LUPUS AWARENESS DAY

10 May

I have made friends & lost friends because of it.

I have had the best experiences in life because of it & the worst because of it.

I lost my late childhood & my teens to it, but I gained in my adulthood from missing out to it.

It has made me the person I am today, but yet I will not let it define me.

It is my silence while I scream.

It is invisible but active.

It’s what makes me find the good in each day.

I Live with the Wolf
I Live with SLE Lupus

May 10th is Lupus Awareness Day

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I do not intend to discuss my illnesses on my blog frequently but today is a day for people to be made aware that there are people suffering with silent illnesses.

So I ask you never “JUDGE A BOOK BY ITS COVER”

Lupus is an Autoimmune disease it is not contagious.
It is not always visible, you can look incredible well but your body is screaming on the inside.

In whats called a flare up people with Lupus, white blood cell antibodies (the ones that protect us by fighting bacteria and all the nasties in everyones bodies) go wild and over produce themselves which can lead to all sorts of problems for the Lupus patient.
In a Lupus patient these helpful little white blood cells (antigens) end up over excited and become unhelpful, confused and wage war on a Lupus suffers own body, kind of ‘friendly fire’ on mass.
Lupus suffers have lots of daily issues and ‘flare up’ issues, these can range from ulcers & migraines to organ damage & sometimes even death.

I am no Doctor and it’s the professionals who should explain what Lupus is all about the lay persons personal opinions about the medical facts aren’t always correct.

Ive always found Lupus UK & St Thomas’s Hospital Lupus pages the best.

That’s not to say that what other people who write about Lupus and how they are suffering is not true. All of us suffer in different ways and it comes as a relief to hear others voice your woes; but one thing you will here all of us say is about the frustration at how invisible our illness is and how much we suffer in silence. May 10th is to make people aware and break the silence.

I was 13 when I had my first flare up not that it was known then; I have been told this was young, it’s most common in certain age brackets and ethnic groups and I fell into neither.
I was told for the next 6 years it was growing pains.
My schooling, who I was, what I could do, all affected. My whole teenage years full of excuses some took them, some didn’t, people come and go you learn later in life but all these things are important when your a teenager, it’s all about fitting in.

At 19 I’d left college and was working 40 hours a week in a Pharmacy, studying to be a Pharmacy Technician and running my own home.
I broke, I couldn’t keep awake at work, I was depressed more than ever, crying all the time with desperation at life… And one day a Doctors appointment changed all that, it gave what I was feeling a name and a specialist; who looks after me so well.
It didn’t solve it and I’ve been through Highs and Lows but at least it was real.

People only see me on my best days, as on my worst you will find me in bed. They don’t fully understand but that’s ok, I don’t fully understand everything either; but I do have a thirst for knowledge and want to be a better person by trying to understand as much as possible and if not understand at least have compassion for others and I would ask of you to be the same.
Think about a time you were hurt, upset & frustrated at feeling something that you felt no one could help with, no one understood, and imagine living that on a daily basis.

I’m not going to bore you with the next *cough* years of my life…
But at present day I am a SLE Lupus suffer, who has Sjorgens Syndrome, Fibromyalgia/Chronic Myofascial Pain & Coelics Disease. (Mr S sums it up as “what haven’t you got” haha).

But what I also have is a Wonderful Man & Family, a Lovely Home & a Great Life, I am so fortunate.
I’m looking forward to having a family with any luck and facing my next challenge.

Please if you get the time have a look at what Lupus is about these websites are a good place to start.

Lupus UK

St Thomas’s Hospital

What am I doing today you ask, well I am living my normal day and coincidentally I am off to get my bloods done as I have a specialist appointment in a week. But on my merry way I will be tweeting & telling anyone who will listen it is May 10th Lupus Awareness Day.

TTFN

S

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*The Pictures in this post are from The Lupus Foundation of America & Lupus UK *

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2 Responses to “LUPUS AWARENESS DAY”

  1. rowenamaxwell Sat 18 May 2013 at 9:31 am #

    Thanks for sharing some insights into Lupus.
    Row

    • Serotiny Sat 18 May 2013 at 11:00 am #

      Thank you for reading Row x

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