Ehlers-Danlos Syndrome-Deal With It

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

2012-01-27T10:24:00.000-07:00

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

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

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

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

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

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

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

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

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

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

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

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

Cold Weather Sucks

2012-01-19T13:08:00.000-07:00

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

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

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

Ridiculous amounts of pain.

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

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

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

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

Research, and Prolotherapy

2012-01-16T14:48:00.000-07:00

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

That's been my experience at least.

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

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

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

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

Two Weeks Off

2012-01-05T13:08:00.000-07:00

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

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

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

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

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

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

I Found an Interesting Article

2011-12-12T15:39:00.001-07:00

Joint Hypermobility and Joint Hypermobility Syndrome By Alan G. Pocinki, MD, PLLC

Once I read this, a few things clicked into place for me, diagnosis-wise.

It would appear that the digestion issues I've been experiencing could be due to high levels of adrenaline. The adrenaline cycle is a vicious one though.

"Many of the autonomic nervous system problems associated with hypermobility are characterized by an "over-response" to physical and emotional stresses, which often leads to fluctuations in heart rate and blood pressure, as well as digestive and respiratory symptoms. Sickness, pain, emotional stress, and even fatigue itself can raise adrenaline levels, and acute stresses can trigger adrenaline surges, leaving you jittery, anxious and even more exhausted. Worse, such surges can trigger an excessive counter-response, causing nausea, sweating, lightheadedness, diarrhea, and of course, even more fatigue. Even sensory stimuli, such as bright lights or loud noises, can trigger an exaggerated or over-response, causing sensitivity to light and sound."

"...when hypermobile people try to fall asleep, the stimulating effect of their extra adrenaline may keep them awake. If they are able to fall asleep, they may continue to make too much adrenaline overnight, giving them a shallow, dream-filled sleep, so that they wake feeling unrefreshed. Pain further stimulates adrenaline, making restful sleep even more difficult. When studied in the sleep lab, they often have a relative and sometimes complete lack of deep sleep, and/or increased number of sleep-disrupting "arousals." Poor sleep can cause irritability and fatigue, which in turn can trigger more adrenaline (to try to overcome the fatigue), which in turn can make sleep worse. This vicious cycle can eventually cause serious disability."

So, the fatigue, adrenaline, pain, adrenaline, fatigue cycle continues unabated until you burn out, or potentially damage your adrenal glands. It's a positive feedback loop (if you can remember high school chemistry), and the worse it is, the worse it will continue to get, until it is interrupted. Most doctors would first recommend changes to diet, exercise, and sleep patterns to see if that would help balance things out. Since a lot of EDSers have problems when they change their diet and exercise, and are mostly unable to get restful sleep, the next course of action would be some sort of beta blocker, in combination with a nighttime pain reliever, which will help to break the cycle starting with adrenaline, which should then allow for restful sleep, leaving you in less pain when you wake refreshed.

Now all of this may sound wonderful; start me on some beta blockers, and I should be fine, right? The hardest part will be to find a doctor willing to prescribe them to me. Also, finding a doctor willing to diagnose me with POTS (tilt table test). And have an upright MRI of my C-spine (to conclusively check for Chiari).

Ugh...

I can see the silver lining, but it is surrounding a very large, dark and ominous cloud.

My Doctor May or May Not Have Been Right...

2011-11-28T14:05:00.000-07:00

My wonderful doctor said that 2 of my symptoms have nothing to do with the other symptom, which may or may not be due to an unidentified illness which I may or may not have; but here's a prescription for one of the symptoms. And the best part? It's only $70.00 for a month's supply! (I sweet-talked my favorite pharmacist into giving me a free trial sample [which he sweet-talked my doctor out of] to see if it would even help before I paid for the full prescription though).

So the symptom I was medicated for was excess acid production. He prescribed a really strong antacid, and told me that it would stop the pain when I ate. He was right about that one.

I still couldn't eat anything though, because of my other two symptoms; lack of appetite, and nausea. But luckily, I've been self-medicating for those two for quite a while. I frequently have to ingest marijuana for my all over body pain, and guess what? It gives you the munchies. Which sucks sometimes, but when you've been too nauseous to eat, and eating causes pain, and you have no appetite, smoking some MJ can really be beneficial. It's the only way I was able to eat anything last week.

After only 2 days on the antacid, the severe pain immediately after eating went away. Three days later, I found my appetite, and the nausea settled down. Now I'm back to having no appetite, but the nausea and pain are still gone, so I can force myself to eat at least.

This was a really weird illness... It felt like having a stomach flu, except I didn't have the fever, or excess body aches that would come along with it.

My body is confusing.

Still waiting for that G.I. appointment. Only about a year away now. Maybe as few as 4 or 5 months. So, hopefully I'll be able to find out if I have one major gastrointestinal issue, or if I have a couple different things going on, but hopefully the professional will have some answers... However unlikely it seems...

Tummy says "GRRRRRR"

2011-11-22T11:07:00.000-07:00

My stupid tummy has decided that the only thing it wants is coffee.
And peanuts, which I'm allergic to.

And egg nog.

But everything else I put into my tummy just hurts, and makes me nauseous. Including ensure.

I've eaten less since Thursday last week than I would usually eat in a day. Which is already less than what "normal" people eat in a day. The coffee seems to be keeping me alive-ish for now, and I have been force-feeding myself every day, because apparently the people in my life care about me enough to want me to eat (even when it causes excruciating pain and nausea).

I tried to go to the doctor after work yesterday, and they recently changed their hours, only accepting walk-in patients until 5pm instead of 9pm. Which means, that by the time I get off work at 4:30, they've filled the spots, and are no longer accepting any more walk-ins. Let alone 5 minutes later when I arrive at the doctor's office.

Being impatient as I am, I proceeded to go to the next nearest walk-in clinic, which also just changed their hours to 5pm, and were already fully booked for the rest of the day.

I'll be taking some time this morning to go to the doctor.

I am not feeling any kind of hope that the doctor will actually DO SOMETHING. I'm pretty sure I'll just get the whole "there's nothing wrong with you, quit whining" that I've become accustomed to.

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

Ooooh... I just went to the doctor's office, which has posted walk-in hours from 9:30 to 5:00. There's no doctor in the office. I signed in at 10:30. They said the doctor would be in in about 45 minutes. 5 minutes later they tell me the doctor won't be in until 1:15, as he's locked himself out of his house.

But, I do have an appointment now for 1:30.

Optometrist

2011-11-04T09:15:00.000-06:00

Over the last few weeks, I've been having problems with my left eye, such as blurry vision, eyelid twitching, dryness, increased light sensitivity, and such. It got to the point where I was concerned there might be a real problem, so I made an appointment with an optometrist.

He was a cute young guy, and actually knew what I was talking about when I told him I have EDS. It was truly refreshing. Due to the EDS, he recommended a full work-up, and dilated my pupils, and did the yellow dye drops to check for scratches, and shone really bright lights into my eyes at all angles, and then again, because he thought he might have seen something.

Apparently the puff of air they blow in your eye to check for pressure showed that I have a bit higher pressure than they like to see, and he wants me to come back in the next few weeks for another test.

The test he wants me to take is a baseline test to check for the development of glaucoma. So that's fun. I do not have glaucoma at present, but I do apparently have enough of a warning sign that he wants a baseline test, to check for any progressive, yet slow, changes.

The blurriness is apparently due to a clogged tear duct, and I should add more omega-3's to my diet, and use eye drops. The other thing he found that could be attributing to the dryness and blurriness is that my left eye doesn't close all the way when I blink. Kinda weird.

Cold Season, As Usual

2011-10-24T12:38:00.000-06:00

I've been sick for about 3 weeks. Not anything too bad, but energy-sucking nonetheless. It's been cold-type body aches, chest tightness, coughing, can't get to seep, etc. and I've had enough of it.

I would prefer the types of colds I got as a kid. The ones where you're really sick for 3-5 days, you take those days off, lay in bed, eat some soup, then you feel better. Not this really mild, but horribly exhausting blah that I've been getting the last few years.

Also, I have a new twitch in my left eye, which seems to have developed along with pretty bad light sensitivity and dryness.

It turns out that my suspected dislocated rib/sternum, was in fact 2 dislocated ribs at the sternum. They have since gone back in, and popped back out, and gone back in again. The shoulder twitching is not getting better, and my joints seem to be getting looser and looser.

I've been dislocating both shoulders every night while I'm asleep, along with my left collar bone, ribs at my sternum, and at my spine, both hips, jaw... There is no position I can sleep in without dislocating something. I've been piling my bed with pillows, and comforters, and blankets, and nothing seems to help. Even going to bed heavily medicated doesn't do it. It feels like so many things would be so much better if I could just sleep.

I spent my entire allotment of spoons this weekend on making stew and cleaning the dishes. The rest of the time I spent flopping around like a fish out of water trying to get comfortable, and snoozing on and off.

It's time to start mattress shopping. I need to go lay on about 100 different mattresses for a bit to see if aything is comfortable.

I'm a Dumb@$$

2011-10-04T11:25:00.000-06:00

Just thought you all should know, my spiffy toe shoes made me cocky, and I had the brilliant idea that I could run... Turns out, I can run. I just shouldn't run. Ever again. Because holymotherofgod it hurts like hell.

So I ran on Sunday night, about half a block, because I was on my way to work to supervise an after-hours lot move. I was doing the nice thing, having a vehicle re-parked so it wouldn't block our gate on Monday morning when all the cars come in. My hubby had our car, so I had to walk to work, and it took me longer than I thought it would, so when I was about 3 blocks away, I decided to run for it, because I didn't want the tow truck to leave without moving the vehicle.

You know, the old saying "no good deed goes unpunished," is pretty accurate.

Also, it astounds me how utterly, utterly stupid I can be some days.

New injuries: possible dislocated/subluxed sternum; or one of the ribs dislocated where it attaches to the sternum. Either way, extremely painful, and it has me slightly worried. At first I thought it was just the pressure of my stupid bra between my boobs, but I looked, and it wasn't red, or bruised looking. It is just extremely sensitive to pressure right now, and it feels like there might be a lump there that wasn't before (but for now I'm just assuming it's either the end of a rib, or swollen tissue).

I had a great few minutes laying in bed with both hips, both shoulders, an ankle, and a collar bone dislocated or subluxed. That was kinda painful...

I spent all day yesterday pretty drugged up on pain killers. And my drug-induced haze only brought my pain down to about a 5 or 6. Hooray for medications that work! *Rolling my eyes* Grrr...

But the good news is: that really annoying vertebra I haven't been able to crack in forever - finally cracked when I was trying to manoeuvre my sternum and ribs back to where they're supposed to be.

Can't Sleep... Clown Will Eat Me...

2011-09-19T14:47:00.000-06:00

Not quite, but between the lovely ghost, and the psychotic cat, and the two babies that live downstairs, and scream at the top of their lungs 24/7, I haven't been getting the rest I need.

Also, my bed is too hard, and 3 layers of down comforter are not enough softness.

The ghost, in the last few weeks, has broken many things electronic, including 2 laptops, 1 desktop, a DVD player, and a something... Brain fog will not permit me to tell you... The ghost has also stolen my dad's book... which is really not nice.

Then there's the mysteriously opening, and closing of doors, the human voices which could only be coming from within my house (when I know for a fact that I'm alone), as I would not hear them otherwise, etc.

My hips and knees are still adjusting to my awesome shoes, but I haven't had to use my cane, and the pain seems to be the good-muscle-building type, instead of the bad-injured-something type.

I seem to have done something to my neck, but damned if I know what it is, or how to fix it. Hot, cold, and massage don't seem to have done anything, and the muscles are hard as rocks. I also have a vertebra in my spine which is not aligned correctly... So I'll have to call my chiropractor and set up an appointment sometime in the near-ish future.

It seems like that's all for updates, and interesting stuff... Really annoying, as every time I have a blog post idea, I'm not around a computer, and all the little notes I make just go *poof* and are eaten by gremlins.

Guess What I Finally Did?

2011-09-06T11:20:00.001-06:00

I climbed a freakin' mountain! I am so proud of me!

I decided on Friday that I was going to climb a mountain on Saturday. I texted my mom to see if she was up for it, and Saturday morning at 9:30 we set out.

That's a picture of my toes and the wonderful view from inside the ice caves at Moose Mountain.

There is a 6km hike from the parking lot to the base of the mountain, then the trek up the mountain, exploring the cave, falling carefully down the shale to get down the mountain, then the 6km trek back to the car. All of this took 11 hours from the time mom picked us up until we were back at home. "We" being my husband and I, my mom and step-dad. They also picked up my Opa's mobility scooter for the 6km each direction, but it ran out of power on the way back, and we mostly used it to transport supplies like snacks, first aid and lots of water.

After returning home, I took some pain meds, and went to bed. I stayed in bed mostly asleep for 17 hours. It was necessary recovery time... I spent all day yesterday relaxing, and had a really long hot shower (after waking up from another 12-13 hours of sleep)... Sitting in the tub, because my legs didn't want me to stand that long... But considering all of the obstacles that have kept me from climbing that mountain for a DECADE, I'm really proud of myself for making it all the way.

Most ridiculous part of the trip? No injuries for me! No dislocations, subluxations, just a tiny little scrape on my thumb knuckle. My step-dad fell partway down the mountain... only 10 or 15 feet. And it was more of a roll, recover, roll, recover. He got a couple of scrapes on his elbows. My mom apparently did almost the same thing. She had to throw the bag she was carrying in order to not fall. Hubby only got the extreme muscle/joint aches, as well as the exhaustion. We also took mom's puppy (he just turned 1 on Thursday last week) and he made it all the way up to the caves without injury, and as soon as we got back to the car he passed out on the back seat... Only to be awoken by the smells of beef jerky.

Today is my 4th anniversary being married to my hubby, and we're still making people sick with all of our lovey-dovey hand holding, and the fact that we don't fight. Ever. Yay us!

It's been a pretty amazing weekend, and a pretty amazing 4 years with my hubby. I think I found my groove.

Hoping all of you are finding your slice of happy on this wonderful September day!

New Shoes, and a Sippy Cup

2011-08-24T12:27:00.001-06:00

For my birthday, I went out and got a pair of Vibram Five Fingers shoes.

The part where it says they improve balance, is an understatement. Since I've started wearing these shoes nearly 2 weeks ago, I haven't had to use my cane at all, my feet aren't dislocating all over the place, and my hips are happier than they've been in a long time.

The only unhappy part of me seems to be my knees. These shoes don't have much for soles, so they don't have much for padding, which means they teach you (through negative reinforcement) to step more lightly. It seems that in regular running/walking shoes, I was walking so far to the outside of my foot that I was causing everything to be completely out of whack, and with the padding in the shoes, I was stepping more heavily than I should have been, which may have been causing the extraordinary hip pain.

But these shoes! They're comfortable! It feels like you're barefoot, so that's the biggest plus for me. With the proprioception/balance issues, most of my non-visual balance comes from the pressure in different parts of my feet, and in normal shoes all of that information feedback is dulled to the point where it's practically non-existent. I'm not saying these shoes are for everyone, but for me, they're wonderful. I may never go back to normal shoes until I find it impossible to wiggle my toes into their places.

Now on to the sippy cup part of the post. I was sitting at the computer, watching a movie, and I turned my chair so I could get up and walk over to my meds... When *Crash, Splash, Drip... drip... drip...* there went my full glass of juice. It went all over the desk, the carpet, and the floor rolly thing the chairs are on. Luckily it didn't get into any of the computers, monitors, keyboards, or anywhere else that would have caused damage... So after I spent half an hour cleaning all of the juicy bits, I went to the kitchen, and grabbed a coffee travel mug, and I've been using that ever since. Added benefits: less easy to spill, not as heavy as a glass, and it keeps my juice cold longer! I just feel a bit disappointed in myself that I had to resort to that. I feel like once again, I am growing younger instead of older.

I swear, I had more to post about, but this brain fog thing is no joke. I was at supper with my author friend, and his author friends, and my hubby and roommate, and I was in the middle of a sentence, and I lost my thought. It was like, "Hey, speaking of -insert topic- I was wondering..." and that's as far as the thought train took me. It was about 3 or 4 days later that I remembered what I was about to ask.

I Miss Saturdays...

2011-08-10T13:23:00.000-06:00

I slept through three Saturdays in a row...

One of them was understandable, as I had been drinking the night before, but it really sucks when your weekend gets cut in half because the body says "Must... Sleep... NOW!"

My left hip has been bothering me a lot lately. More than usual. So I went to the doctor to see if I could have an x-ray to check for deterioration/damage due to the ridiculous number of dislocations/subluxations I've had, and it turns out my hip is fine. No damage. Which is good news for my hip, but it doesn't explain the pain... So the doctor wants me to go see my geneticist, and have him refer me to a rheumatologist, and maybe send me for an MRI. Not fun. I'm tired of all the tests coming back normal. I was hoping for something like "you have a hairline fracture" or "look at the little bits of bone you've chipped off your hip" because something could be DONE to fix me then.

I also saw another neurologist about my twitching issues, and apparently the doctor that referred me to her didn't send any of the appropriate paperwork, and I didn't have it with me, because I thought they would have it there. Apparently the last neurologist wanted to send me for some heart related tests, and never did, so this lady is going to send me for some. Maybe. If she remembers. (Do I sound bitter or frustrated?)

Yesterday was weird. I had practically zero proprioception, and I was dizzy like you wouldn't believe (who am I kidding, the people reading this are the ONLY ones who would believe), and I was wobbling around as though I'd had a lot to drink. I was also twitching way more than is usual lately, so it might be related to my blood pressure... I had trouble locating my pulse. When I did find it, it was very slow, and very weak. I tried eating, and drinking lots of water to help with blood pressure. The only thing that seemed to help was walking home from work. But that just exhausted me, so once I got home, I curled up into a nice little ball and threw in a DVD of Dead Like Me.

Birthday Party 3.0 Was a Success!

2011-07-25T10:24:00.000-06:00

On Friday, my friend had his birthday party. We went out to a bar, and drank many alcoholic beverages, and I hijacked his party. Not in a mean way, but in a "YAY we get to celebrate 2 birthdays!" kind of way.

I got pretty drunk, on a relatively small amount of alcohol. My friend had about 3 times as much to drink as I had, and he ever so abruptly fell asleep on my lap. I have a bruise on my arm to prove it.

Saturday morning-ish rolls around, and I wake up after a nice solid 8 hours of sleep, have breakfast, and proceed to go back to bed for another 8 hours of sleep. When I woke up, I had breakfast again, and watched a couple movies before heading back to bed once again.

So I missed my niece's birthday party on Saturday, because I was recovering from a lovely hangover, but I'm sure she'll forgive me.

Last night was another early night, with me going to bed at an incredible 9:30. That's really early for me. And I fell asleep almost immediately after laying down, which doesn't happen to me. Ever.

But I did finally have a birthday party, and I got to see one of my really good friends from high school, and introduce him to my hubby, and I met a bunch of his friends, and it was all really fun. The 2 days of recovery were well worth the fun night out.

Birthdays...

2011-07-18T09:05:00.000-06:00

Last year for my birthday, I got a spiffy cane.

This year for my birthday, I got a nice relaxing day in bed.

By that I mean; last year I broke down and gave into my pain, and finally started using a cane, even though I should have been using one for a while by that point.

And this year, I was so allergic to everything, I had to take Benadryl so I could breathe and when that kicked in, I was so dizzy, I had to go back to bed, and forego all attempts of a "Birthday Party."

So sunday rolled around, and I tried Birthday Party 2.0, which consisted of going to the Calgary Stampede, on the last day, so I could watch some fireworks. Hubby and I walked around for about 2 hours, then when the fireworks were about to start, we climbed 2 flights of stairs and found a nice place to stand and watch the fireworks. The thing is, even though walking around slowly for 2 hours didn't bother my hip, standing for about 10 minutes caused a lovely dislocation, and I went smashing into the pavement, landing on my knee. Stood up, and sarted the slow, slow trek back to the car... Wishing the entire way that I had brought my cane, even though I didn't need it until I fell.

Oh, and I totally missed the fireworks, and the only game I'm actually any good at, they don't have there anymore.

But, YAY, I made it one more year... I'm a whole 24 years old now... Why do I feel like those numbers should be reversed, and doubled?

What Does Pain Look Like?

2011-07-13T15:07:00.000-06:00

Can you see the searing, pulsing flames as they lick slowly across my chest, burning hotter as they reach my shoulder and linger?

Can you see the color of the glass shards as they slowly wear away at the soft tissue of my hip?

Can you see the sharp knives cutting into my ribs, stealing my breath as I walk?

Can you see the waves of pain crashing down upon me, suffocating in their weight, taking all my energy just to keep from drowning?

I can.

They are all reflected in the single tear falling slowly, silently, down my cheek, as I hide my face from you.

Dishes or Laundry?

2011-06-27T13:50:00.001-06:00

Unfortunately, that is a question I ask myself more often than I care to admit. Do I do the dishes, because I haven't any clean ones left, or do I do the laundry, because I've worn my shirts twice each, and I'm dangerously low on clean undies? (TMI?) Either way, after my very rushed shower, there is only enough hot water left for one of these things. There is also only enough upper body strength to do one of these things.

Yesterday, I decided it was time to do the dishes. They were stacked in both the sinks, on top of half of my counter and all over the stove top. So I filled both of the sinks, and started soaking things. There were dishes from my gramma's rhubarb pie that she'd sent me, and no matter how much you soak them, they never want to come clean without a thorough scrubbing. Scrubbing is the worst thing on my shoulders ,because it pits my strength arm against arm, and it dislocated half my fingers, and both my shoulders, and some ribs. Which is all well and good, and to be expected. Until my right shoulder goes *SNAP* and I get the feeling of a hot poker going through my shoulder blade and into my ribs, accompanied by a very strong electric shock feeling. My right hand went numb for a minute, and when the feeling came back, I started scrubbing again. A bit later I was putting a dish into the rinse water, and just shifting my weight that slight bit caused the same sensation through my left hip.

Once the dishes were all clean, and sat out to dry, I took a nice 2-3 hour break and watched a movie, and read a chapter or five of my current book. Then I put away all the dishes. And I even remembered to write myself a grocery list, so we wouldn't be out of toilet paper with me begging my hubby to run to 7-11 to pick some up at 10:00 at night... again.

So tonight, I will try to go grocery shopping. And once that is done, and I get home, and have everything away in its cupboard, I will once again contemplate laundry. Or maybe I'll put it off another day or six... I won't know what kind of energy I'll have until the time comes...

I hope everyone is doing alright.

Hugs and happy thoughts to all of you!

Can we ban the use of invisible sledgehammers?

2011-06-21T10:49:00.000-06:00

It feels like instead of twitching, I had someone smash my shoulder to bits with an invisible sledgehammer. I was reduced to tears for 3 hours straight. I doubled up on my pain meds, and was still unable to distract myself from the pain. I was too drugged to read, so I watched tv, and I had an ice pack on my shoulder.

The twitching is getting to the point that the dislocated shoulder/collar bone/larynx/ribs are all driving me nuts.

I choke on myself multiple times a day. It currently feels like I have 2 separate dislocations, as well as a pulled muscle in my shoulder.

I am once again at the point where I feel as though I can no longer hold my job. The 9 hour days, even though they consist of mostly sitting, are too exhausting. I haven't been able to find a comfortable sitting position for weeks, and I am so exhausted by the twitching and the pain, that I am unable to do anything outside of work. But I'm me, so I'll tough it out as long as possible.

But I could really use a nap... This whole 2-4 hours of sleep every night isn't enough.

So Tired

2011-06-15T11:03:00.000-06:00

The title about sums it up.

My poor hubby has had the flu for the last 2 weeks, and I seem to have avoided the worst of it. All I seem to have caught is the inability to sleep, and all the extra aches and pains that usually come with being sick. And a runny nose. And I have no balance and nearly killed myself in the shower this morning.

I'm also cat-sitting. Have been for 2 whole weeks, and Princess's mommy should be back tonight, so I don't have to climb all of the hazardous, mismatched stairs.

In other news, I recently went to the bookstore, and purchased 5 new books, and went home and downloaded 2 additional books for my ebook, as well as one more book which was e-mailed to me. One of the books I bought was from a series, #20, and I have finished it, and am now re-reading 2 or 3 of the books in the series because some of the main characters haven't been in the last few books, and I missed them.

I have been having problems with Blogger. I recently got a new android phone, which forced me to get a new Gmail account, and I can't seem to leave comments. I've been trying to comment on Jess's blog over at Falling Apart at the Seams, to send my thoughts out to her friend who has just received a liver transplant, as well as Jess's pooch who is having medical problems of his own. I've also been trying to comment on Saurou's post at Disjointed regarding an explanation about brain fog and memory holes."I have a hole in my vocabulary the size of... That place... The south-ish one. You know that big place in the south? Ummm... Texas! A hole in my vocabulary the size of Texas."

Since returning from my vacation, I have only fallen once or twice, and I haven't had to use my cane. But I'm twitching more than I had been when I was falling all the time.

I'm Back!

2011-05-24T13:07:00.001-06:00

Okay I got back at the beginning of last week, but I've just been too busy to post anything. This post started off as bullet point, and is therefore a bit scattered, and jumping from topic to topic in no particular order.

Let me start off by saying that driving through the Rocky Mountains in the moonlight is incredible. You can see the snow at the top of the mountains, and the outline, and some very vague sense that there might be trees.

While we were vacationing, my hubby and I, and one of his friends took a nice long walk. We were out for 3-4 hours, and I went without my cane, because driving the 12 hours to Vancouver did a number on my right shoulder. During the walk, I dislocated my left hip about 5 times, and I came to the realisation that uphill is a lot more forgiving on my joints than downhill (and sand is not meant for bendy people to walk in). The next day, I was practically unable to walk, and hubby was hurting too, so we mostly stayed in, and took our pain meds, and tried to rest. -- Since we got back from the trip, I have been almost walking like a normal person. My limp is very slight, and probably not noticeable to other people. So, walking helps... but you need to give yourself 2-3 days to recover before it feels like it's done anything good.

Now on to my coffee date with my friend in Vancouver. It turns out I thought he was older than he is by a year, and we had nearly 6 years of our lives to catch up on. That made me feel old. I haven't seen him since I graduated, or shortly thereafter, and he is planning on coming back to Alberta for a few days at the end of June to visit family. I think I've convinced him that we need to get the old gang together for drinks one night. I've already got one other friend who's excited about the prospect. I managed to get through the whole nearly 3 hour visit without talking much about my disability; which I'm very happy about, as the last friend I caught up with told me that I've grown bitter about the whole health care thing.

On the trip, I figured out that I can in fact digest things. The only problem is I MUST HAVE COFFEE in order to do so. I didn't have coffee the first couple of days of the trip, and when I finally did, I had to take several trips to the bathroom... So, now at least I know to drink coffee every day, about 2 cups.

I recently had my car to the mechanics for my power steering problems, and at that time they were supposed to do an oil change, and a seasonal inspection. They didn't. I had to spend $120.00 to have my "thick as tar" oil changed, as well as filters, a bolt, a gasket, and a shampoo of the oily bits to get rid of the crud that built up.

There was recently a horrendous fire in Slave Lake, and for nearly a week, I had second cousins who were afraid they had lost everything. They had just built a new house there, and were getting ready to move in, or had started moving into it, so they also had their old house, as well as a business with a lot of expensive equipment. Luckily for them, the fire completely missed both of their houses, and the business, and they will be able to move back in as soon as the electricity and water are functional again. My one second cousin is helping with the rebuilding efforts. They will also be selling their old house, which will help get one more family out of the temporary shelters. These family members have an adult daughter at home with them who has Down Syndrome, so I was very happy to hear that they all got out safely, and that they still have a house to go back to.

I received a letter in the mail today from the Big Hospital in my city, saying that I have an appointment with their movement disorder clinic in August. I'm confused. I had never heard that I had been referred to them, or that there even was a movement disorder clinic in the Big Hospital. When this all started, I was told that the Children's Hospital was the only place with a movement disorder clinic, then I was also sent to a neurologist, and now they're sending me to another movement disorder specialist. I'm glad that they haven't given up on me, but I'm so frustrated by the amount of time I've had to wait.

That's all I can think of for now. I hope everyone is doing okay!

Vacation!

2011-05-08T18:57:00.000-06:00

Hello everyone!

I'm on vacation right now in Vancouver!

So I'm probably not going to post again until after I get back. I gave the pretty sushi scarf to my Vancouver friend, as well as a bacon and egg scarf to her hubby. They both loved them.

So... Driving for 12 hours to get here was a bit horrible. The crampiness of the car, the jerks on the highways... one of which followed me with his high beams on for quite a while, because he must have thought I had mine on when I was behind him... Grrr...

I'm looking forward to seeing a friend of mine from highschool this week, I haven't seen him in at least a few years, probably closer to 5 years. I'm looking forward to catching up, but I'm a bit scared of him seeing how disabled I've gotten. That's the worst part of catching up with friends... When I was in high school I was gimpy... always limping around, and clumsy, and occasionally using crutches because of the frequent sprained ankles, but I could still run on occasion, and I rollerbladed frequently, and I could still ride a bike and go hiking... Now I'm slow, and more limpy, and usually walking moderate-long distances with the aid of my cane.

Oh well, coffee with an old friend is always fun times!

And last night, I amazingly found my way back to our hotel with very little help. So my sense of direction is a bit better than I thought. The pedestrians and buses here are nuts though. Changing lanes with barely enough room, pedestrians crossing against the light, walking between the cars, getting stuck in the middle of the road between the opposing directions of traffic.

Oh, and the first place we parked for a few minutes, there were no signs saying you had to pay for parking... anywhere, and there was no visible place to pay for parking, and we got a ticket. $40. Grrr...

Oh well.

Everybody be safe!

And keep spreading awareness!

Hugs,
me

May!

2011-05-03T16:17:00.000-06:00

As you all probably know by now, May is EDS awareness month. Instead of writing a whole big thing, I'm going to link a wonderful lady who has already gone through the painstaking process of linking, and mentioning, and such.

As a side note, I have also been posting EDS awareness to my Facebook account, and I suggest you do the same. You never know whose life you could change.

Another side note, I made a sushi scarf for a friend I'll be seeing on vacation next week. I'm currently working on a bacon and egg one for her hubby. The patterns for these are not available online, but in a book by Twinkie Chan. She also has a blog, just google her name plus "crochet" and you'll find all of her pretty creations.

Apparently May is side note month as well... Another side note... I have a brand new spiffy e-mail address! You can now contact me at:

Bubble_Girl_EDS (at) hotmail (dot) ca

The only reason I wrote the "at" and "dot" is to dissuade spammers, cuz they suck.

Hoping for HUGS and understanding for all my fellow Bendies!

Mobility

2011-04-29T10:57:00.001-06:00

Yesterday afternoon was busy for me. I had to go to the bank, and stop at Chapters to pick up a crochet pattern book, then go to a Wal-Mart and a Zellers to get the yarn I needed for a pattern. All of these stores are pretty close together, and on a good day the entire trip should have taken me 45 minutes to an hour.

But...

As I was gathering my things to leave work, I fell. With my desk on my left side, I fell to my right a bit, dislocating my right knee, and crashing painfully into my chair. The chair caused me to twist some, and I dislocated my right shoulder and hip on impact. My left hip is still not healing, or feeling any better from weeks ago, when I must have done something to it, so I've been limping, favoring my left hip for a very long time.

I had to use my cane. This is usually not a big problem, as my right shoulder is still kinda good, and can take the added stress of cane use most days. But my left shoulder will never be able to take the added strain, so even after dislocating my right shoulder, I still needed to use it for my cane. And even after dislocating my right hip and knee, I had to use the cane for my left hip, so I at least wouldn't be limping onto my right leg (If I'd used it for my right leg, I'd have gotten about 5 steps before I turned into a puddle of jello). The little bit of lessened strain on my legs meant I was in about even pain in both sides. Between caning with my right hand, and carrying with my left, both of my shoulders were killing me after about 5 minutes of walking. I also find that when I'm using my cane, I use my core muscles a lot more for balance, and stability, and it causes my ribs to slide in and out almost constantly.

By the time I had the book, I was ready to go home and chop off all my limbs. But I'm stubborn, so I continued on. When I got to the yarn aisle at Wal-Mart I was wishing I'd grabbed the last electric scooter they had for my trip, but I have too much of that self-destructive pride in my blood... By the time I was through Zellers' yarn aisle, I barely felt steady enough to go down the escalator.

This pretty much confirms for me that I will be needing a scooter of my own much sooner than I can emotionally prepare for it. If I can't even walk with a cane while carrying a small book and 3 balls of yarn, I am quite certain I will not be able to push myself in a wheelchair. So that leaves a power chair or a scooter.

The entire trip kept me out for 3 hours, and my concerned hubby texted me asking where I was.

Only good thing is that everywhere I went people were kind enough to open doors for me, and not to stare at me, or comment on my age.

Anyone Watch House Last Night? Post Contains SPOILERS

2011-04-12T13:27:00.001-06:00

Hooray for recognition! I really hope he diagnoses more people with the different types of EDS, or shows the insane number of other things EDS can cause... Last night's episode was a bit off the wall as far as I'm concerned. Three different diagnoses: EDS, which caused 3 miscarriages over 9 years, which lead to compulsive hoarding, which lead to raccoon feces, which lead to Q fever. Sure, there is a certain logic there, but I'd like something perhaps a little more likely... It could still be quite convoluted from the lay person's perspective, but it would make me feel better not to be grouped with the "depression makes you irrational" group. There was also no talk of which type of EDS she had, which I'm also not too happy about.

Watching the show last night, they say "she has Ehlers-Danlos" and my hubby and roommate both give me a shocked look. I was strung out on too many pain killers, so I'm going to have to watch it again to see if I can pick up on any clues.

For the past week, I've been having increasing problems with both of my hips and my left shoulder (hooray for sex-related injuries!). My hubby told me I'm ready for a wheelchair. I told him even if I'm physically ready for a wheelchair, I'm not emotionally ready for a wheelchair. Which brings up some awkward news. I've finally been able to admit to myself that I need to let people help me. I can no longer carry the coffee urn full of water the 10 feet from the sink to office. I need help. I also finally said yes yesterday to the cashier when she asked "would you like a carry-out?"

Also, something weird with my left shoulder: after days of heat packs and ice packs and pain killers, I finally got some relief last night. I was laying in bed when I decided it was time to try stretching the huge knotted muscle under my shoulder blade. The only way I can do that without a masseuse is to severely dislocate my shoulder (in a nice, gentle, controlled way of course). So that's what I did. I dislocated it, pulled with all my strength to stretch the muscle, put it back in, let it rest, then repeated the process 3 or 4 more times. It feels a bit bruised today, but "a bit bruised" is a far cry from "somebody hand me a chainsaw so I can cut off my arm." If I could only do the same thing to my hips, I'd be happy.

More Pictures!!!

2011-03-29T10:26:00.000-06:00

If you click on the images, they'll pop up a lot bigger, and in more detail.

Baby Sweater

2011-03-23T16:26:00.002-06:00

So, I just thought I'd write a quick little blurb: this is the sweater I told you guys about in the last post!

Trip to the Zoo

2011-03-21T15:59:00.000-06:00

I had fun over the weekend.

Saturday, I crocheted a really cute little baby sweater, as well as some cute little star-shaped wash cloths. I also finished my pillow case, which had started out as a baby blanket, in a nice gender-neutral yellow. I decided on turning it into a pillow case after I learned that my friend is having a boy, so I get to use fun, bright boy colors.

Sunday consisted of hubby and I taking our time waking up and showering, then we went out with his best friend to the zoo, and walked around for about 5 hours. I took my cane, and used it 95% of the time, the other 5% was spent resting my cane hand. Amazingly, the only problems I encountered were my left hip stabilizer muscle, and my right knee and calf hurting pretty badly today, and my right hand feeling like it was going to blister from my cane.

I think all of my left hip dislocations (coming up on 400 of them this year alone) have finally prompted my left hip to grow more stabilizer muscles; both to keep it from dislocating, and to keep me standing. Aside from the pain involved in growing new muscles, it seems to be working properly for a change. Instead of the full blown dislocation, ending with me sprawled across the floor, it's just a sublux, which makes me walk like I'm drunk.

After the zoo, we went out for dinner, then went to a movie. Hubby and I have been feeling pretty isolated (cabin fever anyone?), with neither of us having the energy to go out, so we planned a trip to the zoo, for the second weekend in a row, and actually made it out yesterday. It's so nice to get out, and have fun, and not just be surviving the day-to-day necessities for a change.

It's amazing how much a little fresh air will do for the body!

Oh, and more on the plus side of things, I can apparently eat junk food, and not have a really bad tummy ache afterwards. Weird what my body is doing to me. Ice Cream? Fine. Chips with melty cheese and salsa? Fine. Cooked vegetables? OMG NOOOO!!! Raw vegetables? Are you trying to KILL me?

Week From Hell (I get a bit ranty)

2011-03-11T13:42:00.001-07:00

I had an appointment with MY doctor on Tuesday to see if I could convince him to send me for a Barium Swallow. Shortly after leaving work, I got stuck at a really busy intersection, so I checked my mirrors, and did a shoulder check - no traffic in the other lane as far as the eye can see (which is about 2 blocks), and I started to change lanes. That's when it hit me - literally - "it" being a Subaru Impreza. So we pull over, and exchange insurance info, with her yelling at me for a while, and we check out the damage to our respective cars, my rear passenger door is pretty dented, and she has a couple little scrapes on her front bumper. No injuries, so we continue on our way.

I arrive at my doctor's appointment precisely on time, put $2 in the parking meter, only to find out that it's broken, and head into the office anyway. Twenty minutes later, the doctor walks in, and we sit down, and go over a small percentage of my symptoms, and with no warning he reaches over, lifts up my shirt, and pokes me in the gut. Exactly where it hurts. He does it a few more times for good measure, and tells me "it's gastritis" and starts to write a prescription for pills to lower the production of acid. At this point I tell him that I think it might be gastroparesis, and that I'd like to be sent for a barium swallow to either diagnose it or rule it out.

He went crazy at this point, telling me that HE is the doctor, and that I had no reason to doubt his diagnosis, and that "That's the problem with you Canadians, you always want to have so many unnecessary tests done." Cue the tears. Mine. Then he starts telling me to calm down, and that crying isn't going to get me anywhere, at which point I tell him that I'm not crying to get anything, I'm crying because he's yelling at me, and telling me to calm down "WILL NOT MAKE ME ANY CALMER!!!!" So this is where he yelled at me for yelling at him, and then he wrote me a prescription for a medication which speeds up the stomach-emptying process, and sends me on my way.

I was so angry, and frustrated, because for whatever reason I was unable to articulate that the last time a doctor threw medication at me without a real diagnosis, I ended up in the hospital for three days. During the visit the doctor also told me that I had to eat food, and I'm not allowed to drink Ensure or Boost instead. He didn't give me a reason. He didn't care that eating food is EXTREMELY PAINFUL.

I researched the side effects of the pills he prescribed me, and one of them is "Tardive Dyskinesia" which is a movement disorder, characterised by the patient being extremely sensitive to dopamine. So I'm definitely NOT going to be taking that one, and it looks like my mystery movement disorder might actually be Tardive Dyskinesia. The symptoms fit, the onset fits, the hospitalisation after taking dopamine agonists fits. So there's something else to look into.

Other things going on this week:

My hubby broke a window in our house, because it got caught on something when he was trying to open it.

I had to scare the pants off my roommate to convince her that she really did need to go to the hospital (she did, and she is doing better now).

I've been to the grocery store 3 times this week, each time thinking that I had gotten EVERYTHING on my list... Now that I think about it, I need conditioner... Gotta love brain fog.

My car, with its nice shiny dent, had to go to the mechanic (my power steering COMPLETELY crapped out). The mechanic didn't let me know that we needed to order parts for it until the end of the day, even though he'd known for hours. He didn't give me the necessary information to order those parts until the next day, and I ended up walking home from work on Wednesday, after I told the mechanic he'd have to bring me one of the canes from the back seat of my car. Walking home was an adventure. For the weather conditions (icy, melty, slippery) it should take a healthy person about 10-15 minutes to get from where I work to my house. It took me 50 minutes. When I got home I was in incredible amounts of pain, and it felt like I had dislocated my pelvis. It later turned out that it was a combination of my radiating hip pain, digestive issues (because I was stupid enough to eat food), and "aunt flow" decided to stop by for a visit this week as well.

There was also a water main break outside of where I work, so they came and dug up some of the street, and turned off our water for a day, at the same time my aunt flow reared her ugly head. It would have been a nice time to have running water.

Oh, and I Apparently Forgot to Mention...

2011-03-07T15:48:00.001-07:00

I spoke to the appointment co-ordinator for the G.I. specialist I've been referred to, and I was told that they are booking appointments for 16 to 20 MONTHS away.

After talking to her on the phone for 20 minutes, I had her convinced that I must be employed in the medical field, because, apparently I sound that knowledgeable about G.I. problems and tests and so forth.

Another thing is, my mom (only after I mentioned it) told me that a very long time ago she was diagnosed with gastroparesis. So that just tells me that I'm probably looking in the right direction.

I spoke to the receptionist at the walk-in clinic this morning, and it turns out the doctor I was supposed to have an appointment with LAST Monday will be away until Friday this week. So I've called MY doctor, and set up an appointment for tomorrow to try to convince him to send me for tests.

Wish me luck!

Am I Crazy Enough YET???

2011-03-04T09:59:00.000-07:00

Yesterday... Sucked.

After work, I had some running around to do. First, it was off to the bank, then to the walk-in clinic. When I got to the walk-in clinic, I discovered they were closed due to the doctor not showing up for the THIRD day in a row. The pharmacist right next door said that he'd been referring people to the walk-in clinic about 10 minutes away from there, so I headed that direction, only to find that they, too, had no walk-in doctor that day.

I resigned myself to not seeing a doctor, and went to the mall to buy my gramma some stretchy yarn.

When I finally got home, it was only to discover that somewhere along the way, I'd lost my house keys. They could be at the bank, either of the clinics, or at the mall. With snow on the ground, and all of those places being high-traffic, it's likely that they've been buried, not to be seen until spring, if they're ever seen again.

The tiny bit of patience I had left for our health care system has vanished. Each new setback feels like another nail in my coffin. I feel defeated. But I'm too stubborn to accept defeat.

I demand a rematch.

Test Results?!?!? You're Joking Right?

2011-02-28T15:58:00.001-07:00

I received a phone call today from the doctor's office which referred me to the G.I. specialist.

Lady: "Doctor Whatshisname would like to see you to go over your test results."
Me: "I haven't had any tests done, I'm waiting to see a G.I. specialist."
Lady: "But the doctor wants you to come in to go over your results..."
Me: "What results?"
Lady: "I don't know, he didn't specify that."
Me: "Okay... When can I see him?"
Lady: "You can make an appointment for no later than 4:20 today, or you can walk in on Thursday"
Me: "Well, I guess I'll make an appointment for 4:20, and take time off work to see what this guy is talking about."
Lady: "Sounds good. Today at 4:20."

Less than an hour later...

Lady: "The doctor called, and he won't be in today. So you'll have to reschedule your appointment."
Me: "Oh? The appointment you called to give me less than an hour ago?"
Lady: "Yes, you're booked in for 3:50 this afternoon, we have to reschedule."
Me: (Ignoring the inconsistency) "Can you talk to the doctor and find out what he wants before you call me back to reschedule?"
Lady: "Sure can, but he won't be in until Thursday, and we don't take appointments on Thursday, so you'll have to wait until next Monday to see him."
Me: "Okay. Can you tell me where I've been referred to for the G.I. specialist, and what their number is? I'd like to see when my appointment is for."
Lady: "Yes... (5 minutes later) ...It looks like they've received the request, so they'll call with your appointment time, but here's their number so you can call them."

I then called the G.I appointment co-ordinator and their answering machine said: "If you are a patient calling to enquire about your appointment time, be advised that we will call you to confirm your appointment three months in advance."

After I heard that I lost just a little bit more faith in our health care system. It's already been a month, and they haven't called me. They give you no idea as to how far away they are booking appointments for, and there isn't really any way to expedite the process, except bullying an MD into ordering tests BEFORE you see the specialist, which they seem to be loathe to do. If you do the test, send the results to the specialist, and have them look over the results, if they see any problems, THEY CAN GET ME IN SOONER!!!!

Add all of this to it being my dead dad's 50th birthday this past Saturday, and I'm just completely lacking in the happy department.

Oh, and I'm still not eating anything besides salt & vinegar potato chips to keep my blood pressure in the "don't lose consciousness" range... And yogurt; it's happy in my tummy.

Second Opinion

2011-02-08T11:27:00.000-07:00

I went to the walk-in clinic last night, and spoke to the doctor about my tummy troubles. After barely listening to enough of what I said to form an opinion, he promptly ignored me and spent 5 minutes staring at his computer screen before saying "I'm going to prescribe you these pills." He then went on to tell me (after I practically forced it out of him) that "these pills" will slow down my digestive system to keep the food in me longer, so I'll have a chance to digest it properly, and absorb it. This is where I interjected with "NO. No, no, no, no, NO. Bad idea. It took approximately 24 hours for the food to pass through my system undigested. I've been dealing with a ridiculously slow digestive system my whole life, combined with chronic constipation. Keeping food in me longer is the absolute worst thing you could possibly do to me."

He has referred me to a G.I. specialist, and I should have an appointment hopefully in the next 2-3 weeks. If doctors would actually take proper information, and ask RELEVANT questions, they might have a better chance at treating people. I didn't go in complaining about violent diarrhea and flu-like systems... So why do you assume that when I say I passed food undigested, that it was in liquid form, and immediately after I ate it? If I had flu-like symptoms, I would have said so.

The only question he asked me was what type of food it was, and if I had been tested for gluten intolerance. I told him I've had a negative Celiac blood test, but I've cut gluten out of my diet since this occurred as a precaution anyway.

But anyway, I'll be sticking to my liquid diet until then, I've eaten a few things as far as solid food goes, and it causes quite a lot of pain when I do. Too bad I don't like Jello. That would probably be a good thing for when I want something semi-solid. Oh well... Ensure comes in orange flavor, which combined with the creamy ingredients, should taste creamsicle-ish.

I'm Fine, Apparently

2011-02-01T12:35:00.001-07:00

I went to the doctor last night, told him about the completely undigested food that I passed, and he didn't even examine me. He said I should take Metamucil 2-3 times a day, take some laxatives when my constipation is really bad, and drink between two and three litres of water a day.

Then I told him that the Tramacet was completely ineffective, and asked if I could get some codeine, and he wanted to give me Tylenol with codeine, and I managed to convince him that was a bad idea. The thing about Tylenol with codeine, is that I get way too much Tylenol by the time I get enough codeine, and it makes me sick, because I'm practically overdosing on Tylenol.

So for now, I'm going to stick to my meal replacement beverages, and see how that goes. I've found some good-tasting flavors, so now I just have to look out for sales on the things, because they're pretty expensive.

It looks like I've found the right doctor for getting pain meds without being called a drug-seeker, and he even said "Tramacet works for everybody" but that was after I told him it didn't work on me. I educated him about most EDSers not reacting to things properly, and about how in certain countries part of the diagnostic criteria is that we have no reaction to local anaesthetics, and he seemed quite shocked at that. But it looks like I might have to go back to the walk-in clinic and see the random doctor of the day for my tummy troubles.

Tummy Troubles

2011-01-31T12:56:00.000-07:00

Please turn off your wild imaginations, because you do NOT want a mental picture of what I'm about to tell you.

I had lunch last week, and when it snaked its way through my digestive tract, and out the other side, it did so without being digested. At all. And no, it wasn't corn.

It was disturbing. And a bit scary. So I've decided to bite the bullet and go to the doctor. I've also switched myself onto a diet of soft things like cooked vegetables, and liquid meal replacements. As well as some yogurt, which I think I'll cut out for a few days.

I feel so bloated, and uncomfortable, along with being nauseous anytime I put food into me (which includes the liquid foods too).

And in case you're wondering, I'm not pregnant, and its not that time of the month.

But my twitching has pretty much gone away, except in my neck, and I've been given 3 codeine tablets by a fellow in-pain friend of mine, and they actually make the pain go away. So I'll see if I can talk to my doctor about getting some codeine.

Sympathy Cane

2011-01-13T12:13:00.001-07:00

I went out to get lunch for work yesterday. When I got to the mall, I parked my car, and reached into the back to grab my cane, as my hip has not been cooperating at all this week. My cane is a spiffy collapsible cane, hollow on the inside, with an elastic running from one end to the other, which pulls it together as soon as you take it out of the carrying case. It's winter, in Canada, and the temperature yesterday was around -30C. So I pulled out my cane, expecting a *Snick-snick-snick* of the cane snapping itself together, and all I got was a *Swish-flop* my cane danging loosely from my fingers.

My poor cane dislocated all three of its joints. I think it'll need a full body cast, and some heat therapy before it can go for a walk again.

I think it caught my EDS. Or it thought it looked like big bunches of fun to be completely dislocated and useless, and decided to try out the whole "I can't, I'm broken" excuse.

I ended up shuffling through the mall, a usually 5 minute walk taking about 20 minutes, each direction. By the time I got back to work I was in so much pain, and I took 2 Tramacet. No effect. 6 hours later, I took 2 more Tramacet, no effect. Same with the 2 I took on Monday, and the 2 I took on Tuesday. Either I have the wrong kind of pain for the medication, or the wrong kind of medication for my body... Either way, I can't seem to get any relief, or catch any breaks. My 2011 is looking a bit less shiny.

But my 2 bright spots in this gloom are:
1) My mommy bought me a cane for Christmas, and it has a shock absorber, which makes it a bit easier on the shoulder, and
2) I've had 10 people put in orders for sweaters, on top of the 5 I had already promised people as gifts, and the 2 which were ordered before Christmas. So I will be able to keep my broken bits distracted from some of the pain with all the crocheting I've got to do.

First Appointment With My New-Old Doctor

2011-01-10T16:01:00.001-07:00

Doc: "What brings you in today?"
Me: "Pain."
Doc: "Where does it hurt?"
Me: "Everywhere."
Doc: "What's causing the pain?"
Me: "Dislocated shoulders, spine, hips, ribs, knees, ankles, etc."
Doc: "There's no way you can dislocate all those things."
Me: "I have Ehlers-Danlos Syndrome, a couple months back I dislocated my larynx and forgot how to breathe for a while."
Doc: "Oh, right, you're the one with Ehlers. How bad has the pain been lately?"
Me: "Mostly around a five or six, but when I fall, or twitch, and dislocate something it spikes really bad, and I'm just looking for pain meds for breakthrough pain, because I'm pretty used to the all day, every day pain."
Doc: "So what were you thinking for medication?"
Me: "All of the other doctors I've seen have refused to prescribe anything stronger than Tylenol 3, but that stopped working for me years ago."
Doc: "True enough. I'll give you something quite a bit stronger, but you have to be careful not to take it too often."

Then he printed me a prescription for Tramacet, which is a combination of Tramadol and Acetaminophen. I'm hoping it'll work for me, and maybe help me to sleep.

But YAY! I didn't get the "Ehlers Danlos doesn't cause pain" that a lot of doctors spew out, or the "You're too young to hurt that much" or "We don't want to promote drug-seeking behaviour" that a lot of doctors seem to be afraid of these days. It was a simple thing, I told him what I needed, he agreed wholeheartedly, and I was out of there in five minutes. It's no wonder he was my favorite doctor all those years ago before he moved away. 2011 is looking promising.

Change

2010-12-16T11:08:00.000-07:00

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

2010-12-10T09:28:00.003-07:00

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?

2010-11-30T11:22:00.001-07:00

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

2010-11-26T11:54:00.004-07:00

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

2010-11-23T10:24:00.002-07:00

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...?

2010-11-16T12:38:00.003-07:00

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

2010-11-11T11:19:00.002-07:00

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

2010-11-03T08:08:00.004-06:00

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

2010-10-28T08:34:00.002-06:00

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

2010-10-21T09:35:00.002-06:00

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

2010-10-14T08:12:00.003-06:00

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

2010-10-01T13:06:00.002-06:00

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!

2010-09-30T08:46:00.002-06:00

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

2010-09-22T10:36:00.004-06:00

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

2010-09-13T12:28:00.002-06:00

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

2010-09-09T11:21:00.003-06:00

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

2010-09-03T08:49:00.003-06:00

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!

2010-08-24T10:46:00.002-06:00

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...

2010-08-17T09:32:00.002-06:00

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...

2010-08-13T08:17:00.002-06:00

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...

2010-08-03T11:04:00.002-06:00

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!?!?

2010-07-26T12:57:00.002-06:00

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...

2010-07-20T10:44:00.001-06:00

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!!!

2010-07-16T12:25:00.002-06:00

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...

2010-07-15T08:19:00.003-06:00

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!

2010-07-13T14:17:00.002-06:00

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!!!

2010-07-06T11:17:00.004-06:00

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

2010-06-28T13:59:00.002-06:00

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

2010-06-22T13:17:00.002-06:00

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

2010-06-15T11:08:00.002-06:00

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

2010-06-10T15:17:00.002-06:00

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

2010-06-08T09:04:00.002-06:00

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?

2010-06-01T15:25:00.002-06:00

(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

2010-05-26T08:27:00.004-06:00

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!!!

2010-05-25T13:42:00.002-06:00

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!

2010-05-18T12:40:00.002-06:00

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

2010-05-07T18:02:00.002-06:00

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

2010-05-05T11:21:00.003-06:00

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

2010-04-26T13:54:00.002-06:00

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!

2010-04-19T14:04:00.003-06:00

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...

2010-04-13T10:32:00.005-06:00

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

2010-04-04T22:55:00.003-06:00

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

2010-04-01T15:56:00.003-06:00

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

2010-03-29T13:07:00.005-06:00

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?

2010-03-26T08:39:00.002-06:00

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?

2010-03-18T11:42:00.003-06:00

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

2010-03-15T12:29:00.003-06:00

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!!!

2010-03-03T15:29:00.002-07:00

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

2010-03-02T15:47:00.003-07:00

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

2010-02-24T08:39:00.004-07:00

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?

2010-02-18T15:52:00.003-07:00

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

2010-02-11T11:49:00.002-07:00

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...

2010-02-05T15:27:00.006-07:00

...

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

2010-02-03T12:57:00.002-07:00

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!!!!!

2010-02-02T10:46:00.004-07:00

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

2010-01-19T13:36:00.002-07:00

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...

2010-01-18T15:41:00.004-07:00

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

2010-01-14T10:33:00.010-07:00

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.

I Win!!! (So do you, 'cuz you get PICTURES!)

2010-01-12T11:13:00.003-07:00

So, I've had my pictures sitting on my desktop for almost 2 weeks. I tried in vain to upload them 174 times! My computer kept giving me error messages. I FINALLY figured out why I was unable to upload them TODAY... Grrr...

So without any (more) further ado...

(NOT) My brother's sweater (but one just like it-only a little smaller). This one got sold to my co-worker. He gave it to his daughter for Christmas, and she didn't take it off for 4 whole days!
Next, My friends' ridiculously long scarf (hard to tell from the picture, but it goes to the floor when it's wrapped around her neck once).

Next is my niece's bunny. BUNNY!!! He's a secret bunny, he has 2 big ears, so you can tell him your secrets, and no mouth, so he has to KEEP your secrets!

BUNNY! BUNNY! BUNNY!

And then, the blue bear, with his wobbly head... And his pretty orange scarf!

That's it for now. More pictures hopefully tomorrow... They'll be HATS!!!

Happy New Year!

2010-01-02T19:50:00.006-07:00

I know, it was yesterday, but... What can I say? I've been busy. I cleaned my house... Well, half of it.

I was just reading a post over here, and it gave me an idea for a post.

I love the idea of a bucket list instead of new year's resolutions.

My list of things I need to do at least once:

Going to the mountain my dad and I used to go to every summer. There are ice caves in it. I've never been able to get past the point called "The Chimney" and I want to do it so badly. Ever since my dad passed away it's been my goal. The problem is with EDS I'm usually broken in July and August, which are about the only months you can go to the ice caves. It doesn't help that about 10 years ago there was a fatality there (drunk people with no cell phones should NOT be mountain climbing) and since then they've made it an additional 7km hike just to get to the base of the mountain.

I want to go rollerblading again. I wasn't able to last year because of the unseasonable heat, and then my ankle when it had finally cooled down.

I want to travel in Europe with my husband. Backpacking. It would be a lot of work, and I'd be in pain 24/7, but I think it would still be worth it, to have that experience while I'm still well enough.

I've always wanted to go bungee jumping, but that one will never happen. I would probably end up in a full body cast... :)

I want to go horseback riding. Last time I went, I was thrown off, and dislocated my hip, some ribs and a shoulder (When I was 8 I was thrown off, and I broke my shin in 3 places). Oddly I'm not afraid of horses, but sitting on them causes all types of uncomfortable.

I want to be an inspiration to someone.

Well isn't that just a pain in the...

2009-12-30T09:58:00.002-07:00

...Neck...

A bad pain.

One of those "I just wanna go lay down for a week or two" kind of pains... But laying down hurts, sitting hurts, standing hurts... I can't get comfortable... The best I've felt in the last week was last night with an ice pack on my neck for 4 hours, and the times I've been so high on pain killers that I couldn't function.

Christmas was stressful. Lots of travelling, lots of indecision, and lots of food.

Everybody loved their hats! Yay me! (I've had requests for 5 more hats, and a scarf) I should have pictures in the next couple of days.

I did manage to finish my brother's sweater... But the hood came out HUGE, and it looks like a monk's hood... But my brother loves it, so I'm happy.

So, pain... Ribs are doing better, neck is nearly unbearable, I need to keep my head tilted slightly to the left... Hands are functional-ish, painful, dislocating, the usual. Umm... Ankle is still not healing, and my brace is causing my foot to dislocate at odd times.

I painted my finger nails with clear polish, and snowflake stickers, they're pretty!

What's new with you?

Holy Christmas Time Batman!

2009-12-10T10:56:00.005-07:00

I've been ridiculously busy crocheting Christmas presents. The weather here has been horrendous... And I feel as though my body will quit on me at any moment.

Christmas presents: I've gotten about 2/3 through my list, and that includes all of the major ones... I've finished all of the pieces of my brother's sweater, I just have to sew it together now. And I think I may have added 5 more people, plus 2 gift exchange presents to my list of stuff to do. There's FOURTEEN DAYS UNTIL CHRISTMAS, AM I INSANE!?!?!?!?

The weather is making me extraordinarily busy at work, as well as increasing my achy pains everywhere. It's getting quite difficult to have any kind of restful sleep. Last night I slept for 4 hours, and woke up with minimal pain (and minimal energy). The night before I slept for 8-9 hours, without moving, and woke up with numerous dislocations (lots of energy upon waking, which was quickly sapped away due to the pain). I have to find the sweet spot again, the one where I get enough sleep without waking up in pieces. It's a difficult balance.

Speaking of dislocations, my hands and ribs are getting worse, and my ankle is still struggling to remain intact inside my brace. I would really like to be able to wear my winter boots, but it's an either/or with the brace.

I've also been randomly depressed the last couple of weeks, I just feel like I need to cry, and I honestly can't find a reason for it.

Don't know if I'll be able to post again before Christmas with all the projects that need finishing... I haven't even made it to the chiropractor in over a month...

Odd

2009-12-01T09:22:00.003-07:00

I didn't shed a single tear on the third anniversary of my father's death. It's been a while since I've cried for him. I don't know if this means I've finally reached acceptance, or if it just means I'm getting better at bottling my emotions. I can often feel the tears well up when I think of my dad. I can't watch a movie or t.v. show that has any father/daughter issues, or the death of a father without tears welling up. The tears don't spill over though. They don't run down my cheeks, or off the tip of my nose any more.

I can't remember his voice.

In other news...
I started crocheting my brother's sweater again... Twice... The first sweater I made was too small, so I switched to a bigger crochet hook, and went up a pattern size. That one turned out way too big for my brother... But it should fit my husband. Then I started another one with the bigger crochet hook, and the first pattern size I used. It looks like it should fit nicely.

I also made my gramma a poncho. It's charcoal colored chenille. It's so SOFT! And WARM!

And I made my sister's hat. It's purple, and pink, and FUZZY!

Oh, and I fell down on the weekend... My hubby smacked my ass, knocked me off balance, and I just crumpled to the floor. I wasn't wearing my ankle brace, so I re-stretched my still-not-healed tendons. That was fun...