Team Alice!
We are friends and family of Alice and we are taking part in numerous events to support Alice and The Hibbs Lupus Trust. This charity has been so supportive during Alice's diagnosis and fight against Lupus.
On the 24th July, we are taking part in a 5km colour run in Northampton. Bring on the paint.
On the 4th September, we are taking part in the 10km Wolf Run. Woods, Obsticles, Lakes and Fields....Wild Running.
Here's Alice's story of the past 3 1/2 years.
My experience with lupus has been a whirlwind. I had never heard of lupus until 2013. I was a sports coach and a full time special needs teaching assistant.
6 months after the best day of my life, my wedding day, our lives turned inside out.
November 2013, I had my first real flare and that was scary. I woke up at 6.30am and felt fine, went back to sleep for half an hour, then woke up with the alarm, I couldn’t move. I was so frightened.
On the 2nd January 2014 I was diagnosed with lupus and Sjogren’s syndrome. Phew! I had a diagnosis.
Now into my third year of lupus, I’m still on steroids, I’ve been on 3 immuno-suppresers, mycophenolate mofetil, Azathioprine and methotrexate . These didn't work, I'm now waiting for flare so I can go on more intensive medication.
I still have bad flares where I’m bed ridden. I have to be fed, washed, dressed and toileted because of my lack of movement. During these flares, I take a mixture of pain relief, from tramadol, to gabapentin to oramorph.
I am also suffering from side effects from the medications. I've put 3 stone on, my face has turned into a moon, I couldn’t recognise myself in the mirror (I still can’t), my hair falls out in clumps and I itch all over. The joys of lupus!
When I was first diagnosed I sought out support. I found The Hibbs Lupus Trust and LupusChat on twitter. Both of these have been fantastic support. I’ve gained knowledge, shared experiences and found people who understand. This has been invaluable to me.
I describe lupus as being like the Tazmanian Devil. It comes into your life with no warning, causing mess and destruction that you are left to sort out.
Thanks for taking the time to visit my JustGiving page.
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