Re: Another MIA report
Hello Delaine, it sure seems like you have your share of troubles right now. My prayers are with you and your family during this difficult time - glad to hear you are working with holistic doctors to help you - you will need as much strength as you can muster to deal with everything. God Bless - and look forward to hearing what new approches you have tried and how they have helped.June in Toronto
Re: Another MIA report
You and your mother have been added to my prayer list ... near the TOP. I went through the diagnosis, hospitalization and ultimate passing away of my mother last summer so I know that it is not easy. The doctor offered so much hope that she would live a few more months that we did not properly say good-bye even though I was with her many hours during her 40-plus day hospitalization. By the time I knew that I needed to "talk" to her and not talk around the whole issue, she seemed to want to sleep all the time and would/could not talk at length. I regret that very much. I hope you and your mother have many opportunities to talk and bond again as mother and daughter during this very difficult and stressful time and also that the new things you are trying are successful.
Prayers,
Cynthia in IL
Re: Another MIA report
Delaine, My prayers are with you and your mother.
I took care of my mother when she had cancer.Iloved her very much & did every thing i could.
God Bless you & your family
Colleen in IL
Re: Another MIA report
Delaine, thanks for sharing what is happening in your life. I am sorry
to hear about your Mom--72 is still young today. I will keep all of
you in my prayers. Keep us posted regarding the alternative approaches
that you try. Take care and God Bless. Joanne M. San Diego, CA
Re: Another MIA report
Delaine, I am so sorry to hear about your mother. I will make sure that I keep her in my prayers. It is things like her situation that makes us tend to forget about our own problems and put htem in perspective when we do get a little down.Today, I lost my Godfather to cancer. I think that I posted a little over a week ago that they had given him twelve days to live and how unfair he thought that was that he had to put everything in order in such a short time. Well, he lasted eleven days. I don't know how they can tell. He was a multi millionaire who worked right up until those eleven days ago. By the way, he was 73 and was in the process of buying a new furniture store and had just sold the television station he was a partner in. Can you imagine. Here I am at 56 and can't work but I certainly would trade my situation. My sisters best friends daughter just was killed in a car crash this morning so it has not been a good day. She was only 18. Again, it is these things that make me feel blessed that I am not worse off and I always think and pray about the poor people such as your mother who are going through so much. Again, she will be on my prayer list and I hope that this time, the doctors are wrong and she will improve in health. Please keep us posted. God Bless...Alan
--modified by Alan Phair at Mon, Jul 02, 2001, 20:26:34
Re: Another MIA report
Please keep my school district and all its employees in your prayers, too. I have been hesitant to write this because it is so sad and depressing, but last week, wonderful friend and teacher at our school was murdered by her own 15 year old son. Apparently he was on steroids and went into a rage. We are all in shock. The funeral was yesterday.
Shelley/CA
Re: So many sad things happening
Dear Shelley,
How terribly sad and impossible to understand. My prayers go with them all. I got up this morning to the TV news reporting that four fire fighters had been trapped and killed fighting a fire in north central Washington, not a great distance from here. Fire danger is about as high as it can get this year, so everyone is on pins and needles.Sally in North Idaho who sat with crossed fingers when fireworks were being shot off on the mountain behind town. Seemped pretty risky to me.
Re: So many sad things happening
My heart goes out to the friends and family of the woman. How tragic. I hadn't heard about the firefighters yet. My husband has been a firefighter for 14 years so I always feel a little sick when I hear about those who die in the line of duty. May God be with all of the families who are suffering.Kelly in Dallas
Re: Another MIA report
How very sad. I for one, will be glad when there is no more sadness or suffering, as the Bible says.
Evelyn
Re: Another MIA report
I am so sorry about your mother. You and your family will be in my prayers. Sometimes life can be so tragic but I guess that is what makes it life. My friend's sister (32) just died of cancer and my neighbor lost her nephew (16) in a car accident. My dog of 8 years died last week and I cry every day so I can't imagine haveing to cope with a loss so much greater. When you yourself are in physical pain it makes the emotional so much harder to deal with so I will be praying for your physical and emotional healing. I hope this new doctor can help you thru this trying time. I recently saw my grandmother who has been in a nursing home for 2 years after having numerous massive strokes. She can't eat, talk, move, and has no bladder control. She has lived like this for 2 years and it's hard not to question "why?" I know God has a master plan and there is a purpose for everything. One day when we meet our Maker we will understand. Until then, we just have to trust that the One who created us and loves us will help us to heal. My prayers are with you.Kelly in Dallas
Re: Another MIA report
Dear Kelly,I am so sorry that your dog is gone from your life. We who love our animals so much know that losing one of them can be as painful as losing any other family member. And I do not think that statement shows any disrespect to humans. This was a part of your family who had no doubt given you many hours of love and comfort. I hope that, in time, you will be able to welcome another furry friend into your home. Sally in Idaho
Re: Another MIA report
Thank you so much. We had 2 dogs and Cinder was 8 1/2 and Ashes is 8. Luckily Ashes has never had anything more than an ear infection so hopefully she will be around for a long time. Cinder had pancreatitis and we decided 2 months ago when she was in the hospital for 2 days that we wouldn't let her go thru that pain again so Thurs when she started howling in pain and tried to bite me when I went to her I knew it was time. She got me thru some rough times several years ago when I miscarried twins, had some fertility problems afterward, and then had problems with my pregnancy with Morgan (now 6). She just laid in bed with me and licked my tears so she will always hold a special place in my heart.
Re: Another MIA report
Hi Delaine,
I'm so sorry to know you are facing so much hardship. I lost my Dad in 1982 to cancer and my Mom in 1987 to complications of rhumatoid artiritus. It's so hard to let go of the people who brought you into this world and nourished you to adulthood, no matter what situation you or they are in.
Tomorrow is our 35the anniversary, and I'm thankful that we've survived all that time has given us. We've had many good years, and a few bad with all my health problems. It's good that the bad times have been fewer than the good times.
I hope things will look up for you soon.
Evelyn
Re: Another MIA report
Deliane, I am kind of new to the BB but I will certainly keep you and your family in my prayers. I lost my parents several years also, both to cancer at different times. It is really hard. I was able to spend quite a bit of time with my mother before she passed away. I certainly wouldn't trade that time for anything.
I have been enjoying reading about everybody's gardens. I have a small vegetable garden & a few flowers. I really love flowers, but get involved in so many other things that my flowers sometimes get full of weeds. This year I have mostly been concentrating on trying to get grass to grow on the small hill next to our driveway. Most of our neighbors have given up and planted flowers on theirs. The problem is that it is in the sun most of the time & so you have to have grass that won't die in hot dry weather, which is what we have a lot of here in Kansas. This year it has done pretty good so far.Billie
Re: Another MIA report
Dear Delaine,I am sorry to hear of your mother's illness and all the new stress in your life. Your family will be in my prayers. I hope that your daughter and grand-daughter are still near enough to bring "young" visits into your life. They will probably brighten things up for your mother also. Take care of yourself and don't try to do too much. Hugs,
Sally in North Idaho
Re: Another MIA report
Delaine,Don't know you very well yet, but feel that as a fellow sufferer of Fibromyalgia and BEB I know how difficult your life is already. Adding a sick parent is really tough. I lost my mother about 4 years ago and it is still hard to deal with. She was in Calif and I live in Pennsylvania. My husband and I went out for about a week when she was critical in the hospital. We had to leave before she passed away. That was the hardest thing I have had to do. I know it is hard but I would rather have been there with her at the end than to have had to leave her. My prayers are with you and your family at a very difficult time. Coleen in Central PA where the eyes are getting worse and I am looking forward to the Botox a week from tomorrow. Take care......
Re: Another MIA report
Greetings everyone. I have not been on the BB for several months, however have caught up on the posts today, and see that things have continued pretty much the same without me. I made a conscious decision to put BEB on the back burner after a close family member told me she was sick of hearing about it. After some thought about it, I realized that I had let it kinda take over my life, and I just decided I was going to start living my life. I get the botox every 60-75 days, and I think I am now the best I can be. I am on minimal meds, and feel better (less drugged) than I have in the past. I have put my friends and family on my priority list and am gardening in a major way; which I enjoy very much. Happy July 4th to everyone.
Re: Another MIA report
Hey Joanne,
It's so good to hear from you. And better still
excited to hear you sound so good. You are not BEB,
you are Joanne, welcome Joanne :-)))
Mindy
Re: Another MIA report
Hi Joanne
I can relate to what you said about your family member saying that they were sick of hearing about it. I decided a couple of years ago to stop making my blepharospasms so important to me. Mine dosen't consume my life and I have a lot of other things that I want to do. It is really hard to not make it important when you can't see well and your face spasms. I don't have any close friends with blepharospams, so most of the people I hang out with have a hard time understanding what I'm talking about, and sometimes they just look at mewhen I tell them I'm having trouble seeing. They can see that my eyes are open when I'm talking to them. I know they don't understand, so I just don't talk about it a lot.
Billie in Kansas where it was in the 90's today. Pretty humid also.
Re: Another MIA report
Hi Joanne ... Wonderful to "see" you again. I have missed you and was worried about you. I'm glad to hear that you are doing okay and keeping busy with the gardening you enjoy. Take care and check in with someone now and then so that we know all is well with you.Sally in North Idaho
Re: Hi Joanne
Nice to hear from you Joanne. People without beb sure don't understand this condition do they? That's why this bb is so important - we do - and we can say things to each other that we can't to some who haven't lived in our shoes. Glad you are doing well - hope you had a good July 4th.June in Toronto
Joanne, I understand
I had missed hearing from you, but I have been so busy with my flowers and family that I had little time or energy for the BB. I can relate to what you said about it taking over your life and people don't want to hear about it. Unlike Shirley's husband mine does not read the BB or seem very interested when I share funny stories...it's like ...I guess you had to be there. The BB has helped me through some tough times and I feel like I had something to contribute, but in my absence the BB went right on without me and no one seemed to have noticed too much where I was so I decided that maybe I was relying on it for companionship and my need to "help" others instead of focusing on my friends, family and life beyond the board. On one hand I love my BB family and miss the crazy jokes, but I was becoming glued to the BB a little more than was probably healthy or helpful to me. I checked in 2 to 4 times a day. I've backed off a bit by taking some time off from even checking daily and now I check several times a week instead of several times a day. I think I was spending less time on journaling and writing, exercising, and just general thoughts of health. I am thankful the BB is here and someone is always home and at times I want to be that someone, but I can understand how people need to drift away and make it less important as time goes by. Glad you are doing better.
Re: Delaine and Joanne
Hi Delaine,
I hope that you don't feel like you weren't missed. I have missed your posts and Joanne's. We can all contribute different things as we all have different areas of interest. You're right when you say that this bb should not monopolize our time. There is more to life than this bb. I don't check it nearly as often as I used to but there are still new people out there that have questions that need to be answered. Those answers shouldn't come from just a couple of people. A number of people hopefully would respond so that the new person could get a well-rounded selection of somewhat differing responses from which to choose a particular course of action.
Everybody is not always going to agree with what I have to say-nor should they. You both have a lot to offer to this board and I for one hope that you both continue to check in and participate whenever you can. You are providing an invaluable service.
Delaine, I assumed that you weren't posting because of your daughter and granddaughter moving in with you and being much busier than you had been-it wasn't that we didn't care that you weren't posting. I had definitely noticed but assumed that I knew the reason why. About once a week I decide to not post as much or as often and then I get back on and see that someone wasn't answered and it drives me crazy as I know that they are hurting and need answers or at least they need to know that someone cares and understands. At this point, I don't need this bb as much as I once did but others out there do still need it . They may not have anyone else or any other place to go so I keep coming back to offer support. Don't let it take away from your family but know that your input is appreciated and needed. I have missed both of you. Shirley in AR.
will always be checking BB
Shirley your were right to assume I've was really busy with the girls living here, my yard and trying to see and stay in touch with my Mom more. There were days I didn't have a chance to check the BB. And I know from the responses I got when I did check back in that I am missed. Thank God for the BB and those who are here to help those new folks looking for information and support and I will continue to try and be one of the people who is a part of this group. But what Joanne said really spoke to me, because for awhile I was really attached to the computer and it kind of took on a life of its own for me...filling my need to care for and about other people. That is not a bad quality to have, but I have a tendency to get out of balance sometimes and spend more time helping others when I need to be focusing on myself. Since the girls have moved out I have more time and energy and I've made a promise to spend more time on myself....trying new things.... I've got free access to an indoor swimming pool at Saturn and I've never used it and I know it would be good for my FMS and health if I would stop making excuses and GO! I'm going to my Mom's tomorrow and stay and help can and freeze somethings out of the garden. I've just mailed out 67 notices about my July 22 support group and I've kind of neglected the local people at times who need support too. So little sis, don't worry I'll be checking in and ya'll keep this thing a goin', ya hear?Delaine in TN where it is sweltering hot and humid.
Re: will always be checking BB
Delaine, I have missed you so very much but, like Shirley, I thought I knew the reasons why you were an absentee and I was comfortable with that. Please don't feel you are not loved and needed! I was going to wean away from this BB, and actually do look it up much less frequently than I used to. But then I will check in and see something that I want to respond to, or try to keep someone's message on the front page until a more knowledgeable person (Shirley?) spots it.I kind of think this BB thing is like the stages of grief: we have a tremendous need for it for awhile, then we become more confident acout our own ability to cope and are able to withdraw from it a bit. Some will, hopefully, stay around "forever" to help others, while some will feel they need to totally go on about another life. I hope things are working out well for your girls in their new home and that you are able to keep up with your mom and still enjoy time for yourself. Sally in Idaho, where it's hot enough but not humid.
Re: Delaine and Joanne
Shirley since I am new to the bb, I am just starting to recognize certain names. I hope none of you stop posting. There are probably a lot of things that are more important than the bb, but sometimes there isn't anything more important than having someone to talk to who knows what you are talking about and who can relate to what you are going through.
I appreciate all of the medical knowledge you have. Two of my sisters were nurses,and 1 is an x-ray tech. but since I didn't like gross things I decided to be a secretary.
I liked your turtle picture, he is pretty cute or was it a girl?
I forgot if I told you that my friend that lived in Arkansas now lived in Mabelvale. It is really close I think to North Little Rock. They lived in North Little Rock for 2 or 3 years before moving there.
Billie in Kansas where it is still hot but we did have rain last night
Re: Keep on Posting
Hi Billie,
I know that there are lots of people reading the bb but I do wish that more of them would post. It takes a lot of people to keep the bulletin board running well. I know that people get sick of seeing my name and reading my stuff all the time but I also know that it is important for people to have their questions answered as soon as possible. Many people that come to this site may never have used a computer before. Trying to find information and having Blepharospasm and trying to learn what to do with a computer besides dusting it can be overwhelming. (And, no, I do not dust my computer). Domestic goddess, I am not.I don't have a clue if the turtle was a male or a female. Anyone know how to tell? It was a baby and very cute so we will just let it be neuter gender. Mabelvale is in the southwest part of Little Rock so is very close. I expect you to let me know if you are coming down this way so we can get together for a little visit. Shirley in AR.
Re: Keep on Posting
Hi Shirley I don't get tired of seeing your name on the bb, your answers make sense to me. I miss being around my sisters to ask medical opinions. Of course they know nothing about blepharospasm, so they couldn't help me in that area anyway. I am new to the internet and I am not familiar with a lot of other things about my computer either. I use it a lot for some things. I type the church bulletin and calendar on it and stuff like that. Just dealing with my computer can be a challenge let along adding it to blepharospasm.
We came through Little Rock last fall and spent 2 or 3 days with our friends.
Billie in Kansas where it is still pretty hot, but I think a little cooler than yesterday.
Re: Keep on Posting/ shirley
you gently pick up the turtle's tail and look. if it's a girl; a very small G will appear in pink on the right side. if it's a boy; look on the left and you will notice a slightly larger B in blue.
Re: Another MIA report
Hi Delaine,
I'm sorry to hear of your mother's problems. I think that there are a number of us trying to cope with aging parents. We have finally gotten Hospice involved with my mother's care.
You will have to let us know how the holistic chiropractor works out. Do you have a new doctor, also?
I'll be thinking of you and hope that things get better for you soon.Hang in there and talk to us when you can. Shirley
Re: Another MIA report
Just this week I started seeing a chiropractor my husband has been seeing for awhile. About 6 weeks ago I started having really painful neck spasms on the right side from the base of my skull to my shoulder. I had never had anything that strong or painful with my fibromyalgia and it really shook me, because I began to think it might be the dystonia moving down. I get a massage every 2 or 3 weeks and the massage therapist works in this chiro's office 3 days a week. I was suppose to see my doctor in Columbia for Botox on Thur and her office called and said she was ill and rescheduled it until Tues. When I saw the chiro he asked who my neurologist was and when I told him he said he had heard she was closing her practice. I was going to ask her on Thur. so I asked the person who called to reschedule my appt. and she said the doc is moving to Florida. I've only seen her twice and received Botox once, but she is the one who suggested the small dose of Klonopin which has been helpful and she gave me 65 units of Botox in completely different places than I'd ever had and it worked better than it ever has. She also understood fibromyalgia so I am really disappointed I'm going to have to go to yet another doctor. I tried to call Thur and get appt. with the other neuro that I'd heard is good and she was out of town until Monday. I am going to see an MD who is also a Naturopath ND on Wed. who several members of my family have seen and want me to see. Hey what will it hurt and who knows it might help. I talked to him over the phone for 30 minutes after he saw my Mom, sister, and 2 nieces. I'll let you know how it goes.
--modified by Delaine Inman at Sat, Jul 07, 2001, 22:54:03
Re: Another MIA report
Delaine,
I can empathize with you. Everything always seems
to work out for the best, and that is my prayer for you.
hugs,
Mindy
Re: Another MIA report
Delaine,
Sorry to hear about your need for a new doctor. It is so hard to get into see doctors as it is when you have been with them for awhile and finding a new one is harder yet. I'll keep good thoughts for you and one that is just what you need.I was so happy to read your post because I also have Firbromyalgia and have been experiencing problems with my neck also. I have been finding that when I walk and my eyes are shutting, a lot of times my head and neck twitch to one side. I don't know if it is because it is from the eyes closing and my body is responding by my head tilting to the side or I was wondering also if it could be a new dystonia in my neck. I went to the dystonia website and saw a picture with the one involving the neck that looks like my head sometimes. I go see my internist on Wednesday before my Botox injections with the Neuro-Opth that afternoon also. I plan to ask both doctors about the head and neck thing and see what they say. If it is another one I don't think the neuro-opthal would treat that also, would he? My internist treats me for the Fibromyalgia and was trying to have the insurance company pay for massage therapy for me. They denied it based on it not be an approved treatment for Fibromyalgia. Should I ask him about the Chiropractor instead? Sorry for the long message, just curious about the neck thing. Coleen in Central PA where it is overcast today and not bothering me in the least. Now my eyes can rest from the brightness of yesterday.
Re: Another MIA report
My insurance will only pay for the initial x-rays with chiro and then my husband and I worked out a good deal with chiro to see us for 38.00 each twice a month. Rusty pays 60.00 for a full session of massage, but I get half session for 35.00 and she concentrates on my neck and shoulders, back, and hips. She spends almost a full hour on me and 90 minutes with Rusty. Insurance will not pay for massage either. So Rusty spends about 160.00 and I spend about 75.00 and we fill it is worth it. The MD/ND that I'm going to next week does not take insurance.(It is a long story. TN doesn't accept MD/ND practices so he is having to practice as a health consultant even though he has practiced as an MD in neurology and cardiology in California and Texas. His wife is a certified midwife.)We are blessed that with my disability income and his job we can afford it. We are so thankful! I am hoping the neuro doc I am trying to change to understands Fibromyalgia. My neuro/opth in Nasville wouldn't treat me for FMS. The movement disorder specialist she referred me to at Vanderbilt didn't treat it either. So I am praying hard that things will work out. We just invested in a new extra plush pillow top king size mattress with a firm underlying foundation to help me with soreness from FMS. I believe in both traditional and nontraditional medicine when used together is the best route for me.
Re: Another MIA report
Just curious-what are the main symptoms of FMS? My neck stays pretty knotted up and sore all the time and so do the muscles in my hips. I was also in a car accident 16 years ago and had a severe whiplash requiring 2 years therapy. My meige tends to keep my jaw tight which also tightens my neck. I get a massage when I can and recently saw an alternative muscular therapist (she worked at the Olympics) and that helped but she would work it out and in a week it was back. At $85 an hour I finally had to stop going because I just couldn't afford it and didn't seem to be getting any better.Kelly in Dallas (yes, we've hit 100)
Re: /FMS/Presevative Saline Alert
Whew, I couldn't afford 85 for a massage either. I'm lucky that massage in Columbia and Franklin can be found for 45 to 60 an hour and you can get half sessions and concentrate on the problem areas. Go to the Fibromyalgia website and they will have a chart of the body with the tenderspots on the body that will tell you if you have FMS. I got Botox in the right side of my neck today for the first time. She gave me 35 units around each eye and the rest in my neck for the spasms I've been having. Changing the subject I asked this doc (I've only received Botox one other time and I had EMLA 2 inches thick for 2 hours the other time)if she used presevative-free saline and she said no. I educated her on how painful that was and she said she had never heard that before. I'm calling Allergan Rep today and tell him he isn't doing his job! I had EMLA cream on or I couldn't have stood it. So everybody out there don't forget to ask your doc about that.
Re: /FMS/Presevative Saline Alert
My doctor also said that he'd never heard of preservative-free saline, and that it would make no difference.
Re:Presevative Saline Alert
Sally, it does, indeed make a difference and the information that comes with the vial of botox very clearly states that it should be reconstituted with "preservative-free" saline. Maybe that is why your injections have been so painful for you.He needs to be educated. The below information was copied from the Botox website. http://www.botox.com/index.jsp?cc&prescribing Prior to injection, reconstitute vacuum-dried BOTOX®, with sterile normal saline without a preservative; 0.9% Sodium Chloride Injection is the recommended diluent. Draw up the proper amount of diluent in the appropriate size syringe, and slowly inject the diluent into the vial. Discard the vial if a vacuum does not pull the diluent into the vial. Gently mix BOTOX® with the saline by rotating the vial. Record the date and time of reconstitution on the space on the label. BOTOX® should be administered within four hours after reconstitution. During this time period, reconstituted BOTOX® should be stored in a refrigerator (2° to 8°C). Reconstituted BOTOX® should be clear, colorless and free of particulate matter. Parenteral drug products should be inspected visually for particulate matter and discoloration prior to administration and whenever the solution and the container permit.
Shirley in AR.
--modified by Shirley-Arkansas-USA at Tue, Jul 10, 2001, 20:15:33 --modified by Shirley-Arkansas-USA at Tue, Jul 10, 2001, 20:17:36
Re: Changing doctors
Delaine, Sorry to hear that you will be losing a physician that you liked and was helping you. Hopefully, you will have the same success again. Let us know how your appointment goes with the Naturopath Doctor. Will you also be continuing to find a Neuro for your botox?Shirley in AR.
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