Internal and External Pain

October 27, 2011 at 7:55 pm (Chronic Pain, Spiritual) (, , )

As someone active in the New Age/Neopagan religious communities, I am exposed to a lot of theories on the nature of pain and suffering, and what the “right” course of action is about it. Everyone has an opinion, and a lot of it is deeply based on the person’s own experience with their bodies and their understanding of the bodies of their loved ones. As an ordeal master, I know that there are several approaches to the spiritual experience of suffering and pain (or intense sensations), and different ones lead to different outcomes. When I try to cross-apply this knowledge, sometimes it works and sometimes it doesn’t.

I find that we have different opinions when it comes to the source of the pain. External pain, that which comes from an outside source and is usually on-purpose, like scourging or hook suspension, is seen as something to be experienced in the body. We revel in the neurological responses to pain; we “ride the hormones”, and allow those sensations to induce altered states of consciousness. We focus on the experience, and allow it to reside in our bodies, even if it is unpleasant or traumatic. Those that engage in these sorts of practices claim that the body is the gateway to the spirit, and by applying these sensations we simultaneously experience what human embodiment is all about as well as the feeling of the soul being a separate entity to the body.

However, when the source of the pain is internal, that which comes from injury or illness, is seen as something to be transcended. We use healing modalities that “push” the pain out of the system and replace it with light and ease. We encourage people who suffer to meditate and breathe, to allow their mental focus to leave the body and allow them to escape some sort of “bodily prison”. We rarely, but sometimes, talk about directly addressing the source of the pain and trying to heal the illness, but I don’t know any faith healer that is claiming to cure fibromyalgia or cancer or splondyosis or anything like that. They focus on the experience of suffering and pain, and try to remove that from the equation.

Having been through both experiences, I have applied what I have learned about pain management and embodiment to my chronic illness. I have used the same breathing techniques I have taught to ordeal dancers in order to endure greater amounts of body pain than they thought possible, when I am faced with the onset of acute, immediate pain that I cannot address any other way. On the other hand, when enduring ordeal, sometimes I focus on transcending the pain, particularly when I am walking “both roads”, and am responsible for the ritual in some way no matter how much suffering the ordeal is causing me.

I wonder, however, if this leads my faith about the body and suffering to a strange crossroads. I want to believe that the body is holy, and that our experience of being embodied is important as our role of enduring the human existence. I do believe that the body creates better and more useful pathways to the divine than most other means, including drugs. You can put your body through a variety of experiences in your search for the divine – you can deprive it, you can overload it, you can slow it, you can overtax it.  All of these may lead to some better understanding of the divine and your place within the Universe.

I also believe that suffering can lead to a feeling of decreased quality of life, and can limit what one can do with the body. Most of us have a natural aversion to internal pain, (even when we say we enjoy pain – I always ask masochists if they are *really* into pain if it’s okay if I break their leg)  and look desperately for ways to make the suffering stop, or at least give us a sense of ease for an amount of time.

What I’ve been stuck with is the dichotomy of this. If I am truly a body worker in my role as Ordeal Master, and believe that pain is meant to be experienced in the body as a way to understand the Divine, why do I differentiate internal and external pain? Why is hanging from hooks a holy endeavor, but having severe nerve pain something to get rid of or treat This is why (arguably “real”) tattoo artists don’t use lidocaine (a topical anesthetic) when tattooing someone – they’ve learned that the experience of the pain is part of the package, and a painless tattoo just isn’t the same. But boy howdy, if I am experiencing terrible menstrual cramps, I am the first one to reach for the ibuprofen.

I guess because there are times now, in my experience, where I am tired of listening to whatever message or lesson my pain is trying to teach me. I am a bad student. Part of me thinks that if I really documented how my pain plays in my body, I might receive an important key that unlocks my diagnosis. But because I’m a normal human being, I spend more of my time trying desperately to dull the pain, to transcend it, to create a life experience that feels less painful. Maybe I can endure external pain in my body because I know it has a beginning, middle, and end. In that vein, I know for certain that my internal pain has an end; it’s just not a thought most people find pleasant (death).

I know another shaman and we frequently talk about how much we hate the fact that we have to live in bodies. Since both of us are well-schooled in what the kids call “astral travel”, or having life experiences outside of our bodies, it can feel like an option to just take off, leave the disabled and pain-ridden body behind and just experience life in this liminal state. However, we’ve both been told by our Deities that this is not an option. We have to live a human experience, so that we can relate to the people we work with. Also, if we were meant to be spirits, not humans, They wouldn’t have gone through the process of giving us bodies to begin with.

So in a way, I’m glad I have options. When I experience pain, I can examine it and decide if it is better treated as external pain – and then go about allowing my body to process the pain, and feel it sit and ache in my muscles/bones/nerves; or as internal pain – and medicate and meditate and treat it so I can feel some relief. I think where I reside right now is somewhere in the middle, even if none of my current pain is external pain. (I can’t bottom anymore, really, because my body has used up its store of endorphins and other fun hormones dealing with my internal pain.)

On the other hand, I feel like I am sending pain mixed signals about what I believe about its nature. Is it a thing to be nurtured and felt, to be experienced and embodied, as part of my human experience? Or is it something to be transcended, avoided, treated, like some unwelcome parasite that sucks my life dry? Can it be both, or some hybrid therein, or is “pain” just too small a word for the various ways we experience suffering in our bodies?

I know that I believe all pain is sacred, even the pain I try to medicate away. Without my chronic illness, I wouldn’t be the person I am, and I believe the pain has taught me a lot about being human. I just like to vacation from school once in a while.

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Validation and Pain Management

October 24, 2011 at 5:45 pm (Chronic Pain, Medical) (, , , )

I don’t have a lot of typey-typey in me today, but I really wanted to write about this, so I’m going for it.

I got linked to this wonderful pdf by Sylvia Brallier, who is cool person who also suffers with chronic pain.

http://pain-topics.org/pdf/IntractablePainSurvival.pdf

It is a pamphlet-sized document about the treatment of “intractable pain”, or long term chronic pain.

I loved this for a few reasons:

1. It helped me come up with some new ideas to talk to my pain management doctor about. Although I have a “breakthough” med, he and I both know I take it every day as a compliment to my longer acting med, and not just at times where my pain is worse than normal. I would love to have some emergency med that I only took when my pain is really bad – like last night.

2. It addressed the silly notion, that I hear all the (expletive) time, that opioids cause pain and life is better if you just give them all up. I have heard this from actual doctors. I have doctors blame all sorts of symptoms on my pain meds and when I tell them that I would like to investigate other options, that I accept it could be the meds but it could also be a real physical issue. I had to leave a neurologist because he blamed everything, everything on my opioids, which he felt were way too much for someone my age.

3.It made me want to investigate further this idea that I am “sensitive” to opioids. We have noticed that my body loves narcotics, and while others can take ’em or leave ’em at will, my body lets me know under no uncertain terms when my bloodstream is low on narcotics. It’s not that I feel more pain, although that happens too, but that I start to exhibit signs of withdrawal. I wonder what causes this, if other people experience it, and what can be done to mitigate it without just discontinuing use. I mean, I’ve been thinking about going drug-free for a while to see what would happen once my body was clean, but the idea of no pain meds makes everyone involved in my life, including me, a little apprehensive. Also, my upcoming schedule doesn’t allow for such a time.

4. I really wonder if I’m a candidate for an implant.

5. Lately, with the whole Fentanyl experience, I have been feeling very ashamed of my need for pain management drugs. I feel like I’m letting people down when I consider going back on Fentanyl once the TB is treated. I mean, there are good reasons for me never to touch the stuff again, I know, but now that I’m more than a month clean of it, I know that my pain is no where nearly as controlled as it was.

6. I sometimes wonder if people really understand how much pain I experience. Last night it got so bad that I literally wept. And I’m not a big crier. But I was at “no more cope”, and I had no more interventions at hand (after drugs, TENS unit, massage, acupressure, and meditation/breathing) I just had to wait it out. It renders me completely unable to do anything at all. On a normal day, everything I do is weighed against how much pain I can tolerate. Even typing this. Even going to the bathroom. Even feeding myself.

So it felt good to read something about pain management that was effective and positive and helped me feel like I deserve to get some relief, even if we have no idea why I am in pain to begin with.

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Doctor Ethics and a Development.

October 21, 2011 at 7:01 pm (Medical) (, , , , )

Okay, an actual medical related post with no spooky foo, I promise.

After two months of run-around, I finally have my very own wheelchair in my possession. I plan to use it to lengthen the amount of time I can be out and about, as I have found that often it is too much walking that makes me both tired and in a lot of pain at the end of the day. So this addition is a good thing, in my book. And the diagnosis the pain doctor used to legitimize my prescription was myalgia/myositis, the latter of which is new in my book.

Now to the doctor ethics. I posted on some of this on Facebook, so you may already be acquainted with the situation. I had been seeing Dr. Ruth Jacobs, an infectious disease doctor in Rockville, MD for the past few years. The way I got to her was a little strange; I had been seeing another ID doc but when I was hospitalized with an infection he wasn’t available and sent her. I did six months of follow up with her, and in that way you get when you see the same doctor for a long time, got used to seeing her when I needed an ID doc.

Well, I saw her in February and it was her who found the TB. It was her who got me admitted when I was having the bad drug interaction between Rifampin and Fentanyl. It was also her who, after that experience, refused to treat the TB further and suggested I contact the local County Department of Health, which I thought was a little weird. In the middle of all of that, she noticed on my intake form that I had sex with multiple partners, and decided to give me a 30 minute lecture on STIs and how safer sex practices are not so safe. I tried to interject and explain that the sex I engage in is not all that risky, and that I actually knew quite a bit about safer sex practices and STIs – to no avail. I also noticed that when I came to appointments with my patient advocate, who is (sorry, hon) a pretty obvious butch lesbian, the doctor continually asked me where my husband was.

I never really thought about it until I needed to google her to find her office number. See, all week I had been trying to make an app0intment to see her (she wants to see me before re-starting the TB meds) and got really odd responses from her secretary. Once she asked if she could call me back, and never did. Another time she asked if I could call back tomorrow. A third time the phone rang and rang with no answer and no voicemail. So I thought maybe there was another number I needed to call to make an appointment, so off to google I went.

What I found were two YouTube videos.

Of the two I found, this was the least offensive. Obviously, a doctor with issues about the trans community may not be the best fit for me. I never discussed my gender stuff with her, so to her I probably just looked like a butch lesbian who happened to be in a hetero marriage. In this video, she represents a right-wing “Think Of the Children!” sort of activist group that is generally anti-gay, and claims that allowing trans people the right to not be harassed means that young girls will almost definitely see cock in women’s dressing rooms. Um, okay.

It is the next one that is pretty bad. I warn you, this video has been edited to give some of the worst comments up front, and then you get the mostly-unedited version of her testimony after the credits. This is the same doctor testifying to the DC governing body against gay marriage, but mostly she talks about HIV/AIDS, even after it is pointed out to her that one doesn’t have much to do with the other. Her point seems to be that legalizing gay marriage would force sex education classes to teach anal sex as being as normal and safe as vaginal sex, even though anal sex is “dangerous” and many people (especially young black men) get HIV from anal sex. If you’re wondering about lesbians, it’s addressed in the video.

Two things – although she uses medical language, it may not be completely work-safe (She talks about anal sex a lot), and it is really worth watching all the way through if you can, because one of the board members puts her in her place and it leaves you feeling better about the world.

So with all that in mind, I have decided to go to another Infectious Disease doctor. It may have been a GodHammer that kept me from being able to make the appointment until the Great Google told me of her wicked ways, or just dumb luck, but either way it’s probably for the best. I’m going back to the other ID doc, and may have to start some of this silly TB stuff all over again, but in the end I decided it’s worth it to be with a doctor I can be honest about who I am with and not have to worry about it affecting my level of care.

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How Trickster Became a Death Shaman, a parable.

October 19, 2011 at 7:04 pm (Spiritual) (, , , , )

So Trickster came to a new town, a town that was famous for it’s deep, still pond. Trickster didn’t know why they felt drawn to the pond, but there was something about a body of water that rarely moved, had no current, and in general just stagnated that called to them. We do not know if they had to travel a long way, or just down the block, but it’s important to note that this is not where Trickster came from, or started.

They walked along the shore of the pond, and there was a majesty and grace to it; just by looking at it you could tell it went very deep. For a while, Trickster just drank in the mysterious feeling of the pond, but it wasn’t long before all this stillness started driving them a little mad. What good is a thing, says they, that never changes, that never moves, that smells like stench; what good is water that you cannot drink, that you do not want to swim in – it seems it’s only purpose is this feeling you get when you walk along the shores. It is a feeling, a strong feeling in your soul, but that could also just be a reaction to how bad stagnant water smells.

So Trickster looked around the pond, and finding themselves alone, noticed several stones on the ground along the path around the pond. And in their way, they began to gather these stones – some big, some very small – into their pockets. A plan was starting to form, an amusement, something that would definitely mark the presence of One Who Makes Change here at this place.

PLUNK.

They looked around to see if anyone had noticed. Seeing no one, they tried again.

PLUNK.

This time, feeling safer, they were able to see the gentle ripples that the stone made in the pond. The water moved so happily, as if it had longed to be in motion for many years but no one had come to help it move.

KER-SPLASH.

A large stone dove in, and after watching the waves and curls of water for a while, Trickster heard a gentler, almost completely muffled “donk” as the stone hit the bottom of the pond. They smiled, in that way that children smile when they think they’ve figured out some secret like where their parents hid the sweets. They didn’t know what it meant, but they knew they were probably not supposed to know it, either.

With no interference from the outside world, the Trickster began exploring the pond in earnest. Many stones were thrown into it, at various places, and they noticed the results with glee. Something secret was being revealed with each muffled “donk” or absence of “donk”. Soon, the water was moving in several different directions at the same time, and the atmosphere around the pond began to change. Trickster began to change. They were happier, lighter, and found a innocent joy in throwing the stones into the pond and recording their effect.

They were so consumed by this plunk-donk that they did not notice the Stranger approach. The Stranger owned the pond, or maybe the pond owned the Stranger. However, the two were linked, and the chaos stirred something inside of the Stranger. For a while, The Stranger stood quiet and still, watching the Trickster dance around throwing stones into the pond and watching the reactions. The Stranger smiled.

It was this smile that the Trickster felt, and soon Trickster was aware that they were not alone.  Sheepishly, they went back to observing the pond in its more recognizable state, as the last little ripples died down and the deep solemnity drew a hush over it once again. However, Trickster kept stealing looks at the Stranger, and was drawn to that enigmatic smile. It was wide and welcoming, and creepy and unnerving at the same time. It was that dichotomy that drew the Trickster closer and closer, until the two of them were standing next to each other in silence.

“That was fun,” the Stranger remarked. “It’s been a while since someone enjoyed this pond.”

“I don’t know. It seems like this pond has a reputation of being enjoyable, but in that way that sleep is enjoyable. It’s not lively, or energetic, or friendly, but it makes you feel good,” said the Trickster, always looking at the other side of the issue.

“Many people are scared of this pond. It is deep, so deep we do not know the bottom.”

The Trickster swallowed hard, and decided not to share his plunk-donk research with the Stranger. However, by now Trickster had a pretty good idea of the topography of the bottom of the pond, where it grew so deep the donk was almost swallowed by it, and where the stone could still be seen for the shallowness of the water.

The Stranger continued, “Because of this, very few people come here anymore. Even those who live by the shores of the pond, they avoid it or are afraid of it. They try to pretend it does not exist. Even in the summer, when the stank of the rotting plants in the pond hangs heavy in the air, the people just look away and hold their noses higher, or contribute the smell to something else.”

“That seems silly,” said Trickster. “It’s a beautiful pond, and once you get used to the smell it’s a lovely garden as well. And it’s a fairly large thing to try to ignore or wish into non-existance all the time.” Trickster hated when people tried to ignore things that were right in front of them. It was sort of their raison d’etre, to force people to see those things. It was also part of Trickster to help people face their fears, and push past them, so that the fear held no power over the people anymore. This pond seemed to be calling out to Trickster now, a new cause to undertake.

“Oh,” said the Stranger, “Everyone comes here eventually.” Again, with that creepy but welcoming smile that made you feel your own bones. “It’s just that once they come here, they know that it exists, and they don’t like how it makes them feel. Take a look, deep within the water. See how it makes you feel.”

Trickster thought this a strange request, but they were always up for a challenge. Trickster went to the water’s edge and looked at their reflection in the water. Although it was definitely Trickster looking back at them, it was a different sort of Trickster. The eyes seemed hollower, and the flesh a little sunken. The longer they looked, the more the reflection withered away. Instead of being repulsed by this, Trickster was intrigued. Usually, a reflection is stagnant – it shows us what is there. This was more Trickster’s style.

“I think I understand,” said Trickster. “So, uh, yeah.” There was this uncomfortable silence between the two of them. The Stranger continued to smile at Trickster, and Trickster got the feeling they should probably be on their way now.

“I want you to do me a favor,” said the Stranger. “I want you to talk about this pond, at least your experiences here. I want you to talk about the plunk-donks and the changing reflection and how my smile feels in your bones. I want you to share how your life changes now that you’ve been to the pond, and you know that it’s here, and you’ve smelled the rot, and you know that someday you will be back here once again.”

Trickster looked up, and down, and side to side. “What do I get for this ‘favor’? What makes it worth my while?”

The Stranger took a small vial out of their pocket, stooped down and filled it with pond water. “I admit, things will change for you if you do this thing I ask. You will still be Trickster, but they will smell the rot on you and know that you have been here, that you know me. You can still do your Trickster-y type things, but also these things I ask. And when it comes time for you to come back, I will make it an easy and pleasant visit.”

“Why me? I’m sure there are many people in the town who would take that deal in a heartbeat. I already have a Job. I don’t need to add anything else to my plate.”

“Because, my friend, you above all others understand the nature of change. And although this pond seems like it never changes, it represents the biggest change of all. If you can dance with people through life, showing them the best and the worst of how the progression is one change after another, this is just one last change that they should also be dancing about. Now you’ve been here, you understand this place, at least a little, and I think as time goes on it will make more and more sense to you why you are one of many to talk about it, to lead people here, to make them think of this place as a good and worthy place, and not something to be ignored or feared.”

“I guess that makes sense.” Trickster took the vial of pond water and put it in their pocket. “And who shall I say I made this deal with? If people ask me who is Guardian of the Pond, what shall I say?”

“It is their Job to seek me out, if they want. The pond is unavoidable, but the Guardian is not.” And then, as though to seal the deal, The Stranger leaned over and whispered their name into the Trickster’s ear. “So you can find me again,” the Stranger said.

And the Trickster did the same, somehow knowing the significance of the Stranger knowing what their true name was.

 

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Mistress Poppy

October 13, 2011 at 5:14 pm (Chronic Pain, Medical, Spiritual) (, , , , , )

Author’s note: Although I have not yet read Kenaz Filan’s book, The Power of the Poppy (available here ), I have had conversations with hir about the subject. I have also read, and suggest that you read hir interview with Galina Krasskova on the subject here . Finally, Kenaz is, in general, a prolific writer on many subjects related to neopaganism, shamanism, and the Path of Sacred Plants, and hir blog can be found here: http://kenazfilan.blogspot.com/

This entry is inspired by hir work with Poppy as a plant ally, hir open and direct discussions about harm reduction and addiction, and hir feeling that these are things that should be more openly discussed in the neopagan and shamanism communities. So Kenaz, thank you for blazing the path for this entry.

It is no secret that I am in pain management therapy, and see a specialist for various legal, prescribed opiates for the management of my chronic pain issues. Currently, I take both oxycontin and oxycodone; in the recent past, I had to be weaned off of Fentanyl transdermal patches due to a severe interaction with a course of drugs I will soon begin. I have also received Vicodin ES from this doctor as well.

The spirit of Poppy has me strongly tied to Her, and She is my Mistress. Not in the dirty, cheating on my spouse sort of way, but in the power dynamic of submissive/Mistress. Some days, we have a happy relationship – I admit, without these drugs my life would be a lot more difficult. However, my pain doc has noticed that I am extremely reactive to these drugs, insofar as I exhibit signs of addiction easier than most. When I was on the Fentanyl (on 100 mcg patches, which is as high as they go), my body would begin going through early withdrawal if I was simply an hour or two late in changing the patch. According to the doctor, some patients could have the patch fall off completely and they only way they would know is that their pain would slowly increase.

Not so with me. I would begin rocking back and forth uncontrollably, have a strong need to shake my legs and arms, lose control of my emotions, and in extreme cases, become violent against myself in hopes of quelling the terrible feelings I had. Even now that I am “clean” of the Fentanyl, I can tell when I am as little as half an hour late taking the oxys; I start out feeling grumpy and in more pain, but within an hour I am lost in those early feelings of withdrawal again.

In addition, I have to take these drugs at very specific hours of the day, and there is very little flexibility in that. I wake up in the morning not because I am finished sleeping, but because my body knows that my opiates have run their course. However, sometimes I wake up two or three hours before my morning dose is due, and if I take it early, it will throw off this delicate balance – I will start jonesing for my afternoon meds early, and then my evening ones; which leads to me waking up even earlier the next day.

I hate this.

When I was on the transdermals, I got the opiates through my skin, rather than from oral doses, and they lasted 36 hours. So the rest of my drugs could be taken pretty much whenever it was convenient for my schedule. Now that they are gone, and I am on oral meds alone, it doesn’t matter what I am doing around 3pm – I need to stop and take my drugs or bad things happen.

Maybe this doesn’t sound like such a big deal to you. There are lots of people who, for a host of other reasons, have medicines that have to be taken at specific hours. I know my friends on oral birth control have plenty of experience with taking their pill at the exact same time every day (otherwise, the pills are less effective). But I don’t think it feels the same. If you miss your birth control, there are life consequences; if I miss my opiates, there are immediate body consequences. I become an irrational individual. My body starts doing things I don’t want it to do, and I can’t control it. I feel terrible all over. My pain eventually spikes and my ability to cope with anything reduces to me staring at a television set until not only I take my drugs, but they actual activate and soothe the withdrawal.

This is now an almost daily occurance. I am working with my pain doc to find ways to make it more bearable, but short of giving up on opiates completely, this is the price I pay to dance with Poppy.

I should be clear – the drugs work, most of the time. I can definitely feel pain relief when I take them as directed. They give me the ability to achieve more life than if I didn’t have them. I have tried non-opiate pain relief, like NSAIDs and herbal supplements, massage and acupuncture, TENS units and meditation. Although some of these things I use to supplement my opiates, none of them work well enough alone to make me functional. I was once admitted to the hospital and part of the problem was that I was taking a large amount of an over-the-counter NSAID in hopes it would help with my pain. (That, in part, is what got me admitted to the pain management program I am in now.)

So my Mistress isn’t always a punishing, mean, abusive Lady. She gives me ease, helps me sleep, allows me to have wonderful life experiences I wouldn’t otherwise have. But Her rules are strict, and I have to give Her homage on a regular basis. For the most part, She doesn’t let me dance with any other potentially addictive substances – I can’t have alcohol socially they way I used to (I still imbibe for religious reasons, but in small amounts). I can’t use illegal substances because the program tests me for them and if I test positive I am dismissed with nothing but a month’s worth of drugs – no help with withdrawal. Caffeine exacerbates the effects of withdrawal, so I have cut most of that out just to be on the safe side. She is a jealous, possessive Mistress who wants me all to herself.

Since I am an animist, I feel like She can even tell when I start talking about letting Her go. I spoke to my pain doc yesterday about my abrupt morning withdrawal sessions and said that maybe I needed to get off opiates altogether. He didn’t disagree with me, but first we are trying some ways of playing with how I am dosing with the various drugs, to see if I can sleep a little later and wake up without being in withdrawal. However, that evening, my pain shot through the roof and I was practically begging to take my drugs early to ease my suffering. She wanted me to know that I need Her, that life without Her would be hard and limited. Even today I am still feeling pretty awful, and that’s with the drugs.

Getting off of the Fentanyl was a terrible ordeal. The withdrawal was severe, even though I was stepped down slowly from 100 to 75 to 50 to 37.5 to 25 to 12 to 0 over three months. I was given Catapress, frequently given to heroin and alcohol addicts who are trying to get clean, for support. I started getting twice-weekly acupuncture treatments that are used for heroin detox. Even then, for a good portion of that time I couldn’t leave the house, I felt absolutely horrible, had out-of-control sessions of shaking and kicking, and couldn’t really do much more than lay in bed and pray for it to end. Even after I reached zero it took me three weeks to feel like I had really kicked it.

Even having gone through all of that, there are times that I miss it and wish I could go back on it. A lot of the Del you have seen over the past three years would not have been possible without Fentanyl. The drugs I am on now are not as strong, not as useful, and a lot more demanding. Sure, it really sucked when my patches unstuck themselves while I was at an event and I started going through withdrawal until I could put a new one on; or not being able to use hot tubs because the medicine was released via body temperature and if mine got raised too much artificially it would release more drug, which would have been dangerous. I frequently got sunburns around my patches because sunblock ate at the adhesive holding it to me. And I fielded the question “Is that a new tattoo or cutting” more than a thousand times when I wore clothing that exposed my patch, and when I told them what it was (not as cool!) the conversation almost always got awkward.

Right now, I have to stay away from it because I have to start the TB regimen, and they don’t play together. (We tried it in June and it sent me to the hospital.) As it is, the TB meds will also make the oxys that I am on work less efficiently, so who knows what will happen then? I don’t want to increase my dosage, which could lead to a stronger addiction reaction, but I don’t want to suffer in pain, either. But I can’t say that when it’s over, I will face a tough decision about whether going back to Fentanyl is the right choice for me. It’s one of those “rest of your life” drugs at this point – if I do it, I am doing it with the intention of never going off of it again.

But I don’t know. I wish I felt like I had real, equitable options. I mean, I always have the choice of going off the opiates and just learning to live with the pain, or to rely only on other, less addictive meds like toradol or ultram. It would be wonderful if the doctors would figure out what was causing my pain and treat that, but at this point that feels like a pipe dream. And I figure even if they figure out what’s wrong with me, it doesn’t mean that the pain will go away; it just means they’ll be able to explain it.

So for now, I dance the terrible tango with Poppy. She runs through my veins and brings me a false sense of peace. She is a horrific nursemaid, but She’s the only one I’ve got.

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Milestones

October 11, 2011 at 9:30 am (Death and Dying, Living, Spiritual, Uncategorized) (, , , , , , , , , )

Today I am the oldest I have ever been.

-Seen on a T-shirt

Today is my 37th birthday. It’s one of those years that no one celebrates. For those of you who are younger, there comes a time where you stop really celebrating your birthday every year, and only wait for the ones that have some artificial meaning, like a new decade. The only association I have with the number 37 is this:

Dante: how many, how many dicks have you sucked?
Veronica: something like …36?
Dante: 36, is that including me?
Veronica: ummm …37?
Dante: 37!! (Turns to Customer) my girlfriend sucked 37 dicks.
Customer: In a row?

-Clerks

Not really something I want to think about. (Not that anyone I know has celebrated a birthday year by trying to suck that many cocks. I have no friends like that at all.)

I’m not doing anything super spectacular for this birthday. I have a few friends coming over for dinner, and then later on this week I have a date night with Ninja planned. I already got my present from Ninja at Disney, so I don’t really have anything like that to look forward to either.

I just feel like I’m older than I’ve ever been. And yes, I know 37 is not very old in our era, but just like I felt like turning 30 was the end of my life as I knew it (and in some ways, it really was) the fact that I’m a year older now just makes me feel closer to death. Instead of thinking about the year ahead, like I did when I was younger (“Now I’m 9! Think of all the wonderful things 9 year olds get to do!”) I think about the year behind. 36 was hard.

I should feel triumphant. My life has been pretty rough – I survived a pretty challenging childhood, a terribly bad young adulthood, a complete nervous breakdown, a marriage that turned out to be a mistake, a commitment I thought was going to last the rest of my life and then didn’t, a complete destruction of my personality and sense of self and rebuilding process that took place hundreds of miles from anywhere familiar, the death of one of my parents, and now this mystery chronic illness that is slowly eating away at my ability to enjoy life. In the last year, I ended a relationship that meant a great deal to me, I have had even more intrusive symptoms that make life harder, and spent more time at home in bed than I ever have before.

On the up side, I am still here. Even as recently as this weekend, I was able to give someone a Message from the Gods that they desperately needed. I received one of the most touching love letters I have ever had yesterday from my girlfriend Ruth. I have this wonderfully strong marriage that bends and changes as we bend and change, that gives me hope and support and makes me want to wake up every morning. I get little notes from my friends reminding me that I am important to them. I know that I still make a meaningful impact on the world, in my own strange way. So it’s a good thing I have lived another year.

Instead of celebrating, I almost feel like I should memorialize the year behind. Let it go, dissolve into the ether; let it’s lessons mark me and make me stronger and let the hurts and disappointments give me resolve to look for more happiness in life. Along those lines, I reached out to someone I’ve been crushing on and made a move. Let that be my birthday present to myself. I still have hope.

In these last years I have left, I feel like I should be looking at each one like a vintage. Condense the feelings and emotions, the memories and the sensations down into something spiritually tangible. That way, when I look back at 36, I can soak in what I want to remember from it in a mouthful of complex tastes and smells, but have it be a singular experience. 36 would taste like bitter red wine, but the rim of the glass would be coated in opiates that made you feel withdrawal the next day. It would smell oaky and dark, be chewy like wine is chewy, but with a small whiff of cinnamon and tabasco. The aftertaste would be slightly acidic and the sulfates would roll along the sides of your mouth. If you drank too much of it, it would give you a really shitty hangover the next day; but just enough would give you moments of dark ecstasy, like indulging in a fetish you haven’t really come to terms with. It would definitely cling to the sides of the glass like blood, and is best served in big glass goblets that would make even the manly hands of a drag queen look dainty.

I don’t know what my hopes are for 37. I can only say that I have some. Even as I do the Work I need to do to prepare to die, I’ll take today off and think about what I need to do to prepare to live. It’s the much harder of the two, but it’s also the most fun.

Hail Loki, who gives me the fire of life through my veins, who gives me my purpose and keeps me pointed towards the Ultimate Goals;

Hail Odin, who reminds me that the journey is a gift of joy, if you put your back into it and do the Work;

Hail Erzulie Dantor, who gives me love and affection when I am lonliest;

Hail Erzulie Freda, because I should;

Hail Ogun, for challenging me to be a man;

Hail the Lady, for Her healing presence and Her inspiration;

Hail Baphomet, who in His own way reminds me that my Decay is a spiritual process worthy of reflection, but that in the end, all efforts to save our lives will fail. Even when others wish to lend their strength, it is I who must walk towards the Other Side alone.

Hail all the spirits that guide and support me, and may they give me another year of life towards my Purpose.

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The First Gate

October 7, 2011 at 8:33 pm (Spiritual)

Living means hugs from Pooh

Del and Pooh at the Magic Kingdom

You wouldn’t ordinarily think of Disneyland as somewhere to have a great life revelation, but that’s exactly what happened to me.

We had planned the trip what seems like a lifetime ago, under very different circumstances. But because going to Disney World was on my bucket list, we adapted and stuck to the plan to go, even though I wasn’t in the best of health. It was trying at times, because I can only stand being in the parks about five hours at a maximum, which served as a reminder at how much stamina I have lost. I worried a lot that it was a waste of money since our experience was limited by my ability, but looking back I wouldn’t have changed anything. I had a lot of quality time with my spouse, which was very needed. I had time where I didn’t have to worry about anything but having a good time and enjoying what I could. We were able to be real shot-callers, so we changed plans to meet our needs.

Spiritually, I face a puzzle. I don’t know much about it, other than the beginning is a series of questions I must find soul-deep truthful answers to. The first question, or “gate”, is “Do I want to live?”

At first, my interpretation of the question was pretty straightforward: am I committed to taking another breath, or am I ready to call it quits now and make a graceful exit? I don’t feel suicidal, per se, but needed the freedom to think about whether or not facing years of declining health and limited ability was worth whatever I thought I was going to get out of keeping on keeping on.

At Disney, I realized the question has more depth than that. It’s not just a matter of “Do I want this body to continue it’s autonomic processes of breathing, heart beating, etc?” Although that’s the medical definition of “life”, that’s not what my spiritual question is really about. I have been Told that suicide is not an option (yet), and really, I don’t feel ready to go now. No, the question of living or dying is not about the physical body at all.

Because of the way the trip was planned, I got up every day and got dressed, ate breakfast and went out. Some days I felt pretty good, and other days I felt like utter crap. But this was our vacation, our special time, and it was limited, so if I decided to stay in bed one day it meant I would miss out on one of the parks altogether, and Ninja would miss it too. We would miss the experience of the park, the meals we had planned, the time spent together doing things, and instead stay in the hotel room. Some days I went out for a long time, and some days it took all of my power to stay active for four hours. But every day, I chose to get up and do something to enrich my life.

I spend a lot of my time at home dying. By that, I mean that I surrender to my illness and let it decide that today, I am trading whatever it is I could be doing for “being sick”. Now don’t get me wrong – there are days where this is a pretty unavoidable choice. I am absolutely not saying that I believe I can “think myself well”, or if I just have a maj0r attitude adjustment then I will miraculously feel able to jump up and achieve everything I want to. But I admit that there are times where I could push harder, where I could have made the choice to be uncomfortable or in pain, or chance feeling poorly, and instead I chose the “lazy” route of staying home. Sometimes people around me enforce that, too – we’re trained to tell sick people to stay in bed, in that some day they will be “better” and then it won’t be an issue anymore.

For me, there is no “better” coming.

So what I learned about this question, “Do I want to live?” is not so much about the actual medical definition of living. The question is really asking me if I have the inner fortitude to seek out and challenge myself to have experiences that enrich and magnify my quality of life, even if I don’t feel physically great at the time. And sure, maybe sometimes I will choose to go out and do things and it will turn out to be the wrong choice – that I should have stayed at home, or whatever I’ve chosen to do is more demanding than I can handle. But it’s better for me to find this out by actually trying, rather than just making an assumption or listening to some non-medical professional tell me what’s good for me.

Now I need to figure out what this living is going to look like. I know writing this blog is a baby step. I know that getting more involved in ritual activities in my area is a big step. I know going out with my friends and loved ones is of great importance to me. I need to keep up with my correspondance (a big living-dying issue in my world) and keep in touch with people who don’t live close to me. I need to go to kink and sex events, preferably teach at them, because it’s something I love to do. And once I’m done with the TB meds, I am going to see an endocrinologist to talk about going on testosterone, for a bunch of reasons – but mostly because I feel like its an experience I need to have before I die.

I don’t know if I’m done with this first gate now, but at least I think I have a handle on what I am supposed to be learning. I know the second gate is “What do want to do with the life that you have?” and that’s a whole different issue. Right now, I just need to concentrate on living, and what feels like “life” to me, and then I can worry about directing that energy towards a greater purpose another day.

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