Ticked off about Lyme Community Group
A place for Lymies to get together to talk about things other than Lyme.
OK-
the good news: teenage daughter is finally showing great improvements. She's been going to 2-3 classes the past couple of mos. or so, and is going to try to add on a couple of more tomorrow.
Although thrilled for her progress, bad feelings towards others- who weren't supportive- are now surfacing. I guess I've been in survival mode for so long and haven't previously had the energy or time to entertain the negative thoughts...And, now I am.
I know that no good comes from holding grudges. But, I am someone who normally sends cards to friends or family who are sick, and/or take food, visit, offer to help, etc. When my daughter was first diagnosed with mono, she got a couple of cards and sympathy. Once the lyme diagnosis...nothing. She's been sick about a year and a half. It's not that I wanted her to receive gifts or anything...but, support and understanding for any/all of us would have been much appreciated.
But, no one understands this disease. So, it's unrealistic to expect support about a disease that is misunderstood and not recognized to actually exist (IDSA). So, I'm just whining.
Mostly, I'm SO very excited about her progress and thankful for online support. These negative feelings just caught me by surprise.
Thanks for listening!
the good news: teenage daughter is finally showing great improvements. She's been going to 2-3 classes the past couple of mos. or so, and is going to try to add on a couple of more tomorrow.
Although thrilled for her progress, bad feelings towards others- who weren't supportive- are now surfacing. I guess I've been in survival mode for so long and haven't previously had the energy or time to entertain the negative thoughts...And, now I am.
I know that no good comes from holding grudges. But, I am someone who normally sends cards to friends or family who are sick, and/or take food, visit, offer to help, etc. When my daughter was first diagnosed with mono, she got a couple of cards and sympathy. Once the lyme diagnosis...nothing. She's been sick about a year and a half. It's not that I wanted her to receive gifts or anything...but, support and understanding for any/all of us would have been much appreciated.
But, no one understands this disease. So, it's unrealistic to expect support about a disease that is misunderstood and not recognized to actually exist (IDSA). So, I'm just whining.
Mostly, I'm SO very excited about her progress and thankful for online support. These negative feelings just caught me by surprise.
Thanks for listening!
I am kinda in the same boat! This whole thing is brushed under the carpet and rarely acknowledged as a real disease..I just wish it wasn't real..
And dawn breaks on marble head ;)
(Reminds me of when a kid says, yeah well my parents will BE SORRY when I run away!!! But it's how I deal with insensitive people; just biding my time till they get it.)
My mother is notorious in our family for being both domineering and insensitive. She was so disappointed this weekend when I showed up with my unkempt hair and 10 lbs heavier than my previous all time high. I am going through an indifferent phase I guess. Not only about my appearance but about here remarks. Thank Lyme for both? You bet.
(Ok, being a little sarcastic with the following......) Mother's Day is coming up. Maybe gifls of "Under our Skin" would be good presents for some women. LOL - hope that wasn't offensive!!
That is a nice thought but my mother still wouldn't "get it" if you know what I mean. "Get it?"
and to think you're in an altruistic profession to boot.
that much is obvious
I ignore their unspoken insult, and tell them allllllll about my latest tx,. That'll learn 'em!
But people seem to think that if you just try hard enough, you can turn it all around. Or they look at you and think that you look fine, so you must be fine.
And then there are those who seem intimidated by what could happen do them, and they do a runner.
You know what, Becca? I remember when my father suddenly died in 1990. I got the strangest reactions. I was the first of all my friends and cousins to lose a parent, and many of them just sort of disappeared into the wordwork. I wonder how much sometimes, what we have scares others.
That's the spirit Jenn!