Guest guest Posted September 27, 1998 Report Share Posted September 27, 1998 Hi Folks; I know, I know, shame on me.. :- ( I haven't wrote in so long, you all probably forgot all about me.. *bummer!! Anyway, I have some excuse's, but not too many.. lol The typical stuff, teen troubles, puter crash, Major !! I lost it all, had to have whole puter reformated.. what a pain, and very expencive too, I swear that I have SUCKER stamped on my forehead. I got to reading the digest again, #134, and was wanting to comment on a couple of things.. a) first get used to the fact that most times I don't remember how to spell.. not kidding either.. lol b)as far as responding to digest every day, hard for me to do most of the time, as my pain is full body, but the spine is the worst ! ! c)My gramer you will notice stinks some times, actually to be honest, it stinks most of the time.. lol d)Last but not least, by any means.. *giggle* I have a terrible time with my memory !! It is the short term memory that is the worst effected and is both the most confounding problem, as well as extreamly embarrasing at times. I would like to know how we as people with chronic pain conditions, can some how recieve moral suport from both family and friends.?????? The last few days, I have had a frustrating time with my father, over a fencing issue. Today I went over there to do this job, and after over 2 1/2 hours of just getting the pieces ready to attach to the fence, I was exausted !! Then he has the arogance to say to me, that a job that should have taken only 5 min. took me much to long, and that I did it wrong also !! My arms are so sore, from using a hack saw, a electric drill, and a hammer, as well as wire cutting pliers (sp). Any way, I eventually got to the point of putting up some of this stuff, and then didn't have enough, so have ot go back tomorrow to finish the job !! AAAAARRGGGGGGGG !!!! I don't know how I'm going to get it done ! the pain will be out of this world by tomorrow. My mother is a witch as far as not being at all suportive about what I have been dealing with for more than 10 years now. She makes all sorts of comments about people that take pain meds being wimps.. Some days, I think the only way she would ever really understand, is if she too was dealing with the same type of pain on a daily basis; She puts me down in the most frustrating manner, all inuendoe' (sp), which makes it very hard to say anything about it at all. She is always worse when there is extra people in the house, like visitors or family.. I wish I knew how to deal with her, so that she can't stress me out so much. If it wasn't for the fact that I keep my therapudic ridding horse at thier house, I would never go there ever again. Enough whining for this time.. *grin*, Thanks for listening to me. ~~ Roselynn ~~ ICQ 15861071 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 1998 Report Share Posted September 28, 1998 Roselynn, don't think we have met yet, so hello. I am Lyn, I have the alphabet soup list of diseases, mostly RA...so won't go in to it, suffice to say I HURT. I can't really give you advice on how to make people understand and sympathize. You can't MAKE anyone do anything. But I can tell you I understand. Makes you wish you could give them just 5 minutes of your pain. Just 5 minutes. THEN, theymight get it.Doctors too. Maybe simply learning to say NO. I cannot and will not do that. Maybe learning to just let it slide right off and ignoring it.( I am not good at that either, but I am addressing it and trying to learn it.) Decide what is important and let the comments just go. Hey, you have us! And we all understand. Feels better after ranting. So go right ahead, anytime. Had one the other day myself, right here. God bless you, Love, Lyn No God,No Peace. Know God,Know Peace. http://home.talkcity.com/spiritcir/lynmari/index.html Join the arthritis warriors at: http://www.onelist.com/subscribe.cgi/rheumathritis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 1998 Report Share Posted September 28, 1998 Hi Roselynn, It's good that you were able to get your computer back and running, bad that it cost you so much :-( I don't pay much attention to grammar and spelling online. The only thing I find difficult to read is when someone posts a message and it contains NO punctuation, little capitalization, or any sort of breaks in the message! I honestly can not read it! It all blurs into one big jumble of letters and usually I give up trying to read it. If I've had a goodly amount of pain med in me or it's late in the day (which means I've taken a fair amount already) then I don't even look at the message, I just delete it. I understand memory loss. I don't have as much problem with short term memory loss as I used to but occasionally it still hits me and hits me big-time. Mine is from the pain meds. Although I have FMS I've not experienced the fibro fog that many with FMS have. Or maybe I'm so out of it I never notice! ;-) Moral support from family members: I'm very blessed, I have a wonderfully supportive hubby, incredible really, and the rest of my family has never indicated that they don't understand nor have they ever expected anything of me that I'm not able to do. They accept when I say NO when they'd like to hear yes. About the only problem I used to have, it seems to have subsided, is when they want to talk about my spine injury and surgery and the consequences of it but then they get this look in their eye and change the subject after a few minutes. I learned that this is their fear of my pain... they think, " OHmyGAWD, this could happen to ME!!! " and it scares them good. My brother used to want to talk about the medications I take but he doesn't anymore when I told him, after hearing him tell me the evils of all things...the diazepam I take for spasms (nevermind the narcotics I take), that I have a doctor who I trust and if he wanted to discuss my medications with her I would give him permission. He never talked about it again. Probably the worst family member I have is my sister. She has a huge amount of problems of her own (she abuses alcohol) and also works in a pharmacy as a tech. Thus she thinks she knows everything about everything when it comes to medication and illness and never hesitated to lecture me or 'inform' me. This problem ceased when I told her, about a year ago now, that I couldn't continue letting her call me or email me when she was drinking because her behavior at those times was abusive and I couldn't deal with it anymore. She now will not talk to me at all. So the lecture and inform problem has gone away also. I used to have a mother-in-law (I was married before and the injury/surgery happened a year after I was married to him) that was like your Mom, thought only wimps took pills and only wimps had pain and I wasn't REALLY in that much pain, now was I?? Among her other attributes (not necessarily good ones) she was a snoop and before I had the surgery ... I had surgery 2 months after the injury... she went through my things when we were at their house and she found the bottle of pain killers. I was EXTREMELY annoyed (to put it mildly) when I found out and my ex really laid into her about it. Thankfully I haven't had to deal with her in 6 yrs. I know this is easy for me to say but perhaps what you need to do is to tell you Mom and Dad that you can NOT do these things for them AT ALL, especially if they think you have to do them 1-2-3 !! Also perhaps you can start not discussing your health situation at all with them since they are not supportive in any way. I have a friend who is a psychologist tell me once that when you are dealing with or facing a difficult time or decision you should, if at all possible, surround yourself with people who are supportive, non-judgmental, and discreet. And move away from, or change the relationship, with those who just are not able to be supportive, non-judgmental and discreet. I know this is your family but you do have to think of yourself also. Good luck! CULater, Ruthie =========================== Ruthie Cunliffe K2ZQ ruthie@... http://www.cunliffegroup.com/ruthie/ Oh, no! Not ANOTHER learning experience! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 1998 Report Share Posted September 28, 1998 Ruthie, Boy girl, you said a mouthful that time! Boy Howdy! Can I relate! I had to literally pick up and move away from my " family of origin " . Alcoholism, drug abuse and codependency issues will eventually " eat your lunch " if you let it. It is not easy to watch the ones you love destroy themselves and try to take you with them! Abandoning the " tribe " is one of the roughest things I had to do. They had already abandoned me after I had to start saying " NO " to them. I could not take care of my own responsibilities any more, much less theirs. They had chosen the worst possible time of my life to do it. During this time, my oldest son finally revealed to us that he was terminal with AIDS. I am blessed that I was able to get him home to Ohio from California in order to spend the last two months of his life with him. During this time, everyone else was off on a drunken rampage and madder than hell at me. Since I had been " the prop " for most of my life, when it came to me being the one who needed some " propping " ...guess what? Right, none of them were able. Except for my one blessed sister who took time away from her nursing job and drove a 1000 miles to be with me during his funeral. During this time I had been in a shelter for victims of domestic violence, as well as a homeless shelter (two doors from a " crack house " ) for ten days. The choices were limited. My back curled up into a question mark, and I could barely walk. My immune system hit the floor. I was eating Soma (muscle relaxers) to try to kill some of the emotional pain. I got so toxic, I got the thrush in my mouth so bad I could hardly swallow. I was literally choking on the pain, and could have easily let go and died with my son. I took a leap of faith and with my window broken in my old '79 Chevy, I packed a bag and fled! I vowed that I would rather sleep under a bridge than put up with all that crap any longer. Two years later, I am still in some pain, but I have my own little apartment and my own little world; a few friends; some Angels among them...and peace of mind and I continue to heal and grow. It can be done and sometimes is very necessary. Like chemicals that are poison to us, there are toxic people. If they hurt to be around, then get the hell away from them and stay away from them until they decide to treat you with the respect and consideration that you deserve. It works! Absence does make the heart grow fonder. If you allow people to use you, they do not respect you, IMHO!! Forgot to mention, my cyber family! Don't ever mess with my cyber family, especially the ones on this list and the MCS list. God bless and sustain each and every one of you. Huff, pant, gasp...whew! Long winded today, eh?? Love and PEACE to ALLLLL, Diane Ruthie Cunliffe wrote: > > > Hi Roselynn, > > It's good that you were able to get your computer back and running, bad that > it cost you so much :-( > > I don't pay much attention to grammar and spelling online. The only thing I > find difficult to read is when someone posts a message and it contains NO > punctuation, little capitalization, or any sort of breaks in the message! I > honestly can not read it! It all blurs into one big jumble of letters and > usually I give up trying to read it. If I've had a goodly amount of pain > med in me or it's late in the day (which means I've taken a fair amount > already) then I don't even look at the message, I just delete it. > > I understand memory loss. I don't have as much problem with short term > memory loss as I used to but occasionally it still hits me and hits me > big-time. Mine is from the pain meds. Although I have FMS I've not > experienced the fibro fog that many with FMS have. Or maybe I'm so out of > it I never notice! ;-) > > Moral support from family members: I'm very blessed, I have a wonderfully > supportive hubby, incredible really, and the rest of my family has never > indicated that they don't understand nor have they ever expected anything of > me that I'm not able to do. They accept when I say NO when they'd like to > hear yes. About the only problem I used to have, it seems to have subsided, > is when they want to talk about my spine injury and surgery and the > consequences of it but then they get this look in their eye and change the > subject after a few minutes. I learned that this is their fear of my > pain... they think, " OHmyGAWD, this could happen to ME!!! " and it scares > them good. My brother used to want to talk about the medications I take but > he doesn't anymore when I told him, after hearing him tell me the evils of > all things...the diazepam I take for spasms (nevermind the narcotics I > take), that I have a doctor who I trust and if he wanted to discuss my > medications with her I would give him permission. He never talked about it > again. > > Probably the worst family member I have is my sister. She has a huge amount > of problems of her own (she abuses alcohol) and also works in a pharmacy as > a tech. Thus she thinks she knows everything about everything when it comes > to medication and illness and never hesitated to lecture me or 'inform' me. > This problem ceased when I told her, about a year ago now, that I couldn't > continue letting her call me or email me when she was drinking because her > behavior at those times was abusive and I couldn't deal with it anymore. > She now will not talk to me at all. > So the lecture and inform problem has gone away also. > > I used to have a mother-in-law (I was married before and the injury/surgery > happened a year after I was married to him) that was like your Mom, thought > only wimps took pills and only wimps had pain and I wasn't REALLY in that > much pain, now was I?? Among her other attributes (not necessarily good > ones) she was a snoop and before I had the surgery ... I had surgery 2 > months after the injury... she went through my things when we were at their > house and she found the bottle of pain killers. I was EXTREMELY annoyed (to > put it mildly) when I found out and my ex really laid into her about it. > Thankfully I haven't had to deal with her in 6 yrs. > > I know this is easy for me to say but perhaps what you need to do is to tell > you Mom and Dad that you can NOT do these things for them AT ALL, especially > if they think you have to do them 1-2-3 !! Also perhaps you can start not > discussing your health situation at all with them since they are not > supportive in any way. I have a friend who is a psychologist tell me once > that when you are dealing with or facing a difficult time or decision you > should, if at all possible, surround yourself with people who are > supportive, non-judgmental, and discreet. And move away from, or change the > relationship, with those who just are not able to be supportive, > non-judgmental and discreet. I know this is your family but you do have to > think of yourself also. Good luck! > > CULater, > Ruthie > =========================== > Ruthie Cunliffe K2ZQ > ruthie@... > http://www.cunliffegroup.com/ruthie/ > Oh, no! Not ANOTHER learning experience! > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 1998 Report Share Posted September 29, 1998 Diane, Whew! what a mess you have gone through. Leaves even me rather speechless. But you also show great strength. According to studies, although it is different for many on our list, families of people with chronic pain tend to fall away. Of course yours appeared headed for self-destruct without you own problems. Am glad that you still have enough trust to find good friends. When a lot younger, I also made the decision to take the " living on the streets " option. Had I not, I probably would have killed one of my family members or myself.. That allowed me to feel in control of my life, and put " family " issues far enough away. These things do strengthen people, and even help them to cope with adversity. But I wish it had been better for you, and you didn't need to develop strength just that way. Ken At 06:37 PM 9/28/98 -0400, you wrote: > > >Ruthie, >Boy girl, you said a mouthful that time! Boy Howdy! Can I relate! I had to >literally pick up and move away from my " family of origin " . Alcoholism, drug >abuse and codependency issues will eventually " eat your lunch " if you let it. >It is not easy to watch the ones you love destroy themselves and try to take >you >with them! Abandoning the " tribe " is one of the roughest things I had to do. >They had already abandoned me after I had to start saying " NO " to them. I >could >not take care of my own responsibilities any more, much less theirs. > >They had chosen the worst possible time of my life to do it. During this time, >my oldest son finally revealed to us that he was terminal with AIDS. I am >blessed that I was able to get him home to Ohio from California in order to >spend the last two months of his life with him. During this time, everyone >else >was off on a drunken rampage and madder than hell at me. Since I had been " the >prop " for most of my life, when it came to me being the one who needed some > " propping " ...guess what? Right, none of them were able. Except for my one >blessed sister who took time away from her nursing job and drove a 1000 >miles to >be with me during his funeral. During this time I had been in a shelter for >victims of domestic violence, as well as a homeless shelter (two doors from a > " crack house " ) for ten days. The choices were limited. > >My back curled up into a question mark, and I could barely walk. My immune >system hit the floor. I was eating Soma (muscle relaxers) to try to kill some >of the emotional pain. I >got so toxic, I got the thrush in my mouth so bad I could hardly swallow. I >was >literally >choking on the pain, and could have easily let go and died with my son. > >I took a leap of faith and with my window broken in my old '79 Chevy, I >packed a >bag and fled! I vowed that I would rather sleep under a bridge than put up >with >all that crap any longer. > >Two years later, I am still in some pain, but I have my own little apartment >and >my own little world; a few friends; some Angels among them...and peace of mind >and I continue to heal and grow. It can be done and sometimes is very >necessary. > >Like chemicals that are poison to us, there are toxic people. If they hurt to >be around, then get the hell away from them and stay away from them until they >decide to treat you with the respect and consideration that you deserve. It >works! Absence does make the heart grow fonder. If you allow people to use >you, they do not respect you, IMHO!! > >Forgot to mention, my cyber family! Don't ever mess with my cyber family, >especially the ones on this list and the MCS list. God bless and sustain each >and every one of you. > >Huff, pant, gasp...whew! Long winded today, eh?? >Love and PEACE to ALLLLL, >Diane > >Ruthie Cunliffe wrote: > >> >> >> Hi Roselynn, >> >> It's good that you were able to get your computer back and running, bad that >> it cost you so much :-( >> >> I don't pay much attention to grammar and spelling online. The only thing I >> find difficult to read is when someone posts a message and it contains NO >> punctuation, little capitalization, or any sort of breaks in the message! I >> honestly can not read it! It all blurs into one big jumble of letters and >> usually I give up trying to read it. If I've had a goodly amount of pain >> med in me or it's late in the day (which means I've taken a fair amount >> already) then I don't even look at the message, I just delete it. >> >> I understand memory loss. I don't have as much problem with short term >> memory loss as I used to but occasionally it still hits me and hits me >> big-time. Mine is from the pain meds. Although I have FMS I've not >> experienced the fibro fog that many with FMS have. Or maybe I'm so out of >> it I never notice! ;-) >> >> Moral support from family members: I'm very blessed, I have a wonderfully >> supportive hubby, incredible really, and the rest of my family has never >> indicated that they don't understand nor have they ever expected anything of >> me that I'm not able to do. They accept when I say NO when they'd like to >> hear yes. About the only problem I used to have, it seems to have subsided, >> is when they want to talk about my spine injury and surgery and the >> consequences of it but then they get this look in their eye and change the >> subject after a few minutes. I learned that this is their fear of my >> pain... they think, " OHmyGAWD, this could happen to ME!!! " and it scares >> them good. My brother used to want to talk about the medications I take but >> he doesn't anymore when I told him, after hearing him tell me the evils of >> all things...the diazepam I take for spasms (nevermind the narcotics I >> take), that I have a doctor who I trust and if he wanted to discuss my >> medications with her I would give him permission. He never talked about it >> again. >> >> Probably the worst family member I have is my sister. She has a huge amount >> of problems of her own (she abuses alcohol) and also works in a pharmacy as >> a tech. Thus she thinks she knows everything about everything when it comes >> to medication and illness and never hesitated to lecture me or 'inform' me. >> This problem ceased when I told her, about a year ago now, that I couldn't >> continue letting her call me or email me when she was drinking because her >> behavior at those times was abusive and I couldn't deal with it anymore. >> She now will not talk to me at all. >> So the lecture and inform problem has gone away also. >> >> I used to have a mother-in-law (I was married before and the injury/surgery >> happened a year after I was married to him) that was like your Mom, thought >> only wimps took pills and only wimps had pain and I wasn't REALLY in that >> much pain, now was I?? Among her other attributes (not necessarily good >> ones) she was a snoop and before I had the surgery ... I had surgery 2 >> months after the injury... she went through my things when we were at their >> house and she found the bottle of pain killers. I was EXTREMELY annoyed (to >> put it mildly) when I found out and my ex really laid into her about it. >> Thankfully I haven't had to deal with her in 6 yrs. >> >> I know this is easy for me to say but perhaps what you need to do is to tell >> you Mom and Dad that you can NOT do these things for them AT ALL, especially >> if they think you have to do them 1-2-3 !! Also perhaps you can start not >> discussing your health situation at all with them since they are not >> supportive in any way. I have a friend who is a psychologist tell me once >> that when you are dealing with or facing a difficult time or decision you >> should, if at all possible, surround yourself with people who are >> supportive, non-judgmental, and discreet. And move away from, or change the >> relationship, with those who just are not able to be supportive, >> non-judgmental and discreet. I know this is your family but you do have to >> think of yourself also. Good luck! >> >> CULater, >> Ruthie >> =========================== >> Ruthie Cunliffe K2ZQ >> ruthie@... >> http://www.cunliffegroup.com/ruthie/ >> Oh, no! Not ANOTHER learning experience! >> >> ------------------------------------------------------------------------ >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 1998 Report Share Posted September 29, 1998 > > >Ruthie, >Boy girl, you said a mouthful that time! Boy Howdy! Can I relate! I had to >literally pick up and move away from my " family of origin " . Alcoholism, drug >abuse and codependency issues will eventually " eat your lunch " if you let it. >It is not easy to watch the ones you love destroy themselves and try to take you >with them! Abandoning the " tribe " is one of the roughest things I had to do. >They had already abandoned me after I had to start saying " NO " to them. I could >not take care of my own responsibilities any more, much less theirs. Diane, Good for you gal!! Boy, your strength is amazing, just amazing. And courage to see what the truth was and to see what you needed and go for it. The hardest part of the problem with my sister is that we have no alcoholism in our family or extended family so this was all rather new to me. Sure, I knew folks who were alcoholics and recovered alcoholics, and friends who had alcoholics in their family or married one, but when it hit MY family, wow, it was a toughie! I spent too many years ignoring her problem and dealing with all her crap that is associated to the drinking and the personality that goes with it. Thankfully we never lived closer than 40 miles apart in our adult lives, currently she lives about 90 miles away. Slowly but surely I was brought to my senses about what she was doing. When and I moved in together he put his foot down about the middle of the night drunken phone calls. Then he put it down about the late in the evening calls and pointed out to me that all these ever accomplished was me being very upset about everything and often worried sick about Nora and what she might do or not do. Finally it was made clear that any call after 9pm was forbidden, thank gawd for answering machines. Of course, about that time she got email and emails time stamped after 9pm were full of her crap...and the later they were the worse they were. I finally quit even opening any email that was time stamped late in the evening. She'd fallen into a habit, after having her little boy, of drinking after he went to bed. Her hubby comes from a family of alcoholics, his Dad died from it and his oldest brother wound up in jail 'cuz of it, but I actually think he drinks much less than she does now that they have a little one. My nephew is almost 6 and is as smart as a whip, incredibly so not just a biased Aunt talking, and it saddens me to see what is going on in his life. She's good at hiding most of this from the family except for me although my sister-in-law, who had no clue about the alcohol nor did my brother, did see Nora mildly physically abuse him and grossly verbally abuse him, which explained why he talked filthy to their now 11 year old son when visiting them. The older nephew didn't know what to say and just came in the house but my sis-in-law heard the whole exchange as did the neighbor kids. ::SIGH:: If I've one sad part to all this is that I no longer have any contact with my nephew on a regular basis and I have concern about his home environment, as does my brother and sis-in-law. But I could no longer deal with any of this and although I wasn't out to sever completely the ties I had with her I did want to let her know that I felt she was abusing alcohol and it was affecting our relationship. Once her dirty little secret was out she stopped talking to me completely. I'm told this is not unusual. Also, good for you for learning to say NO when you have to! I can't stress enough how important that is to folks who live with chronic pain and illnesses. Some family members understand, sooner or later, and some never, ever will. If they abuse you for saying NO then you have to extract yourself from that situation if at all possible. It sure sounds like you're a lot happier overall now and I'm really impressed that you were able to do what you needed to do for yourself. If we don't take care of ourselves then we're never going to be able to be there for ANYONE else. I know it's not easy to learn to say NO and we're never going to be always be able to when we should but at least realizing that we must do that at times sets us on a road to learning to take care of ourselves and how important that is to not only ourselves but to those around us. CULater! Ruthie =========================== Ruthie Cunliffe K2ZQ ruthie@... http://www.cunliffegroup.com/ruthie/ Oh, no! Not ANOTHER learning experience! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 1998 Report Share Posted September 30, 1998 I remember years ago before I was dx'd with the fibro. I had just quit a job, doctor's orders. I went to my church for assistance, (they are supposed to do that) They told me to move home. I told them that I could not do that, it would be a fate worse than death. (this is a church that is very family oriented, parents can do no wrong) I felt the same way, someone would end up dead if I went home. Then to add insult to injury, the church leader offered me a job in his factory. i turned it down, I had just been told by my doc that physical work was out. Well the church leader told me that since I turned the job down I wasn't trying hard enough and therefore refused me assistance. ~››~››~››~››~›› Did you really live today or were you merely passing time?. ‹‹§‹‹§‹‹§‹‹§‹‹§‹‹§ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 1998 Report Share Posted October 1, 1998 , People who don't live with chronic pain just don't understand, they can't even comprehend or be sympathetic. They believe that the way they experience life is the same way everyone experiences life. About the only thing that seems to " open " them up to realizing that life is very different for some of us, is to contract a chronic disorder, be injured, or go through surgery. That man's solution for everything was to offer people he met in need a job at his factory. I admire that kind of response in some ways. In other ways it is very demeaning and condescending. A job isn't always the answer, especially if the person in question cannot do the work. It just goes to show you that the average person has no concept, and therefore no understanding, of a life of constant pain. I agree with someone who wrote the other day that they wish they could give such folks their pain for just five minutes. In desperation I once told someone it was like holding on to an electric fence and not being able to ever let go of the fence, then offered them the opportunity to drive out to a farm and experience the difference. They wouldn't go. Ray in Virginia ---------------------------------------------------- Reach me by ICQ. My ICQ# is 14278868 or, * Page me online through my Personal Communication Center: http://wwp.mirabilis.com/14278868 (go there and try it!) or, * Send me E-mail Express directly to my computer screen 14278868@... For downloading ICQ at http://www.icq.com/ Ray in Virginia Quote Link to comment Share on other sites More sharing options...
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