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  • Oh you poor thing. I feel so bad for you! I will pray you get better or at least have a normal life. Big big hugs, Tori

  • My poor girl! I am so sorry these steroids are hitting you so very hard! I hope you can get off of them and live somewhat a 'normal' life.  Hugs!!!!

  • take vitamin d3 - research - it will help you - doctors wont tell y ou - be smart - you tube - d3 - start on 5,000 iu  - get to 10,000iu. kyour blood levels should be 60 + IF YOU DON'T TAKE YOUR D3 - YOU WILL NOT SURVIVE LONG.

  • you are so wonderful i was like that the same way you are went through the same challenges and i am doing better now... i had to go through so so many meds and did chemo and chemo helped me A LOT! i thank God everyday for giving me another change to be here with my daughter...I really hope you get better.. xoxo

  • i'm so sorry michelle stay strong..... I hope you are seeing results with your antibiotic therapy...I'm also recently diagnosed with a connective tissue disorder most likely MS. I refuse to take steroids. I've told doctors unless its life or death i'm not taking them... Prayers going your way!!

  • you are a strong lady. i have been in and out of ER. i was in so much pain i could not control it, when the doctor told me i had to so back to steroids i cried likei was going to die. i know all the side affects from all meds cuz i was once one 20. i am now on maybe 7. thank you for saying that predisone is evil with our looks but it does kinda help with the sickness. peace and keep healthy

  • I have had SLE Lupus since I was 13 and lost my kidneys from it at 16. I have had 2 kidney transplants since and I am 38 now. Luckily I am doing pretty good but am still on steroids and will be for the rest of my life, every day is a struggle but keep your chin up.I will say a prayer for you.

  • My daughter is 45 and was diagnosed with Pulmonary Fibrosis, Scleroderma, and Raynauds. She just found out yesterday that she does not qualify for a double lung transplant because of the scleroderma. She however, does not have all the symptoms of schleroderma so her doctor won't make that diagnosis of either schleroderma or sjogrens. She has been given 1-2 years my e-mail address is ander164@q.com if anyone wants to comment. Pray for us.

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  • God Bless you sweetheart for doing this Video.

  • what syndrome are you talking about? you didn't list it in your tags but you listed michael jackson. wtf?

  • you still look beautiful! don't cry. i am having a lot of these symptoms so i looked up some lupus videos. i have been having a bunch of problems and it seems like they all line up with lupus. because i'm on medicaid i have to wait a month to see a rheumatologist. i had a test a long time ago but it was negative. can the test come up negative? i have been having weird pain issues for years. i have gained so much weight as it is would hate to do steroids. ugh god bless you!

  • I understand about feeling ok one minute and very sick the next, and people don't understand that. Doctors don't always understand that. I plan to go out to lunch (can't always but LOVE it when I can) and then can't go because I'm sick, and that's after resting up for DAYS just so I can have a nice lunch with family. But at least I can still do it. and u can still communicate too. I hope u will be my friend...

  • I have sle too and I think u look beautiful. Yes, it is hard. But u r still here, just like me.

  • I totally understand what you are going through. i have totally sunk into a depression where don't even leave my room. I lost all my hair, it is so hard. Especially when your family doesn't understand. I have gained alot of weight and I try to stay strong. I can go to sleep and wake up crying from being in pain. I had so many blisters on my body from head to toe. It is so hard especially when your use to doing things for your self and cant. i will Pray for you.

  • love u... keep strong... i am going through alot as well, i understand what u are going through.... just keep god close to u

  • Hi Michellemim, Thanks for sharing your story. My cousin has lupus. Stay strong. May God bless you abundantly. Your testimony means a lot. Thanks.

  • I am sorry, I hope and pray that you get better. I too have connective tissue disease. It is very difficult; people don't understand just how difficult it is. We have to be strong; not only for ourselves, but for our families. They just don't understand how bad you feel and that you can't do what you used to. It is a battle everyday. I am frieghtened for the future. I don't even see myself in the mirror. I understand sweet heart. Pray for remmision!!

  • your a lovely lady thank you for the videos

  • Steriods or not you are a beautiful person inside and out. Thankyou for sharing your experience.

    

  • You're beautiful! My friend and I watched this and one of your previous video's in it's entirety because we know a co-worker suffering the same. We are now way more empathetic toward her situation thanks to you. God bless you for providing your information. Best wishes.

  • Michelle my sister has lupus and she's been in and out of the hospital too many times we seen her in pain with all the meds she's just like you...God bless you and everyone with lupus thanks for sharing you're not alone trust God...

  • I was diagnosed with Scleraderma 4 trs ago.Please contact DR. Richard Burt @ Northwesertern Hospital in Chicago.He gave me a stem cell transplant and it completely turned the disease around.Just had my 3 yr.check-up and the disease is gone.Many of his videos on You Tube.He deals w/all autoimune diseases.He may be able to help you.Much love to you Cindy

  • i pray for your full healing. My mother had Lupus and this was the exact thing she experienced with the steroids but after 4 years she went into remission from the Lupus but the affects of the steroids had gone to the bones. This was in the 70's i hope technology is better with the administration of these drugs today. I want you to keep fighting and praying i am praying with you.

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  • Sorry my finger slipped.... Your grace and compassion for others shines through. Never ever apologize for crying! Keep hanging in there and always remember that you have a lot of people out here in cyber space that love you and are cheering for you! Better days are ahead.

  • Michelle, you are an inspiration to anyone dealing with a chronic illness. Your grace and compassion for others shines thr

  • God bless you, Michelle. I'm just diagnosed with autoimmune connective tissue disease, and have had 4 positive tests for lupus and 1 false positive. I am just starting this awful journey. You are a hero to me. Thank you for making these videos, and you will be in my prayers. You are beautiful inside and out.

  • I Love you Michelle

    Steffie

  • My heart goes out you, I have 3 autoimmune diseases and mixed connective disease. I am currently on Remicade infusions and methotrexate, as well as 7 other prescriptions-I do not use steroids. I have not read all the comments, so forgive me if I tell you something already know-But, The Biologic medication are the best treatments-they do not treat symptoms-they target the cause by suppressing the immune system. I pray that you find the best treatments for your conditions-God Bless :)

  • Hey Michelle one of my Friend had Lupus too and know she is ok. Some body recommed her (Spore of Ganoderma) You can try it. find out what is (GANODERMA)

    If you need more informacion let me know. (lopezo589@yahoo.com)

  • I have to take steroids too and it sucks sucks sucks.. If you dont have a moon face, you lose your hair from the methotrexate.. My reg dr not my rheumy gave me water pills ( aka blood pressure meds yesterday) just to make the swelling go down.. IT SUCKS

  • be encouraged ...my mom has been in remission for years now. I have discoid lupus too. But, God is able.

  • Think of you often and sending you gentle hugs. When you can post another video so we can know how you are doing.

  • I am so sorry. I too have Lupus & have been thru what you have been thru. I went thru 2 years of chemo. for my left kidney. I will keep you in my prayers.

  • Just wanted you to know that we are still out here and thinking of you everyday and you are always in our prayers. I have what I think is lupus guilt. I have lupus and suffer in many ways but I have never been as ill as I have seen you yet you still post videos and try to get the word out about this disease. I am so proud of you and hope that I might be as great of a voice for this cause as you are someday. Love to you and your family sweetie:)

  • u still look great....

  • haay i have steriods to. and i know its hard.

    you look like a verry strong woman ! xx elisabeth from the netherlands

  • Hi Michelle. I know there is nothing I can really say that will make things better or take away your pain, but I just want you to know that although I am just another person on the internet and we have never met or talked before...I care.

  • Thank you for sharing your story. God bless you.

  • Sweetheart? Please be brave, and do not let the doctors make you into a professional, or life-long, victim? I see no doctors anymore. I am almost fifty seven. Look at my latest video? Or see me at forty-three, by searching Stout Theremin. Doctors feed people anti-inflammatory steroids, with terribly mixed results. These drugs will kill, even more surely than the natural problems you deal with. There are other ways, perhaps, than steroids. You'd have to "wean" off of them, under MD care...

  • Thumbs up for u, get well soon! ;)

  • Hi Michelle, Thinking and praying for you. I know it is hard for you to post but please let us know hoe you are doing. Gentle hugs to you!

  • I really admire you, you can be proud of yourself for all the strenght you have!

    I didn't watch all of your videos, so please forgive me if you already told it in one of them, but do you get some kind of psychological treatment/help? My aunt is a psychotherapist who works with people with autoimmune diseases and apparently there can be very positive effects on the treatment when there is a parallel psychotherapy as well.. every disease of the body is a disease of the soul. Wish you all the best!

  • Hi there. I just got done watching your video and I cried. My heart goes out to you! I will try and make this short. I had guillan-barre at the age of 26 and also bell's palsy. I'm now 48 and have the lupus symptoms and also had a negative reading on my ana test. That was a year ago and now I have the symptoms again. Have you tried any kind of natural products to help you? God bless you and I pray for a full recovery for you.

  • so sorry to hear all you are going threw , I have seen few people make video of how they cured them self with raw foods this is the video on utube ( Lupus cure and healing from autoimmune diseases EP.1 (HD) ) dont know if this will help , you are beautiful soul , God bless you

  • Thinking of you and sending healing thoughts!

  • I pray that you get better you are a beautiful person who is strong and kind god bless you

  • michelle i will be praying for you so God helps you. I hve lupus to and i understand its really hard.

  • hugs to you Michelle, thank you for doing this video I know it's a big effort for you xx

  • You are such a strong and beautiful person! I want you to know that u are not alone! after all you been through you remain strong and your amazing strength gives me strength.. I will praying to you to starrt getting better! much love!

  • Hi Michele ... Just here with Smile & Hugs with Love for you ... My sis passed away from this horrible disease ... Have you thought of stem cell treatments ??? ... Much Love, Sweety ... :)

  • your beautiful dont worry i'll be praying for you. I have Lupus too I understand

  • hey how are you doing? my sister is not so good but she has been given a new drug which is meant to be one of the best. hope you are doing ok.

  • Please continue to post. Please post as you get better ok? I would love to see some good news. I have connective tissue disease as well

  • Hi hun,

    I pray that you are getting some relief from the awful pain of this disease... Keep us updated on how you are doing. I miss your videos .. you are an inspiration.

    xo

  • Keep fighing Michelle. I hope that you're doing better :)

  • Hi Michelle,

    I hope that you're feeling better. I'm saying prayers for you :) I hope you can post to let us all know how you're doing.

    HUGSXXXX

  • I have just found you here on Youtube. You are so brave and such an inspiration. I can relate to everything you are saying and it's amazing to hear someone talk of going through it too. Thank you so much

  • I have been waking at night with siezures too !I guess they say it comes with the secondary diseases triggered by autoimmune diseases!We need to pray for us all,and hope medical science gets a grip on this!!Any one of us can have a stroke of the brain or heart without notice!!Bless Michelle for her vids.,and hope she improves!Her videos have been a great contribution to us all!!I will not give up hope!!!Love kitty!!

  • God bless you Michellemim, I pray that you're doing better. You touched my heart and I hope that you start to feel better.

  • I have RA but I wanted to know more about scleroderma you see, I just spent 4 days in the hospital after my husband found me thrashing about in my bed and moaning and not responding to anybody. I had taken methlypred and was doing the high to low dose packet, I couldn't take in a breath, my muscles hurt so bad from my neck down to my thighs. I broke out in sweats several times and my blood pressure was constantly low(in about 95/55). I will see my rhuemy doc tomorrow for a further info

  • @ndnsaenz8689

    The same thing happeend to me, they werent sure if it was a seizure I had. Are you on Plaquenil as well? Once they took me off of that the uncontrolled movements and tics went away completely. It could have been some form of steriod withdrawal too, but I am not a dr. I hope you are feeling better and that they can figure this out to get you well. But if you are on Plaquenil, one of the bad adverse reactions says "it can cause twitching and uncontrolled movements".

  • @ILUVHORSES1981 I was on Planquenil about 2 yrs ago, it worked so good and I felt like there was nothing wrong with me. But after 4 months of taking it, I had the worst side effect I have ever had! I felt like somebody threw me into a pile of fiberglass insulation!! So I stopped it and told my rheumy doc and he agreed o discontinue it, but I scratch like crazy for days! At the moment I am on arava and humira, and will start PT tomorrow for management of my muscle fatigue and pains.

  • Michelle...Hope the new year has brought some improvement in your health. I think of you so often and wonder how you doing. I know it is very difficult for you to post, but I hope you will be able to send us a short, quick update very soon. I THINK ALL OF US CAN SAY WE WRE VERY CONCERNED FOR YOU.

    LOVING, GENTLE HUGS

  • Today i came across this video, and already watched your before and after vid. You give me hope for the human race. Too many ppl would not share their most challenging life experiences such as this. Thank you very much for all your work.

    You look so uncomfortable being a prisoner in your own body. I want you to know you are loved, valued, and make a difference. Peace and lots of love to you and yours.

  • I just happened across your video. I want to tell you that you are so very brave and i will pray for you. There are no words really that I could write that can describe how I feel about your situation.

    God bless you

  • Praying that you are feeling a little better. Think of you often. HUGS!

  • Michelle you are so very loved and have so many behind you praying so very hard...I miss your videos...and you are such an advocate...please don't stop! We are all worried and care very much for you...so please hang in their and fight like a warrior so you will win this horrible battle and put this disease to rest for a while...hopes, love, and prayers...

  • Steroids are so horrible!!! I remember the swelling and the moonface. You're never the same after that. I lost all the weight when they reduced the prednisone, but I still remember. You have my support and I hope you feel better soon. Don't stress yourself too much and hang in there.

    Chandra

  • Michelle, Its Jayne..I've left you a couple messages here and there between your facebook and youtube pages..I'm so glad to hear from you. However, I must admit it brought me to tears to see what the steroids have done to you, only because I can COMPLETELY Empathize with you. I too have blown up from being on steroids non stop for 10 years. I'm not a high dose as you are right now but from being on them constantly, I've accumulated a massive amount of weight and cushings too. Your not alone! xo

  • Michelle, Its Jayne..I've left you a couple messages here and there between your facebook and youtube pages..I'm so glad to hear from you. However, I must admit it brought me to tears to see what the steroids have done to you, only because I can COMPLETELY Empathize with you. I too have blown up from being on steroids non stop for 10 years. I'm not a high dose as you are right now but from being on them constantly, I've accumulated a massive amount of weight and cushings too. Your not alone! xox

  • I'm in the process of getting diagnosed with Lupus. I don't know what else to say other than I am so sorry this is happening to you. *hugs*

  • hope you get better soon.

  • @michellemlm I tried to find you on facebook and couldn't. I have been sick for 5 months straight and would love to ask u some questions if I could. This sickness is not typical to any of my flare ups.

  • Thank you for sharing Michelle, it is so exhausting being able to do just about anything, and I just want to say thank you from the bottom of my heart. You are in my prayers and may God give you much needed blessings sweets. Gentle hugs to you :-)

  • michelle its amy and im glad to see you again..i have been in your shoes with the steroid induced cushings..its no fun at all..im sorry to hear all the things that have gone on.. your always on my mind and i feel bad i havent kept better touch with you..but take it easy

  • I am so sorry you are suffering. I know God loves you and cares about you. I wish you weren't suffering like this. God bless you. Mandie

  • Michelle never apologize you have taught me so much about lupus. Steroids has made it's mark on me as well so I understand how you feel. But we have to have them. I say I have a love/hate relationship with steroids. They may hide our outer beauty but not our inner. You are a beautiful person with courage and strength. Thanks to your work on here you have given me and many others hope and understanding while battling this horrible disease. Hugs and love sent your way.

  • Michelle- Thank you for this post...I was on 60 Mg of Prednisone every day for 2 years then it took another to Taper down. I literally blew up overnight. Your emotions are very validated. I was very depressed and cried 90% of my days and slept about 1 hour a day for a year. I have 4 autoimmune diseases, LEMS (Neuromuscular) is the big one,I can barely walk.After getting Steroid Induced Diabetes, I started tapering, but it took about 2 years.I wish you the best and please know you are not alone!

  • Hi Michelle... I joined a few months ago & watched the 2 videos prior to this one. SInce I watched this one I have gone back & watched all your videos. Wow, what a journey you have been on. Thank you for all you honesty & hard work at educating all of us of the effects of lupus & all connective tissue disorders. I do not have lupus but do suffer with RA & fibromyalgia & take a lot of the same drugs you have spoken about. I am truly sorry you are suffering so bad. You're in my prayers!

  • hey michelle its victor. i've been trying to get a hold of you, but never got through. i'm here praying for you sis. rest up, and please do not over do it. i will call steve to cheak up on you today after school. stay strong sis.

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  • Thank you so much for the update sweetie but if you aren't feeling up to making videos we will all understand. I am so proud of you for everything you do for all of us and to spread awareness even when you feel so awful. We will be here no matter if it's days between or months between videos. Love you and hoping things start to get better soon:)

  • Michellemlm,

    Please you go to Gerson.org look into the gerson therepy. Im on it girl and Medical Marijauna and it helps so much I started losing weight and I feel great just look it up please Im trying to save your life.

  • I really appreciate you putting this information out for us...

    Stay strong friend.

  • I recently went to a friend's wedding and there were several of my really good friends from church, that I hadn't seen in a while, in attendance. Not a single one recognized me. I had to tell them my name. ... the confusion on their faces was heartbreaking. My heart broke for you when you said your father didn't recognize you. That happened to me once ... but my mother recognized me, and told him who I was. The pain and confusion on his face is not something I ever want to see again. ~cre8

  • THank you so much for checking in! I love your video updates. I was recently hospitalized for PE's and DVT's as well. I also suffer from Lupus, Sjogrens, RA, Fibro, RLS, APS (Hughes), Hashimoto's and well... you know... I call it the "Party Package" ;-) ... you are right Lupus likes to travel in packs... wolf packs. We just keep fighting and dealing with it one thing at a time, one minute at a time. I am sending prayers and good thoughts for a remission and/or cure for you. ~cre8

  • Michelle you are an angel send to us to have the courage to continue with our lives. God bless you. Thank you.

  • So happy to finally see you, I've missed so much. I have wondered how you were doing. The Lord is so good, He has kept you. Thank you very much for your posting. And, I agree with the other comments, you truly are still beautiful inside and out! I will continue to lift both you and your family up in prayer... I love you. Lots of gentle hugs and kisses:)

  • I am so relieved to see you do a vid. I've missed you so much. You are still beautiful, inside and out, and very brave. I was on Prednisone for a while, and thank god, I've been off of it for a month now. It made me REALLY crazy.

  • Just remember you are not alone. Stay strong and think positive.

  • I was just thinking about you and I'm glad you were able to post a vid. I sincerely hope things improve for you and you'll be able to decrease the amount of steroids you take soon. Take care :).

  • I frickin love you!

  • Michelle. I am so glad you are back. I watched all of your videos and have been worried about you over the past months of no videos from you. I do have a question about the scleroderma...you mentioned things puff out and get very red...I often get a random finger tip that puffs out, gets very hard and turns bright red. It is painful too. I have not had this in a few months now but it use to happen very frequently. Do you think this might be the same thing?

  • @rainbowbrite24 It sounds the same... If it happens again you should have the dermatologis biopsy the skin..... with it being limited to one finger may mean a circulation issue too. Keep me upated if you don't mind ok?

  • @Michellemlm Sometimes I can have two finger tips on one hand with it and one on the other hand...or three on one hand and two on the other and it last a day or two and then jumps to another finger...and then goes away for a while....I use to have it happening a lot before and after being diagnosed...but I don't think it's happened since August or Sept....my memory is bad. I will keep you updated for sure. I showed it to my rheumy and she was stumped.

  • @Michellemlm Do you have Facebook? I actually have photos of when my fingers do this on my facebook profile...or maybe I could e-mail them to you

  • @rainbowbrite24 Yes. My facebook is michellemlm. let me know if you have probs finding it. gotta stop trying to type for now but will when I can again so if you don't get a reply from me, please kow that Im readig my messages and replying when I can ok?

  • @Michellemlm Thanks Michelle. No worries. I totally understand.

  • @Michellemlm I also have a vlog...I try to make videos as often as I can...my very first few videos give my story of how I came to be diagnosed with Lupus and I think I show the photos on one of those videos too

  • I hope you get better hun. I have been following your videos for a while now. I have a cousin who has lupus. My prayers go out to you.

    And don't worry about the weight/swelling. You're a beautiful person either way :)

  • I was worried about you. Glad you made it thru the last hospital stay. We look like twins, gotta love those steriods. I try not to think about how different I look but its hard sometimes. I see people in a store that has not seen me in a year and they don't recognize me. I know its hurtful, more so when its family. You are an inspriation to us, you have been such a strong fighter. Hang in there.

  • YOU ARE IN MY THOUGHTS AND PRAYERS . 

  • love, michellemlm 

  • Michelle, glad to see you. I am new to you tube and ur channel. I have RA and some other diseases that can go with it. I am in alot of pain today, but wanted to say Hi and take care.

  • Michelle, glad to see you are feeling better. You are looking better than the last time I seen you. We are in the middle of a blizzard here, wish I was there!! I'm glad you blocked that moron that was commenting. I had no idea you could prevent connective tissue disease...hmmmm...thank God we have geniuses like that on Youtube to tell us what losers we are, huh? I hope he can still read our comments anyhow. Call or email me when you are up to it. I hope you can get off the steroids

  • @spicyham

    What??? Three world wars? In what video game? If you had half a brain, you would know that immune system disorders and connective tissues disorders are NOT something you can prevent. I clicked on your name and read some of your posts. Wow, how many times do you need to use the word "retarded", along with many four letter words? Shows just how intelligent you are, doesn't it?

  • @spicyham

    What??? Three world wars? In what video game? If you had half a brain, you would know that immune system disorders and connective tissues disorders are NOT something you can prevent. I clicked on your name and read some of your posts. Wow, how many times do you need to use the word "retarded"? Shows just how intelligent you are, doesn't it?

  • Very nice to see you, sad to see you cry,you are beutifull...steroids or not... hang in there girl , and dont feel bad for not answering the mails, i think people understand and if they dont, their bad.

    (gentle) Hugs

    Erika

  • It's so good to see you again. Thank you for posting this video. I'm sorry things have been so tough for you. I will keep you in my thoughts and prayers. Things here are ok at the moment. I have my ups and downs. Nothing I can't deal with though. Thanks for asking how I was doing. Sending you my Love and Light.

  • You are a beautiful person and remarkably brave. As my daughter tells me " the hell with the swelling- I'm just glad to be here with you" I kNOW how hard this is. The pic on my account is the pre- steroid.

  • @SpicyHam Funny. I actually joke with my family and caretakers about that, saying I look like Princess Pheona or a female Shrek. With your thougtless attitude though, I will say prayers for you to never be faced with something like this as I doubt you could handle such a thing.

  • @Michellemlm I handled 3 World Wars on my shoulder all on my own. You weakling.

  • @Michellemlm You go girl! You are my inspiration in this new journey of mine with Lupus. I've had a similar comment on my vlog...someone said man the harpoons. People are so ignorant.

  • @SpicyHam

    you are an idiot...she is suffering with a horrible disease I have Lupus too and for you to make fun of this shows your incredible incompetence. She has a puffy face due to steriods and medications she HAS to take. Think twice before you make stupid comments. This is hard enough for her as it is.

  • @ILUVHORSES1981 Actually. You are an idiot for such false judgement. Think about why she has this disease and why I don't.

    It is called prevention.

  • @SpicyHam if you're body is age 22, as it says on you're channnel, at that age what is it you think you're doing for prevention?

  • @SpicyHam Auto immune diseases cannot be prevented...for all you know you may have one lurking in your body waiting for something to trigger a first flare.

  • @ILUVHORSES1981 Thank you.  I went a head and blocked the person... its obvious they were searching the web looking to start trouble. Thank you again.

  • @Michellemlm

    You are more than welcome, its people like that that make this world a bad place sometimes but stay strong and hang in there. I am admitted in the hospital now and theythink my Lupus may have travelled to my CNS (Cental Nervous System) so they are going to do an mri and a spinal tap to see whats going on, please keep me in your prayers as I will keep you in mine..

  • @ILUVHORSES1981

    Please let me know how you are doing ok? I;m definitely keeping you in my prayers as well.

  • @Michellemlm

    I am doing better...they found out the twitching was caused by the Plaquenil, my Lupus med! So I stopped it and havent twitched since, yay! Its been a few weeks now and its great to feel somewhat normal again. The only thing though is I have had to go up on the dose of the prednisone to compensate for not taking the Plaquenil. I have good days and bad days and today I am more tired than yesterday but thats the nature of Lupus. How are you doing?

  • I don't know your history,but you are obviously not well.

    I feel for you in your situation,may things improve,God bless.

  • Don't worry about making videos, your health always comes first. I truly feel on your behalf. *sends positive vibes*

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