SmartCRUTCH notes!

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Last night I did a Facebook Live stream all about my crutches. It didn’t go as well as planned as I had a bunch of photos that I wanted to use in my descriptions. It turns out you can’t put photos in the comments of a video (live or otherwise) which was not only so annoying but it meant that I got tongue tied and stressed 😦

Anyway, so I said I’d add the photos here for you all to see! So if you missed the video it is HERE. And if you watched it but need the pics, here they are:

 

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Me with my gutter crutches! (note that my left wrist is bandaged! Could never do that with the other two kinds of crutches!)

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How much better are the SmartCRUTCHES!!!

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Some direct comparisons (note the velcro and the bolts that kept coming undone!):

Even the base is better and more stable (the SmartCRUTCH is on the left):

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Seriously, look at that wear and tear (there is none after 2 years, being chucked around and smashed through customs and baggage handlers through HongKong, Los Angeles, Cape Town x6, Perth (Australia) x 5, Dubai x6, Rome, Tuscany, London x2, Johannesburg too many to count, and that doesn’t include everyday use, being dropped and stomped on hundreds of times, chucked in the back of the car even more times… and so the list goes on!

And they come in 3 sizes, here are the middle and baby sizes:

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And finally, the gorgeous ZEBRA crutch for EDS!! WOOHOO!

Check out SmartCrutch and The Ehlers-Danlos Society for details and don’t forget to tell them I sent you!! 🙂

Zebra Crutch!

To book a talk with me and discuss my schedule you can contact me on JPeaSmith@KingsRoadChronicles.com

Where you can find and follow Jennifer: 

@JPeaSmith
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My Smart Crutch Crush!

Crutch Options

As many of you will know, I ditched confentional crutches for good reason, use a SmartCrutch wherever I go, and it has been life changing for me! I am not paid by the inventors or producers or any of the companies who sell these crutches, to use, talk about, or advertise them in any way, shape or form. I talk about them a lot because I believe in them, and they are in most of my photos because they go everywhere with me. They have become somewhat of an extra limb for me. They protect me, and they give me the ability to walk a little most days.

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I am also a little biased, and proud, that they are locally invented and produced, right here in South Africa!

I decorate them, I travel with them, I walk with elephants with them, and they have become a part of me!

So it is my honour and great pleasure to announce that I am now partnering with them to help get word out there, to show them off, to recommend them, and to help anyone with questions on how to get them, how to use them, how to decorate them and how to make the most of them.

The best way to do that is to ask me directly, so please join me this Thursday (May 25th) at 8pm Johannesburg time (7pm London time, etc…

I will be unveiling the new Zebra SmartCrutch in honour of May being EDS Awareness Month, I will be showing it off, and answering all your questions! SmartCrutch USA  will be joining us for the Facebook Live Stream, as will the inventors and producers of these amazing products!

So put this in your diaries, or even better, respond to THIS event on Facebook, and follow my Page so that you will find us easily. We look forward to seeing you there!

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To book a talk with me and discuss my schedule you can contact me on JPeaSmith@KingsRoadChronicles.com

Where you can find and follow Jennifer: 

@JPeaSmith

The Launch of Southern Africa’s First Official EDS Group!

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I am SOOO excited to announce the launch of a brand new group today! It is 18 months since I was diagnosed and one of the things that I’ve struggled with has been finding fellow zebras here in the one place that is covered in real zebras… Southern Africa. I found the odd one here or there at the beginning but I needed a group to belong to and didn’t have the resources to start one.

Fast forward 18 months and a little while ago,  a wonderful and determined lady called Tina contacted me. It turns out that she also has EDS and she has been doing a lot of hard work behind the scenes putting in way more work searching for people than I ever did.

So suddenly, almost out of nowhere (for me anyway), thanks to Tina, and with the help of an amazing bunch of zebras who have connected, shared, made themselves vulnerable, and come together in such a short time, we have suddenly, in the first week of EDS Awareness month, become a Dazzle all of our own! What’s a Dazzle you ask? Well, a group of zebras of course! Why Zebras? You can read all about it HERE.

We are too small still (being rare and all) to have any funding whatsoever, or to have our own website so this will have to do for now. But Rare Diseases South Africa have been and continue to be, a great support and you can always contact us here on this blog or email me on JPeaSmith@KingRoadChronicles.com for more information.

Over the next few months, I will have the huge pleasure of sharing many of the stories of all these new women here as guest bloggers, in their own words. So please follow us and share the love and awareness!

And by the way, EDSZSA is quite easy to say, just squish the “s”s into the “z” and you get Edza 🙂

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If you live, work or are a citizen anywhere in Subsaharan Africa, and have or suspect you may have Ehlers-Danlos Syndrome, then give us a shout, comment below, or ask to join our closed (and safe) Facebook Group.

@JPeaSmith

My Lisfranc Injury!

In January this year I tripped on a suitcase in the middle of the night, and twisted my left foot. It was a silly and very simple fall but it was also extremely painful, and for the next 12 hours I couldn’t stand, and as we were going away for 10 days from that afternoon, I didn’t want to take any chances, and so off I went to ER!! My concern was that because I couldn’t weight bear at all (NWB), something could be broken, and so they did X-rays, and assumed that the sound of hooves was a horse (sprain), and sent me home to rest it and heal. After two month and no healing they did X-rays again and came up with the same result. Two months AGAIN (now at four months!) I was ready to pull my hair out! And when my husband decided to be “helpful” and massage my foot, it instantly became about ten times worse (we now know because it was dislocated and by massaging it he stretched the tendons even more and made the dislocation worse!).

Thankfully I have an amazing GP, who knows a good Orthopod who although fully booked for months ahead, said I could zip straight over and he would see me in his lunch break. He took one look at it and said it’s Lisfranc Injury (LFI)! I had never heard of that, and neither had my GP, or any of the other medics that have been involved over the 7 months since January! Knowing that the bones were dislocated was a CRAZY thought, especially after so long, but it made total sense to the level of pain that I have experienced constantly since then, but it didn’t fully explain why it wasn’t getting better.

This is a Lisfranc Injury:

http://ezinearticles.com/?Lisfranc-Fractures-and-Dislocations—Sourcing-Useful-Information-About-Lisfranc-Injuries&id=7896901 )
So the other community that I have been a part of since late May, is the Lisfranc Injury community.

https://www.facebook.com/LisfrancFractureClub?fref=ts )

Between myself and my GP we then went on to do a TON of research into LFIs, and it made total sense that it had been missed! Basically, it’s another Zebra, even in the most robust of people. If the injury involves a broken bone then obviously it is picked up on an Xray and dealt with, but for dislocations, the radiologist firstly needs to know what an LFI is (most don’t because it actually so rare!!), and secondly, the bones in this part of the foot are so small, and the gaps between them even smaller, so a few mm out of whack is very difficult to pick up when you are looking for a break, and so LFIs are documented as being the most misdiagnosed injury there is!! They are also extremely rare! Talk about being a Zebra! And that is with normal healthy people!!

So while the dislocation is only a few mm out, a bone that is out of place is painful whether it is a little bit out or a lot out! It hurts like hell, and has been constant for 7 months now, and been 10 times worse since it was lovingly massaged in May!

LFIs are not only extremely rare, and THE most misdiagnosed injury, but they are VERY hard to fix and take a LONG time to heal. The emotional as well as physical toll is massive. In a healthy, normal strong athlete with an LFI, these are what to expect:

“After [surgery to put in pins and plates etc] of the Lisfrancinjury, the patient is placed in a bulky, compressivedressing with a short-leg splint and is kept non-weightbearing. Approximately 1 week after surgery, the suturesare removed and a fracture boot is applied with the patient who is kept non weight bearing for a total of 6 to 8 weeks. Pins are usually removed in the clinic6 weeks postoperatively. At approximately 8 weeks post-operatively, progressive weight bearing in the boot isbegun, and the transition from the boot to a rigid-soleshoe occurs as the patient tolerates. We generally removethe Lisfranc screw around postoperative month 4 to 6,depending on the radiographs and clinical course of theathlete. After recovery from the implant removal, theathlete can begin to return slowly to athletic participationwhen strength and conditioning permit.”

In other words, up to 12 weeks on crutches, and up to a year or more before final results, and often longer…. And this is with normal healthy people, never mind people who also have EDS.

So while we are walking (not literally 😦 ) the EDS journey, at the same time we need to deal with the LFI itself. It was the “accident” that happened to my foot, but it was so bad from something so simple because of the EDS and it is also not healing at all because of the EDS (even though in the normal LFI timeline, I am not THAT far off track, but it should have improved maybe a little??)

So the questions that the Orthopod and my GP and I are facing are these:

– Do we do surgery to fuse the bones together for a relative chance of success? Or do we not touch it because the chances of surgery doing more harm than good in a healthy foot are not that great so will mine be even worse? I fell and landed on my wrist 15 years ago, and the injury resulted in “trauma induced carpel tunnel syndrome”. Normally Carpel Tunnel CTS) is something that happens over time and gets worse and worse, sometimes requiring surgery to release the pressure on the nerves and tendons and reduce the pain. It is a condition in it’s own right. EDS patients are prone to Carpel Tunnel pressure anyway because our tendons are too stretchy, but sudden onset from a “trauma” is unusual for anyone, even us zebras. Hence when I fell, the doctors all heard hooves and assumed it was a horse, and my Carpel Tunnel wasn’t picked up for five months when my wrist didn’t heal and I eventually had an MRI. They were surprised that such a small fall had produced such a major trauma as the CT, but they did the surgery, and then assumed I would get better … which I kind of did eventually, after a total of 11 months in a cast and many years of physio… when it never healed properly, it was put down to just “one of those things”…  so we are nervous about how much my injured foot is even able to heal, and whether or not the surgery will do more harm than good as with some of my other surgeries!

– If we do nothing though, and the dislocation cannot fix itself because the tendons aren’t strong enough and the arch has already collapsed, then will it never get better? My wrist took surgery, physio and years of totally protecting it to heal (and only to about 90%), and I cannot give a foot 3-5 years of complete protection in a cast with NO weight bearing at all! … it would mean NO walking (and that means NO walking even to the loo in the middle of the night etc) AT ALL!!

– My other joints can’t share the load and keep my foot totally off the ground with any crutches, so NO WEIGHT BEARING for 3-5 years means 3-5 years in a wheel chair! That just feels crazy! … and what level of success will we have after that anyway?
So there are two very separate yet intertwined health issues right now. They are both Zebras, and there are very few experts in either. One is the underlying EDS, which has no cure, and no chance of improving, yet is not degenerative as such… and the second is the LFI which all of this year and for the foreseeable future, is keeping me off my feet.

Over and above the EDS pain, the arch and bones in my left foot have already collapsed, and have now been dislocated for 8 months already and because of the EDS my tendons aren’t strong enough to bring them back into place, and surgery to fuse them into place is very risky … so until we come up with a better solution, my foot remains VERY painfully dislocated!

If you want even more detailed info, here is a great article with lots of detail 🙂

http://thomasclantonmd.com/wp-content/uploads/2014/01/treatment-lisfranc-injuries-athlete.pdf

Going Home to Rot on the Couch!!

Usually diagnosis goes like this:

Patient feels something wrong (something hurts, or looks wrong, or won’t work etc) … so they go the their GP. Doctor examines, asks questions, and does one or more of the following:

A: Makes a clear diagnosis, followed by prescribing some for of treatment, (which may or may not include home remedies, rest, medications, splints, creams etc)

B: Doesn’t know what the cause is so makes a recommendation to see someone who DOES know what is going on … usually some kind of specialist in the field that he or she suspects the problem lies, and sends the patient on (and may or may not include some advice on how to survive in the mean time) …

Sadly however, many doctors, including specialists, have either never heard of EDS, or worse, if they have they know very little. And a little bit of knowledge can be worse than no knowledge at all!! But a little bit of research (sooo easy in this day and age of the internet!!), and a little bit of empathy, can go a VERY long way!

Yesterday I made an appointment to see my GP and I was shocked at how petrified I was of seeing her! It isn’t even two weeks since my diagnosis, but I have lived with the symptoms of my condition my entire life, and I am SOOOO exhausted from dealing with the unknown, and not getting the care that I need! After 8 months in agony from this very minor fall alone, and 3 months in a moon boot and the rest of my limbs folding under the weight of having to take up the slack in my foot (literally!!!) I took myself off to a Rheumatologist (a Rheumatologist because I suspected that there is something wrong with my tendons and ligaments). A fabulous nursing practitioner in ER also suggested that a Rheumatologist would be a good option, and so I grabbed that lead and went for it! It “only” took two months to get in with me being available when she had a cancellation, and I was surprised yet not surprised at the diagnosis, (surprised to get something concrete for only the second time in my life!!! But at the same time not surprised that it was something wrong with my connective tissues, because for the first time in my life my VERY THICK medical file made sense!). But at that point I knew almost nothing about EDS. So I asked her what happens next and when does she need to see me again, and she brushed me off and said I don’t need to come back, as there is nothing that can be done!

My GP said I am being a little melodramatic saying that she (the Rheumatologist) sent me home to rot on the couch, but really, I had NO information, I couldn’t walk without crutches and the crutches that I had were absolutely abominable to say the least! …. I had no plan, no idea what I was going to do next, and if I had taken her advice that there was nothing to be done and I can’t get around on my own, then what else would I have done but gone home and rotted away on the couch!!

Instead I went straight home and started my own research, and within 24 hours I had decent crutches, joined an on-line EDS community group, had a gazillion questions answered by an AMAZINGLY wonderful bunch of people who are walking this path before me and behind me, and it has REALLY made me wonder how many doctors who know anything about EDS have this much knowledge? EDS is supposed to be rare, but I have now heard it said over and over that it is actually not so much rare, as rarely diagnosed. So I broke down my body into a simple list and what and who needed to happen for each one to be addressed, to make the most of what I still have and prepare for what is to come, but I can’t do it all on my own. Yes I can research and find a decent pair of crutches, but I don’t have a medical degree, and I can’t write my own scripts. I realised that what I need is a primary care doctor who can help me with the overall picture, someone who can tweak my list and add to it, send me in better directions that I would ever have thought of, and support me in the areas that I have come up with myself…

I have lived with such pain for all of my adult life, that I had already set up some basic survival tools, without even knowing why. My biggest tool is my hot baths each night before I go to bed. Because I had NO idea what I was actually living with, I felt as though my hip pain was in my bones. I felt that because the pain was so deep, and a heavy kind of pain that I suspect people with arthritis in their hips feel. A HOT soaking bath would ease the pain most nights in order to get enough sleep. Most morning I would still wake up with my hip at the very least in pain, but at least I had mostly slept through the night! I also feel the cold terribly and worked out by the time I was thirty that my body does not regulate its own temperature very well. So a hot bath that warmed me to the core was always vital for my sleep, which seems crazy because even in the heat of summer I needed this for pain management, but then would need the fan on so that I don’t over heat in the night in summer!!

So I already have many very effective strategies in place which are very helpful, but I knew very little medically about my pain, why I have it and what can be done about it, and knowledge of these things makes control over them WAAAY more successful! I had already taken up swimming two weeks prior to diagnosis, to get my muscles back from wasting away in a moon boot for over three months, (and when I mean swimming, think doggy paddle and treading water, nothing more!!) but in those two weeks because I didn’t know that my joints were overextending, in that VERY basic and short swimming time, I had already subluxated both a knee and the other hip!! But knowing everything that I know now (and am learning every day), I changed that exercise to even further reducing strain, and I haven’t popped anything in the 2 weeks since!!!

In my EDS community group, the thing that scared me the most, was reading about the general lack of empathy and willingness to learn by so many health professionals. From nurses to GPs to specialists. Many health specialists don’t like to think that they are wrong, or that they don’t know enough, and in my long and complicated experience, the VERY best who have cared for me, are those who admit that they simply don’t know, and we find out together … or they find out for me, … or they send me to someone who might know! NO ONE has ever even suspected EDS and when I look back it makes me feel a little angry, as often it was staring us all in the face, but doctors are trained to think horses when they hear hooves, and to give some of them credit, there are some truly AMAZING and helpful health care professionals out there, and I have had the pleasure of working with some of them, and I am SOOOO thankful for them, but not one of them checked for EDS…

But the attitude of my Rheumatologist, the first person to know what is going on, the one “knows the most”, floored me! She clearly thinks that it is either nothing to worry about, or if it is then there is nothing to be done anyway! And THAT is simply not OK!! Below is a tiny sample of some of the examples of mistreatment that people in the EDS community have experiences first hand (and given me permission to share, as the group is not public for a reason) … and when you read them I am sure that you will understand my trepidation at meeting with my GP and asking her to come on board with me and do all that we can to keep me mobile, active, and as pain free as possible. I’m not stupid, I know that this can’t be fixed, and that I will likely never be pain free, but SURELY, in the same way that my hot baths can keep me from needing pain meds most nights, there must be other things that we can do to support this weary old bod!?!? Thankfully my prayers were answered and she was FABULOUS! She is not an expert by a long shot but soon she will be let me tell you!! After my whole life of having sooo much bad medical help, and now meeting a whole community who is by and large struggling to find a voice and get support, there was good reason to be fearful!!

Here are what just a small sample of my EDS community have shared of their experiences:

Cardiologist at highly respected vascular institute: “I don’t really know anything about EDS. A colleague once told me to look for thin transparent skin and prominent veins. I can’t even tell if you have thin skin. Do you feel like you do?”

 
“Well, you don’t LOOK sick ! You look healthier than most. You are too young to have all these issues !”
 “You certainly have alot of medical issues…so what brings you in for TODAYS visit ?!?!
 

From a geneticist: You can’t have EDS you’re not Jewish!

Neurologist from UCLA. “It’s not supposed to hurt”. Or “You don’t need help with your EDS you need help for your Borderline Personality Disorder!!”

From an orthopedist – “Your body does some weird shit!”

Also years ago in my GPs office from the nurse who had to take my blood – “I saw your name on the schedule today – couldn’t you have come next week when I’m on vacation?!”

New rheumatologist, fired after one visit: “I don’t know why you’re pushing for this diagnosis. There’s no magic pill” (I wasn’t there for diagnosis. I already have diagnosis and need help with pain.) Followed by: “Vitamin C will solve all of that.” HOMIE, YOU JUST SAID THERE’S NO MAGIC PILL!!!

Here’s another gem from that rheumy: “Your scoliosis isn’t severe enough to earn you a diagnosis of EDS. EDS people have really severe scoliosis and heart problems. You don’t have a murmur or aorta problems, so it can’t be EDS.” (Keep in mind my scoliosis is degenerative in nature. It wasn’t there 10 years ago when I was 20. 30 year old people do not just randomly come up with degenerative scoliosis!!)

You should run 3 to 5 miles everyday.

“There is no such thing as low blood pressure! If there was, human life would cease to exist” my ex doctor told me this and her husband is a cardiologist!

Dr: “You, Ms X, are obese! .. Lose some weight and your health issues will diminish.”…in reality, I ended up needing an aortic valve replacement. I was holding water retention , because I was in heart failure. OBESE …
 
I had an orthopedist, who had been treating me for years, tell me a year post dx that if I had EDS that I would have exhibited symptoms way before 43. The broken hip at 12, neck at 16, almost every joint on L side of body etc etc, dislocations since childhood, MCAD, nor dyautonomia count as symptoms.
 
I got told there was no way my hip had dislocated if I hadn’t been in some kind of accident. My ankle sublaxed while I was in hospital, a day after knee op when I hadn’t been able to get out of bed! (just from the weight of the sheets and blanket). They told me I had obviously tried to walk when I’d been told not to, and twisted my ankle!!!!
 
I reminded an OB/GYN of a Chevy truck. While on bed rest with my 4th!!!
 
My knee dislocates from pushing on the pedal while driving. “Well what if you just kept driving?” Then hands me a an article about how Hypermobility benefits musicians.

Zebras and EDS

I don’t know if anyone else has noticed, but many support groups use an animal or plant as a sort of “mascot” for their condition. An animal (or plant) that is “normal” and often beautiful and perfect in it’s own right. I get that! For example butterflies are deaf but that’s the way they are made, so it’s a lovely “mascot” for deaf people.

For EDS it turns out that we are Zebras! Many of you will know that I LOVE zebras, and have used black and white stripes in much of my art, I wear a bit of it (in glasses, accessories etc), from an artistic perspective I feel that it so well offsets my bright colours, and the bright colours make the black and white feel crisp and clean to me! I also have many throw rugs and cushions in Zebra stripes, and waaaay too many zebra quilting fabrics! I use them in all the African themed quilts that I make, and many of the Christmas decorations that I make too. I also love photographing zebras and have waaay too many of those too 😛

So when I joined a major EDS support group, I was not expecting that they would have an animal to represent them, but I was pleasantly surprised that they do, and that we are referred to as Zebras! But why a Zebra you ask? For two reasons:

ONE: The first reason is that EDS is so often missed, mainly because it is a relatively hidden condition, and as we sprain and dislocate our joints, they are treated as an individual (and often stupid or “terrible bad luck”) injury, and always as a result of falling, twisting, whatever. Doctors are (rightly and validly) trained to assume that when they hear hooves, it is a horse, not a zebra! This word picture is very common (I have now found out) in the wider community of rare or hard to pick up conditions. Sprains and the like are one of the most common injuries in even the most robust people, and stupid accidents happen ALL the time! When a patient arrives at the ER, and X-rays are done and show no breaks, and all the symptoms are there of a sprain (or even a dislocation), then appropriate treatment is advised, and the patient sent home. 99.9% of the time, it is simple and straightforward. How many times when you hear hooves do you think “oh that must be a zebra!” … the answer (unless you are my Ang LOL) is probably NEVER! If every ER doctor assumed that every single sprain or dislocation was a rare or complicated condition, then they would be wasting a HUGE amount of time, energy and money, not to mention enormous inconvenience and expense to the vast majority of their patients. So you see a sprain or dislocation (you hear hooves) it is right and valid to think normal injury (horse), even if done in a silly or awkward way) … and never to think of some crazy underlying condition (Zebra). So in the communities involving the kinds of conditions that are so easily passed by unnoticed, this analogy is often used… and I noticed that when referred to in those communities, it doesn’t need explaining…

TWO: More specifically to EDS however, is that no two patients are identical. It is exactly the same with zebras. The stripes on zebras are very much like fingerprints, each animal is unique! (and believe me, I’ve already done LOADS of looking for the past few years, and LOVE taking photos of and just looking at their stripes in the wild. The animals are all white, with black stripes, and they are all beautiful and certainly in families, there may be similarities but each animal is unique. There are about 4 kinds of EDS, (mine is Hypermobile EDS) and so there are differences in general there, but even within each group, there are HUGE variations. Apparently my hyper mobility is more pronounced in my top half than my bottom half. This is a good thing, because we need our bottom halves to hold us up! So for those with their bottom halves more affected than their top halves, they need crutches and then wheelchairs much earlier in life, and small children are often delayed in learning to crawl and then stand and then walk. Then because so much of our body is made up of connective tissues, I am SOOO thankful that in our family, our hearts are totally unaffected, whereas some have huge heart valve problems… bladder and bowel prolapses etc… so there is a set of tissues that fall under the EDS spectrum (not from bad at one end and good at the other, simply rather a list of stuff) and some have many on the list, others have some of this and a lot of that, or a little bit of everything etc. So even the four boys and I have very slightly different things. Then add to that the severity of each affected area, which differentiate us from each other, and then of course our individual experiences add to the picture. In other words I have had very basic falls and accidents that have affected one wrist, both big toes, one foot, and now the other wrist. Each accident has made that joint a part of my overall picture. My wrist did not affect my walking, but my toes and foot have!

So apparently I am a zebra, and that is why …

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PS: Not ALL doctors only listen for hooves, and so I want to make sure that those who are great at looking out for and looking after Zebras aren’t ignored!! They are VERY special doctors and nurses and care givers!! I have also heard it said that doctors in training are ACTUALLY taught to also think of Zebras, but I guess that many of them maybe forget after a while?? … they didn’t make a show like “House” for nothing, thinking about Zebras is not an every day thing!