Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This would be a good article to share with friends / family who don't "get" it.
Finally, a writer who knows about lyme and doesn't demean the patient.
Excellent article about a brave young woman who should not have had to go through all this . . . and it's a very rough road for her.
Most of us have had very similar experiences and quips from ignorant doctors.
I really hope this article helps. I saw zero errors in it. that is very, vary rare. Good for everyone to know all this.
I'm also very impressed the magazine had the courage to print this, in it's entirety, not just a little blurb. It speaks well of their board members' and managers' integrity as members of the human race - and to do some real news of real importantce.
As someone whose symptoms were dismissed in similar fashion for decades . . . and someone with seizure and hyperacusis . . . I know all too well how doctors can discount all that. I've had grand mal seizures in front of doctors. Several over the years, said I was "trying to throw myself off the table"
. . . one nurse actually kicked my on the floor to "get up. I saw you throw yourself off that chair!" She kept kicking until I got up. No help walking to the doctor's office.
Her VOICE when calling my name is what triggered it. It was loud and sudden. But I could not even talk to explain that. One of many blows.
Yes, everyone needs to read this article so they can be better educated and grow a little compassion.
I sure hope the ICU knows HOW to treat the young lady well. There is so much so very unique that is a huge concern when regular doctors treat someone with advanced lyme. They can get so much wrong with standard approaches to just about anything. -
[ 07-11-2014, 03:50 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I said that I think everyone would do well to read this article. Just remember that the thing is, with family / friends / doctors who don't "get" it . . .
they often just don't WANT to get it. Be careful in how much you open your heart to try to get them to understand. Do not expect them to read this and suddenly say "oh, NOW I see." You can be greatly disappointed.
It might be good to share but then not stick around for any reaction. If they are at all affected by the information here (not to mention the humanity of it) . . . they will tell you.
If not, it is most often counterproductive to try to make anyone want to learn. It can be further demeaning and drains our precious little adrenal and emotional bank account.
I've often shared things that I though would surely turn around some I know. Didn't happen.
But, the eternal optimist here (and former journalism instructor) . . . I do still believe in the power of good journalism to share the truth. Just give some thought to how you share . . . what you expect . . . and how to protect yourself around the interactions with others. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"one nurse actually kicked my on the floor to "get up."
Keebler - Literally kicking you when you're down. That's awful - One of the saddest things I've read on here.
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RDaywillcome
Frequent Contributor (1K+ posts)
Member # 21454
posted
So true on both your replies Keebler. I think the majority of us went through similar experiences.
Even with a positive lyme test,I went through similar treatment . Doctors continued to second guess this, and sent me to many doctors. What a waste of the insurance companies money. They wonder why insurances keep going up.
Posts: 1738 | From over the rainbow | Registered: Jul 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Judie,
Well, getting kicked of the ER for a seizure at 2 am was really worse for me (after having seizures for about 4 hours that night & being unable to talk or walk).
Blood sugar had dived to 60, so the glucose from the EMTs brought me back a bit but the intercom blasted in the ER room and I was off like a spastic rocket to the moon. I made a promise to never, ever, return to any ER for any reason.
The nurse kicking me was also not as bad as, just before I learned about lyme, on a public computer in a research room at the hospital - a seizure hit.
The ER doctor said that the computer room clerk said I had CFS. And, "well, young lady, doesn't it bother you that you seem to have all this going on and no one has found a CAUSE for CFS?" ER doc asked.
My brain crawling back for a reply, I muttered something like, "well, yes" -- thinking maybe he understood there must be a lot that we just don't know yet.
"Well that's because there is no such thing as CFS. You need to stop this nonsense right now." and closed my file and walked away.
the nurse was so kind, then, though . . . saying something nice so that I'd not take that to heart so much and that "we're all made differently" - I really needed that kind voice at that time. And the nurse also had my study notes from that computer room.
Lyme was clearly my study topic and they saw that - I was glad I could offer some clue that said for me, "I bet there is more to this." So, around all this, access to their computer center helped me know to get tested for lyme. Little did I know that would not help much, in the state in which I lived.
Oh, my test was positive (for 3 TBD) before all but one of about 10 such encounters. All triggered by sudden noise, but sometimes just someone closing a door or a phone beep. They could not believe it - or me.
At least another dozen times passing out in a medical place. (It happened anywhere I went, when I stood up, but doctors thought it was just a show for them.)
Hitting head, sometimes . . . still just told to "get a life" and "get happy." "No lyme" in my state, I must be "depressed." It was never taken seriously. Then, not even a LL ND yet in the state. (There is now but still no MD is "allowed" to really learn what they need to know.)
I only mention my stuff as, it is so very sad that she is going through all the same things now, even today. "We should all know better" is what the medical folks should have been saying decades ago.
My guess is that the young lady in the article, there in the ICU, has doctors who even today are saying . . . "can't be lyme . . . never heard of such a thing . . . just can't believe THAT" etc.
I sure hope she is treated well in all respects in that ICU. I still suspect that doctors there will not know what to do . . . maybe things will change. Maybe they will step up to the plate in so many ways.
I'm just so glad to see this article speak to the truth. Most other articles will discount the patient in some way. This did not. It's about time. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I really did not mean to go into all that. The article just brought up so much. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
It's good to share our lyme journeys, Keebler.
Maybe there are people with similar seizure who are on the fence about seeking an LL. Reading your stories and what the medical "professionals" did/did not do to you will help them to seek out an LL. Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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