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.

Pain is like Memory: Dr. Jay Joshi on Central Sensitization

Okay.  I’ve really been looking forward to publishing this post.

Here, we’re revisiting the same great talk by pain physician Dr. Jay Joshi.  In my last post, I outlined what Dr. Joshi says are the four main categories of pain.

Central sensitization is the type that is, unfortunately, the least understood.  And it’s also the type that’s had the biggest impact on my life to date.

What is it?

Central sensitization is a process through which the central nervous system learns to become more sensitive to, or amplify, pain signals.

I struggled with it for years and thought I was crazy, because I had pain that came and went throughout my own body that most of the doctors and physical therapists I saw couldn’t explain.

Central sensitization is a form of memory.

Generally, we think of central sensitization as a sort of a disorder, because of course, it causes so much pain and suffering.

However, as I’ve touched upon in previous posts, central sensitization actually has its roots in some of the same neural mechanisms that allow us to learn new things and store memories.  We “learn” from pain just as we learn from anything else, and our nervous systems can be changed by it.

As Dr. Joshi says:

“Central sensitization is what happens when the brain is exposed to certain experiences or certain memories.  It’s life… it’s being a human.

When you have a certain memory that forms it, becomes part of who you are… it becomes part of your experience.  And your behavior changes as a result of that.

This is not something that happens randomly…  This is something that happens to the neurophysiology of your brain.  It forms memories.  Those circuits get hardwired on your little ‘hard drive’ that’s known as a brain.  The same thing that happens with pain, when you have a chronic pain stimulus.”

The process of central sensitization is not separate from our brain’s other functions– rather, it belongs to them.

I found this happened to me so often, over the years, before I even knew what central sensitization was.

I’d have a painful experience– the first one was when I threw my back out at age 21— and it was like my nervous system was determined not to let me forget about it afterwards.

According to Dr. Joshi, this is exactly how central sensitization occurs, after a painful or traumatic event:

“You have a painful experience, and usually one of the first things that happens is your brain says ‘hey don’t do that again.'”

It’s trying to protect you from doing the same thing that might have caused you to become injured in the first place.

But what happens when that signal doesn’t stop? 

In cases like mine, this process can go on indefinitely.  Your brain keeps trying to protect you, telling you not to repeat certain activities, long past what’s actually necessary or conducive to your well-being.

This is called the wind-up phenomenon— when the brain’s protective mode stays on, and never gets the signal to turn “off” like it should.  Instead, it just keeps repeating the message of “don’t do that again”– even if it’s something that, technically, should be safe for you to do.

Once this process, the pain can sort of build on itself, like a snowball effect.  And you can remain in pain, long after the original injury that might have set all this off as healed.

Does all chronic pain cause central sensitization?

Dr. Joshi explains that chronic pain is likely to lead to some degree of central sensitization.  (This is significantly higher than other estimates I’ve heard, such as Dr. Elliot Krane’s figure of 10%).

However, I think Dr. Joshi’s explanation makes a lot of sense.  After all, when you experience chronic pain, you’re basically bombarding your nervous system with opportunities to practice sending pain signals.  Why wouldn’t it get better at doing so, the same way you can get better at playing the piano or riding a bike?

Central sensitization is still a part of my life.

I don’t expect to ever be able to totally reverse the process that first began, for me, at age 21.

However, I was able to make a lot of positive changes and gain back a lot of control over my body through pain neurophysiology education, which I write about a lot on this blog.  (Basically, it involves teaching your nervous system what it’s like to feel safe again, so that it can turn the “volume” back down on the pain).

There’s a lot more to say!

Dr. Joshi has some great thoughts on how to improve the medical profession’s understanding of central sensitization, as well as ketamine infusions– a potentially powerful treatment for patients with central sensitization.

I’ll be sharing more on this coming up– hope you liked this post!

Newfound possibility

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I’ve been away from my blog for the past month, and I have so much to tell you all. I took what was supposed to be a five-day trip to a wedding in California, and turned it into an amazing, impromptu two and a half week stay.

To be honest, I was really scared to take this trip. Since I first developed health issues at age 19, I have really not traveled very much at all. It’s only been in the past four years or so that I’ve started to open myself back up to small weekend trips around New England.

But California? I had to go… one of my oldest friends was getting married.

So I went. But I really didn’t want to.

I hadn’t traveled in so long that everything felt rusty. I’d clung to the same routine for so long, hoping my pain and SI joint issues wouldn’t get worse… and now, everything was about to change.

Now that I look back, I can’t believe I was so scared of a five-day trip. It’s not like I was traveling to the middle of nowhere. I was going to Napa Valley and San Francisco… two places that are hardly without amenities. I had just gotten so used to the idea that travel was not for me, that I felt as though I was traveling to a foreign country.

So I went.. and everything turned out fine. Better than fine. The wedding was in Napa, and then after that I spent two nights at my friend Karen’s apartment in San Francisco. We were having such an amazing time catching up, Karen finally getting to show me the sights and sounds of the city she’d been telling me about for ten years. After one day, we decided I should switch my plan ticket and stay. It’s something that felt so out of character for me… but I did it.

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It ended up being a great adventure, and in some ways… I feel as though I re-joined the modern world. (It feels weird to tell you all this, but it’s the truth). My health issues had forced me to stay still in one place for so long, that it seemed so much had passed me by.

Now, it was time for bootcamp. I had to remember how to book a plane ticket; how to check a bag and get through security. How to handle a rental car. I got an AirBnb account; I got Uber; I got Lyft. I had to navigate us all throughout Napa Valley for the various wedding events, and then back down to San Francisco.

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I had to put so many of my fears aside, because there simply wasn’t time for them. And I realized that (apart from the extreme amounts of money I spent on the trip) most of my fears turned out to be unfounded.

To be fair, I had some amazing friends to help me. My friend Karen is amazing, and so is my friend Amanda, who flew with me from Boston to be my plus one at the wedding. Part of the reason I asked Amanda to come – other than, of course, wanting her company– is that I was afraid I would need a lot of help physically, dealing with my suitcase and stuff like that.

But it was all okay, and if anything, I realized I really didn’t need Amanda’s help as much as I thought. Now, I actually think I could have made the trip alone (although I obviously still would have wanted to have Amanda come for the company!).

The lesson I’m taking away from this is that sometimes, change can be good. A new experience, particularly one that we fear, can be a great way for us to open ourselves to new possibilities, and to learn things we didn’t even know we didn’t know.

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Now, I’m not suggesting that things are always going to be easy, or that all those of us with health problems have to do is wave our magic wand, think positive, and hop on a plane, guaranteed a great trip.

There’s a lot that has gone into getting me to this point. Learning the right exercises to strengthen my body, and learning the right techniques to help calm my nervous system. My life is opening back up again, but it’s only been because of the time I’ve spent being mindful of how I live, and carry myself, and remembering to work with my body instead of against it.

This is why I feel so powerfully about some of the things I share on my blog– when you have chronic pain or fibromyalgia, it is possible for things to change.

I’m so glad I took this trip, and am so excited to see where my newfound sense of possibility takes me. I hope you will all stay tuned!

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Little things

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These days,  I’m all about the little things.

Last Sunday, I went with my friend Romina to her father’s house in Rhode Island.  I would say that we were going to visit, but we were actually short on time, and Romina just needed to drop some things off.

But we ended up having a great time.  I had never gotten to know Rhode Island that well, and didn’t realize how beautiful it was, with all of its waterways and estuaries.  We drove through Providence and the surrounding towns, and I soaked in the beauty of all we passed.

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As I mentioned in my last post, travel wasn’t really a huge part of my life for the past 10+ years.  Since I developed compartment syndrome at 17, there always seemed to be one reason or another why I couldn’t be on my feet for long periods of time.  And what’s the point of travel, if you can’t walk around?  Better to wait and save my money until I could really enjoy it (or so I thought).

However, as I entered my late 20’s, my thinking started to change.  I realized that the perfect day when I’d be able to walk as much as I wanted might never come.  Why was I missing out on things, waiting for everything to be perfect, instead of enjoying what was possible right now?

I know this is going to sound like such a cliche, but it’s cliche for a good reason: I started to focus less on what I couldn’t do, and more on what I could do.

I can’t go on a six-hour walking tour through the rolling hills of San Francisco right now.  But I can tag along with Romina, on what would otherwise be a routine errand for her, and turn it into a really fun afternoon.

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I read an article a few years ago which really had an effect on me.  It was actually an article on how to be good to the environment and minimize your carbon footprint.  It pointed out something that of course is going to sound so obvious now:

If you have one errand to run, try to think of other things you can do on that same route.  Don’t make separate trips and go back and forth, when, with a little bit of planning, you can just make the first trip slightly longer and get more done. 

I know, this sounds so obvious– you probably didn’t need me to tell you.

But for me, as someone who really cares about the environment, it really got me thinking about what else is around me as I go about my daily life.  I started to study Google maps before every trip, wondering what cool scenic thing I might be driving by.   If I have the time– even a few extra minutes– why not try to see something cool?

I started out doing this for environmental reasons (not to mention to save money on gas) but over time, I came to realize that my whole perspective had changed.  Somehow, by getting in the habit of trying to make the most out of every trip, I had started to become more conscious of the unexpected little things around me.

Downtown Providence from Point Street bridge

I mean, this is how we are when we’re on on vacation, right?  We try to see everything; to soak it in.  Everything is new.

But what I have learned, in my study of maps, is that we can have more of a vacation-mindset in our every day life.  It’s a matter of perspective.

You have to take the time to look, consciously.  No one is going to take you by the hand and force you to see the beauty in the world.  You have to remind yourself to keep your eyes open.

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I don’t mean to sound as though I am against travel– not at all.

I just know that before my health problems, I used to think about travel the way I think most people probably do: what is my preferred destination?  What do I want to see more than anything else, and how can I maximize my enjoyment of that destination?

But that way of thinking– let’s call it the “enjoyment-maximization mindset”– is what made it so devastating to me when I couldn’t walk, and made me not want to travel until things could be perfect.

Now, I am in more of what I would call an “appreciation mindset,” where I consciously remind myself to look up and see what is around me.  This is another cliche, but it’s honestly not about the end destination: it’s about the journey.

Just because I’m driving to a doctor’s office down an unsightly highway full of strip malls does not mean that, two miles off the main road, there won’t be a gorgeous scenic overlook or historical park.

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Even if you can’t travel far, or see things on foot, you can still discover new things all the time.  But it does take a conscious effort to break out of old ways of thinking, and decide what matters to you, even if your adventures are not in the same form other people’s would take.

Now, I say yes to so many invitations I would have turned down in the past.  These days, when my friends go camping, I actually go too.  (Car-camping, of course–backpacking would still be too much of a stretch).

In the past, I never would have said yes to camping.  What would be the point?  I would have thought.  I can’t actually go hiking with them during the daytime, so why would I want to go and be by myself all day?

But that was my old way of viewing things: of waiting until I could experience things the same way everyone else does.

Now I go, and I do as much with the group as I can.  We generally go to the White Mountains in New Hampshire, and what I never realized until I got there is that even the car ride can be fun, because it’s so beautiful.  There are things to stop and see all up and down the major roads.

Now, when my friends leave in the morning to go hiking at whatever mountain they’ve chosen that day,  I drop them off, and then go sightseeing for a few hours until it’s time to pick them up again.

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Of course, this plan wouldn’t work without the right people.  I’m really loading this post up with cliches, but hey– it’s not just what you do; it’s who you’re with.  Anything can be fun with the right person.

I am grateful to the people I’ve found in my own life, who are able to appreciate the little things with me.  To friends who give me their car for the day so I’m not stuck at the campground.  To a friend like Romina, who can make a tour of her hometown so much fun.  (And of course, to her father and his wife, who sent us home with about 30 pounds of food Sunday night).

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Peruvian-American fusion.

It’s all about figuring out what matters to you, and makes you happy.   And remembering to seek it out, even if it’s in a different form than what you once would have expected.

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Photos of Providence:

Lessons from an amazing weekend

I had a crazy, fun-filled weekend. The kind of weekend I haven’t had in at least five years. 4634683686_d575b661b5_o

Five years ago, my friends and I went to a “tango night” at a local restaurant.  It was an amazing evening.  The teachers were professional dancers, and a lot of the other students were from other countries.  There was such a fun, friendly, open vibe to the night.

The evening started out with a free tango lesson, and then afterwards, the dance floor opened up to anyone who wanted to come and dance.  Some truly amazing dancers showed up.  I was in my element, starting to picture myself traveling through Argentina.

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But as the night went, on my knees started to hurt. At first, I tried to ignore the pain, but it got worse and worse until eventually, I had to sit down and watch everyone else for the last two hours.

“We’ll go back,” my friends and I all said at the end of the night. I thought I’d fix my knee problems, and organize another group outing in a few months.

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Of course, it never ended up happening.  People got busy; the friend who organized it the first time moved away.

And I ended up spending the next five years having trouble walking.  My knee problems got a lot worse before they got better, and the months I spent limping and carrying my weight unevenly led me to develop the SI joint issues I still have today.  Basically, it’s been five years since I could stand, or walk, or dance without so much as a thought.

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Yet somehow, this weekend, everything clicked. I didn’t plan it– I just got caught up in the flow of things, and went where my friends went.

I guess all my strengthening exercises are starting to really pay off, because somehow, I went out dancing Friday and Saturday night. Friday night, I was in one of those loud, crowded bars I normally hate, but the band was actually amazing, and I found myself out on the dance floor with the group.

And then Saturday? Well, it wasn’t tango, but some friends went to a salsa night. I didn’t make it in time for the lesson, but I did make it out onto the dance floor afterwards. I wouldn’t say I wowed anyone with my salsa skills, but I also didn’t need to sit down once the entire night.

But here’s what really shocked me: I was back to where, physically, I had left off five years ago. But nothing about it felt monumental or life-changing.

What was life-changing? Everything it took for me to be okay, in the past five years, when I couldn’t have a weekend like this. All of the restraint it took; all of the patience I was forced to cultivate.

Don’t get me wrong– I haven’t stayed at home for five years, I’ve gone out– but it was never without compromise, never without having to constantly be aware of the nearest chair.

I’ve had to make peace with the fact that I’d be sitting by myself when an amazing song came on and everyone else wanted to be on the dance floor. I’ve had to perfect the art of looking calm, confident, and busy doing things on my cell phone.

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I’ve been through so much pain, frustration, and effort with my SI joint, I can’t even tell you. As much time as I’ve spent actually exercising, I’ve spent about three times as much time trying to learn about the problem. Researching the joint, consulting different doctors, chiropractors, and PT’s. Learning what movements not to do, which has been just as important as finding the right exercises.

That’s the thing– and I think anyone with chronic pain and health issues knows this– mind over matter doesn’t work. And actually, it’s counterproductive to push yourself into doing something that isn’t good for you.

You have to listen to your body: fine-tune your balancing act of when to push and when to rest. You have to become still.

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Something that’s helped me immeasurably is learning how to meditate. I actually don’t meditate every day, but learning how to be in the moment in that way has really spilled over into my daily life.

For me, meditation is like an experiment. You take everything that’s bothering you– whether it’s physical pain, or emotional, or stress and anxiety– and you just tell yourself, “Yes, this is all happening… but what if I was okay, anyway?” The problems are all still there, but just for a few minutes, you stop trying to fight them. They exist, but you see that underneath it all, you actually are okay.

Even after I’d only had this experience a few times, I felt as though it began to change the way I saw the world. I just felt calmer; more at peace. Somehow, it started to feel easier for me to notice the good in the world.

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There are different ways to grow as a person. You can go on a journey through the world– you can travel, meet people, and see fascinating things.

But you can also journey inside of yourself, and that can transform your perspective just as much.

I have had to learn how to find peace in the moment. I haven’t had the option of going out and losing myself in the way people describe when they talk about travel. I’ve never backpacked through Europe… I’ve never even backpacked through the White Mountains, like just about everyone else I know.

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But I have been transformed, no doubt.

It’s tempting for me to try to compare myself to other people, to suggest that maybe I have actually learned more by being forced to stay still, compared to people who have been able to leave their problems behind by going out and doing things. But that would be wrong– I don’t know what journeys people are on, or what they are learning.

But I can compare myself to my past self, and say that the things it takes to make me happy now are very different than the things I used to think I needed to be happy.

That night that I was forced to sit down at Tango Night, I thought I was losing a piece of myself that I wouldn’t get back until I could come back and dance again.

Now I see that I didn’t lose anything at all.  In fact, I gained something.

And that is a lesson I’m grateful to have learned.

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Credits for the photos in this post:

 

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