What you've just said mate, is actually the best option because we're never 100% and keep explaining does your head in.
I have read the post by giggles several times and I have started replies often. I never seem to finish them because I can't wrap my mind around what I want to say. sadly, she is basically correct. There are the RARE few that go into a full remission but it is very rare. What we try to get to is a place where the disease isn't as active as it was before. A place of "mild" lupus that is still lupus and we know it. On top of that many of us end up with overlapping diseases so we also have those to deal with.
Having said all of this I want to be very clear that knowing you that you will have to deal with this disease for life doesn't mean that life can't be good. Yes, we have to get on the right meds and get things under control. This is the first and most important thing. Like giggle I went on the doctor Merry Go Round too long and my body is damaged from it. That is why I am SO quick to say "get another doctor". Starting meds as soon as you can is one of the first things that has to happen if you want to be able to enjoy a life with Lupus. Next you have to learn your limits. You have to learn what things make you sicker. If the sun bothers you, always stay prepared. I keep a bottle of suntan spray for my body (70 SPF) and a cream for my face (100SPF) in my purse. I always put them on before getting in a car because, depending on the amount of tint in the car I could have trouble with the sun. I wouldn't do these things if I didn't have Lupus so it is a change to my life however doing them allows me to still participate in my life without making myself feel worse.
There are many things we won't be able to do but we can find new things that we enjoy. For most of us our lives have changed forever. We are not going to feel the way we did before we got sick but we now can appreciate the days that we have. Although I wish I hadn't been diagnosed with these diseases I can say that I have learned a lot because of it. I have learned to appreciate life. I have learned that I can live on much less then I had before and I don't feel that I have lost anything. I am learning as I go but I am doing my best to find joy where I can.
So, I guess what I am trying to say is that yes, giggles is correct however please don't think that life is over. Take care of yourself, fight as hard as you have to fight to get diagnosed so you can get on the meds you need before too much damage is done. Do whatever you have to do to keep yourself from getting worse. Take precautions so you can live a new life on a new path without being in bed each and every day. For most of us it is about keeping pain and fatigue manageable not really gone. We adjust and sometimes we find that there are joys on this new path we would not have found without going through the trials of this disease (Thinking of Rob and the racing).
Hopefully this made sense. Having some brain and body difficulties today so if it doesn't make sense just blame it on the fog
Last edited by tgal; 05-29-2011 at 11:14 AM.
Success is not final, failure is not fatal: it is the courage to continue that counts.
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It made sense alright mate and came over as a great comment.
The sooner i'm started on meds hopefully my life can pick up, as i'm sick and tied everyday of life being such an hard trial with pain and walking.
I used to be able to track my flares, but now my meds are starting to work, and the symptoms that used to warn me one was coming are way less intense. I would get super depressed for a few days. Then these tender bumps on my hand would pop up. Then all my joints and bones would start popping more than usual. The next day I'd be laid flat, pain all over, trying really hard not to give up.
Prednisone has helped the pain a lot. Prozac is my new best friend. I had a hard time accepting that I needed help with the depression. I'm done fighting that stigma now. If drugs can make me feel better, I'm taking them. I'm still fighting with Plaquenil though. We have a love/hate relationship. I'm having all the negative side effects of the drug, and the positives haven't kicked in yet. They're gunna though. I keep telling myself that.
So that's the flare stuff. Sorta. But I'm really replying to this thread cuz of the Lupus forever stuff that popped up. This is the part I'm still struggling with. I wake up every day knowing that I'm sick. It's literally my second thought of every single day. (The first one is "Man, I REALLY gotta go to the bathroom!) I have a fantastic support system. I moved back in with Mama when I started feeling bad last year, and she's amazing. She's gotten me all the medical help I need, and she's super understanding about me only having the strength for a part time job. But there's this pressure, always, to get better. I'm sure you guys know what I mean. People say things that are honestly meant to be supportive, but when it enters my head it become stress. Things like, "You're going to be feeling so much better soon." And "You had two really good days in a row! You're getting better!"
I don't want to bum people out, so I do what Giggles does; I smile and nod. But for me a huge part of this illness is the incurable factor. I know it's always going to be there. I know it has changed my life forever. I'm usually awesome at change, but this one I don't control, which I'm not ok with.
Ok. The bright side:
I now know that there's a specific, scientific reason that I feel like crap. It sounds ridiculous to other people, but lupies get it. Knowing that you're not just weak and lazy, having proof of that, is amazing.
I have meds. Beautiful, magical meds, that I had to fight for a year to get. What I was saying about the meds masking the signs of flare? I'm ok with that. I haven't had the hand bumps or the ultra-depression in a whole month.
I'm trying to wrap this up, to tie it all together smoothly like I used be able to. LOL, not gunna happen. Which is appropriate, I suppose. I'm not the person I used to be. It has become tricky, being me. Nothing is smooth anymore. But that doesn't mean it has to be bad. In fact, I think life has become a lot more interesting. I don't coast anymore. I don't fly through days, weeks, months, loosing time. I have to be conscious of everything, ever moment, like I've never had to be before. It doesn't take a giant event to make me feel alive anymore. Yesterday I went out to eat for the 1st time in weeks. It was amazing.
So yeah, it's strange to be us. It can hurt a lot, it can slow us down, and it can change us entirely. But it can also make every second matter in a way it didn't use to. Which is kinda mind-blowing. Today, at least, I like being us.
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Nice to see your on here tonight and i am pleased the meds are helping your symptoms, i would'nt touch prednisone being a steriod so i had plaquenil for 12wks my skin started picking up great at 5wks but like you said we had a love/hate relationship i found some of the side affects abit to much for my system and refering Prozac they helped me but my system wanted more so i was took off them and done a right cock tail in 25yrs so i'm banned from them mate.lol
Although your moms been your shoulder and got you great help sometimes it can feel like pressure, thinking your body needs to get to better standards on meds and people helping but it does'nt work that way with the Disease, alot of member's have really mentally took the Disease on and fight through the days and there's other's like myself find it mentally hard and struggling, it does ware you down and how you feel sick each morning, i dread opening my eyes to what state i'll wake to (will i be cramped, muscles spasms, paralised, the list never ends) but you definitely need to pace your body to go with the Disease and on better days push abit harder then, well that's what quite a few of us have found better and you definitely don't need stress as Lupus thrieves on that and depression and can make your symptoms feel abit stronger.
It's not about suiting other's although you've been helped so much, it's going at your pace with the drugs to coping with each day that comes.
I really admire your strength to carry on and fight it, it's like a challenge to you and your looking at it in a great direction.
((Hugs to you Terri)) xxx
Last edited by Peridot20_Gem; 05-29-2011 at 02:09 PM.