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
Advertisements

Food!

Food has always been a bit of an issue for me. So have allergies and of course, those go hand in hand. Long before I got Mah Eeds diagnosis I struggled a lot with feeling as though going into a supermarket was an exercise in denial and a massive reminder of everything that I can’t have.

Years of specialists, allergists, varying opinions and not too many answers and the bottom line always appears to me to be some kind of avoidance. Avoid this food or that food, avoid some of the symptoms or my questions, avoid a diagnosis that means anything and so on. So when I walk into any kinds me of food shop, where as a mother of a large growing family I have always needed to do multiple times every week, all around me the things that I am denied scream out and mock me! It is deeply depressing (in the real sense of the word).

Now I have bitten then bullet and risked Vulnerability Exhaustion in the name of finding some more up to date answers…. ugh, and the answer is a year off from all kinds of milk (including oat, almond, rice, cow, sheep, goat) other than coconut milk (yuck!). I am not allowed ANY grains (wheat, oat, barley, you name it) or potatoes and I am already allergic to all uncooked fruit & veg.

“Oh, that sounds like Paleo!” people excitedly tell me… nope, paleo people can have milk and cheese and eggs (did I mention I can’t have egg white?).

The last two days I spent a whole week of spoons and WAY too much money buying the chaff that I am allowed to eat and it is all disgusting. Yes, my fridge is also full of chicken lamb beef & fish …. but honestly, there is only so much meat one can eat in a day!!

New Year, New Book!

Screen Shot 2017-01-04 at 12.40.54 PM.png

It’s a new year and I am hearing in equal amounts how many people are making New Year Resolutions and how many aren’t. I get both sides and in different ways I agree with both of them. I am doing neither and I am thankful for the luxury of that right now. So many people had an horrendous 2016 but mine was pretty good. Not perfect, but this time last year I wasn’t really winning any of my health battle. Not that I am now but I have learnt so much about how to manage with the restrictions on my life and putting myself to bed for much of my time has proven to be a real game changer for me.

I am still learning to create balance and keep myself moving. But most of all I have found a portion of my voice which had been hidden all these years and I have started to write like there is no tomorrow. I wrote three books last year, multiple articles for The Mighty, and I am on the count down to actually launch my first book next week.

It’s Mah Eeds” is the story of the 30 plus years spent without a diagnosed and the incredibly painful and difficult journey to find one. “The Lion and the Peacock” grew out of one of the chapters that I was writing on “It’s Mah Eeds“. I realized as I was writing it that I needed to tell that chapter in much more detail and to package it neatly for anyone who is suffering anxiety and/or panic attacks, so that they could maybe benefit from it without having to buy the whole book.

It has been a fascinating journey but I have loved every minute of it and I have absolutely no idea where 2017 is going to take me, but if it is anything like 2016 then the highs are going to be amazing… even if they are just from my bed!

If you want to be the first to know about events, promotions and news on when the next books will be out and missed the sign up box to join the mailing list (no spam I promise) just click HERE and you will be added to the list.

Pharmacy Nazis

img_9094

Pharmacist: “You should not be taking this level of Vitamin D! Only people with some really terrible conditions should have this level, your doctor should NOT be prescribing this for you!”

Me: “How do you know I don’t have a serious condition that means that I have to have this?”

…Pharmacist hangs his head in shame.

I wish that the second two things were true 😦 … Instead only the first sentence is. I need to get better at saying things out loud instead of only standing up for myself inside my head 😦 … why do I still let health professionals bully me?

*sigh*

Shopping around for decent care…

screen-shot-2016-12-05-at-1-52-41-pm

I have already blogged and written for The Mighty about unhelpful doctors and Dr Google …and my frustration with finding help from anyone with chronic illness who is really struggling. The more I write the more I hear from people in the same situation and often way worse. There is a reason that this is striking such a strong cord with people and that is because it is happening all the time, all over the globe!

Sadly, we are able to “shop around” for most things that we spend our money on these days but there doesn’t seem to be away to shop around for health care. I am sorry that I don’t know what the answer is but I do know that joining a local support group whether on line or in “real life” can be an amazing help and I have had some real success with joining a few of the EDS groups who list the doctors and specialists who they have had success with. But it only goes so far as there seem to be precious few who really give a decent level of understanding and help and many people live too far away or can’t get in. The waiting lists of the decent doctors are so long that people are waiting a year just to be seen the first time.

I have realized, both through my own experience and those of others that there are a few things that we can do to make things as easy as possible for everyone. Not only to help the next doctor we see to help us better but also for ourselves. To avoid the anguish and confusion and to put ourselves across as knowledgable and “sane”. That sounds like an awful thing to say but I know that when my Vulnerability Exhaustion is high, my spoons are low, my brain isn’t working as it should, and I start rambling or trying to think of everything on the spot, I can be brushed aside in the first instance and never given a second chance.

We need to come across as concise, knowledgeable, helpful, educated in our condition, and strong. Without even opening our mouths we can start by handing over a printed out pack of everything that they need to know. This pack can include:

  • A list of all medications that we are on currently and maybe even some that we have been on recently or have tried and failed.
  • A list of our carers and specialists and permission for them to contact them if needed.
  • Print outs of any relevant results either recent or long term.
  • I include a list of organizations that they can look up or contact. The EDS Society is very well regarded and as far as I am concerned if they are the only people they look up then that is fine, but I want them to be the first that they check with and not the last.
  • My family medical history. As boring and irrelevant as that might be, they are going to ask those questions anyway.

The second thing is that I studied both Psychology and Biochemistry at University and so at some level I can speak the lingo and throw in that I know what I am talking about. But most people don’t have this advantage. Even if they are are geniuses and bright as a button, they may have second language issues, be extremely fearful around doctors or all kinds of other blockages. So having someone along who does know what they are doing is often a good idea.

The third thing is to be super confident of our own body knowledge. We are each and every one of us experts in how our own bodies feel and we should not allow anyone to bully us out of that.

I just wish there was a way that we didn’t have to pay for stupidity … if I go into a shop and ask for mustard and they don’t have any I get to leave without spending anything. But if I go to a doctor and ask for help and he gives me nothing but his ego, then why should I have to pay?

Does anyone else have any great ideas about how to actually shop around for decent care?

Open Letter to the new Hand Specialist.

Dear Hand Specialist,

img_6906I am still processing our first important appointment that we had a couple of months ago and I thought that it might be helpful for both of us if I am able to break down and articulate my feelings during and after leaving your office and to let you know honestly why I won’t be coming back.
I arrived in your office in late winter, on a sunny but cold day. I was dressed as I usually am for most of the year, in long john thermals, thick socks, sturdy shoes, layers of thermals including vest, spencer, long sleeved T-shirt, a warm woollen cardigan and two scarves. I loved your corner office with the winter sun pouring in and I enjoyed that unlike many medical offices where I am often too cold, I appreciated that I could remove both my scarves and my cardigan.
I placed both across my lap as I entered your office and I was a little self conscious that I looked like the Michelin man compared to you in your light layer of clothing. But I am used to that now.
Thank you for your warm welcome and for the gentle way that you asked how you can help me. I truly appreciated that when I explained my condition to you that you responded with what came across as sincerity and honesty that you have never heard of EDS. Thank you also for listening to me as I explained that in winter my aching hands are especially bad and that I have come here today to ask about splints for my hyperextended fingers and compression gloves that can be fitted to my hands. I explained that compression gloves keep my hands warm, the chilblains away and give my tissues the extra support that they need in winter to stop my blood vessels from bursting. I usually use over the counter gloves and they work wonders but don’t fit perfectly.
I explained that I am doing better than expected since diagnosis a year ago, with my small team of wonderful supportive specialists who are managing my energy, my blood levels, my injuries and my hormones. That years of painstaking trial and error, with a large dash of heart ache and agony but a few wins along the way, have resulted in a very precise regime of therapy, rest, and what appears at last to be a winning combination. I explained that I can still drive, go out a little, but that every third day I need to stay in bed, which is fine because then I get to do all my writing.
Thank you for listening to me so well, I felt heard.
But then you answered me and I was not expecting what came next. I felt as though you had listened to my story but then like a judge, jury and executioner, you were now making your ruling on everything about me, all of my body, everything that I do, and everything that I am doing wrong. This is the impact that your ruling had on me:
  • When you told me categorically that the first thing that needs to happen is to get me out of bed I felt dismissed and defensive of the specialists who have put me there, with such hard work and such great results. I felt as though you did not hear me that this is a crucial part of my stability.
  • When you told me that the only reason that I get chilblains is that I am not dressing properly or warmly enough I felt scolded and invisible before your eyes; the Michelin man not only already doing all the things that you are instructing and assuring will fix me, but wearing the exact brand you mention. How do you not see this, ..or me? I want to point out my layers and open my phone and show you the article on Wikipedia with the last couple of lines which mention that regular chilblains may be a sign of a connective tissue disorder, and that EDS is exactly that.
  • When you instruct me not to ever use the internet to look up my condition and you tell me that Bloggers are liars because if they use a wheelchair 10% of the time, that they only blog about wheelchairs, I feel kicked in the gut. When you go on to tell me that all bloggers exaggerate and that as a result I will then get a skewed idea of what my future health will be, I feel an impact again. You don’t stop for breath for me to tell you that the only reason that I got my diagnosis after 30 years is because I have been doing my own Google research, worked out which kind of Specialist to see who would know about EDS and that I myself actually use a wheelchair 10% of the time, ….and that I blog full time and not only about wheelchairs.
  • When you hand me a brochure of products that I might like to buy and tell me that when I come back next time we can look at my fingers and splints (the main thing that I came here urgently for), I felt robbed because you have not addressed what I brought to you and yet I must still pay you for the privilege.
I came here to ask for help with my hands, I was not asking you to start from scratch and “fix me”. I was not asking you to compete with all the other specialist that I have. I am a well functioning proactive human being and even if I didn’t study Biochemistry at University, I would still know way more about my body and the thirty years that I have suffered than you do.
I need to tell you these things even though I will never come back and see you because I want you to know that if you treat every patient as a bunch of text book symptoms, each with only a single solution, then not only will some people leave unhappy as I did, but some, like me, may not be fixed, or worse. I need you to know that as patients we trust you. We need you to help us in our individual and unique issues, and if I didn’t have the background, the gumption, the trust in myself and my specialists, then I could well have taken your advice to my detriment.
I believe and agree that there is a ton of information out there that is not accurate, but also that it comes not only from the internet but also from specialists who misinform either through inexperience, lack of sufficient training, or who see things only through limited filters. I am not saying that you are any of these, but I would love it if you could see that there is a whole world of information out there and that in terms of hands alone, it isn’t only confined to what you alone have learnt in school. Your patients are people, with individual needs, diseases, inherited conditions, and as a hand specialist, a foot specialist, a heart specialist or a surgeon, you each have the opportunity to be part of a whole bunch of teams who can change people’s lives.
This letter is not about what you did wrong, it is about the impact on me, and more importantly, the opportunities that you could and can have for so many people.

Who Am I?

Screen Shot 2016-09-01 at 10.08.03 PMI am a writer for The Mighty, Author of my first books coming out the second week of January, blogger here on WordPress, an artist all over the show, fabulous wife, imperfect but grateful mother and I have a chronic genetic condition (EDS). I am also a chronic abuse survivor and creator of #MahEeds, #RockinMahEeds and all things “Eeds” related. I am committed to surviving and thriving, redemption, encouragement of all kinds and bringing joy and meaning to my life and others.

Mostly I am just a person, but I studied both Biochemistry (specifically genetics) and Psychology when I went to University …although I have never officially worked in either field mainly because I didn’t have time!

I have a chronic condition: Along my journey, and in fact since birth, I have been suffering from numerous health issues associated with (until recently) undiagnosed Ehlers-Danlos-Syndrome (EDS), an inherited genetic condition that explained much of my physical exhaustion and suffering. Diagnosis for me came too late to undo the damage, but hopefully it is in time to prevent further damage anIMG_7522d to help my children who have all inherited it, to have a better journey of it than I have. My son calls EDS “Mah Eeds” (pronounced the same as my needs without the “n”) and this has dramatically helped us all with the language of our day to day struggles, thereby lightening it without dismissing the seriousness of it. So if you follow my journey you will see all manner of references to Mah Eeds and so all kinds of Eeds derivatives.

I have no choice but to spend more of my time in bed that out, but in the same spirit of uplifting and encouraging our lives rather than giving into them, my bedroom, and specifically my bed is referred to as my Office … and here I get to write, write, and write… I use my time in bed and my skills and education to write about my life and my story, sharing my journey of failure and successes, creating awareness and doing a ton of research as I experiment and work on making my life as whole and productive as I can. I share my books on my journey through unpacking and surviving a chronic condition as well as my emotional journey through my blogs and my books. I am NOT a medical professional and nor do I claim to be. I am simply sharing my journey with anyone who would like to listen.

We travel a lot because of my husband’s job, and so I get the pleasure/pain of being confined to all kinds of hotel beds literally all over the world. Where I can write, create and reach out to the world though my blogs and my books.

Screen Shot 2016-09-01 at 8.58.12 PM.pngI am a TCK: I have lived in many different countries around the world and later dragged my children with me, which makes them second generation TCKs. In n earthly sense I am a dual citizen, as I am South African and I am Australian, each in completely different ways. But more than that I am a world citizen. I struggle not only with the abandonment of my family but of people and friends and countries who have let me down. The issues of belonging and acceptance and tribes and roles in Family-of-Origin are fascinating to me. I study them and think about them and now I am writing about them here. Having never truly belonged to the Tribe that I was born into, then cast out by them because I didn’t play my vital role of scape-goat and care-taker, I created my own tribes as best I could in all kinds of ways. My God is my father in the deepest sense of the word, but I don’t fit into any neat boxes that “normal” people have and in general they don’t like it. So often I feel as though I am on the outside looking in and always feeling one step behind, ….that I never got any of the “memos” about life that everyone else appeared to have gotten. I have always been a purple onion in a bag of brown onions….

img_3383Therefore I am also a Survivor; of long term emotional abuseSurvivor. I am married to a wonderful man who is also a childhood abuse survivor. Our individual childhood stories are very different to each other’s but they are also intricately entwined over generations, so it is extremely hard to separate our stories. While each story has had a massive impacted on the other, only mine is mine to tell. We are quite far into the journey with a team of amazing doctors, psychologists and specialists who are walking us through this, past the point that they said we could ever reach, and into healing and wholeness again… We have been peeling back the Onion Layers for a very long time now and I am extremely proud of both of us for coming this far.

screen-shot-2017-01-04-at-12-40-54-pm

I am a Writer and Blogger: People have spoken for me and overruled me my entire life. They have controlled and tried to define me in all kinds of ways. I was born into anxiety and have never felt safety but I am working hard on getting there. This has affected my body in untold ways, but it also meant that I never found my voice. I have felt completely invisible much my life, and I had no idea who I was, what I wanted, where I was going. But the voice in me was there and kind of always I knew it, I just didn’t know how to find it or how to use it.

I have hated being voiceless, hiding and wearing a mask my whole life and as I break out I want to stand on a roof top and shout my stories!!!! …. So 2016 has been a year of writing writing writing … Although my voice is still new, fragile, scared even after a lifetime of being smacked on the head every time I pop up, like “whack-a-mole”, but I am starting to find my way.

Screen Shot 2016-09-01 at 8.58.26 PMI am also an Artist: Following my parents and then my husband around the globe has been the main reason that I have not worked in my chosen fields of Genetics and Psychology but the other major reason is that while it is hard to change most jobs internationally at the drop of a hat, teaching classes in clay, ceramics, art and so on, have given me not only an outlet which is nourishing and uplifting, but I have learnt along the way that my art is also the one part of me that is mine, that has not been defined by others. I learnt that the neglect and loss that I experienced as a child, as well as some of the countries that I have lived in as an adult which have lacked so many basic resources and having very little financial resources of our own, has taught me to improvise, to learn without lessons, to experiment and be brave, and come up with my own way of doing things. My Art is more than just a sideline, it has been my saving grace, and an expression of the redemption in my life.

You can find me on Facebook Twitter and Instagram, and I’d love you to pop by and comment, follow or share 🙂