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.

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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When the going gets tough, the tough start researching…

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Hi everyone!

Today I wanted to share with you this post from my friend Clare over at Jelly-Like Joints.

Clare is a science-lover and “bookish crafter” –a book lover who also enjoys arts and crafts.   She was born with a genetic condition that affects her connective tissues.   This causes her to have hypermobile joints, along with chronic pain and other symptoms.

In her post, Clare writes about how she’s been struggling with some new symptoms lately, specifically in regards to her voice.  (Connective tissue disorders can cause a wide range of symptoms, because connective tissue can be found just about everywhere in your body).

I wanted to share her post with you because I really admired her mindset– it’s the approach I try to take as well, when I have setbacks.

Which is to take a step back and say, ok.  I have this new problem I wasn’t expecting.  But that also means there are new potential solutions out there I haven’t tried.

Of course, this is easier said than done.  And I admit, it is not always my immediate reaction.  But when I work through the anger and frustration, this is usually the point I get to that feels right, that lets me know I’m on the right path.

Keep going.  Don’t stop looking for answers.

So what I really admired about Clare’s post is how, not only is she mentioning things that could be helpful to her, she keeps trying to help others at the same time.

So… check out her post!

You may notice that she’s included a link to one of my blog posts ;) I also struggle with hypermobile joints, however mine are hypermobile for a different reason.  I am very fortunate not to have a connective tissue disorder…  I was just born with joints that don’t fit together in the most stable way, making them more prone to pain and potential injury.  (It just happens to some people, through luck of the genetic lottery).

I also really thought the part about the acupressure mat was interesting.  For those that don’t know, the term proprioception means a general awareness of where your body is in space, and the different stimuli affecting it.  Our sense of balance, for example, depends on different types of proprioceptive input through our nervous system.

Sometimes when we have a chronic illness, or injury, or chronic pain, our sense of proprioception to different parts of our body can be impeded, so an important part of therapy is to help the nervous system “remember” to check for different types of information.

That is something the acupressure mat could do, by giving TONS of information to our nervous system about what’s going on with your feet!  So I thought that was cool.

Anyway, I hope you’re doing well, and that you all head on over to check out Jelly-Like Joints!

The thing I was most embarrassed to write about

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Technically, I suppose it’s bad form to brag about how much traffic you’ve been getting on your blog.

However, I feel like it’s a little different when a positive message comes with the bragging, so I wanted to share some of my updates with you all.

I’ve come so far from where I was when I wrote my first post about the sacroiliac joint. Despite everything I’d already been through with central sensitization and learning to believe in myself, I still had trouble taking myself seriously when it came to the SI joints.

I mean, I remember why I thought that way, when none of the doctors or physical therapists I saw seemed to know what I was talking about.

But now I know from running my blogs, and hearing from all of the readers who’ve shared their stories with me, that I was far from alone.  I’ve been hearing from so many different people, and I think it’s safe to say that just about everyone who struggles with SI joint dysfunction feels this same way at first.

So, a big thank you to everyone who’s shared their story with me.  Technically, you’ve been reaching out to me for help, but in the end, I think I’ve benefited as much as you.  It’s meant so much to me to know that I was never alone, either, and that the topic I was so afraid to write about is now the topic that’s getting me the most views.

In that spirit, I wanted to share my traffic stats from February with you. My traffic over on My Sacroiliac Joint Saga has been increasing each month, and in February it hit an all-time high, of over 15,000 views.

 

While I wish Sunlight in Winter got anywhere near this much traffic, it just goes to show how many people there are out there looking for information on SI joint dysfunction.

I wish I could show you all of the meaningful emails I’ve gotten, but since I keep all my messages confidential, these numbers will have to do.

But to me, sharing these numbers with you isn’t about bragging– it’s about proof that good can come from sharing the parts of your story you think no one will want to hear.

My very first interview: The Capable Body Podcast!

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Hi everyone!

One of my goals for 2017, and continuing on into 2018, was to say “yes” to any opportunities that came my way to grow my blog.  So, when my friend Matt Villegas asked to interview me for The Capable Body Podcast, I said yes!

In this interview, I tell the story of how my eating disorder and overexercise led me to develop the injury that ended my running career (compartment syndrome) and to develop chronic pain.

I talk about how the nervous system can change in response to pain, and how this occurred within my body.  I also talk about the difficulties I faced in being taken seriously by doctors, PT’s, and other medical professionals, and how for a long time, my pain was misdiagnosed as a mental health condition.

And I explain much my life changed when I met a physical therapist who had studied pain neurophysiology education with Neil Pearson— what I learned from that time, and how it drives me to become the best physical therapist I can be now.

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To be honest, it was a little bit scary trying to tell some of the most personal aspects of my story live in audio form.  After all, I’ve really only just barely gotten up the courage to write about some of this stuff, and even so, when I write about it I don’t always come right out and say the whole truth.

But I promised myself I was going to try new things, and I’m so glad I did it!

So here are a few links to the podcast– you can check it out in whatever format works best for you.

I’m reminding myself not to let perfect become the enemy of good.  

I still do wish my voice, and explanations, were a little more polished.  But, like many aspects of blogging, I find that doing something for the very first time is the hardest, and the next time will always be easier.  That’s why I went ahead with this, and why (gulp) I’m going to start sharing it with the people in my life!

If you want to check out more episodes of The Capable Body Podcast, you can visit its official website, or also join Matt’s Facebook group (it’s a closed group because it’s easier for Matt to manage that way, but anyone is welcome to join!).

Okay, that’s all for now!  Hope you enjoy the podcast!