Meet Flo

Meet Flo she has had Lupus since she was 16 years old, 31 years now. In this video you see the devastating effects of Systemic Lupus Erythematosus, with severe complications from Neuropsychiatric Lupus, which disabled her 11 years ago. She had been in a continuous flare since 1992. During that time she suffered from extreme headache pain. It was after the loss of our 2nd child Elaine at birth when her labs changed from really bad, to outrageously bad, and this is when Lupus attacked her brain. I found her circling our kitchen unable to tell me where she was going or what she was doing. That was the last day of her employment. That was the day I lost my wife. Since then she has survived being in a coma for a week and a 6 month stint in hospice. Then she survived the loss of our 8 year old son to a rare X-chromosome disease called ALD. During the 10 month battle for his life, she pushed herself to be super mom for our son. Today, she lives with, extreme head ache like pain 24/7, no short term memory, no coping skills, inability to control; the speed of her thoughts, when she will fall asleep, when she will wake up, bowel function, most cognitive functions, along with, loss of ability to balance, dislocated bones in both of her feet due to loss of connective tissue from 31 years of lupus attacks and prolonged use of prednisone, Raynaud's phenomenon, Sjogren's syndrome. I could go on.

Category:

People & Blogs

Tags:

• Neuropsychiatric Lupus
• Neuropsychiatric
• CNS Lupus
• Cerebritis
• Lupus Cerebritis
• Lupus brain
• Lupus death

[msdelle22]

she is telling the stone true i have lupus i was is a damn coma when the found out know im on ssdi setting here pick cotton off the wall so what do we do now im only 38 yrs old i help my mother who bet cancer twice but when im down who helps me??? me

[Lupusology]

@msdelle22 My goal is to eventually have a home for patients, like yourself and my wife. A dramatic change has to happen in this country when it comes to Lupoids who need to be cared for in a safe, understanding, and most importantly, with PATIENT LOVING care providers. I hope to build that house. Would you consider such a dream?

[rusticranchfarms]

They took away part of my comment!

[Lupusology]

Sometimes glitches happen on here.

[aaliciagratton]

My dad has been diagnosed the exact same thing 5 years ago by my mother... she had done her reasearch and had found out about it suggesting it to the doctor which they had mis diagnosed him with Bi-Polar disorder he is in the phyche ward now and has been formed A. I hope flo is doing well and I really hope that one day they will find a cure for this Flo, like my father, seems like a smart person and deserves answers!

[msdelle22]

@Lupusology i hope so how is ur wife doing now

[TsingTao7]

I consider Lupus to be an extremely lonely disease. Few understand and most don't even know what it is. That includes caregivers in your situation. Just know your not alone, many of us out here understand the frustration of no help or medicine, pain and fear that go along with the disease.

[vickeywiles]

You and your wife will be in my prayers.  I have SLE, Raynaud's, Sjogrens, RA, autoimmune hepatitis, etc, etc. etc.... The lupus has began to effect my brain, but only nominally. I pray God continue to give you the understanding, support, and strength you need to just make it through each day.

[rainbowbrite24]

My heart goes out to you both. Keep fighting. Thank you for spreading awareness.

[lastnerveending]

I'm sorry buI also have a form of neurological Lupus... and I must say that this woman makes more sense than most people. Bad enough we must suffer physically, but society adds insult to injury by neglecting and kicking those with Lupus while they're down. My favorite quote: "Hard ons" for weeks. It's sad but true. My heart goes out to you, Flo for your suffering and strength.

[GaryHultman]

Thanks to Rainbow Hospice & the McClowry's for your unending concern and help

[GaryHultman]

Thanks to Rainbow Hospice & the McClowry's for your unending concern and help.