Heal Thyself

Kellie McRae avatar

by Kellie McRae |

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I have lupus, and I am a vegetarian … but that doesn’t mean I can heal myself. I find it quite interesting, the things people share with me. I know they are well-meaning, but it’s actually quite annoying. The articles, supplement suggestions, tea suggestions, dietary suggestions — all seem to come from healthy people sharing ideas on “how to cure” lupus.

I will be honest: I think, sometimes, actual doctors are useless in some autoimmune areas when you take into account the amount of education received on the well over 100 different autoimmune diseases that are out there. It is my understanding that it takes on average between three to five years for some to be diagnosed with lupus, but I also have enough confidence in the medical community to know that if there were a way to give us full relief, we would have it. Perhaps I’m naive, but if a plant-based diet were a cure, many of us could say we had lupus once upon a time.

I have been a vegetarian for over a year, and while I will say that I feel better than I did before I started, eating the way I do is not a cure. I live in Thailand, and tea here is a big deal. I’ve had turmeric, cinnamon, thyme, and a multitude of others … it’s not a cure.

The other “remedy” I hear a lot about is meditation — saying affirmations and believing I am healed. If this worked, again, so many of us would not be suffering. While I agree having a positive attitude is helpful, it is not a cure. Having a positive attitude for a lot of things just makes for a happier life, not a healthier one in the sense of battling chronic pain. I have gone on record saying I am chasing remission, but chasing it does not mean catching it, and I have been doing affirmations on my health since before I got my diagnosis. So, again, if this worked, I would not be writing for Lupus News Today because I would not have lupus.

My favorite (insert sarcasm) is the urging to stop taking the poisonous medicines. This, by far, is the most dangerous suggestion ever. The side effects of much of what we take can be scary, but the effects of lupus can kill. In my two years of battling lupus, I have read, researched, and tried a ton of things, including going cold turkey with my meds (I have shared this many times, and I always say, “DON’T DO THIS”). It was foolish of me and, boy, did I learn the benefit of my medications. What I have tried has not been because I thought it would cure me, but because I want to be as healthy as possible during this battle. I try to put things in my body that don’t promote inflammation, and I try to eat as naturally as possible to prevent heartburn and indigestion (I get that a lot). I don’t try anything without a plan with trackable progress, and I never anticipate a cure — I hope for relief.

Offering advice on a disease you aren’t invested in can be dangerous because you have no way of knowing how it will affect someone who really is battling. I eat the way I eat because I did a full elimination diet (which was no fun) and figured out what makes me feel good and what makes me feel bad. And I went cold turkey on my medicine and found out the importance of them, and then with the help of my doctor, we eliminated what I didn’t need and reintroduced what I did. I really didn’t want a handful of “poisonous medications.”

What you need to take from what I am saying is that we are all individuals. What works for me may not work for you, so taking blanket advice about a cure from people who have no clue is dangerous. I can tell you what works for me but I cannot, even as a person battling lupus, tell you what is best for you. This is something that you and your medical team need to figure out. Beyond that, take these articles, supplement suggestions, and well-meaning advice with a grain of salt. Please remember what is at stake here … it is literally your life.

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Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to lupus.

Jill Blackstone avatar

Jill Blackstone

I'd say the most important point you made -- and I SO agree -- is figure out what works for you. Every case is different, so every approach has to be different. I tried gluten free. I was a terrible vegetarian for 26 years. I wound up having an IV iron infusion for severe iron deficiency and was ordered to get animal protein into me. So I do, carefully and ethically aware.

But meditation -- YES. And here's why it works, for many. Not preaching but it changed my life. Because when I'm stressed or upset, my adrenalin surges. And that is soooooooo bad for me. Gets the cortisol racing. Hard to recover. Flattens me for days. So meditation centers me. I still see a psychologist. I see see a psychiatrist. I still take medication to sleep because without sleep I'm useless.

So after years of lupus, after journaling and keeping track, I know that MY two biggest triggers are stress and lack of sleep, in that order. The rest -- sun, foods, etc -- I can usually bounce back from. But stress just lays me out.

Figure out what works for you. Know that every day will be different. Hang in there.

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Kellie McRae avatar

Kellie McRae

YES! Jill, you said a mouthful. We are often so hopeful of things that worked for others that sometimes without any real tests that it will work for us and that is never good. I take the advice of others with a grain of salt and will try things cautiously after doing a bit of research. We have the stress thing in common. I start my day with meditation and relaxation and I have narrowed my circle not to include people who seem to have a lot of drama in their lives. I have also learned to pick my battles, when something has the ability to anger me, I sit down and really try to ask what does the bigger picture look like. If its something that is a flash anger moment, I just let it go but if it is something that my have long term ramifications, I tackle it. It has really simplified my life and made me a happier person in the interim. Thanks for sharing your experience, I appreciate that.

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Chris avatar

Chris

Hello my dear;
As usual you are right on target. There are many diets out there ;many tested by doctors or even Rheumatologists. As many people know who live with Lupus it can manifest in different ways with each person.
Sure, there are common maladies however , the effect on our other health conditions and how we are affected by environment , stress, food and meds are individual. Just about the time I think I have things figured out for myself; my symptoms morph or manifest in a new way.
The biggest help to me has been having a Rheumatologist that accepts and helps me deal with all the unusual symptoms. Next having an Internist that is willing to admit that the list of symptoms is right in line with connective tissue disease. Also, I am blessed with specialists for those areas of health that require specialized care. I have a loving family and supportive husband.
I rely on other Lupus sufferer's to dole out advice and share stories. Other sources of info or advice I do not encourage.
Thanks again for reminding us that our health comes first and be cautious with change.
Best to all,
Chris

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Kellie McRae avatar

Kellie McRae

Thanks for that considerate comment Chris, we def seem to always be "evolving" in the area of symptoms lol Its frustrating at times but definitely makes this disease as individual as a fingerprint and we each have to be sure to pay attention to not accepting blindly what works for others as something that will work for us. Thanks for sharing.

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Caridad Mendoza avatar

Caridad Mendoza

Well said! I had a rather unpleasant discussion with a family member who I thought understood my illness, her advice was to stop taking all medications and lose 15 pounds, simple as that, so I asked her if she knew what lupus could do to my body if I stopped my meds, of course she didn't so AGAIN (her husband also asked the safe at a dinner) I explain what lupus can do to me and that I want see my grandbabies grow and my daughter have a baby, they don't get it! My worst issue is neuropathy which is limiting my activities because of the pain it cause, so vacations are out of the questions we used to travel together and this lucky person doesn't get it...

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Kellie McRae avatar

Kellie McRae

Caridad, one of the things I have come to realize, the folks who are "healthy" want easy ways to apply relief because they are worried if they get it, they will have to deal with all that you are dealing with. They are walking through life with the myth of "it won't happen to me" and they try to find ways in their own minds to make it easy just in case. We know what we deal with and I have learned to figure out who you can have a reasonable conversation with and who you cannot. Some people love being clueless and I am learning to respect their decisions lol

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