Hi,

 

 

 

I thought I’d take a little time to share my story with you.  My name is Lucy and next week I will be 33 years old.  I became pregnant at 17 and during pregnancy, a routine swob found me to have a relatively harmeless bacteria called straphylococcus aureus, it is here, I believe, that my journey with Wegener’s Granulomatosis began.

 

 

 

When my daughter was about 6 weeks old I developed a red eye, the doctor thought it was conjunctiveitus and gave me drops, the eye didn’t get any better and I had swelling aand pain in my face and head, so off I went to Lincoln Hospital!  Over the last 14 years my symptoms have varied, I have had episcleritus, scleritus, stomach pains and cramps (for which I was hospitalised with no diagnosis), terrible pain in my face and neck, arthritic pains, swollen glands, numerous chest, throat and ear infections, absesses, swelling to the face (put down to an allergy) and terrible cramps in my muscles- the list goes on!  I have seen immunologists, rhumatologists, opthalmologists, gynocologists and several GPs and A and E doctors, none of whom have known what to do with me- treating each symptom seperately to no avail!

 

 

 

For 14 years I have been passed from pillar to post, for the scleritis I was put on high dose steroids and Methotrexate but because they weren’t working I have been untreated for about 5 years, having high dose steroid injections when I’ve had a bad flare up.  This disese has dominated my life, all my pictures, from my daughter’s birthday parties, my graduation, family holidays etc, etc show me with red, bulging eyes.  I have hated the way I look since I was 18 years old, coupled with the pain and constant feeling of being unwell, I have, at times, felt like I was going mad, which has not been helped by the doctors who have dismissed my symptoms as vanity.

 

 

 

That said, I have carried on with life, I’ve never let it affect my work and have a good social life (athough I am now pleased to know why I’m such a lightweight and fall asleep so easily!).  I’m so glad to know what is wrong with me and to know that I am not a crazy, melodramatic lunatic and I am looking forward to getting my treatment plan sorted out.  I don’t think I will ever be able to live a ‘normal’ life with Wegener’s but I am definitely looking forward to less pain and fewer infections.  People ask me how I’m coping with my diagnosis, the truthful answer is I’ve been so ill for so long that only positives can come out of this.  My diagnosis is the start of a new page,one I can’t wait to turn!

The condition has had a huge impact on my life and I am keen to raise awareness.

Thanks for reading and any donations ;-)