Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 01-26-2010, 12:29 AM #21
Kakimbo Kakimbo is offline
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I want shoo-fly pie!

That sounds YUMMAY!

(I am only kidding. I want you to be happy!)
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Old 01-26-2010, 12:37 AM #22
loretta loretta is offline
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Originally Posted by keep smilin View Post
Hello everyone.. I have to toss this out there and please..all ...help me..but today I am feeling pretty sad as my dear bestest girlfriend..who has been so good to me the past 3 years...is so enthralled with her work (I understand that part...) and homelife with two dogs and husband obligations lately.. (sounds quiet compared to us having kids and the schedule xtra's, right??)..... Iam screaming..help..plz.. me... I am unraveling here..As some of you know, I just stepped away from my work of 25yrs. due to my RSD in my legs and no longer walk well enough to be there..not mention the spread I now have going on...Just today I mentioned to her it's not her work but plz fit me into some solo time and how I have called the last few weeks...invited her to lunch and seeked her out a bunch lately cuz I need my friend to possibly cry with me... but all I got so far was her work has been incredibly busy which she is so very sorry for and that her husband had a cold over her 3 day's off...so she couldn't visit with me... I have told her how devestated I am the longer I have been home (since 12/3/09) and how until one has to walk at 47 due to this reason..it's real pain that others don't know... so far no reply...

Okay everyone..guide me here.. I don't want not do I believe in pitty but this is the one person besides my husband and children that I have connected with almost everyday for 3 years...and she always said..how are you feeling?? I thinks she cares but due to her quiet life.. she over plays her demands... and I need her..

KS
Hi KS,
There is no doubt our lives have been turned up side down with RSD. It's a major change in our life and is bound to affect our relationship with family and friends. Before RSD, I had over 2 years of counseling due to the death of my parents. Besides weekly counseling, I attended grief seminars, and other various seminars.plus read about 50 books. One book that is basically a communication skills book is Life-skills for Adult Children by Janet Woititz and Alan Garner. It is in paperbook for $8.95. The following are some of the chapters: Making Contact With Others, Expressing Feelings, Active Listening,
Asking For What You Want, Giving Others What TheyWant, Solving Problems, Asking Others To Change Their Behavior, Handling Criticism, Establishing And Defending Boundaries, Fighting Fair, Ending Converstations, Ending Visits, Ending Relationships. When my daughter was about 12, her school counselor had a 2 week class for parents with these topics. It was really helpful in family communication. Journaling is also something I did in counseling and writing letters, but not sending them to resolve certain issues with individuals.
I hope the best for you. I think I sent PM to you, so please excuse me, if this is a repeat. Take care-your friend with soft hugs
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Old 01-26-2010, 09:01 AM #23
keep smilin keep smilin is offline
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Originally Posted by loretta View Post
Hi KS,
There is no doubt our lives have been turned up side down with RSD. It's a major change in our life and is bound to affect our relationship with family and friends. Before RSD, I had over 2 years of counseling due to the death of my parents. Besides weekly counseling, I attended grief seminars, and other various seminars.plus read about 50 books. One book that is basically a communication skills book is Life-skills for Adult Children by Janet Woititz and Alan Garner. It is in paperbook for $8.95. The following are some of the chapters: Making Contact With Others, Expressing Feelings, Active Listening,
Asking For What You Want, Giving Others What TheyWant, Solving Problems, Asking Others To Change Their Behavior, Handling Criticism, Establishing And Defending Boundaries, Fighting Fair, Ending Converstations, Ending Visits, Ending Relationships. When my daughter was about 12, her school counselor had a 2 week class for parents with these topics. It was really helpful in family communication. Journaling is also something I did in counseling and writing letters, but not sending them to resolve certain issues with individuals.
I hope the best for you. I think I sent PM to you, so please excuse me, if this is a repeat. Take care-your friend with soft hugs
Kim.... you shall have the shoo-fly pie.. if I could find you I would be sure you had some, my friend!! plus thank you for the happy wishes!!!

loretta.... Thank you very much for the visit and also...I love the thought of that book..I shall buy it... thank you.... I do journal and ofter share it with my "brain checker" she often asks me what i have written lately... I do write notes..often end up sending them however.. can't say my friend has not been honest..she is just too busy right now with life, understandable... just that I am at such a cross raods right now due to my leaving my work (we work for the same company btw..) and i am very needy.. RSD plus loss of my work... Guess what I am trying to say is this is so painful....

Hugz for you all... have an enjoyable day,

KS
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Old 02-02-2010, 09:01 PM #24
Courtw84 Courtw84 is offline
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I think its a hard thing. No one really understands it. I don't even quite think my boyfriend on 2 years understands totally. He act's like he does, but sometimes I think he gets tired of me hurting, and/or talking about it!!! It is really hard being a young girl who can't stay out as long, and can't handle as much as my friends!! It's really hard!!!! I really don't think there is anything else to do, but pray and hope that people understand. But I don't tell people. VERY few people know! I think its best that way. People know I hurt, but not really what I "HAVE"
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Old 02-02-2010, 11:28 PM #25
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Originally Posted by vannafeelbettr View Post
Sadly, what happens is the relate-ability factor that you two once shared together has changed, and that may inevitably cause distance to grow between you both. Her daily life and your daily life are so different, your life's perception is altogether different. The real difference is, you can relate to her life, because you once HAD that life yourself....so you "get" her. She, on the other hand, cannot relate to your daily life (even though you tell her, she still can't truly imagine)..... which may unconsciously make her feel uncomfortable. She doesn't "get" you. Make sense?

Nonetheless, she could simply be going through a busy time in her life, and you may be taking her distance too personally (you are probably very emotional right now with the big, recent changes in your own life). Perhaps she is exhausted, depressed herself, or really is avoiding you because she may feel guilty because she still has her health and career and feels she doesn't want to be a reminder of the person to you of the person you used to be. Give a little time, and write her a letter (as suggested by the person preceeding me). From my own experiences, I have also lost good friends..... a lot of it is due to strained finances. With not working (and medical bills out the wazoo), nobody is calling to invite me to do anything or go anywhere because 1.) they know I can't afford it and 2.) I may be having a bad "pain" day and cannot do all the walking involved.

Good luck and hang in there. Hopefully you will get the answers you need soon

Vanna
You are exactly right...some of my friends are sympathetic, but if I am out without my cane they are, "Wow, you're better!" ...no it's just that the pain is not as bad today and I want to look "normal"
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Old 02-03-2010, 08:52 AM #26
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You are exactly right...some of my friends are sympathetic, but if I am out without my cane they are, "Wow, you're better!" ...no it's just that the pain is not as bad today and I want to look "normal"
Even for my RSD smushed up brain I can make sense of this...Funny, how I expect my family and friends, my best friend to make sense of this crazy RSD rollercoaster ride we are on when we can't even make heads or tails about it ourselves.... it messes with our lives, or minds our physical bodies on and on..and it never stays the same as in progression...my... even look at what hours we are all up in typing out threads/posts... we can't even sleep.. gracious.. but one thing I know for sure is RSD can not touch... that is what is in my heart..the love for the people in my life and my zest and desire to live the best I can each day and allow tomorrow to slide (as who are we to desifer that?)...... I will always hold that in my heart... it's mine for the keeping.. it crushes me what a mess RSD makes of our lives let alone the lives of those we care about.. including all of you here... I am so lucky to have you all here.. and I care about you all in that you are having a nice day...today and tomorrow..and there forward!!!

Hugz, KS
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