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 01-20-2010, 03:54 PM #1
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Confused RSDer's..why it is our best friends don't get it????

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
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Old 01-20-2010, 05:46 PM #2
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Hi KS.

I am terribly sorry that your friend is treating you this way. Please remember that we are all here for you and are going through alot of the same things that you are. I can understand and relate to how you are feeling. I have a few very good (or so I thought) bestest friends that I hardly even talk with now; let alone spend face time with. I really think they just don't understand. I find myself fretting about this more when I am stresses, or down in the dumps, which inturn causes my pain levels to shoot up. I have always been a championship worrier; but now it get away from me. I have to tell myself each day that I am not allowed to worry about this or that. Sometimes very unsuccessfully. I realize that you feel very hurt and betrayed by her behavior. Maybe, when you do see her you could gently bring up how you are feeling (or maybe write it in a letter to maybe send)? Once you express yourself in writing the topic tends to lose its power over you. Just a thought.

Good luck and keep up posted.

Kim
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Old 01-20-2010, 07:27 PM #3
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Default Sometimes, it's just a difference in perception

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
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Old 01-20-2010, 07:43 PM #4
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Dear KS,
I am sooooo sorry you are going through all this mess and especially alone without your best friend. I unfortunately know exactly how you feel. You have to realize that not everyone can handle our illness all the time. Give her some space and just pray. I had my oldest sister do the same thing to me four years ago. She was absolutely wonderful for several months after it happened...even took me to a doctor and then several months later I had a multiple drug overdose caused by the hospital that drugged me up and sent me home. Well, after that fiasco she has been cold as heck to me. I don't know what I did wrong but I chalk it up to some people just can't handle it. They think what they have going on in their life is so horribly more terrible that what is going on with you. I had to laugh when your friend said she had no time for you because her husband had a cold. Hello...what did that have to do with your and her relationship. My best friend has the same thing going. What her husband says is gold and she is almost afraid to stand up to him and tell him no. She has told me it is because when she was younger she could never stand up to anyone and it has gone right into her adult life. I don't get it either. When someone needs help they need help especially after you lost your job.

My son was young when he became my caretaker and he lost it about 3 years later. It took about a year or so for us to get back to where we were before he could not handle it but it was the hardest thing I had to do. It hurt horribly but I made it through. Just give them space. Maybe she used her husband as an excuse because she just can't deal with it. I have lost so many people (most of them in my family) over this illness and the other relationships have suffered as well. RSD is not only a physical illness but a social illness as well. People are afraid they are going to get what you have and become ill. I will keep you in my prayers. Hang in there and give it some time before you can sit with her and tell her how you are feeling.
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Old 01-20-2010, 11:22 PM #5
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Kim,Vanna, Kathy
So sorry to hear,,I dont hand around alot of people and you can count my true friends[ones who are there for you and love you by actions }on less than one hand,,we have alot of affiliations,but people mistake them for frends....Its bad enough that i can physical see the disease getting worse,,its the relentless pain that i cant stand,,I have gotton short with my loved ones and feel like dieing at times,,,RSD in the joints is the worst pain for me,,remember kim,,,,,,,,if someone truly loves you [anyone can say the word.talk is cheap,as my dad used to say,,dont tell me,,show me] they will love you unconditionally,,,[see my posts in the pet section,,,my pet cat, trully loves me,although she is in pain,,she doesnt let her pain get in the way of her love for me,and she continues to do her daily normal routine,day after day,,because she trully loves me,,,,I have to do the same ,,,,,we all do,,,,much love to you kim,,youve been a good friend to this forum,as well as a few others,,,,,,,,bobber
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Old 01-21-2010, 01:08 AM #6
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Teeth I want to thank you all... for your help...

Quote:
Originally Posted by bobber View Post
Kim,Vanna, Kathy
So sorry to hear,,I dont hand around alot of people and you can count my true friends[ones who are there for you and love you by actions }on less than one hand,,we have alot of affiliations,but people mistake them for frends....Its bad enough that i can physical see the disease getting worse,,its the relentless pain that i cant stand,,I have gotton short with my loved ones and feel like dieing at times,,,RSD in the joints is the worst pain for me,,remember kim,,,,,,,,if someone truly loves you [anyone can say the word.talk is cheap,as my dad used to say,,dont tell me,,show me] they will love you unconditionally,,,[see my posts in the pet section,,,my pet cat, trully loves me,although she is in pain,,she doesnt let her pain get in the way of her love for me,and she continues to do her daily normal routine,day after day,,because she trully loves me,,,,I have to do the same ,,,,,we all do,,,,much love to you kim,,youve been a good friend to this forum,as well as a few others,,,,,,,,bobber
Hello kim, Loretta, kathy, Bobber, Vanna...

I so enjoyed everything you all shared with me... Your advice was great and thanks to you..I feel better as you validated my request and feelings..as you mentioned..I did write to my girlfriend .. placing my feelings in an e-mail..thinking..what do I have to lose..besides I am feeling so sad and in the dumper..I gotz to get it out... well let me say I got a large note back which trully came down to..she is feeling very guilty for being distant due to he work and that time has been of the esence.. she also said she realized this time has been really hard on me but it has been hard on her also... she cares a bunch..so I feel better..I guess my thought is I am so emotional right now due to my health and job exit due to RSD.... I am so needy... but I never want exaust my support system... I am always afraid I may do just that... it is not our fault that we have such a nasty illness but our friends are volunteers and I hate to distance ourselves due to the constant negativity in our pain levels and dead end treatments... I want to say thanks to each of you...I feel amazingly better now and I will keep you all in my prayers.. Thank goodness we have eachother!!! Sleep tight...

Hugz... KS
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Old 01-21-2010, 02:05 AM #7
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Please smile for us...it is SO beautiful! You are truly an inspiration and a warm friend...We miss you!
Kim
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Old 02-02-2010, 09:01 PM #8
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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 #9
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Quote:
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 01-21-2010, 02:36 AM #10
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Yay!!! I am happy that you feel better!
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