My Lupus Story; The Journey of Diagnosis

The Alliance for Lupus Research has a FaceBook page and asked people to share their stories, their journey and what led to their diagnosis. This is mine... but, I want to say, I read the stories by others, they are touching, inspriing and brave. I had to share mine in video mode because it's now too difficult for me to type much at once... I hope their's and mine will inspire other's to share as well. Thanks.

Alliance for Lupus Research Facebook Discussion Page:
http://www.facebook.com/topic.php?uid=44101039807&topic=10467

Jax's Video: This could happen to you: Something EVERY WOMAN should see!!! Please watch, rate her very powerful video and then share it with every female you know. You will be helping to save lives... and there's no exaggeration in that statement what so ever.. please click the following link:
http://www.youtube.com/watch?v=tktjAIZRiXw&feature=related

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Thanks!

Category:

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[acupuncturekim]

I am 41 years old and I was diagnosed with Rheumatoid Arthritis (also an autoimmune disease).

I was treated with acupuncture and no longer experience any pain or auto immune health issues.

Please consider seeking traditional chinese medicine/acupuncture for your health concerns.

I hope this helps you.

[Michellemlm]

Thanks Kim, a lot of lupus patients have tried this & for mild lupus it is sometimes helpful, However for more severe lupus re: organ involvement, overlapping diseases, due to layers of systemic disease throughout the body, organs, it has proven to not be as successful. Some patients do say they get some relief with but that it is short lived.. however, they also say, "If we could just go every day it would be GREAT" So I agree there's some benefits but not a cure for organ involvement etc..

[Michellemlm]

Also, (ran out of room in the previous comment) I do agree with natural medicine/remedies whenever possible and/or in conjunction with traditional. I love that you advocate for that as I believe it's better to replenish the body, nurture it... and want to thank you for posting about this. And I do advocate people trying acupuncture.. they definitely should see if it will work for them before going on other treatment!

[puglover50]

Great video...I never get tired of watching your video's and I always learn something new..

xoxoxo

[Michellemlm]

You're so sweet... thank you. I love you

xoxoxoxoxo

[2020Dave]

I don't know if any of you happened to catch the last part of Geraldo Rivera's show today, but there was a Doctor interviewed who talked about Michael Jackson's Lupus and that all the nose surgeries were because of his lupus as well as his skin problems...

I don't usually watch much on Fox, but as I was flipping through the channels it caught my eye...His show repeats tomorrow if you are interested in watching, you'll have to check your local listings for the time...

Great video Michele...

[Michellemlm]

Thanks David! I will check it out!

[tella0784]

Hi Michelle, My name is Donatella, I'm 27y.o.. I've been in bed rest and hosp. since the past spring; like you I have Lupus/RA, Rhupus + more. and l was officially diagnosed with this disease on in July of the week of my birthday actually, lovely surprise. Since then getting out of bed or even moving has been a challenge and when I came across your video seeing you in bed too, I don't feel like I'm the only one. Keep the video's coming sweetie, and stay strong. :) ~Tella

[hermitwoofy]

Thanks for the video, I've definitely had some of the symptoms for years but only a podiatrist once thought I might have lupus (without either of us remembering to ask my doctor to be tested). I have rashes, bladder infections, lethargy (by the way, it's pronounced LETH' ar jee, though if you have it you become leth AR' jic), lung problems and water retention in that area but nowhere near to your problems. It could be from other things, but I'll try to convince my weary doctor to test for it.

[dylanesque66]

oops...sorry. this last post was meant for your mj comments section.

[dylanesque66]

All of Mike's masks were shaped exactly to protect for a lupus malaar butterfly facial rash from UV.

Go look on Google images at lupus malaar butterfly rashes.

They sell those same masks Mike wore at medical sun protection clothing places.

The tabloids making fun of him for wearing them were cruel and stupid.

The umbrellas were also to protect him from permanent lupus scarring on his face from the sun. Plus the sun accelerates the INTERNAL damage from lupus if you have SYTEMIC lupus, versus ju

[ANTIJPUG]

Keep educating please u'r doing well

[LUCAX651]

hi thank you so much for this great video my friend. I am a 17 yr old boy who was initially diagnosed with M.E/C.F.S CHRONIC FATIGUE SYNDROME, however this was a misdiagnosis and just a few weeks ago I was diagnosed with Lupus/S.L.E

I am going through a rollercoaster of emotions such as anger because of the misdiagnosis!!! aargh!!!, fear, sadness,crying all the time,loneliness as all my so called ''friends'' dumped me!!. I need some nice friends help me love luca-asher xxxxxxx

[hba141hba141]

you look great .....

[2pinkpossums]

you are amazing I love your videos and i can relate to so much of your story, thank you so much xx

[meagan2797]

my 29 year old twin sister just passed away from lupus 6 weeks ago. its a very scary and serious disease. please all take care of yourself.

[lovesfreedomtoo]

In my journey to diagnosis, I found I had to get angry to get anyone to listen, but no matter what the docs said, I knew something was wrong, so I would not give up. It took years before I was diagnosed. I have been labeled a hypochondriac, a liar & drug seeker. Those labels with kidney failure, liver failure, heart problems leading to open heart surgery, lung problems, butterfly rash, reynaud's & I wondered what it was going to take. There are times I still wonder, Lupus is so misunderstood