Sle lupus, also bad spine with a lot of operations


Patients Chancroid

3 replies


Topic of the discussion

Posted on

Having difficulty giving up life piece by piece. Yet I know i’m Lucky to be alive. But as the years go by , gets harder to have strength to deal with everything. Especially watching people doing what I had to give up. I don’t think I am envious. Just disappointed i’m Not growing older like I wanted too. I thought I excepted it ok, but gets harder as time goes on.

Beginning of the discussion - 1/7/19

Sle lupus, also bad spine with a lot of operations

Posted on

I agree.  My best friend is 25 years older than me and we are at about the same pace.

 My friends my age can eat and drink and do whatever they want without even thinking about the next flare.  I feel like I have to be a cautious person with everything I put in my body, constantly monitoring for signs I may have a flare because if I catch them early, I’m ok.  

I never want to commit to doing something because I never know what my body will be doing today.  

This is a different path that I didn’t expect I’d have to take.  It’s not the path I would have chosen.  But it is my path and I will try to make it beautiful. 

I wish you the strength to get through every day as painlessly as possible. Be kind to yourself.  

Sle lupus, also bad spine with a lot of operations

Posted on

@rabbit1947 I hear your frutrations... I suffer with Lupus, Depression, and chronic pain from surgeries.

Do you have pain from your surgeries? How are you limited?

I have a lot of joint pain and nerve pain in elbows and shoulders from surgeries... my legs are still good, but think of everything you need your arms for! Just carrying a plate or washing dishes can elicit pain. I feel weak, mainly in my left arm from all the surgeries and nerve injuries... my left shoulder blade wings (dyskenises) which makes simple tasks very difficult and makes me feel weak and hard to use it and carry things. Just washing dishes is hard!

I am still pretty young and all of this takes a toll. I too get frustrated watching my peers out there exercising and enjoying life... I try to limit my social media access so I do not compare my life to others. 

Sle lupus, also bad spine with a lot of operations

Posted on

Very hard to deal with all the different pains. Everyone of us is different. That’s why it the wolf disease. All we can do is share with one another.maybe give an idea hear & there that could help. Most of all I guess learning ur own body & good relationships with all doctors is important.if doctor does’t click with u, find new. I’ve been lucky that way.i know no one could ever know what different pain happens with us. Be true to yourself & ask everyday for the strength for that day. I know it’s hard, really hard at times. Guidance for u to know what u need that day for ur body that day. Ur not being selfish by doing this either. It’s the life we were delt with. Read all the info u can to help u.  Good luck, peace b with u,& remember u r not alone.

Most commented discussions