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    • VACCINE RECOMMENDATION:  DINET encourages all its members to receive the vaccinations and boosters for COVID-19, unless specifically advised against it by your medical provider.  To better understand the virus, the vaccine and the effects on people living with dysautonomia, please watch Dr. Svetlana Blitshteyn's video "COVID-19 and Dysautonomia"

Meet the Member: Trudi's Story


Goldstec

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. Our physicians are trained to lo2017Q2_TrudiDavidoff.thumb.jpg.5d9eac2a0ca03275bc2eb806981b1e1b.jpgok for horses, not zebras. While this adage holds true much of the time, Trudi is a reminder that some patients are zebras, who need zebra-specific treatment.

Trudi’s symptoms began with months of gastric distress resulting in a fissure. She was also diagnosed with vertigo multiple times during this period, yet the treatments did not have lasting or curative effect. She knew her condition was serious when she had an automobile accident. While driving in town, she was overwhelmed by the feeling of disassociating from her own body. Her brain knew she needed to turn right, but her nervous system had taken control and continued to veer left. She sideswiped a stopped bus, damaging the side of her vehicle but, thankfully, the accident did not cause any injuries. Over the next 27 months she saw dozens of doctors, including numerous specialists, most of whom had limited knowledge of Dysautonomia. She recounted her myriad of symptoms to all of them—from gastric complications to out-of-body sensations. Many were dismissive, or downright rude. However, one specialist had her do a tilt-table test and, while her results were not overly conclusive, he listened to her entire history. This complete picture of her health enabled him to definitively diagnose her with POTS. These years of appointments exhausted Trudi, and did not result in much physical improvement. However, in her words, she could now “put a name to the beast and learn to tame it.”

As an avid gardener, and a professional seed sower, Trudi understands how to manage and maintain organic beings. Just like plants, her POTS cannot be controlled, but she can guide it and give it ideal conditions. She does this by taking advantage of the resources in her hometown of Long Island—all of her medical appointments are a short drive away, and she can use reliable public transportation if needed. She is learning to utilize technology in order access more local resources. She can no longer work in the garden because it triggers her POTS and IBS, and her online company is too demanding for her newly fogged brain. However, she has maintained her passion for all things plants by managing a Facebook Forum on winter sowing seed germination. She also made the difficult choice to be open with her professional partners about her health, who have rallied behind her to identify projects within the limits of her body. She has temporarily hired help for cleaning and yard work. She knows the expenses of these services are worthwhile because she is freed to spend her limited energy on activities that best support her physical and mental vitality. Through it all, she has learned to find joy in things like physical therapy and preparing quick meals for her family.

Trudi’s battle with Dysautonomia has been just as harrowing as all of ours, however her developed life experience seems to give her a degree of wisdom about her diagnosis. Throughout her interview, even when discussing difficult moments, Trudi was sure to mention the silver lining of POTS. Her family ‘s help makes her that much more appreciative of her husband and son. Even her dogs have learned to assist her (without training) by pushing her toward the bed when they sense she needs rest, and by acting as supports when she wants to stand. She chooses to see POTS as life changing rather than of life limiting. She uses this positive attitude to focus her energies on advocacy and educating physicians who are unaware of Dysautonomia. Perhaps, through Trudi’s efforts, not all doctors will be as quick to dismiss us as all being horses because sometimes we are zebras and we are all learning to have pride in who we are, with or without Dysautonomia.




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