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Request from a worried husband - wife diagnosed with Lupus
|
|
| Worried Hubby 2005-07-20, 2:11 pm |
| 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).
I really don't know where to turn at this point, and after some poking
around on the 'net I found this group. I've done some research on
lupus at www.lupus.org, and quite frankly, I'm quite frightened.
(Although, I must admit, I am one who does tend to over-react to such
things, but nonetheless my level of anxiety is quite high).
I know that in many cases lupus is manageable, but I am also aware that
this can potentially be a fatal disease. And, being human, this is the
part of the disease that my mind tends to dwell on, and the thought of
possibly losing my wife (of whom we are parents of a 9 and 16 year old)
is, well, quite overwhelming at this point.
So, at this point, I am looking for input, perhaps encouragement, and
words of kindness that may help ease my anxiety. Thank you, your
responses will be greatly appreciated.
Signed,
One worried husband
| |
|
| Hi OWH.
Certainly i can understand your fears. It's natural and there may follow a
"grieving" period for both of you if the diagnosis is correct.
You do not mention if she is having systemic symptoms as well. However, I
can give you some basic #s that I hope will help. These quotes are from
"The Lupus Book, 3rd Ed" by Dr. Daniel Wallace
"Cutaneous (discoid) lupus and drug-induced lupus are associated with a
normal life expectancy. Patients with non-organ-threatening SLE [systemic
lupus] can expect the same outcome as that of a person without l
--
KCat
For Pen Talk, Images, Trading and Reviews: The Fountain Pen Network
http://pagesperso.laposte.net/fpnet
For Lupus Support and Info
http://www.ghg.net/schwerpt/ASLFAQ/
upus;"
[Localized DLE (above the neck)] rarely eveolve into systemic lupus and are
treated with antimalarial drugs or local remedies. [Generalized DLE (above
and below the neck] has a 10 percent chance of developing into systemic
lupus."
So basically, if she does only have DLE, firstly her risk of developing
systemic lupus is very small, secondly, even if she does develope systemic
lupus, the better chances are she will live a normal life span. As
treatment continues to improve and early diagnosis continues to help
patients have more control over flares and symptoms in general, our
prognosis continues to improve.
Beyond the statistics - I have a neighbour who has localized DLE and has had
very little in the way of other health problems and continues to be active
and overall healthy. She and her husband like to go on long trips in their
RV which seems to work just fine for her. She follows some of the basics of
lupus care: avoiding too much UV exposure, resting as needed, and i believe
she has only had local steroid injections but may be on Plaquenil (overall,
a mild drug compared to many of those used to treat systemic lupus.)
I have mild SLE and have for several years done very well on plaquenil alone
as far as "disease modifying drugs" are concerned. Likewise, my sister has
SLE and has been diagnosed for 17 years. she has her ups and downs as do
most of us. I also have a friend who has been diagnosed since she was 9.
She suffered kidney failure and obviously has one of the more aggressive
cases of SLE. But she is 43 now and very active. She does have to make
concessions to the disease and while her kidneys don't function great, they
do function. So you can see there is a vast spectrum of disease and it may
take some time to determine just where your wife is on the spectrum.
Whatever the outcome of her testing... I hope you will continue to seek
support in coping with this. while DLE is generally a much milder disease
than SLE, it's still something to adjust to and can be hard on a woman's
self-esteem because of the lesions.
I hope that if she is diagnosed with DLE, that she will respond well to
treatment and that it will follow the large percentage of cases that remain
"merely" a skin condition.
Please let us know what we can do to help.
| |
| Worried Hubby 2005-07-20, 2:11 pm |
| KCat wrote:
> Hi OWH.
>
> Certainly i can understand your fears. It's natural and there may follow a
> "grieving" period for both of you if the diagnosis is correct.
>
> You do not mention if she is having systemic symptoms as well.
Hello KCat, Thank you very much for your response. As far as systemic
symptoms, no, she is not having any of those - at least she has not
mentioned having any (fever, migraines - well she does have these but
she has had them for nearly 15 years), joint aches, etc. She has been
dealing with a rash that was initially diagnosed by her PCP as
pseriusis (I know I spelled that incorrectly) which she has been
dealing with for the past 3 summers - it would mostly go away during
wintertime and then would rear it's ugly head again in the summer time.
> However, I
> can give you some basic #s that I hope will help. These quotes are from
> "The Lupus Book, 3rd Ed" by Dr. Daniel Wallace
>
> "Cutaneous (discoid) lupus and drug-induced lupus are associated with a
> normal life expectancy. Patients with non-organ-threatening SLE [systemic
> lupus] can expect the same outcome as that of a person without l
> --
>
> KCat
>
> For Pen Talk, Images, Trading and Reviews: The Fountain Pen Network
> http://pagesperso.laposte.net/fpnet
>
> For Lupus Support and Info
> http://www.ghg.net/schwerpt/ASLFAQ/
> upus;"
>
> [Localized DLE (above the neck)] rarely eveolve into systemic lupus and are
> treated with antimalarial drugs or local remedies. [Generalized DLE (above
> and below the neck] has a 10 percent chance of developing into systemic
> lupus."
She mostly has this on her arms, a few on the neck and cheeks, and
nothing on her back. So, it looks like the odds are in her favor,
which is a blessing all by itself.
>
> So basically, if she does only have DLE, firstly her risk of developing
> systemic lupus is very small, secondly, even if she does develope systemic
> lupus, the better chances are she will live a normal life span. As
> treatment continues to improve and early diagnosis continues to help
> patients have more control over flares and symptoms in general, our
> prognosis continues to improve.
>
> Beyond the statistics - I have a neighbour who has localized DLE and has had
> very little in the way of other health problems and continues to be active
> and overall healthy. She and her husband like to go on long trips in their
> RV which seems to work just fine for her. She follows some of the basics of
> lupus care: avoiding too much UV exposure, resting as needed, and i believe
> she has only had local steroid injections but may be on Plaquenil (overall,
> a mild drug compared to many of those used to treat systemic lupus.)
>
> I have mild SLE and have for several years done very well on plaquenil alone
> as far as "disease modifying drugs" are concerned. Likewise, my sister has
> SLE and has been diagnosed for 17 years. she has her ups and downs as do
> most of us. I also have a friend who has been diagnosed since she was 9.
> She suffered kidney failure and obviously has one of the more aggressive
> cases of SLE. But she is 43 now and very active. She does have to make
> concessions to the disease and while her kidneys don't function great, they
> do function. So you can see there is a vast spectrum of disease and it may
> take some time to determine just where your wife is on the spectrum.
>
> Whatever the outcome of her testing... I hope you will continue to seek
> support in coping with this. while DLE is generally a much milder disease
> than SLE, it's still something to adjust to and can be hard on a woman's
> self-esteem because of the lesions.
Thank you so much for the input. As far as support, I will continue to
do so, for both her and I. I hope her self-esteem doesn't suffer to
terribly as I continue to tell her I love her and to let her know I
think she's a beautfiful woman, but I also understand that this may not
be enough. And, I also understand that I will need to continue to
watch for signs of despression and loss of self-esteem. I'm also
trying to not let her see my level of anxiety/worry. Last night the
only place I could find to release my anxiety and fear was in the
shower where I had a good cry. I figured if nothing else, I could
blame my red eyes on the shampoo.
>
> I hope that if she is diagnosed with DLE, that she will respond well to
> treatment and that it will follow the large percentage of cases that remain
> "merely" a skin condition.
Currently, she is on an oral medication (and to be honest I'm not sure
what it is) and she has a cream that contains a steroid of some sort.
I guess I really should become more familiar with what she is taking
should there be some medical situation that should arise.
>
> Please let us know what we can do to help.
Thank you so very much. I'm sure I will continue to come up with
questions for which I'm seeking answers, sometimes reading medical
websites isn't enough to answer the questions, and I instead seek
answers/information from people such as yourself who are living with
this, so hopefully I won't become the newsgroup PITA.  Again, thank
you so very much and I'll continue to pray for a cure for everyone.
| |
| Beverley 2005-07-20, 2:11 pm |
| Please do not take this as medical advice; just consider it my thoughts on
the subject. Lupus used to be a death sentence. It's not any more because
they have learned so much more about the disease and how to treat it. In the
years that I have had my Dx (5 years?) I've known of two people who have
died from lupus. Both became seriously ill out of the blue, and they were
not Dx'ed with lupus until it was too late. So having the Dx is helpful
because I know if anything seriously goes wrong with me they are going to
first be checking the lupie factor on me. But when I was Dx'ed they went
back through my med history and said "this was lupus, that was lupus," etc
I've had it since I was a kid and I'm still here and going strong. (Ok, not
real strong but I'm still going. LOL)
I will suggest that your wife stays out of the sun. Sun is a big factor for
so many lupus patients, especially with her skin problems. Also check the
lighting in the home. Do you have florescent lighting? If so consider
replacing it with regular light bulbs.
If her Dx comes back with lupus then you've got a lot to learn but it's a
matter of LIVING with this disease and not dying from it.
Bev
"Worried Hubby" <worriedhubby@hotmail.com> wrote in message
news:1121797190.420424.268680@g43g2000cwa.googlegroups.com...
> KCat wrote:
follow a[vbcol=seagreen]
>
> Hello KCat, Thank you very much for your response. As far as systemic
> symptoms, no, she is not having any of those - at least she has not
> mentioned having any (fever, migraines - well she does have these but
> she has had them for nearly 15 years), joint aches, etc. She has been
> dealing with a rash that was initially diagnosed by her PCP as
> pseriusis (I know I spelled that incorrectly) which she has been
> dealing with for the past 3 summers - it would mostly go away during
> wintertime and then would rear it's ugly head again in the summer time.
>
>
>
[systemic[vbcol=seagreen]
are[vbcol=seagreen]
(above[vbcol=seagreen]
>
> She mostly has this on her arms, a few on the neck and cheeks, and
> nothing on her back. So, it looks like the odds are in her favor,
> which is a blessing all by itself.
>
systemic[vbcol=seagreen]
had[vbcol=seagreen]
active[vbcol=seagreen]
their[vbcol=seagreen]
basics of[vbcol=seagreen]
believe[vbcol=seagreen]
(overall,[vbcol=seagreen]
alone[vbcol=seagreen]
has[vbcol=seagreen]
do[vbcol=seagreen]
9.[vbcol=seagreen]
they[vbcol=seagreen]
may[vbcol=seagreen]
disease[vbcol=seagreen]
>
> Thank you so much for the input. As far as support, I will continue to
> do so, for both her and I. I hope her self-esteem doesn't suffer to
> terribly as I continue to tell her I love her and to let her know I
> think she's a beautfiful woman, but I also understand that this may not
> be enough. And, I also understand that I will need to continue to
> watch for signs of despression and loss of self-esteem. I'm also
> trying to not let her see my level of anxiety/worry. Last night the
> only place I could find to release my anxiety and fear was in the
> shower where I had a good cry. I figured if nothing else, I could
> blame my red eyes on the shampoo.
>
remain[vbcol=seagreen]
>
> Currently, she is on an oral medication (and to be honest I'm not sure
> what it is) and she has a cream that contains a steroid of some sort.
> I guess I really should become more familiar with what she is taking
> should there be some medical situation that should arise.
>
>
> Thank you so very much. I'm sure I will continue to come up with
> questions for which I'm seeking answers, sometimes reading medical
> websites isn't enough to answer the questions, and I instead seek
> answers/information from people such as yourself who are living with
> this, so hopefully I won't become the newsgroup PITA. Again, thank
> you so very much and I'll continue to pray for a cure for everyone.
>
| |
|
| In article <1121797190.420424.268680@g43g2000cwa.googlegroups.com>,
Worried Hubby <worriedhubby@hotmail.com> wrote
>KCat wrote:
>
>Hello KCat, Thank you very much for your response. As far as systemic
>symptoms, no, she is not having any of those - at least she has not
>mentioned having any (fever, migraines - well she does have these but
>she has had them for nearly 15 years), joint aches, etc.
Hmmm. See http://www.northeastlupus.org.uk/hughfaq.htm especially the
Helpful Hints at the end.
> She has been
>dealing with a rash that was initially diagnosed by her PCP as
>pseriusis (I know I spelled that incorrectly) which she has been
>dealing with for the past 3 summers - it would mostly go away during
>wintertime and then would rear it's ugly head again in the summer time.
Could be reaction to light, especially UV light. Have you noticed any
problems following lengthy sessions in shopping malls?
[]
>
>Currently, she is on an oral medication (and to be honest I'm not sure
>what it is)
Is it an antibiotic? People with lupus seem more-than-averagely allergic
to some drugs.
>and she has a cream that contains a steroid of some sort.
>I guess I really should become more familiar with what she is taking
>should there be some medical situation that should arise.
[]
> so hopefully I won't become the newsgroup PITA.
Ah, there's a waiting list for that job
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
|
| "Worried Hubby" <worriedhubby@hotmail.com> wrote in message
news:1121797190.420424.268680@g43g2000cwa.googlegroups.com...
> dealing with for the past 3 summers - it would mostly go away during
> wintertime and then would rear it's ugly head again in the summer time.
sounds like a really good argument for sunblock or sun protective clothing.
In wintertime there's still plenty of UV out there - but we tend to avoid
being outside as much (unless you live in SE Texas, then you avoid being
outside in the summer!)
> Thank you so much for the input. As far as support, I will continue to
> do so, for both her and I. I hope her self-esteem doesn't suffer to
> terribly as I continue to tell her I love her and to let her know I
> think she's a beautfiful woman, but I also understand that this may not
> be enough.
I don't mean to light of the situation but frankly, that's never enough for
most of us females, with or without disease! Ah to be one of those
supremely confident women who can strut without worry.
> And, I also understand that I will need to continue to
> watch for signs of despression and loss of self-esteem. I'm also
> trying to not let her see my level of anxiety/worry.
There are times when you have to do this for both of you. Likewise there
will be times when she probably won't want to put her fears and anxiety on
you. But...(ain't there always a "but") while it's important that our
spouse/SO be strong for us in many ways, it's a delicate balance. For a
long time I thought my hubby really didn't take much of this seriously. I
mean, he took care of me and has always supported me. But sometimes I felt
like he thought "eh, a little aches and pains..." and it was very sobering
and upsetting when a good 3 years into the process (when I started losing
weight drastically) he confessed to his fears of losing me and to much
anxiety and stress he'd dealt with during all this. So while you must be
strong, you must also not be so strong that you completely compartmentalize
to the point that she thinks you don't care. Like I said, it's a delicate
balance. And here again, the female mind comes into play. And people can
disagree with me but IME, we *are* different from men. Our body image, our
need for *expressed* understanding from our SOs, is critical to our mental
health. Sometimes there's not a darn thing you can do about it. That
probably sounds negative but it's meant to say that this is a process and
that you both need to rely not only on communicating with each other but
knowing when you need help emotionally or physically.
> Currently, she is on an oral medication (and to be honest I'm not sure
> what it is) and she has a cream that contains a steroid of some sort.
> I guess I really should become more familiar with what she is taking
> should there be some medical situation that should arise.
yup. Plus, it helps me that hubby *sort of* understands what my meds do and
doesn't downplay their importance. I'm the one always wishing I could go
off all of them! And he's the one who brings me back to earth on that
issue. But if he didn't grasp the importance of the drugs, i might have
gotten in trouble on a few occasions. I once stopped my plaquenil for all
of 6 days and I paid for it with a bad flare of joint pain that took 2-3
weeks back on the med to resolve. Now if I even hint that I want to chuck
them all in the toilet - he gives me a good dressing down. (Andy... here's
one for one of your one-liners!)
> Thank you so very much. I'm sure I will continue to come up with
> questions for which I'm seeking answers, sometimes reading medical
> websites isn't enough to answer the questions, and I instead seek
> answers/information from people such as yourself who are living with
> this, so hopefully I won't become the newsgroup PITA. Again, thank
> you so very much and I'll continue to pray for a cure for everyone.
I haven't read all of the responses to you but if she does get a lupus
diagnosis (or any other similar autoimmune disease) than it's in your best
interest and hers to get a copy of The Lupus Book. This book helps you stay
on top of changes and is an excellent resource when something happens that
leaves you wondering "is this related to the disease?" I recently found two
new copies from second-hand book stores on-line. So you can spend the $25 or
whatever it is through the LFA (they get some of the proceeds of that price)
or be cheap like me and spend $15 or so through a z-shop. since I'm a bit
at odds with the LFA right now (more personal than professional so don't
allow that to sway your decision) I had minimal guilt of getting the cheaper
copies.
I think I should warn you - we are a nutty lot sometimes with very twisted
senses of humour. It's a coping mechanism as you can well imagine. But I'm
sure you will not become a PITA at all. That's what we're here for! uh...
for support I mean. not for PITAs.
Best Wishes on this and take care of *you* too.
kcat
--
KCat
For Pen Talk, Images, Trading and Reviews: The Fountain Pen Network
http://pagesperso.laposte.net/fpnet
For Lupus Support and Info
http://www.ghg.net/schwerpt/ASLFAQ/
| |
|
| "Beverley" <beverly.brown28@verizon.net> wrote in message
news:uqcDe.20915$IJ1.5665@trnddc02...
> I will suggest that your wife stays out of the sun. Sun is a big factor
for
> so many lupus patients, especially with her skin problems. Also check the
> lighting in the home. Do you have florescent lighting? If so consider
> replacing it with regular light bulbs.
I want to echo and add to Bev's advice here.
photosensitivity is very common in lupus patients and obviously the most
outward symptoms are on the surface - the skin. So controlling your UV
exposure can be critical. I believe 70% of lupus patients are
photosensitive to some degree. I am dangerously so. I also believe that
excessive exposure took my very mild symptoms (i just thought I was
overworked and depressed) into more painful and more serious systemic
symptoms. I have known at least one person who was probably having very
minor symptoms (had no diagnosis) and no clue of what UV lighting could do -
who went on a boat outing with friends for a weekend and ended up
hospitalized. Not everyone has a strong response to UV but my point is, if
there's no need to take the risk of worsening the disease, then don't take
it. Lupus is a disease of triggers, flares and remissions. If you can
determine your triggers, you can avoid a lot of flares or at least control
them to a good degree. It's not infallible, for some there are no set,
obvious triggers.
okay - this is my quarterly UV rant... I am especially aware of the
issue because I am one of those extreme cases.
other sources of UV that we may not think of until afterward:
1) old computer monitors. Newer ones have lower emissions but can still
cause problems for very sensitive patients who have to be in front of the
monitor all day. Older ones are the major problem.
2) dept stores, grocery stores. They almost always have uncovered
fluorescent lighting and I get pretty disoriented in them if I'm there more
than 15 or 20 minutes.
3) halogen and iridescent lamps. The latter is more of an infra-red risk
and some of us are sensitive to infra-red heat to a degree. I have to limit
heating pad use for sore muscles for example because it tends to make me
feel queasy and feverish. Halogen can just flat out burn your skin. for
bright lighting, consider some of the new (and, IMO, really cool-looking)
LED lamps. They're more expensive but draw less power and are cool
(literally).
On a cloudy day, UVA still penetrates clouds. most people do not notice UVAs
effects but to a lupie it is just as bad as that frying UVB.
whew... I'm sure I'm forgetting something.
| |
|
| "Andy" <andy@kitzbuhel.demon.co.uk> wrote in message
news:nceJAXIdUV3CFwfI@kitzbuhel.demon.co.uk...
>
> Ah, there's a waiting list for that job
yeah... guess who currently fills the position!
> Andy Taylor [Chair, N E Lupus Group]
> See http://www.northeastlupus.org.uk for more!
| |
|
| Just chiming in to echo everyone else's caution about the sun. I had
numerous migraines every year since I was a young child until I learned
from THIS group about photosentivity. I am now down to 1-2 much milder
ones a year just simply by avoiding the sun (and other sources of UV),
sunblocks, hats, layering, etc. In the middle of a summer day, being
outside 10 minutes unprotected can be enough to knock me off my feet for
a day or two with migraine, fatigue, nausea, and pain. (I can look
mighty silly "bundled up" in the middle of the summer. But, I can
assure you that looking silly beats the alternative.)
There have been discussions in the past about which sunblocks work best.
I look for sunblocks that use titanium dioxide which is a physical
barrier.
P.S. It is wonderful to have a supportive and understanding spouse!
KCat wrote:
> "Worried Hubby" <worriedhubby@hotmail.com> wrote in message
> news:1121797190.420424.268680@g43g2000cwa.googlegroups.com...
>
| |
| Nicole H 2005-07-20, 2:11 pm |
| Hi
Glad you found us. Sorry you're here.
While I can't understand your position, I do know your wife is lucky to have
you. Having a supportive husband and children make all the difference in
the world.
I got sick right after getting married. My children have never known me
well (I have systemic lupus- no major organ involvement).. I got my official
diagnosis while pregnant with my daughter.
I can imagine that the diagnose of DLE is terrifying... it's scary to your
wife too. Lupus is one of those diseases that vary so much we never know
what's going to happen.
Educate yourself, find a local support group, get a good doctor- doesn't
necessarily need to be a rheumatologist after the initial diagnosis and
treatment, and just try to understand.
Keep your eyes open for symptoms..... the earlier the disease is caught, the
better. It's no longer a death sentence. I've been sick for 10 yrs, am 29
yrs old and plan on having a long life ahead of me.
Take care
Nicole
"Worried Hubby" <worriedhubby@hotmail.com> wrote in message
news:1121782828.382672.188960@g49g2000cwa.googlegroups.com...
> 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).
>
> I really don't know where to turn at this point, and after some poking
> around on the 'net I found this group. I've done some research on
> lupus at www.lupus.org, and quite frankly, I'm quite frightened.
> (Although, I must admit, I am one who does tend to over-react to such
> things, but nonetheless my level of anxiety is quite high).
>
> I know that in many cases lupus is manageable, but I am also aware that
> this can potentially be a fatal disease. And, being human, this is the
> part of the disease that my mind tends to dwell on, and the thought of
> possibly losing my wife (of whom we are parents of a 9 and 16 year old)
> is, well, quite overwhelming at this point.
>
> So, at this point, I am looking for input, perhaps encouragement, and
> words of kindness that may help ease my anxiety. Thank you, your
> responses will be greatly appreciated.
>
> Signed,
>
> One worried husband
>
| |
| Nicole H 2005-07-20, 2:11 pm |
| Definitely check out www.solumbra.com
Amazing clothes.
Also, sunscreen shouldn't be optional in this day of information and
especially for someone with lupus.. there are some great ones out there.
Don't take anything to boost, enhance, improve the immune system as lupus is
an overactive immune system.
That's all I can think of right now
| |
|
| I've been diagnosed with SLE for 20 months now, but probably been lupy for
at least 10 years. The only advice i would really like to offer is don't go
overboard looking on the net for info, it can be terrifying- it's the worse
case scenarios that always seem to stick. Look for symptoms and deal with
them as they arise, one day at a time. Your wife is likely to feel pretty
miserable some of the time, we all do, but just let me say i work 40 hours a
week as a senior nurse in a palliative care unit; when i was first diagnosed
i imagined losing my job and all sorts but i'm still there, exhausted most
of the time but still carrying on 'normally' (whatever normal is).
Take the good with the bad, and keep in touch
DEB (UK)
"Nicole H" <crimsonshedemonREMOVE@hotmail.com> wrote in message
news:cPmDe.16453$3o4.7471@tornado.socal.rr.com...
> Hi
> Glad you found us. Sorry you're here.
> While I can't understand your position, I do know your wife is lucky to
have
> you. Having a supportive husband and children make all the difference in
> the world.
> I got sick right after getting married. My children have never known me
> well (I have systemic lupus- no major organ involvement).. I got my
official
> diagnosis while pregnant with my daughter.
>
> I can imagine that the diagnose of DLE is terrifying... it's scary to your
> wife too. Lupus is one of those diseases that vary so much we never know
> what's going to happen.
>
> Educate yourself, find a local support group, get a good doctor- doesn't
> necessarily need to be a rheumatologist after the initial diagnosis and
> treatment, and just try to understand.
>
> Keep your eyes open for symptoms..... the earlier the disease is caught,
the
> better. It's no longer a death sentence. I've been sick for 10 yrs, am
29
> yrs old and plan on having a long life ahead of me.
>
> Take care
> Nicole
>
>
> "Worried Hubby" <worriedhubby@hotmail.com> wrote in message
> news:1121782828.382672.188960@g49g2000cwa.googlegroups.com...
>
>
| |
| William R Thompson 2005-07-20, 2:12 pm |
| "Nicole H" <crimsonshedemonREMOVE@hotmail.com> wrote:
> Definitely check out www.solumbra.com
> Amazing clothes.
> Also, sunscreen shouldn't be optional in this day of information and
> especially for someone with lupus.. there are some great ones out there.
Don't forget to put the sunscreen on fifteen to twenty minutes before being
exposed to sunlight/UV light. The lotions need time to soak into the skin.
Also they block almost all UV-B, but most of them are designed to let
some UV-A through (for tanning, naturally--are there any sunblocks
that cut out all UV-A?) Also, if you're allergic to PABA (para-amino-
benzoic acid) get a sunblock whose ingredient list doesn't include
PABA or anything with "benzo-" in the name.
Rit makes a dye called Sungard. It's colorless and adds about 40 to
any fabric's SPF factor. If you can't find it at a local store, check out
http://www.ritdye.com
As other people have mentioned, fluorescent lights are a problem.
That includes neon signs, overhead fluorescent tubes, quartz-halogen
lamps, those little curlicue tube-thingies that screw into regular sockets,
street lamps, TV sets and other CRT units . . . Fortunately LCD screens
put out a lot less UV than the older monitors.
If you have fluorescent tubes in the house, you can buy UV filter covers
for them from North Solar Screen at
http://www.northsolarscreen.com/html/fluorescent.shtml
and there are probably other companies that sell the same product.
You can also buy UV filtering films for house windows; look in the
Yellow Pages under "Window Coverings." You can find plastic
films for car windows at any good auto-supply shop, although
you'll need to check with your state's Motor Vehicle Department
to see just what is and isn't allowed (some filters cut down on
visibility while driving; some states want you to have a note from
your doctor before you can cover the windows properly).
These films are plastic, so eventually they'll degrade under sunlight
and you'll have to replace them.
Some surfaces reflect UV light very efficiently; if you're on snow,
water or sand you will get UV from both the sky and the ground.
Grass, soil and asphalt reflect much less UV.
Layers of clothing help. Say that your t-shirt has an SPF of 10.
Now you wear a regular shirt over it, and say it also has an SPF of
10. The layers give you a total SPF of 10 x 10 or 100, at least on
your torso.
--Bill Thompson
| |
|
| In article <MHdDe.4020$IG2.1453@newssvr33.news.prodigy.com>, KCat
<kcattx@sbcglobal.net> wrote
[]
>Now if I even hint that I want to chuck
>them all in the toilet - he gives me a good dressing down. (Andy... here's
>one for one of your one-liners!)
Moi?
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
|
| Andy wrote:
> In article <MHdDe.4020$IG2.1453@newssvr33.news.prodigy.com>, KCat
> <kcattx@sbcglobal.net> wrote
> []
>
> Moi?
You'd dress her up?
]
| |
|
| William R Thompson wrote:
> "Nicole H" <crimsonshedemonREMOVE@hotmail.com> wrote:
>
>
>
> Don't forget to put the sunscreen on fifteen to twenty minutes before being
> exposed to sunlight/UV light. The lotions need time to soak into the skin.
> Also they block almost all UV-B, but most of them are designed to let
> some UV-A through (for tanning, naturally--are there any sunblocks
> that cut out all UV-A?) Also, if you're allergic to PABA (para-amino-
> benzoic acid) get a sunblock whose ingredient list doesn't include
> PABA or anything with "benzo-" in the name.
Thanks.
hats have been "big" in our part of the country for some years now (Lupus or
not).
I should have listened to my mother about headwear in the sun.
I just had a precancerous lump on my forehead treated.
J
| |
|
| I am know that all this information sometimes means overload....
I don't have lupus, but I love all my friends here.
Just wanted to add my hug and a prayer...
These here with Lupus....Are very caring and have a vast amount of
information...J will probably be along soon and she is our keeper of the
facts so to say...She always comes through with a mega amount of
information...So just about any question you have....She will find some
useful information about it...
Wishing you and your family lots of luck and many years...
Hugs Cindy
"Worried Hubby" <worriedhubby@hotmail.com> wrote in message
news:1121782828.382672.188960@g49g2000cwa.googlegroups.com...
> 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).
>
> I really don't know where to turn at this point, and after some poking
> around on the 'net I found this group. I've done some research on
> lupus at www.lupus.org, and quite frankly, I'm quite frightened.
> (Although, I must admit, I am one who does tend to over-react to such
> things, but nonetheless my level of anxiety is quite high).
>
> I know that in many cases lupus is manageable, but I am also aware that
> this can potentially be a fatal disease. And, being human, this is the
> part of the disease that my mind tends to dwell on, and the thought of
> possibly losing my wife (of whom we are parents of a 9 and 16 year old)
> is, well, quite overwhelming at this point.
>
> So, at this point, I am looking for input, perhaps encouragement, and
> words of kindness that may help ease my anxiety. Thank you, your
> responses will be greatly appreciated.
>
> Signed,
>
> One worried husband
>
| |
|
| In article <42DE38C0.A4FDA70B@execulink.com>, J <Inhibiting@anon.anon>
wrote
>Andy wrote:
>
>
>You'd dress her up?
>]
>
Yeah... let's see: velvet-fringed jeans, check blouse, sharp boots, and
a great big hat. Dinky revolver loaded with depleted-uranium bullets.
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
|
| "CP" <cp@something.com> wrote in message news:g_jDe.7609$JJ.3870@trnddc09...
<gentle snip> There have been discussions in the past about which sunblocks
work best.
> I look for sunblocks that use titanium dioxide which is a physical
> barrier.
we could be twins, CP. 10 minutes unprotected in full sun - disaster for
me. migraine, joint pain, rashes... the woiks.
>
> P.S. It is wonderful to have a supportive and understanding spouse!
Indeed!
The best sunblock (supposedly) is one that is not available *legally* in the
US. But you can find it in some upper-crust stores apparently. This is one
of those issues where the FDA is being silly about a product in terms of
waiting *too* long for it to come on the market.
| |
|
| "Andy" <andy@kitzbuhel.demon.co.uk> wrote in message
news:mcHJQxJ6Ml3CFwfV@kitzbuhel.demon.co.uk...
> Yeah... let's see: velvet-fringed jeans, check blouse, sharp boots, and
> a great big hat. Dinky revolver loaded with depleted-uranium bullets.
> --
> Andy Taylor [Chair, N E Lupus Group]
> See http://www.northeastlupus.org.uk for more!
you forgot the spurs!
| |
| William R Thompson 2005-07-20, 2:12 pm |
| "J" <Inhibiting@anon.anon> wrote:
> William R Thompson wrote:
[vbcol=seagreen]
[vbcol=seagreen]
[vbcol=seagreen]
> Thanks.
> hats have been "big" in our part of the country for some years now (Lupus
> or
> not).
I knew I forgot something in that post--hats! The mesh-type baseball
caps don't give much protection, either from UV or from the heat. Plus
they do a lousy job of hiding bald spots. Solumbra sells a good hat,
with a neck and face drape, along with gloves and other goodies.
That reminds me--is there a FAQ on UV sources and protection?
> I should have listened to my mother about headwear in the sun.
> I just had a precancerous lump on my forehead treated.
A liquid-nitrogen spritz? I've had several of those on my face,
although I don't remember the precise locations. They didn't leave
any marks or blemishes I can see.
--Bill Thompson
| |
|
| In article <HgvDe.907$Ok6.327@newssvr29.news.prodigy.net>, KCat
<kcattx@sbcglobal.net> wrote
>"Andy" <andy@kitzbuhel.demon.co.uk> wrote in message
>news:mcHJQxJ6Ml3CFwfV@kitzbuhel.demon.co.uk...
>
>you forgot the spurs!
>
>
Ouch!
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
| Nicole H 2005-07-20, 10:56 pm |
| I use Ombrelle which contains Parsol 1789.
Can we order the other sunscreen from Canada and have it mailed to us here
in the states?
I have to use sunscreen, plus Solumbra shirt and a hat.
My kids wear only sunscreen that protects against uva/uvb rays.....
I would like to find a reasonably priced facial moisturizer w/spf 30... the
one I'm using (dove) is only spf 15. Any ideas?
Nicole in sweltering CA
Parsol 1789 is a critical sunscreen ingredient that protects against
photodamage and premature aging of the skin from exposure to UVA light. The
FDA approved Parsol 1789 (avobenzone) in April 1997 for use in over the
counter sun care products in the United States. Parsol 1789 has been widely
used in European, Canadian, and Australian sun and skin care products since
the early 1980s. Subsequently, some American pharmaceutical and cosmetic
companies have introduced products containing Parsol 1789 to provide broad
spectrum UVB/UVA protection against skin damage and premature aging of the
skin.
| |
|
| cindy wrote:
> I am know that all this information sometimes means overload....
> I don't have lupus, but I love all my friends here.
me too
> These here with Lupus....Are very caring and have a vast amount of
> information...J will probably be along soon and she is our keeper of the
> facts so to say...She always comes through with a mega amount of
> information...So just about any question you have....She will find some
> useful information about it...
hehe..thanks for the vote of confidence.
I am reading and unless I see where I can add to KC, William or others'
thoughts, (or someone has a question that I can search out for them) I'll let
the others do what they do well.
Thanks again and hugs Cindy,
J
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