Christine Miserandino featured in Johnson & Johnson’s first Lupus video on their dedicated YouTube health channel!

 

I am honored to say I was chosen to be featured in Johnson & Johnson Network’s first Lupus video. They already have a huge catalog of informative, non branded videos on their health dedicated youtube channel… but now we can finally add Lupus to the list of health, disease and medical topics!

Learn a little bit about me, why I started butyoudontlooksick.com, the story behind “The Spoon Theory” and my life with Lupus. Hey, you even get to see my daughter and my dog! Who could ask for more!   PLEASE share the video, click “like” on youtube, share with your facebook friends etc. As I always say… the more we share… the more awareness!

 

 

©2019butyoudontlooksick.com
  • Penny

    I have 2 daughters, ages 28 and 30. Both have SLE. The youngest has suffered total kidney failure, is on dialysis and starting on transplant options. The day after we found out her kidneys failed, my oldest daughter found out she was in kidney failure due to Lupus as well. There have been other incidents along the way (too much to go into) but we found the Spoon Theory several years back and it has help us so much explaining to people the limitations of Lupus. Thanks for sharing your story with so many.

  • sheila

    Christine I also was inplanted with a mesh sling in 2006, I have been diognosed with many autoimmune deases after my inplant , There are only a couple Drs in the world that can take them out ,, They break up and cause havoc on your body , I beg you to go to TVTNO.ORG and learn more , I think you could help get the word out ,,Thank you ,,

  • Scared of doctors

    Christine I admire you so very much. You are a true inspiration. Just wanted you to check into something. I was implanted with transvaginal mesh and they are now saying that it could be a cause of lupus and many other auto immune diseases. Be careful some times these big companies want to do some P.R. That looks like they care J &J was one of the biggest leaders in this transvaginal mesh suit. They are in some huge trouble. God bless you with you and your lupus. I was diagnosed a week ago with lupus after having this mesh in three years ago. All of which I have had 7 revision surgeries to try to remove they tell me unless I’m dying its just too big of a risk to try to take any more out I was implanted with 3seperate devices 2 the size of a Kleenex tissue each and then one an inch wide by 8 inches long I was 37 when it was done . All after a specialist in Nashville, TN. Told me there was never any reason for me to have that. This Dr if you want to call him that just wanted to practice on me!

  • Carol

    Lupus and all that it brings could Gastroparesis now have been from the Lupus also ????????????

  • Angela

    Bravo to you Chiristine!! So many people are unaware of LUPUS and it’s sub-syndromes. My sister and I lost our Mom to SLE 6 years ago, she was diagnosed very late in life and suffered terribly. I get tested yearly as well as I have my sons tested, thank GOD, we all come up negative. I have been diagnosed with Degenerative Disc Disease and feel like a guinea pigs to the doctors. My sister has been diagnosed with Cushing’s, Addison’s, Sjorgen’s & Reynaud’s Syndrome and also has a Menangioma. Approximately 1 month ago, my sister (who is 5 years younger than I am, I am 50, she is 45) tested positive for LUPUS. Her rheumatologist suggested Infusion Therapy, needless to say INSURANCE COMPANIES SUCK!!! After much fighting and arguing, her insurance company has approved these treatments starting August. This is a disease that not much was known about and that many, many women suffer from. I partake in the yearly LUPUS walk and receive newsletters from the Alliance for LUPUS Research. I know my Mom is looking down on us and is proud of my sister and I as well as all the other women who have come forward to help with awareness and finding a cure!!!

  • Your a wonderful inspiration Christine!! I have ben diagnosed with SLE & Fibro & a few other illness that go along with Lupus since 1994. This is by far the most favorable sayings.. BUTYOUDONTLOOKSICK…. AWSOME!!! Maybe this blog could open my Family’s Eyes.. They have never accepted or believe that I am sick & I need help sometimes!! Even being hospitalized on & off most of my life, They just have brushed it off like oh you will get better in a few weeks.. I don’t even think they have ever researched Lupus.. It’s ben a hard & unfortunate road for me.. Please tell me I’m not the only one with a Family like this??? I have had the pleasure to have met my Love of my life 12 years ago my sweet Husband.. He has ben the only Rock for me Thank God for him! He even saved my life in 2006 I was severely sick & the dr.s here in CA. Weren’t helping me. My family didn’t give a dime to help, but thank god he did.. He sent me to Guadalajara Mecico international Hospital & they found Staphlyccocus arourous in my blood stream if I would of slept for another week they said I would of died!! On top of 5 other infections they found invading my body.. That’s just one of many times I have ben extremely sick! But like all of us with Lupus we look fine on the outside.. What will it take for my parents or siblings to understand & help.. Or just be there for me sometimes.. Desperately seeking answers????

  • Heather B.

    I have Lupus [Systemic Lupus Eurythmatosis], so thank you. Spread the word, we need more education and knowledge about this!

  • janquito

    Christine, I can see why people say you don’t look sick; you look amazing! Very pretty. I know what you mean, though, about people thinking you’re lazy, not really sick, etc. I have Fibromyalgia along with a host of other diagnosis. I appreciate all you do here and love all your spoons!

  • Joehawkins57

     I know the source of my MS. And my MCS. I worked with solvents for years unprotected and not properly trained as to the hazards of my work place by Levitz Furniture. Chemical wiped me out then misdiagnosis and medications added to the job and now I am where i am today thanks to my hard work for a ungracious employer. Also Workers Compensation is a scam people. It is so the insurance companies can get out of paying anything and the employers get away scott free. The Judges are biased and the whole system is not to help the injured! Even the DA’s are paid in a funding system that pays them to prosecute injured workers for insurance fraud but since the main contributors are the insurance companies they will not prosecute them when they commit the fraud as in my case. So if you where injured by your work environment kiss your tail end goodbye because they will not help you but will only throw you away. Your discarded flaxen as far as they are concerned. Sorry I sound this way but this happened to me and it is no joke. I figured out that even the WC Judge was part of their conspiracy to defraud me of my benefits and compensation. We went after them in Civil Court but without a trustworthy lawyer fighting for us I was declared a vexatious litigant and thrown to the way side. California justice system is corrupted! That is my heads up and the insurance companies are using this legal system as a model or jumping point to corrupt all the legal systems in all the States. That is my heads up.

    Take care.

  • Envirohawk

     For you to have all that I have learned one thing. Most of what you are saying you have is caused by Chemical Exposures. You are being loaded down with chemicals and need to detox fast. I also learned one other thing, Lupus is a trash diagnosis the medical community uses because they are too lazy to find out what causes it and how serious your environmental damage is. They avoid anything that is caused by chemicals or medications (synthetic ones). My doctor told me that Lupus is a catch all because the medical community is too lazy to really find the truth and help people. They can’t understand it so they call it Lupus. Chemicals can also cause the other conditions including diabetes. Your exposure is either in the air, water, foods, in your home. Figure it out and get rid of it. If it is the house or pesticides or herbicides or a local chemical manufacturing plant or refinery and etc. Fix it fast and detox. If you where in the Gulf War they used radioactive materials in the tank shells and bomb shells so you may have also been exposed to radiation? (I had a environmental clean up guy I ran into at Home Depot once tell me about that.) Only buy organic if it says 100% Organic according to the USDA. Anything else is a lie. Some local small time organic growers are organic but they can not afford to go through the USDA process to verify it as such. That just proves how much our government works for the large companies and not for the little guys at all including us individuals.

  • Joe Pat Hawkins

    I have MS and Diabetes and this sounds like my situation. My family does not even understand it and everyone thinks your lazy because you can not hardly do much. They have no idea how much energy everything steals from you. My wife has pretty much disowned me and I am sleeping a lot. I sleep sometimes for days at a time.Everyone says the same also. They tell me I do not look sick. I wake to pain from head to toe every day of my life now. Sometimes it takes me 2 hours just to get out of bed. Some days I can not get out of bed at all. Some days I feel full of energy but then when I do things I am wiped out for days afterwards. I use to be super physical and loved hard work. Now I can not do what I loved. I have no energy for anything hardly. Even reading wipes me out and I found out years ago that Video Games are to strenuous and exhausting to play. I played for a short time with a friend back then and was wiped out like I ran long distance for 4 to 5 hours at a fast pace. I was so weak after playing I was slurring my words. That taught me also that stress was to be avoided completely. Stress make me physically ill. So does synthetic medications of any kind.

    For pain I recently started using Medical Marijuana (MMJ) and it works for the milder pains, but the hard sharp pains still get through that easily. It does take the edge off the harder pains though. It does not increase your energy also. It is a good stress release that does not zap you of energy so it is energy neutral which works for me.

    I thank Monteal Williams for opening my eyes to this MMJ when I saw him on YouTube with Dr. Oz. It does not cure my MS and Diabetes but it helps. At least it gives me temporary relief.

    Personally I never liked Marijuana as a teenager but this new stuff acts differently than when I tried it as a teen. It doesn’t make me totally stoned but even makes me sing when I am doing small tasks and seems to actually make my mind work more and my imagination has become more imaginative again. I can even play the guitar while on this where as when I was a teen I could not even use my fingers. I was so wiped out back then. As a teen all it made me do was sleep or eat and then sleep. I hate downers. It was a downer. This new stuff is not a downer so much. Depending on which you use.

    The Sativa makes your mind expand and the Indica helps you to sleep deeply. I am getting a 1/8th of both every month now starting this month. (I recently got a MMJ referral from a physician and a card.)  I take the pain for as long as I can then I break down eventually and use it. I prefer the Indica before I go to sleep at night. I do not like using MMJ during the day but when the pain is bad I will use it.

    I am still wiped out on energy though. I try to do more physical things but then I am useless the rest of the day for anything else. Physical activity takes all those spoons in one short time period. Just writing this takes energy and I am already low on that today.

    Thank you for your blog site here! Maybe some People I know will get the picture if they read this site?

    May Jehovah God find favor on all here and bring you into a better condition as he promises in Revelations 21:1-4.

    Keep doing what is says in Matthew 6:33 and you will get there.

    Sincerely,
    Joe Pat Hawkins

  • Catmetmcg

    God Bless You for sharing with others. I have just received the news that two significant tests are positive for lupus. I pray for God’s strength to deal with this along with the fibromyalgia, diabetes, degenerative disk disease and PTSD……… I truly believe that everything happens for a reason and I know that God will go every step of the way with me. I’m glad to have seen that you have dealt with it for years. God Bless!

  • Maryellen

    God Bless you for speaking out about your chronic condition.  I do not have lupus, but I do have a very painful chronic condition I deal with everyday minute by minute basis. And most of the time “I do not look sick” and I hear that saying many times.  I try to be upbeat as much as I can but sometimes it’s very difficult!  My condition will never get better so I must live with it, finding your video was completely by chance (“He” does work in wonderous ways)! I don”t feel so alone!
    Maryellen

  • Shuhaibparis

    hi am also  sle patieant you know wer i can get good treatment for this pleas help me  .sorry my name is khadeeja from india now iam living in oman ( muscat)  if you dont mind please contact me my e mail addres plz  give me a miss call in my number  i will cal you back that time  plz note_ 00968-93050540

  • C Kelly

     thanks for sharing your story…as I person with a chronic illness there have been many times I have felt the need to tell people “that’s right my face is not injured” as I pull into a handicapped parking spot or such.Until there is some type of understanding there will always be ignorance.

  • Kathyc227

    Thank you for sharing.  My grand daughter has Lupus and is sixteen years old she was diagnosed a year and a half ago.  Her first year being diagnosed was really hard at one point she was in ICU for two weeks Aug. very scary time, and before that hospitalized for a week or so.  She is amazing!  I am so proud of the young lady she is, a trooper , keeps moving forward despite her illness.  She has just been informed she has been accepted into the National Honor Society, AMAZING!  She has dreams and goals, she is an inspiration to me.  Kathy from Long Island

  • Sharing “The Spoon Theory” is your calling!  Watching the behind-the-scenes and seeing how you live with Lupus was fun.

  • Klbrowser

    Have added it to my blog and Facebook pages.

  • Mariyncmorris

    Christine:  I have a book that is coming out in print format this month; it’s already available in all ebook formats.  The Cards We’re Dealt is part autobiographical, part comments from other Lupies, some heart-wrenching and others hilarious.  How do i contact Utube or Johnson & Johnson to add my book to the mix? I have four novels and two non-fiction books, but am struggling to get publicity. I think I missed the promotion gene. 
    Marilyn Celeste Morris
    [email protected]:disqus .net

  • You are a great inspiration and I am blessed to have come across this site over a year ago.   Thank you for reaching out to so many.  Us Lupies need to have a great support system and more understanding.  You are very much appreciated!

  • susan

    You are always such an inspiration Christine, keep it up, and thank you for all you do!! 

  • Fantastic! You’re doing a great job of increasing awareness about invisible diseases. Your blog has been a great source of inspiration for me, especially on those bad days. Thanks a million for being here for everyone.