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Hope for Remission
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Christine Miserandino posted:
Sometimes when I think of a lupus remission, I feel like I'm Dorothy in the Wizard of Oz, searching for a magical place, like the Emerald City. I wish I could just click my heels three times and get what I want. However, after living 18 years with lupus, I know remission is a much harder place to get to. Is it only in my dreams?

At the beginning of my life with lupus, I searched and hunted for the elusive lupus remission and did everything possible to achieve it. Yet, when I did feel better I wasn't satisfied because I wasn't perfect. I still had to take medicine and take care of myself. I was still low on energy and still had some pain. I wanted to be cured. We all know that there is no cure for lupus. But at the time, I associated remission with being "fixed." Now I would trade any day for one of those early days of feeling better. I guess you don't appreciate what you have until it's gone.

Later in my life, as my disease progressed and complications arose, I changed my thoughts of remission to "just feeling better". I redefined my expectations to being able to live my life, to feeling better, and not having active disease. These goals sounded more reasonable and more attainable.

Looking back, I think I've had years of what I define as remission. I've had great years that required less medication, no appearance of lupus complications, and a high-functioning life. I appreciate the year before and during my pregnancy, when I was healthy enough to have a child. I have a whole new appreciation for good days, and I'm not necessarily hunting for the perfect remission. I no longer see my doctor as the wizard who can grant my wishes, but instead, as a team member to keep me as healthy as my body will allow.

How do you define remission for yourself? Have you been in remission or are you currently in remission?
- Christine Miserandino
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renalupie1 responded:
I really liked that post!

I have been in remission for almost three years now. I get the occasional depo medrol shot to control the achiness. But other than that, no pills! My lupus is very mild and very much triggered by stress. I do make sure I don't overdo it sometimes. Make sure I rest, keep stress at bay, etc. Sure don't want to get my cane out of the mothballs!!

Rena
 
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candi619 responded:
I totally understand. This past you has truly sucked for me. Increases on meds weight gain from the meds. I feel partially depressed lol I just think of what I used to feel like 2 years ago before I was diagnosed and how active I was and happy. These days I'm just not feeling good. I'll have one or two days of very little pain bust usually I wake up everyday thinking "hmm lets see what's hurting today" when I get out of bed..
My Dr. Wants me to try this drug study he says the patients he has on it now are doing pretty good. At this point I'm almost willing to try anything for some relief. I was just telling my boyfriend the other day I didn't want to get my hopes up but the thought of feeling "normal" again makes me smile. Oh remission how I long for you! lol
 
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Christine Miserandino replied to candi619's response:
Hi Everybody,

The good news is that I have been feeling really good lately, and for a good amoutn of time (4-5 months). What is funny though is that have gotten used to feeling bad and living in flares. I actually find myself "waiting for the other shoe to drop" so to speak and I am waiting for the unknown, or when the next flare will come. I wish I could just live in the moment and enjoy these times where I am feeling good. At what point does feeling good become normal and I can just relax with it a bit?

Does anyone else feel this way? When you are feeling good for a length of time, is it hard to believe?

Love and Spoons ,
Christine
 
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jenni94loopy replied to Christine Miserandino's response:
I am glad to hear you are feeling well. You deserve it because God knows how many people you have helped and lives you have touched on here and your other website. I can relate to the "waiting for the other shoe to drop" because living w/this disease(s) is so unpredictable. Hard for someone who was a planner, but I try to remain positive. I hope someday this all fits somehow. Hope your good days stay for a long while. Sending spoons.


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