Right now I'm in the middle of reading my 4th, 5th and 6th lupus memoirs. 7 if you count the Lupus recovery diet. (did you know there were that many out there? yup).
I try to read without an agenda, but the fact is I always have the same agenda: did they get better? How much better? What did they do that I would want to also do? What did they do that I wouldn't touch with a 20-foot pole?
OK so here's the list of lupus books I've either read or am reading:
1) Heartsearch
2) Lupus Novice
3) Healing Lupus
4) Lupus: Alternative Therapies that Really Work
5) Cure Your Lupus Naturally (an e book)
6) Despite Lupus
7) Lupus Recovery Diet
Here's a really really brief "what I get from this book" for each of them:
1) heartsearch- has settle for having to dial things back a bit on a permanent basis. Got some relief from eurhythmy, an emotional release technique that was big in the 70s but not so big now. if you really search you might find a group near you. Some of the buzz on the internet accuses it of being a cult (whatever).
2) lupus novice- believe it or not this person also used eurhythmy. maybe she read book #1.
3) healing lupus- here's a person whose lupus was really really bad and who claims to be completely healed since 1978 (!) by going through emotional release. she was on a lot of powerful drugs for a long time to control the illness, btu was never successful at cutting back the amounts until she had an emotional breakthrough via reevaluation counseling. her book is filled with writing exercises. she suggests putting together a book group to go through it together. i don't even know how to begin finding people with lupus who are both open to the idea, nearby enough to get together, and willing to work as hard as the book asks you to work, so i'm going through it alone. But I also put in a call and hope to join a reevaluation counseling group here in my town.
4) lupus: alternative therapies that really work. this one is really into detox, and herbs and such. it's been a while since i read it.
some very specific and practical suggestions in this one. need to reread it.
5) cure your lupus naturally (e book by cheryl dowery) i just bought this last night. can you tell i'm desperately searching for help right now? because i just can't stand the thought of going on prednisone, or worse back into the hospital AND on prednisone. I'd have to sneak out in my street clothes every night for dinner. just can't deal! Anyway, I was in a weak moment and bought this somewhat overpriced book online last night. It's only 30 pages and is priced at $29.95. But if you go to the webpage and wait a few minutes, a window will pop up allowing you to buy it for "only" $19.95. i figured what the heck, if it really has a magic cure then i can think of a lot stupider ways to spend $20. Her claim of a cure is not really accurate; she acknowledges that you still have to monitor yourself and pace yourself; you can't do her regimen of herbs, etc. and then go get a 60-hour a week job and run a marathon (why, after 18 years living with this illness do I still hold that up as an attainable goal? Well, I do). Most of her ideas I had heard before, but not all. Affirmations, of course, improve your diet, of course, check for allergies, yup (she has an interesting way of doing it at home, no cost); detox, yes, Fish oil and flaxseed, probiotics, DHEA yes (though I didn't have the more effective liquid form of DHEA). And she did come up with a couple herbs I hadn't heard of/ tried, and one that is so gross I won't consider it. Maybe I need to be just a little more desperate.
6) despite lupus. this book is very by the book. what i mean is, reading this book is like going to 6 years' worth of (good) support group meetings. She's going to try to help bring you back down to earth, which in many ways is good, but she repeatedly tells you not to waste your time on stupid things like trying to get cured of lupus. Maybe I'm just an ass, but I can't accept that there is no cure. I can certainly accept that there is no MD who has a cure, but I can't accept that there is no help for me outside of prescription drugs and trying to acoid stress and sunlight. Anyway it's a good book, I just take issue with that one point, even if I am causing myself needless suffering by refusing to accept my situation.
7) lupus recovery diet. here's another book i spent too much money on; i bought it as an e book. it has a number of testimonials and lupus stories in it. I've been living with it 18 years, I don't want to read yet another biography of someone's struggle with the same symptoms. I don't even watch Sanford and Son reruns more than twice, and those are funny. Anyway the whole point of this book is this: lowfat vegan diet. there. there are some recipes, etc., but if you just want the punchline, that's it. BTW this idea is the same as the one put forth in Eat to Live by Joel Fuhrman, MD
so in summary here is what we have so far from my reading in terms of how to get that nasty illness under control:
1) emotional release via eurhythmy (and prescription drugs)
2) emotional release via eurhythmy (and prescription drugs)
3) emotional release via reevaluation counseling (and prescription drugs, but she does permanently get off the drugs, for decades now)
4) detox and herbs and diet
5) detox and herbs and diet/ allergy avoidance and affirmations
6) drugs, stress avoidance, support groups, compliance with doctor
7) lowfat vegan diet
(and as a PS, though there's no book on it for lupus, there is low dose naltrexone, which I'm on, but that non-toxic drug is not suggested as a "stand-alone" treatment; It's supposed to be combined with supplements, herbs, diet modification, etc.)
there you have it. 7 paths to wellness, or at least not-so-sickness. Could they all be right? yes, I think they could, just as maybe as the Native Americans say (about religion), many fingers point the the same moon. Can I follow all those paths at once? Probably not. After all, I'm dealing with an illness! There's only so much of me to go around.
