Dentist Update:

Life sucks.

I love my dentist, he has really taken on the idea of my health issues, and he always explains what’s going on. Today was the second of about six visits in six weeks and it’s so taxing. Today, I was supposed to have two out of about a dozen new fillings, on the bottom left side. The second tooth from the back wasn’t included in the idea, so it was going to be one new hole and one replacement of an old metal filling.

Screen Shot 2018-02-05 at 20.35.54So we started well, though I always have to remind them that I have to have the special green anaesthetic and not the “normal people” blue and feel like a bother that they have to change it all in the machine. (The green one is the only one that doesn’t contain Epinephrine).

It’s one of those machines that sloooowly delivers the dose through a very fine needle on the end of a long tube. The idea, in theory, is that the pain in the delivery of an anaesthetic is from the liquid going in. So it goes in very slowly, which I am told means there should be no pain. But as much as I try not to, I instinctively flinch when the pain shoots up the side of my face like lightening-bolts past my ear up to my temple.

When that was done he asked me what on earth that flinching was all about, and I sheepishly explained it to him. He started saying “what on earth?…” but as I ran my finger along the line of the pain, he changed tack to “Aha” and explained that about 15% of the population have an extra nerve branch called a Retroauricular Branch that runs up there, and sadly I have one. It is neither a good thing or a bad thing… till you need your teeth numbed at the dentist and right at the place where the needle goes in you have this extra nerve and the needle pokes it! I can’t tell you how much it hurts and because it is a slow process, it isn’t fast either 😦

On to the fillings and he quickly realized that the tooth in the middle of the two he was working on was in trouble, so instead of two fillings I had three, and the middle one was MASSIVE. And it hurt. Which it shouldn’t. But it only hurt (a LOT) when he drilled on the one side. And as it was the biggest job of the day there was an awful lot of drilling.

Afterwards, he told me that on rare occassions some people have an extra nerve running up the outer side of that middle tooth. It’s not part of the same nerve that’s numbed so it isn’t protected. Really? Two extra nerves, neither of them part of the numbed nerves? And an extra filling? And of course my jaw dislocated through the process but we knew that was coming and there’s nothing around that.

So I’m feeling a little sorry for myself today, and while I feel like I’m a little on the raw end of this particular deal in life, I’m thankful that for the first time it makes sense! I have been told all my life that I’m being a baby and it can’t hurt, but suddenly I can explain why. I even got a wee moment of empathy from MrS (or was that him just cringing at the thought of it himself?).


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A Despicable Excuse to Touch!

I didn’t get very much sleep last night, and what I did get was wracked with nightmares. You see, the last thing I did before turning off the light was skim this article on the EDS Society Facebook page. I didn’t do that intentionally, it’s just what happened to pop up on my News Feed as I was closing down.

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In an instant, it brought back one of my own nightmares, and that was the end of any illusion I had that I could get some rest. Nights are difficult for me anyway. Every night is filled with deep, excruciating pain and discomfort so I have to manage my fragile environment in all kinds of minuscule ways; are there no cracks in the curtains? Are the right meds within reach? Do I have the pile of pillows on hand ready to prop joints in the dark when they strain or pop? Are the extra blankets within reach if the temperature drops more than a couple of degrees? is there water by the bed? And I need to decide which level of pain and sleep medications will I take before turning off the light.

Despite taking the strong meds I tossed and turned, flung pillows, and moved them constantly. I overheated and shivered in turn, and did something I never do, I took a second set of medications in the wee hours of the morning, knowing that that could well have consequences to the day ahead. But I desperately needed an escape that didn’t come, from my nightmares, ….and even more desperately I needed sleep.

Over twenty years ago, as an extremely naive and fragile young wife and mother with a family history of skin cancer, we had just moved to a new city and I needed to find a new doctor for a skin test. I’d been having them every second year for about a decade, and while in theory I was supposed to have them annually, I already had so many as yet undiagnosed health issues that finding new doctors filled me with dread and fear. So I was behind schedule already, and I had the extremely rare opportunity of having my mother-in-law in town, so I convinced her to look after the babies while I headed to the local GP for the first time.

I was used to skin tests, and with a variety of doctors and specialist. I was used to stripping to my underwear and lying on the examining table with a sheet to cover the bits he or she wasn’t currently checking. I had never been asked to remove ALL my clothes, as most underwear allows movements to the left, right, up or down, to cover every inch of skin. I’d I’d never been left without any kind of covering.

So I was left a little disorientated and uncomfortable when the young doctor insisted I remove EVERYTHING. There was nothing to hide behind, nothing to protect my dignity in any way shape or form, and I felt extremely uncomfortable and unable to protest without feeling like an idiot. I felt humiliated and vulnerable and exposed. I didn’t know what to do with my hands and I desperately wanted to cover as many bits as possible.

But there was nothing I could do so I gave myself over to him and closed my eyes, trying in vain to disappear to somewhere else in my head. I wasn’t all that good at doing that back then, and it wasn’t working, but I concentrated with all the strength I could muster. So when he suddenly spread my legs and proceeded to do an “internal examination” I got the fright of my life. I didn’t even stop to think, I instantly pulled away and protested, but he was insistent and told me he needs to check for suspicious moles on ALL skin, internal as well as external.

I could barely breathe, the level of violation became extreme and I felt totally powerless. I don’t remember getting dressed, paying for the privilege, and getting myself out of there, but I arrived home a mess.

My mother-in-law (a prominent Psychologist) saw immediately something was wrong, but I first needed to phone my husband and ask him to come home, then phone the local sexual abuse hotline. I spoke immediately to a social worker who assured me that on so many levels what the doctor had done was wrong, even if some internal skin needed checking (though in the two decades since I have never experienced it again). She gave me instructions on going to the police station to make a formal complaint on the day it had happened and talked me through the process.

I then told my mother-in-law what had happened, whereby she proceeded to scold me severely. She told me that bringing this onto my husband would bring him so much unwanted stress and added responsibility. That I needed to spare him the journey ahead and that if it led to court charges and court case, it would be an awful journey for my husband. She made it very clear that she would not be supporting me if I proceeded and that she would not encourage my husband to either.

I decided anyway that I would like to speak to a policewoman and so my husband drove me to the police station. I told her my story and she responded by telling me not to waste police resources, and that they only dealt with “real rape cases”.

I went home feeling more humiliated than ever.

And so it was decided by the authorities and those that I trusted and looked up to, that I would say nothing, do nothing, and that I would spend the rest of my life in silence… until last night!

I was 24 years ago in another city and another country, a lifetime ago… But it has simmered deep in the background of my soul till today. The violation, the humiliation, the control, the betrayal, … My heart breaks for those women in the article and their bravery at standing up to tell their stories for all the world to hear and see brings me to tears of thankfulness! Could I have been that brave 24 years ago? And if I had been, would anyone have listened??

PS: I’m so proud of myself, looking back, after the trauma of the incident as well as the compounded trauma of being forced to squash it, that nonetheless, I phoned and made a complaint to the AMA (Australian Medical Association) which I followed up with a written letter. In a small way, I spoke up.


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Dressing For the Dentist: Part One

The last week I’ve had 2 dental appointments, and for anyone who has to deal with the medical profession on an ongoing basis, there is often much trauma, anticipation, fear, and “Vulnerability Exhaustion” involved. So I decided to garner a little bit more control and security than usual for this first appointment of the new year, and I dressed for the occasion!

img_4272I took the time to prepare well and I’m so glad I did. Dressing up for doctors or specialists was the last thing on my mind, but dressing for my comfort and safety is a different thing altogether. I made the following list the night before so that I didn’t have to plan it all as I was rushing out the door (I was reminded of what a good idea this was as I found myself with only one sock on). It’s easy to underestimate how frazzled we are in the moment.

1: Dressing for personal space & dignity:

(clothes with windows)

I tend to wear “stretchy” when it comes to anything to do with doctors and tests and so on. But believe it or not, stretchy sleeves don’t always pull up high enough for blood tests and BP readings. I’ve therefore sometimes had to remove my whole shirt for these simple procedures which are often done in places where there are a lot of people around. I felt very exposed and embarrassed, which added to my already rising anxiety and lack of safety.

The same applies to the legs. Jeans rarely ride higher than a few inches, whereas stretchy pants can often pull way up past the knee. Stretchy as well as skinny, however, does not. Exposing my underwear and all the bits that try to jump out of them are not helpful to knee specialists and physios, and leave me with a level of discomfort that I don’t need on top of everything else. I’d really rather not take my whole pants off!

Check Points:

  • I check the stretchiness in advance if I’ll be relying on it for windows.
  • Cardigans are the ultimate in clothes with windows, they can be left wide open to cool down, taken off in a flash, and wrapped around for warmth.
  • Socks with footless tights become windows instead of full tights which need to be removed in full (along with whatever is over them!).
  • While buttons provide great windows, they can also be complicated and slow when changing. They also require a bit of thinking as you can do the wrong ones up without noticing! Press studs and zippers or wraparounds are great alternatives.
  • A button-up shirt can mean exposing only a small part of me, but the same shirt, however, under different tests and circumstances can also pop open and reveal bits I’d rather not show. I want to pick my windows!
  • For the same reason, I don’t want shirts that pop open or ride up (or down), therefore, I’m usually a little more generous with the amount of fabric in my clothing than I might otherwise be.

2: Watch the head!

This is probably the worst area for me and the space in which I have struggled the most! Whether it’s in a cubicle before a test, sitting in my GP’s office, or waiting in a long and public hall in a hospital, there is nothing that makes me feel more bedraggled and out of control than a shirt that needed to come off over my head! My glasses have got stuck, flung off, and bent… my hair has become static and flyaway, ponytails have come out, earrings have become hooked, lipstick can smudge, phones fall out of pockets, I have become disorientated and dizzy, and I have even hurt myself bumping into the wall or a chair I didn’t know was there. The list of things that can go wrong is endless, and while they are usually not earth-shattering, they can go a long way to feeling dreadful when you are already feeling very fragile or weepy.

They don’t help us to feel like we are being taken seriously either. It makes a difference to me when I can look a doctor in the eye as I’m talking and removing my clothing at the same time. Try feeling like you are being taken seriously when talking through an upside-down shirt covering your face! It can be thoroughly dishevelling, and difficult to walk out with the same dignity with which I walked in! … I FEEL more vulnerable and exposed when and after removing clothes over my head than anything else.

Check Points:

  • It sounds crazy, but if the best option for me is something that needs to be taken on and off over my head, then a practice run is always the way to go. Making sure I know the shirt, pick something with a neck that stretches far, and knowing that I can whip it on and off easily and quickly is a game changer.
  • Again, if it has to come over the head, then I always avoid necks with buttons and zips.
  • We will discuss jewellery separately, but if going with the over-the-head option then necklaces and earrings become a massive catch point and need to be left at home.

Next up… dressing for the cold, which underwear to choose, clothes and hospital and anxiety, packing your bags and much more!


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How the Dentist Went!

img_4162Well, I cannot tell you how petrified I was going to the dentist this morning!! It’s hard to tell in the photo (ever tried to take a pic of teeth with a phone???), but that crack goes all the way to the gum and it’s right through to the back. I’ve already lost a tooth because it cracked below the gum line, so I wasn’t holding much hope for this one.

I had also stopped going to the dentist because I was feeling I was getting nowhere. Mr. S goes to the same dentist I used to go to, and he’s happy but I’ve had two (yes TWO) fillings done twice over in the last decade or so, so I wasn’t feeling confident in him anymore. After my EDS diagnosis, I was sent to a “gentle dentist” to replace my old metal fillings. He did one-quarter of my mouth last January and I spent the next 3 months in agony and didn’t want anyone to touch my mouth again EVER.

That was till this happened over this Christmas!

Here is a quick sketch of my mouth, and that crack is through my right Lateral Incisor.

Dentist pics 01

I had no idea where to go, or who to trust, I am soooo burnt by doctors who are stumped and their pride gets in the way of real help. But Mr. S convinced me to go back to my old dentist and amazingly his wonderful PA welcomed me back with open arms and found me an emergency appointment.

Dentist pics 03I don’t want to bore you with basic Biology/Dentistry, but I knew the basics of teeth as this: Dentine (or Dentin in the US) makes up the bulk of our thinner front teeth, with the pulp & root at the very centre, and a thin layer of Enamel covering the part of the tooth that’s not hidden by the gums.

Enamel has NO collagen in it. Dentine, on the other hand, is mostly collagen…. and I was born with stuffed collagen. It’s too soft. I knew this, but most tooth pictures show the big fat back teeth which have much thicker layers of enamel.

So, anyway, between my natural fear of dentists, my fear of him not being able to save the tooth and what the outcomes of that could be, my fear that they will forget and there’ll be adrenaline in the anaesthetic (which is there is in all standard locals), and my worse fear that it will wear off too quickly without it (as usually happens, and they stitch me up without any), I couldn’t see this was going to go any way but badly.

I started by explaining that since seeing him last I’ve been diagnosed with EDS. I explained that more importantly, it’s a connective tissue disorder, and that my collagen is not as strong as it should be. He responded by pulling out his book of conditions and of course, it’s too rare so it wasn’t there.

But then he did what I have rarely seen a medical specialist do and he put the info he had together and went with it! He used his brain and on the spot worked out what was going on! I was so impressed I wanted to cry!

He said that the “crack” is right on the line of the filling that he did there 3 years ago, and that while yes, it goes below the gum line, it can be redone. He said that it isn’t a crack at all (even though he could wiggle the piece!!), but that the filling had  “debonded” (rejected, come unstuck) from the tooth! The bond of the filling was mostly with Dentine, which should be rock hard, but if it isn’t, then it can’t bond.

It might not be great news, but at least it makes sense now, and also explains why the other filling near the front of my mouth took 2 goes as well (and may need doing again). He said the cheapest option would be to replace the filling, which may not hold long-term of course, but both crowns and caps require filing back the enamel and bonding with the dentine, which would be a disaster in my case. An implant requires surgery and strong bone structure which of course relies on strong collagen in both the bone and the gum. So basically, we need to avoid implants, crowns and caps at all cost. Things which may be great for other people, but basically we have no option but to go with the simple filling.

The bad news is that this is going to be a problem long term, and I know EDSers who’ve lost all their teeth as early as 39. I’m passed that already but still, I have a mouth full of pain and it’s not likely to ever get much better. But at least now it MAKES SENSE which it never has before. There is a level of comfort in that.

Dentist Pic 04The good news is that he said, “well, we just have to make it stick more” and as he cut away the old filling to expose the raw edge of my tooth again, one normally leaves a sharp “flat” edge. But he decided to file away the edge of the enamel so that it has a bevel edge! While still being a very small surface, it’s twice the surface it would otherwise be! How clever, talk about thinking on your feet and making a plan!

The other thing he did is smooth some of the filling material so that it is overlapping some of the rest of the tooth. The idea being that the filling is now using way more of the enamel that it would have, and we have a chance of it lasting much longer this time. So the new tooth is slightly bigger than it was before and we’ll also have to keep an eye on that, but hopefully, it’ll be fine.

For how long? Who knows, and I think I’m going to be a bit paranoid about using that tooth, but I’m paranoid about so many of my teeth now that I’m running out of options 😦


I have hope for the first time in a long time. And a few more answers!

So I’m going back on Tuesday and he’s going to check out the rest of my teeth and see if there is anything urgent and hopefully fix whatever it was that the stupid guy a year ago did.

I am pretty sure it’s the first time EVER I’m excited about going to the dentist!



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Which draws blood?

This is a follow-on from THIS story, where I tried to explain that it is not the obvious that breaks me. This is another really tangible way I can explain what it likes to have my particular Connective Tissue Disorder.

An Orange, or pair of scissors … which one draws blood?

I love scissors. I don’t know what it is, but cutting paper, fabric, anything really, brings out the creative best in me. A bad pair of scissors is a nightmare for anyone if they don’t cut well, dig into the skin etc, but with a good pair, one that fits my thumb and forefinger perfectly, I can spend hours cutting and I’m fine.

But I have never been able to peel an orange. There is so much about a connective tissue disorder that is very hard to measure, but orange peel is a great example of something that is measurable for me. When a healthy person digs their fingernail under the skin of an orange, even the most resistant peel will always give way before the fingernail gives way from the flesh of their finger right?

But for me, it is the other way round. Even the softest peel sticks stronger to the flesh of the orange than my fingernail sticks to my finger. It is always, and by always I truly mean always, the peel that wins and my fingernail that loses. It is extremely sore, especially as the acidic juice gets into the bloody wound…

So all my life I have either avoided oranges altogether (which I have become allergic to anyway, but that’s a story for another day), or used a knife and spoon to peel them.

You know how you physically cringe when you think of stubbing your toe badly or slamming your fingers in the car door? That’s how I feel at the mere thought of peeling an orange!

Invisible illnesses and conditions are very hard to measure; Pain impossible, along with his ugly cousin Fatigue.



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I would never in a million years have guessed that I would find a home on YouTube! I am quite sure that even in as short a time as a year I am going to be mortified at how bad the early videos are, but right now I’m just a little bit proud of some of them! Some are short like this one HERE, but others like THIS ONE where I actually TALK (shock horror!! Do we all hate the sound of our own voices?) are longer and much more involved. But when you spend most of your life shut away from the world and can no longer teach in real life anymore, this has turned out to be an amazing solution for me!

I am growing ever so slowly, but one video at a time I am collecting a few subscribers and comments and feel like I’m actually having some sort of an impact in the world, as small as it is!

I created a Facebook Group to support it, and it is growing even faster… so please check it out HERE?

If you’ve missed this little endeavour I would SOOO appreciate your support!

Thanks as always 🙂

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5 Ways to Derail a Friend’s Grief Journey!

Grief, anger, loss, adjustment, acceptance. These all become unwanted bed fellows with any long term illness, whether physical, mental, visible or invisible. We become unwitting experts along our journeys, and for many of us, these are daily failures, wins, and struggles. The wins are hard-earned, the losses can be crushing. It is deeply personal space with fragile boundaries.

For me, this grief process appears to be one of the few spaces in life, along with parenting, where everybody has an opinion, everybody appears to feel the right to give unsolicited advice, and no-one thinks twice about the consequences.

And sadly, the more experienced in the grief journey we are, the more forthright we become, and the more qualified we feel to dish out “advice”. Somehow, many of us forget that it is a process, that the process is not linear, and that each of us needs to walk it in our own time and space. Supporting a loved one on any grief journey is tricky, sacred space. But there are a few basics on how NOT to do it. A few things those who have walked it before need to remember.

1: Don’t make it about yourself!

For the vast majority of people I speak to about any kind of grief journey, the first thing they mention is how lonely it is. They also speak of the treasured few who we there, right by their side. But they often carry a deep pain from all the people who let them down. I get that. It is my experience too. Our need to be heard and validated is very real.

So why is it that so many who have walked that journey already see someone new on that road and think “Oh, thank goodness you get it … here is MY story”?

Their grief journey is not about you. It is still about them. You may have a lot to offer and ways to make their journey better than yours was, but please don’t make it all about you.

Comments that begin with “When I ….” or “For me…” are perhaps signs that you have made it about you instead of them?

2: Don’t hurry them to the next step.

Grief journeys suck. They are awful paths to walk, and they hurt. But in lesser ways, they are awful things to watch too. Friends and family hate watching people struggle through step after step, after step, of a grief journey, and it makes them feel uncomfortable, powerless, and frustrated. It is so easy, therefore, to want them to come out the other end faster, it makes sense to want them to heal, or to learn all that you have learnt. But we need to remember that because it is a process and a deeply painful one that is not as linear as some people make out, it can’t be rushed. Rushing them disempowers them.

One of my biggest struggles, second only to how many friends I lost, and how rude people were, was around the space of those who knew better, those who have been down grief journey’s themselves, who pushed and shoved me to get through the other end quickly.

Comments that begin with “It’s time to…” or “why can’t you hurry up and get on with it…” can leave someone feeling pushed or hurried.

3: Don’t forget what it was like to be where they are.

Because much of a grief journey can be lost in a blur or forgotten in a strange time warp that protects us from the reality of so much time “away” from “normal” life, it is so easy to forget that it was a very long journey that we took ourselves. It may feel like forever ago that we were the carefree person of “before”. But the grief journey we took often feels in hindsight, to have been quite a fast one.

I can assure it wasn’t. It was slow and ugly and painful and hard for everyone. And when others walk it, we mustn’t expect them to “do” their journey any differently. This is the bit where we need to meet them at their point of need, validate the stage they are in, and hold their hands as they navigate their way through.

Comments that begin with “That’s not healthy to….” or “You need to…” or “I never did that..” are perhaps signs that you’ve forgotten what it was like to be in the middle of the fog yourself.

4: Stop comparing notes of any kind.

Who’s grief is worst? longest? Who’s issue was harder? Does a death trump an illness? Does a child trump an uncle? Who coped better or got better quicker? It blows me away that so many people diminish and invalidate a grief journey because it wasn’t quite as bad as their own.

Comments that begin with “Well at least you….” or “There is always someone worse off…” can leave people feeling as though you are comparing their journey to yours, as well as judging your process.

5: Don’t see it as stealing from your own journey.

It is so easy to believe that this is some kind of competition. Often, I see people behaving as though there is only so much compassion in the world and if they see someone getting any, they jump in and try to grab it for themselves. It blows me away and leaves me feeling very sad.

But I decided that this behaviour isn’t about winning as such, it is more a fear of invalidation. Those who don’t feel their grief validated sometimes try to squash the validation given to others.

Comments that begin with “That’s nothing…” or “yes but MY stuff on the other hand…” can come across to those listening that you are trying to steal their compassion for yourself.

It’s hard to look back on our own journeys, and for good reason, as there was so much pain. But remember what it was like to just need someone to sit with us, mourn with us, encourage us (silently or otherwise), and to validate the place we were in? We now have the opportunity to be that person for someone else…


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