Relaxin... Not Relaxing

My pubic bone is permanently subluxed now. It grinds against itself if I stand/walk more than 10 minutes at a time. My left shoulder hasn't been properly in its socket for over 2 weeks, probably closer to 3.

Baby has also decided that when mom goes to sleep, it must be kickboxing time, as she doesn't sit still for at least half an hour after I've laid down.

I'm still not sleeping nearly enough.

But as far as the pregnancy is going, everything still seems to be going well.

I am excited to meet my little tummy monster, but I don't think I've ever felt this unwell for this long before.

I'm afraid of the next step... Being a mom... But I'm definitely looking forward to not being pregnant.

Can it be April yet?

Time For Fat Pants

My jeans were starting to get tight around my uterus, so I went out and bought some maternity pants. I'm still barely showing, and I've barely grown any, it's just WHERE I'm growing that's causing discomfort.

I've now dislocated/subluxated my pelvis a total of 5 times (twice yesterday), and my right shoulder made a wet tearing sound when I reached over to my left shoulder to massage it on Monday. My arms feel like they've been used as a tug-of-war rope, and my entire upper body feels bruised.

I've also got some new pain, which I can only describe as slowly stretching tissues, just to the inside of my hip bones. And my abs! Even though they never really did the core-supporting they're supposed to, it feels like I've done about a million sit-ups, and they BURN... Holy crap, ow.

Oh, and now that my pants aren't squishing my uterus, with their too-tightness, I can't feel the the squirmy little monster most of the time now. Except when it's bladder=trampoline time, and I have to pee 5 times in an hour.

I have so much stuff to do before baby comes. I need to go buy a new car, because I barely trust the one I have with 2 full grown adults, let alone a small helpless person. And I need to buy baby stuff. I have NONE. Nothing. At all. I'm totally unprepared.

I got a call from my geneticist's office yesterday, and I've gotten a referral to the High Risk Pregnancy Clinic, as well as the Chronic Illness Obstetrics Centre. So I'll finally be having someone take a look at my lady bits (for the first time in 5 years), because I haven't had a family doctor in so long, and these things seem to get put on the back burner.

Aside from pain, dislocations, cold/flu-like symptoms, and lack of sleep, I seem to be doing alright health-wise. The nausea is gone, to be replaced by near-normal hunger. I still don't eat much, but it's more than I ate before, so that's good. My extreme dizziness, and near-fainting have calmed down a lot.

I just want to meet this tiny little person, already.

19 Weeks, 1 Day

I had my ultrasound today, and I measured at 19 weeks, 1 day. It's 17 weeks, 2 days since conception, and 18 weeks 5 days from my last menstrual cycle. I figure I'm due the first week-ish of April. I hate how there's no clearly defined, absolute rule for counting dates.

I found out the sex of the baby today, and if you don't want to know, don't read the rest of this paragraph. I'm having a girl! With all the certainty she (the ultrasound technician) could give me, it's going to be a girl. Obviously at this point the accuracy of sexing a baby via ultrasound is not 100%, but she said she's pretty sure it's a girl!

I've had some nausea off and on, and the heartburn/acid reflux issues at night seem to be less bad if I drink milk in the evening (or eat ice cream).

It seems the only cravings I've had are sugar-heavy items. Like gummi bears, and slurpees, and chocolate, and cookies... Not anything specific though, just sweet.

My uterus feels less heavy now, but my pelvis seems to be quite crowded. There's barely room for my bladder, and intestines to be where they're supposed to, which makes the constipation worse, and makes me have to pee... 5 times today, already (make that 6).

I also have the same sneezy, runny nose, feels like a cold, with the flu-like body aches that I've had through the whole pregnancy so far. It's not nice.

I'm sleeping 3-4 hours per night, and not having to get up and pee any more, which is nice.

My left shoulder subluxed, probably a few days ago, and it just won't stay where it should. It's just so loose and floppy right now. Had a new dislocation! Dislocated my pelvis, front and center, with a holy-crap-pulled-muscle feeling more towards the left side. It was one of the ones where when it first goes, you have that terrifying thought that this is it-my life from now on is going to include a wheelchair. But it went back where it should be, and the pain went away after 2 days. It just made it impossible to stand up even close to straight, so I sat until bed time, and slept on my side.

My 900 Pound Uterus

Seriously, that's what it feels like. It feels like I've got a mercury filled balloon where my uterus should be. A poorly suspended mercury filled balloon. (I was told at my last ultrasound that my uterus was in the proper position... But I was laying down at the time... Next ultrasound, I might ask the tech to check the position while I'm standing to make sure I'm just crazy, and not in imminent risk of prolapsing or something)

Going up and down stairs, it feels like my uterus is SMASHING into all of my inside bits. If I sit down too hard, it feels like my uterus is trying to fall right out of me.

Oh, and my bladder? Is about the size of a walnut now.

And I can't sleep later that 4:00am. Can't. Last night I got about an hour of sleep. Then I had to pee, and once I was done, I couldn't fall back asleep.

I'm really happy about FINALLY GETTING PREGNANT!!! But holy crap, I need some sleep.

You know what would be cool, though? If other people could hear the clickety-clack of my ribs rubbing against each other every time I take a step. Seriously, I can kinda hear it, in a vibration-through-the-skeleton way, but it would be such pretty music if other people could hear it.

Weird thing... My whole pregnancy, until last week, I did not twitch. I think I stopped twitching right after the prolotherapy injections, but I'm not 100% sure. Last week I started twitching again though. It might all be from the joint laxity, and muscle fatigue, as aside from hormones, that's the only thing that's gone through major changes recently.

Most Exciting Medical News... And I Forgot To Tell You

I sent this letter to Chris Eagle, President and CEO of Alberta Health Services in July:


I suffer from what is generally regarded as a rare genetic disorder; Ehlers-Danlos Syndrome Hypermobility Type (also known as EDS III, or HEDS). I am writing to you today to let you know that it is not nearly as rare as you think. The commonly quoted prevalence of HEDS is 1 in 5000 to 1 in 20,000 people afflicted. Doctors are now trying to make it known that HEDS is clinically indistinguishable from another connective tissue disorder, Benign Joint Hypermobility Syndrome (BJHS). Hypermobility is found, to some degree, in approximately 30% of the population world-wide.

The commonly understood difference between HEDS and BJHS, is that one causes early-onset osteoarthritis, and numerous dislocations, which are painful (HEDS), while the other causes extreme joint flexibility, with little to no ill effects noticed such as in ballerinas, contortionists, circus performers, etc. (BJHS). The more research that is done, however, the more clear it becomes that BJHS and HEDS are opposite ends of the same spectrum, and that they should be treated as the same disorder, as more and more of these people are noticing the extreme pain and co-morbid diseases later on in life, and are having their diagnoses changed.

HEDS causes severe pain. Not directly, but through recurrent dislocations, and subluxations of some or all of our joints. For example; my left hip dislocated, on average, five times every day for over a year, and my left shoulder has only had 2 blissful weeks out of the last 15 years where it hasn’t dislocated at least once per day (and I’m only 25 years old). HEDS also causes recurrent sprains, strains, and other various injuries due to the extreme laxity in our joints, and since we can never seem to catch a break between injuries they can take many months, if not years, to be considered “healed.”

I have had the misfortune of injuring 3 major joints to the point where “normal” people would have surgery to repair them, but since I had been diagnosed with EDS, I was told that surgery is not an option. I am very thankful that the surgeons I saw were aware of the poor wound healing, and the poor outcome of surgery in EDSers, as I have heard of many patients who have had reconstructive surgeries before diagnosis, which have been repeated upwards of 30 (yes, thirty, it’s not a typo) times, as they didn’t work. I have heard several first-hand accounts of patients resorting to complete fusions of wrists, ankles, and shoulders to stop them from dislocating, while also severely limiting their ability to use said joints. The most beneficial surgeries I’ve heard of are tendon and ligament replacements, using cadaver tendons.

Since surgery is only to be considered as a last resort, we have to make do with physiotherapy, bracing, and reduced activity, as the only ways to manage our condition. The problem with that is that since the disorder is classified as “rare” and doctors are taught in medical school that they “will never encounter someone with Ehlers-Danlos Syndrome” (a quote from the very rude gastroenterologist I had the misfortune of seeing ) nobody is properly trained in how to help us. When I sprained my shoulder –while washing dishes- I was referred for physiotherapy. I phoned several physiotherapists in Calgary, to see if any of them had treated anyone with EDS, and I was met with answers that were not the least bit comforting. Most of these professionals deal with very athletic people, as they are usually the ones to sprain their shoulders (quarterbacks, baseball pitchers, and professional swimmers). None of them had ever worked with EDS before, and most were not interested in researching the disorder. If I had gone through with physiotherapy, there is a very good chance that they could have injured me further, by treating me as an otherwise healthy person with an injury.

The main reason I am writing to you today, is that I have found a treatment for HEDS. Through years of internet research, as well as talking to many, many other people with HEDS, I have managed to find Prolotherapy.

“The basic mechanism of Prolotherapy is simple. What most people are surprised to find out is that the body heals by inflammation. In other words, we need inflammation to heal our bodies. It works because it actually stimulates an inflammatory reaction in the body. We inject Prolotherapy solutions into the affected ligaments, tendons, and/or joints, which leads to local inflammation in the injected area. The localized inflammation triggers a wound healing cascade, resulting in the deposition of new collagen, the material that ligaments and tendons are made of. New collagen shrinks as it matures. The shrinking collagen tightens the ligament that was injected and makes it stronger. Prolotherapy has the potential of being 100 percent effective at eliminating pain and sports injuries that are a result of ligament and/or tendon weakness.” (http://www.caringmedical.com/therapies/prolotherapy.asp)

“Traditional Approaches to Treating Ehlers-Danlos Syndrome or Joint Hypermobility Syndrome: Although traditional medicine does not have a treatment for regenerating connective tissue and is therefore unable to heal Ehlers-Danlos Syndrome, several options have been suggested, including exercise to improve joint stability and strengthen muscle; self-management to protect joints from injury, reduce pain and conserve energy; and surgery to correct fractures and dislocated joints. The problem with any of these options is that they do little to strengthen the loose joints in the body and, thus, do not alleviate the chronic pain that people with Ehlers-Danlos Syndrome experience.” (http://www.caringmedical.com/condition_details/Ehlers-Danlos_Syndrome.htm)

I want to let you know that this relatively inexpensive treatment could save hundreds of thousands of dollars spent on unnecessary, and usually ineffective surgeries, while also lowering patients dependency on pain medications, and giving them some semblance of normality. I mentioned that I’ve had 2 blissful weeks without dislocating my left shoulder, and it is because of the prolotherapy injections I received. After just one treatment I am already noticing significant pain reduction, and more functionality.

“ I want to shout from the rooftops "Ehlers-Danlos sufferers! Get Prolotherapy!" Sure, it's unpleasant, and sure, it's lots of needles, and sure, your doctor may not think it's even worth sending you for a consult, because they have no idea what our lives are like. BUT... WHAT WE HAVE IS A CONNECTIVE TISSUE DISORDER, WHICH CAUSES OUR CONNECTIVE TISSUES TO STRETCH, AND BECOME LAX. PROLOTHERAPY CAUSES THE TISSUES TO TIGHTEN, AND BECOME STRONGER. Surgeries cause scar tissue, prolotherapy doesn't. Steroid injections may temporarily block pain, but they also cause joint degradation; prolotherapy causes some short-term pain, but actually causes tissues to grow better, stronger, and thicker, alleviating the pain. Physical therapy may strengthen muscles, and allow some people relief, but many physical therapists do not know enough about us not to hurt us in the process. Prolotherapy gives you your tendons and ligaments back, which in turn allows your muscles to do their own job, instead of doing double-duty, and being tense all the time.

“More people need to know about this. More people need to be made aware. This is THE TREATMENT. This is our hope. This is the light in the darkness we've been searching for.” (http://b-u-b-b-l-e-girl.blogspot.ca/)

It is at this point that I plead with you. PLEASE raise awareness about this disorder among doctors. All doctors, in every field should get a crash course in EDS, the signs to watch for, the simple Beighton score/Brighton criteria. Ehlers-Danlos Syndrome comes with many co-morbid conditions (approximately 75% have some form of dysautonomia), most of which have treatments. If we were properly diagnosed, we would have access to these treatments.

Please, also, help displace the misinformation running rampant through the healthcare system. This is a degenerative disorder, and it does get progressively worse throughout a patient’s life.



I received a reply from Alberta Health Services.

Here are some excerpts:

“It is clear from reading your letter that you have thought about this matter a great deal and you are well informed on these subjects to a far greater extent than most people, including physicians.”

“Knowledge of hypermobility-specific measures, such as the Brighton Criteria is not common-place in primary care, but would be part of the knowledge-base in rheumatology. Patients with issues of Hypermobility may often present to their family physicians. Often because of the musculoskeletal symptoms, Rheumatologists may be consulted for more advanced forms of the disorder.”

“You have raised concerns about the general level of knowledge about Hypermobility syndromes and the amount of physician education in this area. While Alberta Health Services is not directly responsible for undergraduate or postgraduate medical education, we commit to you to pass on your concerns to those post-secondary institutions responsible for providing undergraduate medical education and post-graduate medical education in programs such as rheumatology and physical medicine.”

“One particular part of your communication relates to the use of prolotherapy. I have consulted with two physicians in Alberta who are knowledgeable of prolotherapy, and one Rheumatologist – a sports medicine specialist with known national expertise in this subject. As you know, prolotherapy is not widely practiced, and it has particular usage, these days, in sports-related injuries, and is often used in the treatment of elite athletes. From what we understand, investigation of prolotherapy in broader musculoskeletal disorders perhaps requires more attention.”

“This raises the question as to whether or not we should ask the Province to look more carefully at the broad field of prolotherapy and musculoskeletal disorders. We will do this as a consequence of the points you have raised and refer your letter to the Alberta Advisory Committee on Health Technologies. This may or may not lead to a provincial-level review of prolotherapy and possible recommendations as to where prolotherapy might fit in the treatment of musculoskeletal disorders. Of course, during this review, any sound evidence that is out there that points to the use of prolotherapy in Hypermobility syndromes will be given prime consideration.”

“In summary, I thank you for your letter and for raising a number of points for us to consider. I will ensure to follow-up with the University of Calgary and the University of Alberta’s undergraduate and post-graduate medical education departments, and I will send a letter to the Alberta Advisory Committee on Health Technologies and raise the issue of the role of prolotherapy in musculoskeletal treatments. As and when appropriate, should I receive further information that bears on the contents and the issues in your letter, I will contact you again. In the meantime, thank-you for being an inquiring and thoughtful patient that helps us examine our processes and our approaches to care with the overall intent of making it better for those who suffer the affliction of disorders such as Ehlers-Danlos, or other variants of hypermobility.”

So Broken...

Yesterday totally sucked.

I woke up with 4 dislocated ribs (at the spine) and they stayed wobbly and not-quite-right all day. This caused some wonderful muscle spasms throughout the day. After work, I decided to go grocery shopping, because we've been out of food for about 2 weeks.

I got to Safeway, and parked in one of those wonderful handicapped stalls (because I finally am disabled ENOUGH to warrant one-at least temporarily), and hobbled to the front door to grab a shopping cart. I used the shopping cart as a walker, because my left hip has been feeling like there's a knife stuck into it since Saturday. I made the trip through the necessary aisles to get everything on my list. Then I went to the front to pay for everything.

This is where everything fell apart. There were about 40 or 50 people in line to pay for groceries, and only ONE TILL OPEN. So I stood in line... For 35 minutes. Now, most of the time, this wouldn't be a huge deal for me, but as I said, hip, ribs and back spasms had been haunting me all day. After about 3 minutes in line, I had a white-knuckled grip on the shopping cart, and I was shaking visibly. After another few minutes, my back started spasming really hard, and I looked like I was having partial seizures. Then my chin started quivering... Preparing for the tears.

By the time I got to the check-out, I was ready to lose consciousness from the pain in my back, and the low blood pressure. I was ready to abandon my shopping, and just go home... I felt defeated.

I paid for the food, stumble-shuffled to the car, and cried all the way home.

I used my absolute last ounce of energy to get the groceries into the house, and half-crawled up the 6 steps to my comfy chair.

By the time I was done, I wasn't even hungry... At least not hungry enough to tackle those damned 6 stairs...

My News

So, the reason I've had to stop Prolotherapy, and the reason all of my joints are extra floppy, and the reason my blood pressure has been super wonky is...

I'm Pregnant!

After 5 years of trying to make a baby with my hubby, we've finally done it!

I am currently 14 weeks along, and the baby is due in early April.

I've lost 20 pound since becoming pregnant, due to the lack of hunger, combined with all the wonderful nausea, and lack of sleep.

And, holy crap, my boobs hurt.

We've told only close family and a couple friends at this point, so to all my Facebook friends, please don't comment on Facebook, as we haven't gone "Facebook official" with the news yet.

Right now I'm anxious, and worried, and wondering if I'm going to have a healthy baby. After all, there are many things that could go wrong still, and 2 different genetic connective tissue disorders to watch for.

But the cute little monkey was doing headstands when I went for my ultrasound last week, and it was SO CUTE!

A Bit of an Update

Sorry I've not posted in a while.

The company I work for has undergone a change of management, and I have been doing what amounts to 2 full time jobs simultaneously. It's not fun.

On top of this, for reasons I can't get into at the moment, I have had to stop Prolotherapy injections for the foreseeable future. So I'm in a crapload of pain in my everywhere... Again. As soon as I'm medically cleared, I will start them again.

You wanna know something weird? After my wonderful 2 weeks of significantly fewer dislocations than I've had in over a decade (thanks to the Prolotherapy), once the tissues started to loosen up again, and I started to dislocate my "normal" amount of times again, the pain suddenly seemed so much MORE. It's as if my mini-vacation was enough for my body to forget what 24/7 HOLY CRAP PAIN was, and more importantly, forget how to deal with it.

My wonderful insomnia is back with a vengeance. I'm getting about 2 hours sleep per night, spread out over 8 hours lying in bed... Ugh. Oh, and my blood pressure is totally wonky, and I've had about 10 "near-syncope" events in the last couple weeks. Those times where you have just enough warning that you're about to lose consciousness, that you can sit down quickly, or lay down, before you actually pass out.

I'm trying to keep my fluid intake to a maximum, but I just can't seem to get enough into me to raise my blood pressure.

That's all I've got for now. I'll try to update sooner next time.

Love Hurts...

I had sex on the weekend.

Five times!

It was really good sex, too... Until it was over, and I rolled over, and felt that I had somehow managed to dislocate SEVEN ribs. Seriously... Ow. So I have to be really careful about stairs (because any slightest bounce, and my boobs pull on my ribs). And I have no position that's comfortable to sleep in; my ribs are either being pulled apart (on my front or back) or they're being squished together (on either side). Coughing and laughing are also painful.

But, I didn't dislocate my hips! Yay!

And the only other injury sustained was a really bad foot cramp, and I had to manipulate the crap out of my foot before the tendon snapped back into place.

As usual though, with these types of injuries, TOTALLY worth it!

Recovery, and Praise

I've had all of my most problematic joints injected. This includes my left shoulder, left scapula, 3 left ribs, entire spine, left and right SI joints, and both hips. This was done over the course of 4 separate 30 minute appointments. My next appointment, to have everything injected for the second time is on October 3rd, when I have booked a 2 hour appointment to have everything done in one go.

There are 2 reasons for this. First, the two days of really tight, swollen, tendons and ligaments is quite painful. I would rather have the 2 days of pain done and over with, instead of having 2 days for each joint, for a total of 8 days in pain, like I've just had. Second, the immediate tightness causes things to pull on each other, like my shoulder pulling on my neck and back, which caused a great amount of discomfort. I don't want that to happen again.

My Doctor was surprised that I needed to have injections into my scapula, at the bottom, where it connects to the muscle that connects to the spine. This was necessary, since when I bent forward, even with my shoulder being tightly bound to itself, it would still dislocate forward, because there was nothing holding it back. Now, when I bend forward, and let my arms dangle, they're the same length! My left one isn't 3 inches longer anymore! And it doesn't go *slip, thunk* anymore either.

My pain levels in my shoulder have decreased significantly. And this is after only one treatment! My shoulder has only dislocated from being slept on since the injections, and even then, not nearly as bad as it used to.

When I had my spine and neck done, there was a "war of the tissues" going on between the muscles wanting to pull my neck and shoulder toward each other, and the ligaments trying to pull my neck more upright. Because of that, I had a 2 day migraine, which made me feel pretty crappy, more sensitive to light, with the wonderful sensation of having forks in my eye sockets, and an ice pick to the back of my skull. It has since subsided.

I want to shout from the rooftops "Ehlers-Danlos sufferers! Get Prolotherapy!" Sure, it's unpleasant, and sure, it's lots of needles, and sure, your doctor may not think it's even worth sending you for a consult, because they have no idea what our lives are like. BUT... WHAT WE HAVE IS A CONNECTIVE TISSUE DISORDER, WHICH CAUSES OUR CONNECTIVE TISSUES TO STRETCH, AND BECOME LAX. PROLOTHERAPY CAUSES THE TISSUES TO TIGHTEN, AND BECOME STRONGER. Surgeries cause scar tissue, prolotherapy doesn't. Steroid injections may temporarily block pain, but they also cause joint degradation; prolotherapy causes some short-term pain, but actually causes tissues to grow better, stronger, and thicker, alleviating the pain. Physical therapy may strengthen muscles, and allow some people relief, but many physical therapists do not know enough about us not to hurt us in the process. Prolotherapy gives you your tendons and ligaments back, which in turn allows your muscles to do their own job, instead of doing double-duty, and being tense all the time.

More people need to know about this. More people need to be made aware. This is THE TREATMENT. This is our hope. This is the light in the darkness we've been searching for.


Is it a miracle? No. Will it solve everything that's wrong with us? No. But as far as our joints-that-are-hypermobile-to-the-point-of-constant-pain-and-dislocation issues go, this is what we've been waiting for.


The silver lining is looking ever brighter. I am still waiting for an appointment with a cardiologist to have me tested for POTS. That seems to be the biggest issue I've got right now. The constant nausea, dizziness, and incredibly low blood pressure, and the exhaustion. Once I find treatment for those, I think I'll be able to live again.

So Many Needles...

Okay, so the whole waiting thing didn't work.

Once I'd had the doctor stab my shoulder, after a couple of days I could feel that my shoulder was tight enough that it was pulling on other, looser, bits of my anatomy. So I called his office and booked 2 more appointments, for Tuesday, and Thursday this week. During those appointments, I had my entire spine done, as well as my left scapula, and 3 left ribs where they attach to the sternum. And my S.I. joints. I still need to have my hips done, and I'm on the cancellation list for the next available appointment.

I had my neck and lumbar spine done yesterday, and today they are quite sore. The doctor bruised me at one injection point (left S.I.) but it's not causing any extra pain, it's just an ugly bruise. My neck is feeling very tight today, and I had problems finding a position to sleep in last night. But I am sitting straighter, and holding my head in a more natural position than I usually do. I usually crack my neck several times a day to relieve the pressure that I feel, which also allows me to maintain range of motion. Since the injections, that pressure has built and built, and I can't turn my head to the right, as it pulls on some very tender bits on the left side of my neck.

Looking at the injection points on my spine, my mom exclaimed "holy crap your spine is crooked" as it seems to curve about an inch and  half to the right, right before it meets my hips. This is a new curve that wasn't there the last time I had someone look at the curvature of my spine, and I'm assuming it's like that from all the limping I do onto my right leg, causing really asymmetrical pressure.

My wonderfully stabby doctor has informed me that I'm responding well to the injections so far, and that I'm tolerating them better than he had expected. He's also surprised by my ability to spew out medical research, terminology, and "big words" like proprioception without getting tongue-tied. He seems to be quite impressed with my knowledge of how prolotherapy works on the body, and how those effects affect other things.

It's nice to have a doctor that realizes I'm not like some people that Google medical-related things for a few minutes, and proclaim themselves to be educated. He can tell that I actually do know what I'm talking about, and he treats me with more respect than I've ever had from a doctor. He also explains things to me as -not quite an equal- but as though he were talking to someone whose opinions and knowledge were beneficial to him.

So to sum up: I feel like crap, but I also -and more importantly- feel like I'm benefiting from the injections.

Prolotherapy Appointment

I had my first round of prolotherapy injections into my left shoulder this morning.

Turns out, all my fears about the local anesthetic were unfounded, as this one didn't cause searing pain, and amazingly offered some relief during the injection process - enough that it froze the skin, and some soft tissue, but the lovely *poke* into the bone wasn't comfy, and the fluids going in were unpleasant as hell. The doctor did listen to all of my concerns before the injections, and he answered all of my questions afterward. I think he might have been having an off day last time I saw him, because he was nothing but nice today.

On my way to the appointment, my resting pain level was about a 6... So I wasn't feeling all that great to begin with. During the injections, the highest pain spike was a 9, but it only lasted 2-3 minutes, before settling down to an 8 for the rest of the injections. About 15-20 minutes after all the injections were done, all of the local anesthetic had worn off, and my shoulder pain was down to about a 7.

We're now at 2 hours post-injections, and the resting pain is about a 6 again, but when I move it too much, or in certain directions, it'll spike to an 8 or so for a few minutes.

The next step is (for me) the hardest... Waiting...

Waiting to see if this offers any lasting effects...

Waiting to see if this makes me more functional...

Waiting to see if this will decrease my pain...

Waiting for all of that before I can start on any other joint...

Apparently I did well though. He expected me to cry or something from the needles, and the pressure of all the fluids. But I didn't, because it didn't really hurt any more than my "normal" shoulder pain lately. I did wince a few times, and I think I Grrrrr'd once or twice, but that's about it.

I'll try to update frequently-ish, so you can all see the healing/recovery/regeneration process.

G.I. Appointment

I finally had my G.I. appointment on Tuesday.

Diagnosis: IBS.

Okay, fine, I looked at the symptoms of IBS, and yes, I have many of them. But, I also have symptoms of other things, like delayed gastric emptying, and gastroparesis, as well as extreme problems with choking on everything I put in my mouth unless I'm REALLY concentrating on it.

The G.I. doc listened to my concerns as far as "otherwise healthy person with some digestion problems," but he told me flat out that "Ehlers Danlos Syndrome has no effect on the digestive tract." When I attempted to inform him that, yes, in fact, EDS DOES have an effect on the digestive tract, he completely ignored me.

He also said that EDS is such a rare disorder that even though I'm the first person he's ever seen with it, I'm sure to be the last, and because of that he wasn't really interested in learning any more about it; because, you see, he remembers it from med school... The whole paragraph they taught him how many years ago? He's in his late forties or fifties, and the information he learned is SO out of date as to be practically useless to the current body of knowledge.

I was so furious with him at the end of the appointment, that I must have had a burst of adrenaline, because I had angry, restless energy I needed to expel. So I went home, and started packing up some boxes (because we're in the middle of moving) and I moved them myself to the new house. All the boxes I packed - five in total - were packed as full as I could manage (contents of the fridge and freezer, as well as our canned goods, and non-perishable foods), and I had to take them down a flight of stairs to my car, then up a flight of stairs at the new house. By the time I got all the boxes inside, my adrenaline wore off, and my blood pressure tanked. So I spent 15 minutes laying on the living room floor, watching the ceiling dance, and drinking a bottle of water.

I've also got a really bad cold, which is preventing me from taking the medication I take to increase my appetite, and decrease my pain. Because of this, I'm too nauseous from the pain to eat anything, and I've lost 20 pounds... in a week and a half.

To top it all off, everyone at work has the same cold, and my co-worker (the one whose job is similar enough to mine that we share each others work-load) has been off most of the week, putting a lot of extra pressure on me to get things done. This, right now, is the first time I've had all week where I haven't had at least 5 files on my desk with urgent problems to address, as well as a phone attached to my ear, dealing with another file. She isn't sicker than anyone else here, and it really pisses me off that she feels she can just leave me hanging like that, knowing full well that I'm not the healthiest person to begin with. (Sorry, but I really had to rant about that, and now that I have, I feel better)

Next week is my first Prolotherapy appointment, and I'm really hoping I'll be able to let him know that I don't want to have local anaesthetics injected into my body, without having to resort to the "mom voice." I'm going to try once again to explain the part about paradoxical reactions to drugs. Not just that they are less effective, or ineffective, but that they have a tendency to cause the exact opposite reaction in some people (including myself) with EDS. I'm going to suggest an alternative, if he insists that the solution will be too strong, and that it needs to be "cut" with something. Because, really, it's my body, and I don't want local anaesthetics in it. Simple as that.

Vacation, and Recovery...

I went on vacation for a week. All the way to Vancouver. And it was AWESOME!

Firstly, on the drive there, we'd stop the car every hour or so to get out and stretch, so we wouldn't be too stiff when we got there. About halfway there, I stretched my hips and back to the point where for the first time in FIFTEEN YEARS I was able to touch my toes. I know that's one of the nine possible points on the Beighton scale, and I used to be able to do it easily, but after years of "pain avoidance" and tight muscles, I lost the flexibility in my lower back. Apparently 5 minutes of stretching repeated throughout the day is all I needed to touch my toes... Yay me!

Next, there was the concert. Also AWESOME!!! I saw Rammstein! And they blew up EVERYTHING. Seriously, fire, fire everywhere, and I'm glad our seats were as far back as they were, or else I don't think I could have handled the heat.

After that, there was walking. Lots of walking. I walked until I got a blister, then I walked some more, and kept walking until my hip suddenly decided it'd had enough... Then it was bed rest for the next day and a half, and walking with my cane on the one trip we had to take.

After that, we went to Osoyoos, and attempted a swim in the lake... Which was stupid, because it's way too early in the season, and the water is incredibly frigid... But our hotel had a pool, and we took full advantage of it. Which brings up an odd point... During everyday activities, my left shoulder is mostly useless, and my right shoulder is mostly fine. In water, my right shoulder is almost useless, and my left is mostly fine... I found it odd... Swimming around, and it's the pain in my right shoulder which makes me stop.

Through all of this, I found that being at sea level, with all the extra oxygen makes it so much easier for me to breathe while I'm exerting myself (and when I'm not). I didn't have any problems catching my breath walking up hills, or over long distances, like I usually do. And something else about Vancouver, whether it's the weather, or being at sea level, or the humidity, my pain levels were so low. Practically non-existent. And when things did hurt, they healed a lot faster too. The hip pain from over-exertion took a day and a half to heal, and I've had similar injuries before which have taken weeks to even start to feel better.

Now on to the recovery portion... Made it back to Calgary in one piece, but I fell asleep in the car, and really tweaked my neck. It's been six full days of agonizing neck pain, with really stiff muscles. And my left shoulder is seriously annoying the crap out of me right now. Oh, and inexplicably, my twitching and falling have made a comeback.

And the best part? We're moving over the next couple of weeks.

Awareness Month

May is EDS awareness month.

I would like to make you all aware of some hard truths about EDS.

EDS causes its sufferers to be in pain. But that doesn't say much, does it? If you stub your toe on a coffee table, you are in pain. This is nothing like that. The pain caused by EDS is comparable to getting hit by a car. Every day. For the majority of your life.

The pain of EDS is also comparable to what was experienced by those unfortunate enough to have been chained to a medieval torture device, the Rack.

The pain of EDS is often misdiagnosed as Fibromyalgia (FM/FMS) - which is all-over muscle and connective tissue pain. In many places, FMS is a recognized disability, whereas EDS is usually not.

The pain of EDS, for some, is so great, and so poorly managed, that they feel their only choice is to end their life.

I know of one person who has committed suicide as a direct result of the pain caused by EDS. She was diagnosed, and her pain was being "treated" by doctors.

I have been suicidal myself, due to the pain from dislocated joints, overworked muscles, worn out joints, and the endless fatigue caused by the pain. The pain I am in caused me to become depressed to the point where I honestly couldn't care if I lived or died. I didn't see myself as having a life worth living, if I was to be in that much pain, every day, for the rest of my life. Thankfully, I met a nice person who had worked through similar issues, and he was able to talk me down (literally) from my ledge.

I read a letter today, written by a lady with EDS. In it, she expressed her lack of caring. She isn't to the point where she will actively take her own life (I hope), but she is passively allowing herself to die. She can no longer swallow liquids, so she will dehydrate to the point of death in a few days. Do you know why? The ER doc she saw didn't prescribe her pain meds. Medication she has been dependant on for years to have even the slightest semblance of a normal life. Medications which could kill you if stopped abruptly.

If we had more awareness, this could have been avoided. If we had more awareness, we would have more compassion.

If we had more awareness, we wouldn't need to suffer this life-sucking pain, or be called drug-seekers, just because we need more  medication for our chronic, unrelenting pain, than other people of a similar age/weight/sex would need for their "stubbed toe" pain.

So please, PLEASE, spread some awareness, so those that come after may be treated better than we have been.

Hugs, and I hope you all are as well as you can be.

Initial Consult

I saw my new prolotherapy doc yesterday!

Apparently I was misinformed, however, as I am his first EDS patient for prolotherapy.

He is excited to have a guinea pig, almost as much as I am to be one!

We went over our game plan yesterday, which is to start with my left shoulder, as it has persistently been my worst joint for over half my life, and if I even had 10% of "normal" functionality in it I'd be happy... Also, because it would be the easiest joint to check for improvement.

The plan is to start with the least aggressive solution, and about 15 injections into my shoulder. If that doesn't work, there is a stronger solution ,and if that doesn't work there is an even stronger solution, with alcohol in it that is the most aggressive one, which would only be used as a last resort. There's also a possibility of PRP (platelet rich plasma) being injected to aid in recovery.

I told him about the EDS related prolotherapy research I've done, and about the "whole body prolotherapy" which is in use in the U.S. and he seems to think that may be excessive... But he still needs to send me to a Manual Therapist for an assessment of my joints, and a recommendation as to which joints to work on once we figure out which solution works on me.

I had one little issue with him... Even though we are on the same page as to expectations - which is very abnormal... I usually seem to be in a different book - he wouldn't let me finish my sentences. I tried to explain to him my previous reactions to local anaesthetic - as in it BURNS, like HOLYMOTHEROFGOD WHO POURED ACID ON ME kind of burns... and I got about half way through an explanation, and he cut me off, and wouldn't let me finish. I'll try again to explain it to him. And I'll use fewer words, maybe something to the effect of "It's not that local anaesthetics DON'T WORK, it's that they DO THE OPPOSITE, as in THEY CAUSE ME PAIN." Maybe that would get his attention.

Oh well. Back to the waiting game... My appointment for the first round of prolotherapy is on July 5th.

Is anybody else as excited or anxious about all these needles as I am?

Can I Chew Off My Arm Yet?

Seriously, left shoulder, if you don't stop being such a jerkface, I'm gonna gnaw you off. Om nom nom.

Yesterday, I woke up with a really badly dislocated shoulder. It had been out of its socket long enough that I had lost all feeling in my arm. Throughout the course of the day, my shoulder just felt less and less stable, and more and more tense. The tension in my shoulder muscles pulled on my ribs until they too were dislocated. At this point, I figure out that the only way to put my ribs back in is to screw my shoulder up even more... So I did. I had to use my left hand to apply constant pressure to my ribs for about half an hour before they finally settled back into place, and by then my shoulder and neck were so sore, I couldn't use my arm at all the rest of the day. Blargh.

Less than a week until my Prolotherapy consult!!!! I am really excited!!!! Honestly, very few people would be this excited at the prospect of a bajillion needles being inserted into their everywhere. You know what's really stupid, though? Even in Canada, where we are supposed to have really great healthcare, this isn't covered, so I have to pay out of pocket for the prolotherapy. This is mostly due to the fact that it is an "off-label" use of the "drug" which has no medical research to back it up. I'll just let you imagine what kind of angry this makes me... They cover surgeries, which are unsuccessful more often than not, but something that actually works in 85% of the EDS population? No coverage. They pay for things which will make us worse, but not for those which will make us better.

I just received my forearm crutches today... They took so long to get here! But I have them, and if I need them, they're here. I just need to adjust them to my height, and we're good to go!

Help Jess Get a Wheelchair

Jess, over at Falling Apart At The Seams is in need of a wheelchair. Unfortunately, her insurance will not be covering it, so she is reaching out to us -the loverly bogging community- for help. Please help her in whatever way you can. If you can click on her link, and donate $10.00 that would be fantastic!



If you can't do that, please re-post, or facebook, or twitter, or e-mail, and help her by getting the word out!

I hope you all have a good day!

Gentle Hugs!

Spring Sucks... Blargh

Ugh... Seriously, weather? You can't just pick a temperature and stick with it for 5 minutes? We have to do the whole roller coaster of warm, cold, REALLY cold, warm again, rain, snow, hail, warm, cold, warm, cold, and WINDY, holy crap WINDY!!!

Jeez... I'm feeling the weather in every one of my joints, and I'm in so much pain... I fell on Tuesday, after I got home from work. I was standing in the hallway, so there's like 2 1/2 feet of space that I crumpled into when gravity took over... And being me, of course I had my back to the wall when I fell, so I had to crumple, instead of just falling over.

My feet bones, and ankle bones feel like they're just a mass of bones and tissue, being loosely held in place with bubble gum and hope.

I saw my geneticist on Tuesday, and he is willing to try me out on a really low dose Beta Blocker for my sleep/digestion issues. But he wants me to check my heart rate before bed for 5 days, to see if my heart does wonky things. Last night, it was 92 bpm, and the night before it was 82 bpm. My normal resting heart rate is about 60 bpm, or a bit lower, so I found this quite unnerving. He checked my pulse while I was sitting, and had me stand up while he was checking, and he noticed a rise in heart rate. We both think that my sometime-in-the-possibly-not-too-distant-future appointment with a cardiologist will be the best time to bring up the tilt-table test idea, instead of referring me to another cardiologist, where I would be put on the bottom of another waiting list.

I was telling him about some of the new studies being done on EDSers relating to Chiari, POTS, CCSVI, and normal pressure hydrocephalus, which he hadn't heard about yet, and he said it might help him with diagnosing another of his patients! Yay!

We also had a conversation about the severity of my EDS symptoms, and that it is possible that I might be having a harder time conceiving than other EDSers because I'm a "new mutation" EDSer instead of an "inherited " EDSer. We also talked about Prolotherapy, and he's referred me to one of the 2 docs I mentioned in my city who've been trained by the Caring Medical staff in the U.S.. 

Aside from that, I've been sleeping like crap lately... Pretty much since December. It feels like I just can't get the quality (or quantity) of sleep that I need, and I am waking up in more pain than I fall asleep in, and it's harder to get going in the morning.

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.