The Patient is In

When Heather Foisy was diagnosed with an autoimmune illness called Sjogren's Syndrome, she felt her world was falling apart. The disease had already been making her nauseous at every meal, and had caused such bad abdominal pain that even walking down the hallway could bring her to tears. But now, with the diagnosis, depression and loneliness set in. At the same time, however, so did a measure of denial. Heather, intent on distracting herself, continued to go out frequently with her hard-partying friends. That is, of course, until her body crashed and she realized she had to retool her life, all the way down to the way she socialized and made friends. In this episode Heather describes what she learned in forging a supportive network of friends and family in the wake of chronic illness.
Related Links:

Heather Foisy's advocacy blog: Phoenix Soul Warrior

Heather on TikTok: @PhoenixSoulWarrior

Free Prepping For Your Rheumatologist Appointment Worksheet: https://www.phoenixsoulwarrior.com/resources-1

Facebook Online Support Group

Sjogren's Foundation

Butyoudontlooksick.com: The Spoon Theory

The New York Times: Five Things I wish I'd known before my Chronic Illness

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StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.

Learn more about StuffThatWorks.

We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness.

• Contribute to the Sjogren Community
• Find your condition community.

Music for The Patient Is In courtesy of Blue Dot Sessions.

More from Maya Wolff:

• Maya's Instagram account where she has been documenting her struggle with Long Haul COVID:
• Maya's website

More on Long Haul COVID-19:

• Body Politic's COVID-19 Support Group

Articles:

• The Atlantic: Long-Haulers Are Redefining COVID-19
• ABC News: Long-haul COVID-19 patients will need special treatment and extra support, according to new guide for GPs
• Healthline: From Back Pain to Coughing, Life with Long-Haul COVID-19

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StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.

Learn more about StuffThatWorks.

We're using crowdsourcing to gather data and learn how COVID-19 affects those of us with preexisting conditions.
By sharing information about the impact of the coronavirus pandemic on your daily life, you can play a major role in helping advance research.
Contribute to the Research
(Everyone can contribute, even if you do not have the virus.)

Music for The Patient Is In courtesy of Blue Dot Sessions.

Lynda Pickett and Laura Murphy live on opposite sides of the globe and have never met in person, but they consider each other the best of friends. They both suffer from Premenstrual Dysphoric Disorder, or PMDD, a condition that at times has upended both of their lives. Their connection has been a lifeline, getting one another through their darkest moments with PMDD, including, at one point, Lynda’s suicidal thoughts.

PMDD is a hormone-based mood disorder, which can arise during the premenstrual phase of a woman’s monthly cycle. It can prompt extreme rage, anxiety, mood swings, and at its worst - suicide. About 30% of women with PMDD try to take their own lives. This is the story of Lynda and Laura’s PMDD journey and how their friendship and the peer support and treatment information they exchange, has made all the difference.

For information:

See Vicious Cycle, the patient-led PMDD group co-founded by Laura Murphy. Lynda Pickett runs their Australian branch.

More on the Topic

• Q and A with Laura
• Q and A with Lynda

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StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.

Learn more about StuffThatWorks.

We're using crowdsourcing to gather data and learn more about PMDD and treatment effectiveness.
Contribute to the PMDD Research

Music for The Patient Is In courtesy of Blue Dot Sessions.

Shortly before the coronavirus pandemic swept the United States, Dr. Jo Shapiro was training fellow physicians at an Air Force base in Dayton, Ohio.

After returning home to Boston, Jo, a head and neck surgeon and a professor at Harvard Medical School, started to feel congested. But it was no ordinary congestion. She describes it as the weirdest upper respiratory symptoms she’d ever experienced.

As a physician, she found herself fascinated by—and even studying—how her body was experiencing the disease. As a patient, she grew sicker and sicker over the three weeks she was ill. And then there was the day she thought she might have to check into the hospital. She knew this could signal a downturn from which she might never recover.

In this week's episode of The Patient is In, Dr. Shapiro shares what she learned about COVID-19 now that she’s on the other side of the disease.

More about Dr. Jo Shapiro

• Professional Website
• Twitter: JoShapiro3

More on the Topic

• Hear Dr. Jo Shapiro speak about Reducing Burnout and Increasing Well-Being among Clinicians: Watch Video
• Read about COVID-19’s Emotional Toll on doctors: Read Article

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StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.

Learn more about StuffThatWorks.

We're using crowdsourcing to gather data and learn how COVID-19 affects those of us with preexisting conditions.
By sharing information about the impact of the coronavirus pandemic on your daily life, you can play a major role in helping advance research.
Contribute to the Research.
(Everyone can contribute, even if you do not have the virus.)

Music for The Patient Is In courtesy of Blue Dot Sessions.

More from Denise Fixsen

"I have dedicated my life to HS and to helping others who suffer. I have been an HS advocate for 29 years now and for 28 of those years an HS patient advocate for others. I have been to doctors appointments, surgeries, and ER visits with them and helped them navigate insurance issues, get proper treatments etc. I have met, helped and worked with hundreds of HS sufferers. Not only has it been an honor working with so many fabulous warriors, but this entire journey has taught me SO much about this illness above and beyond research.

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I have worked with and continue to work with researchers, scientists, HS specialists, and other advocates. I have attended several HS medical conferences and seminars. I have enjoyed putting together several successful face-to-face support groups around the United States and have and still do spend countless hours researching up-to-date published medical research studies regarding hidradenitis suppurativa and comorbidities. HS facts and factual awareness is VERY important to me.

Due to other illnesses, part of my HS advocate journey came to a halt, at least the physical aspect of it. I continue to be an HS advocate and I do what I can to help other sufferers; it’s now just done via email, online, video, phone, and is one of the main reasons why I created the HS support group Hidradenitis Suppurativa Unique Fun Facts and the organization, HS Connect.

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I have suffered with HS for 42 years now; it started when I was 8 years old. I've been dealing with severe stage 3 since age 25. For about 21 years of my life, 87% of my body has been touched by hidradenitis. I have been through everything imaginable with this, including all the mistakes that go along with this illness. I have also had several invasive wide excision surgeries, which I am still undergoing to date.

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I am an open book when it comes to my HS and I understand your pain as well as the mental and emotional toll this can take on you. Please feel free to ask me any questions about anything HS related or my personal HS case."

Related Articles and Videos

• The New York Times: Patient Advocates Help Navigate Healthcare
• HBO: Patient Advocates Can Help Save You Money and Your Life
• HS Connect Awareness Video: "We are HS Warriors"!

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StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.

Learn more about StuffThatWorks.

We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness.

• Contribute to the HS Community on StuffThatWorks

Music for The Patient Is In courtesy of Blue Dot Sessions.