Posted by: June in Toronto ®
09/11/2003, 16:22:26
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The botox will eventually lessen and the right side of your face should improve if the problem is just too much botox. I've never experienced any trouble swallowing after the injections but others, who have a more severe Meige than I do (and have trouble swallowing or perhaps breathing in general with the Meige), might experience this if they have injections around the mouth/jaw area. I would call your doctor though and let him know what is happening to you.I hear your frustration with all this - its not much fun, for sure. But we all need patience to deal with it and our other medical problems. Hang in there I'm sure there are better days ahead. June in Toronto
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Posted by: Junebug ®
09/11/2003, 17:01:28
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Thank you June. I needed that encouragement. Just been a bad day. I am just so very tired. My Lupus makes me so tired and in so much pain and this new problem has just added insult to injury. Thanks for being here and letting me vent. Hugs from OK.
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Posted by: Ann Doyle ®
09/12/2003, 18:53:37
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I have BEB?Meige. I have trouble swallowing. Sometimes if it is food, it will come out my nose but that has only happenend a few times. Sometimes a piece of food cannot be swallowed and I can't spit it out. I go to the bathroom and cough till it comes up. That has only happened a few times. The main thing is just swallowing saliva. It is just frustrating won't make a difference. I used to be scared that I wouldn't be able to breath but my doctor told me that won't happen so I don't worry anymore it is just frustrating . It wakes me up at night. If I sit up , it is easier. It only takes a couple of minutes but for the third time, it is just irritating and frustratin. It doesn[t hurt. Ann Doyle
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Posted by: Delaine Inman in TN ®
09/11/2003, 18:05:04
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We have all been there asking those questions....it is just part of being human and normal. I know it is hard to believe but you will actually get answers. Sometimes you need a hug((((((((())))))))))))) and a pity party. So in your honor we shall have one.....everybody come on over to Junebug's and we'll throw her a big one. In the mean time go soak in the bath.....your favorite kind. I like Epsom salts because when you do cry it mixes well with salty tears and when you have soaked as long as you want, you let your worries and your pity go down the drain. We'll bring a soft robe and fuzzy slippers in your favorite colors. I'm a massage therapist as well as a nurse, so I'll come out of retirement and massage your feet.....heck I'll give you a full body massage.....let's go all out here. Somebody bring chocolate and lots of it!!!!!! This is an emergency. What is your favorite music....someone will bring that. Your favorite aroma candles........someone will bring those. You'll get a manicure, a pedicure and a cure for what ails you. Someone will brush your hair and rub your face softly and tell you how wonderful and beautiful you are inside and out. Leave the porch light on and the door unlocked and we'll just make ourselves at home. Ya'll come ya hear?
You do need to let the doctor know what is going on with the right side of your face and especially the swallowing.
I have 2 unknown cause and unknown cure.....but I'm still standing and so will you with a little help from your friends.
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Posted by: Junebug ®
09/11/2003, 19:20:04
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Thank you. Thank you. I needed that. I am smiling (on one side anyway). I wish you could all be here. I love a good massage and topped off with chocolate. wow. Thank you. I will talk to the dr. tomorrow a.m. Hugs. Rest well.
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Posted by: Delaine Inman in TN ®
09/11/2003, 22:09:43
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So what is your favorite color, aroma therapy candle and music? People need to know what to bring to get this party going girl friend. Chocolate is taken care of.....massage on the way. I think it was Mother Teresa who said, "God doesn't give us more than we can bear......I just wish He didn't trust me so much!"Kind of know the what she meant, don't we? We are strong, we can handle it, we are more than survivors.........Let's dance like nobody is watching and sing like nobody cares.....let's party and tomorrow is another day. Love, peace and comfort to you. one more profound quote: Thank you, for loving me, for being my eyes when I couldn't see, for parting my lips when I couldn't breathe, thank you for loving me......Jon Bon Jovi That's what friends are for.......to make you know you are not alone.
Modified by Delaine Inman in TN at Thu, Sep 11, 2003, 22:16:00
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Posted by: Mary, upstateNY ®
09/11/2003, 21:03:40
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Delaine -- You're so right! It's been a long time since we had a good,old fashioned "cyber pity party" !! Let's all just zoom over to Junebug's house and give her the works! Your massage sure sounds great. I'd love to bring the chocolate. (My brother makes it, remember) Let's get going,folks.......she needs us! Mary
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Posted by: Rita Molnar ®
09/12/2003, 23:57:40
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Party???? Did someone say Party?????Move over...I am on my way, Junebug....with a big bottle of BUBBLY....with a monster-size box of Godiva chocolates--enough for everybody!...and I'm going to bake a "smiley cake" just or you (if you can't smile, the cake will do it for you.) I'll be there in my little RED Ford Focus....I love red, too!), and I'm bringing along some music--We can start with Classical...then graduate to Blues...then we'll chase the blues away with a little "Rock"...ARE YOU READY TO ROCK, JUNEBUG ???? I know what "discouraged" means...what a lousy place to be! You have more than enough reason to feel "down"...you've been given a lot to handle. But you'll do ok, and you WILL have better days!! Hang in there, for when the rest of us will be needing you...and, please know that prayers accompany this note.... Hugs...Rita in New Jersey
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Posted by: Delaine Inman in TN ®
09/13/2003, 07:18:40
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You sure know how to do the party thing.......especially the music and the chocolate.........yummy. Went to the state fair last night with sister and our spouses just to go to the concert of the Coasters, the Drifters and the Platers!!!!!! Wow......talk about fun and wonderful!Wish you all could have been there. Now that was some music. A natural HIGH and very ROMANTIC......ooh la la!
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Posted by: denise mckew ®
09/11/2003, 20:40:22
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June,I am so sorry that you are struggling with the injections, side effects and your Lupus all at once. Delanie is right, take some time and be good to yourself. And don't get down on yourself for having "rare disorders". As hard as it is, try and believe that your only given what you can carry. And you must be an incredible person to have such a load. You take care of yourself. Denise
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Posted by: denise mckew ®
09/11/2003, 20:46:34
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I had another thought, you have had so many shots recently, that I wonder about where and how much Botox you are recieving. Does your doctor map out for you the placement and amounts? I think everyone here knows the importance of the injection sites. I may well be that with time and tracking, you'll be able to minimize the number and frequency of the shots. A good injectionist makes a world of difference. Take care
Denise
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Posted by: Kathy in Atlanta ®
09/12/2003, 08:48:24
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Junebug,
i have had throat spasms before after my injections and this can be a tempory side effect especialy after the amount of botox you describe. Maybe some cool liquids to soothe your throat or some type of hard candy you like as also they can have drying effect.
I certainy would not mind having a pity party such as the one described by delaine!!
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Posted by: Junebug ®
09/12/2003, 09:36:03
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Vanilla/Lavendar fragrance puts me right out. I love good classical music played softly and if you would believe it with all the calm things, my favorite color is RED. :o)I am so thankful for you and for your encouragement. I have been smiling (half smiling) ever since I started reading. I just have to keep on Frogging! FROG Fully Relying on God!
I know he doesn't give me more than I can handle but I think he has me mixed up with someone else! I left the light on all night! I guess I will try again tonight. It will give you more time to get things together and get here. :o) Hugs and Blessings.
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Posted by: Delaine Inman in TN ®
09/12/2003, 09:58:53
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Oh but we were there......it was just so magical you don't remember! Hope you are feeling better today. When my Botox helps my eyes, my nose and face spasm. When I first told this to my neuro/ophth years ago she said it was a coincidence and I was getting meige....I didn't buy that, because it would stop when the Botox wore off and then happen again after the next Botox. That mystery creature that causes our nerve cells to fire like fireworks finds a way around the paralyzed muscles to those that are not. Determined sneaky creature!!! My BEB has not progressed to Meige. When the Botox starts working until it peaks, if I get really tired, stressed and in a vehicle too long, I've had my face feel like something is crawling under my skin or twitching and my lips purse, but when the Botox starts to decline all the symptoms go back to my eyes. That is the way it has been since my first Botox in June 1999. Lots of rest and TLC to you today.
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Posted by: Junebug ®
09/12/2003, 17:09:34
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I wondered why I was having such a good day today and why there were chocolate wrappers all over the house and the bathroom smells of vanilla/lavendar bubbles and thanks for the cleaning and the cut flowers on the table.I love the BBF fairies! You are explaining a lot of what I feel. I sometimes wonder if I look as weird as I feel now. Of course, my kids would say, "Well, no different than usual!" They are great at helping me keep things in perspective and support me and I have a truly wonderful hubby who gives me the massages when you can't be here. Have a wonderful weekend.
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Posted by: Junebug ®
09/12/2003, 09:36:20
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Vanilla/Lavendar fragrance puts me right out. I love good classical music played softly and if you would believe it with all the calm things, my favorite color is RED. :o)I am so thankful for you and for your encouragement. I have been smiling (half smiling) ever since I started reading. I just have to keep on Frogging! FROG Fully Relying on God!
I know he doesn't give me more than I can handle but I think he has me mixed up with someone else! I left the light on all night! I guess I will try again tonight. It will give you more time to get things together and get here. :o) Hugs and Blessings.
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Posted by: OFudge ®
09/12/2003, 16:28:10
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My BEB is getting worse, Meige has kicked in, and the spasms in my neck are almost more than I can bear at times. My oldest daughter, aged 25, has lupus, only the doctors do not want to call it that, they call it lupus like syndrome, because she is "to young to have lupus". My son, aged 23 has asthma extremely bad. My youngest daughter has no colon or large intestine and possibly lupus. my wife has bone spurs in her spine and and a herniated disc.i understand discouragement. trying to put on a pleasant face and encouraging others when i am walking "blind" down the hall is trying at tmes. "Junebug" all we can do is "keep the faith" and push on.
Raymond Fudge in Alabama. Hope you can make next years conference here in Birmingham. We can lean on each other a while for support. I go to see Dr. Patrinely next Friday for a follow up on my limited myectomy i had in Feburary. We'll see what he has to say.
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Posted by: Junebug ®
09/12/2003, 17:04:57
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Sounds like your daughter needs a new rheumey. She is not "too young" to have Lupus. My daughter has Lupus and they think I have had it since I was a child and was originally diagnosed with JRA.Sounds like you have your hands full. I am sorry for all that your family is going through. I am so glad I found this site. No one that I know in our little town has a clue about what is going on with me. I sure have a lop-sided smile today. :o) I can't even make a sign to describe it. I know it will get better as the Botox wears off I don't think I will let him give me so much in such a short time again. 34 injections in a little over a month seems like a lot but I am having so much trouble opening my peepers. My whole face is hurting by evening from the spasms. I guess the blessing is the new stuff is taking my mind off the old stuff. lol (Lupus, etc.) I feel for your wife. I get steroid epidurals in my spine that help for a while. Does she get them. I would love to go to the conference. It is a ways from Oklahoma but maybe I could add it in to a trip to FL to visit "grands". :o) Hope your family has a blessed weekend with less pain and lots of sunshine in your hearts. Joyce
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Posted by: Delaine Inman in TN ®
09/13/2003, 07:23:55
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You do have a lot going on in your life and I know it must be very hard at times. Men are welcome at our parties anytime too. I will meet you next year. I've promised Linda Webb I would help with registration! Love, Peace and Comfort to you and I hope you soon will "see" better days.
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Posted by: Anamarie ®
10/15/2003, 19:58:13
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Raymond,So sorry to hear that you are having so much trouble. What did Dr. Patrinely say when you saw him? Sherrie Fultz, who goes to the same neuro-ophthalmologist that I go to here in Winter Haven is also having quite a few problems. I took her out to lunch a couple of weeks ago and the longer we talked the better she seemed to be doing. She sends a video to Dr. Patrinely every so often. Dr. Patrinely reviews the video then recommends to Dr. Susac where to put the injections. She also has Meige's Syndrome. I am sure that Dr. Susac uses Dr. Patrinely's suggestions but makes some decisions based upon his own observations. You are in a terrible situation. Everyone in your family has major problems. How unfortunate! Tom and I will be sure to include you and your family in our prayers. Our first support group meeting for the Tampa/Orlando area is a week from this coming Sunday. So far we have 36 people who have said that they will be coming. When I sent out the invitations I asked that they respond. I imagine that we will have more from other Florida areas who read about the meeting in the BEBRF Newsletter. By the way, in the September/October Newsletter on page 6 I am in the lower left corner facing the camera (the blond) talking to Dr. Patrinely. You saw me for just a few seconds at Sacred Heart on the day that you had your pre-surgical testing. I vaguely remember you and your wife. She asked if I had blepharospasm and gave Tom your buisness card. By the way, I finally figured out how to reply on the BB. Now I won't have to send email. Keep your chin up. It has to get better. Anamarie Coffman
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Posted by: Barbara ®
09/13/2003, 10:24:23
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Yes I have have experienced difficuly with swallowing after my last injections. It was the first time in eight years that that has happened to me. I felt like the spasms had spread to my larnyx. I freaked and called my doctor. The symptoms wore off after a few days but what a scary feeling. Hang in there. I"ve been there.
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