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Medical Forum / Diseases and Disorders / Lupus / July 2005Request from a worried husband - wife diagnosed with Lupus
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  SignatureKCat 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. > 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 [quoted text clipped - 18 lines] > 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 [quoted text clipped - 25 lines] > 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. 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 > > Hi OWH. > > [quoted text clipped - 97 lines] > 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 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. >> Hi OWH. >> [quoted text clipped - 7 lines] >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 :) SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! > > so hopefully I won't become the newsgroup PITA. > > 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! > 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 SignatureKCat 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/ 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! 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 > 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 William R Thompson wrote: > > Definitely check out www.solumbra.com > > Amazing clothes. [quoted text clipped - 9 lines] > 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 > William R Thompson 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 [quoted text clipped - 4 lines] > 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 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. <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. [] >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? SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! > [] > >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? You'd dress her up? ] In article <42DE38C0.A4FDA70B@execulink.com>, J <Inhibiting@anon.anon> wrote >> [] >> >Now if I even hint that I want to chuck [quoted text clipped - 5 lines] >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. SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! > >> Moi? > > [quoted text clipped - 3 lines] > Yeah... let's see: velvet-fringed jeans, check blouse, sharp boots, and > a great big hat. Dinky revolver loaded with depleted-uranium bullets. you forgot the spurs! >> >> Moi? >> > [quoted text clipped - 8 lines] > >you forgot the spurs! Ouch! SignatureAndy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more! 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 > Hello everyone, > [quoted text clipped - 21 lines] > > One worried husband 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) > Hi > Glad you found us. Sorry you're here. [quoted text clipped - 45 lines] > > > > One worried husband 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 > Hello everyone, > [quoted text clipped - 21 lines] > > One worried husband 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 > 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. > 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 [quoted text clipped - 3 lines] > 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 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 > > 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 [quoted text clipped - 11 lines] > > --Bill Thompson >> 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 [quoted text clipped - 11 lines] > > --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! > 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. :) |
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