Quote:
Originally Posted by ElaineD
Dear Joanna, I couldn't survive without my support group at Sjogren's Forum.
I have a bunch of Immune Disorders, and my profound Peripheral Neuropathy is caused by them. So I post here. I also have SFN, I don't know what NID means. I don't have Diabetes, if that's the reference.
But I found the Sjogren's forum when I was desperate and they have talked and loved and advised me for over six years.
I have Primary Immune Deficiency Disorder, so I post on the Immune Deficiency Foundation forum.
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I can get that using Google and from my brilliant Duke Physicians or my Husband for 54 years who taught and did research at a Medical school for 25 years: Immunology! He even taught gross anatomy for 10 years. He knows more than I will ever understand and I chose my Duke University Research Immunologist to handle my CVID (my form of Immune Deficiency) so they could bond and understand each other.
I don't know if anything you have would fall under the Immune Disorders category, but lots does!
What do you want for support? Let me know what's on your mind, where you are in treatment and mental and emotional feelings.
Hugs, ElaineD
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Thanks Elaine. Yes it's hit and miss as everyone is affected in their own way and has their own needs they hope to meet somehow through the forum. So right now I'm craving people around me who get it and that's why I want to gauge whether there may be interest in my area for a real life in person group. I was using you guys as a sounding board to see whether this is something people like you/us would ever be interested in. I don't know the answer for myself even though I'm considering trying to reach out to others locally by setting a monthly group up!
This would be mainly for the emotional support and shared understanding. Just being around people who you know you can relate to even if the topics covered aren't necessarily about suffering pain.
I know we all have different needs and many wouldn't be interested in this. I've got to the stage I am no longer equal with my peers and I want to find those I feel kinship with and also to share helpful info where needed / wanted. I live in a small city so may be one of the few suffering chronic pain round here, I don't know. I guess I was using this forum question as a sounding board to gauge whether any of you would consider a real person monthly group of any value if one happened to be set up in your local area.
Nld is non length dependant, so every single part of my body entirely is affected by small fibre neuropathy damage/ destruction at least. I have alot of other lovelies so know how you feel. It is a joy that keeps on giving! ��
I did join the sjogrens forum as despite no diagnosis still question whether this is the cause. But you can't really belong until you know you actually have that and can again relate directly.