About this Site

I am hoping to achieve several things with this website:

  • It will serve as an adjunct and support to my book, Fight the Good Fight; Scenes From the Immune System Wars
  • It can be a place for information to be traded.  3. Hopefully it can become a safe place to offer support and to ask for it.
  • It can become a database of doctors and treatment centers that are familiar with particular disorders.

So far, I have written about 50 odd personal essays about my experiences being sick with chronic illnesses related to my immune system. These  essays are my way of dealing with something that is way bigger than anything else I have ever faced in my life.  It is, in every sense of the word, overwhelming.  Because I have always made sense of my world through writing, I have decided to write my way out of the dark corners of chronic illness.  In the process, I hope to bring others with me.  There are many of us.  We are invisible, yet we are legion.  I have found that we lurk on websites and in doctor’s offices.  And, we need one another.  This is a long and treacherous road we are on; each path different from the next.  Yet, I think knowing there is a companion out there that cares and that might have some useful information, is sometimes all we need to take that next step into the darkness that surrounds us.

There are so many things I wish I had known.  If I had, I would have not made so many agonizing mistakes.  For instance, I did not know that some pain specialists (many) are charlatans.  Pain management is not well regulated in this country.  If only someone had told me what I should look for.  But, I got educated on that subject and I want to pass it on to you.

Why didn’t my immunologist tell me that patients with CVID (common variable immuno disorder) often develop rheumatological disorder?  It would have saved two years of agony and searching for doctors and causes?  I eventually ended up at one of the Mayo clinics.  No one else could put the puzzle together.  But that is really not acceptable.  Why is our medical community so fractured and what does that mean for those of us with multiple issues?

The issues seem endless and so do the questions.  I suppose that is the very definition of chronic: it never goes away.   There is so much to absorb and so much to accept and learn.  We have to find ways to cope.  This book and this website are part of my coping mechanisms.  I hope that by sharing them, I can help you cope too.

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