107 ~ STTW hits one year ~

What prompted you to begin writing?

Turn the pages back to 17 months ago 24/07/2017

I recieved the following email from a past Dr:

Hi Khadeeja
I trust you are keeping well.
This email of yours somehow slipped under the radar. I don’t know how i missed it. I am glad you are undergoing all necessary tests and the doctors are now taking your case seriously.

** (We thought they were at the time)

Please keep me updated with your progress. Please do me a favour and write a memoir of your experiences or write a book on your experiences using fake doctors names. I think this information you sharing is valuable information that can help people suffering from your condition.
Your update is valuable to me. Hope you feeling better? regards to the family
Kind regards

Dr “…..”

I’d begun writing since 2016 in a journal. My safe place. Locked away.

Apprehensive, that if I make the reality public, again it would be falsified as “seeking attention”

Until one night

CONSEQUENTLY +- FOUR MONTHS LATER

I had enough & was done with almost 2 years of rumors, assumptions & ignorance. Helplessness spun me head over in a completely wrecked state;

16/11/2017

*Venting to a friend*

Veins beneath the skin of my feet are breaking & bruising in manner, the color appears onto the surface. Two Drs accused me of putting a colorant or stamping into something as such.

(A topic to be discussed in the appropriate chapter God-willing)

Now I can’t brush it aside because it’s not a symptom that occurs to a 21 year old, of course

But I’m so overwhelmed & tired.

Who? Who do I go to? Who will understand my conditions without putting me through more trauma???

Since this “last 2 experiences” who else is there to even try???!!

Our groups cannot really suggest a specialist for Dysautonomia, can you believe that?

How many volumes remain unspoken, hidden & trashed?!

The fact that we’ve searched the entire breadth & length of Gauteng, Free State & other provinces..

Only to write a list of 6 specialists who are skilled to identify certain aspects of Dysautonomia, not everything.

We’re all pursuing the search for better expertise.

Downright ridiculous!

You know what?!

I don’t care who refers to me by what kind of derogatory language now, it’s my duty to help create a change from personal experiences & knowledge.

I cannot determine a brighter future without taking a stance in this country, even if it be a small step..

This cannot slip by!!

The question is how & from where..?

Without a proper Dr to help advocate, the task proves more challenging but there has to be & there will be a way.

Let’s not view this as a mountain that cannot be climbed.

How do we establish a movement? It requires lots of thought & effort

If anyone has ideas.. please let me know… It will be greatly appreciated!

< IN RESPONSE >

A: You need to start up a blog

A: Its easy

K: Heyy good idea!!

A: You just need time and have to be interactive so people can ask questions and share their views

K: How do I make people aware of it? Spread the word around?

A: Yep, invite ppl to your blog .. Send out the link. Check on google how to design one

Into the early hours of the morning proceeding that night, sleep eluded me as I contemplated over the blog suggestion & the gravity of a situation – not only I am in

I prayed for guidance, then sought a few opinions & the GPS of my body told me to goooooo!

Wammm 💥

Without a lengthy deliberation, the next day;

17/11/2017

https://kayborninmay.wordpress.com/2017/11/16/you-cannot-see/

Was published.

https://kayborninmay.wordpress.com/about/ – now updated.

---

SO AS TODAY – 16/11/2018

Circles 1 year of an awareness course on the calender, I express sheer gratitude to my creator for being afforded this opportunity

And to every single person who supports me unconditionally & spares time to read = learn. May you be reciprocated from the Almightys treasures alone.

---

Many presume there is no big deal hoisted around sharing a picture with a fact or an article of importance.

Keep in mind, encompassing one “little” picture is a broader one painted outwards – as illustrated below.

Not to mention kindness & additional benefits that stem forth as a result.

Although October is dedicated to Dys awareness month, we’re
working around the clock to speed up the process for SA citizens.

Why?

Excerpt

from a post to be published with full details as part of hospital chronicles God willing.

My mind flipped back to the poignant memories of that vapid day

I had been awake since 4am & waiting at the clinic since 6:15am to 2:30pm

Called in as the last patient after having endured lengthy waits of hours, days & weeks only to be told

“There is nothing wrong”.

“Tests are normal”

“I shall sign off & close this file & you should not return to the neurology department at Johannesburg academic – Charlotte Maxeke hospital”

Without the standard diagnostic methods performed, in fact – unknown.

I stepped out robotically with a figurative pain in my heart so intense

I could hear the miniscules of it hitting the floor with 1 thrust of a 5 minute briefing.

Deep within, I knew the door had been slammed in my face because it would be useless or perhaps, detrimental.

With certainty I would not know

Besides trust this destined blow

The issue was not based on me! As much as I am entitled to recieve appropriate health care, when the result is the opposite, I can afford to seek help else where.

What about the vast majority of our population who are unable to afford treatment?

What do they do & where do they turn towards if signed off forever?

Witnessing the scenes yourself cannot compare to reading 💔 💔 💔

Together we can decimate this traumatic cycle!

Up to date, in my knowledge thus far.. Not one person has taken on an initiative of helping fellow citizens by establishing an open forum of advocating for Dysautonomia

Other countries have their own spokespersons..

So if no one is doing anything, should we all sit back & watch?

Why not extend our hands & raise our voices to help the lower classes of society if we can?

A contribution to our nation

A new forum aimed to amplify messages contained in the blog on a widespread public level.

Whilst invoking blessings & goodness from above, I reveal & officially present to you the joint initiative of a campaign titled:

@life_with_dys

Consists of myself & a few members who are not afflicted with Dysautonomia but have volunteered to assist the drive for this particular & other disease recognition in South Africa.

We are not gaining any monetary type of benefit.

We are carrying it out solely for all the past & above-mentioned reasons herein.

If cancer is common

Lupus is famous

Many others

Why when the word Dysautonomia is mentioned, people are like woah!!!!

Wait a minute. Slow down. What did you say?

I’ve never heard it before.

Say it again.

D-what???

---

Only when my entire self was crushed by an impact deemed beyond repair

I learnt to create mosaic and construct a mini empire from being rare

If every fiber & ounce in me wasn’t cracked, new roots wouldn’t have sprouted

If I wasn’t constantly buried deeper into a pitch black pit, no “fruits” would’ve blossomed

If I wasn’t torn apart in many halves, I woudnt have acquired the skill of sewing myself together again

If I hadn’t sunk due to the endless pattern of failed appointments that lead up to that particular juncture,

Swimming Through The Waves

Would not have commenced, let alone celebrated as 1 year old today…

🎉🎊🎈💐🎗️✨🏆

و ما توفيقي إلا بالله

الحمد لله الذي بنعمته تتم الصالحات