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.

My diagnosis sinking in and starting to write

I was really struggling with my health since my recent diagnosis of lupus (SLE). 

My joints hurt like hell. I was popping panadeine like there was no tomorrow. It didn't hardly touch the sides. I was so tired that I lived on the couch. Doing a full days work was torture. 

I started eating as I felt tired and I thought if I ate it would help! No it didn't. Instead I gained a couple of stone just like that. Hunger, pain and tiredness are so linked. I'd never been overweight before but it was starting.

I was living and working in Melbourne. Australia is a great place to live but not if you have Lupus. I was photosensitive. My face would flare up at any sun exposure. I had to walk in the shade, wear big hats and cover my skin up.

I started to think about how I was going to live with this disease. I knew that I may get ill, really really ill. Could I still do my current job longterm? I was an outreach nurse. We call them Enhanced Home Visiting. I was visiting mums with mental health issues and child protection cases. I had sleep and behaviour problems to fix in babies and toddlers. It was tough. My work was very stressful. Maybe not ideal with an auto-immune disease. Its something all Lupies have to really think about. I was good at what I did but did that really mean i should continue to 'save the world'? Or maybe I should be concentrating on saving me?

Nurses are known to be kind to others but we are not always kind to ourselves.

This was going to take some working out. I knew I really had my work cut out.

A lot of people with Lupus are high achievers, Type A personalities. We eat stress for brekkie.
But stress is toxic. Cortisol is our enemy.

http://kendraisola.blogspot.com.au/2010/03/lupus-personality.html

http://www.lupuscolorado.org/can-knowing-your-personality-type-help-improve-your-health/

So I had to get thinking. What could I do that was stress free and still allowed me to rest. My joints hurt like hell, I was exhausted. 

I love reading, cooking and baking, knitting and crochet. No none of these. I had no concentration span for any of them. And yes I crocheted this blankie for my sisters bub subsequently.

It's important to know that I have the craziest imagination ever. I was reading classics at 7 years old. I speed read, speed think and speed write.

Something told me to write. I didn't know what or how. So I just got on the computer and started with an idea. It became a paragraph, then a whole page. I gave it an outline and a plot. I looked at it and looked at it again. I had no idea where this story had come from. It was fiction. It was way out there. But it was fun and it intrigued me.

I decided to do a creative writing course in Melbourne at an evening class. It was fun and got me thinking. We had to do some writing activities in the class. The lecturer loved my stuff. It made me feel good. It gave me hope.

You HAVE to have hope. Its the one thing, the only thing that keeps you going. Love to all and big big hugs :-)

As we say in OZ 'love youse all and see y'a soon, real soon.'

Multiple miscarriages, antiphospholipid syndrome and an ANA off the richter scale (SLE)

I'd had a few miscarriages before my lupus diagnosis and I went on to have 2 more, 5 miscarriages in total. I knew after the 2nd one that something was really wrong. 

Sometimes you just have a gut instinct. I'm a midwife and the thought of not having children of my own was just about unthinkable. It still is. But I've had to accept my reality. Just the same as I've had to accept Lupus (SLE), fibromyalgia and every other shitty diagnosis I've collected along the way.

I distract myself with lots of things. I write when i have the time and energy. This week I've done three overnight stays helping families teach their babies to sleep. I'm a baby sleep guru. And I'm feeling officially f***ed. I have a slightly potty mouth at times. That's just me. So I have used all my spoons up. I managed to get myself out of bed, dressed at 4pm and I'm sat on the couch blogging. It'll be a glass of red and an early night tonight!

I've learnt to give into it.

By miscarriage no 3 the hospital decided to investigate. They said next time I got pregnant I should take aspirin 100mg and Clexane sub cut injections. I was happy to try anything if it meant a pregnancy that went past 8 weeks.

My marriage was a bit rocky. My husband was being a b**tard. He didn't want kids but couldn't tell me. Yet we weren't using any contraception.

After miscarriage no 4 the hospital investigated and did a full blood screen unbeknownst to me. I thought I was going back to hospital for my results of my D&C and histopathology of the retained products of conception.

Instead I was told it was almost certain that I had Systemic Lupus Erythromatosis. My ANA was off the richter scale. It was 1:1280 and i had the speckled pattern that is consistent with SLE.

http://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Antinuclear_Antibodies_(ANA)/

It was the highest it could be. I had inflammatory markers. My ESR and CRP were raised.

I was stunned.

They told my husband that the first 5 years of my disease progression would give them an idea of my disease picture and what was likely to happen to me. My husband thought his life was over. It was almost like he was being given a death sentence, not me. He sat there shocked and silent. I felt numb. It was really hard to take in.

http://www.allergy.org.au/patients/autoimmunity/systemic-lupus-erythematosus-sle

I was referred to the complicated disease and pregnancy clinic to see a Rheumatologist.

http://www.lupusresearchinstitute.org/lupus-facts/lupus-diagnosis

At this time I had 5 of the 11 diagnostic signs of SLE.

The “Eleven Criteria”

1. Malar rash: butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash: raised red patches
3. Photosensitivity: skin rash as result of unusual reaction to sunlight
4. Mouth or nose ulcers: usually painless
5. Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurologic disorder: seizures and/or psychosis
8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it. 

- See more at: http://www.lupusresearchinstitute.org/lupus-facts/lupus-diagnosis#sthash.u9BKQTAi.dpuf

I had no 1, 3, 4, 5, 9, 10 and 11. Seven of the eleven criteria. I also had anti Ro (SSA) which can cause heart block in your babies. Just great. 

http://goo.gl/M0VwSZ

http://goo.gl/XXLj32

And I had the anti-cardiolipin antibodies.

http://www.hughes-syndrome.org/about-hughes-syndrome/what-are-the-symptoms.php#.Uz5hGF55i3U

The roller coaster had arrived.

You have parvovirus B19 & 99% you do not have Lupus! Famous last words.

The journey to diagnosis just got so much worse. In fact it was horrendous and so confronting. 
I'm finding writing all this stuff down from 10 years ago quite emotional. 

Looking at myself now I hardly recognise this person. 

I'm well, in remission and am very functional. Yes I'm like the tin man in the mornings. I have joint and fibromyalgia pain issues. I feel tired easily but I can run my own business. I can write. I don't do housework. I finally gave in a few months ago and I have a cleaner and it was one of the best things I have done. Why did I keep on trying to run myself into the ground? What was I trying to prove and to whom???!

Sometimes us Lupies are our own worst enemies. 

Giving in is OK. Some things are not worth the battle. I choose how I use my energy each day. There's a great theory called the Spoon theory. I love it and it helps explain our disease to others. I'm sure a lot of you have heard of it too. It's genius :-)

Not long after I started work as a Child & Family Health Nurse in Melbourne I contracted a virus. It was a particularly nasty virus called Parvo Virus B19 aka Slapped cheek syndrome. It hit me like a ton of bricks. 

http://www.cdc.gov/parvovirusb19/fifth-disease.html

I was ill for 6 months and at times felt I hadn't the strength to do anything. Getting out of bed was a big ask never mind work. But I was only on a permanent residents visa so no work...no money. I had joint pain, temperatures of 38-38.5C. I had a red face especially my cheeks. I felt like I had flu permanently. 

The rheumatologist I was referred to did a full blood screen. It was viral. It was Parvovirus B19 and I'd most probably contracted it from a child in my job as a Child & Family Health Nurse. He also said that I'd had Epstein Barr (glandular fever) in my past. That was something I hadn't known. He told me that 99% I didn't have Lupus. Famous last words.