Shop Forum More Submit  Join Login

So I have decided to talk about why I haven't been around much, after all, it is Rare Disease Day and I would like people to understand. I have been diagnosed with atlantoaxial, cranio-cervical and sub-axial instability .In other words my neck is very unstable due to my Ehlers-Danlos Syndrome and I am having trouble holding up my head :D (all those brains ha!)

In order to be diagnosed I had to travel to London to have an upright MRI, then to Barcelona to speak to a neurosurgeon, and I had to pay for all of that out of my savings. The Spanish neurosurgeons do not acknowledge that what I have exists, the last one told me that all my symptoms were caused by the fact that I am too skinny ha! Well perhaps we should examine that premise?

When I look down or to the right or left I feel a disconnect in my spinal cord. I can't feel my legs, I can't control my knees. I have constant shooting pains and numbness in my arms and I can't control my hands properly. My upper and lower back feel weak and wobbly. My head hurts constantly, I have tinnitus that is so loud I can no longer hear anything on the phone. I walk with a stick (when I am not pushing Jim, my husband, in his wheelchair) because I am so unsteady on my feet and I can't afford to fall, as I have to take care of Jim. The nerve pain is the worst though, my legs burn, my arms burn and well the pain in my neck is indescribable. I could go on and on, there are many more symptoms.

And do I 'look' normal, well apart from when I am wearing my neck collar to ride on public transport (I can't drive anymore obviously as I can't turn my head with my neck collar on), yes I do (well normal for me :D). I am so sick of Doctors that treat me with disdain, contempt, indifference...................why are we so strong, because we have to be, to get the care we need. It took 43 years for me to get my Ehlers-Danlos diagnosis.

My wish today on Rare Disease Day is that Doctors remember their hippocratic oath, that they drop their complacency and pick up a book or do some research on the Internet to learn more and show a willingness to treat us, because I need a total neck fusion and I don't have the 71,000 euros it will cost.

#EDSWarrior #EDSStrong #Zebrastrong #RareDiseaseDay

Please share this journal, one of my fellow EDSers is in a serious condition and needs donations via JustGiving to have life-saving surgery, I understand that times are hard and that donations are impossible for most people, but by sharing you might reach someone that can help.

Tonia Payne-Cheney

Update on her condition today:…

JustGiving page:…
Just stopping by and found to my surprise that Monica :iconmocris: has awarded me a Daily Deviation - thank you so much :heart: a very bitter sweet moment for me, as today is Maria's birthday :iconmagicsart:, Maria passed away last year, my fellow Ehlers-Danlos warrior who lost her fight. She would have been very pleased for me I know and I would like to celebrate with a small feature for both Monica, to say thank you, and for Maria, at peace at last :love:


RIP My sweet friend :iconmagicsart:

Hold On Time by magicsart  Nevermore the raven by magicsart  goth  me by magicsart  Wings Of Steel by magicsart  Winter Solstice by magicsart  Iced by magicsart
Thank you all for the beautiful art :heart:
She by Can-Cat Portrait of The Ice Queen by Can-Cat  incident by AlexanderKorolev  Fauna by EligoDesign  Franciscus by Wimmeke63  first date by beyzayildirim77  What Is It Good For by nitchwarmer  About Ice and Fire by Aramisdream  It's Snowing by apelaths  Whacky Animal Road by Splat-Shot  Manipulacion - Zeus by joha-nna  The guerrilla squirrel by erikRamon  Over the clouds by MoAChuuuttt  M_Butterfly by EligoDesign  An Oasis From The Storm by gustiidiaz  The Ice Cave by ShawneeDawn <da:thumb id="658526897"/>  Spirit of Deep Winter by FrostAlexis  Last Stand by GemmyArtsTB <da:thumb id="655602219"/>  New Dream 10 by caddman  Naiad by annewipf  Dangerous Journey by wahidubaidillah  Elevation by jiajenn  I Am The King of this World by outbackgang  Ruin With A View.. by AledJonesDigitalArt  New Dream 12 by caddman  Introducing The Windigo, Page 9 by Can-Cat  Oz ~ Meeting The Wizard by aaTmaHira  dorthy and  land of  emeraALD CITY by rocheleheart10  A Journey to the Beginning of Time by BaronGraphics  Reward by Black-B-o-x  Princesses on parade by MelaClara  Gonna Catch Them Toes by BrankaArts  Alice by ChiaraLily9 <da:thumb id="660934567"/>  Beloved Night by amethystmoonsong  In Search of the Wizard of Oz-En Busca del Mago de by Mvicen <da:thumb id="660608374"/>  Le Corsare by AugustoDigitalArt  Bon Voyage by Fairling  Lost in Thought by TSWright  Machine Shop by HalTenny  Dragonflies by ColdwaterCustoms <da:thumb id="663385218"/>  Happy Valentines Day by AnnMLoveArt  Paysage Seigneur des Anneaux by Fairling  Polar Bears by ChiaraLily9   Perseo e Andromeda by doclicio  carry me home by littlewillow-art  Telluric Contamination by kimsol  Lost Lands.. by AledJonesDigitalArt  Scenery sketch - Mountain by yuhime  Tortoise Surreal 2017 by 35-Elissandro  Lady On The Sea by kaka-pararean83  Elephants by ChiaraLily9  Guardians by Amanda-Kulp  Tomb Raider Civilta' Perdute by DraakeT by DraakeT  Combat Dragons by Fairling  The End of the World by BrankaArts  On a Perfect Day.......... by petronellavanree  We're gonna need a bigger swatter by Birdsatalcatraz