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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Receive a good deed for every believing man and woman

The statement of the Prophet (صلى ألله عليه وسلم): Whoever seeks forgiveness for the male and female Muslims, he will receive for himself a good deed for each and every one of them.

Look! Whoever seeks forgiveness for the male Muslims and the female Muslims, he will receive for himself a good deed for each and every one of them!

 Do you know how many good deeds you will receive if you say in your supplication?!:
اللَّهُمَّ اغفِر لِلْمُسْلِمِينَ والْمُسْلِمَاتِ وَالمُؤمِنِينَ وَالمُؤمِنَاتِ، الأَحيَاءِ مِنهُم وَالأَموَاتِ
O Allah, forgive the male and female Muslims, and the male and female believers, the living and the deceased.

A phrase which is not even one line; how many good deeds will you receive?!
You will receive a good deed for every Muslim; millions of good deeds.
Then you supplicate for them to have guidance, firmness, assistance, success, and safety from trials and tribulations. If this supplication comes from your heart this is proof of the soundness of your heart and conscience for the welfare of your Muslim brother.

✒ Translator’s Note:
Below is another wording of the Hadith which has been declared Hassan by Shaykh Al Albani (رحمه ألله)

Ubaadah ibn Saamit (رضى ألله عنه) said:

“I heard the Prophet (صلى ألله عليه وسلم) say:

“Whoever seeks forgiveness for the male and female believers, Allah writes for him a good deed per male and female believer!”

[Collected by At Tabaraani in musnadush Shaamiyeen 3/234 hadeeth no# 2155 and declared Hasan by Shaykh Al Albaani in Saheeh al jaami’ 6026]

✒ Translated by Rasheed Ibn Estes Barbee (حفظه ألله)

Prophetic medicine A-Z

Eggs ● Baydha

The best of all eggs is a chicken’s egg. A soft-boiled egg is better than a hard boiled egg. In the egg, there is a perfect balance. An egg that tends to be hard boiled helps to expel gassy wind. The yolk tends to be hot, the white to be cold. The yolk makes the blood sanitary but is not nutritious.

The many benefits of an egg include:

  • Rubbing the face with the white of an egg soothes sunburn.
  • In a paste, it heals burns and prevents scarring.
  • It also relieves eye pains.
  • A soft-boiled egg is good for coughs, roughness in the chest, hoarseness, and haemorrhages. It produces plenty of thin chyme.
  • Eggs are a good food and, finally, they are an aphrodisiac. 

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Get your sh!t together

Title: Get your sh!t together

Author: Ruth Field

Publisher: Sphere

Pages: 223

Many of us think that we have our shizzle together, we’ve got a well paid job, extremely organised down to a tee and have a perfect marriage life; but have you really got your shizzle together?

Ruth says

“Get you sh!t together is all about doing what you choose to do to the best of your ability. Accepting that there is loss involved in every choice between things. We have to suck it up. Life is hard. It is meant to be hard.”

The well-groomed lady who has an organised diary, top of the range Mercedes and never fails to attend any appointments may have her shizzle less together than the lady who has stayed up all night cradling her baby and looks a mess, drives a 7-seater and is always usually late for appointments. As the saying goes, first appearances make an impression but the story behind closed doors is usually a different one. Never judge a book by its cover!

Overthinking, blaming circumstances and not doing anything in the first place is why many may feel they have their shizzle all over the place. Ruth explains how to manage these negative feelings by tackling one ‘shelf’ at a time and talks about the home as the starting point. The reason why the home is so important is because it is where you start your day from and where you return to at the end of the day. It must be tidy (every ones definition of tidy is different which is fine of course as long as it does not distract you from your main purpose which is to increase productivity and efficiency in your life).

Until you don’t get your place of living in order, your routine will remain in chaos. Another thing she says is leave your circumstances at the door. This is important. Excuses are tools of the incompetent!

She talks through so much more and the best bit is it is straight to the point, no waffling, just straight talking. The following is an extract taken from the book.

I AM SPECIAL AND UNIQUE. Really? I very much doubt it.

You are much the same as the next person, but what will make you stand out from the crowd is the level at which you are willing to strive to achieve your goals, the lengths to which you are willing to go to be the best, the extra miles you are willing to squeeze another hour out of the day, the kindness you will offer a stranger, the help you will give a neighbour, the tower of strength you will be to your family during the bad times. In short, the overall effort you are willing to put into your life.

I would highly recommend this book to be read by anyone who leads a hectic or busy lifestyle. In contrast, it is also an amazing read for those who feel like their life has arrived at a complete standstill. There is so much to take a way from this book including resources.

My lupus journey

The pain machine

Pain is a lonely place. . . I know. I’ve been there and back. People could only see the tears roll down my face and me clenching my fists while writhing in absolute agony.

Sleepless nights, endless painkillers, morphine, ketamine, the pain machine, fentanyl lollipops nothing would ever remove the pain completely.

The pain machine also known as a syringe driver was with me all the time giving me a steady dose of diamorphine. Entenox was something I’d become physically and psychologically addicted to. While sucking on the mouthpiece I’d watch the needle on the dial go from the green zone to red over a period of 12 hours, sometimes less. My heart would sink. If I dozed off then it would last me through the night. This is not those small cylinders that you get in the back of an ambulance. I’m talking about the big ones which are brought on a wheelie by a big and strong porter!

Eventually one day the doctor who saw me for the whole time I was on the gastroenterology ward casually came into my room explained to me that I was to stop taking the entenox due to it having affected my bones and the obvious answer from me was no! He took it away anyway and I broke down, started shouting profanities and thought I was going to die without it. I believed that was the only thing that was giving me relief from the pain and he’d taken it away from me. I wanted it back so bad. I became verbally abusive, bad-tempered and uncooperative when the staff came to help me as I was bed bound and unable to walk, they had to turn me in bed about 2-3 times a day plus help with everything else that you can imagine.

At that time the pain was meant to be. So without the Will of Allāh, there was nothing any human or I could do that would get rid of the excruciatingly disabling pain. At that time I just wanted to die.

Now I know no matter how hard times get a mu’min should never wish death upon themselves. Here I am today as I look back at that time that I fought through only by the permission of Allāh to see better days. Days that I apply the lessons learned. Not to sound big headed, I may have even mentioned this before, I don’t need to look far, I see myself as an inspiration for living through each day and night confined to a hospital bed, unable to do anything for myself for a whole 10 months. Just try and imagine that. Do you think you would be able to have the patience and willpower?


I didn’t either but I made it through. SubhānAllāh


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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