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Unread 06-10-2007, 02:17 AM   #1
rsd kitti
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Hi it's nice to see that this is here. I have a teen son in high school and I am a single parent now.I got divorced in the middle of my illness . I have raised my son alone most his life. I was married the first time for almost 11 yrs than when my teen was 5 months I left my 1st exhusband got remarried when my son was 7 then got divorced when he was 13 yrs old. I am in a wheelchair going on June 14th will be 4 yrs since I had my illness a yr later I was off crutches and put in a chair I still am in my cast going on 4 yrs. I broke 5 bones in my foot and I have RSD but I have been ill since he was 2 yrs old I had a sugery that the dr didnt take time even though he knew he did something wrong and so I was on feeding tubs for almost 6 yrs the month I got remarried I was told I had to get off because what it was doing to in body I had almost died 3-4 times and been on a vent and monthly infections . So I have been holding on or a lot of yrs without keeping food inside and now this .I feel so guilty for all of this and he is the most gentle caring man so I guess I have done something right but Im in bed most of hours daily and this summer I want to put so much time doing things because this might be the last summer I have because I have stage 3 /full body RSD and its just the one last tried painful level the pain specialist have tried everything but nothing has worked to make it more liveable .My child is never been wanting me miss anything at school I always ask doesnt this me in a chair now hard on you he says no some kids ask but I dont care he tells everyone about it.He wants to start an site and a fundraiser tto help if a cure and to help more people that need medical things. He is a great kid but I feel so much guilt for being sick his hole live that he remembers and my second exhusband adopted him 4 month before me falling and braking me foot and then RSD. None of them have any rights or anything to do with them if he wanted them to . I am going to make this the best summer if I can but I need to have more help with us because my health is hanging so fast my son doent really care he has been seeing a PHD since he was 5 because I was from a divored family and thought it was me so I wanted to make sure he didnt think it was because of him so they have been helping him with my illness but we gave a great relationship he used to run in to my bedroom and jump on to the bed and tell me I always said to him one day he will not want me to know everythng and it started after I broke my foot after we had my ex arrested he was so happy and he said that he feels like he didnt tell me so it was his fault so we talk about that I say no all the time to him and he wouldnt even hug me or anything he aid it was because of my pain I remind him that I hurt know matter what so he isnt going to hurt me anymore and I would raither he hug me and kiss me then nothing so he is starting to go bak to the way it used o be and he is laughting again the last month at least once a day so our life is starting to come back put he has medical issues to heart and touretts not voice motion motivement and OCD and anxity disoder so live has always been different but he says what family is normal we are the closest he says compaired to other friends live and he says he is the luciest because Im here when ever he needs me or he says all his friends think he is so lucky they all know me before the chair and after but they think he is so lucky because Im here and I would do anything and they say Im still as fun as I was but Im so tired and my son has started telling me that he can see the big change in me in the last few months I have a hard time writing and seeing ect. Im now been getting bad headache, I only see colors and my emails like spelling and my thinking is very bad so I hope this makes more sense. he sees that I need more help so Im asking my dr to get me some we used to have help but I cant work so I cant pay for it anymore so I found out my insurance does so Im really glad know. So can somebodie tell me how not to be more guity feeling. I dont know how to and the guilt I have more and more everyday its getting harder he never says anything to make me feel bad but I do more and more..............So if anyone can help me then that would be great because of my guilt is harder and harder. I would do anything for my son he is my everything I keep making a promise to myself keep fighting so I can see him graducate high school 3 more years if longer I would love that because Im only 39 I was 37 when this accident happned. Learning to be a mom and dad and everything in a chair is hard and learning how to do things how to learn without any help how to be everything from a chair I havent walked in 4 yrs and have had the same walking boot on its so hard life is so different but Im trying so if anyone can help that would be great. I will check here and you can find me in RSD fourma Reflex Symphectic Dystophy.

Thank you to everyone.......................

Gentle hugs
Karen/ rsd kitti
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Unread 06-10-2007, 06:24 AM   #2
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karen--your son loves you so much..it is so very clear here..he is very special and was raised to value "family" which too many children are not. guilt is a hard one for we always put so much guilt on ourselves--sick or not-- but we can only do what we can..me writing about this subject is crazy-- i am the queen of guilt--i blame myself for losing my entire family..my mom and i raised 4 mentally and physically handicapped children for over 25 yrs..when she passed in 1993 i was granted guardianship of all the boys--2 foster boys and 2 adopted boys. then i was injured.. and the state took my 2 foster kids away ,due to my injuries) i then made a decision for david (my baby,my life ,my soul) to get an ileostomy surgery, due to his chrone's disease. to make his life a better one..surgery went well but i took a break and left him with his one-one aide she did not listen to the instructiions given to her ...and left him alone--he fell out of the bed fracturing his left hip==which lead to another surgery and the phemonia that killed him== if i didn't take that one break he would be here right now...
i still have my adopted- autistic brother terry..who i can no longer give him the life of love and fun that we once had..my soul is crushed.my body worse.. and it is so unfair to him..do i put him in a group home?? to give him the best of life?? what if i make a mistake and just because i need a break (again) something happens to him??
your son knows and understands what you can and cannot do...my brothers didn't understand==all they knew was that i made them leave their home...
well this was not suppose to go this long and be about me---just say we all have our guilt and we all need to fiind the strength to do what we can when we can--i am kinda running on empty these days but will send you some of my extra hidden strength to help you thru the next minute-- take care moonstar
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Unread 06-25-2007, 04:33 PM   #3
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Hugs. I can't give any advice on the feelings of guilt as I too feel those feelings and have not yet figured out how to make them go away.

However, I can offer up some advice on what my mom did with us 3 kids when my dad left when we were just 7, 5, 3.

Through our church, she found a mentor, a big sister type person, to help me deal with my issues. To give me a break. Breaks don't need to be taken with you or the child out of arms reach. Even someone to come in and play video games with your son in his room might be all your son needs for him to feel release from the normal everyday situation, and maybe even for you to feel like you were able to give it to him. That might help your guilt.

My mom remarried my father when I was 13, but from 7-13 she did it herself, and she had cancer twice (survived).

There are people who want to help. There are people who, by helping you and your son, feel like they have been helped.

Good luck.
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Unread 06-25-2007, 08:31 PM   #4
rsd kitti
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Dearest moonstar and Christine,
Thank you so much for understanding the feeling because we are moms and ill. Im soory moonstar that i havent written back intil today. You both have shard your feelings and yoour guilt I have not been able to email back my headaches and other problems are getting worse and I have been in bed straight without even getting up for the restrrom for over a week I cant get my head off my pillow I go Thurs. to get the MRI . I am scared beause know matter what the see my specialist says Im up the creek. I had my mom finally come Sat because I had home health social worker came to help see if there is things that would help me and she knows what aresa to go and my thinking isnt good anymore so I needed someone here. my mom came I knew this lady before when my dr asking for this she asked what do I want to do I said not be here anymore I dont and cant do this . She had tires in her eyes we spent alot of time together before and she know what kind of mom I am and it was sad for her to hear me say that knowing me. My mom even had a sad look. She said that because a week before a nurse was out and said it might be time for hospic to get involed I saidd no .I worked as a hospic nurse all my life half my live for 15 yrs about. she asked me if I thought about assistance living I said yes when my son is in college he will be in 10th coming up school year see said okay for now but to think specially after the test them i said what the nurse said she said oh really okay then she was going to check into long term necause what they do is get people who will and people who care and love me together and talk will a PHD annd tell them how imporant it is ffor supporting me in things I need and how I feel and how they fell I looked at my mom and she she yes that wouls be great I said yes then maybe they can understand me, so we will see.I dont think my mom will and my dad has cancer for the second time and he is 8 hours away and we both have pulled away. so there is no one but people here and Im on myspace and I have meet wonderful people and small groups that are getting chairs and meds and things that we cant get for them so I get to talk to them eeryday when I can I started helping with a concert here to raise money for them so I have gotten involved but the headaches have slowed me down I cant do much now and I cant drive anymore so its taken that away but they people are coming here on the 5th for an intervieew her daughter is 16 and she is very bad right now. But THANK YOU BOTH FOR BEING HERE AND LISTENING AND TALKING AND I HOPE WE CAN DO THIS AGAIN AND CHECK IN WITH EAACH OTHER.......................My hearts go out to both of you Im here anytime to I can listen also so please use me................Thank you....I want to wriye more but Im having a very bad day. I will let you know what happens........

GENTLE HUGS TO BOTH AND REALLY THANK YOU Karen / rsd kitti
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Unread 06-26-2007, 09:33 PM   #5
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Karen, I know that this will sound generic, but dear, you really have no reason to feel guilty about your son. When you think of all the parents who can do just about anything with their kids, but then choose not to...well, they are the ones who have real reasons to feel guilty.

Giving your son all the love you have is the greatest gift he'll ever have in his life! My youngest daughter was five years old when I became ill, and she has spent nearly the past five years spending most of her time with me. We read books, watch movies, and have a really good time, but I know that she has given up many things she would like to do simply because of me, and for the longest time that made me feed terribly guilty. But then I finally realized that I should be proud of her, because even at her young age she was capable of figuring out what was most important in life.

I do so hope that you get your help, and manage to make this the greatest year that you and your son have ever shared! But please don't waste one minute of it feeling guilty.
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Unread 06-26-2007, 09:36 PM   #6
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Karen, I know that this will sound generic, but dear, you really have no reason to feel guilty about your son. When you think of all the parents who can do just about anything with their kids, but then choose not to...well, they are the ones who have real reasons to feel guilty.

Giving your son all the love you have is the greatest gift he'll ever have in his life! My youngest daughter was five years old when I became ill, and she has spent nearly the past five years spending most of her time with me. We read books, watch movies, and have a really good time, but I know that she has given up many things she would like to do simply because of me, and for the longest time that made me feel terribly guilty. But then I finally realized that I should be proud of her, because even at her young age she was capable of figuring out what was most important in life.

I do so hope that you get your help, and manage to make this the greatest year that you and your son have ever shared! But please don't waste one minute of it feeling guilty.
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Unread 06-27-2007, 12:06 AM   #7
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Thank you Idealist, You are right and kids always if you raised them with everything you have they do understand. I have been ill with something besides RSD since my son was 2 years old he is 15 now. Its been me and him most of his life maybe I feel more guilty of that because I always wanted him to have a father and my 2nd ex adopted him and waked away to but you are right we are so close and we share things we talk openly so he knows he can always come to me I might freak for a few minutes but if I didnt i wouldnt be the mom I am and all his friends even say he is so lucky to have me as his mom .So you are right and thank you for saying those nice things. I think the last few weeks have gotten better someone said because i keep saying to my son where do you want to go France , Spain Hawaii London anywhere he says I dont know i didnt get it intil someone that made a nice compent to me on myspace he someone I dont know he doesnt have kids and he is in his mid 40s he said I hope you dont mind but I saw the pics of you( Me) and my son and the poem my son wrote about me and he said he just wanted to say that we are so close and seems like we are so close and he said that he is still a mommys boy at his age and so will my son and I should love it and this man just like you took the time and its I think is more real when a man says what you did and what he did because you are men real men to me and he even like you said listen to your son he doesnt care about going somewhere nice like those places its you and maybe little ones here and there and the rest curled up even at 15 and watch a movie together or he loves to read at a college level he can read to me and we can do art things he wants to do a page on RSD and run it and have it in my honor .I think you are right we both are lucky it sounds like it to me we did something right we our wonderful kids and I shouldnt feel bad even through he doesnt have a man in his life because he might of been like someone ealse and if his friends are wishing I was there mom that makes him fell wonderful and special. I feel greatful I wake up and love him every minute and I will always be part of him .I wouldnt change him and I need to try not to fell guilty I do need to just enjoy every time we laugh and smile and cry and all the things and enjoy people that are having the same fellings so Im not alone . Thank you for taking the time and helping me through this I hope I can help you also oneday with something. Im here usually RSD area but Im here. THANK YOU FOR EVERYTHING YOU SAID ALOT.........................Best Wishes to you and your kids (IM sorry Ithink you have more than one if not sorry) Best to you Karen/ rsdkitti
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