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Member Stories

Isabelle is a young, creative entrepreneur but that wasn’t always her plan. She excelled at tennis as a preteen and hoped to pursue it as a full-time career. This seemed possible until an episode of heat stroke during a tennis match caused her heart rate to be sustained around 180 beats per minute for several days thereafter. She knew something was wrong having been a relatively healthy young woman prior to the episode. However, the doctors in the emergency room she visited told her that her symptoms were “all in her head,” and they dismissed her heart rate as a byproduct of being an anxious, preteen girl.
Read the rest of Isabelle's story in the Feb 2019 edition of Dysautonomia News

“ I am always so dizzy!”
That was the beginning. My doctor shrugged his shoulders and said: “ We will keep an eye on that.” I knew something was off but really had nothing to report, I just knew I wasn’t right. I kept feeling like I was going to pass out. One day, I was home alone with my 4-year-old daughter, and I had to lie down on the floor knowing I was going to faint, heart racing, shaking. “ If Mommy goes to sleep on the floor dial 911,” I told my daughter and pointed to the numbers on the phone.  But I recovered.  A week later it happened. I was already wearing a heart monitor because of my complaints about having weird heartbeats. I was at work, a nurse at a cardiac unit, walking down the hall, heart racing and pounding, feeling like my heart was going to explode. When my knees got weak, I leaned against the wall …. when I opened my eyes I was on the floor, panic and noises and activity around me. 168/110, heart rate 160 – that was what they said. Minutes later I was in the ER, admitted and scheduled for a stress test in the morning. The heart monitor showed Tachycardia 160’s for 3 hours prior to the faint.
Read Susanne's full story in the Feb 2019 edition of Dysautonomia News

DINET member name:  Jessica van Woerkom
Jessica's hometown:  Tucson, AZ
Diagnosis:  Generalized dysautonomia (not related to POTS, MCAD)
Website:  Van Woerkom Studios  http://www.jessicavanwoerkom.com 
Facebook:  https://www.facebook.com/vandubstudios/
Twitter:  https://twitter.com/vandubstudiosInstagram: https://www.instagram.com/jessicavanwoerkom/
Jessica's story...
I was officially diagnosed with dysautonomia in 2017 after 4 years of suffering from extreme symptoms. Symptoms severe enough that I was bedridden for 6 months during that time.  I presented with classic symptoms that began after I had a bad case of the flu. Before that, I was healthy, energetic and athletic.
I have generalized dysautonomia; dysautonomia that is not associated with POTS or MCAD.  Shortly after first becoming ill, I was properly diagnosed with unilateral vestibular hypofunction, UVH*.  For two years my doctors attributed some symptoms to UVH and wrote off the rest of my symptoms to hysteria.  They didn’t take my symptoms seriously for far too long. I am still undergoing testing to determine what is triggering my episodes but I finally have a team of good doctors on my side and I am beginning to feel better.
I have spent so much time feeling unwell and unable to maintain the active lifestyle that I used to have.  I turned to my artwork because I can do most of it in bed or while sitting in my studio. Also, I have been able to work on much larger projects that involve a massive amount of prep work and time. I work primarily with found or recycled items for two reasons. 1: that's what I can afford. 2: as a culture, we throw away too many items that are perfectly suited for other uses if we just took the time. In this way, it feels like the way the healthcare community treats people with dysautonomia, too easy and eager to throw away the patient instead of looking for the cause of the problem.
This piece, called “Shifted” is a good example of a piece that may have been difficult for me to do if I didn’t have so much time to fill.  This piece took a year and I was able to put the individual elements together from my couch. This piece is inspired by the idea that you may have the same day, every day and feel like it’s a wasted life (nothing accomplished or experienced).  Until you look at the overall composition, the whole (of your life). It really is a beautiful thing even if each piece of it looks unremarkably the same to you.  Shifted was presented at the 2015 Tucson Sculpture Festival.
I just finished the red, black and white piece at right. This piece is about how everything breaks down over time, and how that division can feel detrimental.  But like the previous piece,, when you look at the whole event there can be beauty in it.
This is a piece that I am currently working on (silver & black image at left).  It is about trying to fill the center of my cells with beauty. Made from recycled receipt cartridges that have been cut into pieces and cast with resin on the center. I am not finished with it yet but would like it to be very large. Like a ceiling feature that undulates overhead like a soft blanket.
Editor’s note about Jessica:  Jessica was interviewed by the Sonaran Arts Network.  The interview discusses Jessica’s choices in materials and how she creates her work.  There are some great photos and very interesting descriptions of her designs. 
Sonaran Interview:
A wonderful thought for all of us in the dysautonomia community who feel discarded or less useful than we once were. Thank you, Jessica, for the reminder.
If you would like to see more of Jessica's work, including architectural design work such as the SuperAdobe Earth Bag Home she designed, please visit her website.

*UVH is defined as a malfunction of the vestibular system in the ear causing the balance system to malfunction, source: http://www.neuropt.org/docs/vsig-english-pt-fact-sheets/unilateral-vestibular-hypofunction.pdf?sfvrsn=2

DINET member name:  Sierraboo214
Sierra's hometown:  Tracy,  CA
Diagnosis: POTS,  Mast Cell Activation Syndrome, Ehlers Danlos Syndrome, PTSD, Gastroparesis, Immunodeficiency 
Website:  https://www.instagram.com/chigos_closet/
Sierra's pillows for patients project:  https://www.gofundme.com/portpatientpillows
In Sierra's words....
I suffer from POTS (stage 3 dysautonomia), mast cell activation syndrome, Ehlers Danlos Syndrome, PTSD, and immunodeficiency.  I currently model and do animal photography.   I love to sing and act, but my newest project is making free port pillows for port-a-cath patients. I send them all over the world and get donations to keep the project going.
I have a service dog named  Chigo.  I do animal photography as well as studying animal psychology in the hopes of one day opening an animal rescue.
I love to help people. I started making port pillows to give to patients for free because I understand the need.  I have been using social media to distribute them to people and I have been collecting donations to cover the costs.  It helps me cope with my own illnesses because it makes me feel like I really have a purpose.

Missy M
DINET member name:  Nadèche Hanique
Nadèche's hometown:  Brabant Province, Holland, Southern Netherlands
Diagnosis: EDS, POTS
Facebook: https://www.facebook.com/happymailforfighters/
Instagram: https://www.instagram.com/happymailforfighters/
Click here to read this profile in Nadeche's native language, Dutch
What inspires Nadèche's work, in her own words...
I have eds, so I’ve been showing symptoms my whole life and was diagnosed when I was 11 years old. I got diagnosed with POTS when I was 19 years old, I am 21 now.
For years I wanted to start my own card project, but I didn’t know how to start etc. Last year I made an Instagram account and I found out that there were other people with chronic illnesses having their own projects to support others and that ’s when I realized I should at least try it.
So I posted a message on Instagram asking if anyone was interested in receiving a personalized card. I got so many requests in such a short amount of time, so I made a different account just for my project and it has been growing ever since! I’ve always wanted to help and support others.  And I can do this work from my own bed, so it works very well for me personally too.   Making others smile, makes me smile! I know from my own experience that it is not always easy to live with chronic illnesses, so I wanted to make the fight for others a little bit easier by supporting them and send them some happy mail to encourage them to keep fighting. I also want to make them feel less alone.
I started Happy Mail for Fighters on the 29th of June 2017. So I’ve been doing this for almost a year now and I hope to continue this project for many years to come!
Nadèche on family and life.....
I’m the only one in my family who has these illnesses. I’m very close with my family and they always support me and help me and I’m very thankful for that! I’m also really thankful that my parents and sister help me with my project. Writing is very difficult for me so my sister writes the addresses on the envelopes and my mom brings the cards to the post office because my chronic fatigue makes it difficult to go to the post office etc. I got diagnosed when I was 11 and I got help from a medical psychologist. She helped me so much and I was so thankful! That’s when I realized that that’s what I want to do in life:  helping others. It has been my dream ever since to become a medical psychologist and I study psychology now. Hopefully, I can help others cope with their illnesses and show them that life is still beautiful and you can still achieve things and follow your dreams.


DINET member name:  Nadèche Hanique
Nadèche's hometown:  Brabant Province, Holland, Southern Netherlands
Diagnosis: EDS, POTS
Facebook: https://www.facebook.com/happymailforfighters/
Instagram: https://www.instagram.com/happymailforfighters/
Wat inspireert werk Nadèche's , in haar eigen woorden ...
Ik heb EDS, dus ik heb met symptomen mijn hele leven en werd gediagnosticeerd toen ik 11 jaar oud was. Ik werd gediagnosticeerd met POTS toen ik 19 jaar oud was, ik ben 21 nu.
Al jaren wilde ik mijn eigen kaart project te beginnen, maar ik wist niet hoe te beginnen enz. Vorig jaar heb ik een Instagram-account gemaakt en kwam ik erachter dat er andere mensen met chronische aandoeningen die hun eigen projecten om anderen te steunen en dat is toen ik besefte dat zou ik in ieder geval proberen.
Dus ik een bericht op Instagram de vraag of iedereen die geïnteresseerd is in het ontvangen van een gepersonaliseerde kaart was. Ik heb zo veel verzoeken in zo'n korte tijd, dus maakte ik een andere account alleen voor mijn project en het is sindsdien steeds groter! Ik heb altijd al om te helpen en te ondersteunen anderen. En ik kan dit werk doen vanuit mijn eigen bed, dus het werkt heel goed voor mij persoonlijk ook. Het maken van anderen lachen, makes me smile! Ik weet uit eigen ervaring dat het niet altijd gemakkelijk is om te leven met chronische ziekten, dus ik wilde de strijd voor anderen een beetje makkelijker te maken door hen te ondersteunen en stuur ze sommige blij mail hen aan te moedigen om te blijven vechten. Ik wil ook hen minder alleen voelen.
Ik begon Gelukkig Mail for Fighters op 29 juni 2017 Dus ik heb dit al bijna een jaar en ik hoop dat dit project voor de komende jaren voort te zetten!
Nadèche op familie en het leven .....
Ik ben de enige in mijn familie die heeft deze ziekten. Ik ben heel dicht bij mijn familie en ze steunen me altijd en me te helpen en ik ben erg dankbaar voor! Ik ben ook erg dankbaar dat mijn ouders en zus me helpen met mijn project. Schrijven is heel moeilijk voor mij dus mijn zus schrijft de adressen op de enveloppen en mijn moeder brengt de kaarten naar het postkantoor omdat mijn chronische vermoeidheid maakt het moeilijk om naar het postkantoor etc. Ik werd gediagnosticeerd toen ik 11 was en ik kreeg hulp van een medisch psycholoog. Ze hielp me zo veel en ik was zo dankbaar! Dat is toen ik me realiseerde dat dat is wat ik wil doen in het leven: het helpen van anderen. Het is mijn droom sinds om een medisch psycholoog en ik studeer psychologie nu. Hopelijk kan ik anderen helpen omgaan met hun ziekte en laten zien dat het leven nog steeds mooi en je kunt nog steeds dingen te bereiken en volg je dromen.

Editor's note:  Below is a story submitted by a member for our site.  If you would like to share your story of the caregiving experience, please email webmaster@dinet.org
Rose's Story
I have been a caregiver and I have had caregiving for myself.  The experience from both sides has required effective communication. 
When I was younger, my mom developed crippling Rheumatoid Arthritis and terminal lung cancer.  I was the closest to my mom both emotionally and physically so it was a natural fit for my role as caregiver to grow with her illness and her need for help.  My mother was a fiercely proud and independent woman.  She was ahead of her time when it came to teaching herself how to use power tools and to build and fix things around our house.  Growing up in the 60's, women her age still wore dresses in public, never pants, and men still took care of the "heavy" work.  My mother wore her dresses alright, but I remember her doing that while she swung a sledgehammer and took down a wall in an upstair's bedroom.  So when she started to lose the use of her hands and have trouble walking, she was angry.  She skipped all the other parts of adjusting to chronic illness and stuck herself on the anger step and wouldn't let go.  Her independence, pride and now anger, made her a very difficult patient to care for.  She was angry at herself when she needed help and angry with me for offering it.  My patience and empathy were tried on a daily basis. I'm not proud looking back on this, but I have to admit that there were times when I would yell at her for being so ungrateful and even threaten her from time to time that I would leave if she really didn't want my help.  I was hurt that no matter what I did, she seemed not to like it.  I'd work all day to cook a meal I knew she loved and she would refuse to eat more than a bite when suppertime came.  I started to really resent her attitude, the amount of work I had to do, and above all, the terrible treatment I felt she was giving me without any good reason.  
After a particularly bad day together, my mom's friend stopped by to see her and could see that I was on the edge of tears.  I explained to her what was going on and what I was feeling.  After about 15 minutes of listening to me complain, she spoke up.  She asked why I was doing this and I said: "she's my mom".  She said "so?  You do have a sister?  She has sisters herself?  There are options.  So, why are YOU doing this?"  I said "I love her.  She's my best friend and I want her to feel good. I want our relationship to be like it was"  She said "So does she but that's impossible isn't it?  She's not the same and can't be to you what she was before.  She needs you to help her find her way to live in this body - the one she has now.  You keep trying to "help her" by trying to find ways for her to do what she did before.  Maybe if you tried to help her find ways to do new things that she CAN do, she would be happier.  She would have some independence again."  I was stunned because I had no idea I was doing that until she said it to me.
From that day until the day my mom died, we did things differently.  We adjusted as we needed to and realigned activities as we went.  Instead of my spending the day cooking her favorite meal and placing it in front of her.  We cooked together. I handled the knives or the things that required dexterity that she didn't have, but I gave the other things that she could still do.  I bought her a high stool so she could reach the sink again comfortably.  My mom's other passion was gardening.  So instead of doing the gardens for her.  I started bringing her outside and getting her comfortable at the potting bench.  She did all the potting.  She prepped all the bulbs.  She was happy again because she felt useful, she had pride in her work and she had independence.  We went from my caring for her to our caring for each other again. 
When I became ill 25 years later and required caregivers of my own on and off.  I sat my husband and my daughter down and told them this story.  We are able to skip the angry days (mostly) and bad temperament  They are able to help me in the ways I really needed help.  And we are able to care for each other the way a family should.
I hope my story can help patients find the ways to communicate to their caregivers what will help them most and I hope it will help caregivers find the ways to listen and be able to help each patient adjust to their new life.                                           

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.


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.

DINET member name:  Rachel Friemel
Rachel's hometown:  Davenport, IA
Diagnosis:  Dysautonomia
Website:  http://www.rachelfriemel.com and
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.  

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