Healing My Body after 3 Babies x Is This Ankylosing Spondylitis?

A long blog title to be sure, but one that attempts to sum up what has been a rather complex mat leave.

During my third maternity leave (this past year,) I committed to myself that I would finally address a host of issues in my body and heal it. I set out my intention that this third maternity leave would be about healing.

To decide to heal yourself isn’t about going to the doctor, getting a prescription or doing physio.  Healing is much, much deeper and complex than that. The first and most important part of healing is carving out the time, space and commitment to do it.  It’s way too easy to ignore and continue on in the daily busyness of post-partum life.  Plus, after all of those blood tests and doctor’s appointments, and of course, delivering a baby, frankly, you’re kind of done with the medical stuff for a bit. 

This post today explores some of the facets of healing I’ve experienced, but also takes you on a bit of a journey.  How we can build awareness and piece together puzzle pieces over the years, and with hindsight and perhaps diagnosis, it can all make sense, and will all make sense for you if you commit to understanding and exploring it.

Some of this journey has been straight forward.  I came out of birth #3 with diastasis recti and multiple pelvic organ prolapse, which I got right to work on with pessaries and pelvic floor physio, clinical pilates and core rebuilding.  These have worked.   Where things have been more difficult is the system stuff.  Particularly, the immune system.

 

This blog post tonight is a bit of a longer one.  As I often mention, the goal of starting this blog was to share my story – not even to an intended audience – but to put my life experiences into the written word.   If people happen to stop by, appreciate the article and stay around for its duration, I thank you, but I also understand if you do not have the time or interest.  If you are sticking around, I am glad this article found you. The web is funny like that.  When the student is ready, the teacher appears. 

The Undergrad Years:

In my 20s as an active, happy and engaged undergraduate student at University, I began to experience sciatic pain radiating down my leg.  At the same time, I suffered from IBS in the form of chronic constipation and what I can only describe as back-of-the digestive area cramps around my back.  Multiple times I wound up at the doctor’s office (or ERs in foreign countries!)  and had to resort to different pharmaceutical methods to “get things moving.” You know what’s normal for me?  Pebble poops and only going once every week or so.  That’s my normal!  From my 20s onward I have never known what a daily poop is like! And I didn’t know what I experienced was not normal, because as I found out in momhood, you really don’t talk about poo comfortably and openly until you’re a Mom.   This is a topic I’m a bit passionate about now. Poo is such a good barometer of your overall health and we should be able to talk about it.  Just like pelvic health. It’s not secret.  Everyone has pelvic organs and everyone will need to talk about them.  Shit, ESPECIALLY if you’ve had three babies.

Anyways, I digress.

At the time, I felt too embarrassed to see the doctor for other issues I was having,  I knew they’d wave it off as silly stressed out high performing undergrad student.  Some of the issues included severe heart burn and this crazy sternum / chest pain that seemed to come and go at random times.  Chest X-Rays never revealed anything but the pain was intense enough that I struggled to breathe deeply.  I constantly felt like someone had hit me with a baseball bat, smack in the middle of the chest.  Because the X-rays showed nothing, I chalked it up to just… the body being weird or it must be all in my head.  Headaches were constant as well.

As undergraduate studies progressed, the sciatica became more severe.  It became even more difficult to deal with, to the point where I had to lie on the floor to study for finals and stood at the back of the lecture hall. I dreaded those plastic chairs and was pretty messed up after 3 hour final exams.

Lumbar spine examinations revealed nothing, and so I began to work hard at corrective exercise and physio to address the piriformis muscle and what I assumed were muscular imbalances.  At that point, my low back was beginning to ache badly enough that I scaled back on running and yoga.  I learnt about anatomy and participated in research studies for non-specific low back pain. I thought I was doing everything right like a good, scientifically-minded citizen.

Everything seemed to come and go, in month-long cycles. Spurred on by this pain, I developed an interest in diet and learnt a ton about nutrition.  I lost weight, began to take fish oils, cleaned up my diet but also began relying on NSAIDs.  Then, I began to eat tums like candy at night time, to counteract the heart burn from the NSAIDS.

Graduate School and Enter the Thoracic Spine

Life stress built up at the end of undergraduate years and amped up as I entered  graduate school and tried to figure out my career path. I entered a tough time mentally.  At that time I was also rear-ended in a car accident.  I entered a new phase of back pain:  Thoracic pain. I became bolted down in a fog of painkillers for 3 years and writing my thesis became next to impossible between searing back pain, whiplash pain and the sciatica that blew up any time I sat.

Two years after the accident, when I had made no progress with pain despite physio, soft tissue treatments and manual therapy, I got an MRI.  Imaging revealed a herniation and multiple spots of degeneration in my thoracic spine, concentrated between t7 and t12.  I, as well as everyone around me, assumed my pain was a result of the accident.  I entered another few years of physiotherapy, trying to exercise the pain out of my body.  Again, physio made no difference.  I was determined to beat it out of me, and to prove that I was the master of my own body.  Cue phase of CrossFit and an “all-or-nothing / pain is weakness leaving the body” mindset. Well, that didn’t work either.

Because I was focused on the injury, I simply decided to ignore the sciatica.  It was hard to ignore.  Finishing my masters and starting full-time work combined with the sheer difficulty of sitting at a desk really ground me down.  I began to rely on exercise as the one break I got, when endorphins crowded out the pain and stress.

Things just weren’t getting better. They were getting worse. I attended pain clinics, saw specialists and was lumped into the chronic pain category.  In my mind this entire time, I kept thinking that a life of pain was unacceptable, there had to be a solution to all of this, and it didn’t seem to be exercise or advil.  What else was there?!

Left at a loss, my life took on a new trajectory.  From 2012-2017 my body worked hard, building and birthing three beautiful healthy babies.  It was a time of putting my own rehabilitation goals aside.  In between each pregnancy though, warning signals were going off and I seemed to go through full system flare-ups.

I’d go from a daily average of 5/10 pain up to 8/10 pain, constantly up and down, up and down, but the overall average pain level was increasing. So was my stiffness.  Systemic issues seemed to be happening too.  By that I mean constipation, back pain, strange bowel cramps, my ears started ringing.  So many random things.  I began to suffer from trigger finger in my writing hand and a host of other inflammatory issues.  The list of things bothering me became so long that I was embarrassed to mention them at my doctor’s appointment, and I didn’t, even the swollen lymph node on my neck I mentioned quickly in passing, because I didn’t want to be judged and I definitely didnt want my doctor to think I wasn’t working hard at all of the lifestyle stuff.

My si joints became so painful that it was hard to stay standing or lie on my back on the ground, which was my usual form of relief when my back pain kicked up. During the worst flare ups, it felt like knives were stuck in my si joints and I didn’t want to be touched – even my skin felt sensitive, and my husband had to help me in and out of the car.

I was beginning to genuinely dread any car ride or plane ride over an hour. I avoid road trips like the plague and I still have a funny relationship with seats.  I walk into a conference room and feel dread if I see those standard plastic stackable chairs.  That’s a week of suffering for me.

Again, I worked on problem solving.  I worked with an occupational therapist to get a stand desk, had everything set up ergonomically correctly, and worked out at lunchtimes.   I couldn’t sit, but then I also found it incredibly painful to stay standing. I used to have my evening go-tos for relief like a hot water bottle and NSAIDs, but nothing was working like it used to.

Around 2016 my mornings were getting more difficult.  I began moving like a 75 year old in the mornings, and nothing seemed to be giving me any relief. I noticed how gingerly I was moving.  It would slowly get better once I moved around in the morning, but then get worse as I sat at a desk, was immobile, or as night time approached.

I became interested in the body’s ability to heal itself. I felt empowered and began to explore the psycho-somatic connection to chronic pain as well as self-empowerment in health and explored the body’s ability to heal itself.

I began observing people in pain.  Watching people at the chronic pain clinic was illuminating.  I could see that for many, their identity was deeply rooted in their disease and pain, and they couldn’t see past it.  The blanket had smothered them.  They were deeply committed to their narratives of dysfunction, and those narratives were continuing to shape their bodies.  Much like my own narrative of pain, I realized.

I dabbled in the paleo diet, which offered a bit of relief for my stomach issues, I reduced starches in my diet and tried out ketosis and intermittent fasting.  I lost weight.  I incorporated natural care products into my life, I meditated and became mindful. I worked with a psychologist.  These were all gifts that I believe would not have arrived in my life had I not experienced this pain.

This marked a shift for me.  Not in the physical experience of my pain, but in the mental interpretation of it.  It marked a return to mental health nd I am approaching a state of thriving again.  Perhaps not in the physical domain, but in my experience of life, yes.  Pain no longer limits my lifestyle choices, it only informs it. This is an important distinction.

I realize this may be weird, but I thank my pain in some respects. I feel gratitude for what it has given me in terms of grit, resilience, determination, and a commitment to a healthy lifestyle, especially mental health practices. My lifestyle is better with the pain than it would be without.  Though I modify many activities and have removed some, I have added so much more.   Yes, I work with many inconveniences, inabilities and modifications to simple daily facets of life, but the things that have opened up for me in my mental and emotional life far outnumber the physical inconveniences.

The Third Maternity Leave

Around came 2017-2018 and my third maternity leave, when things got even more weird.  The timing was interesting, because things got worse the moment I decided it was time to heal.  I seemed to be experiencing full system flare ups to the point where they weren’t cyclical in nature anymore, they were just constantly there.  There were no more stages of relief or regression of symptoms.

After delivery, I developed an internal Strep A Infection and went on an intense round of IV antibiotics.  All was well and good for the first month or so, and then things began to get strange. I realize that is not a legit medical term but anyone you speak to with auto immune has a similar language. Things got strange, things got weird, flare ups, cycles.  These are all common words.   6 yeast infections back to back.  Fatigue.  CRUSHING fatigue. The fogginess and fatigue I’d struggled in recent years with became much worse.  It went from inconvenient and easily fixed to debilitating and unsolvable.

I haven’t mentioned it up to this point, because, as you do when you have lots of stuff going on, you simply push it aside. It’s just another thing that isn’t legitimate because you can’t prove it in western medicine – until it hits that level where it’s interfering with your life (and then you sit up and pay attention.)

I simply couldn’t make it past 2 in the afternoon each day and most of this maternity leave, if my husband has been home, I’ve spent sleeping.  I genuinely enjoy naps and think they are a healthy part of life, and advocate them – but these took on a darker edge.  I was desparate every day for my kids to nap so I could lie down and gather my energy for the evening.  I simply could. not. make it. past. 2.

My thoracic pain intensified and progressively spread throughout my whole back, particularly my si joints, low back and hips. I struggled to sleep at night because of the aching. I started developing bad – and I mean bad – pain in my intercostal muscles and facet joints down the right side of my ribcage, so I was faced with sleeping on my left side to avoid my ribs, and then rolling over to sleep on my right side to give my aching hips some relief.  Back and forth, back and forth all night.

I am noticing how hard it can be to get out of bed in the morning now, and find myself trying to unfurl my right index finger which seizes up into a trigger position.  really, where the f**** did this come from?  That’s what you ask yourself a lot with auto immune issues.  Whaaa?  Seriously?  This part of my body is now weird? The immune system is complex and confounding . Any doctor will tell you that We don’t understand it yet.  We’re getting there, but we’re still clinging to little islands of function and knowledge, rather than understanding the entire ocean that is the immune system.

Other things have happened. My hearing is changing.  I experience tinnitus on and off with ringing.  My eyes go through these weird super dry and scratchy phases that bug me at bed time.  I’ve never worried about my skin, but now have painful pimples in a halo around both of my armpits that hurt enough that they keep me awake.  I never even had zits as a teenager so this is all new to me. Low platelet and iron levels that I can’t seem to get up despite diligent supplementation and lifestyle practices.  Even a strange swollen lymph node at the base of my neck.

Today at a workshop, I genuinely had trouble staying standing for the 30 minute duration.  Constant movement seems to be my only relief, yet certain movements will take me down for weeks at a time, particularly spinal flexion.

Try telling a mum of 3 not to bend forward or over ! I have to get my husband to help me with any household activity involving bending forward, otherwise I am incapacitated.  I recently, at the age of 36 bought a reacher grabber tool that the elderly use, because picking up toys off the floor is not worth the pain that will come within hours.

The Scare.  Healing Gets Serious. 

The final straw for me was an episode with neck pain about two months ago. I woke up in so much pain I couldn’t get out of bed.  My baby was crying in his room, my toddlers were trying to tug me out of bed, and almost any slight movement almost made me scream.  After 3 labours, I can confidently say the pain was up there with labour.  After a friend came to help me up and take my kids, I went to the hospital sure beyond a doubt that I had injured something – and badly. My alarmed husband drove me to the ER and I was sobbing with the slightest movement of the car. I was in that much pain.  Even in labour I was still cracking jokes between puking.  This?  Not a chance.

What did they find? Nothing.  No herniation or horrible injury.  Just general pain in my neck.  I was absolutely dumb founded that something so innocent could be so debilitating and have no solution.

A few weeks later, a similar thing happened.  My entire low back seized up. There I was, on the floor, again, 3 kids in the house, on all fours, unable to get up to the couch.  These two incidents have been so alarming to me and have taken my healing from important + not urgent, to important + urgent.

I can manage physical pain, but there is no worse feeling in this world than being incapacitated as a mother when your children need you.  That friends, is acute distress.  Unable to help yourself or your children who depend on you. I’m used to pain and can deal with it, but that, that’s a no go.

I’ve chosen to interpret this as a really, really obvious sign from the universe that healing takes on other dimensions than simply fix it structurally.  Scares like this have forced me to go deeper.  To work with somatic coaches, and even a shaman to understand deeper soul work and soul retrieval.  You know, the woo-woo stuff. 

You may be wondering about the clinical side of things in all of this,  versus the experiential side of things that I write about.

What has clinical western medicine actually told me?

I had updated imaging and X Rays done on my spine at christmas.  A few things were different in the 6 years since my last one.  There was no obvious herniation any more in the thoracic spine, but signs of inflammation, more degeneration throughout the spine and an arachnoid web that was new since the last MRI.  Additionally I have sacroillitis.

A spine specialist bought up the word ankylosing spondylitis.  I had absolutely no idea what it was and came away only remembering that it sounded like ankles and spongebob squarepants.

Of course, I dug into the clinical journals, to learn a bit more, and it was profound.  The symptom lists, and even people’s experiences were literally my exact experience.  It was like a light bulb went off. In a good way.  Literally everything I have been experiencing since my mid 20s was listed in the symptoms.  All of a sudden my mind shifted from “old injury” to “ongoing auto immune condition?” and I felt validated.  I may not be crazy or a hypochondriac after all.   I definitely feel a bit of hope at this point that there’s a way out of this.  I’m not sure if it’s a thing for people to feel happy at the possibility of being diagnosed with a disease for which there is no easy cure, but I was thrilled at the idea of it all making sense and the puzzle pieces possibly coming together. 

I am a few weeks out from my first rheumatology appointment to explore all of these symptoms and the possibility of AS. Initial blood tests have revealed that I am not HLA-B27 posiitve and my inflammation markers in my blood were not too wacky.  So there’s some things that point toward it, others that point away from it, but no doubt, something is up.  That brings me to my next point.  TRUST YOUR GUT.  If you think something is up, give your gut credit.  Something probably is up.

As a coach, I feel very strongly that we shouldn’t await a diagnosis or give a diagnosis power, or even wait for a doctor to tell us what to do.  It’s silly not to give ourselves permission to pursue vitality and healing.  It’s our body and our health and a doctor is our partner, but ultimately we must take ownership for our health.  I believe in focusing first, and foremost, on the mind-body connection and the pursuit of health and vitality, not the avoidance and fear of disease.  Rather than blanketing everything in our lives with an illness or a diagnosis we should blanket it with vitality and wellness.

But there is something to be said about reading about something and realizing that that you’re not crazy, that everything you’ve gone through with alarming frequency and intensity, may just be explained.  It’s a guiding lamp being held up as you trudge through a murky fog of one mystery after another.

I am taking to this blog to tell my story and honour that I have been through a bit of a wringer with my health, and that my viewpoint is valid and worth sharing. Culturally, I was conditioned not to share my experience, to set my jaw, chin up and keep on.

Here I am saying hold on a minute, I can share a bit of this.  

Something is happening in there, and whatever it is, it is part of my human experience.

To heal is to first notice and be honest with yourself about what is going on. 

There are so many things I’ve experienced that I haven’t bought up with my doctors because I don’t want to be that patient, and also because it doesn’t show up on imaging.  BUT in my heart I know something is not right and that life can be healthier and less painful than this, and I continue onward in the promise I made to myself 1 year ago.  I made the promise to myself that I’ll heal, it is time.  It is time to share and connect with others in a similar journey.

I look forward to getting the insight of experts, but I’m also not going to wait for it.  I’m going to keep digging deep with my coaching skills, and exploring the depths of my mind, body and emotions. To be honest, whether I have AS or not, the literature on auto-immune conditions, mitochondrial management and the microbiome has been deeply illuminating.  I feel all of these topics are a must-read for anyone that is currently inhabiting a human body. 

So that is my tale, my tale of potential auto-immune troubles.  So often people only share their tale once they’ve got a diagnosis of some sort, and feel like they are legitimized, but our experiences are legitimate, whether they have an external label or not.

I am choosing to share my own now, in the hopes that if someone out there is in this same, somewhat alarming early stage of discomfort, and beginning their own journey, that they are inspired to dig in and be brave.  Accept where you are, take the time to record where you are, and begin the work. Explore what healing means to you and your situation.

Just as mechanisms for injury and illness are different, so are mechanisms for healing.  Especially when we get into system issues rather than structural issues.

What may work for you, may not work for me, but we are all united in the commitment to live a life of thriving, not just surviving, or tolerating.

Wish me luck! xo

 

 

 

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s