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!
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
@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?
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.
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.
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.
How is Flo? This video touched me greatly. I have SLE and like Lisa I have PMS flares which are difficult for myself and for my family. Racing thoughts and and insomnia have been a problem as well as difficulty walking. My thoughts are with Flo and hubby, please keep us posted on how both of you are doing.
Thank you, thank you, thank you. I am just going through the cycle of seeing a neurologist. CNS involvement in my condition is rapidly getting worse. I am scheduled to get an MRI at some point (hopefully this month).This is pure hell. I have two children and I am not getting better and it seems like the doctors are just going through the motions. I have considered checking myself into a mental institution plenty of times. May God bless you and give you peace. I feel you about the assisted living
Thank you so much for posting this. I too have CNS Lupus and have travelled down this same road. As a caregiver you are an awesome man as it takes a strong soul to understand and see through the anger. I so hope that one day medical professionals & researchers will finally stop looking at us and saying "they look fine", here are more drugs that won't work. Thank you again! You and your wife are a true inspiration to many.
I know this video was made over a year ago. My heart goes out to your family. My husband is also my caretaker. I do not have CNS and based upon the video what little I have read about it does this form of the disease no justice. I do have SLE and we are fighting this battle. We are doing our best to spread awareness and to be advocates for lupus. God please help us.
Hi...I have this and act just like her..however, mine last 2 weeks out of month...all my life I thought it was pms... I did not know it was milder flare ups...dear sir...Take my word, she is suffering! I am only 1/10 as bad and I dont think I could handle much more.... Continued...ran out text
Hi My name is Shelly I also have lupus mine is not the same type as hers but I under stant her anger. Please let us know how she is the video shows how lupus does people different I also under stand how hard it must be on you God bless you . You must really love her you and her will be in my prayers .thank you for showing your story keep up the video and maybe if you show her others it might make her not feel so alone.
Wow! Gary, I don't know what to say...I'm so glad you shared this with me. It's unfortunate that people continue to be ignorant about the effects of Lupus and make erroneous judgements based on our appearance because we don't look sick. Thanks again for sharing.
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!
aaliciagratton 1 week ago
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
msdelle22 1 month ago
@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?
Lupusology 3 weeks ago in playlist My Top Videos
@Lupusology i hope so how is ur wife doing now
msdelle22 3 weeks ago
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.
TsingTao7 1 month ago
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.
vickeywiles 5 months ago
My heart goes out to you both. Keep fighting. Thank you for spreading awareness.
rainbowbrite24 5 months ago
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.
lastnerveending 10 months ago
Thanks to Rainbow Hospice & the McClowry's for your unending concern and help
GaryHultman 1 year ago
Thanks to Rainbow Hospice & the McClowry's for your unending concern and help.
GaryHultman 1 year ago
How is Flo? This video touched me greatly. I have SLE and like Lisa I have PMS flares which are difficult for myself and for my family. Racing thoughts and and insomnia have been a problem as well as difficulty walking. My thoughts are with Flo and hubby, please keep us posted on how both of you are doing.
erski14 1 year ago
Thank you, thank you, thank you. I am just going through the cycle of seeing a neurologist. CNS involvement in my condition is rapidly getting worse. I am scheduled to get an MRI at some point (hopefully this month).This is pure hell. I have two children and I am not getting better and it seems like the doctors are just going through the motions. I have considered checking myself into a mental institution plenty of times. May God bless you and give you peace. I feel you about the assisted living
MRZQUEENDIVA 1 year ago
Thank you so much for posting this. I too have CNS Lupus and have travelled down this same road. As a caregiver you are an awesome man as it takes a strong soul to understand and see through the anger. I so hope that one day medical professionals & researchers will finally stop looking at us and saying "they look fine", here are more drugs that won't work. Thank you again! You and your wife are a true inspiration to many.
22veetee 1 year ago
I know this video was made over a year ago. My heart goes out to your family. My husband is also my caretaker. I do not have CNS and based upon the video what little I have read about it does this form of the disease no justice. I do have SLE and we are fighting this battle. We are doing our best to spread awareness and to be advocates for lupus. God please help us.
treappling1 1 year ago
They took away part of my comment!
rusticranchfarms 2 years ago
Sometimes glitches happen on here.
Lupusology 2 years ago
...I feel like God brought him to me...because he knew that he would be the only one to handle me and take care of me when I flare up
Lisa
rusticranchfarms 2 years ago
Hi...I have this and act just like her..however, mine last 2 weeks out of month...all my life I thought it was pms... I did not know it was milder flare ups...dear sir...Take my word, she is suffering! I am only 1/10 as bad and I dont think I could handle much more.... Continued...ran out text
rusticranchfarms 2 years ago
Hi My name is Shelly I also have lupus mine is not the same type as hers but I under stant her anger. Please let us know how she is the video shows how lupus does people different I also under stand how hard it must be on you God bless you . You must really love her you and her will be in my prayers .thank you for showing your story keep up the video and maybe if you show her others it might make her not feel so alone.
fuquashelly 2 years ago
Wow! Gary, I don't know what to say...I'm so glad you shared this with me. It's unfortunate that people continue to be ignorant about the effects of Lupus and make erroneous judgements based on our appearance because we don't look sick. Thanks again for sharing.
theleepchatchannel 2 years ago