Living with Lupus, Hope and Faith

I do not own this song or lyrics.. Its Imogen Heap's "The Moment I said It" This video is about my experience with lupus and trying to educate others about the disabling disease. I suffer from SLE (systemic Lupus erythematosus) I have more of the severe kind. I have had 8 TIA's 1 pontine stroke, seizures, CNS involvement, Stage II lupus nephritis, Raynaud's, Vasculitis, myositis, Serositis, Avascular necrosis of my hips..

Category:

Nonprofits & Activism

Tags:

• Lupus
• SLE
• imogen
• Heap
• CNS
• seizures
• stroke
• tia
• nephritis
• raynauds
• vasculitis
• avascualr
• necrosis
• OneTrueMedia

[msdelle22]

i have a love hate relationship with prednisone

[AmyTx]

@msdelle22 yes me too.. i love that it makes me feel good but i hate that it tears my bones up

[rajooy]

God bless you

you are stronger than me

It brought me to tears especially when you mentioned suffering from AVN in both hips.

I'm suffering AVN in one hip and in many times I lose my spirit and just stay home and keep eating and gaining more wieght over the weight I allready gained because of the prednisolone intake.

Whenever I felt down I will watch this I need to be stronger

I need to be stronger

I need to be stronger

[AmyTx]

you can do it when you get bad results do what you can to fix it the best you can..I get scared alot too having lupus but i keep getting better and stronger..granted some days the mental aspects of lupus get me down. i want to see my kids grow up.. god bless and take care

[99thDimension]

Watching videos like this is real life, fighting for life one day at a time and more importantly living life to the fullest. What I see is a loving family facing the battle together. Respect comes from the understanding of what you are enduring and the blessing of the strength of your family. Thank you.

[AmyTx]

thanks so much it is a daily battle that I take on full force..i just dont want to take my life for granted anymore I have been given a second chance..

thanks again

[kacklebird2]

Amy, I think you and your family need to be the voice for Lupus. Your pics, videos, etc definitely speak for how Lupus affects those who suffer with it. I pray that you're doing better. You've been through one long and rough road. I too have Lupus and it certainly does turn someone's life upside down.

[ny922]

your an awesome lady to share this with us I am honored to have you as a freind it's amazing how this illness can change your life so drasticly . praying for a cure ... Luv ya

Aida

[jansteveryan]

You are amazing. I really felt that your story could talk for so many people fighting

with the sever symptoms of Lupus. Thank You.

[Maehailey]

This is Sam from LFA.. You did such a wonderful job. You my friend are a true inspiration to all of who are suffering with this horrible monster..You are a beautiful person inside and out lady. What a wonderful family you have. Thank you for sharing. ♥hugs

[GMPNY]

You are a brave person. God is not done with you yet! You are to teach the world how to survive while living with adversity and still being able to give love and continue on and have FAITH. Your family is waht it is not for you but because of you :-) Faith gives hope with no hope there is little faith and you have BOTH! God Bless you and your wonderful family :-) Merry Christmas!

[Kacklebirdkathy]

My heart just aches for you. You are one of the strongest people that I have ever seen :)

[salcedo199]

your amazing you lived through so much.i hope you the best.,i have lupus to and i found this video to let me know some things that could happen if i am not carefull on some things,thank you

sincerly, ,  victor

[massimonesei]

grazie tiziana per condividere quetso vidoe dio benedica queste persone ciao massimo