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View Diary: I am Mike's Daughter w/Update (186 comments)

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  •  Millions (9+ / 0-)

    UnaSpenser, I'm watching the country gear up for swine flu, spending billions of dollars and involving thousands of people.  Meanwhile, there are millions suffering from Lyme disease, diagnosed or not.  I am beginning to think that Lyme is the real pandemic that should be getting the same kind of attention (or more) than swine flu.

    I am on the same path as you are.  I've had Lyme for I don't know how long.  I've been sick for five years and it has just been worsening for all that time.  I may have had it for as long as 18 years, the first time I had symptoms of fatigue and was diagnosed with chronic Epstein Barr (never having had mono that I knew of).  But I got much better after that and led a very productive life, so I tend to think I got Lyme in the last five years.

    Last month I got my first CDC approved positive Western blot test, after years of negative ELISA tests.  This is after having been treated by a doctor who specializes in Lyme for six months.  Now we're trying to get the IV antibiotics treatment.  I don't know what's going to happen with my insurance yet.  It's been three weeks just trying to get the IV people to respond.  I'm not sure what the hold up is -- could be insurance but the doc has contacted several different ones and none of them have contacted me as they were supposed to.  Meanwhile, I continue with the oral drugs.

    I hope we are able to get real care.  I relate to your diary more than you can ever know.  It's the guilt and remorse of not being able to be the mother I want to be, and have worked to be, that kills me the most.

    We are throwaways in this society.  Even after having been an over achiever all my life, I'm a throwaway now.  Productivity is everything I guess.  I thank heaven for my S.O. who has saved me really.  He has been devoted to me and without him I don't know where I'd be right now -- probably dead.  My family has just decided to ignore the situation even though they know how sick I am.  It's too much trouble for them, I guess, even though they are all very comfortable in life and not hurting for anything.  They're too busy.  It's amazing what you find out when you get really sick, and are really in dire straits.

    •  Yep (3+ / 0-)

      Even after having been an over achiever all my life, I'm a throwaway now.  Productivity is everything I guess.  I thank heaven for my S.O. who has saved me really.  He has been devoted to me and without him I don't know where I'd be right now -- probably dead.

      I can completely echo all of this. Without Charles, I would be dead. And I still feel the weight of loss of productivity dragging at me from all sorts of societal messages, as I'm sure you do as well.

      We are all throwaways - Lyme disease, kidney failure, fibro, any sort of debilitating disability (and isn't that why it's called a disability?). All of us. We are society's castoffs, and they'd rather that we just remained in the shadows where we didn't have to be seen or acknowledged, but the time for that is long past.

      Living kidney donor needed; type B, O, or incompatible (with paired donation). Drop me a note (see profile).

      by Kitsap River on Thu Oct 08, 2009 at 10:30:29 AM PDT

      [ Parent ]

      •  We should keep in touch (2+ / 0-)

        kitsap.  My email is in my profile.  I don't manage email as well as I should but I will get to it in fairly short order if you send me something.  I'd be happy to give you my phone number.  Maybe we can help each other.  Who knows?

        Take good care, my friend.  Be gentle with yourself.  We have to get better, somehow.

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