Everyone of us has had really bad, symptomatic days where even getting out of bed can be a challenge. There are also the surgeries that always take extra time to heal from because our body does not want to play nice. Being stuck in bed can be boring, lonely and isolating. However, many of us living with Dysautonomia, EDS, Chiari, MCAD, Gastroparesis and all of those other comorbidities that are along for the ride, we have become very adept at making those days easier. This week’s “Weigh in Wednesday with Divas and Dudes” is on “Best Activities to Do While Stuck in Bed”. DSN members really out ..read more

DSN seeks to support creative souls within our community through our monthly Artist Feature. Featured artists can submit images of whatever medium they express themselves through such as photographs, digital art, sketches, paintings, embroidery, and more. Artists then answer interview questions so that the community can get to know them on a more personal level. If you are interested being a featured artist by DSN please submit an image to our website blog submission page. We will contact you to conduct the interview. This month's featured artist is Julie Mielke, a nurse whose preferred art me ..read more

In January of this year, I was asked to start volunteering with the Dysautonomia Support Network (DSN). After training, I became an admin on their most popular Facebook page, "Divas, Dudes and Zebras." It quickly became my responsibility to accept and welcome new members. Around that time, DSN was planning for their annual Neuro-Connect Summit. I was invited to attend, but I was hesitant. First, there was the cost. Then there was “new kid anxiety.” I wouldn't know anyone there, and it terrified me. But Cathy, my team leader, wouldn't take no for an answer. She made sure I knew I was welcome an ..read more

Last year, when it was time for DSN’s Virtual 5k, I was in a good place physically. I was able to do all of my PT exercises every day, and I built up my stamina. I worked up to riding my recumbent bike for 2 hours, walking up and down the stairs 10+ times a day, and taking up to 20,000 steps a day. I was elated. The more I accomplished, the more I pushed myself. I wanted to become stronger than ever. Unfortunately, it was not meant to be. At the very end of November, I was suddenly struck with unbelievable pelvic pain. I’ve had pelvic pain before, and began pelvic PT in September of 2018 to t ..read more

It has been nearly six years since I last blogged about Ehlers-Danlos Syndrome. So much has happened since then! So I thought it was time to reflect on the day-to-day with this genetic disorder. How has EDS affected me? My mornings are full of false starts, but eventually, I drag myself out of bed, remove my C-PAP, and make my way to the couch when my husband goes to work. Every morning, I have a "What's dislocated?" moment, and then I get my first dose of medications in. From there, I have a liquid breakfast, as gastroparesis hates solid foods in the morning. If I'm in physical therapy, at th ..read more

Chronic illnesses have a tendency to create stress and anxiety. Whether the anxiety is new or a result of your illness, you have to find a solution. Maybe you forgot to take your medications, or accidentally took it twice. Perhaps you’re dealing with an unexpected ER visit, surgery, or other medical procedures. Sometimes, finances alone are more than enough to set you off. Life is stressful, and we all experience anxiety. But it is particularly tough on those who already struggle with their health. We are asking our members how they reduce stress and anxiety in the hopes that their ideas migh ..read more

April is Occupational Therapy Appreciation month, so thank you to all of the occupational therapists out there who have made a difference in their patients’ lives. For those who may not know, occupational therapists (OT) help with braces and splints, with executive functioning, and with helping their patients perform tasks without strain or injury. They even help patients regain skills they may have lost due to a stroke, surgery, accident or other event. In short, they help many of us live our best lives by remaining as functional and independent as possible. I never thought that an occupation ..read more

When I first started learning about Ehlers-Danlos Syndrome (EDS), the issue of “tightness” came up. Some of us with EDS feel as though our muscles are tight. Our faulty collagen makes the ligaments and tendons too weak to hold the bones and joints together properly. To compensate, the muscles have to work even harder, which causes the muscles to spasm, which in turn makes them feel tight. To combat the tightness, we use massages, muscle work, and stretching to relieve the pain. This can make the muscles strong enough to hold the joints together so that they don’t have to work so hard. Sometime ..read more

Tips and Encouragement for New or Returning Exercisers of All Health Statuses Note: Everybody who reads this should talk to their medical practitioner before they get started with an exercise routine. This article is written both for people with typical health and those without, but the suggestions are easier to integrate into your life safely if you don’t have as many medical quirks. I mention some chronic conditions and how that can affect the kind of exercises you do, like fibromyalgia, chronic fatigue syndrome (CFS/ME), postural orthostatic tachycardia syndrome (POTS), general hypermobili ..read more

When we call disability accommodations “special needs,” it makes them sound optional, burdensome, not worth the effort, or impossible without special training. Here’s a thought: special needs are actually human needs. Let’s create a norm. Let’s embrace it by exceeding these needs rather than just trying (and sometimes failing) to meet basic accessibility standards. You may be wondering why would someone would pursue higher education if they need extra support and accommodations to get it done. It’s because we have gifts to share. This is an edited and shortened version of a letter that I wrot ..read more