I do have mast cell activation syndrome.

Hi everyone!

First of all, I’m sorry for some of the posts that have seemed to go back on forth on whether or not I actually have Mast Cell Activation Syndrome (or MCAS, for short).   First of all, I don’t want to have it.  Secondly, it’s been kind of hard to get a straight answer out of the first specialist I’ve seen about it.

However, since then, I’ve seen a few more specialists (including one world-famous one– I somehow got in after being on her waiting list for only a month, even though technically she’s booking a year out for new patients!).

So… what it comes down to is that, yes, I do have mast cell activation syndrome.

What is it?

Essentially, mast cells are a critical part of our immune system.  In the case of a “normal” allergy, when something we’re allergic to triggers the mast cells, they are what release all of the chemicals responsible for the subsequent allergic reaction.

This can be relatively mild, in the case of, say, a pollen allergy.  Or it can be life-threatening, in the case of a food allergy.

Mast cell activation syndrome, however, is much more complicated, because the mast cells are overactive.  So, they release their contents way too often, in response to seemingly-random triggers, including foods, medications, alcohol, and even exercise,and stress.

This diagnosis is really terrifying, at least at first, because basically, you learn that you’re at risk for anaphylaxis (a potentially life-threatening allergic reaction) and you might not even know what the cause was.

It’s different from a “regular” allergy because your mast cells can freak out even if it’s something you aren’t technically allergic to.

For example, I now get hives on my skin after eating certain foods… even if it’s foods that I’ve been tested and shown not being allergic to.

It sounds crazy, right?  I know.  That’s what I thought, too.  And that’s still how I feel, most of the time, when these symptoms are happening to me.

At first, after learning about this, I was in a very dark place.  I joined a bunch of Facebook groups with other patients to learn more about the disease, and although I learned a ton, I was also very, very scared by what I read.

Since meeting with two specialists who are way more familiar with mast cell than anyone I’ve seen previously, however, I’ve been feeling a bit better.  I’ve learned that there are people who find a way to make the condition manageable… or even to make it go into remission.

The other thing I really, really struggled with at first is “Why me?”.  Why, after everything else I’ve been through, would I develop another weird and debilitating health condition?

But, the more I learn about it, the more I think it actually makes sense.  People tend to develop MCAS after a very stressful or traumatic period in their lives.  Often, it can be what is known as “secondary MCAS”– triggered by another health condition that causes the body to freak out.

And the good news is that, according to Dr. Castells (one of the specialists I’ve seen), often when you can treat that initial trigger, you can actually make the MCAS go away.

I do not know what my initial trigger was, exactly, but I have a very strange feeling that my MCAS actually first started a few years ago, albeit on a much more minor scale.

It started when I was around 30, and still dealing with SI joint dysfunction.  My entire life was on hold, and I could barely walk.

Most of the time, I managed to keep my head up and not be too stressed out about the impact SIJD was having on my life.  But for some reason, around the age of 30, a bunch of things all went wrong at the same time.  Some of the people who’d been the most important to me– not just my family but also a few close friends– also seemed to lose patience with me, and the fact that I wasn’t getting any better.

I don’t want to go too much into detail about this at right now (maybe in a subsequent post) but something about losing the support of several people who I’d really cared about had a devastating effect on me.

Actually, it was traumatizing– I know that’s a strong word, but I think many of you with a chronic illness or disability will be able to relate.

Because I wasn’t a healthy, fit person who could take care of herself.  I was someone who could barely walk, and at the time, still didn’t understand what was happening to her.  It was very, very scary to try to move through life not knowing when my hips were going to do this mysterious locking thing, and I wouldn’t be able to move normally.  It was also really difficult, emotionally, to have this problem no one else seemed to understand (I hadn’t found any of my good PT’s and doctors yet) and so to lose the support of people who had been there for me was devastating.

And that is when my allergies started.  Or, at least, what I thought were allergies.

I’ve written about them before.  I even had started another blog about them, which I hadn’t had time to really get into yet.

But now that I’ve learned more, and look back, I don’t think what I had was just allergies.  I think that was actually the beginning of my mast cell activation syndrome.  Because, although I only tested positive for allergies to dust and mold, I was freakishly sensitive to everything.  

Every place I lived, something was wrong and I couldn’t breathe.  I even lived with roommates who were also allergic to dust and mold, yet I was the one who was always suffering.

I tested negative for being allergic to cats, yet often times, I’d try to pat someone’s cat and find my nose was itching and my eyes were watering.

Now it actually does all make sense.  Yes, I am allergic to dust and mold, but there is also another layer entirely going on, making everything more intense.

So… for now, I am doing my best to remain optimistic.

A big turning point for me, even before I met Dr. Castells, was when I read her interviews with Yasmina, the Low-Histamine Chef.   That was when I learned how much diet, exercise, and lifestyle could affect mast cell disease, and possibly even make it go into remission.   (Click here for the interviews: Part 1 and Part 2).

I’ve also been to an in-person support group (the Massachusetts chapter of The Mastocytosis Society— mastocytosis is another disease that’s very similar to MCAS).  At that meeting, I met people with MCAS and mastocytosis who had managed to make it go into remission.  It was really great to get support and to see that people had eventually found a way to make these diagnoses manageable.

One of the reasons mast cell disease is so difficult to get diagnosed, much less treat, right now is because so few doctors are familiar with it.  Mastocytosis has been known for a few decades, so more doctors are likely to have heard of it.

However, mast cell activation syndrome has only been much more recently recognized– in fact, a small working group of doctors only first came up with a name for it in 2007.  Here we are in 2018 and still, many in the medical field haven’t even heard of it.   Apparently, it’s even still controversial among some allergists (like so many of the medical conditions we now understand today).

So… I am still going.

It took me a while, to get up the resolve to pick my head up and even try to move forward.  But hearing the stories of others, as well as better understanding the roots of my own condition, have helped me to make a lot more sense of it.

I’m reminding myself that I’ve been through other health scenarios that once looked totally hopeless, and somehow, I found a way out of them.  So I’m going to do my best to make that be the case here.

I’ve converted my “allergy” blog into a blog about mast cell activation.  It’s actually still in “rough draft” form, where I’m taking notes just for me.  This is actually how My Sacroiliac Joint Saga began, at one point in time.

But starting my SI joint blog, even when it was just for me, taking notes, ended up being the very key to finding my path toward healing, as it put me in the mindset to keep learning and taking in information.

So I’m going to put all the lessons I’ve learned from managing past health conditions to work here, too, and we’ll see how far I get.

Piecing it together

Well, this has certainly been a strange year for me and weird medical problems (may I remind you of my one week of temporary paralysis, following a chiropractor visit back in May).

It turns out that, apparently, my last post announcing that I’d been diagnosed with mast cell activation syndrome may have been a bit premature.

For some reason, during my first visit with my new allergist at Beth Israel (one of the major medical centers in Boston), I’d gotten the impression that my diagnosis was absolute.

However, I’ve since met with her two other times, and apparently my clinical picture is not as clear-cut as it had seemed at the first visit.  (Or, perhaps I misunderstood something at that first visit when I was busy trying not to burst into tears).

Things are a bit more calm now for me, and I’m starting to piece a lot more of the facts together.

I thought I’d share them with you here.  Although I’m really upset that any of this happened, in a way I am proud of myself for the way I handled it.

As some of you know, part of what took me so long to recover from SI joint dysfunction was the fact that I didn’t believe in myself; didn’t believe that there were answers out there for me.

So when I got “I don’t know” for an answer from a doctor or a PT, I sort of internalized that as a reflection on me.   That I had a “weird” problem, one that no one else could understand.  So I’d let a lot of time go by after one thing failed, before trying something new.

I’ve learned from that experience, though, and now I am like a totally different person.

For now I will spare you the details of some of the indignities I’ve faced.  Other to say that, because some of my symptoms have been atypical and don’t necessarily fit the classic signs of an allergic emergency, people have been downright rude to me.  By this, I mean emergency room staff and even…. quite surprisingly, my new primary care doctor, who I had really liked.

But I stuck it out.  I had my regular allergist at a small local medical center near me who believed that something really was going on with me, but that it was a bit more than she had the tools to diagnose.  (That’s why she referred me to BI).

And the more I’ve met with specialists– the allergist and also two dermatologist, because a lot of my symptoms have involved strange rashes/hives/things going on with my skin– the more I’ve been affirmed.

The same spots the ER doctor told me were “nothing,” all three of the specialists confirmed to be hives.  It’s just that they can look different, on different people.

This has really just been such a brutal time.  I don’t understand why people would treat me with suspicion.  After all, it’s not like allergic reactions come with any fun drugs.  It’s not as if I’d gone in there asking for painkillers (although I would of course still be upset at being treated this way, and rightly so).

But allergies?  I don’t know.  I don’t get it.

Right now, though, I can’t control other people.  I can only control myself.

So right now I’m trying to take control of the situation as much as I can.

Part of the uncertainty, I realized, may come from the fact that there’s a disconnect between dermatology and allergy.

While I technically have “hives,” hives are not always a sign of a dangerous allergic reaction.  I’ve been learning that sometimes they can also be part of a much smaller chemical signalling pathway that has only to do with the skin.  So, while I may still have mast cell, it’s been a huge relief to know I don’t have to freak out every time I scratch an itch and end up with a hive (this is part of a non-dangerous condition called dermatographia).

So I’ll be going back this week, to dermatology and allergy.  I’m going to ask my doctors to communicate with each other about what they’ve found.

And maybe I don’t have mast cell activation syndrome.  It’s still too soon to say for sure.

But right now I am proud of myself because this time around, I’ve internalized nothing.

If those ER doctors don’t get it, well, forget them.

At least that’s the one good thing that’s come out of this, as well as my weird chiropractor paralysis episode.

A younger me would have thought there’s something wrong with me, for having problems other people don’t understand.

Now nothing slows me down.  When people dismiss me, I bounce back and fight harder.

Heat, Fibromyalgia, & Central Sensitivity Syndrome (or, why I can’t handle being hot!).

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Favorite spot: right in front of the AC :)

Hi!  So.. I try to keep the posts on my blog mostly cheerful.   I always want my blog to be a place that reflects a sense of hope and healing, where people can come to feel uplifted.

But… I also blog to share my truth with people, and to connect.

And the truth is that I have central sensitization syndrome, or fibromyalgia (still working out which term I think is best).

I’ve been concentrating so much on writing my SI joint blog recently that I haven’t been writing so much about pain science, in general.

But the past few weeks, it’s been hot.  Really hot.

And now I’m reminded, on a personal level, how central sensitization really isn’t just about pain.  Instead, it’s about everything our central nervous system is responsible for regulating… and the fact that our ability to regulate it has been thrown off.

Something that should be so small, for another person… for people with central sensitization, it can be huge.

I’m about to tell you why I’ve been so miserable, and why, so far, I’ve spent most of the weekend just lying on my bed.

As I write this, I feel like what I’m going to say sounds so silly, so benign.  But this is the reality of struggling with central sensitization– our symptoms can sound ridiculous to other people.  They can even sound ridiculous to us.  But they are still happening.

So I will tell you that my apartment is too hot.  

I should spare you the boring details, but this post won’t make sense if I don’t explain that this is my first summer in this new apartment.  I don’t have central AC in this place, as I have in summers past.  I’ve been trying to get away with one small window air conditioner for my whole place, and it’s been an epic fail.

I know what I’m saying might sound ridiculous to the average person.  Because it’s not really a big deal, right?   Just buy another air conditioner and move on.

But for me, this situation is reminding me, so strongly, that I really do have a problem with central sensitization.

Because sometimes, my body doesn’t let me just “move on.”  It’s not just like I just noticed that I felt hot.  I’ve been exhausted.

I feel like I didn’t get any warning.  I didn’t just have some mild discomfort and then think “oh, I should probably do something about the fact that my apartment is so hot.”

Instead, it hit me like a ton of bricks.  Like a virus.

Originally, I’d wanted to wait and see if one AC was enough, before buying a second.  When it first started to get hot a few weeks ago, I thought I could just spend most of my time in the bedroom (my air conditioned room) and limit my time in the rest of the place.

But no.

As the summer’s gotten hotter, I’ve found that I don’t just get hot.  I get exhausted, quickly: I can’t think clearly.  I go on anxiety spirals.

I’ve constantly felt like I’ve been coming down with something… but I haven’t actually gotten sick.

If I leave my air conditioned bedroom and walk into the 82-degree living room for 5 minutes, I get dizzy.

This is crazy, right?  I know it sounds crazy.  It doesn’t make sense!   

But that doesn’t mean I’m not also experiencing it.

I noticed that if I retreat back to my 74-degree bedroom, after about 20 minutes, I’ll start to feel calm again.  My anxiety will go away, and my thoughts will become rational again.

But apparently, I really can’t handle even the back and forth to the rest of the apartment, even if I have my cool bedroom to go back to.

I know plenty of people who live this way, no problem.

And I know a few people who barely use their air conditioners at all.

I know that what I’m experiencing sounds extreme.  And yet, it’s happening.

I think it’s a heightened version of the way everyone gets tired, when they’re overheated.  It’s how our body protects us, by forcing us to stay still and keep cool.

Only my body is perceiving the walk from my bedroom to the kitchen as a threat to homeostasis– or, in other words, its ability to keep things regulated.

Research

Honestly, I was getting pretty upset, when I remembered to do what I always do, in the end: slow down.  Take a deep breath.  And do some reading.  Remember that there is a name for what I’m experiencing, and that I always feel better when I try to learn about it.

So I went back and watched my favorite video from Dr. Sletten at the Mayo Clinic:

I shared this video in my last post too…  I guess I probably can’t share it in every post (or can I?!).  But it really pulled me out of the depths of despair right now, so of course I had to share it again.  (Thank you, Dr. Sletten!  I’ve never met you but I feel like I’m your biggest Internet fan!).

This video is really the most reassuring thing I’ve found out there.

In the first screenshot, which I took at the 2:30 mark, Dr. Sletten outlines some of the various systems our body uses to maintain homeostasis:

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He explains, “If you’re too hot, you might to go to a place to cool off.  If you’re thirsty, you might drink some water.  If you have to go the bathroom, you go to the bathroom.”  These are all ways in which we respond to the input that our peripheral nervous system gives us, in order to take care of our body.

As he says, “The signal itself is not abnormal.”

The problem sets in when these signals get upregulated– meaning a stronger and stronger signal gets sent to the brain.

The somatosensory cortex is the part of our brain that processes all of these sensations coming from our body.  When these signals are upregulated, that means they’re stronger and more uncomfortable.

In the red marker below, you can see where he wrote a list of some of the sensations and triggers that can arise when the nervous system has been sensitized.  He included temperature as a potential trigger, as well as a change in barometric pressure (which I, personally, haven’t experienced, but I would imagine this would make people feel as crazy as I feel right now).

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So, honestly.. I don’t really know how to fix this.

I’ve come a long way in managing the chronic musculoskeletal pain aspect of this, using an awesome approach called pain neurophysiology education.   But that doesn’t mean that central sensitization is completely reversible (although new treatments are being researched every day!).

For now, I personally feel better if I can just learn about it.

To know there are other people out there going through the same thing, and that there are doctors and researchers out there who won’t think I’m crazy.  To know that it’s not “in my head,” although it is in my nervous system.

I just need to know this about myself.  I have symptoms of central sensitization, and one of them is that I don’t handle heat well.   Temperature is not something I can be too flexible with.

Does anyone else out there experience this?

I know this post was not my normal cheerful, upbeat post.  I’m genuinely curious if anyone else out there goes through this.

Dr. Sletten’s video helped me a lot, but if anyone else out there feels the same way, please let me know!

And, whether or not heat is a factor for you, I hope you’re enjoying the summer!

Me… I’ll be off to buy another air conditioner now.  :)

Related:

So, I think I *do* have fibromyalgia, after all.

Wow… the past few months have been full of changes for me!  There’s been a lot to deal with… but at the same time, I’ve been learning from it, and figuring a lot out.

I don’t always feel inspired to share super personal stuff on this blog, but I’ve heard from a few readers — including a few friends from real life, who decided to check out my blog– who reminded me that sharing these personal details can really help others.  So I feel moved to share some of my epiphanies with you all, for whoever may see this.

Epiphany #1.

This epiphany actually dates back to a conversation I had with another girl at my friend John’s birthday, a few months ago.  (This was before I ended up in the ER after a chiropractor visit, and subsequently fired my primary care doctor).

The girl I was speaking with, Jess, is a nurse at a primary care office.  We had never met before but she was just one of those really caring, empathetic people who’s easy to talk to.

I found myself opening up to her about my story– my health issues, chronic pain, the SI joint.

“Do you have fibromyalgia?” she asked me, stopping me in the middle of my story.

“Well, no,” I answered.  “Not really.  I have some of the symptoms, but no one’s ever really diagnosed me with it.”

She looked at me questioningly, so I continued.

“I mean, I don’t know, maybe I have it… I’ve just never really seen a doctor who seems to believe it’s a real thing.  My primary care doctor has always thought it’s in my head, and that I’m depressed.”

Now I really had her attention.

Her eyes widened and she said, “We see people in our office with fibromyalgia all the time.  It’s not an uncommon diagnosis.  Just because your doctor doesn’t believe it’s real, doesn’t mean you don’t have it.”

Somehow, Jess was about to put the entire past ten years of my life into a different perspective.

She continued, “You know, just because someone has a medical degree, it doesn’t make them the be-all, end-all authority.  They’re just people. You have to listen to yourself.  You deserve help.  Maybe there’s a better doctor out there for you.”

I was just honestly floored by this.

Jess started telling me how the doctor she worked for not only believed that fibromyalgia was a real diagnosis, but was willing (and confident) in treating patients with it herself.  Whereas my former PCP responded that it “had to be” a mental health issue, this doctor actually prescribed medication.  Not for depression or anxiety, but for fibromyalgia itself, as its own diagnosis.  And how this doctor believed her patients, and had sympathy for them and their struggles.

I couldn’t believe what I was hearing– it was like Jess was describing another world.

Since then, I’ve been reading more recent, up-to-date articles on fibromyalgia… and I think Jess is right.  

I think I do have it.

I’m not sure why I’ve always thought of my chronic pain issues as separate from fibromyalgia.  I think there’s a combination factors– the biggest of which, of course, is I’ve never met a medical professional who believed it was real.

I don’t know why this is.  I seemed to have bad luck, getting one doctor after another who believed chronic pain had to be linked to mental health.

I want to be clear about the fact that I have found significant relief through pain neurophysiology education, which I talk about on this blog. 

It’s a special form of physical therapy that teaches chronic pain patients how to work with their nervous system, rather than against it.  It’s an amazing way to reduce the cycle of chronic pain.  I can honestly say that my physical therapist Tim, who studied with pain researcher Neil Pearson, is the only medical professional who ever truly understood my pain issues.

But Jess made me realize that maybe I do deserve to have doctors treating me, who actually believe in me.  

You know what?  I still have pain.  (Pain neurophysiology education never promises to completely erase your symptoms– only to help you live with them).

The 95 degree heat we’ve been having here in Massachusetts knocks me out, seemingly more than other people.  And I have other symptoms associated with fibromyalgia, as well.  Maybe I do actually have it.

Maybe it’s a little bit ridiculous– and unnecessary– to go it alone.

Ultimately, I almost think it’s a lack of self-compassion that’s kept me from trying harder to find a doctor who believed in fibromyalgia.  Despite everything I knew intellectually about the science, on some level I had sort of internalized the idea that I was a “weird” case, or a “mental health case,” because that’s how my former primary doctor made me feel.

Looking back, I think I accepted the idea that there was no one who could help me, way too soon.

However, seeing how my former doctor reacted to my chiropractic scare really put things into perspective.

As I wrote about in this post, this experience helped me see her shortcomings a lot more clearly, compared to chronic pain.

When it was actually a question of my being paralyzed, or having damage to my reproductive organs, I saw how her inability to empathize, or actually acknowledge all of the symptoms I was presenting, actually had real world consequences.

So I switched doctors… and I’m so glad I did.

I’ll share more later about what I’ve been learning from my new doctor.  But for right now, I really wanted to address this fibromyalgia question.

Because I’ve been going back and reading recent articles online, and I’m changing my perspective.  

Fibromyalgia isn’t just one symptom of central sensitization… it is central sensitization.

The Mayo Clinic explains:

“Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain’s pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals.”

Yes, that’s me.  That is what I have.  I don’t know why I didn’t see it before.

Going forward:

I’m going to do myself a favor, and see myself as someone who legitimately has fibromyalgia and deserves help.

I have written this so many times on my blog.   Believe in yourself, believe in yourself, believe in yourself.  It’s a lesson I’ve had to learn so many times over, and am still learning.   Unfortunately (or fortunately, depending on how you look at it), it’s a lesson life never seems to stop offering me opportunities to learn.

I’m not quite sure exactly what implications this has for my future treatment.  I do think that, despite my lack of diagnosis, I’ve still tried most of the treatments available to fibromyalgia patients.  (I’ve tried just about all of the medications, with no success).

But… who knows?  Maybe something else is out there for me.  And going through life answering “no” when people asked me if I had fibromyalgia was probably not going to help me find it.

So… that’s all for now.

I actually have a few other epiphanies coming up to share with you– it has been such an intense (but good!) time for me, learning wise.

Hope you stay tuned!

Related posts you may want to check out:

Why I fired my primary care doctor after 10+ years.

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I’m still weird about putting too many pictures of myself online… here’s a nice sunglasses selfie!

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.

So she has said some things over the years that really irked me, or sounded skeptical when I described sacroiliac joint dysfunction.

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.

End note:

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.