Guest guest Posted October 3, 1998 Report Share Posted October 3, 1998 Hi Everyone, I have been really feeling supreme fatigue with this flare, especially this week. I have had experience with a higher dose of folic acid clearing up the mouth sores. Check with your doc - I have heard of people taking up to 5 folic acid mg a day in some cases on the newsgroup alt.support.arthritis. I believe you can look at their archives on this. About alopecia. For me, the methotrexate actually stopped it from happening. It did take quite a high dose though. Now the hair is slowly growing back in. I had the " skiband " pattern of alopecia. It was awful. I am so grateful that it did not all fall out though. Regarding scalp psoriasis, there are several steroid liquids - all prescription- and of course T-Gel Shampoo is excellent, as is T-Sal if you suspect fungal involvement as well. I use antifungal under the arms underneath the cortisone cream as well as in the groin area. In all other areas, I use Bactroban under the cortisone. My doc sometimes puts me on oral antibiotics or antifungals too depending on how bad things get. Hope this helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 1999 Report Share Posted April 28, 1999 Jo I'm glad you posted today - I can relate to much that you wrote and want you to know that it did not feel 'down', but simply honest sharing. Perhaps this was true for me because I too am having a little harder time than usual right now.....unfortunately (or fortunately) I don't have the time right now to detail it all - but did want to start wth just saying hi and glad you are here. One question, though - where in No. Cal. are you - I'm just a little south of S.F. Take good care..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 1999 Report Share Posted July 14, 1999 in responce to what somebody asked for ideas for bath bombs...well when i was recently in canada i bought some from a store called lush. that was before i started making my own. anyway, one of my favorites from them is this one that has little pieces of cocoa butter in it. when the bath bomb fizzes, the cocoa butter is let out, melts and leaves the oil on top of the water. anytime you lift part of your body out of the water, it catches the oil and it stays there. makes your skin soft all day. anway, i am guessing, i haven't tried to make this since i haven't bought any cocoa butter yet, but i am guessing, just use a regular bath bomb recipe, don't color and don't scent, just add little pieces of cocoa butter and then form. kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 1999 Report Share Posted December 21, 1999 Hello All After about a week of no mail - I realized that I had somehow gotten unsubscribed. No biggie - these things happen in the big world of cyberspace. When I re-subscribed, I saw that we had moved to ONEList. I am o several lists with them, and find their formatting very easy for a techno newbie like myself. Kudos to ! Have a happy and joyous holiday season one and all. tracey http://community.webtv.net/omirus/HERBFULHINTS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 1999 Report Share Posted December 22, 1999 Thanks for taking the time and moving us all! My tip?.... You can never please everyone... so weather we're tropicana, one-list, ecosoft, you reply to the list or the sender.... we have a grate list here and the information I've leeched over the past year has been wonderful. Thanks everyone! onelist wrote: > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 Hi - Ive been on this list exactly one fday and already want off. How do you do the home page thing? thx. Chelle2266@aol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 Hi - Ive been on this list exactly one fday and already want off. How do you do the home page thing? thx. Chelle2266@aol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 I don't get it. Why do folks feel the need to announce that they want to get off the list. Why not just quietly go away! No one here is trying to annoy any one, but I do believe we need each other. I have only been on list for 3 days and already volume of mail is down by half. and I am sure it will quiet down even more, too bad. yours in good health, Donna G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 I don't get it. Why do folks feel the need to announce that they want to get off the list. Why not just quietly go away! No one here is trying to annoy any one, but I do believe we need each other. I have only been on list for 3 days and already volume of mail is down by half. and I am sure it will quiet down even more, too bad. yours in good health, Donna G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 I used o get flooded with emails on lists like this but found by going to te Onelist homepage I can receive it by daily digest-which takes 25 emails at a time and bundles them together. I only receive 1-4 of these a day, instead of the 25-100 or more individual emails I used to get. Maybe someare unaware of this feature, but i can easily handle the 1-4 digests day (average around 2) " ...I dream then ask why not " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 I used o get flooded with emails on lists like this but found by going to te Onelist homepage I can receive it by daily digest-which takes 25 emails at a time and bundles them together. I only receive 1-4 of these a day, instead of the 25-100 or more individual emails I used to get. Maybe someare unaware of this feature, but i can easily handle the 1-4 digests day (average around 2) " ...I dream then ask why not " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 your right donna, there's a lotta spoiled, impatient, immature people out there with hep c. i hope they've got the money/resources to go it alone.i just hope they go away quietley, this must be their omly soapbox .get a life and go away people. leave us alone dammit. good luck to you donna. jw Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 your right donna, there's a lotta spoiled, impatient, immature people out there with hep c. i hope they've got the money/resources to go it alone.i just hope they go away quietley, this must be their omly soapbox .get a life and go away people. leave us alone dammit. good luck to you donna. jw Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 Hey, hey - JW. Hold off on your quick assessments. " Spoiled, immature etc " . This person merely wanted off the list as he/she was receiving way too much e-mail. Apparently, they weren't aware of how to do this. Yes, we need advice and information. Some people would rather visit a website to glean their info. Anyway, we all get cranky (ask my family and friends - lol). It's part of the disease, as well as the tx., unfortunately. Be well. Peace, Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 Dear Donna, I believe it's because they don't know the proper way to unsubscribe. Personally, the more that stay the merrier. Their loss not ours. Love, Bren Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 your right jane, maybe i was quick to judge. they should still use a lil more couth and not demean any sight somebody worked long and hard on to help us with. be well,jw Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 Scroll down and look it will tell you --- Chelle2266@... wrote: > Hi - Ive been on this list exactly one fday and > already want off. How do you > do the home page thing? thx. Chelle2266@aol > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2000 Report Share Posted January 15, 2000 And.....some people, me included, don't have the ENERGY to read thru tons of email. It's all we can do to sit down once in awhile to gain a little more insight into this disease and try and do the best we can. Man, have some sympathy instead of being so high and mighty to jump on folx - end of my speech and listings/readings here. Good luck to all of you and God bless. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2000 Report Share Posted January 28, 2000 Well, you kids! I needed a belly laugh this morning. (Hiding in the closet- makes for an interesting scenario, but putting videos in the vcr's all at the same time- now THAT " S entertainment! HAHAHA! Seriously- Jill, what great news!!! So glad to hear that Paxil is working well for Tanner. PB is one of those kids who is hard to dose SSRI's accurately- they tend to oaveract in his system over time. But we have seen long-lasting effects even after stopping them- mostly with language and social skills, so I am imagining this wonderful family event of yours !!! Thanks for sharing. I am sitting here realizing I am having a PMS black cloud moment. Not triggered by events- just feeling GGRRRRR. But I am realizing I am getting anxious over starting the respirodal tonight. So, all of you who have your loved ones on this- Anyone on Resperidol & Clonidine at he same time? Sara, I thank you for all the posts about Elie's combos of Resp. and the other meds that have helped with the side effects. I've got that tucked away in the back of my brain. Also, I thank all who have been cautionary about the weight gain. I feel like this has been a good " heads up " . I have discussed this at length with our ped. and he has had some kids on it who haven't had a dramatic gain. But he feels that the benefits overall outweigh (OOHH BAD PUN! SORRY) the side effects. He isn't over concerned at this point about tardive dyskinesia because that is one of the least reported side effects. He's a little concerned about agitation as a possible one. Now, I am hoping to tackle this weight gain possibility head on. Joan, I was wondering if you could advise me a bit about cal/pound/day needed just to maintain weight? At this point in time, PB only eats 3 meals a day and doesn't request food in between meals. Getting enough fluids in him is our biggest problem, and I wish he'd drink more water because I know how high-caloric juices and juice drinks are. (diet pop isn't an option- he can't tolerate carbonation). He'll just sip a little water when we brush his teeth. I can e-mail you privately about some of these details. As it stands, since he buys his lunch at school, and the quality of those meals are poor, I can send his lunch and control that aspect. One of the problems with dinner is that we eat a lot of soups, stews, stir fries, etc, and those always are tough to get a portion control handle. The best thing is that since PB has a bit of reflux if he overeats, he has always been good about stopping when he feels full- he'll push his dish away and if I don't offer him his fig newtons, he (sometimes) forgets about them. What I am curious about is if he is going to start looking for more food or asking for more. I'll know soon! I also know that we will need to increase activity. I'm just imagining that his enthusiasm for doing things might be even more dampened if he's sedated by this drug. But swimming is one thing we can do. At any rate, I know so many of you have been really pleased with the effects of this drug, so I am trying to be positive. Okay, what is cowboy koolaid?? HHMM? Sounds intriguing!! HAHAHA! Last but not least, thought I'd pass this amusing website along- hope it helps any of you who are feeling under the mental weather today! http://www.hampsterdance.com Hugs all around! MB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2000 Report Share Posted January 28, 2000 Hoping this takes........I got an email saying I was " unsubscribed " . Testing........1.2.3......... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2000 Report Share Posted January 28, 2000 hehe hehe cowboy koolaid is an oklahoman special........... we used to use an old horsetank(clean of course) or a big canning tub and make our mixture....... wont tell the secret but basically its marinated fruit like pineapple, kiwi, mango, apples, oranges, ect mixed with a variety of high volume concentrated alcohol........the fun part is you actually bob your face in the tub to get the best mixture.......hehe been a very long time since i actually did this..........but the way ashton has been and my luck running, I SAY WE FIND A TUB TODAY AND START MARINATING THE FRUIT.........HEHEH LEAH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2001 Report Share Posted April 16, 2001 In a message dated 4/15/01 4:25:38 PM Pacific Daylight Time, writes: > take a sublingual b 12 first thing in AM and again at 10 AM for 3 > days.....then do 1 " dot " under the tongue once a day in the AM. IT > WORKS!!! be well! > S in VA > > Thanks for that info. I just got the sublingual B12 today at GNC and was wondering how much to take. I was hoping that I would get a boost and want to start to exercise more. My 85# doggie and I both could sure use it (and she is not overweight!). I will take 1 a day per your reccommendation. Anyone else taking the sublingual B12? Joni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2001 Report Share Posted April 16, 2001 I take the B-12 Joni, 1000mcg's a day. For me that's 2 tiny tabs, but read your label. Some are 500's and some are 1000's. Best of life to you, PhillyJude Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2001 Report Share Posted April 25, 2001 Hay!! I am and I am 17 years old with Bleph,I had surgeries when I was 2 years old & it has not effected me up until the point of adolecense when I was not developing normally. I have the type that involves infertility so,--I know how you feel in a way:\ Even though I am not trying to have a baby I understand. I am just wondering if you are or were on Estrogen..? I have been for about the past year..Nothing much has kicked in,...........But I guess I am taking a day by day and trying to be comfy withmyself inside and out. Take it Ez everyone..!!!! Remember U R not alone:D:D ===== ...Truly.. PuffR123@... 'A Dream Within A Dream'~Poe __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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