About 6 months ago, I came to LymeNet to try and find a dr in the NY area who tests for Lyme. I got a flurry of prompt and informational responses, of which I'm quite grateful.
My test was delayed until recently (outstanding battles with the insurance company for immunological responses to food, which apparently doesn't "count" as a food allergy, blah blah blah).
I got the test back a week ago. It was no surprise it was positive.
My partner also has Lyme. My symptoms have persisted long before I met him, yet my sister can't shake her inclination that I may have "contracted" it from him.
Otherwise, my family is super supportive. I'm not sure they really understand it though. I thought about having them watch "Under Our Skin," but perhaps only after they understand that, while the jury is out on the ability to contract it sexually, I still, most certainly, did not.
Mostly, this is an introduction, I suppose. A hello, and a "how on earth do I already need advice and support!?!"
I'm having a really hard time identifying as "diseased." I mean, I've been not well for a long time, and certainly am relieved to finally know what from. Because I'm unable to identify with the diagnosis (it's just so hard to say "I have lyme. I cannot donate organs. It may be advisable to not get pregnant"), it's hard for me to take seriously the treatment.
What was your experience on "getting to know yourself as yourself with Lyme" (which I think is an essential step to transcending the disease)?
Posted by mom2kids (Member # 31972) on :
I have been sick for about 30 years off and on, that's when I got original EM rash at least and no treatments back then. Several "mysterious" illnesses over those years along with several more tick bites.
I got very sick in 2005 and since 2007 DX'd with fibromyalgia, CFIDS, EBV, HHV 6, blah, blah, blah...was barely able to get out of bed for a couple of years and was fired from job in 2006.
I got depressed and also grieved the life I used to have for about a year. I finally decided to make it into something positive, studied Buddhism, learned my limits (well am still doing that) and am thankful for so much good in my life.
When I figured out that I probably had Lyme, not too long ago, I was like "oh well" another invisible, "imaginary" illness to add to my resume. It's hard for me to think of me as "sick", I don't tell many people, too stubborn to ask for help...
I have accepted my illness and I don't dwell on it. I don't know if this is what you were looking for, but I sometimes veer off course...sorry.
BTW, welcome to our "unfortunate club".
Posted by Tincup (Member # 5829) on :
Welcome!
Sorry you are having to deal with Lyme. Not fun, but manageable. Glad you finally have answers to some of the problems you've had too.
Yes, have them watch Under Our Skin. Now, not later. That will explain a lot and open the door to other good things.
And everyone likes a good movie! You can even provide the buttered popcorn!
Lymetoo: Oops! Sorry, still trying to figure out how to post and add a specific reply.
Yes, I've found a dr. in Columbia who I see. I split my time between the midwest and nyc, though I wont be able to get back to him til Dec. so I may need to be a two doc kind of gal.
I will definitely check out these videos.
Tincup: Yes, I think I should. I live near my sister, and she's the most resistant. For the most part, my family doesn't understand the potential severity (since despite knowing ive been mysteriously sick, my symptoms are pretty unseen as I'm only 23; so I caught it relatively early). Thanks for the encouragement!
mom2kids: Yes! It's exactly what I'm looking for. And I agree; the disease does not have to overtake "You." But, for me, I think I need to dwell on it for a bit before I can overcome it. In order to accept it, I mean. Thanks for sharing your story.
Posted by mom2kids (Member # 31972) on :
bmannke, dwell away. You have to wallow in the situation for a bit in order to overcome it, accept it and grieve over what used to be.
I still go through the whole process from time to time, especially when I am having a really nasty flare.
You should def get your family to watch "Under Our Skin", but it still may take some convincing to get them onboard and it may take awhile too.
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