Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 Hi Pepper, Welcome to our group, and thank you for your kind words. I'm sorry to hear that you've got a cold on top of everything else. I'm glad that you've given up some of your TOPS positions while your lupus is acting up. I'm sure I don't have to tell you that stress is one of the things that can trigger a flare, and right now it sounds as though you need to take care of your health. How long have you been on the plaquenil? You're right about it being a slow acting drug. I was on it for awhile, but I was in a bad flare and my health was rapidly deteriorating, so I couldn't wait around to see if it was going to work. I had to resort to chemo drugs, in addition to the prednisone, to suppress my overactive immune system. They had me scared with the eye thing. Here I was, bedridden, and pretty much a broccoli....all I had going for me was my mind (which ain't much), my hearing, vision, and the fact that I didn't lose the muscles that controlled elimination (praise God!) Then they tell me that the plaquenil, which is actually an anti-malaria drug, may help, but it might also mess with my vision. Did they give you the graph paper to look at every day. They gave me this paper and said that if the boxes ever started looking different I'd have to stop taking the plaquenil. I met a lady on a dermatomyositis board who was on plaquenil. She said it really helped her to get rid of the rashes that she was getting. I hope that it helps you, too. You're correct about my dermatomyositis being a rare thing... chances are 1 in 40,000. Gee, aren't I special. I really don't have anything to complain about. I've been in remission for a few years now. I'm looking forward to getting to know you better and seeing you at SRD. If the spirals that you are talking about are what I think, there is a place across the street from the convention center that has some. Have you ever been to Waco? We'll be in walking distance (like right across the parking lot and street) from a warehouse district that they've revitalized. There are restaurants, and in the upstairs part of this huge warehouse they have a bunch of different venders and artisans' wares. Its a great place to find unique gifts. I go there a couple of times a year. Once again, welcome to the list. Hope you feel better real soon! Leader, TOPS # TX 1645, Copperas Cove 278.75 starting wt / 239.00 current wt / 39.75 lbs lost / 74.00 to goal Every day you spend drifting away from your goals is a waste not onlyof that day, but also of the additional day it takes to regain lostground. -Ralph Marston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Thank you also for the kindness. I have been on the plaquenil since January now. No the doctor did not give me a graph to follow or look at but he sent me to the optamologist for a check up and he told me that if at any time my vision seemd different in in little way I was to stop the drugs and go back and have my eyes check. Its like I sit here and ask myself which is worse the flare ups or going blind and I think i would rather have the flare ups. The ANA is still at 1800 and I have to go back on the 20th of April and see if this med is helping any. I am on several meds but one I am one I really hate taking it because it is a type of blood thinner and I am to carry a card around with me stating that I am on this med so in case I am bleeding the doctors will know what to do to stop it. It is called methotrexate. Yesterday I barely pricked my finger with a tiny tiny piece of glass and my finger bleed for a long time. I mean it was a tiny prick no bigger than a pin's head but it just kept bleeding. I can only imagine what it would be like if I really cut myself. I have trouble sleeping because of the pain and so I sometimes take the meds he gave me to help me sleep BUT I ahte taking meds so i try not to take them very much. Sometimes it seem as if I am in a no win situation, but, then I stop and think about all the people whio have more serious health issues than i do and I shake it off. I hate giving up all this stuff I do for my chapter but as you said it can be stresssful and I know without a doubt that stress makes me feel awful. When my nephew died back in october, I did not know I had lupus yet and I was in bed for almost a month. I thought it was because I was just depressed over his death, but, I guess the stress and the depression from the death brought on a really bad flare up and this was the begining fo finding out I had Lupus. My docotr said I have had it for quite sometime. According to some of the things he told me I would be willing to bet I ahve had it for about 8 years. So I am boxing everything up and taking it to the leader next Thursday. There are a lot of wonderful members in there and soemtimes I think they would do more if they were asked to do it, but, if someone has the positions then no one really wants to take it away from them. I know when I took over the scarpbooks they were in horrible condition and I redid them all and they look great and are a little more informative than they were. I got to get this last one caught up and see thats stressing me knowing I am behind on the scrapbook. I am thankful that your condition has gotten a little better and I will also keep you in my thoughts and prayers. I know without a doubt you have had it a lot worse than I ahve and you are an inspirtation for me. The spirals are actually a long (about 12-14 inches) twisted dangling thing. I had been wanting some for some time but never could find any and I ahd told my sister I wanted some and she was looking for some for me and then I got Melody as a Secret santa and she sent me a couple and I was totally shocked that she sent me those. It was uncanny!! Then the very next week someone else got me a couple and then my husband found me a few so now I ahve about 17-20 of them. I love them. The first one that melody sent me has butterflies on it, I am looking forward to meeting you also. It is only 12 more days!!! See ya then, Love pepper > >Reply-To: TexasTOPS >To: <TexasTOPS > >Subject: Pepper... >Date: Wed, 10 Mar 2004 23:48:44 -0600 > >Hi Pepper, >Welcome to our group, and thank you for your kind words. >I'm sorry to hear that you've got a cold on top of everything else. I'm >glad that you've given up some of your TOPS positions while your lupus is >acting up. I'm sure I don't have to tell you that stress is one of the >things that can trigger a flare, and right now it sounds as though you need >to take care of your health. How long have you been on the plaquenil? >You're right about it being a slow acting drug. I was on it for awhile, >but I was in a bad flare and my health was rapidly deteriorating, so I >couldn't wait around to see if it was going to work. I had to resort to >chemo drugs, in addition to the prednisone, to suppress my overactive >immune system. They had me scared with the eye thing. Here I was, >bedridden, and pretty much a broccoli....all I had going for me was my mind >(which ain't much), my hearing, vision, and the fact that I didn't lose the >muscles that controlled elimination (praise God!) Then they tell me that >the plaquenil, which is actually an anti-malaria drug, may help, but it >might also mess with my vision. Did they give you the graph paper to look >at every day. They gave me this paper and said that if the boxes ever >started looking different I'd have to stop taking the plaquenil. I met a >lady on a dermatomyositis board who was on plaquenil. She said it really >helped her to get rid of the rashes that she was getting. I hope that it >helps you, too. >You're correct about my dermatomyositis being a rare thing... chances are 1 >in 40,000. Gee, aren't I special. I really don't have anything to >complain about. I've been in remission for a few years now. >I'm looking forward to getting to know you better and seeing you at SRD. >If the spirals that you are talking about are what I think, there is a >place across the street from the convention center that has some. Have you >ever been to Waco? We'll be in walking distance (like right across the >parking lot and street) from a warehouse district that they've revitalized. > There are restaurants, and in the upstairs part of this huge warehouse >they have a bunch of different venders and artisans' wares. Its a great >place to find unique gifts. I go there a couple of times a year. >Once again, welcome to the list. Hope you feel better real soon! > >Leader, TOPS # TX 1645, Copperas Cove >278.75 starting wt / 239.00 current wt / 39.75 lbs lost / 74.00 to goal >Every day you spend drifting away from your goals is a waste not only >of that day, but also of the additional day it takes to regain lost >ground. -Ralph Marston > > > > > > > > > > > > > _________________________________________________________________ Store more e-mails with MSN Hotmail Extra Storage – 4 plans to choose from! http://click.atdmt.com/AVE/go/onm00200362ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 >>PEPPER WROTE>>I am on several meds but one I am one I really hate taking it because it is a type of blood thinner and I am to carry a card around with me stating that I am on this med so in case I am bleeding the doctors will know what to do to stop it. It is called methotrexate. hmmm...I was on methotrexate for about a year. I had to give myself subcutaneous injections once a week. It's also a chemo drug, but used to treat people with autoimmune diseases. I don't recall it being a blood thinner. Although, I do recall cuts and stuff not healing as well while I was on it. It also gave me mouth lesions. >>PEPPER WROTE>>The spirals are actually a long (about 12-14 inches) twisted dangling thing. Yup, those are the things that they have at the shops in Waco....really pretty, all different...shiny, sparkley, fancy. I'd have to have a pretty strong string or chain to hang 'em from because the wind is always blowing here. Hugs, Janet Quote Link to comment Share on other sites More sharing options...
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