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» LymeNet Flash » Questions and Discussion » General Support » I am so happy LymeNet is here.

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Author Topic: I am so happy LymeNet is here.
Shiela
LymeNet Contributor
Member # 28681

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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 | Report this post to a Moderator
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149

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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 | Report this post to a Moderator
gonzo
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Member # 41410

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Your not kidding its like having friends that really care
Posts: 47 | From new england | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
GretaM
Frequent Contributor (1K+ posts)
Member # 40917

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I completely agree.

I learn important things about these infections, and everyone is very kind and helpful.

This forum, and all of you, help me feel supported.

I very much appreciate it, and all of you.

Many thanks

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

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yep

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Robin123
Moderator
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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: 13049 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Rivendell
Frequent Contributor (1K+ posts)
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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 | Report this post to a Moderator
Jane2904
Frequent Contributor (1K+ posts)
Member # 15917

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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 | Report this post to a Moderator
faithful777
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**moving to general support**

--------------------
Faithful

Just sharing my experience, I am not a doctor.

Posts: 2680 | From Colorado | Registered: Oct 2009  |  IP: Logged | Report this post to a Moderator
KentuckyWoman
LymeNet Contributor
Member # 38894

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Amen

--------------------
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 | Report this post to a Moderator
linky123
Frequent Contributor (1K+ posts)
Member # 19974

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I would have lost my mind a long time ago without my LN friends. [group hug]

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'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 | Report this post to a Moderator
Beloved
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Member # 37415

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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!

I'm just saying.

[ 09-05-2013, 03:08 PM: Message edited by: Robin123 ]

--------------------
Lyme: 1991
DXed: 2008

'Do not go where the path may lead; go where there is no path and leave a trail.' Emerson

Posts: 45 | From Georgia | Registered: May 2012  |  IP: Logged | Report this post to a Moderator
Robin123
Moderator
Member # 9197

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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: 13049 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
   

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