Was wondering where Sally is


Posted by Billie Lowe , Feb 22,2002,22:02   Archive
Sally I haven't seen you post for a few days, and was wondering if you are okay? Maybe I just missed them, I enjoy reading what you write.

Billie in Kansas




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Re: Was wondering where Sally is

Re : Was wondering where Sally is --- Billie Lowe
Posted by kathy , Feb 23,2002,09:22 Top of Thread Archive
Yes, that is why i wanted her back here too. she seems to lighten things up a bit in her own way.

--modified by kathy at Sat, Feb 23, 2002, 09:23:04




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Re: I'm still around

Re : Was wondering where Sally is --- Billie Lowe
Posted by Sally - in - Idaho , Feb 23,2002,13:13 Top of Thread Archive
Thank you for your kind words and for missing me. It's nice to be noticed in a favorable way!

I've been "busy" keeping up with the figure skating in the Winter Olympics as that is one of the big enjoyments of my life. Trouble is, I usually fall asleep during the evening broadcaST and then have to catch up with it on tape during the day while my husband is away from the TV for a brief time! He is not a skating fan, nor am I a fan of his CNN & C-SPAN "latest on terrorism or politics." Still, we've managed to hang in there together for 48 years now.

I have checked in every couple of days to catch up on the postings and things appear to be going pretty well. It's good to see new people "talking" more.

I had an e-mail from Grace Anne and she is doing well, but can't read the BB very often. She is getting quite adept at Braille and I admire her for going ahead and getting prepared ... just in case.

Sally in drizzly North Idaho




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Re: I'm still around

Re : Re: I'm still around --- Sally - in - Idaho
Posted by Kathleen Bowers , Feb 23,2002,16:00 Top of Thread Archive
Just a new-comer and find it interesting to move around....Notice that you are in N. Idaho. My granddaughter is in Idaho Falls....She calls me "Gramie".....is that pretty common nickname for grandmother where you are located. . . from a darling 12-year old, I am well satisfied.

Secretary? ....education field...sounds interesting....my 20 yrs. were in the area of religion . BEB after retirement....BoTox does not correct my condition, just helps. Wondering if BoTox is known to lower the immune system....Anyone?

And thanks, Sally.
A new-comer, K.Bowers




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Re: WELCOME KATHLEEN

Re : Re: I'm still around --- Kathleen Bowers
Posted by June in Toronto (June Floyd,June in Toronto), Feb 23,2002,18:45 Top of Thread Archive
Welcome to the bb Kathleen but sorry to hear you have beb - how long have you had it for? I've had beb/meige for about 7 years now and, like you, botox helps, but doesn't correct the condition. I don't believe botox travels from the injected sites, so don't think it would lower the immune system. BUT, its the most powerful drug around and it isn't natural to have that injected into us, so I don't know. I take a lot of vitamins and try to have a good diet anyway.

I have an 11-year-old grandaughter - I can tell you enjoy yours even though she does live a way from you. Keep in touch with us all.Take care.

June in Toronto(beb/meige)




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Re: WELCOME KATHLEEN

Re : Re: WELCOME KATHLEEN --- June in Toronto
Posted by Kathleen Bowers , Feb 24,2002,17:11 Top of Thread Archive
You guys are great! It's good to get into a family of BEB friends.
You just don't know how much I do need you out there.
Right now I am feeling the loss of my first BEB friend. It was in the early nineties that I learned I was not the only one around with this eye condition. Louise Rampey, Easley SC, had her own shop styling hair when she was diagnosed with BEB. She had the local doctor to do the surgery and was back to base one in two weeks. Yes, we talked. Oh, it was something what she did for my frustration...I really wanted to die.

My friends's death came slowly. A number of complications.

It was only recently that I learned about MATTIE LOU KOSTER's death in October of last year. Being caregiver for my 90 yr. old Mother after her stroke, and then after her death, my husband died in '97. And I am just beginning to surface once again and needing to know what I can expect? Progressive? Throat? Find swallowing a little difficult occasionally. Pain / spasm moving from left side of head and going down into neck area. This happens most often when yawning. MRI shows brain very normal, ultra sound shows arteries normal for age. Nothing on what I can expect. "Well, what is the worse thing that could happen to me?" And the neurologist said, "The worse thing that could happen to you would be for you to give up."

Since before the holidays have suffered with "shingles" and phlebitis. Low immune system factor...vitamins (Plus) and etc, soy products, and very little exercise. Slowed down and revisiting medical journals....nervous system, the muscles, and looking seriously at everything I can find on the Website about BEB.

My first time to see the new drug now on trial...what do you know about that? Do you wear Dr. Anderson's (Utah) rose tinted glasses?

Sorry. I live alone. When apologizing for talking too much, it's because it helps keep my eyes open. As much as I like sharing with you, my struggle and effort is rather feeble.

My first thought was to come up with one of the latest jokes. Don't give up on me, I'll try to do better next time. Promise! ah aha.

Kathleen (Kitty) just north of Clemson University and west of Greenville... and just a skip and jump away from the beautiful Lake Keowee. But no snow....50-60 temp. Kitty




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Re: WELCOME KATHLEEN

Re : Re: WELCOME KATHLEEN --- Kathleen Bowers
Posted by June in Toronto (June Floyd,June in Toronto), Feb 24,2002,17:32 Top of Thread Archive
Thanks for telling us some of your story, Kitty/Kathleen - you have been through some difficult times and I'm glad to hear that, at least with some of them, you are slowly emerging. You may live alone but believe me, with this bb, you are not alone. We all care for each other during the bad times as well as the good. Yes, Mattie Lou's passing was very sad - what a great lady she was - and I'm sure your friend was also.

I like your doctor's answer "not to give up" - we have to try to live each day, or if, necessary each minute, or hour, to get by - to count our blessings and to pray for a cure for this disease (and all the others).

I haven't tried the FL41 tinted glasses - others have - most with great success I understand. As to posting a joke - I did that only once (a nice clean one about a parrot and a rotweiler) and it got taken off the bb, as one joke leads to another and before they know it the bb is taken over with jokes!

Myobloc is the new drug I believe you must be referring to - the FDA hasn't approved it yet in the U.S.A. (I believe) although a couple of beb patients have managed to try it. It isn't available here in Canada for beb'ers. I understand Myobloc is a thicker solution, a little more painful perhaps because of that, and for people who have built up immunity to Botox is worth a good try.

Nice `talking' to you Kitty. Take care

June in Toronto (beb/meige) who is so very excited that Canada won the gold medal in the men's hockey finals - the U.S. played SO VERY WELL, but please...be happy for us (we haven't won this in 50 years - and we don't win so many medals either)!




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Re: WELCOME KATHLEEN/kitty and June

Re : Re: WELCOME KATHLEEN --- June in Toronto
Posted by kathy , Feb 25,2002,09:34 Top of Thread Archive
welcome, Kitty and your neurologist's advice is excellent. I wear the fl41's, have them in both a lighter tint for indoors and the computer, and the darkest ones for outside.They help a great deal but sometimes even the light is too bright thru them. Last injection time i could go short periods of time without them and use my regular clear glasses. I hope i can do that this time. The light as it really is on colors is so beautiful sometimes.
Yes, june, the canadiens were great! But I think I think Lynn's joke was a much needed lightner upper at the time. I certainly needed it.



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Re: WELCOME KATHLEEN

Re : Re: WELCOME KATHLEEN --- June in Toronto
Posted by Kathleen Bowers , Feb 25,2002,11:41 Top of Thread Archive
June, my congratulations to you and your country! My flag goes up for you! Beautiful, the couple--Sarah in figure skating ?

I do appreciate you. First, I need to tell you my face is red. I rushed into this in a very feeble way. Did not know my notes were getting repeated...Read something now aboout delete mode. Sorry about that.

What I saw about the new drug is in the experimental stage....perhaps some 30 patients receiving injections in the eyelids.....photos show lids turn red....but so far eliminates BoTox for, I believe, one year. Now it seems the test is to reach for a cure with the drug. Does that make sense to you. Will go back and revisit that.

Thanks about the jokes. That makes sense to me.

Smiling now. It feels good. My daughter/husband will be coming your way in July with youth from the church. She has been in that direction before but it rained all the time...a sseminar for nurses.

Kitty


--modified by Kathleen Bowers at Mon, Feb 25, 2002, 11:43:29




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Re: WELCOME KATHLEEN

Re : Re: WELCOME KATHLEEN --- Kathleen Bowers
Posted by Kelly Saffell , Feb 25,2002,12:42 Top of Thread Archive
Are you talking about Doxil? It is a chemo-myectomy. I believe it actually kills the muscles when injected and takes about a year to complete. I haven't read much about it recently but read the earlier studies.



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Re: WELCOME KATHLEEN

Re : Re: WELCOME KATHLEEN --- Kathleen Bowers
Posted by June in Toronto (June Floyd,June in Toronto), Feb 25,2002,17:01 Top of Thread Archive
Hi Kitty, so is it Myobloc (used instead of Botox) that you are talking about or a new oral drug - I'm unsure?

You mentioned you were in `Religion' yourself in one post and your daughter seems involved (and a nurse) as she is coming to Toronto this summer with youth from the church. Would you mind telling us what you did before beb/retirement - don't if you feel uncomfortable, I'm just interested.

June in Toronto (beb/meige)




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Re: WELCOME KATHLEEN/Kitty

Re : Re: WELCOME KATHLEEN --- June in Toronto
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Feb 26,2002,07:09 Top of Thread Archive
Kitty, I can't seem to figure out what new drug you are talking about either.? i know that the dioxil is supposed to make your eyelids red or pink for awhile. i didn't think anyone here has had that treatment.



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Re: WELCOME KATHLEEN

Re : Re: WELCOME KATHLEEN --- Kathleen Bowers
Posted by Judith Donel , Feb 24,2002,18:51 Top of Thread Archive
Welcome Kathleen to the bb. About the tinted glasses, I have been wearing them for about 3yrs now. I had my perscription glasses sent to Utah and they did the tinting. I found they are not that great outside but are good inside. Makes it easier to read (when I am able). It only cost me about $18.00.

Judy in Ohio where we had a beautiful day, but expecting snow this week.




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Re: I'm still around

Re : Re: I'm still around --- Kathleen Bowers
Posted by Sally - in - Idaho , Feb 24,2002,15:27 Top of Thread Archive
Hi Kathleen ... Welcome!

I live southeast of Coeur d'Alene and Spokane. My grand-daughter's other side of the family reside in Idaho Falls. She calls me "Mama Sally" and that is what she came up with on her own when learning to talk. "Gramie" is sweet and special and to be cherished, along with the girl!

Botox is certainly no cure to me, either, but does make life tolerable because it controls the spasms. I don't take any other meds for BEB. Light is the worst culprint for me, and Botox does nothing to help that.

Where do you live?

Sally in bright sunny North Idaho where we had two inches of snow last night and it isn't up to freezing mark yet. Snow was otherwise nearly all gone.




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Re: I'm still around

Re : Re: I'm still around --- Sally - in - Idaho
Posted by Kathleen Bowers , Feb 25,2002,12:30 Top of Thread Archive
Sally, I need to get my US of A map out and revisit the northwest. Abbey likes the snow. My grand is doing well in school. We are hearing about the DARE program her class is participating in now. This program used here in the Carolinas, and well accepted.

Oh, have I already mentioned that I am a skip and a jump from the beautiful Lake Keowee, Clemson University close by and between Greenville/Spartanburg and Anderson, Atlanta...I come from NC where the mountains are outstanding in more ways than one. After my husband's father died, we came back home and the name on the mailbox stayed the same. With a daughter, two sons, Gordon and I found it exciting to come back to the homestead where we have enjoyed a strong togetherness of a big family....ONly three of the ten brothers and sisters are still living....but I have a devoted family and a bunch of loving neices and nephews...three grand-daughters and one grand son. I am truly blessed even if so much has gone from me.

In my letter of condolences to Mary Lou, I closed with "Let us celebrate a dream still flourishing. Let us celebrate our hope for a cure given us by Mattie Lou Oliver Koster." A cure will never be too late for someone. Kathleen (Kitty)




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Re: I'm still around

Re : Re: I'm still around --- Kathleen Bowers
Posted by Evelyn , Feb 24,2002,23:15 Top of Thread Archive
Hi Kathleen,
That's my mother-in-law's name too. I don't have BEB, but the moderator, Judy and I have been friends since fourth grade. I have many other medical problems, so I sympathize with all of you, and anyone who has a medical problem that can't be solved at this point.
I also have a sweet granddaughter, and she's ten. She calls me Mam-ma. She is the love of our life.
You mentioned soy products in one post. I became vegan just over a year ago. I thought it would help with my health after having a stroke that was precipitated by low blood sugar from my diabetic condition. I have been vegetarian for years anyway, so it wasn't as hard as it would have been if I had still been eating meat. I just made a delicious lemon pie, using tofu and a special packaged mix.
I wish you the best health possible.
Evelyn in Washington state...but on the opposite side of WA from Idaho where Sally lives.



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Re: I'm still around

Re : Re: I'm still around --- Evelyn
Posted by Kathleen Bowers , Feb 25,2002,12:04 Top of Thread Archive
Evelyn, you guys out there make me feel so special. I don't like being lonely. And your lemon pie with tofu sounds great. What kind of special packaged mix are you refering to? Have you tried the soy (peanut type) butter. Lately I've gotten stuck on cauiflower with soy cheese sauce. In the mirocwave with 2 Tbsp. water for 12 minutes (covered) gets it ready for the c. sauce.

THE CHALLENGE comes to me from Longview WA. In WIDOW'S MIGHT prayer requests Seattle has been listed this quarter. There's to be something like a Crossover ministry this year. Do you know about that?

Still smiling, Kitty Bowers




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Now where's Shirley

Re : Re: I'm still around --- Sally - in - Idaho
Posted by Joann Humphrey , Feb 23,2002,19:31 Top of Thread Archive
Sally glad you're back, now I'm wondering about Shirley. It's been a long time since we've heard from her.
Joann in Ark.



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Re: Now where's Shirley

Re : Now where's Shirley --- Joann Humphrey
Posted by Shirley-Arkansas-USA , Feb 23,2002,20:24 Top of Thread Archive
I just popped in to read a few posts and get away from the craziness around my place right now. My mom passed away a couple of days ago after an extended period of numerous health problems that progressively worsened. She finally just went to sleep about a week ago and never really awakened. She was 86 and she and my dad had been married for 57 years.

I'll get back to posting again when things settle down around here. I've let Alan and Virginia get away with way too much.
Everybody take care.

Shirley in Arkansas wishing for calmer days




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Re: Now where's Shirley

Re : Re: Now where's Shirley --- Shirley-Arkansas-USA
Posted by MaryNY , Feb 23,2002,20:47 Top of Thread Archive
Shirley - Sorry to hear about your Mom. My 88 yr. old mother is with me now. In reasonably good health...I can only hope that she someday passes away as easily, like her rwo sisters did. Losing your mother at any age has got to be hard, I'm lucky in that she's a super person. My deepest sympathy.....Mary



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Re: Now where's Shirley

Re : Re: Now where's Shirley --- Shirley-Arkansas-USA
Posted by Joanne Matuzas , Feb 24,2002,00:44 Top of Thread Archive
Shirley, my condolences about your Mom's passing. I still have mine and I know together with missing them, I hear losing a parent sheds a new reality on our own mortality. Hope your Dad is managing ok.

Take care and look forward to your future posts....Joanne M. San Diego, CA




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Re: Shirley's Sadness

Re : Re: Now where's Shirley --- Shirley-Arkansas-USA
Posted by June in Toronto (June Floyd,June in Toronto), Feb 24,2002,06:07 Top of Thread Archive
I'm so sorry to hear about the passing of your mother, Shirley - she is at peace now and for that you can be glad I'm sure. My mother lived for as long as your parents were married - 57 years. I was 2,000 miles away when she passed and I felt so guilty for such a long time. I know how much you did for your mother, so you can be comforted by that fact. Take care and come back `home' when you feel you can. Love

June in Toronto




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Re: Now where's Shirley

Re : Re: Now where's Shirley --- Shirley-Arkansas-USA
Posted by Joann Humphrey , Feb 24,2002,18:24 Top of Thread Archive
Shirley, I'm so sorry to hear about your mother. Thank goodness she didn't have to suffer. My own mother passed away when she was 65, (that's what I am now)& it's sad when they leave us. But the Good Lord knows best.
Joann



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Re: Now where's Shirley

Re : Re: Now where's Shirley --- Shirley-Arkansas-USA
Posted by Kelly Saffell , Feb 24,2002,19:00 Top of Thread Archive
I'm so sorry about your mother. My grandmother passed away in Jan on her 79th birthday. My grandparents had been married 57 years as well. I hope your dad is doing ok. Our thoughts and prayers are with you and your family.
Kelly



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Re: Now where's Shirley

Re : Re: Now where's Shirley --- Shirley-Arkansas-USA
Posted by Billie Lowe , Feb 24,2002,21:35 Top of Thread Archive
Shirley, I am so sorry to hear about your mother. Mothers are special people, & I know you will miss her very much. I will keep you and your family in my prayers.

Billie in Kansas




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Re: Now where's Shirley

Re : Re: Now where's Shirley --- Shirley-Arkansas-USA
Posted by Evelyn , Feb 24,2002,23:20 Top of Thread Archive
Hi Shirley,
So sorry to know about your mother's passing. Even when we expect it, losing family is never easy. I hope things will calm down for you soon.
Evelyn



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Re: Now where's Shirley

Re : Re: Now where's Shirley --- Shirley-Arkansas-USA
Posted by kathy , Feb 25,2002,09:43 Top of Thread Archive
I'm sorry , shirley. Joann is right.

--modified by kathy at Mon, Feb 25, 2002, 09:44:07




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Re: Now where's Shirley

Re : Re: Now where's Shirley --- Shirley-Arkansas-USA
Posted by Alan Phair , Feb 25,2002,13:25 Top of Thread Archive
Shirley, I am so sorry to hear about your mother. It has been a tough time for your the past months and we will all pray that things turn around for you. I thought something was wrong when you let me get away with a couple of things... God Bless and we will keep you in our prayers...Alan



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Re: Now where's Shirley

Re : Re: Now where's Shirley --- Shirley-Arkansas-USA
Posted by Tim Johnson-PA-USA , Feb 25,2002,19:36 Top of Thread Archive
Shirley, you have had a full plate for the past while, and now your mother has passed away. Martha and I send our sincere sympathy to you at this time. You are in our prayers. I'm wondering just how your eyes and everything are doing with all these things going on? Take care, and get some rest when you can. Will be looking forward to your regular postings again when you are able.

Tim in PA whose Botox is about 75% kicked in after 19 days.




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Re: Now where's Shirley

Re : Re: Now where's Shirley --- Shirley-Arkansas-USA
Posted by R Elias , Feb 25,2002,23:33 Top of Thread Archive
Shirley, We are so sorry to hear about your mom. We just wanted you to know that you and your family are in our thoughts and prayers. God bless you all. --Lisa & Rolando



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Re: Now where's Shirley

Re : Now where's Shirley --- Joann Humphrey
Posted by Joanne Matuzas , Feb 24,2002,00:55 Top of Thread Archive
Joann, give us the latest update on your limited myectomy...Joanne M. San Diego, CA



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Re: Now where's Shirley

Re : Re: Now where's Shirley --- Joanne Matuzas
Posted by colleen , Feb 24,2002,20:13 Top of Thread Archive
Shirley I am sorry to hear about your Mother.
My sympathy for you and your family
My mother died when i was 49.
Take Care
Colleen in IL





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Re: Now where's Shirley

Re : Re: Now where's Shirley --- colleen
Posted by Ann Doyle , Feb 25,2002,18:06 Top of Thread Archive
Shiley, I am so sorry to hear about your mother. How is your father doing? How was his mental health before this happened? Has he made any plans. This must be so hard on him. You sure have had a rough time lately. Your due for some good times. Ann Doyle



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Re: I'm still around/Sally

Re : Re: I'm still around --- Sally - in - Idaho
Posted by kathy , Feb 25,2002,09:22 Top of Thread Archive
I stayed up late enough last night to watch part of the closing ceremonies. What an eclectic mix of American music they had! Only saw a brief portion of Sara Hughes'performance which appeared to be spectacular! also the Jamaican bobsledder was so happy. Couldn't watch the whole thing howvever. Their fireworks were spectacular but bothered my eyes even on the t.v.



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