I have learnt to live with my disease.

I have learnt to live with my disease.

Over the years I have accommodated it, just like how you may at times be a gracious host to your guests, families and friends and do your best to accommodate them. Except my guest has stayed on for quite some time now- unannounced and is really testing my patience.

I have taken hot water bags, painkillers, pills, extra socks and panties, pantyliners, spare change, sanitary pads and tampons, my ‘safe’ towel/blanket (it’s my little towel or blanket that gives me comfort in times of pain- I need it around me to be calm), hot water kettles, special food, buckets and warm clothing to a lot of places that I have traveled to. People laugh at me and make fun of my ‘bubu’ (aka nanna) ways- but I do this because of this disease.

This post will be an ‘overkill’, my vent for the day/week/month/ year – something along those lines. Anyways back to this disease that I have learnt to live with.

Ever since I was a teenager, I have had regular visits to the hospital for everything under the sun. No I don’t have a weak immune system and the reason why I was (and continue to be) at the hospital so often was because I was often misdiagnosed for something I didn’t have. This disease was to blame. I was diagnosed with this disease when I first had my surgery even before I had my first sexual experience. By the way- I was cut open for something else till they realised what I had when they opened me up. Yes, something along those lines, because I was told about my diagnosis and the disease few hours after my surgery when I was heavily drugged and had no idea about most of the details that was shared.

So fast forward to the present, where I have been going back and forth to doctors, specialists, clinics and hospitals (with loads of money being spent in the process) to talk about the next steps in terms of my health (let’s not talk about my mental and physical state and how exhausting it has been because it does not matter- clearly the private health system does not recognise this, it’s a bloody fucken money making institution!)- so my entire year has been about changing specialists, clinics, doctors, medicines (and more medicines), injections, getting metal objects shoved inside my vagina, showing off your vagina to different people, getting naked and showing off your booty (yes I try and find the humour in all this), bloods being taken (sometimes without the sensitivity/caution it deserves), CT scan done, more scans done, finding out my CA125 results are off the charts (in the 300 level), and continuously having my appointments being delayed by long hours yet having to repeatedly give my phone number to the administration/reception people to remind them to contact me in advance should there be any changes to my appointment, because I hate spending my weekends and after work hours at the hospital. I mean, I am seriously under the impression that they must think that I LOVE spending my Friday nights, and Sunday sitting along the corridors/ waiting room just to hear my name being called out and when I do go up- I am quizzed about whether I really am Veena Singh. What the fuck does Veena Singh look like??! That’s what I often think quietly to myself, yet what comes out of my mouth- “yes, that’s me”, and proceed walking to the allocated room. I occasionally explain myself (when I am not so exhausted), or when I am not feeling the best, I ask them what I should look like, then the conversation becomes racist and discriminatory then I often ask them if they realise that India in itself is such a diverse country that depending on which part of India you are from, caste, if you are mixed etc. etc., you will have different or similar characteristics or physical traits…anyways this is part of my frustration, but this post isn’t about what I look like or whether if I am Indian or not Indian enough! I mean I can ‘curry the life out of anything’, ‘matko my night away’, ‘and bloody hell read, write and speak in Hindi’ quite well- but too bad being Hindustani these days is about your features, definitely the hair and colour of skin.

But back to living with this disease, my close family and friends know how I feel about this unwanted guest. I honestly am so tired! I have been saying that I am sick and tired of all these fucked up trips to the hospital. I have done so much research about this disease that I know what to do and what not to do. I only wished that the treatment I get from professionals made me feel better at least. I feel that this disease is not getting the priority it deserves. I am not asking for much. I am not one of those cranky patients who complain about everything. I appreciate the hard work of the nurses and doctors, I understand the constraints within our health system, I understand the challenges- what I don’t understand is ‘why in the fucken hell do they have to waste my time, money and energy’. This disease has made me tend to its needs like no other. I have never tended to anyone like this, not even to what I am most passionate about. I am so considerate of this disease. I accommodate it. I go out of my way to make this disease be under the radar and manageable, to be comfortable-yet to be told that ‘hey, can you come back later’ is not good enough!

Anyways- I will stop for now because I just needed to vent. My next post will be about the treatment in itself and my next steps without the frustration and swears (I hope)

Happy Sunday!!!