Wednesday, March 7, 2018

My HS story.

I've been wanting to write this post for the better part of a year but haven't found the courage.

You know that quote that says :
"Everyone you meet is fighting a battle you know nothing about.
Be Kind. Always."

That quote has resonated with me since the first time I heard it ...
because I believe it to be completely true.

Everyone has a battle. (and so many of them secret.)

I'm about to share mine with you.

Let me give you a short introduction to the video below,
an introduction in how it pertains to me.

I have Hidradenitis Suppurativa. (HS)

 I didn't know it was called that until a few years ago ...
I always just called it "my bumps" ... and only to my husband
because he was the only other person who knew the
extent of it (again, until a few years ago).  He was ... and is still ... the only
other person apart from doctors who have ever seen it in it's entirety.

Unlike Jackson, who shares so bravely in the Ted Talk below,
my HS has always been able to be covered up by my clothes.

I remember getting my first 'bump" when I was about thirteen.
They haven't stopped since.  I will be forty-five this year.

"Bumps" isn't the best word to describe what
 this disease does to your body, but I like it better than boils.
However, boils are what they are.

Jackson gives a good description in the video.

Watch the video and then ...
if you're still with me ... I'll share a bit about
the last year ... and the journey I have been on. 
The journey to healing from HS. 

My story is different to Jacksons. 
I was a healthy kid.  A healthy teen.  I'm a healthy adult.

BUT ...
when I was thirteen, I started getting "bumps" in my groin. 
They were painful and embarrassing and I didn't tell ANYONE! 
This was before the internet so I didn't have google to help me out with answers.

As the years progressed, so did the "bumps", they moved into my armpits
and other places where there is skin to skin contact.   There didn't
seem to be any discernible pattern.  They just came and went. 
Sometimes I'd have one.  Sometimes I'd have many.

Sometimes when you have more than one, they tunnel together under
your skin ... this is stage three and I have only ever had that happen once or twice.
I think I have mostly lived with the disease in stages one and two.

They varied in size. 
Jackson talks in the video about
getting ones that are baseball sized. 
I can imagine, but have not experienced,
 the pain he has suffered with ones that size,
mine have only ever progressed to the size of a golf ball
but I've literally passed out from the pain of having someone
or something bump into (or from sitting on) one of those!

They don't heal with any sort of regularity.
Some stay for a long time - months.
 Some for a short time - weeks.
Some just disappear. 
Some burst.

All of them have left scars that do not heal.

I never went to the doctor specifically for my HS. 
I had an emergency room "trauma" as a three year old that left me
quite frightened of doctors and hospitals for many many years. 
But if I had to go to the doctor for something else, they
would usually catch sight of a scar or a boil and I'd
ask them if they knew what it was.

I was relieved when I asked and was told that it
was NOT some sort of STD which had always been my fear! 
I figured I had caught something from a toilet seat!!

I was told all sorts of incorrect things.
One doctor said it was acne and it would clear up when my zits went away.
It didn't.   The most common mis-diagnosis was swollen lymph nodes
and/or ingrown hairs.  They told me I could have them surgically
removed if they bothered me too much. 
With my love of all things medical I always said "no thanks!"

I learned how to care for the boils myself.
 Hot compresses, epsom salt baths, bandages,
various ointments, these were my best friends.

I learned how to care for open wounds too
because when something the size of a golf ball bursts,
it creates a similar size hole in your skin.

I was always on the lookout to see
if I could see evidence of it on anyone else!
I never did. 

I always kept my ears open to see
if anyone ever talked about similar symptoms. 
They never did. 

Years and years and years (like 25 years!)
went by and then one night, I was up late by myself. 
There wasn't much on TV and I was half watching a show
called "World's Most Embarrassing Bodies" and I saw it!!  I knew that the
person they were showing had what I had!  I grabbed a pen and wrote
down Hidradenitis Suppurativa.  And then, I started googling!
What I discovered what that there was no cure.

I stopped googling.

I had managed all of these years. 

I'd be fine.

A couple of years later, just after I turned 40,
I went to have a routine check up with a new doctor.
She was the first doctor to ever say to me
"I think you have Hidradenitis Suppurativa."

I couldn't believe it!

After all these years, finally, I had a proper diagnosis. 
She recommended that I see a specialist.
I think it was a dermatology specialist and so I went on the waiting list.
 It took two years to get that appointment!

In the mean time, I decided to start researching for myself. 
I knew there was no cure, but I wondered if there was anything 'radical'
out there ... anything that I would feel comfortable trying.

I don't remember the time line or all the details
and they would be boring anyway but
I discovered that HS was an
autoimmune disease.

(although there is still some debate about that ... some refer to it as an autoinflammatory disease)

In any case, some people had found remission from HS
by following the Autoimmune Protocol (AIP).
I wanted to be one of them!!

Mid April 2017, I stopped eating all grains (including corn), seeds,
spices that come from seeds, nuts, gluten, sugar, soy, dairy, 
and nightshade vegetables. (nightshades are tomatoes,
peppers, potatoes, goji berries, eggplants)

I eat meat, fish, vegetables (apart from nightshades), & fruit.
I eat as much nutrient dense and gut healing food as I possibly can! 

But AIP isn't just about food.

I started to pay attention to how much sleep I was getting.
I aim for eight hours a night.  I don't always get it but I
find that I get much closer if I'm aiming for it.

I pay attention to my stress levels.
I intentionally do things to lower them before they get high.
I started walking on the beach as many mornings
 as I can.  I don't make it every morning but the
few mornings a week that I get my toes in the sand,
my face in the sun, my ears filling with the sound of the sea,
my eyes filling with the beauty of the sky do me
so much good.

It relaxes me even to write about it!

I make sure I exercise.
I walk.  I do pilates.
I swim a couple times a week.

And do you know what happened?

Nothing for the first few months.

But I joined some AIP and HS support groups on facebook.
I asked questions.  I listened.  I tweaked what I was doing.

And after about three or four months, I started to see changes.

Small changes but oh my goodness ... changes!!

My "bumps" started to react differently.

They didn't get as big.

They didn't stick around as long.

And as the months continue on, I continue to see more changes.

Eventually the "bumps" stopped bursting!
They all just started to disappear on their own.

And then, this month,
I realised that I haven't had a new one! 
This is incredible!
It's beyond what I ever thought possible.

I have started to add foods back in and see how my body reacts.
This is probably the trickiest part of the whole thing.
But ... I'm encouraged!

I'm encouraged that this disease can be managed.
People ask me if it's hard to have such a restricted diet.

My answer:

Sure, it can be a little bit difficult sometimes.
Difficult to not eat my favourite foods.  Or to feel like "that person"
with all the weird dietary restrictions.

But not as difficult as living with boils the size of golf balls
or open wounds that take months to close.
Not as difficult as being in chronic pain for more than
thirty years and a diagnosis of "no cure".

Not as difficult as not having an end in sight.

And all because of a choice.
A choice that is all mine.

And making that choice each time I decide if I will or won't eat something

 ... that is easy.


Pretty Tarafying March 8, 2018 at 12:28 AM  

Oh Bonnie I had no idea! I can relate to living in pain with no diagnosis for decades. I too, just got mine 2 years ago & it was so liberating to FINALLY know how to combat it. I'm so happy for you and am encouraged by your honesty and for directly calling out your affliction for what it is - the bad, ugly & worse. [Hugs] for future healing and enlightenment!

Bonnie March 8, 2018 at 8:01 AM  

Thank you Tara. I'm glad that you are feeling liberated and able to attack whatever it is you are fighting too! xx

Anonymous March 8, 2018 at 11:33 AM  

Thank you for be so courageous in talking about your journey with HS. I know this will be a blessing to so many others who are also dealing with this disease. Blessings!Be! as you go forth and gain even more wisdom.

Mari March 8, 2018 at 11:55 AM  

I've never heard of this. I'm so thankful that you finally have a diagnosis, and that you are doing so well. You look healthy and happy! Thanks for sharing this.

nificent March 9, 2018 at 3:02 PM  

Bonnie, You are brave and beautiful! Thank you for opening up and sharing. Oodles of LOVE to you, Christine Butcher

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