extract from "The Mad Goat Lady" blog that I replied to
:Bought your book “The Sun is my Enemy” years ago when I was first diagnosed with Lupus. I refused the steroid treatment, and using my own methods, got a lot better. My ana dropped and then I was ‘faking’ it. See questions sent to WA Lupus :
I have variously been diagnosed with :
Mixed connective tissue disease
Chronic fatigue
Lupus
(Attention seeking)
All due to wildly varying ANA numbers. A few months ago I had my highest reading ever ie >2560.
However, a test two weeks later was 40.
We only have The Royal Flying Doctor clinics every fornight, so I accepted her dismissal of previous diagnosis due to the normal 40 result.
I have , for the first time in years, now been swimming, albeit wearing a large hat. I am now starting to feel the ‘heavy’ ache in all my cells, that I have not felt for years. Used to respect the ‘The Sun is my Enemy’ , theory.
Have you heard of ‘intermitent Lupus’, or as I call it ‘fake lupus’?
Les
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'Nuff said!!
Author,self-publisher,short story writer,co-author self-help book following the suicide of my sister, aged 43. Delight in my new life in Greenvale, Outback Qld. Owning my own home for the first time in 61 years!! YAYYYY. www.amazon.com for my books
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About Me
- lesleymoseley
- greenvale, qld, Australia
- Writer and self-publisher of self-help books. Retired to Greenvale, Outback, Qld
God's way of saying : Have a nice day
'Nuff said!!
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3 comments:
I was very interested on your post re Lupus, and the disease of the connective tissues. My daughter has been fighting these symptoms and had tests for the past 5 years, and they have not come up with a diagnosis yet. They said that it might be Lupus or a "mixed autoimmune disease of the connective tissues"; so your blog had a familiar ring. she has been on steroids for 5 years, and when she tries to wean off of them, her blood platelets plumet and her heart races. Do you have any advice for her? Thanks for your time and I hope you are feeling better & getting stronger.
Sandy
Hi,
I also have a family history of Porphyria which means my liver is VERY sensitive to medication. I refused the steroid/cortizone route and this meant the doctors weren't interested in trying to find an accurate diagnosis. However, I am now MUCH better than all the people I know who took them.
Since I moved away from most of my known triggers, I hardly ever have an episode.
As your daughter's triggers would be so different to mine, there is no parallel advice, other than for HER to identify HER triggers.
Lesley, Are you still writing for this blog? I appreciated your advice on my daughter's condition...thanks. She has not spoken to me in 3 years, so she must have decided that I (her mother) is a "trigger". Don't know if she will ever speak to me again, but my husband and I keep praying that her heart will soften and she will forgive mistakes of the past. Blessings on you this Christmas and hope you are well.
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