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.
9 comments:
Hey Carla;
What a freaky coincidence! I follow your blog every so often and you are such a good example to me. Today a good friend recommended the book to me "Cure Your Lupus Naturally", so I looked up "Cure Your Lupus Naturally reviews" and it brought me to your blog which you had just written today!!! God does have perfect timing!!! Thanks for outlining what was in the book, because I have done everything she has mentioned in her 30 page book, except the herbs that you don't mention. I am still on the hunt for herbs that will work for me for lupus, but at the moment, I am doing some alternative treatments for my adrenal gland that lupus decided to attack this month and makes me feel 90% dead. There are sure a lot more remedies and hopes in the natural health world than in the modern medicine world. The medical doctors just told me "if you won't take cortisone, you are out of our hands, and you just might die." So essentially, (Shut up go home and die.)Too bad the modern medical world and alternative world won't work together more. I would rather die of lupus than live with the side affects of cortisone, except for a 1 week pack that tapers off every year or so...but that's my choice. I have seen young women turned into old women in months due to steroids.
I need to pay more attention to your life and blog Carla. I have had a few near death experiences and I keep getting the impression that I am supposed to be more like you...but I haven't figured out all the pieces to how to do it with my given set of circumstances. Thanks for being you!
Blessings,
Bluebirdy/Sheila
At long last--a convergence of my two favorite lupus bloggers. I've always wondered what you thought of Despite Lupus. I get a lot out of reading both of you. You're the only two auto-immune bloggers I follow any more. And that says a lot about you since I have to wait so long (ahem) between your posts. I'd like to go on to compare and contrast your styles, but that'll just get me into trouble. You're both great and I appreciate the balance you bring to each other's approach.
@ Wendy
I think Despite Lupus is well-written and has a lot to offer. I like that it isn't bogged down in long drawn-out descriptions of her every symptom, and that instead of being a memoir, it's more about detailing everything that has helped her. I think it's a great book and has a lot to offer.
I don't crack the bible open very often but I love the passage about how we are all parts of one body, and how can the eye say to the foot "i have no need of you?"
Bluebirdy, it's nice to see your face and name again.
let's see what herbs did i not mention?
there was the
-liquid DHEA, which I ordered on the website she suggested
-olive leaf extract (an antifungal, antibiotic that doesn't kill the good bacteria)
-MSM- not even sure what this does, but i'm taking it now!)
-fish oil
-probiotic enzymes
the additional one she suggested, which I just can't even stomach the idea of, is bovine colostrum, pre-milk fluid from a cow's utter. ew.
she also recommends sea salt, wheat germ, avoiding "naughty" foods, and doing affirmations.
the book also includes her own illness/ recovery story, of course.
Thanks Carla,
The bovine colostrum is like powdered milk in a capsule. I took it for 2 years with no help, but what HAS helped me is Ribose (see www.endfatigue.com) but buy it from a cheaper source online. cheapest I've found is www.citacost.com for ALL supplements with only $4.99 postage no matter how much you buy. This week I started adrenal support, they found so much adrenal exhaustion in patients with lupus, fibro, CFS. The DHEA I am getting tonight online. You have been about the third confirmation in 3 days that this is what I am short on, as are all patients with chronic pain. I started digestives, and wow what a difference in how fast my medicines start working and in nausea and I can see this could be a weight control device because the food gets digested into energy instead of just sitting and turning to fat. Too bad the modern medical doctors are not very open to these answers we find in the natural world. They don't have much to offer us that doesn't make us worse. Yes I love the scripture about the different body parts. I told another friend to day how marvelous it was that God sends certain people into our lives at just the right time, to tell them or help them in ways HE would if he were here, so we are being "his hands", however weak we are, but He doesn't ask for "Abile hands", just "willing hands", then He helps us use whatever abilities we have to serve others, which is serving God.
Love ya! Hope to be more like you!
Bluebirdy/Sheila
Hmmm. Just did more research on DHEA. People with high family incidence of DHEA should avoid any supplements with DHEA or even ones that convert into DHEA in the body. I have SOOOO much breast cancer in my family. Also other herb/drug interactions and side affects I'm not willing to deal with, and you have to take it for 3months to a year to even tell if there is a difference. A long time if you are having side affects or risks. I probably already told you this in an erlier comment, but you make me think of the person I was MEANT to be...but failed, and I am still trying.
Blessings, Sheila/Bluebirdy
yes Bluebirdy i do remember from the first time i was prescribed DHEA (It's not a prescription med, it's over the counter, but the doctor told me to take it) that there was a warning against those who had a family history of cancer.
and yes, adrenal fatigue, indeed.
and as far as being the person we are meant to be, we're all trying and we're all falling short. so we just gotta give ourselves some slack, and celebrate what we're doing right, however small we think that is.
thank you for saveing me the $20 (and time reading). I was going to buy Cheryl Dowery's ebook, but something (i know probably God) told me to search a little more. like you, my wife and i are tired of "hearing about others curing Lupus" when we try every thing and get no results. i wish people would be more honest in thier claims instead of making a buck off thoses who are tired of beign sick and willing to try anything to feel normal agian.
hi pmamesa-
thanks for reading.
If you'll read between the lines of my posting, i do not think the book is a scam, or that there is no hope for lupus.
I do think these things help. Unfortunately, just like with prescriptions, we have to experiment a bit until we find the right combinations for our particular body and disease.
I'm happy to say I am on no immune suppressants, and haven't been for 5 years. And I was as sick as a person can get with lupus and still be alive. Stroke, kidney failure, congestive heart failure, anemia, etc. So, we don't need to give up hope. The choices we make and the things we put in our bodies do make a difference. We are not without hope.
If I were to give someone a first thing to try, I would eliminate diet soda and any other food with nutrasweet (aspartame) or MSG, and then get tested for celiac and gluten sensitivity. Those 2 changes alone got rid of my joint pain and migraines.
well wishes
Carla
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