Yesterday, 09:32 PM
there is a few other members here that take benlysta .....
the thing that surprised me is that it take quite a while for it to properly take effect....
2 replies | 24 view(s)
Yesterday, 05:10 AM
nice to see someone trying to improve our symptoms.
not just focusing on a cure.
I hope the next step of trials starts soon.
1 replies | 16 view(s)
09-18-2014, 01:55 AM
it is hard, but common for us to develop secondary conditions.
I too have developed more auto immune disorders, than I was originally diagnosed...
2 replies | 61 view(s)
09-11-2014, 10:14 PM
hi kim, and welcome.
please feel free to ask questions.
we are not doctors .....
but we can share our experiences, and hopefully help you...
4 replies | 101 view(s)
09-11-2014, 10:12 PM
there is quite a few other Australians on this site .....
so you are not alone.
2 replies | 68 view(s)
09-10-2014, 05:36 AM
hugs .... hope this is the end of your challenges :)
4 replies | 103 view(s)
09-02-2014, 05:33 AM
hi mandy, and welcome.
sorry I cannot help with your question .....
but I wanted to welcome you anyway.
3 replies | 134 view(s)
- Date of Birth
- December 2, 1961 (52)
- i have 2 children with my wife cherie.
she also has 4 children from a previous marriage.
we have 4 grandchildren from the older 3.
i have officially been diagnosed with lupus and firbomyalgia.
i have a lot of secondary complaints as well, but they are not really diagnosed.
these secondary complaints include;
headaches, irritable bowel syndrome, dry mouth / throat (especially first thing in the morning),
dry eyes, circulation problems, heat rash (worse than most), skin problems and rashes,
sore joints, muscle weakness, unable to regulate my body temperature, reduced cognative skills,
i sweat when under pressure (physical or mental), mental pauses (where the brain stops for a second or so).
i grew up basically normal. could never compete well in sports.
no real health problems, just got everything that was going around.
always slightly unwell.
bad growing pains, awkward and clumsy.
my symptoms would wax and wain. sometimes good usually just annoying.
i had 2 or 3 mental breakdowns, due to stress. but usually i handled stress really well.
my mind would wander without me being able to focus properly.
i went to counsellors, but they could never relate to my description of my problem.
it was like i was in a helicopter overlooking my life, i could talk about it, (as a third party).
i was never great at school. i passed because everyone knew i tried hard. always only just making the grade.
orally, i did great, having to write what i knew, was a problem.
i had no staminer, sometimes even raising an arm was an issue.
what eventually led to my diagnosis, was pains in the legs and knees. and right shoulder blade.
i suspected blood clots, and was flying to and from work. working in the mines.
doctors could not find what was wrong, as usual.
eventually a doctor put enough together to send me to a rhuematologist.
i was origionally tested for lupus, to rule it out.
the fibromyalgia diagnoses came about 12 months later.
i have not worried testing for the other complaints, i treat them as symptoms of my main two illnesses.
In November 2012, my wife and I seperated.
My lupus has made me very impersonal, and I also fly off at unimportant things. My emotions are either on or off.
Luckily we still get on well. She just cannot live with the unemotional person I have become. My mood changes have destroyed my childrens relationship with me also.
They are afraid of me, and the mood changes.
- pinjarra, western australia
- family, horses
- disability pensioner
When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.
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View steve.b's Blog
on 10-30-2012 at 06:48 PM
What do I mean by the real cost?
Lupus costs in every way!
Lupus causes us many difficulties.
Lupus causes us many hard ships.
Lupus causes our health to fail.
All of these things are a cost of having Lupus.
These are not what I am referring to.
As humans we identify people by there traits and personalities.
We say this is a kind old woman,
Or he is a grumpy old may.
Even she is a busy body.
These traits make