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Know of any good workbooks or books?


Poohbear
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Hey everyone!

I'm searching for a good workbook. I doubt there is one tailored to dysautonomia specifically but I'm wondering if anyone has used one for chronic illness in general.

I'm looking for something that maybe helps you sort out grief issues that come with losses from being sick, how to re-frame your life, make adjustments, different career choices to consider....that type of thing.

If you know of anything that was helpful and addresses these issues please share them!!

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Guest tearose

If only... no, I have no recommendations. What I have seen is a trend in recent years, for those with one kind of disorder like lupus, to form a website to discuss coping skills. Similar to our DINET site. I guess this has been where I have come to deal with my chronic illness. As I reflect on the two years I'm here, I have gone through the grief, the despair, the potsholes, the ascent, the repair....etc, all here. This has been my work book !

What a gift!

Maybe someone else has a book to suggest.

tearose

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There is a book available for download from the NDRF site called "The NDRF Handbook for Patients with Dysautonomias". It was written by Dr. Goldstien and Linda Smith. It gives a good easy-to-read picture of what's happening in our bodies, and how to deal with it. I printed it out when I first got sick and it really helped me understand my illness.

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Thanks dizzydame and briarrose! I already have the stuff from the below ndrf sites. They have helped in other ways but I'm looking for something that addresses more of the grief and loss issues and other emotional aspects of dealing with chronic illness.

Susie, thank you. I think this is more of what I'm looking for. I had come across this in my search as well but was also hoping there would be more material to choose from. I think I will look into getting this though. I'll let you guys know how it is once I've had a chance to review it.

Thanks for everyone's input and if you hear of any other sources please do share them with us!!

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Poohbear,

I have found a couple of books really helpful...especially one called "The Chronic Illness Experience: Living the Imperfect Life" It's not a workbook, but I LOVED it when I read it a couple of years ago (before I couldn't read!).

I am feeling really green right now, but wanted you to know that I do have a couple of idea and please, please noodge me if I forget to get back to you on this! Sometimes I need a good kick in the pants.

Also, did you do a search on this on the site? I do remember a discussion of books like this before and Sunfish listed a ton and so did some other folks. Try "Cereal for Dinner" in the search and see if you get a hit. If not, let me know and I'll look.

There is a book called Living with a Hidden Disability or something like that and it IS a workbook. But, I haven't done it.

I found the best 'hits' on this stuff on amazon. Like I know I like that one book and so I just went from there. Have you tried that? I love amazon! :huh: It's addictive.

I hope this helps a little....Let me know and I will try to get back to you more.

Also, I get books from the Library for the Blind to listen to and they have a LOT of books dealing with disabilities. Even things like sex and disability. So, I keep my eyes open when I get the new releases for stuff that might help. If I see things that might be applicable, I'll post over time.

Many good thoughts your way...I think grief is one of the biggest elements for me. Grief and loss.

Let me know what you find!

Emily

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Emily,

THANK YOU!! You are amazing that you remembered that title. I did find the link...here it is for others who may be interested.

http://dinet.ipbhost.com/index.php?showtopic=2768&hl=cereal

I'll look into these and let you know what I find out. It may take me a few weeks to sort through them but I'll definately provide feedback for anyone else who may be interested in this type of book or workbook.

Hang in there Em. I so wish I could make things better for you. I know we all struggle but it does seem you've had an exceptionally difficult time and I do admire your strength and determination and you are so good about helping all of us despite how crummy you feel. It means a lot to me and I'm sure it means a lot to many other as well!!

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I like the NDRF handbook. I also went to Barnes and Noble last summer to try to find something, anything, about "how to deal with a chronic illness" or some such nonsense, and apart from the fact that the woman I asked was quite rude about it, I looked in the health sections, conditions section, psychology, and self-help sections, and found nothing. So that Chronic Illness workbook sounds awesome. Thanks for asking, Pooh!

:)

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Hi all,

I have been searching for books forever. I know some of you see dr Grubb. A friend of mine lent me a book called the Fainting Phenomenon by Dr. Grubbs. Its actually a good read.

Another book is Handbook of the Autonomic Nervous System in Health & Disease. Author is Marcel Dekker.

There are also some medical articles by Icon Health Publications & Oxford University. I hope this helped some. They might be things you already knew about. I have not been able to find much of anything based solely on POTS, but the book by Grubbs talks about all of it.

JEN :(

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