Running To Stand Still

Question:

– Hide quoted text — Show quoted text – I’m fed up. Plain and simple. I’ve got my diabetes sorted. Money to pay bills but i’m not happy here ( insert place of choice for here) house prices are nuts, it’s getting to the point where unless you earn 40k+ a year you can’t afford a decent place to live in this country unless you live with someone who is also earning a decent wage. It used to be the case that 20odd grand a year would see you with a nice standard of living in a reasonable area with a nice house, garage, garden blah blah but these days it’s all gone to shit. Two % payrises labelled as cost of living rises seem to be the norm, except if you don’t work in the public sector you can’t strike to register your discontent. Kids don’t care, parents seem to care even less but continue to breed, police are useless etc. I cannot see any point at the moment in busting my hump to get by i really can’t. I’m not going to do anything stupid but i’m getting to the point where i could cheerfully fuck off and not come back. If you’re rich enough to afford a good accountant and have a business you can be as bent as a nine bob note and get away with corporate murder, if you have no money and 9 kids you can live the life of riley and foist your problems onto the state and whoever is unfortunate enough to be your neighbours safe in the knowledge that taxes from the likes of me will fund any shortfall you have. I don’t want much out of this life but what there is to get seems to be such hard work to get it’s really starting to make me question what the point is. That was more than half of my motivation for thinking about going abroad and enjoying what diabetic problem free time i have left and sorting out whatever needs sorting out as i go wherever that happens to be. If i drop down dead at 50 or go blind at 45 from retinopathy do i really want it to be here? I’m not trying to be morbid, just trying to work out what i want to do with the remaining best years of my life. I don’t have kids, i don’t have a wife or ex wife, got the dog and some family up north and a few mates and that’s about it …… not much of a reason to be here when the only person you really have to worry about is yourself. Maybe the bottle of red wine isn’t helping or maybe it’s inducing some kind of alcohol fuelled clarity i really don’t know and right at this moment in time i feel like i really don’t care. If it was just *blues* i’d not be so bothered, even mid life crisis i could cope with the same way i cope with other things but it’s more than that. I have a deep dissatisfaction with too many core things for it just to be that. I’m quite sure it’s not just me and i’m equally sure there are folks out there who are worse off than i am, but that’s of little consolation to be honest. I am very sure that this was not how i’d even vaguely planned things when i was thinking about what i wanted to do with myself. I rarely whinge about my "lot" in life but at the moment i’m feeling right at mental rock bottom because i can’t see any way out of it. Almost funny because from a physical perspective i’m in the best shape i’ve been in since well before being diagnosed. At no point was i warned that the better your physical state is the worse your mental one would become! If all this sounds familiar and it’s not just me then please do let me know otherwise i am begnning to think i’m going slowly barmy! I’m really in two minds whether to post this or not as i don’t want to sound like i’m moaning about nothing and i know it’s sod all to do with diabetes but i just need to get it off my chest. My downs are short lived but it seems that they are getting more frequent of late and that’s something that concerns me as i don’t believe they occur for no reason. Suggestions on the back of a postage stamp please, keep it short n sweet n simple. For now i’m going to finish this bottle of red and maybe start on the next one along with what i rolled earlier and probably pass out sometime later on and wake up in a better mood tomorrow. I am quite sure the thumping head will remind me with crystal clarity just what i did the night before the morning after. Patrick.

Get it off your chest However my humblest apologies I am most definately not ‘Short and sweet’ — Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

I’m fed up. Plain and simple. I’ve got my diabetes sorted. Money to pay bills but i’m not happy here ( insert place of choice for here) house prices are nuts, it’s getting to the point where unless you earn 40k+ a year you can’t afford a decent place to live in this country unless you live with someone who is also earning a decent wage. It used to be the case that 20odd grand a year would see you with a nice standard of living in a reasonable area with a nice house, garage, garden blah blah but these days it’s all gone to shit. Two % payrises labelled as cost of living rises seem to be the norm, except if you don’t work in the public sector you can’t strike to register your discontent. Kids don’t care, parents seem to care even less but continue to breed, police are useless etc. I cannot see any point at the moment in busting my hump to get by i really can’t. I’m not going to do anything stupid but i’m getting to the point where i could cheerfully fuck off and not come back. If you’re rich enough to afford a good accountant and have a business you can be as bent as a nine bob note and get away with corporate murder, if you have no money and 9 kids you can live the life of riley and foist your problems onto the state and whoever is unfortunate enough to be your neighbours safe in the knowledge that taxes from the likes of me will fund any shortfall you have. I don’t want much out of this life but what there is to get seems to be such hard work to get it’s really starting to make me question what the point is. That was more than half of my motivation for thinking about going abroad and enjoying what diabetic problem free time i have left and sorting out whatever needs sorting out as i go wherever that happens to be. If i drop down dead at 50 or go blind at 45 from retinopathy do i really want it to be here? I’m not trying to be morbid, just trying to work out what i want to do with the remaining best years of my life. I don’t have kids, i don’t have a wife or ex wife, got the dog and some family up north and a few mates and that’s about it …… not much of a reason to be here when the only person you really have to worry about is yourself. Maybe the bottle of red wine isn’t helping or maybe it’s inducing some kind of alcohol fuelled clarity i really don’t know and right at this moment in time i feel like i really don’t care. If it was just *blues* i’d not be so bothered, even mid life crisis i could cope with the same way i cope with other things but it’s more than that. I have a deep dissatisfaction with too many core things for it just to be that. I’m quite sure it’s not just me and i’m equally sure there are folks out there who are worse off than i am, but that’s of little consolation to be honest. I am very sure that this was not how i’d even vaguely planned things when i was thinking about what i wanted to do with myself. I rarely whinge about my "lot" in life but at the moment i’m feeling right at mental rock bottom because i can’t see any way out of it. Almost funny because from a physical perspective i’m in the best shape i’ve been in since well before being diagnosed. At no point was i warned that the better your physical state is the worse your mental one would become! If all this sounds familiar and it’s not just me then please do let me know otherwise i am begnning to think i’m going slowly barmy! I’m really in two minds whether to post this or not as i don’t want to sound like i’m moaning about nothing and i know it’s sod all to do with diabetes but i just need to get it off my chest. My downs are short lived but it seems that they are getting more frequent of late and that’s something that concerns me as i don’t believe they occur for no reason. Suggestions on the back of a postage stamp please, keep it short n sweet n simple. For now i’m going to finish this bottle of red and maybe start on the next one along with what i rolled earlier and probably pass out sometime later on and wake up in a better mood tomorrow. I am quite sure the thumping head will remind me with crystal clarity just what i did the night before the morning after. Patrick.

Response:

– Hide quoted text — Show quoted text – x-no-archive: yes "Milo Minderbender" wrote x-no-archive: yes "Alan" wrote I am quite sure the thumping head will remind me with crystal clarity just what i did the night before the morning after. Patrick. I’m sure it will:-) Replied elsewhere. See how you feel in 24 hours, with a red-free day tomorrow mate. Cheers, Alan, T2 d&e, Australia. Everything in Moderation – Except Laughter. Well that’s an unexpected bonus …. zero hangover. One more year is what i’m going to do, pay off some more stuff and make sure my diabetes is not going to throw any more crap my way. Postage stamp sized Go now! If you wait for a year, you’ll think *I am more comfortable, so I’ll wait another year* and so on. That’s what I did, I never went, and I am now a slightly bitter, regetful man in late middle-age, and it’s too late. A long time ago I knew a fellow who went across Europe as far as Turkey and back, with only a bed-roll and two changes of clothing. He worked his passage. You are better off than that. Milo Ahh but Milo ( Al) i should state that i’ve done a lot of travelling already, the only place i’ve never been is america. I’ve been pretty much everywhere else which is why i can say with great certainty that there are better places than here, or different if you prefer that to better. *better places* is why I think the quicker route is the one to take. I’m going to wait just a lil while longer whilst i sort out my finances but i will be going. Unless i find a woman, get her pregnant and get married in the next 12 months i can’t see anything stopping me. I sincerely hope that whatever you do, it works out well. Milo

Me too … if you get mega bored and cheesed off shall i drop past Melton and kidnap you on the way? I’ve had to finally admit defeat with ASD … i prefer the atmosphere here. I’m off in the bath, speak to you later on. Patrick/

Response:

– Hide quoted text — Show quoted text – x-no-archive: yes I am quite sure the thumping head will remind me with crystal clarity just what i did the night before the morning after. Patrick. I’m sure it will:-) Replied elsewhere. See how you feel in 24 hours, with a red-free day tomorrow mate. Cheers, Alan, T2 d&e, Australia. Remove weight and carbs to email. — Everything in Moderation – Except Laughter. Well that’s an unexpected bonus …. zero hangover. One more year is what i’m going to do, pay off some more stuff and make sure my diabetes is not going to throw any more crap my way. Postage stamp sized Go now! If you wait for a year, you’ll think *I am more comfortable, so I’ll wait another year* and so on. That’s what I did, I never went, and I am now a slightly bitter, regetful man in late middle-age, and it’s too late. A long time ago I knew a fellow who went across Europe as far as Turkey and back, with only a bed-roll and two changes of clothing. He worked his passage. You are better off than that. Milo

Ahh but Milo ( Al) i should state that i’ve done a lot of travelling already, the only place i’ve never been is america. I’ve been pretty much everywhere else which is why i can say with great certainty that there are better places than here, or different if you prefer that to better. I’m going to wait just a lil while longer whilst i sort out my finances but i will be going. Unless i find a woman, get her pregnant and get married in the next 12 months i can’t see anything stopping me.

Response:

– Hide quoted text — Show quoted text – Well that’s an unexpected bonus …. zero hangover. One more year is what i’m going to do, pay off some more stuff and make sure my diabetes is not going to throw any more crap my way. Glad to hear it. Now you have something to aim for. Enjoy your day – and your year. Cheers, Alan, T2 d&e, Australia. Remove weight and carbs to email. — Everything in Moderation – Except Laughter.

I felt so chipper this morning i even took a well aimed shot at some of those moaning minnies over in ASD. Makes my "problems" seem rather trivial when compared to the severe mental illness i see in that group I like my wine, it always clears my head for me. quote taken from http://maddox.xmission.com "how do you fu**ing people breathe*. Those with a darker sense of humour or a love of the deeply sarcastic might enjoy reading that page, it’s helped me get a smile back on my face more than once. Thank you for listening. ( all of you) Patrick

Response:

Well that’s an unexpected bonus …. zero hangover. One more year is what i’m going to do, pay off some more stuff and make sure my diabetes is not going to throw any more crap my way.

Glad to hear it. Now you have something to aim for. Enjoy your day – and your year. Cheers, Alan, T2 d&e, Australia. Remove weight and carbs to email. — Everything in Moderation – Except Laughter.

Response:

– Hide quoted text — Show quoted text – I am quite sure the thumping head will remind me with crystal clarity just what i did the night before the morning after. Patrick. I’m sure it will:-) Replied elsewhere. See how you feel in 24 hours, with a red-free day tomorrow mate. Cheers, Alan, T2 d&e, Australia. Remove weight and carbs to email. — Everything in Moderation – Except Laughter.

Well that’s an unexpected bonus …. zero hangover. One more year is what i’m going to do, pay off some more stuff and make sure my diabetes is not going to throw any more crap my way.

Response:

I am quite sure the thumping head will remind me with crystal clarity just what i did the night before the morning after. Patrick.

I’m sure it will:-) Replied elsewhere. See how you feel in 24 hours, with a red-free day tomorrow mate. Cheers, Alan, T2 d&e, Australia. Remove weight and carbs to email. — Everything in Moderation – Except Laughter.

Response:

<<<<<snipped I’m fed up. Plain and simple.

…now i’m going to finish this bottle of red and maybe start on the next one along ….

Go on lad spew it all out… and lest we forget – life really is pointless so you might as well make the most of it but seriously alcohol is a dangerous waste of time and money. Citizen D_M

Response:

I don’t want much out of this life but what there is to get seems to be such hard work to get it’s really starting to make me question what the point is.

Ah! One of the silent majority has broken his silence. A lot of people agree with you Patrick. The lunatics have taken over the asylum: honest folk who want only to do a fair day’s work for a fair day’s pay get the shitty end of the stick; people with no respect for themselves let alone anyone else keep up a constant barrage of low level crime, disorder, and selfish pig ignorance that the authorities collectively (not just the police) don’t take seriously; and we are surrounded by people with nothing to say who insist on saying it anyway – loudly! We really have lost the plot. A diagnosis of something like diabetes does encourage you to question these things; to realise you are on a treadmill, running to stand still. More and more often I find myself whistling the Monty Python tune: it’s my dated way of convincing myself that at least I know all the other buggers are mad even if they don’t. If you have an opportunity take yourself off to foreign lands, go for it. Let us know if you stumble across a civilised nation somewhere. Or maybe you’ll want to keep quiet about it in case the mad buggers follow you and fuck it up. — Tom (Type 2) Knowledge dispels fear! Affordable web hosting: http://www.syntaxinternet.co.uk

Response:

Short n sweet n simple it is. Sell your house and car, buy a motorhome, and go enjoy life across Europe. But keep in touch with us by using internet cafe’s, please.

Not one to put a downer on things But isnt it against the law, to drink and drive, all over europe…<g — Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com).

Response:

– Hide quoted text — Show quoted text – x-no-archive: yes "Milo Minderbender" wrote x-no-archive: yes "Milo Minderbender" wrote x-no-archive: yes "Alan" wrote I am quite sure the thumping head will remind me with crystal clarity just what i did the night before the morning after. Patrick. I’m sure it will:-) Replied elsewhere. See how you feel in 24 hours, with a red-free day tomorrow mate. Cheers, Alan, T2 d&e, Australia. Everything in Moderation – Except Laughter. Well that’s an unexpected bonus …. zero hangover. One more year is what i’m going to do, pay off some more stuff and make sure my diabetes is not going to throw any more crap my way. Postage stamp sized Go now! If you wait for a year, you’ll think *I am more comfortable, so I’ll wait another year* and so on. That’s what I did, I never went, and I am now a slightly bitter, regetful man in late middle-age, and it’s too late. A long time ago I knew a fellow who went across Europe as far as Turkey and back, with only a bed-roll and two changes of clothing. He worked his passage. You are better off than that. Milo Ahh but Milo ( Al) i should state that i’ve done a lot of travelling already, the only place i’ve never been is america. I’ve been pretty much everywhere else which is why i can say with great certainty that there are better places than here, or different if you prefer that to better. *better places* is why I think the quicker route is the one to take. I’m going to wait just a lil while longer whilst i sort out my finances but i will be going. Unless i find a woman, get her pregnant and get married in the next 12 months i can’t see anything stopping me. I sincerely hope that whatever you do, it works out well. Milo Me too … if you get mega bored and cheesed off shall i drop past Melton and kidnap you on the way? Kidnapped by a young man? I should be so lucky lol I’ve had to finally admit defeat with ASD … i prefer the atmosphere here. So do many others prefer it here – definitely me, anyway. Milo I’m off in the bath, speak to you later on. Patrick/

I like the fact that nothing is off topic as long as it’s approached sensibly and is relevant to discussion. I also like the fact that there never appears to be any one person who controls the group. Common sense is what prevails and that to me is far preferable than having someone elses sense rammed down my throat. I don’t need to run a killfile to read / post here and that i do prefer. Patrick.

Response:

– Hide quoted text — Show quoted text – I don’t want much out of this life but what there is to get seems to be such hard work to get it’s really starting to make me question what the point is. Ah! One of the silent majority has broken his silence. A lot of people agree with you Patrick. The lunatics have taken over the asylum: honest folk who want only to do a fair day’s work for a fair day’s pay get the shitty end of the stick; people with no respect for themselves let alone anyone else keep up a constant barrage of low level crime, disorder, and selfish pig ignorance that the authorities collectively (not just the police) don’t take seriously; and we are surrounded by people with nothing to say who insist on saying it anyway – loudly! We really have lost the plot.

Don’t get me wrong, on most things i’m ok .. happy enough, etc etc but i am convinced there is more to it. Seeing as i don’t have a wife, no dependants and no plans to get myself any i might as well go and enjoy myself and stop kidding around that i am a part of or want to be a part of the great rat race etc. A diagnosis of something like diabetes does encourage you to question these things; to realise you are on a treadmill, running to stand still. More and more often I find myself whistling the Monty Python tune: it’s my dated way of convincing myself that at least I know all the other buggers are mad even if they don’t.

I’m with you, my mobile rings to the tune of "flying circus". If you have an opportunity take yourself off to foreign lands, go for it. Let us know if you stumble across a civilised nation somewhere. Or maybe you’ll want to keep quiet about it in case the mad buggers follow you and fuck it up.

I’m thinking a while just working around europe until i either get fed up and come "home" or just settle somewhere along the way might be no bad thing. — Tom (Type 2) Knowledge dispels fear! Affordable web hosting: http://www.syntaxinternet.co.uk

– Patrick / Fester Type 1 Diabetic. Dx’d 1993. On 26u Lantus and whatever Novorapid my meter says i need.

Response:

Posted in Running To Stand Still | No Comments » |

Tori Amos covers U2

Question:

- Hide quoted text — Show quoted text – You can catch the audio of the Tori Amos’s version of RTSS at http://www.u2exit.com @ Red Rocks…she sings Running To Stand Still…first time she ever covered the song. -DWalt Good god. I like most U2 covers but talk about a butcher job. I thought it was an excellent cover!!

Yeah, I was diggin it, too! Later Kelly — "Every rock star should remember that they came out of the audience and climbed up on the stage" – Bono, 11/30/01 Check out my website: http://www.geocities.com/kellykell9/Home.html

Response:

– Hide quoted text — Show quoted text – You can catch the audio of the Tori Amos’s version of RTSS at http://www.u2exit.com @ Red Rocks…she sings Running To Stand Still…first time she ever covered the song. -DWalt Good god. I like most U2 covers but talk about a butcher job.

I thought it was an excellent cover!!

Response:

You can catch the audio of the Tori Amos’s version of RTSS at http://www.u2exit.com @ Red Rocks…she sings Running To Stand Still…first time she ever covered the song. -DWalt

Good god. I like most U2 covers but talk about a butcher job.

Response:

You can catch the audio of the Tori Amos’s version of RTSS at http://www.u2exit.com

– Hide quoted text — Show quoted text – @ Red Rocks…she sings Running To Stand Still…first time she ever covered the song. -DWalt

Response:

@ Red Rocks…she sings Running To Stand Still…first time she ever covered the song. -DWalt

Response:

Posted in Running To Stand Still | No Comments » |

u2 weekend

Question:

anyone watch the three concerts on c4 over the weekend. i am a huge u2 fan but have to say that popmart was awful! the sound quality of zoo tv wasnt great either but they sang running to stand still so all is well

Response:

Think you might need to think about investing in a new TV mate!

: anyone watch the three concerts on c4 over the weekend. i am a huge u2 fan : but have to say that popmart was awful! the sound quality of zoo tv wasnt : great either but they sang running to stand still so all is well : :

Response:

Posted in Running To Stand Still | No Comments » |

Plaquenil

Question:

I have not been diagnosed with lupus yet, but my rheum. has asked me if I would like to try Plaquenil to see if it helps me with the severe pain in my joints. The doctor told me to get my eyes examined before I start the Plaquenil. So I will start the drug next weekend. Could anyone who has taken the drug tell me your experience with it when you first started?

Response:

Hi Lynn I started plaquenil and I have to say it helped me fairly fast. I had my eyes checked and that is a must!!!!! It takes sometimes a few weeks to really see the effect of plaquenil. I did in less than 4 weeks, unfortunately I started to get the itches. Then docs said OH it isn’t a reaction to that, but it developed into hives. so I can not take a drug that DID INDEED, help me. There is a lot of people here on plaq, so I am sure they can tell you more. But mostly when you first start it, hang in there, it does indeed take around 6 weeks to see any benefit. I hope sooner for you. IF you find that while starting it, and you don’t feel better, ask your doctor for something to use UNTIL it kicks in so to speak. Are you on cortisone or anything like vioxx, or celebrex or naprosyn for the joint pain too?? Hope it helps janers PS and welcome to the NG and post anytime, anything and about anything.

Response:

I started taking Plaq in Early May and it is now helping me along with taking Celebrex it has helped. My Ruemy increased my dose to 2x a day and that has helped also. My first reaction was that it made me sleepy a little so I took it at night but now that I am used t it I do not have that side effect. So hang in there..:o) "Lynn J." <cr…@cox.net> wrote in message

news:68hrhukmg5oeavt7db62s841sia94e85d3@4ax.com… – Hide quoted text — Show quoted text -> I have not been diagnosed with lupus yet, but my rheum. has asked me > if I would like to try Plaquenil to see if it helps me with the severe > pain in my joints. The doctor told me to get my eyes examined before > I start the Plaquenil. So I will start the drug next weekend. Could > anyone who has taken the drug tell me your experience with it when you > first started?

Response:

Lynn, I have been on the plaquenil since my dx in 1999. It took a while for it to show any improvement but it has indeed helped. More obvious if you stop taking. Have had my eyes tested regularly and have had no problems. Hope that it helps you. But don’t count on it working right away. Welcome to the group. Sherry still in TX and on her mom’s computer

Response:

I take plaq.but all its really doing it tapering me off my pred.

Response:

I am only on Ultram. I can not take any anti inflammatory meds because they made my stomach bleed and made me anemic. I tried Vioxx but it didn’t agree with my stomach. I can’t take celebrex because I am allergic to sulfa drugs. So I was very excited when my doctor asked if I wanted to try Plaquenil. I can’t wait to try it. I have been suffering for 2 years with this joint pain. It is in both hands, both knees, and both hips. My eye appointment is next Friday, so I will start next weekend. He said to take 2 tablets of 200mg each day. Do you think I should start with one tablet for a while and then 2? On Sat, 29 Jun 2002 11:47:33 -0400, "Janers" <rojak…@bright.net> wrote: – Hide quoted text — Show quoted text ->Hi Lynn >I started plaquenil and I have to say it helped me fairly fast. I had >my eyes checked and that is a must!!!!! >It takes sometimes a few weeks to really see the effect of plaquenil. I >did in less than 4 weeks, unfortunately I started to get the itches. >Then docs said OH it isn’t a reaction to that, but it developed into >hives. so I can not take a drug that DID INDEED, help me. >There is a lot of people here on plaq, so I am sure they can tell you >more. But mostly when you first start it, hang in there, it does indeed >take around 6 weeks to see any benefit. I hope sooner for you. IF you >find that while starting it, and you don’t feel better, ask your doctor >for something to use UNTIL it kicks in so to speak. Are you on >cortisone or anything like vioxx, or celebrex or naprosyn for the joint >pain too?? >Hope it helps >janers >PS and welcome to the NG and post anytime, anything and about anything.

Response:

On Sat, 29 Jun 2002 14:12:27 GMT, Lynn J. <cr…@cox.net> wrote: >I start the Plaquenil. So I will start the drug next weekend. Could >anyone who has taken the drug tell me your experience with it when you >first started?

I too take Ultram for the same reasons you describe. Plaquenil has been very helpful to me. Within 3 weeks my daily fevers were down to about once a month. Migraines have lessened significantly over the months as well. I strongly believe that plaquenil has kept me out of a danger zone for some time. Not symptom free – but certainly much better off than I was. Good luck! It isn’t for everyone, but it’s usually an innocuous drug that can ease our pain and fatigue significantly. I think it’s great that the doc is willing to try this despite no dx. I asked my doc to "humour" me on this one and she did… now she’s thankful that she did as she sees how important it’s been to me. you might read more of my experience with UCTD on my website if you’re interested. Sounds like we’ve taken some similar paths. blessed be, kcat KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq30.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’

Response:

On Sat, 29 Jun 2002 14:00:48 -0400 (EDT), fEeL_a_Th…@webtv.net (ChRiStIe AkA tHe QueEnY oF Pa) wrote: >I take plaq.but all its really doing it tapering me off my pred.

which in itself should be considered a vast improvement. Pred definitely has more long-term deliterious effects than plaquenil does.

Response:

I would do like the doctor said… I am glad you are on the ultram also. That can help too. Oh and there is a new drug called bextra. I have a friend who has bleeding problems and ulcers of the bowel. She is on it with nexium and it is working good. So maybe there is hope with that drug. Ask about it…She was told like you, not to use those meds so IF you ever need something more, keep that in mind and consult your doctor. hugs’ janers

Response:

Hello Lynn, I have been taking plaquenil for over a year and it is generally termed the lessor of all evils in alternitive treatments. Eyes should be examined on a regualar 6 month basis; i believe what is called a field vission test is necessary. It took just over 6 months for the full benefits of the medicine to be felt. I am just beginning to pull through a wicked flare. Been layed up in bed all week. He upped my plaquenil to 3 a day (200mg x 3) and hope this will help as the swelling has commenced once again. Hope this helps you. Always, cloud "Lynn J." <cr…@cox.net> wrote in message

Response:

Thanks. I will keep that drug in mind if the Plaquenil doesn’t work. On Sat, 29 Jun 2002 22:12:45 -0400, "Janers" <rojak…@bright.net> wrote: – Hide quoted text — Show quoted text ->I would do like the doctor said… >I am glad you are on the ultram also. That can help too. >Oh and there is a new drug called bextra. I have a friend who has >bleeding problems and ulcers of the bowel. She is on it with nexium and >it is working good. So maybe there is hope with that drug. >Ask about it…She was told like you, not to use those meds so IF you >ever need something more, keep that in mind and consult your doctor. >hugs’ >janers

Response:

I have been having joint pain for 2 years. My doctor says that he doesn’t think I have lupus, just osteo. But I have an ANA of 1:320 and a rash on my face. I was shocked last week when I went for my 6 month visit and he said he wanted me to try Plaquenil. I think he really thinks that I have lupus, but he wants to make sure before he says definitely. I don’t care what the diagnosis is, I want relief from the pain. I have already bought the Plaquenil. I can’t wait to start it after my eye exam. My ins. only covers the name brand, not the generic. I am glad about that. – Hide quoted text — Show quoted text -On Sat, 29 Jun 2002 18:15:16 -0500, KC <kcdoc…@ghg.net> wrote: >On Sat, 29 Jun 2002 14:12:27 GMT, Lynn J. <cr…@cox.net> wrote: >>I start the Plaquenil. So I will start the drug next weekend. Could >>anyone who has taken the drug tell me your experience with it when you >>first started? >I too take Ultram for the same reasons you describe. >Plaquenil has been very helpful to me. Within 3 weeks my daily fevers >were down to about once a month. Migraines have lessened >significantly over the months as well. I strongly believe that >plaquenil has kept me out of a danger zone for some time. Not symptom >free – but certainly much better off than I was. Good luck! It isn’t >for everyone, but it’s usually an innocuous drug that can ease our >pain and fatigue significantly. I think it’s great that the doc is >willing to try this despite no dx. I asked my doc to "humour" me on >this one and she did… now she’s thankful that she did as she sees >how important it’s been to me. >you might read more of my experience with UCTD on my website if you’re >interested. Sounds like we’ve taken some similar paths. >blessed be, >kcat >KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions >http://www.ghg.net/schwerpt/mypage.htm >http://www.ghg.net/schwerpt/aslfaq30.htm > ("`-”-/").___..–”"`-._ > (`6_ 6 ) `-. ( ).`-.__.’`) > (_Y_.)’ ._ ) `._ `. “-..-” > _..`–’_..-_/ /–’_.’ ,’ >(()),-” (()),’ (((.-’

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Hi, Lynn. I have mild lupus compared to most people on this newsgroup, but my rheumatologist put me on Plaquenil (for joint pain, mostly) about 1 1/2 years ago. Within a month or so I felt better in ways I hadn’t in years. I guess I didn’t know how lousy I really felt until the cloud was lifted. Note: My ophthalmologist insists that my eyes are fine, but I do not like the increasingly blurry vision I have. He says "Welcome to your 40s." Duh. Welcome to the group! Cathi – Hide quoted text — Show quoted text -Lynn J. <cr…@cox.net> wrote in message <news:68hrhukmg5oeavt7db62s841sia94e85d3@4ax.com>… > I have not been diagnosed with lupus yet, but my rheum. has asked me > if I would like to try Plaquenil to see if it helps me with the severe > pain in my joints. The doctor told me to get my eyes examined before > I start the Plaquenil. So I will start the drug next weekend. Could > anyone who has taken the drug tell me your experience with it when you > first started?

Response:

Hi Lynn I started plaquenil back in february (400mg) this year a couple of weeks before I started the high dose prednisone. The main thing I noticed with plaquenil was blurry eyes for a little while (then that became prednisone’s fault) and nausea which settled down after a week. Four and a half months later my fevers and rashes have settled down, less of the horrible fatigue and the joints are still swollen a little but not sore just stiff sometimes. I am quite happy to be on it that’s for sure, and far happier to be on it than the prednisone, which I hope in another few months, will be off almost completely. I was worried when I read all the possible side effects of plaquenil, but rather be on it and monitored than go back to all that joint pain etc disaster, was disppointed it seemed to take some months to really kick in, it’s effect on things seemed slow and subtle in happening, but glad I’ve stuck it out. It’s not cheap but it is a medication I can see me being happy to be on long term to keep me stable. Just give it a good chance to work! And good luck! Let us know how you go. Sal "Lynn J." <cr…@cox.net> wrote in message

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I am so disappointed. I had my eye exam today before starting the Plaquenil. I wanted to start the Plaquenil tonight but the eye doctor wants me to wait until I have the visual field test. It is scheduled for Tuesday. I wish the visual field could have been done today but the eye doctor said that it must be done at the main clinic and I was at a satellite clinic. I usually go to the main clinic for my eye exams but there were no openings until August. I feel like I’ve been waiting forever. I just want relief from this pain and I am praying that Plaquenil helps me. On 30 Jun 2002 19:20:26 -0700, cwhite0…@fsi.net (cwhite0714) wrote: – Hide quoted text — Show quoted text ->Hi, Lynn. >I have mild lupus compared to most people on this newsgroup, but my >rheumatologist put me on Plaquenil (for joint pain, mostly) about 1 >1/2 years ago. Within a month or so I felt better in ways I hadn’t in >years. I guess I didn’t know how lousy I really felt until the cloud >was lifted. >Note: My ophthalmologist insists that my eyes are fine, but I do not >like the increasingly blurry vision I have. He says "Welcome to your >40s." Duh. >Welcome to the group! >Cathi >Lynn J. <cr…@cox.net> wrote in message <news:68hrhukmg5oeavt7db62s841sia94e85d3@4ax.com>… >> I have not been diagnosed with lupus yet, but my rheum. has asked me >> if I would like to try Plaquenil to see if it helps me with the severe >> pain in my joints. The doctor told me to get my eyes examined before >> I start the Plaquenil. So I will start the drug next weekend. Could >> anyone who has taken the drug tell me your experience with it when you >> first started?

Response:

On Sat, 06 Jul 2002 04:22:46 GMT, Lynn J. <cr…@cox.net> wrote: >I am so disappointed.

I’m sorry to hear this, Lynn. I truly doubt that one weeks worth of plaquenil will alter the results of the field test. My doc told me to get my baseline within the first couple of months of starting it. But if your doc is dead set on you not starting it just yet then I understand and I’m not trying to make you take my advice vs. his. Just wish you could get started soon. I know i’ve said this before but within 3 weeks things were changing for me and since I did not believe that to be possible at the time I am 99.9% certain that it was not a matter of a placebo effect. Wishing the best for you and that you get relief very soon. blessed be, kcat

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This is such a supportive group. Thanks for your response. My rheum. didn’t say to wait on the field test, just the eye doctor said to wait. She found something weird with my eyes and said she didn’t have access to my records because all my records are at the main clinic. I can’t remember exactly what she said that was strange about my eyes but she said it’s alright if my eyes have always been like that, but if it’s something new, then we will check further. My appointment for the field test is Tuesday, so I guess I can wait a few more days. I just wanted to start the med on the weekend because I have a very bad stomach and if it makes me sick I won’t be at work. I work full time. – Hide quoted text — Show quoted text -On Sat, 06 Jul 2002 12:29:35 -0500, KC <kcdoc…@ghg.net> wrote: >On Sat, 06 Jul 2002 04:22:46 GMT, Lynn J. <cr…@cox.net> wrote: >>I am so disappointed. >I’m sorry to hear this, Lynn. >I truly doubt that one weeks worth of plaquenil will alter the results >of the field test. My doc told me to get my baseline within the first >couple of months of starting it. >But if your doc is dead set on you not starting it just yet then I >understand and I’m not trying to make you take my advice vs. his. >Just wish you could get started soon. I know i’ve said this before >but within 3 weeks things were changing for me and since I did not >believe that to be possible at the time I am 99.9% certain that it was >not a matter of a placebo effect. >Wishing the best for you and that you get relief very soon. >blessed be, >kcat

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Well, you could start next weekend. I know that is another week away but I know I tend to react strangely to many meds and I think I’d prefer to start knowing I had a few days to get acclimated to it. Of course I’m giving you this great advice and then picking up new glasses on Monday and leaving Thursday for Tennessee. If I have a problem I will not wear them driving. Everybody (except the optician) keeps telling me 3-5 days of nausea from the progressive lenses. Yep, pupil intelligent with 70 windows of vision in each lens. If I can’t adjust in a day or so I’ll take them off until I return. I’ll just have to cope with my old glasses hanging around my neck for another week or so. Bev "Lynn J." <cr…@cox.net> wrote in message

news:1fqeiu8hkmg1h6mglm6tukpgpnn2ot4m1f@4ax.com… – Hide quoted text — Show quoted text -> This is such a supportive group. Thanks for your response. My rheum. > didn’t say to wait on the field test, just the eye doctor said to > wait. She found something weird with my eyes and said she didn’t have > access to my records because all my records are at the main clinic. I > can’t remember exactly what she said that was strange about my eyes > but she said it’s alright if my eyes have always been like that, but > if it’s something new, then we will check further. My appointment for > the field test is Tuesday, so I guess I can wait a few more days. I > just wanted to start the med on the weekend because I have a very bad > stomach and if it makes me sick I won’t be at work. I work full time. > On Sat, 06 Jul 2002 12:29:35 -0500, KC <kcdoc…@ghg.net> wrote: > >On Sat, 06 Jul 2002 04:22:46 GMT, Lynn J. <cr…@cox.net> wrote: > >>I am so disappointed. > >I’m sorry to hear this, Lynn. > >I truly doubt that one weeks worth of plaquenil will alter the results > >of the field test. My doc told me to get my baseline within the first > >couple of months of starting it. > >But if your doc is dead set on you not starting it just yet then I > >understand and I’m not trying to make you take my advice vs. his. > >Just wish you could get started soon. I know i’ve said this before > >but within 3 weeks things were changing for me and since I did not > >believe that to be possible at the time I am 99.9% certain that it was > >not a matter of a placebo effect. > >Wishing the best for you and that you get relief very soon. > >blessed be, > >kcat

Response:

KC <kcdoc…@ghg.net> wrote in message <news:j5aeiusgasecgvp73knc6fnq6ldph4909c@4ax.com>… > On Sat, 06 Jul 2002 04:22:46 GMT, Lynn J. <cr…@cox.net> wrote: > >I am so disappointed. > I’m sorry to hear this, Lynn.

I’m sorry too, Lynn. I’m a little scared, though, to see that your eye doctor is so serious about the visual field test. If I’m remembering correctly, that’s the one with the grid and the red dot. My ophthalmologist insists it isn’t necessary. Given my increased blurring (which he also ignores), I don’t like his cavalier attitude about this test. Maybe I should go ahead and change eye doctors. It’s such a stress for me to change, and what if I don’t like the next one either? <snip> > My doc told me to get my baseline within the first > couple of months of starting it.

My rheumatologist wanted me to get eye doctor’s approval before starting, but he’s been comfortable with my moving the 6 months visual exam to 5 or 7 or whatever.

Response:

I think the reason the doctor is so serious about the test is because I go to doctors that are part of a huge multi specialty group. My rheum told me that the whole ophthalmology department knows what to do when a patient is sent to them and is on plaquenil. He said all of his patients that are on plaquenil are followed by the ophthalmology department. The eye doctor I saw last Friday was a doctor I had never seen before. My regular eye doctor didn’t have any appointments until August. I just hate the thought of getting my eyes dilated again. I can’t see well enough to drive afterwards, so my husband has to bring me. The more I think about it, I get angry thinking that my rheum waited 2 years for me to try Plaquenil. I think he should have tried it sooner but I guess he thought that all I had was osteoarthritis. He still hasn’t said any other diagnosis. You might want to try seeing another eye doctor. I feel you should get your eyes checked every 6 months. Take care, Lynn On 6 Jul 2002 18:09:20 -0700, cwhite0…@fsi.net (cwhite0714) wrote: – Hide quoted text — Show quoted text ->KC <kcdoc…@ghg.net> wrote in message <news:j5aeiusgasecgvp73knc6fnq6ldph4909c@4ax.com>… >> On Sat, 06 Jul 2002 04:22:46 GMT, Lynn J. <cr…@cox.net> wrote: >> >I am so disappointed. >> I’m sorry to hear this, Lynn. >I’m sorry too, Lynn. >I’m a little scared, though, to see that your eye doctor is so serious >about the visual field test. If I’m remembering correctly, that’s the >one with the grid and the red dot. My ophthalmologist insists it isn’t >necessary. Given my increased blurring (which he also ignores), I >don’t like his cavalier attitude about this test. Maybe I should go >ahead and change eye doctors. It’s such a stress for me to change, and >what if I don’t like the next one either? ><snip> >> My doc told me to get my baseline within the first >> couple of months of starting it. >My rheumatologist wanted me to get eye doctor’s approval before >starting, but he’s been comfortable with my moving the 6 months visual >exam to 5 or 7 or whatever.

Response:

Hi Lynn Sorry to hear about the disappointment. On the up side I guess you could say that it is good to have docs that are serious about their tests, if that makes sense. Not much consolation I know … I found I had increasing blurry vision last year, which in retrospect was one of the first lupus flare signs for me. I had just a regular optometrist check my eyes before I went on it, but the first ophthalmologist appointment is yet to be booked, 4 months on plaquenil now. Where I am the doc is not so worried, call it degrees of relativity! Gee I don’t know, all I know is I’d be damned without the stuff and I was thinking at the time *risk anything just to get ahold of the lupus*. I’ve been far more worried about some of the other meds’ side effects I been taking. For me, plaquenil made me queasy for a few days, but I figured well it was a *positive* sign it was happening I hope you get some better news soon! It’s a tough wait! Sal – Hide quoted text — Show quoted text -> I am so disappointed. I had my eye exam today before starting the > Plaquenil. I wanted to start the Plaquenil tonight but the eye doctor > wants me to wait until I have the visual field test. It is scheduled > for Tuesday. I wish the visual field could have been done today but > the eye doctor said that it must be done at the main clinic and I was > at a satellite clinic. I usually go to the main clinic for my eye > exams but there were no openings until August. I feel like I’ve been > waiting forever. I just want relief from this pain and I am praying > that Plaquenil helps me. > On 30 Jun 2002 19:20:26 -0700, cwhite0…@fsi.net (cwhite0714) wrote: > >Hi, Lynn. > >I have mild lupus compared to most people on this newsgroup, but my > >rheumatologist put me on Plaquenil (for joint pain, mostly) about 1 > >1/2 years ago. Within a month or so I felt better in ways I hadn’t in > >years. I guess I didn’t know how lousy I really felt until the cloud > >was lifted. > >Note: My ophthalmologist insists that my eyes are fine, but I do not > >like the increasingly blurry vision I have. He says "Welcome to your > >40s." Duh. > >Welcome to the group! > >Cathi > >Lynn J. <cr…@cox.net> wrote in message

<news:68hrhukmg5oeavt7db62s841sia94e85d3@4ax.com>… – Hide quoted text — Show quoted text -> >> I have not been diagnosed with lupus yet, but my rheum. has asked me > >> if I would like to try Plaquenil to see if it helps me with the severe > >> pain in my joints. The doctor told me to get my eyes examined before > >> I start the Plaquenil. So I will start the drug next weekend. Could > >> anyone who has taken the drug tell me your experience with it when you > >> first started?

Response:

Lynn, There is one big thing you can do to avoid or minimize stomach problems with Plaquinel – Always take it with a meal. ‘2 times a day’ can be with breakfast & dinner – they don’t have to be exactly 12 hours apart. I’ve now taken Plaq 2 separate times, once for 2.5 years, now for 2 years so far. When I used to take it at bedtime I had some stomach pain that could have been Plaq, Vioxx, guaifenesin, . . . Now I take all that with a meal only.– Nancy F – Hide quoted text — Show quoted text -"Lynn J." <cr…@cox.net> wrote in message >> I > just wanted to start the med on the weekend because I have a very bad > stomach and if it makes me sick I won’t be at work. I work full time.

Response:

On Sat, 06 Jul 2002 21:50:42 GMT, Lynn J. <cr…@cox.net> wrote: >just wanted to start the med on the weekend because I have a very bad >stomach and if it makes me sick I won’t be at work. I work full time.

I understand. I didn’t have much trouble with it as long as I took it with a little food. nothing big – but say bread and butter or some other light meal. I still get a tad nauseated now if I take it on an empty stomach. but…. that’s taking Plaquenil, Ditropan, hormones and Ultram all at one time. so who’s to know which is really causing the nausea. All I need is an ensure and that’s enough to buffer it and I’ve never been violently ill with any of these meds – not even in the first doses. so hopefully you’ll be okay to try it. What sort of dose are you going to be taking (I’m sure you said elsewhere but…) If you are taking one in the a.m. and one in the p.m. then try taking the p.m. dose first after the eye doc says you can. that way if you do have any nausea you’ll be able to sleep through most of it. if it goes well than you can probably go ahead with the next day’s a.m. dose. just a thought.

Response:

On 6 Jul 2002 18:09:20 -0700, cwhite0…@fsi.net (cwhite0714) wrote: >KC <kcdoc…@ghg.net> wrote in message <news:j5aeiusgasecgvp73knc6fnq6ldph4909c@4ax.com>… >> On Sat, 06 Jul 2002 04:22:46 GMT, Lynn J. <cr…@cox.net> wrote: >> >I am so disappointed. >> I’m sorry to hear this, Lynn. >I’m sorry too, Lynn. >I’m a little scared, though, to see that your eye doctor is so serious >about the visual field test. If I’m remembering correctly, that’s the >one with the grid and the red dot. My ophthalmologist insists it isn’t >necessary.

errrrrr… might I suggest a new opth. sorry but IMO this is the more important test. ideally your eyes might show other problems before a poor field test. But I don’t think any eye doc should rely on that as an indicator that all is well. the thing is- the doc is ignoring the fact (from what I’m hearing) that lupus itself can cause eye damage that may be more subtle and also detectable by field test. Either demand it or change docs. That’s my opinion. you should get the field test at least once a year as long as your other tests do not show any changes. It may be easier to tell this doc that you would be more comfortable if you could get the test done and since you’re paying him than that shouldn’t be an issue! There’s no logic for *not* doing it and plenty of logic for doing it – if for no other reason than to set your mind at ease. MHO of course, kcat KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq30.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’

Response:

Thanks. I will take it with a meal. On Sun, 7 Jul 2002 12:09:26 -0700, "Nancy" <fnew…@surfbest.net> wrote: – Hide quoted text — Show quoted text ->Lynn, > There is one big thing you can do to avoid or minimize stomach problems >with Plaquinel – Always take it with a meal. ‘2 times a day’ can be with >breakfast & dinner – they don’t have to be exactly 12 hours apart. I’ve now >taken Plaq 2 separate times, once for 2.5 years, now for 2 years so far. >When I used to take it at bedtime I had some stomach pain that could have >been Plaq, Vioxx, guaifenesin, . . . Now I take all that with a meal only.– >Nancy F >"Lynn J." <cr…@cox.net> wrote in message >>> I >> just wanted to start the med on the weekend because I have a very bad >> stomach and if it makes me sick I won’t be at work. I work full time.

Response:

One thing my rheumy emphasized to me was that the generic Hydroxychloroquine was not as effective as Plaquenil. I know that places a financial burden on folks, especially if they don’t have prescription coverage, but I do notice a differenc, personally, in pain reduction with regulation Plaquenil. Your mileage may vary.

Response:

On 20 Feb 2001 03:43:31 GMT, oriolead…@aol.com (Oriole Adams) wrote: >One thing my rheumy emphasized to me was that the generic Hydroxychloroquine >was not as effective as Plaquenil. I know that places a financial burden on >folks, especially if they don’t have prescription coverage, but I do notice a >differenc, personally, in pain reduction with regulation Plaquenil. Your >mileage may vary.

yup – if you are on generic and find that nothing has changed it might be worth switching to brand name. I’ve done well on brand name but every *body* is unique so you have to sometimes test these things out. my e.g. is that generic vicodin or Lortab do nothing for me – but brand name works well. And I’ve had one doctor who would not even prescribe generic pain killers for this reason – he found that most generic vicodin is just not reliable. But as with all things as Oriole said, YMMV. good luck with everything. *********************************** KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’

Response:

Plaquenil can be helpful with joint problems. My daughter tried this first but had to quit due to an allergic reaction. She later tried Vioxx but found it not to be helpful enough alone. At this time she takes Methotrexate with some very good results. Sandra

Response:

Thankyou everyone for being so helpful, KCat your comments really helped. I had the baseline test first before the Doctor gave me the Plaquenil and also a chart that I have to look at daily. I suppose this Lupus thing never goes away, wish wish? My flare ups are quite sore at the moment and I put that down to my Mum in England has been taken very ill and I fly back next week for 5 weeks to be with her. They say stress plays a big part in flare ups. I have a great dermatologist who has gone over it all with me and finding this group was a boon. Carol "goodwin" <good…@charter.net> wrote in message

news:t91pr8375ptvda@corp.supernews.com… – Hide quoted text — Show quoted text -> I was diagnosed with Subcutaneous Lupus or Discoid Lupus at Christmas, and > for that the dermatologist has Plaquenil , 200 mg twice a day, that is the > generic Hydroxychloroquine, has anyone else had this, I haven’t yet started > the medication as I was unsure of it but the pains in my hands and hips are > really quite painful. Any help would be greatly appreciated. > Carol

Response:

On Mon, 19 Feb 2001 09:11:51 -0700, George Parton <gepar…@earthlink.net> wrote: >I wonder if we have an immunity to malaria from taking this stuff.??

I think I recall hearing "no" to this question – but it would be interesting to know for sure.. *********************************** KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’

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On Mon, 19 Feb 2001 09:11:51 -0700, George Parton <gepar…@earthlink.net> wrote: >I have been taking Hydroxychloroquine, the generic form for about 3 years. >During that period I have had some good times and some bad times. I take it >in blind faith because my doctor says it is important. It is one of those >things we must take for maintenance. >I wonder if we have an immunity to malaria from taking this stuff.?? >George

George makes a good point – Plaquenil isn’t just an ameliorative – it is actually disease modifying for most people. That is it can potentially stave off flares and worse symptoms even if it doesn’t greatly impact pain levels. *********************************** KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’

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"goodwin" <good…@charter.net> wrote in message

news:t91pr8375ptvda@corp.supernews.com… > I was diagnosed with Subcutaneous Lupus or Discoid Lupus at Christmas, and > for that the dermatologist has Plaquenil , 200 mg twice a day, that is the > generic Hydroxychloroquine, has anyone else had this, I haven’t yet started > the medication as I was unsure of it but the pains in my hands and hips are > really quite painful. Any help would be greatly appreciated. > Carol

I’ve been taking it for many years – it *does* help, even though it takes a while to get working. I’ve recently had my dosage doubled to 400 mgs a day, and had a few problems getting used to the higher dose. BUT – it helps, and that’s what counts. Judith (DIHL!)

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I have been taking Hydroxychloroquine, the generic form for about 3 years. During that period I have had some good times and some bad times. I take it in blind faith because my doctor says it is important. It is one of those things we must take for maintenance. I wonder if we have an immunity to malaria from taking this stuff.?? George – Hide quoted text — Show quoted text -goodwin wrote: > I was diagnosed with Subcutaneous Lupus or Discoid Lupus at Christmas, and > for that the dermatologist has Plaquenil , 200 mg twice a day, that is the > generic Hydroxychloroquine, has anyone else had this, I haven’t yet started > the medication as I was unsure of it but the pains in my hands and hips are > really quite painful. Any help would be greatly appreciated. > Carol

Response:

On Mon, 19 Feb 2001 04:23:54 -0500, "goodwin" <good…@charter.net> wrote: >I was diagnosed with Subcutaneous Lupus or Discoid Lupus at Christmas, and >for that the dermatologist has Plaquenil , 200 mg twice a day, that is the >generic Hydroxychloroquine, has anyone else had this, I haven’t yet started >the medication as I was unsure of it but the pains in my hands and hips are >really quite painful. Any help would be greatly appreciated. >Carol

HI Carol. Plaquenil began making an impact on me w/in 3 weeks – daily headaches I’d had for 2 years went away. I still get them now and then (once or twice a month) but not day in and day out as it was. That was one of the most noticeable changes. I’ve been on it over a year now and believe that it and Ultram keep my joint pain to a minimum. Some days (once a month due to weather or hormones) nothing helps but Lortab. And plaquenil doesn’t do much for migraines. But it sure seems to have helped put me into a chemical remission. it takes up to 6 months to reach full efficacy. But positive effects can be seen earlier in many people. Do not expect it to help immediately – you’ll have to give it some time. I had *very* mild nausea with the first couple of doses, easily handled with a light snack. No other side effects. You do have to get your eye’s checked regularly while on plaquenil. There is a rare (but not unheard of) side effect of damage to the retina (specifically the macula) due to plaquenil but it is *usually* a result of higher doses over a period of time (though not always.) You should go see an optometrist at the very least who knows what their doing, but opthamalogists are recommended. Get a baseline macula test done (they simply take a picture of the retina) and a baseline field vision test. Most of the time only an opthamologist can do the field test – while the macula test can be done by an optometrist. But you need to get the baseline now – within the first 3 months of being on the med so that they can look for changes over time and catch any early response. As I said, this is a rare problem (statistically speaking). You’ll hear more about it on groups like these because we tend to be the more vocal and sometimes "sicker" lupies than the avg. it is well worth trying to see if it will ease the joint pain and fatigue – fatigue is another thing that has greatly diminished for me in the last year. And that’s coming from someone who had been napping daily for 4 years, falling asleep at the wheel, etc. take care and HTH, *********************************** KCat – I am not a medical professional. The contents of this post are based soley on my experiences and opinions http://www.ghg.net/schwerpt/mypage.htm http://www.ghg.net/schwerpt/aslfaq20.htm ("`-”-/").___..–”"`-._ (`6_ 6 ) `-. ( ).`-.__.’`) (_Y_.)’ ._ ) `._ `. “-..-” _..`–’_..-_/ /–’_.’ ,’ (()),-” (()),’ (((.-’

Response:

i’ve been taking plaquenil for almost two years. it really hasn’t done anything for pain for me, but it has settled something down. I can’t really describe it but i do feel it’s doing something good. Only not helping my pain. Also though I have FMS so any pain I do have seems maginfied 100 fold. Lori SAppl38220 <sappl38…@aol.com> wrote in message

news:20010219075037.08821.00001749@ng-co1.aol.com… – Hide quoted text — Show quoted text -> >Plaquenil , 200 mg twice a day, that is the > >generic Hydroxychloroquine, has anyone else had this, > Yes, that is what I have been taking for 5 months. It has helped tremendously > with pain and the flares have gotten better too. I think one of the biggest > improvements is the fatigue, I am no longer fatigued like I used to be. The > only side effect that I had, when first starting, I had bad diareaha (sp). > Just take imodium and it should help. After 5 days I was fine. > Well worth It!!!! > Good Luck, > Susan

Response:

I was diagnosed with Subcutaneous Lupus or Discoid Lupus at Christmas, and for that the dermatologist has Plaquenil , 200 mg twice a day, that is the generic Hydroxychloroquine, has anyone else had this, I haven’t yet started the medication as I was unsure of it but the pains in my hands and hips are really quite painful. Any help would be greatly appreciated. Carol

Response:

>Plaquenil , 200 mg twice a day, that is the >generic Hydroxychloroquine, has anyone else had this,

Yes, that is what I have been taking for 5 months. It has helped tremendously with pain and the flares have gotten better too. I think one of the biggest improvements is the fatigue, I am no longer fatigued like I used to be. The only side effect that I had, when first starting, I had bad diareaha (sp). Just take imodium and it should help. After 5 days I was fine. Well worth It!!!! Good Luck, Susan

Response:

>I also have esophageal reflux disease and irritable bowel syndrome which >the doctors have not associated with plaquenil. Your question makes me >wonder….is this a documented side effect of plaquenil? >Patti

Hi Patti, No it is NOT a documented side effect . Not all side effects are .They document the most common side effects first etc. !! Those symptoms of irritable bowel syndrome and reflux are symptoms of autoimmune disease’s so it is hard to say what it is from!! I have been on plaquenil for about 3 mths Plaq takes any where from 3-6 mths to build up in the blood and work!! It is a slow acting drug . Relief of symptoms usually happen slowly. I have seen reduction of joint stiffness and swelling and some pain . Fatigue for me has not been helped!! I am also on Minocin a antibiotic in the tetracycline family. I read of NIH studies where this drug was found safe and effective for RA and other autoimmune diseases were being studied. I then read a book called " The New Arthritis Breakthrough" by Henry Scammell. This drug has helped tremendously!! Reducing fatigue pain and " brain fog " and numerous lab work and other symptoms have improved . I have scleroderma , lupus and RA . I soon hope to be off the plaq. . The plaq definitely helped reduce inflammation and calm my " flare " allowing the mincoin to continue to work. So you may want to look into this therapy as well!! Also why on Plaquenil you need 6 mth in depth eye exams . Plaq is fairly benign but retina pigmentation can occur . With these eye exams if detected early no problems occur . This usually has no symptoms and thats why the exams are a must!!! Good luck and feel free to e-mail me Regards, soc…@aaol.com

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Hi Jan, I took it for about 2 years and it was tolerable, got my eyes checked regularly and then it just stopped working for me and I went into a bad flare and the doc said to get off it since it quit working so I did. Judith Louisiana – Hide quoted text — Show quoted text -Jan Bradley wrote in message <76blda$cc…@news-2.news.gte.net>… >Hi group! >Will probably be starting Plaquenil next month. Have done much research, >but looking for the word from people who have been there. How bad are >gastric side effects? Does this med seem to help with fatigue at all? >Been lurking this group for some time now. Love to hear from all… >Jan

Response:

Hi group! Will probably be starting Plaquenil next month. Have done much research, but looking for the word from people who have been there. How bad are gastric side effects? Does this med seem to help with fatigue at all? Been lurking this group for some time now. Love to hear from all… Jan

Response:

Hi Jan, I’ve been on Plaquenil since September, which is when I was diagnosed with Lupus. So far, I have not had any side effects at all. My Lupus is "mild" so I cannot offer an opinion regarding your fatigue. The pain and stiffness in my hands is MUCH better than it used to be, and my skin is healthier too. Just remember, it can take a few months before Plaquenil starts "taking effect". — –Paul My "reply" e-mail address has been changed to deter spammers. My real address is: scanguy "at" home "dot" com – Hide quoted text — Show quoted text -Jan Bradley wrote in message <76blda$cc…@news-2.news.gte.net>… >Hi group! >Will probably be starting Plaquenil next month. Have done much research, >but looking for the word from people who have been there. How bad are >gastric side effects? Does this med seem to help with fatigue at all? >Been lurking this group for some time now. Love to hear from all… >Jan

Response:

I have been on plaquenil for three years. This medication has not helped with fatigue or fevers, but it has helped my joint pain very much…I had much pain in my elbows, wrists, and hands which virtually ceased about two months after beginning plaquenil. This was a tremendous relief. However, I also have esophageal reflux disease and irritable bowel syndrome which the doctors have not associated with plaquenil. Your question makes me wonder….is this a documented side effect of plaquenil? Patti Jan Bradley <rbrad…@gte.net> wrote in article <76blda$cc…@news-2.news.gte.net>… – Hide quoted text — Show quoted text -> Hi group! > Will probably be starting Plaquenil next month. Have done much research, > but looking for the word from people who have been there. How bad are > gastric side effects? Does this med seem to help with fatigue at all? > Been lurking this group for some time now. Love to hear from all… > Jan

Response:

Hello, I have had lupus since I was eight and have been taken Plaquenil ever since than. My side effect were upset stomach and diearea , I try to take it with milk it helps. ———–== Posted via Deja News, The Discussion Network ==———- http://www.dejanews.com/ Search, Read, Discuss, or Start Your Own

Response:

this a generic: hydroxychloroquine – Hide quoted text — Show quoted text -LBINUJRSY wrote: > Is Plaq. the generic name or is the other name that start with a H the generic > name?

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I have been on Plaquenil for 13 years now and have what is called drug-induced glaucoma. It is hardly noticeable and I get regular eye checks. Part of the reason is also genetic, the doc says he’s not surprised at the glaucoma because half my family suffers with it. But if I go off the Plaquenil the glaucoma should go away. I have to make the choice as to which would be more beneficial for me. For now I will stay on the meds. I really don’t want to end up back in the hospital on dialysis like I was when I was first diagnosed. The doc has dropped my dose from 600 to 400 mg a day so I think things should be OK. Cheryl C. Cyndi Rojas <lrojas…@earthlink.net> wrote in message

news:38A7297A.DD916E3B@earthlink.net… – Hide quoted text — Show quoted text -> this a generic: hydroxychloroquine > LBINUJRSY wrote: > > Is Plaq. the generic name or is the other name that start with a H the generic > > name?

Response:

Hydroxychloroquinine is the generic name for Plaquenil. Tee http://www.geocities.com/Yosemite/Trails/8252 LBINUJRSY <lbinuj…@aol.com> wrote in message

news:20000110173430.01018.00001960@ng-fi1.aol.com… – Hide quoted text — Show quoted text -> Is Plaq. the generic name or is the other name that start with a H the generic > name?

Response:

Is Plaq. the generic name or is the other name that start with a H the generic name?

Response:

Hi Mare, I have been in Plaquenil for over 6 months now. It actually has helped the depressive moods I sometimes have. I have gained some weight on it though, about 12 lbs. Donna – Hide quoted text — Show quoted text -Stirling wrote in message … >I’ve recently been dx’d with lupus and have been on Plaquenil. Does anyone >know if it can cause depression and/or weight gain? Any info would be >appreciated. thanks, Mare

Response:

I just started on Plaquenil about 6 weeks ago. On just 200 mg I LOST 5 lbs in 3 weeks, despite continuing to eat my usual amount. My doctor reduced the dosage (has me taking it every other day), & I haven’t lost any more weight, but I haven’t gained any back either. I was already on a small amount of antidepressant for pain, so I haven’t noticed any depression, but it does make me irritable, & irritability, as well as weight loss, is listed as a side effect in the PDR. I’ve also had lots of diarrhea & intestinal cramping. Now that I’m taking it every other day, the side effects are very apparent–the last 12 hrs before I have to take the next pill, I feel great <g>! Just remember that everyone reacts differently to medication, & that’s often why medication side effect lists often show opposites for the same drug (for example, drowsiness & insomnia in some antidepressants). Be sure to let your doctor know of what you perceive as a side effect–it might really be due to something else that needs to be investigated. Sue

Response:

I’ve never gained weight with the Plaquenil and had been on it for 2 1/2 years-however the depression it caused, especially when trying to increase the dosage, forced me to quit taking it-it can be a side effect, although some physicians won’t readily admit to that. Hope it works well for you! God Bless. Cindy

Response:

IHi My Name is Kathy, I found out i had lupus about a year ago I’ve been on Plaquenil ever since.I have no complaints at all. I sometimes feel down and out but i really dont think its the plaquenil.as far as weight gain you blow up from predisone but i didnt from plaq…thx kathy

Response:

I’ve recently been dx’d with lupus and have been on Plaquenil. Does anyone know if it can cause depression and/or weight gain? Any info would be appreciated. thanks, Mare

Response:

Pamela, thank you for your reply. I couldn’t email you personally as my server couldn’t accept your email address. I hope your daughter is feeling better on the Plaquenil. Thanks again, Mare in Canada – Hide quoted text — Show quoted text -Stirling wrote in message … >I’ve recently been dx’d with lupus and have been on Plaquenil. Does anyone >know if it can cause depression and/or weight gain? Any info would be >appreciated. thanks, Mare

Response:

I’m a little confused as to why Plaquenil is prescribed. I have SD and Lupus. One doctor told me it would help my skin problems, and another doctor told me it was for pain and inflammation. I know that it is frequently prescribed for SLE and occasionally prescribed for Limited SD, but what is it supposed to actually do?

Response:

Sharon, This is my understanding of plaquenil: Plaquenil is an anti-malarial drug; how could malaria be releated to Lupus. Well I don’t know anything about malaria, but the quinine (weird). They found that the quinine has an anti-inflammatory effect like the NSAID’s that we take. Also, it seems to block the UV lights from damaging the skin. So hopefully, it can help with your joint problems as well as the skin. Be sure to discuss the side effects with your doctor, because it can affect your eyes, but then steriods can’t do worse damage to your eyes. I personally feel it is important to be an informed patient, even though the bottom line decision may be made by the doctor, especially if you’ve developed a relationship of trust and respect. Margaret

Response:

I agree with MB. Very good advise. Shell (SLE for 9 years and a nurse) M B wrote in message <6ie4ca$1e…@newsd-111.bryant.webtv.net>…

Response:

I have been taking Plaquenil for about 2 and 1/2 weeks now and I was having a headache all day when I took 2 a day. I stopped taking Plaquenil to see if the headaches would go away and they did. So I am going to start taking it again but this time I am only going to take 1 a day. When I first started I only took one a day and had no headaches. The headaches started when I took 2 a day. Have any of you had headaches with Plaquenil? I haven’t called my doctor because I am afraid that he will make me stop taking it and I really want to try to get relief from my joint pain.

Response:

"Lynn J." <cr…@cox.net> wrote in message

news:dd79ku4racu7jmokttg36cv80dr6dt1mum@4ax.com… > I have been taking Plaquenil for about 2 and 1/2 weeks now and I was > having a headache all day when I took 2 a day. I stopped taking > Plaquenil to see if the headaches would go away and they did. So I am > going to start taking it again but this time I am only going to take 1 > a day. When I first started I only took one a day and had no > headaches. The headaches started when I took 2 a day. Have any of you > had headaches with Plaquenil? I haven’t called my doctor because I am > afraid that he will make me stop taking it and I really want to try to > get relief from my joint pain.

I had incredible headaches before the plaquenil. Now, I only have them when I’m fighting a flare. I’ve got a beaut right now, from working far too hard on a project I shouldn’t have agreed to do. That said, I started on one a day, and only went to two when it became a necessity. It was that or something heavier. Give the plaquenil a chance, it really does help.

Response:

http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202288.html For treatment of arthritis: Adults

Posted in Running To Stand Still | No Comments » |

remission

Question:

I may have a silly question. I was diagnosed with MCTD two years ago and have been on meds since. How will I know if I am in remission if I am taking all this medication? I would love to be able to get off this stuff for a while. I was down to 5mg prednisone since I was also put on methotrexate, but now I had to go back to 8 because I have started developing major hives. If I go down to 7, the hives always come back and I start feeling sore. Can 1mg really make that much difference? Take care everyone.

Response:

On Wed, 19 Jan 2000 17:54:50 -0500, "Diane" <dberg…@wwdc.com> wrote: >I may have a silly question. I was diagnosed with MCTD two years ago and >have been on meds since. How will I know if I am in remission if I am >taking all this medication? I would love to be able to get off this stuff >for a while. I was down to 5mg prednisone since I was also put on >methotrexate, but now I had to go back to 8 because I have started >developing major hives. If I go down to 7, the hives always come back and I >start feeling sore. Can 1mg really make that much difference? Take care >everyone.

Simple statement of fact… sometimes remission can *only* be accomplished by staying on the meds. A full remisssion is not impossible but given that you can’t seem to come down on the prednison I wouldn’t hold my breath for full remission at this time. Everyone is different and you may just have to wait this out okay. It’s not a silly question at all. I would say that I am currently in remission because of two factors a) I don’t work a full-time physically demanding job anymore b) I am on plaquenil which has alleviated many of my symptoms. KCat in Houston Alt.Support.Lupus Frequently asked Questions (FAQ) http://www.ghg.net/schwerpt/aslfaq20.htm My Lupus Pages http://www.ghg.net/schwerpt/mypage.htm "She’s running to stand… still" (Bono)

Response:

BJ, anything is possible. Enjoy yourself, Kiss your golden girl, hang out, have fun. W From: "BJ" <B…@sk.nojunk.ca> Subject: Remission Date: Thursday, June 13, 2002 11:04 AM Good Morning, It would appear that I am in remission. I am gaining muscle and weight. I do have a question about that. Is it possible to remain that way if I take all my meds, stay out of the sun, and rest when I need to? Can remission be indefinite in a severe case? BJ- in sunny Sk.

Response:

I would hope so for you BJ I really would love to see one of have a true remission . I am making lotsa wishes for you to be . Cindy

Response:

Posted in Running To Stand Still | No Comments » |

vent to my ex-(language not for youngsters)

Question:

OR he could use it as ammunition in a custody battle to ‘prove’ how unstable you are. (Whether you are or not!) Vent them here, but IMHO, vent that type of stuff anonymously, if at all possible. Cal~

Response:

Nope, that was strike two in the failed relationship department. He hardly does anything for his own kids and wants no further contact with mine. Custody battle my ass. He just wants to screw his latest and greatest. The hell with the fact my youngest doens’t remember life without him. Or that our children care for each other. You gave him too much credit. (but you didn’t know the situation. Normal people want their kids) – Hide quoted text — Show quoted text – I agree and I was joking. If you read my rant above "unsent letter to the ex" It was full of some nasty venom that I was feeling and releasing here. Because I hold everything and don’t get mad often enough.So it was good for me. But I wouldn’t stoop to that level. Even if his head is so far up his backside that it might shake some sense into him. but I doubt it, he would just use it as more "proof" of how awful I am. Such bullshit! OR he could use it as ammunition in a custody battle to ‘prove’ how unstable you are. (Whether you are or not!) Vent them here, but IMHO, vent that type of stuff anonymously, if at all possible. Cal~

Response:

Ditto…What Janie said.

– Hide quoted text — Show quoted text – You sent it? Hmmm should I? It’s my personal experience that the writing of those kinds of vents is what is useful, beneficial, to the writer. I don’t see very often any gain to the writer in sending it. You don’t get a response you want – ever – from the recipient. And you can’t predict the further harm it could cause down the line – i.e., by delivering it to the recipient, you’re lashing out for (a) no beneficial purpose to yourself, and (b) with no way of predicting long-term consequences for the lashing out. Writing is good. Sending is a waste of time and creating a false hope that will be crushed by him/her when they receive it (the hope that they will HEAR you and be sorry for what they’ve done, or that you can make them hurt as bad as you hurt – it doesn’t happen). Janie — The reason why rivers and seas receive the homage of a hundred mountain streams is that they keep below them. – Lao Tse

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Cals got a point like I saaid you never know what strangers lurk in the shadows of the NG (lol)

Response:

Suckup! Ditto…What Janie said.

Dr. Kathryn Litherland, rent-a-prof Triton Community College and North Park University

Response:

Suckup!

Ditto, what Kathryn said. (AKA double-suck up) FWIW, I write a lot I never send (including posts) as a way to exorcise demons. Some people write, some people yell at their plants, some people work harder. What ever helps you let go of the rage and find a little inner peace is good. I always try to think about what effect I want before I post, or send a letter, and if it’s obvious I’m not going to get it, or worse I’m going to get the opposite, I just tear it up, hit the "delete" key or whatever. The exorcism is in the act, not in the sending. My 2C Ken

Response:

I agree and I was joking. If you read my rant above "unsent letter to the ex" It was full of some nasty venom that I was feeling and releasing here. Because I hold everything and don’t get mad often enough.So it was good for me. But I wouldn’t stoop to that level. Even if his head is so far up his backside that it might shake some sense into him. but I doubt it, he would just use it as more "proof" of how awful I am. Such bullshit! – Hide quoted text — Show quoted text – You sent it? Hmmm should I? It’s my personal experience that the writing of those kinds of vents is what is useful, beneficial, to the writer. I don’t see very often any gain to the writer in sending it. You don’t get a response you want – ever – from the recipient. And you can’t predict the further harm it could cause down the line – i.e., by delivering it to the recipient, you’re lashing out for (a) no beneficial purpose to yourself, and (b) with no way of predicting long-term consequences for the lashing out. Writing is good. Sending is a waste of time and creating a false hope that will be crushed by him/her when they receive it (the hope that they will HEAR you and be sorry for what they’ve done, or that you can make them hurt as bad as you hurt – it doesn’t happen). Janie — The reason why rivers and seas receive the homage of a hundred mountain streams is that they keep below them. – Lao Tse

Response:

You sent it? Hmmm should I? Kayann – Hide quoted text — Show quoted text – well that was a great start. I could have written that. It was well done and you should feel just 1% better than you did. I wrote on like that and i did mail it to my stbx. If we are going to end this on her terms I thought it fair to let her have it. Good Luck Do not hold back and tell us how you feel. Ronn FUCK YOU FUCK YOU FUCK YOU Who the FUCK do you think you are?! YOU fucking cheated. You were to much of a pussy, too superficial to have the BALLS to tell me what was going through your head last year. How was I to know??? You’d have an answer to that you cunt. Everything up till then was not perfect between us. You knew that and I did. It was , however, no more my fault than yours. 50/50. For you to hi-jack the previous 8 years and use every fight/argument, every issue as your basis for ending it all, for cheating, for treating me the way you did after 11/17 is VERY WEAK. It’s bullshit. FUCK YOU. That’s not what happened. What did happen is WE fought. WE argued. WE disrespected and took each other for granted. IT was a two way street. I said hurtful things. Most often a reaction to something hurtful you had just said or done. Sometimes I said/did something just because of me. You were very quick to hurt back though. To FIGHT back- not argue- we really never had an argument they were fights. You took the easy (for you) way out though. You stole my heart. You ripped it all out and cut it into a million pieces never to be put back together- all becuase you were in "love" with Jon. FUCK you. Where is he now?? You don’t know what love is. All you know is what’s making you feel good at the moment. Committment. Love. UNCONDITIONAL love- (which is what I thought we had) Respect. Friendship. Support. These are all words- things you know nothing about. You hurt me beyond comprehension. The way you treated me after last Thankgiving was/is just TERRIBLE. I deserve better treatment from you. Where did you go? What the fuck happened to you? You got what you wanted. You handled the whole thing the way YOU wanted- even when I told you that it was a shitty way to do it- that it all could have been handled better/differently. It ALL comes down to only what YOU want. What you FEEL at the moment. No consideration for anyone/anything outside of your head. And you still bitch at me. You still tell me all the things I’m bad at. All the things I don’t do. I didn’t do. ME me me. WHAT ABOUT YOU!?!?!? FUCK YOU FUCK YOU YOU hurt me. No one else did. YOU did it. You think I’m not hurt still? You think I’m not sensitive to your words?? You ran me through the wood chipper. YOU YOU YOU YOU YOU YOU. YOU did all that. Have you really twisted history in your mind to blame me for 98% We looked at houses all fall. We were making future plans. We went looking at snowmobiles on my Birthday last year. 2 weeks later it was over and I never had a clue. I never had a clue from you that we were in so much trouble. Never a clue that you felt an affair and new "love" was what you felt you "needed". Nope. I got plans. I got birthday dinners. I got "nothings wrong". I GOT SHIT. I GOT FUCKED. I GOT HURT. I GOT ANGER. I GOT VERBAL ABUSE . I GOT ALL THE BLAME. You think a tit job is going to fill that empty hole in you and make you feel good about yourself? Maybe. Maybe not. I think you’ve always been unhappy – that there was a core unhappiness about you. You were always searching. Always running. You could never sit still and enjoy what you had at the time. Never could just enjoy us.Yourself. Always running, looking forward. "If I have this, if I get that, I’ll be happy". Are you running to stand still? What did I do to deserve this treatment that I’ve gotten for almost a year?? You go get your boob job. Get your new leather couch. your new stereo. your new porch furniture. your new cloths. you new this your new that. Go get all your new material things. I hope they make you happy. I don’t think they will. Not at all. You just keep that carrot in front of you. You just keep running. Chasing. Here’s a hint: Look in the FUCKING mirror. Look at your Mom. Deal with those things and you might be surprised at what you find out and how you feel. I’m afraid you are going to cause me much pain and stress until you are happy with yourself- which is the day you stop taking it all out on me. The day you stop blaming me in your heart/head. Why do you bother me so much though?? FUCK YOU STACEY. I will go cry … I think I might need to. me

Response:

well that was a great start. I could have written that. It was well done and you should feel just 1% better than you did. I wrote on like that and i did mail it to my stbx. If we are going to end this on her terms I thought it fair to let her have it. Good Luck Do not hold back and tell us how you feel. Ronn

– Hide quoted text — Show quoted text – FUCK YOU FUCK YOU FUCK YOU Who the FUCK do you think you are?! YOU fucking cheated. You were to much of a pussy, too superficial to have the BALLS to tell me what was going through your head last year. How was I to know??? You’d have an answer to that you cunt. Everything up till then was not perfect between us. You knew that and I did. It was , however, no more my fault than yours. 50/50. For you to hi-jack the previous 8 years and use every fight/argument, every issue as your basis for ending it all, for cheating, for treating me the way you did after 11/17 is VERY WEAK. It’s bullshit. FUCK YOU. That’s not what happened. What did happen is WE fought. WE argued. WE disrespected and took each other for granted. IT was a two way street. I said hurtful things. Most often a reaction to something hurtful you had just said or done. Sometimes I said/did something just because of me. You were very quick to hurt back though. To FIGHT back- not argue- we really never had an argument they were fights. You took the easy (for you) way out though. You stole my heart. You ripped it all out and cut it into a million pieces never to be put back together- all becuase you were in "love" with Jon. FUCK you. Where is he now?? You don’t know what love is. All you know is what’s making you feel good at the moment. Committment. Love. UNCONDITIONAL love- (which is what I thought we had) Respect. Friendship. Support. These are all words- things you know nothing about. You hurt me beyond comprehension. The way you treated me after last Thankgiving was/is just TERRIBLE. I deserve better treatment from you. Where did you go? What the fuck happened to you? You got what you wanted. You handled the whole thing the way YOU wanted- even when I told you that it was a shitty way to do it- that it all could have been handled better/differently. It ALL comes down to only what YOU want. What you FEEL at the moment. No consideration for anyone/anything outside of your head. And you still bitch at me. You still tell me all the things I’m bad at. All the things I don’t do. I didn’t do. ME me me. WHAT ABOUT YOU!?!?!? FUCK YOU FUCK YOU YOU hurt me. No one else did. YOU did it. You think I’m not hurt still? You think I’m not sensitive to your words?? You ran me through the wood chipper. YOU YOU YOU YOU YOU YOU. YOU did all that. Have you really twisted history in your mind to blame me for 98% We looked at houses all fall. We were making future plans. We went looking at snowmobiles on my Birthday last year. 2 weeks later it was over and I never had a clue. I never had a clue from you that we were in so much trouble. Never a clue that you felt an affair and new "love" was what you felt you "needed". Nope. I got plans. I got birthday dinners. I got "nothings wrong". I GOT SHIT. I GOT FUCKED. I GOT HURT. I GOT ANGER. I GOT VERBAL ABUSE . I GOT ALL THE BLAME. You think a tit job is going to fill that empty hole in you and make you feel good about yourself? Maybe. Maybe not. I think you’ve always been unhappy – that there was a core unhappiness about you. You were always searching. Always running. You could never sit still and enjoy what you had at the time. Never could just enjoy us.Yourself. Always running, looking forward. "If I have this, if I get that, I’ll be happy". Are you running to stand still? What did I do to deserve this treatment that I’ve gotten for almost a year?? You go get your boob job. Get your new leather couch. your new stereo. your new porch furniture. your new cloths. you new this your new that. Go get all your new material things. I hope they make you happy. I don’t think they will. Not at all. You just keep that carrot in front of you. You just keep running. Chasing. Here’s a hint: Look in the FUCKING mirror. Look at your Mom. Deal with those things and you might be surprised at what you find out and how you feel. I’m afraid you are going to cause me much pain and stress until you are happy with yourself- which is the day you stop taking it all out on me. The day you stop blaming me in your heart/head. Why do you bother me so much though?? FUCK YOU STACEY. I will go cry … I think I might need to. me

Response:

F——-

(snipped) I will go cry … I think I might need to. me

This is a good start… You’re gonna be ok…

Response:

Hey I just wrote that… change the names, genders and time frames around…. Nobody *deserves* be cheated on. No matter what the cheater imagines. There are more mature ways of handling things. But this rarely happens. How does one just remove all of the programming that time creates? Where we filter our own self perception through theirs. You can’t, it takes time. And boundries. If she won’t listen, write her a letter and tell her that outside of the kids you do not want to interact with her. meet in a neutral place if she won’t respect that when you exchange the children. . A restaurant or public place may (or may not depending on the person) limit her desire to make a scene. Otherwise a relatives home where you are there at seperate times. It has taken me time to re-establish my own worth independant of the way my ex treats me. I do not put my self-image through his filters anymore because they are fucked up. And I have been pretty successful at it. Today he got yet another low shot in. And it hurt. Briefly. I armoured myself with the knowledge of all the family and friends who love me and KNOW me. It is not worth it to interact with someone who is being unfair to you regardless of history. If this was someone you just met would you put up with it? No. I know it hard when you know somebody so well and you see them making mistakes. Get the hell out of the way, it isn’t your mess to clean up anymore. Kayann

Response:

FUCK YOU FUCK YOU FUCK YOU Who the FUCK do you think you are?! YOU fucking cheated. You were to much of a pussy, too superficial to have the BALLS to tell me what was going through your head last year. How was I to know??? You’d have an answer to that you cunt. Everything up till then was not perfect between us. You knew that and I did. It was , however, no more my fault than yours. 50/50. For you to hi-jack the previous 8 years and use every fight/argument, every issue as your basis for ending it all, for cheating, for treating me the way you did after 11/17 is VERY WEAK. It’s bullshit. FUCK YOU. That’s not what happened. What did happen is WE fought. WE argued. WE disrespected and took each other for granted. IT was a two way street. I said hurtful things. Most often a reaction to something hurtful you had just said or done. Sometimes I said/did something just because of me. You were very quick to hurt back though. To FIGHT back- not argue- we really never had an argument they were fights. You took the easy (for you) way out though. You stole my heart. You ripped it all out and cut it into a million pieces never to be put back together- all becuase you were in "love" with Jon. FUCK you. Where is he now?? You don’t know what love is. All you know is what’s making you feel good at the moment. Committment. Love. UNCONDITIONAL love- (which is what I thought we had) Respect. Friendship. Support. These are all words- things you know nothing about. You hurt me beyond comprehension. The way you treated me after last Thankgiving was/is just TERRIBLE. I deserve better treatment from you. Where did you go? What the fuck happened to you? You got what you wanted. You handled the whole thing the way YOU wanted- even when I told you that it was a shitty way to do it- that it all could have been handled better/differently. It ALL comes down to only what YOU want. What you FEEL at the moment. No consideration for anyone/anything outside of your head. And you still bitch at me. You still tell me all the things I’m bad at. All the things I don’t do. I didn’t do. ME me me. WHAT ABOUT YOU!?!?!? FUCK YOU FUCK YOU YOU hurt me. No one else did. YOU did it. You think I’m not hurt still? You think I’m not sensitive to your words?? You ran me through the wood chipper. YOU YOU YOU YOU YOU YOU. YOU did all that. Have you really twisted history in your mind to blame me for 98% We looked at houses all fall. We were making future plans. We went looking at snowmobiles on my Birthday last year. 2 weeks later it was over and I never had a clue. I never had a clue from you that we were in so much trouble. Never a clue that you felt an affair and new "love" was what you felt you "needed". Nope. I got plans. I got birthday dinners. I got "nothings wrong". I GOT SHIT. I GOT FUCKED. I GOT HURT. I GOT ANGER. I GOT VERBAL ABUSE . I GOT ALL THE BLAME. You think a tit job is going to fill that empty hole in you and make you feel good about yourself? Maybe. Maybe not. I think you’ve always been unhappy – that there was a core unhappiness about you. You were always searching. Always running. You could never sit still and enjoy what you had at the time. Never could just enjoy us.Yourself. Always running, looking forward. "If I have this, if I get that, I’ll be happy". Are you running to stand still? What did I do to deserve this treatment that I’ve gotten for almost a year?? You go get your boob job. Get your new leather couch. your new stereo. your new porch furniture. your new cloths. you new this your new that. Go get all your new material things. I hope they make you happy. I don’t think they will. Not at all. You just keep that carrot in front of you. You just keep running. Chasing. Here’s a hint: Look in the FUCKING mirror. Look at your Mom. Deal with those things and you might be surprised at what you find out and how you feel. I’m afraid you are going to cause me much pain and stress until you are happy with yourself- which is the day you stop taking it all out on me. The day you stop blaming me in your heart/head. Why do you bother me so much though?? FUCK YOU STACEY. I will go cry … I think I might need to. me

Response:

Posted in Running To Stand Still | No Comments » |

Hawkmoon 269 and Running To Stand Still snippits played tonight!

Question:

Thanks! I checked it out and was pleasantly surprised at the smooth download. Very nice recording too. I have to say this is one of the coolest things I’ve heard from the current tour. It seems like they are slowly but surely working up Desire to be a tougher version each night they play it. Hawkmoon flows great into Desire they way they played it and thematically, Running To Stand Still flows even better from Desire. Musically, it needs a bit of work but it certainly is one of the top 3 highlights of the acoustic set (the other two being the premier of Wild Honey and Stay with the fan on piano) so far in the tour. Hopefully, this performance wasn’t a one-off thing and they’ll develope it further. T.B. —–= Posted via Newsfeeds.Com, Uncensored Usenet News =—– http://www.newsfeeds.com – The #1 Newsgroup Service in the World! —–== Over 80,000 Newsgroups – 16 Different Servers! =—–

Response:

Hopefully they’ll play the full version of Running soon. Though that was a nice version too. Nick

– Hide quoted text — Show quoted text – According to U2tours, during the acoustic set a verse of Hawkmoon 269 was played before Desire, then in the middle of that song, two verses of Running To Stand Still were played with the whole band. Pretty cool! T.B. —–= Posted via Newsfeeds.Com, Uncensored Usenet News =—– http://www.newsfeeds.com – The #1 Newsgroup Service in the World! —–== Over 80,000 Newsgroups – 16 Different Servers! =—–

Response:

According to U2tours, during the acoustic set a verse of Hawkmoon 269 was played before Desire, then in the middle of that song, two verses of Running To Stand Still were played with the whole band. Pretty cool! T.B. —–= Posted via Newsfeeds.Com, Uncensored Usenet News =—– http://www.newsfeeds.com – The #1 Newsgroup Service in the World! —–== Over 80,000 Newsgroups – 16 Different Servers! =—–

Response:

I read somewhere that these two snippets were prompted by audience members handing Bono lyric sheets. Tom

Response:

The "mix" canbe dowwnloaded from www.elevation-tour.com… Line

Response:

Posted in Running To Stand Still | No Comments » |

The Edge on Teen Hollywood???

Question:

Gerasimoula Papadopoulos 1293 Chameran St. Ville St. Laurent, Quebec H4N-1T5 CANADA 514-331-7020

Response:

I was in junior high when I started listening to U2. Because of their passion for causes and awareness, it has helped me grow up and realize that the world is not one big happy playground. It made me aware of what was happening in thej world and what can happen in our own backyards. Songs such as Running To Stand Still (drug abuse) and the loss of relatives & friends as in the song One Tree Hill. I’m not saying we should throw kids to the wolves but at least make them aware what’s going on in our world and that they can do a small part to change it. It appears U2 is attempting to force feed today’s pop generation their music. U2 obviously do not have enough confidence in their music to sit back and let these kids come to them instead.

Well, when Jesus walked the earth, did the masses come to Him at first? Jesus went to them. He didn’t sit on his butt and have a "take a number" service line. When you go to Teen Hollywood and do interviews, you are no longer a rock band. Actually, you are using rock and roll to shamelessly market your product.

And the product is awareness, free speech, anything can be done if you want to, arts, political activism. Yeah, sure is a terrible product. I shudder with you. U2 has obviously yet to realize that one of their original fans is worth a thousand of their newly found fans. At U2’s age, these new fans will sell them down the river the next time the new Destiny’s Child album comes out. Oh, I forgot, U2 will be on that Destiny’s Child album. Our favorite Irish sons have finally become cartoon figures.

Well, I thought HMTMKMKM was different but not a bad video. Now their Elevation video reeks of Matrix rip off but still I think it’s a good video. Especially with the Edge supposedly helping Lara Croft (since the Edge is into tech manuals), Larry on his Harley. Dunno about Adam in a taxi. ISHFWILF video comes to mind. And as for Bono, they should cast him in the sequel to Matrix if there was still time. He’d make a good bad guy. *LOL*

Response:

U2 has obviously yet to realize that one of their original fans is worth a thousand of their newly found fans. At U2’s age, these new fans will sell them down the river the next time the new Destiny’s Child album comes out. Oh, I forgot, U2 will be on that Destiny’s Child album. Our favorite Irish sons have finally become cartoon figures.

I thought you hated them? I’m confused… –pete

Response:

Why is The Edge cheapening the image of the band by appearing in such publications like Teen Hollywood? The kids who read Teen Hollywood don’t even know what a guitar is. These kids look at U2 on stage and probably think to themselves "Why are those old guys holding those stupid looking things in their hands? Shouldn’t they be dancing or something"? It appears U2 is attempting to force feed today’s pop generation their music. U2 obviously do not have enough confidence in their music to sit back and let these kids come to them instead. When you go to Teen Hollywood and do interviews, you are no longer a rock band. Actually, you are using rock and roll to shamelessly market your product. U2 has obviously yet to realize that one of their original fans is worth a thousand of their newly found fans. At U2’s age, these new fans will sell them down the river the next time the new Destiny’s Child album comes out. Oh, I forgot, U2 will be on that Destiny’s Child album. Our favorite Irish sons have finally become cartoon figures.

Response:

Posted in Running To Stand Still | No Comments » |

Which Movies Do U think U2 should've done music for?

Question:

What movies in the past, would you want U2 to do music for?

Response:

Pulp Fiction Outta Sight Two Days in the Valley Magnolia Boogie Nights …..but I seem to get a kick outta doin ya cold "Baby–you treated me…like some…unwanted…child"-Prince "You must be trippin’ on some of that Voodoo I been throwin’ down"-Dulli/Afghan Whigs Im bold as love…just ask the axis ICQ#18984002

Response:

What movies in the past, would you want U2 to do music for?

Trainspotting (Running To Stand Still would have been perfect!!)

Response:

All That You Can’t Leave behind would make a good soundtrack for American Beauty. Colin

Response:

Posted in Running To Stand Still | No Comments » |

lupus sucks

Question:

Change banks! <gemini…@webtv.net> wrote in message

news:28949-387213F4-18@storefull-231.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -> I have lessions on my checks that no one can seem to get rid of I hate > them. I have tried everything to get rid of them . I have had lupus > for17 years . Ihave gone to many doctors ad i have finaly found the best > Any one in the N.J. area that needs a GREAT Dr.that would be Ana > Cilursu in ATLANTIC city.

Response:

Sorry about your lesions. How are you otherwise? Right now I have terrible finger nail fungus – very gross. I agree – LUPUS SUCKS! I have had it for 3 years and I’m ready for a vacation from it. Susan (iyam…@aol.com)

Response:

I agree with someone i recently read on the subject of lupus it SUCKS!!!, I have had it since 1991, and I am getting ready for a lung biopsy in the next two weeks. To prepare myself I have cut down on my sodium intake since that bloats me up due to the pred. i’m on. according to mr dr. if my lungs are inflamed as he believes I will be coming home on about 100mgs. /day. I’m going to be so wired up I’ll be lucky to get two hours sleep a night. Basically I could use someone to talk to about the whole lupus experience.

Response:

Mellette I have been diagnosed since Oct. ‘98 and have gone from working full time to part time to disability. So I must concur Lupus Sucks. Can I ask, why are you scheduled for a lung bx. Is it for diagnostic purpose for lupus or something else? I have a lot of pleural and rib pain caused by the lupus. I too, become so blotted from the pred. sometimes I become so short of breath and that is only on 20 to 30 mg. I can’t image 100 mg/day. My husband and I joke about my not sleeping and his line is "yeah but the house is always clean." Sometime you just have to laugh at the situations we find ourselves in. When the time comes, if you are up to it I think many of us would like it if you shared your experiences with us. After all like you said you’ll have all those extra hours in your day that you used to spend sleeping. God bless MaryAnne

Response:

> I slept every sat and sun away and for years thought I was "coming down with

something" every weekend. :P < Too funny! Too true! Finally, I am meeting other queens of the naptime! LOL kelly

Response:

o o don’t worry about depressing someone else.Hey te doctrs have been sicking it to me right and left for 16 years,my regular doctor says lupus the kiney dr saus noand the arthritis says no and the pain is becoming unbearable.Do to meds Iam 100 lbs overweight and I also take over 15 pills a dayI sleep 1 to 2 hours a night due to pain. It is getting old and Iam with you it does suck But dear there are people much worse off so keep fighing, Enjoy life as bet you can. Please don’t resign yourself to it.

Response:

I can relate to that! I use to end up in the ER thinking I was having a heart attack, but found out it was lupus/fibro flares and now i take a combination of these drugs and it truly does help. Plaquinal and Norflex 2 times a day Ultram 3 times a day 1 lorazapam at night for anxiety, I wake up a lot with night sweats and a panic feeling goes along with it. Extra pills taken when needed are lomotil when needed for IBS and Estrace since my hysterectomy and synthroid daily for my hypothyroidism. I just got on the first 3 meds i mentioned on the 7th of Dec, finally found a Rhummy that took charge and said we got to help you feel better!! If anyone in AZ is looking for a good Rheumy Dr. Ravi Bhalli is great! Also Dr. Magne Dermatologist, she’s also wonderful!! Mary/AZ

maryspeisr.vcf

< 1K Download

Response:

I agree!!!!!! Your posting sounds very similar to my first posting, thst I typed just a few minutes ago. For years, I’ve been going to the doctor for problem after problem, all with a different diagnosis…..Reflex Sympathetic Dystrophy, Fibromaylgia, Myosits, Kidney Infections, Thoracic Outlet syndrome, I even had to have a hysteretomy a few years ago because of abnormal bleeding- , my last 2 pregnancies were monitored very closely, becuse they thought there was a possibilty that I might miscarry because of the Anti-P something in my blood, and none of those things were asociated with Lupus until just recently , by my doctor, I guess he finally took the time to read my medical history! I have always been a fighter and have always tried to be the best at everything I do, but this disease really does SUCK and I wish it would go away because, I cant be myself anymore. Thanks for listening to my whining too!

Response:

<< I even had to have a hysteretomy a few years ago because of abnormal bleeding- , my last 2 pregnancies were monitored very closely, becuse they thought there was a possibilty that I might miscarry because of the Anti-P something in my blood, >> Sounds like antiphospholipid syndrome. What is Antiphospholipid Syndrome? (THE BEST!!) http://members.aol.com/AMAmail/Anti.html Antiphospholipid Syndrome (A great site for in depth neuro information both for laypeople and professionals. Lots of other links.) http://www.neuroland.com/cvd/aps.htm Sandra

Response:

I have lessions on my checks that no one can seem to get rid of I hate them. I have tried everything to get rid of them . I have had lupus for17 years . Ihave gone to many doctors ad i have finaly found the best Any one in the N.J. area that needs a GREAT Dr.that would be Ana Cilursu in ATLANTIC city.

Response:

I to have had to leave my occupation of 20+ years. My employer did not accept my disability and refused to reduce my hours as my doctors recommended. I worked well beyond my endurance for the past several years and finally realized that I was cheating myself and my family. I gave my notice and retired. The decision alone seemed to help me as I am going through a "flare" right now. My income will be greatly reduced, but I will have the strength and stamina to spend time with my granchildren. Life is more important that leaving a cash legacy…Only those with the dx of Lupus can understand that even though we have not always got "obvious" symptoms….we are suffering. My dx is complicated by the fact that 13 years ago I had a stroke and because of meds prescribed to prevent another occurance, many of the meds available to Lupus sufferers are going to cause negative reactions. All I can say to anyone who suffers from this disease is that you have to live each day at a time and make the most of each day. * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!

Response:

I have been dx with Lupus also and I agree "lupus sucks". December 15 was my last day of work as a secretary on the same job for 20+ years. My new administrator feels that if you’re walking, talking and breathing, you can work a 40+ hour week. My doctors sent him a letter twice telling him that I should not work an 8 hour day…..he said he could not allow me to work anyless and if I did he would replace me…. I then resigned in desperation. I also have diabetes, server degeneration of my cervical and lumbar spine, status post CVA, polymyositis, vasculitis. No one know that pain, depression, or the lack of energy this disease causes unless they are suffering themselves. I wish I could wave a magic wand and make all this go away…all I can say is live each day for what you can and enjoy every moment of happiness….I plan on spending more time doing things for my family now that I don’t have to expend so much time at my job. * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!

Response:

i thought fibromyalgia was bad when I was diagnosed wiht that in 1988. but at least i could control that with excercise and medication (not always legal meds mind you.) but now i am diagnosed with borderline lupus. my doctor calls is borderline because my ana is borderline positive. but no matter what she calls it. it sucks. it hurts, it has invaded my lungs and my joints and it truly truly truly sucks. the 40 hour work week is too much for me anymore, but i am struggling through it with small doses of vicodin. (1/2 tablet twice a day.) plus all the others meds, prednisone, plaquenil, other stuff for my lungs. it sucks. i think i just needed to say that. been trying to keep a happy face, oh it’ll be ok. but now i’m starting to realize it’s not ok, not if it’s going to push me out of a normal job or my ability to take care of my family. this started about a year and half ago and is not getting better, if anything slowly worse. and it’s time to face facts, it’s not ok, it is pushing me out of my normal life. i gotta find a new plan i guess. hope this dosen’t depress anyone, i’m not really depressed yet i’m just in the THIS TRULY SUCKS stage. Thanks for listening to my whine.

Response:

I understand and agree with you totally. I also have a problem with my lungs and that really makes me angry. I have a 17 month old son and it is soo hard to take care of him at times. I have been forced to work part time now. A 40 hour week would kill me. My health really fell apart after I had the baby. I am struggling to get back on track. What exactly do you do for you fibromyalgia? I have recently satrted abusing vicodin myself. I thelps me deal better, but I know that I cant do that forever……I have been dabbling in herbs, but havent found the magicl combination just yet…

Response:

> I have recently satrted abusing vicodin myself. I thelps me >deal better, but I know that I cant do that forever

As far as the vicodin goes, I told my rheumy that a vicodin in the evening makes me feel better. After a long day I am achy and it helps the pain and helps me sleep better, too. I asked him if he’d feel comfortable giving me one a day (I had been stockpiling pain meds from various doctor visits and ER trips). He agreed, and I now have a daily vicodin to help me through the pain. Now if I could find the magic pill that works when the chest pain (maybe costochondritis, maybe pleurisy?) comes I’ll be happy. When it hurts to take a breath I can’t stand it. I get panicky and when vicodin and heat and ice and nothing helps I get upset and the pain worsens and I wind up in the ER. Wow, it’s true, Lupus DOES Suck! Karena ke…@aol.com "It is only with the heart one can see rightly; what is essential is invisible to the eye" -Antoine de Saint-Exupery

Response:

Karena, The best thing short of steroids for costochondritis or peuricarditis is Indocin, a non-steroidal that concentrates in the chest area. It has been known to give some people wicked headaches, but not everyone gets them and it might help the costo.

Response:

On Mon, 20 Dec 1999 04:45:29 GMT, mynh…@mediaone.net (Mark Mynhier) wrote: >Karena, >The best thing short of steroids for costochondritis or peuricarditis >is Indocin, a non-steroidal that concentrates in the chest area. It >has been known to give some people wicked headaches, but not everyone >gets them and it might help the costo.

The ER doc also recommended Tilcotil (tenoxicam) for chest pain when I had to go in with bad costo – I’ve been taking it daily since and it has certainly damped down the pain, although I still get the odd flare-up. It’s from the same family of NSAIDs as Indocin. Suzanne * – * – * – * – * – * – * – * – * – * – * – * – * – * – Suzanne Doig – remove obvious from reply-to address http://www.geocities.com/smdnz/

Response:

I haven’t read all the responses.. probably they go something like this. AMEN! Yes it sucks. Lupus Sucketh! We get so wrapped up in all our attempts to give information, explain symptoms, meds, etc. All that is wonderful. But now and then we just have to vent and say THIS SUCKS AND I HATE IT! :) I did give up my job but I had the benefit of having a husband that does most of the financial support anyway. What I don’t say in that statement is that I *still* feel great emotional guilt, turmoil, grief, pain, etc. for giving up a job that I loved but that was making me too sick to even speak the English language correctly (and it is my first language after all). I hope you can get into a remission stage where you don’t have to take a job hit. Try to get as much rest on weekends (or whenever your days off are) as possible. of course, if you’re like me – you have no choice. I slept every sat and sun away and for years thought I was "coming down with something" every weekend. :P oh well… live and learn. Take care and feel free to vent away. KCat in Houston Alt.Support.Lupus Frequently asked Questions (FAQ) http://www.ghg.net/schwerpt/aslfaq20.htm My Lupus Pages http://www.ghg.net/schwerpt/mypage.htm "She’s running to stand… still" (Bono)

Response:

Your note sounds like something I might have written 4-5 years ago. Between a stressful job, pre-teen children, almost constant pain, and extreme fatigue I wasn’t "making it". Like you, I wasn’t depressed, but definitely was discouraged big time! Today I feel pretty good and am able to handle full time work (most of the time). Here’s what worked for me: a new doctor who took my situation seriously. He revised my medication to help me stay on top of pain and wrote a letter to my employer requesting a four day work week. (I am a high school teacher and was still able to swing this!! I stayed home on Wednesdays for most of one school year. Sometimes I was not able to manage even the remaining four days. My husband works in the same building so was able to do most of the driving which was important, too. Turns out the planned absences were easier on the program then what was happening before. Not ideal, but we were able to make it work.) During this time I stumbled over the relationship between the days when I felt fully and completely horrid … and exposure to the sun! All those family trips that went to ruin because I had never made that connection!! Be sure that I am very conscious of sun exposure these days. Anyway, once I started getting on top of the pain and fatigue I slowly, but surely, was able to climb out of the dungeon. I now work full time with a reasonable number of absences. I do have periods of intense pain, but they pass. I do still have problems with fatigue, but with adequate rest it’s manageable. In addition, I find deep water aerobics helps me to stay in (semi) shape. I tend to feel worse during my intermissions from the water. Good luck with your struggle. CP

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Posted in Running To Stand Still | No Comments » |

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