My Responsibility

It is my responsibility to manage my porphyria.  This is not to take away from all of the support that I get from my beautiful wife; I don’t know how I would manage without her.  But, the bottom line is that it is up to me.  If I don’t eat enough of the right foods, avoid triggers, exercise, keep the air filters clean, etc. then all her help is in vain.

There is no excuse for giving up because it is too “hard” or “not fair”.   I would love to have a drink of Sweetwater IPA, some dark rum, or a great pinot noir; but, the then I would be really bogged down for a few days.  I would really like to quit work and concentrate on feeling better; but, then I would have to rely on handouts.

Anyone with porphyria has to make these choices.   Can they fight it or just give in and suffer the consequences…that is the question.  But, the consequences are not just on the person with porphyria; the resultant mess affects family members and friends, too.   It is heart rending watching a family member with porphyria not eat properly, get tattoos, use hair dye, etc…the resulting pain and suffering is mind numbing.

One foot in front of another.  One day at a time.  Life is much better when staying on top of this disease.

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2 Responses to My Responsibility

  1. Caro Rebora says:

    Dear Greg..
    I agree with you!!
    It is difficult but every day we must make the decision to stay healthy. I wish I could have a coffee! and many other things .. but the important thing is to be good day by day .. no one can decide it for you. It is like a full time job. we must think every day what we need to stay healthy, what to avoid, what to eat, how much rest, etc.. and never give up! I do it for me and for my family, specially for my children.
    I love your blog, thanks for writing!
    I wish you a very happy Christmas and a happy new year, full of peace and love.
    Caro

    • Greg says:

      Merry Christmas and Happy New Year, Caro! I hope you have great holidays. Watch out for all the good and dangerous food and drinks during the holiday parties.

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