Living With Lupus: ANDREW shares his story

Рет қаралды 70,820

13 жыл бұрын

www.lupusnsw.org.au/ - Directed by Ninja Milk - Creative. Social. Content. www.ninjamilk.com
We sit down with Andrew who shares his story and journey living with Lupus.
Please consider donating to the Lupus Association of NSW to help find a cure for Lupus in our lifetime.

Пікірлер: 184

@gaylegreene1006 11 жыл бұрын

I'm 79 yrs old I was told when I was 50 that I had lupus & that I only had 2 yrs to live. Even though I have lost all my hair,have consent joint pain,rashes all over I'm still here. Live you life like you just aren't ready to go until you want to and Andrew you to can live to be 80,and enjoying your beautiful photography.Love to you and you beautiful Mom!!!

@staciemarie5859 3 жыл бұрын

Oh you beautiful woman! Thank you for sharing that! 2 years to live because of lupus 🤣🤣 My grandmother lived to be 98 and I plan on sticking around well past 100 without a diaper or wheelchair. DR.s really need to stop telling people things like that. We die when it is our time and until then we should live every single day like there's no tomorrow! Everyone have a beautiful Thanksgiving and although we may hurt we are alive to see so many beautiful things ❤ find those beautiful things!

@angelsbutterflies6293 3 жыл бұрын

@@staciemarie5859 This lady here is the best!! A great inspiration to me and I'm sure so many others. Hold you're head up high and keep that positive attitude because like Stacie said Doctor's need to stop telling people these things and also like Stacie said live each day like they're is no tomorrow!!

@staciemarie5859 3 жыл бұрын

@@angelsbutterflies6293 I love you lady 💜

@babybaby5893 3 жыл бұрын

What a beautiful soul!! Thank you , you inspired me the most. God bless you

@Rangoli2020 3 жыл бұрын

Hi can you please let us know what medication or any diet your following...I will be very helpful for others

@MsMOLLYKINS 11 жыл бұрын

I just wanted to say I have had sle for 43 yrs now It took 33 yrs for the final diagnosis and I to have had kidney nephritus. I have neuro issues on the bad side of normal and its encouraging to see a young man still getting on with it. keep up the fight

@emmakatuke9353 10 жыл бұрын

Heads held high..positive is the attitude,,thanks andrew :-) :-) Was diagnose in March 2009 n still goin positively..for the sake of my only son who is turning 12 in October.. Lot of support n family is all u need

@fairburngordonstephanie5398 6 жыл бұрын

Emma Katuke.

@sandracalhoon7444 6 жыл бұрын

Lupus is also known as "the Imatator" meaning that it mimics other diseases and so sometimes it takes forever to diagnose. I know because this happened to me. Most importantly is to find a good doctor one who listens to you and understands the signs and symptoms of Lupus. So, while you are waiting for a Rheumatologist to see you, you can at least be in some sort of treatment. I am currently on Methotrexate and heard good things with this medicine. Stay strong. If a Dr. tells you that because your blood labs are negative for Lupus, might I suggest another doctor. With Lupus you can have negative lab values and that doesn't determine if you have Lupus. You can have Lupus and have negative lab values. There are different kinds of Lupus as well. Please please if you think you have this, do your research and find a caring compassionate doctor who doesn't brush you off or who tells you it is "depression" when you know your own body. I was told everything in the book. Stay strong.

@Galgarrick 8 жыл бұрын

Andrew, you and your mother are very brave. I feel the love she has for you and you for her. I am so glad you have a strong support system. My son (15 years old ) was just diagnosed in November 2015... He had a very high fever and was initially diagnosed a virus, 10 days later, he was urinating blood and was diagnosed with kidney stones... the joint pain had been going on prior - but that that was diagnosed as Oshgood Slaughter (or growing pains), he's a athletic High School student, playing Baseball all the time, so it seemed reasonable. However, soon the exhaustion came - 12-15 hours of sleep, constant bloody noses and blood in the urine. He presented with a horrible nasal hemorrhage, sever anemia and was admitted to the hospital on 11-9-15. After a few days in Pediatric ICU, and a Kidney Biopsy, he was confirmed with Mild Active Focal Lupus Nephritis III. Like your Mom, I am working with our medical team in Los Angeles, and we will participate in an annual Lupus Walk to raise funds for this debilitating disease . Thank you for sharing your story. So few young men get this disease - it's hard for a teen boy to wrap his head around. GOD BLESS YOU AND YOUR FAMILY... May your days, weeks, months and decades be pain free and SOMEDAY SOON LUPUS FREE TOO.

@Williamb612 Жыл бұрын

I am 62 and have had lupus for 30 years…took about 10 years to be diagnosed. There is something about not having a label or diagnosis which makes thing worse. My symptoms were: extreme sensitivity to sun light. Rashes. Food sensitivities. Brain fog. Mouth ulcers. Extreme fatigue. Muscle atrophy, dark circles under eyes, and shortness of breath, swollen lymph nodes in neck, sore shoulder joints….and these symptoms would come and go with no apparent rhyme or reason…I used to call Lupus the “traveling gypsy” because you never knew where and when it was going to show up. When these kinds of symptoms show up, and not on any predictable cycle, it can play havoc with you mentally and socially…you never know when and where the different symptoms will manifest, which caused me to become seriously introverted. (btw, I was an athlete, and never drank or smoked) Over the last 15 years, since prescribed hydroxychloroquine, almost all of my symptoms have significantly diminished…a few times a month I may get a flare up, but not intense and runs it’s course quickly. Folks: hydroxychloroquine was a God send: 400 mgs per day, may take a couple of months to fully kick in, along with clean food, lots of sleep, and eliminating as. icy stress around you as possible, including toxic work environments and toxic relationships. Once you find equilibrium, your life will resume, however better than ever before you manifested symptoms, because the road to health if you are serious about it, transforms your heart and mind, and realigns your life to what is important. Take care

@vesperfairchild8582 11 жыл бұрын

You are so incredibly lucky to have the support you do. You are also inspirational in what you do with the days you feel well. I also have this disease and have had many close and scary calls with it. I hope you are flare free for a long time and never forget to let the positives shine through.

@spcalifa9492 10 жыл бұрын

Andrew, I was just diagnosed with Lupus Nephritis and I am glad I found your inspirational video during my research. Thank you so very much to sharing your story, it brought hope for my day.

@JENNIFERwolve 10 жыл бұрын

Andrew. I hope you are doing better today. We have similar stories and passions, so thank you for sharing yours. Sending you energie and health. Love from the Netherlands. Jenny

@MuskPumpkin 12 жыл бұрын

Thanks Andy. I've only met one other guy w/Lupus since I was diagnosed. I see this vid was posted in May this year, do I hope you are continuing to do so well as you seem here. On Christmas Eve day, it will be 12 years since my diagnosis. My diagnosis took 9 years of progressive deterioration & more hospitalizations than I can remember (but thankfully no serious kidney involvement.)

@Hope-th7cv 10 жыл бұрын

Thank you Andrew for sharing your story, for your good cheer and courage. I learned today that I have lupus. I understand. Thank you for giving me hope. I will they my best to live my life to the fullest. God bless you and your mother. Warmest regards from Texas. Receive a brotherly embrace. Regards, Jean-Claude

@Dawnnamullen 11 жыл бұрын

Thank you so much for sharing your story! I was just diagnosed with lupus in February and having a very rough time, I am fighting to start a lupus walk here in landing,MI! Anyways point being was I really enjoyed listening to your story! Thanks

@missy3830 10 жыл бұрын

Andrew thanks so much for sharing ur experience.I've had Lupus for 23yrs now.Right now I'm having alot of trouble with the Chronic Fatigue so I get sleeping 15 or more hrs a day.

@fruitybunny5106 6 жыл бұрын

Thanks Andrew for sharing your story. Bless your heart ❤

@mgemel 11 жыл бұрын

Thank you for being so strong!!!

@vriend64 11 жыл бұрын

I am male of 48y, lupus erythematosus from 2004 from Belgium. Just wanted to say it can catch on every person. but most comon are woman, 90%. At this moment on a bad string, joint pains, and all the flue things. Hope to get to work tommorow because it cost also a lot of money to be ill. And i have a family to feed so.... I understand your pains and also the emotional rollercoaster you and your family has to go trough. Your to young to suffer, keep head up "you are not alone".

@niptodstan 6 жыл бұрын

I've just been diagnosed with this. I've been ill for around ten years. It's made me bankrupt as I couldn't work. But at least I know now.

@user-Alhashemi 4 жыл бұрын

This Treatment will cost you nothing but only listening I want you to do this simple experiment Simply listen to the link with the headphones to the end while sitting at home It is not in English, but its tones eliminate many problems, including lupus ((And tell me what I felt )) kzfaq.info/get/bejne/p895jaR118ndeYU.html

@nnicollan 6 жыл бұрын

@anthonylaszlo7487 2 жыл бұрын

I have lupus as well. I struggle with being happy. My family called me a liar and thought I was just on drugs and that’s why I was having rashes and kidney pain and fatigue. Even after I got diagnosed they still treat me bad. It’s important to have a loving family when you have lupus, otherwise it’s very depressing and difficult. I went through all of it alone. I used to work 2 jobs, go to college, and exercised 7 days a week, now I struggle getting out of bed. I understand the thoughts of wanting to die. I don’t know how I’m going to live. Everyone I grew up with just thinks I want to be a loser when that’s always the last thing I wanted to be. Both of my parents were on drugs most of my life but my dad got clean and has been supportive and my grandparents.

@anthonylaszlo7487 2 жыл бұрын

I also have two secondary conditions, Erythromelalgia and Raynaud’s disease, if anyone has those as well I’d love to hear how you manage it?

@jennap7438 10 жыл бұрын

Thank you for sharing your story! With Lupus affecting mostly women, you don't hear about how it affects men You are a fighter in your illness. I know how hard it is as I have Lupus as well along with other immunologic diseases. Keep up the good fight! Jenna

@nickhac 13 жыл бұрын

Nice video, sad to see your experience, humbled by how brave you are!

@brendagoetz6752 12 жыл бұрын

Thank-you for sharing, I hope your well. I have been diagnosed with a lupus and Antiphosphilipid syndrome for 26 years, and still going strong:)

@Kparso01 9 жыл бұрын

From Seattle, WA. I'm 22; female. My mom has lupus, my grandfather has it worse, my brother may have it, and I'm getting tested this year. I feel lucky that I've learned about it from a young age, but so surprised to find that I have suddenly sprouted such symptoms.. I find myself more surprised still that more people don't know about it, because it can be dangerous! Especially for men. I am glad you got tested because it may have saved your life. Keep up the good fight... I know I will. Good luck. Xoxo

@julie5647 11 жыл бұрын

Thank you for sharing. I have Lupus also. Two important points that I needed to hear...make a positive with a negative and get out and live life because we don't know what tomorrow holds.. God Bless from GEORGIA, USA

@willieb20052001 4 жыл бұрын

Ninja milk im a 32 year old male and lupua ia very devastating. I have lupus and it has gotten a while lot better than when it first started and it from when it use to give me hell. But I say stay strong for your mom and dad continue to be brave with lupus.

@user-Alhashemi 4 жыл бұрын

Treatment will cost you nothing but listening I want you to do this simple experiment Simply listen to the link with the headphones to the end while sitting at home It is not in English, but its tones eliminate many problems, including lupus And tell me what I felt kzfaq.info/get/bejne/p895jaR118ndeYU.html

@erichschmidt6717 6 жыл бұрын

Thanks for sharing. May a cure be found soon

@ElizabethMcQuarrie 11 жыл бұрын

Thanks for sharing your story! I was diagnosed in April of 2010 at 16. My lupus started by attacking my Central Nervous System. I became so sick so quickly that my doctors knew that something strange was happing; I had meningitis twice in the span of about 2 weeks and the second time landed me in the Pediatric Intensive Care Unit. I too was treated with chemo, two different kinds, and of course steroids. The headache pain from the meningitis have never gone away. Lupus really takes a toll.

@user-Alhashemi 4 жыл бұрын

@blazemason631 9 жыл бұрын

Thanks so much

@ronaldswangler2538 5 жыл бұрын

Wow this exactly like me. Was diagnosed in my early 20,s and by age 28 I was in kidney failure. They tried chemo but it didnt work. I did dialysis and then my brother gave me a kidney. My flares dont happen as often because of the immune suppression drugs but they still happen. I've noticed when the barometric pressure changes I always flare. I've been flaring the last 2 days and without my weed and percocet I wouldn't be able to type this. I wish you the best bro and stay strong

@abhisheksingh1984 4 жыл бұрын

Ronald Swangler I am a male lupus plz help me paining to much from India country how can i tell u

@robinhood4640 4 жыл бұрын

@@abhisheksingh1984 I would strongly advise studying air pollution and do your best to reduce your exposure. I know this may be hard to do but your flares will be reduced.

@abhisheksingh1984 4 жыл бұрын

robinhood 46 sir everyone left me bcz of this disease for living I want to work that the saddest part I want to depend on my self sir

@user-Alhashemi 4 жыл бұрын

Roland) Treatment will cost you nothing but listening I want you to do this simple experiment Simply listen to the link with the headphones to the end while sitting at home It is not in English, but its tones eliminate many problems, including lupus And tell me what I felt kzfaq.info/get/bejne/p895jaR118ndeYU.html

@nickhernandez6835 2 жыл бұрын

Yes I agree with you my weed and Norco are what get me though some hard days of pain I don't wish this on no one I feel so tired when I wake up in the morning I feel like I didn't sleep

@remedyfarm 11 жыл бұрын

Thanks so much for sharing your story. I'm a Lupie sending you good vibes from Ottawa, Canada:)

@faclc 9 жыл бұрын

Hi Andrew, I am sending this from Portugal. I was also diagnosed with SLE and just like you, had severe lupus nephritis. My doctors avoided for now giving me the chemotherapy drugs (cyclophosphamide) due to my age (I am 27 yrs old), instead i've been taking mycophenolate mofetil (MMF) which has 90% less toxicity when compared with the cyclophophamide. Well not all Lupus cases are the same, but maybe you can discuss with them if this drug fits your profile! :) Good luck! I hope we can all bring more awareness to this disease. Cheers

@fruitybunny5106 7 жыл бұрын

Are you taking warfarin?

@sharmalokendra2009 6 жыл бұрын

Hi friends..My sister is also having SLE and as of now she is managing life happily in parallel with Ayurvedic treatment in India...Thanks....As of now neither she is having any joints pain nor any fever....i hope that very soon she will be cured...

@azharudeensalim 6 жыл бұрын

Fabio André im from india...my lupus diagnose was on my 23rd birthday (3 years back) .like you i was diagnosed with lupus nephritis class 4 5 .and my condition was worse. heavy joint pains and anemia . no hairloss or rash or photosensitivity . Joint pain ,fever , proteinuria ,oral ulcers was my symptoms.after renal biopsy, discussion with my doctor we decided to go with RITUXIMAB over cyclophosphamide ...by god grace I'm perfectly fine now i recovered...now i visit my doctor once in 2 months and as part of regular checkups. My MMF is tampered to one/day. One thing i learned is we need mental health to pull through... May god bless you

@yrm-hs4zx 4 жыл бұрын

Hi are u still there?

@anishshrestha8665 2 жыл бұрын

@@sharmalokendra2009 in India which ur sister gone to treatment

@2011work2008 6 жыл бұрын

Ugh so young, hope he’s doing better thoughts and prayers.. 💖

@SamanthaSpeaks1969 10 жыл бұрын

Your systems started to appear about the same as I became ill. I'm surprised the Dr said you were depressed; that's usually reserved for women. My brother suffers from Lupus also, so he was 1 of the lucky 1 in 10 also :( It's almost like you are "grieving/mourning" your old life and you begin to create a new life; a new way of living with limits and boundaries. I have been truly blessed; my organs are good :) Praise God! I suffer from more of the muscle/joint affects and some lung and skin issues. Be careful with the medications, some times they can be worse than the Lupus it self. Thank you for sharing your story with us! Soft hugs!

@angelogebbia369 2 жыл бұрын

I’m living with lupus too thank you for this video it helped me a lot

@LizzzyBee05 9 жыл бұрын

Your story is so similar to my twin brothers thank you for sharing your story it was also very difficult for my brother to get diagnosed because he was male. He was finally diagnosed when he had kidney damage, liver damage, and lung failure along side with Arthritis.

@cachetmcghee3506 7 жыл бұрын

is he ok now

@ac10xxz 11 жыл бұрын

Very great video

@cherryjubilee2599 8 жыл бұрын

andre im annie originally from jamaica now live in newyork i went through the same thing you went true wt loss chemo kidney its been hard keep up the fight and in still fighting every day god doesn't give us no more than we can hangle.

@marydfouni629 8 жыл бұрын

Very Inspiring

@LupusDesign 8 жыл бұрын

Unfortunately, many patients go to the doctor with "vague" symptoms, especially fatigue. Andy was "lucky" in that his diagnosis took 6-8 months. Many women are dismissed as being depressed and/anxious and can be undiagnosed for 20 years or more.

@ct92404 8 жыл бұрын

It's not just women, and in fact that entire idea that somehow autoimmunes disease affect only women needs to STOP. I'm a young man, and I also have an autoimmune disease...Sjogren's Syndrome. It's horrible and completely changed my life. I get a lot of the same symptoms as Lupus - severe fatigue, joint pain, Raynaud's, and even some neurological effects like short term memory loss and headaches. Thankfully, it hasn't affect my organs. But I had a very hard time getting doctors to listen to me and take me seriously. They kept trying to dismiss all my symptoms as being from depression and "anxiety," even when ANA tests were positive. They try to dismiss everything as being from anxiety now. It's a weak cop out that lazy doctors use. So this is happening to men too, NOT just women. There really need to be stricter laws which FORCE doctors to examine all possible physical causes of symptoms before they should even be allowed to consider psychological issues...otherwise they will try to dismiss everything as being psychological. I was finally diagnosed with Sjogren's in 2014 after going through 2 years of hell.

@LupusDesign 8 жыл бұрын

I think that in some ways men have more difficulties. There are diseases, such as systemic lupus erythematosus and Sjogren's Syndrome, which are predominantly "female" diseases. SLE has a ratio of 9:1 during child bearing years. Dr Daniel Wallace observed that if SLE was predominantly male, there would be more funding and research. The teaching of autoimmune diseases such as SLE is poorly taught and many rheumatologists have never treated lupus patients. Yet, SLE is more common than leukaemia, cystic fibrosis and muscular dystrophy. It seems you have also had a difficult time getting doctors to take seriously what YOU are saying. If you are interested, LUpus Patients Understanding and Support have a LuPUS Message Board where you can find information and support. Our services are free at htt

@gleroyTullySAEHEYKID 5 жыл бұрын

@@LupusDesign cancer funds are predominantly for breast cancer. no one is aware that april is testicular cancer awareness month. this is not a time for gynocentrism. where is your empathy? I'm a male with fybro, lupus and possible leukemia. Undiagnosed for decades, docs would say it's depression. keep gender out of it.

@Carolina3788 3 жыл бұрын

For me it took 5 months to be diagnosed! I was lucky in that sense!

@Carolina3788 3 жыл бұрын

@@ct92404 Lupus and other autoimmune diseases happen to both women AND men. The thing is, more women suffer from it than men. Doctors need to be unbiased and treat patients like they could be a small percentage of a disease group even when it affects the opposite sex more. I hate that incompetent doctors assume everything is a mental illness instead of doing thorough investigations and analising less likely cases just because of probabilities. 2 years is a hell of a long time to be diagnosed... I was lucky that I was diagnosed within 5 months. I have Sjogren's syndrome symptoms too since I have Systemis Lupus Erythematosus :/ I get all the symptomps you described and others too. :'( Hope you're feeling better now xx

@mariereneagonzalez 5 жыл бұрын

Andrew your amazing

@Tru1981 11 жыл бұрын

You are very handsome, thank you for sharing your story. I also have Lupus, its important to try and stay positive. We have good days and bad days with Lupus-The Wolf.

@TheJpar1969 11 жыл бұрын

I wouldn't wish this on anyone it is cruel and nasty .. It's crazy that I cant win the lottery but I can have this... Hoping for the best

@Yasgee 11 жыл бұрын

I wish everyone good health.

@MsMOLLYKINS 6 жыл бұрын

I am 48 in two weeks, they say I was born with lupus but I didn't get an official diagnosis until I was 21.6 months after my son was born but for ten yrs I was told yes then no until I went in anaphylactic shock. Now at 47/48 I M wheelchair bound with a diagnosis of hereditary spastic paraplegia . I have eleven seperate auto immune disorders including macular degeneration Sjögren's kidney disease. Anyway I hope you are doing ok young man , it's a struggle but with good meds to keep it semi controlled we can live longer and longer now, it's getting doctors to accept and treat. Three yrs ago I could barely make it the bathroom a trip to emergency,my GP and finally I went to my lead rheumitologist. I had been having a heart attack for three weeks but no body listened until my main specialist jumped in and nailed it. I'm ok with a stint but I'll need open heart soon anyway God bless and good luck xoxox

@fairlyhills5152 4 жыл бұрын

I'm super excited, I'm finally cured from Lupus, indeed there is a permanent cure with Herbs 🌿.

@kipaantws2643 3 жыл бұрын

May I know what kind of herbs did you use? Thank you so much

@user-wd5qw2sr4d 2 ай бұрын

What a handsome young man. Good luck young man.

@user-np3is5tp3x 11 жыл бұрын

I am on a low fat (vegetarian diet), no gluten and yes food is expensive! However, diet is only one thing. It doesn't cure lupus, it just manages it better and for me reduces the likelihood of any flare ups. Eating healthy is a must, but a special diet is different for everyone. Eat foods that makes you feel good, or works for your body. A lot of it was trial and error for me over the years.

@HeatherWilliamscomatreats 12 жыл бұрын

Andrew thank you for your videos, I have something similar its called Myasthenia gravis, you are brave thank you for the information

@eranbenavraham 5 жыл бұрын

I was diagnosed with Lupus at age 42. I am now 46. Lupus started to attack my kidneys. I was in hospital For 8 weeks. I was almost put on dialysis. EGFR dropped to 15. Thankfully, large amounts of steroids helped. Then I was diagnosed with thyroid cancer. Had a total thyroidectomy. Then taken off steroids and was placed on chemo. My kidneys are fine, I feel great, all the weight I put on is almost gone. I have another 2 years of chemo. It's tough. Mainly joint pain and fatigue. I can't work full time. It sucks.

@fairlyhills5152 4 жыл бұрын

I'm super excited, I'm finally cured from Lupus, indeed there is a permanent cure with Herbs 🌿.

@eranbenavraham 4 жыл бұрын

@@fairlyhills5152 Bullshit

@user-Alhashemi 4 жыл бұрын

@angelsbutterflies6293 3 жыл бұрын

Eran if you don't mind how did they find out that you had thyroid cancer. Because on top of having Lupus and they're doing a biospy on Dec 1 2020 because he suspects Lupus nephritis and to rule out anything else. For over 20 years I've had thyroid problems i have so many cysts and nodules on my thyroid it's not even funny and they found them alongtime ago and all they do is an ultrasound and thyroid biopsies to make sure that they aren't cancerous as the health insurance i have now has no Endcrindologogist or even an ENT and it stinks because I've always been thin my whole entire life and back in 2016 i became severely underweight and now this year 2020 as I'm in stage 3 kidney disease but had to have bloodwork done before my biospy i have no appetite at all i literally got to make myself eat or i wouldn't and i eat like a bird and I've always eaten healthy but now it's counter reacted and ( it's not because of eating because i hardly eat) and my weight just is like I've blew up like a balloon and I've never been over weight not even this slightly in my life and my cardio Dr says it's probably because of my kidneys but i know it's my thyroid and i don't know why just a general surgeon can't take out my thyroid because I've always been a small person all my life and i want to look like my old self again but most of all be healthy!! But the pharmacist i know his wife had less issues than me and they took hers out as well and all her weight came off and i talked to a nurse at the clinic i go to and same thing and it's all about the insurance. I used to have a great job with excellent insurance but never had time to use it i guess i should have but now that I'm unable to work i have the worse insurance ever but i guess it's better than nothing and i worry about my thyroid as well all the time. I was just wondering how they diagnosed you with thyroid cancer if you don't mind? Thank you and i hope all is well God Bless you!! Also I'm sorry was you're thyroid problems brought on my Lupus?

@eranbenavraham 3 жыл бұрын

@@angelsbutterflies6293 I was first diagnosed with lupus. I asked to have my thyroid scanned. I spent 25 years having ectopic heart beats, tachycardia and arrhythmias. Blood test showed thyroid function was normal. Scan showed I had 6 nodules and 2 suspicious. Had biopsy and it showed papillary thyroid cancer. Slow spreading. I had a total thyroidectomy and front direction. had 15 lymphomas removed. 2 had cancer in them. Thankfully the lupus and the arrhythmias settled down. so far I am doing well. put on weight hate that. cant seem to get it off. I really am not trying that hard. If all your tests have been normal, including biopsies, you should be fine. All the best.

@MuskPumpkin 12 жыл бұрын

[con't]. There are certainly better days, & not as good days, as you know. But mostly I've been in remission the last 8 yrs; I radically changed my life & managing stress is my #1 priority ALWAYS. Thanks for your inspiration, Andy. I'll fwd my email address to you by email. Hope ur enjoying ur new Summer!! Love & props from the U.S., friend. Darren

@MsMOLLYKINS 11 жыл бұрын

oh yeah I am from Sydney and my docs are at concord

@LupusPositiveLife 6 жыл бұрын

Stay positive

@robbieb2011 Жыл бұрын

Strong man. Hope he is doing alright.

@EllePole 2 ай бұрын

That poor guy. If the dr in training was failing to get a biopsy, after the third time I’d say “nope. No more. That’s it, you’ve tried and failed. This is torture”.

@cherryjubilee2599 10 жыл бұрын

Andrew I would love to compare notes with you about lupus and the treatments I live in newyork

@green15838 9 жыл бұрын

dmso and msm.God bless you.

@jonathanwright2925 6 жыл бұрын

Hope you are doing well. I was misdiagnosed with Crohns disease for almost 10 years because I was a white male even though my mother has severe lupus. Once I got a Dr who cared enough to run the blood work my ANA & dsDNA markers were off the charts/ Bad enough they repeated the tests with the same outcome. I hope you are still doing well, everyday is a struggle for me & I can't believe the 10 years of medical hell I went through before they figured out it was Lupus.

@yomama42020 6 жыл бұрын

Jonathan Wright. Im going through this now! Ive thought for 8 years that I have had crohns/colitis.

@user-Alhashemi 4 жыл бұрын

@sweetcheeks891 Жыл бұрын

How is he doing now? This was 9 yes ago.

@CommandoDigital 9 жыл бұрын

Awesome video. I produced a short last year about a little girl who was diagnosed with lupus. Terrible disease!

@CanadianBeefman123 5 жыл бұрын

Hello fellow Lupus brother...Your story sounds SO much like mine, five years for correct diagnosis...Both my liver and kidneys failed....I had to do dialysis. 2week coma, I'm another rarity like you...white, middle aged male. Maybe we can chat one day?

@robinhood4640 4 жыл бұрын

I was suspected of having lupus or scleroderma after severe kidney and heart problems for many years. It turned out air pollution was the main problem. Since i have drastically reduced my exposure i have very mild and rare flares. It's under control and much easier to live with.

@osawaruenorense1596 2 жыл бұрын

Hello, hope you are getting better? Sending love and light.

@Katellabe 8 жыл бұрын

I'm really lucky. I was just diagnosed with SLE and Lupus anticoagulant. But I didn't go looking for it exactly, I was in the ER for a Hemiplegic migraine and the blood work and symptoms just lined up, did more tests, and i turned out it was there. I had no clue what it was, but had been experiencing symptoms for years and years but just chalked it up to " I'm lazy! Oh today my joints hurt.. today im having severe kidney pain.." and " no doctor wants to deal with this, its nothing. I'll just rest, don't want to waste doctors time."

@cyanofelis 8 жыл бұрын

I know how that feels. If I hadn't visited my doctor mom and if she didn't make me go for that blood count that revealed profound blood abnormalities...then where would I be now? lol I was finally diagnosed this week. I hope you're doing well!

@Kikunis 7 жыл бұрын

Same here. The clown (lupus) created a blood clot and thus I suffered a stroke. Recovering (but it's sooooo sloooooow). We won the wrong lottery LOL Take care

@user-Alhashemi 4 жыл бұрын

@cherryjubilee2599 10 жыл бұрын

Hi andrew We should compare treatment I live in newyork

@westonkayne 11 жыл бұрын

I think I have this. I'm so scared that it could be low blood cell count. I flare out during the summer and my just so scared.

@staciemarie5859 5 жыл бұрын

The 5 year "death sentence" that once came with lupus is no longer the case, thank goodness that was in the 50's but now people are living much more normal life spans just with much more pain. I've been diagnosed and have lived with it for nearly 20 years now. Eat as organic as possible with as little chemicals in and around you as possible. ❤ I'm sorry your suffering from it also and I hope you have more good days than bad.

@staciemarie5859 3 жыл бұрын

@@angelsbutterflies6293 the only thing that works for me besides norco or is Topamax. You MUST start slow and increase slowly if needed and I don't think you can drink alcohol with it but it seems to help. However, if you are taking birth control pills BE WARNED they will cancel them out!!! I have proof right here and she's 15! I was 41 when I was completely blown away finding out I was 4 months pregnant! So hopefully it works as well for you as it did for me WITHOUT the side effects 🤣

@staciemarie5859 3 жыл бұрын

@@angelsbutterflies6293 My heart is just aching for you right now. I'm a single mother and two of my children are adults who are the most amazing people! We all live together and they help me raise my little one. I'm truly grateful for these amazing children of mine. Now back to you! Muscle relaxers make me feel like I'm a zombie but they do relax my muscles and everything else. I really don't like how they make me feel kinda depressed and disconnected. The Topamax relaxes AND takes that electrical sharp shooting pain away. I get that down my legs and arms and in my back and shoulders. See your not the only hot mess darlin! My Dr lost my file once and I started laughing and asked how can you lose a file that's bigger than most encyclopedias? When lupus is in your body so many other unpredictable things can happen. For example, right now I'm fighting a toenail fungal infection. No big deal for a normal person. Dear God, not me! I almost lost my foot and after a month of antibiotics and soaking 3x a day now I'm on MILD antifungal for the next month. Hopefully my toenail will fall out naturally or he'll remove it before Christmas. Hohoho lupus sucks! Oh wait I forgot, I also have a fungal infections in my eyes, so I'm a walking mushroom lady with Drs ORDERS to STAY HOME. I have no insurance and knock on wood so far have been ok with just my new family Dr who is an amazing older man. A friend told me about the Good RX app and I thought that was a joke or too good to be true but holy cow girl it's AMAZING!!! Without it the Topamax would be $98.00 I got the trial gold membership and then kept it because the savings were so great. Now it cost me $2.78 unbelievable! It's not a controlled substance and there are many uses for it. Migraine, antiseizure, bipolar, insomnia, anxiety....so it's widely used and shouldn't be an issue to at least give it a try. I just hope and pray it works as well for you as it did for me when I 1st took it because it was life changing! I've been taking it for about a month and a half now but also fighting this infection and the worst flair of my life so hopefully I'll be on top of my game before Christmas 🙏 I've been a Reiki Master energy healer for over 20 years and I'm so happy to now your doing your best to keep clear of chemicals because while I'm sitting here soaking my feet I'll be sending you some beautiful love filled healing energy to help you through this time. To overflow to those around you to have the knowledge and compassion to help and comfort you ❤ Feel better soon my friend!

@staciemarie5859 3 жыл бұрын

@@angelsbutterflies6293 and now you've touched my heart and filled my eyes with tears. I try really hard to try not to judge much. When I had my last child and died during her birth that meeting with the glorious bright light taught me SO MUCH IN JUST SECONDS. I do slip once in awhile but try not to because it's not my job it's God's. May we all judge others are harshly as we would like to be judged! God was good to me but I have always used His son as an example of how to treat others rather than an excuse to forgive my mistakes. I'm a healer not a judge and we each have our own struggles that nobody knows except us and our creator who, by the way, is very forgiving. Just like it's impossible for a husband to understand what his wife goes through having their children your healthy friends will never truly understand what your going through with your health. They are the toughest for me not to judge because they are the judgiest! Well you look fine so how can you hurt THAT BAD? Oh if only they could spend just a minute in my body, I bet they'd have a whole new respect for us lupus people! My Dr said but your so kind...I told him if you'd like I can treat everyone like crap just because I feel like crap but that's kinda pointless. Why be mean to everyone else when it's not their fault and maybe they can help me feel better? People don't care to understand because they are usually caught up in their own world and honestly have NO IDEA just how much your struggling. So absolutely not, I didn't feel upset in an angry way about how much you had to say I felt upset in more of an uneasy way that made want to reach out again because I can feel your aching lonely heart from missing two of the best men you've ever loved and I feel you need to be heard and understood if only for a moment. This is public so I won't share too much here but I lost my father in April after not speaking for years... he was on wife #9 so as full of fun and giggles as this girl is I guess chasing women, marrying and divorcing them was just much more important than his daughter and beautiful grandchildren. My point is not the loss of my unloyal father but the loss of your incredibly loving father and best friend who will be dearly missed during holidays and now when you could use some strong shoulders to lean or cry on. Then your husband, my goodness, no wonder your not doing so well! All this heartache and disappointment is wearing you down. DIS-EASE = disease I'm not sure if I shared with you that I've been a Reiki Master energy healer since 2000 and I have felt others energy every since I was a very young child. So when you wrote about losing your father and your husband yes, my heart was heavy and my eyes were overflowing and I feel that empty space you need filled with some love right now ❤ I'm thinking maybe your two beautiful men have sent me to you because you really are suffering desperately and no sweet soul sister I sure wouldn't let an animal suffer this way and I'll do my best to send you healing energy to help you stop suffering and start getting the answers you need and deserve. I had to ask my son for money for the electric bill today and told him I would make space in the garage for his new Mustang as soon as my foot will allow me to. I started crying and he asked me why. I told him I felt like a complete failure that hasn't even been off the couch except to go to bed for a month and I'm just sooooo sorry. He gave me a hug and said seriously mom you don't need to get that stressed out about a stupid light bill! I love you lady. You know he's right and all that stress wasn't helping me heal and neither was feeling like a looser who wasn't doing anything to help anyone. Then I saw your message and realized I DID HELP SOMEONE!!! I DID MAKE ONE HEART HAPPY TODAY and I didn't break Drs orders I stayed home! I truly believe your getting worse because your completely stressed and your missing a huge source of your normal go to strength. Your friends have shown their true colors and that can be truly devastating! It can truly make you sick. It seems you've had no one to really talk to and no one to truly care for a long time so I'll give you my email address and do my best to check it as regularly as I can. Please be patient with me as sometimes I forget but I think I'll remember this one for sure! reikimastermama@yahoo.com Sending healing energy your way

@staciemarie5859 3 жыл бұрын

@@angelsbutterflies6293 I've only gotten through half of this but before I finish I'm hoping you read this before you leave for the Dr! My prayers are with you today my friend! Your precious father is to your right and your sweet hubby is on your left. They will be with you the entire day and may every hand that touches your body be blessed with knowledge and kindness to help you feel better and heal you in the best and fastest way possible (and most affordable for you also) May your day be peaceful and smooth and filled with laughter and unexpected blessings Know your angles are always watching over you and now I'll be here too. ..

@staciemarie5859 3 жыл бұрын

@@angelsbutterflies6293 Good morning beautiful sunshine! It seems I'm not the only gifted soul here. On election night my oldest daughter came home to tell me what's been making her "not herself " for years. I'm a warrior woman and I'm stronger than most women I know (maybe not you) but when a mother hears her child cry and tell her these unthinkable things that unfortunately I have also survived and was sure I'd done everything in my power to prevent from happening to my children. Well beautiful butterfly angel I'm guessing there's just absolutely no way to hide devastating pain like that. My mother listened and her response was... Do you guys want pumpkin pie for Thanksgiving? So, when I saw what you were going through I saw a bit of myself if I didn't know how to say F you people who have hurt me and my children! And now I'm going to try my best to teach you to do the same! You are a beautiful woman and we are NOT GOING TO ALLOW ANYONE OR ANYTHING TO COMPROMISE OUR HEALTH OR WELL-BEING ❤ I already love you lady...don't know how and it really doesn't matter. You needed a friend and your beautiful angels found ME and brought me to you! I was very sick yesterday with a fever and cough. My daughter is getting a rapid covid test today at noon. You say I'm kind and should write a book. That makes me smile so huge because my favorite grandma said that constantly! I always asked what she wanted me to write about and she said I don't even care I just love listening to your kind thoughts written down. Oh I miss that sweet girl. Let me just tell you, I'm not always nice! I give what I get. I was trying to help another single mom struggle with her sensitive child being bullied at school explaining how incredible homeschooling can be and my kids graduated with honors also on the Presidential honor roll (not to brag but to explain she will still get an exceptional education) when some nasty random women told me , "Obviously your children are MUCH MORE intelligent than you are! " I don't think she thinks I'm very nice now! I doubt she's questioning my intelligence and she just might think twice before saying something so rude when she should keep her rude comment to herself. She not only got it from me... I had a team of angry angel moms ready to teach her a lesson in kindness. Normally I try to be the peacemaker. I saw an older woman angry about all the Christmas trees going up BEFORE Thanksgiving!!! I could've kept scrolling but the healer in me said stop, help her see and understand so she won't be angry through the holidays and perhaps her heart will be joyful instead. So I explained that all these little children have been a bit scared of the masks and all the unknown new things. Some have lots family or friends and many havent and won't see grandma and grandpa and they miss them and just don't truly understand why. So the fact that all these uptight parents are breaking the usual traditions and just saying why wait for the right time for the tree let's get this festive season started and bring in some JOY isn't the worst thing that's happened this year. Look at all the happiness its created... So yes I can be extremely compassionate and caring but don't be mean or unfair to anyone because I have a habit of standing up for what's right and I'm not shy about it 🤣 I'm writing down your email and we'll take this privately. Anyone still reading this besides us 2 girls...don't roll your eyes... your the one still here reading! Lol Talk soon ❤

@Kastrero808 11 жыл бұрын

I have this too...your so brave since most people who have lupus are woman

@lol-tuber3940 6 жыл бұрын

Do people experience poor erection after years of medications?

@passinthru5244 10 жыл бұрын

only have my husband for support. however most men don't expect to have to care someone sick so its challenging. chemo nearly killed me. lost the kidneys on dialysis 5 times a week. need a kidney tho, the doc is always telling me on every visit. husband isn't a match its something else, I tell you. but hang in there maybe a cure is on the way right? blessings.

@thefunnerman6430 Жыл бұрын

I am also a male with Lupus had it since I was 12. I am 28 now.

@Saiyan1229 Жыл бұрын

So crazy how i never ever know this disease existed till this year.. cause my brother got it. This diseases needs way more awarness. And awareness that IT DOES happen to men.

@cokerainbows 11 жыл бұрын

Lost it all? Im 24, i was diagnosed when i was 20, thinning hair...joint pain, rash on face..having heart problems, i think, out of breath, dizzy at work, heart rate was slow the other day...dont wanna lose my hair though!

@namdoltenzin3940 7 жыл бұрын

cokerainbows I am just diagnosed with this illness .i am 20 years old now .can u plz tell me about ur experience in these 4 years....... please

@pantegohummus8215 8 жыл бұрын

I'm struggling to get diagnosed. my CrP is high but my ANA is negative

@anthonyhernandez8567 7 жыл бұрын

Pantego Hummus

@pantegohummus8215 7 жыл бұрын

+Anthony Hernandez yes? :(

@jonessuzette 13 жыл бұрын

I would love to chat. My disease has almost mimicked yours. Only difference is time line.

@delish111 5 жыл бұрын

Andrew your mum.......... rocks

@Pmb213 3 жыл бұрын

Lupus is the worst. I don’t know what to do. It’s taking everything from me. It’s taking everyone around me because they all think I look just fine. I’ve lost credibility at work after 60mg of prednisone made me moody and disorganized and so I’m losing my job. How will I live? How will I get the medical care I need?

@pradera02 9 жыл бұрын

Pair Biomagnetic Theraphy read about it, the medicine of the future

@ColbyLaneEisenbach 12 жыл бұрын

For those looking to connect with others who have systemic lupus, visit our website. We are dedicated to increasing awareness for autoimmune and rheumatic diseases. Find hope, share concerns, ask questions, explore treatment options, and make connections in our member forums. Increase awareness and help raise funds for autoimmune and rheumatic disease. Take a stand with us by visiting the website and subscribing to our KZfaq channel.

@astriddewi6914 18 күн бұрын

Am dying from sle, derebral lupus and vasculitis, no medicine work for me, nasty disease.

@MsMOLLYKINS 11 жыл бұрын

I was told I had ten yrs if I was lucky I am still her 2 yrs after my due expire date lol

@SiddharthSingh-up2gs 3 жыл бұрын

After 7 years. I am asking , how are you?

@Penlady5 11 жыл бұрын

Mariya Fulton, Lupus is common in women, but rare in men. This is one cruel disease, right?

@mimi16011981 12 жыл бұрын

I have lupus and its misleading to say its rare in man it isnt that rare.there is month awareness May

@angelsbutterflies6293 3 жыл бұрын

Yes May is Lupus Awareness month and may they find a cure asap and God Bless all who has this horrible disease as it is the worst and i wouldn't wish it upon anyone because nobody deserves this all. God Bless.

@philipcrawford2153 Жыл бұрын

It's more common in women than in men but it is more deadly in men than in women

@Angelalivingsoberwithl4072 5 жыл бұрын

I have Lupus too. Sending Prayers. Visit me

@fairlyhills5152 4 жыл бұрын

I'm super excited, I'm finally cured from Lupus, indeed there is a permanent cure with Herbs 🌿.

@calebvick1378 Жыл бұрын

How is andrew here in 2023?

@BanditGirl61 11 жыл бұрын

please research baking soda Its cured me So true for me Lupus and four days later drinking baking soda I am pain freee still tired a bit but pain free and inflamation is almost gone.