Am I Optimistic or Am I in Denial?
I am on a journey. I’m chasing remission from lupus by using a plant-based lifestyle. I’m keeping a record of how I feel, my symptoms, and the food I eat. I have been a vegetarian for a few years. However, I’ve fallen off the wagon on occasion: I had a few bites of chicken, some fish, and — once — beef medallions.
I share this information because sometimes we judge ourselves harshly if we fall short of our version of “perfect.” We are human. Sometimes you will not hit the ball out of the park, but what matters is that you showed up to the game.
On a recent trip to the U.S., I went to the hospital to get follow-up results from an earlier trip. I had more bloodwork taken that showed my platelet counts were dangerously-low, putting me at a high risk of internal bleeding. My hope of remission began to waver.
I am a pretty optimistic person, but at times it seems that lupus is dragging me around like a rag doll. Lately, I have been questioning my quest. The idea of remission has kept me going for a few years. I practice daily affirmations for high energy, low pain, and remission. I know there is no cure for lupus, but there can be relief from symptoms.
Sometimes I wonder if I am optimistic or in denial. If I make it to remission it will be glorious. However, my current health issues are worse than when I started, and I’ve begun to question my choices.
I began this journey after speaking with other lupus warriors who had success with a full plant-based lifestyle. Their experiences led me to discover how certain foods could help our bodies to heal. But I am impatient. I don’t expect overnight results, but I’m not happy with new hospital stays, rampant inflammation, low platelet counts, and treatment options that take me in the opposite direction to where I’m trying to go.
I realize that remission is possible. But I’m wondering how my mindset fits with this goal. Do I need to keep my hope of remission alive? I will do my best to remain hopeful. I will continue to share and hope that what I offer will help others.
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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.
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Comments
Leslee Hare
Hi Kellie, I hope you're feeling better since your hospital post!
Sending warm words of encouragement and support. Your posts help me tremendously.
I was diagnosed about 4 months ago, after over a decade of inexplicable painful symptoms which were worsening. Piled on top of that and since then, new diagnoses of leaky gut, candida, an intestinal parasite, and now autism.
I feel your food battle. There are only about 12 things I can (should) eat & drink, and when I have an off-wagon day, guilt is the worst part.
Today is one of those days when I've made it in to the office, but wonder what I'll accomplish.
As a writer, I've been telling myself to share my experiences. This comment is my way of reaching out to connect, and getting that word-ball rolling.
I wish you the best on your journey to remission, and am honored to travel with you. Keep on keeping on!
Kellie McRae
Hi Leslee, I'm glad you finally got a diagnosis. Not knowing is bad enough and then having symptoms that can't be explained, I remember those days and I sympathize. Thank you for sending encouragement and I want to encourage you to put your experience to words or video if you are so inclined. I do a bit of both because its therapeutic and it helps others. I wish remission for us both, now that you have a diagnosis, it allows you to really dig into the research and learn what can help and what can truly hurt. I wish you the best and thank you for traveling this road with me, I wish we were on a different, happier journey but we will find our smiles even along the ugly roads of lupus.
TC
Hi Kellie, I've been a vegetarian for over 25 years now, 15 years before my first formal diagnosis. It began when I started in middle school, because, somewhat, I found that "those strange feelings go away when I don't eat meat."
I later realized those "strange feelings" were probably RA and lupus symptoms.
After many many trials, I found that going all organic improves pain and fatigue enormously. If I go without being all-organic for a week, I'm immobile.
Because I'm also undergoing treatment for the hepatitis B I contracted at birth, my autoimmune diseases have been flaring up like crazy due to the anti-viral medication's stimulation of the autoimmune system. After more trials and errors, I found that:
(a) going organic AND vegan helps;
(b) keeping a nutrition journal (I use the MyFitnessPal app) to make sure my nutrients intake is well-based is important;
(c) using a powerful blender like VitaMix to puree everything helps the body absorb nutrients more effectively;
(d) using good digestive aids makes me feel amazing (I use Enzymedica "VeggieGest" and Braggs Apple Cider Vinegar; lupies generally have low stomach acid and other digestive issues);
(e) taking a probiotic blend of Saccharomyces boulardii and Lactobacillus plantarum calms my whole system for some reason. Both strains are supposed to be very good for autoimmune disorders. (I use Jarrow Formulas "Saccharomyces Boulardii + MOS" and "Ideal Bowel Support.");
(f) seriously making sure EVERYTHING that touches my body is vegan keeps a lot of pains away;
(g) clean air and clean water are crucial. I now purifier everything and wear PS2.5 filtration masks wherever I got. I bring my own water at all times, because I realize just one mouthful of not-quite-clean water is enough to render me weak and largely immobile;
(h) taking Glutathione could help too, though it doesn't seem to work for everyone, but it works for me. Just make sure it's vegan and has no other things in it; those additional ingredients are often bad for lupies.
I know that's a lot, but, ever since I began this whole protocol 7 months ago, my conditions have improved enormously. Even though I'm still on the anti-viral, which is working on over-stimulating my autoimmune system and had rendered me mostly bed-ridden for the last year, on top of triggering multiple flares, but my lupus is actually heading towards remission since the protocol began, and all my bloodwork results have been amazing.
Even though I don't feel amazing yet -- I'll have to be on the anti-viral for another year -- at least life feels more bearable now, and my body actually begins to feel like my ally in this fight instead of my enemy.
I admire your courage, and I help you are feeling better now or better soon. :)
Kellie McRae
OH...MY...WORD!!! It is 3am as I am reading this and it took everything for me to remain in my chair and not start screaming, singing and dancing lol Every single time someone who is battling this crazy illness shares with me that I am on the right track with the direction I am going it just imbues me with hope! Thank you for all of the information that you shared, it will help me as well as others looking to adopt this lifestyle. I "made a mistake" and became a vegetarian, this time I am being quite methodical about going plant-based. I am currently doing an elimination period (which I am actually enjoying). I'm so excited to hear more and more stories of people who have found remission because of food. I can't express to you how this made my morning and when my neighbors wake up, I am going to do a proper celebration of this news. Thank you for being so willing to share. YOU ARE AWESOME!!!!
TC
You're the truly awesome one, Kellie, for being courageous enough to share your journey so openly. You've been courageous in your fight and have held onto hope so unrelentingly.
Your attitude has helped keep me going forward, when the pain from the current hepatitis B treatment (which is the third one in the last ten years) has almost made me want to give it all up.
A few more things that I forgot to mention:
(a) Aside from tracking almost everything, I found that it's also important to PAY ATTENTION to literally EVERYTHING that touches you. So far I've banished all products whose ingredients list includes "fragrance" of any kind, including aromatherapy oils. They affect the endocrine system's balance and are therefore symptom triggers.
The basic principle is: The shorter the ingredients list, the better it is for you.
And "organic" isn't necessarily better here, especially if it means it includes essential oils.
Simplicity is the key.
(b) Yoga helps, whether you have fibromyalgia and/or rheumatic pain or not -- extra helpful if you do, of course.
Because a lot of the discomfort that lupies experience comes from a disorganized autonomic nervous system, and because yoga helps gently rebalance the autonomic nervous system, a regular practice helps calm down the whole body like magic.
I do an hour a day. I use the Yoga Studio app. It's a subscription service, but it's cheap and very effective.
(c) Meditation helps, because it helps you shift focus and perspective. When you're mentally less occupied with lupus symptoms, it helps lessen the emotional and psychological stress, which in turn relieves physical symptoms. It's virtuously cycle.
I'm a novice, and I find the Headspace app's approach easy to understand and effective.
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I hope we both find joy in the little things that we can still partake in in life and go from here to a better future, one day at a time.
Thank you again for your courage. :)
p.s. I'm in Taiwan, which is why I post at odd hours. Because English is my second language, so please forgive me for the sometimes awkward phrasings and frequent typos. :)
Kellie McRae
The information you have shared has been so amazing. Stay tuned for my next article, it mentions the information you shared. I lived in Thailand for almost 2 years and I learned to really meditate there. I stink as far as yoga is concerned, I try to stretch first thing in the morning, I'm about as flexible as the floor lol being in Mexico now, I try to buy local fruits and veggies. With there just being me, some things go bad before I get to finish them but I at least know its not horribly treated with mass chemicals because those fruits and veggies last forever. Your "novice" information will help so many. I do appreciate you for openly and willingly sharing. As far as typos, English is my first language and trust me, if it weren't for having editors, you would probably be reading a mess :-) Thanks so much for sharing so much.