Re: Audio books
Thanks much, Mindy. I am going to check this out soon.Sally in North Idaho
Re: Audio books
They even send you a special recorder to play the tapes on!Dee in OR
Re: Password
Dee, Glad to see that you remembered your password. Now, maybe you will post and stay out of the alternative cornfields doing alternative things. I guess you could listen to audio tapes of alternative things while you were in the cornfield. That might be relaxing, unless you have allergies. Shirley in AR. not making any sense at all. Brain is mush again.
Re: Audio books
Does it come with headphones?Sally
Re: Audio books
Hi Sally,I was told, when I got mine, that I would have to supply my own headphones. The headphones jacks are there on the side of the machine and you can get headphones at a reasonable price. Or it can be used without headphones. Shirley in AR.
Re: Audio books
Dee, when you say special recorder, what do you mean. I get the tapes from books aloud and use my own cassette recorder. I have gone through three of them in two years as I use them so often. Actually, if I did not fall asleep listening all the time, I probably would not wear out the rewind button so fast. The poor machines don't stand a chance. I have just contacted the state library in New Hampshire based on the EMail site that Mindy listed. Hopefully, there readers are better than the ones that books aloud uses as they are terrible for the most part....Alan
Re: Audio books
I have been getting the audio book for a while now, and it is a fantastic way of "reading". When you sign up, you specify on their form the types of books you want to receive. If there is a certain book you want to read, you can call and request it. I have also heard that if the book is not available in audio, you can request to have it taped. I haven't done that, so that last sentence is hearsay. It is not only free to get them, but it is free postage to return them to the library. They send a catalog regularly of new tapes available. You can also have magazines sent to you. I get a Health magazine on tape and also National Geographic. graceanne in port orchard
Re: Audio books
Good information Mindy.
I also take advantage of this service. I just have a hard time finding "listening" time. The material is sent quickly and is very easily mailed. You do have to have a letter from your doctor which shouldn't be a problem for any of us. I used a letter that I already had when I applied for SS disability.Shirley in AR. where the weather has been beautiful but it is once again allergy season.
Re: Audio books
Shirley,
It's good to hear it's hard for you to find "listening" time,
that means you're keeping busy.
Certainly don't want it to interfere with your
meditation time :-)
Mindy in NY
Re: Meditation time
Mindy, will you never let up? :-) You are as bad as I am about the conference audio tapes which are still available (that you have never purchased) :-0I am keeping busy but I do take time out to rest my eyes and snooze. Lately, CNN has been on during this "quiet" meditation (?) times. Shirley in AR who has already rested her eyes for the day and now waiting on sons to come home.
Re: Audio books
The main reason we don't have time for "LISTENING TIME" is because it takes longer to get the regular housework done Takes me twice as long & my house isn't nearly as clean as it used to be. I am doing a little knitting however, stripped afghan. Have lots of yarn left after knitting several sweaters for Guideposts in the last couple of years. I have one eye that stays open most of the time.
Joann in Ark. where it's a lovely fall day.
Re: Co-Existing with BEB
Joann, I have to agree with you about things taking longer to do. It takes me longer to get up and be functional in the morning than it used to. My eyes don't work well at all in the mornings and I just kind of have to feel my way through things until the medicine kicks in and my eyes start working well enough for me to at least not hurt myself. I make it downstairs and get my Dr. Pepper (which does help), turn on the computer and start cleaning the bird cages and giving them fresh water and food. Then if is off to start some laundry or clean up dishes that I might have left from the night before when my eyes gave out or I just didn't want to do them. Then some computer time and before I know it, it is time for lunch and my medicine is starting to wear off. Another dose of medicine after lunch and at this time I try to take a little snooze or at least rest my eyes as most of the time at this point in the day they have about had it. Usually within an hour, I am functional again, so try to do some more household things or computer time. I try to plan ahead for our supper meal so that I can do little things in the afternoon to prepare for this to make it easier.
Basically though, (I know that ya'll are bored to death) I have to work around doses of medication, resting eyes, some good eye days and some bad eye days, household tasks, computer time, family time , shopping and just some free time. It does all take longer now and there are things that I can only do at certain times because of my eyes. Some things have to wait and then I find myself trying to play catchup when I'm having a good eye day and try to cram too much into a limited amount of time. I find that now I plan (or try to) my days around my Blepharospasm. I don't imagine that this is the best or most healthy thing to do but I find that it keeps me from being "slapped in the face" with my disability over and over again. I don't just go to the store anymore. I have to make sure that it is within certain hours of the day (when I hope that my medication will be working.) I don't really want to live my life around my Blepharospasm but it does make it easier for me. I know that many of you say to not let BEB or any other form of dystonia rule your life but I tried that and it didn't really work out well for me. I like to think of it as learning to co-exist with Blepharospasm while still living my life to the fullest degree that I can at this time. If things change, I will make changes so that I can still remain in control of the important things in my life.Shirley in AR. very thankful for all the friends that I have made since I have developed Blepharospasm. You are treasured.
Re: Co-Existing with BEB
Shirley, your post sound so familiar, it could have been written by me.
Just change birds to cats, Dr. Pepper to tea, little snooze to big snooze and forget the stairs altogether, we left the two-story behind for this house. Everything else fits perfectly.Christel, who is also glad she found you all.
Re: Co-Existing with BEB
Shirley,
You are Not letting BEB rule your life.
You are leaving the house and getting out of bed, it's not ruling you.
In the beginning many don't have a choice, myself included.
Working With BEB is just like anyone else living with any ailment.
Whether it's Asthma, diabetes, lupis, chron's disease, missing a limb,
and the list goes on.
For those who are realizing it takes longer to do a task than it used
to, take a look at others, and see that as we get older, most people
do take longer than they used to.
We did lose precious time when we were completely out of commission.
But thank God for the things we are able to still do.
Find something you enjoy doing, spend extra time enjoying each day.
Always look at "How far you have come"
Please get the book "Simple Abundance" you read one page a day.
Mindy in NY
Re: Co-Existing with BEB
Thanks Mindy, I'll get the book the very next time that I brave the shopping world. And one page is probably all that I could read a day. That is not on my list of easy things to do. I am much better than I was but it does still take the medication, too, and I was hoping to be able to decrease that. I did for a while but it is creeping back up there again. I'm in a negative medication mood right now and am rebelling against having to take it all. I go see my local MDS on Tuesday and will talk to him about the medication at that time. Shirley in AR. who is no longer completely out of commission and I am thankful for that.
Re: Negative medication mood
Shirley,
That's the most normal reaction.
None of us want to be on medication.
You like to tell it like it is, so here is a dose
of your medicine.
Today if you need the medicine, take it.
Tomorrow you may not need it.I left a space so you can read between the line :-)
Mindy in NY who is sending Shirley a big hug.
Re: Negative medication mood
Mindy,
You are being much too logical. Thank you for giving me a "dose" of my own medicine.Surely Shirley not Surley anymore. Thanks for the hug.
Re: Co-Existing with BEB/Phone is a wonderful invention
I'm finding that using the telephone saves me untold steps, stumbles, stress and sanity. That, in spite of the fact that all businesses and professional people are long distance for us. My husband tends to go ballistic over the phone bill at times, but I just try to explain that it probably saves on gas.Just finished a research session trying to locate an in-stock dorm fridge for our grand-daughter. I now have three places within one compact area that have them and I know the size and price at each place, so if I can hopefully get one of my sons to take time to go pick one up and take to her on Saturday. They told me they would do that, if I'd track one down. Now I just have to get my creative juices going and do my assignment for writer's group tomorrow. The assignment is: Write about a time when you were scared. There have been plenty of those and I have a thread going in my head, but am so sleepy from being awake nearly all night with a new pain that I just can't get going. I'll search out that book one of these days, too. Sally in North Idaho where it's anything but cool. Yesterday hit 89 degrees (record is 91) and today is to be 86. I'm so tired of this hot, dusty weather. We desperately need rain
Re: Co-Existing with BEB
Mindy, who is the author of this book and is it a devotional type book or a self-help book? What type of store might I find this in?Thanks, Joyce in NC
Re: Co-Existing with BEB
Joyce,
I'll include a link where you can read all the info.
It's not a devotional.
I read it years ago when Oprah recommended it.
This is the book that gave Oprah the idea of the
gratitude journal.
Mindy in NY
Related link: Simple Abundance
Re: Co-Existing with BEB/shirley
you are describing pretty much my life as well, do things wait for meds to work, do large motor movements (housework), take care of pets, write down things you need and hope your eyes are okay and you have enough energy to actually go get them when the time comes. plan something nice and have the weather or your eyes dictate " oh no, we're not going to let you do that" . write it down again and try again and again.it's gray here and overcast and rainy and autumn is here and it plays on my moods. my parakeet is an extremely happy and gregarious little fellow, he brings me up, also my older cat. she has long grown to love him.
Re: Co-Existing with BEB
I can relate to this, Shirley on a bit lesser level but the same, nonetheless. I am forced to plan on "bad" days and when I have good
ones, I used to cram and try to catch up on what I couldn't do the other
days which is what you mentioned. I have recently learned not to do
that since I think it exacerbates the vicious cycle of this disorder.
So I do more on the good days but enjoy it and take some time so and
that seems to weaken the bad days some if that makes sense. Since I am choosing to continue working, my options are a bit more limited, but I still have some choices. I have also learned more on this board and from the conferences than from any doctor. I also treasure I have a
resource which helps diminish my fears about all of this. Since my last injections, my breathing is a bit better but my med dosages are
the same. I am getting used to the gauze and mask at night and use
drops frequently during the day. I am still experiencing a bit of
blurriness so at times I find a magnifying glass helps. I am almost
3 weeks into the injections and am curious how long they will last
and how the changes come about. My current neurologist wants to see
me next week for a follow-up appt. to determine how I am doing so I
will have some questions ready for him then. Take care all. Joanne M. San Diego, CA
Re: Knitting and co-existing
Hi Joann and Shirley,Joann, I am proud to actually "know" someone who participates in the "Guideposts" knitting project. It seems such a worthwhile endeavor, and such a low cost way for many to participate. Shirley, I agree with you that to a certain extent it is much easier to let our BEB "rule our lives." I don't mean that we should sit around and moan, and I'm sure none of us is guilty of that! ... but it just plain makes our lives go more smoothly if we adapt to what our eyes will allow us to do at certain times and try to work around that schedule. I've found that there is little to be gained by fighting it and trying to bull my way through with something that is too difficult at that time (or perhaps, ever). It makes me a pretty nasty character to live with if I try to do it my way. I think it takes a while to come to this realization, though, and is all a part of the grieving/accepting/adapting process. Sally in North Idaho where it is a sunny, beautiful, warm firs-of-fall day that makes one think that all should be right with the world.
Re: Knitting and co-existing
Pardon my ignorance, but what is the "Guidepost" knitting project?Christel in Ca. worn out by a three and a half year old.
Re: Knitting and co-existing/Joann in Ark???
My memory is a bit foggy on this, but as best I recall it began with a story some woman submitted to "Guidepost" magazine a few years ago about knitting sweaters and donating them to the needy. The project snowballed and has continued. I know there was more to it than this and that the sweaters went to a definite source, but I just can't recall. Anyone else out there with more recall on this?Sally in North Idaho, where it's a sunny, warm fall day
--modified by Sally - in - Idaho at Sun, Sep 23, 2001, 15:39:27
Re: Knitting and co-existing/Joann in Ark???
Christel, you are correct. Sweaters are knit by volunteers & given to needy children around the world. Over 100,000 sweaters have been made & sent. They go to foreign countries as well as places in the USA. New York and Wyoming are a couple of places within the US where they were sent. I knit a total of 7. They are simple to make if you can knit & purl. They're made in the shape of a T, so no increasing or decreasing involved.
Joann from Ark., presently in Shreveport staying with my 15 yr old grandson, while my daughter & son-in-law are in LasVegas for his mothers funeral (tragically murdered Sat.)
Re: My sympathies
Joann, Sorry to hear of your daughter's mother-in-laws death. I'm glad that you are able to stay with your grandson and lend support in that way. Shirley in AR. who can't knit but can crochet but haven't in a long time.
Re: Knitting and co-existing/Joann in Ark???
Joann ... How terrible for your family. You will be a big comfort to your grandson.Sally in North Idaho
Re: Knitting and co-existing/Joann in Ark???
Joann, I can knit and purl and make simple things. This sound like the kind of project I could easily do, since it requires looking down. How does one get in on this project? E-mail me, if you like.I would like to add my sympathy for the family tragedy. Christel in Ca.
Re: Knitting for Christel
When I get back to Ft Smith I'll send you a copy of the knitting instructions & where to mail the completed item.
think there are also instructins for crocheting the sweaters if anyone is interested in that. You may need to send me your address by e-mail.
Re: Knitting for Christel
Thanks, Joann, I'll wait till you get home again and we'll take it from there.
Christel
Re: Knitting and co-existing/Joann in Ark???
Christel ... I'm happy that you found a new project --- isn't it amazine what we learn on this BB? I used to be able to knit/purl and found it very relaxing. Wonder if I could follow instructions and come up with a sweater. All I ever made was a long scarf and almost one sock of a pair ... oh, a couple of pairs of slippers.Sounds like a soothing winter project. Sally in North Idaho
Re: Knitting and co-existing/Joann in Ark???
Sally, it does sound like a good project for winter, but I do prefer
crocheting, you see results faster, I am not the most patient person in the world.Christel in Ca. where it's been 95 again the last few days and I can't stand it.
Re: Knitting
I'm knitting up hats and mitts for the church's Christmas mitten tree - items are given to a women's shelter. I prefer to crochet but that, I find, needs more eyesight than I have available, so its knit and purl for me too! June in Toronto who has found one hobby for the winter.
Re: Knitting and co-existing/Joann in Ark???
Could you pleas send me the knitting instructions. If you need my snail mail address please just e-mail me. Ann Doyle
Re: Audio books
I have this service in Toronto, through the CNIB and Toronto Library system. I don't find I can curl up and listen though to them (sometimes listen when I'm having an eye rest) but mainly I play them when I'm in the kitchen cooking or something. I still miss not being able to read a good book, in a comfy chair, with a cup of java by my side!June in Toronto who went to the ophthalmologist today and couldn't read a single letter because of the blurring after botox, even though that was 1 month ago.
Re Blurred vision with botox
June, what does your doctor say about the blurred vision? To my knowledge, it is caused by botox getting into the muscles of your eye that help to control your vision. I would think that the sites that he is injecting could be modified in some way to help with this. I don't know for sure. Shirley in AR.
Re: Re Blurred vision with botox
Hi Shirley, the opthalm said I also "had a lot of guck in my eyes" from the night creams et al - this and the "floaters", the beginnings of cataract and the botox seem to cause the blurriness. Some of it disappears (usually) about 6 weeks after the injections. I'll check re the injections getting into the muscles that help control the vision - thanks.June in Toronto
Re: Blurred vision with botox
Hi June,
I just tried a new night-time eye ointment that is working better for me and is not quite so gunky. It is Tears Naturale P.M. by Alcon. I don't have quite as much trouble with things clearing up in the morning. I still have to really rinse the eyes with preservative free drops in the mornings and use a warm washcloth to wipe extra gunk away but this particular ointment has been better for me than the Moisture Eyes PM that I was using. It seems to dissipate a little quicker and isn't so thick. It may have more mineral oil than petrolatum. I can usually get almost all the gunk out of my eyes in the morning without too much difficulty.It sounds like your eye doctor might think that some of the blurriness might be caused by the cataracts, too. But if it goes away in about 6 weeks, that shouldn't be the problem, either. It is almost like your symptoms start to improve when the botox starts to wear off, although, I know that you have said that your botox lasts a long time. It might be working too well at first and then your eyes do better as the botox becomes less effective. I'm just thinking to my self. If that were the case, I would think that it would be worth a try to get less botox. But, then you might have to get it more often. Oh, well, just pondering your problems. Shirley in AR.
--modified by Shirley-Arkansas-USA at Sat, Sep 22, 2001, 17:18:17
Re: Re Blurred vision with botox
June, this is interesting and I'm curious to know what you learn about it. I also have blurriness after injections and seems to me when I asked dr. about it he said it wasn't caused by the botox but then seems like any question I ask about he tells me it isn't caused by the botox. I"m not questioning his judgement, its just that he doesn't seem to think that any of my symptoms are caused by the botox. I've looked in my botox questions and answers pamphlet and it doesn't list blurriness as a side effect. I had my 3rd set injections last week (Monday the 10th) and I've had blurriness almost since then and for the past 4 or 5 days I've had what feels like a rock in my right eye, I have a little itchiness and a lot of redness, some discharge which I've never had. I'm thinking I have an infection and when I called dr. he prescribed an antibiotic for it. Do you have any suggestions for me. I use refresh tears through the day, refresh pm at bedtime and occasionally I used celluvisc and try to rest on my back for a while.I don't use the celluvisc or the genteal gel often because they really mess with my vision. Thanks for any suggestions or thoughts. penny
Re: Re Denial of botox side effects
WHY NOT "question your doctor's judgement"??? I get TERRIBLE blurriness as a result of botox. It is like looking at the world through doubled up saran wrap! It starts as soon as the botox kicks in and wears off as the botox wears off. Coincidence? I don't think so! So it is not in your "Questions & answers about Botox" brochure. There are alot of side effects to botox NOT listed or "acknowledged" by Allergen. The first time I got botox, within 24 hours both my hands swelled up like balloons with welts on them. I've never had that before. I called Allergen and reported it and they denied any connection. Man . . . I can't believe the DENIAL going on in the pharmaceutical companies. But I guess that's why thousands of new drugs are "silently" removed from the market each year!Shanasy
Re: Re Blurred vision with botox
Penny,
Blurriness may not be listed as a side effect but double vision is. Botox is also used for Strabismus (lazy eye) and if injected into the wrong muscle or if the botox seeps into the wrong muscle can definitely cause vision problems.
The other aspect of it is that after receiving botox, you usually do not blink effectively and if you already have a problem with dry eyes, this is just worsened. The sensation of feeling like there is a rock in your eye and itchiness and redness might be an infection but it more likely is due to dry eyes. The discharge does sound like infection but I'd bet on it being started by a dry eye problem. If you are not using an eye mask along with your ointment at night, you really should. I also think that it is important that your eyes remain closed at night. Most eye masks will not keep your eyes closed. I have put an extra soft cloth under my eye mask just to make sure my eyes stay closed and don't dry out too much. Others have used saran wrap or have even taped their eyes closed.Shirley in AR.
Re: Re Blurred vision with botox
Hi Penny, I would question your doctor - you are the one experiencing the side effects from botox. I know my blurriness is caused (partially) from the botox, as is the sinus, eye pain headaches and more. I tell the doctor the side effects I have experienced every time I see him - he just writes it down in my file. As far as the eye infection is concerned continue to use the antibiotic, BUT make sure you are cleaning your eyelids every morning and, if you are using an eye mask at night make sure that is washed everytime as well. I truly believe the sweating at night under the mask (and not washing the mask) will cause infections. Take careJune in Toronto
Re: Re Blurred vision with botox
June, I am relatively new at botox, I didn't even get diagnosed with blepharospasm until March, I received my 3rd set of injections 2 weeks ato. I do fine the first few days and then I start with blurriness and just yesterday I began having double vision. Seems like the first month is battling blurriness and dbl vision and then I have about 5 weeks of being just about perfect and then I guess it starts wearing off. I've not asked the dr. about wearing a mask at night but when I called my optometrist back in March to tell him what I had been diagnosed with I asked him about a mask and he suggested I didn't because of bacteria building up because of the moisture. I have been meaning to ask my neuru ophth about it but keep forgetting, he rushed me through so fast this last time I didn't have time to ask anything. He beat me to the exam room with 3 students following and one student cleaned around my eyes and dr. gave the shots and that was it. I must not have the problems most of you girls do, I seem to manage well for the most part but I do want to all I can do for optimal vision. Most of the time I can focus in well enough to read and my vision seems good when I do except I have to keep doing it because of the blurriness. Guess I need to try harder getting eyes cleaned out better each morning. I do a lot better by using celluvisc at night and then when I wake through the night use the refresh tears that I use through the day, but after a few nights of this I feel I've been neglecting them and that they need more moisture so I only do this on Saturday so my eyes will be clearer for church. This is the third day with the antibiotics, yesterday evening my eyes were so clear but today they had some redness again. The antibiotic causes me to sting for quite a while. pennythe eyes of love see only beauty
Re: A lovely saying
Penny, what a lovely saying: The eyes of love see only beauty. We need to remember that.Sally in North Idaho
Re: A lovely saying
thanks Sally, It's a nice line to put on a watercolor painting for some of my friends at church that have eye surgery. Also I have one hanging on my wall. thanks again,
Re: Re Blurred vision with botox/Shirley's Pondering
Thanks, Shirley, for all the "pondering" you do on our behalf (your post is on page 2) we appreciate all your thoughtfulness really and truly. I tried getting less botox (I get 90 units each time) but can't function with less (even tried getting less more often and it doesn't work for me)- so I live with the blurred vision until it clears up (approx 6 weeks) - lesser of 2 evils! I understood blurred vision is a side effect of botox but not sure where I read this (perhaps on this board?) - anyway I get it within 3 days of the injections every single time so that convinces me it is a side effect (in my case).June in Toronto where its raining most of the day - everything is so green and beautiful - I love it!
Re: Re Blurred vision with botox/Shirley's Pondering
Thanks June for not minding my pondering. Sometimes, I'm just thinking on paper to myself and wondering how to solve or attack a problem or just throwing out things to think about. Sounds like you have tried the things that I was thinking of. "Great minds think alike".
I can't find where I have seen blurriness actually listed as a side effect either. The botox information, does talk about double vision as a side effect and we know that vision can be blurred by dry eyes or by excessive tearing. I know that the doctors at the conferences have talked about this in their lectures and discussed blinking and the tears that are produced and whether they are good tears or bad tears and the complexity of the blink reflex and how important a proper blink reflex is for a proper tear film. Oh well, I'm rambling again.Anyway, I'm sorry that you have to put up with the blurriness. Maybe we need other people pondering, too. Shirley in AR. having a cloudy and cool day.
Re: Re Blurred vision with botox/Shirley's Pondering
OK, I'll do some ponering, too. I've been getting Botox for several years, and in that time, I've had blurred vision a few times afterward, for several days. Most often, I don't. I do think it's a result of the shots, but I don't know why. I've had the same dr. doing the same sites for most of the time, so maybe it has to do with the medicine itself. It's not serious, though, and who knows? Whatever Works!! Mary
Re: Audio books
Thanks for the info Mindy. My mom told me she thought there was a library for the blind but as far as I got was looking the the Dallas phone book. I just started listening to books on tape a couple of months ago after not reading for 2 years and I love it!Kelly
Re: Audio books
Our local library has books for the visually impaired but so far I haven't checked any out. I like the idea. Wonderful idea.
Joann in Ark. where we're having a beautiful fall day.
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