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    Thank you so much, Steve. I really do appreciate it
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    I have got maxalon, and pramin, but the problem is that it makes me too drousy and I cannot function at school. The maximun dose I can have at school is 1/2 a tablet, and that makes me so tired, and it doesn't take away all the nausea. I think the problem I am having is that the muscles in my gut are wasting away and I am not sure what can be done about it. Apparently it doesn't have anything to do with the medication I have been on because the nausea has been getting worse over the last few months. Now it is almost with me all day long. I just have to wait and see and put up with it for the time being. If it is a lot worse by next week I will go and see my GP, but this is such a rare disease, she probably won't have any solutions, other than take the the full dose of maxalon and take some time off school and SLEEP!
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    NEW DAY .. new challenges ... new exciting things to celebrate. Time to get over it, time to laugh, time to find out what I can do to make someone feel good. Thanks for letting me offload.

    Hey Steve, the way your teeth are going, you could end up with a new set of teeth and look like one of those movie stars, all white, all shiny, and all perfect. I want to look at the first pictures!
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    OK - day one of school - no kids yet. BY GOSH .... I could hardly do anything, I cannot think straight, I was so sore, I have only got another day before the kids come back. I know I will get it together though, I always do, but I am way worse than ever at the moment. I am so happy during the day, excited about my life, but by the time I get home, my life is sucked out of me. Everything just catches up with me, the pain, the tiredness, and as soon as I lay down the nausea hits me like a tidal wave, then I can't sleep, and when I do, I wake up every hour choking, in pain, and sick. I was excited knowing that I can start to get better, but then after today I have come to the realisation that the medication is going to take some time to work and I just have to acceprt that i will get worse before I get better. Everyday I loose more muscle function, and my nausea gets worse, and I loose more weight. . . . OK sooky la la finished.
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    I’ll let you know how I am feeling after going to school for the day. I am on cloud nine now that I know that I (hopefully) won’t get any worse! But I know that it is going to take a few months until I can see any real difference. I just wish the pain and nausea will go way sooner though. AND that I can sleep for more than a few hours a night. I suppose a full week of teaching will be an indicator on how I am feeling. I have been actually been getting progressively worse during the holidays, so hopefully teaching will distract me. By the way, I tried to walk faster than the oldies in the pool this morning now that I am all pumped up with steroids - NO GO MATE - they are still faster than me! Give me 6 months, and I will be making waves (tidal waves I hope).
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    So an update on how you and your family are this week please??????? And no saying “fine’ or ‘OK’ remember I know what those acronyms really mean!
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    Thanks steve designed if off imiki and added the butterfly
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    I guess I just think of horses as being really expensive lol My grandparents had a couple of babies but they've either grown up, been sold, or got sick and died =( the one that died last year was so pretty but she rolled around so much her intestines got twisted up, or something like that. I would love to! What a vacation that would be lol
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    You're so lucky! I wish I had my own horses. Maybe one day when Im a rich doctor I can have my own lol I want to live out in the middle of nowhere and that sounds like the perfect combo for horses.
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    They're my grandparents horses =) Sadly I did not get to ride them when we were there that day because they feel bad getting them out when its so hot but I was promised I could get back out and ride once the weather was a little better. I love horses. The one with the black and white mane is the one that I ride when I go over there.
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About steve.b

Basic Information

Date of Birth
December 2, 1961 (55)
About steve.b
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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Recent Entries

the REAL cost of Lupus

by steve.b 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

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