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