posted
Waging war on this disease(s) is so tough. Some days it gets me down. On top of that dealing with people that really don't understand anything about the disease(s) itself and the limitations it puts on us and then on top of that the war to find and get effective treatment--some days it's tough.
Thank you LymeNet community for being here. I feel safe here, knowing that you all understand. I can speak without fear. I don't have to explain myself when it comes to the disease. I know you understand. That is precious to me.
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I'm with you Shiela. :) It is comforting to be among others who understand. I think that's why this site draws me back so much. I want to help, learn, and be among others who actually "get it".
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
Thank you - I agree! An ongoing conversation for us -
Additionally, there's all the archived posts as well which you can find through the Search function at the top of the page - a record of everyone being helpful through the years -
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Very, Very glad lymenet is here. Otherwise, I would still be hopelessly treating Chronic Fatigue Syndrome.
As bad it is to have Chronic Lyme, CFS is NO MAN'S LAND.
Posts: 1358 | From Midwest | Registered: Apr 2009
| IP: Logged |
Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Me too! I am so glad Lyme net is here.
Lots of help, kindness and support!!!!
Posts: 1357 | From Massachusetts | Registered: Jun 2008
| IP: Logged |
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
I would have lost my mind a long time ago without my LN friends.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
posted
I was in a car accident 30 years ago, broke my back, and ended up using knee high leg braces & a cane.
And for all that first decade before Lyme, people would say What a blessing I am, an encouragement, etc. but when I came down with Lyme, people started drifting way.
When I got my spinal cord injury I utilized ways to survive, to transcend. But all of you know that Lyme, FMS, CFS don't play by the usual rules. You commit to something the day before, the next day you're trashed, people think you're unreliable, etc.
I really want to have a talk with God about all the societal and other things that come with Lyme when I get to the Other Side!
'Do not go where the path may lead; go where there is no path and leave a trail.' Emerson Posts: 47 | From Georgia | Registered: May 2012
| IP: Logged |
posted
I think it's 'cause people can relate to injury and healing and heroic effort.
But when it comes to something they don't know about nor understand, that's when you don't get the social support you need and deserve.
I try to explain it very quickly in order to paint a picture of what's going on so they have something to visualize, to think about -
usually I tell them immediately that it's a bacterial infection, that the bacteria can go everywhere and mess up our systems, and then we're not able to function,
and that it's erratic how it affects us, and please to have patience with us, take a cue from us as to how we're doing, etc.
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic