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Thank you for reading!
Yours in Health,
ElizabethView Thread
Please take a moment and introduce or reintroduce yourself. Tell us a little about your condition/experience with Lupus and one tip that has helped you.
ElizabethView Thread
I need some help or advice on how to deal with my frustration of balancing my limitations of what I can do at home and not causing issues with my husband/marriage. I want to start off by saying that my husband understands I'm sick and does not deny that fact however it's the subtle remarks or hints that I think he is making that may insinuate that he thinks I'm being lazy when I don't have the energy to clean, I'm just plain tired, or I'm in pain (I work a 40/hour week). I really try because I don't want to cause tension between us but then I get resentful because I am basically pushing myself to my limit at times to get cleaning just so I don't have to get THAT look of disappointment. Although I love the Spoon Theory, my husband did not really have much to say about it after he read it. He has been hurting, himself (possibly psoriatic arthritis) from what I understand and instead of being empathetic to my limitations, he basically throws it in my face that he "keeps going" regardless of his pain. But everyone is different, and I don't think he gets that.
I know he loves me and that's not a question about that. I just need some help sometimes (he does help but doesn't do as much as he expects me to do - he comes from an old fashioned "wife does all the work" family. I would love to do that if I could if my body wasn't screaming. So I just need to know how to get the help which I haven't been successful with and truly getting him to understand what I go through (I believe since I really don't complain about my symptoms very much - he may not believe that they are that bad and possibly just thinks I'm being lazy)
Please help!View Thread
I did see my primary doctor the other day - not due to my throat as the blisters or whatever they were disappeared - but due to a lump/cyst/mass I discovered in my cheek near the bottom jaw bone (above the teeth, not near the neck) He didn't think it was cancer as it moved around, but probably a cyst of some type. Told me to watch it.
Can't help but be a little concerned as I am still recovering from maxillary surgery on that same side where they removed some weird cyst that destroyed a lot of facial bone... sigh...
LisaView Thread

LisaView Thread
about it, what does it do exactly and how does it make you
feel? I am on a host of meds but if this works so well
then I might be able to get off some of them.
Marnanie.View Thread
Every time I have a flare (which is about every 5 years) I go on prednisone 60mg and imuran. I stay on the prednisone for about 2 years, tapering down along the way. They are not fun at all, but it beats the alternative. I gain about 40 pounds each time. After I am on them for a few weeks, I have about a month long bout with insomnia. I only sleep for about 3 hours a night and have so much energy.
Don't start too many projects, though, because it will come to a screeching halt. I remain tired and weak for the duration. I get depressed and very cranky. It is not the worst thing in the world. Just make sure your family is prepared as you are and that you have a good doctor. Good luck, you will be in my prayers.View Thread
Well, that was that and I have felt good ever since. Now I had another baby 3 months ago and the symptoms have returned. I walk up the stairs and my oxygen dips to 80%. I get dizzy when I cough and all the other signs that come with low oxygen. Well, there aren't too many lung doctors in our area, so I was referred to a lung clinic at a larger hospital. They cannot get me in for a month and a half. I can't wait that long, so I need my family doctor to start treating me now. I don't really want to take the steroid route if there are other options. Has anyone tried different treatments? How did they work? Anyone used Oxygen therapy alone? Did it work?
Thanks in advance!View Thread
I hope you are doing well and time is healing your wounds.
Lisa T.View Thread
Lisa T.View Thread
It seems like you're taking a lot of meds at first, but there can always be more it seems. I know you think the ibuprofen isn't working for your pain but wait, it is also reducing inflammation. I wish I could take ibuprofen but I can't because of kidney issues.
The inflammation was going down and I was starting to feel better on just the plaquenil and ibuprofen but they took all NSAIDs away because of my kidneys. Now I don't have that and my joints hurt all the time, except when I take 1/2 a percocet in the evening. I'm up every morning now at 4am because my feet and ankles hurt so much.
So while it seems you are taking a ton of medications, it can become more plentiful. I've been told that reducing the inflammation will go a long way to reducing pain, but it takes time. Good luck and keep taking your meds, it will work eventually, hopefully.
Lisa T.View Thread
I'm sorry your husband lost his job and you had the relapse of pain but am glad to hear the pain didn't last long.
Keep up with the walking! It is so good for you!

LisaView Thread
Take the Poll
Poll Results
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ANY0% (0)
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IT COULD BE0% (0)
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I RECOMMEND0% (0)
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MAYBE THIS WILL HELP0% (0)
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YOU NEED TO0% (0)
I do not have lupus nephritis as they just took more blood tests but since I am fairly new to being diagnosed, I remember very well that flank pain that started all of this off. I only found this website and convo as I was googling to see if there are pains when the nephritis starts up as I am having those pains starting up again. I too have found there should be no pain if it does start, which is why blood tests every so often are important.
I am very sensitive to my body and its sensations so it does worry me some that maybe there are a few of us that do pick up on it. as I said earlier, I have NEVER EVER had any type of urinary/kidney infection in my life. I feel there is a connection to it as well. Just wanted to put that out there in case someone else needs to see this.
Be well,
KellyView Thread
Hope everything goes well for you Teusday with your doctor appointment.
If you look over to the right side of your screen you will find links under helpful resources for information about lupus. It can help you prepare for your appointment. And, of course, you can always ask questions here. Usually someone will know the answer.
Good luck and let me know what the doctor says on Teusday !
LisaView Thread
# 1 was tempting as I would like to give this cold I have back to the office mate who shared with the class, but I confess to actually doing #4 more than once. If they send me that stamped, self addressed envelope I'm happy to send them back the junky inserts they just wasted my time on.
I hope you feel better soon!
K2View Thread
Take the Poll
Poll Results
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Find all the people who aggravate me and cough on them25% (1)
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Spend time with my 3 best friends: tequila , vodka, and gin25% (1)
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While looped on cough syrup, call my docs to ask "what up, dude?"0% (0)
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Stuff junk mail envelopes with other junk mail and return50% (2)
Sorry you had such a frightening experience! I'm not sure what caused your problem but am glad it wasn't your heart! Have you had any more episodes since returning home? Do you have a family doctor to follow-up with?
I've had pain in between my ribs - actually, I have a rib that dislocates all the time - lupus people are prone to get costochondritis. Do you think that might be a possibility?
I think you should definitely follow-up with your doctor to get some answers and I hope you never have another incidence like that again!
Keep us posted,
LisaView Thread
Come to find out that the Cozaar could do more damage. Now they've dropped my dosage and want me back in a week to retest. If my numbers don't stabilize or improve they want to start the prednisone. I'm not to worried about this drug although I know it will effect my anemia. But since anxiety and insomnia are side effects, the anemia might balance things out.
I really don't like the idea of chemo therapy drugs because of all the side effects. If a drug has a side effect I will get it in spades, I don't tolerate medications very well. I get sick from taking vitamins. Plus I went to the doctor because of the hair loss and the dermatologist was the one who thought I might have an autoimmune disease. I don't relish the idea of losing more hair.
Although it's good to hear from someone who has run the gamut of drug therapies. I will definitely use your experience as a guide.
Lisa T.View Thread
LisaView Thread
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