#to reschedule but never got anyone and the voicemail box was full so

[iliveinprocrasti-nationn]

hello endocrinologist. please call me back.

[zeebartels]

First & most importantly –

All my love and thanks to my family, who know how much/little to check in on me and not ask too many/too few questions – DeeDee, Tins, Curtis, Manon, Chants, Casey

Zain – for being my hospital Saviour and just my favourite Pakistani ever! Chad – for trying your best to lie to the parents when KB ask the 2 questions you weren’t allowed to answer truthfully – that is what cousins are for. KB – you are my heroin and without knowing it guided me through this – WWKBD!

Elisha + Nico – for being the best big Sister + Brother a girl could need. There are no words to express how much I love you and appreciate you. Sis! looks like I will live to meet yuh man and you are the best secret keeper.

And, The NHS for existing [you can take all the National Insurance you want from me], King’s College Hospital & my multi-disciplinary team of docs for being absolute stars and sorting me out real quick.

So… it’s been a fucking mad end of this year.

I hate this time of year, it’s never felt happy or joyous and honestly I just see the loneliness in the world in this ‘festive’ season, and now compounded by the loss of my father on Boxing Day 2013 – this time of year I’m always thinking – where is the highest mountain or deepest hidey hole I can find until this is all over. But I think this year has taken the cake!

So I had this cough since end of July, no biggie – it’s a cough.

In October, I was inexplicably breathless speed walking to the boarding gate in Amsterdam with Court.

November 19th, I had the craziest fever – trying to sleep, laying naked in my living room with my windows and sliding doors open in the middle of winter and I still felt I was in Trinidad in midday hot sun.

Chaddy boy came over the next day and seeing I couldn’t say one word without having to catch my breath – emergency doctor’s appointment became mandatory. Now I am the worst patien if I can walk and not screaming in pain – I good, dancer habits die hard. So you know shit was real at this point.

Doc Wedgwood tells me to go directly to A&E 1st thing in the morning, She means – DO NOT pass go, DO NOT collect £200 [which would have been damn handy seeing I just quit my 2nd job for the year on Halloween – that’s another story though].

Of course, I was like “listen, give me some drugs so I stop this violent coughing business and could breathe cause I have a job interview tomorrow that not only do I really want to go to but shit! I need to be able to pay rent in 2018 and there is nothing that will make me move from the best flat in the world.”

We had a bit of a back and forth and this woman was not playing but no chest infection is going to affect my plan. Cue – an interview reschedule and I head to King’s College Hospital bright and early the next morning.

Give some blood and x-ray my chest. Then @ 8:50am the lovely good looking Isiah made everything a little more concerning. He asked me to stick around and started asking me a bunch of questions and after trying to be slick, I got him to eventually admit to me that, “My Chest X-ray is concerning, and I need to go to my GP 1st thing tomorrow to discuss the results”

Fuck me! So not a straightforward​ chest x-ray, not a simple case of a really bad chest infection. But you know I’m on a mission, cause I can’t tell my mother I quit another job this year without having sorted another, so I have interviews to get my ass too​.

Fast Forward to that afternoon, and my Doc Wedgwood left 2 voicemails and emailed me about my early morning results appointment – slight panic set in, so I called in the reinforcements for this appointment – enter Nicholai from Stage Right.

So much changed in a couple sentences that Wednesday morning.

“Your chest x-ray isn’t good. We have to do more tests to fully diagnose, but it’s 1 of 3 things –

Lung cancer [WTF?!?!], Lymphoma [this woman crazy!?!?] or Sarcoidosis [I know she crazy cause only people on House or Greys’ Anatomy have that, and those are TV shows].

Your heart rate is 160 – it’s working too hard and your lymph nodes are inflamed around 400%”

If Nico didn’t say respond – I woulda tell you – that was the most vivid dream I ever had. My Big Brother [as he introduced himself to Doc Wedgwood] asked the sensible questions. I said – how the hell do I tell my mother & sister?!!?

The Bartels Soldier surfaced [I am the child of KB – the Original Gangster] and I needed to make a plan. I started my “I’m dying” folder in my Notes.

What needs doing…

What are the next steps to diagnosis?

Who needs to or should know?

Do I change my pension beneficiaries from my Godchildren​ to my mother and sister [the original plan of them being gone by the time I die may not be the same]?

If it’s a cancer – do I do the fucked up chemo thing or just make sure I enjoy the rest of my time?

Sweet! I lost 10lbs in 2 weeks and I didn’t even make an effort – this could definitely be a good thing!!

Who needs access to my business if shit goes downhill from here.

Answers…

Kings’ College Chest Clinic will call me with my next appointments and instructions

Nico [he was there], Elisha [she’s my person], Chaddy [he knows something is up]. KB + the rest will know when I know what is what

Diagnosis 1st then change beneficiaries if need be

Stage 1 – we will try ah ting & KB will have to come and mind her chile in London. Late Stage 2 and beyond – I’mma just ride this out and see what happens

I have 50lbs I need to lose and hate exercising so this is a real good thing & I’m going to ride this train as much as I can [so far -20lbs + counting in the last month]

Elisha – all of it. Nico – my hospital details.

  So here is what followed:

My symptoms got worse –

I can’t walk 1 flight of stairs without being winded, I have to plan all my journeys around tube stations that have escalators and leave enough time to catch my breath before I have to speak to someone. And keep those to a bare minimum

Talking too much is difficult – not a problem for me, I’m not the biggest fan of people

Eating is tiring and takes my breath away – so most things become blended, good thing I had a bunch of already made frozen soup

I have violent coughing episodes that make anyone in my vicinity think I’m dying from the plague – They just gonna have to deal with that

My ribs are sore from all the coughing, so inhaling is painful

No matter how much water I drink (we are talking 3-4 litres a day) I still wake up at least 4 times every night coughing because my throat is so dry

I started sleeping on top of towels so my bed doesn’t get soaked from my night sweats

I decided on a hospital uniform – my fav GAP grey sweatpants & large quilted super cosy GAP jumper & NikexLiberty Air Max 90’s

Another 3 blood tests – 1 of which I had to tell a very fass phlebotomist about herself and that I do not need a husband nor define myself by the presence of a man & I still don’t know my blood type

A CT Scan – Yes you really do feel like you’ve pee’d yourself in your swimsuit and that cosy warmth stays with you for a couple seconds

A result appointments that only said more tests to come – Doc Turner didn’t seem too​ impressed to hear about my “I’m Dying” folder and whatever other snarky comments I  made

A bronchoscopy – My body was not happy about the invasion and started bucking like I was possessed and thus a punctured lung (more Grey’s Anatomy​y drama), I woke up, or more specifically, regained memory whilst in mid sentence to the nurse.

A week later – I found a bunch of druggie selfies and pics of bloody liquids [I assume came from me], and videos of my canula removal – no memory performing these actions and I doubt the nurse used my phone.

A PET Scan – preceded by a semi breakdown in the waiting room, it kicked off because they go my appointment times wrong, I was real tired and it was my 2nd day of fasting for a procedure. So a very unhappy Zara came to visit shouting for my doctor and threatening to start breaking things led to a coughing episode and was completed by my pee-ing myself while I’m trying to cuss them about their time fuck up. Eventually – they made me radioactive and I went home to my bed.

Ended that day with my cancelling an interview, receiving confirmation of 2 different job offers coming to my inbox within the next couple day and a late evening voicemail from Doc Turner “It’s good news – all things considered. I’ll see you on Monday and we’ll discuss treatment and long-term”

Well thank fuck for that! At least I don’t have to inject my self with poison. I can deal with that – and I can tell KB.

Monday 18th December – Final results appointment + diagnosis =

CONGRATULATIONS!! You’re a winner!!!

You only have a rare autoimmune disease that we don’t know much about but we can give you mood altering weight gaining steroids for symptoms but not much else. We don’t know what causes it, your symptoms can disappear as quickly as they appeared and never reappear, or you could get lung damage. You’ll have to come to the hospital once a month for a full workup.

BTW – how are your eyes feeling? Tired? Warm? Cause this could affect your eyes and your brain too.

Sarcoidosis is now your long time companion.

Gee! Thanks Doc Turner – you’re my hero.

Everything was made right literally in one afternoon, an afternoon where I felt so shitty, couldn’t catch my breath, breathing was painful and my constant coughing made me want to die.

I get to call my mother and tell her – it kinda went like this

[Me -ZB] Hey KB, so I have something to tell you. I quit my job on Halloween… [KB] Oh Shit man Zara! That was 2 months ago [ZB] yeah but I just had 2 offer conversations with 2 companies & I’ll decide on one of them later today, so the job situ is in hand. [KB] mmm hmmm [ZB] Annnnddd, I was being tested for Lung Cancer, Lymphoma & Sarcoidosis, but I only have Sarcoidosis. The best of the 3. [KB] What you saying? [ZB] {Long version as above} [KB] OK, well good thing you there and not here. You are my special child. First it’s your special mouth disease [that is another story – missing some jaw bone]

Ma asked some really good questions and we lime for a lil while on the Skype.

Hardest part done – So now, we sort shit out.

The job is decided on, I’m now the Head of People for a Games Company.

New Meds –

Getting my steroids via inhaler – straight to the lungs, minimise the side effects of steroids in the blood. I know the steroids would have given me a real reason to be fat but the mood swing business, I wasn’t really in the mood for nah!

More Codeine = more constipation – so increase on the prunes and keep on with the greens.

True Story – I’ve been on some form of codeine for the last month – A couple weeks ago, I’m sitting on my toilet for 20 minutes, my legs are numb and I’m crying with frustration cause really I’m a 36 yr old constipated woman, and all I want is for this shit to no longer be a turtle and become a drowned log. I have a coughing episode and all that shit comes barrelling out! The biggest most literal F-ough (fart+cough) that ever existed!! 

So now it’s the road to getting right, I have to be a bridesmaid in Court’s wedding and I’ve got 3 months to be able to breathe while I walk down her aisle.

I’m thrilled that I don’t have to tell my mother + sister that I have cancer at the same time of year we found out and lost my father to cancer.

I get to be on a special list for people with Special Diseases. I call it “exotic”.

I’ll lose the next 30lbs probably without much annoying exercise simply because I have to cut out all inflammatory foods and my body seems to be on that trajectory, once the vaporise steroids don’t get in the way.

And I get to learn more about this odd disease and I won’t be receiving a ridiculous hospital bill.

Everyone is now caught up and I wish you all a brilliant year and all the good things.

2018 is setting up to be a smash hit! I’m pretty excited.

Walk good

xoxo.​

I am a patient on House + Greys’ Anatomy First & most importantly - All my love and thanks to my family, who know how much/little to check in on me and not ask too many/too few questions - DeeDee, Tins, Curtis, Manon, Chants, Casey…