As for my Fear lets just say its not dieing, Its more like Depression becaue it runs in my Family and the thought of being anything but my cheerful, happy optimistic self is scary, I'm afraid that if I get depressed no one will listen to me or care about me anymore.. I'm also afraid of surgery, I know its weird but until I got Lupus I was Healthy and never had to stay in the hospital or get blood drawn and now I have... Surgery has always been my number one fear in life.
I'm new, thanksgiving week will be my 6 month mark of being diagnosed with Lupus. I love just being active, not soo active that I loose weight or put myself in danger but enough that I'm healthy and having fun. I have had the butterfly Rash since I was atleast 9 maybe younger, the only thing I do for it is wear wide brimmed hats and sunscreen when I go outside for more than a couple minutes. Its been a part of me for as long as I can remember so I dont really care, It adds to my Beauty.
Cover up your Lupus scars with Dermaflage- our customers cover their scars everyday and no one knows they are there. You no longer have to just live with them!
hi my name is sadi i have just bean diagnosed with lupus i have bean watching your videos they are good and i have bean having a butterfly rash and swelling in my feet im constontly tired i doent ever fill like im geting any rest. im scared if its going to get wors i also have back proublems so dilling with thas to thanks for all your videos.
I don't get the rash either, but everything else....including losing my kidney. When I was 21 lupus as completely killed my right kidney and it had taken many many hospital stays to keep the other one working properly. You definitely don't want kidney involvement. You're an amazing young lady & I really hope you help tons of people and offer them hope. I know I have found my vehicle to do that. My biggest fear has been not seeing my children grow up. I have already missed a lot of their lives.
You might never get the rash that bad,,,,,you are young you should just stay out of the sun.....nothing more may happen to you...so just do what you do and don't worry because you know that makes things worse.....rashes and kidney problems do not always happen. Good luck
You might never get the rash that bad,,,,,you are young you should just stay out of the sun.....nothing more may happen to you...so just do what you do and don't worry because you know that makes things worse.....rashes and kidney problems do not always happen. Good luck
I was diagnosed with lupus back in 1999,(DLE) I have had no luck with any corticosteroid creams or ointments. I have had a lot of luck with Avon Anew, believe it or not. I had a very thick almost kind of scale on my nose, after using Avon Anew, it is almost gone!
Lupus has taken so much from me.I can no longer: work, take care of myself, stand long, walk far, hike, dance, swim, clean, cross stitch, crochet or any thing I used to do when I was not sick.I've had liver, kidney, gallbladder and cognitive problems.Rashes kind of help my family know how bad I am getting when we are out.I don't want to go blind.I am not afraid to die.I just don't want my family to hurt.
@babble2leeza looks like you have a pretty severe case of lupus and I wish you the best with your struggles. I wish my words could do more. Have you found a good doctor? Cause if not I would keep looking.
I got a spot on my nose when I was 16- Had it checked- they said it was nothing to worry about. Now I'm 35. I just found out 2 years ago that the spot on my nose is lupus. I do have the butterfly rash, across my face & on my ears. It itches, peels and blisters. I mostly worry about what effect Lupus has had on my organs after over 18 years... had a Pet Scan done- Abnormal cells widespread from the base of my neck down to my abdomen. I try to be strong- I just pray... God bless you..
I get this red scaly and itchy rash that comes up on my hands, but on my face it will itch and get red but not scaly. I have never had the butterfly rash but I do look very flushed with dark circles under both eyes.
thank god youtube.i wanted to ask so many questions but i couldn t find anyone.i think we have lupus in the same level.i feel tired i can t sleep at nights becouse of some other neurological problems (restless feet)and when i caught a cold i m in a very bad situation than before the lupus.but my biggest fear is that even though i take my medications it will came back and i will be like me before the treatment.it was painfull body and soul.guys we need good psycology!we are special bec we know.
brain involvement. i have already been thru the kidney involvement, stage 4 and also nueropathy of my feet,the ability to walk .. have had to relearn this in the last 10 months. have had liver involvement,and a splenectomy. i am in fear that brain involvement will be the final stage for me, it just feels this way to me and i have had this disease since 1996 or even earlier. i was misdiagnosed with scleroderma and treated for it for almost 4 years before i was hospitalized and rediagnosed
Yep....God has a plan for you! Maybe it's that people can see Him through you (I do) or maybe He'll just heal you and that will bring many to Christ!
I've had ankylosing spondylitis (autoimmune arthritis) since I was 15, I'm almost 39 and it's been painful and tough. But, there is a reason. I'll find out someday.......in the meantime.....I'll follow Jesus Christ!! AMEN!! :-)
I don't get the butterfly rash either and I have MCTD just like you. I do get flushed in the face when stressed and I get rashes on my thigh, buttocks, arms and hands. My biggest fear is not being here to watch my 16 & 11 yr old daughters grow up. Sam, You are a beautiful strong girl and I don't want you to get discouraged. It saddened me to see how sad you feel and how you are holding back your tears. You are that superstar you want so much to be because you are a Hero to all of us. SMILE! xoxo
I am 19 and I usually get the rashes on my face (the butterfly rash) and my chest and neck turn severely red. It sucks ha. You seem so positive and I admire you for that[[: I love singing and I keep up my spirits and am continuing to sing and compete. What I'm afraid is having my organs start to fail on me and dying so young..
I don't have lupus, but I'm studying for my PTA board exams and your video is informative and inspiring. You've got a great attitude, and with that you'll go far. Keep it up! :)
About the rash, I don't have a typical butterfly rash but I DO have a rash. It is very obvious and it gets more obvious when, as you stated, I'm tired. Some days it's really faded and I get excited, and then the next day I have little red bumps on cheeks and chin-area again. There isn't much you can do about it. You can wear makeup, but for me personally I found that just makes it worse. So I watch what I eat, drink lots of water, exercise, get fresh air, and use olive oil at night as a 'creme'
My biggest fear is that i would have another flare and loosing my kidney function and being put on steroids for the many years after a transplant. The steroids gave me osteonecrosis in my ankle and both my hips, i got both my hips replaced with in the last 4 months and i would be affraid that i would get more osteonecrosis in other parts of my bones
My biggest fear is not being able to work anymore. Currently I work full-time at a bank and I am a firefighter/first responder. This fall I plan on taking the EMT course. I'm afraid for how long I will be able to fight fires. Usually when I'm done with a call I'm whooped!! We had 3 grass fires in a row on Wednesday which kept me busy for over 5 hours and my muscles still ache from it. I can't help but be proud that I can still do this-it's what I have a passion for,
Flo has had a plethora of rashes over the years. Over the last 4 years her knees developed discoid rash that progress' to small sores, then it takes months for the skin to heal.
WARNING: PLEASE everyone remember, anytime you are exposed to FLORESCENT LIGHT you are exposing yourself to UV. Wear sunscreen anytime you are exposed to this type of lighting, at stores at schools. Don't ever let anyone tell you that "it's no big deal" you ARE extremely sensitive to UV rays.
I never have gotten the butterfly 'Malar" rash, but I do seem to get this blushing on my cheeks when I flare or if I have been out in the sun, infact because I dont have that rash it was hard to dx me becuase drs expect it but only 50% of us have it? They finally dx me by the blood tests and symptoms, my biggest fear with Lupus is an early death and leaving my daughter without a mother she is almost two now (She was 11 months at diagnosis) so its a scary thing to have, I only pray I stay well...
i get rashes from the sun. i also get hives for no reason it seems. this was a huge thing for me before I was diagnosed, but now it is only a problem sometimes. i get little spots on my leg that i think are discoid lesions...but of course they disappear before i can get confirmation from my rheumatologist.
I get a discoid rash that never goes away if in the sun or under flourescent lights. I even get if around cigerette smoke. I am very photosensitive. My rash scars and never goes away. I the malar rash and subacute too. I get tired and fatiqued too
When my lupus flares , I get a really bad butterfly rash. The rash usually is "red raw" and stings quite badly and peels. Thankfully i haven't had a flare in a year and a half.
As i already have kidney involvement, my biggest fear is it getting worse and also the fear of my long term future of the possibility of having children one day.
I don't get the butterfly rash but my forehead gets the rash when I'm getting tired..my biggest fear would be having my other organs attacked by lupus...my kidney was attacked and I have no idea what's next? I just keep praying each day for that not to happen. I need to stay healthy and alive for a long time while my kids are not yet independent. They need me and getting badly sick is my biggest fear coz I won't be able to take care of my lil ones...
Also, I just recently was told about nicole paxson cosmetics.... makeup designed by a woman with lupus, for women with lupus.
Kind of pricey, though....
My fear is that the constant "not knowing" will cause me to stop making plans and having bigger dreams. If one day I'll get tired of having to cancel or put off or miss out on things that are important or "life (career) changing" and just stop making those plans to begin with.
I'll occasionally get a red, raised rash in a faint butterfly shape... it usually just looks like a weird burn or something so often I won't even try to cover it up (usually because I'm too tired to bother)... but if I need to , I sometimes use cold compresses and then a small amount of a green tinted concealer to cancel out the redness and then put my normal concealer or foundation over it (Dermablend works well, as does Mary Kay..)
I don't get the rash unless I am stressed out or have been in the sun. My biggest fear is leaving my children without a mom. I hate taking the methotrexate but I do it so I can stay well for them.:)
As for my Fear lets just say its not dieing, Its more like Depression becaue it runs in my Family and the thought of being anything but my cheerful, happy optimistic self is scary, I'm afraid that if I get depressed no one will listen to me or care about me anymore.. I'm also afraid of surgery, I know its weird but until I got Lupus I was Healthy and never had to stay in the hospital or get blood drawn and now I have... Surgery has always been my number one fear in life.
princesskris1000 4 months ago
I'm new, thanksgiving week will be my 6 month mark of being diagnosed with Lupus. I love just being active, not soo active that I loose weight or put myself in danger but enough that I'm healthy and having fun. I have had the butterfly Rash since I was atleast 9 maybe younger, the only thing I do for it is wear wide brimmed hats and sunscreen when I go outside for more than a couple minutes. Its been a part of me for as long as I can remember so I dont really care, It adds to my Beauty.
princesskris1000 4 months ago
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Cover up your Lupus scars with Dermaflage- our customers cover their scars everyday and no one knows they are there. You no longer have to just live with them!
Dermaflage 5 months ago
hi my name is sadi i have just bean diagnosed with lupus i have bean watching your videos they are good and i have bean having a butterfly rash and swelling in my feet im constontly tired i doent ever fill like im geting any rest. im scared if its going to get wors i also have back proublems so dilling with thas to thanks for all your videos.
sadihymas 6 months ago
I don't get the rash either, but everything else....including losing my kidney. When I was 21 lupus as completely killed my right kidney and it had taken many many hospital stays to keep the other one working properly. You definitely don't want kidney involvement. You're an amazing young lady & I really hope you help tons of people and offer them hope. I know I have found my vehicle to do that. My biggest fear has been not seeing my children grow up. I have already missed a lot of their lives.
90tolife 7 months ago
YOU CAN BE A SUPERSTAR!!! I SEE IT IN YOU< SERIOUSLY!!! U R! ;')
mrstimber0311 7 months ago
This has been flagged as spam show
You might never get the rash that bad,,,,,you are young you should just stay out of the sun.....nothing more may happen to you...so just do what you do and don't worry because you know that makes things worse.....rashes and kidney problems do not always happen. Good luck
zuppie699 8 months ago
You might never get the rash that bad,,,,,you are young you should just stay out of the sun.....nothing more may happen to you...so just do what you do and don't worry because you know that makes things worse.....rashes and kidney problems do not always happen. Good luck
zuppie699 8 months ago
I was diagnosed with lupus back in 1999,(DLE) I have had no luck with any corticosteroid creams or ointments. I have had a lot of luck with Avon Anew, believe it or not. I had a very thick almost kind of scale on my nose, after using Avon Anew, it is almost gone!
myhideaway08 8 months ago
Lupus has taken so much from me.I can no longer: work, take care of myself, stand long, walk far, hike, dance, swim, clean, cross stitch, crochet or any thing I used to do when I was not sick.I've had liver, kidney, gallbladder and cognitive problems.Rashes kind of help my family know how bad I am getting when we are out.I don't want to go blind.I am not afraid to die.I just don't want my family to hurt.
babble2leeza 8 months ago
@babble2leeza looks like you have a pretty severe case of lupus and I wish you the best with your struggles. I wish my words could do more. Have you found a good doctor? Cause if not I would keep looking.
bigsanfer32 8 months ago
I got a spot on my nose when I was 16- Had it checked- they said it was nothing to worry about. Now I'm 35. I just found out 2 years ago that the spot on my nose is lupus. I do have the butterfly rash, across my face & on my ears. It itches, peels and blisters. I mostly worry about what effect Lupus has had on my organs after over 18 years... had a Pet Scan done- Abnormal cells widespread from the base of my neck down to my abdomen. I try to be strong- I just pray... God bless you..
peacemakerpitbulls 8 months ago
my arms and legs get covered in a red blister type rash. i also dont get the butterfly rash.
emval7 9 months ago
I get this red scaly and itchy rash that comes up on my hands, but on my face it will itch and get red but not scaly. I have never had the butterfly rash but I do look very flushed with dark circles under both eyes.
pris72 10 months ago
thank god youtube.i wanted to ask so many questions but i couldn t find anyone.i think we have lupus in the same level.i feel tired i can t sleep at nights becouse of some other neurological problems (restless feet)and when i caught a cold i m in a very bad situation than before the lupus.but my biggest fear is that even though i take my medications it will came back and i will be like me before the treatment.it was painfull body and soul.guys we need good psycology!we are special bec we know.
Dimitot 1 year ago
my cheeks get bright bright red and bumpy, and then I get the same type of rash on the tops of my upper arms, just a bit more mild
4595kpelletier 1 year ago
GOD i know, I hate being so tired!
micaisawesome 1 year ago
brain involvement. i have already been thru the kidney involvement, stage 4 and also nueropathy of my feet,the ability to walk .. have had to relearn this in the last 10 months. have had liver involvement,and a splenectomy. i am in fear that brain involvement will be the final stage for me, it just feels this way to me and i have had this disease since 1996 or even earlier. i was misdiagnosed with scleroderma and treated for it for almost 4 years before i was hospitalized and rediagnosed
TheJuryDuty 1 year ago
Yep....God has a plan for you! Maybe it's that people can see Him through you (I do) or maybe He'll just heal you and that will bring many to Christ!
I've had ankylosing spondylitis (autoimmune arthritis) since I was 15, I'm almost 39 and it's been painful and tough. But, there is a reason. I'll find out someday.......in the meantime.....I'll follow Jesus Christ!! AMEN!! :-)
Wivanunu 1 year ago 2
This is a truly inspiring video and you are a truly inspiring person! Cici sent me and I absolutely love your videos! I subscribed!
emmaxxbeauty 1 year ago
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i dont get butterfly rash but i do get little rashes all over my body, how did u know that u have lupus?what are the tests that u went 2?
ajaneboyd 1 year ago
i dont get butterfly rash but i do get little rashes all over my body, how did u know that u have lupus?what are the tests that u went 2?
ajaneboyd 1 year ago
I don't get the butterfly rash either and I have MCTD just like you. I do get flushed in the face when stressed and I get rashes on my thigh, buttocks, arms and hands. My biggest fear is not being here to watch my 16 & 11 yr old daughters grow up. Sam, You are a beautiful strong girl and I don't want you to get discouraged. It saddened me to see how sad you feel and how you are holding back your tears. You are that superstar you want so much to be because you are a Hero to all of us. SMILE! xoxo
terryrodcrz 1 year ago
My biggest fear is My lupus taking over and me not being here to watch my baby girl grow up.
Brennaburk111805 1 year ago
I am 19 and I usually get the rashes on my face (the butterfly rash) and my chest and neck turn severely red. It sucks ha. You seem so positive and I admire you for that[[: I love singing and I keep up my spirits and am continuing to sing and compete. What I'm afraid is having my organs start to fail on me and dying so young..
24Gisselle 1 year ago
I don't have lupus, but I'm studying for my PTA board exams and your video is informative and inspiring. You've got a great attitude, and with that you'll go far. Keep it up! :)
ashellet 1 year ago
About the rash, I don't have a typical butterfly rash but I DO have a rash. It is very obvious and it gets more obvious when, as you stated, I'm tired. Some days it's really faded and I get excited, and then the next day I have little red bumps on cheeks and chin-area again. There isn't much you can do about it. You can wear makeup, but for me personally I found that just makes it worse. So I watch what I eat, drink lots of water, exercise, get fresh air, and use olive oil at night as a 'creme'
MissLupus 1 year ago
My biggest fear is that i would have another flare and loosing my kidney function and being put on steroids for the many years after a transplant. The steroids gave me osteonecrosis in my ankle and both my hips, i got both my hips replaced with in the last 4 months and i would be affraid that i would get more osteonecrosis in other parts of my bones
afishaswimmin 1 year ago
My biggest fear is not being able to work anymore. Currently I work full-time at a bank and I am a firefighter/first responder. This fall I plan on taking the EMT course. I'm afraid for how long I will be able to fight fires. Usually when I'm done with a call I'm whooped!! We had 3 grass fires in a row on Wednesday which kept me busy for over 5 hours and my muscles still ache from it. I can't help but be proud that I can still do this-it's what I have a passion for,
dickschick 1 year ago
Flo has had a plethora of rashes over the years. Over the last 4 years her knees developed discoid rash that progress' to small sores, then it takes months for the skin to heal.
WARNING: PLEASE everyone remember, anytime you are exposed to FLORESCENT LIGHT you are exposing yourself to UV. Wear sunscreen anytime you are exposed to this type of lighting, at stores at schools. Don't ever let anyone tell you that "it's no big deal" you ARE extremely sensitive to UV rays.
l
Lupusology 2 years ago
I never have gotten the butterfly 'Malar" rash, but I do seem to get this blushing on my cheeks when I flare or if I have been out in the sun, infact because I dont have that rash it was hard to dx me becuase drs expect it but only 50% of us have it? They finally dx me by the blood tests and symptoms, my biggest fear with Lupus is an early death and leaving my daughter without a mother she is almost two now (She was 11 months at diagnosis) so its a scary thing to have, I only pray I stay well...
ILUVHORSES1981 2 years ago
i get rashes from the sun. i also get hives for no reason it seems. this was a huge thing for me before I was diagnosed, but now it is only a problem sometimes. i get little spots on my leg that i think are discoid lesions...but of course they disappear before i can get confirmation from my rheumatologist.
mellzie19 2 years ago
I get a discoid rash that never goes away if in the sun or under flourescent lights. I even get if around cigerette smoke. I am very photosensitive. My rash scars and never goes away. I the malar rash and subacute too. I get tired and fatiqued too
dooners2u 2 years ago
When my lupus flares , I get a really bad butterfly rash. The rash usually is "red raw" and stings quite badly and peels. Thankfully i haven't had a flare in a year and a half.
As i already have kidney involvement, my biggest fear is it getting worse and also the fear of my long term future of the possibility of having children one day.
rachaelchikkybabe93 2 years ago
I don't get the butterfly rash but my forehead gets the rash when I'm getting tired..my biggest fear would be having my other organs attacked by lupus...my kidney was attacked and I have no idea what's next? I just keep praying each day for that not to happen. I need to stay healthy and alive for a long time while my kids are not yet independent. They need me and getting badly sick is my biggest fear coz I won't be able to take care of my lil ones...
babeehkrista 2 years ago
Also, I just recently was told about nicole paxson cosmetics.... makeup designed by a woman with lupus, for women with lupus.
Kind of pricey, though....
My fear is that the constant "not knowing" will cause me to stop making plans and having bigger dreams. If one day I'll get tired of having to cancel or put off or miss out on things that are important or "life (career) changing" and just stop making those plans to begin with.
melskimo 2 years ago
I'll occasionally get a red, raised rash in a faint butterfly shape... it usually just looks like a weird burn or something so often I won't even try to cover it up (usually because I'm too tired to bother)... but if I need to , I sometimes use cold compresses and then a small amount of a green tinted concealer to cancel out the redness and then put my normal concealer or foundation over it (Dermablend works well, as does Mary Kay..)
melskimo 2 years ago
I don't get the rash unless I am stressed out or have been in the sun. My biggest fear is leaving my children without a mom. I hate taking the methotrexate but I do it so I can stay well for them.:)
lupiemelly14 2 years ago