heaven in a grain of sand

i recently died and am becoming a new person. Here is my grave site. You definitely want to rot to this view.

This place is my only home on earth and where i’m going to join the bushman after i die. i don’t dare make a grave site as beautiful and moving as her’s. i just want my ashes spread across the surface, to become the sand. i can’t wait for the day…

i found out at that i’m not an oak, i am grass. i grew up in the highveld and my floods and droughts follow those rhythms of the climate i grew in. i burn to nothing every year and regrow in a new place. i’m icy cold wintery air on frosty crisp grass. i’m wind in August. i’m thunderstorms towering in the sky. i’m lightning striking the dry ground burning like dragons. i’m bright blue skies, the high pressure cell dragging your eyes up and up and up. i’m tiny soft green shoots in blackened crunchy crushed ashy

i don’t have solid roots like an oak. i have roots like grass. Apparently weak but growing back after every burning.

 

Just like the grass at the bushman grave. The storm uncovered the grave to reveal grass growing strong within a couple of days. One day nothing, the next day powerful grasses that look much older than the few days old they are. Old roots hidden beneath the sand. i will bend like the grass and challenge every windmill.

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The Meaning of Suffering (Viktor E. Frankl)

We must never forget that we may also find meaning in life even when confronted with a hopeless situation, when facing a fate that cannot be changed.
For what then matters is to bear witness to the uniquely human potential at its best, which is to transform a personal tragedy into a triumph, to turn one’s predicament into a human achievement. When we are no longer able to change a situation – just think of an incurable disease such as inoperable cancer – we are challenged to change ourselves.

 

commit random acts of senseless beauty

let go

be okay with uncertainty and doubt

Let’s see what I’ve discovered…

This is the story of the delay in endometriosis diagnosis, the immediate close friends in my life,  and what I’ve learned since my oophorectomy on 19 June 2017.

First up my university friends. We all went to the same doctors in the same town who misdiagnosed, mismanaged, mistreated, and even abused us all and how many other women?

One friend was told to “stop swinging from the chandeliers, sweetheart” as though that is even remotely an acceptable response to someone in pain.

I lived on a farm while doing my masters. There were other houses on the farm filled with fellow students who happened to be my friends. My house had three women and one man. Of the three women, two have endometriosis and one has PSOS. Our then neighbour has endometriosis. Our then other neighbour (technically a neighbour even if over a cliff and past a dam) also has endometriosis.

My husband lived with his friend N who ended up being his best man at our civil ceremony at Home Affairs. I recently discovered that she has endometriosis. I’m mentioning that she is a Xhosa lesbian only to draw attention to the challenges facing disadvantaged women in South Africa. It was difficult enough as a middle class white woman to find someone to take me seriously. It is even worse for more marginalised women.

One of my best friend who I met while teaching in the Middle East is a fiery redhead in her fifties. She has endometriosis and had a cyst the size of a mandarin on her ovary when she was 35 years old.

WHAT THE ACTUAL FUCK!!!

After my cyst burst 6 months ago, I saw a doctor who told me I was stressed. If she did her job properly, I’d have both my ovaries right now.

If any of the doctors in Grahamstown had done their jobs properly, I’d probably have both my ovaries right now.

If my symptoms had been taken seriously by any of the doctors I’ve seen, I’d probably have both my ovaries right now.

What has your experience been? Have you found medical practitioners who journey with you to find the best palliative, medical, and surgical options? Or have you had a string of Dr Bozozz (extra Z’s for sleeping on the job)?

No longer will I ovary react to anything!

The right ovary is gone, the left ovary has been ablated to shit, and the adhesions have been excised. And no, they won’t let you turn your ovary into a coin purse, even if it is twice the size it should be. If you suggest a paper weight instead, no one will be swayed.

I’m sown up in layers, but I’m feeling so good.

This pain is so much easier to deal with. Every time I get up it is easier. I feel better literally every moment. Oh my word. Yes. I’m aware that they have given me very nice pain killers. But still. Should have done this years ago!

Six months ago a chocolate cyst burst on my ovary.
The gynae told me my pain was caused by stress
and told me to relax.

Perhaps if she’d taken my pain seriously, I’d still have both of my ovaries right now. At least my new amazing doctor who is all empathy and light and believed me and listened to me.

 Before surgery

Nice overallsNice overalls.jpg

Nice undies (sexy eyebrow lift and come hither look*)
*ignore the swollen and distended stomach
filled with poisonous cysts and adhesionsInline images 2

They just let me lie upside down on the bed and worked around me.
So wonderful!
Before surgery.png

 

Downward dog with my right leg in the air to relieve pressure on my ovary was one of the few positions in which I had relief. Not an easy way to sleep. I had to go around in wheelchair which was super embarrassing. But then, running out of fucks to give was grand. People opened up to me in an amazing way and supported me. They felt very sorry about my ovary so they were kind. Maybe also cause I couldn’t walk. They rushed my surgery when they realised what was happening.

After surgery

I was very sensitive to light and noiseInline images 3

I’m less sensory defensive today, day 2 of recovery after surgery on 19 June. They wanted me to eat processed cheese and margarine on bread before letting me go home. Gross to a thousand million hundred. I only eat cloud bread. Luckily, I had my own food in my bag so I could eat something healthy and be allowed home. Which I vomited up the second I got out the car. Really the worst part of the whole experience.

The day after surgery

Cat is so clever and good. She sat on the edge of the bed watching me for hours. When I felt better she climbed onto my chest. She ALWAYS climbs on my tummy but she knew to climb on my chest instead. Clever girl 🙂

She is healing me with her love energy

Day after.png

I just had the best wee of my life, or at least that I can remember in years. Weeing causes so much trauma that I start bleeding again, and IT IS STILL BETTER.

I actually started crying because I felt, and still feel, how can I feel better after a month of not being able to eat, losing 6 kg, losing an ovary, being sliced and diced and cauterised, and I still feel better now?

I don’t feel like I’m filled with poison. I’m filled with healing healthy pain. Easier to manage than my least painful period.

Rambling. But those of you who shared you recovery stories gave me the courage to keep fighting for the answers to my pain, to advocate for myself. I feel empowered and assertive and strong. I can barely walk to the loo without my husband helping me. But still. That is how amazing I feel after this surgery.

That’s all for now folks. To anyone I forgot to email, you will never read this apology. Perhaps you’ll feel it in your hearts.

Keep fighting for your answer: medical, surgical, or palliative. You deserve to find relief!

Lots of love

Dear friends,

I wanted to send an update so that you can know what’s been going on. I’ve been experiencing severe period pain for many years without any body really being able to help me. Many doctors dismissed me entirely, the doctors in Grahamstown were the worst.

In my last few weeks in South Korea I had a month long period which was very weird. Going to a gynae in Korea is horrifying in general. I worked there for three years and saw four different gynaecologists. All experiences were terrible. This one was the worst. Apparently my 30 odd days of bleeding what looked like chocolate cake dough is fine and normal, my family’s genetic history didn’t matter (mother and aunt both had emergency hysterectomies), asking what she was injecting me with was considered rude and offensive to her status as an older doctor, and I just needed to be less stressed. Hmm.

Fast forward to finally finding someone in Port Elizabeth. He listened to me, respected me despite my rambling, and looked at what was going on. Based on my symptoms, he suspects that I ruptured a chocolate cyst on my right ovary.

He said he’d never seen cysts so clearly on the ultrasound, but I bet he says that to all the girls.

He recommended a laparoscopy  to confirm his suspicion of stage 3 endometriosis, maybe stage 4. I was concerned about money, so he started me on Visanne and said he’d see me in 6 months.

I started hormone therapy
I lost weight
I do yoga 
I meditate 
I exercise
(especially cycling)
I follow the endo diet
I see a chiropractor
I use aromatherapy 
Oh cannabis: the reason I have an appetite, the reason I sleep, it lowers my anxiety, relieves my pain…

I’m at Riet, I’m running up and down the beach. I’m picking up shells over and over and over. I’m petting the dogs. I’m cuddling the cat. I’m cycling. I’m walking in the mountains. I’m going to mall top dance parties. I’m hiking in Hogsback. We’re caught in a protest with R skillfully driving away while petrol bombs miss us, I reconnect with friends and family after a year away from home. I think my pain symptoms are a bit worse than normal.

What I think is ovulation pain is actually gastro.
I lose 5kg in 3 weeks.

My father’s response: why are you trying to lose weight?
Me: ? (in my head) For a clever person you’re very stupid. I’m telling you how sick I am.

Also, don’t tell me horrifying stories about nurses being suspended for not putting Mom’s catheter in before her emergency hysterectomy due to endometriosis and fibroids.
(I’ve only had two bad panic attacks about that, one resulting in R jumping in the shower fully clothed to calm me down, and burning his toast because he has to talk me off another emotional ledge)

I schedule an appointment for 30 June.
I luckily get a cancelation and see him early.
He tells me my ovary is twice the size it should be (oh, that’s why it’s so sore).
He books be for the earliest op on 19 June.

I’m so lucky to have this surgery.
He is taking a conservative approach,
he will save what he can
and take the ovary out only if necessary.

No matter what happens in this surgery things are good. Somebody believes me. He will ablate what he can. If it’s worse than he anticipates he’ll zip me up and send me to a specialist. The Visanne side effects are diminishing and they are stopping my period which will prevent regrowth. He’s given me antidepressants to help with the Visanne side effects, while the nausea, heartburn, and migraines are lessening. This  is so rambly but I just wanted to let you know and ask you to send me positive thoughts.

Finally. Advocate for your body. Find someone who will help you. You’re not crazy, the doctors do not have the necessary skills and knowledge to give you the medical, surgical, and palliative care you deserve and need.

lots of love

Menarche

Her chocolate brown eyes, so unlike my own blue, were dark and terrified, betrayed by the body rebelling against her. Suddenly, certainty fled my world as the person I’d always relied on to be there for me needed help, and I couldn’t do anything.

My mom had an emergency hysterectomy when I was young. Fibroids and endometriosis. A delightful cocktail. I should have known then what was in store for me considering the genetic component to the disease. But at the time, I remember being sick with fear, not knowing what was wrong with my mother, aware that it had something to do with her period, even though this was the first time she had ever mentioned hers to me.

I’ve always been secretive about my period, not wanting to let anyone know when my most private monthly time was happening. It’s a weird side effect of my upbringing, I guess, to be be very private about bodily functions.
My mother and sister can barely wee in a strange loo because of their shyness. But this reticence to open up about my period became increasingly difficult to hide.

Without me noticing, I’d reached the point when I only had one good week in a month when I felt good, when I could be my self, uninhibited by pain.

Two weeks had varying levels of nausea and cramping. That right ovary, especially, became my warden and parole officer. Unexpected movements, dancing, being too happy and laughing too deeply, resulted in a hook and pull from several opposing directions tightening around that ovary like a chain and reigning in my natural joyful movement.

I move slowly, rigidly, ready to grasp and poke and massage the pelvis, the thighs, the ovaries, wherever the next pull comes from. That one week of pain to the point of passing out can be avoided with my arsenal of defence: anti-inflammatories, a heat pad, ginger, and a hot bath.

The emotional strain, the irritability, the stress, the fatigue from pain, the foggy feeling due to devouring anti-inflammatories, the toll on relationships with friends and family, how many signs did I ignore? It was the over thirty day period, with thick chocolate brown blood continuously and seemingly unendingly drip drip dripping that ended my willful blindness.

The gynaecologist saw a clear picture of cysts, especially on the right ovary. He wants to do a lap, and suspects that he’ll have to cut out the right ovary during the procedure. In the mean time, I’ve started Visanne as a way to halt the growth of the diseased cells. Perhaps once I’ve dealt with the shock of this hormone therapy the recovery after the lap will be smoother and the regrowth prevented for as long as possible.

Endometriosis. It’s a bitch.