Lupus FAQ » Lupus Diagnosis

update.

admin — Fri, 11 Jun 2004 00:00:00 +0000

Question:

Grace, Next time you or anyone else on the group needs blood can’t we ( the group) or a relative of ours donate blood for whoever is gonna be needing it? Does the Red Cross or whatever blood banks there are do United States to Canada or other countries? Just a thought. Hugs, Sherry "Grace Casselman" wrote in message

news:40CB9695.C71A505C@casselman.net… – Hide quoted text — Show quoted text -> Wow….mine got low during the transplant. They gave me blood several times… > Actually, I was encouraging my friends and family to give blood to replace the > bags I used…but I eventually lost count. Maybe 12 or so….? > G. > BJ wrote: > > No J. It was for my immune thrombocytopenia. That along with a honking big > > dosage of pred brought my platelets up from 6 to 23 within a couple of days. > > BJ-Sk. Canada > > "J" wrote in message > > news:40CB36AF.E3731CEF@execulink.com… > > > BJ wrote: > > > > Hi Grace, > > > > Glad to hear that you are seeing improvement. I had IVIG too. It can > > work > > > > wonders for some people. It helped to bring my platelets up from a > > > > dangerously low level. It seems they use it in a number of situations. > > Keep > > > > us posted. > > > > BJ-Sk. Canada > > > BJ the enigma, > > > Was that for your anemia? > > > There’s one type mentioned here when I follow some of the links on the > > list > > > there. > > > http://www.healthcentral.com/mhc/top/003545.cfm > > > J

Response:

In article , Sherry wrote >Grace, >Next time you or anyone else on the group needs blood can’t we ( the group) >or a relative of ours donate blood for whoever is gonna be needing it? Does >the Red Cross or whatever blood banks there are do United States to Canada >or other countries?

There was a correspondence here maybe a year ago on the question "are lupies eligible to donate blood". I think the answer was that many blood-handlers said "absolutely not", and you would need to formally declare your diagnosis and not be put out if they say "thanks, but no thanks". — Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

I don’t think people can ‘target’ blood like that; but I don’t know for sure. You can ‘bank’ blood ahead of time for an operation, though… I just like to put a ‘face’ on giving blood, so my friends, etc. know how it helped me… G. – Hide quoted text — Show quoted text -Sherry wrote: > Grace, > Next time you or anyone else on the group needs blood can’t we ( the group) > or a relative of ours donate blood for whoever is gonna be needing it? Does > the Red Cross or whatever blood banks there are do United States to Canada > or other countries? > Just a thought. > Hugs, > Sherry > "Grace Casselman" wrote in message > news:40CB9695.C71A505C@casselman.net… > > Wow….mine got low during the transplant. They gave me blood several > times… > > Actually, I was encouraging my friends and family to give blood to replace > the > > bags I used…but I eventually lost count. Maybe 12 or so….? > > G. > > BJ wrote: > > > No J. It was for my immune thrombocytopenia. That along with a honking > big > > > dosage of pred brought my platelets up from 6 to 23 within a couple of > days. > > > BJ-Sk. Canada > > > "J" wrote in message > > > news:40CB36AF.E3731CEF@execulink.com… > > > > BJ wrote: > > > > > Hi Grace, > > > > > Glad to hear that you are seeing improvement. I had IVIG too. It can > > > work > > > > > wonders for some people. It helped to bring my platelets up from a > > > > > dangerously low level. It seems they use it in a number of > situations. > > > Keep > > > > > us posted. > > > > > BJ-Sk. Canada > > > > BJ the enigma, > > > > Was that for your anemia? > > > > There’s one type mentioned here when I follow some of the links on the > > > list > > > > there. > > > > http://www.healthcentral.com/mhc/top/003545.cfm > > > > J

Response:

Makes me wonder if a lupie can donate to another lupie? For instance today it is common if someone knows they are going to have surgery that they will donate their own blood to be saved for them. But you’d probably have to be in the same area because that blood does not go through the Red Cross. Bev "Andy" wrote in message

news:R4XJ5oCyxKzAFwjy@kitzbuhel.demon.co.uk… – Hide quoted text — Show quoted text -> In article , Sherry > wrote > >Grace, > >Next time you or anyone else on the group needs blood can’t we ( the group) > >or a relative of ours donate blood for whoever is gonna be needing it? Does > >the Red Cross or whatever blood banks there are do United States to Canada > >or other countries? > There was a correspondence here maybe a year ago on the question "are > lupies eligible to donate blood". I think the answer was that many > blood-handlers said "absolutely not", and you would need to formally > declare your diagnosis and not be put out if they say "thanks, but no > thanks". > — > Andy Taylor [Chair, N E Lupus Group] > See http://www.northeastlupus.org.uk for more!

Response:

I was just curious as years ago when a friends daughter was in and accident a bunch of us went and donated blood (before SLE dx) in her name. Then when she used blood there was plenty of donated blood to cover what she needed. Like a credit account. If something like that is possible today. Then we could get our non SLE relatives and friends to donate in someones name if and when they ever need blood. Hugs, Sherry "Beverley" wrote in message

news:VD7zc.37862$TR1.17842@nwrddc01.gnilink.net… – Hide quoted text — Show quoted text -> Makes me wonder if a lupie can donate to another lupie? For instance today > it is common if someone knows they are going to have surgery that they will > donate their own blood to be saved for them. But you’d probably have to be > in the same area because that blood does not go through the Red Cross. > Bev > "Andy" wrote in message > news:R4XJ5oCyxKzAFwjy@kitzbuhel.demon.co.uk… > > In article , Sherry > > wrote > > >Grace, > > >Next time you or anyone else on the group needs blood can’t we ( the > group) > > >or a relative of ours donate blood for whoever is gonna be needing it? > Does > > >the Red Cross or whatever blood banks there are do United States to > Canada > > >or other countries? > > There was a correspondence here maybe a year ago on the question "are > > lupies eligible to donate blood". I think the answer was that many > > blood-handlers said "absolutely not", and you would need to formally > > declare your diagnosis and not be put out if they say "thanks, but no > > thanks". > > — > > Andy Taylor [Chair, N E Lupus Group] > > See http://www.northeastlupus.org.uk for more!

Response:

Yeah, when I first started getting blood, I felt quite indebted. "Go give blood," I’d tell my sisters. "I’ve used up 5 bags!" G. – Hide quoted text — Show quoted text -Sherry wrote: > I was just curious as years ago when a friends daughter was in and accident > a bunch of us went and donated blood (before SLE dx) in her name. Then when > she used blood there was plenty of donated blood to cover what she needed. > Like a credit account. > If something like that is possible today. Then we could get our non SLE > relatives and friends to donate in someones name if and when they ever need > blood. > Hugs, > Sherry > "Beverley" wrote in message > news:VD7zc.37862$TR1.17842@nwrddc01.gnilink.net… > > Makes me wonder if a lupie can donate to another lupie? For instance today > > it is common if someone knows they are going to have surgery that they > will > > donate their own blood to be saved for them. But you’d probably have to be > > in the same area because that blood does not go through the Red Cross. > > Bev > > "Andy" wrote in message > > news:R4XJ5oCyxKzAFwjy@kitzbuhel.demon.co.uk… > > > In article , Sherry > > > wrote > > > >Grace, > > > >Next time you or anyone else on the group needs blood can’t we ( the > > group) > > > >or a relative of ours donate blood for whoever is gonna be needing it? > > Does > > > >the Red Cross or whatever blood banks there are do United States to > > Canada > > > >or other countries? > > > There was a correspondence here maybe a year ago on the question "are > > > lupies eligible to donate blood". I think the answer was that many > > > blood-handlers said "absolutely not", and you would need to formally > > > declare your diagnosis and not be put out if they say "thanks, but no > > > thanks". > > > — > > > Andy Taylor [Chair, N E Lupus Group] > > > See http://www.northeastlupus.org.uk for more!

Response:

I hope you are feeling better now and had good results. Maria "Stephanie Townsend" wrote in message

news:e90a5$40ca0dbb$43653ef0$12938@msgid.meganewsservers.com… – Hide quoted text — Show quoted text -> Wow. You’ve been through the ringer! I am happy to hear that you are feeling > better – that seems like an awful lot to deal with. Good to have you back > with us! > Stephanie > "Grace Casselman" wrote in message > news:40CA0BB5.FA69938A@casselman.net… > > Okay, so I was in the hospital about 10 days…. > > Anyhow, I’m doing much better. I’m off oxygen, and my coughing and cold > > symptoms are almost gone. My lungs still have fluid in them, and I get > > short of breath, but it’s much much improved! I seem to improve a bit on > > a daily basis. > > I had something like pneumonia, but that’s pretty much cleared up, > > according to the most recent chest xray. > > I had a special IV line in, which they left in while I wait for some > > results from Edmonton — a bug sample that could be relatively harmless > > or might need pill antibiotics or could need IV antibiotics. > > Also, they found I was low in a part of the blood called immunogobulins, > > so they gave me some and will probably give me an infusion every month > > or so for awhile. The doctor said that might be part of the problem. It > > seems to me they don’t really know, but are happy I’m improving! > > I guess it will be important to see how much I improve when I finish the > > antibiotics, and then to get the results next Friday from Edmonton. > > My little son seems to have missed me. He’s following me around and > > hugging me a lot around the knees. > > Persevering, > > Grace, > > p.s. Apparently, I also have chronic bronchiolitis, bronchiectasis and > > chronic sinusitus ?? We’ll see what they say next week….At least > > symptomatically, I am doing better….

Response:

> My question(s) is/are: Is this > something that can flare up from time to time? When you said "chronic," > that was my thought.

Yeah, how things stand right now is I have lungs with damage and diminished capacity that are susceptible to infections — which will mean jumping over anything new with anibiotics right away. Right now, I’m still coughing some stuff up and I see a physiotherapist Tuesday to learn chest-clearing methods. But I don’t think anyone really knows what the state of my lungs will be after this infection is cleared up; but everyone seems to think there will be some damage. G.

Response:

> J:

Thanks for the immunogobulin info. Yes, I hope it will help! No, I didn’t get any invite… oh well, I’m not up to it, so this makes it easier! G.

Response:

> It seems they use it in a number of situations.

Right. I used to get IVIG for my polymyositis, something for my immune system to attack, to leave my muscles alone. (Remember, bananas for the Lupus gorilla?) I told the lung doctor that… "No, this time, these bananas are all for you…") G.

Response:

Oh, I’m making them, just not enough. But yeah, who knows? – Hide quoted text — Show quoted text -Beverley wrote: > Does that mean she doesn’t have these – as they were killed when they killed > everything else? Will her body make them eventually? > Bev

Response:

No J. It was for my immune thrombocytopenia. That along with a honking big dosage of pred brought my platelets up from 6 to 23 within a couple of days. BJ-Sk. Canada "J" wrote in message

news:40CB36AF.E3731CEF@execulink.com… – Hide quoted text — Show quoted text -> BJ wrote: > > Hi Grace, > > Glad to hear that you are seeing improvement. I had IVIG too. It can work > > wonders for some people. It helped to bring my platelets up from a > > dangerously low level. It seems they use it in a number of situations. Keep > > us posted. > > BJ-Sk. Canada > BJ the enigma, > Was that for your anemia? > There’s one type mentioned here when I follow some of the links on the list > there. > http://www.healthcentral.com/mhc/top/003545.cfm > J

Response:

Wow….mine got low during the transplant. They gave me blood several times… Actually, I was encouraging my friends and family to give blood to replace the bags I used…but I eventually lost count. Maybe 12 or so….? G. – Hide quoted text — Show quoted text -BJ wrote: > No J. It was for my immune thrombocytopenia. That along with a honking big > dosage of pred brought my platelets up from 6 to 23 within a couple of days. > BJ-Sk. Canada > "J" wrote in message > news:40CB36AF.E3731CEF@execulink.com… > > BJ wrote: > > > Hi Grace, > > > Glad to hear that you are seeing improvement. I had IVIG too. It can > work > > > wonders for some people. It helped to bring my platelets up from a > > > dangerously low level. It seems they use it in a number of situations. > Keep > > > us posted. > > > BJ-Sk. Canada > > BJ the enigma, > > Was that for your anemia? > > There’s one type mentioned here when I follow some of the links on the > list > > there. > > http://www.healthcentral.com/mhc/top/003545.cfm > > J

Response:

Grace, I am glad that you are feeling better. Sending hugs and Prayers.. Cindy

Response:

BJ wrote: > Hi Grace, > Glad to hear that you are seeing improvement. I had IVIG too. It can work > wonders for some people. It helped to bring my platelets up from a > dangerously low level. It seems they use it in a number of situations. Keep > us posted. > BJ-Sk. Canada

BJ the enigma, Was that for your anemia? There’s one type mentioned here when I follow some of the links on the list there. http://www.healthcentral.com/mhc/top/003545.cfm J

Response:

Hi Grace, Glad to hear that you are seeing improvement. I had IVIG too. It can work wonders for some people. It helped to bring my platelets up from a dangerously low level. It seems they use it in a number of situations. Keep us posted. BJ-Sk. Canada "Grace Casselman" wrote in message

news:40CA0BB5.FA69938A@casselman.net… – Hide quoted text — Show quoted text -> Okay, so I was in the hospital about 10 days…. > Anyhow, I’m doing much better. I’m off oxygen, and my coughing and cold > symptoms are almost gone. My lungs still have fluid in them, and I get > short of breath, but it’s much much improved! I seem to improve a bit on > a daily basis. > I had something like pneumonia, but that’s pretty much cleared up, > according to the most recent chest xray. > I had a special IV line in, which they left in while I wait for some > results from Edmonton — a bug sample that could be relatively harmless > or might need pill antibiotics or could need IV antibiotics. > Also, they found I was low in a part of the blood called immunogobulins, > so they gave me some and will probably give me an infusion every month > or so for awhile. The doctor said that might be part of the problem. It > seems to me they don’t really know, but are happy I’m improving! > I guess it will be important to see how much I improve when I finish the > antibiotics, and then to get the results next Friday from Edmonton. > My little son seems to have missed me. He’s following me around and > hugging me a lot around the knees. > Persevering, > Grace, > p.s. Apparently, I also have chronic bronchiolitis, bronchiectasis and > chronic sinusitus ?? We’ll see what they say next week….At least > symptomatically, I am doing better….

Response:

Does that mean she doesn’t have these – as they were killed when they killed everything else? Will her body make them eventually? Bev "J" wrote in message

news:40CADD27.BAEFDEF6@execulink.com… – Hide quoted text — Show quoted text -> Grace Casselman wrote: > > Okay, so I was in the hospital about 10 days…. > > Anyhow, I’m doing much better. I’m off oxygen, and my coughing and cold > > symptoms are almost gone. My lungs still have fluid in them, and I get > > short of breath, but it’s much much improved! I seem to improve a bit on > > a daily basis. > > I had something like pneumonia, but that’s pretty much cleared up, > > according to the most recent chest xray. > > I had a special IV line in, which they left in while I wait for some > > results from Edmonton — a bug sample that could be relatively harmless > > or might need pill antibiotics or could need IV antibiotics. > > Also, they found I was low in a part of the blood called immunogobulins, > > so they gave me some and will probably give me an infusion every month > > or so for awhile. > First I’ve heard of this really (in specifics), but apparently the > treatments (you had) can affect them. > http://www.lymphomation.org/tests-immunoglobulins.htm > Immunoglobulin A (IgA) is a type of antibody that protects against > infections of the mucous membranes lining the mouth, airways, and digestive > tract. > IgG, immunoglobulin G – the major antibody found in the blood that can enter > tissues. It coats germs, helping other cells to seek and destroy them. > IgM, immunoglobulin M – an antibody that remains in the bloodstream where it > can kill bacteria that enter the blood stream. " > So hopefully with each infusion, and the antibiotics, you’ll soon start to > see improvement. > > The doctor said that might be part of the problem. It > > seems to me they don’t really know, but are happy I’m improving! > > I guess it will be important to see how much I improve when I finish the > > antibiotics, and then to get the results next Friday from Edmonton. > > My little son seems to have missed me. He’s following me around and > > hugging me a lot around the knees. > Yes, your absences must be affecting him. On the other hand, I recall riding > my son on my knee after he’d do that. > That made him giggle.. H’s too tall for that now. In fact, I remember one > day when I turned to him and thought "what happened? now I have to look up" > (he grew so fast in one spurt. > Hopefully he’ll have a huge growth spurt, and end up next hugging your waist > ! > No more, knocked off your knees for you, fine lady…please. > > Persevering, > > Grace, > > p.s. Apparently, I also have chronic bronchiolitis, bronchiectasis and > > chronic sinusitus ?? We’ll see what they say next week….At least > > symptomatically, I am doing better…. > Perhaps the above explains because brocnchio and brochie say "airway" to me. > Hugs and with time, may you regain strength. > Hey Grace, did you ever get the invite ? I emailed them (the web page that > you’d posted way back when) but they never replied. I think that’s rude ! > J

Response:

Good to hear this, Grace. This sounds like they have at least found the causes for the chronic lung problems. My question(s) is/are: Is this something that can flare up from time to time? When you said "chronic," that was my thought. Or, are they hoping the treatment (whichever one’s decided upon) will put an end to it altogether? Hugs, Maggie

Response:

- Hide quoted text — Show quoted text -Grace Casselman wrote: > Okay, so I was in the hospital about 10 days…. > Anyhow, I’m doing much better. I’m off oxygen, and my coughing and cold > symptoms are almost gone. My lungs still have fluid in them, and I get > short of breath, but it’s much much improved! I seem to improve a bit on > a daily basis. > I had something like pneumonia, but that’s pretty much cleared up, > according to the most recent chest xray. > I had a special IV line in, which they left in while I wait for some > results from Edmonton — a bug sample that could be relatively harmless > or might need pill antibiotics or could need IV antibiotics. > Also, they found I was low in a part of the blood called immunogobulins, > so they gave me some and will probably give me an infusion every month > or so for awhile.

First I’ve heard of this really (in specifics), but apparently the treatments (you had) can affect them. http://www.lymphomation.org/tests-immunoglobulins.htm Immunoglobulin A (IgA) is a type of antibody that protects against infections of the mucous membranes lining the mouth, airways, and digestive tract. IgG, immunoglobulin G – the major antibody found in the blood that can enter tissues. It coats germs, helping other cells to seek and destroy them. IgM, immunoglobulin M – an antibody that remains in the bloodstream where it can kill bacteria that enter the blood stream. " So hopefully with each infusion, and the antibiotics, you’ll soon start to see improvement. > The doctor said that might be part of the problem. It > seems to me they don’t really know, but are happy I’m improving! > I guess it will be important to see how much I improve when I finish the > antibiotics, and then to get the results next Friday from Edmonton. > My little son seems to have missed me. He’s following me around and > hugging me a lot around the knees.

Yes, your absences must be affecting him. On the other hand, I recall riding my son on my knee after he’d do that. That made him giggle.. H’s too tall for that now. In fact, I remember one day when I turned to him and thought "what happened? now I have to look up" (he grew so fast in one spurt. Hopefully he’ll have a huge growth spurt, and end up next hugging your waist ! No more, knocked off your knees for you, fine lady…please. > Persevering, > Grace, > p.s. Apparently, I also have chronic bronchiolitis, bronchiectasis and > chronic sinusitus ?? We’ll see what they say next week….At least > symptomatically, I am doing better….

Perhaps the above explains because brocnchio and brochie say "airway" to me. Hugs and with time, may you regain strength. Hey Grace, did you ever get the invite ? I emailed them (the web page that you’d posted way back when) but they never replied. I think that’s rude ! J

Response:

Okay, so I was in the hospital about 10 days…. Anyhow, I’m doing much better. I’m off oxygen, and my coughing and cold symptoms are almost gone. My lungs still have fluid in them, and I get short of breath, but it’s much much improved! I seem to improve a bit on a daily basis. I had something like pneumonia, but that’s pretty much cleared up, according to the most recent chest xray. I had a special IV line in, which they left in while I wait for some results from Edmonton — a bug sample that could be relatively harmless or might need pill antibiotics or could need IV antibiotics. Also, they found I was low in a part of the blood called immunogobulins, so they gave me some and will probably give me an infusion every month or so for awhile. The doctor said that might be part of the problem. It seems to me they don’t really know, but are happy I’m improving! I guess it will be important to see how much I improve when I finish the antibiotics, and then to get the results next Friday from Edmonton. My little son seems to have missed me. He’s following me around and hugging me a lot around the knees. Persevering, Grace, p.s. Apparently, I also have chronic bronchiolitis, bronchiectasis and chronic sinusitus ?? We’ll see what they say next week….At least symptomatically, I am doing better….

Response:

Wow. You’ve been through the ringer! I am happy to hear that you are feeling better – that seems like an awful lot to deal with. Good to have you back with us! Stephanie "Grace Casselman" wrote in message

Response:

Just a reminder to you… Take it one day at a time.. You really have been through allot. Remember that everything can wait but just take care of yourself and spend time with the little one. These are the times when we really can see what is most important in life. "Grace Casselman" wrote in message

Response:

Hospital again!

admin — Thu, 20 May 2004 00:00:00 +0000

Question:

Thanks J, Hugs to you too!! You are all so great friends. Bin

Response:

Hi BJ, Thanks for your positive notes and yes, I am trying to be positive. I try really hard to be happy and active in the office but by the time I reach home I feel out of energy, waking up to morning stiffness. I get good days sometime but it never last. I am getting pain all over, I don’t even know if it is normal for lupus or it is in my mind?? I am going crazy. I take my medication on time but still…. it comes… I think I am losing my mind…as I am typing this. Bin

Response:

Thank you for listening, I feel so down. I feel so useless. I am having this vision that everyone around me just think I am lazy……I am lucky to have a bf who have been like a god-sent angel but I just think he deserves better. Again, thanks, and yes, it is wonderful to have people who actually understands. Bin

Response:

I am so sorry you are having such a rough time. Your pain is real. This is something I often question myself (especially since my diagnosis is fuzzy). And you are not lazy. My mantra this week is that "I am doing the best I can with the body God gave me" Even when others don’t understand, for some silly reason this phrase seems to give me strength. I hope you are doing better soon and get the help, care and compassion you need. I said a prayer for you today. Stephanie "hooi-bin" wrote in message

news:40b08f41_1@news.tm.net.my… – Hide quoted text — Show quoted text -> Hi BJ, > Thanks for your positive notes and yes, I am trying to be positive. I try > really hard to be happy and active in the office but by the time I reach > home I feel out of energy, waking up to morning stiffness. I get good days > sometime but it never last. I am getting pain all over, I don’t even know if > it is normal for lupus or it is in my mind?? I am going crazy. I take my > medication on time but still…. it comes… > I think I am losing my mind…as I am typing this. > Bin

Response:

Thank you stephanie, it is so sweet of you. I had a good day today. The company that I worked for decided to dispose some ‘working condition’ old monitors and I managed to convince them to donate to SPCA!! Also, I went out for a nice dinner with my colleague today, and I found alfalfa (dunno if i spelt it right) with the salad!!!! Heheheh…..They asked me why I cannot eat these green little sprout like veg., I told them it will kill me!! hahaha, they took it seriously. Anyway, I did clarify that it is a joke, just a general advise for lupies not to take alfalfa due to some reasons that I do not know, yet. It is a good day today and I am really happy. The office was re-carpeting and I did nothing, except munching on cookies the whole afternoon!!!! Stress free day!!! And tomorrow is pay day! now i see a brighter week ahead!! Thanks for your wonderful prayers! It worked!! ((((stephanie)))) Lov, Bin "Stephanie Townsend" wrote in message

news:2733a$40b3eb30$4069d0fc$18583@msgid.meganewsservers.com… – Hide quoted text — Show quoted text -> I am so sorry you are having such a rough time. Your pain is real. This is > something I often question myself (especially since my diagnosis is fuzzy). > And you are not lazy. My mantra this week is that "I am doing the best I can > with the body God gave me" Even when others don’t understand, for some > silly reason this phrase seems to give me strength. I hope you are doing > better soon and get the help, care and compassion you need. I said a prayer > for you today. > Stephanie > "hooi-bin" wrote in message > news:40b08f41_1@news.tm.net.my… > > Hi BJ, > > Thanks for your positive notes and yes, I am trying to be positive. I try > > really hard to be happy and active in the office but by the time I reach > > home I feel out of energy, waking up to morning stiffness. I get good days > > sometime but it never last. I am getting pain all over, I don’t even know > if > > it is normal for lupus or it is in my mind?? I am going crazy. I take my > > medication on time but still…. it comes… > > I think I am losing my mind…as I am typing this. > > Bin

Response:

Hello Michael, I am glad you have your medical covered. Unlike mine, the company can decide to chop it off anytime. The insurances rejected me on ‘pre-existing’ conditions and things are not what I would like it to be. Oh well, it is like this in Malaysia. Lupus is sort of ‘unheard’ in Malaysia, medication is not up to date and everything is expensive. I hate it. I hate myself for having this, I am a burden to everyone, to my family, my boyfriend and even my cats. I hate myself, I have lost all the energy that I used to have, dunno where on earth has it disappeared to. I am going to see the rheumy again and get charged for a bomb. I just wish it (lupus) would just disappear. I want myself back! Bin

Response:

Oh Bin! You sound so sad and sick of it all and I don’t blame you one bit! I have felt that way so many times and all I can say is that it will get better! …. I am sending you well wishes for a better day with happiness and light. btw I too have cats and I don’t believe for a minute that they feel you are a burden… I find that mine just love it when I am too sick to ‘move’ cause then it is purr/cuddle time for them and the more the better! Maybe try to take advantage of your bad times with some quiet interest and try not to feel as if you have to be productive all the time; I know that when I start getting on myself about not being able to do as much due to lack of energy that it actually makes my illness worse! – mental stressors are as bad as physical ones!- "LUPUS is actually quite limited!, It cannot cripple LOVE, It cannot shatter HOPE, It cannot corrode FAITH, It cannot destroy PEACE, It cannot kill FRIENDSHIPS, It cannot suppress MEMORIES, It cannot silence COURAGE, It cannot invade the SOUL, It cannot conquer the SPIRIT! So what is left ?? … nothing that matters!" Hugs to you! from Shelagh http://members.shaw.ca/tiderington – Hide quoted text — Show quoted text -"hooi-bin" wrote in message > I am glad you have your medical covered. Unlike mine, the company can decide > to chop it off anytime. The insurances rejected me on ‘pre-existing’ > conditions and things are not what I would like it to be. Oh well, it is > like this in Malaysia. Lupus is sort of ‘unheard’ in Malaysia, medication is > not up to date and everything is expensive. I hate it. I hate myself for > having this, I am a burden to everyone, to my family, my boyfriend and even > my cats. > I hate myself, I have lost all the energy that I used to have, dunno where > on earth has it disappeared to. I am going to see the rheumy again and get > charged for a bomb. I just wish it (lupus) would just disappear. I want > myself back! > Bin

Response:

- Hide quoted text — Show quoted text -hooi-bin wrote: > Hello Michael, > I am glad you have your medical covered. Unlike mine, the company can decide > to chop it off anytime. The insurances rejected me on ‘pre-existing’ > conditions and things are not what I would like it to be. Oh well, it is > like this in Malaysia. Lupus is sort of ‘unheard’ in Malaysia, medication is > not up to date and everything is expensive. I hate it. I hate myself for > having this, I am a burden to everyone, to my family, my boyfriend and even > my cats. > I hate myself, I have lost all the energy that I used to have, dunno where > on earth has it disappeared to. I am going to see the rheumy again and get > charged for a bomb. I just wish it (lupus) would just disappear. I want > myself back! > Bin

( ( ( Bin ) ) ) I’m sorry you feel so alone over there and they give you such a tough time. J

Response:

Michael Roeper wrote: > It makes me feel better > and not quite so alone in the world. > ( ( ( Michael and Mugsey ) ) )

Response:

Hi Bin, It must be even tougher for you there. Your thoughts about yourself and your illness are ones that we all feel. However, as you say, you live in a country where lupus is not very familiar to people. There is lack of understanding here in Canada too. Even some of my friends don’t really know what it is all about. I get down on myself too sometimes. Day to day living can be so hard for us. It is not always easy to find our purpose in life. I can’t say that I have really found it yet. I feel down because of all the things I loved that are lost now. I think we have to keep searching though. It takes a lot of time, with good days and bad. Try to find the positves and focus on them. That is the only thing we can do. BJ-Sk. Canada "hooi-bin" wrote in message

news:40aea9e6_1@news.tm.net.my… – Hide quoted text — Show quoted text -> Hello Michael, > I am glad you have your medical covered. Unlike mine, the company can decide > to chop it off anytime. The insurances rejected me on ‘pre-existing’ > conditions and things are not what I would like it to be. Oh well, it is > like this in Malaysia. Lupus is sort of ‘unheard’ in Malaysia, medication is > not up to date and everything is expensive. I hate it. I hate myself for > having this, I am a burden to everyone, to my family, my boyfriend and even > my cats. > I hate myself, I have lost all the energy that I used to have, dunno where > on earth has it disappeared to. I am going to see the rheumy again and get > charged for a bomb. I just wish it (lupus) would just disappear. I want > myself back! > Bin

Response:

You know, I don’t really have a feel for how sick I am. Am I "sicker than most," or am I "real sick," or am I "deathly ill." I still feel guilty for not working and earning my keep better. Fortunstely, I have a good income so I don;t starve to death but I still have a lot of denial about my illness. It’s the wierdest thing actually. Got my Sosical Security SSI "lump sum" a couple of weeks ago and FINALLY got my disability award letter today. The one that say I’m actually sick and disabled. It also says I am on Medicare now which, I guess, is a really good thing. Now I have to study up on that some more. Still, I spent some time this wek thinking about some of the things I’ll never do again…..run, swim (probably), ski, chase girls….kinda depresing I would think. Does everyone out there in Lupus land go thru some of that? mean, I don’t spend a lot of time thinking about it. Once in a while my son Ryan will gove me a look like I’m really sick or he’s afraid I’m gonna die or something like that. He atually will say something that sounds like he’s angry that I’m so sick. I don;t quite know how to respond to that. It makes me feel helpless. I realized the othe day that I didn’t like being sick (weak) in front of my boys. I must look pitifull, so fat and puffy and weak. I’ve always been the fit, fast, quick, well groomed and "thin" one (both my kid’s have weight problems). Nw I’m such a mess, I think. Oh well. I try and feel the gratitude of still being here and I also try and remember that there those out there who have it far worse then me. It does seem like that’s how I’m supposed to feel about it all. I now have a housekeeper/yardman/personal assistant. She does pretty much anything I need done and I’ve gotten to the point where I don’t need to be here or tel her what to do. She just does it. She found out I was coming home from the hospital and the house was clean and the sheets were fresh and so on. I need to actually have her do more, like the shopping and stuff that I’m still doing myself that I shouldn’t be doing. I went grocery shopping last night and was surprised to see that what was in the cart was pretty healthy stuff. Now, 40% of my grocery shopping is done in the produce/veg area of the store and not the baking isle or meat department. I’m eating a lot healthier and am trying to lose some of the weight. I’ve actually dropped 16 pounds in the past 2 weeks by cutting out some of the huge portions. It was still healthy stuf but gawd there was a lot of it. I;ve learned some really unhealthy eating habits while on the Prednisone and now that I’m tapering off that (and on the Cytoxan) I hope to lose it all and be back to my usual 190 – 200 pounds t the end of the year. Boy, wouldn’t that be nice?? (I was 265….am 249 this morning). I can "bounce" 7 or 8 pounds in a day and I’ve been holding a huge amount of water lately. Well. That’s enough sniveling from me. I hope everyone is doing well and thanks everyone for such nice responses to my posts! It makes me feel better and not quite so alone in the world. Michael and Mugsey

Response:

So sorry to learn of this, Michael. You’ve definitely had enough problems for several lifetimes. I’ll be praying for you….Maggie

Response:

"Michael Roeper" wrote in message … > Well, I just got outa the hospital again. If it just seems like 3 weeks > since I was in, well, it was.

Michael, I’m so sorry that you are having to "bunk" at the hospital so much this month, and be in so much pain. Are your PE’s life-threatening? Where do the clots come from? Take all the pampering your family and hired help will give you and get better! Gretchen

Response:

So sorry to hear you were booked in again… what have you got going at that hospital anyhow?…. pretty nurses?…. good medications?…. something keeps you coming back for more LOL!! Kidding of course… and sending tons of get well wishes your way so that you can feel really better real soon! I wouldn’t wish what you are going through on my worst enemy… you need to rant so rant away and we will all support you… just get better will you! We need your input here with posts and you can’t when you feel so bad… so wishing you well with hugs from Shelagh…. (at least Mugsey is a happy pup whether or not you are well… that has to be a plus ay?) – Hide quoted text — Show quoted text -"Michael Roeper" wrote in message > Well, I just got outa the hospital again. If it just seems like 3 weeks > since I was in, well, it was. > Had another pulmonary embolism "event." I thought those were behind me by > now but I guess not. I haven’t had a PE since about 2 years ago. This was a > pretty painfull one as PE’s go (well, PE’s for me anyway). I was in such > pain that I had to try 5 times to dial the phone to get Sharon over here to > haul me in. My son is installing speed dial in my phone now. That should > make it easier if I get into trouble again. > Mugsey is fine. She looks forward to me almost dying as she get’s to go > spend time with her "brother" Woody. (Woody is Sharon’s dog, Sharon is my > 1st ex-wife). > (I finally got a smart, pretty nurse who was generous with the Morphine and > they send me home! My life sucks!). > Anyway, I’m gonna live. I was fortunate I got all my bills paid the night > before (Monday) and all my errands were run so I get to be a lay-about for a > while. You know, the kid’s are better at fussing over me when I get sick, > but I try not to take advantage of the situation. I am so tired of being so > sick. It seems like I’ve been sick for so long and I can’t help but feel a > little discouraged from time to time. I try not to because it upsets the > family but I don’t have to many I can snivel and whine to. > Let me ask you this: The housekeeper has to take the sniveling, doesn’t > she??? > So that where I been. I’ll try and give an update in a few days but I’m > pretty weak for some reason and in a phenominal amount of pain. I’d > forgotten how these suckers hurt. I can’t remember feeling so bad overall > from so many different things. > Hope everyone is doing well and feeling good. It’s my month to be sick so > the rest of you can be well. > Enjoy! > Michael

Response:

Hi Michael, I am glad to hear that you are going to live. You sure keep everyone at the hospital busy, don’t you. I hope that pain eases up soon. Take good care of yourself. We all want you well. BJ-Sk. Canada "Michael Roeper" wrote in message

news:WGcrc.479$JC5.139647@attbi_s54… – Hide quoted text — Show quoted text -> Well, I just got outa the hospital again. If it just seems like 3 weeks > since I was in, well, it was. > Had another pulmonary embolism "event." I thought those were behind me by > now but I guess not. I haven’t had a PE since about 2 years ago. This was a > pretty painfull one as PE’s go (well, PE’s for me anyway). I was in such > pain that I had to try 5 times to dial the phone to get Sharon over here to > haul me in. My son is installing speed dial in my phone now. That should > make it easier if I get into trouble again. > Mugsey is fine. She looks forward to me almost dying as she get’s to go > spend time with her "brother" Woody. (Woody is Sharon’s dog, Sharon is my > 1st ex-wife). > (I finally got a smart, pretty nurse who was generous with the Morphine and > they send me home! My life sucks!). > Anyway, I’m gonna live. I was fortunate I got all my bills paid the night > before (Monday) and all my errands were run so I get to be a lay-about for a > while. You know, the kid’s are better at fussing over me when I get sick, > but I try not to take advantage of the situation. I am so tired of being so > sick. It seems like I’ve been sick for so long and I can’t help but feel a > little discouraged from time to time. I try not to because it upsets the > family but I don’t have to many I can snivel and whine to. > Let me ask you this: The housekeeper has to take the sniveling, doesn’t > she??? > So that where I been. I’ll try and give an update in a few days but I’m > pretty weak for some reason and in a phenominal amount of pain. I’d > forgotten how these suckers hurt. I can’t remember feeling so bad overall > from so many different things. > Hope everyone is doing well and feeling good. It’s my month to be sick so > the rest of you can be well. > Enjoy! > Michael

Response:

Well, I just got outa the hospital again. If it just seems like 3 weeks since I was in, well, it was. Had another pulmonary embolism "event." I thought those were behind me by now but I guess not. I haven’t had a PE since about 2 years ago. This was a pretty painfull one as PE’s go (well, PE’s for me anyway). I was in such pain that I had to try 5 times to dial the phone to get Sharon over here to haul me in. My son is installing speed dial in my phone now. That should make it easier if I get into trouble again. Mugsey is fine. She looks forward to me almost dying as she get’s to go spend time with her "brother" Woody. (Woody is Sharon’s dog, Sharon is my 1st ex-wife). (I finally got a smart, pretty nurse who was generous with the Morphine and they send me home! My life sucks!). Anyway, I’m gonna live. I was fortunate I got all my bills paid the night before (Monday) and all my errands were run so I get to be a lay-about for a while. You know, the kid’s are better at fussing over me when I get sick, but I try not to take advantage of the situation. I am so tired of being so sick. It seems like I’ve been sick for so long and I can’t help but feel a little discouraged from time to time. I try not to because it upsets the family but I don’t have to many I can snivel and whine to. Let me ask you this: The housekeeper has to take the sniveling, doesn’t she??? So that where I been. I’ll try and give an update in a few days but I’m pretty weak for some reason and in a phenominal amount of pain. I’d forgotten how these suckers hurt. I can’t remember feeling so bad overall from so many different things. Hope everyone is doing well and feeling good. It’s my month to be sick so the rest of you can be well. Enjoy! Michael

Response:

hello again everyone im back :-)

admin — Sat, 10 Apr 2004 00:00:00 +0000

Question:

Hi everyone… I dont know if any of you remember me but my name is Mel and I was living in france until recently but I have now moved back to the UK…. How is everyone? I am fine and my lupus is ok, its still under control most of the time but I have also taken the big step and given up smoking Mair did you move in the end to the log cabin? Lots of love Mel xxxx

Response:

Hi Mel, I certainly remember you. It is good to see you back with us again. I am waiting for company for Easter. I think a lot of people are busy this weekend because of the holiday. You may have to wait a bit for replies. I will update you later, if I get a chance. BJ-Sk. Canada "mel angel" wrote in message

news:c59ben$j2u$1@newsg3.svr.pol.co.uk… – Hide quoted text — Show quoted text -> Hi everyone… > I dont know if any of you remember me but my name is Mel and I was living in > france until recently but I have now moved back to the UK…. > How is everyone? I am fine and my lupus is ok, its still under control most > of the time but I have also taken the big step and given up smoking > Mair did you move in the end to the log cabin? > Lots of love > Mel > xxxx

Response:

In article , mel angel wrote >Hi everyone… >I dont know if any of you remember me but my name is Mel and I was living in >france until recently but I have now moved back to the UK….

If you want to pick up with a Lupus UK group, ring 01708 731 251 — Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

Hi again Mel )) Yes we rememeber you. Happy for your health . I remember you talking of heat costs. Bruce On. " Gee I remembered something " "mel angel" wrote in message

Response:

mel angel wrote: > Hi everyone… > I dont know if any of you remember me but my name is Mel and I was living in > france until recently but I have now moved back to the UK…. > How is everyone? I am fine and my lupus is ok, its still under control most > of the time but I have also taken the big step and given up smoking > Mair did you move in the end to the log cabin? > Lots of love > Mel > xxxx

Hello Melanie, Welcome back ! Congratulations on stopping smoking. I remember you, your diagnosis was made by Dr Hughes Mair’s move was not to be unfortunately. She still has Pigmet with her and who knows, perhaps this year she can him over to visit you in the UK. You’re the movingest person I’ve ever seen on this newsgroup ) I’m glad to hear that your lupus is doing okay. Hope to hear more from you, Hugs J

Response:

mel angel wrote in message: > Hi everyone… > I dont know if any of you remember me but my name is Mel and I was living in > france until recently but I have now moved back to the UK…. > How is everyone? I am fine and my lupus is ok, its still under control most > of the time but I have also taken the big step and given up smoking > Mair did you move in the end to the log cabin? > Lots of love > Mel

Hey there Mel! Haven’t heard from you for awhile…. how come you are back in the UK? or maybe I should say why did you go to France in the first place? Happy to hear you managed to quit the cancerstick! such a hard thing to do so good for you!! I am also glad that you are feeling so well… what are you doing to make that happen? Share with all of us, please!? Continued good health wishes to you from Shelagh

Response:

Hi Mel! Yes, I too, remember you. When we last heard from you, you had contracted a cold/flu & your daughter had recently been ill as well. I got worried & emailed you. I’m so glad you’re okay, you lil’ booger. : ) You were suppose to parcel them kids over to see some snow, but we’ll have to wait til next year now. I’m glad you’re back with us! You were missed, as you can see. Don’t you disappear again, k? Hugs, Maggie

Response:

I forgot to congratulate you. That’s a great accomplishment! I hope you see many health benefits from giving up the cigarettes. HugsAgain, Maggie

Response:

Welcome back. Quit smoking – that’s great. Wish I could but then I have so few habits why give up one I enjoy. LOL What made you move to UK? Where are you, north, south, east or west? Bev "mel angel" wrote in message

Response:

Beverley wrote: > Quit smoking – that’s great. Wish I could but then I have so few habits why > give up one I enjoy. LOL

Maybe acupuncture. I think some neighbours of mine (years ago) were having something done to their ears (pins). I remember one pulling on one of her ears everytime she got an urge. It’s been so long ago that I can’t remember if they quit or not. I suppose there’s logic to that, it keeps the hands busy doing something else, but just think of it, if someone does it too long, their earlobes could be hanging down to their knees by now J

Response:

Hi BJ, I hope you have a lovely weekend Mel xxxx "BJ" wrote in message

news:107getpnje48jb5@corp.supernews.com… – Hide quoted text — Show quoted text -> Hi Mel, > I certainly remember you. It is good to see you back with us again. I am > waiting for company for Easter. I think a lot of people are busy this > weekend because of the holiday. You may have to wait a bit for replies. I > will update you later, if I get a chance. > BJ-Sk. Canada > "mel angel" wrote in message > news:c59ben$j2u$1@newsg3.svr.pol.co.uk… > > Hi everyone… > > I dont know if any of you remember me but my name is Mel and I was living > in > > france until recently but I have now moved back to the UK…. > > How is everyone? I am fine and my lupus is ok, its still under control > most > > of the time but I have also taken the big step and given up smoking > > Mair did you move in the end to the log cabin? > > Lots of love > > Mel > > xxxx

Response:

Hi Bruce, lol you remembered then whe I was moaning about the wood for the wood burning fire over the winter period lol.. guess what?? I have central heating here rofl… Mel xxxx "Bruce On." wrote in message

news:JoZdc.71597$Bk31.47568@twister01.bloor.is.net.cable.rogers.com… – Hide quoted text — Show quoted text -> Hi again Mel )) > Yes we rememeber you. Happy for your health . > I remember you talking of heat costs. > Bruce On. " Gee I remembered something " > "mel angel" wrote in message > news:c59ben$j2u$1@newsg3.svr.pol.co.uk… > > Hi everyone… > > I dont know if any of you remember me but my name is Mel and I was living > in > > france until recently but I have now moved back to the UK…. > > How is everyone? I am fine and my lupus is ok, its still under control > most > > of the time but I have also taken the big step and given up smoking > > Mair did you move in the end to the log cabin? > > Lots of love > > Mel > > xxxx

Response:

Hi Maggie, I can still parcel them up if ya want me to lol… Me and rhia were pretty ill back then. I had a really bad flu and she ended up with gasterentitus (spelling) or something like that lol… Dont worry I wont go anywhere again Lots of love Mel xxxx wrote in message

news:10513-4078713C-134@storefull-3216.bay.webtv.net… – Hide quoted text — Show quoted text -> Hi Mel! > Yes, I too, remember you. When we last heard from you, you had > contracted a cold/flu & your daughter had recently been ill as well. I > got worried & emailed you. I’m so glad you’re okay, you lil’ booger. : > ) You were suppose to parcel them kids over to see some snow, but we’ll > have to wait til next year now. > I’m glad you’re back with us! You were missed, as you can see. Don’t > you disappear again, k? > Hugs, > Maggie

Response:

Thanks hun I have seen the financial side to it already with 2 dinners out and saving for a holiday … Mel xxxx wrote in message

news:10512-407871CB-621@storefull-3216.bay.webtv.net… – Hide quoted text — Show quoted text -> I forgot to congratulate you. That’s a great accomplishment! I hope > you see many health benefits from giving up the cigarettes. > HugsAgain, > Maggie

Response:

Hi J, Yep Dr Hughes made my diagnosis. Bless him he is like a grandfather type figure.. Mair would always be welcome here any of you would Lots of love Mel xxxx "J" wrote in message

news:40786CC5.A6496818@execulink.com… – Hide quoted text — Show quoted text -> mel angel wrote: > > Hi everyone… > > I dont know if any of you remember me but my name is Mel and I was living in > > france until recently but I have now moved back to the UK…. > > How is everyone? I am fine and my lupus is ok, its still under control most > > of the time but I have also taken the big step and given up smoking > > Mair did you move in the end to the log cabin? > > Lots of love > > Mel > > xxxx > Hello Melanie, > Welcome back ! Congratulations on stopping smoking. > I remember you, your diagnosis was made by Dr Hughes > Mair’s move was not to be unfortunately. > She still has Pigmet with her and who knows, perhaps this year she can him over > to visit you in the UK. > You’re the movingest person I’ve ever seen on this newsgroup ) > I’m glad to hear that your lupus is doing okay. > Hope to hear more from you, > Hugs > J

Response:

Hi Shelagh, we thought a move would be good for us but we just missed home so much so came back… I think the lupus is a joint thing of giving up smoking and feeling happy as well.. perhaps im not seeing the lupus in a way that I used to because im happy? weird lol… Lots of love Mel xxxx "Shelagh" wrote in message

news:Mi_dc.73759$oR5.57640@pd7tw3no… – Hide quoted text — Show quoted text -> mel angel wrote in message: > > Hi everyone… > > I dont know if any of you remember me but my name is Mel and I > was living in > > france until recently but I have now moved back to the UK…. > > How is everyone? I am fine and my lupus is ok, its still under > control most > > of the time but I have also taken the big step and given up > smoking > > Mair did you move in the end to the log cabin? > > Lots of love > > Mel > Hey there Mel! Haven’t heard from you for awhile…. how come you > are back in the UK? or maybe I should say why did you go to > France in the first place? > Happy to hear you managed to quit the cancerstick! such a hard > thing to do so good for you!! > I am also glad that you are feeling so well… what are you doing > to make that happen? Share with all of us, please!? > Continued good health wishes to you > from Shelagh

Response:

Hi Bev, I am back in the town I grew up in.. Hastings which is south east 1066 country…. Are you in the uk? Lots of love Mel xxxx "Beverley" wrote in message

news:1f2ec.21160$hd3.5396@nwrddc03.gnilink.net… – Hide quoted text — Show quoted text -> Welcome back. > Quit smoking – that’s great. Wish I could but then I have so few habits why > give up one I enjoy. LOL > What made you move to UK? Where are you, north, south, east or west? > Bev > "mel angel" wrote in message > news:c59ben$j2u$1@newsg3.svr.pol.co.uk… > > Hi everyone… > > I dont know if any of you remember me but my name is Mel and I was living > in > > france until recently but I have now moved back to the UK…. > > How is everyone? I am fine and my lupus is ok, its still under control > most > > of the time but I have also taken the big step and given up smoking > > Mair did you move in the end to the log cabin? > > Lots of love > > Mel > > xxxx

Response:

I am using the patches and Zyban and nicorette chewing gum lol… Lots of love Mel xxx "J" wrote in message

news:40792375.C8AD62ED@execulink.com… – Hide quoted text — Show quoted text -> Beverley wrote: > > Quit smoking – that’s great. Wish I could but then I have so few habits why > > give up one I enjoy. LOL > Maybe acupuncture. I think some neighbours of mine (years ago) were having > something done to their ears (pins). I remember one pulling on one of her ears > everytime she got an urge. > It’s been so long ago that I can’t remember if they quit or not. I suppose > there’s logic to that, it keeps the hands busy doing something else, but just > think of it, if someone does it too long, their earlobes could be hanging down > to their knees by now > J

Response:

"mel angel" wrote in message

| Hi Shelagh, | we thought a move would be good for us but we just missed home so much so | came back… | I think the lupus is a joint thing of giving up smoking and feeling happy as | well.. perhaps im not seeing the lupus in a way that I used to because im | happy? weird lol… | Lots of love | Mel | xxxx Oh no, not weird at all, terrific lol! I too am happier here where we live since MOTH’s retiring, and it has made a great impact on my lupus as well, for the good! Continued good health wishes to you! hugs from Shelagh

Response:

In article <40792375.C8AD6…@execulink.com>, J wrote >Maybe acupuncture. I think some neighbours of mine (years ago) were having >something done to their ears (pins). I remember one pulling on one of her ears >everytime she got an urge.

Better than a cold shower, I suppose… — Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

No I’m across the pond in the USA. I spent many a summer visiting with family friends over there. Bev "mel angel" wrote in message

news:c5bglr$e47$1@newsg3.svr.pol.co.uk… – Hide quoted text — Show quoted text -> Hi Bev, > I am back in the town I grew up in.. Hastings which is south east 1066 > country…. > Are you in the uk? > Lots of love > Mel > xxxx > "Beverley" wrote in message > news:1f2ec.21160$hd3.5396@nwrddc03.gnilink.net… > > Welcome back. > > Quit smoking – that’s great. Wish I could but then I have so few habits > why > > give up one I enjoy. LOL > > What made you move to UK? Where are you, north, south, east or west? > > Bev > > "mel angel" wrote in message > > news:c59ben$j2u$1@newsg3.svr.pol.co.uk… > > > Hi everyone… > > > I dont know if any of you remember me but my name is Mel and I was > living > > in > > > france until recently but I have now moved back to the UK…. > > > How is everyone? I am fine and my lupus is ok, its still under control > > most > > > of the time but I have also taken the big step and given up smoking > > > Mair did you move in the end to the log cabin? > > > Lots of love > > > Mel > > > xxxx

Response:

Medication….

admin — Sun, 07 Mar 2004 00:00:00 +0000

Question:

hi all, i have been dx with lupus last month. i am basically a ‘newbie’ and would like to hear all about the symptons, medication, dosages taken, experiences with docs.. i have been dx based on positive ANA, high Anti ds dna, low C3,C4 complement, swollen ’sausage’ like fingers. The doc prescribed prednisolone (30mg) once in the morning for a week and seriously, the first day I took pred., my fingers stopped swelling, body stop aching by lunch time. It was so quick!! But as I continued taking pred. I noticed I become very stressed, easily agitated, headache, heartburn, can feel my pulse racing at times. Four days ago, he reduced my pred. dosage to 15mg. First day, my legs feels a little swollen, like water-retention but does not hurt. One thing I notice though is I am no longer having headache. i am currently under the care of the nephorology clinic, which is by accident really. I wanted to see a rheumatologist but he was fully booked, so they referred me to a consultant physician, which happens to be in nephorology clinic. bin

Response:

Hi Bin, I am sorry about your diagnosis. It is a lot to take in at first. I would like to welcome you. I do hope we can help. You may have noticed that it is quiet around here on weekends. Others will reply soon. Forgive me if I don’t answer all of your questions at once. The prednisone question is a good place to start. I have trouble with my wrists, hands and fingers too. I had to go back on pred two or three time this year for that reason. One episode caused so much swelling in my finger that circulation to the end of it was getting cut off. I usually start at 20mgs for this problem. I stay on that for a week, then reduce to 15 for a week, then to 10, then 5, then off it. I wonder if the drop from 30mgs to 15mgs was too big for you. Predisone makes a lot of us feel like we could easily become axe murderers. It can make you crazy with mood swings, so you are not alone with the side effects you described. I was absolutely nuts at 60mgs. I am on Imuran now. It is not for everybody, but it has allowed me to get off the prednisone. I will write more to you another time. I am tired at the moment, so I must bow out for now. BJ-Sk. Canada "hooi bin" wrote in message

news:404b46eb$1_2@news.tm.net.my… – Hide quoted text — Show quoted text -> hi all, > i have been dx with lupus last month. i am basically a ‘newbie’ and would > like to hear all about the symptons, medication, dosages taken, experiences > with docs.. > i have been dx based on positive ANA, high Anti ds dna, low C3,C4 > complement, swollen ’sausage’ like fingers. The doc prescribed prednisolone > (30mg) once in the morning for a week and seriously, the first day I took > pred., my fingers stopped swelling, body stop aching by lunch time. It was > so quick!! But as I continued taking pred. I noticed I become very stressed, > easily agitated, headache, heartburn, can feel my pulse racing at times. > Four days ago, he reduced my pred. dosage to 15mg. First day, my legs feels > a little swollen, like water-retention but does not hurt. One thing I notice > though is I am no longer having headache. > i am currently under the care of the nephorology clinic, which is by > accident really. I wanted to see a rheumatologist but he was fully booked, > so they referred me to a consultant physician, which happens to be in > nephorology clinic. > bin

Response:

- Hide quoted text — Show quoted text -hooi bin wrote: > hi all, > i have been dx with lupus last month. i am basically a ‘newbie’ and would > like to hear all about the symptons, medication, dosages taken, experiences > with docs.. > i have been dx based on positive ANA, high Anti ds dna, low C3,C4 > complement, swollen ’sausage’ like fingers. The doc prescribed prednisolone > (30mg) once in the morning for a week and seriously, the first day I took > pred., my fingers stopped swelling, body stop aching by lunch time. It was > so quick!! But as I continued taking pred. I noticed I become very stressed, > easily agitated, headache, heartburn, can feel my pulse racing at times. > Four days ago, he reduced my pred. dosage to 15mg. First day, my legs feels > a little swollen, like water-retention but does not hurt. One thing I notice > though is I am no longer having headache. > i am currently under the care of the nephorology clinic, which is by > accident really. I wanted to see a rheumatologist but he was fully booked, > so they referred me to a consultant physician, which happens to be in > nephorology clinic. > bin

Hello bin, I’m glad you posted. Good to meet you. As BJ said things are quiet here. I’m having all kinds of computer problems, so haven’t been posting lately. I’m glad your headaches are gone. I can’t speak to Prednisone, never having taken it. My brother might have Lupus, he can’t get to a rheumatologist either. I find it interesting that you are from Malaysia? Would you be interested in putting yourself on Shelagh’s map? Its here http://members.shaw.ca/tiderington/index.htm Left side, there’s a globe. Some of our posters are on the map. You can point at the others’ messages and see what they wrote in theirs first to give you an idea, then locate approx where you live and "post" with the red thumb tack. I caution you not to put personal inforamation there, nor specifics here, but perhaps you know already (things like address, phone number etc, are discouraged on newsgroups). Post often, I look forward to getting to know you. J

Response:

Hi Bin! – Hide quoted text — Show quoted text -"hooi bin" wrote in message … > hi all, > i have been dx with lupus last month. i am basically a ‘newbie’ and would > like to hear all about the symptons, medication, dosages taken, experiences > with docs.. > i have been dx based on positive ANA, high Anti ds dna, low C3,C4 > complement, swollen ’sausage’ like fingers. The doc prescribed prednisolone > (30mg) once in the morning for a week and seriously, the first day I took > pred., my fingers stopped swelling, body stop aching by lunch time. It was > so quick!! But as I continued taking pred. I noticed I become very stressed, > easily agitated, headache, heartburn, can feel my pulse racing at times. > Four days ago, he reduced my pred. dosage to 15mg. First day, my legs feels > a little swollen, like water-retention but does not hurt. One thing I notice > though is I am no longer having headache. > i am currently under the care of the nephorology clinic, which is by > accident really. I wanted to see a rheumatologist but he was fully booked, > so they referred me to a consultant physician, which happens to be in > nephorology clinic. > bin

Response:

Thank you all for the warm welcome, it is nice to have somone who knows and understand this lupus condition.. I almost forgot a little introduction, my name is bin, 27, female from Kuala Lumpur, Malaysia. I work as an accounts & IT assistant. two very stressful job together, ain’t good for lupus but i need the $$$$ !! Thanks BJ, J and Wesley for taking time to reply. Again, thanks.

Response:

You certainly do have stressful days. I’m happy you found this news group (ng). 20 mgs of pred makes me the way you described. I just wanted to welcome you to the group, Bin. Others will give you more info on where to go for medication and other useful links. 7:02 A.M. in Livingston, Tx. Spring break for my two sons and hubby (the rat took off from work this week ) "I" gotta get ready for work. Again Welcome, Bin. Dawn "hooi bin" wrote in message

news:404c602a$1_2@news.tm.net.my… – Hide quoted text — Show quoted text -> Thank you all for the warm welcome, it is nice to have somone who knows and > understand this lupus condition.. > I almost forgot a little introduction, my name is bin, 27, female from Kuala > Lumpur, Malaysia. I work as an accounts & IT assistant. two very stressful > job together, ain’t good for lupus but i need the $$$$ !! > Thanks BJ, J and Wesley for taking time to reply. Again, thanks.

Response:

Hi Bin, You are not kidding when you say that your work is stressful. The things we have to do for money!! Thank you for more details about yourself. We already know you better. You asked about experiences with doctors. Most of us have had some bad doctors, but some good ones too. I had trouble in the past with doctors that would not help me with pain management. I seem to have that straightened out now. Do you have organ involvement? My problems are mostly blood/nervous system issues. Of course, there are the usual joint problems. I look forward to hearing more from you. BJ-Sk. Canada "hooi bin" wrote in message

Response:

Thanks Dawn for the kind reply. I feel ok now, but notice if I go out or walk too much (especially ’shopping’), I would be extremely tired the next day, the my leg, toes would start to swell and I will have headache and feel awful. I’ll be seeing the doc the next week for more tests, BUN, creatine, F.E.M.E … Luv, Bin

Response:

Hello BJ, Thanks for replying!! I am not sure if I have organ involvement, how do you tell? The doc is a little ‘quiet’ at times and do not tell me things, and I on the other hand do not know what to ask!! I had a positive ANA of 5.67, high Anti-DS DNA 73.5 IU/ML, low C3 70.6MG/DL, low C4 7.8MG/DL. I have searched through the internet and C3,C4 has something to do with kidney? The doc has not done a urine test yet, but would be doing F.E.M.E, BUN and creatine next week…. I hope it will turn up ok but then again, I really HATE BLOOD TESTS!!!!!!!!!!!!!!!!!!!!!!! The last one left me with bruise for almost a week! aaargh… Currently on medication and only occassional swollen toes, calves, knees … it does not hurt really, so I am not complaining. Again, thanks! Bin "BJ" wrote in message

news:104p5c2rnnajab4@corp.supernews.com… – Hide quoted text — Show quoted text -> Hi Bin, > You are not kidding when you say that your work is stressful. The things we > have to do for money!! Thank you for more details about yourself. We already > know you better. You asked about experiences with doctors. Most of us have > had some bad doctors, but some good ones too. I had trouble in the past with > doctors that would not help me with pain management. I seem to have that > straightened out now. Do you have organ involvement? My problems are mostly > blood/nervous system issues. Of course, there are the usual joint problems. > I look forward to hearing more from you. > BJ-Sk. Canada > "hooi bin" wrote in message > news:404c602a$1_2@news.tm.net.my… > > Thank you all for the warm welcome, it is nice to have somone who knows > and > > understand this lupus condition.. > > I almost forgot a little introduction, my name is bin, 27, female from > Kuala > > Lumpur, Malaysia. I work as an accounts & IT assistant. two very stressful > > job together, ain’t good for lupus but i need the $$$$ !! > > Thanks BJ, J and Wesley for taking time to reply. Again, thanks.

Response:

Hello J, Yup, I am from Malaysia and I have put myself on the map!! Cool websites!! Luv, Bin "J" wrote in message

news:404BA67F.E110CC26@execulink.com… – Hide quoted text — Show quoted text -> hooi bin wrote: > > hi all, > > i have been dx with lupus last month. i am basically a ‘newbie’ and would > > like to hear all about the symptons, medication, dosages taken, experiences > > with docs.. > > i have been dx based on positive ANA, high Anti ds dna, low C3,C4 > > complement, swollen ’sausage’ like fingers. The doc prescribed prednisolone > > (30mg) once in the morning for a week and seriously, the first day I took > > pred., my fingers stopped swelling, body stop aching by lunch time. It was > > so quick!! But as I continued taking pred. I noticed I become very stressed, > > easily agitated, headache, heartburn, can feel my pulse racing at times. > > Four days ago, he reduced my pred. dosage to 15mg. First day, my legs feels > > a little swollen, like water-retention but does not hurt. One thing I notice > > though is I am no longer having headache. > > i am currently under the care of the nephorology clinic, which is by > > accident really. I wanted to see a rheumatologist but he was fully booked, > > so they referred me to a consultant physician, which happens to be in > > nephorology clinic. > > bin > Hello bin, I’m glad you posted. Good to meet you. > As BJ said things are quiet here. I’m having all kinds of computer problems, so > haven’t been posting lately. > I’m glad your headaches are gone. I can’t speak to Prednisone, never having > taken it. > My brother might have Lupus, he can’t get to a rheumatologist either. > I find it interesting that you are from Malaysia? Would you be interested in > putting yourself on Shelagh’s map? > Its here http://members.shaw.ca/tiderington/index.htm > Left side, there’s a globe. Some of our posters are on the map. You can point at > the others’ messages and see what they wrote in theirs first to give you an > idea, then locate approx where you live and "post" with the red thumb tack. > I caution you not to put personal inforamation there, nor specifics here, but > perhaps you know already (things like address, phone number etc, are discouraged > on newsgroups). > Post often, I look forward to getting to know you. > J

Response:

hi everyone … update

admin — Tue, 13 Jan 2004 00:00:00 +0000

Question:

Hi All Update from down south here … school holidays for young B and J, and extremely hot weather (38 deg C, that’s over 100F!) Lots of reading to catch up here, hello to everyone, lots of new people! The work on the old bus we are kitting out as the motorhome is going gently bentley … got an endoscopy coming up (still messing around with ulcers and biliary colic) and celebrating the 5 year anniversary of our aspergers syndrome web site project by doing the first update in like umm … 2 years (well don’t think anyone really noticed). Few major dramas including the 4WD running into the neighbour’s house and demolishing part of it (yes … and no, I had nothing to do with it!) but coping ok with it. Our neighbours are the best! Ill be taking holidays soon from work, first time in about 3 years, think I’ve earned it now! That’s to coincide with the below 10mg drop prednisone I got coming … time to take to the daybed again! Take care all and happy new year cheer all round, ~Sal

Response:

Hi Sal, actually I do check in to your site once in a while and so will take a look at your updates… thanks for the notification! Hope you finish off that ‘bus’ soon so you can go travelling and enjoy some re and re! good luck with your endoscopy and your pred. reduction! Happy new year (albeit belated) to you too! Hugs from ~ Shelagh Footprints in the Sand oooO ( ) ( _) Oooo ( ) ) / (_/ ‘If He isn’t by your side, He is carrying you’ "Sal" wrote in message news:40043fcd@quokka.wn.com.au… : Hi All : : Update from down south here … school holidays for young B and J, and : extremely hot weather (38 deg C, that’s over 100F!) Lots of reading to catch : up here, hello to everyone, lots of new people! : : The work on the old bus we are kitting out as the motorhome is going gently : bentley … got an endoscopy coming up (still messing around with ulcers and : biliary colic) and celebrating the 5 year anniversary of our aspergers : syndrome web site project by doing the first update in like umm … 2 years : (well don’t think anyone really noticed). : : Few major dramas including the 4WD running into the neighbour’s house and : demolishing part of it (yes … and no, I had nothing to do with it!) but : coping ok with it. Our neighbours are the best! : : Ill be taking holidays soon from work, first time in about 3 years, think : I’ve earned it now! That’s to coincide with the below 10mg drop prednisone I : got coming … time to take to the daybed again! : : Take care all and happy new year cheer all round, : : ~Sal

Response:

Hi Sal! I didn’t know you had a website & I don’t see a link. You must’ve given it to the group before I came along?? How long have you been on pred? Just the way you talked, I figured it was for a long time. Maybe you’ve said before, but it didn’t click. I don’t know if you read Mair’s post awhile back, but she had a rough time getting to 10mg, so she did 10/12.5 every other day for 2 weeks, I think. It was an easier transition & something you may want to consider if it gets too bad. I wish you luck though. It’s alot easier going on them than off, I know. What about your driver’s license for the bus–did you get it yet? It’s hard to believe it’s 100

What is a tilt test?

admin — Sun, 23 Nov 2003 00:00:00 +0000

Question:

Would somebody who has been through one please tell me what a tilt test is, the purpose of a tilt test plus any other information regarding it. I have been unable to find info on exactly what is done except I have read it is quite unpleasant and, for some obscure reason, you have to have an IV. Exactly what is a tilt test supposed to prove that you have? Does it rule out certain conditions? Or is it some superfluous procedure that physicians do to cover themselves? Why does someone with a potential diagnosis of Lupus have to have a tilt test? As if you cannot tell, I am a bit suspicious of the tests that doctors order. I want to know what is going to happen, what the purpose of the test is, as well as how much pain and suffering it will be. TIA

Response:

Looks like a pretty thorough description at this URL: http://www.heartsite.com/html/tilt_test.html Such "layman’s" language that the word "lay" is used intransitively, as in "the patient lays on." Drives me crazy when people don’t use the right word: "lie," you idiot! The word is "lie"! Nonetheless, the site seems worth visiting. I’m sure there are other good descriptions. All I did to find this one was enter "tilt test" into the search blank on Google.com. This site was the second one listed. The first looked like an ad for tilt tables. I figured you didn’t want your own. ? $ ~^,hoever.com (malibu) wrote in message … – Hide quoted text — Show quoted text -> Would somebody who has been through one please tell me what a tilt > test is, the purpose of a tilt test plus any other information > regarding it. > I have been unable to find info on exactly what is done except I have > read it is quite unpleasant and, for some obscure reason, you have to > have an IV. > Exactly what is a tilt test supposed to prove that you have? Does it > rule out certain conditions? Or is it some superfluous procedure that > physicians do to cover themselves? Why does someone with a potential > diagnosis of Lupus have to have a tilt test? > As if you cannot tell, I am a bit suspicious of the tests that doctors > order. I want to know what is going to happen, what the purpose of the > test is, as well as how much pain and suffering it will be. > TIA

Response:

Lumbar Punctures

admin — Fri, 20 Jun 2003 00:00:00 +0000

Question:

"randiec" wrote in message

news:0m15fv4kmb4ej4861med8sa0hu2gand72v@4ax.com… > I know this is an old topic here, but I can’t remember what was said. > I am going for a lumbar puncture on Tuesday and I am quite nervous. > I remember reading here that I should drink Mountain Dew before and > after, but I don’t know how much I should be drinking. > If someone could post this again, or any other tips on how to get > through this I would appreciate it

whatever has caffeine in it. I didn’t drink ahead of time, because I was afraid it would make me sick. I did lie still for I think 2 hours after, so it’s best not to have a lot of liquid first. Being still like that on your stomach helps, and my radiologist brought me a big ol’ icy coke, and wouldn’t let me leave until I finished it. I spent the next day lying on the couch drinking coffee, eating coffee bean candy, and generally taking it easy. I did not have one bit of headache. To be honest, I was terrified of the procedure, but I’d rather have one than an MRI any day, now that I know how easy it is! The only sensation I felt was a little burning in my lower abdomen, probably as he pushed the anesthetic in? thing in (it was topically deadened first, of course) I listened to Dean Martin, the doctor chatted with me, and I thought it was a total breeze. The only real discomfort was a little initial stiffness from being in the same position for so long, I was scared to move! But the kinks went away quickly and I heartily recommend dosing with caffeine, whatever kind you like, I’d think. Good luck to you, don’t be nervous. Actually, I think i’d had an Ativan ahead of time, that helped. That, or a Valium. But I’m naturally pretty nervous anyway, making things worse than they really are. It’s not going to be as bad as you might think, I promise!

Response:

"randiec" wrote in message

news:bp47fv86dos0a5a7ql0hgp9lsga7lsdspc@4ax.com… > Hi Guys, > Thanks so much for the info and support. I am having a radiologist do > this. They are going to try and use soemthing so I don’t feel pain, > but some of the other drugs I take might make this an issue.

they made a point of showing me the needle, and it was like a hair. I think they said it’s like 1/10th the size of a blood-drawing needle? Also, no one seems to have mentioned this, but the drawing of the fluid itself with that tiny needle took about 10 minutes or less, and I think he took 5 tubes? It is a very brief test, the worst part is the waiting to get in. Afterward, I just lay there and conked out a bit, flat on my face. Tell the doc giving the test that you are afraid of a spinal headache, and they will take extra care. My test was specifically scheduled for a Thursday instead of a Friday, because they don’t do them on Fridays, in case the patient has any kind of problem, they won’t be stuck. If you do get "the" headache, it can be remedied. And if you feel it coming on at all, just lay back down and it subsides. Don’t schedule anything but rest. I rested a good three days after mine, really. > I will keep the mountain dew close by and hopefully I won’t have to > drink it. I am glad it was mentioned that I might want to rest that > afternoon because no one said I wouldn’t be fine that afternoon. I > had made other plans, and I may cancel them now.

both my doctors, radio and neuro, told me a MANDATORY 24 hour rest. > This is the definitive test for MS for me. I have spent the last year > with this diagnosis and now they think….maybe it is lupus…or maybe > it is MS……or maybe it is a mix of both….

mine had to be done, too. After 5 neg MRIs. The doctor had to talk me into the LP and I’m so glad he did > Wish me luck and a definitive diagnosis

wishing you luck and a diagnosis. the worst is the not knowing. thinking of you — nance

Response:

In this day of the MRI, why do they do an LP? I’ve never had one, thank heavens. Gaylan "white.lynx" wrote in message

news:Q0HIa.10241$JH5.1014289@news2.telusplanet.net… – Hide quoted text — Show quoted text -> Yes, they apply a local anesthetic so you do not feel the needle. Because > it is done behind you where you cannot see it, you really don’t have any > idea what is going on until it is over. > The theory that I believe, which makes sense to me, is that it is important > that they go through the muscle at an angle with the needle so when they > remove the needle, the muscle closes over the hole not allowing air into the > spinal cord area. I suspect that the headaches that many do experience (and > many do not) are the result of the loss of spinal fluid and the possibility > of air getting in the spinal cord area. When mine was done the fluid was > removed very slowly. The idea of a smaller needle reducing the speed of the > fluid withdrawal makes sense to me. > While I am not sure, I suspect it is not the caffeine in mountain dew, but > something else that helps replace the missing spinal cord fluid. So many > people on this newsgroup have reported success with this that it makes sense > and I don’t see any harm it could cause. > There appeared to be as many or more people (including myself) who have not > had bad experiences with spinal tap as there have been those who reported > significant headaches. Of course if you are one of those with a headache it > does not matter what everybody else experiences. > If I thought it would serve a useful purpose, I would not worry about having > it done again. In many cases it is a final determiner for diagnosis which > can be invaluable when doctors or neurologists completes paperwork for > disability claims or insurance of various types. In many cases it is not > necessary, but depending upon other diagnostic results it certainly can > eliminate any doubt about the diagnosis. If you are not concern with > documentation and neurologists say there’s enough to proof to make a > definitive diagnosis, then it certainly would appear to be optional. > Like everything else, everyone has to decide for themselves what is best. > Good lot and I hope it works out as well for you as it did for me. > Larry > rather than building character, adversity tends to reveal it > written with voice recognition software > wrote in message

news:bcvbps$jtu$1@ins22.netins.net… – Hide quoted text — Show quoted text -> > Don’t they usually use Novocain to deaden the area? > > Kathy K.

Response:

Gaylan wrote: > In this day of the MRI, why do they do an LP? > I’ve never had one, thank heavens.

Good point. Often they don’t have to but do. The new MacDonald Criteria for diagnosing MS allow MS to be diagnosed in many cases without an MRI: http://www.mult-sclerosis.org/DiagnosticCriteria.html It’s all Poser’s fault for relying so heavily on LPs. A lot of neuros aren’t up-to-date and still use the Poser Criteria: http://www.mult-sclerosis.org/Posercriteria.html Almost all inflammatory conditions of the central nervous system give a positive LP. Take care, Paul All About MS – the latest MS News and Views http://www.mult-sclerosis.org/

Response:

Paul Jones wrote:

Whoops, I meant to say: Often they don’t have to but do. The new MacDonald Criteria for diagnosing MS allow MS to be diagnosed in many cases without an LP: ^^ Take care, Paul All About MS – the latest MS News and Views http://www.mult-sclerosis.org/

Response:

- Hide quoted text — Show quoted text ->I know this is an old topic here, but I can’t remember what was said. >I am going for a lumbar puncture on Tuesday and I am quite nervous. >I remember reading here that I should drink Mountain Dew before and >after, but I don’t know how much I should be drinking. >If someone could post this again, or any other tips on how to get >through this I would appreciate it >Thanks >Randie

Mountain Dew’s caffeine content is not really any higher than any other soft drink. Popular legend says other wise, but there is only a 2mg. differnce per 10 oz. serving.

Response:

- Hide quoted text — Show quoted text -zenopho…@aol.com (Zenophobix) wrote in message … > >I know this is an old topic here, but I can’t remember what was said. > >I am going for a lumbar puncture on Tuesday and I am quite nervous. > >I remember reading here that I should drink Mountain Dew before and > >after, but I don’t know how much I should be drinking. > >If someone could post this again, or any other tips on how to get > >through this I would appreciate it > >Thanks > >Randie > Mountain Dew’s caffeine content is not really any higher than any other soft > drink. Popular legend says other wise, but there is only a 2mg. differnce per > 10 oz. serving.

hi zeno it’s also thewater, suger and acids (aka; electrolytes) that help as precursors to spinal fluid. beyond that, i’ve personal experience of it’s effectivness as well as many thanks from folks who’ve used ot effectivly over the years. it’s quite likely that there are equally effective alternatives. but given the nature of the tap headache i can’t imagine suggesting an untried alternative no matter what the theoretical basis. in my experiance the pain involved and the remarkable effectvness of the dew in elimimating same means it’s a no brainer. yours empirically ed

Response:

the idea is to drink lots for caffine. It’s supposed to help your body replentish the spinal fluid faster. — Cyberhugs, DianeW It is only with the heart that one can see rightly; what is essential is invisible to the eye. –Antoine de Saint Exup

uk benefits???

admin — Sun, 15 Jun 2003 00:00:00 +0000

Question:

hi, my gran has just been diagnosed as having Lupus and as a famioly we are wondering what benefits she is now entitled to….any help much appreciated …thanks

Response:

In article <8d266a84.0306151615.74c43…@posting.google.com>, slj wrote >hi, my gran has just been diagnosed as having Lupus and as a famioly >we are wondering what benefits she is now entitled to….any help much >appreciated …thanks

None solely because she has been diagnosed with lupus. However a formal medical diagnosis may qualify her for disability benefits etc. There is (or was) a page on http://www.uklupus.co.uk which went into this in some detail. Lupus does NOT qualify you for free prescriptions. — Andy [Chair, N E Lupus Group] See http://www.kitzbuhel.demon.co.uk/lupus for more!

Response:

Pain Mgmt

admin — Thu, 12 Jun 2003 00:00:00 +0000

Question:

- Hide quoted text — Show quoted text -Wesley wrote: > I went to the pain clinic today. The doctors were very nice. After > listening carefully (a rare trait in medicine these days), they formed > a plan. They prescribed duragesic patches, 25 micrograms per hour, > lidocane patches, clonidine twice a day to cut down the traffic of > pain signals, and they spread the neurontin out to four 600 mg doses. > They said that 600 mg is all the body can absorb at one time. The > clonidine and lidocane patches must be approved by the transplant > people before being prescribed. I am wearing the first duragesic > patch right now, waiting unpatiently for it to kick in. > The place was set up like an emergency room, with ten rooms in a > circle surrounding a nurse’s station. Each room had a hospital bed in > place of an exam table. They do a lot of nerve blocks and epidurals. > When the nurse saw me, she said that I was an 8, referring to the 0-10 > pain scale. She said that my face looked like the one above 8 on the > scale, just to the left of the one that was crying. I guess you get > to be a fair judge of pain when you see a lot of it.

Hi Wes, Glad you’ve got a plan going now for the pain and hopefully the duragesic has already kicked in. The mammogram technician "dx’d me" When I asked how did she know, she said she could tell by my posture. Glad you found expert care. Hugs J

Response:

Hi Mary, Ten percocets, how stingy is that? Your PCP must be one of those docs who worries too much about addiction. Anyway, the pain guy said that opioids and neurontin are an excellent combination for headache, neuralgia, and neuropathy. I wish you had gotten that appointment to a pain specialist. What a difference it has made for me already. I am pain free right now. There is breakthrough pain when the neurontin wears off, but it doesn’t last long. – Hide quoted text — Show quoted text -"Mair" wrote in message … > Wes, > way to go with the pain meds, congratulations on getting them. I had a > catastrophically bad week… but am having trouble hooking up with the > newsgroop. How quickly did you drop the pred? You do know that the joint > pain rebounds, almost regardless as to how small the dosage drop. I would > try 1mg or 0.5 mg at a time to go completely off it. Try the decrease for a > week, and don’t expect another until your world is great again. Before you > know it, you will be off, or at least down to 3 or 4 mg. > On account of my insanity-producing migraine, I did get a tiny prescription > of Percocet (10 tabs, hey don’t take them all at once, huh?). And I have > told her (my PCP doc) that I need to go to a physical therapy or a pain > clinic… that, no, the percocet is not the answer. It is helping > tremendously though…. not for the migraine, but for the rest of my body, > which makes it way easier for me to deal with the headache pain. > Yes pain has measurable symptoms! Both my pulse and my BP were racing, as > well as that drawn look on the face and pale or greenish skin. I am glad > that you were not the "crying" picture. How sad is that. I never cry at a > 9 or 10… I become like a cigarstore indian… without his cigar, > nonetheless. Unresponsive is what I am getting at. > So me, I’m flushing my sinuses with salt water, and spacing my percocets as > far apart as I can. The percs make my hands strong enough so that I can > massage my own shoulders neck and back, and face… which helps the headache > quite a bit. > Only absorb 600 Neuro at a time, eh? hmmm. I take 800s and I can’t say > that I observe much help from them… not even drowsiness. > Well, I hope you are not a number 8 any more. > We wish you the very best > Mary and Pigmet > "Wesley" wrote in message > news:112adbed.0306121351.4030bbb3@posting.google.com… > > Hello, > > I went to the pain clinic today. The doctors were very nice. After > > listening carefully (a rare trait in medicine these days), they formed > > a plan. They prescribed duragesic patches, 25 micrograms per hour, > > lidocane patches, clonidine twice a day to cut down the traffic of > > pain signals, and they spread the neurontin out to four 600 mg doses. > > They said that 600 mg is all the body can absorb at one time. The > > clonidine and lidocane patches must be approved by the transplant > > people before being prescribed. I am wearing the first duragesic > > patch right now, waiting unpatiently for it to kick in. > > The place was set up like an emergency room, with ten rooms in a > > circle surrounding a nurse’s station. Each room had a hospital bed in > > place of an exam table. They do a lot of nerve blocks and epidurals. > > When the nurse saw me, she said that I was an 8, referring to the 0-10 > > pain scale. She said that my face looked like the one above 8 on the > > scale, just to the left of the one that was crying. I guess you get > > to be a fair judge of pain when you see a lot of it.

Response:

I’m glad to hear you are doing so well Wes. I too hope the patches and drugs kick in and give you the relief you’re needing. I haven’t touched base with the group in too long. Between transferring computer systems at work, busy with kids, life in general and "managing" (yeah right) the Lupus, the last thing i want to do is get on this ol’ computer of mine. Dawn "J" wrote in message

news:3EE9B26E.665C3B65@execulink.com… – Hide quoted text — Show quoted text -> Wesley wrote: > > I went to the pain clinic today. The doctors were very nice. After > > listening carefully (a rare trait in medicine these days), they formed > > a plan. They prescribed duragesic patches, 25 micrograms per hour, > > lidocane patches, clonidine twice a day to cut down the traffic of > > pain signals, and they spread the neurontin out to four 600 mg doses. > > They said that 600 mg is all the body can absorb at one time. The > > clonidine and lidocane patches must be approved by the transplant > > people before being prescribed. I am wearing the first duragesic > > patch right now, waiting unpatiently for it to kick in. > > The place was set up like an emergency room, with ten rooms in a > > circle surrounding a nurse’s station. Each room had a hospital bed in > > place of an exam table. They do a lot of nerve blocks and epidurals. > > When the nurse saw me, she said that I was an 8, referring to the 0-10 > > pain scale. She said that my face looked like the one above 8 on the > > scale, just to the left of the one that was crying. I guess you get > > to be a fair judge of pain when you see a lot of it. > Hi Wes, > Glad you’ve got a plan going now for the pain and hopefully the duragesic > has already kicked in. > The mammogram technician "dx’d me" When I asked how did she know, she > said she could tell by my posture. > Glad you found expert care. > Hugs > J

Response:

Hi Wes, That is wonderful news. It is so nice to hear you say that you are pain free. BJ-Sk. Canada "Wesley" wrote in message

news:112adbed.0306130621.601c844e@posting.google.com… > Hi Mary, > Ten percocets, how stingy is that? Your PCP must be one of those docs > who worries too much about addiction. Anyway, the pain guy said that > opioids and neurontin are an excellent combination for headache, > neuralgia, and neuropathy. I wish you had gotten that appointment to > a pain specialist. What a difference it has made for me already. I > am pain free right now. There is breakthrough pain when the neurontin > wears off, but it doesn’t last long. > "Mair" wrote in message

… – Hide quoted text — Show quoted text -> > Wes, > > way to go with the pain meds, congratulations on getting them. I had a > > catastrophically bad week… but am having trouble hooking up with the > > newsgroop. How quickly did you drop the pred? You do know that the joint > > pain rebounds, almost regardless as to how small the dosage drop. I would > > try 1mg or 0.5 mg at a time to go completely off it. Try the decrease for a > > week, and don’t expect another until your world is great again. Before you > > know it, you will be off, or at least down to 3 or 4 mg. > > On account of my insanity-producing migraine, I did get a tiny prescription > > of Percocet (10 tabs, hey don’t take them all at once, huh?). And I have > > told her (my PCP doc) that I need to go to a physical therapy or a pain > > clinic… that, no, the percocet is not the answer. It is helping > > tremendously though…. not for the migraine, but for the rest of my body, > > which makes it way easier for me to deal with the headache pain. > > Yes pain has measurable symptoms! Both my pulse and my BP were racing, as > > well as that drawn look on the face and pale or greenish skin. I am glad > > that you were not the "crying" picture. How sad is that. I never cry at a > > 9 or 10… I become like a cigarstore indian… without his cigar, > > nonetheless. Unresponsive is what I am getting at. > > So me, I’m flushing my sinuses with salt water, and spacing my percocets as > > far apart as I can. The percs make my hands strong enough so that I can > > massage my own shoulders neck and back, and face… which helps the headache > > quite a bit. > > Only absorb 600 Neuro at a time, eh? hmmm. I take 800s and I can’t say > > that I observe much help from them… not even drowsiness. > > Well, I hope you are not a number 8 any more. > > We wish you the very best > > Mary and Pigmet > > "Wesley" wrote in message > > news:112adbed.0306121351.4030bbb3@posting.google.com… > > > Hello, > > > I went to the pain clinic today. The doctors were very nice. After > > > listening carefully (a rare trait in medicine these days), they formed > > > a plan. They prescribed duragesic patches, 25 micrograms per hour, > > > lidocane patches, clonidine twice a day to cut down the traffic of > > > pain signals, and they spread the neurontin out to four 600 mg doses. > > > They said that 600 mg is all the body can absorb at one time. The > > > clonidine and lidocane patches must be approved by the transplant > > > people before being prescribed. I am wearing the first duragesic > > > patch right now, waiting unpatiently for it to kick in. > > > The place was set up like an emergency room, with ten rooms in a > > > circle surrounding a nurse’s station. Each room had a hospital bed in > > > place of an exam table. They do a lot of nerve blocks and epidurals. > > > When the nurse saw me, she said that I was an 8, referring to the 0-10 > > > pain scale. She said that my face looked like the one above 8 on the > > > scale, just to the left of the one that was crying. I guess you get > > > to be a fair judge of pain when you see a lot of it.

Response:

Ditto re the catheter into the spine with meds! yech! I misunderstood about your patch I think and that is a good thing! So you are getting alot more relief then than you would have with the percs with tylenol ( along with saving your liver )… that is really great! and sounds like a bunch of terrific docs at your pn.mngt. clinic! …. Your arriving at an *8 and leaving with *relief…. can’t beat that for sure! Good luck with the continuing pain relief and I hope it never returns to you! hugs……from Shelagh "Wesley" wrote in message

news:112adbed.0306130644.541651b5@posting.google.com… – Hide quoted text — Show quoted text -> Hi Shelagh, > I really think that the doctor thought he was doing me a favor with > the patch. He said that it was the same as 12 to 16 percocets, > without all that tylenol. I take so many meds that he was worried > about my liver. The patch and the neurontin are a one-two punch for > neuropathy. He said that I could take as many 600 mg doses of > neurontin as I was willing to swallow, but he hoped that four would be > enough. Then there is the clonidine and the lidocane. My transplant > coordinator said that getting the surgeon to okay them should be no > problem. If all that does not work, the next step is a catheter in my > lower back, and a pump that will deliver medication directly into my > spine. I hope it does not get that far.

Response:

Hi Shelagh, I really think that the doctor thought he was doing me a favor with the patch. He said that it was the same as 12 to 16 percocets, without all that tylenol. I take so many meds that he was worried about my liver. The patch and the neurontin are a one-two punch for neuropathy. He said that I could take as many 600 mg doses of neurontin as I was willing to swallow, but he hoped that four would be enough. Then there is the clonidine and the lidocane. My transplant coordinator said that getting the surgeon to okay them should be no problem. If all that does not work, the next step is a catheter in my lower back, and a pump that will deliver medication directly into my spine. I hope it does not get that far. – Hide quoted text — Show quoted text -"Shelagh" wrote in message … > Good going Wes! > Some success is there even though small ;( > Praying that your duragesic patch kicks in very quickly and that the > other meds are approved for you and that the whole shebang works like a > hot damn for you!! > Don’t know why they just won’t give you what works though…. the > percocet I mean… why on earth are some doctors so tight fisted with > analgesia?! If it was them or their family members you can bet they > would be demanding relief!! > Good luck to you…. wishing you only pain free days! and many of them! > — > hugs……from Shelagh > "Wesley" wrote in message > news:112adbed.0306121351.4030bbb3@posting.google.com… > > Hello, > > I went to the pain clinic today. The doctors were very nice. After > > listening carefully (a rare trait in medicine these days), they formed > > a plan. They prescribed duragesic patches, 25 micrograms per hour, > > lidocane patches, clonidine twice a day to cut down the traffic of > > pain signals, and they spread the neurontin out to four 600 mg doses. > > They said that 600 mg is all the body can absorb at one time. The > > clonidine and lidocane patches must be approved by the transplant > > people before being prescribed. I am wearing the first duragesic > > patch right now, waiting unpatiently for it to kick in. > > The place was set up like an emergency room, with ten rooms in a > > circle surrounding a nurse’s station. Each room had a hospital bed in > > place of an exam table. They do a lot of nerve blocks and epidurals. > > When the nurse saw me, she said that I was an 8, referring to the 0-10 > > pain scale. She said that my face looked like the one above 8 on the > > scale, just to the left of the one that was crying. I guess you get > > to be a fair judge of pain when you see a lot of it.

Response:

Hi Andy, I’ve had that doctor too! He sure gets around. When I handed him a copy of my research, on which I spent hours, he laughed out loud. I knew then that I was in big trouble. Perhaps his type should just yell out his diagnosis through his office door. No sense opening it after all! All the best to your wife, and you also. You must be a wonderful husband. – Hide quoted text — Show quoted text -Andy wrote in message … > In article <112adbed.0306121351.4030b…@posting.google.com>, Wesley > wrote > >Hello, > >I went to the pain clinic today. The doctors were very nice. After > >listening carefully (a rare trait in medicine these days), > Ha! Apparently one of the UK medical journals has an article in the > latest issue saying that knowledgeable patients who do their research > before an appointment take up too much of the doctor’s time. I read this > out to my wife (*), who said it must have been written by a doctor like > one she once had. The local story on him was that if he was any quicker, > he’d be writing Good Morning on the prescription pad and handing it to > you as you entered his consulting room. > {for some value of ‘consult’ asymptotically close to zero} > (*) for new readers: she has the Lupus (and more); I’m just married to > it.

Response:

In article <112adbed.0306121351.4030b…@posting.google.com>, Wesley wrote >Hello, >I went to the pain clinic today. The doctors were very nice. After >listening carefully (a rare trait in medicine these days),

Ha! Apparently one of the UK medical journals has an article in the latest issue saying that knowledgeable patients who do their research before an appointment take up too much of the doctor’s time. I read this out to my wife (*), who said it must have been written by a doctor like one she once had. The local story on him was that if he was any quicker, he’d be writing Good Morning on the prescription pad and handing it to you as you entered his consulting room. {for some value of ‘consult’ asymptotically close to zero} (*) for new readers: she has the Lupus (and more); I’m just married to it. — Andy [Chair, N E Lupus Group] See http://www.kitzbuhel.demon.co.uk/lupus for more!

Response:

Hello, I went to the pain clinic today. The doctors were very nice. After listening carefully (a rare trait in medicine these days), they formed a plan. They prescribed duragesic patches, 25 micrograms per hour, lidocane patches, clonidine twice a day to cut down the traffic of pain signals, and they spread the neurontin out to four 600 mg doses. They said that 600 mg is all the body can absorb at one time. The clonidine and lidocane patches must be approved by the transplant people before being prescribed. I am wearing the first duragesic patch right now, waiting unpatiently for it to kick in. The place was set up like an emergency room, with ten rooms in a circle surrounding a nurse’s station. Each room had a hospital bed in place of an exam table. They do a lot of nerve blocks and epidurals. When the nurse saw me, she said that I was an 8, referring to the 0-10 pain scale. She said that my face looked like the one above 8 on the scale, just to the left of the one that was crying. I guess you get to be a fair judge of pain when you see a lot of it.

Response:

Wes, way to go with the pain meds, congratulations on getting them. I had a catastrophically bad week… but am having trouble hooking up with the newsgroop. How quickly did you drop the pred? You do know that the joint pain rebounds, almost regardless as to how small the dosage drop. I would try 1mg or 0.5 mg at a time to go completely off it. Try the decrease for a week, and don’t expect another until your world is great again. Before you know it, you will be off, or at least down to 3 or 4 mg. On account of my insanity-producing migraine, I did get a tiny prescription of Percocet (10 tabs, hey don’t take them all at once, huh?). And I have told her (my PCP doc) that I need to go to a physical therapy or a pain clinic… that, no, the percocet is not the answer. It is helping tremendously though…. not for the migraine, but for the rest of my body, which makes it way easier for me to deal with the headache pain. Yes pain has measurable symptoms! Both my pulse and my BP were racing, as well as that drawn look on the face and pale or greenish skin. I am glad that you were not the "crying" picture. How sad is that. I never cry at a 9 or 10… I become like a cigarstore indian… without his cigar, nonetheless. Unresponsive is what I am getting at. So me, I’m flushing my sinuses with salt water, and spacing my percocets as far apart as I can. The percs make my hands strong enough so that I can massage my own shoulders neck and back, and face… which helps the headache quite a bit. Only absorb 600 Neuro at a time, eh? hmmm. I take 800s and I can’t say that I observe much help from them… not even drowsiness. Well, I hope you are not a number 8 any more. We wish you the very best Mary and Pigmet "Wesley" wrote in message

news:112adbed.0306121351.4030bbb3@posting.google.com… – Hide quoted text — Show quoted text -> Hello, > I went to the pain clinic today. The doctors were very nice. After > listening carefully (a rare trait in medicine these days), they formed > a plan. They prescribed duragesic patches, 25 micrograms per hour, > lidocane patches, clonidine twice a day to cut down the traffic of > pain signals, and they spread the neurontin out to four 600 mg doses. > They said that 600 mg is all the body can absorb at one time. The > clonidine and lidocane patches must be approved by the transplant > people before being prescribed. I am wearing the first duragesic > patch right now, waiting unpatiently for it to kick in. > The place was set up like an emergency room, with ten rooms in a > circle surrounding a nurse’s station. Each room had a hospital bed in > place of an exam table. They do a lot of nerve blocks and epidurals. > When the nurse saw me, she said that I was an 8, referring to the 0-10 > pain scale. She said that my face looked like the one above 8 on the > scale, just to the left of the one that was crying. I guess you get > to be a fair judge of pain when you see a lot of it.

Response:

Good going Wes! Some success is there even though small ;( Praying that your duragesic patch kicks in very quickly and that the other meds are approved for you and that the whole shebang works like a hot damn for you!! Don’t know why they just won’t give you what works though…. the percocet I mean… why on earth are some doctors so tight fisted with analgesia?! If it was them or their family members you can bet they would be demanding relief!! Good luck to you…. wishing you only pain free days! and many of them! — hugs……from Shelagh "Wesley" wrote in message

Response:

Thanks for the Welcome back

admin — Wed, 05 Mar 2003 00:00:00 +0000

Question:

I feel good all over after those warm and fuzzies that were sent my way. Truly! Thank You. Why don’t I post more? Because a lot of the time, mentally constructing a response is exhausting if not near to impossible. Mostly, I wait and see if someone else has posted whatever info I might have to share and usually someone has. Judith knows, the same is true with conversation – if I’m tired or stressed – forget it! It seems as tho’ after about a half an hour, the synaspses just give up the ghost. Recently I took a friend out to lunch to cheer here up (Yeah, right ). Halfway thru the soup, my brain quit – I just couldn’t keep up, couldn’t process input, etc. Sweet person that she is, she just carried on but was reduced to "Read any good books lately?" (with worried look on her face). Me, the constant reader, could not think of a single book to respond about. Funny thing is I seeem to have complete memory of what she said, what I was thinking, etc. Anyone else relate to this?? Considering that my professional forte was writing, proofing, editing, this is one h*ll of a comedown! Today I’m coherent (I think – LOL); tomorrow – who knows? When you don’t hear from me, know that the fog is just too thick to poke my way through. I’m most likely fine otherwise – you know, normal for a mild lupie . By the way, this is why I have so much trouble communicating with doctors – even so, they just think I’m nuts – "Lupus doesn’t affect the brain." (Any comment regarding this might cause the post to be rejected!) It’s wonderful to have a place where I feel at home even when I just lurk. Even if you don’t hear from me, know that I follow all the posts and have sent many a prayer. Let’s hear it for ASL!! Jackie

Response:

Hi Jackie, I saw your post, and just had to answer before I go on to other things. I do understand why you don’t post more often. My brain works, or doesn’t work, in much the same way as you describe. It makes it difficult to talk to doctors. Often I can’t even tell them what is wrong when they ask me. I am better now, but am terrible when I am in a flare. I can’t form simple sentences then. There is no way I could even remember how to turn the computer on, let along type anything. It is tough, and frustrating. I always keep in mind that there is no one here who would be critical of my wording. They would only be warm and fuzzy. So post if you feel you can, even if it is only to say hello. We all care. BJ-Sk, Canada "Jackie K." wrote in message

news:Y5p9a.3664$wJ1.383508@newsread2.prod.itd.earthlink.net… – Hide quoted text — Show quoted text -> I feel good all over after those warm and fuzzies that were sent my way. > Truly! Thank You. > Why don’t I post more? Because a lot of the time, mentally > constructing a response is exhausting if not near to impossible. > Mostly, I wait and see if someone else has posted whatever info > I might have to share and usually someone has. Judith knows, > the same is true with conversation – if I’m tired or stressed – forget it! > It seems as tho’ after about a half an hour, the synaspses just give > up the ghost. > Recently I took a friend out to lunch to cheer here up (Yeah, right > ). Halfway thru the soup, my brain quit – I just couldn’t keep > up, couldn’t process input, etc. Sweet person that she is, she just > carried on but was reduced to "Read any good books lately?" > (with worried look on her face). Me, the constant reader, could not think > of a single book to respond about. Funny thing is I seeem to have complete > memory of what she said, what I was thinking, etc. > Anyone else relate to this?? > Considering that my professional forte was writing, proofing, editing, > this is one h*ll of a comedown! Today I’m coherent (I think – LOL); > tomorrow – who knows? > When you don’t hear from me, know that the fog is just too > thick to poke my way through. I’m most likely fine otherwise – > you know, normal for a mild lupie . By the way, this is > why I have so much trouble communicating with doctors – > even so, they just think I’m nuts – "Lupus doesn’t affect the > brain." (Any comment regarding this might cause the post to be rejected!) > It’s wonderful to have a place where I feel at home even when > I just lurk. Even if you don’t hear from me, know that I > follow all the posts and have sent many a prayer. > Let’s hear it for ASL!! > Jackie

Response:

In article , Jackie K. wrote [] > By the way, this is >why I have so much trouble communicating with doctors – >even so, they just think I’m nuts – "Lupus doesn’t affect the >brain."

Point them at http://www.kitzbuhel.demon.co.uk/lupus/faqshets/faqs05.htm [in case anyone wonders - the reason it's 'faqshets' not 'faqsheets' is that my web system hates folder names longer than 8 characters ] — Andy [Chair, N E Lupus Group] See http://www.kitzbuhel.demon.co.uk/lupus for more!

Response:

Hi Jackie I understand what you mean bout the fog and I am just wondering , have any of those Drs. heard of central nervous system involvement with Lupus ?? Is what I have had for a while now I would think that falls under effecting the brain. You just type when you want to we are all glad to hear from you. Cindy W. – Hide quoted text — Show quoted text -"Jackie K." wrote: > I feel good all over after those warm and fuzzies that were sent my way. > Truly! Thank You. > Why don’t I post more? Because a lot of the time, mentally > constructing a response is exhausting if not near to impossible. > Mostly, I wait and see if someone else has posted whatever info > I might have to share and usually someone has. Judith knows, > the same is true with conversation – if I’m tired or stressed – forget it! > It seems as tho’ after about a half an hour, the synaspses just give > up the ghost. > Recently I took a friend out to lunch to cheer here up (Yeah, right > ). Halfway thru the soup, my brain quit – I just couldn’t keep > up, couldn’t process input, etc. Sweet person that she is, she just > carried on but was reduced to "Read any good books lately?" > (with worried look on her face). Me, the constant reader, could not think > of a single book to respond about. Funny thing is I seeem to have complete > memory of what she said, what I was thinking, etc. > Anyone else relate to this?? > Considering that my professional forte was writing, proofing, editing, > this is one h*ll of a comedown! Today I’m coherent (I think – LOL); > tomorrow – who knows? > When you don’t hear from me, know that the fog is just too > thick to poke my way through. I’m most likely fine otherwise – > you know, normal for a mild lupie . By the way, this is > why I have so much trouble communicating with doctors – > even so, they just think I’m nuts – "Lupus doesn’t affect the > brain." (Any comment regarding this might cause the post to be rejected!) > It’s wonderful to have a place where I feel at home even when > I just lurk. Even if you don’t hear from me, know that I > follow all the posts and have sent many a prayer. > Let’s hear it for ASL!! > Jackie

Response:

"Andy" wrote in message

news:rzwqIuTrIiZ+EwvZ@kitzbuhel.demon.co.uk… > In article , > Jackie K. wrote > [] > > By the way, this is > >why I have so much trouble communicating with doctors – > >even so, they just think I’m nuts – "Lupus doesn’t affect the > >brain." > Point them at http://www.kitzbuhel.demon.co.uk/lupus/faqshets/faqs05.htm > [in case anyone wonders - the reason it's 'faqshets' not 'faqsheets' is > that my web system hates folder names longer than 8 characters ] > — > Andy [Chair, N E Lupus Group] > See http://www.kitzbuhel.demon.co.uk/lupus for more!

I would but "You can’t trust what you read on the internet, you know." I might benefit from the fact that my doc left town – no other docs to take his patients. There’s a rural health clinic with PAs. They KNOW they don’t know it all!

Response:

"Ward" wrote in message

news:3E66ADA9.C0459876@earthlink.net… > Hi Jackie I understand what you mean bout the fog and I am just wondering , > have any of those Drs. heard of central nervous system involvement with Lupus > ?? Is what I have had for a while now I would think that falls under > effecting the brain.

Hi Cindy, I’m sure they have but for the most part, I think I’m just not sick enough (lucky, I know!) to be taken seriously. It’s just easier to assume that I’m an inarticulate old lady. It’s the same that they just ignore me when I tell them that I have to be careful when walking because when I get tired (doesn’t take much ) I trip because my right foot tends not to pick itself up properly. This is a small thing that I can watch out for – there’s probably nothing that they can do. It’s nothing new. What counts is that DH understands and could not be more helpful and patient – we are able to joke about it. ((((((cindy))))))))) Jackie

Response:

In article , Jackie K. wrote >"Andy" wrote in message >news:rzwqIuTrIiZ+EwvZ@kitzbuhel.demon.co.uk… [ >> Point them at http://www.kitzbuhel.demon.co.uk/lupus/faqshets/faqs05.htm [ >I would but "You can't trust what you read on the internet, you know." I >might benefit from the fact that my doc left town - no other >docs to take his patients. There's a rural health clinic with PAs. >They KNOW they don't know it all!

Good point - but neither can they say "if it's on the internet it is automatically false"! Point them also at who wrote it: "LUPUS UK acknowledges with gratitude the assistance of Dr Graham Hughes (St Thomas' Hospital, London) and Dr Caroline Gordon and colleagues (Queen Elizabeth Hospital, Birmingham) in the provision of clinical information towards the production of these fact sheets" (Ie, the top UK consultants wrote the words, the LupusUK office did the layout and production, and I scanned & proofread the printed sheets on to my site) -- Andy [Chair, N E Lupus Group] See http://www.kitzbuhel.demon.co.uk/lupus for more!

Response:

In article , Jackie K. wrote [ >It's the same that >they just ignore me when I tell them that I have to be careful when >walking because when I get tired (doesn't take much ) I trip >because my right foot tends not to pick itself up properly.

Small world - my wife (it's her who has the lupus) has the same problem - and the same lack of answer! -- Andy [Chair, N E Lupus Group] See http://www.kitzbuhel.demon.co.uk/lupus for more!

Response:

On Wed, 05 Mar 2003 15:55:36 GMT, "Jackie K." wrote: >you know, normal for a mild lupie . By the way, this is >why I have so much trouble communicating with doctors – >even so, they just think I’m nuts – "Lupus doesn’t affect the >brain." (Any comment regarding this might cause the post to be rejected!)

I don’t understand how any doctor can say that to be honest. Lupus CNS is a well-known condition and in fact, "cognitive dysfunction" is one of the 11 major criteria used by the ACR to diagnose Lupus (#8 – Neurological Disorder). I’d recommend copying pages from Dr. Wallace’s book as well as the UK lupus faqsheets (which were not written by us lowly no-nothings but by a medical doctor), Pages 100-115 of the Lupus Book by Dr. Daniel Wallace, MD are about the effects on the nervous system due to lupus. largely about the CNS but also about the peripheral nervous system. If you can’t get a copy of this from your local library, let me know and I’ll be glad to copy those pages and send them to you so you can send them to your doctors. >It’s wonderful to have a place where I feel at home even when >I just lurk. Even if you don’t hear from me, know that I >follow all the posts and have sent many a prayer.

well, I’m glad you’re out there and glad you delurked for a bit. Take care and know that you are in my thoughts and prayers. kcat 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:

"Andy" wrote in message

news:gXNoR5DcGyZ+EwtZ@kitzbuhel.demon.co.uk… > In article , > Jackie K. wrote > [ > >It's the same that > >they just ignore me when I tell them that I have to be careful when > >walking because when I get tired (doesn't take much ) I trip > >because my right foot tends not to pick itself up properly. > Small world - my wife (it's her who has the lupus) has the same problem > - and the same lack of answer! > -- > Andy [Chair, N E Lupus Group] > See http://www.kitzbuhel.demon.co.uk/lupus for more!

I have no doubt that you are as helpful and understanding as my DH. She and I are lucky. Jackie (chair warmer in mountain hideaway )

Response:

I couldn’t agree more. In fact, it was ASL and this info which convinced DH and me to make loooong journey to find a rheumy which resulted in diagnosis after many years of run around and I sincerely thank you. But consider this. I tried to get my local doc to just look at The Lupus Book, to see Dr. Wallace’s credentials. Offered to lend it to him so he could give me his opinion. He would not look at it. That was prediagnosis, but still….. I don’t get into town enough to know if he left voluntarily or was run out on a rail! Either way, he was the "best" (??) doc in town. Please don’t get me wrong, my life has definitely changed for the better, much better, since I found ASL and all the corresponding info. Your hard work and KC’s are invaluable. Thanks again! Jackie "Andy" wrote in message

news:qnoqNcDLFyZ+EwO7@kitzbuhel.demon.co.uk… > In article , > Jackie K. wrote > >"Andy" wrote in message > >news:rzwqIuTrIiZ+EwvZ@kitzbuhel.demon.co.uk… > [ > >> Point them at

http://www.kitzbuhel.demon.co.uk/lupus/faqshets/faqs05.htm - Hide quoted text -- Show quoted text -> [ > >I would but "You can't trust what you read on the internet, you know." I > >might benefit from the fact that my doc left town - no other > >docs to take his patients. There's a rural health clinic with PAs. > >They KNOW they don't know it all! > Good point - but neither can they say "if it's on the internet it is > automatically false"! Point them also at who wrote it: > "LUPUS UK acknowledges with gratitude the assistance of Dr Graham Hughes > (St Thomas' Hospital, London) and Dr Caroline Gordon and colleagues > (Queen Elizabeth Hospital, Birmingham) in the provision of clinical > information towards the production of these fact sheets" > (Ie, the top UK consultants wrote the words, the LupusUK office did the > layout and production, and I scanned & proofread the printed sheets on > to my site) > -- > Andy [Chair, N E Lupus Group] > See http://www.kitzbuhel.demon.co.uk/lupus for more!

Response:

KC, I couldn’t agree more!!! Please see my response to Andy, posted a few minutes ago. And, thanks again for all your work, research, and sharing – as I said to Andy, it has changed my life. Humbly, Jackie "KC" wrote in message

news:va1f6vo1elvm1o8b6sbf5cnd8sq7d088d3@4ax.com… – Hide quoted text — Show quoted text -> On Wed, 05 Mar 2003 15:55:36 GMT, "Jackie K." > wrote: > >you know, normal for a mild lupie . By the way, this is > >why I have so much trouble communicating with doctors – > >even so, they just think I’m nuts – "Lupus doesn’t affect the > >brain." (Any comment regarding this might cause the post to be rejected!) > I don’t understand how any doctor can say that to be honest. Lupus > CNS is a well-known condition and in fact, "cognitive dysfunction" is > one of the 11 major criteria used by the ACR to diagnose Lupus (#8 – > Neurological Disorder). I’d recommend copying pages from Dr. > Wallace’s book as well as the UK lupus faqsheets (which were not > written by us lowly no-nothings but by a medical doctor), Pages > 100-115 of the Lupus Book by Dr. Daniel Wallace, MD are about the > effects on the nervous system due to lupus. largely about the CNS but > also about the peripheral nervous system. If you can’t get a copy of > this from your local library, let me know and I’ll be glad to copy > those pages and send them to you so you can send them to your doctors. > >It’s wonderful to have a place where I feel at home even when > >I just lurk. Even if you don’t hear from me, know that I > >follow all the posts and have sent many a prayer. > well, I’m glad you’re out there and glad you delurked for a bit. Take > care and know that you are in my thoughts and prayers. > kcat > KCat – I am not a medical professional. The contents of this post are

based soley on my experiences and opinions – Hide quoted text — Show quoted text -> http://www.ghg.net/schwerpt/mypage.htm > http://www.ghg.net/schwerpt/aslfaq30.htm > ("`-”-/").___..–”"`-._ > (`6_ 6 ) `-. ( ).`-.__.’`) > (_Y_.)’ ._ ) `._ `. “-..-” > _..`–’_..-_/ /–’_.’ ,’ > (()),-” (()),’ (((.-’

Response:

OMG! Ditto! on the right foot ‘dropsy’ and tripping! What the heck is it! (btw, my right leg is and has always been weaker than the left too… any takers on that one?) — Hugs from Shelagh http://continue.to/lupus "Andy" wrote in message > > Small world – my wife (it’s her who has the lupus) has the same problem > – and the same lack of answer!

Jackie K. wrote – Hide quoted text — Show quoted text -> >It’s the same that > >they just ignore me when I tell them that I have to be careful when > >walking because when I get tired (doesn’t take much ) I trip > >because my right foot tends not to pick itself up properly.

Response:

"Jackie K." wrote in message

news:Y5p9a.3664$wJ1.383508@newsread2.prod.itd.earthlink.net… > I feel good all over after those warm and fuzzies that were sent my way. > Truly! Thank You. > Why don’t I post more? Because a lot of the time, mentally > constructing a response is exhausting if not near to impossible. > Mostly, I wait and see if someone else has posted whatever info > I might have to share and usually someone has. Judith knows, > the same is true with conversation – if I’m tired or stressed – forget it! > It seems as tho’ after about a half an hour, the synaspses just give > up the ghost.

You should have heard our conversation when both of us "fogged out". We must have sounded as if we were speaking a foreigh language. > Recently I took a friend out to lunch to cheer here up (Yeah, right > ). Halfway thru the soup, my brain quit – I just couldn’t keep > up, couldn’t process input, etc. Sweet person that she is, she just > carried on but was reduced to "Read any good books lately?" > (with worried look on her face). Me, the constant reader, could not think > of a single book to respond about. Funny thing is I seeem to have complete > memory of what she said, what I was thinking, etc. > Anyone else relate to this??

> Considering that my professional forte was writing, proofing, editing, > this is one h*ll of a comedown! Today I’m coherent (I think – LOL); > tomorrow – who knows? > When you don’t hear from me, know that the fog is just too > thick to poke my way through. I’m most likely fine otherwise – > you know, normal for a mild lupie . By the way, this is > why I have so much trouble communicating with doctors – > even so, they just think I’m nuts – "Lupus doesn’t affect the > brain." (Any comment regarding this might cause the post to be rejected!)

BTDT, totally understand > It’s wonderful to have a place where I feel at home even when > I just lurk. Even if you don’t hear from me, know that I > follow all the posts and have sent many a prayer. > Let’s hear it for ASL!!

OK, but please post more often – even if it’s just to say hello.