Discussion in 'Fibromyalgia Main Forum' started by karynwolfe, Sep 12, 2010.

  1. karynwolfe

    karynwolfe New Member

    Continuing from here:


    My bedside looks the same way. I have a box I keep all of my medications in, that sets underneath my nightstand nice-and-neat-looking. But within a few days the ones I use the most eventually find their way back on the top. Having to explain ourselves is one of the most irritating parts of it, I think. As if we don't feel worse enough already, anyone who stops by or spends two seconds "researching" our disease thinks they have the authority to give advice on something we've lived with for decades, thinks they suddenly know our bodies better than we do. It makes you want to throw something at them!!!

    I have not had those tests done, but I DID recently get with my doctor to test me for various things, including some suggestsions from the board. My cytokine levels may be in there, somewhere... If they are I will post the results.

    I really have no words as far as your "dilemma" besides that, you are not alone, and I really do understand your thoughts. It's morbidly comforting to know I'm not the only one thinking them; I maybe even feel a little less crazy, less dramatic... I am in much the same situation. It's often hard to even realize the situation we are in. It's hard to imagine ever getting to this place, until you are there. I feel as if I am at a place where I have to get something done, have to make some type of progess, before things get much worse, because if they do.......

    That's why I'm currently trying to collect some "proof" of my immune system being dysfunctional (I had made a post here not too long ago), hoping that if something DOES get worse (maybe even just worse before it gets better?), wherever I end up will understand that it's mainly these infections bringing me down. I feel they'll be more likely to understand, even if they dont' understand M.E., if they can see something on paper that 'proves' it.

    I have a very strong faith in God and I know that no matter what happens, I trust Him. But to some, that means ignoring that anything bad could ever happen...and that's just not part of "real life" to me. Some may say that by "preparing" for the worst then you're inviting it to happen and not really having Faith, but to those people I say, then why not cancel all the insurance on your life and your cars and your homes, because having back-up just means you lack faith. ((shakes head)) It doesn't work like that, and for all I know these precautions we take could actually be a sign from above so that things work out for the best, no matter what situation arises...

    I am sorry for your situation as well, but I also feel less alone knowing someone out there really understands what this is like, and is avaliable to talk about it. I hope others can read this, and feel less alone as well. Especially those--and I know theyr'e out there--who read, but are too ill to respond themselves.

    We'll all get through this somehow.