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.
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