HONOR ROLL - SECOND PART
0___10___20____30____40___50____60___70___80____90___100
.........!.........!..........!.........!.........!.........!.........!.........!.........!.........!
The 100th and no longer counting!!! >>>>>>>>>>>>>>>>>>>>>
51. ALABAMA GEORGE
52. ALLISON
53. AMY
54. B642434
55. BBENDER
56. BETTIE
57. BONNY
58. BRADY
59. BRIAN
60. CINDY
61. DANAHUNT
62. DOROTHY
63. ELFRIEDA
64. ENID
65. FITZCAT
66. IPSI_DIXIT
67. HELENSTAN
68. HORST
69. JANICE
70. JAYNE
71. JESSIEMACMILLAN
72. JOAN
73. JOYCE
74. JUMPYOWL
75. KANIE
76. JWROURKE
77. KATHELEEN
78. KBRUNER
79. LJEANT
80. LYNNE
81. MARJORIE
82. MIKE
83. MRS
84. PAT-P
85. RACHELLE
86. PAULA2003
87. RAVERNE
88. SABRINA
89. SARDSY75
90. SHERRLS
91. SHERRY
92. SJB
93. SJSMITH
94. SUGBRENDAS
95. SUZANNE
96. TACJD
97. VERA
98. VERNE
99. VIRGINIA
100. Xsn10s
There is a reason to my listing handles. If someone has sent one in and he/she is not on the list, please complain!!!
PLEASE READ-PLEASE READ-PLEASE READ
We're gonna get there Jan, don't you worry!!!
Butt-in by all means Jan!
We're sooooo close!
I will let you all know though that after sending out my mass "HELP PLEASE" email to all the RLS Support Group Leaders that I've had a number of the leaders contact me to say that they have distributed copies to their group members and then once completed, will collect them all and send them on to our dear Jumpy. They are also still trickling in slowly to both Jumpy and I via email.
So, we will certainly reach our goal of 100 and then some!!
By the way, just to clear up any confusion over where I got the entire list of RLS-SGL's from - they're ALL listed (names, emails, websites & phone-numbers) in the Quarterly Nightwalkers Newsletter which is sent out to all Registered Foundation Members (including me!).
For those who are not a member of the Foundation, then it is a very small price to pay to help such a wonderful cause!
We're sooooo close!
I will let you all know though that after sending out my mass "HELP PLEASE" email to all the RLS Support Group Leaders that I've had a number of the leaders contact me to say that they have distributed copies to their group members and then once completed, will collect them all and send them on to our dear Jumpy. They are also still trickling in slowly to both Jumpy and I via email.
So, we will certainly reach our goal of 100 and then some!!
By the way, just to clear up any confusion over where I got the entire list of RLS-SGL's from - they're ALL listed (names, emails, websites & phone-numbers) in the Quarterly Nightwalkers Newsletter which is sent out to all Registered Foundation Members (including me!).
For those who are not a member of the Foundation, then it is a very small price to pay to help such a wonderful cause!
Last edited by sardsy75 on Thu Sep 23, 2004 11:35 pm, edited 1 time in total.
Nadia
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!
THE HEROINE
Nadia, it was a fantastic amount of work you did while not in the best shape and in a record amount of time.
And you are right, we shall exceed the 100 mark!
You know, Jan, that without you butt-in-ers, the boat would not proceed.
BITS AND PIECES
During the previous night I became a grandfather. Avery Holly Cunningham. Almost seven pounds, 19". She was born in Raleigh, NC
Occasionally, I receive a cover mail which is heart-breaking. Let me quote from one of them written by Facilitator of an RLS Support Group from the Deep South. She must be a gracious Southern Lady from the Antebellum era (but only slightly older than myself). I think she deserves a separate post.
And you are right, we shall exceed the 100 mark!
You know, Jan, that without you butt-in-ers, the boat would not proceed.
BITS AND PIECES
During the previous night I became a grandfather. Avery Holly Cunningham. Almost seven pounds, 19". She was born in Raleigh, NC
Occasionally, I receive a cover mail which is heart-breaking. Let me quote from one of them written by Facilitator of an RLS Support Group from the Deep South. She must be a gracious Southern Lady from the Antebellum era (but only slightly older than myself). I think she deserves a separate post.
Jumpy Owl
EXCERPTS FROM A LETTER
Dear Dr. Holly:
"... I have led my support group since 1995 so I have heard a million stories and the following is based on this information or on my own personal experiences."
(She invited a masseuse to the group meeting to see whether deep massage is helpful). "...BUT the upshot was that deep massage works if you are fortunate to have a masseuse there during the attack of RLS but routine daytime massage would be of little benefit at night."
"During sharing each person told what drugs they were taking for their RLS, and collectively, there were enough potent drugs to kill an elephant yet NO ONE PERSON THERE was in what I call a reasonable control. Everyone there was struggling to find something so they could have a reasonably normal nights sleep and I personally think there is no such things with the drugs available at this time."
"During an RLS Conference I posed the question of WHY under the circumstances nobody was in reasonable control and the doctor's answer was "because they were taking SINEMET." When I told him that nobody in that group was taking SINEMET. he had no answer but a Ph.D. researcher present admitted "the fact is that they just did not know why."
She did another experiment which proved the existence of denial. Then she also told her own story which spoke of 14 years of intense suffering with snatches of sleep in 12 to 18 minutes of increments - after a mild start possibly triggered by caffeine addiction.
And she closed by wishing us good luck in such a gracious way that I had trouble withholding my tears.
"... I have led my support group since 1995 so I have heard a million stories and the following is based on this information or on my own personal experiences."
(She invited a masseuse to the group meeting to see whether deep massage is helpful). "...BUT the upshot was that deep massage works if you are fortunate to have a masseuse there during the attack of RLS but routine daytime massage would be of little benefit at night."
"During sharing each person told what drugs they were taking for their RLS, and collectively, there were enough potent drugs to kill an elephant yet NO ONE PERSON THERE was in what I call a reasonable control. Everyone there was struggling to find something so they could have a reasonably normal nights sleep and I personally think there is no such things with the drugs available at this time."
"During an RLS Conference I posed the question of WHY under the circumstances nobody was in reasonable control and the doctor's answer was "because they were taking SINEMET." When I told him that nobody in that group was taking SINEMET. he had no answer but a Ph.D. researcher present admitted "the fact is that they just did not know why."
She did another experiment which proved the existence of denial. Then she also told her own story which spoke of 14 years of intense suffering with snatches of sleep in 12 to 18 minutes of increments - after a mild start possibly triggered by caffeine addiction.
And she closed by wishing us good luck in such a gracious way that I had trouble withholding my tears.
Last edited by jumpyowl on Fri Sep 24, 2004 4:19 pm, edited 1 time in total.
Jumpy Owl
Congratulations Grandpa Jumpy
Hi Jumpy, it's Jan
Congrats Grandpa! I'm so happy for you and your familiy.
Jan
Congrats Grandpa! I'm so happy for you and your familiy.
Jan
No one is alone who had friends.
Congratulations, Grandpa Jumpy! Hope everyone's healthy!
Had a quick question about your quote and paraphrase from the Southern Lady. The experiment about denial??? Whose denial... under what circumstances... etc.
Perhaps this is something you folks have discussed before, but it sounded interesting... I just couldn't place the reference in any context. Is there more to the story?
I'm so glad that the questionnaires are still coming in. I still have a few out there that I'm hoping will get filled out eventually. A LOT of people have said, though, "I don't think I have enough information to fill this out effectively." I've ASSURED them that they do, but not sure how many really believe me or will take the time.
Have a good evening.
Sara
Had a quick question about your quote and paraphrase from the Southern Lady. The experiment about denial??? Whose denial... under what circumstances... etc.
Perhaps this is something you folks have discussed before, but it sounded interesting... I just couldn't place the reference in any context. Is there more to the story?
I'm so glad that the questionnaires are still coming in. I still have a few out there that I'm hoping will get filled out eventually. A LOT of people have said, though, "I don't think I have enough information to fill this out effectively." I've ASSURED them that they do, but not sure how many really believe me or will take the time.
Have a good evening.
Sara
Thanks Jan and Sara!
I guess it is a common occurrence but not quite when it is happening to oneself. 
And I have been waiting for this occasion so long, it seems.
Sara, I guess I have to do some more typing (sigh).
It is interesting (and I guess her more personal relation to her own group had something to do with it):
"I explained to my group that I was mildly compulsive to the extent that at night I sometimes could not sleep until I got up and re-checked to make sure the doors were locked, knowing that I had already checked them. I asked them if they would mind saying whether they were compulsive to any degree and gave them the option of not answering. Every person answered the question and without exception every one of them had some compulsions, we did not dvelve any deeper than that.
As a follow-up to this experiment I posed the same question to the support group leaders listserve and a cyberspace support group with completely different result. Few, if any, admitted to being compulsive. So, where I felt there could be a connection, they shot it down, unless they were not being honest since it is such a personal issue."
And I have been waiting for this occasion so long, it seems.
Sara, I guess I have to do some more typing (sigh).
It is interesting (and I guess her more personal relation to her own group had something to do with it):
"I explained to my group that I was mildly compulsive to the extent that at night I sometimes could not sleep until I got up and re-checked to make sure the doors were locked, knowing that I had already checked them. I asked them if they would mind saying whether they were compulsive to any degree and gave them the option of not answering. Every person answered the question and without exception every one of them had some compulsions, we did not dvelve any deeper than that.
As a follow-up to this experiment I posed the same question to the support group leaders listserve and a cyberspace support group with completely different result. Few, if any, admitted to being compulsive. So, where I felt there could be a connection, they shot it down, unless they were not being honest since it is such a personal issue."
Jumpy Owl
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sugbrendas
- Posts: 234
- Joined: Thu Aug 05, 2004 7:28 pm
- Location: Balto.
- Contact:
Congrats Grandpa!!! My little grandson has been such a blessing,we love him to pieces.He loves his "Op".(Pop)He talks to him every day when my husband calls me.I watch him and it's so cute he grabs the phone and walks and talks.He's 17 months now.
I'm a lttle fuzzy on the sinnamet issue,why it doesn't work and if it doesn't then why do they keep using it.
It didn't help me any just made my hands shake.
I certianly will admit to at one time being compulsive.I believe after you've gone an extensive time withoutout sleep and your mind goes into that fog you may get overly worried you left the doors unlocked and stove on.I would check several times a night..I wasn't sleeping and I knew I wasn't that on top of things so I just kept checking.
Once I got used to the mind fog that comes with this I developed a routine,as I was closing the house for the night I would make my way to the kitchen turning everything off,checking burners,locking doors.On my way back through I would look to see if it was done..Using this helped me to not take any worries to bed..The process took a couple of years.
So yeah,I admit it and I keep a calander with me always and write in the blocks,appts etc.
I'm a lttle fuzzy on the sinnamet issue,why it doesn't work and if it doesn't then why do they keep using it.
It didn't help me any just made my hands shake.
I certianly will admit to at one time being compulsive.I believe after you've gone an extensive time withoutout sleep and your mind goes into that fog you may get overly worried you left the doors unlocked and stove on.I would check several times a night..I wasn't sleeping and I knew I wasn't that on top of things so I just kept checking.
Once I got used to the mind fog that comes with this I developed a routine,as I was closing the house for the night I would make my way to the kitchen turning everything off,checking burners,locking doors.On my way back through I would look to see if it was done..Using this helped me to not take any worries to bed..The process took a couple of years.
So yeah,I admit it and I keep a calander with me always and write in the blocks,appts etc.
Finally able to sleep on average 9 hours a night!
Brenda
Brenda
Compulsive--Me? Well.........
It's Jan....Coming out.....
Okay, okay, I have to admit it, I'm Jan, and I'm compulsive.
I've never admitted this before, but, I do something. I don't check doors to see if they are locked. I don't wash my hands over and over. What I do is something pretty odd and people will probably get a chuckle over, but here goes. I don't have any idea WHY I do this, but I have a constant need to check my messages on my answering machine when I am not home, whether I am expecting a call or not. Isn't that the oddest thing you've ever heard? I HAVE to do it. I'm sure most answering machines have a remote way that you can retrieve your phone messages and that's what I do, wherever I am--I even did it when we were in Jamaica last summer. I'm sick!!!!! My husband think's I'm nuts!! Ha!! I'm really not compulsive-obsessive in any other way, except for that one thing. How odd!!!!!
Jan
Okay, okay, I have to admit it, I'm Jan, and I'm compulsive.
I've never admitted this before, but, I do something. I don't check doors to see if they are locked. I don't wash my hands over and over. What I do is something pretty odd and people will probably get a chuckle over, but here goes. I don't have any idea WHY I do this, but I have a constant need to check my messages on my answering machine when I am not home, whether I am expecting a call or not. Isn't that the oddest thing you've ever heard? I HAVE to do it. I'm sure most answering machines have a remote way that you can retrieve your phone messages and that's what I do, wherever I am--I even did it when we were in Jamaica last summer. I'm sick!!!!! My husband think's I'm nuts!! Ha!! I'm really not compulsive-obsessive in any other way, except for that one thing. How odd!!!!!
Jan
No one is alone who had friends.
-
sugbrendas
- Posts: 234
- Joined: Thu Aug 05, 2004 7:28 pm
- Location: Balto.
- Contact:
Hi Jan,no you're not nuts!!Please everyone RLS and sleep deprivation is not a mental illness.(Sometimes my dh may disagree) 
.
I'm very active AGAIN at night,he's very afraid..It's cause i'm off of that routine for my study,headache's back in full force.
Ok,I used to do laundry late at night so that I could watch the washer go back and forth when I couldn't sleep,I think it's the repetitive action.Now if thats not silly I don't know what is! Hours at a time my friends!
My dh and I still laugh over that one,he makes fun of me and will say "remember when you used to watch the washer all night?" and he would say it in front of friends and family.I laugh right with them cause it's obsurd!
If these behaviors leave after a few weeks of really good sleep,you're fine..I stopped alot of that stuff..I used to think about EVERYTHING all night..I think I got over that by writting things down that had to be done and somehow doing it.
So Jan if you're nuts i'm certafiable! ((HUGS))
.
I'm very active AGAIN at night,he's very afraid..It's cause i'm off of that routine for my study,headache's back in full force.
Ok,I used to do laundry late at night so that I could watch the washer go back and forth when I couldn't sleep,I think it's the repetitive action.Now if thats not silly I don't know what is! Hours at a time my friends!
My dh and I still laugh over that one,he makes fun of me and will say "remember when you used to watch the washer all night?" and he would say it in front of friends and family.I laugh right with them cause it's obsurd!
If these behaviors leave after a few weeks of really good sleep,you're fine..I stopped alot of that stuff..I used to think about EVERYTHING all night..I think I got over that by writting things down that had to be done and somehow doing it.
So Jan if you're nuts i'm certafiable! ((HUGS))
Finally able to sleep on average 9 hours a night!
Brenda
Brenda
Certifiable? Maybe we can get a double room!!!
Hi Sug, it's Jan
I never thought of watching the washer! Sounds like fun! Ha! You know, come to think of it, I used to lie awake at night prioritizing my "worry list". Ha! No kidding! I've overcome that one, too! But, I don't think I can give up the phone message thing (not that I'm so important I have THAT many messages on my machine). At least I'm not like that woman on the T.V. commercial who is always dusting someone else's house (have you seen that commercial?). I'm lucky if I dust my OWN house anymore! LOL
Jan
I never thought of watching the washer! Sounds like fun! Ha! You know, come to think of it, I used to lie awake at night prioritizing my "worry list". Ha! No kidding! I've overcome that one, too! But, I don't think I can give up the phone message thing (not that I'm so important I have THAT many messages on my machine). At least I'm not like that woman on the T.V. commercial who is always dusting someone else's house (have you seen that commercial?). I'm lucky if I dust my OWN house anymore! LOL
Jan
No one is alone who had friends.
********HONOR ROLL - THIRD PART (>100)********
0___10___20____30____40___50____60___70___80____90__100_
.........!.........!..........!.........!.........!.........!.........!.........!.........!.........!.......
The 107th and no longer holding breath >>>>>>>>>>>>>>>>>>>>
101. DDAVP
102. EDITH-H
103. IRA
104. JOYCE-O
105. MRA
106. POOHBEAR
107. THINKER
0___10___20____30____40___50____60___70___80____90__100_
.........!.........!..........!.........!.........!.........!.........!.........!.........!.........!.......
The 107th and no longer holding breath
>>>>>>>>>>>>>>>>>>>>
101. DDAVP
102. EDITH-H
103. IRA
104. JOYCE-O
105. MRA
106. POOHBEAR
107. THINKER
Last edited by jumpyowl on Mon Sep 27, 2004 10:35 pm, edited 3 times in total.
Jumpy Owl
Hooray, Jumpy!!! How wonderful!!
I just sent questionnaires out to an old friend and her sister who have RLS. My friend said that she'd be THRILLED to share her hard-earned wisdom with you re: RLS. She's had it a long time and quite severely. Also, she's been treated in Europe, so the medications she mentioned all sounded different than what folks are prescribed here. I think that could be interesting.
Oh, and Lynne, if you read this later on, I sent her a PS asking for a quality of life statement, too. I HOPE she'll write one. She told me some stories about RLS in here life, and they're quite powerful. She's got a lot of grit and gumption and won't pull her punches. HOPE she'll come through!! <fingers crossed>
Take care everyone!
Sara
I just sent questionnaires out to an old friend and her sister who have RLS. My friend said that she'd be THRILLED to share her hard-earned wisdom with you re: RLS. She's had it a long time and quite severely. Also, she's been treated in Europe, so the medications she mentioned all sounded different than what folks are prescribed here. I think that could be interesting.
Oh, and Lynne, if you read this later on, I sent her a PS asking for a quality of life statement, too. I HOPE she'll write one. She told me some stories about RLS in here life, and they're quite powerful. She's got a lot of grit and gumption and won't pull her punches. HOPE she'll come through!! <fingers crossed>
Take care everyone!
Sara