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 Post subject: Comment: "Dana just thinks about her pain too much!"
PostPosted: Sat Feb 23, 2008 1:37 pm 
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I just heard this comment though the family "grapevine" and I am angry and yet know that people just don't have a clue to this disease.

My LLMD said the other day in 25 years of being a doctor he has never seen 'viral titers so high, ever!'. Both LLMD's I see have said they can't imagine the pain I have suffered with 8 things bacterial/viral going on.

My pain is life consuming...I don't need to think about it, I live with it daily and can carry on as if it isn't there. I can stand and hold a conversation with someone and never let on what my body is doing in that moment...yet having shooting pains, nerve pain through my jaw,teeth, anywhere, stabbing sensations in my back, rippling, twitching muscle's, burning feet ...ALL going on in the same moment.

Why is it so important that we convince others of our agony? I shouldn't care at all what this person thinks, he could never even begin to imagine the sensations and pain I feel.

Image

I just have to think back before I experienced this insanity, that I would have NEVER imagined anything this painful existed...no idea.

My favorite scripture today - Proverbs 28:17 : "Even fools are thought wise when they keep silent;
with their mouths shut, they seem intelligent"
(NLT version)

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 Post subject: Re: Comment: "Dana just thinks about her pain too much!"
PostPosted: Sat Feb 23, 2008 2:47 pm 
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I can't relate to "severe" Lyme pain (or maybe I can -when my LD was active), but I can relate to other types of physical and mental pain day in and day out and also being worn down mentally by sickness.

If someone hasn't been through something they will always look in on it and think that it "isn't that bad" or you're just "overreacting". You can't convince anyone of something they haven't been through. I can sit here and tell you all day that such-and-such sport is the hardest sport in the world and you'll never fully grasp where I'm coming from until you've tried it. That goes for anything.

Send them down the same path and see if they don't "think about their pain" too much.

Worthless comments by inexperienced people should be ignored and not even given the attention they're trying to get by saying those things. Everyone is a critic and an expert.

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"...I am the LORD who heals you." - Exodus 15:26


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 Post subject: Re: Comment: "Dana just thinks about her pain too much!"
PostPosted: Sat Feb 23, 2008 5:42 pm 
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When you are constantly in pain - high levels of pain - do they expect you to just forget about it??

I have tried not to define myself as someone who has Lyme - but it's life consuming. It affects every moment of every day. Lyme is my life right now - it's the only life I have.

I was hoping to go to a friends 50th birthday party this evening. It started at 7:00 - I thought, "cool, I can go from 7:00 to 9:00 and see all my friends - some of which haven't seen me for two years". I was feeling pretty decent all day until 6:00. Now I have a headache and stomach ache - couldn't bring myself to go.

So yes, it does define our lives right now and we think about it ALL the time.

My hubby even tells people who ask about me "It's going to take time. She doesn't have a life right now" It helps them to understand a little.

I heard through my SIL that one of my brothers was going to tell my twin and I that our Lyme was in our "heads" He did some "research". She warned him not to say anything and then warned us just in case he did!

I hope you feel better soon, Dana, nobody needs a break right now more than you do!

Many prayers and blessings to you

Molly

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 Post subject: Re: Comment: "Dana just thinks about her pain too much!"
PostPosted: Sat Feb 23, 2008 5:51 pm 
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Dana, you know how I stand on this issue. Not everyone has experienced the pain we have. most would not even tolerate it for a month, I've lived it for over 10 years, you've lived with it for an increadibly long time, I have so much to say on this, I have to get back to this tomorrow. YOU DON"T THINK ABOUT IT TOO MUCH, you research , you are active in your medical care, you are trying to find answers, it's better than what some people do, sit back, and do nothing....

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"something good WILL happen to me today"

(Isaiah 53:5 NKJV) But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.


Any advice given by me, is just that, advice. I am not a medical doctor, and I suggest you talk to your doctor about any concerns.


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 Post subject: Re: Comment: "Dana just thinks about her pain too much!"
PostPosted: Sun Feb 24, 2008 12:09 pm 
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Molly - First I am sorry you had to cancel w/your friends. This last Thanksgiving a friend of mine I haven't seen in 15 years was travelling through town and wanted to visit. I couldn't, I just couldn't and I know I really hurt her feelings, even though I tried to explain this disease. I don't make plans, I can't, I always have to say it will matter how I feel that day, I can't say yes for sure to any plans.

That is excellent what you said that you don't define yourself as someone with Lyme. I have done the same thing since day one.

When I first came to LD support forums I noticed many user names were something like oh, "tick...something" or "lymewarrior" and so I was trying to think of "lyme" user name, when I had a thought....lyme is not who I am, I may have Lyme for now, but I am first and foremost a "child of God 1st, that is who I was and still am...Cog1st.

My brother who has gone to AA for years refuses to say "Hi I am Bob, I am an alcholic" He said it isn't who he is, why would he introduce himself that way? AA thinks he's in denial probably, but I see his point exactly, so he says this instead when he speaks, "Hi, I am Bob a Child of God who has had problems with drinking". I laughed when he told m that...but I like it.

The 'critics' of this disease don't have a clue about what they are talking about. They have no idea that I wouldn't be thinking about Lyme if it hadn't consumed my body entirely.

Jaime - I know you have been through it too - don't let it get to you. My first response was to be angry and then I just thought, "he doesn't have a clue"....just like millions of other people and doctors! He just is no different, he lives in the majority that are illiterate as we once were to LD. Like Danny said above everyone is a critic and expert.

Love,
Dana

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 Post subject: Re: Comment: "Dana just thinks about her pain too much!"
PostPosted: Mon Feb 25, 2008 6:09 am 
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Dana, that's great about your brother! I love it! We were talking about this before, "owning our disease" and trying not to "own" it, letting it become who we are. How does one do that though when you talk to people and try to explain, "I have lyme disease" I openly tell people about, trying to get them educated about it.

It's a shame people can't be more understanding. And about the person who did "all the research" and it's all in our heads... where in the world did they find that research at? When I google LD I find tons of info on it, not things down right saying "people who say they have LD are crazy it's in thier heads, there's no such thing"

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"something good WILL happen to me today"

(Isaiah 53:5 NKJV) But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.


Any advice given by me, is just that, advice. I am not a medical doctor, and I suggest you talk to your doctor about any concerns.


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 Post subject: Re: Comment: "Dana just thinks about her pain too much!"
PostPosted: Mon Feb 25, 2008 8:19 am 
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My favorite fantasy is that Laine could touch doubters and they would feel for just that instant exactly how she is feeling. I bet most would pass out. There must have been an old Twilight Zone episode like that I am remembering.

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Susan


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 Post subject: Re: Comment: "Dana just thinks about her pain too much!"
PostPosted: Mon Feb 25, 2008 11:09 am 
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I have often said that. If these "others" could feel how some of us feel just for ONE day, they would not even have the words to describe it. And I've often said that I wished EVERYONE would feel like this for ONE month out of thier enitre life, just to know what it's like, so they would not dare open their mouths against again, one month is nothing compared to what so many of us have battled. But I just pray that HE will lighten their hearts.
I also believe that "what goes around comes around" Dana, you'll love this because I"m going to quote Joyce, hehe. "God will give you DOUBLE for your former trouble" and that's not talking in heaven, that's in THIS life, so all of our suffering we've been under, we will get DOUBLE the greatness for it all. "Something good is going to happen to me today" Joyce says to say this every morning before your feet even touch the ground! I say it all day long! haha

You're loving this Dana aren't you? :jumpy:

_________________
"something good WILL happen to me today"

(Isaiah 53:5 NKJV) But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, And by His stripes we are healed.


Any advice given by me, is just that, advice. I am not a medical doctor, and I suggest you talk to your doctor about any concerns.


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 Post subject: Re: Comment: "Dana just thinks about her pain too much!"
PostPosted: Mon Feb 25, 2008 6:22 pm 
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Are you watching her more than I am now??? :angel: Yes, I am lovin' it!! Tell me she isn't the best minister/teacher ever? Isn't she great?

Yes to both you and Susan....

I wish that just for a HOUR my parents, sister, everyone...could just borrow my body for an hour that is it...
Oh, my dad especially! They have all been very supportive, I have to give them credit for that, but they will say things that bother me that proves they just don't have any idea.

But if only an hour...I guarantee they'd say, "How have you lived in this body with all these weird painful sensations all this time?" They wouldn't believe it!

An easy way for me to relate...I remember when my husband herniated a disk. He was in a lot of pain, but I thought, oh he is sooooooooo over reacting! Then 10 years later, I was simply closing up a box and I herniated disk in my low back and I can tell you, the pain was so excruciating I was crawling on the floor screaming in agony! NOW I understood his pain.

When the pain began in my shoulder blade 2 years ago, it was so intense and had such bizzare sensations I could NOT put it into words. Recently for about a month Paul had the same shoulder blade pain and was going insane! He said, "I cannot believe you lived with this pain, this is unreal". I said, "Yeah, that was BEFORE that pain spread EVERYWHERE else in my body...now imagine that!" He said, "I can't".

No.....they can't imagine it.

_________________
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Join us on Facebook and connect with other Lyme patients: http://www.facebook.com/home.php?sk=gro ... 2524317756
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Truth About Lyme Disease Home Page: http://www.truthaboutlymedisease.com
Truth About Lyme Disease Video : http://www.youtube.com/watch?v=ZGQINypsf7g

Always check w/your MD regarding advice given by me or any member at this forum & any articles & info. at this site. Site disclaimer: viewtopic.php?f=6&t=16


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