I've been suffering with this "thing" for about 10 years now and I've been so alone in my suffering. Only very recently have I found this site and felt like I wasn't alone.
The people I've met so far have all been so incredibly kind and friendly..willing to help and encourage. Frankly, I didn't know such people existed.
I've been bouncing around from doctor to doctor feeling utterly helpless and (like I said...) ALONE.
This disease makes you feel ALONE. You feel isolated and unable to function. Most people look at you and think you look "fine"...but you know you feel like death warmed over.
If you try to tell anyone your symptoms, they just look at you like you're imagining it or dreaming it up.
You KNOW in your heart what you feel is horrific; you wouldn't wish it on your worst enemy but sadly, most people can never relate to your pain. They feel FINE...so you must, (since you look Okay).
I look FINE. Everything looks just hunkey-dorey on the outside but inside, it's just the opposite.
At least HERE, I know there's a support network that builds people up, unlike most doctors which end up making you feel just the opposite.
Posted by Carol B (Member # 9110) on :
Thanks! Ha! Yeah I know you weren't exactly talking to me, but I needed a pick me up today so i can pretend.
I can't imagine dealing with Lyme for ten years with no support. I know it's been a lifeline for me. And just like life-it has it's own ups and downs.
I don't have a lot of knowledge to share like some people-but I'm learning, and I've had some pretty good laughs here,too.
Anyway, see you around, Carol
Posted by Lymetoo (Member # 743) on :
Watch out for Carol. She can get really goofy sometimes. She's the only truly crazy one here!
As for this site.....Ain't it great! Been here 6 yrs and not ready to leave yet, even though I'm feeling pretty good and off abx!!
Welcome!!
Posted by Carol B (Member # 9110) on :
LymebrainTUTU is referrring to Carol from PA, I'm sure, not Carol B.
Tomorrow begins our church's Vacation Bible School-I'm helping with the 3-5 year olds. ACK Hope I can keep up. Keep me in your prayers ,
Batty in Balto, Carol
Posted by Carol B (Member # 9110) on :
ps- I noticed on the evening news, CatsMeow, that there was flooding in New Mexico-we have more than Lyme in common. Hope you dry out like we have in MD. Carol
Posted by Carol in PA (Member # 5338) on :
Hey, I saw that!
Carol B, I want you to know that I represent that remark. So there.
Carol
Posted by Catsmeow (Member # 9485) on :
Gee, so many "Carols" so little time....LOL... Hey, I'm just a bit water-logged but otherwise, Okey-dokey...
We are living in the dessert and despite my rapidly failing health, attempting to do what ONLY God can enable us to do....MOVE. We want to move up to the mountains of NM...and away from the dessert plains.
We're extremely close to the border and half the people don't even speak English and fair skinned folks are only 2 percent of the population, so we feel a bit awkward.
We moved from Florida this fall (2005) and bought a new home in NM. Now, 8 months later, we're already ready to sell our brand new home and move AGAIN! Yikes...and we're both in rotten health, but alas, we're gonna probably do it.
But God is good and He will make a way when there is no way.
Bless you all, "Cats" Posted by Carol B (Member # 9110) on :
"Hey, I saw that! "
OOPS Was hoping you had gone to bed.
Well, that's what I'm about to do, so good night y'all.
yes, Cats-we're all better off on Higher Ground.
Carol in MD, not the crazy one ! Posted by bettyg (Member # 6147) on :
Cats, you are most welcome.
I hope when you move, you make sure you have a GOOD LLMD close to where you live so traveling to them will be easy vs. the hours & hours of roundtrips to get their good care.
Wishing you/hubby the best and SOON! Bettyg
Posted by Andie333 (Member # 7370) on :
cats,
I absolutely agree with your post: if it hadn't been for Lymenet, I would have never found my LLMD and would have felt pretty lost and alone.
Over the past year, I've gotten invaluable information and met some really wonderful people.
Good ot have you aboard!
Andie
Posted by lymemomtooo (Member # 5396) on :
Tutu, I can vouch for it.. Guess I better start running..
Posted by Carol B (Member # 9110) on :
Birds of a feather????
I'm too exhuasted to write anymore-I've been herding preschoolers around all morning. Fiesta Time ! Ole
Best moment came when we took a bathroom break, and 4 yr old Emma very privately goes into the stall and locks the door, but then crawls back out under the door when finished. So, of course, I tell her she has to crawl back under to unlock it from the other side. She crawls back under and back out again telling me it's too hard. Meanwhile there are seven squirming kids waiting in line.
But Emma, I tell her "You have to because I certainly am not going to fit under that door and no one else can use it until we get it unlocked."
She eyeballs me up and down, lets out a big sigh , then drops to the floor one more time and wiggles under while I encourage her to give it another try-and this time she is successful! Hip Hip Hooray.
I vaguely wonder if I should tell Emma's Mom how much time she spent crawling around on the bathroom floor at VBS.
Things I learned in PreSchool-Expect the unexpected,don't panic,persevere, think positive, don't be afraid to ask for help and it will get you through many a despairing moment.
One day down- four to go. I think I can, I think I can.
Carol
Posted by lymelighter2 (Member # 6953) on :
catsmeow,
Welcome welcome welcome. You are NOT alone, not at all, but in the good company of lots of us lymies, myself included at 14 yrs and counting (my kids too).
Please visit one of my web sites, www.lymeleague.com and see the other stories about lyme there. Because of the lack of acknowledgement of lyme, everyone feels alone at some point in this disease....it took me over a dozen years to find an LLMD, and then another 2 years after my diagnosis to find this board!
At any rate, you will find most folks here willing to bend over backwards to help. I'd like to send everyone on here a great big hug!!!
If you want a good laugh, check out the playing doctor "game" on this board, under general topics. It will give you a good chuckle and keep things in perspective for you. Poking fun at this disease and the ignorance around it, helps many of us get through the tough times.
"If you're going through hell, keep going." --Winston Churchill