That went about as well as could be expected….

I told Mom & Dad last night that I’ve made my decision to participate in the PAH study.

They were not pleased.

Rather sad and somewhat upset actually…

Mom’s comment actually disturbed me — she didn’t want me to do it because she didn’t want me to die getting the RHC.

What do you say to that sort of thing?

Anyhow, Dad was upset too but didn’t say anything quite so drastic and he looked so sad.


They are both hoping that I drop out of the study or that Hawt Doc finds out I can’t take part once initial evaluations are complete.

I dunno what to say.


5 thoughts on “That went about as well as could be expected….

  1. I’m sorry hun. I think it’s part of dealing with a chronic illness that other people don’t understand. For me, I would rather risk dying sooner if it meant a chance at getting better/feeling better/living a better life, and often other people can only see the threat of death. I totally understand that, but it doesn’t make it any easier.
    I hope your parents are able to support you when it’s time.

  2. I’ve been meaning to ask…I went back through your entries a little while back and I couldn’t find an explanation for Sally. I know it’s a chronic illness and all but…I’m ashamed to say that I don’t know exactly what.
    Is it okay to ask?

    1. TeaseMeGirl

      Oh no, please, by all means, ask anything! But I may give the odd obscene and crass answer in the future depending on the question and my mood ^_^
      To be honest, I don’t think we ever got an explanation for SALLY. For some reason it just happened. As my endocrinologist put it, “Just plain shitty bad luck.” I don’t know if that was the question you were asking or if it even answered it.
      If you’re asking ~what~ SALLY is, it’s scleroderma. Like most auto-immune diseases (very,very generalized explanation) something stressful happens to your body, be it consecutive stressors or a one shot deal, and it just goes haywire.
      With scleroderma, for unknown reasons, the immune system turns against the body, producing inflammation and the overproduction of collagen/scar tissue mostly affecting the skin. So it gets hard, stiff and generally unattractive. In my case it not only affects the skin, but it’s all the organs of the body.

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