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).
Screen Shot 2017-05-30 at 5.10.29 PM
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.
Screen Shot 2017-05-30 at 5.23.41 PM
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
Advertisements

SmartCRUTCH notes!

IMG_6177.JPG

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:

 

Screen Shot 2017-05-25 at 1.16.46 PM

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

Screen Shot 2017-05-25 at 1.17.50 PM

How much better are the SmartCRUTCHES!!!

Screen Shot 2017-05-25 at 1.19.18 PM

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):

Screen Shot 2017-05-25 at 1.25.10 PM

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:

Screen Shot 2017-05-25 at 1.33.08 PM

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

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.

Screen Shot 2016-09-01 at 10.08.03 PM

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!

IMG_4277

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!

EDS Facebook Live Front RoE

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 🙂

img_5717-1

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

Running on Empty!

Facebook Live Front A1-3

Facebook Live. I’m lovin’ it. I started a couple of days ago with the testing which was awkward and weird but I am finding my space there slowly, and really enjoying it. I asked for questions for the next few weeks of “shows” and as I been asked a lot of questions before, through my blog and Facebook stories, as well as my Mighty Stories, I suddenly have quite a long list to keep me going for a while.

I want to do this well, so I spent a few days mulling over the list of questions and today we realised that most of the questions fall under one of four categories which are not surprisingly, quite relevant to anyone, even those without a chronic illness at all. People who could benefit from these Q&A sessions will be those who are struggling (or who know someone struggling) with a difficult season in their lives. This will include those dealing with bad health, grief, loss, or any other life change such as divorce or moving far away.

Once every two weeks, I will be doing a Facebook Live under the heading of “RUNNING ON EMPTY”. Topics for discussion will cover general topics like managing medications, getting help from those around you, negotiating specialists, and understanding your life changes. But May just happens to be EDS Awareness Month so the sessions in May will include (but be limited to) things like “What is EDS?”, “A Day in My Life”, “An EDS First Aid Kit” and so on.

Here is the schedule for the next few months ( I will update it regularly with new links and updated information as we go!) :

  • Monday, May 1st – I will be focusing on EDS because May is EDS Awareness Month and what a better way to start than that!  | New York: 2pm | London: 7pm | Johannesburg: 8pm |Sydney 4am |

 

  • Thursday, May 18th – “A Day in My Life”| New York: 5am | London: 10am | Johannesburg: 11am |Sydney 7pm |

 

  • Monday, May 29th – | New York: 3pm | London: 8pm | Johannesburg: 9pm |Sydney 4am |

 

  • Thursday, June 15th – | New York: 5am | London: 10am | Johannesburg: 11am |Sydney 7pm |

 

  • Monday, June 26th – | New York: 3pm | London: 8pm | Johannesburg: 9pm |Sydney 4am |

 

  • Thursday, July 13th – | New York: 5am | London: 10am | Johannesburg: 11am |Sydney 7pm |

 

  • Monday, July 24th – | New York: 3pm | London: 8pm | Johannesburg: 9pm |Sydney 4am |

 

  • Thursday, August 10th – | New York: 5am | London: 10am | Johannesburg: 11am |Sydney 7pm |

 

  • Monday, August 21st – | New York: 3pm | London: 8pm | Johannesburg: 9pm |Sydney 4am |

 

So pop those in your diaries or go HERE to watch this short introductory Facebook Live. At the very end, it will give you the opportunity to turn on notifications for my future Facebook Lives. You can also simply “Like” and Follow my Facebook Page and the following places to get updates and changes. Please remember to share any of my Posts across my social media platforms.

@JPeaSmith
 
“Here she comes, running, out of prison and off the pedestal: chains off, crown off, halo off, just a live woman.”  ― Charlotte Perkins Gilman

May is EDS Awareness Month!!

IMG_4937

This is it people, this is our month! We love being a part of rare disease day and the other groups we get to be a part of, but May is our month, our time in the sun and we get to shout it out and let everyone know about us, and Zebras and all there is to know about Ehlers-Danlos Syndrome. We can’t make anyone listen, but in May we have permission to shout about it 🙂

So I am going to kick off EDS Awareness month by going live! Just like and follow my Facebook Page HERE then tune there this coming Monday, May 1st at the following time for my first ever Facebook Live (if nothing else than to laugh at me and all the mistakes I make LOL).

PST 10:30am EST 1:30pm London 6:30pm – Johannesburg 7:30pm

You can ask me anything EDS, chronic illness, anxiety, or book related and I will try and answer as best I can. If you have EDS yourself then get your friends and family to join in as well, as they can ask questions too! Looking forward to seeing you then!

For a direct link to the Event go HERE, and share the link around, tell me you are coming, and best of all, ask as many questions as you’d like ahead of time but putting them in the comments. On the night, these will be the first ones I answer but you will be able to ask more in the comments of the live event. I’d so appreciate your support! Don’t forget, it’s this coming Monday!

Julie post LifeLine

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