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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

Member Stories

edriscoll
DINET member name:  Katie Haynes
Katie's hometown:  Youngsville, NC
Diagnosis:  POTS, EDS, MCAS, AMPS (Amplified Musculoskeletal Pain Syndrome), IBS, Alopecia
Photography: https://www.facebook.com/KatieHaynesPhotography/
Smiling While Sending Hope: https://www.facebook.com/Smiling-While-Sending-Hope-561096004224670/
VOG project:  https://www.facebook.com/pg/Smiling-While-Sending-Hope-561096004224670/photos/?tab=album&album_id=563489880651949
Cambridge Mask project:  https://www.facebook.com/pg/Smiling-While-Sending-Hope-561096004224670/photos/?tab=album&album_id=589899214677682

In Katie's words...
A little bit about me: I’m 18 years old and I have POTS, EDS Type 3 and MCAS.and a few other illnesses.  I love photography and started my own photography business.  I also love sports, shooting, hunting, showing rabbits, crabbing and graphic design.  But my mission in life is to help other people. 
Helping others has been a big mission my whole life, even before getting sick, to make an impact on people’s lives.  I believe I do that by organizing toy drives, making comfort packages for local children’s hospitals, making awareness videos and my VOG and Cambridge Mask projects. Making an impact on others lives is what I love to do. I believe that this mission will continue to grow and continue to help many others in the near future!
Katie’s joy…..
I love to bring joy to kids and teens faces and make them feel at ease while they face big obstacles in their lives whether that be chemo, a transplant, or some other health challenges. I have done this project of toy drives on my own now for about 5 years. I also have sponsored local families in need of certain items. Along with that, in December of 2017, I launched a project where I send comfort packages and masks to people fighting chronic illness. I also created a facebook page to help grow my project in January of 2018.
I also give out packages and/or masks to the teens that I meet in the area and at the hospitals. This is my main long-term goal; to grow this and make it bigger each year. I find people’s stories that speak to me and share them in groups that I’m a part of.  And I send masks or packages to as many people as possible. Due to cost, I keep the packages that I give out mostly local, but I have mailed many masks and will continue to do so as funding allows.  I also keep it local because I like to meet each of the warriors in person and spend some time with them.  
What inspires Katie…..
I was inspired to start this to get involved about 7 years ago when Paxton, a little boy at my church, passed away. Not long after his passing, I helped with a toy drive called "Presents for Paxton" for UNC Hospital.
A few years later, I went camping and met a girl named Skyla Rippy who has a rare blood disorder called Diamond Black-Fan Anemia. We got to know each other very well, and now we are very good friends. When I found out that she was receiving care at hospital local to me, I started going with her to her appointments and began to do research on childhood illnesses/cancer. I then started workshops and presentations to share with others about what I had learned. I also became friends with kids I would meet at the hospital on social media and in real life.

 
 
edriscoll
DINET member name:  LotsofLoveByRuth
Ruth's hometown:  St. Louis, Missouri
Diagnosis:  POTS, CFS
Website:  www.etsy.com/shop/indiangirl4him
In Ruth's words...
I  was officially diagnosed with POTS, as well as Chronic Fatigue Disorder in April 2015. Before my diagnosis, I was constantly on the go and having to depend on others for leaving the house has been frustrating.  My psychiatrist suggested I find a craft or hobby to make me feel like I’m contributing something to the world, so I started making natural products and selling them in February of 2017.
Before POTS, I didn’t take any medicine.  Then the doctors started overloading me with prescriptions and it was very rough on my body.  By using and selling Young Living essential oils and toxin-free products, my quality of life has been improving a bit.  I’ve always been interested in homeopathic remedies and this makes me feel like there’s a tiny part of my life that I have control over. I sell soaps and lip balms, plus I make jewelry now too and whatever else comes to mind.  It gives me so much pride and a sense of independence.  And the little bit of cash it brings in is a big help too.  
I love to sing, read and talk to people.  I live with my fiance but he works two jobs to cover our living expenses because I’m not working and still struggling to get disability benefits approved.  I used to have a caregiver during the hours that my fiancee was at work.  But since Medicaid reduced the caregiver hours, I am on my own now when he’s at work. I’m a very social person so being at home by myself so much is difficult for me.  I battle depression so I try to keep myself occupied when I’m alone.  My work with homeopathic remedies helps with this quite a bit.  And I am so grateful to friends, family, and church for being so supportive.  My faith gets me through and I try to focus on the positive.  I am especially grateful to my fiancee who sacrifices so much to help me care for myself.
edriscoll
DINET member name:  Rachel Friemel
Rachel's hometown:  Davenport, IA
Diagnosis:  Dysautonomia
Website:  http://www.rachelfriemel.com and
https://www.saatchiart.com/LittleRae
In Rachel's words....
I am a digital and fine artist as well as a photographer and graphic designer. I started showing symptoms of dysautonomia during my senior year of college while I was working on my Honors art show.
My skills are versatile, so depending on what symptoms are flaring up, I can still work on creating pieces of art.  Screen Printing and Digital art are the most "Spoonie Friendly" mediums for me. Screen printing and digital mediums are a blessing because there is no time frame on when a step needs to be finished.  If I'm having a bad flare and can't get to a piece for a few weeks, it will still be waiting for me. 
I do have bad days when there is nothing I can do, but I use that downtime to enjoy other artist's work.
Her work can be seen on her site,  http://www.rachelfriemel.com  and also on the site,  https://www.saatchiart.com/LittleRae  The saatchiart site has the added bonus of showing the art and collections that Rachel enjoys viewing, in addition to showing her work.  
 
edriscoll
DINET member name:  Joey Horist
Joey's hometown:  Addison, IL
Diagnosis:  POTS, Gastroparesis
email:  sharperjoedog@aol.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?
   
 
 
edriscoll
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.
edriscoll
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.
edriscoll
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. 
https://www.etsy.com/shop/SulleysSpot
Instagram @sulleysspot
 
 

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.
edriscoll
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!  
 
edriscoll
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:  timely_dottie@hotmail.com
About Dorothy....
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.
edriscoll
DINET member name:  Cassandra Pacquin
Cassandra's hometown: Cool Springs, NC
Diagnosis: EDS, Mast Cell, Congestive Heart Failure
email: juscass86@gmail.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. 
 
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