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...

I was staring down the barrel at brain surgery and I preferred the idea of being shot thank you very much!

I'm back, oh yes. You can't keep a good girl down. So as I was telling you in my last blog post I'd had a massive brain haemorrhage.

Why it happened I'll never really know. It has been attributed to the fact I was on Plavix a blood thinner like aspirin but works a bit differently. I'd been to the allergy clinic and told that aspirin wasn't helpful to my gut so I needed to change meds. It made sense as aspirin was probably eroding my stomach wall and I do have reflux and gastritis.

So I fixed my food intolerances but had a brain haemorrhage...just great!!!

The day for neurosurgery had arrived and I was booked in for burr holes in my skull. For those of you who are not medical it may be a bit yukky/squeamish. It's basically where you drill 2 holes in the side of your head to relieve pressure and bleeding. I know it's pretty vile. don't think about it too much or for too long!

I got changed into my hospital theatre gown and felt like doing a runner. It was one of those moments where you think shall I? I looked at the hole in the ceiling and wondered if I should climb on through that hole and 'do one'? I've never wanted to run away so much ever in my life. The sensible part of my brain said 'no Karen you really have to do this. It's a case of do and live or don't and die. No choice at all really.'

So it was with a heavy heart that I arrived in the anaesthetic room and jumped up on the theatre bed. The anaesthetists wired my head up to an EEG. It's a special machine that monitors brain waves and tells the doctors if you're properly anaesthetised or not. It was the first time they'd used it. Gulp...

We discussed my hair and how much I liked it and please could they save it as much as possible. They talked about pigtails and plaits. It was quite funny really, surreal even. I was in an operating theatre and we were discussing hairstyles!!! It's the black sense of humour that I just love about the medical world. They dripped me and I got some good drugs and next thing I was out cold into the world of the unconscious. I actually look forward to having an anaesthetic and I've had a few in my life.

Next thing I'm awake. Zing and sat upright in recovery. I made my other half Simon come and see me. I felt unless I saw him I wouldn't know that I'd survived. Poor Simon, he hates hospitals and hates blood. I spent 24 hours in Neurosurgery ICU and was in the same bed as a famous Aussie author had been the week before. How cool is that?!

My mum flew over from England with my sister in law not knowing if I'd be OK or not. How scary. I was dressed, all drips and monitors removed and talking. Amazing. They walked in and it was as though nothing had happened except for the 4 inch scars on my skull and a tiny section of shaved hair and a hairstyle like A Flock of Seagulls!

I had the best 2 weeks after hospital. I took my mum and sister in law around all my favourite coffee shops in Sydney.

Sam drove as I was banned from driving for a month until my review. I can understand. It really takes it out of you. My brain haemorrhage had been so bad that it took 2 hours for my right hemisphere to re-inflate!!!

I can look back now though and thank my lucky stars. I'm definitely one of the very lucky ones. I escaped with all my faculties intact.
I now think...whatever doesn't kill me will make me stronger!!! And it does.

What happened after my brain haemorrhage???

I know I said that I'd write 'next week' and today is just over 2 weeks!!! Actually I think 2 months may have gone by even!?! 
Maths has never been my thing. I'm busy building an empire at the moment and it's going mental. I'm a baby sleep and toddler guru. This blog allows me to vent, my other blog is all about baby and toddler stuff.  I think it's good keeping my 2 worlds separate.

If my clients knew I'd had a brain haemorrhage or any of this other stuff I don't think I'd be as busy or successful. Isn't it interesting that once we share our Lupus stuff people change their perception of you. That's what happened with the ex-husband. 

http://loopylena.blogspot.com.au/2014/04/what-every-girl-needs-knight-in-shining.html

Have any of you had that experience??? I'm sure that you have. It's hard enough dealing with our own shit without other peoples emotions. 

Here is the final instalment of the brain haemorrhage blog I wrote last! It deserves to be completed. 

http://loopylena.blogspot.com.au/2014/06/blowing-gasket-aka-brain-haemorrhage.html

I'd had a MASSIVE subdural haemorrhage. They thought it was caused by me being on Plavix and my anti phospholipid syndrome. Ironically I'd gone onto Plavix at the advice of the allergy clinic as the aspirin was 'rotting' my stomach. I had gastritis and reflux off the Richter scale despite the meds. My intolerances/allergies were all identified and I was feeling much better avoiding lactose, tropical fruit, raw tomatoes. I have latex allergy so the foods all fitted with that issue.

I spent 5 days in hospital on oral Dexamethasone (a steroid) to shrink the blood clot. My neuro-obs were not good. I didn't even know who the prime minister was! I replied....Barack Obama....a few minutes later...Kevin Rudd...a few minutes later...no, Julia Gillard, she deposed Kevin. I knew I was in deep trouble. I had lost my mind! ps these are Australian prime ministers and politics. I live in OZ.

The weekend loomed large and what to do? I got a stay of reprieve. A weekend at home.

I could feel the pressure on my brain. It was awful. My eyes could feel pressure building up. I stayed at home and by Sunday had finally driven myself insane.

I had cabin fever. But where to go? What happened if I had a fit??? I decided the safest place was the cinema. It was a packed house as I went to see Woody Allen's 'Midnight in Paris'. My only fear was not a fit but the fact I went to see it at the cinema near the wrong hospital. If I collapsed Id be sent to the nearest one, Prince of Wales in Randwick. My medical notes were at RPA in Camperdown.

The film was great and luckily no fit. Relief. Pure relief :-)

It was back to see the neurosurgeon on Tuesday after yet another CT scan, my 4th I believe. i'm such a crazy crunchy granola chick at times. Slightly new age kooky with a liking for crystals and New Age thinking. Got the picture?! I decided that I could think the brain haemorrhage away. Positive thought and visualisation would do it! Yes I kid you not. Yes I know I am totally mad/eccentric and whatever else you'd like to call me.

Bad news came knocking...the blood clot had actually got bigger. Once clots are treated with steroids, as they liquify to help re-absorption they enlarge!!! Oh holy moly. I paled, visibly.

It was no way out time.

It was brain surgery time do or die time.

Not my finest hour. I knew that I may get my head shaved, lose my Leo lion mane. Did I mention before that I'm vain?! Hell yeah.

I searched the internet for scarves. I couldn't do floral or non descript. It was Alexander McQueen and the skull pattern or nothing. Now I couldn't afford full price so onto ebay I searched and found 2 lovely ones at a bargain basement price, all of $25 each. Bargain and stylish.

I felt as ready as I was ever going to be...

Blowing a gasket aka The Brain Haemorrhage!

G'day again! It's so nice to see you back here. I know todays blogpost doesn't look very funny but I think you'll like my take on it. Humour is the thing that keeps us going. I've always been a glass is half full girl and can find humour in the darkest of moments. BTW...spoiler alert... it does have a happy ever after ending!!!  

I'm two and a half years on from this little debacle. It seems quite bizarre looking back on it. For a nurse I'm really not very sensible at times with my own health. Understatement of the decade!

I'm great at telling patients/clients what to do.

Do any of you lupus people find being sick really boring? I get so sick of going to the doctors, taking my pills, blah blah blah... So when things happen I tend to ignore it, hoping it will just go away. Only thing is, it never does. I've been wheeled into hospital too many times in a state of collapse because I'd ignored the early signs - of D&V, urine and kidney infections etc. etc.

This one was the icing on my cake. I'd had headaches for 2 weeks. Not every day, but every couple of days. They weren't constant. Oh they are vile but they went. I figured I was working too much, over tired, working nights. Every excuse possible came to mind! Oh I'm good. I'd vomited twice that week, and it was projectile and immediately I felt much better. Hmmmm.

Two days before I had booked tickets for a stage show of Mary Poppins at a theatre in Sydney. I'd got great seats, a champagne and canapé selection. There was NO WAY I was missing it. NO WAY! I was ready to go, dressed up in my finery. Fifteen minutes before I was due to leave the house I vomited. Major. Did I stay at home?! No. I said to my partner, Simon, "Take me to the show my good man. Nothing is stopping me!"

So yes I went. I had a fabulous time, champagne and canapés. Oh it was just the best. Then Mary flew over the audience. It was magical. I was transported back to that 10 year old little girl watching it at the cinema for the first time. And no headache.

That night I went to work on night shift on postnatal. It started off OK but then just before my break at 3am, the headache returned. This time it was a blinder, literally. We used to sleep in a storeroom on my break on a mattress. I remember waking after half an hour and I saw a black and white dogtooth checked pattern on my NHS regulation white pillowcase. I convinced myself I was just overtired, popped 2 panadeine forte, rolled over on my other side and went back to sleep.

I finished my hours break and the headache was the worst I have ever had. Bear in mind that I had migraines in my 20's and too many hangovers to count in my teens and 20's. You get the picture. The panadeine forte had not touched the sides. So I thought to check my blood pressure. Now I was finally getting sensible. And holy mackerel it was 156 over 110. All my colleagues gasped and went a little pale. Now this is where it gets very interesting. The ward manager wouldn't even discuss it! She knew that she would have to sort out my patient load and she was in a real shitty mood, kids at home, no sleep, get the picture? So I carried on. No?! Oh yes! I finished my shift. Simon came to collect me at 7am as per usual and I said, I'm going to emergency I've got a headache and I think its really bad.

I was seen and triaged and told to sit in the waiting room despite the high BP, my history of Lupus and my headache. Seven people - all minor cases, very minor for example a ring that needed cutting off someones finger! I kid you not. They all got seen before me! I saw a doctor 5 hours later. Five frickin' hours!!! I told him that I knew something had happened and it was possibly a brain haemorrhage. Luckily he believed me and I was promptly sent off for a CT scan. I had no deficit. My neuro-obs were normal.

I'm so grateful to my nurse training and my acute sixth sense. It has saved my life so many times.

The CT scan showed up a massive right sided bleed/haemorrhage. I knew as soon as all the scan people crowded round the monitor I was fucked. I thought which do I want it to be? A tumour, a stroke or a brain haemorrhage. I settled on the brain haemorrhage as I knew it was the most fixable!!!

The doctors were very excited. I wasn't. They'd never seen a patient with such a large haemorrhage and no deficit! Now I really like my brain. My hips, my knees and in fact all my joints can quite happily be sacked. I don't even care if I lose my legs. Take them all. But my brain is rather precious. I write, I do crosswords, Its a very random eccentric thing my brain. It keeps me sane through this lupus shit. I started to panic. I'd only written two thirds of the Shaken Cradle. It may not get finished or even worse it may have a 'different voice' and not sound like me. I was terrified.

I'll complete this next week. I just love a cliff hanger. I'm a writer after all, we're allowed!!!

Till next time and as Arnie says," I'll be back and hasta la vista baby!".

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