DINET member name: Joey Horist Joey's hometown: Addison, IL Diagnosis: POTS, Gastroparesis email: email@example.com YouTube Trailer: https://youtu.be/c_LuB8iDdcE Facebook: https://www.facebook.com/joey.horist
In Joey's words......
I was recently diagnosed with Gastroparesis and for 9 years now I have been dealing with Postural Orthostatic Tachycardia syndrome. It snuck up on me late one summer night and life has not been the same since. Unfortunately, due to my health, I almost didn't finish high school & I have since had to put my college studies on hold. For the first two years of my illness, I was almost bedridden, so I had to be homeschooled. With all my spare time being trapped in my house I started jotting down story ideas that would pop in my head. I had originally intended to write a creepypasta story, but after having dinner one night I had a chance encounter with someone who turned out to be a local filmmaker. It was then that I decided to take my scary internet story and turn it into something bigger. I had never written a movie script before so updating my story proved to be quite challenging. Almost everything I know about screenwriting has been mostly self-taught, many hours on google looking up different terminologies. Many late nights (which is already common when you have POTS) and a year and a half of hard work later and I am proud to announce that my first short film, "Mentis" is complete and is currently in the film festival circuit. I invite you all to check out my movie's trailer at the Youtube link above. Film festivals prevent me from publicly sharing the full movie at this time, but if you watch the trailer and you like what you see, feel free to contact me through social media or email and I will gladly share the movie with you. I just ask that you please respect the privacy rule.
DINET asked Joey, Was there something about the process that helped you cope better with what was happening to your health? Or were you always interested in writing for film and being home all the time seemed like a good time to start?
DINET member name: Suzanne Krasnow Suzanne's hometown: Maple Lake, MN Diagnosis: POTS Website: www.WarriorAngelCreations.com
In Suzanne's words....
In 2013, my life was forever changed when I suddenly became ill and began passing out randomly and losing control of my own body. I went from being an Active Duty Airman to being completely reliant on my family and a wheelchair. It took a few months for doctors to figure out I had developed an autonomic disorder called Postural Orthostatic Tachycardia Syndrome (POTS). I learned that many of the functions in my body that are supposed to be automatic no longer work properly. When I stand up, my body no longer properly compensates for gravity and adjusts the way my blood flows. When I stand for more than 10 minutes my blood begins to pool in my extremities, my heart goes into overdrive trying to compensate, and I begin to lose blood flow to my brain, which causes me to randomly pass out. Needless to say, I became very limited on what I could do every day. This condition was a huge adjustment for me. I turned to art and crafting as a way to cope. I began knitting while I was in and out of the hospital. Once I was forced into an early retirement by the Air Force, I realized I needed to find a job I could do that was meaningful, but I could do from home. I still had to find a way to support my family and keep my mind busy.
Unfortunately, in 2015 my condition worsened and I began requiring the use of a wheelchair. It took me a while to admit to my doctors I needed one, but I was so glad I finally did. This chair has given me my life back! I cried with joy the day I got it. This chair meant I can go out with my family for all day functions. I could go on that shopping trip to multiple stores with the girls again. I could live outside my house again and not have to worry. I didn’t realize I had begun isolating myself.
Suzanne's art is born.....
Those who know me, know I love color, I love laughter, and I love life. I had turned my back on these things when I got sick. My wheelchair made me realize I needed these things back in my life to make myself heal mentally. Well once I got my wheelchair the first thing I wanted to do was “pimp my ride.” I found all kinds of accessories for my chair, but nothing fun, nothing loud, nothing colorful. Everything was black! I refuse to hide because I have a wheelchair. This chair gave me wings and allowed me to fly, why not rejoice in its blessing. I realized if I wanted fun and color, I needed to make my own products. This was the birth of Warrior Angel Creations. I am proud of my little company and the products I have been making for the past year for fellow wheelchair users. I love making these items and love more than anything the smiles and stories of happiness I get from users who were excited to find something special and “not black” that would work for them!
Suzanne's site and etsy shop are filled with fabrics to appeal to whatever your style may be. You can reach Suzanne through her site or you can private message her through the DINET forum.
DINET member name: Jayne The Daily Manic Jayne's hometown: Geelong, Victoria, Australia Diagnosis: EDS (Hypermobility type) and Dysautonomia Blog: www.thedailymanic.com website: https://thechangeplace.com.au/ On ebay: https://m.ebay.com/itm/Freedom-to-Choose-Online-Life-Coaching-Program/182862702659?hash=item2a93776843:g:6XcAAOSworNaCTVp
In Jayne's words.....
I have been diagnosed with Ehlers Danlos Syndrome (Hypermobility Type) and Dysautonomia. Dysautonomia has been the thing that has forced me to considerably change the way I live and work.
After having gone through massive life change myself, I wanted to combine what I had learnt, together with my coaching experience, into something that would help others in a similar predicament. I was also very keen to develop something that was an affordable alternative to conventional life coaching, since finances often get impacted when you become ill or when life changes. I am really passionate about helping others and wanted to continue to do so with something that suits the way I now need to work and that is also readily accessible for people who may not be able to afford or get out to see a life coach.
Jayne on finding your purpose....
What Jayne does.....
I manage my own blog thedailymanic.com aimed at providing support to those who wish to slow down – whether due to illness or just to escape the madness that is life! I am also a trained change coach by trade (my business is called thechangeplace.com.au) and I’m now converting a lot of my knowledge into online products that hopefully should make it easier for me to contribute towards something I am very passionate about. The project that I have recently launched is a self-paced online life change program called Freedom to Choose which is for anyone who needs to slow down or live life differently. It’s a 12 week (or thereabouts) program aimed at prompting reflection on how you are living your life currently and identifying a new vision to aim for. The program is available for purchase for USD $60 (or make an offer!) which includes membership of a Facebook coaching group and support via Messenger group (both managed by me).
Note: Jayne has generously offered to make a donation from any product purchased through her ebay shop. Thank you Jayne for your support of DINET.
DINET Member Name: videopaw Lyndsie's hometown: Anaheim, CA Diagnosis: POTS website: https://www.etsy.com/shop/SulleysSpot
In Lyndsie's words......
My name is Lyndsie and my service dog in training is Sulley. Sulley’s Spot was created after James P Sullivan aka Sulley. He is a labradane who will be a medical alert and mobility dog trained to assist me through the day. He is learning to pick up on changes in my heart rate and guide me to a safe place along with many other things. I am unable to leave the house without fear and Sulley has been a great help. He provides me with the security I need to go out in public independently.
Sulley’s Spot designs collars that are 1.5” and 2” wide created for medium to large breed dogs. All collars are handmade using heavy duty webbing and ribbon or fabric of your choice. If you don’t see something you like please let me know and I will do my best to find a pattern you like.
Above photo: Sulley, the pup that inspired it all. Sulley is wearing one of the collars that Lyndsie makes. Above also are two other collars made by Lyndsie. These are just samples, check out her Etsy storefront to see them all. And contact her if you don't see something that you want. Lyndsie is happy to work with you directly.
DINET member name: Skydersaur Skyler's hometown: Dallas Fort Worth, TX Diagnosis: Inappropriate sinus tachycardia, autonomic dysfunction and most recently ME/CFS Blog: https://spoiledbrats.org
In Skyler's words.....
I started blogging about natural health and wellness a few months ago after I married a very technologically talented man. We have both relied on natural remedies to go along with our prescribed medications and decided we should be sharing our healing with others! While my husband does all of the behind-the-scenes work on my website, I write the content and take photographs for it - two things I have always loved to do that chronic illness has not taken away from me. I enjoy hearing others share their story of wellness and contributing to it by sharing what has worked for me. One of my favorite natural wellness tools to use is essential oils. I have found that aromatherapy is great for days that I am feeling quite fatigued, and I am discovering other uses for essential oils, like topical application for pain. This blog has helped me rediscover my love of learning, sharing knowledge, and serving others!
DINET member name: Dot Dash Hilde Dorothy's hometown: Victoria, British Columbia, Canada Diagnosis: POTS Website: https://www.amazon.com/Ms.-Dorothy-L.-Hilde/e/B0748429VH Photography Website: www.dorothyhildeart.com Email: firstname.lastname@example.org
Dorothy Hilde is a mother of two boys. She lives in Saanichton, B.C. She has
one grandson, Sawyer, and a mischievous rescue, Dash. She has a passion for photography, gardening, writing, and art. She is a published author with a series of children’s books called the Life of Dash. Her favorite past-time is hiking (latte in hand) along the seaside or in the dense rain-forest of Vancouver Island with her dog, Dash, a.k.a. the blue-eyed beauty.
Dorothy's most recent book "What's on your nose?" is being released on December 15th on Amazon.com at the link above.
From Dorothy about the book....
"In this humorous tale of a dog, her companions, and a little girl, we learn about why dogs wear muzzles, that muzzles are not scary and that not only do people muzzle their dogs due to “regulation,” but that there are 34 other reasons to choose to muzzle a dog… heck… and probably more!"
In Dorothy's words.....
"I am 47 and I suffer from dysautonomia/POTS. I felt I was "crazy;" was told I was a "hypochondriac" and that 20-year-old woman go around fainting for attention, not 40-year-old woman. It took 25 years to be diagnosed. Many people around me never believed or do not believe that I have a chronic illness. I put on a brave face.
I have good days, bad days, and in between days. Days of fluctuating levels of syncope, presyncope, serenity, anxiety, pain, exhaustion, foggy head – just to name a few of my symptoms. Days where day-to-day activities are so overwhelming that the only recourse is to
hibernate; however, for myself, hibernation is the worst thing that I can do. Resting causes my blood pressure to drop. A day of rest can send me into a tailspin of days of presyncope and ultimately syncope.
In October of 2015, I adopted a rescue from Yellowknife. Her name is Dash. She is a Siberian husky x, who is a mischievous, lovable, naughty, grey hair causing dog? A rendition of a true husky owner's life. Having to walk her on a daily basis has forced me to push through the bad days and get out and get moving.
I cannot express enough how important it is for individuals with chronic illness to have a good support system and I would like to thank DINET for all your resources in this respect and for the opportunity to be part of this project."
Photo: Dash the Siberian Husky who inspired Dorothy's series of children's books. Photo by Dorothy Hilde.
DINET member name: Cassandra Pacquin Cassandra's hometown: Cool Springs, NC Diagnosis: EDS, Mast Cell, Congestive Heart Failure email: email@example.com website: Eagles Wings Studio https://www.facebook.com/EaglesWingsStudioNC/
In Cassandra's words.....
Hello!! My name is Cassandra and I'm an EDS Trifecta Zebra with Dysautonomia and Mast Cell as well as congestive heart failure. I'm a chef/owner of our family artisan granola bakery business.
Over the past year I've had to refocus my energy and talents due to my limitations and have gone back to my original loves of mixed media inspirational art and writing. I love being able to put my education from UMass/Amherst in Fine Arts to good use again!!
My pieces are combined mixed texture and finish high-end papers, Austrian Crystals, silk and textured mat finish, and shadow boxes with glass fronts. Each is an original and crafted with love and inspiration.
The purple piece is one I recently sold, the one of the leaves is a work in progress that will be 2 6x6 matching pieces with Ecclesiastes 3:1 "To every season..." split between the two. It comprises 4 different colors of textured papers and Swarovski Austrian crystals in amber, and will be matted in a dark brown beveled mat finish and framed in matching black shadow boxes. The pink piece is currently available for sale on the Eagles Wings Studios FB page.
DINET member name: Missy Milton Missy's home town: Fayetteville, AR Diagnosis: Dysautonomia (POTS & NCS) website: https://www.melissamiltonart.com/
In Missy’s words…….
Living with dysautonomia requires me to spend many chunks of hours laying down. Laying down is a necessary tool for regulating my roller coaster blood pressure. After about a year of spending so much time being “stuck horizontal” a dreadful, negative boredom ensued. I decided to start painting again as a fun way to pass the time when I can’t move about. Before my illness, It had been over 30 years since I had painted but it came back to me quickly.
I use magnetized paint brushes and pencil on an ipad with an inexpensive (under $10) painting software. Creating digital art this way, instead of traditional paintings, keeps me from worrying about spilling paint on my bed or sofa.
Nowadays, when I’m laying down I create artistically. I’ve started composing music recently and I just launched my website which includes my portfolio of art and a new blog. When I’m able to sit up and/or move about, I do more day-to-day things, such as water the plants or fold the laundry. The combination of the day-to-day activities and my creative projects, strikes a balance in my life which, for me, creates cheerful contentment. My body may malfunction in certain ways, but I feel whole.
At left: "Night Flowers" Right "That time I found a fairy"
More about Missy......Missy’s attitude towards her life and her illness are evident in this quote she sent in with her application
Missy’s new website is her latest creation. It includes Missy’s art portfolio and her newly started blog. A blog that her adult children have encouraged her to write for a few years. It also includes a recording of her original music. Be sure to check out the great story she tells about her grandmother in the About Us section. Missy’s painting “Water Freedom”, featured here, is enjoying success in the 2017 Rare Artist Contest - a contest for artists with rare diseases. http://m.heyo.com/198fe2 Be sure to vote while you're there!
Missy can be reached by email through her site at https://www.melissamiltonart.com/contact-1/
DINET member name: B.KELS Kelsey's home town: Los Angeles, CA Diagnosis: POTS/NCS Music video link: https://vimeo.com/224607332 My portfolio: https://bkelsstudio.cargocollective.com/
Notes on the project: My name is Kelsey Boncato and I am an LA-based visual artist living with POTS/NCS. My project is a music video I animated and directed for the electronic soul group, Idesia. The piece is entitled “Ain’t Over” This video was a collaborative effort. The Music Producer, Co-Director and writer of the music and lyrics to this song is Daniel Oldham. Daniel also lives a life strongly affected by dysautonomia. His younger sister has POTS and other underlying illnesses and was a strong influence on the creation of this song.
The music and video to “Ain’t Over” evoke messages about finding strength within the state of being vulnerable and taking control of your path. The music, lyrics and animations work together to approach soulful and emotive tones that are minimal yet complex. This is highlighted throughout the piece, essentially producing its’ meditative essence.
The lyrics were inspired by a multitude of events around the end of last year. Daniel’s sister was hospitalized again during the Christmas holiday, due to multiple complications. Since the song’s conception, it has provided a sense of hope and a reminder that even in knowing the difficulties life presents, we can continue to flourish. (Read the lyrics)
The song “Ain’t Over” is sung by Sophie Dimitroff, the lead singer for Idesia. Daniel also plays bass guitar on the song. All involved are USC graduates. Kelsey’s portfolio can be seen at https://bkelsstudio.cargocollective.com/ and more about Daniel can be seen at http://danieloldham.com/ For more about Idesia and to hear more of their music, visit http://idesiamusic.com/
read the Featured Member story of Kelsey Boncato Watch the video, hear the music
"Ain't Over" , performed by Idesia, lyrics by Daniel Oldham
Those quiet tries, they mean something
Those tired eyes, they're worth something
And those grey skies, not fooled by no false pride, sweet lies
Always on our feet while we're still breathing
Ain't gonna retreat, this fight is freein’
Looking for belief are you?
That dream I told ya, ain't ever over
This world don't own us,
This dream ain’t over
Those hollow sighs, they help somehow
Those absent cries, they're heard somewhere
And those high times love ‘em
Lost as soon as they're found, lost as soon as they’re found,
No blind circumstance or lucky break
This life we'll make, no one can take
That dream I told ya, ain't ever over
This world don't own us,
This dream ain’t over