So… I wanted to follow up my recent posts, which have been somewhat heavy, with a post to check in about some of the good things going on in my life!
I’ve always wanted to try doing one of those Friday round-up posts so many bloggers do, so I thought I’d give this a go.
First of all– it’s warm out! The days are getting longer! I can finally take my aquatic workouts outside!.
Everything about aquatic exercise becomes fun (and fashionable!) again.
One of my favorite aquatic workout items is a rash guard, like the one above. They’re technically made for surfing/paddleboarding/other water sports, to protect your skin from the saltwater and sun.
But hey… those of us in the water for rehab purposes absolutely deserve comfort and sun protection as well, especially when it’s not super warm out!
Summer is also the time when I tend to explore new exercises, and even come up with more of my own exercises.
It’s just…. you feel so much more free. I love my gym pool, especially when I can catch a 30-minute block of time with it all to myself at the end of the day.
But there’s nothing like being outside… it brings me right back to being a kid.
A kid with slightly different toys:
I really love the Aqua Jogger company because there are so many different things you can do with their equipment. Some of the exercises are geared more towards athletes rehabbing an injury than the chronic pain crowd. But I’ve actually been a member of both of those crowds, now that I think of it, and I really respect their brand. They offer a complete workout system, which no one else really does.
I’m currently renewing my focus on trying to be a more centered person. I find that when I make time to get in touch with myself at the core of my being, it’s like I remember there’s a deeper purpose to life. I feel like I always sort of know that, deep down, but often it gets covered up by the the hustle and bustle of daily life.
If you wanted to try out some different approaches, here are some free meditations, by the way, offered by the UCLA Mindfulness Awareness Research Center.
You can also check out the Calm app, which has a bunch of free meditations as well.
Additionally, something I really love is group meditations. While solitude can be really key, I think there’s also something to be said for joining in a group of people for a common, spiritual (if you believe that) purpose.
This is something I’ve really enjoyed in the past, and this summer I’ll be looking for groups in my area to get involved in.
Getting out and about
I wrote a post a few years ago on the “Little Things.” It’s about how, even though some of us might not be able to physically handle a vacation, or even a long day trip, we can still bring the mindset of a “vacation” to the things we have to do.
Running errands? Try driving a different route. You may pass something scenic you didn’t know was there.
Have a doctor’s appointment in a town you’ve never been to? Check out a local coffee shop afterwards.
This is something I try to do, whenever I have the opportunity. I’ve gotten in the habit of bringing my little touchscreen Chromebook with me wherever I go, in case I feel like sitting in a cafe and doing some writing.
So… life might not always allow us to have huge adventures. But that doesn’t mean the little things can’t add up.
What are you looking forward to about the summer? Do you find it makes your exercise routine easier? Let me know!
Sometimes I just can’t believe the personal details I put online. To be honest, I think that’s why I don’t work on this blog as often as My Sacroiliac Joint Saga. It’s super easy to provide people with factual information, with only a few personal tidbits thrown in.
This blog, though? This is the one I almost don’t want anyone to read. (Except not really, so keep reading!).
But I also know that what I put out there can help people– and it helps me, to know that I’m helping others.
So I thought I’d share with you why I decided to “fire” my primary care doctor, who I’ve been seeing for over ten years. This also means I’ll be leaving the medical practice I’ve literally been a patient at for my entire life (my Mom took me there when I was a baby).
As some of you know, I recently ended up in the emergency room fearing I had nerve damage, following what should have been a routine adjustment at the chiropractor. I’m lucky that it did not turn out to be permanent. However, the entire thing was incredibly stressful for me– I was in and out of two emergency rooms. I cried, I hyperventilated, I thought I was going to faint. I mean… imagine wondering if you were going to be walking like a drunk person for your entire life? My heart goes out to the people for whom this is permanent. I’d had no idea what it was like.
As you can imagine, this entire thing was incredibly stressful on my body. Normally my resting heart rate is fairly low (once a long-distance runner, always a long-distance runner!). But the stress and fear kept it soaring all weekend long. At one point, one of the nurses strongly suggested I take the anxiety medication they were offering me because, medically speaking, they wouldn’t be able to discharge me with my heart rate as high as it was.
And then, 24 hours after that, when I was still walking funny and not totally convinced I was going to recover, my period came.
And it wasn’t a normal period for me. I know that it’s common for some women to experience spotting or early periods due to stress, but it has literally never happened to me before. It didn’t feel like a normal period– this felt less like a gently flowing river, and more like an avalanche. I had cramps I’d never experienced before.
In retrospect, it probably would have made more sense for me to follow up with my OB-gyn’s office about this. But I was still sort of in panic mode, and not thinking clearly. So I went to my default option and called my primary doctor’s office. After all, that’s what my discharge instructions from the emergency room said to do.
And I could not believe how rude she was to me.
Normally, this doctor is very polite. She and I haven’t always seen eye to eye over the years, when it comes to things like fibromyalgia and central sensitization. My impression is that she doesn’t really know what central sensitization is– like many doctors I’ve met, it seems to be hard-wired into her brain that any symptoms of this sort have to be connected to mental health.
However, at the same time, she never turned me down when I asked for a referral to see a specialist, or a physical therapist. My requests were always processed promptly, so I felt like our difference in perspectives wasn’t necessarily affecting the outcome of my care. (Because really, a primary care doctor isn’t the one I’d expect to have answers about central sensitization or SI joint dysfunction anyway).
But that day, I saw how our difference in philosophy could have life-altering implications.
Because we weren’t talking about musculoskeletal pain, we were actually talking about my reproductive system.
And she was totally dismissive. It turned out later she’d tried to send me a message telling me I should follow up with my OB-gyn, but at the same time, her staff members were calling me to try to set up a same-day appointment with her. So, reasonably, I expected that she wanted me to come in.
So I got into the room with her and told her I was concerned about this strange early period, as it was totally abnormal for me. I wanted to make sure that between the chiropractic adjustment and the potential nerve damage (which had not officially been ruled out) nothing weird was going on with my uterus.
And she looked at me like I had two heads. “You know your insurance is going to charge you a lot if I do a pelvic exam on you, right? Those are expensive.”
Her tone and her expression, though, were not out of concern. Instead, they seemed to be out of annoyance.
“The hospital discharged you for a reason. And you’re still worried?”
In my head, I thought Why is this woman not just examining me?
She continued, “You know, a pelvic exam isn’t really going to rule out everything that could be wrong with your uterus. For that, you really need an ultrasound” (which they weren’t going to be able to perform at her office).
We sort of stared at each other for a few seconds and finally, the ten years of being dismissed got to me.
I said, “You know, I have to be honest. I don’t really feel like you’re taking this seriously. I’m starting to feel like I shouldn’t have come here… why did you let me come here? You should have just told me to go straight to the OB-gyn for an ultrasound.”
That’s when she paused, and gulped. “I did tell you that… I sent you a message online telling you I thought that’s where you should follow up.”
Then she realized her mistake. She’d assumed that I’d seen her message, and decided to come in to her office anyway, like some paranoid hypochondriac who wanted to be seen in two places, when one would suffice. That’s why she was being so dismissive.
I felt the anger welling up inside me, but I’m proud of myself because I kept it classy. I said, “So, without the ultrasound, we don’t really know what’s wrong? So we can’t really say there’s nothing wrong with my uterus, can we?”
Embarrassed, she shook her head no.
And I’m telling you– I am so proud of myself for the way I handled this. I kept it polite, but we both knew how much in the wrong she was. I said, “I don’t mean to be rude, but I’m going to call my OB-gyn right now, before they go home for the day. Because this is still potentially an emergency.”
And I literally took out my phone and called them right there, with her sitting in the exam room.
To be fair, although the doctor didn’t outright admit her mistake, she did apologize for “looking as though she wasn’t taking it seriously.” She did nod her head in agreement as I told the person at the OB-gyn’s office that this was potentially an emergency.
But I will be switching primary care doctors now, because this was just too much for me. A difference in philosophical outlook is one thing– but when it affects how my case is handled in a potential emergency situation, it’s time to move on.
After all this, I did end up speaking with the OB doctor who was on call that day– the same one who performed my surgery, actually– and she reassured me that there was nothing to worry about. That it was just due to stress, and that I wasn’t in enough pain for it to sound concerning. I ended up having an ultrasound anyway, in a non-emergency setting, and it turned out normal. So, everything did turn out okay.
But I will still be switching, because enough is enough. It’s taken me a long time, over the years, to believe in myself, and that I am worthy of respect. Ten years ago, I don’t know that I would have been brave enough, or composed enough, to handle this situation the way I did.
So, like so many things to come out of that horrible weekend, at least everything turned out alright in the end, and now I can see it as a learning experience. In a way, I suppose I am grateful for this, too.
Today I wanted to share with you this post from my friend Clare over at Jelly-Like Joints.
Clare is a science-lover and “bookish crafter” –a book lover who also enjoys arts and crafts. She was born with a genetic condition that affects her connective tissues. This causes her to have hypermobile joints, along with chronic pain and other symptoms.
In her post, Clare writes about how she’s been struggling with some new symptoms lately, specifically in regards to her voice. (Connective tissue disorders can cause a wide range of symptoms, because connective tissue can be found just about everywhere in your body).
I wanted to share her post with you because I really admired her mindset– it’s the approach I try to take as well, when I have setbacks.
Which is to take a step back and say, ok. I have this new problem I wasn’t expecting. But that also means there are new potential solutions out there I haven’t tried.
Of course, this is easier said than done. And I admit, it is not always my immediate reaction. But when I work through the anger and frustration, this is usually the point I get to that feels right, that lets me know I’m on the right path.
Keep going. Don’t stop looking for answers.
So what I really admired about Clare’s post is how, not only is she mentioning things that could be helpful to her, she keeps trying to help others at the same time.
You may notice that she’s included a link to one of my blog posts ;) I also struggle with hypermobile joints, however mine are hypermobile for a different reason. I am very fortunate not to have a connective tissue disorder… I was just born with joints that don’t fit together in the most stable way, making them more prone to pain and potential injury. (It just happens to some people, through luck of the genetic lottery).
I also really thought the part about the acupressure mat was interesting. For those that don’t know, the term proprioception means a general awareness of where your body is in space, and the different stimuli affecting it. Our sense of balance, for example, depends on different types of proprioceptive input through our nervous system.
Sometimes when we have a chronic illness, or injury, or chronic pain, our sense of proprioception to different parts of our body can be impeded, so an important part of therapy is to help the nervous system “remember” to check for different types of information.
That is something the acupressure mat could do, by giving TONS of information to our nervous system about what’s going on with your feet! So I thought that was cool.
Anyway, I hope you’re doing well, and that you all head on over to check out Jelly-Like Joints!
Technically, I suppose it’s bad form to brag about how much traffic you’ve been getting on your blog.
However, I feel like it’s a little different when a positive message comes with the bragging, so I wanted to share some of my updates with you all.
I’ve come so far from where I was when I wrote my first post about the sacroiliac joint. Despite everything I’d already been through with central sensitization and learning to believe in myself, I still had trouble taking myself seriously when it came to the SI joints.
I mean, I remember why I thought that way, when none of the doctors or physical therapists I saw seemed to know what I was talking about.
But now I know from running my blogs, and hearing from all of the readers who’ve shared their stories with me, that I was far from alone. I’ve been hearing from so many different people, and I think it’s safe to say that just about everyone who struggles with SI joint dysfunction feels this same way at first.
So, a big thank you to everyone who’s shared their story with me. Technically, you’ve been reaching out to me for help, but in the end, I think I’ve benefited as much as you. It’s meant so much to me to know that I was never alone, either, and that the topic I was so afraid to write about is now the topic that’s getting me the most views.
In that spirit, I wanted to share my traffic stats from February with you. My traffic over on My Sacroiliac Joint Saga has been increasing each month, and in February it hit an all-time high, of over 15,000 views.
While I wish Sunlight in Winter got anywhere near this much traffic, it just goes to show how many people there are out there looking for information on SI joint dysfunction.
I wish I could show you all of the meaningful emails I’ve gotten, but since I keep all my messages confidential, these numbers will have to do.
But to me, sharing these numbers with you isn’t about bragging– it’s about proof that good can come from sharing the parts of your story you think no one will want to hear.
She’s a therapist who is dealing with chronic illness. Recently, she wrote about her experience attending a chronic pain support group that incorporated some of the theories of modern pain science… but did so very badly.
As someone who fervently believes in what pain science has to offer — it’s what originally inspired me to become a physical therapist– I have often felt many of her same frustrations, when people try to stretch pain science beyond the limits of its intended applications, or when they lump in their own personal beliefs about pain which have nothing to do with the actual scientific literature on the subject.
Reading her post, it sounds as though the social worker leading the class did have a basic understanding of pain science.
(By modern pain science, I mean the school of thought that says that pain is a function of our brains that’s meant to protect us, and as a protective mechanism, it doesn’t always work perfectly, or give us an accurate way to gauge what’s actually happening in our bodies. People can experience devastating injuries and feel no pain, or they can experience excruciating pain from injuries that are technically “minor.” Pain scientists believe this knowledge can help us develop new treatment approaches, once we begin to tap into the fact that pain is here to protect us. Some of the original proponents of this approach include David Butler and Lorimer Moseley).
It sounds as though Chronically Undiagnosed’s group leader did present some of these anecdotes, to prove that pain can be subjective. But she did so in a way that was alienating to the group participants.
“The instructors have cited reports of individuals who have either been injured and experienced no pain, or individuals who thought they were injured (but were not) and experienced extreme pain. One example was of a roofer who landed on a 6-inch nail that went through his steel toed boot who presented in the E.R with reports of excruciating pain. He was medicated for pain and the boot removed where it was discovered that the nail had gone through his shoe but between his toes, resulting in zero tissue damage. Additionally pictures of MRI’s were shown where a person had visible spine damage but no pain.
As someone with an advanced degree who has studied and taught research and statistics, I find fault with their examples. In a scientifically based research study, extreme results such as these are considered “outliers” and are not considered statistically significant. And as someone who has both counseled patients with chronic pain and experienced it daily for over 5 years, I find their assumptions to be not only scientifically incorrect but harmful to people experiencing chronic pain.
And now here come the people touting “modern pain science” as a breakthrough in treating pain. If pain is simply a perception created by the brain, then if we change our brains the pain should go away. When I expressed my concerns to the leader of the group she suggested that leading medical institutions in our country (such as Stanford, where I received “injections” that helped me) are “behind” in understanding pain.”
Reading about her experience made me really frustrated and sad, because I had a totally opposite experience when first presented with this information.
However, when I first came across it (under the guidance of my physical therapist Tim, and through watching physiotherapist Neil Pearson‘s lectures) I understood these stories– which ARE statistical outliers– to simply be examples illustrating how pain works.
They are extreme examples, but they demonstrate the fact that pain does not always provide an accurate indication of what is wrong in our bodies. These stories are meant to educate, not to give people the impression that they ought to be able to magically “turn off” the pain in their brains tomorrow.
Following this, it sounds as though the social worker leading the group made another key mistake, one that I absolutely can’t stand:
She lumped her own personal beliefs about pain in with the theories of modern pain science, without making any distinction in between the two.
Years later, when I had finally discovered pain neurophysiology education, I found that the people actually researching modern pain science never talked about childhood trauma (or any other kind of psychological trauma). They didn’t need to– the theory of pain as an imperfect protective mechanism was enough to explain so many of the things that could sometimes go wrong with it.
That’s not to say that no one, ever, experiences physical pain as a result of emotional trauma. That’s not what I’m trying to say either. But it’s wrong to be leading a group where you’re presenting people with the theories of modern pain science, and lump in your own personal beliefs about pain without making a distinction.
She did actually lump in other grains of truth.
Some of the other information Chronically Undiagnosed’s social worker presented is, technically, legitimate.
It is true that MRI’s are not always the best predictors of who will actually experience back pain. There’s a great book, Back Sense, that talks about this.
In a nutshell, if you were to take 100 people off the street and take an MRI of everyone’s spine, you wouldn’t necessarily be able to tell, just by looking at the MRI’s, who was actually experiencing back pain.
We all experience some degeneration to our spines over time, but sometimes this degeneration can be symptom-less.
However, this information should never be used to tell a group of chronic pain patients they shouldn’t be experiencing any pain!
All of these bits of knowledge, which can be helpful– whether it’s pain science, or Back Sense– are meant to be one piece of the puzzle!
And they are meant to help illuminate aspects of patients’ experience. They are meant to educate.
They are not meant to blame people, or make them feel responsible for experiencing pain they shouldn’t be feeling!
I see this far too often in the field of pain science.
As a (hopeful) future physical therapist, I’ve followed a number of physical therapists, writers, and researchers on various social media platforms, hoping to learn more about how the field of pain science is evolving.
Unfortunately, I’ve had to go back and actually “unfollow” a bunch of people, because I see the same thing over and over again. People will get annoyed and actually downright snarky about patients and fellow medical professionals trying to treat certain conditions which are the subject of controversy– the sort of “gray areas.”
One of these areas, in particular, is the sacroiliac joint. There are a lot of physical therapists out there who don’t believe sacroiliac joint dysfunction is a real thing.
So I’ll sign on to Twitter, and find that someone I respected and followed to learn more about pain science is tweeting out some kind of derogatory commentary about how “the sacroiliac joint doesn’t really move” and what a “sham” it is that people are trying to treat it.
I suppose the evidence for sacroiliac joint dysfunction is really a topic for another post, however to me it’s just another example of people trying to take pain science too far.
Ultimately, I believe these physical therapists’ anger stems from a good place. From their perspective, they’re probably tired of seeing other medical professionals “waste” patients’ time by treating them for musculoskeletal causes of pain, when they should be focusing on the nervous system.
But really, there are two sides of the same coin.
Yes, pain originates in our brains. And our brains can shut pain off, in emergency situations.
But that doesn’t mean patients’ pain isn’t valid. That doesn’t mean that, once you put them in a 3-hour class where they hear about extreme examples of people not experiencing pain, they should automatically be able to “turn off” their own pain.
No approach will work if you don’t listen to people. No approach will work if you aren’t kind. That’s really the bottom line.
Pain science should be used to educate– not to deny the other potential reasons someone could be experiencing pain.
Just as MRI’s aren’t always accurate indicators of who will have back pain, it doesn’t mean that someone in excruciating pain shouldn’t have an MRI.
All of these things represent aspects of the truth, but no one piece should ever be a substitute for looking at the whole picture.
P.S. Please don’t worry, there are plenty of ways to learn about pain science from people who actually do get it!