Today is my very first blog post that is all about me and my Lupus.
I am finally in remission from Lupus or its' other big medical name, SLE, in full it's Systemic Lupus Erythromatosus. It's a big name I know.
I've had it for 9 years and it's been 8 very shitty years as I'm sure other readers with Lupus will agree with!
But hey I'm alive and I'm very much here.
I had this little brainwave over the weekend about writing a book about my journey and how I finally got myself well and into remission. And yes I've been bad, really really sick. But I'll tell you more as I get to know you all. Never tell too much on a first date! Right!?
So who am I?
I'm Lena, I'm 47 years old but I look so much younger! Vain much? Hell yeah!
I'm living in inner city Sydney. I'm self employed. I have a very busy small business. I'm a nurse and midwife.
I write fiction and non fiction. I'm self published on Amazon and yes the main character has Lupus. You should always write about what you know right?
This is me on the left with my little Sis, Lesley. I'm a proud aunty to 4. my sister has 2 kids as does my brother. I have none. More on that later.
I write another blog, non fiction about parenting. This is me, on this blog, the real me. I get to really share on this blog. Oh I'm excited, very. Why I didn't do this before I don't know. It makes perfect sense.
As time goes on I'll tell you more about my Lupus, my meds, how I got diagnosed. The whole complicated journey. The bit I'm most looking forward to is giving you other Lupies and your family and friends hope that just maybe....you may end up here like me. Living a full life. Yes I have some restrictions but I always find a way around things. I think that's crucial.
I thought I'd put this photo on to give you all a laugh. This is me aged 2 years old. I was addicted to picking chickens up. It was always Chickens 0 Lena 1. Poor chucks. My Granddad was a farmer in the North of England, which is where I'm from. It's in South Cumbria. The Lake District.
I know how hard it is for you Lupies to feel positive most days. How badly you sleep. How much you hurt everywhere. How you think it will always be like this. I hear you all. I understand.
I've been in the very depths of despair. I've been in hospital too many times. I'm trying my best to keep out of there this year.
Yes I take a heap of pills but a lot less than a year ago and much less than 4 years ago. I've been on as much as 50mg prednisolone. Today I take 1mg. One measly mg. I know I'm lucky.
For several years photos were banned. My face was like a belisha beacon. I know belisha beacon's are yellow but I'm a writer and so I'm allowed poetic licence!
Those of you from England will know what I mean!
But you get the idea. It was very very round and very very red and I was rather overweight because of all the steroids. My weight has ranged from 58kg at my sickest to 90kg here, again also at my sickest. Neither a great place to be.
I told you I'm vain, very. I'm a Leo. My hair fell out when I was very sick. That for me was the worst thing. I'm on oral Methotrexate 20mg which I take weekly. I believe it's saved me. No I don't like taking it but we don't always like what is good for us do we? I'm no exception.
I'm so looking forward to sharing my story with you and helping you all achieve wellness. That's why I'm writing this. I believe in sharing and helping. I'm a nurse, remember! We can't help ourselves!!!
So I think that will do for today. Please share your stories and feel free to ask me any questions. I'm hoping this blog will help all you Lupies out there. I know there's a lot of us and we keep ourselves very quiet. I'm hoping to raise our profile and get us more help and support. Us writers are good at that.
Hope your week goes well and check in here again soon. I'm hoping to do 2 - 3 blog posts a week, Monday, Wednesday and Friday.
lenathompson.net
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