Re: Support ...
I think information is the # 1 purpose of a support group be it the BB or our own local Support groups. I think # 2 would be acceptance, no matter what our questions are we should expect someone to answer it and answer it quickly without criticism. (I am not sure that is worded correctly but I think you get what I mean.) #3 should be encouragement. We are all at different stages. Somedays I might need just some one to cheer me up, particularly if I am having a bad day and ALL of us at one time or another has a bad day. We can give encouraging help, maybe a laugh or two. A lot of us cannot get out and go whenever we want to and that can/will cause depression. Some of the group have other health concerns and they should be allowed to voice their concerns about that. In our local support groups we have the added advantage of seeing each other face to face and we can see what their needs are. Usually a speaker is provided who can give up information and we can ask questins. To me the BB has provided me with a wide network of friends, who are at times family. They understand us in a way that no member of our family can. They hurt when I hurt and probably cry from just the sheer frustration of not being able to help because this dis-ease can get to you no matter how much we say we are overcoming it. We take it one day at a time and just getting through that day is a victory. I am glad that I have a place to go and just draw strength from others who post. I might not post very often but I can always count on you to help me whenever I do post. Joyce in NC who has been very depressed for the last several weeks but just reading the BB has helped me laught. I go to the doctor tomorrow and I am going to try the Botox one more time. Since I have had the surgery the under eye spasms are worse and I am no better off because the bottom lids squeeze up and close my eyes and I am still involved in the same old fight/battle/struggle to keep my eyes open. But I will survive and I will go on. Just don't change the BB.
Re: Support ...
Joyce, you said it so well and so eloquently, that I cannot add to your words ... merely second what you have said.For the past couple of weeks, I've been dealing with another health annoyance that is fighting with the BEB for position as top dog among my irritations in life. Between the two of them, life has been quite stressful and very depressing. I just had a phone call from one of the teachers I used to work with, telling me that the U.S. has bombed some terrorists. Then she went on to tell me that one of the girls I had known since middle school had attempted suicide and another one's father had succeeded at suicide. So many of our young people have horrendous things hapening in their lives that must be dealt with. I think I am glad to be out of the school system and not sharing in all their traumas. Sally in North Idaho who is not very up beat today.
Re: Support ...
Thank you Joyce for saying everything I would have liked to have said and even thought of somethings that were truly great that I never would have thought of on my own. Congratulations girl. You said it all and very well. AnnDoyle
Re: Support ...
Sept 13, my grandson was murdered and it seemed like there was already too much sadness going on the bulletin board. Since then things have gotten worse. My son, an uncle of the boy hates the police because he doesn't think they are doing enough. My daughter who is going through menopause and has always had mental difficulties, went off her meds, quite her job and disappeared after running up bills of $20,000. I am grieving and my husband has started name calling saying that I am pessimistic. My botox shot didn't work this time.
Now here is the question. I haven't been on this bb long enough to make a special friend. Do I e-mail Joyce who already feels bad but may understand. Do I hold it in and act as if everything is alright.? I start to tell people (aquaintences and friends) and they get that glazed look in their eyes and you can tell they aren't listening or don't want to hear. The family already feels too bad. Usually I am up beat and the class clown but I can't think of anything funny to say. Is it acceptable to write like this on the bb?
I don't like being serious. I enjoy making people laugh. I just don't like me right now. I know that things will get better. They always do and I always learn a valuable lesson and become a stronger person. I just don't like living through this. Ann Doyle
Re: Support .../Ann Doyle
Dear Ann,I am sorry to hear about all your difficulties. You've come to the right place. It seems that we who have BEB are stressed enough and anything that adds to that stress seems monumental. I will be praying for you and your family. You can e-mail me if you want to and we can "talk". Please know that all of us here are your "special friends". Dee in OR who cares about you Ann
--modified by Dee in OR at Sun, Oct 07, 2001, 18:16:33
Re: Support ...
Ann, it certainly is ok to write about your troubles (other than beb) on this bb. We don't have to always write something funny - its ok to be very serious when life gets us down. I'm so sorry about all your trials and tribulations and I pray for you and your family that things will get better for you soon. God Bless.June in Toronto
Re: Support ...
Ann,
I don't think there is anything to compare with what you feel when family members are hurting. It is understandable that you are grieving. Yes, the bb is an appropriate place to go for support. I'd rather joke around, too, but I haven't felt much like that either. Please feel free to share here or email me if you want. I don't know that I can help, but I can "listen".
Virginia in AL
Re: Support ...
I am so sorry for the tremendous burdens that life has thrown your way. I feel that the bb is here to support not only our difficulties in coping with our illness but also with life in general. We have become "friends" and as such we care about all aspects of each others lives. When my dog died the stress took such a toll on my body that it took me 2 months to physically recover so I can't imagine what this has done to you both physically and emotionally. Please know that we are here and we care whether you make us laugh or not.Kelly in Dallas
Re: Support ...
I understand the dog problem. When my dog of 17 years died,, I was devistated. I "borrowed" a neighbor's dog until I could find another one. Tahnk you Kelly. Ann
Re: Support ...
Hi Ann,
You can talk about anything you want to here. We laugh here and we cry here. You are having a really difficult time right now and you can vent anytime you need or want to. You can be class clown later.
Joyce is a wonderful person and I think that if you feel comfortable emailing her that she would be there for you. I know that she would.
There are many wonderful people on this board.You'll get through this, like you said, and will be stronger. I think that you will find the longer you hang around here, that you will have many friends and offers of support. You know that I get off the BEB subject every chance I get and you can too. We're always here for you and we try to be optimistic. Hang in there. Shirley in AR.
Re: Support ...
Thank you Shirley. I feel like I know your already from all your post. I think of you as the mother hen of the program who like the rest of us sometimes gets down. Make you more human. Ann
Re: Support ...
Ann, I tend to bare my soul for all to see. It is sometimes not pretty but since I left home, I've had a difficult time keeping my opinions to myself. I am pretty much what you see (or read). Just ask Virginia.
I figure some people are going to like me and some not.
Ann, you say that you are fairly new to this bulletin board and haven't made any special friends. That will come. I have met some of the people on the bb at the two conferences that I have attended and I guess that I do feel a little closer to them than to some others that I haven't met. But it is not actually a matter of meeting people in person, either, that makes me feel comfortable with certain ones. I have several very special friends that I email that I have never met and I feel just as close to them as if I had met them. Over the years, you just get to know people and know who to tease and who doesn't take it quite as well. When you read the bb every day and especially if you post and participate, you can't help but get to know some of us.
We've been through a lot together and share a lot of things and you are a part of this. This is your extended family.Shirley in AR. / Mother Hen
Re: Support ...
Dear Ann,What tragic things are happening in your life!! I would be happy to be your friend and if you'd like to e-mail me (address above) I will answer promptly and with compassion. I have been through the death of a young son, and understand the intense pain this causes. Please know that I care and will be here for you. Sally in North Idaho
Re: Support .../ann
ann, i am so sorry! your conflicting feelings are normal and you need to know about and understand the stages of grief. try to do what keeps you under emotional control, in other words be good to yourself, and then reach out to others when you need to. yes you need to talk about what's happened at times. don't internalize every thing .
Re: Support .../ann
Thank you Kathy, Dee, June , Virginia, Kelly, Shirley, and Sally. Sharing the load does make it a little lighter. I can't tell you how much you responses have meant to me. I hope I haven't forgotten anyone. Plan to e-mail Joyce next. Thank you again from the bottom of my heart to the top where all the ice cream is..cream does rise to the top. Love you all , Ann D.
Re: Support .../ann
Ann, We've been out of town, so this is the first chance I've had to read the bb. I'm so sorry that things are going badly for you..know that you're in my thoughts.
Evelyn
Re: Support ...
Ann, my heart goes out to you in the huge burden that you have and you are very high up on my prayer list. Though many of us on the board have never met, I think I can say that we will all be your special friend. These are just my opinions on your questions, but yes, you should email Joyce and any others who have included their email addresses (mine is up there too). You can write anything you need to. No, don't hold it in! Everything is NOT OK! Tell the people who will listen and understand that they needn't say anything. I don't know what to say about your husband other than name calling is never appropriate. As for you not liking yourself -- WRONG! It's OK to grieve over losses and from what you say, you have tremendous loss.
Prayers,
Cynthia in IL where I have a long prayer list.
Re: Support ...
This is unlike my husband. Patience is his best quality. I don't think he knows photo handle it. He too is sick with antiphospholipid syndrome and emphasema. He went throug a phase of being sarcastic, thinking it was funny. I told it the root word was sarcos from the Greek which meant to tear flesh. He had to be reminded several times but finally caught on. I plan to tell him I am grieving and that is different from pessimism and even if I an pessimistic for awhile that is OK. I'll be back to normal. Just give me time. This is something even chocolate and shopping can't fix. Our 3 dogs are depressed.
You can' imagine how all the letters have helped. They make life bearable. My daughter is paying on her bills.We don't know where she is but she must be working. We hope she gets back to her husband and back to group therapy. Ann
Re: Support ...
Ann, Please feel free to e-mail me, just click on my name. I think we all are going through hard times now and the world situation is a constant reminder of major changes of how we view the world. I am so sorry for you and your grandson. Life is just not fair but there is a reason things happen and we have to trust God. I wanted to post this morning and just say I was sorry that I said I was depressed - maybe "down" might be a better word. I had wanted this last surgery to work which technically it did as far as the top lids are concerned but the bottom part of my face was worse. I went to the doctor this morning and we did the Botox again (52 units. It is suppose to take two weeks before we can see any results BUT I think the lower part of my face feels better but I still have some squeezing under the eyes. that is encouraging already. I am glad we have a place to come to and just vent our anger, frustrations and know that we are accepted, loved and encouraged. You are correct, our families can't possibly know how we feel - it is not them who are going through this weird dis-ease. I appreciate everyone on this board because they have made my life just a bit easier with their wealth of information and most of all their sense of humor. Joyce in NC where today was a BEAUTIFUL Fall day, bright sunshine, crisp temperatures and the glorious colors of the leaves turning from green to scarlets, golden yellow, and browns and every conceiveable color in between.
Re: Support .../leaves
The leaves around here aren't turning all the pretty colors that they often do ... too dry, I guess. My doctor's clinic surrounds are usually a fairyland of different colors and shapes, but I noticed today that the ones that are beginning to fall are just blah. Maybe they'll get in gear and put on a show later. I hope so.Sally in North Idaho who hopes you are feeling better and more perky by now. So many ups and downs in our lives.
Re: special friend/mother hen ...
You are able to say well what you are feeling and you have a right to anything your are feeling right now. You have so much pain and grief to cope with all at once and on top of all the things going on in the world and on top of coping with this disorder. YOU HAVE FRIENDS TO CARE ABOUT YOU RIGHT HERE RIGHT NOW.... and we are here for you to listen, to cry with you, to laugh when you are ready, to say it isn't fair, to say no one should have to go through all of this at once and to tell you that some day you will feel better and you will be ok. Cyber Hugs and Chocolate Kisses to you....and you are right about Shirley...she is a Mother Hen and she keeps the chicks and chucks in line and on our toes and laughing and thinking and talking and coming back. Everyone here is special and is a special friend. Hang in there or let go, just keep talking to us. You just email anyone you want or spill your guts right here....Love and prayers to give you strength, peace and hope.Delaine in TN
Re: Support ...
Judy,I agree with Joyce and Sally. Joyce siad it so well. Information is the number one thing, a place to vent, a place to "talk" to friends and know that we are not alone, lots of friends to invite to pity parties and to help us celebrate when the occasion arises. And so on. I went to the BEB "support group" here in Portland and was really disappointed. It was mostly older people, no one from the BB, and I must say for as long as some of those folks have had BEB, they were not very saavy or informed. So I can't say enough for what this BB means to me and how helpful the folks are here. I would be "in the dark" without this BB and all of you! Dee in OR
Re: Support ...
Dee:It may be that we who reach out to the bulletin boards, Internet, etc. may be more aggressive in our approach to finding answers. My subject, by the way, was initiated because of an e-mail comment that I made to the DMRF regarding one of their support groups that I have attended periodically and always return from in a frustrated state of mind because fund raising instead of patient support was the mode of the day. People first need help, knowledge and most of all a congregation of like minded people where they can feel 'normal' for just a little while. Blepharospasm or any form of Dystonia distorts not only our bodies but also our spirit. We each are a link in a supportive chain that holds someone up. If the chain breaks either above or below us someone is lost. Your perspective is the only difference. Judy
Re: Support ...
I agree Judy. I believe that most of us on here are a more aggressive lot than some others. I'm not trying to be critical of others who might not be quite as mouthy as I am sometimes. Even the ones that just read the bb and don't post (I know that you are out there), I believe are more aggressive than others who don't look for any information. Some just go to a doctor and accept the doctor's word and treatment as the "gospel" and never question if there is anything more that could be done or if there may be another treatment option. That is not my way of doing things.
I had the same experience as Dee at the support group meetings here locally. I really didn't feel like I even belonged there. There was such a tremendous lack of knowledge and actually a lot of misinformation. I guess that I shouldn't complain as I am doing nothing to correct that situation myself. I feel like I have as much as I can handle right now.I haven't been able to post or even read much lately but am hopeful that things will get better. I know that fund raising is important, but I, like you, feel that information and support have to come first. I'm sure that money has been made through this bulletin board. We've pushed T-shirts, visors, bags, cookbooks, and just donations without cramming it down anyones throat. (I hope) It was done in a fun way-just knowledge of the items existence and talking about them. My eyes are going again so will have to get off. My dear friends, I love you all and appreciate you being there for me. I will be back. Shirley in AR. who doesn't think that she has paid for her newsletter for this year. Hmmmmmm. :-)
Re: Support .../shirley
maybe its a perk for your hard work. you deserve it!
Re: Support ...
Linda Webb is the person over the Southern states and she has spoken to my group once, calls me ever 3 to 6 months and has really let me do my own thing. I have had high praise from the folks and docs who come to the meetings. I know I can be contolling which can be a bad character trait, but I have really tired to follow my heart and give the people who attend equal opportuntity to speak and equal importance to the guest speaker. I brought the T-shirts (wore one last time) and mentioned the cookbooks at the beginning of the meetings and we have done no fund raising projects. I just ask their help with stamps and envelops and I get it. I'm planning on wearing my T-shirt and visor and bring some cook books to the Oct. 21st meeting, but my goal is to educate (doctors, patients, and families/friends) and support one another. I tell the docs "No slide presentations allowed". I've told Allergan rep who offered food, "no thanks". He can buy stamps and envelops, come to any or all the meetings and be a guest speaker, but I have too many in the group who have Meige so bad they can't eat in public and I don't want the time taken up eating....we have too much we want to talk about and share. I think food keeps people from opening up sometimes too. I am amazed how many people who have this disorder (some for 10-20-30 years, don't have brochures and basic information and have sat home for years with their eyes closed because Botox didn't help the time or times they tried it years ago and they just stop going to the doctor and stay put and suffer. I carry tons of information, some from BB, anything I can get free from the BEBRF(which is tons of stuff) and they grab it up like candy. I mention the BB as one of my most profound means of emotional support for info and laughter. I encourage them to log on, add it to their desktop screen and join us. I have several who try to come every time they can, but I also have people for the first time at every meeting. I had a family who brought their Mom from Knoxville twice. Kelley's parents from Franklin came once. A daughter who has a Mom with BEB out of state came to the last meeting. It keeps me humble and thankful I started the group and I feel that it has helped give this crazy disorder some meaning and purpose and a reason to keep getting up everyday. I get calls from all over and it is a joy to be there for them. I remember oh so well the first call I made to Linda Webb and how she helped me believe I could survive and still have a life. I got her phone # from the BEBRF brochure. I want every doctor to have stacks of those brochures to give to patients. My new neuro has just gotten on the BEBRF mailing list at my request and I took her samples of brocures and the little business cards and pleaded with her to stock her office with them. She said she had always just done her own education..........I told her that is good she takes the time to do that, but her patients still need those brochures in their hands to take home. Maybe that's why I change doctors so much...I've had every doctor who I've seen get on the BEBRF mailing list. When I send in donations I ask that packets on Social Security be sent to the doctor I'm seeing. Oh me I'm on my ...this a calling for all of us soap box.....better get off. I hope no one ever comes to our support group and leaves feeling they didn't belong or it was about fund raising. Some body please tell me if that ever happens is my prayer.
--modified by Delaine Inman at Tue, Oct 09, 2001, 20:07:33 --modified by Delaine Inman at Tue, Oct 09, 2001, 20:11:36
Re: Support Group.
Delaine, all I can say is that I would like to come to your support group meetings. They sound wonderful and the way that they should be done. Why don't you write an article for the Newsletter and tell them what you do and don't do as "something that works" for your group? You might help out some others with ideas that they hadn't thought of.
You do good, my friend.Shirley in AR. who loves it when Delaine gets on her soapbox.
Re: Support Group.
That is a good idea. I'll do it, but it may take awhile cause I'm into fall dirt digging and landscaping and keeping my granddaughter often. Thanks for the feedback.
Re: Support ...
wow, delaine. this is pretty passionate writing. good for you!
Re: Support ...
I agree with the purpose of the bb as previously stated - information, support, encouragement. The beb support group in the Dallas area is pretty much nonexistent so I went to the dystonia support group meeting. I was 1 of 3 with beb. Most had sd. We did divide up and I was asked to lead the beb discussion and did help answer some questions about doctors and treatments but overall I came away without any new info. We did discuss fundraising. While we all converse there are certainly bonds that form between members for whatever reason. Mindy has been a blessing to me and I thank God for her presence in my life. If you are reading, thank you Mindy. Kelly in Dallas
Re: Support ...
Hello, Dee,>... older people, no one from the BB, and I must say for as long as some of those folks have had BEB, they were not very saavy or informed.< You have hit the nail on the head. People who are not on the E-net simply cannot comprehend what they're missing. It's like a '48 Sedan trying to compete at the Indy 500. You may be skilled at what you're doing, but BB participation keeps you supercharged and miles ahead in understanding. Although I am not personally concerned about HFS, for example, still I have learned more here in the last few weeks off a few URL's about MVD than anyone is ever likely to get even from one's own physician. Nowadays, ANY support group on any topic has to have at least a few people who can find stuff on the internet in order to be worthwhile. All the same, you also need people with emotional intelligence and people skills, to convey the best responses to coping issues. --- Lynn
Re: Support ...
The bb is my security blanket.When i feel down i know that i
have a greatgroup of friends that i can talk to.It is good to have some one who understands.
Ann i am sorry that you are having problems.
My son turned 50 & has been in the hospital for depression.He is home now but still not able to work.With him being sick & everything else going on my eyes are not very good
If i can help in any way e mail me.
Colleen in IL
Re: Support .../lynn
emotional intelligence. now there's a really important concept!! it's closely related to empathy. and you're right that quite a few people do not possess this skill or don't want to.
Re: Support ...
answers on any questions we might have, help from experience in dealing with the problems we have in coping with this disorder from those who might know a better way of handling it. intellectual stimulation, laughter , and sometimes mundane chitchat: everything that it already does provide. Also and importantly, any new develpments in treatment of this thing, so we can share this info with our doctors and improve what is already being done.
Re: Support ...
First and foremost for me was finally getting diagnosed and having all
the love and support to accept and deal with this disorder. Good information regarding all the "symptoms" we have and how to deal with
them has helped me keep my "sanity". I've gotten more information from the bb than the medical community. And we all know how stress affects
us in such a negative manner and support is about helping, caring and reaching out to each other. When my best friend, Beaumont, (my 11 year old golden retriever) died, I turned here for comfort and I got it.
Not only did I get that, but several reached out in other ways that I
am so grateful for. I don't want to diminish the importance of fundraising--especially our very own Nilda who works very hard and puts
her all into it and what would we do without her--but I don't think that should be the primary objective of the bb or support groups. However, it can be a useful vehicle in a secondary way when those who are ready, willing and able come forth and help to support in a financial manner with whatever means is necessary. Joanne M. San Diego, CA
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