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Three kids who still want there chocolate milk!!

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Posted 8/10/2007 10:04 PM (GMT 0)

Hi.  I'm totally new, and still in the testing process.  However, I'm in severe pain everyday.  My husband is the best!!  My kids are young and don't really understand.  My girls do alot of cuddling and sad crying.  My boy is just angry.  "but you promised to take me to the pool..."  I find myself losing my temper with him when the pain is so bad I can't move.  I'm still in the new phases of this, and I'm angry too!  How do I explain to a young child, whom I love so much?  I welcome any advice I can get!  Thank You!

Posted 8/10/2007 11:18 PM (GMT 0)
3gifts,

Welcome to the forum. I'm sorry you are in so much pain and I hope that once you get through the testing process your doctors will have a good idea how to treat you. Are you on any meds now?

You don't say how old your children are but I gather they are very young. I don't blame you for being angry, especially since you have severe pain. Do you have a significant other or someone who can help you with your children? My kids are all grown and I can't imagine the struggle of having to take care of young kids when you feel bad all the time.

I don't give my granddaughters, who are 6 and 8, any details about my illness but when I'm feeling extra bad, I just tell them that I don't feel well and ask them for their help. I think little kids need to know that they are loved more than anything else. If you can keep your anger from them and enlicit their help doing things you normally would do for them, they may feel like they are being helpful as opposed to feeling like they're a bother. I don't promise my family anything at all. It's always, I'll be glad to do so-and-so, but let's see how I'm feeling when the time comes. That way I never have to break a promise.

I hope you have family or friends that can help you with your kids. If you're in that much pain, you need a break from them and they may need a break from you as well. A good support group can be such a godsend.

I'm so glad you're here. There are a lot of wonderful people here who have lots of good advice and suggestions. Let us know more about you. And good luck with all your pain!

Pat
Posted 8/11/2007 12:16 AM (GMT 0)
Hi, 3gifts. Welcome to the forum. I'm fairly new here myself, but you have found the right place for support. Like Pat said, a local support group is great if you have one available in your area; but someone caring, and understanding, who has experienced just what you're going through is right here at any time. I'm sorry you are in so much pain right now. Hopefully, your doctors will move quickly to determine a correct diagnosis and fit you with the medicine you need to get that under control. When you're hurting though, a week can seem like a year! Tomorrow doesn't seem to come quick enough. I don't have children myself, but I have read several books trying to cope with my lupus diagnosis and learn about this disease. Two books immediately came to mind as they seem to offer more than others regarding explaining things to children and how to handle them with "kid gloves". In "The Lupus Handbook for Women", Robin Dibner, M.D., and Carol Colman do a fantastic job of covering this disease. In Chapter 9 "Living with Lupus", you'll find tips for coping with the initial diagnosis and managing your life. Following that there are sections dedicated to coping with children, what to tell the children, understand their anger, dealing with energetic children, spend time together--no matter what, and stay involved in their lives. Also, the book "Coping with Lupus" by Robert H. Phillips, Ph.D. is a good source. His entire Chapter 30 is dedicated to "Helping Your Child Cope with Lupus". He is a psychologist, so he is very easy to read and he looks at the emotional effects of this disease in ways you might miss about a child's understanding of it right off. Your local public library may well stock some books on lupus, but my favorite place to find them for myself so I can have them to refer back to, is my local used book store. It's a lot less expensive than purchasing them new, and lots of times the latest editions are already there! I wish you well. Please keep us informed on how things go for you.
Posted 8/11/2007 2:28 AM (GMT 0)
Thank you very much! I will definitely look for those books, as well as just enjoying my kids and realizing when I need a break, they may too! It looks like I've come to the right place for understanding and a "cheering section" ! Again, I really appreciate the help!
Posted 8/11/2007 2:39 AM (GMT 0)
Pat, to answer your questions, yes I do have a support group around (husband, neighbors, in-laws) but when it comes to some things, I've always been the one, with the kids. I am very thankful for the help I receive. I just want to be their mom again!!

I'm on meds now. Hydroxychloroquine. I also take Darvocet (which puts me right to sleep). They put me on higher doses of Ibuprofen, but I have severe asthma and high blood pressure, so I don't like to take it.

I've said it before, but Thank You for your support! I appreciate the help!
Posted 8/11/2007 3:09 AM (GMT 0)
Hi 3gifts,

Welcome to Healing Well :-)

I have a 13 year old myself and I can't imagine what you and others go through with this and such small children. I really admire you for that. It's sometimes hard to communicate all of this with children, I find it difficult even with my son. I agree with Pat, at such a young age just let them know when you aren't feeling well and once they get older you can really explain what is going on.

When did you start the Hydroxychloroquine? Its very common that this medication takes a while (3-6 months) to get the effect but it WILL make you feel better when it does. Its kind of hard being patient with it, but its very much worth it. I hope you can get better soon.

Take Care
Posted 8/11/2007 3:43 AM (GMT 0)
Hi again, 3gifts. Just wanted to pass along a little more info. If you go to the Lupus Foundation of America website at www.lupus.org (go through the "find local resources" link under the "Resources" tab to find your nearest chapter), there are actual local support groups around the country with people who actually struggle with lupus. I attend one in a large city near me. It is very helpful as well. We have meetings each month. You are able to make some really supportive friends there as well. That is also a great resource for doctors near you that you may need referral to with different things you may struggle with. Their website has lupus info. as well. Check out the Lupus Resource Center on this site, then check out the site I just posted about earlier this week that is a great source for lupus info. at www.uklupus.co.uk. Not trying to flood you with too much information, just want you to know where you can look if you need to! Take care. tongue
Posted 8/12/2007 3:26 PM (GMT 0)
Hi 3 gifts and welcome. Sorry I'm a little late in getting to your post - I just got back from vacation. I just wanted to let you know that I can so very much relate to what you posted and I also want to give you hope that things can get better. I have 2 young children (5 and 9) who were just 2 and 6 yrs old when I got sick. It was very hard on them and me when I first got sick despite having a very supportive husband. I found myself constantly telling my kids I was too tired to do things or too tired to take them places and I lived with tremendous guilt of feeling like I was always letting them down. I also found myself getting angry a lot more than I did prior to be sick and I think it was a combination of feeling so sick and tired and frustration that my kids were really too young to understand and that was all topped off with a huge amount of guilt by feeling like I was a rotten mom. I experienced anger more often than I ever had with my kids and it was not a good feeling at all. Now for the good news - things have gotten much better. I've learned some ways to explain my illness to my kids in ways they can understand and also as they get older they are able to better understand it. I have found ways to do quiet activities on bad days, such as coloring with them, reading with them or snuggling up and watching movies. I've also taken up scrapbooking which I love and my kids can also take part in that. I think it was Patty who said the most important thing is that your kids feel loved and I strongly believe that. I found that as my guilt lifted, so did my anger (it took a while though). The other good news is that over time, my rheumy found a combo of meds that has helped control my symptoms, although I still have flares. Since my symptoms are better controlled I can do more with my kids so that when a flare does put me in bed, I don't feel as guilty and my kids don't get as upset or frustrated because they know I'll feel better again. The others have given you some great resources to look at. One of the things I found on the lupus.org site is a book specifically for kids that you can read and do the activities with them. It's called "Are You Tired Again....I Understand" It's kind of like a workbook and activity book to help kids understand lupus and also helps them work through their feelings about it. I'm really glad you joined us and as I'm sure you can see, we are a very caring and supportive group of people. Take care of yourself and try not to be too hard on yourself about these things. I can tell from everything you wrote, how much you love your kids.
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