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edriscoll

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  1. After spending most of my life challenging myself with physically demanding activities - I became attached to a cane 15 years ago after back surgery. Following surgery, I spent months believing I would fully recover. Then during a follow-up visit, the doctor cleared his throat, multiple times, and said, "You mean no one's told you?" I won't bore myself or you by repeating all the details of the rest of that conversation, except to say - no, no one had told me. So, fifteen years have passed. After much urging by my husband to get something more attractive, in year seven, I finally replaced the metal hospital cane. The old cane was part of the web of denial I had spun around myself. To replace the "temporary" hospital cane with a more permanent one meant a permanent condition. You get the gist. Anyway, I have moved on and mostly adjusted. I say "mostly" because after the original adjustment to being disabled from my back, I had the additional job of adjusting to life after dysautonomia - a little something I picked up after my second back surgery in year nine. Still, I have enjoyed myself during the past fifteen years and I have refocused on the things that I can still do instead of the things I will never do again. I keep a quote by Stephen Hawking in a frame in my home. He said - “My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well and don’t regret the things it interferes with. Don’t be disabled in spirit as well as physically.” I take this advice very seriously. But when I think about adjusting, there is one thing that I will never manage to accept - how a portion of the world has adjusted (or not) to me. A while ago, I was having lunch with my friend in a local restaurant. We were having a great time catching up and having "girl time." In the midst of our fun, an older man (a stranger) approached our table and just stared. When I asked him what he wanted, he said, “What's with the cane? Did you fall or something?" When I didn’t answer right away, he went on to say, “Oh, I just ask because you look too young for a cane and I thought you might need some help." Keep in mind, I am 48 years old, so “too young for a cane” is lost on me. And beyond that, I was eating lunch at the time - not trying to run out of a burning building! So being in need of help at that moment was lost on me also. I must have looked less than appreciative, because, after a few vague offers to help, he then said in a scolding tone, “I am trying to be sympathetic," and went off in a huff. My friend was horrified and felt my embarrassment as people at nearby tables stared. Did I mention how loudly he offered his help? We enjoyed the rest of our lunch entertaining ourselves with comebacks for next time. Feel free to come up with your own, but, here were our favorites: 1. Oh, this? I carry it for protection. 2. Oh, I hurt myself during extremely athletic sex - thanks for asking. 3. Don't tell anybody but I just carry it to get one of those pretty blue handicap placards for my car. I wish I could tell you that this was an isolated encounter with one rude man, but it's not. It has happened enough times that I have lost count - it happens in supermarkets, at meetings, airports - in fact, anywhere. And when I do not give details - frequently, the person asking refuses to let it go. They may turn it around to indicate that they only ask because they want to help or offer sympathy. They imply that I am rude not to thank them for their concern. I am perplexed by this. Why would people think that asking intrusive questions is allowable when related to an assistive device? Would that same man have thought it acceptable to ask about other things he notices looking at a stranger? Would it be okay, to walk up to a bald man and say "So, why are you bald? Was your father bald too?" Would it be acceptable to walk up to an older person eating dessert and say “Too much sugar can lead to Type II Diabetes, especially in older people, did you know that?” Of course not. Most reasonable people would know that questions like that would be considered very rude and embarrassing in some instances. So, the difference seems to be related to the device. Perhaps these people think they are asking about the device, not the person, so it's allowable. They fail to see that the device is a part of the person’s health record, not to be shared with strangers. Also, the device, whatever it is, is a part of the person’s permanent “look.” All the time - everywhere. Drawing attention to the device as a curiosity is intrusive. It may be embarrassing and it may exacerbate any feelings of self-consciousness that the person may already have. That day, in that restaurant, I'm sure that there were other people facing chronic conditions or illnesses. They enjoyed their lunches despite more hidden conditions like diabetes, HIV, high blood pressure, colitis, heart conditions, etc. Just because a person has a wooden appendage or some other device, it does not make it acceptable to ask personal questions that are clearly tied to their health. On behalf of all of us who go through life with canes, wheelchairs, oxygen, leg braces, etc., I offer a reflection. If people would examine why they are asking, before they ask, it might save everyone some discomfort. Curiosity is not a reason to intrude even in the guise of helping. When I arrived home that night, my husband heard my story and pointed out that the man was trying to "reach out" and "trying to be nice," - he believed the man just "felt sorry" for me. That may be true, maybe that was his intent. But the real truth is, all he accomplished was to interrupt my lunch and make me feel bad. I appreciate immensely when someone sees me struggling to balance my cane while carrying groceries and trying to open a door. The good Samaritan who runs up and grabs the door for me is a hero. And the person who offers me a seat at the DMV when the line is long is a saint. Those are the things that folks can do when coming across a person who wears their medical condition on their sleeve. Return to newsletter
  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.
  3. 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.
  4. 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
  5. 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
  6. Become a DINET Featured Member. We are again taking applications for the Featured Member program. The program is open to DINET members who are patients or caregivers living with dysautonomia. The only criteria are that you are willing to share something about yourself & your life that brings you joy. It can be something that helps you cope with your illness or ways you have adapted to be able to continue a hobby or interest or simply something you enjoy doing. This can be something you create for yourself or others, it can be gardening, creating artworks, crafts, playing with your dog, reading a good book, enjoying your family, anything. This project was started after hearing from so many members and Facebook followers, about the very real depression and loss of identity that can happen when you live with chronic illness, especially illness that can be as life-changing and debilitating as dysautonomia can be. We heard from many people, all ages, many disabled, many struggling to continue work - but many people working to find a way to adapt and to remind themselves that they are more than this disorder or illness. Most importantly, to find joy in their world, wherever it may be found. If you would like to share your story, we would love to hear from you. You will be featured on our homepage, our facebook page and included in a post sent to friends and followers of our page. If you would like to apply, contact webmaster@dinet.org We will send you a few questions to get you started. Members are featured in date order from when they complete the application process. If you have further questions about the project, please contact the webmaster address.
  7. 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.
  8. 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.
  9. 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?
  10. 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?
  11. 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.
  12. 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.
  13. How about in the middle of an executive management meeting with my boss and the entire management staff of the company seated and staring at me as I slid to the floor. By the way, I was in the middle of a presentation I had worked on for months! It started with a full temperature spike, so profuse sweating, my heart pounding so hard that I couldn't hear anything. But I could tell by the expression on their faces that I must have looked pretty rough. I remember thinking "please no! Not now! Not now!" Yeah.... that didn't work. I slid to my knees (I was in a dress and terrified of where it would end up if I fell) before I became completely incapacitated. I came to with all of them still seated and staring at me. I sat up. My boss offered to help me back to my desk. I refused, wiped the sweat off my face and proceeded to do the worst presentation of my entire working life because of the pounding headache, horrible brain fog and shaking that I couldn't stop. My stubborn need to prove to myself that nothing had changed, led me to do a lot of regrettable things back then. But acceptance was hard for me. It was most definitely the worst episode that I can remember clearly.
  14. 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.
  15. 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.
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. 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!
  21. 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!
  22. 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.
  23. 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.
  24. 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.
  25. 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.
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