Porphyria’s Twin

Seven days on prednisone (the stuff I love) and yet I have decided to wean myself entirely. I want to see where I am.

And I am currently convinced that if what I have is not porphryria, it is Porphyria’s Twin.

I think back about my entire life and how many long nights I have been awake alone with strange thoughts, spending my time covering my skin in elaborate plasters for the latest eruptions that whatever mysterious forces or exposures have caused.

A very Gothic life in many ways. Sleepless and with groans and shadows. And blisters and sorrow.

I can see dark symptoms in both my grandmothers, in my father and mother, and in the siblings with whom I share blood relation.

This does not mean I think both sides have this rare disease, but that indeed I do think both sides may have the sorts of genetics that manifest with neurological symptoms, and perhaps someday tests and medicine will learn to diagnose and help these complaints, these agonies.

And if it all turns out to not be porphyria, if finally there is a better test and doctors find that indeed I have the lupus that they have been testing me for for 27 years, then I shall blame lupus for making me think I have porphyria!