Where We Begin: As Much of the Story as can be told.

September 20, 2011 at 7:03 pm (Medical, Spiritual)

Dying for a diagnosis. It sounds like the beginning of just about every House, MD episode. And there’s a reason I watch that show with religious fervor. If I could meet Gregory House and his team for an hour or two, I would be willing to go to the brink of death to find out what it is that has plagued me for the last four years.

The short story goes something like this: about four years ago, I started showing a variety of symptoms and started seeing a multitude of doctors to try to figure out what was happening to my body. Some of them included severe chronic diffuse pain, aphasia (the inability to produce words on command), difficulty moving my limbs, tremors, memory loss, bouts of extreme nausea, confusion, fatigue, a marked drop in stamina, unexplained weight loss, fevers of unknown origin, and probably other stuff I’ve since forgotten.

Right now my “official” diagnosis is fibromyalgia, although even the doctors know this is a crock. I do not show the recognized symptoms of that disease, but rather fall into the category of “someone who has legitimate pain issues but we have no idea why”. Without this fake diagnosis I would not be able to receive treatment from my pain management doctor, so we all play along. Other diagnoses that have been tossed around include MS, lupus, HIV, cancer, Cushing’s, and “something wrong with your CNS”. However, none of them have been seen in a positive test.

Currently, the big PITA is that I seem to catch infections very, very easily. In the last four years I’ve had over 15 different bouts of infection or disease, and right now I am getting ready to undergo treatment for inactive TB. In order to do that, I had to come off of the most effective narcotic pain killer I had found (Fentanyl transdermals) because the TB meds caused me to metabolize the Fentanyl all at once, causing a dangerous interaction. So since July, I have been going through opioid withdrawal that has been (medically) compared to heroin withdrawal, except in slower steps. I am currently “free” of Fentanyl, but am still experiencing withdrawal symptoms a week and a half later.

So that’s a little insight into part of the reason I’ve started this blog. I have a lot of friends and family who want to keep up to date with what’s going on with me, medically, and having a repository where I can write it down once and have it be accessible to all of them would be very useful to me.

However, it is a standing rule of this blog that anyone that submits diagnostic material (whether by comment, email, phone call, or personal contact) that is not a medical professional, will be given one warning before they are banned/ignored/cursed with boils or turned into a frog.  I have a great team of doctors, medical advocates, and selected people in my life who are allowed to play House MD with me. But outside of those people, I get very annoyed by people who try to diagnose me based on anecdotal evidence (“My cousin Shirley had something like that and she has porphyria”) (Which I’ve already been tested for, FYI.)  I am not interested in unsolicited internet research based on anything I post on this blog. I am not interested in recommendations for non-alliopathic treatments (herbs, energy work, acupuncture, etc).

Onto the other half of the reason for the blog.  As you may or may not know, I am a neoclassical Shaman. What this means to me is that I serve the community by providing necessary spiritual services based on my ability to communicate with Spirits, Gods, Ancestors, and the like. Let me explain a little more about my personal path of coming into my shamanism so that you might better understand.

About eight years ago, I underwent a spiritual crisis of epic proportions. During that crisis, an Entity that did not introduce itself to me said that if I agreed to do His work for the rest of my life, and to surrender my hopes and dreams of what my life was going to be like to Him, he would get me out of the crisis and onto a better life. I thought about it for three days. (That’s how epic the crisis was.) I “signed on the dotted line”, and within a short amount of time my life changed drastically. It took me a while to figure out who he was (the Norse God Loki) and what He wanted from me (to work with those who suffer from mental and spiritual afflictions, to speak hard truths, and to speak for those whom normal people would happily overlook – the disabled, the mentally ill, the genderweird, the queer, the obese, the mulitple, etc – among other things.) As time went on, I also developed relationships with other Deities. Although I consider myself primarily a Northern Tradition Shaman and have working relationships with most of the Aesir and some of the Jotunar, I also work with Hanuman and Ganesha (Hindu), Erzulie Dantor and Maman Brigitte (Vodun),  The White Lady of the Forest Fire (Clan Tashlin), and most recently Baphomet (whose origin can be attributed to many different traditions).

It is for Baphomet, primarily, that the spiritual part of this blog will exist. It was He who told me that my journey had spiritual significance – everything from dealing with disability to suffering from withdrawal to likely dying without knowing what was causing me to die – and that if I was to live up to my duties as Shaman, my devotions had to include sharing my spiritual insights on this process. It’s not just me, either. I have family and friends who are also suffering from various aliments, some of them diagnosed and some of them not, and their stories will likely pepper these pages as well. Baphomet is a God of those who are forgotten and dismissed, and nothing feels like social dismissal like being chronically ill for years, getting worse in front of people’s eyes, and not being able to give a pat answer to the question you hear most often, “So what’s wrong with you?” or “How are you feeling?”

People disconnect with you when you can’t answer that question. They don’t want to hear a half hour legacy of bits and pieces of your experience. They want to hear something like, “Cancer.” or “AIDS”.  Something they can relate to, that they can label and put in a box. Maybe even something they can raise money or awareness for, if they’re that sort of person.

And in a deeper sense, we’re all suffering. And everyone’s suffering is deep and meaningful to them. There is no great ruler or scale that says my suffering is greater than yours. Suffering sucks, it hurts and it keeps us from enjoying life fully. And I have a lot to share from my Gods and Spirits and Ancestors about how to turn suffering into an expression of spirituality.

Okay, I’ve typed quite a lot here (for me). I am hoping to get dictation software soon to make this process easier for me. (Wanna donate? Drop me an email at awesome.del@gmail.com. My birthday is next month!)

I hope you have a sense of who I am, where I’m coming from, and what I’m trying to contribute to my community (communities?) by sharing my thoughts and experiences.

I’ll leave comments open on this post, although it will be my practice to close comments on my ‘medical update’ posts to keep y’all from playing House. Play nice.

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1 Comment

  1. Amy Knoch said,

    It is good to hear from you again after so long. Life being what life is I haven’t been around either, though I’m sorry that we lost touch. I’m glad to hear you have so many people working to find the root cause of what has been going on with your health, and hope that you will find some resolution.

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