How I managed to stay in remission with lupus

I hope you've all had a really good Christmas and a rest.

In my last blog - June 2016 - I wrote about a speed hump and a lupus flare albeit a mild to moderate one. And boy did it give me a reality check. I never ever take remission for granted. Those of you who have read my whole sorry tale of my lupus journey will understand why. It's been a rollercoaster of 12 years. 7 years of methotrexate (chemo), a brain haemorrhage and neurosurgery and gut vasculitis to give you a few of the lowlights of what lupus has meant to me.

I've achieved remission again. Before I went away to the UK I was working ridiculous hours and I paid for it. I had a month of lupus flare. Tsk tsk.

Oh I was PISSED. 

To get myself back into remission I had to sleep. I've learnt that much from the last 10 years. The thought of going back to the UK for 3 weeks and getting sick scared me a lot. So I set to and did 10 hour night sleeps and a 2 hour nanna naps in the day. Which left little time for anything else. The irony of my life as a baby whisperer, where I look after sleep deprived mums and get their babies sleeping too. 

I was so terrified of going back on the methotrexate and starting off gut vasculitis.

When you've been in a very dark place you never ever want to go back there ever again. In the past I'd had to take 7 months off work to heal myself. Shocking. Have a read of this blog and you'll understand my fear.

https://loopylena.blogspot.com.au/search?updated-max=2014-05-28T00:54:00-07:00&max-results=7

It's taken me 2 months to complete this blog bahahahaha says the time poor girl laughing hysterically ;-) as usual work has overtaken my life. It's now 28th December and Christmas has been and gone and it was my usual low key affair at home, with my significant other and a new cat! Yes I am officially a mad cat lady with 4 cats ;-) and very happy with them all. My newest one is Ziggy a 11 month tuxedo boy and a rescue from the RSPCA. I'm finishing off a non-fiction book so I felt it was a purrfect time to get him. 

Here he is in all his loveliness, Ziggy.

My lupus is still in remission but not all is rosy unfortunately. I've got hypertension and it was at 160/110 and I'm now on maximum of one antihypertensive drug (Micardis Plus 80/20) and I got prescribed another (Zanidip 10mg) but had a big side effect so had to stop after just one day! I went food shopping on Christmas Eve and had a fainting attack in the fruit and veg section of Coles. DOH!! So found a GP in the shopping centre to get checked over. My BP had dropped to 120/90 and that was 30 mins after the event. Luckily my significant other was helping me with the shopping so I could go home. The thought of an ambulance trip and hospital stay over Christmas wasn't a great thought. So it's back to the GP next week and a look at these antihypertensives and my BP. I had noticed my feet and ankles were becoming a bit 'fat' and swollen but I just figured it was the heat as we've had some shocking 38C days this month in OZ. After taking just one dose of the Zanidip I know it's not the heat. 

Back to book writing I go and a bit of cat stroking in between...

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...

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!".