So, I've had a lot of improvement in my health after being diagnosed with PBC and NAFLD (Fatty Liver Disease). People have asked me how I did it, so here's a little more detail. I organised it into 7 steps. Also, if you click on my name Chynablue it takes you to my profile and you can read my posts there to follow my journey.
Keep in mind that I caught PBC very, very early. I had no damage to the bile ducts yet. I also started addressing the fatty liver disease before significant scar tissue had formed. I do have some spots and nodules that show up on my MRI scans, but not enough damage to be cirrhosis. But, even if I were in the more advanced stages of disease, I would have followed the same path and seen improvements.
1) Diagnosis
Someone on the internet was quoted as saying "If you define the problem correctly, you almost have the solution." That's what diagnosis helped me do. I had symptoms - fatigue, digestive distress, abdominal swelling, high liver enzymes, etc. But no matter what I tried, I could not figure out how to make it get better.
I went to doctors, but a lot of them were not helpful because either A) they don't really know what to do, or B) these are general complaints that a lot of people have - its not like I am dying, need surgery, or have cancer. It was not until I fired my doctors and found new ones that I discovered that not all doctors are competent and have the problem solving skills and intelligence to offer any real solutions.
2) Education
Its not ok to leave it all up to the doctor because "they are the experts". There is no one-size-fits-all method that is going to cure people. Everyone's health is extremely unique to them. No one knows your body like you do, so you have to be the one that directs your care. Doctors work for you. You hire them for their opinion, even if insurance or the government is actually paying them. You have the right to disagree or question why they say what they say.
The only way to really be in charge of your own health is to understand what is going on - that means how does the body work? How do my organs work? How does the immune system work? How does the digestion work? All of it. Know it. Read and research and google search until the cows come home. Finding good sources of information is a huge tool in your arsenal, like the PBC foundation, the British Liver Trust, the Mayo Clinic, the National Institutes of Health, and most importantly: other people that have gone through the same kind of stuff that you are facing. If a website is selling something, chances are, it is biased, so maybe skip those.
I guess the quote here that would be most appropriate is "Know thy enemy". What are you fighting against, exactly? How does it work and how can you turn it around? Another quote that would be fitting here: "Seek and ye shall find".
3) Ursodiol and Vitamin D
Upon my doctor's advice, I stopped taking all supplements and started Ursodiol for PBC and Vitamin D because I had tested with Vitamin D deficiency. I researched everything on my own before agreeing with my doctor, just to make sure I knew what to look out for. I started feeling much better within a few weeks. There was an adjustment period to the medication, but it was temporary.
4) Detox, Stress Reduction, and giving the body a break
My diagnosis and research all pointed to one thing - my body was very sick. Not as sick as others, but way sicker than I realized. So many systems were dysfunctioning and my body was really hurting from it. Its not just about my liver. I needed to focus holistically on my entire body and mind. I had gotten used to feeling like crap everyday, I don't really think I understood how good I could and should feel on a daily basis. It was time to reset my health.
For some reason, I find it hard to be kind to myself. I don't think I am alone in this. There's always a reason to push yourself to do more and more. And that's not such a bad thing, but there needs to be a limit. When I think about taking time off from my responsibilities or removing things from my to do list, or removing friends that are demanding and drag me down, I feel guilty. Like I am being self centered or lazy. So, I ask myself, if you saw a child or a little baby with the same health problems as you, would you talk to that child the way you talk to yourself? Would you look at a fatigued child and yell at them to get up and get this stuff done? Or would you tuck that child into bed and make him some nourishing soup, maybe sing a lullaby? Show the same kindness to yourself.
So, I looked into revising my life to remove everything that stressed my body - physically, mentally, emotionally, socially, and spiritually. I edited out all the things that were not worth my time. My liver is struggling to do its basic job, so why make it harder by asking it to digest wine or a big steak or a stack of pills or deal with normal meals after only getting 5 hours of sleep? I looked into yoga, saunas, meditation, hypnosis, visualization, I tried a bunch of things. Some were stupid, but some surprised me and made me feel much healthier. I weeded out my "friend garden". Some people were not even really my friends, I had just been giving them the benefit of the doubt and assuming they were better quality people than they really were. I cancelled lunch dates and obligatory family dinners and opted to spend time in nature or gardening or at the spa.
5) Plant based diet
Veggies are where it's at. I threw away everything I had learned about nutrition and started over. Low fat, calorie restriction, calories in - calories out, low carb, no carb, "healthy" frozen entrees, the food pyramid... a bunch of misinformed garbage, the whole lot of it. There's tons of information out there - people are rightly pissed off that the government and the medical field either ignores nutrition or sends out bad information about recommended diets that is biased towards industries that fund all these "nutritional studies". I'm sure you will find some great sources of real information, but I really like Dr. Campbell and his China Study. He showed that rats with tumors that were fed a 20% animal protein diet kept their tumors. Switch them to 5% animal protein diet and the cancer was turned off. Put them back on 20% and the cancer comes back.
There is a direct link to the amount of animal protein in your diet and diseases that take advantage of your body when you are not healthy like diabetes, heart disease, cancer, auto immune diseases, etc. The same thing goes for processed foods and sugar. A plate full of processed foods like bread, mashed potatoes from a box, pasta, frozen potatoes, and poor quality meats is a plate full of dead materials with very little nutrition. Sure, it has protein, carbs, and calories, but compare it to a plate full of colorful vegetables, fruit, nuts, healthy fats like olive oil, maybe some good balsamic vinegar. Now here is a plate of foods that are alive and full of antioxidants, vitamins, minerals, and things that promote cellular health and repair in addition to protein, carbs, and calories. Which one is going to help your body and which one is going to be a stressful chore to digest?
I started adding the highest quality foods into my diet in addition to fresh plants like goji berries, seaweed and spirulina, Camu Camu (1 teaspoon has 1000% Vitamin C), raw organic cacao, green tea, lemon water, cucumber water, almond milk, cashews, avocados, and other super foods that make the most impact on my health. When I eat them, I imagine how nourished and supported my cells are as the nutrients circulate in my body, repairing cells and carrying out toxins. I bought a cheap juicer and did Joe's 10 day reboot plan, which is all plants for 10 days. It's free - google it. It was smoothies, fresh juices, soups, roasted veggies, etc and it was delicious. I haven't had cravings for crap foods since I did that. It detoxed my taste buds!
Now when I eat a processed meal or something high in sodium or high in animal fat or made from crap ingredients, I feel very noticeably bad. My body hates it!
6) Adding back gentle exercise when fatigue improved
It doesn't stop when I lose a few pounds, liver enzymes go back to normal, and I see about 30% improvement in the way I feel. I mean, that's a great improvement, but I want to feel 110%. That means I keep going, adding one or two goals per week to target the aspects of my health that bother me the most.
I saw lots of improvement after Ursodiol, Vitamin D, Stress Reduction, and high quality diet. As my fatigue started to fade, I added in exercise. I always thought exercise meant to run, sweat, breathe heavy, and push yourself farther than you feel like you can go. What was wrong with me? I don't have to run 3 miles straight 3 times a week. No wonder I hate exercise! I mean, yes high intensity workouts can be great but it's not required. Any activity is exercise. Yoga class is very relaxing, and it is great for the body. And it works better for me because if I push myself too hard, my body produces more stress hormones like cortisol that starts a chain reaction of inflammation, and I go right back into fatigue for several days. That is exactly what I need to avoid. I joined a gym and I try different things - yoga, pilates, spin class, walking on the treadmill. And I do things at home or on weekends - explore a park with walking trails, kayak down a gentle river, start a small garden in the back yard, organize a cluttered closet, etc.
7) Monitoring
I'm at a good place with my health now, but I want to steadily increase my health more and more over time. Every day I assess how I feel and why I feel that way. Every week I pick one or two goals to address the weakest part of my health. For example, this week I am meeting with a trainer to add some weights to my weekly exercise routine. Nothing major, just show up to the gym and leisurely use some machines and a few dumbells for about 45 minutes every now and then. Expert nutritionist Tana Amen says the biggest indicator of whether or not you will survive and thrive after a major illness (cancer, broken hip, etc.) is how much muscle mass you have because it acts as a reserve when you really need it. Last week, I tried 3 new smoothies with high doses of vitamin C because I had a bit of a cold. 3 of us in the office had the cold. Only one of us was smiling (it was me!). 2 weeks ago, I started taking SAM-e for brain, liver, and joint health. I am shocked at how well it works for my body. Next week, I am trying some new supplements. When my body was weak, supplements were not something I felt my body could handle. But I'm feeling strong now and I'm going to try it out, see how it goes.
Every 6 months I go to the liver doctor to check on my liver enzymes and maybe do some imaging. I feel so good in comparison to when I was first diagnosed, I want to continue this path and get better and never ever go back to the sad shape I was in before!
I hope this is helpful. If it is, make sure you share your journey, too so others can find their way!
Help needed: health, biopsy and lab contradict
So tired and itchy and tired of being itchy
My Experience so far with PBC
Just got diagnosed with pbc
