OMG!! Who AM I???

Hey Jennifer! I am so glad you have finally caught a break and I hope it can last! Thank you for posting this, it can give hope to so many of us who have been in a constant flare fore months or years!!!

Hope your lupus continues to lay low :)

Bless you both. I know this is no cure and I'm sure the end of this sunny day is around the corner, but my blinders are on and I'm going to be as normal as can while still avoiding sunlight and following all the doctors orders and such. It just feels good to not to feel so bad. Thanks.

Well, everyone, this is day four.  The last three days have been great!! I've been out and about happily running errands with the two boys intowe.  Yesterday, I gave my two 60lb dogs a bath, picked my 7 year old up from school, ran to the pharmacy, the grocery store, came home made a simple dinner, played with the kids a bit, and got them ready for bed.  I was tired but not dead exhausted.  I had joint pain in my hands but nothing that wasn't manageable with the pain meds.  This is day four, I feel fine and normal as long as I take my meds.  I'm not going to even try to get off anything for while, it's been four years since I've felt anywhere near this good and I surely don't want to start any tapers just yet.  I want to enjoy this ride and make sure it lasts.  Thank you all, THANK YOU GOD!!

On a side note, my husbandd has hurt his back and has been laid up for the last two days.  He feels that this may be some Divine message sent to us to show us what the other person has been has been dealing with all these many long years.  Lets hope his doesn't last nearly as long as mine, ya know what babies they can be at times. LOL  But ya gotta love um.

Thanks Donna. It's day 5 and still no fatigue and the pain is finally under controll with meds. I finally feel human. What a Blessing to go to Church today and tell people I felt Great! To see love and joy on their faces instead of pity and sadness was so uplifting. That was the greatest Mother's Day gift of all. I am listening to my body, though. If I start to feel a little tired I stop what I'm doing and take a break to rest, instead of rushing to finish something something before the big crash leaves bedridden. What a difference. I pray you all find just a little of this peace, even if it's short lived. I know the beast will find me again someday, but that is something I will worry about when that day comes. God Bless you all.

Thank You Jmom. And I couldn't not share. I know how hard it is to find any kind of hope with this illness, and sometimes the future can look so very dark. I would look into the faces of my two little boys and only see all the things I couldn't do for them, there is still a lot I won't ever be able to do since I really have to avoid the sun, but at least I finally have some emergy for playtime. I hit a point a such helplessness that had to give it all up. It was too much for me to worry about. I told God, I will keep my Dr appts, take my meds, keep track of refills and symptoms etc, but the worrying I give to you bbecuase I no longer can afford the energy it takes. That was a very good step for me. By the way. My doctor told me that a daily multi vitamin may detract from your energy. Daily a,c and e takes a lot of energy to break down. It easier on your body to get them from fruits and veggies and just take a supplement once a week, but daily B vits, D and calcium are good, just watch out for high artificial antioxidants, because they can wipe you out. He did this himself and really noticed a difference. Peace to you all.

Thanks Babs, Of course I'm overdoing it! I've been living like a zombie for nearly four years and I'm now on day six. I did have to slow down because Sunday night was up a little too late with hubby, hee, hee. I have been trying to listen to my body though. When I start to feel tired, I take a break and rest, but I don't quit for the day. I guess there is a part of me that knows this can't last forever with a disease like Lupus and I don't want to waste a single day. There are still things I can't quite due because of the hand pain, like beading or sewing. Maybe that day will come maybe not, but at least I got my house clean, my dogs washed, laundry caught up, played with my kids, ran multiple errands in one day and even had time to be a wife. It's the lack of energy that makes everything so horrible. I still have pain, but it just doesn't seem so hard to live with now. Take care and God Bless.

Thanks Pat, I was wondering though, one of my sun problems is weird headaches. I was sittingin the nice cool shade today today. It wasn't hot, it was shady and there was a nice breeze. Should be perfect, right? Wrong. The sunlight that came through was glring off the leaves, blowing in the wind with a strobelight effect and boom! migriane triggers start pouring in. It's the same way when I'm driving through shady roads, or the light comes in through my kitchen window. Any suggestion? Thnks. Still feelingpretty good fatigue wise and this is day 7. YEAH!!!

Thank you, Jesimae and to everyone that has replied or even peeked in to see what I meant by this crazy topic thread title. I must give a little update, not to make anyone jealous or to brag but to give warnings and advice. This is day 8 of not feeling totally crappy. I will say that I had a set back on Monday and Tusday from trying act like a normal supuer mom for five days striaght. Running multiple errands for hours with a seven year old and a two year old(both boys) every day, staying up til 2:30 to actually spend time with hubby. You know all the things that used to be a part of our lives before we got sick. I just wanted to pretend that it was all gone. Not really a smart thing to do. I forgot that Lupus likes to change everytime it rears it's ugly head. I had a bout of fatigue for a couple days and now some new symptoms are popping up. It's like things just changed. Like I said the hand pain never quite went away, but there is a ton of numbness. This morning I thought I took my pain meds, but they fell out of my hands and to the bathroom floor and I never noticed.(luckily one of the things I had managed to do was scrub the floor), I kept wondering why I was hurting so much, that is until I went to the bathroom and saw it lying there. I'm extremely light sensitive, glares from sunlight and flourscent lights give me migraines. I'm having a lot more difficulty typing the right letters, my backspace key is wearing off. I'm even having problems saying the right word and I don't even notice I'm doing it. Overall, I still feel so much better then I did, that I hate to have to worry about these things, but it just screams CNS LUPUS that I know I'll have to talk about it with my Neuro next week. I know I'm feeling better, and I know I have to be much more conscious of the fact that I am still sick. It's like when you're taking antibiotics, you're feeling better, but you have to keep taking the stuff or you'll be in worse shape then you sarted off in. Forgive my rambling, but I was an idiot and just wated to make sure none of you made the same mistake. I'm going to be making myself rest the next few days, to make sure I can continue to feel good. Take care and God Bless.

Well, going from the beging, this is day 16!! I had a couple of crappy days, where it seemed like a nasty flare creeping up in form of some new CNS symptoms, but some of that was due to really over doing it and some was some side affects to Topomax which is actually starting to help calm the migraine situation. I'm still feeling better overall, especially in the area of fatigue and the pain situation is actually under controll with the Lortabs instead of just having the biting edge taken off. So it's not perfect but I'll take it. The weather has been really bad here lately too, so maybe when it gets better, I'll feel even better when that improves as well. Take care and Blessings to you all.

Well, Here's a little glitch is the good feeling days... my kids got sick. This meant three days of Mommy wiping noses and Mommy snuggling with Mommy getting drooled on with said snotty noses, not that I usually mind so much, but when you're on MTX you know that means. I am now much more sick the kids were and I still have to take care of them with school out for the older one and the 2 1/2 year old always a hand full evne worse when he doesn't feel good.. DH finally has a lot of work lined up and Thank god for that, we need it desperately, but timing always stinks. So I'm sure I'm better off then if this had all happened a month ago, but it sure is raining on my parade. I'm sure you all won't believe this, but we will all be jumping on a plane and heading off to Miami in mid June to Miami to see the Granparents. Yes, Miami in June, ans Yes I'm nuts. But Grandma is 85, and the baby has never been to see Grandma's friends. We do what we have to do for the sake of family. I'm well enough right now, who knows what another year might bring with me or with my mom, so were just going to go for it and take all the precautions we can(mega supersuncreen, umbrellas, misting fans, etc, and no beach for me) and make the best of it. Wish me luck.

Lights filtering through venetian blinds, and the combination of lights and fans both trigger migraines in me. I'm glad Topomax is helping you. I loved Topomax when I was on it because my weight just fell off me. But it made me real stupid!