The Hardest Parts of Having Lupus

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edited February 2016 in Coping

Lupus article: The Hardest Parts of Having LupusThe Hardest Parts of Having Lupus

"Many of my hardest lupus moments are based upon what this disease has stolen from me, how I view myself, and how others treat me," Barbara shares.

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Comments

  • This disease has stolen my life. I have worked 44 years to have this now, this lupus monster. I am tired all the time if I go out I need to rest for the next two days . I don't work anymore I was a letter carrier can you believe that. 22 years running in the street and up and down stairs cold, heat weather was no problem now the sun is my biggest threat, and cold when I never was. It's hard for me to catch a deep breathe. But all the Drs say I am doing good. So why do I feel so bad. I want to do things want to travel and I can't , I am afraid . Afraid of everything. So I stay home and watch the world go by. I am thankful cause I know I could be much worse but it doesn't soothe my heart or soul . I just want to be halfway normal and enjoy some of my life I am 63 and this just swooped in on me like nothing and knocked me down. I get up but it's hard and life is not the same. Sorry for my crying on here but y'all understand . Especially when I look so good as the Drs say I do. Try living in this body just one day and tell me how to just go on. And I will go on cause I don't believe the Lord wants me just yet. Thanks for listening and God Bless all of you with this monster called lupus..
  • this disease has stolen my life. I worked 44 years to have this lupus monster. I am tired all the time if I go out I need to rest for the next two days. I don't work anymore, I was a letter carrier can you believe that? For 22 years running in the streets and up and Dow stairs, cold, heat , weather was no problem now the sun is my enemy, and the cold when I was never cold.its very hard to catch my breathe and a deep breath is out of the question. Test the Drs all say I am doing good. So why do I feel so bad? I want to go places travel see things and Thad all out of reach for me. I am afraid. Afraid of everything. So I stay home and watch the world go by . I am very thankful cause I know I can be so much worse but how worse are you when you cut off from the world? I just want to be halfway normal and enjoy some of my life I am 63 years old. I do what I can but life is not the same. Sorry for my rant or crying but y'all understand. Very hard especially when Drs say I look great.. Well God Bless all who have this monster called lupus hope your life's are halfway decent. And hope they find a cure for this. God bless all
  • This disease has stolen my life. I have worked 44 years to have this now, this lupus monster. I am tired all the time if I go out I need to rest for the next two days . I don't work anymore I was a letter carrier can you believe that. 22 years running in the street and up and down stairs cold, heat weather was no problem now the sun is my biggest threat, and cold when I never was. It's hard for me to catch a deep breathe. But all the Drs say I am doing good. So why do I feel so bad. I want to do things want to travel and I can't , I am afraid . Afraid of everything. So I stay home and watch the world go by. I am thankful cause I know I could be much worse but it doesn't soothe my heart or soul . I just want to be halfway normal and enjoy some of my life I am 63 and this just swooped in on me like nothing and knocked me down. I get up but it's hard and life is not the same. Sorry for my crying on here but y'all understand . Especially when I look so good as the Drs say I do. Try living in this body just one day and tell me how to just go on. And I will go on cause I don't believe the Lord wants me just yet. Thanks for listening and God Bless all of you with this monster called lupus..

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