Your Arguments Don’t Make Sense and I’m Still in Pain

I’ve been in a funk for the last month. Which is an extension of the funk I’ve been in for the last six months, which is an extension of the funk I’ve been in for the last few years.

I’m in pain.

This isn’t new, of course — pain started for me in my early 20s with my ulcerative colitis, increased with my diagnosis of ankylosing spondylitis in my late 20s, jumped higher still in my late 30s with the development of Crohn’s fistulas, pushed even higher in my 40s with degenerative disk disease in my neck and the spread of my AS to my shoulder joints, then reached what I thought was a complete tipping point a few years later with the development of peripheral neuropathy from my diabetes. And then I developed fibromyalgia, which although not present every day of the year, comes in several-month long waves where it takes over every. single. joint and muscle. Add that to the everyday pain I was already suffering and I thought I was going to lose my mind (spoiler alert: I’ve already lost my mind and I don’t have any more to lose).*

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I hear the gallop, gallop, gallop of my heart.

My pain was so bad that beyond my subjective reports of how bad it was (which, to be honest, don’t amount to a hill of beans in the medical world), that my blood pressure had gone from its previous normal of about 110/70 to about 140/100 and rising. We were starting to have conversations about blood pressure medications.

Instead I convinced my family doctor to refer me to a pain specialist and in the meantime, we switched my pain medications to a different and more powerful narcotic.

Suddenly my blood pressure was normal again.

This isn’t a coincidence. Blood pressure is a pretty standard measure of pain in hospital settings: It’s one of the reasons they take your blood pressure in the ER and then ask you if it’s different compared to your ‘normal.’ About five years ago I had pancreatitis and refused pain meds and my blood pressure started going so high that they gently but firmly insisted I accept morphine. It settled back down. My pain decreased. Until the fibro started and things got tricky again, of course, and I asked for more help.

Pain causes stress on your body. That emotional stress causes stress on your heart. This is one of the reasons why it is so important to manage pain. In spite of that, there has been a growing movement in the pain management community to turn away from narcotic painkillers in chronic pain management care.

The goal of this new movement is to focus on the quality of life of the patient and the changes which can be made to accomplish that (rather than focusing on completely extinguishing pain). These options include non-narcotic drug options (in the case of neuropathy and fibromyalgia – anti-depressants such as Cymbalta or anti-seizure medications like Lyrica), exercise, psychotherapy (cognitive behavioural therapy), group talk therapy and a variety of other techniques. The goal of the non-drug therapies is not to eliminate pain, but to learn to live with the pain.

Actual advice from my pain doctor:

NON-DRUG THERAPIES

“Stronger pain medications exist, but since they are unlikely to work, we will not give them to you.

Narcotics have the potential for abuse and have withdrawal symptoms.

“If you talk to others about your pain, at least you won’t feel alone.” But you will still feel pain.

“Physio, massage and talk therapy are temporarily helpful but some people still appreciate them.” Of course the benefits are completely defeated by the stress and pain of the ride there and ride back, and emotional stress of dealing with yet another doctor.

DRUG THERAPIES

Anti-depressants don’t work for everyone, but they might work for you so you should at least try them.

Reads black box warnings: Lyrica has the potential for abuse. Use with caution.” “Many Cymbalta users experience serious withdrawal symptoms.

“Yes it’s possible that taking Cymbalta could send you into a manic episode, but we can deal with that when it happens, and maybe give you other drugs to counteract that.” “No I can’t see you every few weeks to monitor you.”

“Yes some patients on Lyrica gain weight, but not all and it’s not that big a deal.” Except that doctors check your weight and BMI every visit, so clearly they think it is important. Zyprexa made me gain 40 lbs. I have diabetes. And joint pain that is worsened with weight gain. And I also suffer from body dysmorphia triggered by weight gain. But no big deal.

*

Doctors: You are not making sense. Get your arguments straight, stop applying double-standards that are associated more with the stigma of prescribing narcotics than they are with the actual risk (or benefit) of narcotics to the patient. You can’t use one argument against narcotics and then ignore the exact same argument when it suits you.

All you are telling me that it creates an easier standard of care for you.

/rk

*This roadmap of pain doesn’t include all the other little side trips along the way like pneumonia, asthma, costochondritis, bursitis, general fatigue of autoimmune disease, vitamin D, B12, and iron deficiencies, pernicious anemia, bipolar disorder, anxiety, OCD, major depressive episodes, schizoaffective episodes, Achilles tendonitis, brain fog, POTS, possible Sjogren’s (still waiting on that one), yadda yadda yadda.

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Sometimes the Whole Doesn’t Equal the Sum of the Parts

You can only bury your identity for so long. There will always be people around you who say that labels don’t matter, or that how people perceive you doesn’t matter, and while that certainly sounds sensible and logical, it kind of adds up to bullshit.

We all want to be seen for what and who we are. Even if what we are doesn’t conform to the package we might present with (especially if what we really are doesn’t conform with the package we present with), we still have a desire for people to see the real us.

Pragmatists can argue all they want about how it’s what’s inside that counts, and that our happiness shouldn’t be determined by other people’s acceptance, and that you shouldn’t worry so much about what other people think anyway, but those people can shut the fuck up. It sucks to interact with the world and cringe every time you are mis-named or mis-labeled or mis-gendered. It’s an involuntary reaction. You can’t control your discomfort — even if you try to internalize those feelings, a glaring red buzzer goes off in your brain every time someone gets it wrong.

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That’s not my name. That’s not who I am.

Think about that time that dude you worked with called you the wrong name and then you were too embarrassed to let him know, and now every time he sees you he still gets it wrong — are you cool with that? Or does it bug you every. single. time?

Even more simple than that — don’t you get irritated when you give the Starbucks barista your name and she writes it wrong on your cup? No seriously — do you brush it off or do you tell everyone about it for the rest of the day?

Being seen — really seen — is a basic human need.

We all need an identity. Of course part of that identity is what we do in life, the kind of person we are (our morals, our spirituality, our driving force), and a variety of other things, but at the core of our identity are our gender and sexuality (or at least terms that define those in some way).

I don’t think that gender and sexuality are necessarily more important than other aspects of our identity, but because they impact how we relate to others in terms of psychosocial interactions, they tend to be the focus of how we define ourselves. It also naturally follows that because these are the first two identities assigned to us at birth, they end up being attributed as having primary importance.

It’s understandable then, why this is so problematic: The attributes that are at the core of our identities — name, gender and sex — are chosen for us, rather than by us.

Obviously it might be a bit impractical to avoid assigning any of these identities until children reach puberty, but it would certainly be an interesting societal shift if at age 13 we could all have a re-naming ceremony where we decided for ourselves what and who we are. Even that doesn’t satisfy me completely — I think identity can be fluid. I think maybe it should be fluid. In the space of an eighty-year lifetime, why should we be expected to be static beings? Why must we be content to stay in our boxes?

With each label we are assigned as babies, there comes a set of expectations. This means that we are moulded by those expectations, rather than left to grow into who we really are. Even something as simple as the choice of a name can change us because of how those around us make both conscious and subconscious assumptions associated with our moniker. People (think they) know the difference between a Brad and a Brody and a Matt, or a Judith and a Jenny and a Muffy.

So even if labels shouldn’t matter, the reality is that we’ve already been labeled — wanting to re-label ourselves so that people get it right is a pretty natural reaction to what is already an unnatural situation.

For some, making changes coincides with physical transitioning which helps their bodies match the label that they identify with. For others, making changes is not so simple. Not everyone can (or wants to) fit into a normative box. Just because someone is male or female doesn’t mean they will fit into a straight-edged box of how society defines what is male or female. In many cases, a person isn’t going to fit into either binary label. And really, what is the point of setting that as a goal anyway? If we are going to define ourselves, why feel constricted by how society defines those labels?

I suppose the most obvious answer to that question is that labels only work if the person you’re communicating with knows what they mean. That’s certainly been the criticism that people have levelled against they/xe pronouns. I think that’s a lazy excuse. Every day we apply and use unique labels for the people we meet — their names. We don’t say, “I’m sorry, it’s too complicated to call you Dave. I’m going to call you Steve, just like I use for all my friends. Calling you your own name is too much work to remember.” We learn our friends’ names, and when we meet someone new, we don’t assume that their name is Steve — we ask — and then use the right name from then on (unless we’re complete jerks).

The fact that some people are more complicated in the sense that they don’t fit established labels only makes them unique. But we’re all unique. We all possess unique characteristics that make up our character and identity, and people remember those unique characteristics. You know that Bob is your friend who loves show tunes, and that Becka is your friend who loves grapes but only the seedless kind.

When we ask the people around us to use the correct labels or names to identify us, we’re asking for no more than what we all do already for the people we care about: For them to know us and see us for who we really are. By asking, we’re just pointing out that yes, this is a thing that really matters to me. It’s not asking for special treatment — it’s something you should already be doing for someone you care about. It’s just pointing you in the right direction.

When you refuse or ignore your friend’s request to acknowledge their real self, it’s a pretty fundamental rejection. You’re saying, “you’re not worth it.” It’s like telling your friend that you’re allergic to peanuts and they keep offering you peanut butter and jelly sandwiches every time you come over. Quite frankly, if you do that to me, I’m going to decide very quickly that we’re not friends. That’s not me being ‘picky’ — that’s you being a crappy friend.

And who needs crappy friends?

/rk

Polyamorous Fairytales Are the Best Fairytales

A very clever writer named Natalie Zina Walschots is putting together a collection of Polyamorous Fairytales that I’m pretty stoked about, and selfishly I’d like you to help support that project so that I can read them (because happy poly fairies are awesome).

The project is in the pre-Kickstarter stage at the moment, with a super-cool Christmas sweater (and t-shirt… and sweatshirt) fundraiser. Now’s your chance to buy one of these original-design shirts (which feature four different triple-stag poly-friendly motifs) and get in with the cool kids.

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Visit the Hearts On Our Sleeve page at Teespring to see all the designs, styles and prices. But do it fast! They’re only available for a limited time.

Here’s a how Natalie describes the project: “Everyone is looking for their fairytale ending, and everyone’s perfect happily-ever-after is beautifully, gloriously different. Love is big and strange, plentiful and ever-changing. It unlocks new rooms in our hearts–rooms we had no idea were waiting. Fairytales are similarly strange narratives, full of peril and transformation, and it’s no wonder we turn to them as the template for our own love stories. More than anything else, fairytales have been my guide through my own arduous quests, monstrous riddles, and magic spells to be broken.

But fairytales, for all their curiosity and subversiveness, still often end with a neat pair: a prince and a princess, a queen and a king. A rescue and a marriage and a tidy coupling. However, there are so many kinds of happy endings, so many love stories, that end in other wonderful configurations. Princesses who walk off hand in hand instead of competing for the prince. Companies of knights who lovingly adventure together for the rest of their days. Magicians and nymphs who love liminal space snap moving between them. Witches with wonderful friends who shoo away all their suitors and are thrilled on their own. Kings and queens who delightedly look forward to the occasional visit from the dashing duke two kingdoms over. There aren’t enough of those stories in the world.”

For more info about the project you can visit the Facebook page.