What to expect

HI Everyone.....

I am new to this whole lupus flare thing and I keep thinking I should be starting to be able to have some normal days. I was diagnosed the end of Dec. and started treatment. I am currently on 15mg prednisone and 2000mg cellcept. My days just seem to yo yo back and forth from okay to barely okay and some good and bad thrown in. The fatigue is so bad that I can never have a normal day. When I wake up and I feel good I think the meds are finally working to only crash in the afternoon and the next day feel so sick I'm in bed all day. I just would like to know how long will this last? I am so used to when your sick, you know you will be better in a week. My dr said about a year, but will it be a year of struggling to be able to keep up with normal daily activities? I'm having a hard time figuring out what is priority or what I will be able to do and what I will not be able to do. At this point it feels like not much. Any help or advise would be appreciated. Thanks.

::hugs tight:: This is the thing that drives me absolutely nuts about having Lupus. I understand that others are facing organ failure and have much more serious concerns, but for me, this day-to-day uncertainty is what makes me the most angry and feel the most helpless. I had a day last week where I felt FABULOUS in the morning... then after lunch I felt HORRIBLE, took a brief nap... then the evening I felt semi-decent. Talk about frustration! Most days I'm not quite so dramatically back-and-forth, but that seems to be the theme of my life currently overall. I have resigned myself to simply having to deal with this at all times, on all days. Even days where I seem to feel like my old self, I know it will not last. It's sort of the opposite of what you were saying about when you are sick, you know you will get better.

I don't mean to sound so doom and gloom, but I face this same struggle you are talking about. Sometimes I can conquer it with positivity. Sometimes it is something I can endure. Sometimes, though, it gets to me and I rage or weep. But in the end, I do what I have to in order to keep moving forward. I've been diagnosed a year now. I'm on prednisone and two chemo drugs (methotrexate and azathioprine). What I would have called a normal day before all this no longer exists for me. That previous 'normal' day is a very excellent day now, something to be treasured and savored, held close to my heart against the darker, more difficult days.

I haven't really got any advice on how to face it all, to pull through the other side, because I'm still figuring it out myself. But I did want you to know, you are not alone in this bafflement at your old ways being gone, the desire to get them back. In December I had a week or two of really wonderful days. I was SKIPPING in the grocery store with the cart! When I told my son about it, he gave me a strange look. "That isn't like you," he said. That made me so very sad! "Actually," I replied, "that is what I am like inside, what I used to be like. It is very much like me. What I'm like now is what is not like me." And it's so true. I am a very bouncy, cheerful, energetic sort of person... when I have the energy and strength to be so. It still comes out in other ways, but that physical aspect of my personality has been forced to change, and did so very slowly over time, without me even being quite aware of it slipping away.

Hang in there hon, and know I am here, hanging in there with you, along with so many other good folks here who know exactly what you and I are struggling with. Together we will make it through. Life may not be what it was for us, but that does not mean we can't make good things out of it anyway. That's why we are here, to help each other in new ways. ::hugs again::

Thank you Talencia, and I want you to know that I admire you because the energetic, cheerful, bouncy person is still there. She is there in all of your posts. I can see her. No matter what, you seem to be upbeat and have the right thing to say. I know I am getting better. In Dec. I couldn't even speak and I was hallucinating. My mind is clear now. I long for the days of going to yoga and riding my bike through the woods. I just pray those days are not lost forever. Your right there are times we need to rage or weep, I'm just not used to such an emotional roller coaster. I was always the positive, happy, glass is over filling person. So it's been a year for you, have you noticed any improvement? Or would you say this is as good as it gets? Thanks again, I really do enjoy reading all of your posts, tons of uplifting positive thoughts. Hugs back to you.

Hmm. The question of whether things have improved is tricky. Yes, I believe they have... in some ways. Generally I think I sleep (extra) a lot less than I used to. We'd already gotten my noticeable inflammation in my hands and feet under control by the time I was diagnosed, but I might venture to say that's even more under control now.

However, the question of "am I better?" has been one I've been struggling with since the start of 2015. I feel like I've gotten worse beneath all my medications, if that makes sense. But since we keep increasing the meds as well, I kinda feel like I'm in an odd stasis. Not better, not worse, just... cruising. For a bit I DID feel worse... more days with butterfly rashes, more pain, an increase in tiredness. But as all things, that didn't stay either, and now I'm on a week of mostly good days. Augh, it's so hard to get a grip on where we are with this disease! Blood work is no proper means of telling... visible symptoms come and go... what we feel fluctuates wildly with no idea whether it's that we overdid, that we are having a flare, getting worse, or maybe the weather or sun or who knows what has influenced how we feel.

Sad to say, I have nooooo answers for you, even concerning my own progress! That's part of why I find it so encouraging and uplifting to see folks here who have struggled for much, MUCH longer than you or I, who have survived and have kept moving on. It gives me hope that it isn't all darkness and pain, that we CAN learn to live with it, even if we never can be rid of it. That's why I love coming here and being a part of this community. It helps me have courage when I feel lost, and helps me look beyond myself. It's nice to know I'm not alone either, and that I have you and everyone else to lean on. Thanks so much for sharing, reddog!

It does help to see that we are not alone and to hear what everyone else has and is facing. Lupus has so many different faces I just never realized. I know a lot of people suffer from pain with lupus. I do not get much in the way of joint pain although I do get migraines. My lupus is different. I get vertigo, nausea, trouble with my limbs(feel heavy), ect. I do not get the rash or any of the normal lupus symptoms. This forum has enlightened me to the battles everyone faces and yes it has given me courage to press on.