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Medical Forum / Diseases and Disorders / Lupus / January 2004Everybody ? Mair ?
Where are you all? Still bloated from the meals? Was Santa good to Pigmet? Hugs J > Where are you all? Still bloated from the meals? Morning J:)) ok in short form--- on 23 , that pc virus that up-to-date Norton missed , killed part of my machine , no internet explorer. No surfing ,machine to go to the big garage tomorrow:(( On same day the white thingy's in the throat made me go to anti bio drugs, woops to late fluid in lungs heart rate to 130 , GRRRR . Go to hosp.? NO ,NAWTA , NO WAY! Hosp. has over 80 active flu strain A something and the public has been barred from visits. Me figures my chances are better in my own environment. Today white thingies are gone. heart rate is about 100 , only sinus infection with migraine since 23 is left . lungs not bad at all , just upper quad whizzes. Christmas was great everyone came here, and I came out of me den when I could for a bit . All have left this day :(( but they were weighted down with goodies. Bruce On. " J , like I have only green grass everywhere , yuckers , where's me snow!!" Ah I see, busy household with everything going on. Were you stuck in the den working on the virus or staying away from visitors so they wouldn't get sick? Hope you feel better soon Bruce, Hugs J > Morning J:)) > ok in short form--- on 23 , that pc virus that up-to-date Norton missed , [quoted text clipped - 16 lines] > Bruce On. " J , like I have only green grass everywhere , yuckers , where's > me snow!!" Hi J, We all had a nice Christmas. Here is part of a letter that Pigmet wrote to a friend: ------ Pigmet writes: I am so excited! I did fall asleep and so did not get to see Santa. But there were so many toys when I woke up this mornin. Many of them not "toys," but real work items, which is what I wanted. I had wished for a bucket and a shovel--for treasure huntin, see? But what did I get? I got TWO buckets and TWO shovels, and Santa's note said that it was because I like so much to take a friend along with me when I treasure hunt. Also I got a vest, like a fishin vest, to keep things in when I am hikin and huntin. It has a special pocket that Major Breadlet can ride in as we go, seeins how he has a hard time keepin up when we hike. I got a Swiss Army Knife! It is all read and shiny! And the best for last! a big, flat package. I took off the wrappins and it looked very old. I opened the heavy cover and what did I see? MAPS! TREASURE MAPS! If anyone knows where treasure is, Santa would know. Several of the maps point out treasure right close to here. PS: I also got a pair of red high-topped tennis shoes, which I had wanted for such a long time, and my stockins... the little one had a bottle of real vanilla in it, and the big one was full of red sweet potatoes! With love and Merry Christmas, Your devoted Nephew, Pigmet > Where are you all? Still bloated from the meals? > Was Santa good to Pigmet? > Hugs > J I love maps ! I'm so jealous of Pigmet, I like ancient maps and globes, it's so interesting the way the world was and now is, over thousands of years. Topographical maps, maps, maps, maps. and a swiss army knife? Wow ! Can you tell I'm excited? A vest with lots of pockets? I love lots of pockets in everything.. Hope you and Pigmet find your treasure. What a wonderful collection of gifts, you are so blessed this year. Hugs to Mair and Pigmet J > Hi J, > [quoted text clipped - 27 lines] > With love and Merry Christmas, > Your devoted Nephew, Oh, Bruce. I'm so sorry you're in such misery. I used to get those white things until they finally removed the white thingy makers when I was 15. Oh, such misery they used to be. I'm very glad you were able to stay home though. It is very scarey in the hospitals & doctor's offices. J, we were doing pretty good, weren't we? We got up to like 380 posts around Christmas. Maybe everyone is in the bathroom now? : ) I know I should've left the eggnog alone. Shoulda just spiked it if it was gonna bring misery anyway! Speaking of absentee's, the 1st falls on a Thursday & I never know what Thursday's will bring after my MTX on Wednesday, so don't forget the roll call. : ) You are like the earliest poster here, so get 'er going, k? Hugs4uBoth, Maggie Gee, I was going to buy eggnog, but decided not. The week before I had a "gut" reaction to scrambled eggs and toast. Is it the foods or us?...(scratching my head about that one).. Or is there fats in storebought eggnog. Someone on another newsgroup told me eating margarine is like eating plastics. (too much fake stuff in it) What is this that Bruce has "the white thingies" please? thrush? or something lupus? I was thinking of waiting until next week for the roll call, Janers is away, and many others might be either away or after jan i, recovering from a hangover ;-) And there's no rule that we have to do it every month, but sure wish some of our escapees would post and let us know how they're doing, Paula and Sherry are two that come to mind, then Michael who rarely says anything. What ya think ? Hugs j > Oh, Bruce. I'm so sorry you're in such misery. I used to get those > white things until they finally removed the white thingy makers when I [quoted text clipped - 12 lines] > Hugs4uBoth, > Maggie Hi J! Those white thingy's are on the tonsils. or at least mine always were. I assume Bruce's were too. I guess they just called it tonsilitis? Oh, they are awful! They hurt sooo bad! I'm so glad my tonsils are gone as I had them so often as a kid/young teenager. That's fine about the roll call. Probably be best as the first is a hangover holiday & we may be in for disappointment from the get-go. Yes, it seems the lurkers just don't wanna be bothered with us. <sniff> Well, Lee has posted a coupla times. Bless our Lee! Hey! I said Haaaaay!!! I hereby challenge a lurker to start this month's roll call. Hah! Howdaya like me now? Ahem...just don't wait too long on the lurker, k? : ) Hugs, Maggie > Those white thingy's are on the tonsils. or at least mine always were. > I assume Bruce's were too. I guess they just called it tonsilitis? Oh, > they are awful! They hurt sooo bad! I'm so glad my tonsils are gone as > I had them so often as a kid/young teenager. Well, speaking of which something at the back of my left throat is swollen and painful again ! (for weeks now) It seems to happen every 6 months or so starting summer 2002. By the time I get an ENT visit it's gone or he says it's not my tonsil. Hurts when I swallow. Chokey when I try to sleep. I can't find a picture of where the tonsils are or what the big lump is at the back of my throat. J-going searching. Tonsils are the little lumps that hang down on each side in the back of your throat. Open wide and look! You could put your finger in there and touch them. Gag!!!!! Ok, that is if you still have them. Many of us have had them removed along with the adenoids. Where the heck were the adenoids hiding in the throat and why did they take them out too? No clue. Bev > > Those white thingy's are on the tonsils. or at least mine always were. > > I assume Bruce's were too. I guess they just called it tonsilitis? Oh, [quoted text clipped - 9 lines] > the back of my throat. > J-going searching. Did you find them, J? Usually, it is the tonsils that causes the soreness in the throat. I haven't had more than a scratchy to slightly sore throat since mine were removed. I guess they act as a filter, so to speak. It's weird that it's just on one side of your throat though. It may not be the tonsil, but the way you said it acts up every year, it's very possible. The tonsils kinda look like a "bumpy pillow" on each side in the back of your throat. Whenever the white spots would come, I always had to have antibiotics, so it's unlikely you get those. I don't think they get better on their own. If so, you'd be very miserable during the process. And thank you Bev for making me gag! LOL! Hugs, Maggie > Tonsils are the little lumps that hang down on each side in the back of your > throat. Open wide and look! I can't see, it's too dark and far back. I don't think mine is infected. When it started summer 02, I tried 2 antibiotics and neither fixed the problem, then it occurred around same time in winter, then last summer again, now again. Gad, am I tried of this ! > You could put your finger in there and touch > them. Did, the left one is hard as a rock and pain. the right is soft and no pain. > Gag!!!!! Ok, that is if you still have them. Many of us have had them > removed along with the adenoids. Not me > Where the heck were the adenoids hiding in > the throat and why did they take them out too? No clue. Behind (I think) the tonsil. I think they usually do remove the adenoids with the tonsil. Anyway, since I don't have a clue.... for weeks <g> I have been melting Naproxen down my left throat to try and stop the pain, after posting last night, I remembered the dentist told me it was TMJ-like (but not quite TMJ) probably causing it (since by the time I got referred to him, it was gone again), so I am now trying a device. I was supposed to go see the specialist dentist next time it occurred. Go figure, I forgot and/or it's the holidays. If it's not gone after a week or so, I'll go see him. . thanks all, sometimes after posting something, I "clue in"..I'm very sorry I troubled you, I should have figured it out myself. Hugs Maggie, Bev and Bruce, J PS the ENT won't remove it unless it's "big" or infected, it does not get big enough for him but it does bother my breathing during sleep, like they say here http://www.charlestonent.com/throat.htm Guess he doesn't read the internet. And, oh never mind, hugs. Going back to bed. Hi J! Now what on earth made you think you were wasting anyone's time? Shame on you! : ) It does sound like the tonsil. That's weird to me as I figured it would be both acting up at the same time. The TMJ-like thing doesn't make sense to me as it's happening just twice a year or so. It it were TMJ-like it would progressively get worse, I would think. I would urge you to have it checked simply because it's hard. (I cannot believe you didn't gag! LOL!) Can you see it with a flashlight? Is it red? Did it feel swollen as well as hard? My aunt was around 50 when she had her tonsils removed & it was an awful, awful thing. They say the older you are, the worse it affects you. I imagine the docs would only take it out as a last resort for this reason. Something else that's interesting about the tonsils is they now believe those with their tonsils removed have a better chance of getting arthritis. I heard this on the news about a year ago, I think. I have to wonder just what their role is as far as AI diseases. Hugs, Maggie > It does sound like the tonsil. That's weird to me as I figured it would > be both acting up at the same time. The TMJ-like thing doesn't make > sense to me as it's happening just twice a year or so. It it were > TMJ-like it would progressively get worse, I would think. well one of the theories is it's not the joint but the ligaments and tendons around the joint and I do have other tendon and ligament problems, but it is odd to me that it's always (and just) the left side. Yes, it feels swollen . It is red and hard as a rock. And it hurts to swallow. and now my TMJ (area) is aching a lot on the left side. > My aunt was around 50 when she had her tonsils removed & it was an > awful, awful thing. They say the older you are, the worse it affects > you. I imagine the docs would only take it out as a last resort for > this reason. Yes, that's what I was told by the ENT. Just "put up with it". (unless it gets bigger or infected). I guess if I didn't have the "responsibilities" here, I might take the chance to get rid of a nuisance thing. > Something else that's interesting about the tonsils is they now believe > those with their tonsils removed have a better chance of getting > arthritis. I heard this on the news about a year ago, I think. I have > to wonder just what their role is as far as AI diseases. I don't know, never heard that one before. Which type of arthritis? Rheumatoid? PS If no one else starts a poll, I'll start one next week. How long are you gone, please. Hugs to you Maggie - how will I ever outdo you though, you brought out so many lurkers ! J I can't find it! I know it was a year or so ago though. I can't remember if they said "Rheumatoid" arthritis or not. It was just one of those short things. Like those Eggs-will-kill-you-this-week segments. After reading that about the tonsils & mononucleosis & Chlamydia, it does make sense to me. They do believe that some reactive arthritis can come from both of these viruses/infections. And both Rheumatoid & Reactive arthritis are indeed AI diseases. I'm not saying that I wouldn't have an AI disease if I still had my tonsils, but I do have wonder if I would've gotten at the age I did. My Aunt too. Her AI disease came on in the years after her tonsils were removed. Oh well, I can't find the cotton-pickin' article, so it's just me yapping now. LOL! How do you know how you'll do with them lurkers? Have you ever called them out before? Here's some pointers: Imagine being a lurker. Now type! LOL! You'll do fine. Tanya was to start the roll call if she gets back from her celebrations in time to see my post. I'd say give her til Thursday or Friday, k? I'll be here, unless I have a reaction from MTX/Doggie turmoil! : ) Hugs4u, Maggie > How do you know how you'll do with them lurkers? Have you ever called > them out before? Here's some pointers: Imagine being a lurker. Now > type! LOL! You'll do fine. Tanya was to start the roll call if she > gets back from her celebrations in time to see my post. I'd say give > her til Thursday or Friday, k? I'll be here, unless I have a reaction > from MTX/Doggie turmoil! : ) I think it's your infectious manner that draws them out. You know the "flies stick to"..nope not that one! <g> Now I'm confused, it's Friday today. Do you mean next Thursday or Friday? Sounds good to me, since I think lots will still be busy with family through to the beginning of next week. also I'm not sure we got a confirm from Tanya for your volunteering her, did we? I think she only posted once, then disappeared. Maybe you scared her off with that? Hugs J HI J! I can't quit giggling. First Andy, now you! Yeah, I told her we figured with the long Holiday weekend, that next week would be better. If I scared her away, I guess we'll know it come next week. LOL! I have a feeling she's too courageous to go back to lurk mode though. OTOH, it is easier for a lurker to jump in on a post rather than starting a new one. I remember doing this with your "mouse kidney" post. So, I guess we could give her til Wednesday, unless she reply's & says, "I'll do it Thursday/Friday." She won't let us down, she's just waiting to surprise us, watch! <w> Hugs, Maggie > OTOH, it is easier for a lurker to jump in on a post rather than > starting a new one. I remember doing this with your "mouse kidney" > post. Oh that was you eh? Well, am I glad I posted that one, what a diamond you are to this newsgroup, Maggie. I'll have to think of some other ones to dig up to get those lurkers out and posting. I expect they are enjoying all the posts and getting lots of information along the way. Sometimes too much. I did on the fibro newsgroup, too many opinions. the new term for "too much info" apparently is DataFog, I got it <g> Hugs J Hehehe, I don't scare off too easy...just don't get on here very often anymore, I posted "roll call" as soon as I got back and sawthat I was supposed to,I can't do something I didn't know about! Tanya > Hehehe, I don't scare off too easy...just don't get on here very often > anymore, I posted "roll call" as soon as I got back and sawthat I was > supposed to,I can't do something I didn't know about! Tanya big smile here when I saw your Roll Call post. Thank you, thank you, thank you and big hugs Tanya. Since you don't have a lot of time, don't worry about followup's on each post, we'll thread drift them... J > My aunt was around 50 when she had her tonsils removed & it was an > awful, awful thing. Hi Maggie, When my mum had a tonsillectomy as a kid, she got a huge bib, some numbing stuff on the tonsils and then they popped her tonsils off while she was sitting upright. She said it was horrible and the blood just poured down the bib. This was in the 1960:s in Austria, though. > Something else that's interesting about the tonsils is they now believe > those with their tonsils removed have a better chance of getting > arthritis. I heard this on the news about a year ago, I think. I have > to wonder just what their role is as far as AI diseases. My mum had lots of tonsillitis as a kid (hence the tonsillectomy), and has Sj?gren's and/or another autoimmune connective tissue diseases, although that might just be a coincidence. Everyone else in my family has AI diseases too. Streptococcal tonsillitis (and maybe some other infections, but I only know this one for sure) can trigger psoriasis. I was in a Remicade study for ankylosing spondylitis a couple of years ago. I have had surprisingly few infections in my life, especially considering the meds I'm on and how many germ-filled people I've been around, but a few days after the 3rd infusion, I got tonsillitis for the first time in my life. Two weeks after the tonsillitis was gone, it came back and I was put on penicilline again, which gave me an anaphylactic reaction, so I didn't finish the penicilline course. Shortly after this, I developed skin psoriasis, then PPP (the blisters you also have), then nail psoriasis some months later and finally my finger joints started getting inflamed. I kept getting tonsillitis until Remicade was completely eliminated from my body, which took 6-7 months. Think I had 8 bouts of tonsillitis/tonsil abscesses during that time. I got tonsillitis again upon starting Enbrel last year, but since taking Clindamycin I haven't had any more tonsillitis in almost a year. Enough about my tonsils! Have a happy new year, Nina Good grief! You make me hurt just reading about it. I've only has streptococal tonsillitis once in my life, and I thought I was going to die it was so painful and made me so sick. This sure sounds like a case where cure (Remicade) was worse than the disease. Hope some of the problems have cleared up or at least gotten better for you. Happy New Year to you. Charlotte >Streptococcal tonsillitis (and maybe some other infections, but I only know this one >for sure) can trigger psoriasis. I was in a Remicade study for ankylosing [quoted text clipped - 16 lines] > >Nina > Good grief! You make me hurt just reading about it. I've only has > streptococal tonsillitis once in my life, and I thought I was going to > die it was so painful and made me so sick. This sure sounds like a > case where cure (Remicade) was worse than the disease. It sounds worse than it was. The tonsillitis got milder as Remicade faded. Good thing was, my arthritis would improve during each infection, so I felt really good joint-wise. On the other hand, my tonsils were so swollen that noone wanted to talk to me because it was impossible to understand what I was saying. Also, I noticed that there is such a thing as too much ice cream. Happy New Year to you too! Nina Hi Nina! Happy New Year to you! I cannot believe they used to remove tonsils like that! Your poor Mum! <I'm just sitting here, shaking my head at that one> It's a wonder they didn't remove *your* tonsils, but they have adopted a different attitude now. They will not usually do it unless you've had 8 bouts in 1 year. You did though, or it sounds like it was within a few months to a year, from what you wrote? Nonetheless, you now know true misery, IMO. It is a horrible pain & you just *gotta* swallow--no way around it. Isn't the Clindamycin a drug they use to treat reactive arthritis? Is it an antibiotic? I thought I saw it today while searching, but....then I took a nap & much of what I learned is now stuck in some desert with a dragon. I need a book about dreams, I think. : ) Hugs4u, Maggie I was offered a tonsillectomy, but I had "a bad feeling" about having my tonsils removed, so I declined. When trying Remicade again, it didn't work anymore plus I got serum sickness from it, so I couldn't continue with Remicade anyway. Clindamycin is an antibiotic. Don't know about reactive arthritis, but I know that it's used for pimples as well. It cleaned up my Pred pimples nicely. Nina Hi all, My name is Tanya, I am a "lurker" I guess. Anyway, I have read posts here a few times and seen Maggie's challenge....so here I am.....I only posted in 1 other place for a short time and the thing vanished, folded up, or whatever you call it. As for roll call, what do you want to know? Hmmm, I live in NW Indiana, close to Chicago, IL. I am, oops, will be 42 on Jan 1...see the 1162 in my nic? It's my birthday-I'll have to explain the tractorgirl part another time, what else, let me see, I married young and have been divorced since 89, I have 1 son, who is almost 23 and yes I have lupus. I guess I never posted before because I didn't want a bunch of people "preaching" at me for the things I don't do, in regards to having lupus. Over the years I have been fed up with doctors and no med they ever gave me helped for more than a few weeks, most caused me to have other things go wrong, So, now I don't take any, actually since 93 I haven't taken any, and yes I do have some very serious things going on but I have learned other ways to deal with things and when I am really really bad off, I just have "down" time, where I am kinda "non-functional" for a few days but most the time I push myself to the limits and beyond and deal with pain and physical limitations the ways I have learned how to. Anyway, got to go, just couldn't pass up a "dare". I wish you all a SAFE and Happy New Year. Tanya Hello Tanya, Happy Birthday and welcome. Glad you couldn't pass up the dare. I, too, married young except I've kept him - because he's a real sweetheart. There's a few years between us, more than I care to admit. LOL I have two girls, one is 32 and the other is about to turn 29. I'm on the east coast down here in the SE corner of Virginia. We are all scattered all over the place. Shelegh has a map on her web site so you can see where we all live. Anyway we are a very nice bunch of people and no one is going to fuss at you unless you are really doing something terribly dangerous. I don't take anything more than aspirin for most of my aches and pains. So far I can still eat aspirin without any problems. And I just put up with most of the aches and pains. You sounded just like me when you posted about pushing yourself and down time, meds, etc. Bev > Hi all, My name is Tanya, I am a "lurker" I guess. Anyway, I have read > posts here a few times and seen Maggie's challenge....so here I am.....I [quoted text clipped - 18 lines] > > Tanya > Anyway we are a very nice bunch of people and no one is going to fuss at you > unless you are really doing something terribly dangerous. I don't take > anything more than aspirin for most of my aches and pains. So far I can > still eat aspirin without any problems. And I just put up with most of the > aches and pains. Me too, but i recognize that some have more pain than others. (or less tolerance) or have to be more physically involved in their daily lives. I can't even do aspirin due to bleeds. So it's baths, cold/hot etc. As you say, I'll not rant at Tanya, unless I see she's doing something dangerous. The side effects of some pain meds just don't seem worth it (for me) for the "return". Congratulations to you "oldie marrieds" too ! Hugs J >Me too, but i recognize that some have more pain than others. (or less >tolerance) or have to be more physically involved in their daily lives. I can't >even do aspirin due to bleeds. So it's baths, cold/hot etc. >J This is oh so true. Each of us are different, and able to control the 'same' symptoms is different ways. I've learned that if I will listen to my body (which sometimes I do not do!) I can often head off or lessed the severity of a flare without additional medication. Then, sometimes, I just have to give in and seek medical assistance. Anyway, Happy Birthday Tanya, and anything you've found helpful I would certainly like to hear it. One never knows when it might be of use! Charlotte BTW - hot baths w/lavender are my saving grace ! Happy Birthday to you, Tanya! May you enjoy a pain-free day full of celebrations! I just realized you were on a webtv too. Kewel! I hope you're as comfy as I am when I'm surfing & typing. : ) B-DayHugs4u, Maggie > ! May you enjoy a pain-free day Maggie, how's it going after the MTX? Hugs J HI J! Thanks for asking! I'm doing really good. Surprising, considering what Lucy put me through this week. : ) I've got a lot of yawns (yaaaaawn-can't even type it) going on over here though. I have been searching for the article about the tonsils & arthritis. I will try my local news archives a little later as I have found nothing except for a 1983 publication that doesn't even have a link. I did find this though & I thought it was pretty interesting: http://www.drmirkin.com/morehealth/9142.html I found this "tonsil" article via a CBS Daily Report website, so I think it's reliable. Do you have sleep apnea? Also, when you start awake, do you usually feel like you have to take a deep breath? If so, was the tonsil bothering you at the time the "starting" began? I'm just full of theory's! lol! The tonsils are amazing little boogers though, but I still don't miss mine. And I'm glad technology had advanced, so I wasn't awake! Poor Nina's Mom! Hugs, Maggie Hi Tanya, Thank you for the introduction. Don't worry. I won't preach. I hate it when people do that. I would be interested to hear about the ways you have found to cope with your lupus. I am fed up with doctors too, so any suggestions you have would be most welcome. So you are a new year's baby. Happy birthday to you. I hope you will talk to us again. BJ-Sk. Canada > Hi all, My name is Tanya, I am a "lurker" I guess. Anyway, I have read > posts here a few times and seen Maggie's challenge....so here I am.....I [quoted text clipped - 18 lines] > > Tanya Hi Tanya! A toast to you! I knew it would either take someone with courage and/or someone who couldn't let a dare go. And you seem to have both. : ) Your job now is to start a post titled "January ROLL Call" sometime next week. We figured with the Holiday & parties & the long weekend that next week would be a better time. Monday, Tuesday, Wednesday, whenever you want. We will wait on you, k? And of course, welcome to the group! I think everyone here is at fault for not doing what they're supposed to. From diet & meds to stress & working too much, we all have our quirks & are dealing with this disease as well as we know how to. Personally, I envy those that refuse the pain meds. My mother was like this & yet she insisted on me taking them. I insisted on me taking them too! lol! I'm 33, no hubby, no children, 2 dogs & have a Lupus-like disease. I'm so glad you're here! Glad you took the challenge & hope you'll be with us for a long time to come. Have a safe & happy New Year! aHug4u, Maggie Ok, I hadn't been back since my one and only post but I see Maggie is waiting for the roll call, I see several new posts but I will have to get back to them, kinda in a rush...hope all is well...Anyway, roll call, I amTanya, I live in NW Indiana just outside of Chicago, IL, very cold here today -2, I am 42, divorced,I have 1 son who is grown , 1 dog and 2 cats, and yes I have lupus. I will try and catch up with the posts tomorrow and will try to post whenI can get on here...nice too "meet" everyone and take care. Tanya I'm in Ontario, Fibromyalgia (for many years but only dx'd 5 years ago) and autoimmune thyroid and a bunch of other stuff. My brother might have Lupus, my uncle had it. Many friends of mine are here and indeed I think that's how I started here trying to get my lupie friend to post here. Then I found out about my brother. He's out West (Canada) and can't get a diagnosis/to rheumatologist. So I'm here learning, sharing and sometimes being useful. J yeah, ok... I will come out of lurk mode for a moment.. My name is Deb, 42, I live in Western NY (brrr......) I have osteoarthritis, fibromyalgia, lupus, thalissemia (sp?), high blood pressure, raynaud's and ??? I think the last time I delurked I asked about blisters on the feet... After checking for diabetes, my rhuemy suggested stopping the glucosamine supplement. It seemed to solve the problem. better late than never? Is that you, Deb?! You 'lil booger, if it is. : ) You were working to get your disability through, if you're the same Deb??? I even Googled you, but the email was returned. I am a worrier, like our BJ & many others. : ) Well, same Deb, different Deb, glad you came out, Deb! It's cold in the midwest too! Got down to -2° the other morning. The Ice is still hanging on the trees, but it did warm up to about 35° today, so I shouldn't complain. aHug4u, Maggie Don't think that I am the Deb you are looking for.. but howdy ! Yeah, it's dang cold here.. 0 this morning 10 now, predicted to be -10 to -20 tonight ( and that isn't counting wind chill) Is that you, Deb?! You 'lil booger, if it is. : ) You were working to get your disability through, if you're the same Deb??? I even Googled you, but the email was returned. I am a worrier, like our BJ & many others. : ) Well, same Deb, different Deb, glad you came out, Deb! It's cold in the midwest too! Got down to -2? the other morning. The Ice is still hanging on the trees, but it did warm up to about 35? today, so I shouldn't complain. aHug4u, Maggie <snip> Hi, my name is Sharon. I am a 24 year old college student, also work part time as a web developer at the college. I was dxed with UCTD about a year and a half ago, after about 8 tedious and painful years of docs saying that I'm crazy, etc. I live in NY with my fiance, and we are getting married soon, probably this summer after I graduate. I will be graduating in the end of May with a BA in Geology and a studio art minor. I found the best rheumy in NYU med center in Manhattan who has been treating me with prednisone and Quinacrine, also called Atabrine, for about a year now, and it has changed my life completely. I was going to drop out of school before I went to him, and now I'm graduating next semester and getting married! That's all folks! -Sharon Charlotte in Georgia. Lupus Like Syndrome (many of the SLE symptoms but negative dna strand, etc. Low positive ANA, high C Reactive Protein) Quick response. I'm here in the SE corner of Virginia. I've got lupus and a couple of other things. I work too many hours. I'm a grandmother of two beautiful granddaughters and mother to two lovely women. I've been married forever to the same guy. The holidays were hectic. Went to see the in-laws. Then came home only long enough to repack my bags and head out to the Virginia Association of Fairs conference in Roanoke, VA. Got sick as a dog one night. Scary when you are far from home without the hubby you rely on in such times. Sick as in I burnt the candle at both ends until I got scorched! Came home on Sunday and wasn't in the door ten minutes when the phone rang - it was my job. Seems the teacher who teaches the very little ones is going to be out for a while. Her daughter has been battling cancer for several years and it looks like she is losing the war. I don't think this teacher will be back until it is over. So I'm working from 8 AM until 5:30 PM 5 days a week. I'm beyond exhausted. My nerves are shot! We have two brand new little ones. One is a wanderer, very quiet but you've got to watch her like a hawk and the other is so spoiled he thinks if he screams long and loud enough he will get his way - he will also kick and other such fun things. Oh, as for the kitchen it has one partially finished counter. But the new cooktop is in place and useable. I have this terrible feeling this project will take forever, especially if I have to work until ......... Can't be any worse than the fence which is still in the works after almost 2 years. Oh, over the holiday the city sent in a contractor to remove dangerous trees such as the one in front of our house on city property; an old elm with Dutch Elm disease. Well, they dropped a chunk of the elm right on a section of our fence. The whole section now has to be redone. And I wonder why I'm frustrated and tired all the time? LOL I'm going to bed. My husband is having some dental surgery in the morning so I'm not working in the morning but have to have him at the hospital by 8:15 AM and it's an hour drive. Then after I bring him home and tuck him into bed, here, I can go to work. Never a dull moment. Bev > Ok, I hadn't been back since my one and only post but I see Maggie is > waiting for the roll call, I see several new posts but I will have to [quoted text clipped - 6 lines] > > Tanya Sending you hugs, Bev. You're sure having a rough time this year & it's just now getting under way. No wonder you can't ever get a project finished! Hang in there, k? Hugs, Maggie I'm a 46 year old stay-at-home dad to an 8 year old daughter and a 6 year old son. I have been married to a saint for nearly 24 years. She is the light of my life. I have Alport's syndrome, and just had my second kidney transplant in April, 2003. I developed some type of lupus-like disease about 5 or 6 years ago. My symptoms are fevers, night sweats, arthritis, pancreatitis, and severe fatigue. I'm here. The whole NW including our city of Portland, Oregon has been shut down all week first with snow then ice and all that comes with it. First time in the 30 years I've lived here that the airport has been shut sown and chains have been required within the city limits. I got my critical scripts filled Monday and had to go out today for grub and cat litter (I needed the litter far worse than the grub, believe me). Have been severly depresed, have had the flu and been practically suicidal since before Christmas. Am I glad the holiday's are over. Hope everyone is well. Have been trying to get back into some light remondeling projects on my new house. Can actually work about 30 minutes at a time, couple times a day. Have a funeral that I should go to tomorrow but my ex-wife will be there and although it's been over a year since I've seen her, I'm not sure I could handle it. Happy New Year! Michael Hi Michael, I am glad to see that you answered the roll call, but sorry to hear that you are so depressed. So many factors come into play and things are often worse at holiday season. It is a time of strong ,and mixed ,emotions. Try to keep in touch with us as you can. Many here worrry when we don't hear news of you. Take care. BJ-Sk. Canada > I'm here. The whole NW including our city of Portland, Oregon has been shut > down all week first with snow then ice and all that comes with it. First [quoted text clipped - 16 lines] > > Michael Michael I had been thinking of you and am so sorry that you have been having such a bad go of it! I am sending you 'energy vibes along with get well wishes' and I hope they help you! Hold your kitten and give her a hug when you are feeling too low; (I find that as good an antidepressant as anything, specially playing with my 2 cats, works wonders!) I hope you find some peace, both physical and mental and that all your bad stuff is behind you, gone with the old year and starting with a fresh slate with this new year! oh and a BIG Happy New Year to you too! soft hugs for you, from Shelagh "Michael Roeper" wrote in message : I'm here. The whole NW including our city of Portland, Oregon has been shut : down all week first with snow then ice and all that comes with it. First [quoted text clipped - 11 lines] : Happy New Year! : Michael > I'm here. The whole NW including our city of Portland, Oregon has been shut > down all week first with snow then ice and all that comes with it. First [quoted text clipped - 12 lines] > my ex-wife will be there and although it's been over a year since I've seen > her, I'm not sure I could handle it. ( ( ( Michael ) ) ) I kept going to "social" events at least once a year where ex would be, but it was very hard and I had to leave early. But maybe that's part of the healing process? facing the situation.. After year 3, it started to get a bit better for me, but I know how hard it is. His new squeeze keeps calling me for advice and this week (after their lives were in crisis since before Christmas), I did an "intervention" and called him. He opened up to me and it helped him to get the problems sorted out for now. I hope I've moved on but my heart still hurts and yearns. Well, it's hard to stop loving, eh? J Michael I was thinking of you when Portland got hit, damn I hate that you feel so bad!! I am right there with you, but wish I could wave my magic wand. The NW can't handle that kind of weather, we are so spoiled with our mild weather. The depression is the worst thing about any kind of illness, even pain relief is nothing compared to that black void. I ride the wave and hope you catch one to carry you to the beach for some R&R. I get so depressed and think nobody gives a sh-- and of course I won't talk about it because I feel like there is really something crazy wrong with me.... dig my own hole..... Michael, we are here and we all care! Leslie (your neighbor to the north) > I'm here. The whole NW including our city of Portland, Oregon has been shut > down all week first with snow then ice and all that comes with it. First [quoted text clipped - 16 lines] > > Michael I'm Gretchen and I am in awe of all of you. I didn't realize how much many of you have gone/are going through, but you cheer everyone on, give us information and links and make living with an autoimmune disease a little less lonely. I'm feeling pretty wimpy at the moment in comparison. I was diagnosed with SLE, Sjogrens and fibro almost 5 years ago at age 35 and am blessed to not have any major complications, although I take a boat load of meds to keep it that way. I work part-time and run my kids around full-time - then collapse, but I'm very grateful to be able to that. > I'm Gretchen and I am in awe of all of you. I didn't realize how much > many of you have gone/are going through, but you cheer everyone on, [quoted text clipped - 5 lines] > way. I work part-time and run my kids around full-time - then > collapse, but I'm very grateful to be able to that. I'm in awe of you ! chasing down one kid was enough for me, especially when he got to age of cubs, scouts, hockey and all that stuff. Too much running around and working also. I got volunteered as a cub leader, or the group was going to fold, then the other two quit on me, so I had to fold it, due to rules and I was exhausted with 20 little cubs... Wore me out, especially those very early morning Saturdays at the icerink..especially with raynaud's and fibro..too much for me, standing around in the cold...though I was proud of him :-) he wasn't terribly good at it, but he tried hard. but I had to quit, he never forgave me :( Hugs J > I'm in awe of you ! chasing down one kid was enough for me, especially > when he got to age of cubs, scouts, hockey and all that stuff. Too much [quoted text clipped - 7 lines] > Hugs > J Ooohhh... that's so hard. It's bad enough to have your life affected, but when illness keeps your kids from doing the things they love it's even worse. I did Girl Scouts for 7 years (had 24 first graders one year). Scouts is a huge committment - Boy Scouts even more than Girl Scouts, I think. Remember that there were 19 other parents who could have taken over and didn't - you did more than any of them for those boys. You gave them a great experience. Don't let guilt ruin it for you :o) Gretchen > I got volunteered as a cub leader, or > > the group was going to fold, then the other two quit on me, so I had to [quoted text clipped - 14 lines] > boys. You gave them a great experience. Don't let guilt ruin it for > you :o) Hi Gretchen, it was a cub leader and it was only 18 x possibly 2 parents (one of the other leaders was a parent, she had to quit, before me). I held out as long as I could while I sent a letter to the church, the school and home with each kid. Nobody, nobody called to offer help. I don't feel guilty, I bemoan the fact that my son still blames me after 25 years...geez... So here we were: one male Scout leader, who also was doing cub pack - had to quit single parent - her husband died, so she had to go back to work - she quit me - single parent, fulltime work, left alone with 20 kids - I did all I could and none of the other parents could find 2 hours a week to contribute..sheesh ! Even the head of the Cubs wrote and their letter made me feel bad as if I hadn't tried hard enrough to find other helpers. Oh well, we do the best we can, eh? J It's so hard to have your kids affected by your illness. I hate that my kids outdoor activities are limited by my photosensitivity - but hopefully they are learning compassion and how to deal with life's disappointments. You should be proud of what you gave your son, and the personal sacrifices you made. You did your share and more, another parent could have stepped up to keep the troop going. Without you, your son wouldn't have had that experience at all. Be proud of what you did. Being a scout leader is a big responsibility. I lead a Girl Scout troop for 7 years, but I think the Boy Scouts are tougher. Gretchen > It's so hard to have your kids affected by your illness. I hate that > my kids outdoor activities are limited by my photosensitivity - but [quoted text clipped - 5 lines] > what you did. Being a scout leader is a big responsibility. I lead a > Girl Scout troop for 7 years, but I think the Boy Scouts are tougher. Whoa..you too be proud :-) J Hi! I'm Octavia, I'm thirty-twelve years old and have SLE with cardiac and CNS involvement, fibro, 2 herniated disks (& degenerative disk disease), arthritis (facet joints too) with primarily right radiculpathy, blah, blah, blah, blah... but far be it for me to complain. <Insert Eyeroll Here> :) Blah, blah, blah, blah... I'm single parenting six year old boy/girl twins (den leader, PTA, pageant & cheer mom, Room mom and am the district Rep. for the Special Ed. Committee). I've been single parenting Damian and Sybil since Butthead left while I was preggers. Butthead (my little endearing love name for him) seemingly had a change of heart about becoming a parent, after the IN-VITRO, and I had to choose between the marriage and the pregnancy. Guess who won?! : P (And I take the "Damian and Sybil" line back. Well, the "Sybil" reference anyway! My daughter is far too sweet and kind to have been burdened with her brother and me! Oh gosh! What if there were some kind of "mishap" in the In-Vitro lab?!) God has a sense of humor! My son has an autistic disorder, ADHD AND his IQ is testing borderline genius! ACK! And I have problems keeping up with the twins while they're sleeping as it is! Curiosity combined with impulsitivity (nevermind being six years old and half of a set of twins) with a lupusy-limping-fatigued to my methotrexate laced roots mom (Of this I'm certain, I can see them. My roots! The only problem is that a bunch are in FRONT of me as I type! ACK!ACK!ACK!), is a sitcom waiting to happen! Lupies! I'm here! I'm here! And I am! I AM! Whoa Nellie! I am! (heehee! I've always wanted to write "Whoa Nellie"! Kewl! <G>) Watch this! Like a Labrador Retriever with a Milkbone, I can balance 20mg of Pred on my nose and almost faster than the eye can see, I can toss them into the air and catch them in my mouth, swallowing them whole with only one head toss, chomp and minimal drooling, never once taking my eyes off the bottle! Have I made a good first impression? :::thinking I better crawl back under my rock as this is my first post::: Yours in Hydroxychloroquine (I purchase my meds from a place called "Generia", as they're all labeled "generic"), Octavia Hi Octavia, Good on ya for choosing the twins over Butthead! He'd probably be harder to raise anyhow. Better he inflict his growing up on someone else. Also, I marvel at your commitment to your children at school. Welcome! > Hi! I'm Octavia, I'm thirty-twelve years old and have SLE with cardiac and > CNS involvement, fibro, 2 herniated disks (& degenerative disk disease), [quoted text clipped - 36 lines] > > Octavia Hi Octavia, Thank you for the great intro. It is so nice to meet you, and hear all about you and your children. You are more than welcome to join us whenever you can. BJ-Sk. Canada > Hi! I'm Octavia, I'm thirty-twelve years old and have SLE with cardiac and > CNS involvement, fibro, 2 herniated disks (& degenerative disk disease), [quoted text clipped - 36 lines] > > Octavia Hi Octavia! Welcome to the group! You sure have your hands full, don't ya? I applaud you! There's many Mom's here & I'm sure they can relate. I, on the other, decided to raise 4 legged children, but I can relate a little. I'm 33 & thanks to you, 30-10 no longer scares the weebees outta me! : ) We're a great bunch, which I'm sure you know by now, so stick around, post & respond & you'll feel at home in no time. I'm so glad you posted too! You made my day! I nearly cried last night cause our lurkers just won't come out.... Hugs4u, Maggie > . I'm so glad you posted > too! You made my day! I nearly cried last night cause our lurkers just > won't come out.... ( ( ( Maggie ) ) ) Maybe we've all got the "after holidays newsgroup blues" or everyone's hopping onto Michael's e-mail list. I got snow shovelling and cold and other troubles to deal with, so not so much time on computer these days. Hugs J LOL!! Thanks greatly for the belly laugh! You do have your hands full but IMO seem to be handling it very well; especially due to that sense of humor?! I too believe God has a sense of humor; my adopted son (now 29) was born with asperger's syndrome (also a form of autism) and he was born on the very day, one year later, that my 'natural' daughter should have been born on! (She was born early due to an eclamptic pregnancy and only made it 5 days... in those days being tiny wasn't a good thing though they perform mircacles today). Anyhow good luck to you! Hugs from Shelagh Footprints in the Sand oooO ( ) \ ( \_) Oooo ( ) ) / (_/ 'If He isn't by your side, He is carrying you' "Octavia" wrote in message : Hi! I'm Octavia, I'm thirty-twelve years old and have SLE with cardiac and : CNS involvement, fibro, 2 herniated disks (& degenerative disk disease), [quoted text clipped - 37 lines] : : Octavia > I too believe God has a sense of humor; my adopted son (now 29) > was born with asperger's syndrome (also a form of autism) and he > was born on the very day, one year later, that my 'natural' > daughter should have been born on! wow! incredible story. nice . yup! we think it's pretty cool! I don't believe in 'coincidences' *and never have* and so hey! there you go! Hugs, from Shelagh "selussos" wrote in message | wow! incredible story. nice . Hello Octavia, I'm breaking my personal rule and top posting to tell you, I really liked your intro. Hope to see you posting often. :-) J > Hi! I'm Octavia, I'm thirty-twelve years old and have SLE with cardiac and > CNS involvement, fibro, 2 herniated disks (& degenerative disk disease), [quoted text clipped - 36 lines] > > Octavia Hi Tanya I think we are all fed up with doctors... I know I am! They can't 'fix' us so it is frustrating and the symptomatic meds are harsh and so it is doubly irritating! Can't win for trying.... glad you checked in and started the role call... try to switch from lurking to posting more often and you might find a bit more peace of mind. Happy New Year to you! Hugs from Shelagh http://clik.to/lupus "Tanya" wrote in message : Hi all, My name is Tanya, I am a "lurker" I guess. Anyway, I have read : posts here a few times and seen Maggie's challenge....so here I am.....I [quoted text clipped - 17 lines] : couldn't pass up a "dare". I wish you all a SAFE and Happy New Year. : Tanya Welcome Tanya and Happy Birthday to you. My lupie friend lives in Indiana also but probably East. (I don't know States very well and would have to find a map then find her, then find you. I'll send her a copy in case she wants to come to the newsgroup, She lurks here sometimes too but her computer is offline for a while for an upgrade. Hugs to you J > Hi all, My name is Tanya, I am a "lurker" I guess. Anyway, I have read > posts here a few times and seen Maggie's challenge....so here I am.....I [quoted text clipped - 18 lines] > > Tanya > Gee, I was going to buy eggnog, but decided not. > The week before I had a "gut" reaction to scrambled eggs and toast. > Is it the foods or us?...(scratching my head about that one).. forgot to mention that I put margarine on the toast :-) > Or is there fats in storebought eggnog. Someone on another newsgroup told me > eating margarine is like eating plastics. > (too much fake stuff in it) Hi J, I have been busy cleaning up the mess we made over Christmas. Feeding frenzies like that create shrapnel. It looked like an army of pigs ate here. (No offense to Pigmet) Things will soon be back to normal. > Where are you all? Still bloated from the meals? > Was Santa good to Pigmet? > Hugs > J Glad the holidays have come and almost gone. I flared up with a sinus infection and broncitis the week before Christmas. It responded to the meds, but came back twice as bad the day after Christmas. At least it isn't the flu. (I had the vacine, so perhaps it helped.) All in all, this is nothing to complain about. I have a very dear friend who is in final stages of cancer. They are unable to control the pain well, and my heart is aching for her. Her children and even her sister and husband are not accepting the hard reality that the end is near. Lupus is no fun, but I sure feel small for complaining when their are others with much worse problems. Here's wishing a good start to 2004 for all. Charlotte >Where are you all? Still bloated from the meals? >Was Santa good to Pigmet? >Hugs >J |
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