Author Archives: Sewbiwan

Starting recorder lessons!

About two years ago I picked up one of my kid’s old recorders, a lime green plastic thing that made a sound so shrill, it was like some kind of auditory drill bit designed to bore a hole right through the side of your head. Preferably near your ears, so the pain of listening to the sound would eventually stop.

I held this thing, and like trying to quiet a squirming wild animal, I attempted to tame this plastic tube of torture, to make it create a sound that didn’t hurt my brain. After a few minutes, it happened. With breath modulation and patience, I was able to get a sound out of it that didn’t make me want to stab someone, or myself, or the wall. It felt like a very small but significant life triumph.

High on my accomplishment, I naturally decided I should learn to play the recorder. I bought a book to learn, but it was all duets, so I bought an alto recorder and then learned the soprano and the alto together. I worked on this for a few days, long enough to acquire around six notes. But those were all the notes I needed to sit in my bathroom with my two recorders and my ukulele, and put together a very bad duet with myself, with ukulele accompaniment, using the Garage Band app on my iPad:

On my Soundcloud account, someone has apparently downloaded this musical monstrosity twice. Two entire times. I imagine it’s out there somewhere being used as an example of what happens when adult music learning goes wrong. But that’s not all: the joke version I did with a drum line got downloaded three times.

As I continue doing the Konmari method of tidying-up, I came across my alto recorder (I can’t find the green one). I thought about getting letting it go, but I after tooting a few notes, I really did want to play again. I dug out that same old book, learned those same six notes, and have just been messing about with it. Eventually, I realized I ought to take a lesson, which I finally did today. My teacher both plays recorders and makes them, and as well as learn a new scale and get a bunch of tips on breathwork and playing, I got hear him play some beautiful music, and see his workshop. There is so much more to recorder than people realize! It’s a beautiful instrument, not a Renaissance torture device!

Listen to this:

Plus, it’s a cheap instrument to get into, and the plastic Yamaha I bought off Amazon is actually a great beginner instrument. And there are a lot of YouTube videos for the beginning recorder player. My favorite channel by far is hosted by Sarah Jeffrey, who has 12k subscribers (to a recorder channel), and is so much fun to watch and learn from! She’s a professional recorder player (yes, those exist), a Brit who lives in the Netherlands, and she makes about one video a week on various topics relating to playing the recorder.

Sarah says, in an interview:

There is so much information about the recorder, but a lot of it is only available if you go and study at a consevatorium or something, and I really strongly believe this information should be available for everybody. No matter where you live in the world, no matter your financial situation, you should be able to access this information. If we keep it just locked up inside the walls of a conservatory, then classical music is always going to stay elitist, and the recorder is always going to stay in some weird niche market, unless we bring it out!

Anyone want to join me? I got this book of duets just sitting here….

MD on Twitter tells me to see a “real” doctor, not a “quack” naturopath

Due to nothing so much as a lack of attention to social media other than Facebook, I rarely post to Twitter intentionally. Mostly what goes on my feed (@sewbiwan) is links to my blog posts that are auto-posted for me. So I was surprised yesterday when I checked my feed today and realized I’d missed some replies. In response to my last post, I’m leaving Bastyr and moving on to a new naturopath, I saw this:

He’s referring to a blogger I enjoy and follow, Naturopathic Diaries, written by a former naturopath. Really interesting stuff, definitely worth checking out if you’ve ever had an interest in how and what naturopaths learn. Bastyr, our local naturopathic university, isn’t too happy with her and has actually sent her a cease and desist letter. I got a cease and desist letter once, for giving a business a poor review on my website (way back in ’96 – wow I’m old), so I know a little about this. I’ve read the posts Bastyr is upset about, and their letter just makes it look like the blogger is right and they’re afraid. I agree with the blog writer that it’s important information to talk about. If Bastyr is so afraid of her revealing something, then that says a lot about what they might have to hide.

You might wonder why I enjoy an anti-naturopathic blog but am seeing a naturopath. My worldview is that science is the best lens we have through which to observe the known universe, and while not perfect (just as people aren’t perfect), good scientific data trumps most things (nearly everything – I’m struggling to think of an exception), most of the time. That said, there’s theory, and there’s experience. I have experience with ten years of good medical care from smart, well-educated MDs. They are great people, with a lot of ideas, and they’ve been able to do nothing for my CFS/Fibro (I’ve been diagnosed with both).

If the theory is that evidence-based-science rules all, then I should have made some progress. Yet, since I’ve been diagnosed, I’ve gotten steadily worse over time. Does that make me say, “MDs are quacks”? No. Science can only know what it observes, and unfortunately, very few people have looked at these disorders, and what research is taking place, is still deep in trials and testing phases. The Stanford program, for instance, took me nearly a year to get into and only made me sicker (caveat: my new naturopath suspects that the Stanford antivirals program might work much better after we’ve fixed some other things). The science is baby-new and conclusions are drawn and then re-drawn on a regular basis.

Where does that leave me? Up shit creek, is where it leaves me, every single day. Every single day that I can’t hold a job, go back to school and finish my degree, take the trips I want to take (from across town to across the world), do enough chores to keep the house looking tidy, or give my kids all the experiences I want to expose them to before they grow up and leave the house.

Up shit creek is where you’ll find naturopaths. They’re used to seeing people at the end of their ropes. Both the naturopaths I saw recently said almost the same thing to me, “All I see are outliers.” If some of these MDs weren’t so busy making people who are going to see naturopaths feel like ignorant sheep, they might notice that these human beings (often very sick human beings) are going to see these “quacks” because MD’s aren’t offering them squat.

For years I avoided seeing a naturopath because I thought exactly the way this guy does. They’re quacks! Bastyr charges their naturopath students thousands of dollars to learn homeopathy. And yet, I couldn’t help but notice that the few people with chronic illness I’ve met, become friends with, or read about, who have seen improvement, have gone to see a naturopath. (Sometimes this professional, like the one I’m seeing, is a “functional medicine” naturopath, and LAAAWD, if you really want to see MD’s get their undies in a twist, talk to them about functional medicine. I dare you.)

When I finally went to see a naturopath, I was prescribed B vitamins, a turmeric supplement, an herbal supplement, and some tea. I thought, “I was right, this is nothing but junk science.” But two weeks later I began improving, and a couple weeks after that felt better than I had in years. My shock at how much lemon balm tea helps my anxiety led me to study herbal medicine again. And yes, the Andrographis Plus didn’t work – in a kind of spectacular fashion – but it was the most promising result I’d ever had from any treatment, ever.

Do I buy into some belief that naturopaths are better than MD’s for everything? No. Do I think they might have some interesting ideas about CFS? Yes. And since my insurance pays for them, which means I’m not out $$$ every time I see one, it behooves me to at least try. Not because I’m anti-science, but because I’m pro-doing-anything-to-get-better.

And so I replied.

And then he replies:

I wasn’t surprised to get this. Always, the assumption is that the person just isn’t doing it right. But what killed me was that the article he links to has outdated information! It’s wrong. It recommends the GET protocol, graded exercise, which has been shown to be based on bad science and probably hurt thousands of people. This article tells you what you need to know about that. It was truly awful.

Also ironic: his linked article is written by the National Health Service, which is Britain’s medical system. A good friend of mine lived in Britain for many years and struggled with many of the same health issues that I do (though not the same diagnosis). She finally found help with – wait for it – a functional medicine doc. My friend is an intelligent, educated, rational person, but she also found herself stuck in a system that couldn’t do much to help, so she went elsewhere and whaddya know, found someone outside the traditional system, who helped her make significant progress.

So I wrote back:

He responds:

He has no leg to stand on here. His response is basically to tell me that I should avoid quackery (which in his view is all naturopaths), and go to a REAL doctor doing evidence-based medicine. But in the same breath, he admits that “No one has good answers to CFS,” and what he suggests is “small-scale work on antiviral agents”, which is, first of all, exactly what I’ve already tried. Not that he should know my medical history, or have read my blog, but why be so arrogant to assume that I’ve not tried a “real” doctor in the past?

Not to mention, he’s proving my point: the science is still in its infancy! It’s ridiculous to tell someone “go get some evidence-based medicine” and point to some study of a few hundred Italians when this is not a standard protocol that any patient off the street can access! My own GP, a very insightful physician in a highly-rated hospital, wouldn’t prescribe me antivirals because she wasn’t aware of any of this research, nor was this approach, to her knowledge, standardized in any way. My hematologist told me the exact same thing, essentially, “I don’t know what they’re doing at Stanford, but I can’t just prescribe something to you because you say some researcher somewhere had some positive results with it.”

So I did find my way to Stanford, after a year of waiting, and a trip that cost (with plane fare) over a thousand dollars. But then this Twitter guy tells me to just go find an MD who practices “evidence-based medicine”? Because it’s that easy? Once I do that, I won’t need these “quacks” anymore?

It’s this kind of arrogance combined with ignorant assumptions that people with chronic conditions have to deal with every single day. Science has not been kind to these sorts of conditions, first mocking the people who presented with them in the first place, then finally deigning to give us a tiny slice of the research pie. That tiny slice has not yielded anywhere near enough treatment options for the nearly 3 million people with CFS.

Thanks, but no thanks. Criticize naturopathy all you want, I don’t care. I don’t take it personally. I’m not invested in naturopaths being seen as valid to anyone, and I’m happy to see pseudoscience take a beating with well-run studies and lots of data. But what I do care about is getting well, and ten years of evidence-based medicine has done absolutely nothing to help, so don’t criticize those of us whose desperation has brought us to something you look down your nose at, and don’t pretend that science has any reliable answers to CFS that are in any way accessible to the masses.

 

 

I’m leaving the Bastyr Center and moving on to a new naturopath

I’ve written about being a patient at the Bastyr Center for Natural Health several times. Initially, I felt very positively about the whole thing. That has changed. For readers who are here because they’re following this healing journey of mine, I wanted to update you.

It wasn’t my experience with the Andrographis Plus that is why I left. Sure, that was freaky and absolutely no fun. But when you have an illness that no one understands or can even diagnose properly, let alone treat with any success, trial and error comes with the territory.

Here’s why I left: 

The communication at Bastyr between doctor and patient, and clinic and patient, is poor. When I was having those sky-high blood pressure attacks, I wrote about that to my Bastyr doc. No response. The website says they’ll get back to you within 48 hours. When I called the front desk later and said this was frustrating, the woman I spoke to shared a personal difficulty that my doctor was going through, that was absolutely none of my business. Not only that, but the indirect message of her tone suggested I was kind of an asshole for feeling frustrated at all.

Doctors are humans, and so are their families. Their lives are filled with the same stresses and frailties inherent in all of our existences. But it’s not appropriate to tell me, a patient, what is going on in my doc’s personal life as an explanation for why they weren’t getting back to me. And it’s pretty crass to suggest that the patient, who literally went to the ER with high blood pressure thanks to her Bastyr medicine, shouldn’t have every right to feel frustrated when they are promised a response they never receive. Every doc there should have another doc that’s covering for them, and if that isn’t possible, for whatever reason, then I should simply be told, “Our apologies, there was an emergency.” That’s all that needed to be said.

When I finally did get an appointment, my doc suggested a new herb to try, Lomatium. She said she’d prescribe a tincture, and that I was to take 10 drops to start, and then work up to 20 drops a day. Fine, sounds good. I’m very familiar with tinctures.

When I got down to the Bastyr dispensary, I was anxious, tired, and wanted to go home, so when the woman running the counter charged me $46 for what I assumed would be a small bottle of tincture, I felt grumpy but said nothing. I really want to get well. If it costs $46 for a bottle of tincture, okay.

Until she passed over a tiny bottle wrapped up in an ice pack. “It has to be kept cold,” she said.

“Um….okay.”

As we were driving home, and I unwrapped it, only then did I realize that it wasn’t Lomatium tincture, it was “Lomatium isolate”, and it was a dram. A tiny bottle. A dram of liquid has 20 drops in it. Which means that if I took it as prescribed, once I’d tapered up, I’d need one dram a day. That’s almost $1400 a month.

Why does anyone need an isolate, anyway? Turns out that Lomatium is an incredibly interesting herb, but about 1% of folks get a rash. The isolate keeps you from getting the rash. But we don’t even know if I’m in that 1%, and even then, I don’t want to take something that will cost $1400/month.

I called the dispensary and asked to return it, since I never opened it. It’s still sitting in my fridge. I was told there are no returns on prescriptions, full stop, thank you, the end. She said if I hadn’t wanted it, I shouldn’t have paid for it. How am I supposed to know what I want? I’m not the doctor. I’m sick, and I’m coming here because a major symptom of mine is brain fog. Why am I responsible for my doctor’s mistake?

So I wrote to the doc via the Bastyr app for patients and said, what is going on? I’m happy to try a Lomatium tincture, but what is this? I waited. I called and asked why I wasn’t getting a response, they said she was busy and would get back to me soon. I waited. Eight days later, after my second call to the clinic, she wrote back, and apologized. She’s trying to get the dispensary to make an exception and give me my money back. She’d let me know when she heard back. Meanwhile, if I wanted to order a tincture through them, I could do that, and she would give me instructions. I immediately wrote back and said I’d already purchased my own tincture (from Herb Pharm for $14), and that I would love instructions for taking that. I got no response. That was four days ago.

I’ve just had enough. I’m tired. Bastyr seems to want you to keep coming back, but it’s not keeping up its end of anything. They couldn’t even schedule me an appointment with her again, because they didn’t know her schedule. They said, “Try back next Tuesday,” and when I did, I was told they still didn’t know and had no idea when they’d know. ???

As a patient, I shouldn’t have to feel exhausted dealing with my practitioner. I shouldn’t have to feel like my messages are going into the ether, and that there is no one higher in the clinic who can take over for my doc and help me get clarity on basic things like my prescriptions or my treatment plan. If my own doc can’t respond, that’s fine, but then have someone else get back to me to tell me the status of my case. Don’t leave me hanging for days, weeks. And when you make a mistake, fix it, especially when that fix is as easy as issuing me a check for $46.

Where I’ve gone to now:

I’ve been reading a website called CFS Remission. I discovered it many months ago, but found it hard to read. I still find it hard to read, but I’ve slogged through enough at this point to be intrigued by the guy’s experience, and especially his approaches at addressing gut bacteria. As I was stumbling around, I discovered his doc is actually in Seattle, and not only that, she’s in my neighborhood.

I went to see her today. I was very impressed. She’s very intelligent, and strong, and wonderfully nerdy about her field. Every idea she had, she explained to me, starting with the science but then breaking down any concept I didn’t recognize. She recognized research I’d read, and was very familiar with the research at Stanford. She’s the first doc to actually seem to have her nose in every bit of research that I’d looked at about this.

She’s clearly a big biochemistry geek, which was fun to watch. At one point, noticing the look on my face, she grabbed a sheet of paper and drew me a diagram. I really enjoyed this, I never tire of listening to people talk about what they’re passionate about, and in this case, what she’s passionate about is the exact medicine that might help me. She didn’t make me any promises, and she was very clear that while she thinks and hopes I can get better, it won’t be easy. Things can get worse before they get improve, as we try things, tweak things. It was reassuring to feel like I knew exactly where we both stood. She also made a plan, and informed me exactly where to find her notes online, and how to contact her, and reassured me she had ample back-up in case I had an emergency and she wasn’t available.

I left feeling hopeful. But then I always write that, don’t I? I left feeling hopeful. I have a lot of hope. I’m so sick of being sick. I will just keep trying things until I can’t try things anymore. That’s all I can do. I will just keep doing it.

Time for bed.

 

New blog design, sans bells and whistles

I’m doing Marie Kondo’s Konmari method of tidying up the house. I love her books. I started using her method in January but stopped after I got sicker, and was having trouble letting go of things. Now I’m back at it, with renewed determination. I just bought her new book, The Manga of Tidying Up, and it’s a delight from the first frame. I just love this woman.

I finished tidying clothes in about three days, and have now moved on to books. She advises leaving memorabilia for last, because it’s so emotionally charged, but I found books to be pretty charged and difficult to tidy. In the end I was able to get all my books onto just one of our three big shelves, with room to spare, and filled 7 brown paper grocery bags to get sold back to a bookstore. It was a triumph, but it was tough! Books represent so much. Giving away a book I meant to read but didn’t, felt like wasted potential. Something I should have learned but failed to get to. I had to continuously remind myself that if I’ve had them this long and haven’t read them, I probably won’t get around to it. Though that didn’t stop me from keeping a couple dozen for a “to read” shelf. We’ll see if I really get to those.

While pulling things off the shelf, I found a few blank books that both myself and my daughter had bought. I held each one in my hands – as you do (does it spark joy?) – and pondered why I never used them. I realized it was because the books were too fancy. I felt a lot of pressure when I went to use them.

It’s the same with the blog. I want to blog more but don’t, because all the newer blog themes are too fancy. I feel like “they” (whoever chooses themes for the database) wants me to create a product, something I should be selling. There’s nothing wrong with that, with creating a brand for that purpose. Who knows, that might be my path someday. But for now, and for the last few years, blogging has only been about building a connection with others, through mutual hobbies, and especially through sharing the burden of living with a chronic illness. It may sound strange, but when I feel like the blog theme – the “notebook” – I’m using is too fancy, that it wanted more from me than I wanted to give it, I didn’t want to write in it.

So, back to an un-fancy theme. There wasn’t even a place to put in a menu of social media icons. Now that’s ancient technology. All this theme wants is a title and a few paragraphs. For now, that’s exactly what I want to give it.