Another year on and I've hit a speedhump :-(

Hello blog, my long lost friend. I've missed you longtime girlfriend :-)

I've not visited this blog for a year as my business world went mental. As a result I've hit a speedhump and had a blip with my lupus. Grrrr severe gnashing of teeth follows. Oh it gets me so cross. It sneaks up behind me and gives me a bite on the bottom just to remind me it's still there.

Oh I feel much better for that giant ROAR. 

So what has happened this past year? I've just self published my 2nd non-fiction book. Not a mean feat I know. Slightly over achieving. Bahahaha

Health wise there has been the usual mini drama's but nothing I felt like sharing till now! The sacro-iliac pain improved as did my ability to put my own socks and knickers on!! Thank goodness. It got so bad at one point that every time I turned over in bed I was shouting out in pain. Following a sub-total hysterectomy things dramatically improved. I've never been so happy to have a body part removed. I was really frightened of a major meltdown and it never happened. Somehow making that decision, and in the end I forced it because life was so intolerable, helped me move on from the what ifs of children to a whole new chapter. I was able now to pursue other things in my life. I actually feel liberated. Doesn't life surprise you at times?

Then next came the wisdom teeth...I'm still shuddering at that one. I got an infection post op and it was the single worst thing that has ever happened to me. No kidding. Those of you who have read my previous blogs will know that what I'm saying is BIG. However I have survived. For 3 months it was pureed food. Revolting. That experience has taught me nothing good. And I paid a freakin' fortune, went private and trusted the oral surgeon with my life. 

Anyway I must move on. It's not healthy to dwell on negative experiences.

So where am I now? I'm off to the UK in a few weeks and it's the big birthday and I'd like to go back well if I can. So I've got a decision to make. Do I go on Methotrexate or tough it out? I think I'll do a blood test first and see how bad things are. 

Oh lupus you are so mean and not a good friend but somehow you keep hanging around even when I've unfriended you.

But hell I'm ALIVE and being alive is good fun. For a girl with such a badly behaved form of lupus I've even surprised myself. 

I've gone from this 8 years ago....

To this just recently

Remission...how good does it feel!?!!

Well hello and a big Aussie G'day to you all. I hope you've all had a great week.

I'm fast forwarding from my last post nearly 3 years. Yes it's been 3 years since the brain haemorrhage. Amazing. A lot has happened in that time and you'd never know by looking at me that I'd been through all this health debacles with Lupus. I always say that whatever doesn't kill you makes you stronger!

I know how hard those bad days are. I remember saying things like, 'Dying must be easier than this!!!' The pain I was in with my gut vasculitis really drove me to the edge of what I could deal with. It was bad, very bad.

But then I'm in remission now. It feels like such a long way away that all that bad shit was happening.

I hit remission over a year ago now. It feels great but I'm not getting above myself. It could come back. Lupus is a chronic autoimmune disease. There is no cure. You live with it every day.

This is me on the left, taken a month ago on my birthday. I'd hit the big 48!!!

I went to see my Rheumy the other day. BTW don't you just HATE Drs appointments. It's a reminder that you are on a knife edge and it could happen again. I had a flu vaccine in May this year and OMG was I ill for 2 weeks. It was like I was having a flare again. It was so damned scary. I had a headache that was nearly as bad as the brain haemorrhage for 2 days. Nothing relieved it. It was like encephalitis. I was photophobic. The joint pain came back. I was in bed and had no energy. Then it just went. My liver function tests have been really up and down for 3 months. The option of stopping Methotrexate came up because my CRP and ESR are normal which means no active disease. I'm not brave enough to stop it yet. Some of you will understand that. I hate the chemo drug I really do but when you've been soooo sick you don't want to risk it either! Arrrggghhh!!! I drive myself mad at times! Maybe soon. Its crazy I've gone from the no drugs at all mindset to the security blanket of them!!!

In my work life I'm such a risk taker. I run my own business. I'm ridiculously busy and I'm writing 2 books. Yes I'm not content with doing one book at a time!!! When you love writing it seems very sensible to write 2 books and and 2 blogs.

Today I'm having a lazy Sunday. I'm still not dressed and it's nearly midday. That's how I balance my life out. I'm lucky that my 2 cats are fairly undemanding. Simon my partner lets me do my thing and I write.

Life is good...

How many pills!??!!! Too bl%&*y many

G'day, you're back again. Hello and welcome. I hope your week has been kind to you and you've been kind to yourselves :-)

I'm sure at some point you've all found yourselves going, 'how many pills?!!' I know I have. And you know when you take too many pills that you are on first name terms and christmas card lists with your pharmacist!!! LOL.

One of my most hated tasks each week is the pill dispenser. Putting all those little pills into each day slot. Then there's the multi's vitamins and fish oil capsules etc. You'd think as a nurse I'd of sort of embraced it by now?! Nah, not one bit. But I do it and I pop those pills and just get on with it.

I'm on a lot less now. There's some I'll never come off. Here's my little list:

Pariet (Rabeprazole) 40mg for gastritis and reflux
Nizatidine (Tazac, Axid and Nizac) 150mg again for reflux at night time
Plaquenil 200mg daily
Folic Acid 5g the day after my lovely chemo drug, Methotrexate
Methotrexate 20mg once a week. I've been told I'll NEVER come off this. Boohoo. It makes me feel so nauseous the morning after I've taken it. But its suck it up girlfriend and stop moaning.
Endep (Amitryptilline) 50mg at night for Fibromyalgia
Herbal sleepers - Valerian and Tranquil Night from Blackmores
Panadeine Forte as needed each day, can't sleep without it

You don't realise how big your list is until you catch your family watching you taking your pills. My dad takes a pill a day for cholesterol/BP. My mum takes nothing. I was sleeping in the same bed as my sister for 3 weeks a few years ago, when I went home to England, and I kept waking her up when I took my panadeine forte, scrunching the aluminium foil pill packets!!!! How naughty!

I think us Lupies are very organised. You have to be. Drs appointments, keeping on top of your scripts, the pill stash (now in a much larger box) and doling out the pills into the weekly dispenser.

I'm sure many of you get very bored with the pills but we know how important they are to keeping us alive and well. I'm over the resistance stage and I'm at acceptance. I used to be the sort of girl who would resist a paracetamol for a headache. I look at my stash now and can hardly remember that girl. I fought the steroids and the chemo drugs. Once I gave in and admitted defeat and took them and looked at my life I started to get better. It has been a long long road. I'm there...in remission...and I'm praying that I stay there. Every little joint ache and twinge makes you aware that you can't take remission for granted. Its a lifestyle thing and I'm so very careful.

BTW I'm back to my writing and thats a big part of who I am and why I'm well.

Have a good week and I hope your pain days are few and your good sleeps are many XX

How writing saved me from Lupus

G'day again, you're back. Hello, its so nice to see you. You're going to love todays blog. And I'm giving something away for FREE. 

I'm going to take you forward 3 years after all of that yuk stuff. Theres a lot of fun stuff in my life and probably more fun than not. I'm a glass is half full girl :-)

I had started writing a few years ago but got derailed by my lupus. When I'm in active disease I lose all my creativity. Just getting out of bed each day is a big ask.

Then I landed well and truly on my arse. I walked out of my job. It was either the job is going to kill me or I have to walk away. I was a nurse working in outreach, visiting child protection cases and clients with severe mental health issues. I'd had one bad child protection situation too many and I was done. Burnt out, spat out and i was empty.

So I had no choice but do 7 MONTHS of bed rest. Yes holy moly. Seven freakin' months!!! I'm very much a busy busy busy doing everything all at once girl. So for me to have to take 7 months off just freaked me. I had no money. I had no prospects but I had Simon and we had love. And I still had a brain and a mouth.

I was exercising and going to hydrotherapy twice a week. However it was the balance in my life and getting the toxic stress out of my body, through the words making their way onto the page, that made all the difference.

I belonged to a writing group of whom 2/3rds were published authors. They'd all been to Uni and done a creative writing course. I learned so much from them. They encouraged me and have made me the writer I am today.

I went to the cinema 3-4 times a week. I totally indulged my creative side. 

I had 2 cats, Tabitha & Trim who sat at my feet on the bed. It was the only place I was comfy. Pain was a big issue. I had fibromyalgia by now and was on Endep. I'd had bursitis in my hips so many times that I was walking like an old lady. Sleep was a nightmare.

So I put my laptop on my knees and put pillows all around me and I wrote furiously. And within 3 months I had written a book. A work of  adult fiction. It was loosely based on some critical incidents at work. I'd set it in Sydney. My main character has Lupus. Don't they always say to write about what you know?!! It's a Psychological thriller with some voodoo/occult themes. Yes its dark but it's true to life. You'll like the lupus bits. I really go for it, no holds barred.

I've already sold many copies on Amazon which has totally amazed me. It's now available again for FREE to download and read. You don't need a kindle. All you do is download the Kindle App onto your PC, iPad or whatever electronic device you use. And it's on special offer for the next 5 days including today.

http://www.amazon.com.au/The-Shaken-Cradle-Lena-Thompson-ebook/dp/B00G8TQCYU/ref=sr_1_1?ie=UTF8&qid=1400395493&sr=8-1&keywords=the+shaken+cradle

All I ask is that you leave me a review once you've read it. Thank you so much. It means so much. Please share this post onto Facebook, your other social groups, Pinterest, Twitter etc. 

But most of all I want all you Lupies out there to realise that anything is possible. You can do it too. And I must add a caveat that I know will make you gasp!!! Two thirds of the way through my book I had a MASSIVE BRAIN HAEMORRHAGE!!! Yes, really. It was the biggest they've seen with no deficit. I really am the cat with nine lives.

Enjoy reading the Shaken Cradle by Lena Thompson and I'll see you all again real soon XX 

Starting on Azothiaprine and a disease spiralling out of control (SLE)

Hello there, you're back. It's really nice to see you. 

Many of you will be able to relate to a disease that spirals out of control. It seems to gather a momentum all of its own. Every time you go and see your Immunologist/Rheumatologist etc. the news isn't just bad its horrendous. 

This was my reality.

By blood results were going bonkers. I had gut or mesenteric vasculitis now. This is an extremely rare diagnosis and only 1-2% of people with Lupus (SLE) develop this condition. It affects the small intestine and colon and can lead to the gut infracting and necrosing (going black from loss of blood supply) and dying. EEEeekkkk! Its important to remember that I do have the blood clotting disorder, anti-phospholipid syndrome and I have had vasculitis of my peripheries before. Thats what started first before i got diagnosed (see my first few blogs). 

http://goo.gl/wFGV1Z

I started off with gastro-oesophageal reflux disease (GORD) and I'm told that most people with lupus will develop this. I had tried the sleeping in bed with 5 pillows and it felt like I was having something crushing my chest. The pain was awful. I had a scope up both ends. Lovely...not.

They confirmed GORD, acute gastritis and gut vasculitis. A diet of pills followed - Pariet, the maximum dosage of 60mg and Nizatidine 150mgs. It improved within a few days. I'm still on all these pills 8 years later. It's better but if I miss a dose I live to regret it severely. It's that finally tuned. I'm unable to eat rich or spicy foods as well and I've had the occasional 'choke' incident. It's something that must come with the territory.

My gut doesn't like certain foods and I spent 3 months on an elimination diet, eating baby rice and pear, and chicken congee.

I know that lupus and some foods don't get along but we're all different so finding your thing that upsets your tummy is so important. It may be the thing that keeps you well and may help you achieve remission. I don't eat any cows milk products, I'm extremely lactose intolerant. I know that when my disease was very active I was more sensitive than usual to certain foods. Some people call it a leaky gut.

http://leakygutresearch.com/lupus-leaky-gut/

I can't eat kiwi fruit, anything acidic - raw tomatoes, fresh pineapple. These foods burn the skin on my hands causing inflammation/eczema. It makes me realise what they are probably doing to my insides. I cook a lot of my own meals and rarely get a takeaway. I eat cautiously. For a foodie its really quite ironic.

I'm sure many of you can relate to a lot of these things.

I have confirmed latex allergy since 14 years old. All the foods that I'm sensitive too/intolerant are related to latex. I can make sense of it all now. After a while you learn to manage your life and our diet.

The next drug I got put on was Imuran/Azothiaprine to try and make my immune system behave itself.

The gut vasculitis was so bad that I was having attacks of severe watery diarrhoea in the mornings. I was waking up and rushing to the toilet and screaming out in utter agony. I'd go to the loo and the pain would temporarily go. Then I would go backwards and forwards to the loo about 15 times before I could leave the house for work.

I quite often was screaming and writhing on the bathroom floor. This continued for about 2-3 months. It was literally hell. I know Lupus is painful but this was a new level of pain that I was encountering. Trying to leave the house, timing it so I could get on the bus and not collapse in pain. It was a very delicately timed thing. I'd get to the bus stop and many mornings I would have to return several times. I really don't know how I kept working through all of this. I felt like I was becoming a total basket case.

Recently I found a book that helped me cope when it reappeared. The Patient. Ben Watt of the awesome band, Everything But The Girl had experienced gut vasculitis with another auto-immune disease. I read it and loved it. I felt understood. I wasn't bonkers after all. 

http://goo.gl/IkKhj0

Imuran didn't touch it and my steroids increased to 50mg. Still nothing apart from weight gain and a moon face. Next it was Methotreaxte 20mgs orally once a week. I knew enough about it having worked as a nurse with chemo patients. I wasn't keen but I had no choice. It literally was life or death.

I'd rather live. It was quite miraculous, the pain went, the diarrhoea went. I was told that I'd never be allowed to come off Methotreaxte. It was never going to happen. I've since had another flare of gut vasculitis just over a year ago. It was a scary reminder of what was around the corner if I didn't take control of my life.

So I did something for me. I set my own business up and I now work for myself. Despite how busy I am, I love it and it inspires me. I'm my own boss. I set my hours. I balance my week out. I write most days. I do a lot of social media for my business. Really I've found my perfect world. It was the key to it all really.

Achieving balance and so wellness followed.

I'm constantly looking at this balance and i keep a close eye on how much sleep I'm getting. So far so good :-)

I'm wishing you all a great week and may your bad days be few. Till next time XX Mwah Mwah