I've just recently discovered that I have Lyme Disease. There's a long story behind that, but I'll leave that aside for now.
Two doctors have told me that I likely first got Lyme disease as a child. I am now 49 years old. I think this is probably true - removing ticks at the end of the day was a daily ritual back then. And then I believe I had a big re-infection in 1992, and I've been disabled ever since - DX with depression, ptsd, fibromyalgia, migraine, asthma, fibroid, tachycardia, vertigo, etc. etc. All these DX of symptoms, nobody putting the picture together. (It took *me* to do that).
Among the many things that are blowing me away at present, is looking back at my childhood and realizing how many of my "oddities" can be linked to Lyme.
I was looking over a recent topic about tips for supporting memory and going back to work, and I came up with one -- that I developed when I was 9 or 10. When walking from one part of the house to another, and before you get there you forget where you were going or what you wanted... walk back to where you started and stand there until you remember, or just give up and figure it out later.At the time I thought this was a rather normal course of events!
I keep having these aha! experiences as I learn about Lyme -- reading about symptoms, experiences, and looking back at my life and seeing things in a new light It's pretty freaky.
I know I'm embarking on a major shift in my life, and I feel so many emotions: glad I finally know, hopeful that treatment will help, afraid that treatment won't help, or will make things worse, anxious, confused by the complexity of Lyme, frustrated by the paucity of care, disturbed by the politization.
I'm sure that you all have been there done that, or are still doing that, but I have to say I'm just a wee bit overwhelmed.
Thanks for being here -- just knowing there is a group meeting place to talk about Lyme with people who have some experience.
My husband and sister, my two best friends in essence, are supportive, but are having trouble grasping even the basic facts about Lyme. I'm spoon feeding them info, with hopes that they will be able to take it in a bit at a time.
OK. and I do have much to be grateful for, but not mentioning it now as it is my time to whinge.
CaliforniaLyme
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W E L C O M E ! ! ! *!))!*)!)!*)!*!)*!)!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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bettyg
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welcome k! yep, welcome to our non-exclusive club where you will get lots of education/support when you need it during the deep days we all get!
i'll send you a pm, private message, with my newbie links/advise in it.
i'm pretty sure the UNDER THE SKIN LYME DOCUMENTARY is in there, but if not, check right now in ACTIVISM BY KRIS KROFT, one of the folks involved in this important lyme project!
they have a "trailer" to view IF YOU HAVE HIGH-SPEED INTERNET; folk like me with dial-up can NOT view it.
it's 20 minutes long and will give your family/friends extra knowledge what it is like to have lyme and all the political implications plus health insurance NOT paying our lyme bills, appts., labs, blood tests, etc!
you had a wonderful, informative write-up; thanks for telling us so much about yourself. Thank you for NOT posting in continuous long blocks of text that we neuro lymies, like me, can not read/comprehend! that is so much appreciated by many of us here.
when you have a medical question, post it there. when you need SUPPORT, post here.
need a LLMD, LYME LITERATE MD, post in seeking dr. and put the STATE and NEAREST LARGEST CITY IN TOPIC TITLE so folks from your state can pitch in right away to help you ok! i'll send you my welcome package before my lyme mind forgets!
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As you were speaking (or typing) you reminded me of my whole life as child. Adapting... figuring out how to remember things. And thinking that everyone went through the same things I was going through....
It wasn't until my sister was re-infected in 2001 that we all(my whole family, 11 in all so far) figured out that we had Lyme.
I was second to figure it out.... Well I didn't exactly figure it out for myself. My loving, kind and wonderful sister would not stop bombarreding me with the fact that I had so many lyme symptoms.
And I kept fighting her, because I would say... "But I've had that my whole life" and "Everyone has that".
But being the wonderful sister she is, she didn't let me worm my way out of it, and she eventually wore me down (being the stubborn person that I am).
So I thought I will take some doxy and I will prove to her I don't have lyme (because I won't herx from it)
Boy was I wrong! That was the worst pain I ever had. But it has gotten better and I thank God my sister was so presistant. If she hadn't none of us would have found out and we all wouldn't be improving today.
My point to this story (yes there is one) You never know how many people in your own family may have it. And if you picked ticks off you as a kid, your siblings probably did too, and maybe your parents. So the more you let them know what all the symptoms are, maybe a bell will ring in their head. Or maybe you may have to bash the bell on their head. (j/k)
Thanks for your story -- I just read it online, and I have to say I'm grateful that I have not been as critically ill as you - - though I have had major health problems and been disabled by this thing.
I'm still going through a daily cycle of emotional reactions to finding out I have Lyme, and putting together the puzzle pieces as I read and read.
It goes soemthing like this:
I'm afraid I've become a bit obsessive about it and I'm having a hard time thinking about anything else which is not that great for my mental health.
I have quite a week coming up with doctors appointments and still trying to get back to work -- I own a business.. Posts: 112 | From RI | Registered: Jan 2007
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posted
I must be getting better! I truly must be getting better because for me going back to the room I was in to remember something was something I would have to do several times a day. Also don't ever interrupt me when I am in the midd;e of a sentence or I will have no idea what I was saying. My memory is still bad. I daughter will tell me, Mom we talked about this yeasterday and I told you what i thought!" I tell her rmemeber I can't remember like I should yet but I will soon.
Posts: 538 | From Iowa | Registered: Apr 2006
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