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Walking a fibro witches path

Walk with care, the path ahead is not well marked

fibro witch
16 August 1959
I am a pagan who has been on this path for some twenty plus years. I became ill with something during the winter of 01/02. Not knowing what was wrong with me, I went from doctor to doctor, and was tested for every thing from thyroid problems, various cancers, heart disease, even STD’s, finally I was tested for Rheumatoid arthritis and lupus. I ended up with a series of ‘diagnoses’ first pneumonia, then rheumatoid arthritis, then lupus, then fibromygalia, and back to LUPUS again. www.lupus.com

This disease has already killed a member of my family. I live in fear of dieing the way my Aunt did, calling family members and asking them to pray for her release from the pain of lupus. I know things have gotten better since her death, but not by much. I have also been told off and on (mostly by people, not doctors) that everything I was going through was just in my head, or even worse, that I was ‘acting’ to punish some one. Nothing can be crueler, than hearing that, nothing.

In May of 2004 I received full disability from Social Security, something I never expected. I have discovered no one plans on being fully disabled, never. My disability has opened my eyes to a side of life I never knew existed. One thing I have learned about lupus is this illness plays hide and seek with itself, and my body. Some days I feel wonderful, others I am in such pain I wish for release.

Disabled is such a strange and loaded word, especially when your disability is a hidden one the way mine is. Some days I am just as strong and healthy as I was before this illness struck me down. I have even been known to go from near death, to superwoman when my friends and family need me. Other days, I can’t move more than a few inches without help. Some times, something as small as doing housework is enough to drain me for a day or more. This illness, like other forms of arthritis can also be triggered by changes in the weather, by cold day, by warm days, by any days. Some days I start out well, only to be felled when I run out of spoons.

This was a major change in my life as I have always worked, and done well. I consider myself to be an accomplished and intelligent person, who liked to challenge myself mentally and physically when ever possible. I saw mental accomplishments to be far more important that physical ones. Among my mental accomplishments are, I was the 1994 American Society of Safety Engineers Student of the Year, and I have an IQ of 142, I read several periodicals, and books, leaning more toward current events, and history. I prefer the genre science fiction or speculative fiction to most ‘main stream’ fiction. I truly hate what this disease is doing to my brain as well as my body. I feel my memory fading away, and my knowledge going with it. I am more concerned that my mind will go than my body will.

When I was in my teens and starting to explore paganism I had an aunt who claimed to be a witch. As I learned and followed this path, I realized that she was a witch in name only. This and other experiences have made me cautious of people who openly flaunt being ‘witches’. I prefer the term pagan myself, although in practice I am a witch. I practice solitary Wicca, on a path that only I walk on.

One idea that I hold dear is that every witch walks his or her own path. Sometimes as I join with other witches, our paths might for a moment merge, and then separate, each slightly changed from the touch.

I married in my early twenties, and moved from my beloved Boston to Ct, where I stayed till I moved back to Boston in October of 2003 when my, at the time, husband and I separated. We are now divorced. I was able to take my Keeshond, Byron with me when I left. He is more than a companion he is a friend. When I have no one else, I have him. I also have four cockatiels, four large fish tanks, with assorted interesting fish. I happen to love the unusual fish, the oddity that no one else has, or would want. I have a total of nine fish tanks, the others are not hooked up at the moment.

I live just north of Boston, close to the T so I can travel into the city for my many doctors’ appointments. I see a total of six, yes SIX doctors at the moment, all in treatment of this rotten disease. One of the ways I am fighting this illness is with a lot of medications, lots of medications, and a total of 37 pills a day. I am determined to fight this disease and come out from this entire stronger healthier person.

Come join me on my journey, I move slowly, I worship the goddess, and it should be quite the adventure.

I have split my journal into several 'custom' subject lists. They are
1- Girly Stuff (mostly about clothing, jewelry, shoes)
2- TMI Pain (talking about my medical issues)
3- Dogs (Byron my keeshond, and other pet issues)
4- Lupus (my personal nemesis - I will win this war and heal)
5- Boston (All the things I love about my home town)
6- Red Sox (my home team, my number one interest, my religion)

If you don't know what lists you are on, just ask.


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And just so it's in writing in many many places, I do not want to be kept alive by machines, should my illness or anything else put me into a coma.