I'm New

I am new to this site and I am glad that I found somewhere to talk to people about this and feel open to be completely honest about everything. I will start by explaining or telling my story. I had been back from a vacation to Florida the summer after I graduated high school for about a month when I started to get really sick. The doctor thought it was this and that from gallbladder to gallbladder stones to stomach ulcers. I did test after test and took a week off work to get as many test done as possible. I went to the ER serveral times because my parents were begining to get worried because I was so sick. I lost close to 20 pounds in two months... and as a result my eyes were sunk in on top of having the dark cirlces under them. So when I went to another specialist he thought I could have lupus. He did a full blood screening test for that and other things that could be triggering such a reaction. Everything came back normal yet agian. I was beginning to think it was all in my head... and maybe everyone was right the whole time who kept telling me that. Then last winter my knees started to hurt really bad, and nobody really understood how much they hurt. I began to go up stairs and down very slowly due to the pain. They did test on my knees because they were swollen and red but once again everything showed to be normal. I was getting fusterated thinking back to all the test I had done before for the same result- nothing showed to be wrong. I went to physical therapy for about a month and a half and there wasn't any improvement and the things we were doing there I could do at home and not have to pay to do them. I stopped going and then I realized that the same time my knees began to hurt I had gotten really weak... hardly able to carry a basket of clothes without being winded. So I went to my docotor in late Feb early March and found out in March that I did have lupus. I have been doing pretty good with the medicine I am on- I take Plaquenil and I also have Tramadol for the pain. It's just hard to explain it to others especially my husband what exactly it is that I go through because I have this. Or why it gets worse in the winter time. He doesn't understand why I am not wanting to do anything much of coming home from work and doing a few things around the house and relaxing. They don't understand why it is some days I am fine and cleaning all day and doing odd and end jobs don't bother me but then there are days getting out of bed, going to work, and driving home take all the energy out of me.

Hey Jayme! Just wanted to welcome you to HW! Most of us understand what your going through and we are here when you need to talk, vent, cry, laugh, pretty much anything! This is a great online family and hope you stick around :)! Pat gave you a great link for the spoon theory. This has helped my family and friends almost understand what it is like to have a chronic illness such as lupus! Hope things start getting better for ya!

Jayme, if you find a successful way to make your husband understand...please, please let me know.

Ashley

Yes, he has been to all of my appointments. When we are there he asks many questions...like is there anything she can do to make things a little better and things like that. My doctor actually told him at one point to calm down he is only going to upset me. This is something I will have the rest of my life it isn't gonna go away. I don't know if he is in denial or what it is. He makes me so frustrated...one minute he is devastated but then when it comes to actually helping me more he acts...well i dunno. I will go do something I want and then when I get home I am dead...and his response is, well if you felt this bad you shouldn't have gone or you would have come home earlier. He has told me I use this illness to my advantage...When I don't want to do something I act crippled and when I do I am fine...He is only like his mother though...She had the nerve to call my mom and cry and tell her how devastated everyone is and has offered to come help me but has never come and actually told people she doesn't like to come to my house because it is cluttered and DIRTY....yes DIRTY...you would have to know her to understand the blow that was...her house is absolutely filthy...my 3 year old nephew told her that twice and demanded to go home...she has no job and is a lazy, rotten person. She offers to help me and then not only won't goes and makes fun of me...yes, I go to school full time, have 2 children, 2 dogs, and a husband to take care of...I am slack a little in the house cleaning department but I would not consider my house dirty in any way, shape, or form. I guess all of this is what has made this illness sooo frustrating.

My husband is gone away right now...he's been gone for 8 months, and will be back in another 4...he too has a long way to understanding how this disease affects me, and everything else involving lupus...it's going to be a bridge we cross when he comes back home. I'm reading these posts and others to glean info on how to help getting him more involved in my health issues too..I like the idea of him coming into my doc's appnt's...he never has before, but then again, I haven't invited him. I didn't realize the help that could be. Something to think about for the future. I know that I need my husband to be a partner with me in this. Right now he isn't either. I think it's not a lack of willingness, just something he hadn't considered. He too doesn't realize fully how sick I am...or how quickly this disease can turn on us/our bodies. I don't think he realizes the possiblities that one day all of a sudden I could have kidney troubles where I didn't before...etc...I have no intention of scaring him, but it's not healthy to live completely in the dark. For now I will read over others attempts to get their husbands/close support network more involved, or knowledgeable in the diease we have and how it truly effects us. It's very humbling to have been a very self-supportive and driven individual and then to have to admit that I'm not up to doing something like housework...that it just feels too much energy wise some days...but we all know what that's like, don't we? Ok, just wanted to add my two cents..that's all. Artickat just know that you're not alone in having a husband that doesn't fully get it...I think it'll be an over-time thing...people always have to adjust...heck, we're adjusting ourselves, aren't we? We're just forced to do it quicker, 'cause our bodies aren't letting us pretend we can't do things that we really would do if we weren't sick. I just hope that he continues for your sake to be interested enough in coming to your appointments, and that one day things will truly click for him. Take care.

Ellie

I would like to thank everyone!  I did find out about the spoon theory and have sent it to him by email and my parents and close family as well.  My mom read it and she said it did a great job explaining things!  Your knowledge and suggestions were great and well apperciated!  Thanks Again.  my husband has seemed to understand better after reading the spoon theory.  Yesterday after he read it he helped put supper away and has been asking what he can do to help a lot more.  I am hoping that it sank in and that he continues to help and offer a helping hand.  He doesn't understand the pain and why it comes so fast but I am trying my best to explain it to him when it does come and why like for the cold etc. 

I am glad that I found this for after I posted my lost one I felt a big relief lift off my shoulders.... it felt great to talk to people who understand or even read what others were going through and understand what they were saying. 

He has come to one meetings but the specialist I am currently seeing is kind of hard to understand and he is not use to people like that so I think he was a little timid to ask any questions.  I am going to a new one soon and I am hoping that if/when he goes again he will be more willing to ask questions.  It may also help to that the new specialist will be a male doctor.  We will see after the new year when I go and get the blood work done.