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.

I didn’t need one more thing to write about.

If you follow my Facebook page, you may have already seen the news…

Yesterday I was diagnosed with something called mast cell activation syndrome.

It’s taken me a long time to figure out what’s been going on. It all started with a severe allergic reaction back in August.

Unlike most people who experience a severe allergic reaction and then (assuming, hopefully, they were able to get the proper treatment in time) recover from that one episode, for me, that incident seems to have set off a chain reaction where my body is becoming more sensitive to triggers, over time.

It’s kind of similar to central sensitization, actually. Both our nervous system’s ability to send pain signals, and our immune system’s chemical messengers, are there to protect us.

However, in both cases, the two processes have gone overboard. In central sensitization, the nervous system becomes more “effective” at sensing pain.

And in what I have, mast cell activation syndrome, my body’s mast cells, which I need to release histamine during an allergic reaction, are not able to calm down afterwards.

I’m still learning about this condition — I went to see the specialist yesterday hoping to find out I didn’t have it.

But I do. The more I read about, and patient stories I hear, the more I know I do.

Essentially, my mast cells are still releasing high levels of histamine, even though the initial reaction that triggered them was over a month ago.

Having high levels of histamine can trigger a wide range of symptoms. The more minor are itchy skin and rashes. At the other end of the spectrum are all of the symptoms of a severe allergic reaction, including airway swelling and a dangerous drop in blood pressure (these life-threatening symptoms are part of an extreme reaction called anaphylaxis).

I now have an epipen which I expect I’ll have to carry with me everywhere for the rest of my life. I guess it’s similar to living with a food allergy — except, to my knowledge, I don’t have any food allergies.

MCAS is scary in it’s own right, though, because the triggers can be impossible to predict. The same thing can be fine one day, and trigger a reaction the next.

From the reading I’ve done so far, it seems like many sufferers have to keep a running tally of all the activities they perform, and foods they eat, which could cause a rise in histamine levels. It’s possible that although a food or activity on it’s own could be benign, if you add them together the body reacts.

That’s another thing. Intuitively, I had decided not to exercise at all since this happened. I’d learned, when I considered allergy shots last year, that exercise can trigger anaphylaxis.

The new allergist I saw yesterday confirmed that my hunch was correct, and asked me to continue not exercising for the time being (we’ll see what kind of effect this has on my SI joints!).

As devastated as I am to receive this diagnosis, at least the doctor yesterday validated much of my experience.

I had known, instinctively, that my body just needs to calm down right now. That I shouldn’t exercise, and that I need to avoid contact with my allergens.

I have certainly had emergency room staff be rude to me when they didn’t understand my symptoms.

I told my new allergist yesterday about some of the things people had said, and she rolled her eyes and said “That’s so stupid.”

So… I’m not happy to receive this diagnosis. But… the problem was already happening. At least now I know what it is. My allergist thinks MCAS is behind many of the extreme allergies I’ve had, even before this, and I think she is probably right.

So… it is life-threatening. The degree to which it will impact my life, on a day to day basis, is still unknown.

Anyone who knows my story knows I really, really didn’t need one more complex health issue to write about.

But I’ll do what I always do. Keep researching, keep writing, and keep moving forward.

I hope you are all doing well.

For more on MCAS:

https://www.healthline.com/health/mast-cell-activation-syndrome

https://tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/

https://www.mastcellaction.org/about-mcas

Be kind to yourself, meditate, and “eat the rainbow”– some straightforward advice from my new doctor :)

Hi everyone!

Wow… I have so many things to write about (yay!).  I’ve really been enjoying making connections with all of you, and seeing that my writing will resonate with people even if I write about topics I’m not sure anyone will care about.  (My last post about my how I don’t deal with heat well went semi-viral on Pinterest, of all places!  Unfortunately it got so many shares that the counter reset, and now it looks like it’s only been shared 3 times.  Argh).

Unfortunately, the reason I have so much to write about is partly because I have so many of my own health concerns to keep track of (not yay).

Some of you may know that, among the many issues I deal with, is extreme allergies to dust and mold.  You know, the main indoor allergens.

At times, these allergies have turned my life upside down.  I was never allergic to anything as a kid, but about 3 years ago something changed (I actually think it may have to do with a trauma that I went through at the time– more on that later, possibly) and I became super sensitive to both of these substances.

Since then it’s really been a battle to modify all of my living situations to reduce my exposure to these allergens.  Even following all of the rules I’ve learned from my allergy doctor, I still have to use medications, etc.  (I’ve actually started to chronicle the details on a separate allergy blog, although I’ve been so busy I haven’t updated it very much yet).

One piece of the puzzle is that, apparently, I have a deviated septum (aka the inside of the nose).

After I got freaked out by a potential allergic reaction to allergy shots, I sort of abandoned that as a potential route to dealing with this problem.

However, at the urging of my sister the nurse practitioner, I sought out an ear-nose-throat doctor who determined that the inside of my nose is actually too narrow, on both sides.

This never, ever affected me before I had allergies.  But now that my nasal passages are often somewhat inflamed due to irritation, the shape of my nose means there’s even less room for air to flow through.

So, my ENT determined that I’m a good candidate for surgery to widen my nasal passages.  I’ll still have allergies, but when the inside of my nose swells up, which it inevitably will, I won’t actually have as much trouble breathing.

But there is one problem.

She wants me to have a CT scan before the surgery, so she has clear images of the inside of my nose.

But, CT scans also come with significant risks, due to the radiation they expose you to.

I’ve been doing some research and, although it doesn’t appear to be possible to calculate the exact risks of CT scans, the estimate I’ve seen in most articles is that 1 CT scan increases the risk of a fatal cancer by 1 in 2000, compared to the risk of what it would be anyway, for the average population.

So, 1/2000 is equal to 0.005, or 0.05%.  I guess it’s not really that high.

But I totaled it all up and I believe I’ve actually had a total of 3 CT scans in my life, in addition to a few other procedures involving radiation such as x-ray.  So really, my elevated risk is actually around 0.15%.

Again, I guess that’s still not a terribly significant number.  

But it’s not nothing, either.  I’m not in a rush to add to it with yet another CT scan.  Because, again, we aren’t just talking about the risk of any cancer at all– we are talking about a fatal cancer.  So I would imagine the risk of developing a treatable cancer is much higher.

So what do you do in these situations?

Well, I went in and spoke with my awesome new primary care doctor yesterday, and the first thing you can do to minimize your risk is to always make sure you have the procedure with the least amount of radiation possible.

We agreed that the first thing I would do would be to get a second opinion from another ENT, to see if they also thought a CT scan was absolutely necessary prior to surgery.   Both she and I thought we’d heard of other patients with deviated septums getting treated with no CT scan.  So there’s a chance that it’s just this one ENT’s preference.

But my doctor also gave me some other great advice.

She just reminded me that, overall, there are many factors that go into our cancer risk, and actually– it was sort of a wake-up call that I’ve been a bit distracted from doing my self-care routine lately.

She asked me if I did all these things I mean to do, and know that I should be doing, but I don’t end up doing as often as I’d like.

So I’m writing this post as sort of a renewed promise to myself to do the following:

First of all, don’t dwell.

She reminded me that obsessing over the risks of the CT scans I’ve already had is, of course, not going to help.   She said it sounds as though all of the procedures I’ve had were necessary– I needed them for my health at the time.  It’s over, said and done, so don’t look back.

Stay hydrated.

Definitely working on this, constantly.

Meditate

People always ask me if I meditate and I say “yes!”  I’m well aware of the benefits of meditation and I do it… uh… not that often, if I really stop and think.  I don’t know why.  I enjoy it.  But sometimes I just get so caught up in moving at a fast pace that I forget to do anything that would require me to switch out of that mode.

Exercise regularly

I’m happy to say that’s the one thing on this list I really have down-pat.  Because I basically go crazy if I don’t exercise.  My body doesn’t let me forget for too long.  :)

Eat the rainbow

Radiation causes damage to cells, that releases substances called “free radicals.”  Our body has to repair this damage, and basically cancer can result down the line by any damage that isn’t repaired.

We can increase our body’s chances of repairing this damage by consuming a variety of fruits and vegetables which contain antioxidants– substances that can sort of tie up and neutralize these free radicals.

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Like everything else on the list, I know this.

But our conversation made me realize that I don’t necessarily do all of these things as consistently as I think I do.

I mean, it’s hard.  Life gets in the way.  Physical challenges get in the way– if you saw my last post on struggling with the heat, I was sort of dealing with being anxious and dizzy for the last few weeks.  (I have adequate air conditioning now!).

So in a way, this was actually a pretty good set of reminders for me.

When you’re dealing with multiple chronic issues and one acts up, it’s pretty hard not to lose track of the others as well.

But at the end of the day, everything is connected.  Allergies, breathing, stress, central sensitization, hydration, nutrition, relaxation… it all matters.

So that’s why I’m writing up this post, as a way of reminding myself not to lose sight of the big picture.

Honestly, sometimes I can’t believe I’m putting all these personal details online.  But at the end of the day, it’s my desire to make something out of my struggles that motivates me to just put it out there.

After all, it’s hard to go all through of this.  But if I can turn it into something good and help others, then in the end, maybe it was worth it.

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:

How to find help for Central Sensitization

Hi everyone!

I recently heard from a reader who was looking for some suggestions on where to turn next, in terms of finding a medical professional to help him.  He said he’d been struggling with central sensitization syndrome for three years now, and had yet to receive any significant help.

I thought his advice might be useful for many of you, so here’s what I said.

First, I recommended he watch this incredible video from Dr. Sletten of the Mayo Clinic, talking about the various causes and symptoms of CS.

Basically, this video is so awesome, I cried the first time I watched it.  Not, of course, because it was so awful, but because it made me feel validated in a way I truly wasn’t expecting.

In the video, Dr. Sletten explains how central sensitization impacts our body’s ability to process certain types of information.

In other words, it takes all of these normal, everyday bodily sensations that our nervous systems depend on in order for us to survive– and it turns the intensity WAY up.

On my blog, I have written about this the most in terms of pain.  You can feel a light touch on your skin, and have it be excruciatingly painful.  Your nervous system is magnifying the sensation.

But there are many other types of stimuli and sensations that our nervous systems can experience more intensely.  Noise, in my experience, can be a big one.  If someone’s making noise– say, doing construction on the building next door, it can really throw me off and ruin my entire day.   It’s like I just can’t block it out.

Heat, to me personally, is another one.  I’ve been thinking about that a LOT recently, as we’ve had a wave of 95 degree July weather here in Massachusetts.  It’s like… other people can sort of brush it off.  With me, it’s like it heats me up to my very core and I just can’t think clearly.  (Then I start to experience anxiety, which has been TONS of fun!).

So… back to our main topic.

This reader wanted to know if I had any suggestions for how he could look for help.  (He didn’t give me any specifics about his symptoms, or what exactly he’d already tried).  So here is my answer, written for a general audience.

It would be really great if you could find help in one place.

For example, the video from above is from the Mayo Clinic’s Pain Rehabilitation Center in Florida.  This type of a program, ideally, is geared towards helping people with complex pain problems.

If you have the option of attending such a program, I certainly recommend it!  However, this type of program is few and far between, and I’ll be honest with you– I think a lot of other pain clinics have a ways to go, despite how good they look on paper.  (You can read about my disappointing experience at a pain clinic here in Boston a few years ago).

So, while I certainly don’t want to discourage anyone from seeking out help where appropriate, I want this post to provide additional options for people for whom that isn’t an option (or it didn’t work).

What I personally did to manage my symptoms was to work with the appropriate specialist to address each set of symptoms I was experiencing.  Here are some examples, for symptoms that are common in people with CS:

Musculoskeletal Pain

The person who helped me the most with my chronic pain was actually a PT.  He truly changed my life.  He had advanced training in something called pain neurophysiology education, which taught me to view my pain as something that was there to protect me.

As a result, I learned to work with my nervous system, not against it.  I developed a much better sense for when it was okay to push through the pain, and when I really had no choice but to sit and rest.  PNE can’t take away all your pain, but it can help you learn how to work around it (which dramatically reduces the cycle of having setbacks).

There’s also a type of specialist called a physiatrist who specializes in musculoskeletal pain.  Physiatrists work in the specialty Physical Medicine and Rehabilitation.  Basically, they specialize in all of the ways to treat musculoskeletal pain, and they are trained to look at the whole person, rather than focusing in on one body part.

A physiatrist may ask you about your daily life, and how your sleep is.  They may offer you medications such as Lyrica or Cymbalta (see below).  They may also offer different types of injections, such as trigger point injections, to help with muscle tightness.  In general, they can help you think of solutions you may not have thought of.

Other, non-musculoskeletal symptoms

There are definitely other symptoms and conditions that can be caused by central sensitization.  Again, let’s remember that with CS, you’re taking what would have been a normal, helpful bodily sensation and making it extremely intense.

Digestive System

One type of sensation that can be intensified is in your digestive system– what’s commonly known as irritable bowel syndrome.

If you’re having these symptoms, it’s really important that you follow up with a gastroenterologist, to make sure there isn’t anything else going on that could be causing your symptoms.

It may be easy, for example, for your primary care doctor to tell you that it’s stress, or that it’s irritable bowel syndrome, but really, you want to talk to an expert, to make sure it isn’t anything else.

If your GI doctor doesn’t find anything else going on, then it’s time to look into solutions.  There are a wide range of treatment options out there for IBS– there are medications you can take, and you can work with a nutritionist to eliminate dietary triggers.  Stress, of course, is a bigger trigger and it’s important to learn how it affects you.  But keep in mind that it is not the only factor, which is why you should investigate all of your options.

Bladder

Another sensation that can be intensified is the sensation that your bladder is full.  This is one of the potential causes of a condition called interstitial cystitis, which many people with CS/fibromyalgia have.

However, there are other potential causes as well– an issue with the lining of the bladder, or a possible bacterial infection.

So again, it’s important to consult with a specialist (in this case, a urologist) to make sure you aren’t missing something bigger.

Headaches/Fatigue/Dizziness

These are also some common symptoms of CS/fibromyalgia.  However, like everything else, it’s really important to make sure that’s all it is, and there isn’t anything wonky going on in your nervous system.

Your primary doctor, of course, will be the one to direct you where to go in all of these cases, but just to give you an idea, these symptoms would probably be good to check out with a neurologist.

What you will likely find is that all of these specialties will be familiar with CS, as it relates to their own system of the body.

Each specialist may use slightly different terminology, or explain it to you in a different way.  A physiatrist will be talking to about pain.  A gastroenterologist will be talking to you about different types of sensations, as will a neurologist.

But ultimately, these are all different ways of looking at the same thing– the fact that your nervous system is processing information differently than it used to.

So… it isn’t really possible to get help for all of your symptoms from one person.  Because you need to get the information from a specialist.  

There is no one specialist you can see who’d be able to rule out other potential problems in your joints, in your digestive system, in your bladder, etc.  You have to go to someone with specialized knowledge, for each of these different types of symptoms.

So, in the end, I think the most important thing is that you have a supportive and thorough primary care doctor.

You will need this person on board to direct your care, write referrals, etc.

I have recently had an epiphany that there are probably better primary care doctors out there than the one I was seeing.

The woman who was my doctor for over 10 years didn’t really believe fibromyalgia was a real condition, so needless to say, she didn’t treat me for it.

Fortunately, that never stopped me from seeing all the specialists I needed to.  It’s not like my doctor was going to say no, and refuse to write me a referral if I said I was having a problem.

However, I am currently in the process of seeking out a new doctor, because our knowledge base is changing all the time.  And because, of course, I’d prefer to have a doctor who actually believes me!

But I know what it’s like to struggle for answers, and not know where to go for help.  

I wrote this post for you, if you’re in the same boat.   Hopefully I’ve given you a good idea of how you can work within the framework of the health care system to get help.

For more ideas, you can check out the following post.  It’s actually an old post, but I just went back and re-worked it before I answered this reader.  It has a little more detail on various treatments:

Don’t worry!  You can still get help, even if you can’t find a doctor who treats fibromyalgia!

Okay… that’s all I have to say for now!

Wow… this was a lengthy one!

As always, if you have any questions, you can leave a comment below or email me at sunlightinwinter12@gmail.com.

Thanks!

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:

Friday round-up: swimming outside, meditation, and coffee shops

Hi everyone!

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. 

Rash guard

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:

Aqua Jogger Women’s Fitness System

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.

Meditation.

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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.

Group meditations

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!

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).

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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.

Grateful to be okay

Well, if there’s anything I can say I learned last week week (in addition to chiropractors are dangerous), it’s this:

How very, very grateful I am not to have a permanent nerve injury.

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I guess that’s sort of the obvious thing for anyone to say in this situation.  But what really surprised me was that my biggest fear was not how difficult daily life was going to be if my nerve issues turned out to be permanent.

Instead, what scared me the most was that I might have to give up my chosen career– or, at least, not be able to do it in the way that I want.

It was sort of a reminder for me, in a way, of how much I really want to become a physical therapist.  Because in my daily life, I often get bogged down in the practicalities.  The few remaining prerequisites I would need to take in order to apply to certain programs.  Taking the GRE (again, that is– let’s not talk about how I scored the first time!).

Last Friday, I consulted a neurologist, and was very encouraged by what she said.  On the way home, I stopped in the town of Newburyport, Mass., which is always one of my favorite places to go in the summer.

I could feel my body telling me it was okay to move, that it was okay to start using my legs again.  So I walked around and took in the sunset, gathering my thoughts.

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And I was just sort of thinking of everything I’ve been working on so far– my classes, my blog, my Youtube channel (I have so many ideas for videos I mean to make!).

And of course, the e-book I’ve been working on– Exercises for the Sacroiliac Joint.  It will be quite a bit easier to get back into concentrating on that, now that the question of whether I’ll be partially paralyzed for the rest of my life has been taken off the table.

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As I have said before, I don’t necessarily think everything happens for a reason.  But as my friend Nicole told me once, “You can make meaning out of things for yourself.”

So there a few lessons I can draw from what happened:

1) I need to explore alternatives to chiropractic adjustments.  Who knows where this will take me?  Maybe I’ll discover something even better, something that will benefit my future patients and make me a better PT.

2) I have such a better understanding now of what it feels like to have nerve damage.  Before, it was something I only could imagine.  Now I have felt it– thankfully, only for about a week.

And 3) What a reminder of how much I really do want to do this.  I want to teach people, I want to educate (and thank God I’ll still be able to use my own body as a tool to do so with).

Sometimes I feel myself get slowed down by the demands of daily life, and the things I have to do just to get into school.   So in a way, it was quite the wake-up call to get in touch with the fear I had, at the thought it could be taken away.

So now, I am grateful to be okay, and it is back to business.

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