Hi honey,
I completely withdrawl when Im not feeling well so dont worry about not posting when you are down. But, we may be able to make you feel better or offer some advice to you...Most of us have been in your shoes and know how miserable life can be ESPECIALLY when you have young children (that would be ME too). Listen, first of all, I have made myself sick over MJ's death but not because of his heart but because of my fear of over dosing on drugs. I can almost guarantee you that the reason why his heart stopped was from the drugs he was taking in massive amounts. Some of which arent even used in any other place then a hospital. I understand your worry...I have APS which can cause strokes, heart attacks, etc. and I worry about having a heart attack or stroke constantly...But, when I start to do this, I start to think that I could also die just as easily in a car accident or by tripping and falling (which I do all the time). Re-direct your thoughts when you start to worry about that. Its not likely it will happen to you. You are feeling depressed because you dont feel well and did something that normal people can do, yet you just cant. Been there too. My disneyland day broke me for 4 days. I cried...

Ambien doesnt work for me either. I also have horrible insomnia. That issue alone causes us so many problems and is very frustrating. You started to feel better on the pred. but you just over did it....The pred. DOES affect our emotions....I am so irritable on this med WITH acne as well....Are you on MTX? That may be the next step for you.

Also.....Im not sure if you are on anti-depressants but if you arent, you may want to check into trying one...They can help your coping skills and depression/anxiety/panic so much. Many of us are on one form of it. If you arent on one, you may want to consider seeing a psychiatrist as they are much more knowlegable about these types of drugs than gps are. Not all the anti depression meds work the same for everyone. Paxil is the OnLY drug that has helped me. They also know of many other sleep meds that may work for you.

You have ALOT on your plate....What you are feeling is normal..Not fun, but normal.....even if your a negative nelly or "a downer" we want to help you...We dont look at eachother that way...We look at eachother as someone who is just having a bad day/week like we have had before.
xoxox
Melissa

Want to shoot much love your way! We have all been there and some of us are there even now. This is a group for us to support each other and if we never shared how bad it is, what would we need a support group for?!
Just to let you know about lupus and lifespans, we don't have expiration dates on us. I have been living with lupus for over 20 years. I got it when my kids were young too, and hey guess what?! I am still kicking, fighting and hanging in there.
My kids are all grown, and out on their own. No reason at all you won't be the same way. Just take as good of care of yourself as you can. I too had to pick and choose what I would do knowing I might suffer for it later.
One thing that is vital, when you are going through a rough time don't isolate yourself! you among ppl who love you and who really do understand! I don't care if you have to post something everyday just to get through, I will read your posts and I will offer you love and understanding!

Shadeseeker,

Prednisone is so great when you're feeling lousy, but the side effects are soooo bad. I've so been there (as all of us have) and every emotion you're going through is from that stupid drug. Insomnia, depression, hunger, restlessness and I don't know about you, but it makes me stupid! I'm bad enough from the lupus, but when I'm on prednisone, I become like a zombie. I hate it! So I know it's no consolation, but just try to remember that when the dose is lowered you'll be feeling sooo much better.

Please don't worry about Michael Jackson in relation to you. He was so messed up beside all of his medical problems. His life with all the fame was a tragedy - he died from many things that have nothing to do with you life. Again, I know it's easy to say to stop worrying, but just try not to add to all the other crap you're going through.

One more thing - I don't know if you remember we spoke about the trials and tribulations of living in Florida. I can so relate to feeling like a prisoner in my own home too cause it's SO hot and sunny out there - and I know we're in for a bad one this summer. So if it helps, please remember that there are people who understand exactly what you're going through so scream as loudly as you like!

Take care and try to stay cool - yeah, right!

Dale

Yes the prednisone can really mess you up. I also have had lupus over 20 years and am still here and have a beautiful grandaughter. MJ unfortunately as so many famous people do fell into the over abuse of drugs. I don't think there is anything in comparison for you. hang in there hon it will get better. hugs marilyn

I know what you mean about going stir crazy. I am here with my daughter all day and it is 100 + outside during the day so we can't go anywhere outside. Due to me not working, we can't afford to go shop or whatever indoors either. So I really can't wait for Fall. I used to be a summer person all the way. Your not alone!

I have been where you are, re post me and lupus. I wear the mask for my family, through the pain and the losing hair putting on flab, but i wont let lupus control me, i am trying to control it. you can to fight it!

Ann x

Hi Shadeseeker,
The 4 of July did a number on me too!!! I was finaly feeling good, because the Plaq. was kicking in-so I went to a family gathering and I think I pushed myself-staying out late, and the long drive, and the heat..-Since then I've had, i think the worst flare so far...=( I feel like it gets worse everytime...I live in So. Cali. this entire week -there is a heat wave-so I can just be a hermit in my home----My girls are 10 and 9--they will just have to find things to do--I had some energy to do some writting with them. Have you tried to write?--that really helps me vent-I have a journal, and I think writting your thoughts can help--try it....I tried anti-depresants before, but had a terrible reaction--I felt worse on them--Now I have to try and be strong to fight this pain--
---Has anyone tried herbal teas to help them sleep?--I will often drink a tea with Valerian root, and Passion flower, and Tila---Helps me relax...
Wishing you the best--Hope you can kick off this flare--lets stay positive....=)

Thanks so much for all of your replies. Each and everyone helped me & I took something from them. I took 2 days away from DS and just had my husband take over when I needed to nap during the day, got out a bit at night to window shop - no money either :) and did some scrapbook type stuff that was very therapuetic and relaxing. It helped a lot. I am still flaring, hating the scale, mirror, sitting up at night waiting to fall asleep etc. but I feel better emotionally and I know I need to be on the steroids for my health and all the other side effects are temporary.

Melissa, you are so right that anything could happen tomorrow & I can't focus on dying. You always know just what to say to make me feel better. Grammy & Dallas, it is so encouraging to know you both were diagnosed young and have granchildren. I hope I am as blessed and will do everything in my power to make it happen. Grammy, I always isolate when I am depressed and it is so hard for me to be vulnerable in front of even my closest family & friends. It is so nice to have a safe place to turn to rather than run from like I usually do. Dale, my fellow Floridian, glad to know you are in the same hell as me lol! I look at the 7 day forecast a

I hit send by accident! Anyway, Dale, I see the 7 day forecast and my stomach just drops. There is NOTHING to look forward to weather wise for us lupies. Ann, your post with your new picture - your honesty meant so much to me and I think you look more beautiful than ever. But I know we are our own worst critiques. When I look in the mirror, all I see is my malar rash (and now my pimples!). When people tell me they can hardly see it, I get angry because I think they must be lying because it is all I see. Alison and Want to Be, I wish all of us and Melissa and all the other moms with lupus lived near each other so we could have play groups that were good for US. We could take turns napping while our kids played inside lol.

I don't know what I would do without all of you. Jsut venting made me feel better & then getting the replies and realizing I was not alone made me feel so much better. Thanks for taking the time and I hope I can someday be there for all of you as much as you have been there for me.

xoxo

I know how you feel on the steroids also, they did all the same things to me...I would rather deal sometimes with the pain then take those again. But that is me....it is hard enough on me to cope with all this and then cope with what that drug does to me. I hope you are doing better and enjoying your kids and the scrapbooking :o)

hugs,
paige

Dear Heather,
Thats a girl!!! Hang in there--Im glad you did some scrapbooking and got your mind off the pain for a while at least. What kind of meds are you on? Have they given you Plaquenil yet? I think It has helped me-I was so scared to take it, but got positive feedback here on DS---But nothing is worse than being in PAIN----we all have to unfortunatly live like this--hopefully with better days than worse ones.--Lets pray-that we will get better--our kids need us--and we have to stay strong for them.
You take care of yourself--and hope you feel better soon....Keep us posted.....=)

Hi Heather - it's Dale again. Just wanted to say that I've always wanted an actual friend who had lupus and it's never happened. I have all sun loving (wonderful) friends but they could never really understand what I go through. They try but of course really can't.

Are there any lupus support groups where you live where you might meet some young mothers who have kids? Just a thought.

Take care (it is SO hot!!)

Dale

Its ok if you don't have just good things to say. We know your not perfect, and living with a chronic disease will play on your emotions, and the drugs don't help with that. Lupus runs a more serious course in males so that might be why his was more severe.

Yep I have seen a couple groups in my area for fibro/lupus but I don't know if I would have the extra energy to go,lol. Wish I could just start one here. We have each other here, maybe we could swap pics of our family. I don't really like to put pics on here but I will send you my email. I have a website of pics of my daughter.

Prednisone can be so wonderful and so terrible at the same time.

Wonderful to me because it stops pain and rashes.

Terrible to me because it makes me eat everything in sight and doesn't allow me to get a wink of sleep, no matter what I take on top of it.

You should not be embarrassed for venting online. That's what DS is supposed to be for, at least I thought so.

As one doctor told me, "if you weren't depressed in this situation, you'd be crazy."

If you let it go now and then, so what. You need to release it. And people who don't understand aren't your friends.

Thanks again everyone for all of your support. I always wanted a lupus friend too Dale. I thought for sure when I moved to FL there would be a lot of people with lupus but I guess not everyone is a gluten for punishment like you, me, wolf & gidget lol! There is not a support gtoup locally. But I am probably better online right now anyway with my little guys. And you know those lupus walks tear me up too - the one in St Pete was in a field! Sorry, but that would make me sick for weeks afterwards if I spent that much time outside in the sun walking. I don't understand it! Wanttobe, I am on Plaquenil and a bunch of other meds. I am only 2 months into the plaquenil after quitting for pregnancy and breastfeeding and it takes me 6 months to feel significantly better so I am just waiting at this point. Paige, I don't like taking prednisone either because I have osteoperosis & 2 fractures already (and I am only 38) so I worry that it is going to make my bone density even worse. But i have been in such a long term flare my rheummy thought this was the best course of action short term. Alison, that would be great to start a lupus/moms group online. I know we have very unique issues
(like the sun) that no other moms can relate too and it makes ne feel very alienated and different than other moms. Wolf, I am sorry to say, I am happy to know you eat everythign in sight too and can't sleep no matter what you take because I was really starting to feel like a freak! It is just the worst, especially when clothes that fit me last week are suddenly tight. That just gets me more depressed. But your doctor was right and I am going to remember that one - if I wasn't depressed in this situation, I would be crazy. So thanks again everyone for being there & letting me vent. I may be down but all of your support makes a huge difference and for once in a long long time, I no longer feel alone with my disease. I knwo all of you out there understand and canrelate and that is such a good feeling.

xoxo