I have written before in my best proud mum style about the beautiful girl’s art, and not so long ago a friend suggested that we look at getting her work some exposure. This new website was suggested, where we could show her drawings and paintings, but also create some lovely unique greetings cards for the public to purchase.
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Hubby and I talked about Unique Selling Points, the lovely girl just felt embarrassed and didn’t want her name on anything, so using the emblem for our genetic condition, Zebra Girl was born. We are really hoping that alongside creating art, we might be able to fundraise for The Ehlers Danlos Support UK through selling some greetings cards. I have just created a facebook page and would appreciate some likes and shares to get the word out there! Art by Zebra Girl facebook page
I know I am a hopeless salesperson and even worse at marketing, so that is why I am sharing a review from Debbie of Mum’s The Boss Blog. She reviewed the We All Send Cards site, looking at it from an artist’s, business builder and customer perspective. I hope you enjoy the review and take a look at the site by going direct to Zebra Girl or to the WASC site, – both links will help fundraise for EDSUK.
“Today I’m taking a look at WeAllSendCards a new UK website for sending personalised printed cards, which also offers a fantastic business opportunity. There is also a giveaway at the end of the page so please read on…
How many cards do you send in a year? Even excluding the Christmas card marathon, how many do you send?
If you are anything like me, you probably don’t send as many as you would like to. I’d love to send more birthday cards, thank you cards, and cards to celebrate all kinds of things. I love receiving cards and I think it is lovely to send them too. But the occasions creep up on me and I find I don’t have the right card at the right time and I can’t be bothered to go out and buy a stamp and post them…..does this sound familiar?
I sent myself a Thank you card just to test out the concept – it was lovely to receive. This would be great if you were in business – you could put company relevant images inside the card and thank your customers and suppliers. you could also put a coupon or QR code in there if you wanted to. But it’s also nice for your personal occasions.
You have two options for delivery with these cards. Firstly you can have them totally printed and just send them directly to your recipient. Alternatively (and this is great), you can part-personalise them and then have them sent to you in cellophane – you can then hand write a bit on the card and send them on. They tend to arrive at the first destination about 4-6 business days after you order them (more if you are posting abroad) but as long as you leave yourself a week or more of notice then this is a great service…….continued”
Debbie goes on to explain that as an artist or designer there are both business and creator opportunities at We All Send Cards. For Debbie’s complete article please visit Mum’s The Boss.
Today I finished reading a science fiction book that has got me thinking – not my usual cup of tea but I have been asked to review it, so that will be coming! Anyway the premise of the story was of life taking different turns and thus different timelines – the what if? or sliding doors scenario. The main character finds himself with 3 different versions of himself due to time travel – the timelines all run from 1965 to 2016 and the world is a very different place in each one. Which timeline is the correct one for the world? Is there such a thing as the “correct” one? How can one minute action change the whole future of the world? If we were all given different life timelines would it be possible to always make the right choices?
Life is full of uncertainties and every day is full of actions that will have consequences. How many times have you wondered after an event “what would have happened if I’d gone left rather than right?” It made me think about a recent conversation where a mother was saying that her poor teen child was always the one that things went wrong for, had the worst health problems, and suggested everyone around them should be sympathetic. She said “When my teen gets upset and asks why does it always happen to me, I agree that it isn’t fair.”
But is this the right way to answer? Is Mum allowing the teen to always put the blame for every situation on to someone else? It may be better to stand up straight, shoulders back and tell the world “well I don’t like what has been handed to me, but I’m going to damned well get on with it”. Over the years a powerful message that I learnt from so many patients was the “Well why NOT me mentality?”. As you all know I can apply this to my health – I don’t have a fatal condition (neither does the teen!), but it is tricky to live with and I find it hard to think I may be like this for another 40 years. I wonder if I hadn’t taken up rowing aged 12, or if I hadn’t become a nurse, or if I hadn’t fallen down the stairs in my second pregnancy and hurt my back again (hmmm….might answer some of the questions about son number 2!!), or hadn’t had a third pregnancy, or had genetic testing, or, or, or…..there could be so many different timelines if only something had been done differently.
But what a waste of energy. The past can’t be changed and sadly I don’t yet have a time machine…..and even if Dr Who did offer me a spin in the Tardis, how much would it change? Not my genetic condition…..I could think “Why me?”, but actually the bigger question is “Why not me?”. When a close friend died aged 37 from breast cancer, I did ask “Why her?”…….but then look out the window and it could be anyone’s mother, father, brother, sister, friend couldn’t it? If I could change our family timeline I would want to ensure that my kids hadn’t inherited EDS and that nothing bad would ever happen – but I can’t do that, so my job is to ensure that they accept it, live life to the full and for the moment. If problems arise – the politics student’s migraines, the lovely girl’s dislocations and pain – then we will deal with them…..but by shouting “why me? it’s not fair….” is not going to help.
So, back to my novel – the main character found that every time the scientist invented a new machine, he also invented the “accident” of that machine; every time he was sent back to try to alter the timeline/revert to the original timeline, his actions would have a knock on effect….with unforeseen consequences. I think I am actually starting to sound like my old physics teacher – for every action there is an equal and opposite action – or something like that! So I guess for me and the teen, it means we have to get up, not dwell on the bad bits (sometimes easier said than done) and get on with the good bits. But this is only one old crone’s ramblings!
Although if I’d had that time machine and could have made it so that I could join in at the SHS Burn’s night dancing last night…..equally I think hubby, Duncan, would be turning his back so that he wasn’t swept up to do the Gay Gordons!!
Fainting in the car showroom wasn’t something that I had thought would be a part of my week! We had a phone call to say that my Motability car would be arriving and it has felt like the whole process has happened so fast. Not so long ago I was still convinced that I would be deemed too “fit” to qualify.
It is a shame really that the “passing out” wasn’t due to excitement, but rather a POTSIE dysautonomic response! My symptoms are always worse in the morning from the time I get up to mid morning – my cardiologist said having laid down all night (sometimes) the body is then put under immense stress from gravity and “baggy” blood vessels to keep circulating oxygenated blood to the whole body on standing. So the system concentrates on the major organs in the abdomen, blood rushes down away from the head, pools in the hands & feet – and I feel extremely dizzy or faint. Yes, out cold! So a 9.30 appointment was never going to be great – but add in stormy weather, bright fluorescent lighting and a hot showroom and Bingo! you have the makings of a “dysautonomic nervous system” episode. Sounds grander than it feels!!
Anyway, the salesman came back to his desk to find me with my head back, shoes off, feet up, grey and clammy. Not my best look…..but precisely the reason that I have been awarded the enhanced rate benefit. Of course add in the dislocations, pain etc…..all adds up to me getting a brand new car and not being able to drive it! So disappointing. My mum and hubby are the named drivers on the inclusive insurance – no, the student engineer isn’t old enough, much to his disgust – and I I grudgingly accept that passing out behind the wheel or pulling an arm out of socket whilst turning the steering wheel, probably isn’t the safest way to get from A to B.
Busman’s holiday for hubby taking a car handover and the student engineer had the bluetooth wireless phone/stereo system programmed before we had even started the engine….great except he has no understanding of why I can’t pick it up in the same “on the spectrum” way that he does. The ride feels smoother and hopefully this will be a huge benefit for my back pain, but I haven’t been well enough to go back in it this week. Female hormones always exacerbate my symptoms and I have had several days when I have been unable to sit upright – another post for another time! But I’m upright today and so writing a very speedy post having missed out all week.
Thank you Motability for a fantastic scheme that has allowed me to have a car to house me – comfortably I hope – my wheelchair, shopping and a dog!
In under ten short years I have found myself well and truly stepping out of one uniform and into another. I didn’t see it coming, I really didn’t. But it crept up on me slowly and insidiously from my first surgery aged 21 until at the tender (don’t laugh) age of 39 I was officially declared medically retired. On the scrap heap, put out to pasture, caput!
Somewhere in the depths of my wardrobe hangs a blue nurse’s uniform along with a tiny belt and silver buckle, given to me when I qualified. I’m not sure that the belt would go around a thigh now, let alone my middle!! These days my uniform is more likely to consist of trackie bottoms, PJs or if I am really lucky, a beautiful, backless hospital gown. Now you are understanding what my new uniform looks like, right?!
A couple of weeks back I started to write about a visit to the geneticist with my teenage daughter, known here as the lovely girl, and I have been gathering my thoughts around all the different appointments on my calendar recently. As a medical professional I never appreciated just how many chronic illnesses there are out there, and even less how so many are multi systemic. In palliative care we prided ourselves on being multi disciplinary but this really only scratched the surface. Of course all that time I was nurturing my own genetic illness slowly but surely. It was undiagnosed formerly; always just known as double jointed, bendy, funny circulation, chilblains, headachey, migraines, hormonal, dizzy, faint…..growing pains, sciatica, nerve damage, chronic pain – you get the picture. But in recent years the pieces of the jigsaw have fallen into place, not always quite in the right places, but we are getting there and the appointment with my lovely girl reinforced this.
My hospital visits over the last month have included the geneticist, rheumatologist, cardiologist, endocrinologist and orthopaedics, not forgetting my GP! With other symptoms of chronic illness such as fatigue and brain fog, the endless waiting rooms and then repetitious consultations can be exhausting and demoralising. No one is at fault – it is the system. I have been pleasantly surprised to find that the younger generation of doctors have heard of my condition – Ehlers Danlos Syndrome – and seem to be aware that it can affect all body systems, not just that one that they are currently specialising in! My eldest, the student engineer was out with friends at the end of term and one of his medical student mates commented upon my son’s shaky hands…..nothing to do with the fact they were in a bar, he assures me! Anyway he proceeded to show them his bendy fingers – his really feel like there are no bones inside – and then his elbows and knees, and afterwards called me to say that the medics had been taught about connective tissue disorders and had heard of EDS..hurray!
Having a diagnosis at just short of turning 15 is a huge leap forward for my girl from the position I was in at her age. I think that I mentioned before that the genetics consultant wants us to keep an eye on her back as she will be susceptible to problems due to shoulder subluxations and wonky hips. We know that there is no cure – the endocrinologist was so apologetic that he can’t do any more to help me, whilst the rheumatologist said I have an excellent knowledge of my condition and seem to be managing it well. Orthopaedics know that I require joint replacement surgery – but I am currently too young and the unknown quantity is the constant dislocations. The cardiologist is keeping a closer eye on matters and has increased one drug dosage to help with the dysautonomia fainting.
There you have it – in the space of a few years going from medical professional to professional patient! As I said there is no cure for my kids, just a greater understanding of what might cause problems and what will help to prevent deconditioning. The geneticist told the lovely girl that there is no reason to think she will become a seasoned pro like her mum, to be mindful but to go away and live life. Funny, but the endocrinologist said something similar to me about living life the best I can.
Hindsight is a wonderful thing….maybe if I had known, I would never have donned that blue dress only to swap it for a beautiful backless (hospital) gown!! But it may well have made no difference.
I just want to share a couple of stories with you that both centre on young ladies living with types of EDS. Of course these pieces always jump out at me, but I believe that whether you have EDS, another chronic illness or are reading this as, hopefully, a fit and well body that these stories will raise a smile!
The first features a beautiful 11 year old and her canine best friend,
Assistance Dog Helps 11-Year-Old Who Can’t Stand on Her Own Accomplish Her Dreams
At just seven years old, LanDan Olivia was diagnosed with Postural Orthostatic Tachycardia Syndrome and Ehlers-Danlos Syndrome. The effects of these syndromes make it hard for LanDan Olivia to stand on her own and often restrict her to a wheelchair.
But LanDan Olivia doesn’t feel restricted, and that is in big part due to her assistance dog and best friend Perkins, who keeps the 11-year-old smiling and active every day.
The road to Perkins started shortly after LanDan’s diagnosis. She and her mom reached out to Canine Companions for Independence for an assistance dog to help LanDan Olivia conquer the everyday tasks that had now become a struggle for her.
“I was in my wheelchair, and it was really hard to get around, and open doors and drawers, and close them, and I would drop things and couldn’t pick them up. Sometimes even emotionally, I also felt like I needed help with things that a person could not understand,” she told PEOPLE. “Perkins just feels me. I needed someone like Perkins in my life.”
After two years of waiting, LanDan Olivia received the call she’d been dreaming of from Canine Companions for Independence, an invitation to Team Training. There, Perkins was waiting to meet his future owner and best buddy, having already gone through a year and a half of basic training, so they could begin working on a relationship that catered to LanDan Olivia’s specific needs.
My second story features Vascular Ehlers Danlos Syndrome, which is probably carries the highest risk of fatality. Planning to start a family when you carry a genetic condition is a minefield ordinarily, but if the pregnancy itself could put the mother’s life at risk due to said condition another can of worms waits to be opened. This is how one couple coped.
Leyla was desperate to be a mother, but being pregnant could kill her… Which is why she used a surrogate even though she’s able to conceive
For Leyla Hutchings it was not infertility that drove her to surrogacy, but the fact doctors had told her she would risk her life by carrying a baby
Baby Zeki was born to his surrogate mother Rachael Coleman in
400 surrogate babies were registered in UK in 2016 – four times 2011 statistics
PUBLISHED: 01:18, 15 August 2017 | UPDATED: 04:30, 15 August 2017
When Leyla Hutchings takes her three-year-old son Zeki to see his ‘Auntie’ Rachael, he’s always excited to play with her three children, whom he treats as his cousins.
Yet their relationship is much more complex than that.
They’re not genetically related, but Zeki has a lot in common with Daisy, nine, Jack, seven, and Max, five. For ‘Auntie’ Rachael is not a biological relation — she simply gave birth to him.
Zeki is a surrogate child, the result of a sympathetic mother’s urge to help another woman have a child.
For Londoner Leyla Hutchings (pictured with surrogate mother Rachael Coleman and baby Zeki) doctors had told her she would risk her life by carrying a baby
Last year, 400 surrogate babies were registered in the UK — nearly four times as many as in 2011 — due mainly to increased awareness that surrogacy is a possibility for childless couples.
According to the charity Surrogacy UK, common reasons for using a surrogate include repeated miscarriages, failed IVF treatments or early menopause, often as a result of cancer treatment. And one in 5,000 women has no womb or cervix.
But Leyla’s case was different — it was not infertility that drove her to surrogacy, but the fact doctors had told her she would risk her life by carrying a baby.
At the age of 26, she was diagnosed with an aneurysm — a bulge in a major blood vessel, in her case in the leg, which, if it burst, could cause fatal internal bleeding.
Leyla was on the Tube on her way to work at a London law firm when she collapsed with sudden pain. Rushed to hospital, she was diagnosed with vascular Ehlers-Danlos syndrome (EDS) — a rare genetic condition.
I had a Personal Independence Payment medical review this week (more of that another time!). My GP had requested a home visit, mainly as my dysautonomia/fainting is so much worse, but I was merely given another appointment a little nearer to home. As it seemed near impossible to tie up the DWP who would have received the letter, with the review service (formerly known as ATOS) we decided between us that Duncan would try to get me there, but the GP was adamant not without all the letters that she had been sent recently. Half a tree later we left her surgery – and this was just the correspondence since the beginning of the year.
The day after the assessment, I received a copy of the letter dictated by my new rheumatologist to my GP. Lovely man, but the person who he describes in this letter doesn’t appear to be me. In fact she is completely at odds to the lady described a month earlier by the orthopaedic consultant, after a dislocation that required a trip to A&E! The history of my shoulder pain was wrong, and apparently I have “a reasonable range of movement” …”with some discomfort” – ahem, I am hypermobile with very stretched ligaments & tendons so everything moves in every direction and I was actually referred for PAIN management. Apparently my “other joints are normal” and I “really know how to manage my hypermobility syndrome”.
The ortho consultant said “she has been having pain in that shoulder for some time and was seen by my colleague 2 years ago…” and “on examining her shoulder it moves through a reduced range and her x rays show progressive glenohumeral joint arthritis, with a marked difference from 2 years ago”. He goes on to say “Unfortunately Claire has a very difficult problem to solve. She has EDS….& has developed arthropathy within the glenohumeral joint”. I was told 2 years ago that if I were 30 years older I would be whisked in for a shoulder replacement……this time the consultant could see a huge deterioration on x ray, but again explained that a shoulder replacement with my EDS is just not really an option as my ligaments & cartilages are so stretched. A shoulder replacement would not stand up to recurrent dislocations!
Pictures from Google search
So, the thing that the two specialists agree is that I have a really good knowledge of EDS and both do recommend conservative treatment with physiotherapy – again! The physio with expertise in hypermobility syndromes who the rheumatologist recommends is out of area; my old physio who works with the ortho consultant is no longer able to see me on the NHS as he is a Consultant physio……..
This is the reality of a condition that affects multiple body systems with no one person leading the care! So now the search for a physio, who understands that I can’t be “fixed” but need ongoing rehab, is ON!!!
I hope that you are all ready for another week – tennis at Wimbledon, more sun, heat and BBQs, and for many the end of the school term and for some the beginning of the long summer holidays. So I really shouldn’t moan about this heat wave that we have in the south of the UK, but it is really sending my POTS/dysautonomia off the scale. Please send me all your top tips and I will put a post together – funny tips too please!
Anyway I bought a big straw hat – not easy when you have inherited the family huge head! – and have been away for a couple of days with my parents to visit my brother at his new house. We are talking brand new – living on a building site would aptly describe the estate at the moment – and my sister-in-law still has a lot of boxes to unpack. Think I would be correct in saying mainly make up and bling…..she won’t be offended! We were taken to the school play and end of year prize giving on Thursday, which was an incredibly hot day. The children, aged 5 – 11, did a fantastic job of an interesting amalgamation of Romeo & Juliet, Peter Pan and the Cow who wanted to grow Sunflowers – beautiful costumes! The whole event took place in a marquee – small Oxfordshire private school – and the heat during the afternoon was horrendous. I think maybe the head should have adjusted her speech….shortened it!!
Anyway, despite being armed with said hat, water and the salt grinder from my brother’s kitchen, Auntie Claire had already fainted on leaving the portaloo. But I completely stole the show at the end of the day with a fantastic backwards faint when standing up from my wheelchair to get into the car. I came round on the gravel carpark floor surrounded by faces….not just those of my family! There was a parent who is a doctor, the school nurse, a teacher……and my mum trying to explain POTS, my spinal cord stimulator etc etc…..and please don’t call an ambulance!! The school nurse was quite excited, having come to these events for years and having nothing to do. As a fellow nurse I loved this
Like many of you, I have spent the weekend feeling constantly giddy and last night managed to pop a hip and dislocate the knee and ankle on the same leg – the joys of EDS. So whilst I should be at a governors’ visit day at our local primary school – Duncan would not let me go unless I could weight bear – I am instead sitting with leg up and finding some great posts for you. The final You tube video comes from a young vlogger who appeared on the BBC yesterday morning to discuss organ donation in the UK – he has cystic fibrosis and is awaiting a lung transplant. This post is about living with a chronic illness as a teen.
Time for your cuppa and relaxation time with some inspiring posts! Enjoy!