My lupus journey


Rituximab infusion | Cycle 2 dose 2 | 23.08.2018

Two weeks after my first dose of cycle 2, on the 23rd of August I went into hospital at 9:00am for the 2nd dose of cycle 2 of my rituximab infusion. Routine checks such as a doctor consultation, blood pressure and temperature checks were made. And I was feeling well enough to receive the medication so we went ahead with it. The first task was the most tricky one (not for me but for the nurses!) It was the task of getting a cannula in my near to non-existent veins! The second attempt was a success in the back of my hand.

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My lupus journey

What is inside my pink rucksack?

When I was given an option of which colour rucksack I wanted, obviously I chose the pink coloured one over the navy blue and black colours. I also asked for some wheels with it.

Inside the rucksack, I was to place something called a Total Parenteral Nutrition (TPN) bag and my Micrel Mini Rythmic™ PN+ pump. I was put on this after I spent 3 months in hospital post-surgery suffering from high-output which was depleting me of vital electrolytes from my system. TPN was replacing them just about at that time along with additional IVs of magnesium and potassium. I was constantly eating. The reason behind this was that I had a newly re-fashioned (yes, this is a medical term) ileostomy after an emergency admission which was literally pouring like a tap!

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My lupus journey

Systemic lupus erythematosus (SLE) diagnosis while going through my GCSE’s and moving onto college

Rewind back to 2011. I actually typed this post up on the 14th of July 2011; ever since it has been sitting on my memory stick. And now I know what to do with it!

I was at my final year at secondary school which meant the most important exams were taking place. This is the time I started getting my external symptoms which made it terribly hard for me to pay attention and concentrate on these exams. And to top that off I was getting snide marks and whispers about the rash on my face. I didn’t let it bother me because I knew I’d never see these people again once I left school!

An average 16-year-old would probably not have been through how much I have been through over the period of 2-3 months in terms of health that too at a critical time in every 16-year-olds life. The symptoms I experienced were: extremely bad fever, nasty cough, joint pain. I would collapse because I didn’t eat anything, I was anemic (a blood disorder in people with SLE, it is the lack of red blood cells or the presence of red blood cells that do not have enough oxygen carrying capacity due to a deficiency in iron or vitamins).

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The marshmallow test

Title: The marshmallow test

Author: Walter Mischel

Publisher: Penguin random house UK Corgi edition

Pages: 325

“Would you like one now or two later?”

Sounds alright to wait a little longer to get two in the end but this decision is not always easy for many people and they succumb to their temptations and go for the easiest option. Here a lack of self-control is shown.

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Prophetic medicine A-Z

Dill ● Sanūt 

Dill has a number of health benefits which include the following:

  • May help reduce menstrual cramps.
  • Helps reduce depression.
  • Lowers cholesterol.
  • May act as a natural bug repellent.
  • May treat epilepsy.
  • Provides a source of energy and aids in digestion through beneficial fatty acids.
  • Contains antimicrobial effects which have proven to be effective against several bacteria strains.
  • Protects against free radicals as it contains antioxidant molecules which attach themselves to oxidized molecules inside the body that would otherwise do damage.
  • Leaves of dill (anethum spp.) are used as a flavoring agent and also as carminative.
  • It yields an essential oil, which is considered stomachic and diuretic. Dill oil from the fruits is said to be highly medicinal.
  • It relieves flatulence.
  • It also helps in promoting the appetite and assists digestion.

Sanūt is prepared by blending senna powder with some honey mixed with ghee, as this is better than taking the senna by itself.

‘Abdullāh ibn Juzm narrates that the Prophet (صلى الله عليه وسلم) said: “Senna and dill are for you, there is a cure in these two for every disease except death.”

[A sound ḥadith recorded by at-Tirmidhi and Ibn Mājah]


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My lupus journey


Rituximab infusion | Cycle 2 dose 1 | 07.08.2018

The last time I had rituximab was in 2015; it really helped ease my symptoms but I haven’t really needed it until now, 3 years later. Recently I have developed the butterfly rash on my face, my joints and muscles are in pain occasionally and I’m loosing my hair in bunches. Last month I went to an outpatient appointment to see my rheumatologist who’d suggested I have another cycle of rituximab due to my lupus flaring up again.

I’m not one to accept whatever the doctors throw my way (I know better from previous experiences), I like to do my own research before agreeing especially with previous mistakes which I have to live with till this day. I like to take as little medication as possible, that’s why I was eager to come off my steroids but that didn’t work due to me having a flare up again. I’d had rituximab before and I’d done a lot of research on it plus I was fine with it so I agreed to have it again.

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Brain on fire

Imagine being misdiagnosed by the professionals and living with your deteriorating symptoms daily knowing full well the diagnosis you’ve been given is incorrect.

Sussanah Cahalan, a young lady residing in New York is living her dream life working as a New York post writer. She works with her boss Richard and co-worker Margo and has a partner named Stephen who is a sound producer. She has moved out of her parents house, who have split and her mother lives with her step dad. Sussanah lives in a flat on her own.

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My lupus journey

Kidney biopsy

On the 24th of March 2014, I received a phone call whilst at work to go to the hospital so they could carry out a kidney biopsy. I was called by my regular rheumatologist who explained I had been putting it off for too long now and my last set of bloods showed that my kidney function had declined by 30-40%. I was having regular blood tests done because I was taking mycophenolate to keep my symptoms under control which is an immunosuppressant. People who take immunosuppressant drugs need to have their bloods done regularly and monitored.

The kidney biopsy went ahead on the 25th March 2014; overnight I had a blood transfusion of two bottles. I had the kidney biopsy around after lunchtime; they wheeled me away into the procedure room on my bed when my dad had left after paying me a short visit.

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Prophetic medicine A-Z

Dates ● tamar

There are a large variety of dates:

  • Pressed dates (‘Ajwah)
  • Dried dates (tamar/burniy)
  • Unripe green dates (buṣr)
  • Fresh dates ( balaḥ)
  • Fresh/ ripe dates (ruṭab)

Dates contain sugar, fat, and proteins, as well as important vitamins. They are also rich in natural fibres. Dates contain a very high percentage of sugar (70-80%). It has both fructose and glucose, which have high caloric values. It is easily and quickly digestible and very beneficial to the brain. Dates contain 2.2% protein, vitamin A, vitamins B 2 and nicotinic acid (active against pellagra). It has traces of minerals needed for the body such as potassium, sodium, calcium, iron, manganese, and copper. The percentage of potassium has been found to be very effective for cases of haemorrhage, such as the occasions of birth or circumcision.

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