The Miraculous and Unexpected Happened

August 15th last year, I found myself on a table in a fluoroscopy lab as a resident, assisted by a lab tech, took directions from another doctor yelling from the other room on what would end up being the 4th or 5th attempt at a spinal tap with my body barely responding to the local anesthesia they were using on me.  To be fair to the resident, most of those jabs weren’t his, and he would have gotten it his first time if they’d realized I needed a larger needle than most people.  The pain shot and burned around my rib cage, following the nerves there like electric wiring; it pooled in my hips and ran down my legs over and over again.

I’ve been meaning to talk about that day before now, to talk about how the pain I experienced was nothing less than ordeal work that has changed me forever.  I no longer fear pain like I did before.  I no longer worry if anything they do to me medically is going to hurt (though I still am not that fond of having my eyes touched, which happens regularly enough that I know I can get through that, too).

What I remember, though, is that my God was there for me, and in that moment of agony, I felt his hand tightened around mine.  I heard his voice tell me that everything was going to be okay, but it was important for me to experience this.

A month later He would drop the bomb that He was leaving.  Somewhere in there I handed the management of my healthcare (note: not my health, but healthcare) to Odin, who promptly lit a fire under my ass and forced me to stand up for myself in a situation where I wasn’t getting heard.  The day I saw my new neurologist, I spotted a valknut hidden on the side of some hippie van covered in flowers in town.  I knew things would work out the way they were supposed to…  I was still skeptical.

I had another follow-up about my pseudotumor cerebri two days ago, and the days leading up to it were horrifically stressful.  The only thing they’ve found helps take some people into remission is weight loss, and since I have a history of eating disorder this has been the part of this experience I’ve struggled with this most.  And to make matters worse, I had managed to gain weight instead of lose it, though to be honest beyond worrying about getting lectures from well-meaning doctors, I haven’t cared.

My appointment on Monday came with me not being able to see one super subtle thing on one of my visual test.  There were some extra beeps on my visual field test.  I was absolutely certain that my vision was going, which is the big fear of the disease.  I was sure I’d gotten worse.

I commented to my mother that what I really, really wanted to hear was that there was no sign of pressure and that it was time to wean me off the diuretic that has started to effect my autonomic nervous system and give me more heart issues than usual.  But I’ve been at this chronic illness thing for 30-some years.  I said that I didn’t expect to hear any of that; I no longer hope for the best but accept that things may not change.  That is a hard thing for someone to understand who doesn’t deal with this level of illness, but it’s the very best place one can be in coping-wise as long as they don’t let the darkness of it all swallow them…  Because that’s the danger of it.

My doctor came in, read all the tests, and checked out my eyes.  And then the very last thing I expected to happen happened…

He said the words, “I see no signs of pressure today.  I think, despite your weight gain, that your neurologist can trial tapering you off the medication.”

I started to cry the moment I got out of the clinic.  Yesterday I was prone to weeping in joy.

But as the shock has worn off, I started to realize something…

Last January my friend acting as Volva yanked something off of me in the middle of seidr, and it was terrifying.  My friend who very obviously was introduced to me in a way that I still can’t entirely believe wasn’t orchestrated in part of this story by the Gods.  But what was even more terrifying in an exciting way was that I felt something open up and start to drain at the back of my head that night.  And while the process has been slow, looking over all the reports from doctors between then and now shows that in the last 7 months the pressure in my head had started to wane where before it had been getting worse.

I rarely share publicly words from my private journal, but I feel compelled to here.  What I had asked that night in seidr was what it was that Odin wanted of me.

The answer was knowledge, knowledge, knowledge (by the end she was yelling the word).  She said she saw me with a black veil over my head.  She saw the iridescence of black feathers.  My left hand was a raven’s wing, and in my right hand was a rock.  I was standing on a labyrinth that had been smoothed by water.

It was at that point that I asked where I was to start.  First, she screamed and doubled over in pain, which…  Everyone that has ever looked into my wyrd has had this sort of reaction, or they’ve at least spoken of pain.  Much pain.  It’s pretty fucking terrible to understand that the pain I feel reaches out that far.  Someday I may get enough bravery gathered about to ask why that is…

But she told me the labyrinth was my brain…  Not my mind, but my brain.  She said something was at the back of my brain blocking “it.”  It was effecting my arms.  Then she yelled, “Careful!  Careful!”  She proceeded to feel for me, and climbed onto the ground.  She found the woman next to me, and grabbed onto something in the air and yanked.  However, I knew she was aiming for me, because when she did that I suddenly felt something dislodge and pull from the base of my skull.  I felt the pressure in my head drain.  Later she said it was like a parasitic worm that had been wrapped about my chest. – from my personal journal, 1/13/2015

I hadn’t thought much about that night in my living room where I had my first experience with seidr until this morning over coffee.  The skeptic in me is hard-pressed wonder if this was just a coincidence, but the believer in me will win out in the end.  Checking over my neuro-opthalmology notes, in January the signs that I had pressure in my head had lowered slightly just a 2 weeks after this experience.

Now those who know me in my personal life know that when I talk of the Gods, it is with belief and all the conviction that goes behind it.  There are layers there, though, where somehow I didn’t believe as much as I do now.  My utter avoidance of all things Team Heathen turned into a brilliant line of where Odin (Woden?  He’s preferring Woden lately) tipped one domino stacked against a hundred more, setting off a chain reaction to reveal that He’d always been there.  Always.

Always.

I am a mystic.  I am a believer.  And I am a woman of both science and faith…  And perhaps that “and” is sometimes more of a “but.”  While the medicine and modern science was 100% necessary and the right choice, I know that in the end this disease that has no real treatment, no cure, no explanation as to why it happens is/was in the end is managed and treated by Odin.  I may not be in remission.  I may not be able to get off some of my pills…  But part of me rests in the comfortable place where Odin has this.

Out of what feels like a million novels about the Gods and Spirits stepping into the lives of others that I feel like I’ve read, I didn’t see this coming.  And perhaps that’s what this situation has taught me the most…  There are degrees of belief and faith in the Gods.  Sometimes those beliefs don’t have to be tested.  Sometimes the Gods metaphorically pull the tablecloth out from under the dishes without them breaking over dinner, and you’re left in quiet shock, eyes bugging, because your life has suddenly became the makings of fiction.

And your heart explodes with love for Them.  You can never go back to the way things were before, but no matter what happens you also realize that doesn’t really matter anymore.

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World Rare Disease Day 2015

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Chronic illness selfie.

Today is Rare Disease Day. I was going to record a video, but ironically my rare diseases got the best of me the last couple days.

In the middle of a dental emergency gone medical, I have been to the dentist, the ER, urgent care, and the cardiologist in a little over a week. By the end of this week I will have been on 3 types of antibiotics, 2 narcotics, had a shot of morphine (or as I like to call it, worthless), and received a new diagnosis or two that I already suspected I had, since it’s related to the other 3 rare diseases I have.

I have dysautonomia and hyperandergenic postural orthostatic tachycardia syndrome, which means that my autonomic nervous system flips out when I not laying down. The autonomic nervous system controls all the things your body does that you don’t have to think about: blood pressure, heart beats, breathing, sweating, digestion, fluid regulation, and so on and so forth.  Something about the infection in my jaws and teeth along with the stress of it all set it off this time in an obvious enough manner that got me diagnosed. I’ve gained 10 pounds in the last week due to swelling. I’ve been in a constant state of tachycardia (fast heart beat) and palpitations (noticeable heart rate) along with high blood pressure as well. 

I get sweet old lady compression stockings to go with the cane I use to stay upright. My health insurance doesn’t want to pay for them, much like they don’t want to pay for an ultra lightweight wheelchair I’m trying to figure out how to get so going grocery shopping doesn’t take me out of play for 4 days afterwards due to fatigue. Let me tell you, compression stockings that go up the entire leg? Pricey. Like pair of quality jeans expensive.  Meanwhile I’m also wrestling with the state over SNAP benefits, because we can’t afford the multiple food allergy and celiac (medically suspected but not diagnosed) diet otherwise that keeps us all healthy… Which is also low in vitamin a while high in potassium and sodium.

So my rare diseases, which all but the pseudotumor cerebri my husband also has… Every day is rare disease day for us. We live with Ehlers-Danlos Syndrome Hypermobility Type, Dysautonomia/POTS, Wolff-Parkinson-White Syndrome, Pseudotumor Cerebri, multiple food allergies/intolerances, fibromyalgia, and other things I’m too foggy to remember every day.

But we manage and we smile. We have as much joy as sorrow. And we even have some good days.

I’m going to talk more about these conditions this year, because it’s part of my truth and story. I’m a disabled person. I’m not going to stop talking about it… Well, okay, I’ll probably hold off on until recovery after getting 6 teeth removed on the 10th. I don’t plan on blogging while on narcotics (except, you know, today…).