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  1. 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: https://www.sonoranartsnetwork.net/jessica-van-woerkom.html 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
  2. 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. Sincerely, Missy Milton 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/
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