A Sense of Community ...


Posted by Moderator-JB , Aug 19,2001,20:08   Archive
Thinking of those that are attending the conference in AZ reminds me of the most impressive thing I found at the one conference I was able to attend in CA a couple of years back.

The panels were good, the info helpful - HOWEVER, walking into a group of people that were like me, accepted me for myself, laughed and chatted with me as if I were a normal, intelligent human being was FANTASTIC! Money couldn't buy that comfort.

We can do the same thing on this BB, though it's not quite the same. Welcome new people with open arms and say, we understand.

New people, voice your fears, joys and hopes. If you only read (lurk)the board you don't get enough out of it. Post a short note about yourself if you're new. Tell us about your bad day and we'll try to make it better.

Join in ~ Community is the name of the game.

Judy Blackman
blkmn36@earthlink.net
Moderator




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Re: A Sense of Community ...

Re : A Sense of Community ... --- Moderator-JB
Posted by Sally - in - Idaho , Aug 19,2001,22:53 Top of Thread Archive
Well said, Judy. I sometimes think (know) that the people here on the BB are the only ones who understand ... or possibly even care. I'm sure our families try very hard to support us and be there for our needs, but it must be very difficult for them.

This morning I had breakfast prepared and the lunches made for them to take to the field and was just sitting quietly off to the side, trying to stay out of the way. It was a bad eye morning and they stubbornly refused to stay open, so I just let them close and was resting, when my husband said, "Are you so tired at this time of the day all ready that you have to sit there sleeping?" I told him that I couldn't open my eyes and, of course, he wondered why not ... if I'd just go to bed earlier I'd be able to wake up. I ended up crying and that didn't help things.

I did go to church today since it was so much cooler. The lights have not improved and become more kindly since I last was there, so my eyes clamped shut and I dozed off a time or two. The pastor doesn't mind, or so he says. He offers to make tapes for me for what I miss!

Sorry to ramble on with my complaints. I do appreciate this "community" so very much!

Sally in North Idaho at 9:00, wondering when my guys are going to come home and eat. Husband already went to bed, sons are still out working.




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Re: A Sense of Community ...

Re : Re: A Sense of Community ... --- Sally - in - Idaho
Posted by Lynn Yarbrough , Aug 20,2001,12:29 Top of Thread Archive
>my husband said, "Are you so tired at this time of the day all ready that you have to sit there sleeping?" I told him that I couldn't open my eyes and, of course, he wondered why not ... if I'd just go to bed earlier I'd be able to wake up. I ended up crying and that didn't help things. <

Good grief, woman! How is it that your husband remains ignorant of the basic facts of BEB? Haven't you told him? Haven't you shown him the literature describing how you and thousands of us simply can't open our eyes all the time?

From what you have described I conclude that this man is ignorant, and that ignorance may just be your own fault, because you haven't taken ownership of the problem and sat down with him to explain that we blephros have limits, and they're not our fault, that blinking has nothing to do with how much sleep we get, and there's no cure for the problem, so he should learn to live with it and get off your case.

It's tempting to try to get somebody - ANYbody - else to accept ownership of some part of the problem, and I have fallen into that trap many times. But bottom line, it's my problem - and yours is yours - and we can only master what we take responsibility for.

--- Lynn




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Re: A Sense of Community ...

Re : Re: A Sense of Community ... --- Lynn Yarbrough
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Aug 20,2001,13:18 Top of Thread Archive
Lynn, please don't be so hard on Sally. Some men just don't get. My husand is just like that, he just doesn't understand. He thinks if I "just think postitive" or "tell your eyes to stay open". that will do the trick. He doesn't care if my eyes slamp shut as soon as I get up as long as I fix him his breakfast and lunch. It is not a matter of educating them. I don't know long you have been married Lynn but I think the longer you are married to someone they began to take us for granted. (47 yrs for me) They don't mean to, they just like their comforts. I tkink it also has something to do because of the way I was raised. Men worked, women took care of the home. I know people don't think that way today.

My husband refuses to take me to my doctor appt., I have to get my daughter or daughter in law to take me, but he was there for my surgery. I too get angry at him because of his behavor. This past Saturday my washing machine broke. I was cleaning house and washing clothes. He gets mad because "on his one day off" he has to fix my washing machine. I didn't do on purpose. When is my "day off"? Who takes care of me when I can't see to do my work. I just go ahead and do it.

I think we have a right to be depressed sometimes, to cry, to grieve to want to go back to our former lives. We get over it and go on living, een tho it is so hard sometimes. I think people with Blepharospasm should all get a Medal of Survival, endurance, fortitude and courage. It takes all those qualities to live with this disorder/disease.

Thank all of you for letting me vent my frustrations. As some of you know I had eye surgery August 1. I thought that I would be able to see and the clamping shut of my eyes would be over. I knew it would be no cure but I did expect some improvement. WRONG. I have jumped from the frying pan into the fire. My eyes are no better because now my under eye spasms are worse and my eyes still clamp close and I can't see. My eye lids itch something fearce and nothing helps it for long. I have already taken 8 Bendryl today - my limit I guess. I put the antibiotic ointment on the eyes and lids plus I keep putting ointment into my eyes
and they still itch and it is driving me crazy. I called the doctors ofice and was told to continue to do all that I have been doing BUT to put the ointment in the eyes more often. I go back next Monday, 8/27.

Joyce in NC who is really having a BAD DAY.




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Re: Bad Days for Sally and Joyce

Re : Re: A Sense of Community ... --- joyce whitt/NC
Posted by June in Toronto (June Floyd,June in Toronto), Aug 20,2001,13:33 Top of Thread Archive
I'm so sorry you two are having difficult times with husbands that don't always understand about beb. I'm glad, Joyce, you told Lynn not to go so hard on Sally - that saying about "until you tread in my shoes you won't understand" is so right. I'm lucky to have a hubby that seems to know what I'm going through IF I discuss it with him - and I try to comprehend his medical problems as well.

I hope your day gets better - please take care

June in Toronto




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Re: Bad Days for Sally and Joyce

Re : Re: Bad Days for Sally and Joyce --- June in Toronto
Posted by Mindy , Aug 20,2001,14:23 Top of Thread Archive
Dear Sally & Joyce,
I'm sorry you're having a hard time right now.
Rest assured you are not alone, we all have our
good and bad days.
It's very difficult for someone else to understand,
especially when we go from moment to moment not knowing when we're going to "shut down". It becomes frustrating for us as well. No matter how much we know about BEB.
There are many times I'm sure, when our husbands can say the very same thing and it wouldn't bother us in the least. No two people handle things the same way. But it doesn't mean they love any less. We go through life handling things the best we can, learning as we go.
Joyce, I remember Shirley saying the same things after her surgery,
especially about the itching. I think her itching was on her forehead.
As soon as she gets home, I'm sure she will help you along. I remember
she had to put warm moisture on her eyes.
Big Hugs to both of you, my prayers are with you.
Don't forget "this too shall pass" - and better eye days are
just around the corner.
Mindy in NY




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Re: Bad Days for Sally and Joyce

Re : Re: Bad Days for Sally and Joyce --- Mindy
Posted by Corrie Thomann , Aug 20,2001,15:09 Top of Thread Archive
This is the first time For me to post on this board.I am 69 years old had Blepharospasm for 6 years Went through all the bad experieces with this disorder. I had injections for four years,with poor results and side effects.Had injections from three different Drs.In Dec. 1999 I went to a well known Surgeon in Utah,who did the upper limited myectomy.In two weeks I was driving and doing much of the things I did before the Blepharospasm came on.I did have the itching and crawly feeling that you are having. But that will pass. I still have some spasms in lower lids and some tingling in cheeks, But I have not had any injections in nearly two years nor do I take any medication.Dont know what the future holds for me,But the surgery definitely did help me.I am new with this computer,so please forgive the mistakes. Corrie in S.C.



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Re: Welcome, Corrie!

Re : Re: Bad Days for Sally and Joyce --- Corrie Thomann
Posted by Sally - in - Idaho , Aug 20,2001,15:25 Top of Thread Archive
Hi Corrie,

Welcome to the BB! How encouraging that the surgery helped you so much. It seems that not everyone attains such positive results. I don't know if that will be an option for me somewhere down the road or not, as I am not a particularly good candidate for any surgery, due to other health problems.

My mother had neurectomy (I think that's what it's called) in the 1960s for her blepharospasm. In fact, she had it four times! In the end, it did "cure" her, although it left one side of her face droopy and one eye won't completely close and tears all the time. That surgery is no longer done because of so many adverse side effects. She cannot understand my "stubbornness" in refusing to have that done, although my neurologist even told her face-to-face that it is no longer acceptable.

You and I are of the same generation (I'm 66) so apparently we were fairly late in age to acquire this disorder. I'm sure it is much more difficult to handle for the younger persons, and they certainly have my support in any way that I can help make their lives more pleasant.

Please tell us more about yourself when you feel like doing so, and do come back here often.

Sally in North Idaho

--modified by Sally - in - Idaho at Mon, Aug 20, 2001, 20:59:02




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Re: Bad Days for Sally and Joyce

Re : Re: Bad Days for Sally and Joyce --- Corrie Thomann
Posted by Joann Humphrey , Aug 20,2001,16:46 Top of Thread Archive
Corrie, welcome to the bulletin board. Am happy you're able to drive agin & doing well. I'm 65 & will talk with my neurologist about surgery. Botox doesn't sem to work as well as it did a yr. ago.
Joann in Ark.



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Re: Bad Days for Sally and Joyce

Re : Re: Bad Days for Sally and Joyce --- Corrie Thomann
Posted by Joanne Matuzas , Aug 20,2001,17:06 Top of Thread Archive
Corrie, thanks so much for posting and telling us a bit about yourself.
I suspect that the well-known surgeon who did your upper myectomy in
Utah was Dr. Richard Anderson? Shirley just had surgery in April and would probably like to compare notes with you. She'll be posting once
back from the conference this past weekend. Glad to hear you are doing
well--without botox and meds. that's terrific. I have blepharospasm,
some meige and breathing irregularities. I did get a bit more info at the conference and have an appt. for a second opinion from a Dr. Mark Lew shortly. Take care and visit with us again!!! Joanne M. San Diego, CA



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Re: Bad Days for Sally and Joyce

Re : Re: Bad Days for Sally and Joyce --- Corrie Thomann
Posted by Kelly Saffell , Aug 20,2001,18:12 Top of Thread Archive
Welcome Corrie. My daughter's name is Cory (she's 3). I have also had beb/meige for 6 years. I developed symptoms right after having my first baby at the age of 26. After Cory was born I didn't respond well to botox and quit my job as a cpa. I now respond well enough to care for home and daughters but not much more. My doc REALLY doesn't want me to think about surgery at my age (32) in hopes of something more promising in the near future (we can only pray). I'm so glad your surgery was a success. Share more when you feel comfortable.

Kelly in Dallas




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Re: Not everyone should have surgery

Re : Re: Bad Days for Sally and Joyce --- Kelly Saffell
Posted by Shirley-Arkansas-USA , Aug 22,2001,04:43 Top of Thread Archive
Hi Kelly,
I think that your doctor is right and I agree with him totally. I don't feel that anyone should have the surgery that can be controlled with botox and or meds or whatever. It is not a cure-only a permanent treatment option with varying degrees of success. You are very young and you may have other, better options down the road. I'm not against the surgery, done by a competent doctor and where other options have failed but it is not something to jump into without a great deal of thought.
I'm always concerned for people who have recently developed this disorder and feel that if they have "The Surgery" that they will be fixed or cured and that is just not the case. And what if they happen to be one of those very, very few people that just gets better for whatever reason? What a tragedy to have had the anatomy around the eyes changed forever, for nothing. There are times that surgery is a valid option but please, people, wait till you get there and do your homework well in advance.

Shirley in AR.




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Re: Welcome to the bb

Re : Re: Bad Days for Sally and Joyce --- Corrie Thomann
Posted by Shirley-Arkansas-USA , Aug 22,2001,04:25 Top of Thread Archive
Hi Corrie,
I just wanted to add my welcome to you. It is so nice to hear that you are doing well and that the surgery was helpful for you. To be able to go without the injections or any medications is wonderful to hear.
We are all somewhat different with our symptoms and therefore will also obtain varying results from any surgery. I had an upper limited myectomy by Dr. Anderson in Salt Lake four months ago. I have already had my second set of botox injections-for my forehead and lower lids and continue to need the meds, too. I have gotten improvement and am more functional than I was but definitely not symptom-free by any means.
I am glad that I had the surgery done and would do it again.
I'm glad that you posted. Feel free to chime in, anytime.
Please don't worry about any mistakes or typos. We all leave out words, mispell things and in general-just botch up, but with so much blinking going on, who cares?

Shirley in AR. in the middle of the night




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Re: Bad Days for Sally and Joyce

Re : Re: Bad Days for Sally and Joyce --- June in Toronto
Posted by Kelly Saffell , Aug 20,2001,18:21 Top of Thread Archive
I'm sorry you aren't getting the support you need at home. My husband is where I get most of my support and strength. Our daughters are 3 and 6 and he is always taking them places with him (even to get his hair cut)and putting both of them to bed when he is not on duty so that I can get a few minutes to revamp. My husband is also a nurse which helps I think. I saw his prayer list from the Fellowship of Christian Firefighters meeting (he is also a firefighter/paramedic) laying on the bed one day and my name was at the top of the list. He basically had to raise himself so he is pretty independent when it comes to cooking, cleaning, ironing, etc. He was cheated out of his childhood to some degree but it also turned him into an awesome husband. My prayers are with you and hopefully your days will improve.



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Re: Bad Days for Sally and Joyce

Re : Re: Bad Days for Sally and Joyce --- Kelly Saffell
Posted by Billie Lowe (billie lowe,Billie Lowe), Aug 20,2001,22:06 Top of Thread Archive
Sally & Joyce, I'm sorry that your husbands have a hard time understanding. My husband said that he understood things a little better after attending the conference last year. Have they ever gone?
I know it makes it hard to deal with things if you feel like you have to fight everybody else just to try to get them to understand. It also hurts a lot. Ill pray for your husbands to have understanding.
Billie



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Re: A Sense of Community ...

Re : Re: A Sense of Community ... --- joyce whitt/NC
Posted by Joann Humphrey , Aug 20,2001,16:41 Top of Thread Archive
Shirley mentioned having a lot of itching also. I'm sure that will be better in due time. The conference was great. Sorry you had to miss it.
We all have a bad day occasionally. Just think positive, & hope your husband understands soon.
Joann in Ark.



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Re: A Sense of Community ...

Re : Re: A Sense of Community ... --- joyce whitt/NC
Posted by Sally - in - Idaho , Aug 20,2001,20:57 Top of Thread Archive
Hi Joyce,

I hope that good results from your surgery come forth soon; you've earned them after that distressing hospital stay!

Thanks for your kind words. I'll e-mail soon.

Sally in North Idaho




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Re: Post-op itching and spasms

Re : Re: A Sense of Community ... --- joyce whitt/NC
Posted by Shirley-Arkansas-USA , Aug 22,2001,04:11 Top of Thread Archive
Hi Joyce,
Sorry that you are having so much frustration with the itching and spasms. I'm four months post-op and the itching is still there-though much less frequent. I find that lotion or cream (cool) on my forehead and eyebrows and upper lids and temples helps a bit. Also, a cool, wet washcloth draped over that area helps a little (after you have taken off the top layer of skin by rubbing your forehead and eyes with it). :-[ Try not to do that although you want to and I think that I have on occasion in the last several months.
You are just 3 weeks post-op and you've got a lot of healing going on. Continue to use ice paks or those gel paks that you can refreeze. Wrap them up in a hanky or washcloth and lay down and try to relax and the itching will slowly (excruciatingly) subside. You can also use warm, moist heat. Get a good size pan (so it won't cool off too quickly) and fill it with water as hot as you can stand. Put on some nice music or turn the TV on to something that you can listen to and put the pan of water beside you with a washcloth. Get your washcloth wet and wring it out and plop it gently across your eyes. You'll have to re-wet it with the hot water every couple of minutes but it is worth it. This is a good time for your husband to run back and forth fetching you new hot water. Tell him to just be glad that you're not having another baby. ( I know, it didn't work for me either.) Maybe Virginia would loan out Carl. ;-) Although, after all those botanical garden, Virginia may be fetching him cool gel paks.

Keep using the ointment around your eyes like the doctor said. I'm sure that the Benadryl is helping some. Don't take any more than 8 a day unless your doctor says that you can.

I really think that you are just noticing your lower eyelid spasms more now than before the surgery. Before the surgery, your upper lids were spasming and squeezing and pulling along with your lower lids and they just came together. I always was more aware of my upper lids before my surgery as my forehead and eyebrows were also involved in the spasms. Now, the upper lid spasms are gone and you are more acutely aware of what the lower ones are doing. And they are doing plenty and probably feel like they are going to turn themselves inside out. I really believe that botox will help this when your doctor will give it to you as the swelling goes down. Talk to him about it.
Try not to get too discouraged. You are healing and it is a slow process. You and I are both somewhat "hyper" individuals and I think that we are more sensitive to some of these "itches and twitches" than others may be. I'm always acutely aware of all these different little sensations and they tend to drive me bonkers.

Well, I've gone and written a book again. Sorry. :~{
Hang in there and let us know about all those irritating side-effects. We can at least sympathize.

Shirley in AR. who has an itchy forehead-I will not scratch it-I will not scratch it! Aauugh!




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Re: Post-op itching and spasms

Re : Re: Post-op itching and spasms --- Shirley-Arkansas-USA
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Aug 22,2001,09:27 Top of Thread Archive
Hi Shirley, thanks for the advice but I have already discovered the ice packs ...again. My eyes were itching so bad yesterday that I thought I would scream.. takes a lot for me to scream and it just hit me... dud... a cold washcloth might make them feel better. Wonder of wonders. it did. I keep two in the freezer in plastic bags and take one out at a time and just lay them across my eyes... Ah...feels so good. I think sometimes we just get caught up in our discomfort we forget what works.

I am not real happy with the brow lift. My right eye looks worse than it did before surgery. I thought he would make an incision right under the brow line and pull up the skin underneath. Mine looks like he tacked it in two places. Oh well, I go back Monday, maybe I will get some answers.

Joyce in NC - my friend is coming to take me to Wally World (Wal-Mart) that always perks me up.




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Re: Post-op itching and spasms

Re : Re: Post-op itching and spasms --- joyce whitt/NC
Posted by Shirley-Arkansas-USA , Aug 22,2001,16:13 Top of Thread Archive
Joyce, you can also use sponges for ice paks. Just wet a sponge of any size that you like and plop it in a plastic ziploc bag and freeze it. Take it out and it will soon conform to where ever you put it. Inexpensive and easy. The schools use them all the time around here.

Sorry about the brow lift. Make a list of questions. And let us know how your appointment goes.

Shirley in AR.




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Re: Post-op itching and spasms

Re : Re: Post-op itching and spasms --- Shirley-Arkansas-USA
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Aug 23,2001,10:28 Top of Thread Archive
Shirley, Instead of using a pan of hot water I got out an old crock pot and filled it half full of hot water and pluged it in. Used 2 washhcloths - One I put it on the eyes and when it cooled down, I just used the other one - and just switched back and forth.

I just plugged it in close to me so I could lay on the living room floor and listen to my music. You are right, it was very soothing.

My top lids are still closing on me and I am very frustrated about that. I had hoped that part would be better but when I go to the doctor Monday maybe Botox will work this time.

Joyce in NC who has decided to get back into my painting. I sanded an old chair yesterday - used laquer thinner to remove most of the surface and now I need to just use some more muscle power to sand somemore. This is an experiment because I am thinking of doing my kitchen chairs and decorateing them with strawberries, my favorite think to paint. I did all this outdoors under the shade of my pecan tree so the fumes did not bother me.




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Re: Post-op itching and spasms

Re : Re: Post-op itching and spasms --- joyce whitt/NC
Posted by kathy , Aug 23,2001,10:33 Top of Thread Archive
that sounds like a great thing to do. for some reason i am visualizing some of these posts more vividly than usual. perhaps we are all becoming better writers.



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Re: Post-op itching and spasms

Re : Re: Post-op itching and spasms --- joyce whitt/NC
Posted by Christel-California , Aug 23,2001,17:08 Top of Thread Archive
The many uses of a crock pot. What a great idea though, Joyce.
Your kitchen chairs sound lovely, when you are done perhaps you can take a picture and share it with us.
Christel in Ca. who misses kitchen chairs, no breakfast area in this house, just a kitchen counter.



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Re: Post-op itching and spasms

Re : Re: Post-op itching and spasms --- joyce whitt/NC
Posted by Shirley-Arkansas-USA , Aug 23,2001,17:43 Top of Thread Archive
Joyce, What a great idea for using the crock pot. Why didn't anybody suggest that to me? I kept having to get up and get more hot water. I would never have thought of a crock pot and keeping the water warm that way. Brilliant!! That one needs to go into the book of helpful hints. I'm glad that it helped a little for awhile. I found that the warm moist heat helped.

Are your top lids just closing or are they squeezing? I would think that the spasms and squeezing would be gone from your upper lids. Since you have apraxia the surgery will just make it easier for you to get your eyes to open, but they may still want to close. Have your husband sit in front of you and tell him to ask you to open and close your eyes. I bet that you can do it quite easily, now. Before your surgery you probably had great difficulty getting them to open on command. The problem comes in with being able to keep them open. The surgery can't fix the underlying apraxia problem. It is still there but you should be able to open your eyes more easily. For me, it is kind of like the signals from my brain to my eyes are wired wrong and they keep telling them to close. Not necessarily squeezing closed but just closing. The surgery takes away any extra, droopy, heavy excess skin from the upper lids and your levator muscle was probably tightened and the squeezing muscles are gone now from your upper lids but your brain is still sending signals to close the eyes. That part can't be surgically corrected. All they can do is make it easier to get them open. That is why I still take the Adderall. It does help in some way to let my brain tell my eyes to open. I think that it corrects a signal that isn't working properly. That is only my opinion, though, and the doctors aren't using this drug for this symptom. I talked to Dr. Stacy about it at the conference and he has never used it and said that he didn't know why it would work. Same thing from Dr. Perlmutter, Anderson and my MDS here locally that prescribes it for me. He just knows that it helps me so he is willing to prescribe it.

Botox will not help your apraxia. Hopefully it will help your lower lid squeezing, though.

Are you supposed to get the botox on Monday?

Shirley in AR. who just got home from taking #1 son to college. They had mistakenly given away his room. In talking with a friend last night, the friend offered to share his single room that he had gotten. It was actually outfitted for a double room so the university agreed and everybody is happy now.




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Re: Post-op itching and spasms

Re : Re: Post-op itching and spasms --- Shirley-Arkansas-USA
Posted by joyce Whitt/NC (Joyce Whitt,joyce Whitt/NC), Aug 23,2001,18:29 Top of Thread Archive
Shirley, I have my nails done and one of the manicurist that I used to go to , after she had worked on my nails, she would take a wash cloth out of a crock pot for us to use in cleaning our hands. That was what popped into my mind when you talked about the hot water so it is not completely my idea. See how honest I am.

I just went upstairs to the bathroom and looked at my eyes in the mirrow. I can open and close them at will but my eyebrows and top lids "twitch" and I can see the spasms under my eyes. I have the most trouble when I start to walk - even just now as soon as I walked out of the bathroom and came back down the stairs my eyes closed and squeezed shut. Same problem when I go out shopping - when I walk they close. When I ride in the car, they close, BUT they are easier to get back open I think I am wired wrong.

I don't know for sure if he will use Botox on my eyes Monday or not, I just assumned that since I was haveing the spasms under my eyes and if they are making my eyes close that he would.

Joyce in NC who just made two loaves of sour dough bread. Gave both of them away. One to my grandson who ate half at one sitting. The other went to a person who works with my husband.




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Re: Post-op itching and spasms

Re : Re: Post-op itching and spasms --- Shirley-Arkansas-USA
Posted by Corrie Thomann , Aug 23,2001,20:02 Top of Thread Archive
I thank all of you girls for your welcoming words.I understand the experience of the itching and burning in the lids-You are right to use the alternating cold and warm compresses. Dr A. advised me to massage vit. E oil on forehead and temple area-If it got too bad on forehead to wear a headband around the brow area. I must say that the itching took several months to go away. The feeling in forehead and swelling was between 4 and 6 months before it left.I was sore around the temple area for about 1 year, but was not enough to take medicines for.After the surgery my right brow was higher than the left but after a time it looks about even now. I understand that there is some regeneration of the nerves and that causes the strange feelings in the brow area.
As I posted a few days ago I had the limited myectomy nearly two years ago, The results are not ideal,but I am so much better and I dont regret having it done. I would not advise having it done unless like myself the Botox failed to help.
Wish I had known about this BB for the four years that I felt so alone with this eye problem. It is wonderful for the support you have for each other. If I can be of any help to anyone, Please ask!



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Re: Post-op itching and spasms

Re : Re: Post-op itching and spasms --- Corrie Thomann
Posted by Shirley-Arkansas-USA , Aug 23,2001,20:46 Top of Thread Archive
Hi Corrie,
I'm glad that you found the bb, too.
I'll have to try the headband on the forehead. I still have lots of itching-eyes and forehead. I expected it, though. Not that that makes it any more pleasant. Years ago I had a benign fatty tumor taken off my back and for years afterwards it would all of a sudden start itching.
I do not have the soreness or tenderness around the temple area that you spoke of. Things were a little tender for about a month but that has gone now.
Stick around and help us out. You know how it feels to be alone with this and I don't wish that on anybody. I'm glad that we have this special place to go where people understand.

Shirley in AR. who needs to be doing other things. @2 son moves into his dorm tomorrow. Empty Nest!!




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Re: Post-op itching and spasms

Re : Re: Post-op itching and spasms --- Shirley-Arkansas-USA
Posted by Billie Lowe (billie lowe,Billie Lowe), Aug 23,2001,21:53 Top of Thread Archive
Hey Shirley, several years ago, my oldest daughter got married, & our other daughter moved to her own place a couple of months later. I really had a hard time dealing with that. Both sons going off to college will be an adjustment. It does take some getting used to.

We tried to keep busy while you all were gone, but we really did miss you. We will plan toward going next year.

Billie




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Re: Next conference and a quiet home

Re : Re: Post-op itching and spasms --- Billie Lowe
Posted by Shirley-Arkansas-USA , Aug 24,2001,15:31 Top of Thread Archive
Hi Billie,
I was very happy about all the posting that was going on while we were away. I missed all of you, too. I do hope that you get to go next year. I hope that I can go again. Will just have to wait and see when it gets closer to the time.

It is going to seem really strange with no sons around here. It may be too quiet.

Shirley

--modified by Shirley-Arkansas-USA at Fri, Aug 24, 2001, 15:32:42




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Bulletin Board Policy ...

Re : Re: A Sense of Community ... --- Lynn Yarbrough
Posted by Moderator-JB , Aug 21,2001,18:24 Top of Thread Archive
Lynn:

The purpose of this bulletin board is support.

We do not all have the same life situations to deal with. Support groups are few and far between. True understanding or acceptance of the disorder by one's spouse or family is also just about as elusive. (We have a hard enough time understanding it ourselves.)

Any individual, male or female, who is not able to work due to this disorder and contribute income to the marriage purse, often find themselves on the lower end of the scale of power in a relationship.

Judy Blackman
blkmn36@earthlink.net
Moderator





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Re: Bulletin Board Policy ...

Re : Bulletin Board Policy ... --- Moderator-JB
Posted by Christel-California , Aug 21,2001,19:14 Top of Thread Archive
THANK YOU, JUDY !!

C.in Ca.




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Re: Bulletin Board Policy ...

Re : Bulletin Board Policy ... --- Moderator-JB
Posted by Lynn Yarbrough , Aug 22,2001,20:23 Top of Thread Archive
I understand your points and I apologize for sounding prickly (or worse) in my response. I want to be supportive, but I also come from a background where self-support is important and NON-support is not part of my world-view. I have perhaps misread the original post and I'm sorry if I offended anyone. But the image of the husband coming home, finding his wife resting her eyes, and complaining about her sleeping (when she was forced to close her eyes by BEB) churned up my fighting spirit, and I couldn't understand how such an incident could occur if a support system was in place. I blame the husband for his attitude, and I blame the wife for tolerating it. I'm probably wrong on both counts.

Sorry,

--- Lynn




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Re: for Lynn: Suggestions, please

Re : Re: Bulletin Board Policy ... --- Lynn Yarbrough
Posted by Sally - in - Idaho , Aug 23,2001,00:34 Top of Thread Archive
Lynn ... What would you suggest to change the situation? Things in a person's past and the growing up years tend to dictate the adult personality. I find it very difficult to change things, short of a two by four on the side of the head.

My husband did take me for my Botox injections today, at the insistence of one of our sons. That doctor is in a difficult place for me to park and then stumble my way to his office. I was so thankful that Jerry did take me, as I was asleep by the time we got out of Spokane. I was quite feverish from these injections and slept very deeply all afternoon.

It's my conclusion that one just has to accept that the partner's foibles are set in stone, and just go on from there with whatever is offered. The stress of continually trying to change someone can be worse than the original complaint.

Sally in North Idaho




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Re: for Lynn: Suggestions, please

Re : Re: for Lynn: Suggestions, please --- Sally - in - Idaho
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Aug 23,2001,10:58 Top of Thread Archive
Sally, I think you hit the nail on the head when you said, "Things in a person's past and growing up years tend to dictate the adult personality" I stated some facts about my husband and people might tend to think of him as an uncaring person. He hates to see me suffer with this disease/disorder and I think he deals with it by not making too much of it.

Also, my husband is never sick and people who are never sick, can't sympathize with someone who is. He never has a headache so it is hard for him to relate to how I feel when I have a headache. He never goes to the doctor, his idea being if he should get some disease - what will be will be. I did talk him into going to a doctor approx. two years ago to have a mole removed from his back, it had begun to change shape and turn black. Well the doctor found out that he has an irregular heart beat and immediately put him in the hospital. He jokingly said, it was all my fault because I MADE him go to the doctor.

The reason he feels the way he does is because of his growing up years. You just didn't go to the doctor unless you were dying. His family was poor and couldn't afford doctors. There was no love or affection shown, his father was a very hard man and I guess my husband's way to cope was not to show too much emotion.

I know he loves me and cares about me, I know how he is and I accept the him the way he is. We have been married 47 years this past August 7th. But no matter how long someone is married there is always the "litle" things that will annoy us. We speak our mind and then move on.

Joyces in NC




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Re: for Lynn: Suggestions, please

Re : Re: for Lynn: Suggestions, please --- joyce whitt/NC
Posted by Sally - in - Idaho , Aug 23,2001,20:31 Top of Thread Archive
Joyce, I think we are married to clones!! Most of what you said about your husband is true of mine. I do know that he actually cares, deep down, just doesn't feel it is correct to show it. Several years ago, when umpteen people were trying desperately to insert an IV into my hand and also draw blood from another place, it went on so long and was increasingly distressing to me, and my husband asked if they couldn't just use his blood and be done with it. He was quite upset then.

I had the strongest reaction to Botox this time that I've ever had ... like having the flu ... and Jerry has been fairly tolerant yesterday and today of my infirmities. I have had to sleep most of the time and have a terrible headache, chills and feverish. The stuff must have been straight poison this time. I said it will either cure or kill!

Sally in North Idaho where it rained a bit today and is nice and cool.




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Re: for Lynn: Suggestions, please/sally

Re : Re: for Lynn: Suggestions, please --- Sally - in - Idaho
Posted by kathy , Aug 24,2001,09:55 Top of Thread Archive
i also get reactions like that sometimes with botox. i wonder if the potency could somehow be different.



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Re: for Lynn: Suggestions, please/sally

Re : Re: for Lynn: Suggestions, please/sally --- kathy
Posted by Sally - in - Idaho , Aug 24,2001,16:04 Top of Thread Archive
Kathy, I am beginning to wonder about the potency, too. This is my third day now of feeling like the flu, and I'm sure I don't have it as the symptoms hit so quickly after the injections. My husband says I look much "puffier" than usual, also. He thinks I'm crazy to willingly put that poison into my system, and sometimes I wonder about it.

Just woke up for a bit and checked my e-mail and thought I'd glace at the BB. Might venture downtown to get the snail mail and hope that wakes me up. It's cool here today and all I really want to do is curl up in a blanket and sleep.

Sally in chilly North Idaho




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Re: for Lynn: Suggestions, please/sally

Re : Re: for Lynn: Suggestions, please/sally --- Sally - in - Idaho
Posted by kathy , Aug 25,2001,17:02 Top of Thread Archive
i usually get the flu like symptoms as the botox starts to work, say 4-7 days afterwords. i do remember feeling like that once right away, though. i think it's the excess draining down the nasal passages or wherever it goes, but your potency definitely sounds like it was stronger than usual to affect you so.



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Re: for Lynn: Suggestions, please

Re : Re: for Lynn: Suggestions, please --- Sally - in - Idaho
Posted by Lynn Yarbrough , Aug 23,2001,12:41 Top of Thread Archive
Actually I have little success in changing anyone, with the singular exception of my wife and a few Christian friends. All the people I have influenced have grown to be stronger, I believe.

Some of you met my wife Pat. When we married she was timid, lacked confidence, and showed some behavior patterns that we didn't understand until much later. But I loved her and made the committment to help her to grow into a strong person. (In my youth I was appalled to hear of women friends of my parents who, having lost a spouse, found themselves unprepared to live alone: couldn't drive a car or write a check or make a rational decision. Not in my family, I decided.) I am ten years older than Pat is, so I gave her the checkbook and the trust that goes with responsibility for our finances. (Yes, I could have held onto that responsibilty, but not after I'm dead.) We make decisions together. Finally, after we had been married for twenty years we began to understand how some of her behavior was rooted in her being an ACOA - adult child of alcoholics. So we worked that out together over several years.

Early on, she was puzzled by my blinking almost as much as I was frustrated by it. As I struggled through misdiagnoses and inability to drive, she picked up the slack, and even drove us to the hospital to have our second child. She rejoices with me over the success of Botox. Now she goes with me to conventions etc. and is helping me to identify unaware Blephros that we encounter in our travels. We share our story with them.

I tell you all this to explain that my view of a marriage is one of true partnership in which either is capable of running the whole show but both are dependent on each other for support. Where one member is deficient, I have no tolerance for the other not being supportive of that deficiency. But I do get angry when I see people putting each other down. Given the opportunity, I would like to change things. But mostly I have to watch in frustration.

--- Lynn




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Re: for Lynn: Suggestions, please

Re : Re: for Lynn: Suggestions, please --- Lynn Yarbrough
Posted by Kelly Saffell , Aug 23,2001,15:56 Top of Thread Archive
Thanks for sharing some of your personal story with us. You actually sound alot like my husband. We have been married 12 years but as high school sweethearts have been together 18. I was only 20 and still in college when we married. He has always been my biggest fan - from watching me crowned homecoming queen, teaching me to drive, seeing me receive my college degree, and now he still thinks I'm awesome as a disabled cpa and stay home mom. I handle the finances and he has never questioned me regarding them. He buys me cards just because and leaves notes in my daughters lunch box telling her he loves her. He irons his own clothes ("if I wanted a maid I would have hired one..."), does the dishes every night and helps with bathing the girls. I couldn't ask for a better partner. His support has sustained me!

Kelly in Dallas




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Re: for Lynn: Suggestions, please

Re : Re: for Lynn: Suggestions, please --- Kelly Saffell
Posted by Christel-California , Aug 23,2001,17:25 Top of Thread Archive
LUCKY LADY !!

Christel in Ca. who now has that kind of husband too, guess I'm lucky in my old age.




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Re: for Lynn: Suggestions, please

Re : Re: for Lynn: Suggestions, please --- Lynn Yarbrough
Posted by Christel-California , Aug 23,2001,17:21 Top of Thread Archive
Lynn, you sound like a very enlightened person for someone of your (our) generation. I don't think you represent the majority though, certainly not in Germany where I grew up.

Christel




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Re: Bulletin Board Policy ...

Re : Re: Bulletin Board Policy ... --- Lynn Yarbrough
Posted by kathy , Aug 23,2001,10:11 Top of Thread Archive
lynn, i can see both sides of the misunderstanding. i have people that i am supposed to be close to , that i have explained this disorder over and over again til i am blue in the face and they still feign understanding, have asked me to do things which i can't and then try to make me feel guilty for saying no and could just generally care less. so i can understand the indignation you felt. actually you were trying to defend sally.



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Re: A reply for Lynn

Re : Re: A Sense of Community ... --- Lynn Yarbrough
Posted by Sally - in - Idaho , Aug 21,2001,18:44 Top of Thread Archive
Lynn,

I was a bit startled to read your scathing message and had not intended to honor it with a reply. However, I've done some thinking and feel that a couple of things need to be set straight.

First of all, I am not accustomed to being addressed as "woman" (except now and then by one of my sons in jest), but if that is your style of greeting to women of a certain age and status ... so be it. I am Woman!

Next, my husband is not "ignorant" of the basic facts of BEB. Yes, I have told him; yes, he has seen (but not really read literature per-taining to it; and he has sat in on a session of Botox injections at the request of my neurologist. He found an old issue of "Newsweek" to be deeply engrossing while the doctor was explaining things.

No, he is not "ignorant" ... described by Webster as: unintelligent, uninformed, illiterate, or uneducated. In fact, he is very intelligent, well informed about many topics, a literate person, and has a college degree plus two extra years. What he is, is: unconcerned about health issues. He leaves those matters to me to tend to myself. Sometimes this can be most dismaying and is not the way I would like it to be, but that's how it is.

It is not always possible to educate people about something they do not care to learn about ... if you have ever tried to instruct students in a classroom, you would know that!

I am not trying to get "somebody - ANYbody - else to accept ownership of some part of the problem." I fully realize that BEB is MY problem and I am doing all I know how to do to adjust, adapt, live with and be a useful member of society while searching for relief of the symptoms and praying for a cure to be found soon for all of us.

Thank you, Lynn, for your attempt to shape me up, or shake me up ... whichever fits. I hope the conference was beneficial and enjoyable for you and your wife.

WOMAN in North Idaho




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Re:Hear Me Roar

Re : Re: A reply for Lynn --- Sally - in - Idaho
Posted by Shirley-Arkansas-USA , Aug 21,2001,20:04 Top of Thread Archive
And what a woman you are! Intelligent, kind, caring, supportive, sharing, empathetic, wise, sympathetic, humorous, knowledgeable, giving, spiritual, strong and loving. You always have a kind word for everyone. You took a computer course and a writing course just recently. More than I can say for myself. You are always doing things for others-here on the bb and in your own neck of the woods.
You will probably even protect me when Virginia returns and gets me back for the "little embellishment" that I told about her. Well, maybe not. I deserve what ever I get. She is probably still hauling Carl around from botanical garden to botanical garden.

I am proud to have a friend like you.

You are a good woman.

Shirley in AR. getting two sons ready to go to college




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Re: Re:Hear Me Roar

Re : Re:Hear Me Roar --- Shirley-Arkansas-USA
Posted by Christel-California , Aug 21,2001,21:20 Top of Thread Archive
Sally, I agree with Shirley completely. I don't have enough imagination to add anything to that, she said it all.

Christel




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Re: Re:Hear Me Roar

Re : Re:Hear Me Roar --- Shirley-Arkansas-USA
Posted by Sally - in - Idaho , Aug 21,2001,21:28 Top of Thread Archive
Maybe they will enscribe on my tombstone that I was a good woman!!

Sally in North Idaho getting one grand-daughter ready to go back to college, but you would think it was at least a dozen from all the stuff I've been stumbling over for a few days. Beats me where it will all fit in that jail cell of a dorm room! But it came out of there this spring and they say, what goes out must go in ... or something like that.




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Re: A reply for Lynn/sally

Re : Re: A reply for Lynn --- Sally - in - Idaho
Posted by kathy , Aug 22,2001,16:27 Top of Thread Archive
i am laughing my head off right now. you may not think it very funny but the words both of you are using are almost more effective than hearing an out and out argument.



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Re: A reply for Lynn/sally

Re : Re: A reply for Lynn/sally --- kathy
Posted by Sally - in - Idaho , Aug 23,2001,00:25 Top of Thread Archive
I'm happy that Lynn and I were able to provide some entertainment. A laugh now and then is good therapy ... and cheap. I hold no animosity toward Lynn and had a good time answering him! Hope he feels the same.

Sally in North Idaho where it is possibly going to rain tonight, and we don't want that in the midst of harvest.




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Re: A reply for Lynn/sally

Re : Re: A reply for Lynn/sally --- Sally - in - Idaho
Posted by kathy , Aug 23,2001,10:13 Top of Thread Archive
if you just walked in on it, it was very funny. you could almost see the ruffled feathers flying. your dictionary definition was very effective.



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Re: A reply for Lynn

Re : Re: A reply for Lynn --- Sally - in - Idaho
Posted by June in Toronto (June Floyd,June in Toronto), Aug 23,2001,15:55 Top of Thread Archive
Oh, if only it were a perfect world and people supported each other completely as necessary. Unfortunately its not! Also the typed/written word often comes over harder than the spoken word - I guess that is what happened here when Lynn posted. Glad its all sorted out now.

June in Toronto - hope you, Sally, are feeling better today after your botox injections.




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Re: A Sense of Community ...

Re : Re: A Sense of Community ... --- Sally - in - Idaho
Posted by Christel-California , Aug 21,2001,19:56 Top of Thread Archive
Dear Sally and Joyce,

Being of your generation too, I understand about living with a chauvinist.
I'm really sorry you have so litte support from your husbands. I consider myself lucky that my husband is more supportive. He drives me to my appointments, and lately I have a lot of them and takes me shopping when I need to go. I try to keep that at a minimum, we both hate shopping.
When he sees me vacuum he frequently offers to do it for me and sometimes I take him up on it, most of the time I prefer to do it myself. This is the same husband who many years ago, when my son was 9 years old, (he's now 45) didn't allow this son to help his mom dry the dishes, because it is "women's work"!! I've lived with that attitude over a life time. When I was working, he never did a thing to help in the house and always felt entitled to be served front and back by virtue of being a man.
There came a time I took a stand (major) about 8 years ago. He was more or less motivated to gain some awareness from differnet sources. I'm so glad I did, because I couldn't do it now. It has made a world of difference. My only regret that I didn't do it 20 years ago.
When I was finally diagnosed, the first thing he did was search the net for information, to learn about this condition I was suffering from.
I will pray that something will awaken your husbands to become more supportive spouses.
It's a blessing we have this board to voice our complaints or whatever, if not here where else could we go.
Hang in there.
Hugs, Christel in Ca.

--modified by Christel-California at Tue, Aug 21, 2001, 21:23:38




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Re: Thank you all

Re : Re: A Sense of Community ... --- Christel-California
Posted by Sally - in - Idaho , Aug 21,2001,21:24 Top of Thread Archive
Thanks to all of you for your kind words. I don't mean to give the impression that my husband is a "bad" person, he just has priorities of what is important. I always know that when push comes to shove and someone is picking on me, I can depend on him. As a college student back in the 1950s, he was a championship wrestler and could have gone to the Olympics, but his parents wanted him to stay home and work on the farm that summer!! Anyway, he may have shriveled up and shrunk to a little bit of nothing physically from all the hard work, but his spirit is still in fighting shape and I have his support when it really comes to a crisis.

It takes all kinds in this world. Learning to tolerate others and their differences is what I consider one of the major traits of maturity. (It's not always easy for me to accept some knotheads, but I try.)

Sally in North Idaho who goes for Botox tomorrow.




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Re: A Sense of Community ...

Re : A Sense of Community ... --- Moderator-JB
Posted by Joanne Matuzas , Aug 20,2001,11:02 Top of Thread Archive
Hi all. Just got back from Phoenix and the bonding with the bb folks
was just terrific. Just loved putting faces with names. Laughed, cryed, learned a few things and as Judy mentions in this post, the openness
and friendliness of all the fellow blephros was great. I guess Shirley is not home yet but I have to tell you, I think my highlight was when she managed to get herself on Sunday's patient panel and promote our bulletin board. :<) I would like to emphasize Judy's message here to encourage all those who are lurking to come on out even for just a bit! Hello to those lurkers we met at the conference who knew much about us while we knew little of them. Now that we've met, come on and join
us!!

Glad to be back and I'm sure you'll hear from the rest of us soon. :<)

Joanne M. San Diego, CA




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Re: A Sense of Community ...

Re : Re: A Sense of Community ... --- Joanne Matuzas
Posted by Sally - in - Idaho , Aug 20,2001,15:28 Top of Thread Archive
Welcome "home," Joanne! It's good to see you again. Glad to hear that you had such a great time and were already well-known by the lurkers. Come on, people, come in out of the shadows and get acquainted with the rest of us.

Sally in North Idaho




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