This is me.

Hi,

I'm Bonnie.
This is my journal.

**

Let me tell you about my journey ...

**

 There is a 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 handful 

of 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 

(until a few years ago).

He was ... and is still ... the only 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-seven this coming year.

 "Bumps" isn't the best word to describe what
this disease does to your body, but I 

like that word 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 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 have mostly lived with the disease in 

stages one and two.

 My bumps 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. 

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 again.
 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)

and 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 too 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 few 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 (and now years) continued on,
I continued to see more changes.

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

 And then, at some stage,
 I realised I hadn't had a new one
for a while! That was incredible feeling
 and way beyond what I ever thought possible.

 I have started to add foods back in to

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.

**

What is your story?
I'd love to hear if you have found success in changing diet and/or lifestyle.
I'd also love to hear if you are just beginning your journey!
Leave me a comment ... let's talk!

xx