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

Moving in and moving on and miscarriage no 5

It would have been rude to refuse such a kind offer! I'm referring to my new boyfriend, Simons' insistence that I move in with him. 

I was so 'off' men that it wasn't even funny. My trust had got up and gone. But I figured that I had to make a choice. My housemates were moving back to their respective countries. So it was either recruit new housemates and live like a perennial Bridget Jones or bite the bullet and just do it.

The litmus test was my tabby cat, Starsky. She'd taken to Simon immediately so it was a real no-brainer. When my recent blind date from a dating website had gone wrong, Starsky had pooped in the corner of Cathy's room. Yes, Starsky was one very astute cat. And Starsky was a real lady and never pooped anywhere apart from the litter tray.

So that was that. Simon said, 'Go to work, I'll pack all your stuff up, hire a van. You just go to work as per usual and when you come home it's all done and I'll look after you and Starsky.' Too good to be true? No not at all. As I said previously, I'm still there 8 and a bit years on! I told Simon all about my Lupus. Did he bolt and run for the hills? No, he didn't. He was a man and said no problem I'm here to look after you and Starsky. And he did and he has. He is a rare diamond. I owe my remission to Simon. He has believed in me and that belief has led to some amazing things.

I can't lie though. There have been a few blips (all health related) and they have been bad but I can't tell it all at once. I'm a writer. We like to string the suspense out a bit!!!

And here comes the thing that cascaded the awful events that have happened to me.

Because I was nearly 40 and Simon was 43 we decided that we should try for a baby. It was something we had both been denied in our previous marriages. I knew it was risky and knowing what I know now would I have changed my mind. No, absolutely not.

I got pregnant easily and had the usual bleeding at 5-6 weeks that had characterised my previous pregnancies. The scans were A OK so I relaxed. Ten weeks came along and I was feeling amazing. I had an inner glow.

I had no reason to think anything would go wrong once I'd got to 12 weeks. I really thought I was home and dry. I went for my 12 week scan by myself as Simon was busy at work. Within minutes of getting on the examination couch I sensed something was badly wrong. My face had suddenly become very red that morning as well. There was no feral heart. The baby was dead. My blood pressure was sky high at 170/110. I was pre-eclamptic at 12 weeks. Holy F**K.

I screamed, I sobbed. The noises coming from my body were like a wounded wild animal. I was left to cry in a corridor for ages. There were no kind words, no tissue no comfort. Just awkwardness. The Dr was embarrassed. He didn't have a clue what to do with me or what to say. I'm a midwife and I've had to work with him since. Double awkward. Every time I see him I'm taken back to this day. It's still raw.

I was on Clexane and Aspirin and Prednisolone 20mg. It didn't make any difference. I was utterly bereft. Simon was really good. He was upset too. I knew then, that this was my very last chance. I was never going to become a mum.

My job involves helping mums and dads with their babies, helping them learn to sleep, feed and develop. It's confronting. I get asked, "Do you have children?" quite often. Mostly I reply, "Unfortunately it didn't happen for me. I'd have liked a few." It leaves my clients/parents feeling awkward. Some press the point and ask, "Why" or "What happened?" How do you package it up nicely and not make them feel awkward? Its difficult. I belong to a very big family. I have 21 cousins,  most have children, several. I've become very motivated with my career. It fills a big void in me. It's also why I write. It helps.

 

I've since asked an Obstetrician/Gynaecologist why it happened. She said it most likely my very unstable lupus. So not all of you will experience such a disaster. But some of you will. I think the Lupus together with the Antiphospholipid Antibodies/syndrome were the problem.

I'm now a mad cat lady. Some people say they're my children. I don't see it that way. Cats are lovely but they're not children. They're cats.

What every girl needs, a knight in shining armour!

You know when you're at rock bottom and you feel like shit. I'd survived my marriage break up but it had left a big toll on me. If you marry for love, which I did, you don't get to escape it unscathed. 

The thing that really got to me was my wedding vows.

For better for worse
In Sickness and in health...

Now I couldn't get my head around what gave my husband the right, to not cope with my Lupus and just walk away, because life just got that little bit tougher.

Yes I was mad. Hell yes. In fact furious doesn't even come close.

I vented, I ranted, I swore. This was all down the phone...at him. And no he didn't put the phone down on me! It was a strange case of self-flagellation. Hell it felt good, damned good. He kept saying that he deserved to hear all of this. So I let rip. I'm a writer. I have a lot of words. These were words I'd been saving up over 7 long years of marriage and 9 years together.

Once I'd been heard I knew I could move on. I felt validated.

The next step was to see my GP to organise some counselling. This stuff in my head had to go somewhere and keeping it inside was just toxic.
For a non-American I can thoroughly recommend a bit of therapy. I knew I had to keep myself functional to do my job, helping and supporting new mothers and their families.
I couldn't write at the time. I was just too screwed up. Now I write to keep myself ticking over. Its my regular MOT/ car service if you like!

The first thing the psychologist said was," You must never go back to him...NEVER...have you heard me?!"

I was stunned. But you know she was the wisest woman and I needed to hear those words. 

This was my first step to health.

Remove all toxins from your life. I was on the road...

So I kept up with 6 sessions of therapy. Kept at my day job. Moved 2 students into my rented house with the OK of the landlord. I had to sort the practicalities out like money too. Having nice people around and my lovely cat really gave me the mood shift I needed. Living alone was really the worst thing. And y'know sharing was ok. I got to choose my tenants and I can spot a crazy nut job at a thousand paces. I needed calm and a little bit of different.

Then I thought dating, shall I or shan't I? I was really nervous and managed to pick up a real dip-shit on my first attempt. Having dumped him once I realised, he became slightly psychotic/stalkerish and bombarded me with text messages. Oh I picked a 'right one'!!!

No more dating sites. 

Then on a night out, at a pub (The Clock Hotel) in Surry Hills, with my fellow housies there he was...across the room in the pokies!!! I kid you not. I was giving a big lecture on how bad these pokies were, how they were the scourge of modern Australian society. I was in total soapbox social worker mode! His mate had just put 5 x $50 in and had wedged the start button with a drinks coaster. And he blew all of it in seconds.

I'm not going to give his real name as he asked me not too! He's shy (not) in an Australian way. So I'll call him Hugh (as in Jackman)

or maybe Russell (as in Crowe)

or Simon (as in Baker). Oh too many hot Aussie man....I'm going with Simon :-)

Simon took me and my house mate, Kathy down to Bondi Beach for a day of sand, sea and surf.  I covered myself in Factor 50, slapped on a hat and had fun. 

The next week we had a date at the pictures and 2 months later I moved in to his apartment in Sydney. It was as easy as that. When things are right they just happen and we're here together 8 years on... Eight awesome years that have ridden the roller-coaster that is my life and Lupus. And today my life is good, awesome and amazing.

Yes I have my bad fibro days and I'm in pain every day. Some days better than others.

But I've learnt how to pace myself. Simon doesn't ask too much of me. He loves me writing, loves my cooking and basically loves every bit of crazy, eccentric me.

Don't give up on the Knight in Shining armour. You may find him where you least expect him just like I did.

See you back here real soon. Hope your week is good and your pain days are few <3 Sending hugs from OZ XX

My marriage break up & a knight in shining armour just around the corner...

Just when you think it can't get any worse! Ha famous last words...it does.

I'd started on Imuran (Azothiaprine) to try and blast my immune system into behaving itself. My life was in a toxic wilderness. My marriage was going downhill fast. My husband was so unsupportive it wasn't funny. The irony was that I was living in an emotionally abusive marriage and yet I was a nurse who empowered mothers who were going through the very same thing.

My writing was on hold. My headspace was all wrong and I had no spare spoons to do anything like write a book with.

I decided that the husband had to go. It was either do that and maybe live or keep him and maybe die. It was that bad.

Any marriage break up is awful, heartbreaking and destroys a little bit of your soul.

Little did I know what was to arrive around the corner.

When you've hit rock bottom the only way is up.

I had a great work colleague, Anna. She was a diamond. I kept all these things a secret from my other colleagues and my clients. They didn't need to know. I even kept my wedding band on my finger, removing it as soon as I left the office for the evening. I didn't need anyone asking me any difficult questions. It was hard enough keeping myself together to arrive at work and do my job. But without work I had no money and I had no family in OZ. I had no choice but to carry on.

I got so sick that my weight plummeted to 58KG which at 172cm is way too skinny.

My hair fell out. I had bald patches on my head. That was the thing I found the hardest. I'm a Leo. I have a mane. It's my crowning glory. Not now it wasn't...

One day I was doing a visit to weigh a new baby at a clients apartment. I'd got into the lift and gave my appearance the once over in the mirror. It was then that I saw a massive bald spot, shining in all its glory. I gasped in shock.

I bought scarves and headbands and tried the boho 60's/70's look. It helped but I still knew the bald spots were there.

Outside work I was just surviving. My bed was my favourite place and I'd started smoking...a lot. Probably one of the worst things I could do. I couldn't drink so it was my go to.

Eventually after a crappy Christmas and New Years Eve, spent alone and wallowing in my misery and cuddling my cat, Starsky. My cat was my life saver. She knew when I was sick and curled up on the couch and bed with me. We survived a 45C New Years Day on the couch/floor with a fan in front of us both shouting/moaning/miaowing as our thermostats had given up on us. Me because of my Reynauds', Starskys' because she has a lot of fur.

Little did I know then, but in February, a Knight in Shining armour would appear!

Refusing to take prednisolone (steroids) was one of my big mistakes

Hello again, nice to see you back here again. 

I hope you're all having a good week and you Lupies and Fibro people are all being extra kind to yourselves and getting some sleep.

As you know by now I'm a nurse. I have Lupus and Fibromyalgia and a heap of other diagnoses. I can't tell you all at once. It's way too big. Things that have happened to me belong in the rare basket. I've always been somewhat of a drama queen so it fits in with me!

BTW my mum is now reading my blog so must keep my potty mouth to a minimum. Teehee. Hello mum XX

As you may recall I was really sick and my ANA was 1:1280 on diagnosis. It doesn't get any worse than that. My sensible Rheumatologist advised me to start steroids to get my disease under control.

I refused point blank.

I'd seen my friend 'Janet' who also has Lupus and what high doses of steroids had done to her and I didn't want that to happen to me. D'oh that was a really stupid decision. I'm a very determined sort of girl. Some may call me stubborn! We don't always know what is best for us and I certainly didn't. I have improved at that since. Now I'm on first name terms with my local pharmacist. We know each other very well. I'm there several times a month. He sends me a Christmas Card.

I agreed to take a NSAID Celebrex (non steroidal anti inflammatory). It didn't do very much at all. Pain was a huge issue. My sleeping was badly affected. My disease escalated to such an extent that every time I rolled over in bed at night I would wake up. I couldn't lie on either hip or even on my front or back. I was a basket case.

We (me and my now ex husband) moved to Sydney for work. His job had ended with redundancy. I was the bread winner. I started working at a huge teaching hospital on Postnatal and Antenatal as a Midwife. And I wasn't sleeping.

I got sent to see the Occupational Health Doctor. He was amazing. He referred me to a Rheumatologist. I got an appointment within a week. He gave me pain killers...MS Contin 15mg SR to take twice a day. Yes this was morphine, a controlled drug. I had to take it to sleep. No other pain relief had any effect at all.

http://www.dailystrength.org/c/Lupus/forum/14267148-hip-bursitis-pain

I was horrified at my decline. I had steroid injections into my hips, both of them. They hurt like hell. But they fixed my bursitis. I've never experienced pain like it. Bursitis is hideous. My left knee was swollen and that knocked my hip out which created the inflammation of the hip socket.

http://www.lupus.org/answers/entry/joint-muscle-pain-in-lupus

I had to start steroids. My blood results were awful and I was told letting this disease take hold was disastrous. I was started on 20mg of oral prednisolone and not long after I was started on Immuran (Azothiaprine). It helped and my pain was slightly less but I still had very active disease.

It was about to turn very ugly and my life was really in the balance.