Lupus FAQ » Lupus Treatment

A very GT

admin — Thu, 23 Dec 2004 00:00:00 +0000

Question:

Shelagh wrote: > My son is arriving this afternoon to stay with us till new year’s eve so I > am signing off with wishes to you all for the best of the season and hopes > that you will feel the warmth of good friends and family through the > holidays and into the new year! > ’see’ you all next year! 2005!

Welcome back, Shelagh ! Was Santi good to you? Hugs from me

Response:

"J" wrote in message> Welcome back, Shelagh ! > Was Santi good to you? > Hugs from me

Oh yes indeedy! We are so fortunate to be living in our part of the world don’t you think? I just can not believe the horror of that tsunami over christmas and it was enough to almost ruin the ‘holiday’ spirit……so we turned it into the spirit of giving to the needy and it helps assuage the ‘guilty’ type feelings that like to crop up when all is well in our world and all is lousy in someone else’s! Anyhow…….yes we had a really great visit and did lots of ‘visiting’ and had ‘company here’ and went to movies, out to dinners and the like. We were very busy all through the holiday season and it sped on by as always! I hope all of your days were as good too? and that santa did visit you too? hugs, from Shelagh http://clik.to/lupus

Response:

Shelagh wrote: > Yep we woke up to snow on new year’s day! cold and white and pretty! > I actually love it and wished it had been on the ground over christmas too; > ah well maybe next year. It has already melted away and our skies are clear > but cold; brrrr.

Yes, I saw cold on the weather report. Snow is pretty when we’re making snow angels or sitting indoors looking at Not so pretty when we’re standing knee deep and having to shovel long driveway and sidewalk, then shovel again from snowing, then shovel again from plow, then shovel again from snow. I was so glad to see it melt (for now)..phew !… > Nope, I have not heard a word from Grace…. nada. > I hate to call again as she hasn’t responded in kind nor to emails. > I kind of think that just maybe she wants to recupe and get strong without > the thoughts of this illness lupus infringing on her life; after all she got > rid of it and the drugs she was taking for it with the medical treatment > she had….too bad they will only do that when you are very sick with organ > involvement….. but it makes sense with the risks attached…. she has been > through so much and is still fighting strong; let’s hope she gets in touch > with us on her own; she knows we are here and on her side all the way.

I hope she’s okay. I worry when we don’t hear. Hugs to Shelagh from J

Response:

Shelagh wrote: > I hope all of your days were as good too? and that santa did visit you too?

Pretty good, Shelagh. Lots of snow shovelling, now it’s milder. I think we have your weather and you have ours. I hear it’s cold out there. Any news of Grace? Hugs J

Response:

"J" wrote in message > Pretty good, Shelagh. Lots of snow shovelling, now it’s milder. I think we > have > your weather and you have ours. > I hear it’s cold out there. > Any news of Grace? > Hugs > J

Yep we woke up to snow on new year’s day! cold and white and pretty! I actually love it and wished it had been on the ground over christmas too; ah well maybe next year. It has already melted away and our skies are clear but cold; brrrr. Nope, I have not heard a word from Grace…. nada. I hate to call again as she hasn’t responded in kind nor to emails. I kind of think that just maybe she wants to recupe and get strong without the thoughts of this illness lupus infringing on her life; after all she got rid of it and the drugs she was taking for it with the medical treatment she had….too bad they will only do that when you are very sick with organ involvement….. but it makes sense with the risks attached…. she has been through so much and is still fighting strong; let’s hope she gets in touch with us on her own; she knows we are here and on her side all the way. hugs from Shelagh

Response:

I’m so glad you made the sacrifice and went to the party! I wish I had things like that but….and I’ve said this before, my friends fled like rats on a burning ship when I got sick. I don’t get the invitations like I used to. And, unlike you, I don’t seem able to respond like I should. It’s hard when the energy level is down but after reading your post, I might try to put forth the extra effort next time. I’m glad your son is coming for a visit. It sounds like you have a great holiday planned. I wish you nothing but the best of times! Michael "Shelagh" wrote in message

news:BODyd.548634$Pl.343904@pd7tw1no… – Hide quoted text — Show quoted text -> Hello to all my NG friends! First of all, Happy Holidays to Everyone and > I wish for you all the blessings of peaceful contentment and good health! > MY very GT: > At 7pm last night I went out with my husband, (yes at night!), across the > street to my new neighbour’s open house and while there we met all the > people who live in our ‘marina area’ and we discovered that we have even > more friendly neighbours than just those we have met over the past 2 years! > I found that I had much in common with a few of the other women and I am > sure I will see more of several of them in the new year. > It was a fun night, lots of good food and a delicious ‘virgin’ punch as well > as playing a few games of shuffleboard. We stayed well over an hour and I > think I talked and laughed more than I have for a very long time lol! > It really felt good to ‘be out’ and dressed up a bit with other people who > are ‘healthy’ and most of all?! to feel well throughout the time spent! > You see, I almost didn’t go due to having a fever and just generally feeling > lousy…. BUT I knew that Wayne was really wanting to go and so I dug deep > and pulled up all my resources, got dressed up and we headed out; and while > breathing in deep the cold and salty sea air on the walk down the road I > could feel my fever cooling and my aches easing and throughout the gathering > I truly enjoyed myself! > ‘Someone’ was with me last night, someone who loves me, my very own angel. > (oh yes, I am very tired this morning but nothing a nap won’t fix!) > My son is arriving this afternoon to stay with us till new year’s eve so I > am signing off with wishes to you all for the best of the season and hopes > that you will feel the warmth of good friends and family through the > holidays and into the new year! > ’see’ you all next year! 2005! > till then, hugs from Shelagh

Response:

Hello to all my NG friends! First of all, Happy Holidays to Everyone and I wish for you all the blessings of peaceful contentment and good health! MY very GT: At 7pm last night I went out with my husband, (yes at night!), across the street to my new neighbour’s open house and while there we met all the people who live in our ‘marina area’ and we discovered that we have even more friendly neighbours than just those we have met over the past 2 years! I found that I had much in common with a few of the other women and I am sure I will see more of several of them in the new year. It was a fun night, lots of good food and a delicious ‘virgin’ punch as well as playing a few games of shuffleboard. We stayed well over an hour and I think I talked and laughed more than I have for a very long time lol! It really felt good to ‘be out’ and dressed up a bit with other people who are ‘healthy’ and most of all?! to feel well throughout the time spent! You see, I almost didn’t go due to having a fever and just generally feeling lousy…. BUT I knew that Wayne was really wanting to go and so I dug deep and pulled up all my resources, got dressed up and we headed out; and while breathing in deep the cold and salty sea air on the walk down the road I could feel my fever cooling and my aches easing and throughout the gathering I truly enjoyed myself! ‘Someone’ was with me last night, someone who loves me, my very own angel. (oh yes, I am very tired this morning but nothing a nap won’t fix!) My son is arriving this afternoon to stay with us till new year’s eve so I am signing off with wishes to you all for the best of the season and hopes that you will feel the warmth of good friends and family through the holidays and into the new year! ’see’ you all next year! 2005! till then, hugs from Shelagh

Response:

- Hide quoted text — Show quoted text -Shelagh wrote: > Hello to all my NG friends! First of all, Happy Holidays to Everyone and > I wish for you all the blessings of peaceful contentment and good health! > MY very GT: > At 7pm last night I went out with my husband, (yes at night!), across the > street to my new neighbour’s open house and while there we met all the > people who live in our ‘marina area’ and we discovered that we have even > more friendly neighbours than just those we have met over the past 2 years! > I found that I had much in common with a few of the other women and I am > sure I will see more of several of them in the new year. > It was a fun night, lots of good food and a delicious ‘virgin’ punch as well > as playing a few games of shuffleboard. We stayed well over an hour and I > think I talked and laughed more than I have for a very long time lol! > It really felt good to ‘be out’ and dressed up a bit with other people who > are ‘healthy’ and most of all?! to feel well throughout the time spent! > You see, I almost didn’t go due to having a fever and just generally feeling > lousy…. BUT I knew that Wayne was really wanting to go and so I dug deep > and pulled up all my resources, got dressed up and we headed out; and while > breathing in deep the cold and salty sea air on the walk down the road I > could feel my fever cooling and my aches easing and throughout the gathering > I truly enjoyed myself! > ‘Someone’ was with me last night, someone who loves me, my very own angel. > (oh yes, I am very tired this morning but nothing a nap won’t fix!) > My son is arriving this afternoon to stay with us till new year’s eve so I > am signing off with wishes to you all for the best of the season and hopes > that you will feel the warmth of good friends and family through the > holidays and into the new year! > ’see’ you all next year! 2005! > till then, hugs from Shelagh

What a wonderful GT. Thanks for sharing and back at ya for all the good wishes, J

Response:

I need a friends

admin — Tue, 07 Dec 2004 00:00:00 +0000

Question:

Hi , How is all…..Iam new to this and also to webtv. So I have got lot’s to learn. I also have lupus since 1979 and all I can say is that I hurt right now and can’t sleep. It is 6:32 a.m. Boy I wish I could just sleep and be at peace. Iam a care giver of two now and with myself three. The best thing to have happen for me is a grandbaby born 11-2-2004. To my only son. People Iam just so tired of being sick and useless at times. It is like my family just don’t understand what Iam going through, an that hurt’s. Each year is a blessing and joy just to wake up each day knowing that Iam still hear. Ive got a birthday this month the 23 an that in itself is great because I clould not have been hear to make it this far,. Well I just wanted to say love to all and I hope to be able to join in the group Cheryl

Response:

Welcome to the group Cheryl and please post whenever you need to rant, rave, question or just to talk! This group is very supportive and understanding and I can hear that you are having a rough go of it with your lupus and your life generally…. it can be a tough row to hoe and I wish you all the best especially over this holiday season coming up… I think Christmas is one of the worst times for all of us cause of the pressures of society to ’socialize’ and ‘entertain’ and the shopping and cooking etc.! My best advice is to lie low and let someone else take the reins for a while! Sleep is so all important when you are sick… you do most of your healing while asleep so do try to get more time alone so you can lie down and at the very least just close your eyes and rest! The world won’t stop cause you are resting and I guarantee you everyone will get by just fine and still be waiting for you at the end of the season!! Just take one day (or one moment) at a time and don’t let anyone talk you into doing more than you are comfortable with!! I will send you ‘well wishes’ and a happy holiday wish to you and your family! Take good care of ‘you’ first and then focus on the others! hugs from Shelagh – Hide quoted text — Show quoted text -"cheryl blount" wrote in message > Hi , > How is all…..Iam new to this and also to webtv. So I have got lot’s to > learn. I also have lupus since 1979 and all I can say is that I hurt > right now and can’t sleep. It is 6:32 a.m. Boy I wish I could just > sleep and be at peace. Iam a care giver of two now and with myself > three. The best thing to have happen for me is a grandbaby born > 11-2-2004. To my only son. People Iam just so tired of being sick and > useless at times. It is like my family just don’t understand what Iam > going through, an that hurt’s. Each year is a blessing and joy just to > wake up each day knowing that Iam still hear. Ive got a birthday this > month the 23 an that in itself is great because I clould not have been > hear to make it this far,. > Well I just wanted to say love to all and I hope to be able to join in > the group > Cheryl

Response:

How’s it going Cheryl? Had of posted sooner but I was back in the medical gauntlet of things with a weekend stay in the cardiac ward. Now i am trying to get me a nebulizer so i do not have to run across town for a breathing treatment. My lungs are doing their thing and it is amazing how bad they do not like me after I eat something. I ate a sub sandwich last night and my stomach crunched down on my lungs and said, "Okay baby, that’s enough air for you!" Okay, so maybe it was not quite like that but where my health trails off, my imagination has picked up. How do you like your new webtv? I am sending you a CC of this incase you have trouble getting back to the newsgroup. I have no idea how about’s you get to the usenet groups via webtv so you are one up on me. All I know is via the MS Outlook. Is there a website? ANd happy belated birthday and may there be many more to follow. We won’t count the numbers; just the memories, okay? I am trying to get me a nebulizer now because I do not feel like sleeping like the elephant man tonight. Also, I have grown quite fond of breathing. All someone has to do is teach me how to use one of them suckers but wanna know something, I have a very good idea! Breathe in – Breathe out! Wax on.. Wax off! Happy Blessed Holidays! Always, ..

Cotz sunblock does not work as advertised

admin — Mon, 27 Sep 2004 00:00:00 +0000

Question:

In article , Dandelion77 wrote >> Is it possible that while it has high SPF – which as I understand it >> blocks UVB – it has no UVA protection which you also require? >> — >> Andy Taylor [Chair, N E Lupus Group] >I have used Cotz since it first came out. I had done a lot of research on >different sunblocks, and Cotz was the best non-chemical sun block I could >find (according to advertising and SPF rating). Chemical sunblocks bother >me. Cotz is a physical sunblock and is supposed to protect for the entire >light spectrum. I don’t know what spectrum of light that bothers me, so I >just want to protect against all of them.

More explanation.. maybe too much Light comes in a continuous spectrum; visible light runs from red to violet (think of a rainbow!) and red has a longer wavelength than violet. ‘Light’ is also known as (electromagnetic) radiation. Radiations of longer wavelength than red are called infra-red; those of wavelength shorter than violet are called ultra-violet. The ultra-violet is divided into A, B, and C. Your eye cannot see infra-red or ultra-violet, although your body may react to them. Drawing an "extended rainbow" may help… long wavelength – - – - – - - – - – - — – - – short wavelength infra-red red yellow green blue violet UVA UVB UVC Albert Einstein teaches us that waves of light can also be regarded as particles – little lumps of energy. The shorter the wavelength the bigger the lump: and it’s the size of the lumps (as well as how many of them) hitting you that cause the damage. UVA comes in medium lumps; UVB in big lumps; and UVC in ginormous lumps which, luckily, are absorbed by the atmosphere. [That's why people worry about the Ozone Layer - it's what absorbs the UVC from the sun; without it we fry.] It’s been known for some time that UVB is bad for you. What’s only recently been realised is that UVA is also bad, though not as bad. "SPF" is a measure of the ability to block UVB. There’s a different system to measure UVA blocking – I think it’s a "star rating". If UV bothers you, you need something that blocks both UVA and UVB. And of course do what you can to minimise exposure. — Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

In article , Dandelion77 wrote: >I am mad that I have wasted months on the Cotz product thinking it was >protecting me when in fact it was not protecting me. I wore Cotz to the >makeup store, driving 1/2 hour under an overcast sky. At the store, I wiped >off the Cotz, and my face was beet red underneath. The Cotz just was not >protecting me. I am not really all that keen on the Dermablend, but >Dermablend has significantly reduced the burning sensation I get from too >much light. Dermablend allows me to go to the store without feeling as bad. >If I can find a better product than Dermablend, I will use it.

You might try Total Block, which has chemical sunscreens in it as well as the physical sunblocks. COTZ is really meant for people who cannot tolerate the stronger sunscreens. It may be that you’re not using the appropriate product for your problem. See my next paragraph… >Also >according to FDA guidelines, the highest SPF companies are supposed to claim >is SPF 30, so we really don’t know if the Dermablend is better or worse than >the Cotz.

This is outdated information. By some years. It was true when the only sunscreen material available was PABA, but it’s no longer true. There are a great many more sunscreens out there now, many of which block both UVA and UVB. Physical blocks also exist, which are _all_ that’s in COTZ. That may be the other reason you’re not having as much luck with it. Dermablend has chemical sunscreens in it along with the titanium dioxide block. If your sensitivity is to UVA, you need a sunscreen that blocks that band. Avobenzone, salicylates, oxybenzone, sulisobenzone, and cinnimates are all good broad-band sunscreens. Avobenzone in particular is used for UVA blocking. This is when it pays to read the labels carefully and know what each ingredient does. >That is why I came up with my black stripe test. If the product >covers the black stripe; odds are is that it will protect me. Just try the >black stripe test and you will see what I mean about the Cotz lack of >protection. Also under SPF testing, they use like a teaspoon or something >like that. I have tried globbing a teaspoon of Cotz on my face – which does >not work at all under real world conditions. As for UVA, UVB, I don’t know >what part of the light spectrum bothers me, so I just want to block out >everything.

The trick to applying a lot of sunblock is to do it in layers. The stuff will dry if you do it carefully. Maybe I have better luck because I’ve done theatrical makeup for so long. You’re right that sunblocks with a lot of titanium or zinc oxide in them will make your face look pearly white, but that’s a simple consequence of having a mineral pigment as the sunblock. Since I’m nearly that white to start with, it’s never bothered me. And again, applying setting powder afterwards just like you would with the Dermablend will improve the staying power of any makeup or sunblock. UVB in general causes sunburn. UVA penetrates deeper and is more likely to cause photosensitivity reactions and affect connective tissues. It sounds like you have a combination of using the wrong product for your problem and not using nearly enough, as well needing a waterproof product to at least partially protect from streaking and running. Each of us is going to have different results. I positively fry if I use something that doesn’t have a high percentage of titanium dioxide in it, and SPF30 is the absolute lowest rating I can use. The Dermablend would be useless unless I used it as a tattoo concealer (which is essentially what you’re doing). I use it to cover scars, and by itself, it’s not nearly enough. When applied over COTZ or Total Block or a similar sunblock, it’s fine. I tend to use COTZ when my skin is too inflamed to tolerate the stronger chemical sunblocks in Total Block (or even the stuff in Banana Boat SPF 50). Otherwise, I’d rather get the higher coverage. >I also bought some of the light tan Solumbra sunblock material. I just held >the tan Solumbra material up to the light and I can see the light plainly >through it which means it is not protecting me much at all. My blue denim >shirt under the light test shows a vague image of the light and therefore >protects me much better. The point being that the expensive Solumbra tan >material might beat out normal tan material, but fails miserably against a >normal blue denim material.

Thickness and weave of the material does make a difference, yes. The advantage of Solumbra and Solarweave is that you won’t get heatstroke while wearing them. For some of us, that’s a pretty pressing matter. The dark colored Solumbra fabrics block considerably more UV than the light colored ones do, which was confirmed by the company reps. They now recommend that anyone with severe UV sensitivity buy their darker colors. [...] >PS I am still trying to figure out what is wrong with me. The allergist just >finished his tests and told me to come back in April. My face is still >swollen and continues reacting with no real hope in sight. Sigh!

Have you been tested for autoimmune diseases yet? I’ve found that the dermatologist was actually pretty useless, even though I had classic discoid lupus lesions. It wasn’t until I saw a rheumatolgist that I got treatment that did anything significant. I’ve had UV sensitivity since before sunscreens were available. And found out the hard way that PABA-based ones could make autoimmune problems worse. I’ve learned to read the labels very, very carefully over the years and to read the reasearch. I’ve seen the FDA change their opinion multiple times on what was considered the "practial limit" for sunscreens. At one point, 15 _was_ the highest rating out there, now it’s considered the minimum safe rating you should use. So take any pronouncements on what the "real" highest rating is with a grain of salt. Especially since a lot of the info out on the net doesn’t get updated regularly. — Lee M.Thompson-Herbert l…@retro.com KoX 1995, SP4 Head Muso, White Rats Morris See my CafePress Shops: http://www.retro.com/employees/lee/CafePress.html "A head-on collision between Morticia Adams and Martha Stewart"

Response:

> Is it possible that while it has high SPF – which as I understand it > blocks UVB – it has no UVA protection which you also require? > — > Andy Taylor [Chair, N E Lupus Group]

I have used Cotz since it first came out. I had done a lot of research on different sunblocks, and Cotz was the best non-chemical sun block I could find (according to advertising and SPF rating). Chemical sunblocks bother me. Cotz is a physical sunblock and is supposed to protect for the entire light spectrum. I don’t know what spectrum of light that bothers me, so I just want to protect against all of them. But Cotz, SPF 58, does not work for me and failed miserably when I tried to cover a black stripe with a coating of Cotz. The objective of the black stripe test is that if the product covers the black stripe, it will protect me from the sun. What I need is a sunblock or makeup that provides equivalent protection of a cloth mask.Cotz has an SPF rating of 58 which means that I should be able to withstand 58 times as much exposure to the sun than without wearing Cotz. Maybe in lab testing, Cotz has an SPF rating of 58, but in real life, Cotz just doesn’t provide that kind of protection. Dermablend with only an SPF rating of 30 protects me much better and completely covers the black stripe. But even Dermablend does not provide the same protection as wearing a mask. Also in lab testing for SPF rating they use a much large quantity than it is physically possible to put on one’s face. I have tried globbing a teaspoon of Cotz on my face, but the coating can only get so thick before it drips or wipes off. I have also tried putting Dermablend on really thick, but a thick coating melts through the setting powder and eventually gets sticky. Also the thicker the coating the more it accentuates my already accentuated wrinkles from my daily facial swelling. I have tried double coats of Dermablend creme/powder, and that looks really bad – cakey and cracked. But when the only alternative is wearing a mask, I can live with the cakey and cracked. All I want is a hypoallergenic non-chemical sunblock that provides 100% protection from the sun. I have confirmed nickel, citrus and fragrance allergies. Products claiming to be hypoallergenic or dermatoligist tested have stuff like grapefruit oil and other citrus ingredients or fragrances. Dandelion

Response:

In article , Dandelion77 wrote >For those of you with extreme sun sensitivity, don’t waste your money on >Cotz sunblock, SPF 58; it just doesn’t work.

[snip detail] Is it possible that while it has high SPF – which as I understand it blocks UVB – it has no UVA protection which you also require? — Andy Taylor [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

Lee, Sounds like you know about sun sensitivity. I would just like to point out that we should not believe everything we read. We should just do some common sense tests to find out if a product is actually working. For me and probably you, a product that actually works can mean a world of difference in our lives. For me, it is the difference between staying home and wearing a mask or going out and living a normal life. Cotz was not protecting me, and every time I left the house I would suffer for it. I am very sensitive to light. I too have replaced all of the flourescents with incandascent light bulbs. Drapes shut, lights off, and I mostly wear a cloth mask most of the time even indoors. In the few minutes that I put my makeup on, I can watch my face turn red in reaction to the incandscent light in the bathroom. I am mad that I have wasted months on the Cotz product thinking it was protecting me when in fact it was not protecting me. I wore Cotz to the makeup store, driving 1/2 hour under an overcast sky. At the store, I wiped off the Cotz, and my face was beet red underneath. The Cotz just was not protecting me. I am not really all that keen on the Dermablend, but Dermablend has significantly reduced the burning sensation I get from too much light. Dermablend allows me to go to the store without feeling as bad. If I can find a better product than Dermablend, I will use it. Also according to FDA guidelines, the highest SPF companies are supposed to claim is SPF 30, so we really don’t know if the Dermablend is better or worse than the Cotz. That is why I came up with my black stripe test. If the product covers the black stripe; odds are is that it will protect me. Just try the black stripe test and you will see what I mean about the Cotz lack of protection. Also under SPF testing, they use like a teaspoon or something like that. I have tried globbing a teaspoon of Cotz on my face – which does not work at all under real world conditions. As for UVA, UVB, I don’t know what part of the light spectrum bothers me, so I just want to block out everything. I also bought some of the light tan Solumbra sunblock material. I just held the tan Solumbra material up to the light and I can see the light plainly through it which means it is not protecting me much at all. My blue denim shirt under the light test shows a vague image of the light and therefore protects me much better. The point being that the expensive Solumbra tan material might beat out normal tan material, but fails miserably against a normal blue denim material. For others suffering this affliction, here is a tip for making a cloth mask. I use dark colored T-shirt material for the mask. Now on my second year of extreme sun allergy, I have refined my mask – modeling it after surgeons type mask which hooks over the ears. Take a piece of cloth and pull it snug over face. Mark and cut holes for ears so that the material will be snug on face. Now put cloth back on face using ear holes. Pin/mark the cloth to follow the contour of nose and chin. Sew/cut countoured mask. Put back on face and mark eye outline and hole for mouse/nose, then cut cloth. Finally trim bottom and sides of mask for desired sun protection. The mask is ugly, but comfortable and protects. Very easy to unhook from the ear and remove. Dandelion PS I am still trying to figure out what is wrong with me. The allergist just finished his tests and told me to come back in April. My face is still swollen and continues reacting with no real hope in sight. Sigh!

Response:

In article , Dandelion77 wrote: >For those of you with extreme sun sensitivity, don’t waste your money on >Cotz sunblock, SPF 58; it just doesn’t work. I wasted months of suffering >on this product because I thought it was protecting me. Also when I sweat, >Cotz disintegrates and my whole face turns white, and I look like the robot >guy on Star Trek, and then it drips off my chin – a scarey sight indeed. >Adding more Cotz sunblock while sweating is futile.

What you’re complaining about is that Cotz isn’t waterproof. This shouldn’t be that much news. I use the stuff as well and haven’t had problems. It isn’t quite as good as Total Block SPF 65, but it’s fine. >[Story about using Dermablend because it's opaque deleted]

Except that I also use Dermablend. It really doesn’t have that high an SPF rating, and I haven’t found it to work nearly as well as Total Block. Or Cotz if you can get it to stay on. It sounds like your real complaint is that you’ve been using a product that isn’t sweatproof. You could actually set the Cotz with white powder the same way you do the Dermablend. That’s a common stage makeup trick. Of course, you’d be even whiter, but hey. Some of us haven’t got any skin pigment left anyway… ;} And before you say "But you’re probably not that sensitive to UV": I get skin lesions from fluoresent lighting, compact fluoresents thow a more concentrated beam so those are often worse. Not wearing sunblock and a hat when I go to the hospital or my doctors’ offices will result in spectacular sunburns. Found this out the hard way when I took my husband to the ER in the middle of the night. I get positively fried by unshielded halogen lighting. The previous owners of my current house put in high-efficiency halogen track lighting. It took me about 2 hours to realize why I felt like I was being burned to death inside the house and replaced all the floods with incandecents. We probably doubled our electricity bill, but so it goes… And if you’re going to buy Solumbra fabric clothing, the company reps I talked to have confirmed that their dark colors block more UV than the light colors do. I’m one of the people who talked them into offering more dark colored items in their catalogue. Especially since they tell people with severe UV sensitivity to buy the dark colored stuff (hard to do when they were offering almost nothing in the dark colors). The difference between 95% and 98% of UV blocked really _does_ make a difference for some of us. — Lee M.Thompson-Herbert l…@retro.com KoX 1995, SP4 Head Muso, White Rats Morris See my CafePress Shops: http://www.retro.com/employees/lee/CafePress.html "A head-on collision between Morticia Adams and Martha Stewart"

Response:

- Hide quoted text — Show quoted text -Lee Thompson-Herbert wrote: > Except that I also use Dermablend. It really doesn’t have that high > an SPF rating, and I haven’t found it to work nearly as well as Total Block. > Or Cotz if you can get it to stay on. It sounds like your real complaint > is that you’ve been using a product that isn’t sweatproof. You could > actually set the Cotz with white powder the same way you do the Dermablend. > That’s a common stage makeup trick. Of course, you’d be even whiter, but > hey. Some of us haven’t got any skin pigment left anyway… ;} > And before you say "But you’re probably not that sensitive to UV": > I get skin lesions from fluoresent lighting, compact fluoresents thow a > more concentrated beam so those are often worse. Not wearing sunblock > and a hat when I go to the hospital or my doctors’ offices will result > in spectacular sunburns. Found this out the hard way when I took my > husband to the ER in the middle of the night. > I get positively fried by unshielded halogen lighting. The previous owners > of my current house put in high-efficiency halogen track lighting. It took > me about 2 hours to realize why I felt like I was being burned to death > inside the house and replaced all the floods with incandecents. We probably > doubled our electricity bill, but so it goes… > And if you’re going to buy Solumbra fabric clothing, the company reps I > talked to have confirmed that their dark colors block more UV than the > light colors do. I’m one of the people who talked them into offering more > dark colored items in their catalogue. Especially since they tell people > with severe UV sensitivity to buy the dark colored stuff (hard to do when > they were offering almost nothing in the dark colors). The difference > between 95% and 98% of UV blocked really _does_ make a difference for > some of us.

Thanks for your post, Lee. Very important. The halogens save $$ (over a longer period and depending on local hydro rates). In terms of environmental they’re also better but obviously not for those with Lupus J

Response:

For those of you with extreme sun sensitivity, don’t waste your money on Cotz sunblock, SPF 58; it just doesn’t work. I wasted months of suffering on this product because I thought it was protecting me. Also when I sweat, Cotz disintegrates and my whole face turns white, and I look like the robot guy on Star Trek, and then it drips off my chin – a scarey sight indeed. Adding more Cotz sunblock while sweating is futile. I have an extreme sun allergy, and have used Cotz since it first came out. For the past year I have kept shelling money out for Cotz, and I have wondered why Cotz with an SPF 58 rating wasn’t protecting me from an allergic reaction to the sun. Duh! I finally figured out that I could see my red chin through the Cotz coating on my face. A physical sun block should block the sun from reaching my skin, and if I could see my red chin even with Cotz on my face, Cotz wasn’t protecting me. To find a product that might actually protect me, I made a black magic marker stripe on my arm to test different products. My logic was that if the product covered the black stripe, the product would not let the sun reach my skin. Cotz did little to cover the black stripe (looked like a black stripe with a thin thin white coating), while other products like Dermablend cover creme, SPF 30, completely covered the black stripe and made the black stripe disappear. I am now using Dermablend cover creme, and my allergic reactions have decreased considerably. With Dermablend, I can now go on a 2 to 3 hour jaunt to the store without my chin burning and feeling like I have been stomped on. I tested various camaflouge cosmetics which are used for covering birthmarks, surgery etc. including Dermablend, Coverblend, and Maximum Coverage by Estee Lauder. Of those I tested, Dermablend covered the black stripe the best. As for Dermablend cover creme, if it covers a black stripe, it will cover up most skin imperfections. Dermablend cover creme with the setting powder does accentuate wrinkles. (There also may be some makeup tricks I don’t know about, but it surely does accentuate my wrinkles which are already enhanced by my allergic condition. Being that my alternative is getting sick or wearing a mask, Dermablend is the lesser evil.) Lessons I learned: I have to use the setting powder otherwise the cover creme will rub off on everything. The loose setting powder should be applied with a large makeup brush!! Once the powder is on, Dermablend is very difficult to get off; either use the Dermablend remover or a cold cream (cheaper). I have sensitive skin, and the cover creme doesn’t bother me, but the Dermablend remover does bother me. Instead I am using Noxema cleanser for sensitive skin, but it takes several applications to remove the Dermablend. I also am using an Almay powder because it is cheaper. And so I continue my quest to resume a somewhat normal life while living with a sun allergy. Dandelion PS A simple test for the effectiveness of the sun protection of clothing is to hold it up to a light and look through the cloth. If you can see through the cloth, it isn’t protecting you from the sun. I discovered this after working in the garden and noticing heat on my skin while wearing a light weight man’s dress shirt. Once I did the light test, it was like discovering how ultra stupid I was. Now I wear long sleeved denim shirts which block light much more effectively.

Response:

hello?

admin — Sun, 11 Apr 2004 00:00:00 +0000

Question:

Barbara, Thank you for responding to my post! I have some questions below. – Hide quoted text — Show quoted text —— Original Message —– From: "Barbara Reutercrona" Newsgroups: alt.support.scleroderma Sent: Sunday, April 11, 2004 1:40 PM Subject: Re: hello? > Hello Henk, > Have you had a skin biopsy done to determine whether you do have morphea? A > dermatologist can do this for you during an office visit and have results > back in a matter of days. I have two dark oval patches. One on the left side of my neck and the other on the lower-left area of my back. Both areas have been biopsised but the results are that I didn’t not have scleroderma. From what I have been experiencing, and comparisons to photos of people that have localized schleroderma I believe I do have Morphea. > This method was used to diagnose my localized SD > and I did have success in eliminating many of the discolored patches with a > long series of PUVA treatments. As soon as you have a definitive diagnosis > you can begin researching methods of treatments. Does your skin pigmentation looking 100% normal now? Patches are totally gone? I am having a very hard time getting diagnosed but it looks like the treatment witht he PUVA will not hurt if I try it. How long did it take before you saw and improvemets? Do you have any photos that I can take a look at? How long did you have your plaques before you had treatments? Do you have any idea what has caused this? Did you have any type of surgeries? > In case you want to read up > on PUVA here are a couple of links. If you have any questions you would like > to ask me, feel free!! > http://www.dermnetnz.org/index.html > http://www.skinsite.com/info_puva_phototherapy.htm > Regards, Bobbie R. Thanks for those links! Is it okay if I emails you with questions in the further? Thank you! -Henk

Response:

Barbara! Do you receive mail at bah…@techline.com? I tried to email you earlier but was it bounced. "Barbara Reutercrona" wrote in message

news:109bgjdqjtpk9c6@corp.supernews.com… > Henk, > When the results of the biopsies determined you did not have Morphea, were > you given any diagnoses at all? I am a little confused.

No diagnoses at all! The results came back saying no apparent signs of scleroderma, leprosy, or fungi. But there is a comment that it could be related to an autoimmune disease. I’ve had blood work done to test for just about everything including HIV and everything looks normal. Most of the doctors I have seen have no idea what is going on with my skin. They just tell me sorry and say it isn’t that bad! I went to a dermatology conference where I was one of several patients that were examined by about 100 doctors. About 10 of them right off the bat told me that I had morphea. The others had no idea what to think. All the doctors met up that evening and discussed all the cases they saw. I was then called by one of the nurses and she said that nothing could be done and that I should just live with it. I have seen photographs of people that have these dark plaques on their neck and trucks that have been diagnosed as having morphea! These photos look exactly like the marks on my body! Same shape, same color, you get the idea. The area on my lower seems to follow the text book case of Morphea. When I read the medical description of how the marks look, it is how mine looks. It seems that I have a mild case of this and possibly the person examining the biopsy is looking for something different. There seems to be so many variations that I don’t feel confident from the results that I don’t have morphea. >What other symptoms > beside the dark patches do you have? The onset of my Localized SD was > accompanied by extreme itchiness from the top of my head to the bottom of my > feet, spots that varied in size from a quarter to the size of a plate, > colors that went from yellows, reds, blues, to brown.

The fist sized bruise looking mark on the side of my neck feels tight and itchy. Some days it is not at bad as others. The one on my lower back is very smooth and looks to be lower that the normal skin. (looks to be sunken). I now have a hard lump in this dark area and I went to see a dermatologist at Kaiser. I am using a topical steroid on my neck and on my back. Flucinonide Cream USP, 0.05% on my back. Desonide Cream 0.05% on my neck. I am using this for 4 weeks twice a day. I made a deal with the doctor that he would refer me to a rheumatologist when I return. I am not sure if this is a good move but I am trying to find someone who has actually seen morphea before. All the doctors I have seen don’t seem familiar with it. I have had this condition for about 4 years now and it seems about the same. I now have health insurance so I am ready to find a solution for this. > Much of my skin turned > hard from my neck to below my knees.Every piece of clothing irritated me > except soft cotton turned inside out so the seams did not rub against me. I > am not by any means trying to upset you as no two cases of SD are the same > as I am sure you know. Before I go any further, let me put your mind at ease > by telling you that after the first few years, my skin returned to 80% > normal.

This was after the PUVA treatments? Again I have had this for 4 years now and no significant changes. > All of the hardness is gone and I just have a few discolored areas > that are not noticeable to anyone but me. I have read this happens in most > cases of adult onset Localized SD. Whether it was the PUVA treatments or the > disease running its course, I cannot say. I took treatments for a couple of > years, twice a week for months at a time.(I happen to have wonderful medical > coverage, thank goodness!) It has been seven years now since I was first > diagnosed and most of my symptoms are gone.

Wow! That is great! I am happy for you! Does you skin look aged after the PUVA treatments? You took the medication along with the light treatment? And also did you have to wear those sunglasses that wrap around your head? I now have health insurance with Kaiser. How do I go about having photo therapy performed? Did you just see a dermatologist for this or are their specialists? > I never took any photos, I’m sorry to say. As for knowing what causes this > fickle disease, even the experts do not know yet, but they are working on > it, you can be sure. > Prior to the onset of the disease, I had one major surgery six years > earlier. Do you think there is a correlation?

It seems that most of the people I have talked to have had some type of surgery or trauma to a particular area of their body. What type of surgery did you have if you don’t mind me asking? > Yes, I would be more than happy to answer any of your emails. But know, I am > in not an expert by any stretch of the imagination. I am just as confused > about SD as most others that have it can attest to. > Warm regards, Bobbie R.

Thanks for your time Bobbie! I appreciate it deeply! -Henk

Response:

Nell, Thank you very much for your response. I am going to be going back to see the dermatologist next week and I want to ask for a referral to a rheumatologist. What reasoning should I give the doctor to make him want to do the referral? Why the experience with Lupus?! Thank you very much for your advice. -Henk "Nell" wrote in message

news:npc3a05epvrcneh4hgnk0ab9aiu2oecubh@4ax.com… – Hide quoted text — Show quoted text -> On Tue, 11 May 2004 05:56:12 GMT, "HENK VISSER" > wrote: > >The one on my lower back is very smooth and looks to be lower > that the > >normal skin. (looks to be sunken). I now have a hard lump in this dark area > >and I went to see a dermatologist at Kaiser. I am using a topical steroid on > >my neck and on my back. > >Flucinonide Cream USP, 0.05% on my back. > >Desonide Cream 0.05% on my neck. > >I am using this for 4 weeks twice a day. I made a deal with the doctor that > >he would refer me to a rheumatologist when I return. I am not sure if this > >is a good move but I am trying to find someone who has actually seen morphea > >before. All the doctors I have seen don’t seem familiar with it. > > >-Henk > Henk, your best bet is a rheumatologist; even better would be one with > at least some experience with lupus or scleroderma. > My best wishes to you. > Nell

Response:

Neil! Thanks for the info! I am going to schedule an appointment with a rhemuatologist and I’ll report back! Thanks! -Henk "Nell" wrote in message

news:t1m2c0li52pbooogb031uiasd8d30eo65r@4ax.com… – Hide quoted text — Show quoted text -> On Thu, 27 May 2004 06:35:23 GMT, "HENK VISSER" > wrote: > >Neil! Thanks for getting back to me! Don’t worry about the response time! > >Do you have any type of skin discoloration? Dark oval patches? Are you > >treating these? If so how so? PUVA? > >-Henk > No oval patches but one nurse (in the Midwest; I grew up on the West > Coast ) remarked my complexion but, then, I was called "French > Fry" as a kid and I hadn’t noticed any difference. My skin is actually > lighter than it was when I was growing up because I moved to regions > that have actual seasons (presently in the Northeast). I do have tiny > _light_ patches but I scar easily and they show and the patches were > probably from IVs. I only have them on my forearms though come to > think of it I have some "freckling" that I didn’t have years ago. I’ll > bring it up when I go to my rheumy on Monday. Find out if it’s age > (I’m only in my mid-50s), exposure to sun as a kid, or > scleroderma/lupus. > Hmm, made me look. > Nell

Response:

Anyone out there?

Response:

Neil! Thanks for getting back to me! Don’t worry about the response time! Do you have any type of skin discoloration? Dark oval patches? Are you treating these? If so how so? PUVA? -Henk "Nell" wrote in message

news:sig5b012sb4u8pia681jf52rsvudm0n7k9@4ax.com… – Hide quoted text — Show quoted text -> Henk, > The reason for the experience is that they’ll know what they’re > looking at and be able to ask you the right questions as to get the > best response from you and thus set you on the right track as to > diagnoses and treatment. > I have scleroderma with features of lupus, which is why I mentioned > lupus. > Hope that helps. > Sorry for my slow response. > Nell > On Wed, 19 May 2004 06:26:00 GMT, "HENK VISSER" > wrote: > >Nell, > >Thank you very much for your response. > >I am going to be going back to see the dermatologist next week and I want to > >ask for a referral to a rheumatologist. What reasoning should I give the > >doctor to make him want to do the referral? Why the experience with Lupus?! > >Thank you very much for your advice. > >-Henk > >"Nell" wrote in message > >news:npc3a05epvrcneh4hgnk0ab9aiu2oecubh@4ax.com… > >> On Tue, 11 May 2004 05:56:12 GMT, "HENK VISSER" > >> wrote: > >> >The one on my lower back is very smooth and looks to be lower > >> that the > >> >normal skin. (looks to be sunken). I now have a hard lump in this dark > >area > >> >and I went to see a dermatologist at Kaiser. I am using a topical steroid > >on > >> >my neck and on my back. > >> >Flucinonide Cream USP, 0.05% on my back. > >> >Desonide Cream 0.05% on my neck. > >> >I am using this for 4 weeks twice a day. I made a deal with the doctor > >that > >> >he would refer me to a rheumatologist when I return. I am not sure if > >this > >> >is a good move but I am trying to find someone who has actually seen > >morphea > >> >before. All the doctors I have seen don’t seem familiar with it. > >> > >> >-Henk > >> Henk, your best bet is a rheumatologist; even better would be one with > >> at least some experience with lupus or scleroderma. > >> My best wishes to you. > >> Nell

Response:

Hello Henk, Have you had a skin biopsy done to determine whether you do have morphea? A dermatologist can do this for you during an office visit and have results back in a matter of days. This method was used to diagnose my localized SD and I did have success in eliminating many of the discolored patches with a long series of PUVA treatments. As soon as you have a definitive diagnosis you can begin researching methods of treatments. In case you want to read up on PUVA here are a couple of links. If you have any questions you would like to ask me, feel free!! http://www.dermnetnz.org/index.html http://www.skinsite.com/info_puva_phototherapy.htm Regards, Bobbie R.

Response:

On Thu, 27 May 2004 06:35:23 GMT, "HENK VISSER" wrote: >Neil! Thanks for getting back to me! Don’t worry about the response time! >Do you have any type of skin discoloration? Dark oval patches? Are you >treating these? If so how so? PUVA? >-Henk

No oval patches but one nurse (in the Midwest; I grew up on the West Coast ) remarked my complexion but, then, I was called "French Fry" as a kid and I hadn’t noticed any difference. My skin is actually lighter than it was when I was growing up because I moved to regions that have actual seasons (presently in the Northeast). I do have tiny _light_ patches but I scar easily and they show and the patches were probably from IVs. I only have them on my forearms though come to think of it I have some "freckling" that I didn’t have years ago. I’ll bring it up when I go to my rheumy on Monday. Find out if it’s age (I’m only in my mid-50s), exposure to sun as a kid, or scleroderma/lupus. Hmm, made me look. Nell

Response:

Henk, The reason for the experience is that they’ll know what they’re looking at and be able to ask you the right questions as to get the best response from you and thus set you on the right track as to diagnoses and treatment. I have scleroderma with features of lupus, which is why I mentioned lupus. Hope that helps. Sorry for my slow response. Nell On Wed, 19 May 2004 06:26:00 GMT, "HENK VISSER" – Hide quoted text — Show quoted text - wrote: >Nell, >Thank you very much for your response. >I am going to be going back to see the dermatologist next week and I want to >ask for a referral to a rheumatologist. What reasoning should I give the >doctor to make him want to do the referral? Why the experience with Lupus?! >Thank you very much for your advice. >-Henk >"Nell" wrote in message >news:npc3a05epvrcneh4hgnk0ab9aiu2oecubh@4ax.com… >> On Tue, 11 May 2004 05:56:12 GMT, "HENK VISSER" >> wrote: >> >The one on my lower back is very smooth and looks to be lower >> that the >> >normal skin. (looks to be sunken). I now have a hard lump in this dark >area >> >and I went to see a dermatologist at Kaiser. I am using a topical steroid >on >> >my neck and on my back. >> >Flucinonide Cream USP, 0.05% on my back. >> >Desonide Cream 0.05% on my neck. >> >I am using this for 4 weeks twice a day. I made a deal with the doctor >that >> >he would refer me to a rheumatologist when I return. I am not sure if >this >> >is a good move but I am trying to find someone who has actually seen >morphea >> >before. All the doctors I have seen don’t seem familiar with it. >> >> >-Henk >> Henk, your best bet is a rheumatologist; even better would be one with >> at least some experience with lupus or scleroderma. >> My best wishes to you. >> Nell

Response:

This article has some treatments listed, but it’s dependent on a good diagnosis. http://www.emedicine.com/med/topic3132.htm#section~treatment Are you near a major university medical center? You’re more likely to find a doc there who is familiar with scleroderma. HENK VISSER wrote:

Are there any treatments available to improve the dark oval patches of dark skin I have on my neck and lower back? From my research I believe I have morphea but I am having an incredible time getting diagnosed. Thanks for any advice. -H – Hide quoted text — Show quoted text -HENK VISSER wrote: >Anyone out there?

Response:

Henk, When the results of the biopsies determined you did not have Morphea, were you given any diagnoses at all? I am a little confused. What other symptoms beside the dark patches do you have? The onset of my Localized SD was accompanied by extreme itchiness from the top of my head to the bottom of my feet, spots that varied in size from a quarter to the size of a plate, colors that went from yellows, reds, blues, to brown. Much of my skin turned hard from my neck to below my knees.Every piece of clothing irritated me except soft cotton turned inside out so the seams did not rub against me. I am not by any means trying to upset you as no two cases of SD are the same as I am sure you know. Before I go any further, let me put your mind at ease by telling you that after the first few years, my skin returned to 80% normal. All of the hardness is gone and I just have a few discolored areas that are not noticeable to anyone but me. I have read this happens in most cases of adult onset Localized SD. Whether it was the PUVA treatments or the disease running its course, I cannot say. I took treatments for a couple of years, twice a week for months at a time.(I happen to have wonderful medical coverage, thank goodness!) It has been seven years now since I was first diagnosed and most of my symptoms are gone. I never took any photos, I’m sorry to say. As for knowing what causes this fickle disease, even the experts do not know yet, but they are working on it, you can be sure. Prior to the onset of the disease, I had one major surgery six years earlier. Do you think there is a correlation? Yes, I would be more than happy to answer any of your emails. But know, I am in not an expert by any stretch of the imagination. I am just as confused about SD as most others that have it can attest to. Warm regards, Bobbie R.

Response:

On Tue, 11 May 2004 05:56:12 GMT, "HENK VISSER" wrote:

>The one on my lower back is very smooth and looks to be lower that the – Hide quoted text — Show quoted text ->normal skin. (looks to be sunken). I now have a hard lump in this dark area >and I went to see a dermatologist at Kaiser. I am using a topical steroid on >my neck and on my back. >Flucinonide Cream USP, 0.05% on my back. >Desonide Cream 0.05% on my neck. >I am using this for 4 weeks twice a day. I made a deal with the doctor that >he would refer me to a rheumatologist when I return. I am not sure if this >is a good move but I am trying to find someone who has actually seen morphea >before. All the doctors I have seen don’t seem familiar with it. >-Henk

Henk, your best bet is a rheumatologist; even better would be one with at least some experience with lupus or scleroderma. My best wishes to you. Nell

Response:

depression and brainfog

admin — Fri, 16 Jan 2004 00:00:00 +0000

Question:

Leslie, don’t despair I have been there too . Depression is part of the lupus and improves with treatment of the lupus Brain fog is also part of some forms of lupus and again clears with treatment. warmest wishes for a speedy recovery with treatment Erina

Response:

I think "brainfog" can be simply a result of our medications and extreme fatigue… Grace. – Hide quoted text — Show quoted text -Erina wrote: > Leslie, don’t despair I have been there too . Depression is part of the > lupus and improves with treatment of the lupus Brain fog is also part of > some forms of lupus and again clears with treatment. > warmest wishes for a speedy recovery with treatment > Erina

Response:

Hi Erina! That’s the first time I’ve heard someone use the term brainfog because of Lupus. A relief too! Sometimes I’ll just be driving along. I do have a destination, but it can take an awful long time to get there. I once forgot to go to the bank twice in the same day. I did manage to drive by it both times though. But yeah, it gets very depressing when you have so much fatigue. And fatigue just comes with the territory. Then the depression brings more fatigue…. And Leslie, where are you, hunny? I don’t see your name on any new posts. Hugs, Maggie

Response:

Hi all! Just pooping in to catch up on how you all are. We are going to attempt to brighten our world, by finishing the task of painting our ceilings a lovely sky blue – the dining room is the last to go and has been dragging everything down. (Of course when that is all done we get to finish the moldings!) So I am bracing myself for a trip to Home Depot – I know I needn’t explain that one… The depression has lifted somewhat, vitamin shot helped, but still having a serious battle with it. Doc says ‘hormones’ and I wanted to slap him!!!!! I have forced myself up and put on loud music and danced around and tried to get the blood flowing, but the back/neck spasms and stiffness have been really bad – as have the knee & hip, so it;s not pretty to watch! Erina, brainfog is exactly the term I use! It comes out of nowhere and is thick as peanut butter sometimes. The other day I was having a bad spell and the tears were literally spurting out – just like in the cartoons – I swear and it just cracked me up and shut me up! Have a great weekend everyone – HUGS Leslie wrote in message

news:25669-4008B6B1-186@storefull-3217.bay.webtv.net… – Hide quoted text — Show quoted text -> Hi Erina! > That’s the first time I’ve heard someone use the term brainfog because > of Lupus. A relief too! Sometimes I’ll just be driving along. I do > have a destination, but it can take an awful long time to get there. I > once forgot to go to the bank twice in the same day. I did manage to > drive by it both times though. > But yeah, it gets very depressing when you have so much fatigue. And > fatigue just comes with the territory. Then the depression brings more > fatigue…. > And Leslie, where are you, hunny? I don’t see your name on any new > posts. > Hugs, > Maggie

Response:

Hi Leslie, I am glad you are feeling better. Exercise doe help with a lot of things. I hope it stays that way for you. Warm wishes Erina "Chaos Hill" wrote in message

news:QeGdnaQmiMMmApTdRVn-vw@centurytel.net… – Hide quoted text — Show quoted text -> Hi all! > Just pooping in to catch up on how you all are. > We are going to attempt to brighten our world, by finishing the task of > painting our ceilings a lovely sky blue – the dining room is the last to go > and has been dragging everything down. (Of course when that is all done we > get to finish the moldings!) So I am bracing myself for a trip to Home > Depot – I know I needn’t explain that one… > The depression has lifted somewhat, vitamin shot helped, but still having a > serious battle with it. Doc says ‘hormones’ and I wanted to slap him!!!!! I > have forced myself up and put on loud music and danced around and tried to > get the blood flowing, but the back/neck spasms and stiffness have been > really bad – as have the knee & hip, so it;s not pretty to watch! > Erina, brainfog is exactly the term I use! It comes out of nowhere and is > thick as peanut butter sometimes. > The other day I was having a bad spell and the tears were literally spurting > out – just like in the cartoons – I swear and it just cracked me up and shut > me up! > Have a great weekend everyone – HUGS > Leslie > wrote in message > news:25669-4008B6B1-186@storefull-3217.bay.webtv.net… > > Hi Erina! > > That’s the first time I’ve heard someone use the term brainfog because > > of Lupus. A relief too! Sometimes I’ll just be driving along. I do > > have a destination, but it can take an awful long time to get there. I > > once forgot to go to the bank twice in the same day. I did manage to > > drive by it both times though. > > But yeah, it gets very depressing when you have so much fatigue. And > > fatigue just comes with the territory. Then the depression brings more > > fatigue…. > > And Leslie, where are you, hunny? I don’t see your name on any new > > posts. > > Hugs, > > Maggie

Response:

Sky blue ceilings – conjuring up images of an old Victorian. It’ll be great when it’s done. Just having a room done will be a big boost. Just knowing one project is finished will feel really good. Hormones? How about keeping a chart? If it is hormones it should cycle. If not it won’t follow any pattern. (Even if you are PM it should still cycle.) Then take that to the doc. Brainfog. I put a tool down and have no clue where it is. Forget finding keys. I just call my husband at work and ask him where they are. Thank goodness all body parts are attached. Can you see me calling him and asking where I put my left hand?? LOL Bev "Chaos Hill" wrote in message

Response:

In article , Beverley wrote [ >Brainfog. I put a tool down and have no clue where it is. Forget finding >keys. I just call my husband at work and ask him where they are.

There used to be a gadget for attaching to keys; you whistle at it and it whistles back. Worries the ### out of a dog! -- Andy [Chair, N E Lupus Group] See http://www.northeastlupus.org.uk for more!

Response:

How can I fix my trailer?

admin — Mon, 04 Aug 2003 00:00:00 +0000

Question:

I guess the poster forget to give us that info. It must have been copied from another post. – Hide quoted text — Show quoted text – But, if you P L E eeeeeeeeeee-sssssss S E, Sir (Miss), may I have sum ‘mor?"……"{excerpt: "OLIVER" – ’70s movie-musical-version: -i.e., Sum ‘ore AUTHENTICALLY SIGNED, posted messages? How else does 1 know to whom to respond(e)? jees’ guys, the OPUS.

Response:

But, if you P L E eeeeeeeeeee-sssssss S E, Sir (Miss), may I have sum ‘mor?"……"{excerpt: "OLIVER" – ’70s movie-musical-version: -i.e., Sum ‘ore AUTHENTICALLY SIGNED, posted messages? How else does 1 know to whom to respond(e)? jees’ guys, the OPUS.

Response:

- Hide quoted text — Show quoted text – —–BEGIN PGP SIGNED MESSAGE—– Hash: SHA1 did not write: I live in a cheap trailer in Dallas. Actually I live in a studio apartment with two cute little dogs who made a pile of poop that looked just like marty’s mamma. How could you possibly have room for yourself and two dogs in an efficiency apartment?

She keeps them in her ass with the hams. Lenore Levine

Response:

I live in a cheap trailer in Dallas. Actually I live in a studio apartment with two cute little dogs who made a pile of poop that looked just like my dinner.

You live with dog shit on the floor? I’m not surprised.

Response:

—–BEGIN PGP SIGNED MESSAGE—– Actually I live in a studio apartment with two cute little dogs who made a pile of poop that looked just like marty’s mamma.

You live in the Dallas area, claim to make $80k/yr, and all you can afford is a studio apartment? Funny how you were posting from a public library last year for 3 months because you could not afford to fix your computer. You’re also making payments on a 2000 Geo Prism, so it’s not like you have a fancy car. You’re certainly not buying your clothes from Neiman Marcus from the pictures that I have seen. What is wrong with this picture? You also claim to be getting laid too. LOL! NR http://www.pat-acceptance.org/kookrant.html http://www.pat-acceptance.org/kookrant2.html If I catch you busting into a mass and vilifying a church, the last thing you’ll hear in your entire life, will be the ratatatatat of an automatic. – –Steve Chaney to Mark Ira Kaufman Young Mr. Chaney, the man who has told me that he wants to murder me and sodomize women in my family, has said, repeatedly, that advocates for choice had vandalized churches. – –Mark Ira Kaufman she probably has to have her picture taken by satellite because no normal camera can fit all that whale blubber into one picture. – –Steve Chaney Excessively fat women look ugly. It is impractical to try and have sex when she’s 100lbs overweight and the weight is all fat – but most women ain’t that big. – –Steve Chaney You of course do know what a lot of Asian women prefer, right? Besides, after fucking a cute asian chick, experience tells me it isn’t all that except that she looks good on your arm. In bed it ain’t much at all. If the lights go out, any guy whose hormones are more fixed on performance than looks, is going to go to sleep right there and then. – –Steve Chaney Clarice and Allisson were well beyond a BMI of 25 in their pictures where they were called cows. – –Steve Chaney —–BEGIN PGP SIGNATURE—– Version: N/A iQA/AwUBPzB9vDL3IlvsWvnjEQLKiQCgpVGc6×6mwca0KvAZVWSl465EnZQAoNwZ epQ4pLTUV5XHnoG0hwWMTGu4 =Ohhr —–END PGP SIGNATURE—–

Response:

—–BEGIN PGP SIGNED MESSAGE—– Hash: SHA1 Hi: Don’t know about your trailer, but the LA Times had an article on a new treatment for Lupus. It’s a hormone called Prestara, which might replace other treatments with less side effects and danger. I’m sending a copy to my daughter. If you wish, I can send you a copy.

Please feel free to do so. You are respond to a forger who seems to think he can humiliate me like the little piss stream that he is. You know, shapeless and stinky. Post the like here and I will read the article. thanks LV Lady Veteran "I rode a tank and held a general’s rank when the blitzkrieg raged and the bodies stank…" – -Rolling Stones, Sympathy for the Devil Support bacteria – they’re the only culture some people have." -Stephen Wright —–BEGIN PGP SIGNATURE—– Version: PGP 8.0 – not licensed for commercial use: www.pgp.com iQA/AwUBPzBnZMTgtWhYq7BhEQI6/ACbBaBAs4N+VlUAwnS/Gj4NlwrbWVgAnjvD /42NnJfG6jE5FodFeXW5PAWG =v96q —–END PGP SIGNATURE—–

Response:

—–BEGIN PGP SIGNED MESSAGE—– Hash: SHA1 did not write: Hi all! Bobbi Sanchez here.

no, actually it is someone pretending to be a rich kid called marty taylor. We call him the maggot… I live in a cheap trailer in Dallas.

Actually I live in a studio apartment with two cute little dogs who made a pile of poop that looked just like marty’s mamma. I need some advice on a rather embarrassing problem. I weigh 400 pounds

No, that isn’t right either….this little turd can’t get anything right but that is not surprising for a third-rate canadian who is an embarrassment to his own country. and while I was standing, trying to stomp on some cockroaches, the floor of the RV gave way and I got stuck in the hole.

I haven’t seen a cockroach since marty posted his so-called picture in June of 2000. No, I don’t believe it was him either…. Anyway, after the police came and had to use a hydraulic excavator to get me out, I realized I was left with a crater in my trailer! How can I repair this? Thanks.

You have to excuse this walking brain fart. He is still high from crack and sex with mommie and isn’t thinking. The boy can’t help it-it’s his nature. LV Lady Veteran I have lupus. Check out http://www.lupus.org/

Yes, I have lupus. I am also feeling fine and anticipating throwing a party when the maggot becomes maggot food. Awww Marty! Can’t you do anything that is original. Everybody knows you are the one doing this….this is going to look real good to your future employer when you get that pilot job you always wanted and I show up with a subpoena and a copy of every post you ever sent along with all those delicious emails. You are such a wimp that you let a 47 year old woman scare you into pissing yourself. Poor bastard. LV Lady Veteran "I rode a tank and held a general’s rank when the blitzkrieg raged and the bodies stank…" – -Rolling Stones, Sympathy for the Devil Support bacteria – they’re the only culture some people have." -Stephen Wright —–BEGIN PGP SIGNATURE—– Version: PGP 8.0 – not licensed for commercial use: www.pgp.com iQA/AwUBPzBlSsTgtWhYq7BhEQKPgwCg7zqkzTiiaBZqQW1XbEo/xRf4+TAAoKYb HoLlZlSWp1sNG5k/kLcIvZX4 =GZuW —–END PGP SIGNATURE—–

Response:

Hi all! Bobbi Sanchez here. I live in a cheap trailer in Dallas. I need some advice on a rather embarrassing problem. I weigh 400 pounds and while I was standing, trying to stomp on some cockroaches, the floor of the RV gave way and I got stuck in the hole. Anyway, after the police came and had to use a hydraulic excavator to get me out, I realized I was left with a crater in my trailer! How can I repair this? Thanks.

Put a coffin at the bottom and you can save on the funeral expenses. Just make sure your dwarf has a little shovel to cover you before the boars get a whiff and start the feasting. Lenore Levine

Response:

arguing with anonymous strangers on the internet is a sucker’s game because they almost always turn out to be — or to be indistinguishable from — self-righteous sixteen-year-olds possessing infinite amounts of free time.

Did that fix your trailer? — http://www.geocities.com/snuhsite ——- / / /—– | (@) | | SnuH | | (O) | _ ___/ | / | || | /_ / // ____/ / / / _____,

Response:

Hi: Don’t know about your trailer, but the LA Times had an article on a new treatment for Lupus. It’s a hormone called Prestara, which might replace other treatments with less side effects and danger. I’m sending a copy to my daughter. If you wish, I can send you a copy. – Hide quoted text — Show quoted text – Hi all! Bobbi Sanchez here. I live in a cheap trailer in Dallas. I need some advice on a rather embarrassing problem. I weigh 400 pounds and while I was standing, trying to stomp on some cockroaches, the floor of the RV gave way and I got stuck in the hole. Anyway, after the police came and had to use a hydraulic excavator to get me out, I realized I was left with a crater in my trailer! How can I repair this? Thanks. LV Lady Veteran I have lupus. Check out http://www.lupus.org/

Response:

new scientist article on migraine theory

admin — Thu, 19 Jun 2003 00:00:00 +0000

Question:

There’s a long article in the current edition of New Scientist about another theory on the cause of migraine. "ALL IN THE MIND Could the agony of migraine be a particularly painful illusion? Helen Phillips explains why a controversial theory could shed light on this mysterious condition p.36" It’s not online, but as I get the mag, if anyone wants sight of it, I’ll happily scan & send as a .jpg Basically – the pain isn’t real as we migraineurs are mis-sensing the world. The bit that I disagree with is where somehow, even if a cause of migraine is our brain somehow mis-sensing the world, this makes the pain unreal. Cheers, helen s This is sent from a redundant email Mail sent to it is dumped My correct one can be gleaned from by getting rid of the overdependence on money and fame

Response:

I LOVE it!!! So it’s all in our heads!!! Funny I have known that for 30+ years.. yikes… rosie

Response:

I LOVE it!!! So it’s all in our heads!!! Funny I have known that for 30+ years..

Me too, I know it’s all in the head, however, I know the pain is real and not unreal! Cheers, helen s This is sent from a redundant email Mail sent to it is dumped My correct one can be gleaned from by getting rid of the overdependence on money and fame

Response:

This is the kind of crap comments that are the reason people keep getting them with no treatment. I think the medical field when they can’t solve a problem, it becomes all in your head. Or the typical "women’s emotional problems". CRAP! — Sue — UW Mom — Rabid Dawg Fan!

– Hide quoted text — Show quoted text – There’s a long article in the current edition of New Scientist about another theory on the cause of migraine. "ALL IN THE MIND Could the agony of migraine be a particularly painful illusion? Helen Phillips explains why a controversial theory could shed light on this mysterious condition p.36" It’s not online, but as I get the mag, if anyone wants sight of it, I’ll happily scan & send as a .jpg Basically – the pain isn’t real as we migraineurs are mis-sensing the world. The bit that I disagree with is where somehow, even if a cause of migraine is our brain somehow mis-sensing the world, this makes the pain unreal. Cheers, helen s This is sent from a redundant email Mail sent to it is dumped My correct one can be gleaned from by getting rid of the overdependence on money and fame

Response:

Can’t you just attach it to a post, so we could all get it? Thanks.

As far as I know, attachments to a posting here are verboten. And certainly my newsgroup posting facility doesn’t allow it anyhow. Cheers, helen s This is sent from a redundant email Mail sent to it is dumped My correct one can be gleaned from by getting rid of the overdependence on money and fame

Response:

It’s the explanation from so-called doctors and scientists of those who they cannot cure. meissners.org says… – Hide quoted text — Show quoted text – There’s a long article in the current edition of New Scientist about another theory on the cause of migraine. "ALL IN THE MIND Could the agony of migraine be a particularly painful illusion? Helen Phillips explains why a controversial theory could shed light on this mysterious condition p.36" It’s not online, but as I get the mag, if anyone wants sight of it, I’ll happily scan & send as a .jpg Basically – the pain isn’t real as we migraineurs are mis-sensing the world. The bit that I disagree with is where somehow, even if a cause of migraine is our brain somehow mis-sensing the world, this makes the pain unreal. Isn’t the traditional thing to do is wish we could use mister baseball bat to plonk the individual saying such things and when they complain, say the pain is just in their heads.

– R&T

Response:

- Hide quoted text — Show quoted text – There’s a long article in the current edition of New Scientist about another theory on the cause of migraine. "ALL IN THE MIND Could the agony of migraine be a particularly painful illusion? Helen Phillips explains why a controversial theory could shed light on this mysterious condition p.36" It’s not online, but as I get the mag, if anyone wants sight of it, I’ll happily scan & send as a .jpg Basically – the pain isn’t real as we migraineurs are mis-sensing the world. The bit that I disagree with is where somehow, even if a cause of migraine is our brain somehow mis-sensing the world, this makes the pain unreal. Isn’t the traditional thing to do is wish we could use mister baseball bat to plonk the individual saying such things and when they complain, say the pain is just in their heads.

"Nothing is real like what your feel!"—– I’ve taken this from an unpublished song written by a friend of mine (Bill Strickland for credit purposes) in the 60s, and I’m wondering where the "mind" is located (of course). After all, if "some things all in it, IT must BE somewhere (or, in some other universe). Helen probably works as a mental health insurance consultant in her day job. Doesn’t she know that all sensory organs are physical, and the brain "perceives" pain, but "receives" physical nerve impulses, not mental impulses. Once you view the mind as the subjective brain, then migraines and migraine research make sense (pardon the pun). As Feigl said, they’re like two sides of a coin. They are completely different, but totally dependent on each other’s existence. He called this the "double aspect" theory of the mind/body problem. I once worked for a year directly under Prof. Roger Sperry, who carried it one step further, simply said they’re was no difference, and this came to be called the "identitist" theory. He was famous as the first one to do split/hemiphere experiments, and was the first to split the brains of rhesus monkeys. I believe it may have been tried earlier by Ron Meyers, MD on a human with status epilepticus, in order to try and confine the seizure to one hemisphere. Sperry was a zoologist from the U. of Chicago (not a psychologist as was widely thought), and won the Nobel, not for his work with split brains, but an extremely important (and utterly simple) experiment which began the elucidating of how nerves, as they develop, in utero, find their targets. IOW, how does the nerve know where to grow towards? There was a famous Scientific American article called "The Growth of Nerve Circuits" written by Sperry. Matt- I’m not talking about the cervical spinal nerves re: clusters. To me, cranial n. 3,7,9 and 10 comprise the cranial parasympathetic outflow. I’m talking about a 7th n. gone astray as a possible cluster mechanism, and, of course, the pain is felt via the occipiatal branch of the trigeminal n. If you stimulate the SPG of a cat you get ipsilateral tearing and nasal congestion, IIRC. Post SPG (going distally), there is EXTENSIVE innvervation from the chin to the forehead, and even an occipital branch, possibly of blood vessels. That’s its only synapse. As there are hypothalamic fibres that go dirctly to the SPG, the circadian aspect if bolstered. AND, As Imitrex has putative action the 5th n., than the efficacy of Imitrex (as a 5th n. block fo to spaek), can explain this efficacy. Much of this anatomy is being worked on as we jabbar. I hope none were upset by my combining of threads, but they were all pretty old. Sorry for rabblin, Jack Ginnie- You REALLY ask good questions! For that, you have my respect. And, you’re always with me. But, to understand the current I do not get involved in the ego battles within the group, answering My reference to IEEE journals was both because they published "volumes" on this topic in their biomedical engineering jopurnal. The point I was trying to make is that the questions you ask require some esoteric knowledge (and, it’s not easy either.), but, AGAIN, neuroscientists are STRICT scientists, IMHO, many coming from a background similar to mine, and, therefore, use stastictical models developed by psychologists and mathematicians, in order to do experiments scientifically. The cutting edge of research assumes the ability of an average person with a background in THAT field to understand, and /or to be be able to trace down the original source. I can pretty much tell you that in the common area of migraine, IF YOU ARE WILLING TO DISREGARD COMMON PSYCHOLOGICAL CAUSES, Medline is all you need. Try searching for the work of Goadby and Hardebo. Unfourtunately, the problem, is that you will only get the abstract. BUT, if you are really serious, you’ll set up an account with the medical regional library closest to you, and order the full article for a snmall fee. It can take a year for me really to "digest" some of their work. I might also suggest that you consider altering my tape from BSC for aboutg $20-I make NOTHING. This is my 2 hour attempt to explain current migraing theory—as of a few years ago, to new physicians, but they were almost all health profesionsals in the audience. I KNOW of a wonderful source on migraine theory. I based much of my course on their beautiful work. It fo happens, the Merck put of for docs a COUSR on migraie, editied by Goadsby.

Response:

Ginnie- I met "ordering", not "altering", and I need to use the spellcheck, sorry, Jack

Response:

Can’t you just attach it to a post, so we could all get it? Thanks.

Response:

Isn’t the traditional thing to do is wish we could use mister baseball bat to plonk the individual saying such things and when they complain, say the pain is just in their heads. — Michael Meissner http://www.the-meissners.org

Response:

Well, if you are a DAWG then I am SURE it is in your head

Response:

Guess I need to introduce myself. I met Matt on the sci.med.transcription newsgroup and he mentioned this group (Hi Matt, thanks). I work at home and have had migraines for years. — Sue — UW Mom — Rabid Dawg Fan!

Response:

The value in any theory is if it can be used to provide an effective treatment. Assuming this is true, then what can we do to change how our brain perceives pain, so we don’t end up in whithering agony? If it can answer this question for even a few of us, then great! Otherwise, it’s just useless and can be safely discarded. The notion that migraines are psychodynamic or just imaginary is clearly misguided. BTW, anti-psychotics have been demonstrated to change the perception of pain because they alter the dopamine receptors. Erik – Hide quoted text — Show quoted text – There’s a long article in the current edition of New Scientist about another theory on the cause of migraine. "ALL IN THE MIND Could the agony of migraine be a particularly painful illusion? Helen Phillips explains why a controversial theory could shed light on this mysterious condition p.36" It’s not online, but as I get the mag, if anyone wants sight of it, I’ll happily scan & send as a .jpg Basically – the pain isn’t real as we migraineurs are mis-sensing the world. The bit that I disagree with is where somehow, even if a cause of migraine is our brain somehow mis-sensing the world, this makes the pain unreal. Cheers, helen s This is sent from a redundant email Mail sent to it is dumped My correct one can be gleaned from by getting rid of the overdependence on money and fame

Response:

Oh, no a coug! On the medical transcription site we have a DUCK! Can you imagine how stressful that is? BTW, my best friend and courier for my work is a Cougar. We used to have apple cup rallies at our house ever Wednesday before the game (my son was in the Husky Band and brought down band members) Front table was decorated half husky/half coug with tons of coug/husky jokes all over the house! It was always a blast (we have a fun rivalry). Whenever my son would answer the phone she would start the WAZZU fight song! We do have fun! Looks like your ex-coach and ours are giving our state a pretty bad rep! My friend has lupus and thus has a placard to hand in the window. She also has coug plates – I asked her why she needed the plaque when she had the plates!

Response:

TOP POST I liked the old science better. – Hide quoted text — Show quoted text – There’s a long article in the current edition of New Scientist about another theory on the cause of migraine. "ALL IN THE MIND Could the agony of migraine be a particularly painful illusion? Helen Phillips explains why a controversial theory could shed light on this mysterious condition p.36" It’s not online, but as I get the mag, if anyone wants sight of it, I’ll happily scan & send as a .jpg Basically – the pain isn’t real as we migraineurs are mis-sensing the world. The bit that I disagree with is where somehow, even if a cause of migraine is our brain somehow mis-sensing the world, this makes the pain unreal. Cheers, helen s This is sent from a redundant email Mail sent to it is dumped My correct one can be gleaned from by getting rid of the overdependence on money and fame

Response:

Sorry yall if bad drs visit was inappropriate

admin — Wed, 16 Apr 2003 00:00:00 +0000

Question:

Can someone send me more info on group and govn’t funding?

Response:

Nicole Clifton wrote: > Can someone send me more info on group and govn’t funding?

Nicole, What I meant is our Canadian healthcare is government funded. We pay for it through our taxes. This newsgroup is not funded by anyone. Usenet is free. J

Response:

On 16 Apr 2003 10:12:05 -0700, nrclif…@aol.com (Nicole Clifton) wrote: >Can someone send me more info on group and govn’t funding?

as I imagine you know by now – there was nothing inappropriate in your post at all.. Just a miscommunication. As far as switching docs. I think it’s worth doing some research on docs in your area (perhaps contact your nearest Lupus organization or support group) and switching docs. The stress of the switch will likely be less damaging in the long run than feeling rotten when you get mistreated by your doc. OR – the other thing is to communicate with this current doc about your concerns first. if he is unresponsive to your concerns – then seek a new doc. I don’t know if writing a letter to address the issue would be better than calling and discussing it. I doubt you’ll have much luck getting any $ back – but it would definitely communicate to the office that you didn’t feel you were properly cared for. sending good vibes your way.. kcat

Response:

Nicole, Even though it is a major pain, (no pun intended), you deserve proper treatment, and unfortunately that sometimes means having to shop around. Don’t be under the misconcept that only a rheumotologist can treat you effectively. You need to find someone that treats Lupus. In my case, the Internist I see is worth 5 rhuemys put together. He is wonderful. I have copies of my labs mailed to my home the same day the doctor gets them. This is a standard courtesy. All I do is address an envelope when I am checking out each visit. Yes, sometimes I am there awhile, as he runs late. But that is because he takes time with every patient. I never leave without all my questions answered, and a (hug). I wish everyone could be so lucky. The bad news is, he is not on my insurance plan’s ‘prefered’ list. Therefore i have a major deductible, and a 40% copayment. But….. it’s worth it. I will skimp on other non-essentials – not my health. Best of luck to you. – Hide quoted text — Show quoted text -On Wed, 16 Apr 2003 13:31:10 -0400, J wrote: >Nicole Clifton wrote: >> Can someone send me more info on group and govn’t funding? >Nicole, >What I meant is our Canadian healthcare is government funded. We pay >for it through our taxes. >This newsgroup is not funded by anyone. Usenet is free. >J

Response:

Thank you all I got a really nice letter from a member of the group. I think what she suggested might be the issue is that we have outgrown one another – my doctor and I. I did not receive a call from him as his nurse stated and got disconnected while waiting for the second appt to be scheduled. I will talk to lupus group here in town and see who the prefer. I also agree my health is essential and I just feel I cannot to receive less then decent communication between my doctor and I. So, the switch is on. Frankly, I guess I am kinda a chicken because the thought of trying to sit and talk to him now that I have complained really gives me butterflies. Sincerely, Nicole in Austin – Hide quoted text — Show quoted text -KC wrote in message … > On 16 Apr 2003 10:12:05 -0700, nrclif…@aol.com (Nicole Clifton) > wrote: > >Can someone send me more info on group and govn’t funding? > as I imagine you know by now – there was nothing inappropriate in your > post at all.. Just a miscommunication. > As far as switching docs. I think it’s worth doing some research on > docs in your area (perhaps contact your nearest Lupus organization or > support group) and switching docs. The stress of the switch will > likely be less damaging in the long run than feeling rotten when you > get mistreated by your doc. > OR – the other thing is to communicate with this current doc about > your concerns first. if he is unresponsive to your concerns – then > seek a new doc. I don’t know if writing a letter to address the issue > would be better than calling and discussing it. > I doubt you’ll have much luck getting any $ back – but it would > definitely communicate to the office that you didn’t feel you were > properly cared for. > sending good vibes your way.. > kcat

Response:

hanging with thyroiditis

admin — Thu, 27 Feb 2003 00:00:00 +0000

Question:

Aiee, Mary: Sorry to hear you are having such a hard time. Hypothyroidism (Hashimoto’s Thyroiditis) was my first autoimmune issue to appear — I guess it’s now considered part of my Lupus. I think it was just discovered through routine blood tests… I guess it made me a bit sluggish and stiff, especially in the mornings, but supposedly my blood results are now normalized by my taking synthroid. In any case, now I have plenty of reasons for feeling stiff and sluggish! (My doctors do a blood test every few months to make sure I’m on the right dose of synthroid…) Grace.

Response:

Grace, I had the same situation you discribed. I was in total misery, no energy (what I call "human rug" syndrome). I went to the rheumatologist I have just returned to after an 8 year hiatus. He was the first one to diagnose me. All my tests were normal with a few thyroid peroxidase antibodies floating around. But he just looked at me… I don’t know what he saw… I didn’t have brittle hair or slow heart rate (tend to be tachy). But this doc, just looked at me and said, "Oh I see this all the time. Women go ten years or so like this before they ever get treatment." He just stuck me on levothyroxine, and three weeks later, I was *rollerblading!* Now, just as you say, I have a whole slew of syndromes that follow me around like pesky mosquitoes. Unlike mosquitoes, they do bother me more in the morning than in the twilight hours. Best regards, Mair "Grace Casselman" wrote in message

news:3E5E6D48.565056A1@casselman.net… – Hide quoted text — Show quoted text -> Aiee, Mary: > Sorry to hear you are having such a hard time. > Hypothyroidism (Hashimoto’s Thyroiditis) was my first autoimmune issue to > appear — I guess it’s now considered part of my Lupus. I think it was just > discovered through routine blood tests… I guess it made me a bit sluggish and > stiff, especially in the mornings, but supposedly my blood results are now > normalized by my taking synthroid. > In any case, now I have plenty of reasons for feeling stiff and sluggish! (My > doctors do a blood test every few months to make sure I’m on the right dose of > synthroid…) > Grace.

Response:

Hi, boy this thyroiditis is something you want to avoid if possible. The up side is that I do get about 30 minutes of energy before I go into insane nervousness… then I take a downer, which tends to take away my energy. I do a lot of reading… the last three novels I have read, just happen to be about German Catholics, which is what I am. Kind of an interesting coincidence. Here’s something kinda funny. I live in a duplex; my landlord lives in the other half. His style has been, if he hears me hammering, he will call me up to try to make sure I am not tearing the place down. So now I just wait until he is out to do my hammering. I got a coat rack mounted by the door, and I hung my *huge* mirror which I keep in the living room for doing Tai Chi. I am starting the T’ai Chi again, very slowly, just to keep my joints limber at this point. It is back to rest for me now. Good day to everyone! Mair — stin…@earthlink.net http://radio.weblogs.com/0114986/

Response:

Fever (Sorry long)

admin — Thu, 10 Oct 2002 00:00:00 +0000

Question:

Hi Shelagh, Cindy has been in a flare for months now. She is already on honking big doses of pred. They have tried IV gamma and some other things too, but just can’t seem to get a handle on it. She is seeing another doctor hoping that he might have a fresh approach. Thought you might not know some of the details. BJ-Sk. Canada "Shelagh" wrote in message

news:xqop9.3453$Sk6.251591@news1.telusplanet.net… – Hide quoted text — Show quoted text -> "Ward" wrote in message: > > The pain is > awful especially in my knees some of the worst pain I have ever had I > sit and cry feels like someone has me in a vise grip. > All this last from bout 4 pm to 6 am the next day. | > >The neurologist I have been seeing wanted me to start Methotroxate > > Hi Cindy > Your knee pains and spinal related headaches and a mystery fever all > sound like what I had during part of last summer, > _it was a nightly occurence from 2am to 6am!_ > until I couldn’t take it anymore and I finally landed in emerg. with a > high fever and was immediately referred to the rheumy who knew it was a > sle flare. > The end result was my being started on a dosage of 200mg chloroquin (an > antimalarial) each day and continued on pred. (I was taking 5 mg./daily > and at the time was upped temporarily to 20mg/daily _till the chloroquin > kicked in_) and it worked within a month of treatment and I had no more > bad nights with knees or fever or headaches. > I am still being maintained on both 5mg of pred and the chloroquin > indefinitely. > I wish you luck with your quest for answers! > from Shelagh > Co-ordinator Of > Valley-Lupus – Invisible in Plain Sight > http://www3.telus.net/valleylupus > Subgroup of BC Lupus Society > http://www.bclupus.org/ > and Lupus Canada > http://www.lupuscanada.org/

Response:

"BJ" wrote in message Thought you might not know

some of the | details. Hi BJ, thanks you are right on! I had no idea she has had this ongoing for so long! Maybe the methotrexate will actually be her answer after all that time then…. let’s hope and pray! Take care of yourself….. and how is you COPD going? Any new changes for the better? Hopefully you are feeling somewhat better at least knowing you will be getting some answers ‘eventually’(re the mayo docs), instead of the agony of ‘not knowing what’s what or where to turn’. Wishing you all the best of good health (in as much as is possible right now!) — from Shelagh Co-ordinator Of Valley-Lupus – Invisible in Plain Sight http://www3.telus.net/valleylupus Subgroup of BC Lupus Society http://www.bclupus.org/ and Lupus Canada http://www.lupuscanada.org/

Response:

Hi Shelagh, Yes, I am sure there is an answer out there for Cindy. She has been so brave through all this. She has developed Crohn’s as well, even on all the suppressing drugs. I am doing fine. I just take things as they come. I have learned not to worry much. I don’t even think about the COPD. It isn’t a problem for me right now. Wouldn’t have known I had it, if they hadn’t seen it on xray. I am still waiting for word on the Mayo consult. My blood problems are the biggest thing really. We just muddle through from day to day. I guess things aren’t so bad, as long as there is another day. What are you doing for Thanksgiving? BJ-Sk. Canada "Shelagh" wrote in message

news:P%Gp9.4207$Sk6.413576@news1.telusplanet.net… – Hide quoted text — Show quoted text -> "BJ" wrote in message Thought you might not know > some of the > | details. > > Hi BJ, thanks you are right on! I had no idea she has had this ongoing > for so long! Maybe the methotrexate will actually be her answer after > all that time then…. let’s hope and pray! > Take care of yourself….. and how is you COPD going? > Any new changes for the better? > Hopefully you are feeling somewhat better at least knowing you will be > getting some answers ‘eventually’(re the mayo docs), instead of the > agony of ‘not knowing what’s what or where to turn’. > Wishing you all the best of good health (in as much as is possible right > now!) > — > from Shelagh > Co-ordinator Of > Valley-Lupus – Invisible in Plain Sight > http://www3.telus.net/valleylupus > Subgroup of BC Lupus Society > http://www.bclupus.org/ > and Lupus Canada > http://www.lupuscanada.org/

Response:

"BJ" wrote in message guess things aren’t so bad,

as long as there is another day. What | are you doing for Thanksgiving? Hi BJ: Glad to hear your copd isn’t at all disabling and that you are still on a positive note about everything. … hmm Thanksgiving? This year it comes on my twin sisters’ bday and my 30th anniv. so we are all (my mom and 5 of my 6 sisters) getting together for a ‘luncheon/goodbye visit(for us)/bday visit/thanksgiving/and early bday wishes for moi!’ Looking forward to seeing them all on the Monday and also tomorrow, Saturday I am seeing my mom and older sister for lunch and a visit, just the 3 of us which should be nice. I missed my sister’s bday 2 weeks ago so have a gift for her and haven’t seen my mom for that long as well …. so it is going to be a family weekend! What about YOU? ((Hugs and Happy Thanksgiving to you and your ‘family’)) — from Shelagh Co-ordinator Of Valley-Lupus – Invisible in Plain Sight http://www3.telus.net/valleylupus Subgroup of BC Lupus Society http://www.bclupus.org/ and Lupus Canada http://www.lupuscanada.org/

Response:

Hi Shelagh, Happy birthday/ Anniversary wishes all around. It sounds like a wonderful family weekend. So much to be thankful for, isn’t there? We are going to the Hotel Saskatchewan on Sunday for their Thanksgiving buffet. My daughter is driving in from Balcarres to meet us there. I am excited. I haven’t seen her for a while. I plan to pig out. I will report on a CGT/ food thread. I am sure that all will want to hurl when they read how much I scarfed down. People alway wonder how a skinny chick like me can plug down so much food. I say the secret is elastic waist pants. They expand with my tummy, thus allowing for more food. It should be fun. Happy Thanksgiving to you and yours. BJ-Sk. Canada "Shelagh" wrote in message

news:p3Np9.9485$wU3.468410@news0.telusplanet.net… – Hide quoted text — Show quoted text -> "BJ" wrote in message guess things aren’t so bad, > as long as there is another day. What > | are you doing for Thanksgiving? > > Hi BJ: > Glad to hear your copd isn’t at all disabling and that you are still on > a positive note about everything. > … hmm Thanksgiving? This year it comes on my twin sisters’ bday and my > 30th anniv. so we are all (my mom and 5 of my 6 sisters) getting > together for a > ‘luncheon/goodbye visit(for us)/bday visit/thanksgiving/and early bday > wishes for moi!’ > Looking forward to seeing them all on the Monday and also tomorrow, > Saturday I am seeing my mom and older sister for lunch and a visit, just > the 3 of us which should be nice. I missed my sister’s bday 2 weeks ago > so have a gift for her and haven’t seen my mom for that long as well > …. so it is going to be a family weekend! > What about YOU? > ((Hugs and Happy Thanksgiving to you and your ‘family’)) > — > from Shelagh > Co-ordinator Of > Valley-Lupus – Invisible in Plain Sight > http://www3.telus.net/valleylupus > Subgroup of BC Lupus Society > http://www.bclupus.org/ > and Lupus Canada > http://www.lupuscanada.org/

Response:

"Ward" wrote in message: > The pain is

awful especially in my knees some of the worst pain I have ever had I sit and cry feels like someone has me in a vise grip. All this last from bout 4 pm to 6 am the next day. | >The neurologist I have been seeing wanted me to start Methotroxate

Hi Cindy Your knee pains and spinal related headaches and a mystery fever all sound like what I had during part of last summer, _it was a nightly occurence from 2am to 6am!_ until I couldn’t take it anymore and I finally landed in emerg. with a high fever and was immediately referred to the rheumy who knew it was a sle flare. The end result was my being started on a dosage of 200mg chloroquin (an antimalarial) each day and continued on pred. (I was taking 5 mg./daily and at the time was upped temporarily to 20mg/daily _till the chloroquin kicked in_) and it worked within a month of treatment and I had no more bad nights with knees or fever or headaches. I am still being maintained on both 5mg of pred and the chloroquin indefinitely. I wish you luck with your quest for answers! from Shelagh Co-ordinator Of Valley-Lupus – Invisible in Plain Sight http://www3.telus.net/valleylupus Subgroup of BC Lupus Society http://www.bclupus.org/ and Lupus Canada http://www.lupuscanada.org/

Response:

Hi Everyone There is no way I can catch up on posts right now. I just wanted to say hi. I have been fighting these fevers, they have gotten more frequent and run higher monday I had 104. It is more like a mechanism malfunction than an actual fever. I have had a ton of blood work no infections. Nothing breaks the fever except vicodin sometimes and sometimes extra prednisone. They start with joint pain in my toes yup sounds silly I know then works up to my knees , elbows, fingers then neck shoulders. The pain is awful especially in my knees some of the worst pain I have ever had I sit and cry feels like someone has me in a vise grip. All this last from bout 4 pm to 6 am the next day. Then I am all clammy and have sweats off and on all day. I get fever blisters and little bloody noses the next day. This all started in the first week of July and always the day of my treatment. So seemed obvious was a side effect. Well my neurologist (the dr doing treatment Gamma Globulin) says nope not the treatment as we changed it to every 2 weeks and I still had the fever on the same day I would have treatment. She said must be Lupus doing it. So don’t talk to her bout it anymore yup she said that. So I said I don’t want to do treatment anymore till I get this sorted out. At the same time another patient having the same problem developed a lung embolism and 3 weeks later is still in the hospital after a week in ICU and emergency surgery for a bleed in one lung. We both have the same problem with our feet and faces going numb she the dr blamed my problem on steroids and diabetes. Told me to deal with it. I have also had to start insulin twice a day 15 units am and pm. So my endocrinologist is sending me to the guy at Baylor I am still waiting for my appointment. And we will see what some one with a completely objective opinion has to say. The neurologist I have been seeing wanted me to start Methotroxate as I had said in an earlier post but I just don’t want to right now with the holidays coming. My daughter has had bronchitis 2 times in a month and trying to get her started on braces. I am having my other cataract off the 15th so my plate is full with out starting MTX I do want to try it though it is the only med for Lupus I have not tried and my last ANA were very high so could be that doing the fevers just seems weird that until recently they always were on wed. the day of treatment. This week I had Monday and wed. Last week had tuesday wednesday and thursday. Well sorry to be so long winded if anyone has had this or heard of it I appreciate any info I have not looked online hardly at all I just hurt so much my spine from the meningitis is a big problem. I thank you for that info as ibuprofen was one of the things I have been taking for fever!! You are all in my thoughts and I will try to catch up here please feel free to email me anytime. Take care Cindy W.

Response:

Hi Cindy, I have been worried about you, and am glad you posted with an update. I am sorry to hear that things are so bad. I hope you get in to see the new doctor soon. I was interested in your comment about a mechanism malfunction. You may well be right about that. Perhaps your autonomic nervous system is being affected by your lupus. I got the pain and sweating that you describe. It also stepped up my urine production, heart rate, and bowel function. Do you have any problems in those areas? I got the most incredible burning throughout my body. I lived with ice packs on my head and neck. My neuro thought that it was autonomic The only thing that helped me at all was being on IV which was running full tilt. It took about five days to work. Is there any way that could be tried for you? I was getting dehydrated, so I got admitted for that reason. I wish I had more to offer in the way of help. Just know that I am thinking about you, and pray for you all of the time. There is a solution for you. The new doc may well find it. BJ-Sk. Canada "Ward" wrote in message

news:3DA5D078.25B9201C@earthlink.net… – Hide quoted text — Show quoted text -> Hi Everyone > There is no way I can catch up on posts right now. I just wanted to say > hi. I have been fighting these fevers, they have gotten more frequent > and run higher monday I had 104. It is more like a mechanism malfunction > than an actual fever. I have had a ton of blood work no infections. > Nothing breaks the fever except vicodin sometimes and sometimes extra > prednisone. > They start with joint pain in my toes yup sounds silly I know then > works up to my knees , elbows, fingers then neck shoulders. The pain is > awful especially in my knees some of the worst pain I have ever had I > sit and cry feels like someone has me in a vise grip. > All this last from bout 4 pm to 6 am the next day. Then I am all clammy > and have sweats off and on all day. I get fever blisters and little > bloody noses the next day. > This all started in the first week of July and always the day of my > treatment. So seemed obvious was a side effect. Well my neurologist > (the dr doing treatment Gamma Globulin) says nope not the treatment as > we changed it to every 2 weeks and I still had the fever on the same day > I would have treatment. She said must be Lupus doing it. So don’t talk > to her bout it anymore yup she said that. So I said I don’t want to do > treatment anymore till I get this sorted out. At the same time another > patient having the same problem developed a lung embolism and 3 weeks > later is still in the hospital after a week in ICU and emergency surgery > for a bleed in one lung. We both have the same problem with our feet and > faces going numb she the dr blamed my problem on steroids and diabetes. > Told me to deal with it. > I have also had to start insulin twice a day 15 units am and pm. > So my endocrinologist is sending me to the guy at Baylor I am still > waiting for my appointment. > And we will see what some one with a completely objective opinion has to > say. The neurologist I have been seeing wanted me to start Methotroxate > as I had said in an earlier post but I just don’t want to right now with > the holidays coming. > My daughter has had bronchitis 2 times in a month and trying to get her > started on braces. I am having my other cataract off the 15th so my > plate is full with out starting MTX I do want to try it though it is the > only med for Lupus I have not tried and my last ANA were very high so > could be that doing the fevers just seems weird that until recently they > always were on wed. the day of treatment. This week I had Monday and > wed. Last week had tuesday wednesday and thursday. > Well sorry to be so long winded if anyone has had this or heard of it I > appreciate any info I have not looked online hardly at all I just hurt > so much my spine from the meningitis is a big problem. I thank you for > that info as ibuprofen was one of the things I have been taking for > fever!! > You are all in my thoughts and I will try to catch up here please feel > free to email me anytime. > Take care > Cindy W.