Time Heals

It was my dad's birthday yesterday, and for the first time since he died, I didn't cry on his birthday. I didn't think of him one bit. I spent my day yesterday in pain, and watching Downton Abbey (which is an oddly addictive show).

It feels so good to know that after all this time, it is, in fact, getting easier. I am actually coping. I'm moving on.

I spent a lot of Saturday thinking of my dad. Mostly because I was playing his favorite game: pool (or billiards, depending where you're from). I was kicking ass. I only lost one game out of 5! Pretty good for me.

And all the times I thought of him on Saturday, it was the quiet reflection of good times shared. None of this overwhelming grief of things lost.

I can think of my dad without crying. I can tell stories of him to strangers and family alike, with a smile on my face at the memories.

I think I've finally passed through all of the stages of grief. I've reached acceptance.

And it didn't hit me like a slap on the face. It crept up on me silently, so as not to spook me, I think.

I no longer feel there's a void in my heart to be filled.

I still miss him, of course.

But that's okay.

Vision Abnormalities, and an Old Frienemy (and a rant)

I'm having some really wonky vision problems. My left eye refuses to track and focus at the same rate as my right. It seems like it's mostly just a half step behind, just a little bit slower. It's really uncomfortable, too. Like a pressure headache behind my eyes.

I went to an optometrist in late fall/early winter, and I was supposed to have a follow-up to check my eyes for signs to see if I'm going to develop Glaucoma. Fun, right? I have been too busy, forgetful, and all-around out of energy, so I haven't done that. I think it might be time.

My 'Old Frienemy' is my cane. I had to bring it out a week ago, and it made me feel like crap. After 6 months without it, I was hopeful that I might not need it again, things were looking up. Then as I tried to stand after sitting in a really squishy chair, my hip refused, and I met the ground with an annoyed "thud."

Still trying to find the time to go to the doctor for a referral to the Prolotherapy guy. I can't seem to find the energy to deal with incompetent doctors any more. It seems that any time I request anything, be it a test, a referral, a new drug that has promising research... They just look at me, like "Who do you think you are?" and they get frustrated by my knowledge, pushiness, and all-around me-ness, and refuse me anything and everything. Then I get extra pushy, bitchy, and mean. Then they call me belligerent, unco-operative, and a faker, drug-seeker, etc. and the whole thing comes full circle.

When I try to play dumb, and let them figure out what's wrong with me, they inevitably get it wrong. That's how I ended up on wrong medications, on more than one occasion.  All I did was give them my symptoms, they'd come to wrong conclusions, and they'd completely dismiss any of my ideas, insisting that they were the expert, and I'm "just a patient."

Sorry that got ranty, but I'm SO SICK OF THE MEDICAL PROFESSIONALS NOT HAVING BRAINS IN THEIR HEADS!

BLARGH.

GRRRR.

And RAWR, even.

I hope you all have better days than me.

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

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

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

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

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

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.