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.

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!

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!!!

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

 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.

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

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

 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.

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

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
marilyncmorris@sbcglobal:disqus .net

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