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xani's mom
11-07-2010, 06:57 PM
I have read through a lot of the posts on here, and I am still kind of confused about something. Do some of you guys go into remission? Or I guess what I am asking is what are you calling remission and what are you calling a flare?

serand4
11-07-2010, 07:10 PM
I'm with you! When can we look forward to remission? What are the signs? I'll keep an eye out xani's mom and if I see anything I'll let you know.

tgal
11-07-2010, 07:44 PM
I hate to the the one to tell you this but not everyone gets lucky enough to have periods of remission. Most of us get times when things are going better then they were or when the Lupus goes from a more severe to a milder version but remission is not in the cards for everyone. A flare, on the other hand, is when the disease is going full force. The days (weeks, months) when your symptoms, and usually your tests, are clear reminders that you have the disease. You know those mornings when you wake up after 9 hours sleep and can't force yourself to get out of bed? The day the brain fog hits so hard that you can't remember your dogs name and you have had him for 5 years? The days your joints hurt so bad or your rashes decide to come out in full force? Those are signs that you are flaring.

A flare is a bit different for each of us because the disease is different for each of us but hopefully you get the idea

xani's mom
11-07-2010, 08:54 PM
O.K. I thought maybe a lot of people got to experience a remission, because I have never been that lucky. Honestly my doctors never even mentioned it was possible, which kind of upsets me. On average I feel good maybe a couple times a month, and that is what I define as good now. I can't imagine feeling what I defined as good 10 years ago. I have read and read, articles,books, internet stuff I don't think I have read anything about remission. This is why I joined this site because there is no value to the info others who suffer have. Anyway, not feeling well most of the time is normal? I don't mean feeling horrid, but just yuck. I know a lot of the high powered meds I'm on cause a lot of this, but it is pretty normal for you guys too.

tgal
11-08-2010, 06:54 AM
Hi Xani's mom,

Yes, we all learn a new "normal". As you mentioned above many of us define our lives now by days, "good day or bad days". You are not crazy. Like you my feeling good days are few and far between and good is a relative term (meaning it is not the same "good" as it was 10 years ago).

"Just yuck" sums it up perfectly

SandyR
11-08-2010, 08:07 AM
tgal did a wonderful job of explaining this to you. Personally, I think of chronic illness like a personal rollar coaster ride we all take. Some of us have a lot of hills to climb, some are thrown for big huge loops or tossed down big impending slopes and others have relatively "boring" rides. All in all, it's so different for everyone and all the same at the same time.

magistramarla
11-08-2010, 07:45 PM
Hi Heather,
I agree with what both Tgal and Sandy have said. I've grieved over the way I felt 8 years ago when I went back into teaching. I used the stairs and strode happily through the cafeteria, doing "duty" and joking with the kids. By the time I left that job, I couldn't do "duty" at all and I was pushing a rollator through the hall and sitting on it to teach.
That said, I think that attitude has a lot to do with how we cope with all of this. I've adjusted to my "new normal". I'm living a very low-stress life now, but I'm still involved in life. I do volunteer work with a social group and I get out as much as I can to "do lunch" with "the girls". I've learned to enjoy resting on the couch with the cats, watching the Food Network. My hubby loves it when I find the energy to try out all of the new recipes that I've learned.
My life is very different now, but I can't say that it is all bad.
Hugs,
Marla

teresaa40
11-08-2010, 08:06 PM
Gotta chime in on this one.

I, thankfully, have had long periods of what I guess could be called a less active phase. There is never a day without pain, somewhere. There is never a day when I feel like I could conquer the world. I do have days when I get a lot more done than on other days, simply because I just get myself up and do it, for as long as I can. I always, and I do mean always pay for it, but, I am still glad I did it. It seems my disease is all about the flavor of the month, with several main focuses and then the usual underlying things. This month it's my left arm and wrist, my right thigh, and my eyes. sigh.

xani's mom
11-09-2010, 08:24 PM
I also have a bit of "flavor of the month" I think. I hadn't had a headache in a long time, and then for the last two weeks I have had a constant headache. It's not a throbbing migraine or anything just a constant dull ache. Then for about the last week it has been the UC rearing it's head so I get to have my headache in the bathroom most of the time. I know if I go see the gastro there will be procedures, that I could do without. So, I am just hoping it calms down. Of course when you have one acute problem going on the chronic ones are harder to deal with. I'm working on the positive attitude thing, honestly, but it's a slow process.
Truly-Heather

MrsPony
11-10-2010, 02:15 AM
LOL... 'Flavor of the month"... I like that! I feel like there is always SOMETHING! I left eye was a little puffy the other day... today my right calf is feeling weird... tomorrow my left ankle will probably hurt...

My 'normal'/remission periods usually still have some swelling, joint/muscle pain/aches... But when I get a flair it's usually a fever/chills, the feeling of glass in my joints, and I think I've just noticed that my gums and teeth hurt as well and the fatigue is even worse.