View Full Version : Hi.
03-13-2011, 07:31 PM
My name is matt, but I don't have lupus. My mom does though. I was able to deal with my mom being sick with lupus until mid last week when I found out that it attacked her pancreas. we are waiting to see how damaged her pancreas is from the inflammation. She was put on methotrexate I think it. It took away her immune system. shes been on that for a while now. I'm 21 and not sure I can deal with this.
03-13-2011, 08:00 PM
buckethead, how wonderful for you to be able to reach out for support for both you and your Mother. Here you can say whatever is on your mind and no one will judge you. Matt, your Mother is very lucky to have you as a son and I wish you both the best. I'm not familiar with how the pancreas works but others here are and will be along to help you learn and cope. Welcome!
Hi Matt and welcome to WHL! First let me say how wonderful it is that you are here! So many of our family members refuse to educate themselves or even attempt to deal with this difficult disease. I applaud you for having the guts to say the same thing many of us say at one point or another: " I am not sure I can deal with this".
This is a hard disease not only on the person ill but on the entire family. My daughter left yesterday for a week and I found out tonight that she called people to make sure they would check on me while she was gone. As parents we hate to think of our children having to go through this but they do.
I guess before I go on any more may I ask what is the hardest for you? What is bothering you now that didn't before?
03-14-2011, 04:31 AM
From what my mom told me, is if the pancreas fails, she would die, I guess that what I can't cope with. Her lupus scared me from the begining but she was getting better for a while.
03-14-2011, 06:36 AM
My prayers are with you and your mom and i am glad that she has you for support. Our family members do not often realize how bad this diease can be and the toll it takes on us. Whenever we get sick with anything the lupus usually takes over. Hang in there and be with your mom you sound like a loving caring son Love Bonita
This is a scary time and yes it is a needed body part but there is treatment. You are correct "if it fails" but just because she is having problems with it doesn't mean it will fail. They do have treatments that can keep it in check and, worse case scenraio, they may have to transplant. The good news is that just because there are issues don't mean you are at the worse case scenario. From what I have read they can treat this and much of it is the same as they treat a Lupus patient in a flare. Yes, there is the potential for something to happen but there is more of a chance that the treatments will work.
I know it isn't easy. What I am telling you to do is something that we fight to do everyday. The natural instinct when we find out that something new is being attacked is to look up all the information and then freak out. I have done it myself many times. Thankfully I have all of these wonderful people and a couple of other friends to make me stop looking at the "what ifs". "What if" only causes stress which causes even healthy people to get ill. Maybe you can help your mom to focusing on the fact she can die if it fails and instead focus on the different treatments available. In helping her you I bet you will get help too.
Please keep coming around. As I said before I am so impressed with the fact that you are here and trying to get answers to the questions and feelings you have about this terrible disease. You are a wonderful son!
03-14-2011, 09:48 AM
You can and you will deal with it and you will get tons of support from all of your new family here at WHL. Be strong come to us when you need us will be here.
03-14-2011, 02:26 PM
dear matt i am sorry you are having to deal with this but just remember we are here for friends and family of suffers of lupus just not people with lupus did she have pancreatitis and did they give her antibiotics i know how scary it canbe i have had it affect my pancreas we will all be here for you anytime and i am sending you and your mother cyber hugs from sydney australia kim l
03-16-2011, 07:53 PM
sorry it took me a bit to update. Monday we got test results and a lot is checking out. She didn't get anything about her pancreas, but no news is good news... Monday me and my mom just hung out and talked about how i didn't know how to deal with it. So that was good. I've been reading around, and there is a lot of info here. I'll give updates about my mom as things come up.
I agree... no news means they don't have bad news yet! I am glad you and your mother are able to discuss your feelings. That is a sign of a good relationship.
Keep us posted!
03-16-2011, 08:31 PM
wow, what a wonderful young man you are...i can tell that you and your mom love each other very much. I have 3 grown children, and they are all very scared too. They tell me that they don't feel like they know everything that they need to know about lupus. I explain to them, that no one knows everything. Lupus is a very individual disease, and it comes and goes, and changes attack locations all of the time. My daughter has a book for family members of lupus patients,s and she refers to this book whenever i mention something new to her. Also, whenever there is something going with me that worries them, i invite them to go with me to the dr., so that they can ask any questions and hopefully understand more. You are doing the exactly perfect thing....you are reading, talking with your mom, and learning everything that you can.
I have tried not telling my kids about everything that was happening, but then when i went into a really bad flare, they were absolutely scared to death. So, then i started sharing with them more about my daily conditions, and then they got really worried about whether or not i would be able to continue taking care of myself....so, i find myself often questioning exactly which is best....keep our pain to ourselves or share with our loved ones...they are going to worry no matter which choice we make.
I am also on methotrexate, and have been for a couple of years. I get a little anxious prior to each check up just waiting for bad news. We can't dwell of the bad possibilities, we have to keep stepping forward and looking for the good in each day. Enjoy your visits with your mom, and be kind to yourself....you are a very special son.