Resource page more than a blog.

I think of blogs as frequently updated journals.  This is not that kind of site.  I set this up as a resource for my family and for other porphyria sufferers.

But, it is not a cobweb.   I am notified of comments and I try to respond in a timely manner; that, of course, depends on health and schedule.

Be well, pray.  God loves you.

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2 Responses to Resource page more than a blog.

  1. Reina says:

    Hi Greg!
    I just came across your blog while I was searching on porphyria. I hope you manage to fight it well. It’s great to see that you put effort for raising awareness about it.
    However, at the moment I am so drastically sad and confused because my fiancé was diagnosed with porphyria last week and since yesterday that he is out of the hospital he has changed a lot, namely that he told me we can not get married anymore. You can imagine how seeing him suffering and this last decision ruined me.
    Now I am reading about it and I have a question from you: is it really not possible (as he thinks) to live a normal life with porphyria?
    I would be grateful if you give an answer to me
    Best of luck to you

    • Greg says:

      Hi Reina,

      It IS possible to lead a normal life; it just takes commitment and a lot of work. And, it really helps to have a committed, focused partner. My wonderful wife really helps in so many ways…she can tell if I am “slipping” into a problem as the toxins build up, she helps me keep track of what foods are ok and which ones cause me problems, and she picks up some chores that are troublesome for me (such as mowing the lawn and cleaning with solvents). There are some disruptions, such as when I just don’t feel well enough to do something.

      BUT, it can be managed. I have worked my whole life, I earned a degree from Georgia Tech, we have done some remodeling ourselves and do our own landscaping. It gets a bit harder with age, after about 45 or so. It does help that for the last 25 years I have been working in situations that allow me flexible hours.

      Critical: keep a meticulous food log (it is easy to identify absolute triggers; much harder to identify some of those things that just aggravate porphyria), be very careful with soaps, avoid dryer sheets and anything that has a perfume.

      Don’t give up on your fiance. Keep in mind that confusion, depression, and anger are part of the porphyria package.

      Pray! Try some of the links under the “Totally Off Topic” listing on the right side of the page.

      Oh yeah, another thing that really helps me is chewing glucose tablets, these can be found in the pharmacy section of grocery stores and Walmart (on-line store). I also use powdered glucose that I purchase off of Amazon. Powdered glucose is used for baking and in brewing. I happened onto this because the medical response to my attacks was IV glucose and painkillers…so, I figured why should I wait until it is that bad? WARNING – danger of tooth decay. Rinse very well.

      Greg…

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