First Blog! – My Lupus Story

Hi Guys,

This has pretty much been a long time coming, I’ve decided to start writing a Blog!

For those of you who don’t know me, my name is Rachel and I have been diagnosed with Lupus. I was diagnosed 2 months after my 21st birthday in February 2010 with Systemic Lupus Erythematosus (SLE), Discoid Lupus (Affects skin and hair) and less than two years later was also diagnosed with Lupus Nephritis (Affects the kidneys).

No it doesn’t run my family and No I hadn’t heard of lupus before.

I was around 19 years old when I started feeling different. I would go on a night out with friends and the next day my joints would be stiff or swollen. I started eating less, I had no appetite and I was losing weight without trying. My hair started falling out and I was tired, like all of the time! As my symptoms got worse I saw different Doctors who had all different reasons for my joint pain; my birth control weren’t agreeing with me, my diet, not getting enough rest, drinking and partying too much! I heard it all. One day after searching online, I diagnosed myself with Rheumatoid Arthritis and marched straight into my Dr office and told them and you know what? They agreed. No tests, they just said ok and put me on medication. Of course it didn’t work.

I then started getting rashes all over my arms and legs and chest and at first I thought I was allergic to something but as it got worse again I went to the Dr who told me it was Eczema. Eczema! I had never had it in my life and the Dr said, “you must have but don’t remember”, so gave me a cream for dry skin and that was that.

Things got worse after my 21st, I had a huge party and couldn’t move for 3 days afterwards as I was swollen all over. By then I had had countless infections including urine, ulcers, tooth infections. I looked terrible, I had to take a break out of uni during my final year, I wasn’t working, no motivation, no sex drive. I was miserable.

One day the Dr invited me in for a chat and explained to me that after looking at some of my blood results they think it may not actually be Arthritis, erm no sh*t Sherlock! They wanted to refer me to the rheumatologist at the local hospital. However I would have to wait roughly 6 weeks, at the same time as he was speaking, my mother called me and I told her what he said. Straight away she booked me in with a private hospital that same night to see a rheumatologist and in 40 minutes, yes 40 minutes, I was diagnosed with SLE and admitted in to hospital that same night.

It took over 2 years for me to be diagnosed and I was only diagnosed so easily because by then I had so many different symptoms. Whilst I was relived, I was scared this was new to me. I looked up Lupus and read about miscarriages, organ failure…..death. I’m a firm believer in prayer but at this point, prayer just seem worthless.

Since being diagnosed with Lupus I have taken, steroids (prednisolone), Hydoroxychloroquine plaquenil, ibuprofen, co-codamol, tramadol, azathriopine, mycophenolate mofetil, asprin, Rituximab and methotrexate. I’ve also had B12 shots, taken iron tablets and I take Vitamin D and Calcium. I am now only on some if these but I’ll save my medication journey for another blog.

What I want to say is now 5 years on from being diagnosed, I graduated with a 2:1 degree in English Literature and Creative Writing, I have a full time job as a Employment Advisor for a large charity, and I support long term unemployed people into work. I married the love of my life in 2013 and I’m in the mist of purchasing my first house. I battle with Lupus still and but I live and I actually live a good life. I feel a lot better now and I want to share how I do it and connect with others who go through anything tough.

There’s a way to live you life and be happy.

Thanks for reading.

Rachel

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