I'll never learn

Potsie,
      Being sick does not give him a license to treat you badly.  "Honey I am sorry you feel bad. This does not give you the ok to be nasty to me.  I am just trying to help.  It is ok to tell me to back off, but you need to do it in a manner that is respectful.  (i.e. "Mom I appreciate your caring, but please back off." and then you need to actually do it)  Especially if you want to be treated with respect."  Bear in mind that is very general advice and is suitable for people over the age of 10. 

      But there is a caveat that if things like this keep happening please speak with a therapist.  There is chronic illness therapy, and want to encourage you to think about it even if your son does not want to because it is a heavy load to be a caregiver.  Please also bear in mind that it might take you several different therapists to find one whom you feel comfortable with.  I am concerned about you. 

      I wanted to point you toward this thread in prostate cancer, because I want you to know you are not alone and it might help you to read it.

https://www.healingwell.com/community/default.aspx?f=35&m=1720907

Hugs,

Navy

P.S.  If I could take back all the nasty, unsupportive actions behaviors that my Mom put up with I would.

Potsie at some level we are all mad at the world for something, especially when we are teenagers! How old is he again? Was it 13 or 15? (I think?)

Ok that changes things a bit. Not about his behavior being unacceptable, but in that is a different developmental stage. What do you think about counseling?  I wonder about his mental status?  I would be angry at that age, but you having to wait on him hand and foot is very concerning to me.

Basically being bedridden makes me wonder if he needs to be in the hospital?  Is he recently post op?  Sorry I cannot remember. 

.

What do you do for doctors appt and etc? Is public transportation an option at least for you?

Potsie, I do not know your son but if he is like most guys at 23 years old he is probably hungering to have independance and live the life of a normal batchelor. This does not in any way justify or excuse his disrespectful snapping but it may give you a little insight where he is at. I am 30 years old now but I was about his age when I was first diagnosed. Before I got sick I was an extremely active outdoorsman, athlete, and college student. It was not odd for me to be out doing something active everyday and competing with my friends on some sort of ballfield good or bad weather. Even though I was married, I still was trying to finish my schooling and find my place in this world. Then I got sick and the whole world seemed to crash around me. My incredible wife is a couple of years younger than me but she was a caregive and continues to be my caregiver through all of the operations and hospitalizations. I used to try and keep up with my friends even after I got sick and it really started to get me down when they would be playing basketball or going hunting and I could not keep up. The steroids and medications caused me much embarassment and I did not even recognize the guy in the mirror but my wife still loved me the same.
Just like your son, there were times that I have lacked confidence or was embarassed and snapped at my wife. The best thing that she ever did for me wast to tell me that she deserved the same respect that she was showing me and I needed her. When she told me I did the typical guy thing and acted like what she was saying was not true, but deep down I knew she was right. I had not recognized the way I was talking to her sometimes( not abusive just being grumpy)and now I notice it. She does give me a little more patience when I am on prednisone but she keeps me in line. Just because a person is sick does not give them the liberty of treating others poorly. Call him out on it when he does snap at you and let him know that he is 23 and could be doing this on his own. When he understands that your love and help is a blessing, he will not only treat you better but also his future spouse and other people. I am sure that he is a great kid but even great kids go through phases too.

Tell him he is not to old to take over your knee and give him a spanking!!
lol! just kidding.
You don't deserve to be treated like that and he needs to know that Plain and simple!

You guys have been so helpful! I really appreciate it. Wolfie, you crack me up!

I had a restless night, so I'm a little tired this morning. We have an appt today, and we'll be waiting for hours in the waiting room. We go to Parkland hospital in Dallas. It's a public hospital and a great one. It's also the hospital that they took John Kennedy and Bob Kennedy to back in the 60s. My son gets help from the Parkland Assistance program. They pay for everything, except small co-pays. He was in the hospital last year for a month, and the bill was $159,000, and we didn't pay a penny.

Once again, you guys are awesome! Thanks for making me feel better! I'll try to be a little less sensitive.

Navy, he has already been moved from every 8 weeks to every 6 weeks. The reason I wait on him hand and foot is because he has 0 energy, especially the week before Remicade. I really don't have a chance to talk to his doctor because he's there with me and I really don't want to make waves.

I think it's too soon to go to 4 weeks. They just moved him, so I don't think they'll move him again so soon. The gastro doctor will see him at his worst today, so I'm hoping she'll come up with something. I'll look into this Lupus too. I am going to ask the doctor about Vitamin D though. My son is usually not like this when he's feeling good. I know it's just because he feels rotten. I appreciate your advice.

Mary

I think those would help my son.

I also hate to admit this but when I am sick and flaring I just WISH my parents/people would leave me alone!!  My mother has learned this, she knows if I need/want something I will let her know. When I'm flaring I'm angry at the world, I don't mean to take it out on anyone, but when people come around they are the easy target. I prefer to be alone when I am sick (maybe thats unhealthy emotionally?) but it works just fine for me. I don't like for people to see me sick, or give me sympathy.  I'm just the same as everyone else only my butt is broke, right? I'm the same age as your son, we might think alike.

My only suggestion is to make it very clear  that you are there and ready to help if he needs or wants it then leave it alone. I can honestly say that all of the times my mother "nagged" (thats what we call it in my house) it just pushed me away from her and not want to tell her what was going on and how I was feeling especially when I was sick.  It came down to every time she would ask me how I felt my default answers were "fine" or "ok", regardless of how I felt because I wanted to avoid a conversation.  I'm sure when I'm a mother I'm going to want to know every little detail about my child and how they are feeling (especially when they are sick) I just know from experience that it can push children away. Don't take it personally.

Of course I would want to help her and know how she is feeling, but if she told me that she would let me know when/if she needed something, then I would respect that. I would make it clear that I am there to help when she wants it.