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Missy M

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About Missy M

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  1. I have chronic problems with edema from my Dysautonomia. My doctor prescribes a diuretic which helps (it does not add to my blood pressure instability, which they always worry about with POTS). In addition, water exercise helps my edema. This makes sense. I've read that water exercise is good for the limbic system. We figure (without knowing) that the edema may just be part of my chronic issue with electrolyte imbalances. We also figure the chronic electrolyte imbalances are most likely caused by the autonomic nervous system not regulating my electrolytes properly. Hope tha
  2. Editor's Note: Melissa Milton is a DINET volunteer who lends her hand to help wherever it is needed, most often on the forum. Melissa has also written articles for this newsletter, sharing her artistic view of the world with all of us. Melissa came to DINET as part of our Featured Members program and more of her art and her story can be seen on her featured page. Melissa Milton feels honored to be among the 2018 Rare Artist Contest Awardees. The annual Rare Artist Contest is sponsored by the EveryLife Foundation. The purpose of the contest is to raise awareness for rare diseases, as t
  3. Age specific tools for managing chronic illness I’m no expert in the field of chronic illness. Nor am I any type of medical professional. However, I AM an older adult with eighteen years of experience in dealing firsthand with a chronic illness (dysautonomia). I’ve been asked to share my experiences, observations, and opinions. I’m happy to do so in case any of it may help someone else. In my opinion, when it comes to having a chronic illness it matters where you are located in your Life Cycle. By that, I mean that your current place in your “Life Timeline” (childhood, young adulthoo
  4. I agree. Sometimes simple is best.
  5. I’ve had dysautonomia for 18 years. Although in my case it has very gradually progressed over the years, and at this point does quite seriously impact my mobility, I have to say that I have no immediate plans to die. 😉
  6. Does his heart rate typically go up when his bp drops? I ask because my daughter recently got an Apple watch. She was able to set it to notify her when her heart rate drops too low or goes too high. So if your husband’s heart rate typically goes up when his bp drops down, he might consider an Apple Watch and set it to alert him when his heart rate hits a certain point. That might clue him in to take his bp. It’s just a thought.
  7. My bp often drops too low or soars too high after eating. I get resultant changes in my heart rate, etc. I’ve found it very helpful to eat smaller quantities of food. (I eat more often as a result.) Hope that helps.
  8. Mine has been soaring lately to very high ranges. The worst so far was 226/190. My only symptoms are typically a sudden headache and dizziness. In fact, the sudden headache is what clues me in to take my bp.
  9. 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 did
  10. 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 did
  11. Born in the 1860's and married at 16, my great grandmother had a challenging rural life mothering a dozen children. Yet by all accounts, despite many hardships and heartbreaks, she laughed a great deal and lived contentedly into her 90's. What was her secret to happiness? She had a motto that she kept written down and neatly folded inside a mahogany desk drawer. How do I know about her writing down that motto? Teenage me found it many years after her death as I searched for a pen. The folded note lay long forgotten inside the drawer of a desk she had left to one of her daughters. Upon he
  12. When I wore a Holter monitor it picked up enough bradycardia and tachycardia that it led my GP to refer me to an electrophysiology cardiologist. He was the one who recognized my symptoms and diagnosed me properly. He then ran additional tests to confirm my diagnosis. So the holter monitoring was very beneficial for me in that respect. Now that I am diagnosed they do not hook me up to holter monitors anymore. They DO hook me up to do ekgs when they run occasional tests such as treadmill testing.
  13. My docs wrote off my livedo reticularis to either being the result of my inherited autoimmune disease (autoimmunes can be a commonly known cause) or my Ehlers Danlos Syndrome (another commonly known cause). One in three people with dysautonomia also have EDS (Ehlers Danlos Syndrome), so I see EDS and livedo reticularis mentioned fairly often in various dysautonomia forums.
  14. One suggestion could be to keep a blood pressure cuff on your nightstand and take your blood pressure upon awakening (before you sit up or stand up). It’ll show you (and your doctor) what your heart rate and bp are doing. Then after you’ve stood up and walked around a few minutes, take it again (while still standing). Later on, when everything feels “calm” and you don’t feel dizzy or weird or anything take a reading with the blood pressure cuff again. The “before and after” various readings might help you and your doctor figure out whether the tachycardia is in response to your
  15. EDS and Dysautonomia (POTS) run in our family. We do not have an expectation of being “cured”, although every time we master a new assistive tool or strategy to help us adapt to being more fully functional it is a cause for celebration. We also refuse to let it dampen our wacky spirits. 😊😜
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