochet. I bought 2 sets, one for me, and one for my gramma. My co-worker borrowed one, and now she's buying a set for herself, and a set for her grand-daughter. It's like I'm starting a revolution! The only problem is, they aren't sold anywhere in Canada, so we've had to order them from Hong Kong via eBay.

Nothing much else is exciting, except I'm still considering wearing a corset to work to see if that will help any with the pain/stability issue.

Skin

Friday night, I was getting ready to go out. I had my nice sexy black skirt, with my nice black one-shoulder shirt, and my corset laced up tightly; all I had left to put on were my boots. My boots are knee high shiny black death traps. But they're ever so pretty, and even with the 6 inch heel, I still don't quite come up to my hubby's shoulder. I was about half way done zipping up the second boot, (which is tricky enough at the best of times, but made even more difficult with the addition of the corset) when I noticed I couldn't grip the zipper pull.

The smart thing to do in this situation is to stop, assess the problem, then continue.

That's not what I did.

I continued pulling the zipper pull, wondering why I couldn't grip it, until it was finally done all the way up. Then I stopped, looked at my finger, and realised I had torn a triangle-shaped, rather large chunk of skin out of my finger. It didn't hurt. At all. It was really strange. But quite disgusting at the same time.

I'm assuming this would fall under the category of "EDS causes skin to tear easily" but it's the first time I've ever done anything remotely close to that. It's looking really gross, so I'm keeping it bandaged up until it looks like it's starting to heal. It didn't even bleed though. Odd.

On another note... I was very excited for this past weekend, because I was going to a comic/sci-fi convention, and Leonard Nimoy was there. I wanted to ask him a question (which I would have if it didn't cost so much money to get within shouting distance).

You see... I posses a very rare talent. So far as I know, I am the only person in the world that can do it... I can make the Vulcan hand symbol (like Spock from Star Trek) ... But I can do it with both hands... and here's the exciting part... I can do it with both FEET too!!!

All I wanted to know from Mr. Nimoy, was if he'd ever met anybody else who could.

Everyone I know in real life thought I was completely nuts for wanting to ask him that, and also extraordinarily odd for knowing I possessed that particular talent.

APPOINTMENT! YAY!

Um... I'm a bit excited!

I received a phone call today from a wonderfully pleasant lady who works at the movement disorder clinic.

She gave me an appointment for 10:30am May 31st (which she so kindly booted somebody else out of). She told me she would go over my file with the doctor to see if she could get me in any sooner, as the doctor will be on call for the next few weeks. About an hour later I got another call. She has rescheduled me for May 7th at 2:30pm. (Which is WAY better than August, which is when normal appontments are being scheduled for)

Three more weeks.

I'll have my answer in three more weeks. (Happy Dance!)

Of course, as I had already booked my vacation for that week, and I had planned on leaving the province to go camping, I may have to rebook my holidays. Oh well, I've already pushed them back 3 weeks... What's another week? Especially if I can get a diagnosis out of it?

My pain levels are being stupid... Anywhere from a 2-3 on weekends when I am actually able to relax, to a 9-10 on weekday evenings after a full day of NOT RELAXING. It got so bad on Wednesday, Thursday, and Friday last week, I was reduced to a whimpering puddle of goo.

Friday night I went out to karaoke with my hubby, our roommate, my best friend, and a couple of her friends. I was fine for most of it, then I started twitching, and I dislocated my shoulder, reduced it and dislocated it again, about 4 times in the course of 30 seconds. The last time it refused to go back in, so I had to put up with a lack of blood flow causing numbness, and a pinched nerve causing complete sensory loss and/or excruciating pain, and an inability to move my arm. This went on until I got home, smoked my medicine, and went to bed.

My shoulder played a fun trick on me on Thursday too. It felt like it was almost in the right place, but not quite... So I poked it, prodded it, massaged it, and finally got it to go back where it should be. During all of this, the bones ground together, the connective tissues went clicking against the bones, the muscles spasmed, and I found that I have a rather large squishy spot, which on my other shoulder seems to be filled with... something... Muscles? Tendons? Ligaments? I don't know... Tissues of some sort. But on my bad shoulder, it just feels like jello.

Also... I dislocated/subluxed something in my coccyx last night... Don't reach for your iced tea without first setting down your book... Apparently, it makes all the difference.

Stability vs. Stability...

Since I've stopped the medication, I've noticed a marked decrease in stability, as well as a miraculous increase in stability... Confused yet?

Me too...

While I was on the pills, I noticed that my joints were more stable... as in they weren't dislocating as frequently.

When it got bad, and I was in the hospital, I had truncal instability, as well as a lot of "shimmying." It was horrible, but I wasn't dislocating anything... I just couldn't stand still, or stand straight... No balance, relearning how to walk with every step, etc.

When I was first off the pills, I still wasn't dislocating like I usually do, and the twitching wasn't so bad, but the longer I'm off them the worse the twitching gets, and the more unstable my joints are... I'm dislocating everything all the time again. Add the dislocations to the once-again-violent twitching, and I'm in a world of pain.

I don't know what's worse...

Not being able to walk, while keeping my joints in place, and having pain levels around 3-4 out of 10... Or being able to walk, while continuously dislocating everything, with my pain around 6-7 out of 10.

I just want to move only when I want to. And only in the direction I intend to move in... Without dislocating things... Not being in pain would be nice too.

I hate how the choices are between bad and different bad...

Right now my hips hurt so much... It feels like someone hit me with a sledgehammer... They keep subluxing. And my shoulders keep dislocating from the twitching, and I still have no balance... But I know where my feet are, and apparently that's enough.

I'm miserable... Like depressed-miserable... I just want to curl up in a hole.

Edit:
Upon further thought, another thing I prefer about drug-induced truncal ataxia is the fact that it's predictable; I knew I was going to have to teach myself how to walk every time I stood up, I knew I would not be able to stand still... Whereas the twitching comes and goes... I can be fine for up to a couple of hours, and then BAM! I'll throw a glass of water across the room... Or hit myself hard enough in the face with a file/stapler/ruler/pen/coffee cup/phone at work that I dislocate my jaw...

One Day

One day is all I had...

One day I was normal...

One day... I was just a girl...

I walked like a girl...

I played like a girl...

I forgot I was "sick"...

One day was all I got...

I've had to grow up again, but I am grateful...

For my One Day...

Truncal Ataxia

It got so bad that I had my hubby take me to the emergency department.

The neurologists, doctors, and nursing staff thought I was an interesting case.

One of the nurses said I was scary... That I'm 22, otherwise healthy, and I presented with such a debilitating case, which came on so suddenly.

What caused the truncal ataxia? The medication I was on to relieve the upper chest/shoulder spasms. Apparently I am extremely sensitive to dopamine... The main ingredient in the medication.

So, I've been admitted to the hospital, and they've run numerous blood tests, and looked at my MRI results from before.

There was apparently an anomaly on the MRI, and I'm waiting to speak to the neurologist to ask what it is. Apparently it's in the wrong place to be causing any type of movement disorder.

The neurologist, after weaning me somewhat off the medication, and finding that I am almost miraculously cured, jokingly said that he should put me back on the meds and videotape me, because I had a "perfect presentation of truncal ataxia, and it would be beneficial to have video of it."

Once again I was the object of much showing off. I had, I believe, 2 neurologists, 3 med students, 2 MD's, and numerous nurses looking at me, checking my reflexes, asking me questions, and watching with astonishment as I jerkily; haltingly took a few unsteady steps. They also had me put my arms in front of me like a zombie, and close my eyes... Only to catch me a half a second later, as it became obvious that I had NO BALANCE WHATSOEVER WITH MY EYES CLOSED.

So far, since having my dose cut in half, the upper chest/shoulder spasms have not come back, and the neurologist would like to see them before I am discharged. I seem to be at a happy medium right now, except for some continuing instability and balance issues.

So I still have no diagnosis for my original problem, but the worst seems to be over, and that's a start.

New Symptom

On top of the shaky/twitchy/spastic tremor-type-things... I am now getting some spine-twisting-shaky motion, and randomly walking/standing on my toes. My feet also twist to point in and out, instead of straight like usual.

What it's looking more and more like is Ataxia. Which type, I don't know, there are 3 types and all are associated with MS.

I'm afraid.

I just want some answers.

What's Next?

I fell between 15 and 20 times yesterday. (and 4 times today already, several the day before yesterday, a few on Tuesday, and twice last Friday)

Why?

Because my hips and knees are SOOOO loose that the twitch/spasm/tremors are causing me to lose my balance and dislocate them.

I'll be standing, when I'm suddenly attacked by LOTS OF SHAKING (like it's my own personal earthquake) and BAM! there goes my knee(s) and/or hip(s).

I fall quite gracefully.

Really... I fell so many times, and it mostly went completely unnoticed. I am a master of landing.

The upside? I now have some sort of connection for my bad days with twitching. They correlate completely with my awful days for joint laxity; which in turn seem to be affected by my hormones, which is absolutely fun! I get to bleed, be crampy, bloaty, cranky, irritable, SORE, dislocatey and twitchy at EXACTLY THE SAME TIME.

I also found out yesterday that my cousin has a brain tumour, and she went for a biopsy yesterday to check if it's cancerous or not. It's in an inoperable part of her brain. So lots of anxiety and waiting there, too.

In times like these, I really just want to curl up and watch a 'fluffy' movie. One with a nice, pleasant story, and a lovely happy ending. With kittens, or something. Whilst eating a bowl of chocolate ice cream...

Google is P*SSING ME OFF! In a good-ish way?

So I'm trying to find information linking EDS to the spasms/twitching/tremors that I'm experiencing.

I type "ehlers danlos syndrome twitching" and the first result that pops up is... ME... MY BLOG... This one... As nice as that is, it doesn't bloody well help me. I'm apparently the best source of information on it according to google, but I'm entirely useless to myself.

So I tried "ehlers danlos syndrome tremors" and the first result is not even close to what I'm looking for, it's talking about them in an unrelated way, and the second response is again, me.

Third time's the charm? Let's try: "ehlers danlos syndrome spasms" the first result for that one is a blog by a lady that suffered leg spasms- not entirely helpful- not what I'm dealing with. The second result is entirely unhelpful information for massage therapists. The third result is me- again.

I'm entirely frustrated at this point.

I have however found that what I'm dealing with appears to be tremors. Possible types of tremors include: dystonic tremors, cerebellar (intention) tremors, or psychogenic tremors.

Again... entirely unhelpful, at least without a diagnosis.

At this point the most likely diagnosis based on the information I can find would be MS.

This is not a comforting thought.


On a lighter note, I have been baking... I made banana bread muffins, macaroons and brownies on the weekend. I made more banana bread muffins last night, and a really good beef stew. And I've been crocheting cute little dresses which should hopefully fit my youngest niece by summer.

It makes me feel like a grandma. I'm not even a mom.

Edit: Since posting this, I am the first result on all three of the things I typed into google. Aren't I the smart one?

Neurologist

Finally, after days of "I'm sorry, the person you need to speak to is unavailable," I've been given an appointment date for a neurologist.

On the second of November, 2010.

I was triaged as "high priority" and this is the soonest appointment they could give me.

When I spoke to her (the appointment co-ordinator), the only thing she could recommend to get in any sooner, would be to go out of city. I've told her that was fine, and she's looking into it.

I'm currently on medication which is costing me over $100.00 per month (closer to $150.00 with the dose I'm up to), which was prescribed to treat my symptoms. I would like to know what the heck is wrong with me before I spend the over $1300.00 on medication which may or may not be necessary. And what if it's something serious? What if I could really benefit from being diagnosed early?

I'm so tired of "What ifs."

Is the medication helping? Yes. Is it a good idea to be on these meds if there's a problem that can be fixed instead of just treated? No. Especially not if I'm ever going to have children. Which is looking less and less likely. Dammit.

Sex Toys & Bendy People!!!

Odd title, but you have been warned.

Last night, I went to my not-so-local adult store to purchase a new vibrator. As I've recently moved, and my husband packed all of our bedroom toys, I have no idea where mine is, and it's in need of replacing anyway.

When I got to the till with my purchases, the small-talk began with the wonderfully hilarious man behind the counter. We talked for a good five minutes, and eventually (I can't remember why) I told him "Last night I dislocated my hip, my knee, my ankle, my shoulder, and my jaw."

He looks at me kinda funny, then "You were playing a sport of some kind, right? Please tell me that wasn't from sex."

"That was from sex" I told him, with a blush in my cheeks.

He looks at me funnier still, tells me my total, and turns around to rummage in a cabinet as the debit machine is doing its thing.

He hands me a card that says '$10.00 off your next purchase', and tells me, "It only takes 3 dislocations to get a discount out of me," awkward pause... "play safe."

I left the store in near hysterics, with a grin on my face.

If any of you have similar-type stories, and aren't shy to admit it, it may be a great way to get a discount from an adult store, even though you know they'll be picturing the kinds of positions necessary for dislocations to take place.

Have a nice day, and a safe night!

Test Results

I phoned my geneticist yesterday, to ask for the blood test results and the MRI results that he had ordered.

Everything was normal.

YAY!

That means no Celiac, no Chiari, as well as no all-the-other-stuff-I've-already-gotten-results-for from the other doctor.

I asked if the MRI had been done on my whole brain and C-spine, as opposed to just the areas concerning Chiari, and it had. There were no incidental findings; it looks like my hubby can stop worrying about me having a brain tumor.

As soon as I find out which neurologist I will be seeing, I'm to call my geneticist so he can forward the MRI results. This should hopefully speed up the process.

Moving went pretty well, all things considered. I only had one major dislocation event, and it was immediately after the last box was moved into the new place (after everything was cleaned too). I was opening a celebratory black cherry cider, and my hip gave out. I hit the floor gracefully. You believe me right?

Incidental moving-related-ish injuries: 5 bruises on my left knee, one on my left forearm, one on my right shoulder; cracking skin on my knuckles from cleaning (didn't wear rubber gloves 'cuz I'm S-M-R-T), and last but not least, one dog bite to my left calf.

I've thrown away a lot of useless, sentimental items which belonged to my dad. It would have been his birthday on Friday. I was throwing away his stuff on his birthday. I shed some tears.

P.S. I'm now taking the maximum dose of the Parkinson's pills that my doctor will allow, and I'm still experiencing the twitching, spasming, and tremors.

Relief and Frustration

I saw my GP yesterday to discuss my blood test results. According to him: "By the looks of this blood work, you're healthy." As I'm sitting there *twitch* looking at him *twitch* and wondering what else is new... *twitch.*

The only thing on my blood work that was not in the "normal" range was my platelet levels; they were slightly below normal. My iron is fine, my kidneys are fine, my liver is fine, my thyroid is fine...

Apparently, I'm FINE!!! Isn't that just wonderful???

*TWITCH*

*SPASM*

"So, doc? *TWITCH* What's *TWITCH* wrong with me?" As I'm ever so carefully trying to relocate my shoulder.

"I have no idea," he replies, "I'll send you to a neurologist; the receptionist will call you with your appointment time."

Lovely... More waiting, more tests, more doctors...

Oh, and I'm moving this week. I'm completely useless, as I forgot to take 2 of my pills on Sunday, and I have been as bad as I was before the pills since then. It's really hard to do anything at all. I was going to wash the dishes last night, so they could be packed, but I could barely even wipe down the counter. I really don't want to be throwing plates around the house, as I'm attempting to pack and clean.

I was talking to my husband last night, and he asked what my plans were. I told him "I *twitch* was planning *twitch* to *twitch Twitch TWITCH SPASM!!!!* wash the *twitch* dishes." At this point I had tears in my eyes, partly from the pain, and partly from the frustration. He looked at me, standing there, and gave me a hug. I almost started crying. I don't want to be pitied, especially by my own husband.

I'm so frustrated, I want to run, scream, and hit things. I want to find someone to blame, and kick them in the shins. Then step on their toes. With high heels on.

When I have my twitchy spasms while I'm speaking, they force the air out of my lungs to make it sound like I have a stutter. So that's fun too.

I'm still waiting to hear from my geneticist about the blood work he sent me for, as well as the brain scan results. Maybe I should give his office a call to see what's going on...

P.S. The doctor seemed quite confident that my twitching/spasms/tremors are hereditary/genetic, but that they have absolutely nothing to do with EDS.

Related?

I'm not sure if either of my new un-problems are related to the medication I'm on.

First, I've been without my ankle brace for three days now, and it only hurts if it bends past "normal" range of motion, or if I go too long without moving it.

Second, I've been feeling more stable, except for my left shoulder, and that's because I'm still twitch-spasming it out of place frequently.

I'm still tired ALL THE TIME.

My memory is mashed potatoes and swiss cheese. Mashed potatoes because everything seems jumbled together, and swiss cheese because there seem to be holes in my memory, and things seem to get stuck (like songs that play over and over, and OVER until you want to find the singer and kick him in the shins).

On another note, my walk-in doctor has had my blood test results for over a week, and he didn't think it was prudent to call me. So I called him, and set up an appointment next Tuesday to discuss the results. I think I want to kick him in the shins too.

Oh, and GO CANADA!!! We don't seem to be sucking at the Olympics! Yay us!

Waiting

I'm still waiting for the results of my 2 sets of blood tests, and my MRI.

I did have to go back to the GP for a refill of the Parkinson's pills. At that time he also told me to increase my dose from 3 pills a day to 4 pills a day. My spasms are coming back, even with the increased dose. I can't imagine what I would be like without the medication.

I am tired all the time now, like I could easily lay down and sleep at any time of day, regardless of how much sleep I've had the night before.

I can't seem to keep my thoughts straight.

My muscles feel stiff and fatigued... More fun side-effects.

And I now have a fluttery feeling twitch in my right eye.

I would really like to know what's wrong with me, so I can start treating the disease, not the symptoms.

Doctor, doctor, give me the news...

...

So, anyway... I've been on the Parkinson's medication since Tuesday night, and today has been mostly spasm free. My pain levels have dropped significantly, since I'm no longer dislocating and subluxing every 2 seconds, and the side effects of taking the meds have started to wear off.

YAY!

In other news... On January 19th I had my appointment with my geneticist. He put in a request for an MRI to check for a Chiari malformation. He told me not to be surprised if there was a 6-8 month wait before I got it. I got a call today saying there had been a cancellation, and they can do the MRI on Monday!

YAY!

So I would guess within the next 3 weeks, I should have a diagnosis of some sort, and a lot more information under my belt (if all my test results make it to the people that need to see them, and I get called to discuss them, that is...).



This is my best friend's baby, snuggling up in one of the blankets I made for her. Isn't she precious?

Parkinson's Pills

The Parkinson's medication seems to be helping... Which is really nice (albeit somewhat scary). I take one pill every 8 hours, so I've taken 2 so far. Next one at 2pm. I'm still getting the spasms, but they don't feel nearly as powerful, and they are more spread out (time-wise).

I don't know if it's the pills, or the pain from so many spasms, dislocations, and subluxes, but I didn't sleep more than an hour last night.

My left shoulder, which has been hit the hardest by the dislocations and spasms, feels like it's on fire. I just want to go lay down in a snow bank.

I'm not sure if the dose is too small, or if I haven't been on the pills long enough, but the one I took at 6am started to wear off around 10:30am.

I am so EXHAUSTED. I feel like I ran a marathon, on my hands...

*SPASM* ... *SPASM* ... *SPASM!!!!!*

Since early last week, I have been experiencing upper chest/shoulder spasms with increasing frequency. I've had them once or twice a day for several years, but in the last week it has gotten progressively worse, until yesterday the spasms were occurring no more than 10 minutes apart.

It is very difficult to do anything, and I don't know what is causing them. They seem to occur more often, and more severely when I am trying to use both of my hands simultaneously. They are very painful, they are causing my shoulders to sublux, and they are making it somewhat difficult to breathe normally.

Preliminary research on the internet suggests they could be caused by TSH imbalance, iron deficiency, renal failure, or diabetes. I am currently awaiting blood test results which could possibly rule out 3 of those.

I am once again wondering "Why me?" What else could possibly go wrong?

I shall be going to the walk-in clinic this afternoon, once I get off work, and possibly call my chiropractor for an appointment. Maybe even a masseuse. Anything that could possibly help would be nice.

I am exhausted.

You may call me "Spaz," I won't mind.

Any and all advice would be greatly appreciated.

On a lighter note, my best friend had her second baby, a healthy little girl on Thursday, and she is so cute, and little (a bit over 7 pounds). I made her 2 little blankets, and her big brother (13 months) loves them!

Edit* For updates, I occasionally comment on my own posts.

Update: After work, I went to the doctor, and he prescribed a medication for Parkinson's disease, as well as sending me for more blood tests.

Faith in the System

Mine has been somewhat restored!

Today was my annual appointment with my geneticist. He listened to my concerns, he agreed that I was NOT a hypochondriac, and he had a light bulb moment of insight as to what may be barring my path with TTC.

He is sending me for an MRI to check if I have Chiari, blood work to check my kidney function, iron levels (I appear to still be anemic), thyroid levels, and to see if I have Celiac's disease.

I will be scheduled for a follow-up appointment in 6 months, or as soon as the MRI is done, whichever comes first.

He also said he'd send me for a skin biopsy if my previously diagnosed "nickel allergy" rash doesn't go away by the next time I see him. (So far it's been "treated" with steroids, anti-fungals, antibiotics, antihistamines, and something else...? Most of which had no effect, and the steroids made it worse.)

So the "light bulb moment" was that my kidneys may not be allowing my body to absorb (enough of) the iron I'm taking, which would, combined with other things, render me infertile to some degree.

I think I need a tailor...

My body feels like it doesn't fit. Things feel like they aren't where they should be, or that they shouldn't be where they are.

I'm feeling less and less co-ordinated, and more and more off balance.

I don't know where I am.

I can look at my hands, tell them to pick up a cup of coffee, and watch them wander aimlessly for a while, before finally grasping it. Then there's the journey from the table/desk to my mouth... Then tilting it just enough to get the coffee in my mouth, without spilling it all over myself.

I feel like a toddler. Independent, confident in my ability to do everything by myself. Sure of my feet. But as an in independent onlooker, people can see that I can't do it all myself. I can't drink from a big kid cup, or walk without stumbling into things, unless I support myself against a wall, or counter.

I was supposed to be past this stage in my life. I already mastered the art of walking, graduated from a sippy cup.

Where will I be in 10 years? Will I have to go back to Velcro shoes? It doesn't seem too far-fetched.

Pretty Hats

It's Delurker day!!! If you're a lurker... Come out, come out wherever you are! ;) Tell me something interesting about you! Or just say hi. Or even "moo" for all I care...

On with the post:

So, I love how blogger randomly throws pictures wherever it feels like throwing them, regardless of how you upload them, which order, etc... But I do have photos, and they are uploaded, and they're hats! Yay!

The first one is my best friend's son's hat, and it's brightly colored camouflage, and it's too big for him, but SOOOOO cute when he's wearing it.




The second one, purple with the flower was meant to be for my niece, but it's adult size, and I don't know anyone who would wear it...
The orange, pink, green, and yellow one was for the gift exchange at my dad's family's Christmas. It was labeled as a Gag/Girl gift, and was well received.

The purple, purple, blue and green one went to my best friend for Christmas, as it is much warmer than the one I made her for her birthday.

This one is dark blue, and grey, with a grey edging. In the right light it looks like it's blue and silver. It went to one of the ladies in my hat club, and she LOVES it. (YAY ME!)

My current projects include searching for yarn to make my hubby's sweater, and crocheting 2 baby blankets for little ones set to arrive sometime this month. One blanket is for a boy, and it will be green and blue wavy stripes. The other one is for a girl, and it will also be wavy stripes, but they will be alternating between solid orange, and a confetti looking white/orange/white/green/white/blue yarn.

EDS update: Between under-sleeping, and not having any energy, and oversleeping to wake up with multiple dislocations, I have managed to be late for work twice this week. I think it's the hormones again... Seems to be worse (A LOT WORSE) on the days just after I ovulate (tmi?).

Edit: The more I try to fix the placement of the pictures and text, the worse it seems to be getting, so what it looks like now is about the best you'll get. Sorry.