Hanging In There

August 21, 2014 at 1:42 pm (Disability, Living, Living With Chronic Illness, Mental Health, Spiritual) (, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , )

If you’ve ever had any kind of conversation with me, regardless of the medium, there is an incredibly high probability that when you’ve asked some version of “How are you doing?” I have responded with my fallback, favorite, non-pessimistic, doesn’t-drag-you-into-a-conversation-you-didn’t-want-to-have response:

“I’m hanging in there.”

Those who get to know me more intimately hear that phrase so often it begins to lack meaning. Or they’ll see a twinge, a wink, a deep exhalation; something to cue the listener to the “where” I might be “hanging in”.

I learned at a party four years ago that “How are you, really?”, can easily be mistaken for “I know you had a medical ‘thing’ recently; please tell me how miraculous your healing has been so I can feel good about the world.” I know some people actually mean “I read your blog and I have a general sense of the technical side of what’s not working for you; we’d just like some secret stuff not shared on the blog and I know some pretty awesome doctors who treat Ginger Cancer*.” But once the gathering gets past the awkward social niceties, no one is sure what the next step should be. (If you’re roleplaying 1950, I believe it is to take his hat and coat and usher him into the downstairs sitting/crochet/wielding/welding/spelling correction room while asking him about coffee preferences.)

Sometimes people really do want to know how I’m feeling, generally or right in the moment. Maybe they read this blog and want to hear some of the wacky stories straight from my mouth, or they want to ask questions about things I’ve written.

And sometimes people are super grateful when I answer with something so non-committal, so they can skip past the whole ‘Del’s life is hard’ part and get straight to the “Do you want to go catch frogs with me?” mode. Or just about any other question or conversation or activity.

People are correct that when I go to a party or fun gatherings or even just have you over for hangouts, that I am both of the following at the same time:

  • Totally willing to answer any questions or share any details about my medical journey. Remember, that’s what Baphomet said in the beginning of all this, was to share my experiences as far and wide as I can.
  • Sick and fucking tired of every conversation I have with any human being on the planet is somehow related to me being sick, disabled, or in pain. I want to pretend for an hour or three that I’m just an average ordinary Joe doing ordinary Joe things like going to the movies or setting my friends on fire. Y’know, stuff that just happens every day.

I have been getting MUCH better at setting and supporting boundaries around these things, including being totally willing to withdraw into my bedroom if we are hanging out and I’m starting to feel weak, tired, in pain, etc. I warn people before they visit that it will happen, and sometimes it happens for the majority of a visit, and sometimes it was just during the most critical moments of why they came to see me. But there’s nothing I can do about that, so I accept it and move on.

Too Intimidating?

Another social thing I’ve been trying to figure out lately is that many people think of me as being intimidating. I think the first time someone brought this to my attention was a wonderfully powerful and bodily petite Priestess. We had been to a lot of the same events and such, and when necessary we’ve have fun and interesting but politely distant social contact. I couldn’t really tell if she liked me as a person, or if she was being respectful of my experience while secretly disagreeing with any one of my many unusual beliefs or practices, or if she just thought I smelled funny.

Anyway, said Priestess comes striding into my cabin during a camping event, and sits on the edge of my bed. “Del,” I paraphrased, “I am done being intimidated by you.

This is the sort of thing I hear a lot. People saying that they read something I wrote or went to one of my classes or saw me at a party but couldn’t approach because I am intimidating. It baffles me, as I try to be open and warm and friendly, even though I am introverted down to the remnants of my toenails. But it’s a perception, and all I can do to change perception to be reliably un-intimidating (whatever that looks like).

I mean, it’s nothing like what you’re going through…

People are sometimes afraid to talk to me, especially about wellness-related issues, because they’re afraid that being worried/upset/tired/challenged with their health situation when compared to whatever they perceive I’m going through.

What you don’t see is how that reflects on me. Here are some of the things I hear between the lines when people say things like this:

  • You’re so much sicker/weaker/poorer off than I, so much so it’s only okay to talk about your struggles all the time.
  • You’re never going to take my struggles seriously because yours are so much bigger and more threatening than mine,
  • You are so, so ill that even a simple conversation causes you pain, so instead I will only engage in flighty small talk with you.

I’m sure you get my drift.

Now, this is not an invitation to grill me further the next time I tell you I’m “hanging in there”. Sometimes I really do need a little pushing to open up about things, partially because I find myself telling the same stories over and over again (Baphomet sorta promised me this blog would stop that from happening), and partially because I don’t want to waste the 20 minutes of face time I’m going to get with you at the party/gathering/concert/event to be all about my blood sugar numbers and my O2 sats.
I also have a hard time telling who really wants to hear every single detail about what tests I’ve had and what they’ve shown and who all the “charming players” there are (I not-so-secretly nickname most of my doctors and nurses, especially if there are ones that stand out screaming for one. This trip to JH has given us several – Nurses Anxious, Snake, and Afro; Doctors Bopper, Blondie, and Randomly In Charge; even techs like Pocket Fairy and New Best Friend. In fact, I’ve been asked to come up with a new cast of characters and why they got the nicknames they did, so I’m going to end this post a little prematurely so I can take a break and then tackle that. The next post will also likely have much bigger updates as to what’s going on and why I’m not discharged yet…

….and I just may have found my Zebra hunters. Oh yes, another nickname. The “Zebra” thing comes from an old medical school saying – “When you hear hoofbeats, think horses, not zebras.”


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This is not all of me.

July 4, 2012 at 12:09 am (Living With Chronic Illness, Medical) (, , , , , , )

I haven’t made an official announcement on here, although many of those who read this blog already know – I have started a second blog, called Sex, Gods, and Rock Stars. As I have discussed on here before, in Pushing the Limits, I wanted a place where I could write about all the other aspects of my life – spirit work, sacred sex/kink, being an educator/presenter, ordeal, etc. Dying for a Diagnosis was always meant to be a very specific, topical blog: a place for me to talk about my medical condition as well as the spiritual aspects of chronic illness, dying, and death.

I hope it’s clear (but I know it’s not) that this – this blog and what it discusses – is far from everything to know about me. I was engaged in an online discussion today about how, because what they know of me mostly comes from here, they assumed that I am consumed by my illness. That somehow I am unable to live up to simple obligations, like having a conversation at an event, because I have limited spoons. I also have had events start to try to artificially limit my involvement because the organizers read this blog and think, “Well, if you’re that sick, we shouldn’t ask that much of you.”

This blog is not a journal. What I write here is a very specific subset of all that I am, experience, or know. This blog is a devotional act; I asked Baphomet to assist with my dying process, and S/he asked that I write about it in exchange. This is not the repository of all that is Del, or even a reliable source of understanding what my day-to-day existence is like. In fact, sometimes I end up taking long DfaD breaks because nothing interesting is going on in regards to my medical stuff.

I do have some things to talk about, medically, for those who are interested.

So as you guys know, I usually hate asking lay people for medical advice. I get more unsolicited advice than someone who publishes their phone number in the newspaper. However, I had these skin irritations that looked an awful lot like psoriasis, and I happened to have a friend with psoriasis, so I asked them if they thought that’s what it was. (It’s worthy to note that these irritations happen to be on a part of the body I need a mirror to see.) They flatly denied it, over and over again. So I kept trying to treat them with OTC creams and ointments, but they continued to itch and flake and be irritated for months.

In other skin related news, I developed these odd brown spots during a recent camping-in-a-campground trip. They weren’t bug bites or burns, and I had three of them (two on my arm and one on my breast). They just appeared one day and have faded a little, but not healed. They are definitely not bruises, either.

So finally, between the two things, I broke down and made an appointment to see a dermatologist. I saw Dr. David Lee in Damascus, and I highly recommend him. He was pleasant, efficient, and his office was very pretty. There’s something about dermatology (especially if you watch Grey’s Anatomy and remember the derm thing) that screams luxury, which is probably why I put this off for so long.

It turned out that the irritations are psoriasis. ::shakes head:: I need to listen to my gut more often. They will likely never fully go away, and I may develop more spots like these over time. It’s not uncommon for people with immune system issues to develop psoriasis, as it is in itself an immune dysfunction. I got some steroidal cream for them and it seems to be working well.

The doc was pretty sure the brown dots are nothing to be worried about, but the scary word “biopsy” was thrown around a lot. We decided in the end to wait three months, and when he checks on my psorasis he’ll also see if they’re still there – and if they are, it’s ‘take a bite out of Del’ time. Great. This will be the fourth cancer scare I’ve been through. Whoopie.

Anyway, there’s your medical update. Please go look at the other blog, and maybe subscribe to the updates there, too. I’d really like it if you online stalkers got a much more rounded view of who I am and what my life is like. Also, I write about sex. You like sex, right?

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