It’s so hard to wrap my head around…

I flat out just want to be home. I would give up on this (so easily) to be home and laugh on the beach and just get a hug and kiss. I want to be real and keep it real. I want to leave go of it all and just walk out on something that’s so wrapped around me that I just can shake it loose, not even dancing hardcore. 

I want to go AWOL.
I want to run.
It would be a relief.  
But I can’t just run away with a problem, because I’ve found that they somehow pack it up into your suitcase too and your in a new place with the same problems. You must fix the problem and change your mind or the problem will just follow you to the ends of the earth. 
I am being stalked. By something the majority of the people do not believe exist. Or not at least the way I’ve got it. And that is scary.
You should be scared. As cliche as it sounds, it could be you next. And you would have to face a world of doctors who dismiss you and make you out to be insane or suffering from something completely archaic. You’re alone and your up against an institution that is so well regarded. Generally. 
There is more Lyme cases than AIDS. 
I cannot give blood if I have AIDS or other infectious diseases, but I could be sicker than hell and walk into the Red Cross and pull up my left sleeve and say, “Go for it…oh and by the way, in case you want to know why the wheelchair and IV in the left crook of my arm, I have Lyme. My list of symptoms would blow you away and take a page and a bit of your paper there. But no worries, right? I can give blood, although I have an infectious, horrible disease that is transferrable via blood….oh like AID’s or it’s cousin syphilis. Right. But its cool. You are a non believer. And just like the Christians think, you will be proved wrong on judgement day or sooner.” 
Where did the medical take a turn and stop helping people? People like me who a falling downhill faster than those Olympic skiiers. Where did we go wrong? 
But more importantly, how are we gonna get back to good?

2 Comments on It’s so hard to wrap my head around…

  1. raven
    October 20, 2008 at 3:38 pm

    These doctors are frustrating. It takes so long for the medical community to catch up when something like Lyme hits them. I wonder if they realize just how much damage and suffering they are causing. I can’t imagine they could continue in this way if they did.

    Hang in there. I know it seems like forever, but with luck, you will be home again doing what you enjoy.

  2. daisysmum
    October 20, 2008 at 7:20 pm


    I am learning so much, I am learning things I almost wish I didn’t know…of course our Daisy had loads of transfusions during her treatment, to think that she would be put at risk by the denial of your VERY REAL disease is irresponsible.
    I went to Blood Services and sure enough it is *not* listed!
    The medical-community’s denial is shocking and far-reaching. Thank you for educating us all so that we can in turn lobby for change ourselves.
    Many voices Nicole, many voices!

    Thinking of you every day xx Emma (and family)


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