Monday, December 12, 2011

I Found an Interesting Article

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).


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

Monday, November 28, 2011

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

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...

Tuesday, November 22, 2011

Tummy says "GRRRRRR"

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.

Friday, November 4, 2011


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.

Monday, October 24, 2011

Cold Season, As Usual

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.

Tuesday, October 4, 2011

I'm a Dumb@$$

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.

Monday, September 19, 2011

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

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.

Tuesday, September 6, 2011

Guess What I Finally Did?

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!

Wednesday, August 24, 2011

New Shoes, and a Sippy Cup

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.

Wednesday, August 10, 2011

I Miss Saturdays...

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.

Monday, July 25, 2011

Birthday Party 3.0 Was a Success!

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.

Monday, July 18, 2011


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?

Wednesday, July 13, 2011

What Does Pain Look Like?

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.

Monday, June 27, 2011

Dishes or Laundry?

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!

Tuesday, June 21, 2011

Can we ban the use of invisible sledgehammers?

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.

Wednesday, June 15, 2011

So Tired

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.

Tuesday, May 24, 2011

I'm Back!

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!

Sunday, May 8, 2011


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!


Tuesday, May 3, 2011


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!

Friday, April 29, 2011


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.


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.

Tuesday, April 12, 2011

Anyone Watch House Last Night? ***Post Contains SPOILERS***

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.

Tuesday, March 29, 2011

More Pictures!!!

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

Wednesday, March 23, 2011

Baby Sweater

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

Monday, March 21, 2011

Trip to the Zoo

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?

Friday, March 11, 2011

Week From Hell (I get a bit ranty)

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.

Monday, March 7, 2011

Oh, and I Apparently Forgot to Mention...

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!

Friday, March 4, 2011

Am I Crazy Enough YET???

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.

Monday, February 28, 2011

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

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.

Tuesday, February 8, 2011

Second Opinion

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.

Tuesday, February 1, 2011

I'm Fine, Apparently

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.

Monday, January 31, 2011

Tummy Troubles

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.

Thursday, January 13, 2011

Sympathy Cane

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.

Monday, January 10, 2011

First Appointment With My New-Old Doctor

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.