Re: Amazing Grace! Lurker
Howdy, Lile, how y'all doin'? I was born in Fort Worth and went to school in Wichita Falls and Houston. What part of TX do you come from?I'm glad you decided to join in the general gabfest here. If you need information, ASK. If you need to just have fun for awhile, DO IT. If you feel full of frustration and anger, LET IT OUT. We've heard most of it before --- but not from you. This may be important: the National BEBRF convention next year will be in Houston in late August. You should plan on taking part. Find someone to take you by the hand and come stumble around with the rest of us. But put it on your calendar and stick to it. --- Lynn
Re: Amazing Grace! Lurker
Hi Lile, welcome to the BB, which apparently you are already quite familiar with, you lurker you! Isn't it kind of sad to be glad to be told you have an incurable neurological discorder, after having one wrong diagnosis after another. I too ended up at a shrink, who ordered me to open my eyes, I could have slugged her.
Anyway, this is the place to let it all hang out. You can bitch, moan, complain, cry, whatever, and also share your happy moments.
Today we are having a party for Joyce, I don't have to tell you who she is, since you've lurked long enough, so join in and let's be happy today.Christel in Ca. who was not born in Tx, but in Germany, which is not nearly as big.
Re: Amazing Grace! Lurker
Lile,Welcome to our family! I am soooo glad you decided to post instead of lurk! And your story is so much like the rest of ours. So, Lile in Texas, lurk no more and welcome again to the land of the posters!! What part of Texas are you from? And we'd love to hear more about you. You know how it works. Dee in OR
Re: Amazing Grace! Lurker
Welcome, Lile, from a native Texan transplanted farther east. Glad you have been with us for the last few years. Now that you have posted, maybe we can get to know you as well as you seem to know us. And Lynn's right about the conference. It is a great opportunity to meet other Blephros and learn a lot about our disorder.
Virginia in AL
Re: Amazing Grace! Lurker
Glad you came out of the `woodwork' and decided to join us Lile - welcome. Good Bless You.June in Toronto
Re: Amazing Grace! Lurker
Glad you got a sign to post. We love having new people join us. Shirley may be doing laundry, but hopefully she'll show up for Joyce's party. My son lives in TX and I have a trip planned to go see him the first of Nov. He lives in Jefferson. So do tell us more.
Re: Amazing Grace! Lurker
Hi Lile ... Welcome to this zany site. Isn't it just like real life: throw a party and everyone comes out of the shadows!! That's great. Hope to hear more from and about you soon.Sally in North Idaho
Re: Amazing Grace! Lurker
I`m from a suburb of Fort Worth,but mainly go there for everthing accept Wal Mart.I saw several ophthalmologist ,they had no idea what was wrong. I was also having other symptoms.So was send to two urologist and rheumatologist.I had lab. and out patient tests done. Anyway it seemed like everyother week for a year it kept going .Even got send to a shrink (didn`t go).When I finally got send to this fourth ophthamologist I was happy he told me about Beb and gave me the foundation # and a pamplet.That is how I got here.Sounds great ,but when I asked about shots (location and dosage)the second time ,I got shots, he said I did it like the diagram I gave you the first time.Everyone I do gets the same amout and same locations.The foundation told me when I called to tell themabout what he said that he was one of the main names in Ft. Worth they had.
Sending the dogs on a mission ...
Lile:Your doctor's comment: "Everyone I do gets the same amount and same locations." is in a word, stupid." No two faces spasm in exactly the same places. As to sending my dogs after him - I have two Rottweilers and also rescue Rotts. They would not be amused :) Take care and welcome to the pickle barrel. Judy Blackman
blkmn36@earthlink.net
Moderator
--modified by Moderator-JB at Sun, Oct 21, 2001, 01:49:23
Re: Amazing Grace! Lurker
Lile,
Welcome to the bb as a poster. Happy to see that you have gotten past "Lurker Status".
Your doctor sounds like my first doctor that I fired. He also was recommended by the BEBRF. I am certainly not criticizing them in any way. For quite some time, he was the only doctor that I knew about that gave the botox for BEB. He also gave everyone the same amount and in the same locations. After all, he was the doctor and knew best as he had been doing it for a long time. I was the problem. Many of his patients really like him. I guess that they fit into his niche of people that he can help on his terms. I didn't fit into that mold. Sometimes you just have to find someone else. As Judy says and I agree totally, "same amount and same locations for everybody" is really, really STUPID.Shirley in AR who still cringes everytime she thinks of her first botox doctor.
Re: Amazing Grace! Lurker
Thanks again all you girls for being here for me.Sorry for having been hiding so long.Life just got so complicated.I knew about units and locations cause I read the Beb posts .I didn`t want to start with another Dr. since all the other ones I knew didn`t know what I had,including my primery care phy. I thought if I go try another he might say I didn`t need the shots. Of course the shots have not really worked good .The first two times sorta did.But since then not real good.I once asked him about medicine and he said ,he didn`t give any, that shots were the best way.Another time I asked about surgery and he said he didn`t think it was the thing to do,it didn`t work. He is a real well known plastic surgeon.But even in Beaumont they said he was one of the few on list.There are no movement disorder DRs. on list and no neuro.Ophth.If I hadn`t learned about Benadryl here ,I`d really would have gone insane.It really works great for me but I try to use it very little .I`m scared to be come immune to it.
Re Finding another doctor
The BEBRF is a wonderful place to get names of doctors, but there is no gaurantee they are the only doctors in the area or the best. As I mentioned before, I found 4 neurologists in Columbia,TN who were not on the list. I got 2 of them to get on the mailing list and am working on the other 2. Sometimes you just have to get on the phone and call all the neurologist in the phone book and ask questions. Also my best source was the Allergan Rep in this area.....he knows who buys a lot of Botox. My insurance paid 100% for the initial visit to check out both the neurologists I saw....they thought the docs were evaluating me but it is a two way street....you've got to find the right fit.
Re: Re Finding another doctor
Good rational thinking Delaine. Where did you get all the common sense? Certainly not in school. They do there best to dump it. Ann D.
PS For all you teachers out there of which I was one. It's the system that stinks. Now would you please write that in triplicate. Ann
common sense
51 years of experience, many bad choices, therapy, getting real and honest, assertiveness training and I've always had this "knowing" about many things that people often said was common sense. I loved every minute of school and didn't stop going until 1998. I finished my Master's degree one year before I got BEB.....maybe I shouldn't have stopped and the wiring wouldn't have gotten crossed. Or maybe my wiring got crossed because I had too much "schooling". I love to teach, that was my favorite part of nursing. If I had not been a nurse, I probably would have been a teacher. When I am up in front of any size of group teaching, it feels like Bliss. I did workshops for nurses and felt more real doing that than any other moments in my life because it came straight from my heart and no one fell asleep. I could feel the connection with each person no matter how big the audience. God I miss that feeling.
Re: common sense
I loved teaching too mostly math and grade school. I also loved going to school once I got out of high school. I was forever being sent into the hall for talking in school. I couldn't believe that I was being paid to TALK in school as a teacher. Ann Doyle
Re: Amazing Grace! Lurker
Thank you all for the warm welcome.Our youngest son had cancer 0ne week before Christmas 1995.He had surgery, radiation,and of course ,you know our kids are our life.He is now just fine.But when all that was going on my Dad and best friend also had cancer. They are all fine now.But around the time our son was having treatments there was another real personal thing (problem) happen in our lives. I now believe that it was depression and stress that really got me here, to my disorder.I sort of have stopped living the way I used to.Now the other problem is not importent. It`s still here,but I accept it .You can`t change what is.But I guess the Beb is here to stay( even if my other big problem has been accepted.Hope you understand without details.
Re: Amazing Grace! Lurker
Lile,We don't need details to understand. And you certainly have had your plate full so to speak. Hope life is kinder to you these days. Yes, stress can bring on the blephs as can anti -depressants and other medications. Glad you're here. Dee in OR
Re: Amazing Grace! Lurker
I know from experience that stress makes it worse but something strange happened that I don't understand and haven't written about before. When my grandson was murdered, it was one week before my shots and I was at my very worst. Yet the day of visitation and the next day of the burial, I was perfect. A miracle? Any other explanations? The next day I was back to bad, bad, bad until the day of Botox. Does anyone have any explanations? Ann D.
Re: Intermittant good days
Ann, I think that we all have good days and bad days. I, very rarely now, will have what I consider a really good day for whatever reason. Sometimes differences in activities that we are doing or are involved in sort of tricks are brain into thinking about something else and therefore may give us a bit of a respite from our symptoms. Just my opinion about what happened.Shirley in Arkansas
Re: Intermittant good days
I vaguely remember someone posting at one time (can't remember who or when) that she went through some crisis during which she had to perform all types of functions and her eyes remained normal during that time, until it was all over. Christel in Ca.
Re: Intermittant good days
calm in a crisis , fall apart afterwards. don't most women live like this?
Re: Amazing Grace! Lurker
Ann-I haven't had a bad experience like you had, but I have found that my eyes mysteriously seem to be open more in extreme cases, when I HAVE to keep my attention on similar things. It probably is a miracle, but I think it's called adrenaline. When we had to rush my father to the hospital, or things like that happen, I guess I'm concentrating so much on what HAS to be done, that it fools my brain into "normal". It doesn't happen much-rarely, in fact, but I think I know what you're talking about. And sometimes things like that make my eyes worse. Who knows??? Mary
Re: Amazing Grace! Lurker
As I had said Sept.,Oct.,and Nov.1999 I was completely functionally blind. In the middle of Oct. my husband said lets go to San Antonio for our anniversary. I didn`t want to cause I was blind.The moment we got to the lobby of the Hilton by the riverwalk, my eyes were perfect.We met another couple there.I shopped neat stores, read menues,went to the craft shops,took off sun glasses and thought a miracle.But when it was time to come home I couldn`t read numbers on the phone to check out.We stopped at a restaurant and I couldn`t read menu.I hadn`t been diagnosed yet,so I thought I was crazy.When we got home we figured maybe it was an allergy in our house. But then we knew I got bad again when I started to check out.So crazy was more like it .Was diagnosed Nov.22,1999. I didn`t dare tell the Dr. about my experience(I figured he would have send me to a shrink.
--modified by Lile at Mon, Oct 22, 2001, 01:27:43
Re: Amazing Grace! Lurker/Shrink
I think it would be interesting to find out how many people here have been sent to a "shrink", myself included. Mary
Re: Amazing Grace! Lurker/Shrink
Mary, perhaps we should take a poll.
I was sent to a shrink too.Christel in Ca. who has shrunk, but not by a shrink
Re: Amazing Grace! Lurker/Shrink
I AM a shrink! And I sent myself to a shrink and she said it was a "Conversion Disorder". I said NOT. So I sent myself to myself and have been talking to myself ever since! Dee in OR who has been shrunk so many times it ain't funny!
Re: Amazing Grace! Lurker/Shrink
Hi Dee,
Have you ever read "Blepharospasm and Related Disorders: A Historical Review of Etiology and Treatment" - in particular the 2 chapters on
psychology and psychiatry? There are about 40 chapters in this book disclaiming any psychogenic cause of blepharospasm, but these 2 chapters really spooked me. I was relieved at Dr.Jankovic's statement at this year's conference that "BEB is definitely NOT psychogenic, but still, I sometimes wonder - is there a whole other group of doctors out there who disagree? It's not that I want to be crazy, believe me. But hey, if they could cure me, who cares what they'd call me?
My emotional history (up til now) has been pretty standard I think.
A little PMS here and there, but always functioned well within a happy marriage with 4 great kids, and a successful family business. My husband and I are both Scorpios, and we've been accused of being pretty intense, with just cause I think. In Nov of last year my husband (age 59)had an emergency heart valve replacement and bypass. Three weeks later I (age 57) had angioplasty and stents. I was back at work in a few days, very grateful, thinking I had been given an E-Z Pass. We did start succession and estate planning at this time (we figured we'd had a wake up call) and these are pretty stressful issues. Did all this cause the BEB symptoms which started in Jan? Couldn't keep my eyes open while working on computer. At first I thought it was a bad reaction to medication. I even went to a famous cardiologist (wrote a book on NY Times Best Seller List) who believes in a more natural approach to treating heart disease. I brought along BEBRF information. He gave me a bunch of supplements and told me "never to read that stuff(BEB info)
again" Asked what it was I didn't want to see? Said I should do meditation and "close my eyes whenever I wanted to". In fairness to him, this was out of his field, and my eyes hardly blinked when I was in his office.
I've learned a lot since then - much from this BB!
Good grief, I've written a book. You better send me a bill.
Thank you so much for listeningto my worries.
Barb in NY
Re: Amazing Grace! Lurker/Shrink
Wouldn't it be wonderful if we could be "shrunk" out of this disease/ disorder/condition/whatever?? They could label me looney or anything else if I could be cured!Sally in North Idaho
Re: Amazing Grace! Lurker/Shrink/barbara
barbara, why on earth do suppose this doctor told you never to read that stuff on BEB???? was he afraid that you might find out what was really wrong with your eyes or what. can you speculate on his reasons at all? i am really curious about this one.
Re: Amazing Grace! Lurker/Shrink/barbara
Kathy, He told me he thought my problem resulted from sensitivity to medicine in general, a history of lazy eye as a child, and severe stress when my husband was sick, especially my inability to cry at that time. He said this was repressed fear, and that I should try to cry every day! I think he truly believed that this was an emotional problem and not neurological. He thought the BEBRF info was aggravating my symptoms. I did leave his office with a lot of hope, which soon faded as symptoms progressed. Actually, his causes might be correct, but I now believe the resulting disorder is neurological. (I think!)
Barbara in NY, who is playing hookey today
Re: Amazing Grace! Lurker/Shrink/barbara
Hi Barbara,
I always called "playing hookey" Mental Health Days. These are a must in some professions-maybe all.Shirley in Arkansas
Re: Mental Health Days
Hey Shirley,
When one of my sons was in high school we let him take the day off for a World Series game. All would have been OK if only the darn kid hadn't bragged about the game to his friends. Guess who got called in to the dean's office? Me! After listening to a big lecture which I guess I deserved, I was asked how I could justify my action. (This was a pretty strict parochial school) I defiantly replied: "he needed a mental health day". Boy, if looks could kill, I'd be dead. At least the kid got off the hook. Everyone needs mental health days once in a while
Thanks for reminding me of this today I was feeling a little guilty.Hope YOU'RE feeling OK. I know you've been having a bad time lately.
Wish I could say or do something to help you, who help so many others! Barbara in NY
Re: Mental Health Days
A man I used to work with would call in every once in a while and say he had eye trouble and wouldn't be in to work. He explained to me that "he just couldn't 'see' himself coming in to work that day." I guess we all had our ways of taking off days when we needed to. I found that if I didn't every once in a while I would get physically ill. I decided that it was easier to take off one day to de-stress than to wait til I was really sick and have to be out more.Virginia in AL
Re: Mental Health Days
Thanks Barbara and I hope that you are no longer feeling guilty at all.
I'm doing ok. Not great but I'm managing. I get my botox on Monday so that will probably help things a bit.
Just think. You folks are getting a reprieve from all my long-winded posts. I'm sure that some are breathing a sigh of relief. :-)Shirley in Arkansas with BEB, Apraxia and 12 weeks post botox and 6 months post upper limited myectomy...........
--modified by Shirley-Arkansas-USA at Wed, Oct 24, 2001, 21:04:54
Re: Mental Health Days/shirley and barbara
SURELY is actually a very good writer and probably explains things more completely in what she refers to as longwinded.
Re: Amazing Grace! Lurker/Shrink/barbara
actually, his thought process on this was pretty complex, but now you know what you do have, you hope! didn't they mention something like this as a possible in the most recent newsletter? psychogenic?
Re: Amazing Grace! Lurker/Shrink
I can imagine either Dr. Ornish or Dr. OZ who are both cardiologist who I am familar with and who have both been on the best seller list saying that to you. I have a great deal of respect and agree with many of their concepts, however I know there are things about dis-ease they don't understand completely. In the beginning because of my Holistic/Mind/Body back ground,I felt there was something emotional that might be "causing or keeping me from being healed". Much the same way a person who believes God will heal them and then feels guilty when it doesn't happened, I struggled and have to admit still do at times, about the emotional barriers that may be are holding me back. One thing I "know" for sure is that dis-ease and healing are very complicated no matter what the cause; feeling guilty for having this is not helpful. Stress exacerbates any disease and can be the trigger to something we are already predisposed to get because it is in our genetics. Chronic stress causes toxins that weaken our natural defenses and immune system. I've done a great deal of studying of great healers, both religious and metaphysical and it serves no purpose to add further torment asking "what have I done wrong or what am I not doing right". We just may be the carnaries of the universe....we may be more sensitive to the toxins in the environment, the toxins we take into our bodies and the toxins of chronic stress and fear(not only ours but from others) that cause something to go wrong in our brains and manifest as BEB/Meige/and other dystonias. That goes for MS, ALS, Parkinson, Alzhiemers, and many other neurological disorders and perhaps many other diseases. I do think it is important that we keep our minds positive, our hopes high, focus on what we can do and focus on just trying to be as healthy as possible and stay in the moment as much as possible instead of living in fear of what tomorrow might bring. We have to keep turning over the rocks, looking for a cure or relief of symptoms in what ever way we can and do what ever works for us. I still do a lot of emotional work and stress mangament because I think it is relevant for me. I journal, write poetry, explore my past to see how it could be effecting me now, pay attention to my dreams, and have a group of people I can be totally honest with about some of the conflicts I was experiencing prior to getting BEB and since I've had it. The massage therapist I work with now is helping me explore some things. The point is, we can not give up! I don't want to be a victim or feel less than worthy or normal. We can not allow ourselves to be shamed for having this disease and we need to continue to share our stories because that is healing. I think we have a good balance here of information, support, and fun that makes it easier to cope and to continue to help new people who come here searching for answers. We don't have the answer as far as a cure, but we provide a valuable service and friendship that is very meaningful to those in need. That is a sacred calling in itself that many who think they know "everything" about the Mind/Body connection to health don't quite "get". No one understands healing completely, we just know the tip of the iceburg and have much more to learn. Just my opinion and another novel and soapbox ....BB Jail here I come!
Re: Shrinks & Question for Delaine
My doctor recommended I go to a shrink, and I'm sorry
I didn't go sooner.
I didn't have the BB, and I became extremely depressed.
I thought as others mentioned, if this was in my head, I didn't care,
I just wanted it Gone.
My shrink and MDS conferred with each other regarding
which meds. I could try. Many doctors give these same meds.
to BEB patients anyway.
So, I have a shrink that understands chronic dis-eases and he helped
me understand that this is not psychological, but the same brain
chemicals that involve muscle movements, like dopamine, are
the same brain chemicals that are involved with emotions.Delaine, you mentioned a lot of stress management tools you
use. I was wondering if you do meditation, visualization, or
deep breathing?
It has helped me so much, and I really would like to know
if anyone else is being helped by it. Mindy in NY
Re: Shrinks & Question for Delaine
The answer to your questions: yes, yes, yes and it is helpful.
Re: Shrinks & Question for Delaine/mindy
yes i find myself deep breathing at it does help. i sometimes have to meditate to get the "bad visuals" out of my mind.
Re: Shrinks & Question for Delaine
The problem is I CAN'T deep breath because all my muscles around my diaphragm are so tight all the time. I feel like iam being squeezed in a vice. But I do the best I can and I also use self-hypnosis which is a fancy term for meditation, visualization and deep breathing!Dee in OR
Just breathe
What ever works for you sweetie is the right thing to do. Meditation can be prayer(just taking your turn and listening for the still small voice of Spirit). Listening to soft music, mindful walking, digging in the dirt, dancing, tai chi, or anything that quietens the mind and keeps you in the present moment. Some people can't sit in lotus position and it isn't necessary to do it any certain way.
Re: Just breathe
Thanks Delaine,
You explain it so well.
I'm glad to hear it's helping Kathy and Dee, also.
Mindy in NY
Re: Amazing Grace! Lurker
Things like that happen to a lot of us and it does make you question reality or get your hopes up that the disease has gone away. It is really disappointing for the good days to end. The symptoms wax and wan, sometimes for unknown reasons. We rise to the occasion because of hormones and chemistry from being happy, less stressed, more needed, more excited, weather changes, attitude and who knows what. I've just learned the good days come sometimes and the very bad days come sometimes and try to take it as it comes. Stress and fatigue really effect this disease as well as most every thing else that goes wrong in our bodies. Hang in there and post often.
Re: Amazing Grace! Lurker
Thanks for all the explanations. I don't care if it was a good day, brain trick or adrenaline. I thank God for the break . Ann Doyle
Re: Amazing Grace! Lurker/mary
mary, you may be right about this, the adrenaline. but that type of extreme stress is really hard on one's system.
--modified by kathy at Wed, Oct 24, 2001, 02:54:58
Re: Amazing Grace! Lurker
Shock and adrenalin?Sally
Re: Amazing Grace! Lurker
Enough said, Lile. At this site, you say/tell as much or as little as you want. Everyone is accepted as is ... someone just declared that we are all thin and beautiful/handsome, and that's the way that it is!I'm pleased for you that your family members are recovering from cancer. You've had much stress to deal with and that certainly aggravates BEB. Hoping you are on the road to a happier existence now and will enjoy being here. Sally in North Idaho
Re: Amazing Grace! Lurker Ft. Worth
I know there is nobody posting from Ft. Worth area.But if there is someone lurking around and you have a great Dr. please let me know who he is. Thanks,Lile Tx.
Re: Amazing Grace! Lurker Ft. Worth
Have you contacted the BEBRF area rep for Texas? She might be able to put you in touch with others in Fort Worth. See the link below to get her contact info (including email address). Virginia in AL, who moved here from Ft. Worth a long time ago and attended TCU there. Still go back to visit some.
Related link: http://www.blepharospasm.org/blefcon.html
Re: Amazing Grace! Lurker Ft. Worth
Virginia,when I first got a diagnosis I talked to the FT.Worth local support group Coordinator.She said hardly anybody went ,so she had stopped having meetings long time ago.( that was the person`s name I got from the foundation)I was at my lowest and I gave up.Then Nancy Townsend send me a card about a Dallas meeting and I didn`t go.It was too far and maybe nobody would go either.IT was 11-18-2000,I still had the card in my file( from your link I see she is State Coordinator).Maybe I`ll give her a call.I remember Priscilla going to some meeting and saying something negative about it(I could be wrong).I`ll probably call Nancy Townsend(thanks for reminding me of her)Faith and Strength,Lile-Tx.
Re: Amazing Grace! Lurker Ft. Worth
I think Kelly has been to Dallas support group meetings and was disappointed. I just thought Nancy might be able to put you in touch with individuals in Fort Worth that you could compare notes with.
Re: Amazing Grace! Lurker Ft. Worth
I have with about four different persons in my area, the Bebrf.told me about.Usually people that had gotten used(many years) with their condition and didn`t have much help for me.None ever had tried to even go in the Web Site (not even to Lurk, LOL)But I`ll give Nancy a call ,she might know of a good Dr. Thanks,Lile-Tx.
Re: Amazing Grace! Lurker/lile
welcome lile. it's nice to see another guy on this bulletin board. we need your input on some of the problems we have!
Re: Amazing Grace! Lurker/lile/article
On 7-6-2001 I saw an article in the paper(Ft.Worth Star Telegram) that upset me.Hannelore Kohl 68 ,wife of former German Chancellor Hemut Kohl, had killed herself on 7-5-01.She had struggled with a debilitating sunlite allergy that forced her to remain indoors.The illness began 7 years ago after she suffered a severe penicillin reaction.For the past15 months she had become a virtual prisoner in the family bungalow.All treatments had failed.Due to the hopelessness of her health situation she decided to end her life of her own free will. In a statement from Kohl`s Berlin office it said she left letters of farewell to her husband and sons,and friends.Officials would not say how she killed herself.The article goes on and on about politics even Berlin Wall things . They are wealthy imortant political people.I tried to get info. at the time about her on the internet but could find nothing different. Wonder (COULD SHE HAVE BEEN ONE OF US?)and have our BEB,disorder(curse).I never saw anybody post about it.Of course I was a lurker then.I saved the article. Faith and strength, Lile,Tx.
Re: Amazing Grace! Lurker/lile/article
Very interesting and thought-provoking, Lile. I also had a penicillin reaction when I was in my 20s and sunlight distress was my first BEB symptom. Probably no connection.Sally in North Idaho
Re: Penicillin Reaction
I, too, Sally had a reaction to penicillin in my 20's. I was tested for allergies to penicillin just a couple of years ago and was told "I am no longer allergic to it". I was given penicillin last year and lo and behold I was covered in spots from head to toe as a result. So I still consider myself allergic to penicillin.Hope you are feeling better. June in Toronto (beb/meige)
Re: Penicillin Reaction
When I was 19 I was broke out with hives all over,from penicillin. I had taken so much over the years for tonsillitis.Have never taken it again.Lile tx.
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