during a flare up with a teething baby and you can see it in both our faces. All photos of me during this time have basically no smile.
This post has been so, so long in coming…I’ve started a few times but had to stop because it was so emotional…which I didn’t even realize until I started writing about it. I don’t talk much about it here on in real life, so I think all my emotions about it came at once when I finally touched on it. I’ve been working through it and writing about it in small chunks, which has been therapeutic. I hope this helps some of you who suffer with similar things. Also, I want to make the disclaimer that I am obviously not a doctor, this is not medical advice, this is just my anecdotal experience. Also, I’d like to emphasize that illness versus wellness is highly individual and what your own body needs to heal and function efficiently again will be totally different from what others need. So here we go: this is my life with RA.
so so tired all the time
I was diagnosed with juvenile rheumatoid arthritis when I was a small child after a my mom took me into the hospital for chronic joint pain and stiffness. My mom chose not to pursue further treatment and wait it out and see if how often the symptoms would return. I never got them again that intensely during my childhood, but when I got pregnant at 20 I would get awful flare ups on and off for years which would leave me bogged down in chronic pain and fatigue for weeks. The doctors told me that since rheumatoid arthritis is a progressive disease (meaning it gets worse over time) and causes irreparable damage to your joints, that I needed to get on some medication to manage the inflammation. They pressured me to start with NSAIDS (like high dose ibuprofen) and adding in the stronger drugs if needed. Even though rheumatoid arthritis and other autoimmune diseases, are driven by INFLAMMATION, the doctors never once told me to modify my diet or look into herbal supplements. I took the prescription and used it to modify my symptoms as needed but would feel almost a hangover every time I had to take them. I’m stubborn about taking drugs- I don’t even use aspirin, ibuprofen, or anything except herbs so I really didn’t like having to take the medication but the pain was unbearable and I was scared. During my pregnancy with my son at 25, I moved to a primarily plant based diet and started to feel SO much better, more energy and less symptoms. However, I still had occasional flare ups, but just chalked it up to pregnancy- in hindsight it was probably the animal products I was still consuming.
pregnant with Vin
Right after Vin was born, I ditched the last of the animal products I was still occasionally consuming, which were pastured eggs and local raw goat milk (like a lot-ugh). Everything felt great for a while, but then my hormones went crazy and I had a lot of postpartum hair loss, lymph node swelling, chronic fatigue and exhaustion. I had also been taking the mini pill at the suggestion of my midwife and I think that contributed a LOT to this. Later I got off hormonal birth control and felt a HUGE hormonal shift for the better. I was so worried about these symptoms, and as a new vegan I was susceptible to outside opinions. I went to a few different natural healers for opinions: a naturopath, a holistic healer, and an Ayurvedic doctor. These people all told me the same thing: my hormones were out of balance because of my vegan diet and I needed to start eating “healthy fats” to get special nutrients found only in animals. Vitamin D, K2, B12, lysine, and omega 3s were the ones they told me I would be deficient in if I continued eating vegan. This made me so worried, especially since I had been breastfeeding all this time and I was told that I wasn’t providing the right nutrition in my milk. Looking back, this was ridiculous, because Vin was perfect and thriving on my vegan breastmilk, and I had tons of it- so much so that I actually was pumping and donating my excess milk to a milk bank.
This led me to begin to doubt my intuition. Less than a year after going vegan, I had a blood test which showed that my iron and Vitamin D levels were dangerously low, which freaked me out and further enforced the doctors views to me. In hindsight, I realize that Vitamin D is something many people (not just vegans) are deficient in due to sunscreen and lack of sun during winter. Also, Vitamin D is crucial for hormonal regulation- its actually more of a “hormone” than a vitamin, which would explain my serious hormonal issues at this time, in addition to the hormonal birth control. The iron thing I had already had with my non vegan pregnancy with Carmela, and I was borderline with Vin.
I unfortunately took the advice of the “experts” and went back to eating animal products, which was really hard mentally/morally. I tried to justify my decisions by buying “ethical” animal products, like local, pastured meat, eggs, raw milk, but I still felt intense guilt and disgust about it. I would cry at night over it. I started feeling a little better, though, and more energetic- BUT looking back, I attribute this to starting to take a Vitamin D supplement at this time as well, and evening primrose oil- which are both essential for hormonal issues. Also, I was making myself herbal infusions daily of nettle, hibiscus, and raspberry leaf and blackstrap molasses which brought my iron levels up.
Unfortunately after a short time, my RA acted up again, VERY badly this time- worse than ever before. Given what I knew about the progressive nature of my disease, this really scared me. I felt hopeless. My joints were super swollen, tender, painful, and my entire body felt inflamed. Even things like braiding my daughters hair or opening a jar would make me cry from pain and frustration. I would have to lay down and rest all the time because I was so fatigued. We would go on hikes and I would be bedridden for days afterwards, and anytime I worked it took me a full day to recover. The doctors prescribed me DMARD (disease modifying anti rheumatic drug) methotrexate + injections of Humira. These medications are super strong and can adversely affect your liver, bone marrow, cause birth defects. Plus they suppress your immune system, so you are susceptible to life threatening complications from infection and sickness. The doctors told me I needed to be on medication for the REST OF MY LIFE, even if I went into remission, to control the disease. Looking at the potential side effects, I felt a wave of panic rush over me. I asked them if there were any natural alternatives to this, and they looked at me like I was crazy. “The best you can ever hope to do is slow this down so you don’t lose joint mobility at a young age,” one of them said, looking at me with irritation. “Taking this into your own hands is extremely irresponsible.” I cried for half and hour in my car in the parking lot and went home absolutely petrified, feeling alone, lost and insecure. I was young! Why was this happening to me? It all felt overwhelming.
eating giant green salads with oil free dressing for dinner and starting to feel better.
I connected with a co-workers girlfriend who also had rheumatoid arthritis and reccomend a local community accupuncture clinic for pain and symptom relief. I went there the next day and had a really long discussion with the knowledgeable guy running it. He encouraged me to re think the birth control and my stress, and to focus more on food. I had Joel drive me to the library straight after that and I checked out every book I could about chronic pain, fatigue, mystery illnesses, inflammation and autoimmune disease.
juicing with Vin
I started to dig deep researching RA, chronic disease, and the link between diet and health. This led me on a kind of rabbit hole chase where the more I learned, the deeper I got and the more there was to be discovered. I read the China Study and the 80/10/10 diet and everything just made sense! I discovered NutritionFacts.org and looked into the Gerson Therapy, I watched every food and healing documentary I could find, and every book at the library related to chronic illness, which led me to finding the Medical medium book and implementing the protocol for healing he outlines.
giant watermelon juice
I realized that I had the power to heal myself or make myself more sick with every meal and I committed to doing everything I could to support my body to heal. This included realizing that my body had specific, unique needs- no one approach would be perfect for everyone. For me, my body tends toward hormonal issues and stress. Also, grains tend to make my body feel irritated. That’s why I support it every day by drinking my hormone supporting herbal infusions, taking a vitamin D supplement, knowing my limits/triggers for stress, and eating mostly whole fruits, vegetables, fats and legumes.
raw grocery haul with a lot of plastic
It took me about a year of serious dedication of juicing every morning, eating high raw, and doing an elimination diet to figure out which foods my body did and didn’t get along with. It was so challenging and really difficult at times when I would crave gluten, sugars etc when people around me would be eating it. Every time I slipped and ate something I knew my body didn’t like, the resulting pain afterwards was enough to keep me on track. It was a long journey but so worth it.
I continue to get regular check ups and blood tests, especially to make sure of my vitamin D levels. Thankfully everything has been good so far, and my doctor can’t believe it. I’ve been in complete remission for a little less than 3 years now.
sooooo much fruit which I found so therapeutic for healing
My main tips if you are struggling with an autoimmune disease:
-get your gut right. Personally I felt that my symptoms got much less pronounced when I focused on gut health. Soil based probiotics (these are the probiotics I used ) fermented foods (like kraut, kimchi, yogurt), eliminating irritating foods like coffee and gluten all helped a lot. Your gut is SO important and interconnected to everything else in your body.
-figure out which foods your body doesn’t like via an elimination diet (keep a journal). Some people with RA are super affected by nightshades (tomato, potato, eggplant, pepper, tomatillo)- personally I am not. For me, gluten, coffee, grains (except quinoa, millet, rice and buckwheat), processed sugar and especially animal proteins triggered intense symptoms for me. But maybe for you things are different! Our bodies are very unique. Experiment and listen.
chia mango turmeric pudding
-start your day with celery juice. This was one of the most effective things I did (and still do when I feel off). Celery is especially beneficial for arthritis and when drunk first thing in the morning on an empty stomach it works wonders. Read more HERE.
celery juice every morning
-consider following the medical medium protocol and if not, definitely a whole food plant based diet to see if it helps you. Processed foods make your body work harder than necessary when it’s already overloaded fighting inflammation and disease. Help it out instead with whole plant foods it can break down and utilize easily. Raw fruit and greens! Get them in everyday in large quantities if you can afford it.
another grocery haul with tons of plastic
– supplements when necessary. Things like soil based probiotic, vitamineral greens powder, spirulina, fresh turmeric and black pepper lattes, and iodine I found to be huge helps. But like I mentioned, your body may be different and need different supplements. Experiment.
-limit stress in your life. I know, easier said than done, right? But stress is the major cause of illness. It causes our bodies to be unbalanced and susceptible, so that disease can grow easily. Is it worth it? Learn to say a kind and firm, “no” to obligations/projects you know will put you over the edge. Refine your life and cut out things that take always precious time and don’t give you joy. For me, yoga and meditation in action were two essentials.
-search out acupuncture for pain and symptom treatment. This helped me manage pain in the transition. Sometimes insurance covers this too.
-this goes with a previous one, but realize the power of thoughts to create either positive or negative emotions and further encourage either positive or negative energy in your life. Consider eliminating phrases like “I can’t” “I hate” and other negative words. Choose to tell a different story. Also, work towards loving, accepting, appreciating your body.
Let me know if there’s anything specific you want me to touch more on and I can definitely follow up with a Q+A post or related posts. Happy Thursday and enjoy the rest of the week! Hope you are having a good one. I’m sitting on the sunny patio with Vin right now enjoying some tea while he eats porridge ❤ I’m honestly kind of dreading hitting publish on this one but…here goes. If even one person is helped by this it’s worth it! xx