What about it?

February 18, 2013 at 4:03 pm (Chronic Pain, Disability, Living With Chronic Illness) (, , , , , , , , , , , , , , , )

“What about Dying for a Diagnosis?” Winter asks, in that way good friends, or sometimes shamans, ask someone about something they’ve been overlooking for longer than they should have.

“I know, I know…I just don’t know what to say. ‘Things are going the way you’d expect’ doesn’t make for an interesting blog post,” I reply.

I’ve made several fairly popular and viral posts over at Sex, Gods, and Rock Stars lately, and have three or four posts sitting in my word processing program, unfinished. (I tend to jot down ideas as they come to me and then develop them in small segments until I reach a stride in my writing and finish a post. Sometimes, either possessed with a strong opinion or a timely matter, I will conceive and write an entire essay on the same day, but most of the time I work in starts and stops as spoons allow.) But none of them are for here; and there are more reasons than merely not having anything earth-shattering to say about my current roost in my medical journey.

And it’s not untrue: things have slowed down incredibly since the surgery. I assume weekly posts that entail mostly of “I’m still healing, still dealing with post-op pain, and the doctor visits have been pretty routine.” Other than one of the surgical drains developing a crack and having to be removed at home (by me, not knowing that there was a significant amount of tubing inside my body – I just knew that the drain was no longer holding suction (which is how it works) and the stitch had blown, so it was going to fall out eventually anyway) and a bit of swelling around the center of my scar that I plan on having checked out by the surgeon’s office sometime in the next week or two, there hasn’t been a lot of dramatic action in our hero’s story.

It’s also not entirely true, either. My chronic pain has shot through the roof, with more days finding me in bed doing the bare minimum I need to get through the day than days where I spontaneously decide to do something like catch a movie or go out on an errand. I was also doing something I call “spoon banking”, where when I have a commitment coming up that will require much more energy than normal, I will spend the week(s) leading up to it getting extra rest and being judicious about what I really need to do, in the theory that if I don’t use the energy now on less important things, I will have (a little?) extra when the time comes. I attended my first teaching gig/event in six months this past weekend, and I think that the practice paid off, as it really wasn’t until Sunday evening when I started “feeling it”.

It was good to get out like that. Not just because it was an important personal step in healing from the separation, but because too much introversion makes Dels depressed, and depression comes with its own tangible consequences in levels of pain, sleep disturbances, and mental health symptoms that only muddy the waters in terms of figuring out what the heck is wrong with me. It wasn’t easy, as it was one of those events where I felt like I was running from one thing to another, rather than leisurely enjoying my first large-scale test of my constitution by giving myself liberal amounts of rest between commitments. It’s a side-effect of being one of the programming director’s right hand men as well as his roommate; should something come up where he needed someone with skills I possessed to fill in, it’s hard not to turn to your lovers and say, “Um, hun, is there any way you could…” Of course, this is not how Winter tends to ask me to do stuff: it’s more like, “Dammit! I still can’t find someone to invoke Water or Fire at opening ritual! And it’s in two hours! What am I going to do?” And like most decent people, if there’s anything I can do to ease his stress and make him feel good, I’ll do it. So my “workload” at the event shimmied up from teaching two classes, to three, to also helping produce a ritual, to being in a second ritual, to judging a contest, to helping him find other people to fill in where I couldn’t, and so on.

But this entry is not about that. It’s about my avoiding this blog, and knowing damn well that Baphy only let me start Sex, Gods, and Rock Stars if I promised not to forget that this was my first and most important commitment. It doesn’t help that I was offered a book deal last week, a collection of some of my more spiritual blog entries, and when I submitted links from both SGRS and Dying for a Diagnosis, most of the DfaD essays were relegated to the category of “Cool Things Del Has Written”, which was to say “Not Really Meant for This Book”. Now, I’ll say that the publisher has offered me a few options, including providing formatting services should I want to put out a collection of blog entries that fit this category (but not carrying it under their watermark), and I find myself once again feeling like I may be neglecting this blog, not just in the writing sense, but also in the sense of it being considered part of my voice on the Internet (and beyond, when/if the book(s) come to manifest.

It’s also true that when I was praying about whether or not I should (or could) start the second blog, I bargained that whereas reading about my frustrations with the health care machine and/or my funeral arrangements and/or the spiritual revelations being chronically ill has given me weren’t exactly going to get me international stardom (or many blog subscribers – I had always assumed that the majority of DfaD’s readership was made up of people who already knew me, plus a smattering of other spiritual folk suffering from chronic conditions who found solace in what I had to say on the subject), SGRS was much more in my personal wheelhouse. I already have a reputation and/or following from my vocation as a kink and spirituality educator, as well as a shaman and spirit worker, and the bargain included the idea that once people found SGRS, they might wander over here to see what else I was writing. And sometimes that’s true; but I definitely have twice as many subscribers on SGRS than here. When a new post goes live here, I get something like 150 people clicking links on social media to see what’s up; on SGRS, it’s almost double that.

It’s not surprising; there are many more people interested in, well, sex, Gods, and rock stars than they are about death and dying. This blog is much more personal, and so it may not be of interest to those who don’t know me personally. But it doesn’t help when I use my essay-writing spoons on developing things for SGRS and only waiting until something major (good or bad) happens in my life to blurt out something on DfaD. I could very well be doing more research, thinking, and praying about the spirituality of illness, pain, death, and dying; which would, in turn, inspire me to write more essays here that aren’t so reliant on knowing the particulars of my medical situation or my history with terrible surgeons/lazy doctors/pain management techniques/etc. In fact, I felt bad when I saw that a small handful of people, upon seeing that I had a new blog with much snazzier and less agonizing essays on it, unsubscribed from reading this one in favor of the other. I’ve also seen a decline in how many people bother to click on a social media link to read what’s here, whereas more of them are inspired to give me a few moments of their Internet browsing time when I’m writing about spirit work or devotional practices.

It doesn’t erase the fact that I still don’t have a diagnosis, after almost eight years of suffering. That one of my primary spiritual identities is that of the Dying Man, the person who speaks for those who are much more aware of the limited time we have on this planet, and the messages we desperately wish those who patently ignore this impending deadline (ha! pun!) would pay attention to. I’ve had “The Five Top Regrets of the Dying” essay a friend emailed to me sitting in my bookmarks for probably a month now, meaning to write something about it for DfaD, but instead I’ve been spoonbanking to go to a spiritual kink event and enjoying the blush of a book deal.

What it does, is it lets me feel like there’s more to me than this. It’s something I’ve written and spoken about quite a lot; this fear that what I leave behind will only be linked to the fact that I’m chronically ill, when in fact I’m a much more multifaceted and vivacious person who just so happens to also be chronically ill. It lets me taste this feeling of being a rock star, even while I’m being pushed around in a wheelchair and sleeping rather than partying late into the night/early into the morning. It comforts me, and those around me, to know that all the information and experiences in my head will be passed on to the next generation, so they won’t find themselves having to rebuild a modern form of shamanism/ordeal mastery/spirit work/ritual creation/etc from the shreds of those who were too sick to take a moment and write it all down. One of my mentors and friends, Raven Kaldera, churns out book after book, not taking any time to promote one or the other for very long, because he too feels this need of getting all the information/experiences out there before his chronic illness takes him (or, since we both believe in the concept of being able to communicate after death, at least makes it harder for us to get the point across).

So here’s the skinny on what’s going on with me medically: I have noticed that I am losing weight at a scary rate again; not only the 40lb weight loss I had on Dec 28th, but more than that. And yes, I’ve gotten my handful of “you look great” compliments, and it’s hard to sift which ones mean “You look really good for someone who had major surgery a month ago” from those that are really saying “You look thinner, and thinner for you always means healthier, right?” I’m still wearing supportive garments over the surgical area, although now I do it more when I’m going to be super active or if my abdomen hurts, rather than every day. There’s a growing swelling around the center of my abdomen that is causing the scar to heal inverted (dipping inward rather than keloiding), and I’m going to see Dr. Sacks about that sometime very soon.

My chronic pain has been a devil to me, and my muscles have been locking up, misbehaving, or cramping painfully much more often than they did prior to surgery. My pain doctor was…I was going to say “less than thrilled”, but it was much more like “really pissed off”…at the drug combination I was given by Johns Hopkins (although I did mention that JH tried to contact his office many, many times, both to get his consult on what to give me, as well as to secure that it was okay to release me on that combo, to no avail). And it’s not helping as much as you’d think. I mean, it is helping with the surgical pain for the most part, but my chronic pain eclipses it. I’m very worried, because there are three tiers of pain management – think of it this way: there is “have some occasional Vicodin for when things get really bad, but mostly rely on NSAIDs to get through it”, there is “okay, here is some OxyContin, and have this other narcotic when things get really bad” (which is where I’m currently at), and then there’s “We need to start talking about permanent pain management options, like implants or lifelong narcotic plans”.  Basically, I’m at the place where if I get anything stronger to help with my pain, it will be considered going from tier 2 to tier 3, and there’s nothing above that. So if I accept going to tier 3 now, if things get worse as I age, or if I grow a tolerance to the tier 3 treatments, there’s nowhere else to turn but learning to accept a very painful reality. So there’s really nothing he can do to help manage it, except offer up lifestyle changes.

I am looking into getting a mobility scooter (y’know, rather than a Vespa) in hopes that by the summertime, where I do a lot of events at a local campground, I will be able to get around independently rather having to rely on golf carts to get around. (Renting a golf cart just for my own purposes is rather expensive, even just for a weekend, and hoping that one that is being used as the camp-wide “taxi” will get me around in a timely manner has been..less than optimal, as a teacher/presenter/busy person. There are also places a golf cart isn’t allowed to go, that I’m hoping I may be able to access on a personal scooter.) It will also mean that I won’t need someone to push me around unless wherever I’m going makes bringing a scooter with me impractical or impossible. This weekend really drove home how dependent I am when I’m using a manual wheelchair I can’t self-propel; twice I was trapped in my hotel room because the person I relied on to get me around was unable to do so. It wasn’t their fault – in one case, poor Rave had been running herself ragged and really just needed a nap, which was completely reasonable – but it is a somewhat terrifying feeling when you really want to go somewhere but you can’t do it because no one can help you. Having a scooter would make both the camping events easier, as well as the hotel ones, as the model I’m looking at is built to handle both. I just need to hope my insurance will cover it – which it probably will – and I can get it settled in time.

I’m also thinking about alternative forms of pain management, but it’s hard. I really feel that acupuncture didn’t help, and the therapist I was seeing is someone in whom I have full faith in their abilities. I’ve been told that sometimes you need to shop around to different “schools” of acupuncture (there are several different techniques), and maybe a different one would be more useful. I’d give my left arm to find a massage therapist, but as I’ve said earlier, current none will treat me because of the infection issues. (Which I still find incredible on a long-view basis – since all the ones I spoke to, I told I would just have to rely on amateurs who were willing to rub my muscles, and who wanted to learn better techniques so they could help, and they were fine with that, but they weren’t willing to work with me professionally – but I totally get it from a smaller-view, as it was a ‘cover your ass’ move on their part.) I’ve been working on learning some basic stretching exercises, and moving around a little bit each day with intent, in hopes that maybe something like chair-yoga or chi-gong might be useful in loosing up my spastic muscles. It’s just difficult because I’ve tried so many of these ideas before, in a variety of ways, and they’ve never done more than given me a few hours relief, if that.

Okay, I’m out of blogging spoons now. I’m half-slumped over and my hips hurt from sitting upright. But there, Winter and Baphy, I’ve written a Dying for a Diagnosis post. Now let’s just see if I can keep finding interesting things to say.

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3 Comments

  1. Larch said,

    Quite an update!

    As a pro massage therapist, I can tell you that a great deal of our schooling and professional life is spent covering our asses. It is an unfortunate truth that the wider medical community distrusts and fears massage therapy greatly. Many doctors believe that touch with intention cannot have any therapeutic benefit. They are woefully ignorant of the history of their own profession – before the advent of surgery and the intense demand for surgeons during the first world war, massage therapy was part of the required curriculum in most if not all medical schools. Many people equate massage therapy with prostitution and view any act of touching an unclothed body in a caring manner as being sexual, and therefore, filthy and morally questionable. If nothing else, this profession has given me an immense sympathy for actual sex workers and how poorly and unfairly treated they are by society in general, and the medical system in particular.
    Additionally, there is great hostility towards massage in much of the physical therapy field, for the unfortunate reason that payment policies in the health insurance industry have put the two professions in brutal competition with each other when they should be cooperating.

    Basically, what this comes down to is that even the most conservative and careful LMT can expect to field calls and visits from local clergy, doctors, PTs, police departments and various self-appointed moral crusaders threatening to put them out of business. I’m sure you’ve had your fair share of this, too, as an educator.

    Working with a patient with an active infection and a compromised immune system is always risky and difficult. Many LMTs probably lack the confidence to take your case, and are afraid of doing harm. Those who have the specialized training and skillset to help you might be afraid for other reasons.
    Basically, even if a safe evidence-based treatment plan can be established for you, it puts your therapist at risk of losing his or her license and livelihood. Say you let slip to a friend or a health care worker that you had a massage. All it would take is a single phone call from a concerned MD to open an investigation against your therapist. Unfortunately, the testimony of an honest LMT is still outweighed by the testimony of an angry, uninformed doctor.

    So yeah.There is a lot of ass-covering. Sadly, many LMTs would be afraid to take your case. But not ALL.

    If you are still interested in finding a therapist, your best bet might be to contact local massage schools, and ask for a faculty reference. Explain your situation, and see if there is someone who would see it as a professional challenge! There are a few committed industry veterans that would welcome the opportunity to work on a high-risk case. Also, LMTs that practice and teach lymphatic drainage massage often work on cancer survivors, post-surgical patients, and amputees, and tend to be more comfortable in hospital and homecare settings. Similarly, LMTs that specialize in pregnancy of all things are often more used to working with high-risk patients. You may have luck with either of those specialties.

    Sorry for the rant, and best of luck to you.

    • Del said,

      I appreciate the insight.

      Part of my frustration with trying to find a massage therapist is that my doctors – almost all of them, but especially pain management – has been ON MY ASS about finding one and working with them. Since they don’t know what causes my dystonia, spacicity, and other muscular pain, the best advice they have is that massage will at least release some of the tension (as well as some of the very deep knots I get as part of what my muscles do) and provide some relief. They don’t see it as as solution, but a complementary therapy that might help me lessen my need for opiate relief. So far, honestly, I don’t think the opiates help with the muscle pain at all, or very little; part of that could be my own tolerance, having been in pain management for almost five years now.

      It just frustrates me that I’m obviously suffering from muscle tension and pain, and that seems to me to be a massage therapist’s wheelhouse, and yet I’ve contacted six or seven different massage therapists, and at the most I can get the ones who are friends of mine to either give me gentle work (which really doesn’t help much) or advice for my girl on how to make her amateur massages a little more effective (or last a little longer, as she frequently can only go for five or ten minutes before her hands hurt too much). I’d totally be willing to sign agreements not to sue, and even not to tell my doctors about it, if it meant I’d be in less pain. (I know such things would not be legally defensible, but I’m trying to illustrate how desperate I am.)

      I haven’t thought of contacting schools, so maybe I’ll try that. I just feel so gorram frustrated that I have to do so much legwork to find someone in an industry that frequently complains about client acquisition, especially loyal clients, when I’m ready and willing. I do this enough for doctors and surgeons; I’d really like not to have to do it for alternative health practitioners, too. Us chronically ill folks only have so many spoons to be chasing people down who supposedly decided to go into vocations that, at their heart, are about making people feel better.

  2. EVCelt said,

    Thanks for the update, and I understand about the spoon banking.

    FWIW, I’m still following you here, and Monster Alice is actually *only* following this blog…

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