Some of you have been following my recent struggles, fighting off a lupus flare while trying to avoid going on prednisone and losing my hair, gaining weight, and turning into a raving lunatic (gee, what's so bad about that?)
For the last 3 months I was on LDN (Low dose naltrexone), which has worked wonders for a number of people, particularly those with autoimmune conditions, and especially those with lupus. But for whatever reason, it was not helping me. In fact, my test results got worse. There are those who say I didn't stay on it long enough, and those who say I might have a thyroid problem, and those who say it's a candida (yeast) problem (that interferes with the LDN's effectiveness). But bottom line, as long as I was on LDN, I could not take any narcotics for pain, and since I don't have anything over the counter that I'm allowed to take that actually works for pain, I figured 3 months of constant pain with not relief constituted me giving it a pretty good chance to work.
Now, I'm not saying LDN doesn't work, or even that it wouldn't work for me, but it isn't working for me right now, so I had to change course. Maybe once I finally clear up all the yeast, I'll go back on it. Meanwhile, I figured, I created a remission last year using just chi gung, gluten-free diet, no nutrasweet, and acupuncture. I got discouraged because my remission only lasted 6 weeks due to a combination of stress and a black mold exposure. So, I guess I wanted an easy answer- just take this non-toxic drug every night for the rest of your life, eat and do whatever you want, and never have another flare. I wanted a magic pill (or in this case, liquid).
Well, as I've stated before, thankfully there are plenty of choices out there for paths to healing, and I'm going back to the one that worked for me before: acupuncture & chi gung. i've added some herbs I read about in "Cure Your lupus naturally," and I'm still gluten-free and nutrasweet-free. And it only took one acupuncture treatment for me to feel a little better. And now that I've had 4, I feel a lot better.
A word about acupuncture: some MDs also do acupuncture, but the only training they've had is a weekend clinic. "Real" acupuncturists have 4 *years* of training. Sadly, insurance will pay for the MD acupuncture but not the more effective real acupuncturists. So, good acupuncture is an out-of-pocket expense. Which is why I also do chi gung; it has the effect of very gentle acupuncture and you can do it yourself for free, and maintain your level of wellness between acupuncture visits.
A good acupuncturist is Chinese-trained and board approved by the NCCAOM. Go here to find one near you: http://www.nccaom.org/
So, between the acupuncture and being able to take a narcotic when I'm in pain and can't otherwise sleep, I feel like myself again. I was really in a pit of despair after months of non-stop pain, and was losing my sense of humor, and becoming hopeless and defeated. That is so not me, but it goes to show you, a person can only take so much. Why suffer? My goal is to again get all my tests to turn around to "negative" (in this case negative is a good thing), to feel energetic, and to maintain the remission indefinitely.
There are 2 other elements I also want to deal with: emotional and diet. Although I avoid a lot of nasty things like gluten and sugar and nutrasweet, I need to eat a lot more fruits and veggies. Which is why I may be purchasing Montel Williams' healthmaster (an industrial blender basically)... Secondly, I'm trying to get into a reevaluation counseling group. If I do either/both , I'll keep you all posted.
6 comments:
Thanks for sharing what's been happening with you. My lupus symptoms seemto have improved a bit in recent months, though I'm still on 14mg of prednisolone, hmmm. I got a flare yesterday though and I'm going to get allergy tested in a few days and I really hope its food thats causing lots of this coz otherwise I'll feel a bit helpless. I def think you should do the counselling. I went to a counsellor/naturopath who did Theta healing with me and I was crying the whole time like a baby but I seemed to get all this stuff out and it made me feel a whole lot better- even physically. Good luck:)
Hi,
I found the article interesting about the acupuncture. I have thought about trying it, but I am chicken. How do you do acupuncture on your own and get the needles.How has it helped you. I tried a vegetarian diet for a while and it seemed to help some, but I got discouraged trying to make different recipes.
chronic chick talk
Hi Mom's choice
I've never heard of anyone doing acupuncture on themselves. I'd say find a licensed acupuncturist via the board of acupuncturists.
It really doesn't hurt much. I fell more pain getting my blood drawn. A lot more. Some people don't feel the needles go in at all. They're really really thin, so much smaller than a blood-draw needle.
Yes the vegetarian diet is quite a change if you're not used to it. I'm still trying new things. It helps to exchange recipes with someone. I found I'd eat a lot more fruit when I make smoothies (yum) at home. I get very creative with salad, and just made a pretty tasty brown rice and steamed veggies with Bragg's amino acids (gluten free soy sauce). I made a lot fo that, and froze 6 servings so I can be lazy and just zap them when I'm tired.
Sometimes I buy Amy's frozen entrees. She has a delicious Amy's Bowls brown rice and veggies thing I buy several of every week.
And I buy luna bars by the boxful so I don't end up buying candy bars or potato chips when I'm out and about.
I personally found that I had to eat a lot of fruits and vegetables (I hated the taste of vegetables), remove wheat, and remove dairy (milk, cheese, yoghourt, cream and butter from cow, sheep or goat) in order to get better. Dairy was a big culprit. I bought a vitamix to make fruit smoothies and switched to unsweetened almond, soy and coconut - the drinking kind not the cooking kind - milks to put in my smoothies. I bought a juicer to get the vegetables and learned to make juices I like. My favorite is carrot, cucumber, celery, fennel (also called anise), kale or swiss chard, apple and orange. I didnt go completely vegetarian but ate meat only once or twice a week.
anonymous, thanks for your very useful comment.
I have gone dairy-free again myself, as of a few weeks ago, and it's nice to have people like you chime in as I'm struggling and tell me you've done it too and it helped you.
As you can probably relate to, no one else in my life eats gluten free or dairy free, so I don't have a lot of support. They're not mocking me, or undermining me, but they are eating both in front of me regularly.
I'm also learning to love vegetables. I finally figured out how to make kale taste good, and that felt like a major victory.
I also got a rice cooker and that's a nice no-brain way to cook up some whole grains. it even has a steamer top section so i can steam vegetables and make rice with very little effort. baby steps in learning to cook and enjoy vegetables. Thanks for chiming in- much appreciated!
I myself have celiac and my rheumatologist suspect lupus. So gluten is problematic for me, I have been gluten free for several years, anyhow I recently had a gluten cross reactivity blood test and found that i have many foods that i am allergic to. Apparently there are many foods that your body reacts to as if they were gluten. I am allergic to rice, sesame, hemp, quinoa, etc. all stuff i ate regularly on a gluten free diet, causing a lot of damaging inflammation. I definitely feel better since removing these additional allergens. So I hope this could be useful to others. Google "gluten cross reactive foods". Checkout cyrex labs they offer the test, the array 4 (and other interesting tests). This website explains it a little more and has a link to the blood test http://drbradyhurst.com/2011/03/10/breakthrough-in-gluten-intolerance-testing/?wpmp_tp=1. Hope this helps.
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