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Wow! What a story. Thanks for sharing this. I’m happy to hear you lived lupus-free for so long. And hopeful for you to find your way back to this soon. Yes, wait times rheumatologist appointments are crazy!! There’s a shortage in this specialty and an increase in autoimmune disorders.

Yes and completely understandable. The goal is to get some thriving in there

I’m sorry to hear that you are having such pain and troubles getting a diagnosis. This no blood test confirming lupus, rather there are many factors your physician will consider. I’d encourage you to look into the criteria from the American College of Rheumatology to help guide you. As I am not a physician or medical professional, I am not comfortable giving blood test recommendations. All the best to you feeling better soon ❤

You're so welcome!❤

I am so sorry that you're having a hard time. Welcome to the lupus club-a club you never wanted to join. I had to go back and look at the video. It is a wooden statue and not a person, lol.

I have been an active person for most of my life. This has greatly helped me manage my lupus, although it can hurt me at times-like this situation. Take it as baby steps. Emptying the dishwasher is a good thing and a great accomplishment for the day!

Ugh 😩 Sorry to hear this. Welcome to the club you never wanted to join. Please let me know if I can be of help.

@@amandachay7466 You have helped already. So far, this has been the weirdest journey. I am 63yo. I never had the malar rash on my face. I have a rash down both arms(looked like thousands of chigger bites(which is what doc thought at first), a spot on my calf, spots on the back of hands and forehead. It's my joints and muscles that are killing me( that has only been a week since being taken off prednisone). Can't get into the rheumatologist until Dec, which is much better than originally 6-30-25.

update: now taking HCQ and started Saphnelo infusion treatments

Oh man-you bleed from these cracks?! Sounds painful. I do have some ridges, but it doesn’t really bother me. For this reason, I am not a good candidate for this video. Let me know if you have other suggestions

@@amandachay7466 yes, only during mega flares. I know I have autoimmune disorders-but we are in the early stages of trying to figure out exactly what and how to treat. Thanks for the reply

Thank you for sharing your story and experiences here. You’ve been through some rough times-I’m so sorry to hear this. Sounds so challenging. Have faith that you will be able to return to hiking and volunteering soon. While this journey with lupus is long, there’s hope of new medical advances in the near future for us. And if you’re feeling overwhelmed and/or hopeless, please reach out for help right away. A skilled counselor is a good first step. Be well❤

I take Plaquenil and Benlysta for my sle, along with meds for managing my neuropathy

​@@amandachay7466 thank you for responding. Can you advise what tests you did for the neuropathy?

@@Queen_OfLeos I went through a whole range of test with my neurologist, including blood test, skin biopsies, and a EEG.

@@amandachay7466 thank you for being so open. Great big hugs xxx

It’s very frustrating waiting for a diagnosis. With lupus, there are 11 criteria set by the American College of Rheumatology for a diagnosis. You need to have four to be officially diagnosed. While I can understand a dr’s hesitation, it doesn’t make it any easier on the patient! I’m sorry that this has been so stressful and you’re in pain! Hang in there and I am hopeful that you’ll get a correct diagnosis soon. ❤

Thank you for your comments. I have performed extensive research on Lupus, spoken to several rheumatologist and specialists, and read multiple clinical trials and books as for research on my book on Lupus. Yes, people can go into remission, but the majority struggle with even achieving this. Even with remission, lupus is still considered not cured. It’s a lifelong disease.

Just check out her videos ( also she s having Wednesday wellness live at 20:30 pm Uk time)when you ll have time , people on the 6 weeks recovery are not struggling anymore with Lupus. Also dr Brook Goldner is free of lupus since 18 years now ❤

Sorry to hear to hear this! Welcome to the club... that you never wanted to join.

Thank you💕 much appreciated

Much appreciated! Thanks 🙏

Stephanie… I’m so sorry that journey has taken so long. And the doctor who medically gaslit you-jerk. Hoping that having an official diagnosis helps you move forward ❤

@@amandachay7466 I have very good care now. One of my doctors complimented me on how well I stay on top of my health even with so many difficulties. It is hard. I have flares. But good care makes has helped me to thrive outside of lupus and Sjogrens.

12 years?! That’s a long time to wait for a diagnosis! I can relate to so much of this. ✋I’ve had so many rounds of strep throat and scarlet fever as a kid too. How are you doing today?

I wish! It’s something that all is us are hoping and praying for ❤

Yes I am. Thank you for asking. Hope you’re well too ❤

Appreciate your comments:) We are twins-SLE, Sjogrens, and hydroxychloroquine. Good for you to listen to your body and know that something was wrong. Yeah, I can relate to the challenge of medical professionals not getting the full picture. That's why you have to be the best advocate you can be and I suspect that you are doing just this. And to bring menopause into the mix-agrhhhhh! I am not totally there, but definitely feel like that could be a murky mix! Saddens me that you feel alone, but I understand at the same time. I have found a few lupus friends initially on social media, but we now we text and call back and forth. Makes life much easier! I want this for you too.

Lupus & Sjogrens twins! Thank you for your supportive reply, so warm and caring. Within the autoimmune community there has been much support because we can empathise through common experiences shared. My next challenge among many is managing the warmer months and taking care of my sensitive skin especially my scalp. I have recently joined an organisation here in the UK and have met a lovely group of women mainly with Sjogrens. As I was diagnosed in Oct - I’m still very much at the beginning of this journey of how to manage it. Although like many it takes a long time to be diagnosed. I have a sibling with SS as we call it in the UK. I take lots of supplements which definitely help 😊

Yay for you finding some UK friends! Life is easier with them:)

Lol, yes! Takes feeling bad with lupus to the next level

Ugh, I’m sorry to hear this! Stupid lupus… It’s great that you’re educating yourself on this disease. I’ve been formally diagnosed correctly for a few years, but incorrectly for a decade.

@@amandachay7466 ; Yes my fiance is 27 yrs she was diagnose at 24

Yes, it does. I've been on it for over 1.5 years and really noticed a difference when I had to go off it for two weeks when I had covid. Are you starting on Benlysta too?

Hi there! Welcome to the lupus club :/ I’d recommend calling your rheumatologist or going in for a visit to get clarification on your symptoms. While it seems that lupus is to blame for so much, I’m no expert here. Hope you get better soon❤

Oh man, what a struggle you've gone through so far. I'm glad you're figuring some of this out. Check out my video on lupus symptoms and diagnose-or read that book:) to see how you match up when it comes to symptoms. My first rheumatologist kept waiting for my ANA to be positive before she sent me off to a lupus specialist, but I had so many other symptoms that she shouldn't have waited so long. But I didn't know this then. Hang in there friend!

The waiting is so hard, right?! I’ll be thinking of you next week. Let me know how it goes.

Thank you. I will. Hugs

Thank you. I will. Hugs

I love that you're my new girlfriend Jojo!! Thank you SO much. I also love that you have fab husband supporting you on this journey of SLE and sjogren's. I'm so sorry to hear about you feeling so crappy and for such a long time. Give yourself some time, you will recover and this is just temporary. The African proverb that comes to mind is "This too shall pass" and I use it as a mantra when my lupus is being extra jerky. I can really relate to getting sick when traveling. I want to make a video about how to stay flare-free when traveling because I think it can be done with careful planning.

@@amandachay7466 you are a inspiration. Looking forward to it.

I am a doctor. You should keep an eye on your kidney and brain functions, because involvement of these two organs means escalation Of your treatment, giving stronger immunomodulating drugs. I hope you don't reach that stage.

@@khadijahameedaldeen9614 Thanks for the medical heads up! And thanks for the comment and for following along.

UGH! I hear you pain about this cancellation. It felt lie torture for me to be in pain and wait 8 months for my current rheumatologist to see me. I’m sorry! Don’t give up hope. You will be seen and they will figure out what’s going on with you. Did you get on their cancellation list? Can you call in every day to see if any appointments have opened up?

@amandachay7466 yes I have but was told its very rare that people don't go because of the huge waiting list.

@@dianemower7422 That’s upsetting for sure! May the wait be short for you. In the meantime, take care of you the best you can.

I can understand this. Lupus can feel like a heavy chain that you put on each day. But it won’t always be like this. You are not your lupus! I feel like my lupus could change on a daily basis if I didn’t pay attention to what my body was doing and how I’m treating it.

I’m sorry to hear about your struggles!! Lupus is a hard disease to diagnose and that’s one reason why it takes an average of 5 to 7 years to receive this. I’d recommend checking out the American College of Rheumatology’s criteria for lupus. There are 11 factors and you need to have four of them for a diagnosis. Also, keep on fighting and advocating until you get an answer that makes sense to you.❤️

Awe, I’m so happy to hear this!! You are not alone!

Hi Peter. Thanks for sharing the tough lupus challenges your family is having. And both your wife and daughter? UGH, that sucks! I can relate as my daughter and I both have lupus. Kudos to you for learning more about lupus. They will greatly appreciate your support along this quest. When in doubt, be honest and ask her for guidance. “I don’t know what to say. This is all new to me. How can I best help you?” If you're in the US, I'd suggest finding a few friends on social media or a support group (maybe through Lupus Foundation of America) to talk to for both your benefits and your family as lupus impacts several single person-it's sneaky like this. Let me know if you have any specific questions that I give advice on.

@@amandachay7466 Hello, Unfortunately it's the both of them. Right now I'm trying to keep the stress level at home down as much as I can. As soon as we find a rheumatologist I'm sure we'll have a lot of questions answered. I'm sure they'll be a lot of stuff unanswered. We're going to try to take this one step at a time. Thank you for sharing your video. I honestly didn't know lupus was a thing until recently. We live in Middle Tennessee, thanks for the recommendation for finding something on social media. I haven't thought of that yet.

@@peterquirinohey what was the symptoms your wife had ? And which blood test came positive?

I have not, but I see she’s a MD who has some extra nutrition training and promotes a vegetarian/plant diet. While writing my lupus book, I found that there is no scientifically proven way to eat that’s best for lupus. This disease is so specific to the individual in how it shows up and what helps in managing symptoms. This is why I’m a huge advocate of maintaining all parts of your health through daily habits.

Hi there Taylor! It makes my heart happy to know that this video has been helpful. Harris to you learning more at your upcoming UNC appointment. I go to them as well and see Dr. Saira Sheikh. She’s a lupus rockstar⭐️

Good idea-I will work on this for the next round

My pleasure Shell!

Phew, what a journey you've been on! 🤕No wonder it takes 6 years or more to be diagnosed. I can relate to the HS mono portion and many of the symptoms you've been experiencing. I'm so glad you're on this med. It will help. But know this is a lifelong journey, so set the expectation that you won't be "all better" in a month or two. I'm here for you. Happy to chat directly because I know what a lonely space it's to be in with a lupus diagnosis.

You sound just like me, though the age ranges were a bit different for me. I'm currently at the "high d dimer levels with no explanation multiple times" and having weird urinalysis results and pain but no infection found. I also have POTS so all my symptoms until now were attributed to POTS. I'm waiting for my ANA results this week. Wish me luck! I hope you're well at the moment ❤

I also had the sores in the corners of my mouth on and off for years when I first started to show weird symptoms in my teens. Now had for about a year the rashes on palms and fingers and soles of my feet where my feet basically start peeling in patches. Diagnosed as "psoriasis"... hmmm

It's overwhelming at first, but promise it gets better. Having a supportive posse helps a lot too.

me too @shellcshells2902

I am so sorry to hear that. Sounds quite miserable. How long is your wait time until you get to see a rheumatologist? I’ve heard everything from a month for six months.

@Amanda Chay 8 mos I'm in Orlando and from the reviews people drive 2hrs away at times.

@@Amularessa Ugh, 8 months! I'm sorry to hear this. I waited about this same length for my current (awesome) rheumatologist, but I was already in the care of another one, so it was easier for me. Hopefully your PCP and Gyn can be helpful during this wait time.

Hi friend! I’m so happy that you’ve listened so closely to your body and taken the steps to help yourself manage the pain and feel better!! Proud of you.

Best daughter!

Thanks Katy! As you know, it was a labor of love.

Thank you so much Drew!