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Greetings!
Depending on your part of the world, you may be desperately trying to stay cool or bundling up against the cold. But no matter what part of the globe you call home, we all have one thing in common, we want to feel well. We want to enjoy the ease that the well-world feels when they wake up in the morning, when they make plans with their family, when they want to walk their dog. Simple things that can feel anything but simple if you live with Dysautonomia or love someone who does. This issue explores some of what we struggle with and how to try and make it all a little easier. We are also hoping you will participate in our survey and help us learn more about who you are. We hope hearing from voices like your own helps you to remember that you're not alone and what you feel is not uncommon....to us.
----your friends at DINET
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The Dreaded Question: "So, what do you do?"
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Recently, I was having dinner at a friend’s house with a large group of people, many of whom I didn’t know. Halfway through the meal, one of the new people turned to me and asked the dreaded question.
“So, what do you do?”
Stay calm…. after all it’s a perfectly normal question. They don’t know you’re sick and there’s no shame in being sick. You have nothing to prove.
Keep reading
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Diagnosed at 59: I am an Outlier
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".....I had never heard of POTS; I had never heard of dysautonomia. But as I began reading and learning about it, I often saw the phrase
‘of child bearing age’ in vetted medical descriptions. But this wasn’t me. I’m going to be 60 soon and it’s been well over a decade since my last menstrual cycle. I went looking for answers but came away only with more questions. "
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The Challenge of Working
by Ellen Driscoll
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For most people working is a necessity, a passion or a combination of both. For a chronically ill person it can also be a burden. As an illness progresses, continuing to work may require making very difficult choices.
Read more
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Drowning in the Wake
by Rachel Cox
I hear footfalls, voices. Light shifts the shadows on my eyelids. But I cannot move. I am suspended, somewhere between asleep and awake. Is it night? No, I can feel the warmth of the sun, a band of warmth pinning my legs to the bed. It slides through the window, deceptively light. How does it imprison me here, a concrete statue, prone?
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Meet the Member:
Trudi 's Story
by Chelsea Goldstein
Trudi was diagnosed with POTS a few months ago, though she will be turning sixty this year. Some of her physicians were compassionate during her two-year diagnostic process, while others showed lack of understanding, dismissal and even distaste. All of us have similar stories of doctors refusing to believe our state of illness, though Trudi’s experience seemed to be exaggerated by her age, which makes her an atypical patient.
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How to Beat the Heat
by Amy Keys
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If you have dysautonomia, you already know that your autonomic nervous system is faulty. And of all the systems controlled by our autonomic nervous system, regulating body temperature can be the "big" one during the summer.
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Goodbye old friends, welcome new ones
As people who live with, or have loved ones living with, Dysautonomia, we know it is frequently a roller coaster ride of a life. No one knows that better perhaps, than DINET's founder and VP, Michelle Sawicki. Michelle founded DINET in 2003 and has helped thousands of people become educated, empowered and gain support through her work as President and VP. Michelle's story has a happy turn as she leaves us healthier than when she founded us. We are forever grateful and are always in your debt. Thank you from the bottom of our Tachycardia hearts!
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Meet Lisa Burgess
DINET's Volunteer Coordinator
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Whether you have a few hours to give each month or want to pour yourself into a project, Lisa will find the best match possible for you and DINET. There is amazing healing that can come from helping others. Contact Lisa and let her know your interests.
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Medical Questions & Answers
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Question:
"...POTS...is it one of those things that can happen at night, too? I find myself sleeping and then out of nowhere my heart will pound up to 200 BPM ...."
Question:
"How do you decide which type of compression stockings are best...."
Question:
"I am newly diagnosed with POTS (unknown cause). I become SOB very easy especially in the heat. Is there anything that can help with this? ..."
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Thank you for being a part of the DINET community. We have more support, power and knowledge when we stand (or sit) together.
Wishes for good health for all,
Dysautonomia Information Network - DINET
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PO Box 2642, Buffalo, NY 14240
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