Do you have a creative streak?
Maybe you like phorograohy, or have coloured in some amazing mindfulness patterns. How about fun and arty make up or hairstyling? Or designing and creating clothes? Nail art? Have you every painted someone and felt so proud of yourself - whether it took one day or 6 months to complete! What about sketches, or patterns?
Well, they are all the Art we want to celebrate in The TIREDGIRL Art Festival - An online virtual art gallery exclusively showcasing work by women with chronic illness.
A place to celebrate the amazing work by amazing women. To celebrate the strength and imagination of women who are at home, fighting hard and creating light for this world.
The Festival will be ongoing, and all members of The TIREDGIRL Society can submit their work to showcase to the world.
We are proud to be a creative community and bring this part of our platform to life. | Launching Soon
Welp. Got my report back for the neurosurgeon’s opinion on my flexion upright MRI. I excerpted a bit here. Diagnosed with #CCI
and need further imaging to confirm suspected #subaxialinstability
, which is going to be nigh impossible before the move, so I’m stressed about it. But I’m sending this to NIH also because it discusses the compression of my brainstem by my odontoid, as well as the need for posterior fossa decompression surgery (for #Chiari
) and possibly fusion. That’s in contrast to their opinion. .
Neurology is like this! You often get different answers from different doctors. It is more subjective than you think. It can be confusing. But in this case, most neurosurgeons are not well versed in CCI & don’t look for it or address it ... I found a neurosurgeon who is an expert in exactly this, so I feel confident he is correct. He also asked about my symptoms and pain in a way no doctor has, and I sent him various other records and imaging so he could get the full picture. .
Hopefully I can get this imaging soon! But yikes another bomb dropped on me ... though in truth, I already knew. Now to find money somehow for the Miami collar for car rides. Or will insurance cover that? Does anyone know?
#craniocervicalinstability #EDS #ehlersdanlossyndrome #ehlersdanlos
It is a common myth everyone with Ehlers Danlos Syndrome is hypermobile. However, I am one of the ones that is pretty hypermobile. I can’t show you everything because I couldn’t take photos doing these things but like many others I can get my legs over my head, touch the floor standing up straight, bend my thumb and index fingers to my wrists, get my hands around my wrists, neck rotate my arms and knees and ankles further than normal , put my hands together vertically behind my back, undo my own dresses , do the crab and sit in the Buddah praying position. The only thing I can’t really do is touch my nose with my tongue. ——————————————————————-
Although this all may seem quite cool and maybe even normal but it causes me to bruise easily, prone to dislocations when I move and sleep and falling where my bones break easily. If you are interested in how hypermobile you are you can look up the Beighton Scale. However, just because you are hypermobile does not mean you may have Ehlers Danlos Syndrome. It is when you have other malfunctions in your body normally because connective tissue is everywhere and others associated symptoms like chronic fatigue, dizziness, low blood pressure , constant pain etc
#eds #heds #ehlersdanlos #ehlersdanlossyndrome #ehlersdanlossyndromes #ehlersdanlosawareness #ehlersdanlostype3 #ehlersdanloslife #edslife #ehlersdanlossociety #ehlersdanlosawarenessmonth #edsawarenessmonth #edsawarenessmonth2018 #hypermobility #hypermobilityspectrumdisorders #hypermobilityspectrumdisorders #hypermobilityawareness #hypermobilityproblems #hypermobilitysyndromes #hypermobilityjointsyndrome #chronicpain #spoonies #chronicillnessblogger #chronicillnessblog #chronicillnessbloggers
Le salut ne s'obtient qu'en lui, car, nulle part dans le monde entier Dieu n'a donné aux êtres humains quelqu'un d'autre par qui nous pourrions être sauvés.
Verset de la semaine du 17 au 23 novembre 2018
#jesus #foi #unitédanslafoi
# #unitéenchrist #EDS #ecoledusabbat
Not having a good time mentally or physically and got a fluey bug on top of everything else🤢 However was able to get out for an hour this morning to do some assistance dog training with Jeffrey and the fresh air made the world of difference 🌟
⭐For the purposes of accountability⭐... we started Cani-X today. With EDS and fibromyalgia, getting fit and exercise in general is really tough. When I do sports with my dogs, I don't just feel a bit tired and easily recover, it can hit me for days. I will have full body pain alongside joint specific, complete exhaustion etc which limits what I do with my dogs. Scared of how this could affect me, I've put off doing what I wanted to do, get fit and finally start jogging. My youngest has a non-pupil day so she joined me, she's thinking of cani-x with Tequila. So my plan is to begin jogging 2x a week to begin with. Gives me plenty of time to rest up in between. I will then gradually increase distance with fitness and I'm also planning to start parkour once I'm a little fitter. Anyone else fancy starting their fitness journey with us? I'd be happy to set up a group chat for support and encouragement and accountability, because support and accountability are what I lack. I'm not the most disciplined with my own health and fitness, so need to have people checking in with me, often making me do things til they become a habit.
#gettingfit #accountability #healthandfitness #jogging #groupsupport #canix #dogsports #fitdogs #smoothcollie #collielife #czechoslovakianwolfdog #csv #canelupo #rarebreed #running #caninefitness #personalfitness #workout #dogtraining #beinghealthy #exercising #gettingfitwithmydog #healthybodyhealthymind #eds #fibromyalgia #fibro #chronicillness
Hari is back! 🔥🔥 Hari har de sidste 3 måneder boet i LA, hvor han har danset nogen af de bedste og hotteste steder! Han er nu tilbage i Danmark og klar til at inspirere og undervise jer.
Han underviser i morgen og næste tirsdag i Odense og det bliver mega fedt! Kom friske og tag endelig en veninde/ven under armen.
Alle er velkommen! 😍
You dont want to miss this! 🙌🏼 #allthatmattersisloveandpassion #loveisthekey #gikokostyle #komeranezastudios #eds
✭ Pilates ✭
Having a life long connective tissue disorder has proven it’s challenges over the years and I am constantly sourcing new non- pharmaceutical methods to combat the symptoms. .
Physicians have been telling me for years to do pilates and I never really found the time. So recently I found the time and went to a few classes at @s.c.pilates
and it’s definitely not as easy as it looks! .
But I can definitely see the long term benefits of this low- impact workout that increases flexibility and muscular strength. While also focusing on proper postural alignment, core strength and muscle balance.
Cheers to all those amazing people out there who have read or followed my blog - never would I have expected this response I am so humbled it by it. You all are such beautiful souls and I hope you share your story one day too so I can read it 🙈
This has already been such a surreal experience and I can’t wait to see what happens next. For me it is like writing a diary: it’s raw, real and often controversial, but it’s my life and a blog is just the individuals perspective - although sometimes even I get a little scared of sharing!
Thank you again all so much, I hope to keep posting as often as I can as so many things inspire me and I have been wanting for years to share how I feel.
Now I never want to stop until everyone knows what Ehlers-Danlos Syndrome is 🦓🦓🦓 #ehlersdanlossyndrome #blog #gratitude #thankyou
Next up from our lovely team, is our lovely Leanne.
Leanne is one of AHC's new Exercise Physiologists who has always had a passion for health and being active. Leanne spends as much time as possible outdoors enjoying the sunshine and has tried her hand at many sports including netball, soccer, tennis and swimming (although not having success with all of these!). Leanne has completed a Bachelor of Exercise and Sport Science and following this a Masters in Clinical Exercise Physiology both at Deakin University. Leanne’s favourite part of what she does is helping people to achieve their goals and improve their health and quality of life through exercise.
Leanne’s past experience is working in a private practice specialising in neurological conditions and working in a large commercial gym, helping those with musculoskeletal injuries return to performing at their best. Leanne is passionate about using exercise for the many health benefits it brings for those from all walks of life, however believes she has found a particular passion for helping those with pain and fatigue to really change their lives for the better. Leanne is enjoying to continue to research and learn more and more about this area every day!
In addition to her experience as an Exercise Physiologist, Leanne has worked over the years as a personal trainer, group fitness instructor, in customer service and with athletes as a sports trainer for semi-professional sport clubs.
In her time off Leanne enjoys keeping active herself, reading, travel, pilates, being close to the beach or water, spending time with friends and family and watching the 2018 AFL grand final.
Stay tuned, we'll be introducing the rest of the team shortly!
A stranger sent me this DM yesterday, and it really rubbed me the wrong way. Someone I've never talked to, who has never liked one of my images and does not follow me, decided to message me to seemingly imply that I should question MY diagnosis and treatment??? Is this person just mass-DMing everyone who uses an EDS hashtag because she feels like it must be misdiagnosed and could be lupus instead since she thinks that's what happened to her? This isn't okay. One thing I see complained about in the CI community all the time is how annoying it is to get unsolicited advice. This person believes that because she identities as chronically ill that gives her the right to give me advice?! She knows nothing about me. She doesn't know when or how I was diagnosed. She doesn't know that I have multiple 1st degree relatives also affected, which made my diagnosis much easier than most people who wait years trying to figure it out. As soon as I started having issues, we knew what the likely cause was. Sigh. I just can't believe anyone would think this is acceptable. No thank you. I trust my doctors, not an Instagram stranger, and am managing as well as I can. Planting seeds of doubt about my diagnosis and treatment, no matter "best intentions" in my healing, is not helpful. Instagram is so weird sometimes. Cool, share your story, but do it on your page and not by calling others' diagnoses into question and without trying to make other people worry that maybe they have lupus because they never saw a tick either. I bet someone out there WILL fall into a Google blackhole of researching Lupus symptoms after a random DM like that. Not helpful! Gah!
[ID: Instagram conversation as follows. Stranger stays: hello I was misdiagnosed with fibro then EDS then MS then lupus for 6 years. It turned out to be Lyme disease and I've never even seen a tick in my life. Everyone I've met in treatment for Lyme was misdiagnosed for years. So I'm trying to share my story in hopes of helping others. Wishing you the best of healing. To which I replied: hi I am confident in my geneticist and other specialist diagnostic process and my treatment/management. But thanks for checking in.]
💛 My family. In January 2017, my life was falling apart, not unlike my body. I needed more information- answers. A private professor Rodney Grahame in London could see me and assess my situation. Professor G recognised a neuro and vascular involvement… he referred me for more private testing. The lay down, standard NHS one claimed ‘no abnormalities detected’. The upright private MRI reported upon ‘clear disc damage, steniosis, dislocations, spinal cord and brain stem compression, and a definitive diagnosis of Cervical Instability and AAI.’ Why so different?
💊 My pain meds are the only reason I can do what I do. They are why I function like a near-human, for the most part. Every month I hold my breath to see if my clinic appt is the day I'm told I'm getting cut off. I've contemplated that day for years now. It's like planning my will.
Chronic pain patients like myself, are the victims of the solution to this insane 'opioid crisis', even though we play NO PART of the problem. 😡
To state it simply, if my body was free of pain relievers and muscle relaxers, I could not move...nor could I breathe. I've denied procedures because local anesthetics and sedatives do NOT work on me. I know this too well. It's terrifying.
I'm not allowed to use any MMJ or I'm cut off my meds by my pain clinic. Pure CBD does nothing for me. No matter how little or how much. Nada. It's fact that CBD works best along with a decent amount of THC. But I cannot HAVE any THC in my pee test, or I am immediately cut off my meds. 😐
My older son graduated a chemist and is part owner and works at a CBD company, so ironically, I can get whatever I need. Including the low dose THC blends that are changing lives. But I won't know if it works until I'm off my meds, so... 😶
In the meantime, I'm going to try PEA (palmitoylethanolamide) and see what happens. I'm surprised it's not talked about that much, but from the tons of research I've done, it can't hurt. And it's 'allowed'. If any zebras have a first hand success story about it, I wanna know.
🙏 Tis the season to be thankful...and aside from all the obvious, I'm thankful for my meds. And the kind people (so far) who allow me to have them... because I'm at their mercy. Literally. At the mercy of the chain of command of the powers that be, who determine if I function or not.
I'm sure one day that will change, but for now I'm grateful and don't want to waste one second.
#chronicpain #painrelief #mylife
#painmeds #ehlersdanlos #eds3 #eds #zebralife #zebraprobs #spoonie #medicine #palmitoylethanolamide #PEA #fuckpain #raredisease #geneticdisorder #connectivetissue #beingthankful #hypermobility
This is not a side i show often. Friday night I had a reaction to my new medication for my pots & starting puking my guts out. Felt like I was dying. Had sinus infection and asperated also. I was dehydrated(still need an IV tbh) sick and tired. THIS is the fact of pots. It’s not always glitz and makeup with me all the time. Tbh, this is how I look on most days. I tend to do several makeup looks on the days I feel well so I have plenty to post on days I’m not doing so good. THIS is what chronic illness looks like. Just because I LOOK ok when you see me( whether in real life or on here) that’s only 5% of MY time. The other 95% is what you DONT see. I don’t like people thinking I’m weak because I assure you I’m a heck of a lot strong than a lot of people know. Try being 24, confined to a recliner or bed 85% of the day, 7 days a week and when you’re out and about you have to use a wheelchair. You miss a lot of life milestones like you’re bestfriends wedding, amusement parks, runs and working. It SUCKS. But, I know I have to keep going and put a face on to keep people from seeing that so I won’t be judged. THATS the world a chronic illness patient deals with.
#faceofdysautonomia #faceofchronicpain #pots #posturalorthostatictachycardiasyndrome #dysautonomia #dysautonomiaawareness #potsie #potslife #eds #ehlersdanlossyndrome #f4f #mua #makeupartist #makeuplife #fenty #kyliecosmetics #colourpop
Gingerbread goals 😉
Today started out not so great and has ended fantastic.
Woke up this morning at 2 and have not been asleep since. My body would just not sleep and we even went back this afternoon to take a nap and I just laid there.
Anyway, my uncle came and joined us for lunch and then Mickeys birthday celebration parade.
And this evening my aunt joined us and we had an amazing time. Hopefully she will be able to join us again after work tomorrow.
Unfortunately I think Indiana Jones has become to shaky for me. We went on it this evening and my vision went weird. But we went on it this morning and it was fine, but it did keep stopping so our car did not get shook.
Luckily though pirates of the Caribbean (my favorite) and cars racers (my other favorite) are still a good to go for me. And of course haunted mansion and Ariel.
More good news is that my favorite bus driver is here again.
And even better I might get to meet some of my favorite youtubers tomorrow because they might come to the park. (Along with some friends from where we live, but we don’t see them other than when we are at Disneyland- I know why???)
Also met a girl with a similar wheelchair as me- should I share the story or no?
So after the comments i received last night i felt the need to write this post.
Craftyzebras is run by me sue from my home in oswaldtwistle im also a mother with two young girls still at home one who is home 24/7 due to serious illness #EDS #chrons
i take a day off through the week to spend a day at childrens hospital for my daughter to receive treatment. Just over a week a go a lovely lady @cleanqueen25
reviewed our product and my business went to the next level yes there has been teething problems and yes there has been a wait for some people getting there items but ive been working close to 10 hours a day and will not rush and send a product im not happy with i take pride in my work and i hope people that have receive there orders can see this for the people that are not happy and are quoting they will take there business else where im sorry you feel this way but there is not alot more i can physicallly do.
💥💥💥Кто еще не в курсе, что #EnergiDietSmart
- сбалансирование питание,т.е еда нового поколения в которой содержится необходимое для полноценного питания без лишних каллорий! Для меня коктейли#EnergiDietSmart
самая вкусная и полезная альтернатива фастфуду. ПОЛЕЗНО! В каждой порции содержится баланс белков, жиров, углеводов, витаминов, минералов, клетчатки. ВКУСНО! Выбирай любой вкус любимого лакомства и получай удовольствие. БЫСТРО! Готовится за 1 минуту! УДОБНО! Порционированные пакетики легко помещаются в сумке, кармане. И еще #EDS
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Купить можно в любом магазине #nlstore
🆔️ 007-2992315 Елена
Пиши в вацап #8951
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или заходи по ссылке в шапке профиля!!! #EnergiDietSmart #nlstore #сбалансированноепитание #умнаяеда #пп #моймагазин #здоровье #ЗОЖ
So... had a rheumatology panel ran again the other day and lo and behold it finally came up positive. 🤷♀️ This is not a big surprise as I have a long list of autoimmune symptoms and have had for years, and I have several close relatives with SLE and RA... but I've had these tests before and they kept coming back negative. The results were enough for my doctor to refer me to a rheumatologist finally. Yay? Here goes nothin. (I should probably mention I've been in a flare for about 5 days, so maybe that's why they came up positive finally? I dunno)
#chronicillness #chronicpain #ehlersdanlos #pots #dysautonomia #spoonie #chronicillnesswarrior #mcas #autoimmune #eds