Hi Guys,
A bit of history first. Hope its not to long. My nephew is 26 yrs old and started having severe pain in his pelvic area in March. My sister was 16 when she had him and I had just given birth to twins 6 mo. earlier. She just wasn't ready to have a baby. My husband and I tried to help her and really became his parents. She would not give up her teenage life and somebody had to help this baby. We had Ray all the time. We have 3 daughters and he is to us our son. My sister is 43 and is still very imature. Been married 3 times, just left her 3rd husband a week ago and already is with someone else. Happens to be Rays father who left after Ray was born. Ray felt the need to know his father and went on the computer and found him. He has already moved in.
We are very close to Ray. He owns a house with his mother and has had to do and pay for everything. My husband and I live with them because we are both disabled. We our about to lose our home due to our 2 yr fight with Social Security. Ray needed help because my sister didn't pay the mortgage for 6 mo. He gave her the money, but God only knows what she did with it. Its two late to save our home, we hopefully have a buyer this week. Moving in with them gave us a place to live and we pay rent.and help with food.
My sister is one of those people that thinks that those of us that have chronic pain should just get over it and go to work. She thinks we like staying home. He has been to alot of doctors, had alot of test and still no answers. He just started going to the pain clinic. In Boston the doc said that he has Cronic Pelvic Pain Syndrome. They told him to stay out of work, he is on strong pain meds. My sister works at coffee shop and we all make sure everything is done before she gets home. She just comes home and sits on the couch. But this is not good enough for her. The coments about "us people that should just stop our meds and get on with it" are daily. He is having a hard time dealing with all of this. He still gets a check form work but he would rather be there. I have heard all of this stuff from the "normal" people for years. I can't say that I'am used to it but I can put up with it. She made a comment to me today that I souldn't say I'am tired. "If it didn't take me 3 hrs to do things, I wouldn't have to get up so early" Ray got so upset.
I told him not to worrybout what she says. I can deal with it. But she is always saying things like that to him also. How do I help him? I tried to have him get on here. he nows how how much you all help me. She will never change. I think she is jealous that we get to stay home. I would trade with her in a minute, so would he. What can I do for him?

My thought, You hold her down, and I'll beat her up. I wish I knew what to tell you. some people you just can't help and your sister sounds like one. Just wanted to tell you to hang in there,
Mary

Sounds like you sister still resents her son and anyone who helps him.
Bless you for caring so,he's lucky to have you and your family. I hope
he posts and gets some people to talk to. And i hope he get's better
but sounds like you sister would wear me out. Good luck,stay strong
for each other. Sue PNer

boy sue, there is the narcicist [i know i spelled that wrong] in every family and your sister is yours. i feel so badly that you have to live with her. no one needs to be abused with those words every day. i know you say you can handle it, but you should not have to. i know what you mean about feeling badly for her son. he, of course, expects her to love him and feel for him and she is just not capable. i think you have done your work through the years with him, and that is the best you can do. just reinforce that she is not capable of empathy for some sad reasons. maybe his doctor can get him into therapy and he can talk to someone else? an outside opinion could be priceless. he will learn with age but it is a hurtful lesson for sure. my prayers for you all. joan

Hey Sue

It sounds a hard and horrible situation to be in.

I agree with Mary - I will help hold her down and then you can beat her up, give her a small taste of pain and see what happens!!! (suddenly I'm sure she will feel like a aport of what you feel like and might be more empathetic). It's a long term fight I have with my sis - I'd actually be tempted to shove her outside, let her get the worse sunburn ever (the one that's so severe your skin blisters and you can't bear anything touching you) and then tell her to go work (it's the only way I have come up with to describe alloydinia).

Sending loads of love your way, it sounds a tough situation - wish I could help more!!

Love ya

Froggsy xxxxxx

It's too bad you can't find a place for the 3 of you to live and just let your sister fend for herself. I do know though since he's Ray's Mom that won't happen. He couldn't do that.

As far as the CPPS, I have it and I complain about it here.

I just wanted to tell you that there are a lot of Drs. out there now that are dealing with CPPS. I have a Urologist that has helped me with it, I had a Gyno that specialized in it but he's moved to Ca. now and I just loved him. I have been to Pelvic Pain Drs. University Hospitals have Pelvic Pain Drs. in them.

There are also Physical Therapist that help with CPPS. I also have RSD, Lavator Ani Syndrome, Interstital Cystitis and several other things going on in the pelvic area that they have diagnosed.

I have never gotten mine calmed down like I need but it is doing better. The Urologist seem to be trying to do more for it then anyone. Mine have done treatments where they put meds inside my bladder and all of the other areas. The ones my Gyno did helped me but the ones the Urologist did made me worse. I believe they used different meds and since my Gyno left I couldn't get his list of meds he used.

My PCP gives me triggerpoint injections. In the pelvic and hip area and now I am also getting them inside to help calm the pain down. My goal was to get off of the Methadone full time but it's most likely not going to happen.

I love the Methadone because of there aren't too many side effects but I am on a very low dosage but it does the job to a point. If I go off of it, I can't walk because of the pain. It starts running down my legs and to my feet if I go off of the Methadone and then I can't walk for the pain.

I'm just trying to give you some info that might help him to get his pain level down to where it's tolerable. I know what he's going through to a point. I know they have treatments that are different for men then women but I know they use the same meds to help with it.

The Urologist gave me meds that turned my urine orange and so many more I can't even name them but I just can't take any of it due to side effects. If you Nephew can take meds then he can get more help with that then I did. I will say though, I have found Drs. that are dedicated to help people with pelvic pain. More so then the RSD.

I'm sorry you are going through so much. I know where you are at. Bill became disabled not long after we were married and I became disabled 20 years ago so we struggled all of our life as far as finances go. It's never easy when you have 2 ill mates in the family.

My daughter had it the roughest because she couldn't have what others had but I was able to work up until she graduated so she did get the car and some nice second hand clothes. She's all the better for it though. She doesn't expect things to be handed to her on a silver platter.

I'm sorry your Nephew is going through this so young. I feel bad for the younger people who become ill at a young age. They have so much longer to go through this and they will always have a hard time living a normal married life and working to support themselves longer.

Hope things calm down for you soon. If you need any info on CPPS just let me know by PM and I will try and help you.

Take care,
Ada

as much as i want to go off on your sister... i just encourage you to get as much help for yourself as possible. it sounds like your sister has a lot of serious problems and has shown you that she is selfish and has no capacity to help you whether it be emotional or on any other level (even though you were such a jewel to take care of HER responsibility and became a mother to her son).

i have had to re-evaluate my life in so many ways as of late. i find that i can not bear to be around so much negativity and have taken steps to remove myself. it hasn't been easy and i don't claim i have the answers to your problems. i can't even compare.

however. just look at where your sister is. she may never thank you for what you have done for her. obviously she can't see it and has to lash out at you for being in pain - which is so incredibly horrible - but it is something you can do nothing about. she might never change and the rule of thumb is that you can only change yourself.

hats off to you for being such and incredible person with such a huge heart. you deserve a party...

Thanks you guys!
I felt so much better about the whole thing after reading your posts. I wish my nephew would just get on here one day, I know it would help him. I know that my sister is never going to change. She always wants to be the victim. One day it could be her headache, the next her back is hurting. The only difference between her and me (and my nephew) is that when she thinks no one is looking, she is fine. I don't expect to her to thank me for bringing up her son. I had to bring her up to. My mother was always working. I am the oldest of 4, she is the baby. My other sister has RSD also. She has always has had a very mild case, but she understands what Iam talking about and never puts me down. Iam hoping that if I just stick be Ray and be there for him, he will get through this. At least I can listen and not judge him.
You are all great as always.

Love Sue K.

Hello sweet Sue K. Dear, "Keep on doing what your doing with your sisters son"! Your amazing, you know that.. well, if you don't .. YOU KNOW NOW! Your sister sounds like a couple of my sisters, Sue. I have begun to not let it really bother me. You know, Sue, since I was Dx with RSD.. It seems like, It is my pain.. my body, my feeling this pain so much at times.. that I have really really have begun to not let anyone who does not know what we go through bother me as much. Hey, they don't know, they don't feel this pain.. heck, ya have to be in "OUR SHOE'S" ro feel this. Just like a alcholic, Sue.. we don't know how they feel, we havent been in their shoes, so I say.. Just ignore her, she is a pain n the "kootchie". Now, about your sister's son... Has he been Dx yet with anything? xrays taken, blood work?? Sue, I hope and pray that everything will for sure work out for your sister's son .LOL Hey, and like Mary and Froggy said.. they will knock her to the ground.. I got you "Back too" You have twins too?? I addmire you for all your doing, your an angel, Sue! Love and here are much needed hugs to you and your sis.'s son
Love, Desi