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

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!