Have you tried…? Rantiness

I didn’t know what I was going to write about tonight. I’m really exhausted. The dysphoric state passed and today was… functional. Not terrible. I didn’t have a lot of energy, but I got a few things done and didn’t feel utterly miserable the whole day. So… win? But my brain is literally exhausted and creativity is a non-starter tonight.

Then I just checked Facebook while I was sitting here not writing and a friend, who is a very lovely and well-intentioned person, said something that pisses me off. And I KNOW I’ve done it to other friends, so I really shouldn’t be pissed off… it’s almost a natural response, but, I’ve come to realize (in my old age) how obnoxious it is, and I try to curb my own habit of doing it now. Not that I don’t fail at it regularly, but still.

So, I posted a photo of my meds I have to take… About 30 bottles. The bulk of them are for the CIRS (genetic disease), although two are for sleeping and two are for thyroid disease.

This friend asks, “Have you thought about acupuncture?”

Sigh.

Now, she means well. I have done the same thing to other friends, and have to sit on my hands and bite my tongue to not do it as often as the impulse arises…

Here’s the thing.

One, yes, I have thought about acupuncture. I’ve used acupuncture. My doctor is a licensed acupuncturist.

Two, I have a genetic disease that causes toxic cytokine production in my cells which in turn causes major hormone disruption and physiological dysfunction, which in turn results in literal nutritional deficiencies. Acupuncture does not address these things. Acupuncture is lovely and is very useful for certain maladies. IT DOES NOT TREAT CIRS or LYME DISEASE! I hate it when people try to dismiss my diagnosis or my disorder with “Oh, but have you just tried…” Seriously, I’ve been sick for twenty years, do you think I didn’t think of whatever you want to fill in the blank with? And do you know that it is actually dangerous to NOT do the scientifically proven treatment that is keeping me alive in favor of… acupuncture?

Three, I respond poorly to acupuncture, possibly because of my bipolar. Because I have bipolar and anxiety on top of autoimmune disease, AND a genetic disorder, things are a little complicated in my treatment.

I use all the things that help me survive. Last night when I was in a dysphoric state… here are the things we did to help me survive it.

Reduce stimuli – dim lights, no TV, no cell phone, blue light blocking glasses, remove clothing, cool, dark room
Cold water
Gating – physical pain makes endorphins which interrupt the dysphoric neuron cascade
Bach flower remedies
Aromatherapy – essential oils
Acupressure points
Drinking ice water
Chamomile ice cubes (yes, we do keep them in the freezer for this sort of thing…)
And yes, fucking pharmaceuticals, because why would I do EVERYTHING ELSE to help myself and not that?

Seriously, I have as much or more reason to hate drugs (legal ones) as anyone. I was on over 40 different drugs trying to treat my bipolar, in cocktails as many as 10 drugs at a time…

I was on medication from the time I was 16 until about… age 36. I had horrible side effects… some that I lived with.. nausea, vomiting, losing my hair, gaining weight (100 pounds), lethargy, dry mouth (causes cavities), tremors, muscle tics, nightmares, anhedonia, flattened affect, functional aphasia… And there were side effects that almost killed me: extreme high blood sugar, severe pitting edema, swelling of mouth and throat, uterine hemorrhaging, and kidney failure.

I’ve earned the right to hate drugs.

But I don’t have the privilege of being holistic in all the things.

It is a type of privilege. It is… able-bodied privilege to say… “Why don’t you try acupuncture instead?” Because, for me, acupuncture isn’t enough. In fact, it can’t be used on me because of the bad reaction with my bipolar. It is privilege to be able to treat all of your medical issues with only holistic treatments. It is privilege to be able to avoid using pharmaceuticals… It is privilege. And I wish I had it.

But I don’t.

Just like my mom did when she had cancer, I use every tool at my disposal. I use holistic medicine, I use “alternative” medicine, I use old wives remedies (the ones that work), and yes, I use drugs, and supplements, and pharmaceutical-grade vitamins – because I don’t have the privilege of a body that can be functional without them.

If you can stay well on organic food (which I do eat) and acupuncture (which I can’t do), then, honestly, I’m happy for you, and I’m jealous. I’ll be over here with my thirty bottles of “necessary for my continued survival” and will appreciate you respecting my intelligence and my determination by not questioning whether I’ve really done my due diligence in choosing my treatment plan.

CAVEAT: This doesn’t apply to new and novel things someone hears of and thinks I might not have known about and might want to use as a supplemental treatment… Friends tell me about interesting things all the time, and I’m interested in learning about new things, or even discussing supplemental treatments I’m already using. This is about the stupid, obvious, and entitled (yes, I know it’s well-intentioned) suggestions for substitutions to my treatment, like acupuncture or massage or veganism or “eating more kale…” (Kale is not keto-friendly, FYI) in place of my medical treatment.

My doctor once told a student in our medical nutrition class who asked about a “natural” remedy for appendicitis… “I recommend running… straight to the nearest emergency room!” There are times when modern, Westernized medicine really is the best.

I’m not an idiot. I’m not a blind follower of white-coat “expertise”. I am not remotely a passive patient (and I’m sure my doctors would prefer more passivity, but fuck them…) I question everything, I do my own research, and I am constantly learning about my own diseases and treatment options.

Telling me I don’t know what I’m doing (which is the fundamental function of saying that I should try something else instead) is patronizing and doesn’t acknowledge my own work for my own health.

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