OT September Chit Chat

[Howie]

I was the same Vicky, I used to love reading books. But somewhere along the MS journey, that ended.

[Cherie]

Jean is responding to the Dilantin and keppra and phenobarbital. They were able to get her into the MRI at 2 am today and it showed that the tumor is growing. It is in 3 lobes of her brain and is inoperable. I am not sure how to interpret all of this. I know she has been getting more difficult to deal with over the past few years but I attributed it to our parent's declining health. I think I will lose my sister soon as well.

[agate]

That is so very sad, Cherie. I hope that your sister will have a better outcome than looks likely just now. I keep noticing stories about people who've beat the odds--usually for no known reason. It just happens.

[agate]

...
Anybody else who wants to read Catterville, just email. If you can open a Microsoft word document, I can send it electronically to you.

I've explained to Cat Dancer that I'm a very slow reader but I'm finding "Catterville" so interesting that I can't wait to find out what happens and will soon be getting on with the rest of it. It's a charming fantasy. Thank you for being willing to share it!

[Jeanie Z]

:) I took Jamie to get her chemo disconnected. She has lost most of her long blonde hair. I don't think Jamie is aware of how much hair has come out.

The hospice nurse was there today and Andy signed them up for hospice. The hospice nurse will come back tomorrow and change her catheter. I am glad as Humana has really dropped the ball.

Also the nurse assured her they would help her to live pain free. That would really improve her mood as she is depressed by the pain which never totally goes away. She has a huge tumor growing around her hip bone and through the foramen (hole in it) and that is where most of the pain is.

I am very tired but I hope Jamie will feel up to going to the beauty supply where they have wigs, hair pieces, etc. Both her legs were quite swollen up to her waist today. I suggested she take a Lasix when she got home. She forgets to take them when her legs swell bad. Andy is off until Tuesday.

Take care everyone. Jeanie :)

[Howie]

Well, it's past everyone's bedtime, and this thong gets so...confining this late, so it's time....to go..... streaking....WHEEEEEEEEEEEEEEEEEEEEEEEE!!!!

[Cat Dancer]

That you so much Cat, but I don't read anything these days. With my vision, even reading the computer is tricky. But thanks for the offer!

I'm sorry about your vision issues, Howie, but certainly can relate! Cataracts in both eyes, and macular degeneration as well. Ugh. Cataract surgery is scheduled for the end of the month (one eye), and the second eye in October. No guarantee my vision will improve, but I'm hopeful.

[Cat Dancer]

You're welcome. Agate! :) yes, my book is fantasy, a little history, a bit of spirituality, a "reformed" prostitute, some archaeology....and cats that rule their world! :)

I must have WAY too much time on my hands! :)

[Cat Dancer]

Having vision problems myself, and it makes me really appreciate my Kindle. I can enlarge the type, change the background, increase or decrease the background light, all helpful for reading. I don't know how I'll manage if/when the macular degeneration become so severe that I can't read anymore. I'm not fond now of talking books, but guess I'll have to learn to like them..

Speaking of kindles, a friend is coming over today with her kindle. She got it for Christmas, and so far has only used it to play solitaire! I hope I'll be able to show her how to do other stuff. She is one of those "temporarily able-bodied" folks -- meaning no MS, no other health complications that should get in her way to learn how to use the kindle. Just one of those folks who needs hands-on help. Wish me luck!

Maybe by the first week in October -- after I've had cataracts removed from both eyes, my vision will improve. It's complicated of course by the macular degeneration also in both eyes, so no guarantees that the surgery will be effective, but I'm hoping it will.

[Howie]

Cat, I had eye surgery a while back, a detached retina. This doctor didn't want to knock you out for that surgery. It sounded worse than it really was. But I wouldn't want to do it again! I hope your surgery goes well, and your vision is restored completely.

[Cat Dancer]

Cat, I had eye surgery a while back, a detached retina. This doctor didn't want to knock you out for that surgery. It sounded worse than it really was. But I wouldn't want to do it again! I hope your surgery goes well, and your vision is restored completely.

There is NO WAY I'd let someone NEAR my eyes unless I was unconscious! I procrastinated a long time for even this surgery, at which I will be "moderately conscious"...whatever that means. They promise that I won't know that they're digging around in my eye, and when I regain consciousness, I should immediately be able to see the difference. I hope so!

[agate]

Having vision problems myself, and it makes me really appreciate my Kindle. I can enlarge the type, change the background, increase or decrease the background light, all helpful for reading. I don't know how I'll manage if/when the macular degeneration become so severe that I can't read anymore. I'm not fond now of talking books, but guess I'll have to learn to like them..

Speaking of kindles, a friend is coming over today with her kindle. She got it for Christmas, and so far has only used it to play solitaire! I hope I'll be able to show her how to do other stuff. She is one of those "temporarily able-bodied" folks -- meaning no MS, no other health complications that should get in her way to learn how to use the kindle. Just one of those folks who needs hands-on help. Wish me luck!

Maybe by the first week in October -- after I've had cataracts removed from both eyes, my vision will improve. It's complicated of course by the macular degeneration also in both eyes, so no guarantees that the surgery will be effective, but I'm hoping it will.

Seems to me that with a Kindle, as with an iPad, you still have a screen that's much smaller than a computer monitor screen, and enlarging the type is great but you can see only so much enlarged type in that smaller space.

With the iPad, it's great for games and email but I don't think I'd want to read anything very long on it for that reason, but it's new to me yet and I'm still learning what I can do with it.

Talking Books have undergone some improvements since switching to digital cartridges. No more tapes that get twisted! The cartridge player is lighter and easier to use than the old tape player was. And if you have a flash drive you can download many books and (free) magazines without needing to send them back to the library.

They have quite a wide variety of books to choose from. Every two months they put out Talking Book Topics, listing the new acquisitions, and you can get that in large print, Braille, or in recorded format. It's easy enough to place requests for books you want online. No sending in forms any more.

My Talking Book player follows me around every day. I listen to a book or magazine while ironing, tinkering in the kitchen, sitting around and crocheting, sorting pills for the week, and especially while going to sleep or lying down to rest.

You can set it to turn itself off after 15 minutes or half an hour so if you fall asleep it's easy enough to find your place in the reading material.

Talking Books have been a bright spot in my life since 1982. I was eligible for them because of MS vision problems and hand/arm mobility problems. You're qualified if you have trouble holding onto reading material. To qualify on the basis of vision, you definitely don't need to be legally blind.

And by the way I've known several legally blind people who did pretty well at reading when they put their mind to it. It was very difficult for them but they managed.

The "really" blind people, the ones who can't see at all--I'd find it very hard to be one of them, I think. I think I'd hate losing vision completely far more than losing hearing completely. I don't know. Either would be pretty bad.

[agate]

There is NO WAY I'd let someone NEAR my eyes unless I was unconscious! I procrastinated a long time for even this surgery, at which I will be "moderately conscious"...whatever that means. They promise that I won't know that they're digging around in my eye, and when I regain consciousness, I should immediately be able to see the difference. I hope so!

And did they tell you you'd need someone with you to escort you home?

When I heard that, in reference to cataract surgery that I didn't have, I thought that was starting to sound less and less like the fun experience the doctor had been outlining.

He'd been painting a glowing picture of life with perfect vision without glasses. Come again???

I pointed out that I'd worn glasses since age 9 and eye doctors have always remarked on how myopic and astigmatic I am.

Then he allowed as how, well, maybe I'd need those glasses after all. BUT they probably wouldn't need to be as strong!


Whoopdee-bloomin-doo! They'd still be glasses, wouldn't they?

--Don't mind me, please. I'm still sad about no longer being able to wear contacts, which did a good job of correcting my vision for 25 years.

I hope you'll go sailing through the surgery, Cat, as most people seem to do. I've seen neighbor after neighbor coming back from cataract surgery, and they all seem just fine.

[Cat Dancer]

Yes, having someone drive you home was raised. Of course I can't drive anymore anyway. What happens is that they do put you out, and when you wake up, you're a bit groggy...probably not good to be on the road.

I do wear glasses, trifocals, for distance/computer/reading. But my vision is no longer correctable even with glasses. So I'm hoping removing the cataracts will at least mean that I will be able to have corrected vision with glasses, at the very least. As for contacts -- heck, I can't even get eye makeup near my eyes! My eyes water when I see someone else take out/put in their contacts! I am tearing up just TALKING about contacts! :) Anyway, I have to say that I'm almost looking forward to the surgery, hoping that maybe everything I try to look at won't be a blur.isn'

As for the kindle, the size of the screen is about the size of a paperback. So if you read paperbacks, the size isn't an issue.

When I first started hearing about the kindle, I really didn't think I'd like it -- had to have a REAL book in my hands. Then I saw one, played with one, and fell in love with it.And I feel empowered, carrying my library around with me! :) It ,goes everywhere with me, and is pulled out of my purse (I actually went shopping for a purse with the primary criteria that a kindle could fit inside!) all the time. I have wi-fi connections for my doctors, hospitals, favorite restaurants, favorite stores (my husbands stores, actually -- Menards, fleet farm), and will read a few paragraphs waiting in line to check out at the grocery store!

[Howie]

I love my laptop! A 15.5 diagonal screen. I can enlarge text, but so far, "as is" works for me.