My Lupus Story part 1 

Its so depressing especially when no one around you understands. I feel so sad

Looking forward to the upcoming parts.

Thanks for sharing your story. I was diagnosed in the hospital while being treated for pancreatitis. My lupus effects my pancreas and brain . The body aches are unbearable and fatigue is non stop. My brain is always in a fog . Lupus has changed my life. I’m a completely different person .its harder for me because I don’t have much family support

Thank you for sharing your experiences. Someone in my life that I care deeply for was diagnosed just a few months back. I am not even certain they have it narrowed down yet to which type. I hope your videos will help me understand and assist her in this journey.

Thank you so much for sharing your story. I have an appointment with a rheumatologist in three months. I've been having similar symptoms since March. It's been quite the battle and I'm hoping to get answers by next year. Your video gives me hope, thank you again💕

Thank you for sharing you story! I was diagnosed last year, and it is interesting hearing how this impacts different people in different ways. That is so great to hear that you have such a great support system, that is so key.

Thank you for this. I’m currently in the hospital and diagnosed in the last three weeks. Lupus is completely new to me and this is the first video I’ve seen that I identify with and helped me. I’m definitely subscribing to your channel and I am pulling for you in the battle with Lupus. Thank you so much for this.

Great testimony! I was truly Blessed.

Wow it is crazy to hear your story especially being that everything you went through I just went through the week before Thanksgiving. Your symptoms, all the pain, and even how long you stayed in the hospital. I was diagnosed the day before Thanksgiving with Lupus and I am trying to find ways to handle it. I truly appreciate you sharing your experience and to see that someone went the same thing I went through. I am praying as well as subscribing to your channel.Stay blessed and Thank you!!!

Thanks so much for sharing your story...praying for you. I can relate to much of your journey as far as physical symptoms n the emotional feelings; I was diagnosed with Rheumatoid Arithitis earlier this year n I’m still trying to process everything...sharing your story n being transparent is helping so many; Thank you; Sending prayers n hugs your way...🦋💜🦋💜🙏🏾

Thanks for sharing your story. My daughter was diagnosed with Lupus several years ago and your video helps me wrap my arms around the disease. Knowledge is power and listening to you and others who share their life experiences will help me ask more questions and provide greater assistance for my daughter. Your vlog has increased my awareness and I'm looking forward to your next upload. Thanks

Thank you so much for sharing your story. I’ve been feeling the same with my lupus journey. Now I’m looking for a reheumatologist. Thanks to your video lol I know is not in my head. Especially the part when said you couldn’t walk. That happens to me all the time.

Lupus is very brutal on the body. I was diagnosed 4 yrs ago. Let me just say this...I feel your pain. Everyday I’m in pain, no energy or nothing just pain. Each day is a challenge! Thank you for sharing your video beautiful. Keep the faith and keep fighting!!! Pray there’s a cure one day!!! God bless!!!

I just listened to your video, thanks for sharing. I myself has lupus, just found out 2 or 3 weeks ago. Your video is so helpful, thank you!

You are most adorable! Thank you for sharing your story!!!

God Bless you! Sending love & prayers from New Jersey! Thank you for sharing your story! You’re a beautiful young lady! Wish you the very best!

I’m here to learn for my my little cousin💚 Thank you!!

I love your makeup, girl! You look beautiful!

Thank you so much for this video as someone else mentioned this is the wonderful thing about RU-vid is that some people really put some videos out there that are so helpful for others who are struggling with the same problems me too I have been diagnosed with lupus about four and a half years ago yet I still don't know much about lupus when I was first diagnosed with lupus it barely affected me it gave me the butterfly rashes and I had a sensitivity to Sun and I would always remain cold after seeing this video you seem so knowledgeable about lupus it makes me also want to do my research thanks girl

I’m 12 almost 13 and I have all of these symptoms and I was born with the blood marker for lupus and this video really helped me thank you💜

Thank you for your story! As someone who is going through something similar, I need some comfort that there are other people that are going through this. Been relying on my family but it's so scary.

Wow! I appreciate you sharing your story. I believe I was sick for a long time before I could get any help! It’s frustrating, you think your going crazy, am I just getting old and this is what it’s like or is something really wrong. After over a year it took took get diagnosed with SLE Lupus, fibromyalgia and carpel tunnel, it was almost a relief that there was a reason I wasn’t feeling good and it wasn’t me being lazy. I still don’t have a good rhythm yet. As I was just diagnosed, my pain is still there and some days I can’t get out of bed but I am hopeful. Again, thanks for sharing!

Thank you so much for your video. I have been suffers from fatigue and joint pain for years. Now I have the butterfly rash hair loss and other symptoms so they testing me for Lupus. I am scared so I appreciate this so much

I was diagnosed with tumid lupus between two and three years ago now and when I was diagnosed I found your video but I haven’t been able to watch it until now because I’m only starting to be able to process and except it, it has changed my lifestyle my diet and my greatest fear. Thank you so much for telling your story At this point I don’t think I would have the courage you do to share your story

My sister has been diagnosed with Lupus and I am researching ways that I can help her manage the symptoms . Ironically today is May 31st , 2020 and I am watching this video. Thank you so much for sharing your knowledge and your story!!

Hello! Yours is the 5th video I have watched since I got home from the doctor today, but the first I have commented on. I just have to tell you how incredibly well spoken and beautiful you are!!! I can't wait to check out your other videos! Ha! (I was told today that my doctor suspects Lupus and/or RA.. or possibly MS. And, so it begins.)

Thank you so much for sharing your story. ❤

You are so gorgeous and charismatic!! I was laughing through with the ambulance thing! 🤣 I got a friend going through this right now. Yesterday at the gym i noticed her face was red and just working out she felt a burning sensation like coals. It scared me. And today she texted me saying her face was so stiff that she couldnt smile or open her eyes. Her blood results came back abnormal so...yeah :/! Praying for her and you too lovely! 😊

hey thank you for share just got diagnosed 3 months ago and still don't know how to deal with it but thank you for sharing your story.

You are so beautiful. Thank you so much for sharing. It's helping me!

I just received my diagnosis. I have my 1st official Dr visit since my labs on 2/12. This has been an rollercoaster of feelings. I'm so sick of the joint and muscle pains.

When you said the prednisone had you like the incredible HULK you brought me back to 2014 when they infused me to treat it more "aggressively". Now I know I have to tell my story, I've been praying and seeing your video just confirmed it.. God Bless You😘

S/o Doc!! 🤫😉 Thanks for not saying her name. Glad you're looking well. Proud of you ALWAYS. 🙏🏾💜

Thanks for sharing your story. Lupis is a struggle everyday. Everybody does say you look okay. But don't feel okay. Haveing a painful lupus day

Thanks for sharing. I had so many of the same symptoms before being diagnosed and avoided the doctors, no insurance and fear then i began passing out the weight loss ( omg i looked like death) but i was placed with an excellent RA doctor who is amazed i am not in dire pain or can function as i do. Thank God

I have scleroderma and I ignored the symptoms as well until one day I got to work in 2013 and passed out because my bp was so high both of these diseases are horrible and they are sooooooo similar I pray one day they can find a cure and thanks for sharing your story❤

Hi there .. hope you are doing good ...soft hugs 🤗

Hi there I wanted to say I give you a lot of credit for posting this video it's amazing to see the strength and courage and positivity you have your an amazing person live your life to the fullest never give up on your hopes and dreams and no matter how hard life can seem sometimes just always remember God gave you this life because your strong enough to live it I hope you have many more blessed days to come your way you have definetly inspired me and others a lot 🤗♥️📿🙏🏻💪🎗

I two also have lupus same year everything this is a hard thing to except in life specially u never had it or in your family thank God for my friends and family and kids

Nice to hear, really

That Tin man " I need some oil" metaphor is the truth lol. Made me laugh. I know that pain.😣

I was diagnosed with Lupus nephritis in 2018 with 17 years so it was really hard for me but before my diagnosis the doctors thought it is cancer🤷🏼‍♀️ I feel with you and wish you the best!

Thank you for sharing your story..

Thanks for your story. It's so nice to know I'm not alone☹️😉

Your story sounds so much like mine. I have SLE. In the beginning I just thought this was what getting older feels like. 😆 I had just turned 30

I was diagnosed with lupus 5 years ago & it’s so strange because it took a year and a half to figure out what the hell was wrong with me. After being to about 1001 specialists, as a last resort, I was FINALLY referred to a rheumatologist... and when she saw me she told me my levels were sky high, and that they must have been high for awhile. I don’t understand how none of these other specialists didn’t notice something was massively imbalanced in my body?! Now I have permanent joint, bone, and organ damage

Thank you for sharing your story.

Thanks for sharing , after three years I'm still trying to get all the take all this in .

Thank you sharing this video.. just got diagnosed in June .. Having a difficult time

You Look BEAUTIFUL !!! BTW!!❤❤❤❤IM About to be diagnosed with it

Sorry to hear that my dear,,,god bless you always😘😘😘😘😘😘

I have aching, rushing on my abdominal, brain fog issues many others. Recently also diagnosed with temporal seizures now on meds for that. Have Functional neurological disorder. Also had MRI done found a spot on my lung waiting to see oncologist to have biopsy of that. Keep strong everyone. I wish this on no one.

I Had two strokes lupus showed in my labs because clots caused my strokes. Im cold alot. Aches pains. Spike fever out of the blue. Fatigued every day. Major weight loss in short time period. Severely sweat. Many other issues. I dont wish this on anyone. My white red platlet count is low. Waiting to see a hemotologist for recommended treatment. Im a mess. Your blogs help me keep them coming

Damn I think I have it. I am familiar with all these symptoms. Mannn I need to go find out for sure

It tries to take control over you. Takes YOU away from YOU.. It's not a friend... not at all. For a second there it made me feel like a monster. An ugly LAZY monster. And you try and fight it. You try and you try and you try. But it takes a part of you. It transforms you into this other person. I feel like I can now love my family more, being grateful it's me and not them.

You’re so beautiful!! ❤️

Preach!!! 99% of the symptoms plus ANA labs are like 1:2156.... awaiting the final results of AVISA 5 more days.... I'm a nurse and pretty much quite sure.... kicking my own butt for ignoring the symptoms while caring for everyone else... but God.... thanks for sharing- "tin man" were my exact words!!!!!

Great video! Thank you for sharing your journey with the world💜 Your skin is amazing!! What do you use if you don’t mind me asking??

this helped me so much

you are beautiful,with a great spirit God bless you

God bless every person who dealing with this even Michael Jackson had lupus u try to keep a strong mind and a good feeling on life and yourself

I was diagnosed on November 19, 1999. I had all of the same symptoms and today somehow your video popped up. I have lupus nephritis also and I’m on a host of meds. for just about everything still. My lupus still isn’t well controlled. I was good for 1 week, I went into remission, and now I’m still very, very sick. God is an awesome God though.

Wow you are so pretty!

Omg I Finally found someone with Lupus. I was Just diagnosed 2 month's ago

Im so sorry to hear this. I also think i have it i started having seizures last year n January when i have my menstrual and im very moody and aggravated.

Nice to listen to

I’m getting tested for lupus. They suspected ms but the tests came back negative thank god. Two of my aunts have lupus so now they suspect that. I have a lot of tbeclassic symptoms such as joint pain and rashes. :/ thanks for making this video, I hope you’re doing well! 💕❤️

Been having some weird symptoms was in the ER with low wbc they never tested me for lupus .

My name is Bianca, too. I also suffer from Lupus/SLE/Lupus Nephritis. I was diagnosed when I was 17.

I felt like charlie brown too when they told me.

There are so many parts to the lupus story... I was diagnosed in 2011.

I have Lupus as well and I’m just starting this Channel 🥰

Hi! Thank you so much for posting this! I have lot of your symptoms! I was wondering what made ER to see a doctor Was your ANA positive at the time or when you did get diagnosed ? I’m wondering cause my ANA was negative but lots of my blood work show inflammation. I had a ER tell me the same thing and he thinks it can be lupus to see the rheumatologist

My neighbor, my friend passed away last Tuesday from lupus complications. She had many syptoms...rash, joint pains, and them low white cell count. She had to avoid the sun. She had it very bad. She develop infections.

Thanks for sharing

Thanks for this Video, I am going through the same thing The pain, sweats, joints locking up extremely fatigued rash from the sun I’m currently going through testing my Docs are leaning towards RA but I think it’s Lupus I may need to get a second opinion

Thank you!

I was diagnosed lupus 1 and half year back. I'm having a lot of skin problems these days. What should I do ? I have no idea. Although the medication are treating my pain but not my skin problems.

Hi, do you tested also for EBV? bcs there is some correlations in papers studies between EBV being the cause of pathogenesis of SLE (lupus)

Idk if I have lupus, ms, fibromyalgia... But something is wrong with me! Thank you for sharing!

Thank you

Mine started that i have mild carpal tunnel syndrome..At this point i am still not officially diagnosed that i have lupus but my ANA titer test was positive 1:40 speckled... i’m still going through a lot of test... seeing 4 doctors including my rheumatologist... going through this is so stressful..at times i woke up and i feel so tired, muscles and joints aching

I dealt with your initial symptoms as a child. Deep in the bone ache till i was in fetus form rocking. Had one incident in high school where my elbow swelled up pretty bad but that was in the late 80s early 90s. They just put it in a sling and excused me from gym till it went down. Was healthy and active as an adult. Had my second child at age 35 and my body went ballistic. Waking with hands and feet swoll like baseball mitts hurt to open and close hands. Over an hour to get out of bed and still hurting. Every joint just hurt. While pregnant I stayed in flipflops and socks at work. After I had my son I was still flared...exhausted, toes locking up in joint running bk n forth to ER.. just out of sorts. Been to 4 Rheumys and test show ANA positive but titer not high enough to diagnose. Sedimentation etc reflects my swelling but this rheumy diagnosed me with sero-negative rheumatoid arthritis. Prior to meds I also had hives. Diagnoses as a child w eczema. Hair fell out but recovered with zetar shampoo. Dont know. Dont want lupus...dont want to be sick but it's very apparent. Trying to stick with this rheumy bc I know they need time to figure things out but it's been 7 yrs w her. Last 4 yrs neurological issues as well. Unstable gait, memory bad, tremors, and migraines w/trimmings. Listen to your bodies guys. I want to seek Nother doctor but with all the meds I'm on it seems like things are masked and side effects from meds etc. Dont know what to do. Thanks for your story and God Bless!

I was diagnosed this month with Lupus. The Dr was very unprofessional. She put me on meds while I had only joint pain, after side effects(9days) she took me off of the meds. Causing my first HORRIBLE flare. That was 2 weeks ago. I and just getting a tad better but I was suffering man. When I called to leave a message for an emergency appt she never called me back! 5 days later I had to call her after hours and get a message back. Her front office people are worse! I will be place on hold for 20 min then hung up on. Or I’ll call n get a machine saying the dr isn’t taking calls. It’s the worst. I have three babies but 1 is over the age of 18. All I keep thinking about is them. When I was told it’s like they told me I was dying. I’m new to all this and don’t know what to do. 😩 i get short winded just getting up to use the restroom. Which freaks me out (🙋🏻‍♀️ anxiety person ) . I wanna know if that ever goes away? Can ppl with lupus really enjoy life ?

Hey just seeing this I just had labs done my sed rate was high, positive ANA, I have been having the same symptoms waiting to see my doctor again

I have the same issue with my fingers getting stuck. I have positive anti smiths and and anti rnp antibodies, amp positive, vitamin d deficiency. I’ve got so many of the symptoms and my rheumatologist is telling me my vitiligo is causing the anti smith and rnp antibodies to be positive. I can not find that to be true. I’m constantly bed ridden with fatigue and on a bad day sometimes I have no energy to even stand or walk. I physically feel like I can’t. Not sure if I should just be patient with my doctor who is evasive when I try to ask her what she thinks. Don’t know if I should wait it out with her or see another rheumatologist.

Hi, it’s been almost a year, I’ve been to number of doctors, specialists, and hospitals. I think I’ve lupus, no one could diagnose me yet! I’ve an appointment with rheumatologist in 9 months!!!! But I’m in a daily pain!!! I live in Indiana, I wonder if i can contact you. I have ANA positive btw, joints pain, chronic fatigue, numbness, burning, high pressure and other symptoms since 2 years but developing with time.

My doctor just called me yesterday and told me my a.n.a is positive. Now i have to see a rheumatologistist soon. My joints hurt and my hair is falling out. Im so depressed i dont know much about lupus. Im so scared!

I’ve been having some symptoms I have rashes , I’m also having issues with my kidneys I’ve had protein in my urine also having a lot of joint pain and low white blood cells just seem like it veryhard to detect

see twice in my life in 1996 and in 2006 doctors told me we know your body is fighting something but we dont know what, why are these things so hard to diagnose?

Thank you ‼️‼️‼️

You are such a beauty! Thanks a lot for sharing your story. I was wondering what meds do you take now and how often you experience flare ups? Also, is sunbathing okay for you? Please, let me know 💕

this is scary close to what i have dealt with. I am searching for whats wrong but its been at least 2 years. for me it started with charlie horses and now I am just stiff an sore all the time. its like my muscles over react to anything I do. If I lift 5 lbs once its like I lifted 10 lbs 20 times with the soreness afterwards. mental stress makes it worse too. I used to be very active and its like I suddenly slammed into a brick wall and everything I do hurts. a coworker with lupus said it sounds like lupus to her but so far nothing shows in the tests.

I also Lupus patient for 10 years.

Thank you for this video i know what i to do now to my girlfriend because she has a lupus too i feel so sad that i saw her struggling for that illness. I hope you do well now godbless to you

I wish you healing and health. You are gorgeous what the name of the blusher you used ,thank you .

God bless you 🙏🏾❤️

omg same symptoms let me make this appointment 😣

what song is it in ur intro? the piano song is rly nice :)

I have been diagnosed with SLE and LA and discord lupus. Been having it for years and the LA causes me blood clots. Finally found a Rheumatologist and prescribed me plaquenil just last week. I do have bad arthritis in both shoulders and ankle. I do have diabetes and it's way high all the time even me taking shots or pills. So with that said I can't take steroids due to blood sugar and can't nsaid due to me taking blood thinners. So I hurt all the time and fatigue so I don't know what else I need to do.