I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: meadowlandsnj on April 29, 2007, 01:56:24 PM

Title: I don't know how to take this
Post by: meadowlandsnj on April 29, 2007, 01:56:24 PM
I was planning on going to my neices wedding on Menorial Day weekend in WV, I live in NJ.  I've been looking forward to it, talking about it, where we're staying, ect.  I had a talk with my mom today because we were going to all go down together, my cousin driving us.  My parents are older but "young" older if you know what I mean.  Anyway, What I got from my mother was that her and my sister were talking and they really don't wajt us coming to the wedding because of me being on dialysis and them being afraid something will happen.  I already kind of set it up with the social worker.  My mother told me it was my neices big day and they don't want anything to go wrong like me feeling not good or something.  I am so hurt by this I can't even begin to tell you all.  I don't have really any other problems like heart problems or anything else.  I can tolerate dialysis pretty well, I've been doing it for two years now.  I feel pretty good after it.  I am just so so hurt and sad to think I'm not wanted.  And they talked all this behind my back.  Me and my sister are pretty close and she let me talk about going down there and everything knowing full well they didn't want me.  I can't even talk to her now, I feel like a fool for being so excited and finally having something I was looking forward to. 
Am I taking this the wrong way?  Are they really concerned about my health or is it all they don't want me messing up her wedding?  I mean except for dialysis and well controlled some high blood sugars which I do take care of there's nothing else. 
I really feel so stupid, I don't know what to think.
I hate dialysis.

donna
Title: Re: I don't know how to take this
Post by: KICKSTART on April 29, 2007, 02:04:16 PM
I just think some people 'act' without thinking and its usually the ones that are closest to you!. I would explain, like you have here ,that the risk is very small. I would also impress upon them how much you were looking forward to going (gawd knows we need something to look forward too!) Tell them you have set everything up and have the backup if needed and there is very little chance of something going wrong,after all it should be you who decides if you want to go ..and how you feel ..good luck and dont be put off , get your point across and dont eat all the wedding cake!
Title: Re: I don't know how to take this
Post by: paris on April 29, 2007, 02:15:48 PM
I am so sick of people "worrying" about me and thinking they know what is best!!  Just let me live!! You are not going to "ruin" your neices day -- she will probably be so touched that you came and will always remember that you loved her enough to make the trip.  You need to go and kick up your heels!  A change of scenery does everyone good.  Wish I lived in WV -- you could stay with me!     Go - have a great time and post pictures!
Title: Re: I don't know how to take this
Post by: Sara on April 29, 2007, 02:21:44 PM
What do they expect to happen if you don't feel well?  Do they think you're going to throw a fit in the church aisle?  Do they think you're going to go facedown in the wedding cake?  I'm sorry, but they are complete jerks for doing that to you.  I would seriously tell them to shove it and tell them how hurt you are that they would say something like that.  This is your NIECE'S day, not theirs.  You are going to support your niece and see your family.  You go, have a good time, and hopefully they will get over themselves at some point.

That is so crappy, I am so mad for you!!!!   >:( >:( >:(
Title: Re: I don't know how to take this
Post by: okarol on April 29, 2007, 02:29:01 PM
Yes, you should go and no, I don't think they meant any harm. Families say stupid things. You're a grown up, capable of taking care of yourself, and even if there is the chance you may not feel well, that's too bad. Did they actually say you are not welcome to ride there with them? Try not to let it hurt you, make your plans and go have a good time. Just tell them "Thank you for your concern, but I will be fine." I would let your sister and mom know that you are sticking with the original plan and smile when you say it!!
Title: Re: I don't know how to take this
Post by: Ohio Buckeye on April 29, 2007, 02:45:55 PM
That is sad, so sad.
Someone should not be exclused from something because they are ill.
They should think how they'd feel in that circumstance.
I'd go. Your niece wants you there.
They may have well intentions and worried about you and feel so inaequate
if they had an emergency, 'but their thinking is wrong, wrong, wrong.
You should be able to make your decisions not them.
I'd try to talk to them.
I surely hope and pray you get to go.
Title: Re: I don't know how to take this
Post by: Sluff on April 29, 2007, 03:46:53 PM
meadowlandnj, Go anyway. To hell with what they say or think. Make sure they know you were there. Fall off your chair or something.

 :grouphug;
Title: Re: I don't know how to take this
Post by: goofynina on April 29, 2007, 03:55:16 PM
I think you should have a heart to heart talk with the bride herself.  Let her know how excited you were until you heard what they were saying and assure her if you felt ill in any way, you would just go back to the hotel room to rest.  That is so messed up for them to have said that but not surprising, families seem to say the stupidest things when they dont know the circumstances.  Girl, you get yourself ready to take that trip, you have yourself a good time, and you show them that you are going to LIVE UNTIL YOU DIE BABY!!!   :2thumbsup;

p.s.  they are all just worried that you are going to be prettier than the bride i bet ;) :) 
Title: Re: I don't know how to take this
Post by: George Jung on April 29, 2007, 06:14:58 PM
That is ....I can't even think of a word to describe it!!!  I would go (by myself if necessary) and not say a word to those involved.  I would dress to kill, put on my best happy face and have the best time I could right in front of them.  I would make them feel soooo guilty for what they have said they would regret it for the rest of their lives.  I am not like that about most situations, usually I would say forget it and not talk to the person again (which is sort of what I am suggesting to do) but screw it, in that situation I would spend all the energy it took to have them feel guilt.  Get your hair done, your nails, whatever you like to do that makes you feel good and go like you planned.  Have a great time, I am sure there will be other people there that would miss you if you don't show.
Title: Re: I don't know how to take this
Post by: del on April 29, 2007, 07:20:33 PM
GO!!!!  Even being on dialysis you have a life.  Go yourself if you have to and enjoy yourself.   :grouphug;
Title: Re: I don't know how to take this
Post by: Rerun on April 29, 2007, 07:41:21 PM
GO!!!!  Even being on dialysis you have a life.  Go yourself if you have to and enjoy yourself.   :grouphug;

Yeah!   :thumbup;
Title: Re: I don't know how to take this
Post by: RichardMEL on April 29, 2007, 10:11:25 PM
I think it's a great idea to speak to your neice... after all it's her big day not your mom's or her sisters or whatever. sheesh.

It's like they were trying to do the best thing for everyone but they left out a major thing - talking with YOU about it - like you're deaf, dumb and blind or something.. and that's the most hurtful thing for me. It's fine to say they are worried (though you would think after seeing you on dialysis after 2 years that clearly you can deal with most things pretty well).... but to make a decision without consulting you is just rude and makes me mad.

I also agree with the person that said your neice would be touched that you made the effort, organised with a social worker for dialysis etc to come... that shows how much you love her and care to be there rather than taking the "easy" option and not going. As it stands your mom & co have tried to deny you that option and that sucks.

If it was me I'd say to mom "Well thanks so much for asking my opinion or caring about how I feel about any of this. I have organised with the social worker to handle things so I can go... and I *can* go.. do you think *I* would go if I thought there might be a problem either for me or for anyone else at the wedding? I don't have a communicable disease and it is under control.. I fail to see why you think i can't go when the medical folks have OK'd.. so you let ME go and let ME worry about my situation OK?"

Good luck
Title: Re: I don't know how to take this
Post by: carson on April 30, 2007, 05:27:37 AM
I think all you need to do is make a plan. What IF something happens? What will you do? If you're ready for it it probably won't happen. It's when you don't plan that something always does.

I agree, talk with your niece. She'll be so happy that you want to come.

You're on dialysis so you CAN live your life. You're not contagious. You're not dying. Go! Have a good time. You'll be sorry if you don't!!
 :2thumbsup;
Title: Re: I don't know how to take this
Post by: stauffenberg on April 30, 2007, 12:12:18 PM
I think the problem in your family, when it is considered in its deepest psychological motivation, is not stupidity about the significance of dialysis for sociali funcitons but instead, just pure malevolence. By this exclusion, colluded behind your back, they are trying to label you as a freak, as the scourge of the herd, to be ostracized from the normal family.  If their motives had been honest they would have consulted with you instead of whispering behind your back.  There is a powerful instinct in the human race, due perhaps to the conditioning of biological evolution inducing us to shun the sick who might infect us with their illnesses, to punish and exclude sick people of all sorts.  If you survey all the thousands of irrational regulations in society to control and punish the sick, and consider the meanness of the way most healthy people treat the sick, you will see that what your family has done to you is just one detail in this universal psychopathology.
Title: Re: I don't know how to take this
Post by: meadowlandsnj on April 30, 2007, 03:23:23 PM
I think the problem in your family, when it is considered in its deepest psychological motivation, is not stupidity about the significance of dialysis for sociali funcitons but instead, just pure malevolence. By this exclusion, colluded behind your back, they are trying to label you as a freak, as the scourge of the herd, to be ostracized from the normal family. 


Thanks.  That makes me feel soooo much better.   

Anyway....

But today I had a talk with my parents about it and it seems they really didn't feel up to sitting in a car for 8 hours, stay the one day then go back the next day.  My mom has breathing issues and my dad has a few health issues himself.  So by being honest with me and telling me their side of it I can see why they decided against going for themselves.  I just wish we had all talked about it honestly and openly from the beginning.  And they refuse to fly but that's still an option for me.  I never flew before but I want to so that's another possibility to getting there which I realize today was the concern, the long drive there and back.  I would have had to have dialysis from 6am to 10am in Hackensack then been in a car for 8 hours. 
Thanks everyone for you comments and caring, it made me feel a lot better knowing I can turn to all you guys when I feel my lowest and have you make me feel better.   :grouphug;

Donna
Title: Re: I don't know how to take this
Post by: nextnoel on May 02, 2007, 12:04:51 PM
All I can say is, WOW!  I'm glad things are better about this situation now, but why on earth didn't your parents just admit their own reluctance from the beginning!   

I think you should go if you want to; after all, life is all about celebrating major milestones, and marriage of a relative is certainly that!  I hope you go, and enjoy it, and all is well.  You go, girl! :2thumbsup;
Title: Re: I don't know how to take this
Post by: anja on May 02, 2007, 11:00:07 PM
I am glad you got the whole thing sorted out with your parents, Donna, so you don't have to take it personally.

 I hope you are able to join in the joyous occasion even though it is so very far away!