[Kakimbo]

Please help me/

I have two teenage kids; 18 and 15. They just don't seem to understand about RSD. I have talked with them about this; however, it just doesn't sink in. When I was their age, my grandmother had cancer; so I can understand that they don't grasp it.; However, they continue to be cold and unresponsive to my needs and concerns. How can I possibly convey to them the magnitude of this crippling disease and also relay to them the coping skills they surely need? I have resorted to turning their cell-phones off as a matter of discipline; in which I feel horrible about. They continue to "diss" me even after I have tried to enforce my (not horrible) threats to them. I tend to over-compensate to make up for my shortcomings. In which I feel has led to this situation. I would appreciate any advice and/or lecture on this subject. I am heartbroken over this. So, any advice is more than welcome~ Thanks!

[tjack]

Hi!
You don't know me I am new to this site & RSD, but I am not new to raising 4 children while battling a devastating, painful, and energy draining disease.
For me at that time of my life it was Chrohn's disease. I realize now of that bottom line it is just too hard when we are that young, full of so much energy, and zest for life, to have the compassion and understanding that those of us with a disease or disability needs. This comes with time and age. Trust me they will grow up and they will learn the compassion and understanding they need as long as they are taught it by you. Show them compassion and understanding and most of all just LOVE them and yourself thru it! Love is the greatest teacher and gift that we can give and instill in our children. It is definately one of the things that RSD or any disease or disability can rob from us. Just love them thru it unfortunately right now it is your job to teach them compassion and understanding thru LOVE. They will soon grow up and have the compassion and understanding that you deserve and need, and much sooner than you think, you will look back and think that it was just a blink of an eye. I know I sure do. LOVE them and yourself thru these times and don't let RSD rob you of the one thing you do still have control of. God Bless I will be praying for your love, compassion and understanding and for your childrens hearts to be able to recieve, respond, and reciprocate. Hang in there!

[SBOWLING]

Hello,

As you learn to cope and deal with your RSD/CRPS your kids are dealing with it to.

I have two kids and when my life started changing due to RSD my kids were teenagers. They don't always have the compasion and understanding at that age that we want them to. My kids use to say we want the old mom back. I told them I did to but she is gone and may not be back and we have to accept that. I told them somedays I will be the old mom and some days my health won't let me be the old mom.

Right now their life is all about their world. To some degree they understand they may be in denial. Their denial may come back to you as uncaring and unsensative to your needs.
Give them time and most of all give them love.
They are still young and have some maturing to do.
I hope the situation improves the stress from it is not good for your pain level.
Take care,
Sherrie

[Kakimbo]

Thank you. Very much. Sorry for you; but glad that you understand.

[keep smilin]

Originally Posted by kim ames

Please help me/

I have two teenage kids; 18 and 15. They just don't seem to understand about RSD. I have talked with them about this; however, it just doesn't sink in. When I was their age, my grandmother had cancer; so I can understand that they don't grasp it.; However, they continue to be cold and unresponsive to my needs and concerns. How can I possibly convey to them the magnitude of this crippling disease and also relay to them the coping skills they surely need? I have resorted to turning their cell-phones off as a matter of discipline; in which I feel horrible about. They continue to "diss" me even after I have tried to enforce my (not horrible) threats to them. I tend to over-compensate to make up for my shortcomings. In which I feel has led to this situation. I would appreciate any advice and/or lecture on this subject. I am heartbroken over this. So, any advice is more than welcome~ Thanks!

Kim....

I so understand how our illness is hard on our kids... My children are currently 13 and 16.. boy and girl.. I was diagnosised 2 + yrs. ago... not a day goes by that I don't feel bad for my kids and my husband in that they have to see and live this horrible disease along with me ...I am very concious of my "gaitly walk" and moods swings and lost disires and need of answers... it is a hard pill to swalllow for them and it was like yesterday I was their age.. I remember what it was like battling the stage they are currently at and that is a bunch already on their plates... I try to be patient, although.. it is not always easy..keep in mind "understanding is accepting" and who wants to accept and see their Mom, loved one going down such a sad road???? I would like you to know that just two nights ago..I had an apt. with my councilor (yes, I gave in and final began to see one due to my RSD).. and my daughter, the 16 yr. old asked to go along.. when we got home she said she really enjoyed going with me and asked if she could attend all of my sessions with me. Have you thought to possibly involve them in that type of setting?? I didn't plan that but it seemed to have a favorable outcome... and it was just very light, giggling conversation.. sometimes hearing facts good and bad from someone else helps..Not for one second would I change places with my family..I rather I be the sick one as it pulls my heart out watching what it does to my family.. esp. kids... please don't punish over this reason or situation... go the other way and pour out the love..you'll get alot more respect and understanding in return...they will connect better and eventually strive to help and please you...

Keep us posted.. and heres to a low pain level day!!!

[SandyRI]

Hi Kim - my kids are 19 and 15, girl and boy, respectively. We have tried to keep everything around the house about the same as possible, despite my illness, because of the kids. It's so hard. My oldest is a freshman in college and is living away from home this year, so only my son is still at home. Mostly I feel bad because of the meds since they make me tired and I'm no longer available to drive him and his friends around as much in the evening. But my husband tries to pick up the slack whenever he can, and I think for the most part our kids are pretty lucky!! They still have a mom and a dad that love them and care about them!!

[AintSoBad]

Kim,
When I was diagnosed with RSD, (7 years in), my children were about 3 daughter, 8 son.
I was put on methadone. Wife didn't want to live with a "Drug Addict", She left, and went out on the town imbibing in every street drug there was. I raised my children, and it hurt!
What was my secret?

I didn't ask for anything, I gave them so much love, and kindness, I took a "Positive Parenting seminar". (No punishment, Positive reinforcement). You can google that, it's the big rage now.
But, what I'm saying is, I gave my children so much, of what I desired from them, that they were overflowing with it, and had plenty for me!
I didn't need to ask for anything. We all took care of each other.

Then my second accident came, first wife colluded with second, theft happened, children warned me and saw it, now they've moved away and don't speak to anyone.
I have a grandson, whom I've never met. About a year and half or two old.. guessing.

It's very sad. I was so happy and proud, but, God had other plans.

I'm not so worried. (I do believe the first divorce hurt my son more than it hurt me).
I don't miss my wives at all, I shiver, thinking about being there. But the children, I know, want the love back. Everything they do now, is compensation.

Time. Patience. Faith.

I think that's all we can do. And, Never try to "force" love from them!
That will surely backfire!
They're children, they want to do teenage things! He'n and She'n. Like that.

Kim, they're forever yours. Don't forget it!
It's a stage. NOT, the "way it is".

Pete

asb

[loretta]

Originally Posted by AintSoBad

Kim,
When I was diagnosed with RSD, (7 years in), my children were about 3 daughter, 8 son.
I was put on methadone. Wife didn't want to live with a "Drug Addict", She left, and went out on the town imbibing in every street drug there was. I raised my children, and it hurt!
What was my secret?

I didn't ask for anything, I gave them so much love, and kindness, I took a "Positive Parenting seminar". (No punishment, Positive reinforcement). You can google that, it's the big rage now.
But, what I'm saying is, I gave my children so much, of what I desired from them, that they were overflowing with it, and had plenty for me!
I didn't need to ask for anything. We all took care of each other.

Then my second accident came, first wife colluded with second, theft happened, children warned me and saw it, now they've moved away and don't speak to anyone.
I have a grandson, whom I've never met. About a year and half or two old.. guessing.

It's very sad. I was so happy and proud, but, God had other plans.

I'm not so worried. (I do believe the first divorce hurt my son more than it hurt me).
I don't miss my wives at all, I shiver, thinking about being there. But the children, I know, want the love back. Everything they do now, is compensation.

Time. Patience. Faith.

I think that's all we can do. And, Never try to "force" love from them!
That will surely backfire!
They're children, they want to do teenage things! He'n and She'n. Like that.

Kim, they're forever yours. Don't forget it!
It's a stage. NOT, the "way it is".

Pete

asb

Hi Kim, As a mother, I know this is very painful for you. I got RSD when our daughter was 15. My husband and I are grateful we signed up for a parent communication class the beginning of middle school-age 12. It was a fantastic class regarding communication, asking for what we need, settling differences, letting go as they grow up, etc. I'm going to try and find the titles and PM them to you. In book stores, in the self help section, are many parenting books that have skills written out. We did role playing in the classroom. It was just parents and the school couselor-not students.
I'm fortunate my daughter and husband did some research of their own, so understand more than average person, plus my daughter is a court reporter and did a deposition on RSD a lady got and was suing her Dr. I know my daughter and husband have lost a lot due to me getting RSD. So many loses. No easy on either of them.
I'll try to get the name of the book and write you. Have you thought of giving them each an assignment of looking up RSD and writing a report on the condition, it's affect on the patient , the children and marriage mate. That would be interesting to hear their views. Take care, and please let us know how you are doing. Your friend, loretta

[Kakimbo]

Pete; asb. I hurt for you, but think I can understand. My kids thought it would be "cool" to live with their dad in Ocean City, MD (which is a HUGE party town). No curfews, no limits; you get it. Why live with a parent who instills rules and regulations when you can live with none? I know that when I was 18, I would have taken the high road to enlightment (and I did!~) Yet, they call me to help them with important stuff and to help me deal with their Dad. Studying over the phone for SAT's. Sending credit card payments for Senior Pics., etc. I am with you! Maybe we should start a support group for "Unthankful Kids!" We just cant help but love them, though! SUCKERS!

[SandyS]

HI Kim,

I am just going to say how I feel after reading your post. First, they sound like typical teenagers. My oldest daughter now 21, when she was about that age, It was a difficult time. I would refer to it as regression, she regressed to being a two year old again, I also called it the me, me, me, it's all about me stage, no one else just me, me, me! I didn't think as a mom, I was going to survive. Their frontal lobe has not developed yet, they can't really grasp what you are going through, they are trying to deal with what life is throwing at them right now. google, frontal lobe development in teens, see what you can find. They know what you're going through, they just show it differently. As you know, my daughter with RSD is 16 years old, and even though she is going through what she is going through, she is still a TEENAGER. Holy, Moly~ It's God's way of getting you ready to let them go, when they head off to College, become adults. You can look at this as a life lesson. Set limits, Kim. They need guidance, they understand what you are going through, they may not know how to show it to you. I know, because I am the family member without RSD. It's hard, you don't know what to say most of the time, we don't know how you are going to react, we don't know your pain, we only see it, we live it with you and it's hard to understand. Maybe some family counseling would be a good thing, but, if it is disrespect that they show you, there should be no room for that!

I am going to pray for your family, keep your chin up, I get dissed all of the time. We are parents and that's the way life is with teenagers. I've learned that when my teenagers start to raise their voices or they act like the me, me, me, two year old, I use a normal voice. I don't raise my voice and they have no idea what to do when there is no conflict. Take a deep breath count to 10, and know that in just a year or two you will be dropping them off in 2x4 dorm room, and you will CRY all the way home. You will miss the dissing days, and I promise as they hit 21 years they come around, but try to make it through, because you do not need to let this stress make your pain levels higher.

SandyS

Originally Posted by kim ames

Please help me/

I have two teenage kids; 18 and 15. They just don't seem to understand about RSD. I have talked with them about this; however, it just doesn't sink in. When I was their age, my grandmother had cancer; so I can understand that they don't grasp it.; However, they continue to be cold and unresponsive to my needs and concerns. How can I possibly convey to them the magnitude of this crippling disease and also relay to them the coping skills they surely need? I have resorted to turning their cell-phones off as a matter of discipline; in which I feel horrible about. They continue to "diss" me even after I have tried to enforce my (not horrible) threats to them. I tend to over-compensate to make up for my shortcomings. In which I feel has led to this situation. I would appreciate any advice and/or lecture on this subject. I am heartbroken over this. So, any advice is more than welcome~ Thanks!