July 31, 2013 at 2:58 pm #506jenhsmomsp2Participant
I’m liking everyone’s entries so much! Us zebras are awesome. 😀
Here’s my poem entry, related to having POTS.
The walls are moving,
There is no floor,
I just want to get,
To the bathroom door.
The blood pressure drops,
When the fluids are low,
The salt intake,
Is going to slow.
The floors are a mess,
The laundry is waiting,
The dogs need out,
My bladder is debating.
The children are bored,
Their joints are popping,
The computers are overused,
Yet BP keeps dropping.
Dizzy spells are common,
Fainting is our dancing,
Is our way of prancing.
Autonomic is lost,
Function is depleted,
I’m thinking even,
Chocolate is defeated.
I make designs to sell on zazzle with photoshop. You can see the artwork here:
http://www.zazzle.ca/jenhsmomsp2 Be sure to check out the zebra products! 🙂 (shameless plug LOL)August 1, 2013 at 10:01 am #4016Dr. DianaKeymaster
Awesome! I especially like “Normal is just a knob on the washing machine”. HA! All plugs carry no shame here! That is sort of the point, everyone! Plug away! BTW, something else we need to fix. Until then, for hyperlinks, just cut and paste them into your browser, OK? 🙂August 1, 2013 at 10:35 am #4019BarbaraParticipant
I like the bit where you are checking the floor, while you’re down there. It made me smile, it’s funny how we all manage to keep our sense of humour despite the ordeal we’re all going through.
(UK)August 2, 2013 at 7:09 pm #4035
Hello, this is the first time i post anything in here. I´m from Costa Rica.
I have HEDS, Dysautonomia and mild POTS pls secondary Fibromyalgia. I´m 34 years old, i was diagnosed this year. I have a daughter showing symptoms,one of my brothers has EDS, mom, grandma and some uncles as well. I´m the first with an official Diagnosis in my family.
I started as a dancer, i really wanted to be a dancer, but such is life and could not go on with it. My symptoms started when i was in highschool and got worse in my teenager years, then when i had my daughter i developed strong chronic pain, secondary fibromyalgia and in the past 5 years my Dysautonomia got stronger.
I became an artist after years and years of learning, practicing and studying on my own, my mom is an artist as well. For years and years i tried to publish my art, participated in online contests, showed my art in many forums, websites, blogs, i did a few small exhibitions, i also went to Belgium and Netherlands to show my art, it went well, but the trips are too expensive for me to keep on participating in Conventions. Here in Costa Rica, people like my art but i no longer sell art, people love fantasy but they wont buy it. I tried a few festivals here as well, but the pain got too bad, i was left exhausted each time i participated in festivals and i sold too little. I simply cannot compete with other people out there who can produce great art at all times, going to conventions, making art exhibitions, sending portfolios online and keep up with a blog, i no longer have the energy or time to spend just drawing and making art, my family needs me to be more productive so art is just a hobby now.
12 years ago i started learning photography when i got married and i also discovered in 2008 that i could sing. I tried to sing in public several times, i also had a folk music project where i played recorder and sometimes accordion ( i learned a little bit on my own ) but the Dysautonomia, anxiety and panic attacks prevented me to keep on singing and playing in public, every time i tried again it got worse and i was left all stressed out with insomnia, night sweats and neck contractures due to stress. The folk project dissipated in time. Out of frustration i tried piano lessons and guitar but my hypermobile fingers would not let me, i also had to stop drawing and painting for almost two years when my symptoms got worse in 2010. Now i draw and paint less because my hands hurt too much. I got finger splints so i want to try piano again this year or next one. I started uploading videos on youtube of me singing over songs i love, eventually someone saw me and i was hired to sing for an Indie album in 2012. Hopefully in the future i will be able to record my voice again.
Holding a Camera became a problem as well, my wrists and fingers hurt way too much after a few minutes holding the camera, i cannot remain standing for more than 10 minutes without having excruciating pain in my feet, legs, back and hips. My hip subluxates daily and i have plantar fasciitis, add to it rcurrent sprains, joint instability, dislocations, tendinitis…you know how it is so i only take photos when it is strictly necessary, for weddings ( once or twice a year ) special events and i usually have an assistant for this.
I had to keep on doing something to earn some money, so now i work for the family business, a photo studio, I edit and print all the photos and portraits here at home. I restore old and damaged photographs as well. We live a modest life, we still have no car, no house of our own, we do not travel often, i cannot dance as i used to and i do not earn money from my art at all, but this is me, this is what i like to do, this is what keeps me sane 😀
These are sme links to what i like to do.
Singing in spanish: http://motelasimov.bandcamp.com/track/polaristel ( there are more songs if you click the name *Motel Asimov* )
And i´m also uploading a few art, photo manip and photography samples right here.
Thanks for this opportunity. EDS complicated absolutely everything and stole my dreams from me, but i have been able to fulfill a few, perhaps not in the manner i wanted but i will always create art, will take photos and will sing my lungs out until i can no more.August 2, 2013 at 7:25 pm #4036
I dont know if i´m abusing this, but i also wanted to show you these, i hope you dont mind.September 19, 2013 at 9:07 pm #4393Dr. DianaKeymaster
O.M.G. Fabiness, Somehow I missed these! WOOOOWWWW!!!!! Where do I start?! There is nothing I don’t love here! Can you all “feel” the dancer in her? I can! I think many of us hypermobile folks loved dancing, and at some point may have had to give it up. But I feel it with the beauty of these shots, and the drawings. ASTOUNDING work!!! I hope you hang out a bit more on our forum, Hon, and help keep us all motivated to keep going. Because if you can do this when you are ill, imagine what we can all do if we just encourage each other? These are inspiring in so many ways. Thank you! 🙂September 24, 2013 at 3:17 pm #4420
Thank you so much Diana. I was made to make art, every other single thing i´ve tried makes me feel nothing at all. I really hope this can help a little bit to encourage other EDSers to try art. It is good for the soul, for your brain and mood. I would like to participate more often in here as well 🙂
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