(no subject)

[deza]

I've had to cut down on my painkiller consumption to make it through to the next doctor's appointment. It's made me more aware of all the aches and pains and limits.

I can't hold on to a paperback book for more than twenty minutes or so before my hands just hurt too much.

Is there anything this disease isn't determined to take from me?

Comments

[maevele.livejournal.com]

i pretty much read exclusiely on my laptop now, because my wrists can't hold a book up for long enough

[deza.livejournal.com]

I can hold onto the laptop for about an hour, then I have to go flat for a while.

[bheansidhe.livejournal.com]

A kindle might be the answer. You can prop them up at the right reading angle. They're surprisingly kind on the eyes, too.

[bheansidhe.livejournal.com]

Reading stands are a great idea too. The reason I'm hyped to Kindles (having been on the scoffer side of the fence until recently, when I played with a friend's) is that you can hold 1000+ books on one device, and amazon.com has, literally, thousands of free titles, especially most of the classics.

Being real angry is good, too. I would be in your situation.

[deza.livejournal.com]

I wish I could afford a kindle. I still owe a huge amount of money to the kind LJers who helped me out in October, and I can't in good conscience get myself a new toy until I have that amount paid down considerably.

I've never found a reading stand that works in bed, but I'll have musicwolf keep an eye out for one when he goes to the bookstore next. And yes, he and I talked about the other situation. Thanks for checking. ;)

[hotcoffeems.livejournal.com]

Speaking for myself, that was a GIFT not a loan, and so if you were thinking I was on some list to pay back...scratch me off. I'm assuming I made that clear initially, but just in case...DON'T give me any money!!!!

[grail76.livejournal.com]

Can you deal with audio books? Esp. Cassettes?

[deza.livejournal.com]

I've never been a fan of audiobooks. I'm one of those readers who "sees" what I'm reading, and audiobooks don't have the same effect. Generally I zone out with audios.

And no, no cassette players here. :( Thanks!

[grail76.livejournal.com]

A shame. I've got many hours of audio books (from years of a 2 hours a day commute) mostly on cassette.

[hotcoffeems.livejournal.com]

The idea of getting a Kindle seems a good one. I know though it's not necessarily in the budget...but...hmmm...

OTOH, not being able to do something familiar and simple like sit down and read a paperback, well, it would piss the living shit out of me, just on principle, excuse my French.

[deza.livejournal.com]

I'm less than thrilled with the situation. I know there's something I can learn from this, I'm just not sure what it is yet. I'm not happy about being forced to be a spectator on life.

[squeezles.livejournal.com]

Hi...thank you for adding me. I lurked on your journal because a friend of someone on my friends list said that you were dealing with Ankylosing Spondylitis. I added you, because my brother has being diagnosed with this condition (early stages) and I was interested in reading about dealing with the condition from a personal perspective (not a clinical description in a medical text book). Anyway, I thought I should introduce myself and tell you why I was here.

Regarding the issue with not being able to hold books, would something like this (designed for people with arthritis mainly) work for you?

http://www.bluezap.com/?gclid=CJDI2fyzhJ8CFY0vpAodx1Iz2w

Other things I've read suggest propping the book up on a pillow on your lap if you are having trouble holding the book up.

[deza.livejournal.com]

Oh heavens, you must be terrified. *hugs* I am so sorry for your brother. I wouldn't wish this on anyone. There is some good news, though--I'm this sick because it took so long for me to be diagnosed. I have a cousin who was diagnosed at 19 when he was drafted. Since he was diagnosed so early and has been managing the condition ever since, 50 years later he's in much better shape than I am. He walks with a cane, he has some pain and fusion, but he's still managed to lead a very full, active life. The condition has never sidelined him.

I'd highly recommend both you and your brother check out the KickAS forums. There is an area there for family members and support, so you would not be the only loved one checking in. There are a wide variety of people with AS who post regularly, and much discussion over various diets and homeopathic as well. It always helps to know there are other people going through the same experiences. *hugs*

[edith-jones.livejournal.com]

A lot cheaper than a Kindle account is one of these. This reading stand doohickey is from a Canadian supplier, but I'm sure you could get them somewhere in the States, and for similar dosh.

I'm sorry that simple things like reading have become so difficult for you. I'd be weeping. You're incredibly brave.

{{{{hugs}}}} from Allie.

[deza.livejournal.com]

Oh, I'm crying over this. A lot.

The one problem I have with bookstands is finding one that still works when I'm laying down in bed. Particularly without the painkillers, I'm spending quite a bit of time flat right now.

[frodo-esque.livejournal.com]

I read your last response to one of my comments (detailing your disease), and I didn't have adequate time to respond. I'm so sorry to hear about the details of your diagnosis; I am keeping your in my thoughts and prayers.

[deza.livejournal.com]

*hugs* You're in mine, too.