I haven't been on her in a while, been busy and went to facebook, which I was able to find alot of my friends from here there. I was posting today for a reason a very big reason. I can not post anything on facebook that is about my illness, for the fact that my mother is on facebook and is in stage 4 kidney failure. Sure she knows some things but she does not know the big picture. This week I finally got dignosed with sle lupus. the doctor told me on monday. It wasn't that I thought that they would not say that after all I have been through, but just hearing it was rough. I was so mad when the doctor told me, my husband had to work and could not go to the dr with me. I ran out mof the dr office and called him and he left work. He was so upset that he was not there when they told me, but since he is the only one that can work he has been working like crazy cause we have no medical insurance any more and have to pay for all my medical. Which is a big B*tch. I don't understand why I am so mad about all this, last night I got into an argument with my best friend over something dumb. just because I am mad about the hole thing. I feel like I could go beat up someone and when I get through would feel better. I guess everyone deals with it differently.
Anyway on to why I am posting on here.
My parents are both living and are almost 70 years old, my mother has been sick half of my adult life, most just thought that she was crazy, but some was actuaally serious. I have not told my parents that I have been really sick, they know some but not all, I did how ever tell my two grown children that are ages 22 and 21. I felt that they needed to know in case they had some kind of medical issues, which my daughter has had. anyway my mom was dignosed with kidney cancer in 2007 they were able to remove the tumor but she still has kidney disease. In the last few weeks she has been in and out of the hospital and has had severe problems, but now knowing that I actually have lupus and I am the first in the family to get a dignoses, it all makes since to me. It's like the puzzle finally came together, my husband even said that all the years that he has known my mom he thought she had a mental problem but now he sees that she probley had lupus all along. I have been faced all week with weather or not to tell her, I did decide to tell my dad and see what he says, but now that I think about it, my mom could actually be helped with knowing this. I amy change the way she is being treated in the hospital and hep her for a change and maybe people will not think that she is crazy any more.
I have planned a trip tomorrow to go and visit my parents they live about 45 miles away from me, my husband and one of my children are going to be there when I tell them this, I don't know how they will react, they have been hurt so much in life, because in 1998 I had to tell them that there 6 year old grandson passed away. so telling them bad news does not set with me, but at least my husband who is very wonderful will be there to help me.
so what I am asking or looking for tonight is who do you tell your family, and how did they react to this?
Is it wrong to keep things from your parents or other relatives?
do all your friends know you have lupus, only 3 of my friends really know what I am going through, I haven't even let my husband tell his best friend about the seriousnos of my condition and now I am feeling that it is wrong because he may need someone to talk to other than me about this. But I feel that people look at you differently when you tell them, for one they may not understand what truely is going on. I know some of my friends question why I am not out on the weekends the last few weeks, and keep questioning what is going on, but the dr has put me on some rough meds and due to the heat and sun here in south carolina my husband and the dr want let me out much. so what to do?
does anyone have any suggestions that may help me. I am very upset and mad over what has been delt to me this week but I am feeling better about it as the weeekend goes on.
Sorry so long and thanks for reading and posting.
Hope everyone is taking it easy in the very hot weather we keep having.
Hi Leanne, I was so sick before diagnosed, it was a blessing to put a name to it. My dad cried when I re him and my kids were glad to know it could be treated. As the weeks/ months went by they saw me get better and better.
I didn't act upset and so they were okay. I wish you the best. Just remember, you had this for awhile, they just named it and now it can be treated. This is good.
Ahhh yes..the diagnosis. Such a blessing and a curse at the same time....
I can only tell you what I would do in your shoes - and that is...tell them. Gently. You don't have to make it sound big and scary, or maybe as bad as it really is, but tell them that you have an autoimmune disease (explain what that is), called Lupus (explain what that is), and that there is no cure, but it's not really life threatening, and with some time and Dr. Help, you could get it under control, and learn to live with it.
Personally, I can't stand it when people dont tell their parents or grandparents what's really going on, just because they're old. Old people are tougher than you think, and i just think that if I got to be that old, I would hate it if people kept me out of the loop. So I would definitely tell your parents. Maybe one at a time, or together, depending on how you think things will go. If you're more concerned about your mother freaking out, then I would talk to your father first, to give him a basic understanding of it, and then talk to your mother while he is there, so he can help to calm her down and explain things to her, while he's not in as much shock himself.
When I first got sick, I kept it under raps as well. My boyfriend knew (because he saw me being sick every day), and I eventually told my mom after about 3 weeks of feeling like...um..butt, but I didn't tell anyone else. Flash forward to like 6 months later when I was diagnosed, (well, not really. Just told that I had an autoimmune disease), and I didn't know who to tell or how to tell them.
My boyfriend was there with me when I was given the news, and he didn't really say anything. I told my mother, and she was just happy that I found a doctor who believed me and wanted to help me (I'd gone through 4 docs).
I told my brother, and he... well, i'm still not sure how he's taking it. I don't think he can, really. He just went completely..silent. He'll ask me how i'm doing, and when i reply back about a lot of stuff, he'll go silent, and then kind of skip over my sickness. Sometimes he will say "that really sucks", though. It's all up to the person. Sometimes people just...don't want to know. But I personally think that it's important for people to know, at least about the fact that you have a disease, and what Lupus is, as well as what autoimmune is. If not for you, so that they have more understanding of you and can give more leeway, but at least for everyone else who is living with this disease that nobody has any idea about.
It's understandable to be angry and upset that you've been dealt this hand. Heck, if someone wasn't i'd be suspicious.
Just, try to take it one day at a time, and you'll get through it. Don't worry about not letting your hubby talk to anyone - it was what you needed at the time. Just maybe let him do it now (: I know I was really worried about what my boyfriend was telling everyone, and what they knew...it made me feel really self conscious at times. But you just have to let go at some point.
Best of luck to you - feel free to scream and let it out. If you get really angry and want to throw something - try taking a bucket of ice and throwing it into your tub. Not the bucket, but the ice, a handful at a time or so. It's cold, but it helps to get the frustration out, and to watch something shatter.
It's good to see you here again.
I'm one of those people who is brutally honest, so I just told everyone about my AI issues - family, friends, co-workers, everyone. If they were curious, I would educate them.
You will have to figure out for yourself how to tell your Mom - you know how fragile she is.
Like you, my diagnosis made the symptoms that I had seen in my mother and aunt make sense. LOL- my hubby considered my mother really crazy, and I agreed with him. Now that I'm going through the same pain, I can realize why she was so psychotic - she was in horrible pain and no one would help her. It explains a lot, but it's still hard to forgive her for taking it out on me. She passed away long before I was dx'd, so I didn't have to deal with your decision.
Good luck to you.
This is such a hard thing to answer because everyone is different. My family isn't very close so it wasn't a big deal. My brothers found out through other family members I believe. I only told people close to me at first. I didn't hide it I just didn't feel the need to "air my dirty laundry" as the saying goes.
As far as the being angry thing.. That is completely normal. We often discuss that having an illness like this often is like losing our old selves. During that process many of us actually go through the different phases of loss just like we would do if someone died. I went through it. It is just part of getting to a place where we can accept the new way we live our lives.
It sounds like you and your parents are close. If that is the case then I believe you have to tell them. The good news is that now you can be treated. Lupus is usually not fatal as long as people take their meds and do what the doctor said. I think if you tell your mother that part she will actually be relieved. I understand wanting to keep things from your mother as a way to shield her but I think it would hurt her worse not knowing. You know when we are mothers we want to be able to help our children even if it is only by worrying :)
You know your family better then anyone You will do what is right for them and for yourself. You are lucky to have so many people that care. They will help you when times get tough. I am going to give you a link to "The Spoon Theory". It may help some of the people you tell understand a bit better
The Spoon Theory
To be honest - that's almost exactly what it was like for me. It did feel like someone died... me. The person I could have been. The one who woke up in the morning and didn't feel pain, or have to worry about counting "spoons". The one who could be independent, self sufficient. Who had a job she was good at, that she was proud of. The one who had...not to sound corny, but endless possibilities, lying in front of her. The one who was going to be happy and carefree. Who never thought about having kids until the time came, instead of coming to the sudden realization that she wouldn't even be able enough to pick up her child. Who wouldn't have enough energy to be the best parent she could. Whose child might end up spending their life sick, and in pain, like she was. The one who was only unhealthy when she scarfed junk food.
Originally Posted by tgal
Sigh...anyways. That was unrelated, Im just being weird and up at 2am for no reason. Don't mind me (:
Well after long consideration and thinking, the day was planned to spend it with my family, I was a wreck, but I knew it had to be done. We decided to tell my dad away from my mom, but how to get the apart from each other. We told my dad my car was acting funny and if could ride down the road with myself and my husband. We drove about mile down the road, my husband driving of course,we found a nice place to pull over, it's out in the country and my dad he was so strange acting I knew he could tell something was up. I had all the information printed up so he could read it and make since of it that way.Even down to how the dr said it me.
We decided to hold off till I go back to the dr and then we are going to tell my mom about everything. My husband was so great talking to my dad, it was like something I had never seen before. I felt bad sitting there telling him this, he has dealt with so much since I have been grown, I am his only daughter and I have his only grandchildren. My dad has always been there for me and my children so much so that he helped us buy our first home, which now we may have to move out of after only 7 years here because of unemployment and medical expenses. Well at least now he knows why we are losing our home. Anyway he understood everything more clearly and ask if this kids new and I explained that they were told right after I had told my husband. Even though my husband knew what was going to be told.
We went back to my parents house, my mom ?? what was going on but we played it off and had a wonderful time, it was the first time my husband said he enjoyed the time there with them. My mom's sister who had a liver transplant about 6 years ago came out and visited as well.
Now we just wait to tell my mom. We have decided not to tell my mother in law at this time because we are not close with her and she always causes a problem and thinks that I shouldn't be married to her son. I do how ever think that my husband did tell his friend but I don't think he told him everything at this point. If my husband used a computer I would suggest that he come here, but he stays off line.
Thanks everyone for the information it was great and helped a lot.
Congratulations for telling your dad. I hope that you feel really good about that decision.
I am younger than you, a mother not a grandmother but when I got my diagnosis, I immediately thought of my dad. He has spent much of his life ill and the doctors thought he was clinically depressed (which he may well of been) and that many of the other symptoms were psycho somatic ...or in his head. he had to retire (read stop working) very young and my mom became the main breadwinner. Truth is, like you said, as I heard the diagnosis so much clicked in my head and made sense. That being said, I knew I was on the road to a lupus diagnosis for months before I told him. Eventually I told my mom and it was as the pieces of the puzzle started to fit for her than she insisted I tell my dad. My doctor actually suggested that he and perhaps my brother talk to their GPs about some testing as they also have some symptoms similar to mine. I am not sure if that has or will go anywhere but for me, even if it gives him the justification in his head that likely he has some sort of auto-immune issues and the he isn't going crazy. I am glad to share that part of it. I hate that he worries about me but really, he did that anyway...I will get used to my diagnosis and so will he eventually. I respect your decision to wait with your mom. Only you and your family will know what is right with that. Take care.
Good for you. It sounds like this just might bring you, your husband and your parents closer than ever. It's good when these things work out.
Your husband sounds supportive, like mine. We're so very lucky to have them.
Good luck with talking to your mom.
it is in times of trouble......
you find your real friends.
and which family is friendly.
it sounds like you have a good husband, i am happy for you.
enjoy him !!!!