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almost can't read fb feeds anymore

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I never was one to begrudge anyone else a fun time. I always loved hearing about someone's vacation or trip or great weekend. I was happy they were happy.

Now? not so much. I am finding it hard to see the "happy friday" "Looking forward to a great weekend" yadda yadda. .... posts on Facebook. I hate PANDAS and what it has done to my son and our lives. will we ever have a happy day again? I am to a point now, that I doubt it.

I value the PANDAS support pages a lot so thank you for this chance to vent here too. I don't want to be a "wet blanket" for everyone else living a "normal" life..... so posting here is safe.


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Totally can relate! I even sometimes find it difficult to join in conversations with other moms as they discuss what they view to be difficult decisions..."football vs basketball" " ballet or tap"....really? These are your big decision making crises for your child? Our decisions are " IVIG or PEX?". I sometimes want to say "why us?" but why not us? I see families with very sick kids with uncurable illnesses and I become grateful for an illness that still offers HOPE. The difficult part of this illness was losing the son I knew so quickly overnight with no warning and nowhere to turn, no one to understand, no doctor willing to help and watching him suffer with no way to revieve his torment. Then when he is finally improving.... holding our breaths wondering when he will be gone again and having my heart ripped out again. Faith, hope and love..... we have a deeper understanding and this gets us through the tough times.

Prayers to you, Linda

Edited by 3boysmom
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  • 11 months later...

Hang in there you guys. It's true that there is hope for our children. My girl has suffered for 14 years but I swear I am going to get her better. You will to!! I know what you mean about hearing about other peoples lives. This is such a lonely illness. Family and friends drift away. Doctors don't believe you. It is so tough, we are pretty strong parents to deal with this. Once a year, I let myself have a really good cry, which helps. Then I get back to work. :0( I have all of you in my prayers.

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