Choice Comments


Posted by Shirley-Arkansas-USA , Aug 10,2001,20:03   Archive
I'm on a tear folks. This just keeps ringing in my ears over and over again. My mother-in-law was over last weekend for a brief visit. We were sitting around the kitchen table visiting and she sternly looks at me and says "I sure wish that you would just get over this thing with your eyes".
It was the way that she said it-like I was doing it on purpose. She had asked me how my eyes were doing and I had just replied "the same" and gone on to other things.
She then said that she would continue to pray for me to be healed. She sounded as though she was tired of praying for me. I thought to myself and probably should have said that if she wanted to continue to pray for me that she should pray for me to maintain my sense of humor, to be able to cope with daily life, to continue to feel compassion for others and to continue to want to help others. A cure may or may not be in my future.
Anyway, no comments need be made about this. It was just a comment that was made and I haven't been able to get it out of my head. Anybody else have any really choice comments that have been made to you and how did you feel? What did it make you think about?
Share some choice comments and reactions with me. We're being too quiet and you know that I hate that.

Shirley in AR. where the figs are all gone. sniffle, sniffle :-(




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Re: Choice Comments

Re : Choice Comments --- Shirley-Arkansas-USA
Posted by Sally - in - Idaho , Aug 10,2001,20:53 Top of Thread Archive
My mother has a similar refrain which she "sings" at least two or three times a month: "I wish you would stop being so stubborn and go have that surgery that I had and get cured."

She had what I believe is called neurectomy (?) about thirty years ago. In fact, she had it four times because the nerves kept growing back. She was left with one side of her face somewhat drooping, one eye that tears constantly and does not close completely. But she always tells me that at least she can see and doesn't have to stumble around like I do.

To the best of my knowledge (from the questions I've asked different doctors) that surgery is no longer being done by anyone.

And that's my "comment cross" to bear!!

Sally in North Idaho where it is much too HOT!!!




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Re: Choice Comments

Re : Choice Comments --- Shirley-Arkansas-USA
Posted by Billie Lowe (billie lowe,Billie Lowe), Aug 10,2001,22:25 Top of Thread Archive
Shirley, I can feel your frustration. I've had people ask me how my eyes are doing, and I usually answer like you did. Sometimes I might say not too good today or it's almost time for my injections so not very well right now. The one I hear the most from my friends is, Billie I kind of know how you feel, I was having trouble with my eyes today & couldn't see very well for awhile. I usually just smile. I know that they mean well. My sisters that live in my home town that I don't see a lot, (talk to them on the phone often) never ask me how my eyes are doing. I know they don't realize how much I struggle with seeing. I'm not sure why I let it bother me, I always wonder if they think it is all in my head & I'll probably get over it.
Anyway I can relate to what you're feeling, I guess we all can, since we've all had similar remarks make to us.
Your mother-in-law might be frustrated that the Lord hasn't answered her prayer for you, and wonder if you will think she's not praying hard enough.
I know this really sounds bad, but did you ever think that if you had cancer or some other disease that people would be more understanding.

Billie in Kansas where we have had temperatures in the 80's today . And
it feels wonderful. Has it got to you yet?




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Re: Choice Comments

Re : Re: Choice Comments --- Billie Lowe
Posted by Shirley-Arkansas-USA , Aug 11,2001,13:48 Top of Thread Archive
Billie, I have also had people relate their "similar" eye problsms to me and tell me they know how I feel. I think that they do mean well and just don't know what to say.
I think that with any chronic or terminal illness, there is a tendency for people to back off as they don't know what to say or how to act. I don't even know myself how I want people to act around me.

We did get your cooler weather and finally some rain. It's great. Thank you for sending it on over my way.

Shirley in AR.




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Re: Choice Comments/this one is long!

Re : Choice Comments --- Shirley-Arkansas-USA
Posted by Delaine Inman , Aug 10,2001,23:04 Top of Thread Archive
My husbands family doesn't believe in being sick and truthfuly they rarely are, but if they have a problem like a cold or flu they tough it out instead of going to the doc. I think our beliefs do help our immune system, but I also believe that some people have weak immune systems caused by who knows what and can't always tough it out. If I get a bad sinus infection and try to tough it out, I end up with bronchitis and a cough that lasts for months. Anyway my hubby goes to the doc only if I make him go for a check up. Which has been one time when he lost about 30 pounds when he was working rotating shifts at Saturn. He has missed 2 days of work in the 12 years I've known him, once for a tooth ache and once for a sprained muscle in his back. Get the picture. When I first got BEB and was so distraught and feeling guilty because I couldn't work, he told me I had helped so many people in my life that if I never worked another day I had done my share. But occasionally I get the feeling that he never realized that I might not find something that would get me to the point I could do something some day. Just the other day he made the comment that I was so creative and talented that maybe I needed to give some thought as to what was my purpose and gift I could give the world that could bring in more income than my SSD. OUCH!!!! It hurt...it made me angry...it made me cry. The conversion van has given me more mobility, but this week was not a good eye week for driving without a struggle, even in the van. My fibromyalgia has also been much worse this summer. I try not to complain and because of his hours of working nights, we don't have a lot of time together and even he has no idea what I go through to get through the day. I haven't felt creative and and talented enough to force my body and eyes to do what they can not do. I have been spending more time with my daughter, grand daughter, Mom and Dad, and my son. So I haven't had a lot of time to be more than a happy mom, daughter, wife, homemaker, and gardener. Being all those things and just being able to cope is a full time job for me. I would love to be able to someday work again for money, but I'm not there yet. I guess that comment and attitude that I really could be tougher and work again has been the worst I've had to "get over" in a long time. I told him my self worth had nothing to do with what I could do for money. My purpose was to love and try to help others, which I did on a daily basis. I felt blessed that I had SSD and LTD and as much as I would gladly like to find a cure for BEB & FMS, in an odd way it had blessed me with time to give of myself to my family and BEB friends in ways I couldn't have if I was still working full time as I had most all my life. Long story Shirley....but you know me....I'm talkative...wordy....and worthy no matter what...we all are.



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Re: Choice Comments/this one is long!/shirley and delaine

Re : Re: Choice Comments/this one is long! --- Delaine Inman
Posted by kathy , Aug 11,2001,17:03 Top of Thread Archive
i have to butt in here because i have felt all of these feelings too after a misguided comment from someone like the ones you are mentioning. i have been reassured many times by the words from my doctor and also one support group that i attended. don't let anyone tell you that this is all in your head; it is a physical not a mental problem , AND people that don't have BEB just can't understand it because they don't have it. period. we all unfortunately know how debilitating this neurological disorder is on both our bodies and minds. everytime i attempt too much i get worse. just tell them to back off for awhile and ask them if they would like to trade places with you, even for one bad day.



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Re: Choice Comments/this one is long!/shirley and delaine

Re : Re: Choice Comments/this one is long!/shirley and delaine --- kathy
Posted by Shirley-Arkansas-USA , Aug 11,2001,17:34 Top of Thread Archive
Thanks Kathy,
I thought about having this topic titled "BitchFest" but decided that was inappropriate. (Don't you just love the way I weasel these things in?) I just needed to let off some steam. I was due as I was beginning to find it difficult to be nice to people. I'm feeling much better now that I have vented a little. Sometimes we need to. None of us have got a perfect life out there. (Possibly Virginia :-) ) OOPS. I better be nice as we will be lunching together soon. It really isn't fair, though, that I've had more itching and tearing than she did post-op.
It would be nice to "share" (trade places) this disorder every now and then with a few select people-just for a day-so that they could have a little glimpse of it. I wouldn't wish this on anyone, though. There are lots of debilitating things out there that people are having to deal with and this has certainly given me insight into chronic illnesses and what people do go through. I'm just glad that we have a place to go and let off steam and someone else understands why it is necessary to do so.

Shirley in AR.who is missing her figs.




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Re: "Missing her figs"

Re : Re: Choice Comments/this one is long!/shirley and delaine --- Shirley-Arkansas-USA
Posted by Sally - in - Idaho , Aug 11,2001,21:38 Top of Thread Archive
Where did those figs go, Shirl? Did they run away from home?? We'll put out an APB.

Sally




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Re: "Missing her figs"

Re : Re: "Missing her figs" --- Sally - in - Idaho
Posted by Shirley-Arkansas-USA , Aug 11,2001,22:01 Top of Thread Archive
Forget the APB. They are just gone. I watch them as tiny little green things and keep my fig tree well watered and they get bigger and start to ripen and then it's just me and the birds fighting over the choicest fruit. If the birds would just go ahead and take a whole fig it would be one thing but they have to go around tasting them all. My Yorkie even scavenges around under the tree in case any fell off that he can grab.
They ripen and can be picked for about 2 weeks and then they are gone. Over-done-figs no more. I just have to wait until next year.

It is so very sad. :-((
Thanks for offering to put out an APB on them.

Shirley in AR. mourning the end of the fig harvest season




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Re: lunch in Scottsdale

Re : Re: Choice Comments/this one is long!/shirley and delaine --- Shirley-Arkansas-USA
Posted by Virginia , Aug 11,2001,21:48 Top of Thread Archive
Carl can give you the other side of the story next weekend. I'm sure it's far from perfect from his viewpoint. As for me, who can trust the "viewpoint" of someone whose eyes shut and who wears rose-colored glasses? Y'all have to remember that I had breast cancer and, though it was easily taken care of, it still left me with an appreciation for waking up each day - even if my eyes won't stay open. I try to make the best of it and, yes, Carl makes it easier - as do all of you.

Virginia in AL, who can't count the times she read Pollyanna.




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Re: lunch in Scottsdale

Re : Re: lunch in Scottsdale --- Virginia
Posted by Shirley-Arkansas-USA , Aug 11,2001,22:11 Top of Thread Archive
Hi Virginia,
I just had to pick on you a little. You can get me back whenever you like. If you and Dee gang up on me at the same time, I'm in deep trouble, though, and Roy and James would lean back and encourage both of you.
Carl is a really great guy and I think that you are pretty special, too.

Shirley in AR.




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Re: Choice Comments/this one is long!/shirley and delaine

Re : Re: Choice Comments/this one is long!/shirley and delaine --- kathy
Posted by Evelyn , Aug 12,2001,16:05 Top of Thread Archive
Kathy, I don't have BEB, and I haven't been through what you experience each day, but I've had enough other problems, that I can really sympathize with each of you. In fact, I hurt when I hear about the bad days and the comments that people sometimes make unknowingly. I find that sometimes the people who should be the most sensative and caring can be the cruelist. We all have our bad days. This morning I was having a hard time with changing out my new insulin pump. I was extremely nervous, since it was the first time for me to change it out without the instructor present. I finally got it done, with my hubby's help. I told him that sometimes I feel like all there is to life is trying to control my illnesses and poking my fingers to check my blood sugar levels. So we all have our days of venting.
Evelyn



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Re: Evelyn-how is your pump?

Re : Re: Choice Comments/this one is long!/shirley and delaine --- Evelyn
Posted by Kelly Saffell , Aug 13,2001,20:38 Top of Thread Archive
How are you doing with your pump? I'm sure this is quite an adjustment to you. Morgan's friend on the insulin pump has had diabetes since she was 2. Her mom has come to school every day at lunch to check her sugar before she eats. Her 6th birthday is tomorrow and she had to have more blood work last week because they now think her thyroid is out of wack. Have you thyroid problems related to diabetes? Just curious. She seem so young for that. Getting to know Sara has made me realize what a difficult illness diabetes is and my heart goes out to you. I am hoping there will be some type of diagetes walk soon so that I can participate with Morgan so she can do something to help her best friend and so many others.

Kelly in Dallas




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Re: Evelyn-how is your pump?

Re : Re: Evelyn-how is your pump? --- Kelly Saffell
Posted by kathy , Aug 14,2001,07:18 Top of Thread Archive
how about this new insulin that you inhale? or these new drugs that supposedly control diabetes? are these only for certain types of diabetes?



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Re: Choice Comments/this one is long!/evelyn

Re : Re: Choice Comments/this one is long!/shirley and delaine --- Evelyn
Posted by kathy , Aug 14,2001,07:15 Top of Thread Archive
i know evelyn! i live in fear of my eyes getting bad every day, am actually amazed when they are fine for any length of time but know it's only temporary, and then there are injections. i will have to say that the women in my church circle have for the most part been pretty supportive of me. i gave an informational talk to them and passed out brochures to them. that was not easy for me as i have a fear of public speaking that almost made me say forget it.



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Re: Why Worry? Be Happy even though.

Re : Re: Choice Comments/this one is long!/evelyn --- kathy
Posted by Delaine Inman , Aug 15,2001,12:05 Top of Thread Archive
We all have our moments of fear, but if we allow ourselves to live in fear or worry ourselves black and blue all we accomplish is being black and blue. Worry is harmful to your health and your BEB in particular. Worry can only make it worse and your life more miserable. Who needs that? The Serenity Prayer works for me or just remembering how useless and harmful worry is about any situation. What ever happens you can handle it...we all can. So why waste your precious energy and moments in life worrying every day. If you must do it, set aside a few minutes before you get up and then make the choice not to do it. That is what Christopher Reeves and Morrie from Tuesdays with Morrie did and he had ALS. They are and were a blessing and inspiration to people and we can be too. That's not Pollyanna, that's just gutsy and courageous. We all have it in us. Happiness is a choice from within and not based on our situations or circumstances. Not always easy, but practice helps, support helps, venting helps...lots of things can help.

--modified by Delaine Inman at Wed, Aug 15, 2001, 12:10:18

--modified by Delaine Inman at Wed, Aug 15, 2001, 12:14:13




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Re: Why Worry? Be Happy even though.

Re : Re: Why Worry? Be Happy even though. --- Delaine Inman
Posted by kathy , Aug 15,2001,14:23 Top of Thread Archive
thanks for you words of encouragement, i need them now. my eyes are better and my back is better but it shakes me up so when they are bad.



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Re: Why Worry? Be Happy even though.

Re : Re: Why Worry? Be Happy even though. --- kathy
Posted by Ann Doyle , Aug 15,2001,16:10 Top of Thread Archive
Abraham Lincoln said "a man is as happy as he chooses to be." But I know that some days it is a lot easier to be happy than other days.
Another saying is;" If you pray,why worry? and if you worry,why pray?"



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Re: Why Worry? Be Happy even though.

Re : Re: Why Worry? Be Happy even though. --- Delaine Inman
Posted by Christel-California , Aug 15,2001,19:07 Top of Thread Archive
Delaine,

Thanks for your inspirational message. Being a professional worrier, I need this kind of shot in the arm occasionally. There are so many aspects of ones life that one can worry about --- AND I DO !

I have an inclination to worry about things that haven't happen yet and perhaps never will and it drives up my anxiety level. Of course I know that worry accomplishes absolutely nothing nor changes anything and I've tried to change, but as you said, it's not always easy, so I will have to practice harder.

Christel melting in the Ca. desert




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Re: Why Worry? Be Happy even though.

Re : Re: Why Worry? Be Happy even though. --- Delaine Inman
Posted by MaryNY (Mary,MaryNY), Aug 15,2001,19:34 Top of Thread Archive
Delaine...You sound just like my husband! and he is my "rock". Your words are well put. Even tho I may have had an inclination to get BEB, I KNOW that a long period of worry and anxiety led to my diagnosis (which took about 8 years, and 10 drs.) And Ann's words are going into my "treasure box"..If you pray, why worry? and if you worry, why pray? So glad that so many of you come up with perfect answers! Mary



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Re: Choice Comments

Re : Choice Comments --- Shirley-Arkansas-USA
Posted by Joann Humphrey , Aug 11,2001,10:55 Top of Thread Archive
I don't want to be pitied either. When they say 'how are you'. I say, "I feel fine, I just have trouble keeping my eyes open." I tell them I've accepted it & wish they would too. It's not easy, even my husband is slow accepting it. I do pray for the Lord's help to keep up my spirits, & His guidance. We have the conference to look forward & have to keep thinking positive. Looking forward to meeting you & many others next weekend. Joann in Ft Smith.



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Re: Choice Comments

Re : Re: Choice Comments --- Joann Humphrey
Posted by joyce whitt/NC (Joyce Whitt,joyce whitt/NC), Aug 11,2001,12:01 Top of Thread Archive
I just had to add my two cents worth. Our husbands should be our biggest supporters but it seems they are not. My husband tells me "think positive" that will open your eyes. "Don't let it bother you". It is always easier to give advice than to take it. Sometimes I have wished for him to experience something like this just so he will understand. He still expects me to get up and fix his breakfast even when my eyes slam shut as soon as I get up and he always wants different things that require "watching". I have even thought about just staying in bed one morning and tell him to fix his own but then I think of the "mess" he would create and I would have to clean up, it's just easier to get up and do it. We have been married 47 years and I have spoiled him.

Even people at church don't understand even tho I have patiently tried to educate them. I try not to talk about it except to say, today is a good day, my eys are open or to say not a good day, it's hard to get my eyes open. I had one of our more "spiritual" ladies ask me "how I was doing". I was in the process of telling her "today was not a good day but yesterday was." My eyes were shut when I started to talk and by the time I got them open, she had moved on. That hurt me because if your "sisters in Christ" can't listen or show any caring what is the use of asking them to prays for you. Since then when asked, I say I am just fine, even if I am struggling and having a bad eye day.

Even my own son, who is a devout Christian tells me that if I had enough faith I would be healed. he has Hepatitis C and he believe God has healed him but he continues to go to the doctor and takes treatment for it. That really hurts. I believe God can and will heal me but in His time. I believe it takes more faith to live every day with an disorder like this and still praise and honor Him than if He would suddenly heal me. People would soon forget the healing but to watch a person live every day with an illness or disorder or whatever that is Faith in action.

Well thats my soap stand. I had surgery as Shirley told you and I will share those experience in a different post.

Joyce in NC where the weather is hot and sunny with maybe a stray afternoon thunder shower which seem to miss us everytime.




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Re: Choice Comments

Re : Re: Choice Comments --- joyce whitt/NC
Posted by Virginia , Aug 11,2001,13:39 Top of Thread Archive
Glad you popped in to add your two cents worth and look forward to the post on your surgery. Hope you are getting some help from it.

You have indeed spoiled your husband. Mine fixes his own breakfast and cleans up the mess every morning and has ever since we got married almost 27 years ago. He's an early riser and wants to eat immediately, whereas I'm slow getting started and don't even want to smell food until I've been up a while.

He has also been a tremendous support the last several years. He's given up on asking me when I'm going back to work. He does forget from time to time and ask me to run errands for him, since I still drive. I just tell him that I will do it if he's not in a hurry, since I never know how I will feel. If that's okay with him, I'll do it - if not he does it himself. He's the only one I've really let see how much BEB/Meige has affected me. I don't know how I would manage without him.

I know people expected the surgery to "cure" me, even though I tried to tell them it would just (if I was lucky) improve the condition. When they ask how I am, I usually say "okay." I have explained to those who ask or need to know, but I try to keep it simple - I'm sure they don't want the whole story. That's one reason this BB works for me - being able to share with people who understand is a great outlet.

Virginia in AL, where the rain has finally let up and hubby is trying to get the grass mowed before we leave for the conference.




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Fear

Re : Re: Choice Comments --- Virginia
Posted by Jaelline Jaffe , Aug 14,2001,03:48 Top of Thread Archive
OK folks, I have to confess to a big fear that is suddenly coming on here ... and I am embarrassed to even say this, but here goes. I am coming to this conference with my "sweetie." This is a relationship of less than six months, but has felt like IT since the beginning. (I've been divorced forever and when BEB hit, I stopped dating and practically went into seclusion, only seeing people who knew me "before.") He has been very accepting of my "eye thing" and has heard how bad my first year was (before botox) when I could hardly drive, had no energy (chronic fatigue syndrome, candida, whatever), etc. But I am very fortunate that I can still work. As a psychotherapist, it is difficult to have to prop my eye open to make eye contact, but hey ... if I'd been a traveling salesperson or medical doctor or anything else requiring sustained vision, I would be out on disability, as I know many of you are. My friends have been very helpful driving me, especially at night, with apparent sympathy and acceptance. But no one (not like the husband lucky Virginia mentioned) really sees how much this has affected me - people have seen bits and pieces, but when I come home and shut the door, I feel relief to be on my own where I don't have to "act ok" for anyone.

So here's the fear: my guy will come to this conference and see how much worse I might become (meige, on disability, etc). And instead of him just learning more about this disorder, he will get scared off. Given who he is, this is probably an irrational fear (and now that I realize it's there, I will talk about it with him before we get there). WHEW! This thread about "choice comments" led me to this realization, so thanks for sharing.




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Re: Fear

Re : Fear --- Jaelline Jaffe
Posted by kathy , Aug 14,2001,07:23 Top of Thread Archive
jaelline, my boyfriend was also going to come with me to the conference before i made the decision that it would be too stressful for me to go, but the same thoughts you are going thru also entered my mind, like he would think , "my gosh, what am i getting into here?" i don't think think they would be able to handle the progressive part of our disorder.
i myself am having a hard time thinking about this.

--modified by kathy at Tue, Aug 14, 2001, 07:24:44




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Re: Fear

Re : Fear --- Jaelline Jaffe
Posted by Virginia , Aug 14,2001,09:08 Top of Thread Archive
Glad you talked yourself through that one. I can sympathize with your thinking - I once had a boyfriend dump me because he was afraid I would turn out like my mother (a long time ago and no doubt for the best). You may be taking a risk, but he will hear that the disorder affects us all differently and no one knows how it will progress. He will see people who are doing well with it along with those who are having problems. I know it helped Carl understand more by meeting others with our condition last year at the conference and by hearing from the doctors about research and treatment options. Chances are our partners and family members seldom meet others else with our condition and this is a good opportunity for them to do that. We'll try not to scare him off. ;-) I used to try to put up a good front for everyone (husband, too), but during the few months after my lumpectomy, I just couldn't. I found out then that he could take it and be supportive. It's nice to have one person that I don't have to fake it for.

Lucky Virginia in AL




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Re: Fear

Re : Fear --- Jaelline Jaffe
Posted by Shirley-Arkansas-USA , Aug 14,2001,11:21 Top of Thread Archive
Jaelline,
I'm glad that you said something. I know that a boyfriend is very different than a husband but he IS coming with you. That in itself tells you a lot. If he is the person for you, this conference will not scare him off. It will give him a deeper understanding of what you are going through. He will also see how different people are coping with this and how it effects them and their spouses. He may see some that are worse or have progressed in this to other forms of dystonia.
He will see very strong people who are trying to learn and better their lives. I was scared last year when I first got there but then I just saw many others like me (some better, some worse). There is indeed humor at the conference and empathy. He will learn of the options that you have for treatment and the research that is being done. He will see a lot of love there among spouses. It was a happy time for me last year and I expect it to be better this year as I already know some of the people-ones that I met last year and those that I just know through the bb. It is a time of sharing. Share it with him.
If Dr. Anderson is true to form, he will have everybody in stitches that attend his talk Friday evening. There are four different sessions going on at the same time Friday evening. One of them is for spouses and friends. I hate to play favorites, but Dr. Anderson's group will be where my family will be and he will have us laughing our heads off. Have you done much of that lately? Go with an open mind and heart and expect to have it filled.
If your sweetie is much of a man, this conference will not scare him away. I think that you answered your own question about this when you said that it was an "irrational fear". Do your talk and don't worry. It will be fine.

Shirley in AR.




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Re: Fear

Re : Fear --- Jaelline Jaffe
Posted by grace anne , Aug 14,2001,12:16 Top of Thread Archive
Jaelline (what a pretty name), what you wrote brought back memories of similar in my life. I met my husband in March 1992. This wasn't a head over heels relationship; just friends. By Nov of 1992 I required emergency corneal surgery in Tacoma which is a good distance from me. Without even asking, he risked his job (and was later laid off) by taking every afternoon off to take me back to the doctor for evaluation, dressings changed, etc. My eye was supposed to heal in a week but problems extended it to 3 months. It seemed forever. He was there every minute I needed help. I never thought of the fear of losing him. Maybe I was so wrapped up in my eye problem to even consider it. But that man has stayed with me through all kinds of thick and thin and ups and downs. If your guy wants to go with you, let it happen. And try to let it happen without too much fear. I'm not a real religious person, but I do believe that God can work in mysterious ways, and that includes relationships. Maybe the two of you going there together will be the "glue" of your future. Good luck. I'll be interested in hearing a follow-up.

graceanne in port orchard




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Re: Fear

Re : Fear --- Jaelline Jaffe
Posted by Jaelline Jaffe , Aug 16,2001,22:55 Top of Thread Archive
Thanks, all, for your replies. After I wrote my note to you, the next day I sent him a long email and then we had an even longer phone call that night. Just another reminder of how very lucky I am to have found such a wonderful soulmate - he said all the right things! Part of the good stuff is that since he did not know me before beb, he wasn't in love with "her" but with the "me" he does know, and that he loves who I am, who happens to reside in this "earth body." I did actually raise his anxiety a bit by having this discussion, b/c it had actually never occurred to him that my condition might deteriorate further. It happened that the night I was writing to you all, he was out to dinner with an old friend who asked him why we had taken horses on what should have been a backpacking trip. He explained that I have a hard time keeping my eyes open and that makes it hard to hike. The friend said, "Well, it IS temporary, isn't it?" and Shel realized then that he actually had never assumed it would be any different.
Anyway, he IS coming (driving me) and is looking forward to the conference. Thanks again, and see you all soon.



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Re: Welcome Back Joyce

Re : Re: Choice Comments --- joyce whitt/NC
Posted by Shirley-Arkansas-USA , Aug 11,2001,17:44 Top of Thread Archive
Hi Joyce,
Welcome back. I was glad to see your post. You will need to tell us all about your surgery. I'm sure that many are interested. Don't push yourself too hard. Glad that you were able to vent a little, too.

Shirley in AR.




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Re: Choice Comments

Re : Re: Choice Comments --- joyce whitt/NC
Posted by Sally - in - Idaho , Aug 11,2001,21:46 Top of Thread Archive
My husband of 47 years is in the same spoiled rotten shape!! Maybe it's a thing of our generation, Joyce. He is a good person, but really no support as he does not believe in being sick (like Delaine's husband) is a stoic with pain and is a grit your teeth and bear it person. I am the opposite. If I hurt, I hurt. However, I do believe that I have a much weaker immune system as I've always been getting "something."

I have a similar scenario when I go to church. The first thing anyone asks is how are my eyes. I just say, good days and bad days and change the subject. Someone is always asking if the shots "cured me this time." Oh how I wish!!

I've found it is easier to plead a headache if I must leave a gathering, and that's usually true from the fluorescent lighting anyway. My conclusion is that most people really don't want to have an extended answer.

Sally in sweltering North Idaho




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Re: Choice Comments/joyce

Re : Re: Choice Comments --- joyce whitt/NC
Posted by kathy , Aug 14,2001,07:28 Top of Thread Archive
joyce, i know that fast food is not particularly good for you, but sometimes he "cooks" this way for us. do you have any of those places close to you, where your husband could run out and get meals for you and himself, on occasion?



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Re: Choice Comments/joyce

Re : Re: Choice Comments/joyce --- kathy
Posted by joyce Whitt/NC (Joyce Whitt,joyce Whitt/NC), Aug 14,2001,15:13 Top of Thread Archive
You are right Kathy, we have several fast food places near us but we try not to use them. My husband has an irregular heart beat and he takes 4 different kinds of medicine for it and "that" kind of food is not good for him. However we do eat breakfast out either on Friday or Saturday and we always go out to eat on Saturday evenings.

I have no trouble fixing supper each day, it's just in the morning and especialy since I had this surgery it takes longer to get my eyes going. I have to use hot/warm compresses on them just to get them open.

We all have our personal hang-up and I have mine. Growing up was not easy. My mother did not treat my father like I thought he should be treated, I won't go into details. I told my self even then that when I did marry I would take better care of my husband. I have created my own monster. Just so you don't all think that he does nothing for me he does help me some, like folding up clothes, with my help of course and he has helped "pair up" his dark socks because he knows It is hard for me to tell the right colors. I am slowly training him but I refuse to be a nag or at least try not to be one.

Joyce in NC who really wanted to go to the convention but my eye surgery prevented it. I am going to visit my cousin in Utah approx Sept. 17. I will fly into Salt Lake City and then we will drive 4 hours to where she lives in Teasdale. If anyone lives in Salt Lake City or the surrounding area let me know. Maybe I can look you up.




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Re: Choice Comments/joyce

Re : Re: Choice Comments/joyce --- joyce Whitt/NC
Posted by kathy , Aug 15,2001,09:26 Top of Thread Archive
no i didn't think he was not doing anything for you, just wanted to make a suggestion. i'm sure men have different ways of helping and cooking is not probably one of their most favorite things to do.



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Re: Choice Comments

Re : Choice Comments --- Shirley-Arkansas-USA
Posted by grace anne , Aug 11,2001,14:03 Top of Thread Archive
Hi Shirley and all. I've been told the following:
"If you'd take those dark glasses off, maybe you could see something."
"Can you see that...oh, no, you can't see anything with those dark glasses"

Then I get the following scenario: I take walks around the parking lot at the Eagles where we are members. A friend goes with me, which is nice, and she ALWAYS interrupts what we're talking about to say "Now here's a speed bump". Every time I tell her "my cane knows the speed bumps; you don't have to tell me." Or I hear from others - "let me help you" to which I respond "You can walk with me, but I can do it on my own".

So it's either feast or famine; either no understanding or too much help.
I've also had people (especially my mother) say they will/are praying for a miracle for my eyes to heal. "I always pray to St. Lucy, the patron of eyes", she would say. I tell these people pretty much the following:
Please don't pray for a miracle for my eyes. If you're going to pray, pray that I can accept and learn to live with what God, for some reason, saw fit to give me. I never ask that He take it away; only that He will help me learn how to live with it and help me to continue to find ways to continue doing things.
People just don't understand, do they? Trust me, I'm not against prayers. I just believe that whatever you are sent that you didn't ask for, you got it for a reason, so take them damn lemons and make lemonade!

graceanne in Port Orchard




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Re: Choice Comments

Re : Re: Choice Comments --- grace anne
Posted by Sally - in - Idaho , Aug 11,2001,21:50 Top of Thread Archive
Well spoken, Grace Anne. I'm happy to see you posting again.

Even worse (to me) than being told to take off the dark glasses, is someone (usually my mother) running to turn on ceiling lights that look and feel like baseball diamond lights, "so that you can see better ... you can't possibly see in the dark ... you'll ruin your eyes." Thanks a bunch, as I grab my head and cover my eyes with a towel or whatever is handy.

Take care. I'm glad you have someone to help you go walking.

Sally in North Idaho




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Re: cane knows where the speed bumps r

Re : Re: Choice Comments --- grace anne
Posted by becca , Aug 12,2001,15:07 Top of Thread Archive
Grace Ann, what kind of cane do you have. I have gotten so out of shape, I use to walk alot . know I just walk around my house. I think a stick with wheels might help. I don't like walking with others that was time to think. tell me about your cane. becca



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Re: Choice Comments

Re : Choice Comments --- Shirley-Arkansas-USA
Posted by Kelly Saffell , Aug 11,2001,15:06 Top of Thread Archive
Several years ago my husband and I were doing research, interviewing doctors, etc. trying to decide if I could have botox during pregnancy. This was an extremely emotional time for me. Without the botox I knew I could not get pregnant again and I was angry that "this" might take away my "family of 4" along with everything else I had already lost. My best friend of 20 years asked me "If you know you have to go without the botox during your pregnancy, don't you think if you mentally prepared yourself you would be fine?" I politely responded "If this were all in my head I would but since it's not I think I would probably be suicidal just like I was before botox." Probably not the right response but I felt about 2 feet tall right about then!

Kelly in Dallas where, sadly enough, she is no longer my best friend.




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Re: Choice Comments

Re : Choice Comments --- Shirley-Arkansas-USA
Posted by Ann Doyle , Aug 11,2001,15:39 Top of Thread Archive
Shiley, I would like to tell your mom-in-law that perhaphs she should pray for patience. That way you'll probably never see her again.
Joyce, What other post?
Virginia, I have bleph and Meige also. What surgery did you have and are you happy with it and what did it do?
Ann in KY



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Re: Choice Comments

Re : Re: Choice Comments --- Ann Doyle
Posted by Virginia , Aug 11,2001,16:27 Top of Thread Archive
Ann,
I had an upper eyelid partial myectomy last November. It has helped, although I still get botox every two months. The Meige is more of a problem for me than my eyes now. I have tightness in my neck and jaws and trouble breathing sometimes (diagnosed as spasms in my diaphragm). I have an appointment for botox at the end of August and will get botox in my neck and jaws to see if it helps.
Virginia in AL



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Re: Choice Comments

Re : Choice Comments --- Shirley-Arkansas-USA
Posted by Joanne Matuzas , Aug 11,2001,19:09 Top of Thread Archive
This subject has really hit home for me. Delaine's explanation of her
husband's comment re SSA income, Virginia's comment about folks not really wanting to hear the whole story, GraceAnne's belief about learning to accept what we have and living with it, JoAnn's comment about having the Lord's help, and the rest of the posts as well. At least we understand what each other is experiencing even if it is on different levels. That in itself is so uplifting for me I can't even begin to explain it.

As most of you know, I have the blephs, breathing dystonia and now the
meige is worsening. My time on the job is numbered and I am accepting that. Just yesterday, I was at my desk and just broke down crying--went to the bathroom and felt a bit better afterward but the frustration of this disorder just hit again. Then today, I had a rather long day planned. Went to the hairdresser in the am and the spasms were kicking up so I couldn't quite relax there as I like to. Met some friends for
lunch which was ok. They all wanted to do something this afternoon but I had to come home and rest. You all know what that's like. Now I am sharing with all of you on the bb and tonight I hope to visit a friend of mine for an hour or two who recently broke her leg. She is in good spirits partly because she knows it a matter of time it will be over. I am not complaining but as blephs we do not have that luxury unless we fall into the 10% category of those who go into remission.

So I press on, rely on God and never give up. Tomorrow is a new day. You have all helped me so much I thank you again. I'm getting all emotional so I'll say see you later. Love you all....Joanne M. San Diego, CA




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Re: Choice Comments

Re : Re: Choice Comments --- Joanne Matuzas
Posted by colleen , Aug 11,2001,20:42 Top of Thread Archive
I think getting on a tear is good for me sometime.I hear getit off your mind wish i couldbut when it is with you every day& most of the night it is hard to do.Its all in your mind,i thought you took shots for it like that was the end of it.The one i hate the most is you look
good like there couldnot be any thing wrong with you .that it must be all in your head.
I pray for courage to deal with this disorder& try to stay cool& not tEll some people what i think of them.
Colleen in IL



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Re: Choice Comments

Re : Choice Comments --- Shirley-Arkansas-USA
Posted by June in Toronto (June Floyd,June in Toronto), Aug 12,2001,10:36 Top of Thread Archive
I attend an Anglican Church - the new minister had previously worked in a hospital lab and had asked why I wore dark glasses in church. His wife (super lady) is a nurse and they both showed interest (I thought) in beb. I gave them pamphlets and information on the subject and even invited them to a Dystonia support group information session - given by 2 local doctors (they didn't attend).

Two years ago during the Christmas sason, I had to leave the service early bcause of flashing lights on the tree (a first in all the year's I've been attending church) and a faulty flashing light on the pulpit - combined with the overhead lights, it was so painful to me. The next time he saw me the Minister asked why I had left early - I explained and he said "well I should put strobe lights on the pulpit"! He obviously had not read the Dystonia information or understand anything about beb. His comments really hurt me. I explained again and followed up the following year asking to help decorate the church so as not to have flashing lights.

The Minister has said a number of other hurtful comments and I've told him and written to him, about them. I believe he is basically a nice man, just shoots off his mouth without thinking (strange in his profession) on occasion. Friends ask why I don't change churches but, after all the training I've given the man, I think I'll stay where I am:-)

June in Toronto who hasn't been posting much for months - been going through a feel-sorry-for myself time and will perhaps address about that subject under a new heading!

--modified by June in Toronto at Sun, Aug 12, 2001, 10:37:10




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Re: It's Venting time

Re : Re: Choice Comments --- June in Toronto
Posted by Shirley-Arkansas-USA , Aug 12,2001,21:41 Top of Thread Archive
Let's hear it June. I've missed you. I think that we are all doing a little venting right now so have at it, girl. It won't hurt and it might help.

Shirley who has been venting a lot lately.




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Re: Choice Comments/june

Re : Re: Choice Comments --- June in Toronto
Posted by kathy , Aug 14,2001,07:08 Top of Thread Archive
i'm with you june. it's almost impossible to not feel sorry for ourselves a lot of the time. anyone who feels otherwise is probably playing a Pollyanna role.



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