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Originally Posted by
vdub
Shortly after the brain surgery where my pituitary was removed and they had a positive diagnosis of wegs, my sisinlaw went around telling people that she knew of someone with this same disease and "it wasn't a big deal". I was very unhappy about that.
Nearly all of us have heard people say dozens of times "but you are looking great". You just have to grin and bear it. If it gets really bad, trip-up one of your more annoying friends just for fun.
oh wow, I am so sorry you had to hear this from her. I find it even harder when it's family. but we just stay strong and stand stall
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Post Thanks / Like - 1 Likes
Jaha liked this post
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Re: Sometimes it just honestly sucks !!!
Hi...I’m new to the site and just saw your post. I had my 2nd Ritixumab infusion today, and today it finally dawned on me that I’m sick..really sick, and I’ve been trying to pretend to everyone that I’m ok. The infusion room has 5 chairs. Last week everyone was quiet, today the room was chatty. Met some very inspirational women. I finally talked about my symptoms and didn’t sugar coat anything. Actually felt good and cathartic.
Marlene
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Re: Sometimes it just honestly sucks !!!
Originally Posted by
Marley3562
I finally talked about my symptoms and didn’t sugar coat anything. Actually felt good and cathartic.
Marlene
....and that's precisely what Andrew has created with this forum.
I tend to disappear from the forum when things are going well, but then return when things aren't so good and I need a little support and "good and cathartic" feelings after I've told everyone my problems (usually kidney transplant related). I occasionally browse kidney forums, but rarely post. This is the forum I always come to first and genuinely see many of the members as friends who genuinely care.
I always hope that when other forum members seem to go quiet on the forum, it's because they're out there enjoying life!
Diagnosed April 1995
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Post Thanks / Like - 6 Likes
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Re: Sometimes it just honestly sucks !!!
Originally Posted by
gilders
....and that's precisely what Andrew has created with this forum.
I tend to disappear from the forum when things are going well, but then return when things aren't so good and I need a little support and "good and cathartic" feelings after I've told everyone my problems (usually kidney transplant related). I occasionally browse kidney forums, but rarely post. This is the forum I always come to first and genuinely see many of the members as friends who genuinely care.
I always hope that when other forum members seem to go quiet on the forum, it's because they're out there enjoying life!
Understand completely. I have the same cycle.
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