marys_chronic_illness_group

marys_chronic_illness_group This is for anyone suffering from chronic illness to come together, ask questions, share stories and knowledge for the hope of healing

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12/14/2025

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“This didn’t have to happen.”

For weeks after Gilda Radner died, Gene Wilder couldn’t make sense of it.

“For weeks after Gilda died, I was shouting at the walls. I kept thinking to myself, ‘This doesn’t make sense,’” Wilder wrote.
“The fact is, Gilda didn’t have to die. But I was ignorant, Gilda was ignorant — the doctors were ignorant.”

What followed was not sudden.
It was slow.
Quiet.
Dismissive.

It began on an ordinary Sunday in January 1986.

“For us, it all started on the first Sunday in January 1986,” Wilder recalled.
“We were driving to play tennis in Los Angeles at a friend’s house. Gilda began to feel what she described as a fog rolling in. She said, ‘I can’t keep my eyes open. I think I’m going to fall asleep.’ She lay back and looked like she had taken a sleeping pill.”

Doctors were consulted. Tests were run. Explanations were offered — none of them right.

Gilda was initially diagnosed with Epstein-Barr and told to rest. But the symptoms didn’t stop. They multiplied: severe bloating, stomach cramps, shooting pain down her legs, and exhaustion so deep it altered her daily life.

Still, she wasn’t taken seriously.

Doctors told her nothing was wrong.
Blamed ovulation.
Suggested stress.
Called her “high-strung.”
Advised her to relax.

Ten months passed.

Then — finally — the truth.

Just 36 hours after her diagnosis, doctors operated and removed a grapefruit-sized tumor. The cancer was already Stage IV ovarian cancer.

Chemotherapy followed. Her hair fell out. Her body weakened. And still, Wilder believed she would survive.

Later came the realization that never leaves.

“She could be alive today if I knew then what I know now,” Wilder wrote.
“Gilda might have been caught at a less-advanced stage if two things had been done: if she had been given a CA-125 blood test as soon as she described her symptoms to the doctors instead of 10 months later, and if the doctors had known the significance of asking her about her family’s history of ovarian cancer. But they didn’t.”

The cost of that ignorance was devastating.

“So Gilda went through the tortures of the damned,” Wilder wrote,
“and at the end, I felt robbed.”

Gilda Radner died on May 20, 1989. She was 42 years old.

The woman who taught America how to laugh at vulnerability spent her final years being told her pain wasn’t real.

This isn’t just a tragedy.
It’s a warning.

Listen.
Believe women.
Ask better questions.
Act sooner.

12/12/2025

December 12, 2025
This morning I had surgery on my leg for basal cell carcinoma. This afternoon I went to an eye doctor appointment to see if the regime of 8 weeks, drops every 2 hours, 6 times a day, had improved the growth of nerves in my eyes. Sadly, my doctor informed me that I was the only patient she had that did not have a significant positive result. She is going to contact the representative to see if I can try another 8 weeks of treatment.
Years ago when first diagnosed with serious autoimmune diseases, they were not aware that the first place to be impacted is the brain. Now they know that all the organs have a high degree of autoimmune impairment. When my pulmonologist could not find the reason for my breathing issues, he referred me to a neurologist. The amount of brain impairment he found lead me to create a written DNR. Unfortunately, when I went into Complete Heart Block, I was implanted with a pacemaker/defibrillator against my written directive. Since then, they are finally starting to make strides into finding cures. However, in the meantime my body continues its relentless attack. Since my initial diagnosis, impairment to brain, eyes, heart, lungs, vascular system, spine and joint deterioration, kidneys, neuropathy, autonomic and central nervous system, and more, my body is killing itself from the inside out. Hospital visits have triggered PTSD. The thing that is sometimes the most difficult part, is trying to explain, despite my outward appearance, I am very physically challenged. Most people do not notice any disability by looking at me. Since I rarely leave my home, when I do leave for a doctor appointment, I see the outing as something very special to prepare for. I paint my nails, fix my hair, apply makeup and dress with the greatest of care. I am trying to put my best foot forward because that is the only thing I have control of.
To the thousands of people who struggle each and everyday with the exhaustion, pain, heart disease, vasculitis, eyes, ears and mouth problems, neuropathy along with balance issues, breathing issues and more, I want you to know, I see you, I feel you and I support you, each and everyday.
I made my YouTube channel under Mary Dacey. The Autoimmune Conundrum and Chronic Illness, What you Need To Know. They were created because I saw everyone looking for answers and as an empath, I wanted to help everyone.
To the unseen, unheard autoimmune warriors, I commend you each and everyday.

https://lupus.net/living/health-disparities?utm_confid=3d684951a2357aae33a451ec6460c73881a5acb0d929a9813ef2230648f855c9&...
11/04/2025

https://lupus.net/living/health-disparities?utm_confid=3d684951a2357aae33a451ec6460c73881a5acb0d929a9813ef2230648f855c9&utm_term=Article_1_Button&utm_source=ActiveCampaign&utm_medium=email&utm_content=That%20feeling%20after%20you%20leave%20the%20doctor%20s%20office&utm_campaign=Lupus%20net-Newsletter-11%2F04%2F2025&vgo_ee=o%2FbYmhHPrrzsPntbRQM7XxGQA0oB%2BEp5pIkX%2BKyxlsOa9A%3D%3D%3A%2FJvzRMs6PB96yY30MSNC2Tdfd6MawGY6

Implicit bias and lupus health disparities are a barrier to care for so many people living with this chronic illness. One lupus advocate shares her story.

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