Question:
Hi Adil, Welcome to the group. There are many people who lead very active lives when they have lupus. A lot depends on what organs are actually affected by the disease. I know a lady who has two children, a full time job, and is well. She does get tired, but with all the activities in which the children are involved, it is understandable. Most of us here have a lot of major problems. We try to be upbeat, but just the same, the facts can’t be avoided. Could you tell us more about your friend? We may be able to offer more encouragement, if we knew what problems he/she has. Feel free to talk about anything. BJ-Saskatchewan, Canada "Adil Walji" <a…@ugrad.cs.ualberta.ca> wrote in message
news:Pine.BSO.4.33.0202160336370.15116-100000@csu321.cs.ualberta.ca… – Hide quoted text — Show quoted text -> Hello everybody, I am new to this newsgroup so i am not sure who to > address with my request so I will post this to anybody who wants to help. > A loved one of mine has just been diagnosed with lupus, and after reading > a wealth of information regarding the science of this topic, i was left a > little disheartened. So to get hopes and motivations back up to par, I was > wondering if anybody would be willing share or show me where I can get > some success or uplifting stories in regards to lupus that I could > possibly share with my loved one. I would really appreaciate it. Thank > you.
Response:
Lupus is really weird. One day you wake up and there is something very wrong and it stays with you for weeks or months -then it’s gone just like it came. Or it goes away for 2 days and comes right back! Some times it is just a nagging series of problems. One of our big complaints is we are sick and tired of being sick and tired. Over the years I’ve had some very nasty bouts with the lupus but for the last few years I have managed without too much trouble. Learning what can make this disease worse and avoiding it can be a big help. Also it is important to understand guilt-free naps when needed. There are varying degrees with lupus and the degrees do change. It is important to recognize a big problem from a little problem. Lupus SLE will attack organs and do horrible damage so don’t let something ride and figure it will go away. (Did I just say that? Me who hates going to the doctor?) Really, it is important to make sure you get the medical help when you need it. You failed to say how old your loved one is. In young people lupus can ravage the body quickly and can be very dangerous, in older folks it can sneak in and be a big problem if "parts" are wearing out on their own. But for most of us what we deal with one week is not what we are dealing with the next week. Can we live normal lives? Yes – I’m not sure how normal but aside from a few friends and family members, no one knows I have lupus. I’m not going to run a marathon or bicycle for hours. Some days it’s all I can do to walk across the room or tie a pair of shoe laces. But other days I function with little trouble. I have no neon sign hanging on me that says LUPUS. But few of us do and the biggest problem we run into is that other people don’t understand lupus so even if we had our neon sign hanging around our necks flashing very few people know or understand what we have. So lupus has "hit" your mother, sister, or other family member the best thing you can do is just be there. Be a support for that person. Take the kids for the afternoon so your loved one can take a little guilt-free nap. Maybe wash the car or run the vacuum cleaner. Usually we "lupies" don’t say we can’t do it, it just doesn’t get done because it hurts too much to bend over or we don’t have the energy. We aren’t lazy, we are tired! There is a difference. As mentioned before we often measure success in little increments. It can just be getting ALL the laundry done in one day and getting it folded and put away, attending a daughter’s girls scout meeting, baking cupcakes for someone’s birthday or giving the dog a bath. Laughable maybe to the average person but for us often having the energy to just get ourselves up and dressed and into town to run errands leaves us tired and worn out. Bev "Adil Walji" <a…@ugrad.cs.ualberta.ca> wrote in message
news:Pine.BSO.4.33.0202160336370.15116-100000@csu321.cs.ualberta.ca… – Hide quoted text — Show quoted text -> Hello everybody, I am new to this newsgroup so i am not sure who to > address with my request so I will post this to anybody who wants to help. > A loved one of mine has just been diagnosed with lupus, and after reading > a wealth of information regarding the science of this topic, i was left a > little disheartened. So to get hopes and motivations back up to par, I was > wondering if anybody would be willing share or show me where I can get > some success or uplifting stories in regards to lupus that I could > possibly share with my loved one. I would really appreaciate it. Thank > you.
Response:
Hi Adil! Welcome, the people are great here you can read it in the posts, I always feel brighter after I have read this newsgroup, and I am just going through the whole diagnosis and flare thing at the moment, so I can’t really help though, I feel the same way about myself as you might be about your loved one, I guess it is just the *shock of the new* till we get to grips with it. My dear friend sent me a *lupus* gift basket that he’d made up himself. It had a big straw hat, top quality hypollergenic skin care stuff, boxes of paracetamol, lip balm, hot/cool packs and athritis gel rubs, aromatherapy essential oils, chewing gum, a whole bunch of stuff *lol* it was bizarre but wonderful! Whilst not *celebrating* the advent of a potentially chronic state of illness, it certainly made me laugh more than anything in the past few months and helped with a horrible week of horrible results from blood tests. I guess you gotta have a good sense of humour! Sal
Response:
Bev You describe the whole situation so well – I just had to say thank you – I was feeling kinda guilty today trying to tidy up when I found fungating pototatoes in the vegie box 
Out of all the chores at the moment, lately only my washing does gets washed – just don’t quite know how to get it outside haha – it being so hot and sunny, too sore and tired to lug it around and photosensitive and all 
The real big (even cheesy good!) thing I did today was play a game of hide and seek with the kids 
Sal – a midnight washing-hanger-upper
Response:
Hey Sal, You lucky devil. I mean the lupus gift box, that is a good idea. No one I know has ever done that kind of gift and I bet you will look so cute in the straw hat. So take a picture and post it here. We want to see. Well I want to see. I got me hats and the one I like the best is the old type roll up and put in pocket type, Like a bowl kind haha but it hangs down.. So I am glad you got a lift today, and so sorry about the horrible week you had. I must of missed your post on blood tests cause I did not know anything about it. But then lately I am lucky to keep my own crap in order or read all of the posts everyday. Sense of humor, you bet your buns. That is a key for me, but boy sometimes you got to dig down to find it too. Have a good weekend. And smile… janers
Response:
Definetely not laughable if you have ever tasted my baking! (lol) average person – Hide quoted text — Show quoted text -On Sat, 16 Feb 2002, Pat Meadows wrote: > On Sat, 16 Feb 2002 11:03:45 -0500, "Beverley" > <pottings…@sybercom.net> wrote: > <snip> > >As mentioned before we often measure success in little increments. It can > >just be getting ALL the laundry done in one day and getting it folded and > >put away, attending a daughter’s girls scout meeting, baking cupcakes for > >someone’s birthday or giving the dog a bath. Laughable maybe to the average > >person but for us often having the energy to just get ourselves up and > >dressed and into town to run errands leaves us tired and worn out. > Wow. This is me, exactly. > Pat
Response:
Thanks Bev, I definetly needed this message! If you don’t mind me asking, what are some of the signs, that we should look out for? I make sure that my loved one who is 21 and female, goes to the doctor on schedule. Is that enough? or If a certain symptom should appear, should we try to reschedule the appointment sooner, go to the hospital …. (I think everybody here might have to excuse my ignorance). I would love to know what your history is like? I think through gaining understanding, not only from the medical or scientific point of view, but understanding the sufferer aswell, I can maximize the quality of how to help my loved one? Thanks again Bev! On Sat, 16 Feb 2002, Beverley wrote: – Hide quoted text — Show quoted text -> Lupus is really weird. One day you wake up and there is something very wrong > and it stays with you for weeks or months -then it’s gone just like it came. > Or it goes away for 2 days and comes right back! Some times it is just a > nagging series of problems. One of our big complaints is we are sick and > tired of being sick and tired. > Over the years I’ve had some very nasty bouts with the lupus but for the > last few years I have managed without too much trouble. Learning what can > make this disease worse and avoiding it can be a big help. Also it is > important to understand guilt-free naps when needed. > There are varying degrees with lupus and the degrees do change. It is > important to recognize a big problem from a little problem. Lupus SLE will > attack organs and do horrible damage so don’t let something ride and figure > it will go away. (Did I just say that? Me who hates going to the doctor?) > Really, it is important to make sure you get the medical help when you need > it.
…
Response:
Thanks I really appreciate your help, and yes I’m from Alberta (yeeehaaaaaaa) My loved one is 21 years young. She has been diagnosed quite quickly, about (4-6 months) which I think may be quite quick relative to other patients. Her lupus has been diagnosed as SLE and right now her symptoms are pretty non-specific, except for the swelling in her feet (shes embarrased about it, but I think it’s cute). Would you happen to know any information or where I could get some in regards to life expectancy? or any recent studies pertaining to lupus. I think right now, even though I have read about the science of the disease I am still pretty ignorant, and I think I need some reassurance that things will be ok. I don’t think anybody could 100% surely provide me with this, but the next time I see my loved one, I want just a bunch of posititve things to say. Which leads to my next question which is, when any of you were firstly diagnosed with Lupus, or even now when you are living with Lupus, what are the things you need, what helps, what doesn’t, and basically what can I do to help my loved one live a long and happy life? thanks again everybody, I appreciate it – Hide quoted text — Show quoted text -On Sat, 16 Feb 2002, J wrote: > Hello Adil and welcome to another Canadian. (Alberta right?) > My brother probably has Lupus, yet undiagnosed. > Are you referring to a male or female loved one? > Success or uplifting stories, they are all here. > A chronic illness is a trip, not a destination. > If you want a (partial) list of our posters > http://groups.google.com/groups?q=+%22Appreciation+and+Roll-Call%22+g… > These are our sucess stories. > Tell us more about your loved one. Is it early on in the disease? > Or was it diagnosed due to organ problems? > How old is the person and which type of Lupus do they have?
Response:
The symptoms which are bothering her at the moment are: 1) feet and legs are quite swollen 2) occasional headaches 3) fever 4) fatigue 5) her stomach is quite sensitive to medications, so she has as tendancy to feel nausiated after taking a medication She is only 21 and has just recently (about a week ago) been diagnosed with Lupus. I am almost positive there are more symptoms, but these for the moment tend to dominate. Are you currently diagnosed with Lupus? If possible, I would like to know your history as well? What helps you, what do you need when your down? …. I am sure the questions will continue as the messages are passed. Thanks for you help BJ! – Hide quoted text — Show quoted text -On Sat, 16 Feb 2002, BJ wrote: > Hi Adil, > Welcome to the group. There are many people who lead very active lives when > they have lupus. A lot depends on what organs are actually affected by the > disease. I know a lady who has two children, a full time job, and is well. > She does get tired, but with all the activities in which the children are > involved, it is understandable. Most of us here have a lot of major > problems. We try to be upbeat, but just the same, the facts can’t be > avoided. Could you tell us more about your friend? We may be able to offer > more encouragement, if we knew what problems he/she has. Feel free to talk > about anything. > BJ-Saskatchewan, Canada
Response:
You have to *know* I’ll be the winner . . . neener, neener, neener! "BJ" <B…@sk.nojunk.ca> wrote in message
news:u738l16vqfeb10@corp.supernews.com… – Hide quoted text — Show quoted text -> I’ll race you, Bev. > BJ > "Beverley" <pottings…@sybercom.net> wrote in message > news:u737un2uf9dpbd@corp.supernews.com… > > Go ahead and tell me I can’t do something and see how long it takes me to > do > > it! Stopwatch ready? > > Bev > > "BJ" <B…@sk.nojunk.ca> wrote in message > > news:u72dgcb4pqbvb8@corp.supernews.com… > > > Hi Bev, > > > I love your comment about not treating her like a baby. It drives me > nuts > > > when people do that. I hate it when they keep looking at me to see if I > am > > > getting tired or not feeling well. People better not say to me, "you > > > shouldn’t be doing that." I do what I want to do because I need to feel > > that > > > I am productive. Sometimes I know that I shouldn’t be doing something, > but > > > the mental health aspects are more important to me. Do you feel that way > > > too? > > > Regards, > > > BJ > > > "Beverley" <pottings…@sybercom.net> wrote in message > > > news:u727i2b31ksj46@corp.supernews.com… > > > > There is no magic formula! No perfect way to live, eat or anything > else. > > > The > > > > is a long list of foods that can actually trigger problems in some > > people. > > > > Now, how much does it take to trigger a problem? A mouthful? Or a > whole > > > big > > > > bowl? It varies. It’s sort of like the sun. Some lupies can’t handle > > even > > > > the tiniest bit of sunlight. And me? I swear I’d better get about 10 > > > > minutes a day! Now, I’m not talking about sunbathing – I’m just > talking > > > > about being in fresh air and sunshine. On the other hand the heat gets > > to > > > me > > > > in a heartbeat! Sunscreen is enough for some folks and others use > > special > > > > protective clothing. Watch out for the sun streaming through the car > > > > windows. > > > > Pain is pain and needs to be addressed quickly. Especially in someone > so > > > > young. Usually little aches and pains aren’t exactly life threatening. > > > > Annoying but not usually threatening. Know your own body is the best I > > can > > > > give you on that. Is it a knee joint that aches or a backache right > > where > > > > the kidneys are located? > > > > I would say eat right. Lots of salads, fresh foods, stay away from the > > > > French fries, hamburgers and caffeine & sugar -loaded sodas. All those > > > > things your mother taught you about food – do it! > > > > Sleep is a must. Lupies need more sleep than the rest of the folks on > > this > > > > planet! > > > > At 21 no one wants to hear that they can’t do this or that. So when > > Spring > > > > break comes and everyone hits the beach – well, do it intelligently. > > Lots > > > of > > > > sunscreen, hide under the beach umbrella, drink orange juice and not > > > > espresso on a daily basis. Hey, an espresso once in a while tastes > > good. > > > So > > > > does a beer or a Mai Tai but not 16 of them. Have fun but do it > > > > intelligently! If not she’s apt to wind up in the local hospital. > > > > Lots of folks log daily how they feel and what hurts. This can be > > helpful > > > > for her and her doctors. > > > > Hone the study habits, staying up all night cramming for a test just > > give > > > > lupies brain fog and she won’t remember a darn thing. Extra sleep > before > > a > > > > big test is by far much more helpful. Keep the stress levels down. > Don’t > > > try > > > > to carry 21 or 24 credit hours. > > > > BTW, this is your mother talking! You want to drive her nuts? Baby her > > and > > > > she’ll want to kill you! Be yourself. Don’t try to cram this all down > > her > > > > throat. Suggest but don’t try to control her. Help her when she needs > or > > > > wants it. Remember she’s got to adjust and cope with this diagnosis, > > too. > > > > Don’t smother her – you’ll just push her away. > > > > Bev > > > > "Adil Walji" <a…@ugrad.cs.ualberta.ca> wrote in message
news:Pine.BSO.4.33.0202161048280.32283-100000@csu415.cs.ualberta.ca… – Hide quoted text — Show quoted text -> > > > > Thanks Bev, I definetly needed this message! > > > > > If you don’t mind me asking, what are some of the signs, that we > > should > > > > > look out for? I make sure that my loved one who is 21 and female, > goes > > > to > > > > > the doctor on schedule. Is that enough? or If a certain symptom > should > > > > > appear, should we try to reschedule the appointment sooner, go to > the > > > > > hospital …. (I think everybody here might have to excuse my > > > ignorance). > > > > > I would love to know what your history is like? > > > > > I think through gaining understanding, not only from the medical or > > > > > scientific point of view, but understanding the sufferer aswell, I > can > > > > > maximize the quality of how to help my loved one? > > > > > Thanks again Bev! > > > > > On Sat, 16 Feb 2002, Beverley wrote: > > > > > > Lupus is really weird. One day you wake up and there is something > > very > > > > wrong > > > > > > and it stays with you for weeks or months -then it’s gone just > like > > it > > > > came. > > > > > > Or it goes away for 2 days and comes right back! Some times it is > > just > > > a > > > > > > nagging series of problems. One of our big complaints is we are > sick > > > and > > > > > > tired of being sick and tired. > > > > > > Over the years I’ve had some very nasty bouts with the lupus but > for > > > the > > > > > > last few years I have managed without too much trouble. Learning > > what > > > > can > > > > > > make this disease worse and avoiding it can be a big help. Also it > > is > > > > > > important to understand guilt-free naps when needed. > > > > > > There are varying degrees with lupus and the degrees do change. It > > is > > > > > > important to recognize a big problem from a little problem. Lupus > > SLE > > > > will > > > > > > attack organs and do horrible damage so don’t let something ride > and > > > > figure > > > > > > it will go away. (Did I just say that? Me who hates going to the > > > > doctor?) > > > > > > Really, it is important to make sure you get the medical help when > > you > > > > need > > > > > > it. > > > > > …
Response:
Go ahead and tell me I can’t do something and see how long it takes me to do it! Stopwatch ready? Bev "BJ" <B…@sk.nojunk.ca> wrote in message
news:u72dgcb4pqbvb8@corp.supernews.com… – Hide quoted text — Show quoted text -> Hi Bev, > I love your comment about not treating her like a baby. It drives me nuts > when people do that. I hate it when they keep looking at me to see if I am > getting tired or not feeling well. People better not say to me, "you > shouldn’t be doing that." I do what I want to do because I need to feel that > I am productive. Sometimes I know that I shouldn’t be doing something, but > the mental health aspects are more important to me. Do you feel that way > too? > Regards, > BJ > "Beverley" <pottings…@sybercom.net> wrote in message > news:u727i2b31ksj46@corp.supernews.com… > > There is no magic formula! No perfect way to live, eat or anything else. > The > > is a long list of foods that can actually trigger problems in some people. > > Now, how much does it take to trigger a problem? A mouthful? Or a whole > big > > bowl? It varies. It’s sort of like the sun. Some lupies can’t handle even > > the tiniest bit of sunlight. And me? I swear I’d better get about 10 > > minutes a day! Now, I’m not talking about sunbathing – I’m just talking > > about being in fresh air and sunshine. On the other hand the heat gets to > me > > in a heartbeat! Sunscreen is enough for some folks and others use special > > protective clothing. Watch out for the sun streaming through the car > > windows. > > Pain is pain and needs to be addressed quickly. Especially in someone so > > young. Usually little aches and pains aren’t exactly life threatening. > > Annoying but not usually threatening. Know your own body is the best I can > > give you on that. Is it a knee joint that aches or a backache right where > > the kidneys are located? > > I would say eat right. Lots of salads, fresh foods, stay away from the > > French fries, hamburgers and caffeine & sugar -loaded sodas. All those > > things your mother taught you about food – do it! > > Sleep is a must. Lupies need more sleep than the rest of the folks on this > > planet! > > At 21 no one wants to hear that they can’t do this or that. So when Spring > > break comes and everyone hits the beach – well, do it intelligently. Lots > of > > sunscreen, hide under the beach umbrella, drink orange juice and not > > espresso on a daily basis. Hey, an espresso once in a while tastes good. > So > > does a beer or a Mai Tai but not 16 of them. Have fun but do it > > intelligently! If not she’s apt to wind up in the local hospital. > > Lots of folks log daily how they feel and what hurts. This can be helpful > > for her and her doctors. > > Hone the study habits, staying up all night cramming for a test just give > > lupies brain fog and she won’t remember a darn thing. Extra sleep before a > > big test is by far much more helpful. Keep the stress levels down. Don’t > try > > to carry 21 or 24 credit hours. > > BTW, this is your mother talking! You want to drive her nuts? Baby her and > > she’ll want to kill you! Be yourself. Don’t try to cram this all down her > > throat. Suggest but don’t try to control her. Help her when she needs or > > wants it. Remember she’s got to adjust and cope with this diagnosis, too. > > Don’t smother her – you’ll just push her away. > > Bev > > "Adil Walji" <a…@ugrad.cs.ualberta.ca> wrote in message > > news:Pine.BSO.4.33.0202161048280.32283-100000@csu415.cs.ualberta.ca… > > > Thanks Bev, I definetly needed this message! > > > If you don’t mind me asking, what are some of the signs, that we should > > > look out for? I make sure that my loved one who is 21 and female, goes > to > > > the doctor on schedule. Is that enough? or If a certain symptom should > > > appear, should we try to reschedule the appointment sooner, go to the > > > hospital …. (I think everybody here might have to excuse my > ignorance). > > > I would love to know what your history is like? > > > I think through gaining understanding, not only from the medical or > > > scientific point of view, but understanding the sufferer aswell, I can > > > maximize the quality of how to help my loved one? > > > Thanks again Bev! > > > On Sat, 16 Feb 2002, Beverley wrote: > > > > Lupus is really weird. One day you wake up and there is something very > > wrong > > > > and it stays with you for weeks or months -then it’s gone just like it > > came. > > > > Or it goes away for 2 days and comes right back! Some times it is just > a > > > > nagging series of problems. One of our big complaints is we are sick > and > > > > tired of being sick and tired. > > > > Over the years I’ve had some very nasty bouts with the lupus but for > the > > > > last few years I have managed without too much trouble. Learning what > > can > > > > make this disease worse and avoiding it can be a big help. Also it is > > > > important to understand guilt-free naps when needed. > > > > There are varying degrees with lupus and the degrees do change. It is > > > > important to recognize a big problem from a little problem. Lupus SLE > > will > > > > attack organs and do horrible damage so don’t let something ride and > > figure > > > > it will go away. (Did I just say that? Me who hates going to the > > doctor?) > > > > Really, it is important to make sure you get the medical help when you > > need > > > > it. > > > …
Response:
I’ll race you, Bev. BJ "Beverley" <pottings…@sybercom.net> wrote in message
news:u737un2uf9dpbd@corp.supernews.com… – Hide quoted text — Show quoted text -> Go ahead and tell me I can’t do something and see how long it takes me to do > it! Stopwatch ready? > Bev > "BJ" <B…@sk.nojunk.ca> wrote in message > news:u72dgcb4pqbvb8@corp.supernews.com… > > Hi Bev, > > I love your comment about not treating her like a baby. It drives me nuts > > when people do that. I hate it when they keep looking at me to see if I am > > getting tired or not feeling well. People better not say to me, "you > > shouldn’t be doing that." I do what I want to do because I need to feel > that > > I am productive. Sometimes I know that I shouldn’t be doing something, but > > the mental health aspects are more important to me. Do you feel that way > > too? > > Regards, > > BJ > > "Beverley" <pottings…@sybercom.net> wrote in message > > news:u727i2b31ksj46@corp.supernews.com… > > > There is no magic formula! No perfect way to live, eat or anything else. > > The > > > is a long list of foods that can actually trigger problems in some > people. > > > Now, how much does it take to trigger a problem? A mouthful? Or a whole > > big > > > bowl? It varies. It’s sort of like the sun. Some lupies can’t handle > even > > > the tiniest bit of sunlight. And me? I swear I’d better get about 10 > > > minutes a day! Now, I’m not talking about sunbathing – I’m just talking > > > about being in fresh air and sunshine. On the other hand the heat gets > to > > me > > > in a heartbeat! Sunscreen is enough for some folks and others use > special > > > protective clothing. Watch out for the sun streaming through the car > > > windows. > > > Pain is pain and needs to be addressed quickly. Especially in someone so > > > young. Usually little aches and pains aren’t exactly life threatening. > > > Annoying but not usually threatening. Know your own body is the best I > can > > > give you on that. Is it a knee joint that aches or a backache right > where > > > the kidneys are located? > > > I would say eat right. Lots of salads, fresh foods, stay away from the > > > French fries, hamburgers and caffeine & sugar -loaded sodas. All those > > > things your mother taught you about food – do it! > > > Sleep is a must. Lupies need more sleep than the rest of the folks on > this > > > planet! > > > At 21 no one wants to hear that they can’t do this or that. So when > Spring > > > break comes and everyone hits the beach – well, do it intelligently. > Lots > > of > > > sunscreen, hide under the beach umbrella, drink orange juice and not > > > espresso on a daily basis. Hey, an espresso once in a while tastes > good. > > So > > > does a beer or a Mai Tai but not 16 of them. Have fun but do it > > > intelligently! If not she’s apt to wind up in the local hospital. > > > Lots of folks log daily how they feel and what hurts. This can be > helpful > > > for her and her doctors. > > > Hone the study habits, staying up all night cramming for a test just > give > > > lupies brain fog and she won’t remember a darn thing. Extra sleep before > a > > > big test is by far much more helpful. Keep the stress levels down. Don’t > > try > > > to carry 21 or 24 credit hours. > > > BTW, this is your mother talking! You want to drive her nuts? Baby her > and > > > she’ll want to kill you! Be yourself. Don’t try to cram this all down > her > > > throat. Suggest but don’t try to control her. Help her when she needs or > > > wants it. Remember she’s got to adjust and cope with this diagnosis, > too. > > > Don’t smother her – you’ll just push her away. > > > Bev > > > "Adil Walji" <a…@ugrad.cs.ualberta.ca> wrote in message > > > news:Pine.BSO.4.33.0202161048280.32283-100000@csu415.cs.ualberta.ca… > > > > Thanks Bev, I definetly needed this message! > > > > If you don’t mind me asking, what are some of the signs, that we > should > > > > look out for? I make sure that my loved one who is 21 and female, goes > > to > > > > the doctor on schedule. Is that enough? or If a certain symptom should > > > > appear, should we try to reschedule the appointment sooner, go to the > > > > hospital …. (I think everybody here might have to excuse my > > ignorance). > > > > I would love to know what your history is like? > > > > I think through gaining understanding, not only from the medical or > > > > scientific point of view, but understanding the sufferer aswell, I can > > > > maximize the quality of how to help my loved one? > > > > Thanks again Bev! > > > > On Sat, 16 Feb 2002, Beverley wrote: > > > > > Lupus is really weird. One day you wake up and there is something > very > > > wrong > > > > > and it stays with you for weeks or months -then it’s gone just like > it > > > came. > > > > > Or it goes away for 2 days and comes right back! Some times it is > just > > a > > > > > nagging series of problems. One of our big complaints is we are sick > > and > > > > > tired of being sick and tired. > > > > > Over the years I’ve had some very nasty bouts with the lupus but for > > the > > > > > last few years I have managed without too much trouble. Learning > what > > > can > > > > > make this disease worse and avoiding it can be a big help. Also it > is > > > > > important to understand guilt-free naps when needed. > > > > > There are varying degrees with lupus and the degrees do change. It > is > > > > > important to recognize a big problem from a little problem. Lupus > SLE > > > will > > > > > attack organs and do horrible damage so don’t let something ride and > > > figure > > > > > it will go away. (Did I just say that? Me who hates going to the > > > doctor?) > > > > > Really, it is important to make sure you get the medical help when > you > > > need > > > > > it. > > > > …
Response:
well i was 13yrs old when i was told i had lupus with sle etc…. well i am now 26yrs old they told me i would not live past 21 i am still here and they told me i would never have kids i have had two!!! so i dont reallly belive the doctors when they guess at when i will die i just live every day to the fullest because i dont know when the all migyty will take me!!!! Trin "Adil Walji" <a…@ugrad.cs.ualberta.ca> wrote in message
news:Pine.BSO.4.33.0202161013210.32283-100000@csu415.cs.ualberta.ca… – Hide quoted text — Show quoted text -> Thanks I really appreciate your help, and yes I’m from Alberta > (yeeehaaaaaaa) > My loved one is 21 years young. She has been diagnosed quite quickly, > about (4-6 months) which I think may be quite quick relative to other > patients. Her lupus has been diagnosed as SLE and right now her symptoms > are pretty non-specific, except for the swelling in her feet (shes > embarrased about it, but I think it’s cute). Would you happen to know any > information or where I could get some in regards to life expectancy? or > any recent studies pertaining to lupus. I think right now, even though I have > read about the science of the disease I am still pretty ignorant, and I > think I need some reassurance that things will be ok. I don’t think > anybody could 100% surely provide me with this, but the next time I see my > loved one, I want just a bunch of posititve things to say. Which leads to > my next question which is, when any of you were firstly diagnosed with > Lupus, or even now when you are living with Lupus, what are the things you > need, what helps, what doesn’t, and basically what can I do to help my > loved one live a long and happy life? > thanks again everybody, I appreciate it > On Sat, 16 Feb 2002, J wrote: > > Hello Adil and welcome to another Canadian. (Alberta right?) > > My brother probably has Lupus, yet undiagnosed. > > Are you referring to a male or female loved one? > > Success or uplifting stories, they are all here. > > A chronic illness is a trip, not a destination. > > If you want a (partial) list of our posters
http://groups.google.com/groups?q=+%22Appreciation+and+Roll-Call%22+g… t.support.lupus&hl=en&selm=3C5C4CA6.86F8B65%40rogers.com&rnum=1 – Hide quoted text — Show quoted text -> > These are our sucess stories. > > Tell us more about your loved one. Is it early on in the disease? > > Or was it diagnosed due to organ problems? > > How old is the person and which type of Lupus do they have?
Response:
Hi Bev, I love your comment about not treating her like a baby. It drives me nuts when people do that. I hate it when they keep looking at me to see if I am getting tired or not feeling well. People better not say to me, "you shouldn’t be doing that." I do what I want to do because I need to feel that I am productive. Sometimes I know that I shouldn’t be doing something, but the mental health aspects are more important to me. Do you feel that way too? Regards, BJ "Beverley" <pottings…@sybercom.net> wrote in message
news:u727i2b31ksj46@corp.supernews.com… – Hide quoted text — Show quoted text -> There is no magic formula! No perfect way to live, eat or anything else. The > is a long list of foods that can actually trigger problems in some people. > Now, how much does it take to trigger a problem? A mouthful? Or a whole big > bowl? It varies. It’s sort of like the sun. Some lupies can’t handle even > the tiniest bit of sunlight. And me? I swear I’d better get about 10 > minutes a day! Now, I’m not talking about sunbathing – I’m just talking > about being in fresh air and sunshine. On the other hand the heat gets to me > in a heartbeat! Sunscreen is enough for some folks and others use special > protective clothing. Watch out for the sun streaming through the car > windows. > Pain is pain and needs to be addressed quickly. Especially in someone so > young. Usually little aches and pains aren’t exactly life threatening. > Annoying but not usually threatening. Know your own body is the best I can > give you on that. Is it a knee joint that aches or a backache right where > the kidneys are located? > I would say eat right. Lots of salads, fresh foods, stay away from the > French fries, hamburgers and caffeine & sugar -loaded sodas. All those > things your mother taught you about food – do it! > Sleep is a must. Lupies need more sleep than the rest of the folks on this > planet! > At 21 no one wants to hear that they can’t do this or that. So when Spring > break comes and everyone hits the beach – well, do it intelligently. Lots of > sunscreen, hide under the beach umbrella, drink orange juice and not > espresso on a daily basis. Hey, an espresso once in a while tastes good. So > does a beer or a Mai Tai but not 16 of them. Have fun but do it > intelligently! If not she’s apt to wind up in the local hospital. > Lots of folks log daily how they feel and what hurts. This can be helpful > for her and her doctors. > Hone the study habits, staying up all night cramming for a test just give > lupies brain fog and she won’t remember a darn thing. Extra sleep before a > big test is by far much more helpful. Keep the stress levels down. Don’t try > to carry 21 or 24 credit hours. > BTW, this is your mother talking! You want to drive her nuts? Baby her and > she’ll want to kill you! Be yourself. Don’t try to cram this all down her > throat. Suggest but don’t try to control her. Help her when she needs or > wants it. Remember she’s got to adjust and cope with this diagnosis, too. > Don’t smother her – you’ll just push her away. > Bev > "Adil Walji" <a…@ugrad.cs.ualberta.ca> wrote in message > news:Pine.BSO.4.33.0202161048280.32283-100000@csu415.cs.ualberta.ca… > > Thanks Bev, I definetly needed this message! > > If you don’t mind me asking, what are some of the signs, that we should > > look out for? I make sure that my loved one who is 21 and female, goes to > > the doctor on schedule. Is that enough? or If a certain symptom should > > appear, should we try to reschedule the appointment sooner, go to the > > hospital …. (I think everybody here might have to excuse my ignorance). > > I would love to know what your history is like? > > I think through gaining understanding, not only from the medical or > > scientific point of view, but understanding the sufferer aswell, I can > > maximize the quality of how to help my loved one? > > Thanks again Bev! > > On Sat, 16 Feb 2002, Beverley wrote: > > > Lupus is really weird. One day you wake up and there is something very > wrong > > > and it stays with you for weeks or months -then it’s gone just like it > came. > > > Or it goes away for 2 days and comes right back! Some times it is just a > > > nagging series of problems. One of our big complaints is we are sick and > > > tired of being sick and tired. > > > Over the years I’ve had some very nasty bouts with the lupus but for the > > > last few years I have managed without too much trouble. Learning what > can > > > make this disease worse and avoiding it can be a big help. Also it is > > > important to understand guilt-free naps when needed. > > > There are varying degrees with lupus and the degrees do change. It is > > > important to recognize a big problem from a little problem. Lupus SLE > will > > > attack organs and do horrible damage so don’t let something ride and > figure > > > it will go away. (Did I just say that? Me who hates going to the > doctor?) > > > Really, it is important to make sure you get the medical help when you > need > > > it. > > …
Response:
Hi Pat and thanks for you quick response. Which illnesses do you and your husband currently have (if you don’t mind me asking)? Unfortunatly, my mother suffers from Rhemtoid Arthrits and she is always looking to meet new people and share experiences with. PS. Thanks for the warning, I appreciate it! – Hide quoted text — Show quoted text -On Sat, 16 Feb 2002, Pat Meadows wrote: > On Sat, 16 Feb 2002 03:40:35 -0700, Adil Walji > <a…@ugrad.cs.ualberta.ca> wrote: > >Hello everybody, I am new to this newsgroup so i am not sure who to > >address with my request so I will post this to anybody who wants to help. > >A loved one of mine has just been diagnosed with lupus, and after reading > >a wealth of information regarding the science of this topic, i was left a > >little disheartened. So to get hopes and motivations back up to par, I was > >wondering if anybody would be willing share or show me where I can get > >some success or uplifting stories in regards to lupus that I could > >possibly share with my loved one. I would really appreaciate it. Thank > >you. > Typically, people who are dealing well with an illness – > living happily with it – don’t read support newsgroups or > mailing lists – they go on about their lives and do whatever > it is that well people do. (I think I almost forget what > well people do, for the last five years both my husband and > I have coped with chronic illnesses. Ugh.) > So you will most likely get an over-discouraging picture > here, on average the picture is brighter than it will be > here. I just want to warn you of that, so you aren’t too > disheartened. > Pat
Response:
yeah, I am all about the "Laughter is the best medicine" motto. But I think my loved one and you are in somewhat the same situation with the recent diagnosis. I guess it is a little comforting to know that she does not need to deal with this alone. Thanks Sal Hopefully things will work out for the best! – Hide quoted text — Show quoted text -On Sun, 17 Feb 2002, Sal wrote: > Hi Adil! > Welcome, the people are great here you can read it in the posts, I > always feel brighter after I have read this newsgroup, and I am just > going through the whole diagnosis and flare thing at the moment, so I > can’t really help though, I feel the same way about myself as you might > be about your loved one, I guess it is just the *shock of the new* till > we get to grips with it. > My dear friend sent me a *lupus* gift basket that he’d made up himself. > It had a big straw hat, top quality hypollergenic skin care stuff, boxes > of paracetamol, lip balm, hot/cool packs and athritis gel rubs, > aromatherapy essential oils, chewing gum, a whole bunch of stuff *lol* > it was bizarre but wonderful! > Whilst not *celebrating* the advent of a potentially chronic state of > illness, it certainly made me laugh more than anything in the past few > months and helped with a horrible week of horrible results from blood > tests. I guess you gotta have a good sense of humour! > Sal
Response:
"Adil Walji" <a…@ugrad.cs.ualberta.ca> wrote in message
news:Pine.GSO.4.33.0202161107240.29233-100000@csu804.cs.ualberta.ca… > yeah, I am all about the "Laughter is the best medicine" motto. But I > think my loved one and you are in somewhat the same situation with the > recent diagnosis. I guess it is a little comforting to know that she does > not need to deal with this alone.
Suggest she posts here. We will make her laugh as well as offering all sorts of support. Judith (Please note new address since @home is defunct)
Response:
Hi again Adil, I am so glad that you are here trying to find help for your friend. Support of family and friends is so important. It sounds like she does not have any major organ involvement. I would like to point out that perhaps she never will. There are some people who’s lupus is mild and well controlled. She may stay in that category. Yes, I have been diagnosed with lupus. The diagnosis was a long time coming. I have major blood/connective tissue problems. I also have had heart, lung, skin, and central nervous system involvement. I am on Imuran and Prednisone. I use humour to cope. I also have a rather philosophical approach to my illness and the prospect of death. I do feel a sense of loss over all the things I can no longer do. My husband and family are very supportive. I lost most of my hair during my illnesses. That got me down a bit. It sounds childish perhaps, but it helps me to get praise or a compliment when I am down on myself. It may not be right for everyone, but it works for me. It is great to have help with household duties. The house can really get me down when it looks like the home of a thousand pigs. I know this is a farm, but—-. It helps when people understand when I am too tired to go someplace. It also helps if someone takes me out for a brief time. It could be shopping for a half and hour, or just for a little drive. It gives me a change of scenary. A little gift for no reason also gives me a life. It could be a cake of nice smelling soap. Nothing fancy, just a surprise that lets me know that someone thought about me while they were out. I am sure I will think of more things later. I always say that my mind kicks in slowly. Ask me more questions, if you have them. It will twig me. BJ-in sunny Sask. "Adil Walji" <a…@ugrad.cs.ualberta.ca> wrote in message
news:Pine.BSO.4.33.0202161038090.32283-100000@csu415.cs.ualberta.ca… – Hide quoted text — Show quoted text -> The symptoms which are bothering her at the moment are: > 1) feet and legs are quite swollen > 2) occasional headaches > 3) fever > 4) fatigue > 5) her stomach is quite sensitive to medications, so she has as tendancy > to feel nausiated after taking a medication > She is only 21 and has just recently (about a week ago) been diagnosed > with Lupus. > I am almost positive there are more symptoms, but these for the moment > tend to dominate. > Are you currently diagnosed with Lupus? If possible, I would like to know > your history as well? What helps you, what do you need when your down? > …. > I am sure the questions will continue as the messages are passed. > Thanks for you help BJ! > On Sat, 16 Feb 2002, BJ wrote: > > Hi Adil, > > Welcome to the group. There are many people who lead very active lives when > > they have lupus. A lot depends on what organs are actually affected by the > > disease. I know a lady who has two children, a full time job, and is well. > > She does get tired, but with all the activities in which the children are > > involved, it is understandable. Most of us here have a lot of major > > problems. We try to be upbeat, but just the same, the facts can’t be > > avoided. Could you tell us more about your friend? We may be able to offer > > more encouragement, if we knew what problems he/she has. Feel free to talk > > about anything. > > BJ-Saskatchewan, Canada
Response:
Hi Adil > yeah, I am all about the "Laughter is the best medicine" motto. But I > think my loved one and you are in somewhat the same situation with the > recent diagnosis. I guess it is a little comforting to know that she does > not need to deal with this alone.
Definitely, and I would say extremely from her point of view. Getting the support and love mobilised is what I ‘ve been working on. It’s there, but as someone who has always done things for other people etc, I find it real hard to accept and take. Right now, I guess I worry about silly things like role reversal, who does what like shopping etc, *keeping up my end of the deal". I worry about now, the future, forever, even though things may be ok. Being reassured and reminded to take one step at a time and that it is ok and expected to ask for help. Feeling cherished by family and friends … many good coping and comforting things can come out of this. Sal
Response:
There is no magic formula! No perfect way to live, eat or anything else. The is a long list of foods that can actually trigger problems in some people. Now, how much does it take to trigger a problem? A mouthful? Or a whole big bowl? It varies. It’s sort of like the sun. Some lupies can’t handle even the tiniest bit of sunlight. And me? I swear I’d better get about 10 minutes a day! Now, I’m not talking about sunbathing – I’m just talking about being in fresh air and sunshine. On the other hand the heat gets to me in a heartbeat! Sunscreen is enough for some folks and others use special protective clothing. Watch out for the sun streaming through the car windows. Pain is pain and needs to be addressed quickly. Especially in someone so young. Usually little aches and pains aren’t exactly life threatening. Annoying but not usually threatening. Know your own body is the best I can give you on that. Is it a knee joint that aches or a backache right where the kidneys are located? I would say eat right. Lots of salads, fresh foods, stay away from the French fries, hamburgers and caffeine & sugar -loaded sodas. All those things your mother taught you about food – do it! Sleep is a must. Lupies need more sleep than the rest of the folks on this planet! At 21 no one wants to hear that they can’t do this or that. So when Spring break comes and everyone hits the beach – well, do it intelligently. Lots of sunscreen, hide under the beach umbrella, drink orange juice and not espresso on a daily basis. Hey, an espresso once in a while tastes good. So does a beer or a Mai Tai but not 16 of them. Have fun but do it intelligently! If not she’s apt to wind up in the local hospital. Lots of folks log daily how they feel and what hurts. This can be helpful for her and her doctors. Hone the study habits, staying up all night cramming for a test just give lupies brain fog and she won’t remember a darn thing. Extra sleep before a big test is by far much more helpful. Keep the stress levels down. Don’t try to carry 21 or 24 credit hours. BTW, this is your mother talking! You want to drive her nuts? Baby her and she’ll want to kill you! Be yourself. Don’t try to cram this all down her throat. Suggest but don’t try to control her. Help her when she needs or wants it. Remember she’s got to adjust and cope with this diagnosis, too. Don’t smother her – you’ll just push her away. Bev "Adil Walji" <a…@ugrad.cs.ualberta.ca> wrote in message
news:Pine.BSO.4.33.0202161048280.32283-100000@csu415.cs.ualberta.ca… – Hide quoted text — Show quoted text -> Thanks Bev, I definetly needed this message! > If you don’t mind me asking, what are some of the signs, that we should > look out for? I make sure that my loved one who is 21 and female, goes to > the doctor on schedule. Is that enough? or If a certain symptom should > appear, should we try to reschedule the appointment sooner, go to the > hospital …. (I think everybody here might have to excuse my ignorance). > I would love to know what your history is like? > I think through gaining understanding, not only from the medical or > scientific point of view, but understanding the sufferer aswell, I can > maximize the quality of how to help my loved one? > Thanks again Bev! > On Sat, 16 Feb 2002, Beverley wrote: > > Lupus is really weird. One day you wake up and there is something very wrong > > and it stays with you for weeks or months -then it’s gone just like it came. > > Or it goes away for 2 days and comes right back! Some times it is just a > > nagging series of problems. One of our big complaints is we are sick and > > tired of being sick and tired. > > Over the years I’ve had some very nasty bouts with the lupus but for the > > last few years I have managed without too much trouble. Learning what can > > make this disease worse and avoiding it can be a big help. Also it is > > important to understand guilt-free naps when needed. > > There are varying degrees with lupus and the degrees do change. It is > > important to recognize a big problem from a little problem. Lupus SLE will > > attack organs and do horrible damage so don’t let something ride and figure > > it will go away. (Did I just say that? Me who hates going to the doctor?) > > Really, it is important to make sure you get the medical help when you need > > it. > …
Response:
As there are so many folks to offer their experiences here, I will just say that you can get a significant amount of info from our FAQ. It is still somewhat under construction so you’ll find the occasional dead link or wording that needs some help… But overall it’s looking better… the new FAQ can be found at: http://www.ghg.net/schwerpt/aslfaq30.htm We’ve covered a *lot* of ground in 3.0 – but still have more to go (pregnancy, men with lupus, scleroderma…) Be sure and look at some of the URLs in Section 5 (click on "Links" at the top of the document). The FAQ is self-contained with internal references to try to make it easier to navigate and Section 5 has a slew of very good sites to check out. It sounds like her symptoms are mild at this point in which case her odds are probably *very* good for a normal or near-normal lifespan. Blessed Wishes to you both. *********************************** KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq30.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’
Response:
Well as usual everyone has been great here. We all have different stories so keep that in mind. I have more difficult case but what they all have said is true you learn to let go and you learn to pace yourself. And in my opinion these are the silver lining. It has helped all through my life to learn these things. I was focusing on alot of the wrong things before. Also I have children that are 12 and 20 and they have learned compassion from all this . And not to judge quickly. So do as everyone suggested and do the little things they mean the world. My husband will do something then say can you finish this to make me feel like I am involved and not always on sidelines I did not realize at first what he was doing but it means the world to me now. You are already ahead of the game by doing research and caring as much as you do . Lupus can really make you feel isolated. So just doing what you are doing already is wonderful Good Luck and please keep posting when ever you need to. Good Luck Cindy – Hide quoted text — Show quoted text -Beverley wrote: > Lupus is really weird. One day you wake up and there is something very wrong > and it stays with you for weeks or months -then it’s gone just like it came. > Or it goes away for 2 days and comes right back! Some times it is just a > nagging series of problems. One of our big complaints is we are sick and > tired of being sick and tired. > Over the years I’ve had some very nasty bouts with the lupus but for the > last few years I have managed without too much trouble. Learning what can > make this disease worse and avoiding it can be a big help. Also it is > important to understand guilt-free naps when needed. > There are varying degrees with lupus and the degrees do change. It is > important to recognize a big problem from a little problem. Lupus SLE will > attack organs and do horrible damage so don’t let something ride and figure > it will go away. (Did I just say that? Me who hates going to the doctor?) > Really, it is important to make sure you get the medical help when you need > it. > You failed to say how old your loved one is. In young people lupus can > ravage the body quickly and can be very dangerous, in older folks it can > sneak in and be a big problem if "parts" are wearing out on their own. But > for most of us what we deal with one week is not what we are dealing with > the next week. > Can we live normal lives? Yes – I’m not sure how normal but aside from a few > friends and family members, no one knows I have lupus. I’m not going to run > a marathon or bicycle for hours. Some days it’s all I can do to walk across > the room or tie a pair of shoe laces. But other days I function with little > trouble. I have no neon sign hanging on me that says LUPUS. But few of us do > and the biggest problem we run into is that other people don’t understand > lupus so even if we had our neon sign hanging around our necks flashing very > few people know or understand what we have. > So lupus has "hit" your mother, sister, or other family member the best > thing you can do is just be there. Be a support for that person. Take the > kids for the afternoon so your loved one can take a little guilt-free nap. > Maybe wash the car or run the vacuum cleaner. Usually we "lupies" don’t say > we can’t do it, it just doesn’t get done because it hurts too much to bend > over or we don’t have the energy. We aren’t lazy, we are tired! There is a > difference. > As mentioned before we often measure success in little increments. It can > just be getting ALL the laundry done in one day and getting it folded and > put away, attending a daughter’s girls scout meeting, baking cupcakes for > someone’s birthday or giving the dog a bath. Laughable maybe to the average > person but for us often having the energy to just get ourselves up and > dressed and into town to run errands leaves us tired and worn out. > Bev > "Adil Walji" <a…@ugrad.cs.ualberta.ca> wrote in message > news:Pine.BSO.4.33.0202160336370.15116-100000@csu321.cs.ualberta.ca… > > Hello everybody, I am new to this newsgroup so i am not sure who to > > address with my request so I will post this to anybody who wants to help. > > A loved one of mine has just been diagnosed with lupus, and after reading > > a wealth of information regarding the science of this topic, i was left a > > little disheartened. So to get hopes and motivations back up to par, I was > > wondering if anybody would be willing share or show me where I can get > > some success or uplifting stories in regards to lupus that I could > > possibly share with my loved one. I would really appreaciate it. Thank > > you.
Response:
Hello everybody, I am new to this newsgroup so i am not sure who to address with my request so I will post this to anybody who wants to help. A loved one of mine has just been diagnosed with lupus, and after reading a wealth of information regarding the science of this topic, i was left a little disheartened. So to get hopes and motivations back up to par, I was wondering if anybody would be willing share or show me where I can get some success or uplifting stories in regards to lupus that I could possibly share with my loved one. I would really appreaciate it. Thank you.
Response:
Hello Adil and welcome to another Canadian. (Alberta right?) My brother probably has Lupus, yet undiagnosed. Are you referring to a male or female loved one? Success or uplifting stories, they are all here. A chronic illness is a trip, not a destination. If you want a (partial) list of our posters http://groups.google.com/groups?q=+%22Appreciation+and+Roll-Call%22+g… These are our sucess stories. Tell us more about your loved one. Is it early on in the disease? Or was it diagnosed due to organ problems? How old is the person and which type of Lupus do they have? Any questions, ask away. Someone will reply as best they can. KCat is working on updating the FAQ If you wish to run your own queries, Google is great http://groups.google.com/advanced_group_search just key in alt.support.lupus in the newsgroup box, and whatever words/questions you have in one of the other boxes. You can sort by relevance or by (the most recent) date. HTH J – Hide quoted text — Show quoted text -Adil Walji wrote: > Hello everybody, I am new to this newsgroup so i am not sure who to > address with my request so I will post this to anybody who wants to help. > A loved one of mine has just been diagnosed with lupus, and after reading > a wealth of information regarding the science of this topic, i was left a > little disheartened. So to get hopes and motivations back up to par, I was > wondering if anybody would be willing share or show me where I can get > some success or uplifting stories in regards to lupus that I could > possibly share with my loved one. I would really appreaciate it. Thank > you.
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