Hi Julia, Yes there have been some very painful moments in my life with people who "love me". It wasn't until last year that the doctors started talking lupus but it was about 8 years ago when I started having problems. My was was disabled and I did everything. Than I got sick one day and slept in the guest bedroom. My husband flipped out. we had a motor home and he came in the bedroom and said let's load up and go. I ouldn't even get out of bed let alone pack up the motor home! So he grabed a few things took off in the motor home alone. He would come back everyday for a few minutes just to see me still in bed. Always the same thing. Telling me I wasn't that sick and if I didn't go with him he'd get somone that would. After the third day he finally took me to the doctor. They sent me straight from there to the hospital. I spent the next 10 days with tubes everywhere. He came into my room in the hospital and said wow I thought you were just being lazy! This from a person that saw me wait on him hand and foot and do everything???? Frankly I think he was afraid I wouldn't be able to take care of him anymore and the thought horrified him. Of course I got better. He died a couple of years later. Than another time I went to my parents house because whenever I got to sick to cook for myself or take care of myself they helped me out. My sister flew in from florida to visit my folks once when I was there. She said she would only stay in the house as long asshe could put up with my being sick! If she couldn't handle it she would go stay in a motel. She barely even saw me. I spent most of my time in bed and I never cried to anyone about how I felt. I mean when you get so sick all you want to do it be alone and sleep and run into people when you eat drink or go to the bathroom. Than I have a brother who is a minister. He said I really needed to lay off the pain killers. So I didn't get my script renewed. within 3 weeks he had to drive me to the ER because I couldn't take the pain anymore. He never said anything again. So yes it seems like an on going battle. So I come here to talk to people about how I'm feeling. I try very hard to keep the rest of it to myself. Ihope you can get some support here. The people that are giving you trouble are the ones that have to deal with their own issues.
Julia, I am going to say something that may sound harsh but you need to understand that I am dealing with similar stuff from my whole family except my grandmother, daughters (who are too young), and husband. I would ask your sister if she would like to discuss her concerns over the number of medications you take with your doctors on your next few visits. Tell her you would appreciate having her there since it would help your doctors understand the situation. Make sure your doctors tell her why each medication is given and what is wrong and exactly how bad it could get without the meds and also how you could die untreated. Also have them tell her your condition and how things are going to be. If she refuses to go tell her that she forfits the right to comment on your medications by not going to see your doctors with you. Tell your doctors that you give them permission to explain your condition and how it could go without treatment, with treatment, and basically what to expect to your sisters and daughter and husband too. This way you can tell them to call and consult your doctors if they get on your nerves too baddly.
For the other sister if she does not wish to be around for you then you need to make it clear that it is a two way street and you will not be the one to do all the stuff. You need to step away from doing things when she needs help and make her deal with stuff herself since she clearly will not help you.
Your daughter needs to have a stern talking to by your husband and also your doctors. Then if her attitude prevails she needs to pay rent or move out. Simply put she is living with you for free causing you stress and added burden, not contributing, unwilling to help by taking you to the doctor every few months, and has a bad attitude. She may be your daughter and you can still love her dearly but such an attitude is dangerous to your health. She is being a selfish, spoiled, obnoxious brat. She is old enough to know better. Maybe it is time to have it spelled out for her that you could die. Also maybe it needs to be spelled out that quiting is not something your husband can do. So she needs to change her attitude real fast or face the loss of her free ride. She is working which means she has income. Therefore she should be taking care of herself not living at home for free and treating her mother like garbage. It is totally unacceptable. If she gets mad send her here and have her talk to me. I am more than willing to give her a stern 'talking' to.
Your husband really needs to be made aware of how your family is treating you, especially your daughter. If he already knows and is doing nothing then he needs his butt kicked. I will loan you the frozen boot my great-grandpa used to kick sense into those who were being idiots in our family when he was alive if you want it. Your whole family really needs a good education about your diseases. If they think your illnesses are not real then they need a good talking to by your doctors who will likely be more than happy to set them straight if it means keeping you on your medications and reducing your stress levels.
Please understand I am not trying to offend or be mean, I just think you need to get this under control if these people are going to be part of your life immediately because otherwise your health will suffer constantly. When my family refused to listen or learn I walked away and limit contact to 2-3 times a year. Good luck. Stand up for yourself now before it is too late because if you don't they will abuse you until you are so ill you cannot continue. And what your sisters and daughter are doing IS A FORM OF ABUSE. Please do not allow them to get away with it, seek help if you need to but find a way to either give them a wake up call or cut off contact. Stop doing things for your sisters because they do not deserve it and are taking advantage. Besides which your health cannot handle it. Simply put, make them handle their own problems. They don't want to be there for you then they can be there for themselves- alone. It may be mean, it may be hard, but it is also self preservation. Family can be more harmful than friends in many cases. I hope you find a way to get through to them. Perhaps a gift of a book about your disease, or even something from your doctors explaining your conditions and medications. Sometimes information works. Othertimes cutting them off for being jerks wakes them up. Heck you never know maybe your husband would give them all a good talking to and shame them into behaving like family should and also make it clear just how serious your conditions are.
Tx: plaquenil, Imuran, Enbrel, Celebrex, Tramadol, Norco, Singulair, Skelaxin, Evoxac, Clonazepam, Zonisamide, Baby Asprin, Relpax, Copper IUD
I can't begin to express how much all your postings helped and opened my eyes to different coping skills. I want to thank you all so very much. So many of you are in such difficult painful situations, thank you for sharing such personal stories, they really have made a difference. I realize I have to be strong not only for others but for myself, to be blunt, I have to get a back bone. Thank you all again and God bless everyone.
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Post Edited (Julia20) : 7/11/2007 7:26:07 AM (GMT-6)