Quick note about “adding me as a friend” on facebook

 

HI Guys, I love that so many of you want to add me on facebook as one of your friends. It is great being so connected with the BYDLS community. It is hard to know if you are adding me because of this or because you are a spoonie, unless you add a little note with your add request. I will be sure to add you quickly, if you add a note. Thanks!

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  • Jackie

    I have RA and diagnosed about a year and half ago. It has been the hardest thing to go through when no one around you understands. Thank YOU so much for the spoon theory.
    ((HUGS))

  • Andra Bhaggan

    Hi…just happened to see a link to this site—i have Cerebral Lupus—and i have had it for about 7 years—-i totally understand and can relate to almost all of your notes—mine affects my brain and all the other major organs. Would be great to add you. Have a great day.

  • All I can say is thank-you for your article with the spoons. My fiancee found out back in August last year that he had Lupus, but didn’t tell me. He lived with it and all the anger and resentment alone until January when he threw the fact he was dying at me and moved out.

    We’ve since continued to talk and date, but it’s been really rocky. He still doesn’t talk about what he’s going through and it seems like every time things are going good between us, he runs and starts getting angry and lashing out.

    Not knowing what he’s going through, or how it makes him feel is hard, and I keep just telling myself to stay there, to not run from him when he needs me even if he’s being a horrible person right now because of what he’s dealing with.

    Your article helped shed some light on what life is like for him, and why he’s lashing out so hard. Thank-you so much!

  • Allison

    I have you connected to my email account, but not every day I review my emails. I think I have sent or posted a note before. My sister has SLE, she seems to be in a remission. She works part time. Me on the other hand I was diagnosed with the painful chronic autoimmune disease called Ankylosing Spondylitis. I wasn’t diagnosed in the early stage. I am 50 and am now unable to work. I was a nurse, not a good profession to have with this disease. I had to fight for coverage of an expensive medication Enbrel and finally am on a compassionate coverage. My bloodwork is starting to improve and my rheumatologist has decreased the frequency of the lab work but let’s say, I have to watch my spoons. Today I have much pain. There is no cure for AS and like many others with chronic illnesses have battled fatigue and depression. I have passed around your theory to others with AS, a friend with PPT as well as my sister who has Lupus. Excellent theory.