Frightened of Losing Your Diagnosis?

img_8897-1Before diagnosis, the decades in the wilderness where I did not even have the words or constructs to understand my pain and exhaustion, never mind anything to understand them, it was terribly, terribly lonely and very, very frightening. I stumbled around in the dark and had absolutely no idea where I either going to or coming from. I am sure I did the old proverbial “walk around in circles” thing on many occasions without even knowing it.

Then came diagnosis. As I look back on the two years since then, the journey has been just as crazy. But it has been very different too. Diagnosis may be the end of one journey, but it is also the beginning of a new one. A way less lonely journey. Before diagnosis, there was just me. I had no tribe, and I belonged nowhere. Post-diagnosis, I have become a vital member of not only a tribe but an army. I am a Zebra, I belong to The Mighty, I am a team member of many groups, and I feel as though I contribute and make a difference in some small way. I have all the benefits of belonging to a tribe, and I no longer walk alone in this part of my life.

But that diagnosis keeps threatening to change. As each new specialist throws in their opinion (whether asked for or not), as criteria for diagnosis evolves and tightens, and as new discoveries are made, especially in genetics and science labs, the fear of being kicked out of my tribe is great. What would happen if I was told I no longer belong? What if was sent out into the wilderness again?

There are massive potential problems and complications for medical insurance and doctor options when losing the diagnosis, but in many ways, the scariest part is the fact that I would be back to where I was before. Out there in the desert again, a lonely leper.

But the reality is that the door to diagnosis wasn’t just about the specific diagnosis. It felt like it at the time, but in truth, it just led me to find a larger and more complicated tribe than simply the EDS Zebras. I belong to the Chronic Illness world which includes the undiagnosed! It turned out that I belonged to a whole tribe that I didn’t even know about but I didn’t know that they existed, never mind how to find them!

When Fibromyalgia was added to my official diagnosis, I wasn’t stumped and lost like I was after the EDS diagnosis. Instead, I simply popped over to the other “department” of The Mighty, asked around my “Rare Diseases” community, popped the questions on MY Facebook page instead of having to search for new people, and had more answers than I could cope with within the hour. If I was to lose my EDS diagnosis tomorrow, I would not be all alone in the wilderness again, I would simply slightly adjust my position among my comrades.

There are over 200 Connective Tissue Disorders (CTD) and every doctor, no matter their other opinions, agrees that I, and my children, all have a CTD. They also agree it is genetic as we all have the same symptoms. Most of those CTDs fall into one of a small handful of categories, and we are very clearly (thankfully) ruled out of most of them because they do have specific tests. The closest fit and the only category left are the Ehlers Danlos Syndromes, so while we still don’t fit very neatly into one of them yet, the doctors tell me it doesn’t really matter which one because we can’t fix it anyway.

And when I think with my head I know that for the most part, they are right. But when I think about it with my heart I get fearful and anxious. I can’t help wanting to be more of a certainty. I am frightened of being a “token” member instead of a “real” one. The memories of the wilderness are all too clear, and they haunt me in my weakest moments. Pleeeease don’t send me back out there to Leper Land! Pleeeease let me stay here in the safety of my tribe! I am a zebra, I always have been and I always will be.

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Where you can find and follow Jennifer:

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@JPeaSmith
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Meet Chrisjan, Guest post…

Today we have a guest post from Helene, who has so generously sent me her own story with EDS, and I decided that as she clearly written it from her heart and share’d so honestly, I will leave it in her own words and let her speak. For me, it is a huge reminder that life happens to all of us and that chronic illness gives no one a “get-out-of-jail-free” card from the rest of life’s challenges. In other words, you don’t get a chronic illness instead of other things, you get it as well.
Here she is will her gorgeous son Chrisjan:

Screen Shot 2017-05-30 at 5.10.49 PM“Good Afternoon, I am Helene and my son is Chrisjan and he is 13 and has been diagnosed with Hypermobile Ehlers-Danlos Syndrome or hEDS.

I have two children, my daughter is 15 and a wonderful child. Straight A’s in school since grade one. Chrisjan has been a bit difficult. Both my children were prem babies, my daughter at 33 weeks and son at 36 weeks, due to an incompetent cervix and cervical cancer. In 2009 their father passed away from White Matter Disease (early onset Alzheimers).
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We moved to Durban so I could work and have my children taken care of. In early 2011 Chrisjan showed signs of ADHD and we had him assessed and it was confirmed. He is on medication for ADHD and depression as well as Sleep Disorder. In 2015 just after I remarried I had to stop working as Chrisjan struggled a lot with eating and muscle wastage. Due to not having medical aid, we turned to the government hospitals for help where they did all the tests you could think of, from MRI to EEG, ECG to numerous blood tests, and we found out November 2016 he has EDS.
He has been stopped from playing all sport in 2015 already and he loves his sport so much. In October 2016 my husband had a seizure and was paralysed on his left side. He lost his work due to it, at least he can walk now but He has a heart condition which is still under investigation and has been diagnosed with Functional Neurological Disorder. I have been looking for work but it has not been easy.
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Chrisjan also has a small heart (equivalent to a 7-year-old) and struggles some days in simple tasks. He has twice hurt himself where he needed stitches, once in his index finger (for this he had to undergo anaesthetic) and once he cut his left palm.
Amidst all that, my son is a happy and content child. We have now started investigating into why he is unable to eat properly and is severely underweight. He only weighs 30 kg. He walks around with a bit of difficulty, his left knee is aching a lot as they said the cushion is worn through.  His right ring finger is in a bent position, and he cannot straighten it which causes problems when he writes. His right shoulder blade in severely malformed and it is shorter than the left. I am at the point where I do not allow him to walk without a T-shirt as I cannot bear looking at him and counting all his protruding bones.
He is brave as he seldom asks for painkillers, only when he has a migraine. Puberty has not hit him yet which is what I am afraid of in the near future.
And that is our story on a short end. “
Thanks Helene so much for your story!

img_3636If you would like me to share your story with any chronic illness please email me on: JPeaSmith@KingsRoadChronicles.com

Where you can find and follow Jennifer: 

@JPeaSmith

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

What does EDS FEEL Like?

Sometimes things are just easier said than written. I’m so uncomfortable in front of a camera but I am getting used to it with Facebook Live because I get to say things that would take forever to write (or read). As part of EDS awareness month, on Monday I did a video on the new criteria for EDS and why they are still a good thing for me, how they empower me, even though I technically now “fail” the test.

Today I got to speak about what EDS feels like. This was particularly meaningful for me because I could bring my actual voice into the whole thing and people could hear me as I speak instead of just in their own version of my voice in their heads. But I also talk with my hands a lot and so I got to explain things like the ways in which our bodies move and why that hurts, in a way that words on a page could never do… using my fists and my arms.

I’m not sure I’m getting any better at it yet but I am learning to feel more at home now that I have stopped trying to do all the things that people say you “should” do on Facebook Live streams (like introduce yourself and brag about who you are and what you do etc). I pretty much just get into it and I am enjoying that.

So HERE are this week’s episodes and what EDS feels like. Please watch and share for EDS awareness month!

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PS: If you want to win a signed copy of my book “The Lion and the Peacock”, and a pair of my Zebra earrings, then watch the video or sign on for details in this month’s “no spam” newsletter by signing on HERE 🙂

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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

Facebook Live is my New Voice!

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In a couple of hours I will be going live for the first in the series on Telling Your Story on my Facebook Page. I’d love to speak with you there!

If you had asked me a year ago how I felt about being on camera, I would have baulked. Actually, a few months ago I would have said the same thing. I HATE myself on camera and I hate the sound of my own voice. I still do, let me tell you!

But with so many talks and interviews lately and before I knew it I’d said yes to doing a Facebook Live for The Mighty. I’ve no idea what’s come over me but I’m loving it. I still hate looking at myself on camera or hearing my own voice, but even with my brain fog and nerves and all the rest of it, I am finding that the live interaction on Facebook Live is right up my alley. I even tried to do one that wasn’t live (as in a podcast / Youtube video) and I just froze through the whole thing.

I think that talking to a live, interactive audience changes everything for me as I quickly forget the camera and simply talk to people. I share my story and my heart and simply answer questions and the next thing I know I’ve run over time. So thank you all for your support in these. Please feel free to watch past streams and sign on for new ones HERE.

I write memoir, and I speak and write on chronic illness, abuse, EDS and more, but finding my voice has been the overarching theme through everything as I have spent my life so far struggling with being squashed and bullied and silenced. Finding my voice has been one of the most liberating things in my life but it has also been the hardest. It wasn’t overnight, it wasn’t even over months. It was a long and painful journey that I am still walking. This adds such a richness to that story.

Nothing will replace the full books where I can speak about things that are too hard to say out loud, or are too long for a single sitting, but speaking live with people brings my story to life in a whole new way!

Just scroll down on the right here to Categories and click on “Facebook Live” to see other posts on this amazing platform.

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

What is Empowerment?

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Today we did the very first in the series on Empowerment. What is Empowerment, how it differs from Power, and what is Disempowerment? It was such an easy one to talk about because I already have so many discussions with people in this regard. You can watch it HERE. I would love it if you could watch, share, comment and so on 🙂

Don’t forget I’ll be back doing the next Facebook Live on Monday (May 8th) with The Mighty! See you there!