Thursday, March 24, 2011

Recommended Reading - Sjogren's Syndrome

I have more scattered all around my house. And no, the library book is not overdue. I BOUGHT it from a used book store. Tsk. 

Recently I received a letter from Andrea, who has been experiencing Sjogren's symptoms for five years but only recently received her diagnosis. She described her feelings about becoming a sjoggie this way: "Seeing what my body is doing is like watching a science experiment unfolding and would be fascinating if it wasn’t happening to a living, breathing human!"

What an excellent observation!

Andrea asked for my recommendations for books about Sjogren's syndrome (see my list on my left sidebar) and asked me to whittle down my list to two definitive books.

Hm.

A great question. A difficult task. Everyone comes to this disease with differing levels of understanding about autoimmune disease, and each book seems to take a different approach in meeting those needs. For her particular situation, she chose The New Sjogren's Syndrome Handbook edited by Daniel J. Wallace, M.D. and The Sjogren's Syndrome Survival Guide by Terri P. Rumph Ph.D, and Katherine Morland Hammitt.

Andrea's question provided an opportunity for me to scrutinize my little library of books focused on autoimmune disease, and sent me off to search for more titles that may be of interest.

What books do you look to for good Sjs information? Which books have you read that you felt were useless or misleading? Or especially insightful?

Share them with us!

11 comments:

Leslie said...

Hi Julia--I also have The Sjogren's Syndrome Survival Guide, by Teri Rumpf, and refer to it often. By the way, I was JUST diagnosed, officially--it took this long for the SSB Antibodies to come back positive! My rheum. is still on the fence regarding whether or not I have Lupus, but I guess Sjogren's is a "Go".

Jenny Pettit said...

Well, I see it's already on your shelf, but my FAVORITE was "You Don't Look Sick". It was the only thing I read that both acknowledged my emotions about being diagnosed and what the future might hold while not terrifying me. Virtually all other books I picked up had me sobbing in 2 pages flat. But, I also think it may be different for someone a little older - we're all scared of what this might to do us as we age but I was afraid about even getting to (and through) college, etc. Or maybe it'd be exactly the same regardless of age, I don't know.

I also somewhat liked "Women and Autoimmune Disease", by Robert G. Lahita, MD - it's about a range of conditions, but maybe that's why I liked it. Without literally saying so, it helped me realize a) it could be worse, and b) people keep going; life keeps going. (The latter just comes by virtue of the way Robert tells the story for each patient/condition.) Oh, and that - he explains a condition by way of a PERSON with it, and that helps.

I've spotted at least two books from the SSF website I plan to get, I'll let you know how they turn out:)

Tricia said...

Thanks for the book suggestions. The only one I have read is the first Sjogren's Handbook. I wanted to share that I ended up in the hospital dehydrated this week, and I think maybe Sjogren's and taking Evoxac may have contributed. Just something for Sjoggies to watch out for. Always a challenge to drink enough fluid to stay hydrated, especially while working.

annie said...

Julia,

I have a ton of books on different health issues, but only two books on sjogren's, so far. I have "A Body out of Balance", by Ruth Fremes and Nancy Carteron and "The Sjogren's Syndrome Survival Guide" by Teri Rump and Katherine Morland Hammitt. Both are very good informative books, but I would like to add one or two more that have somewhat different information than these two books,maybe a book written by a patient, so we get the patient's point of view. Does anyone know of any such books?

Does anyone suffer from dizziness/light-headedness/objects seeming to sway back and forth? I'm tired of doing MD's rounds and no one has a clue what's going on!!Thanks.

Andrea said...

Annie - I think the book 'A Delicate Balance: Living Successfully With Chronic Illness' by Susan Milstrey Wells might fit the bill for you as the author has SjS and fibromylagia herself and she includes stories from many other people with other chronic illnesses. I haven't bought it yet, but it's on my growing list!

I certainly have had lots of dizziness since I have first been unwell. It comes in bouts lasting for a week or so and then disappears as mysteriously as it arrived. It is a really awful feeling - makes you feel out of control. I presume it is one of the neurological symptoms of autoimmune diseases, but haven't asked my Dr about it. I expect my Dr would say 'that's odd - none of my other patients have that problem', which seems to be a standard response!

Amy said...

The Balance Within was a great recommendation. I did however have a sobbing moment when I got to the book where we're told "it's all in our head".
I don't know about anyone else but I was asked if I was making up symptoms to get attention. I was in my teens.
I had a few days of feeling sorry for myself before picking the book back up. If I had read further it explains how our mind is involved.
I liked this book for it's description of every phase of research. (poor mice!)
I have The Sjogren's Syndrome Survival Guide also.

Jean said...

I found "positive options for sjogrens" and" a body out of balance to be helpful" I also got a lot out the the Sjogren's syndrome medifocus book.

hope this helps

Kelly said...

I have been trying and trying to post a comment here and am going to try one more time. Books that have been useful to me (still no diagnosis, but strong suspicion of Sjogren's) are The Dry Eye Remedy by Dr. Robert Latkany and Eczema Free For Life by Dr. Adnan Nasir. Good practical advice that actually helps symptoms of dry eye and the mysterious rashes.

Richard Troost said...

In The Netherlands are no books baout sjögren. Only we make a little informationsbooks wrote throughs sjogrenspiclaist and the are aviuable from the Dutch Sjögren assication. NVSP

Anonymous said...

I have been dealing with sjorgens for 15 years Lupus for 9. Somedays are harder than others...I just found these books looking forward to reading them. is there a support group on line?,

Susan B. said...

Have you been evaluated for POTS and similar "partial" dysautonomias? They are fairly common with Shogren's. DynaInc.org/dysautonomia is a good intro.

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