Lupus Support - Thank you all so much...

Author

Thank you all so much...

Worried Hubby

2005-07-20, 2:12 pm

Worried Hubby wrote:
> Hello everyone,
>
> My wife has been diagnosed with discoid lupus (at least initially, the
> dermatologist is 90% sure, but we're waiting the results of the
> biopsy).
>

Hello everyone,

I've received many responses to my posting, in fact too many to respond
to each person individually, so instead I am responding to my initial
posting to thank everyone who has responded.

All this information is greatly appreciated, as well as your kindness
and caring.

At this point, my wife and I haven't said anything to our children. We
want to wait until the diagnosis is confirmed with the biopsy at which
point we can be confident in what we are telling them. If the
diagnosis is correct (discoid lupus) there will need to be some
lifestyle changes for the family in order to help support my wife and
to be aware of her needs. And, in regards to this, I'm sure we'll
continue to have questions as we adjust to all of this.

I will continue to stay in touch with you all (that little catch phrase
should almost give away my location for those of you in the US - I'm in
western PA) and will continue to think of everyone. It's strange how
one day in your life can make you aware of a whole community of people
you never thought of or knew existed and how you then look to that
group of people for support.

Again, thank you for your support. You may not feel like you've done
much in helping, but from this end your input and caring has been of
great help.

William R Thompson

2005-07-20, 2:12 pm

"Worried Hubby" <worriedhubby@hotmail.com> wrote:

> At this point, my wife and I haven't said anything to our children. We
> want to wait until the diagnosis is confirmed with the biopsy at which
> point we can be confident in what we are telling them. If the
> diagnosis is correct (discoid lupus) there will need to be some
> lifestyle changes for the family in order to help support my wife and
> to be aware of her needs. And, in regards to this, I'm sure we'll
> continue to have questions as we adjust to all of this.

One thing--if it does turn out to be lupus, and UV light is a
problem, the problem may not be as dire as it seems. Sensitivity to
light varies, and she may only have to stay out of the midday sun. That's
inconvenient to say the least, but not as overwhelming as having to
worry over every bit of light.

--Bill Thompson

Beverley

2005-07-21, 11:51 am

I cannot stay out in for long periods of time, as in hours, but if I don't
get some sun (about 10 minutes is enough) per day I'm not a happy camper so
the sun has an odd effect on me. Heat destroys me. I can take winter sun
better than summer sun; I think that is because of the heat factor. I don't
sunbathe, I can't tolerate the sun blocks so my only defense is to stay out
of the sun.

But some people cannot even tolerate what little sun comes through the
windows into their homes. Everybody is different.

The lighting in Walmart and other stores is very tiring to me. Tiredness can
often turn to foggy thinking. I can only stand, at the most, 2 hours of
shopping, and then I'm too tired to do anything else all day.

I think everybody has to figure these things out. The bad thing is it is
trial and error for most of us.
Bev

"William R Thompson" <wrthomps@ix.netcom.com> wrote in message
news:0JvDe.1979$6f.46@newsread3.news.atl.earthlink.net...
> "Worried Hubby" <worriedhubby@hotmail.com> wrote:
>
>
> One thing--if it does turn out to be lupus, and UV light is a
> problem, the problem may not be as dire as it seems. Sensitivity to
> light varies, and she may only have to stay out of the midday sun. That's
> inconvenient to say the least, but not as overwhelming as having to
> worry over every bit of light.
>
> --Bill Thompson
>
>

herbwormwood

2005-07-22, 8:59 am

On Wed, 20 Jul 2005 18:19:56 +0100, William R Thompson wrote
(in article <0JvDe.1979$6f.46@newsread3.news.atl.earthlink.net> ):

> "Worried Hubby" <worriedhubby@hotmail.com> wrote:
>
>
> One thing--if it does turn out to be lupus, and UV light is a
> problem, the problem may not be as dire as it seems. Sensitivity to
> light varies, and she may only have to stay out of the midday sun. That's
> inconvenient to say the least, but not as overwhelming as having to
> worry over every bit of light.
>
> --Bill Thompson
>
>

I agree, with this.
And also bear in mind discoid lupus is rarely life threatening because it
does not affect organs. However it can be very distressing and the distress
can lead to depression.
I have not picked up how old your wife is, but as we get older we become more
prone to develop thin bones or osteoporosis, and when we are younger we build
up our bone strength, and sunlight is helpful for this because it gives us
vitamin D. Vitamin D helps build bone strenghth and one way we get it is from
summer sunlight
If your wife has problems in the summer, staying out of the sun will help but
I personally think sun avoidance can be taken to extremes. I don't know where
you live but here in England we only get enough vitamin D from Sunlight from
about April to October. I have had the serious form of systemic lupus for
26 years and when I was first diagnosed at the age of 12 my mother made me
wear white cotton gloves and a hat when I went outside and I felt like a
freak. Feeling like a freak and I went into my teenage years caused me great
mental distress.
I now have osteoporosis and I don't think all the sun avoidance when I was
young helped. So yes, in my opinion, as a temperate climate lupie, use
suitably factored sun screens, hats and don't sunbathe, but don't hide
indoors all the time either!

KCat

2005-07-22, 5:49 pm

"herbwormwood" <herbwormwood@yahoo.co.uk> wrote in message
news:0001HW.BF069F28005EDE6CF04075B0@www.x-privat.org...
> I agree, with this.

yup

> I personally think sun avoidance can be taken to extremes.

it can, yes. I worry about the bone strength problem a lot. As I was sure
to mention a couple of times, I am an extreme case with an extreme response
and I have systemic symptoms, not discoid.

Essentially it comes down to knowing your personal limits, living within
them when you can and just being aware of what extremes can do.

I believe I heard that for kiddos, they should get about 10 mins a day for
bone growth/vit. D utilization. That number is likely smaller for adults.
I'm sure I get at most, 1-2 minutes on your average day. On errand days,
much more.

> freak. Feeling like a freak and I went into my teenage years caused me
great
> mental distress.

yup... i had my own experience with freakdom via scoliosis.

i don't mind the looks I get in my outfit most times. MOST times. and I've
gotten to the point that it feels unnerving not to be covered. I was never
a sun worshipper to begin with so it isn't a huge loss. I'm of British and
German descent - hardly tanning-inclined.