Team Alice
Alice Pointer is raising money for The Hibbs Lupus Trust
Story
Team Alice!
We are friends and family of Alice and we are taking part in numerous events throughout the year to support Alice and The Hibbs Lupus Trust. This charity has been so supportive during Alice's diagnosis and fight against Lupus.
* Walking for Lupus
* 2 Castles Run
* UK Open Water Swims
* Summer Wolf Run
* Great North Run
* Pub Games Night
* 12 Hour Cycle Challenge with SWEAT
* Barn Dance and Auction
Here's Alice's story of the past few years.
My experience with lupus has been a whirlwind and at times mine and my family's lives has been hell. 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.
After surviving meningitis, a blood clot on my lung, sepsis and double pneumonia Christmas 2012, my body thought I needed more of a challenge.
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 on more intensive medication, Rituximab, which has killed all the cells in my immune system.
On a daily basis, I am in some kind of pain, although the severity of this can vary. As can where the pain is in my body. On a good day, I can lead a fairly normal life. On a bad day, I can't move and I'm bed ridden. Someone has to feed me, wash me and basically cater for my every need. And then there's the in between days! I ache, I push myself to far, I limp around work as I don't want to let people down.
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. The Hibbs Lupus Trust, has provided me with the opportunity to meet other people in a similar situation. We share stories, support each other and have support meetings with guest speakers; consultants, physios, ot's and alternative therapies. 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.
Thank you for supporting The Hibbs Lupus Trust.
We’re a group of volunteers on a mission to raise awareness of lupus. We support people affected by lupus to make sure that no one faces lupus alone.
Lupus is a chronic and presently incurable illness of the immune system. Rather than just fighting viruses, bacteria and infection by producing antibodies, your body starts to attack and destroy healthy cells, tissues and organs.
We are friends and family of Alice and we are taking part in numerous events throughout the year to support Alice and The Hibbs Lupus Trust. This charity has been so supportive during Alice's diagnosis and fight against Lupus.
* Walking for Lupus
* 2 Castles Run
* UK Open Water Swims
* Summer Wolf Run
* Great North Run
* Pub Games Night
* 12 Hour Cycle Challenge with SWEAT
* Barn Dance and Auction
Here's Alice's story of the past few years.
My experience with lupus has been a whirlwind and at times mine and my family's lives has been hell. 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.
After surviving meningitis, a blood clot on my lung, sepsis and double pneumonia Christmas 2012, my body thought I needed more of a challenge.
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 on more intensive medication, Rituximab, which has killed all the cells in my immune system.
On a daily basis, I am in some kind of pain, although the severity of this can vary. As can where the pain is in my body. On a good day, I can lead a fairly normal life. On a bad day, I can't move and I'm bed ridden. Someone has to feed me, wash me and basically cater for my every need. And then there's the in between days! I ache, I push myself to far, I limp around work as I don't want to let people down.
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. The Hibbs Lupus Trust, has provided me with the opportunity to meet other people in a similar situation. We share stories, support each other and have support meetings with guest speakers; consultants, physios, ot's and alternative therapies. 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.
Thank you for supporting The Hibbs Lupus Trust.
We’re a group of volunteers on a mission to raise awareness of lupus. We support people affected by lupus to make sure that no one faces lupus alone.
Lupus is a chronic and presently incurable illness of the immune system. Rather than just fighting viruses, bacteria and infection by producing antibodies, your body starts to attack and destroy healthy cells, tissues and organs.