A couple of months ago I discovered the joy of spin pins.
They can apparently “do the work of 20 bobby pins”. I shudder at the thought of any hairstyle that requires 20 bobby pins so I haven’t tested this claim, but I can say that these spiral pins are amazing. There are so many things you can do with them, and they hold hair tight and pain-free.
While everyone else takes joy in the pixie, I’m growing out a pixie from 18 months ago. It isn’t Officially Long yet, it’s at that really annoying length. Long enough to get in my way, not long enough to do anything useful.
What’s saved me is two things: my summer discovery that I could use my copious store of knit fabric and a serger to make very comfortable headbands, and spiral pins. I don’t like ponytails, I have a sensitive head and elastics hurt. I don’t even own any hair elastics anymore, I just don’t need them. After experimenting with spin pins, I found I could go pain-free for hours and hours with two buns on either side of my head.
They aren’t quite as close to the ears as Leia’s, but they’re close-ish. I love channeling her, and I highly recommend the experience for any spoonie (person with a chronic illness). When I get up in the morning and put up my Leia buns, I feel a little bit of her strength. Just enough.For extra fun, you can pull a little bit of hair out of the center, and you let it artfully fly around (you can channel Leia and Phoebe Buffay at the same time, if you’re so inclined).
In the last two months, this bullshit illness has worsened. Tonight I realized that it’s reached the point where I need my shower bench every time I use the shower. I bought it a year ago, because my hips and low back would seize up with severe pain, and holding onto the stool as I stepped over the side of the tub would give me the extra balance I needed. But it was a convenience item. It had novelty. I only used it for one or two showers out of ten, and if books or magazines were stacked on top from my last bath, I could just hold the side of the tub and be extra slow and cautious. The stool was nice to have around, but it didn’t make the difference between whether I got a shower or not.
My therapist is a great person that I’ve been seeing off and on for a few years. Off when things are calm, on when the panic disorder is blaring for whatever reason. He’s fantastic at his work, a real gift to the profession, and I just stumbled into his office because his address listed him close to my house and I was too anxious to drive any farther. For a couple years I saw him every two weeks, with frequent longer breaks, which, much like the shower stool, felt like something I kept around because it was reassuring to have, but I told myself it wasn’t like I absolutely needed it.
In the last six months, we’ve shifted to every week. I need the therapy. I absolutely receive measurable benefit from those hours. I wish I could say I have to go because I’m a little extra anxious, but all we talk about is coping with CFS. It has come to dominate everything. I hate it for that.
It’s probably going to dominate this blog. I had intended to write mostly about sewing, and then it shifted to where I hoped it would be half sewing and half sailing adventures: a reflection of what I believed would make a pretty great life. But I haven’t sewn in weeks. The work of cutting everything out and getting it together is too tiring, and I’m in the middle of a flare. In the calendar year of 2017, I think we sailed twice. Once during my birthday, when we thought the herb andrographus was turning everything around and we were so full of (mistaken) hope. Now we’ve started talking about selling my little Elska. Greg isn’t pushing for it, he still loves sailing. But he’s said, “I think I’m finally ready to talk about it.” It feels like I have this big, beloved dog, that I have to think about rehoming because I can’t give it exercise.
I’ve been very lucky in some big ways, and it’s felt overwhelmingly important to acknowledge that. I’ve been married for twenty-two years to someone I love more every day. Cheesy, but true. We managed to have two great kids (who I won’t write a great deal about to respect their privacy). And in this ridiculous, unfair, punishing economy, I have access to general financial stability and excellent health insurance. As a non-working disabled person. I mean, come on, that just seems like so much (knock on wood, kenahora). What is there to be upset about? A little fatigue? A little exhaustion? Waking up in pain every day? Not getting anything done? Never feeling like a good parent, wife, or friend? Being unable to finish your degree or have any kind of professional life? Big deal. There are worse things.
I’ve internalized this train of thought. I actively avoid my own negative feelings related to living with CFS, because it doesn’t even seem fair to have them when I live with such good things, too. Those feelings have been piling up for years. Today, in therapy, I accidentally walked right into them (he would probably say it wasn’t an accident). I don’t even remember the conversation beforehand. It was like wandering through the woods, looking up at the trees, and then tripping over a log and stumbling a few feet forward into a clearing, looking up, and realizing you were surrounded by wolves – except not wolves because I love dogs. Maybe bears. But they don’t really hunt in packs. Okay, pretend bears hunt in packs. And aren’t furry, or cute.
Whatever. The point is: doom was inevitable. It was too late to back away. Here it was, and I was meeting it. “Ohhh no,” I thought. “Well, here we go,” and there I went. Within 45 minutes I’d gone through an entire box of Kleenex. As the first wad was rolled up, my therapist pulled the wire trash basket out from under his desk and set it in front of me, without missing a beat. Good job, man.
You see I am used to saying, “Hips and back are really hurting today,” in a friendly, nonchalant way, to explain why I’m not bending over to get something off the floor, or why I need help lifting something. I’m used to saying, “I’m sorry, I’m just too tired right now,” when I get invited to something. Sometimes I say, “It’s been a hard day.” And sometimes I just need to cry because I’m so tired and in so much pain and I hate being so tired and in so much damn pain, and it’s been days since I did anything useful like washed a dish or ran a load of laundry, and I just point to the ceiling (meaning I’m retiring to our bedroom) and say with a cracking voice, “I think it’s time for a let-it-out session.” Greg nods and follows me up the stairs, and holds me while I cry.
What I’m not used to is saying, “I can’t do ______, and it hurts.”
Look at that sentence structure. Doesn’t get much more simple than that. Right in front of me all along, under my nose. I went through a list of things. I can’t do this, that, the other thing. On and on. Big things, small things. Parenting things, life goal things, education things, professional life things. Things that are gone. Plans, dreams, deep desires. For every one I thought of, I cried so hard that my therapist, sitting on his chair in front of me, became a blurry haze of navy cable-knit with a head-shape on top and loafers sticking out the bottom. “Am I even looking at his face?” I wondered, through all the water pouring down my cheeks.
I don’t want to write them all down, the things. My things. It will be different for someone else. The things I treasured doing, the things that made me feel alive, it’s easy for someone to dismiss, and I won’t sit for that. Fuck dismissal. We all come alive with different things. For me, the big things that made me come alive, aren’t accessible to me right now. I don’t know if they ever will be, again. And that hurts.
My therapist said this was great work. I laughed and told him I’d bring him a new box of Kleenex. We talked about how hard it can be to sit with emotional pain, especially when we have within ourselves (and are aware of in others) so many judgements about it. Saying it hurts doesn’t mean you’re proclaiming it will never end or is hopeless. It doesn’t mean you’re wallowing. It also doesn’t mean you’re saying it’s the worst thing ever, worse than anything anyone else has ever gone through. It just means: it hurts. And it’s okay to cry about it.
I must have been on a roll, because later tonight I got home and took a shower, and realized while I was sitting there, my head full of shampoo, that I can’t not sit there. If I stand up, I get too dizzy from fatigue and exhaustion. I can take showers without the bench if I’m very careful and I make them very fast (and I don’t wash my hair that well), but it takes so much concentration (and forced optimism) and when I’m done, I’m three times as exhausted than if I had just used the stupid bench.
I got out of the shower, got dressed, went downstairs, and told Greg about it. I said, “I can’t take a shower without sitting down while I’m doing it.” And then I cried a little. And it was okay. No one judged me, and if they did, I think I’d have felt pretty okay telling them to feck off. I didn’t feel a need to judge myself. This illness is hard. It might get better. It might not. Living with it isn’t easy. It is what it is.
I sat with that awareness for a minute, and then I got up and went into the other room, and sat down with Jason and our friend Claire, and watched Pride and Prejudice. Nothing better than celebrating the acknowledgment of difficult emotions than by watching a love story set in a society actively constructed to avoid the unchecked acknowledgment of nearly anything.
“I think a ball is a perfectly irrational way to make new acquaintances.”
Oh, bookish little weirdo after my own heart. Mary and I are the INFPs in the corner at parties, petting the dog and reading the spines of the books on the shelves.
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 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:
Go see a real doctor, not a naturoquack. ND = not a doctor. Read what @NaturoDiaries has to say – she was one until she realised it’s a scam
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.
Have seen many "real" MD's. They haven't been able to do ANYTHING about fibromyalgia/CFS. With ND saw first improvement in ten years.
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:
Wrong. Flew to Stanford University, saw specialists. Also specialists in Seattle. Ten years of actively trying therapies, docs. Only worse.
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’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.
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.
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.