Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 When I stagger and stumble I casually say, "Hey, I'm not drunk; I have MS." But I'm not dating and don't really know how to deal with it in that situation. ----- Original Message ----- From: ssaakk123 low dose naltrexone Sent: Friday, August 20, 2004 6:38 PM Subject: [low dose naltrexone] 'Disclosure of MS' I agree with what has been said...Audrey, ...Thing is, what do you think about telling someone you're dating about having MS?? I'm thinking that if it's just a few dates, he doesn't have a right to know. But then again, why should I be lying. It's obvious something's not right. I can't walk without his arm!Ang > > > > > > ---------------------------------> > > Audrey,> > > I have read most of your posts and I think you> > are> > > on> > > the right track. I am> > > not a doctor and am basically self-taught. > > Most,> > > if> > > not all of my info> > > comes from my own reading and trial and error> > > during> > > the past 20 or so> > > years.> > > > > > Don't allow all this info to confuse you. It> > is> > > === message truncated === > > > > > > ___________________________________________________________ALL-NEW Messenger - all new features - even more fun! http://uk.messenger. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 I have no choice, I cant hide it - use wheelchair all day - picked up more dates since being in this chair than before using it - go figure. lol. As for work? If i didnt have a disability, I wouldnt be employed as they are a disability organisation founded by quadriplegics and we have a major contract data entry work with the roads and traffic authority - their equal opportunity policy etc is what gave me the job. Its almost a case of reverse roles as if we see an able bodied person get a job with us, we question it, lol.........but we accept them just the same......they deserve a chance too I suppose - must be fair. Friday > When I stagger and stumble I casually say, " Hey, I'm not drunk; I have MS. " But I'm not dating and don't really know how to deal with it in that situation. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 The point is that you and I are both apparently very comfortable sharing this information about ourselves with many others. If I am not comfortable, I don't share the info. The people you are close to, and who feel concern for your condition, are going to know something is going on and telling them will be a natural consequence of your interactions with them. But very few of the many people in your life should be considered as having the RIGHT to know. Some women share the news of a pregnancy immediately, some wait a few weeks. Some share the sadness of an early miscarriage with their friends, others do not. Personal preference, personal needs. Same applies to MS, or any other medical issues. I find that by letting my friends know what is going on I can laugh with them about some of the stupid things. Like last Sunday when I was sitting on a large rock in my backyard talking with some friends. I leaned forward to get up and ended up sitting back down. Three times. They wanted to know if I was practicing to be a jack-in-the-box. I said it was an MS trick, beyond their abilities, we laughed, and I finally got up. No big deal, a little funny, could have been frustrating. In another situation with another group of people I would not have said the same thing. Instead I would have commented that perhaps my break wasn't over yet, or pointed out the invisible rubber band tying me to the rock, or some other non-MS silliness. Everyone has different needs here. The bottom line is accepting that MS is a part of our lives, yet does not diminish our value as people. If someone who discovers you have MS believes that it does they have revealed to you how small and uncaring they are. Their problem; not yours. OK, I'll shut up now. Here's hoping for a great weekend for all of us! ----- Original Message ----- From: LarryGC low dose naltrexone Cc: MSWatchers Sent: Friday, August 20, 2004 8:45 PM Subject: [low dose naltrexone] 'Disclosure of MS' My family members all know what I've been going through all these years. WHY was unknown, so there were no known answers as to what I was going through. I kept my family posted when I was going to a neuro following my 3/02 attack. After all I went through, how could I NOT tell them it was MS once I found out? They were all concerned. I couldn't keep it secret at work either. I didn't take an ad out in the paper, but those who knew what I was going through knew what my tests results were. Why not? It SHUT them all up. Everything they criticized me about apparently had more to do with MS than my own preferences. Having been through hell quite often over the years, and now being on LDN, I don't keep it much of a secret. I'm quite thrilled that LDN has given me a life back. But everyone has to make their own choices who and how much to tell. Sometimes it can help, sometimes it can hurt... just never know which until it's too late. ----- Original Message ----- From: low dose naltrexone Sent: Friday, August 20, 2004 16:00 Subject: Re: [low dose naltrexone] Tom / 'Disclosure of MS' You have no obligation to tell anyone you have MS, particularly family members... Your medical condition, health, etc, are private information you should share only with those you feel very comfortable with. If your health begins to affect your performance at work you may need to explain the problem, but not all employers are understanding. That can be a tough issue - do I tell my boss or not? But the family and friends thing is entirely your choice. I tend to tell all, keep no secrets, wear my heart on my sleeve. But only with people I am comfortable with and trust. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Excellent commentary Then there are those who know because of all the gossip behind your back. Not to mention the 'concerned' family members who go around telling everyone. My mom was more like a "don't tell, don't tell" person, apparently. Just before her open heart, her last request was that people would donate to the MS society or American Heart Association. When people came to visit after the services, I was talking with some people I knew and I mentioned my MS. They didn't know. When I told them I had it, they said they were wondering WHY my mom mentioned the MS society... apparently she never told them. Yep, all about choice... we decide who and what to say as we go. ----- Original Message ----- From: low dose naltrexone Sent: Saturday, August 21, 2004 00:10 Subject: Re: [low dose naltrexone] 'Disclosure of MS' The point is that you and I are both apparently very comfortable sharing this information about ourselves with many others. If I am not comfortable, I don't share the info. The people you are close to, and who feel concern for your condition, are going to know something is going on and telling them will be a natural consequence of your interactions with them. But very few of the many people in your life should be considered as having the RIGHT to know. Some women share the news of a pregnancy immediately, some wait a few weeks. Some share the sadness of an early miscarriage with their friends, others do not. Personal preference, personal needs. Same applies to MS, or any other medical issues. I find that by letting my friends know what is going on I can laugh with them about some of the stupid things. Like last Sunday when I was sitting on a large rock in my backyard talking with some friends. I leaned forward to get up and ended up sitting back down. Three times. They wanted to know if I was practicing to be a jack-in-the-box. I said it was an MS trick, beyond their abilities, we laughed, and I finally got up. No big deal, a little funny, could have been frustrating. In another situation with another group of people I would not have said the same thing. Instead I would have commented that perhaps my break wasn't over yet, or pointed out the invisible rubber band tying me to the rock, or some other non-MS silliness. Everyone has different needs here. The bottom line is accepting that MS is a part of our lives, yet does not diminish our value as people. If someone who discovers you have MS believes that it does they have revealed to you how small and uncaring they are. Their problem; not yours. OK, I'll shut up now. Here's hoping for a great weekend for all of us! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 BEFORE my son was diagnosed at age 13, at the first mention of MS, someone took it upon themselves to announce it at the Sunday ceremony at the largest church in the small town we live in, and place it in the Sunday bulletin, as well as sending out a mass email to the congregation. (Not our church...) They didn't announce that he was sick with a questionable diagnosis, they announced he had MS. I have never been so angry in my life. Being a teenager is difficult enough these days, and I truly felt we should have been the one's to make the decision, when and if we ever had a diagnosis. This " leak " came from my son's father, telling a close friend that there was a possiblity it was MS. Our " choices " were taken right out of our hands, but not without me letting the person inside the church who was responsible know exactly what I thought. There was a retraction printed immediately since we truly had no diagnosis at that time, but the damage was done. I don't know what we would have done if we had a choice, but I do know it would have been my son's decision, SHOULD have been my son's decision! Hope everyone has a great weekend! Kim > I agree with what has been said...Audrey, ... > > Thing is, what do you think about telling someone you're dating > about having MS?? I'm thinking that if it's just a few dates, he > doesn't have a right to know. But then again, why should I be lying. > It's obvious something's not right. I can't walk without his arm! > Ang > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Kim, i'm still sitting here with my mouth open in shock, disgust, outrage and disbelief - what kind of fool would think this announcement was their's to make? Shame on them. Im sorry you had to endure that. I'm flabber-gasted!!!. Friday > BEFORE my son was diagnosed at age 13, at the first mention of MS, > someone took it upon themselves to announce it at the Sunday ceremony > at the largest church in the small town we live in, and place it in > the Sunday bulletin, as well as sending out a mass email to the > congregation. (Not our church...) They didn't announce that he was > sick with a questionable diagnosis, they announced he had MS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Ditto. I wrote a response immediately on reading Kim's post, then deleted it because I was afraid it would damage everyone's monitors with the level of anger and disgust it contained. What in the world is wrong with people???? JT ----- Original Message ----- From: Friday low dose naltrexone Sent: Saturday, August 21, 2004 9:03 AM Subject: [low dose naltrexone] Re: 'Disclosure of MS' Kim, i'm still sitting here with my mouth open in shock, disgust, outrage and disbelief - what kind of fool would think this announcement was their's to make? Shame on them. Im sorry you had to endure that. I'm flabber-gasted!!!.Friday> BEFORE my son was diagnosed at age 13, at the first mention of MS, > someone took it upon themselves to announce it at the Sunday ceremony > at the largest church in the small town we live in, and place it in > the Sunday bulletin, as well as sending out a mass email to the > congregation. (Not our church...) They didn't announce that he was > sick with a questionable diagnosis, they announced he had MS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Anger is too mild of a word. Years back when I was still walking-waddling with sticks..in 80ties, I have seen on CNN " NEWS " that diseases like MS are orphan diseases……………meaning it is of no interest to the Pharmaceutical and Research people to find any cure for MS…because they have to put into it more money than they can get out of it. Only people like Reeves, and other actors/actresses or people who can move mountain are our only hope…………… *Zora* San Trinidad West Indies *** > Ditto. I wrote a response immediately on reading Kim's post, then deleted it because I was afraid it would damage everyone's monitors with the level of anger and disgust it contained. What in the world is wrong with people???? > > JT > ----- Original Message ----- > From: Friday > low dose naltrexone > Sent: Saturday, August 21, 2004 9:03 AM > Subject: [low dose naltrexone] Re: 'Disclosure of MS' > > > Kim, i'm still sitting here with my mouth open in shock, disgust, > outrage and disbelief - what kind of fool would think this > announcement was their's to make? Shame on them. Im sorry you had to > endure that. I'm flabber-gasted!!!. > > Friday > Quote Link to comment Share on other sites More sharing options...
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