Tag Archives: fibromyalgia

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.

 

I’m not getting better, and that has been hard.

In my second-to-last last post, I wrote a little about our trip to Stanford. I really was full of hope, then. Researching this new option, buying a ticket to California to go to a research hospital and talk to a new doctor; I wanted it to demonstrate to the universe that I was serious about getting well. I wanted the universe to notice. In my previous life, the one before I got sick, I seemed to accomplish a lot by sheer force of will. Greg used to joke that I was an “elemental force” (a partial refernce to M:TG cards, for you fellow nerds).

Sometimes I wonder if it was that ability to just stress myself into oblivion, summoning some great inner resource to compensate for all the things we didn’t know at the time – that I had severe anxiety, that I had ADD – that was actually the cause of my body eventually breaking down. I can’t do that anymore, certainly. Greg and I will even joke about it sometimes. “Yeah I thought about taking that trip, but I can’t elemental-force-it anymore.” I don’t know why I got sick. We can’t know. I share that frustration with nearly everyone who has been diagnosed with something hard and damaging and life-changing. We can spend the rest of our lives asking, “Why?” But it won’t get us anywhere.

The first round of antivirals seemed to go well, for awhile. It felt like my pain was less. How much of that was due to the meds and how much to finally going fully gluten-free (a whole other story), we aren’t sure. But, after about ten days, I began to have these dramatic attacks of fatigue, worse than anything I’ve ever experienced. I’d be sitting in my sewing room and suddenly have to get up, stumble through the laundry room and around to our bedroom, and collapse on the bed, because apparently every mitochondria I had unanimously decided that ATP production was a complete waste of time. If I rested for a couple hours, I’d get a little energy back, but the attacks began hitting over and over. I was declining, rapidly.

I went off the medication, and the attacks immediately stopped. I called my doctor at Stanford. He said it sounded like I was overdoing it. He said this happens a lot, people feel better, they start doing more, and then they crash. My “attacks” were just the consequences of me not pacing myself. Not wanting to be an argumentative patient, after all this guy was two states away and I felt very privileged to have gotten to see him at all, I said, “Sure, that’s probably it.” I took another few days off the meds, then tried again. For three days, bam bam bam, attacks all day, weakness, faintness, couldn’t move. I told him what happened. He agreed I should stop that medication. “Take two weeks off,” he said. “We’ll try another one.”

Summer is usually when I feel my best, so it’s frightening me to watch myself decline during the weeks when I can always count on considerable improvement. I realized the other day that in the last twelve months, I’ve sailed maybe three times. Might be more like one. I can’t recall. I can recall the moorage bill, but I try not to think about that. Whenever I ask Greg if it’s silly to have a tiny boat parked at a marina in a big expensive city, he says, “I’m not willing to give it up yet. Let’s give it another year and see if you get better.”

A real challenge is to find things that make me feel productive while I’m on the couch all day (looking around at the mess I don’t have the strength to clean up). So a few days ago I started a big archiving project for all my photos. I have an account over on Smugmug, and I’ve been creating folders labeled with the year, and then filling them with galleries of photos. It started out great, it felt like very meaningful work. These endless gigabytes of pictures, once organized, would be enjoyed by family and friends for years.

But then, partway through, despair snuck up on me. I kept finding photos of myself, with Greg with the kids, with my friends, and all I could think when I saw myself was, “Look how healthy she is.” That woman had no idea what was coming. But then, we never do, right? Life doesn’t have guarantees. We don’t arrive out of our mother’s womb with a data sheet detailing all our future travels, foibles, tragedies, adventures. If this journey comes with anything, it comes with a warning label. My situation could be a lot worse. I’m very aware of this.

 

Still, in that moment, looking backward in time, I felt so much grief. How much I wanted that body back, that could hike, or stand in the kitchen for hours making food or cleaning up. That mind without the brain fog, the ability to read for hours. And I was so fit! It isn’t that I think being fatter is so awful, but what that lighter body represents to me is the ability I had to exercise, and how great it felt. Back then, damn, you should have seen my calves. I loved my calves. My body took good care of me, then. I could walk, I could run, I could dance, I could bike for miles.

Whenever Beth asks me, “Were my eyes really that big, when I was little?” I show her this photo.

I can’t exercise that way anymore, and if I try to exert myself even a little, I pay for it for days. I’m never not in pain. When my Stanford doctor told me to stop exercising completely, full stop, it was a huge blow. When I told people about that later, some snorted, “I’d love it if my doctor told me that.” But it isn’t funny. I’ve taken a lot of anatomy courses, I know what happens to a heart that isn’t getting healthy stress through exercise on a regular basis. Fat by itself won’t kill you, but being sedentary will. Being told not to exercise frightened me, more than anything else.

Last night, I took my second anti-viral. I was supposed to take a small dose every day for a few weeks, and see how I adjusted to it. Within an hour, I was doubled over in the bathroom with severe cramping and diarrhea (a side effect of this one). I was like that until 3am. I woke up this morning and it felt like my guts had spent the night battling razor blades (and losing). This has gone on all day.

I don’t know what will happen. It’s become my mantra: I don’t know what will happen. If this illness is making me face anything, it’s the stubborn resilience of a bad idea: that my elemental force-y-ness never really died, that I will resurrect it, and use it to get myself out of this. But I’m learning that it isn’t my only tool. It never was. I’ve been reading about mindfulness meditation since I was a teenager, but have I spent the last twenty years diligently practicing being present? No, I practice present-moment avoidance. I’m really good at it. Gold medal, PhD, CEO of the company.

Well, I can’t avoid this. I can’t avoid the not knowing. Maybe the next drug will help, maybe it won’t. Maybe the nutritionist I saw will help, maybe she won’t. Maybe I’ll get worse. Maybe I’ll end up needing a walker or a wheelchair (and maybe that will be okay). Maybe I’ll get better.

Breathe. Look at how beautiful the bamboo is, waving in the backyard, tall and slender and making that lovely noise as they brush up against each other. A quiet, rustling song, sung between themselves. If we ever move, I will miss that sound. We’re supposed to cut the bamboo down, our neighbors will sometimes remind us of this, but it’s so gorgeous. I refuse. Let it grow as high as it wants.

I’m reading Jon Kabat-Zinn’s book, Full Catastrophe Living, for the millionth time. I bought my first copy in my twenties. I just got the most recent edition. I also downloaded the audio version to listen to in my car. It’s about dealing with crises, health or life or whatever arises, with mindfulness. It’s especially for people who are sick or recovering from something.

He talks a lot about the stress of feeling out of control:

If you have a chronic illness or a disability that prevents you from doing what you used to be able to do, whole areas of control may go up in smoke. And if your condition causes you physical pain that has not responded well to medical treatment, the distress you might be feeling can be compounded by emotional turmoil caused by knowing that your condition seems to be beyond even your doctor’s control.

The guy knows what’s he’s talking about.

Right now he’s teaching me the “attitudinal foundations of mindfulness practice”. Every one of these is hard. Of patience, he starts, “Patience is a form of wisdom. It demonstrates that we understand and accept the fact that sometimes things must unfold in their own time.” PREACH IT, JON.

But then he said something that really made me stop. This line, I circled it in the book. Looking back at my old photos of a person in a body that I no longer have, looking at friends and acquaintances and people on the street, people bicycling past me in traffic, even movie stars…wishing I could do what they do, travel around the world, move their bodies, live in the world engaged with a career, engaged in LIFE…crap, the sense of loss will just overwhelm me sometimes.

But then I read this, the thing I circled:

It is impossible to become like somebody else. Your only hope is to become more fully yourself.

It doesn’t have to be only a journey of loss. Loss is here. But maybe it’s also a journey of discovery. If I can be brave enough to accept what’s happening, maybe it will surprise me. Slow down. Look around. Just let the wind bend me a little, like the bamboo. I’ll try.