Thankyou to everyone who has shared their struggle with unbelievers.
I had my first experience today with someone totally not believing,telling me that my kids could not be as sick as I said...I won't put you through it although I can't resist to relay that the asst. superintendant told me that my daughter was seen "frolicking through the halls" then in the same breath countered my statement that she was now having a lot of trouble walking because of equilibrium and numbness with-"Why can't you get her a wheelchair?'
Alls to say I spent 4hrs on the phone pushing for homebound tutoring...I was sooo angry, I cannot get it into words.
But then I remember all the posts about lymies being subjected to the most stupidly offensive innappropriate remarks and it helped me have a modicum of self-control.
I was like OH this is what they are talking about This is how school administrators, drs etc. behave when they don't get it. OK its not about me. I was able to step back not stoop to far in this conversation escalating into argument and feel a bit sorry for her. Mostly because you have helped me know our rights and that we have support and shall prevail. (and that I'm not crazy)
Incidentally, she does believe in the Florida State football player who has lyme and couldn't play this season. That's something. I wonder how sick he really is. Is he still taking classes? Feel bad for him, but it is amazing the awareness he has generated.
thanks again, keep fighting the fight Susan
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posted
GRRRR!! Sorry to hear this...but glad to know that we "kept you from sin"!!
Yes, Wyatt Sexton is attending classes, but is only taking a few.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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lyme_suz
Unregistered
posted
Hi Lymetoo,
I think it says a lot about our culture that people are so shocked that he CANNOT PLAY FOOTBALL and express concern for him, but dismiss sicker kids than him right under their nose. Not to take away from his loss. I really hope he can heal quickly.
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
I read he is going to practice again.
Linda
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
suz..Sorry that any other parents or children have to go thru this hell...Get your info and rights in order so they that you do not allow them to take further advantage of you.. lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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You guys are great. We shall prevail and we're NOT crazy. ("Brain messed up but mind sane," right Lyme_suz?)
No matter how many times I have to go through this sort of this, I'm still surprised at the prejudice and ignorance, and lake of true charity, of those who you'd expect more of. Perhaps because, in their posititions, it seems you have a right to expect more of them. Dealing with people and situations can be SO exhausting. Stepping back, that's the ticket. Not sinking to arguments (hard, I admit!)...particularly if the "attack" is not on us but on our children.
Even my daughter feels it for me. "I wish no one would ask how you're doing, Mom. I want to tell them, 'That's nice she looks good but he's doing horribly so mind your own business.' "
When I was in the hospital ER a worker wrote on my chart, "appears hyper-religious" -- because of a tee shirt I wore and a word I mentioned, "temptation." He looked at me like he didn't know what that word meant. We have to learn to speak in terms others can understand in their comfort-zone settings...provided you can think of them. For symptoms, words like, "fluxuate from day to day and in the course of a day," and "ever been really ill with the flu for two weeks? Think 5 years." Things like that. To pity someone's ignorance and disbelief is better than to try to "force" him or her to understand. Force. Umm-hm. Bad.
Reaching common ground sometimes means, in the school situation, getting a home tutor arranged. (I had one teacher who wanted to fail my "A" student because she had to withdraw from the class second term, "just because she was sick." She felt I was rewarding my daughter. This teacher would smile and say "I love my students" -- a shallow smile without warmth, words without meaning. I found it chilling and didn't know what to say to her. Had no energy to say the obvious "No, you don't...." I think I did her a disservice by not saying it. It might have made her think, at least. Hard to know.
Keep praying for patience! +
-------------------- cecy sunshine "I remember me." Posts: 33 | From Salt Lake City, Utah, USA | Registered: Nov 2005
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There are resources, things you could try to show these people so they aren't just going by what you say. Support for your position, in other words.
The Lyme Disease association has a folder you can get and show to them: "The ABC's of Lyme Disease" which is described as important information especially for parents and educators. There is also a video prepared by a CT group, meant for schools I think. If you want the details, I will try to find them. Can't remember the cost, not much though. Oh wait, here it is, from the Lyme Times special childrens issue:
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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