LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
having the week from hell.....and my dog very sick on top of my being sick and let;s just say the vet and I differ greatly on the topic of tick disease.
people dying left and right from MS, ALS, and other popular heart breaking things.
Am I the only one, or does anyone else get fed up with all the attention those popular diseases get and not us????
no one gives a ______ about lyme- even after all the publicity and all the terrible things they here! it just astounds me. and my good friend telling me today he has a tick bite but he doesn't have to take meds until they see what the blood test results are (Elisa).
what the heck!!!!!!!!!!!!!
I am going to tell him I don't want to hear ANYTHING about this and nothing in the future if he procedes to get crazy sx that no one can figure out. im so over it
I think I might start telling people I have MS.
or maybe MS, AND lupus, AND ALS... no, then they will think im crazy...
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
We don't fake illness, we fake wellness !!!!!! I feel your frustration LisaK.
Yesterday I had to attend a funeral. Was in a lot of pain, had a hard time standing. Apparently it was noticable because after the service, I said hello's to friends I haven't seen in awhile. One said to me "You're STILL sick?"
I said "Yeah, listen. . . If you don't get treated immediately after getting bit by a tick, you will severely pay for it for a LONG time! Lyme disease is serious buisness!"
One person was telling me she has to go for a pet-scan to check the status of her cancer. It will be insurance covered. I've been researching on how I could get one to check the status of my brain but it costs 3,000$, not insurance covered.
Posts: 2977 | From Florida | Registered: Nov 2016
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
RIGHT BONNIE!!!!!!!!!!!!!!!!!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
LisaK I'm so sorry you have such insensitive friends! Being a dog lover myself I hope your pup gets better soon.
In my own experience those closest to me offered little or no support. Sadly it seems to be pretty common among Lyme and Co sufferers. I believe it's due to the controversy over the seriousness of the disease.
Sending you a hug!
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6149 | From Columbus, GA | Registered: Jul 2004
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posted
I think a lot of this is due to the politics of the disease. If we had good medical support for the illness, people would take it more seriously.
So, I make it a teaching moment, if I feel up to it. As in, no, that's not the case for me, actually this is going on, and I say a little bit. I see whether the person is listening or not. If so, discuss more, if not, don't bother.
Another technique I use sometimes is to listen and use their wording, and then respond. Like the heading here - if someone says we're faking an illness, then I can say, "It might seem like I'm faking an illness (using their perception), but actually, I'm dealing with ...
Posts: 13116 | From San Francisco | Registered: May 2006
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I feel everything you said Lisa. My family have been living in the Twilight Zone for the last ten years. If you add in how many years we were sick without knowing the cause it's more like 25 years.
The years that my daughter was a psych mess were the worst!! And everyone around me has MS, Fibro, CFS, ALS, etc etc etc. It never seems to end.
I've also had a dog with erichlia.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
I completely understand. Try not to take it personally that they don't understand because it's only about them and not about you.
Personally, I wouldn't alienate the friend who just got Lyme. They may need your help. Let them come to you about it, though, rather than you bringing it up.
Posts: 241 | From New Jersey | Registered: Jan 2015
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I guess I posted the wrong way..
I meant I WANT to fake an illness to get attention like the others do.
I know that is wrong, but that is how I feel SOMETIMES.
not really today, but I did that day. and I am tired of all the other sick people getting what they need and they think they don't .. and im tired of the people who are 'medical mysteries' because they have goofy bloodwork or need a wheelchair or a ventilator or whatever , and because their drs are dumb and stubborn and they are enjoying the ride as a "complex" patient and a "special medical mystery case" so they don't want to know if they have tick disease because it doesn't matter
because they get tons of attention and sometimes free help for what ails them.
I am NOT saying I want to be more sick. and I am not saying that those other sick people are better off than I am- many are not- I am just saying that it is unfair (and I know life isn't fair) that they get special treatment because *their* disease is OK for drs to pay attention to.
'their disease' , I betcha, is a tick disease. I am one of those that believes everyone will one day have it and that will be that. I actually thnk most people have it now- at least out east where I live. a day doesn't go by without someone telling me they have this sx or that.
but , oh no, it cant be lyme ......it has to be age, or MS, or ALS, or stress, or arthritis, or etc etc....
it really gets to me sometimes. I am just venting.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Lisa does your dog have Lyme? Whats wrong with dog?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
What’s wrong with dog? Lyme?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
kayak!!!! wow havent 'seen ' nor heard you for some time!
my dog , yes probably lyme this current vet says. the vet last week said no becaseu , "dogs only get lyme in jionts adn kidney". so I left him.
sorry for my typing. my disease is back and I feel like yuck.
so the dog mayhave also had toxicity from essencial oils (I think) , but no vet will confirm that. why are they so hesitant to say that? she was literally unable to eat or bark and had pus coming out of her mouth, eyes, nose.... she was so sick.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Yes, it is really strange to have this infection, and people around not having a clue to the suffering.
It is all the controversy and the way it has been ignored by mainstream medical system for so long.
The ignorance. Your friend waiting for test results.
They don't grasp what we are experiencing until it happens to them. Then they want to be understood. But that is human.
And when mainstream medicine doesn't respect us, we will be dismissed.
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