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» LymeNet Flash » Questions and Discussion » General Support » Anyone tell your Lyme story to others?

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Author Topic: Anyone tell your Lyme story to others?
Ocean
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I did for the newspaper this morning and I didn't expect to feel so rough later. I started at the beginning, all the treatments/misdiagnosis, all the scary symptoms (esp sleep paralysis that was worse than a panic attack), I laid everything out.

And it made me think later throughout the day. It made my life seem so sad. At the end the reporter (she was young, 20's) asked, "Do you ever get angry that this happened to you?"

Of course I said yes, but (and I started to tear up) the fact that my son most likely has Lyme is what kills me inside.

But you know what?? If someone can read my story and go to a LLMD, maybe they will go before they get pregnant and their child will NOT get Lyme. Maybe someone will have been ill just a few months and see this and get treated before the months turn into years and decades.

It was very easy to write to the newspaper. If you are comfortable, I encourage you to do so. It's scary putting yourself out there, but I promised myself years ago that if I ever got back to normal again, I would become a doctor and if there was another human being who felt as bad as I did, I would help them.

I'm not normal yet, and I don't have a medical degree, but I think spreading the word about Lyme realities and poor testing methods can help a lot!

Take care,
Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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lakes592
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Good job Ocean and great question by the reporter! Your story will help others. You are doing a wonderful thing by sharing it. I always think of writing to the papers then I chicken out. I think I will at some point in hopes of helping others.

Take Care,
Ann

--------------------
If you keep doing nothing...nothing changes!

www.underourskin.com

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John S
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You are braver than I.
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Starfall1969
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(((((Ocean)))))

I am so proud of you for what you have done in sharing your story.

I too wish that I could muster the courage to write to our local paper.

I'm just afraid of putting myself out there, and I figure this town is more interested in the continuing argument of whether or not to build a WalMart thanthey would be about some poor sap who has such an insignificant disease.

Maybe someday I'll have the courage to speak out.

Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
carly
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Wow, Ocean!

You are very brave! I give you props for putting yourself "out there" for the greater good.

Sharing your story serves as quite an example to us all.

[bow]

Posts: 797 | From New York | Registered: Feb 2008  |  IP: Logged | Report this post to a Moderator
bettyg
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ocean, that was so interesting, and when asked ... can't remember without scrolling up/down and then i lose my thought process.

anyway, i'm glad you teared up showing your raw emotions to this reporter.

since we look so normal; this puts another aspect to our stories.

yes, when mine was published i heard quite a few remarks. best part was using the ON LINE LINK, and it traveled across the USA and overseas!!

THANKS OCEAN for writing your letter and doing the interview yesterday; will be interested in reading your story.

enjoy being that celebrity as a spokeswoman for LYME/CO-INFECTIONS; you are SAVING LIVES!! [group hug] [kiss] [group hug] [kiss]

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Ocean
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Thanks guys. If anyone is up to it, it can hopefully help other people. It still scares me a little, she said it will be on the front page of the Lifestyle section...a little scary! Now I'm just wanting to see what was written!

I was just surprised how emotionally draining it was to tell the story. I became visibly anxious a little, kept fidgiting, but oh well.

Wow Betty, your story went across the USA and world?? Was yours in a big paper?? This paper isn't as big as Cleveland or Columbus papers, but not a small town either.

I just got an appointment for our son for this Monday, so we will be in WI when the story comes out.

Take care!
Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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Starfall1969
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Ocean, You're such an encouragement!

I just posted on a separate thread that I am going to send a letter to the editor of our local newspaper about Lyme Disease Awareness Month.

In response to a tongue-in-cheek column about lesser known observations that take place in May.

I'm giving a bare bones education about Lyme disease and the difficulty many have with being diagnosed, as well as documenting a little of what I've been through in the past year.

Of course, there are word limits, so I can't get into a lot of detail, but maybe, just maybe, this will raise enough interest for them to do a story on Lyme.

I'm still afraid of backlash, especially from area doctors, a number of whom I dealt with along the way and who told me I have nothing more than a case of anxiety/depression.

But I will do my small part and hope that I can help someone, somewhere.

Thanks for the encouragement, Ocean!

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Michael_Venice
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which newspaper was it for?
Posts: 322 | From Venice, CA | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
Ann-OH
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Hey, Ocean, good for you! I hope you have inspired some other people here to write a letter to their paper, or call and see if anyone at the paper or the TV station wants a good interview for Lyme disease Awareness month.

Can't wait to see the story!
Ann - OH

--------------------
www.ldbullseye.com

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rosebuds mom
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Great job Ocean!!!

I know how hard it is to hear yourself talk

about something so deeply personal and unfair,

especially publically. When someone has

experienced a trauma it is not unusual to have

the shakes and feel extremely anxious when

talking about it.

By sharing your story you went

from feeling like a victim of Lyme to being a

hero of Lyme.

Thank you from all of us.

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bettyg
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ocean, our city is 50,000 plus; so it's fairly good-sized for small town iowa.

my home town was 800 !! our entire school was 300; my graduating class was 27 [Smile]

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suzeq
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Ocean,

Great job! I would like to support the comments to get the word out especially since May is Lyme Awareness month.

I work in a public library and while it might be too late for this May's programming, it could be a good tie in to host a showing of Under Our Skin with the newspaper article. Most forward thinking libraries would jump all over this community awareness topic.

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LisaS
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Great job Ocean. I recently emailed a bunch of local newspapers about The Trish Project and May being lyme disease awareness month. Three have now emailed me back a couple times now. I'd be so nervous to give them an interview, you are brave. But I would. I'm so sick of this disease and what it does to everyone who gets it.

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mkh4peolyme
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You did GREAT!! [bow] [bow]

We're all behind you 150%!

What is the Trish Project?? I thought I was up to date on lyme info, but guess I'm not.

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bettyg
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mk, it's in activism

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/8/1658?

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