Archive for category Diet
If you live with a chronic disease, you’ve been told some variation of “you can cure your disease if you eat this or don’t eat this”. I’ve been told to eat ginger, turmeric, be vegan, go paleo, cut dairy, cut nightshades.
The list goes on, and I’m generally skeptical of these suggestions. But there’s nothing like mounting symptoms to get you to try anything.
So last fall, I decided to embrace the Autoimmune Protocol completely for 30 days and slowly add in foods. To help, I bought
- The Autoimmune Wellness Handbook: A DIY Guide to Living Well with Chronic Illness
- The Autoimmune Paleo Cookbook: An Allergen-Free Approach to Managing Chronic Illness
The diet is strict – essentially having you cut anything that could trigger a reaction, reset your gut, and add foods back one by one.
Here’s the guide I followed, created by Mickey Trescott:
After a month of following the diet, and a few months adding foods back in, here’s what I learned:
- Life is just not the same without coffee and wine. 😉 Seriously, I don’t care if my symptoms flare a bit, these “food groups” have been added back and are staying.
- The diet makes eating out nearly impossible. For me, this was difficult as I eat out a lot. Being forced to cook so much was a learning curve, but I’m now a much better cook!
- I now know how to cook all sorts of meats. Before this diet, my kitchen was essentially vegetarian because I didn’t like cooking meat. Now I cook it weekly.
- Nightshade vegetables DO cause achy joints for me the next day, particularly tomatoes and peppers.
- My gut feels better with WAY fewer grains in my diet. Though I’m currently not gluten free, I generally now stick to rice and corn if I’m eating grains.
- I have continued to eat more vegetables, meat, fermented foods and kombucha and feeling better for it. Most mornings, I still make myself a green smoothie to start the day.
I’m not about to tell you this diet will cure you. I’m feeling better, but I think that’s largely due to a change in medication (switching from Enbrel to Cimzia). Adding the “light” version of this diet I’ve landed on to my lifestyle keeps me healthy and makes me feel good. I recommend testing it for yourself and would love to hear if you have experience with this diet in the comments!
“I just don’t know how much pain I’m expected to endure,” I confided to my friend.
And so, I had to admit to myself that I’ve been living with more pain, more morning stiffness, more burning sensations in my joints waking me up at night than I was willing to tolerate.
Because the pain is scary. It makes me think of my X-rays when I first got diagnosed, showing the pain that I had ignored had turned into bone erosions – permanent damage.
And because the pain is exhausting. Emotionally and physically exhausting. Invading my thoughts throughout the day. Throbbing right wrist, stiff left pinky, swollen left ankle, burning right elbow — Oh, was I supposed to be paying attention in this meeting? Invading my sleep at night. Invading my optimism that I had this disease under control.
And then I had to admit it to my rheumatologist. And then I heard him asking if I wanted to get on Prednisone. No. Methotrexate? I’d rather not….. I like a drink. I like to know if I get pregnant I won’t have to abort the child. I like not feeling nauseous one day a week and shedding copious amounts of hair. What else is there?
So now, Plaquenil. A malaria medication, which is a DMARD used to treat lupus and rheumatoid disease (though the printed information the pharmacist gave me states “they don’t know why it works to treat these diseases” — encouraging, right?).
Following the appointment came a struggle. Reading the side effects, wondering if more drugs were the right course, determining to also try lifestyle and diet changes.
Wondering if this was somehow because of something I could have prevented. Something I did. Eating the wrong thing? Stressing about my breakup and work too much? What if I could meditate and eat more kale? And cut out nightshade vegetables and gluten and dairy and sugar and caffeine and never drink again and basically become a monk? Would this disease leave me alone then?
And then depression. And acceptance. And sadness.
Because I’m back here again. Wondering if this treatment will work. Remembering that this disease is labeled chronic and I’m probably stuck with it for the rest of my life. Trying to remember how to feel optimistic and hopeful.
And two pills a day. And one shot a week. And less gluten, dairy, sugar, nightshade veggies, caffeine and alcohol. And more acupuncture.
And maybe starting to feel better. Maybe remembering how to have hope.
Love to all of you dealing with the taxing ups and downs of autoimmune diseases. I would not wish this on anyone, but it does force you to slow down, to be aware of your body, to appreciate the moments that are pain free and the moments where you surprise yourself with what you can do and what you can bear.
If anyone has experience with Plaquenil – good or bad, I’d love to hear it!
I live in a city that embraces naturopaths, acupuncture and supplements. Anytime I tell anyone I have Rheumatoid Arthritis, they immediately follow with diet or supplement advice.
Fish oil cures that, right? MSM eliminates symptoms. Add turmeric!
This advice is not only coming from the uneducated. I’ve read books and studies recommending some supplements, including fish oil, from reputable sources.
When I was first diagnosed, I heeded this advice. It got to a point where I was taking a handful of pills morning and night.
Finally, my body had enough, which it communicated with a gag reflex I started getting just by seeing the vitamins in my hand. I’m currently listening to my body and taking just one supplement each day – alternating calcium/vitamin D with a hair, skin and nails formula (does wonders for my methotrexate-induced hair loss and weak nails!).
Last night, I finally got around to watching Frontline’s Supplements and Safety documentary.
It’s an important watch for anyone who adds supplements to their daily regimen.
I won’t pretend to be a doctor and offer medical advice. Some people get great results from supplements. Just please add them to your diet with caution and awareness that the industry is not regulated!
Rude Awakening posted some great answers to the “30 Things You May Not Know About My Invisible Illness” questionaire in honor of Invisible Illness week: Invisible Illness Week: 30 Things You May Not Know….
She also reminded me, it’s that time of the year again! My answers are below.
30 Things You May Not Know About My Invisible Illness
1. The illness I live with is: Rheumatoid Arthritis (plus Raynaud’s Phenomenon and Chilblains)
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: I noticed what I now believe were RA symptoms as far back as 2009. I’ve had Raynaud’s since at least age 14, though possibly much longer. Chilblains began in 2012.
4. The biggest adjustment I’ve had to make is: Slowing down more often to give my body a break.
5. Most people assume: I’m fine now that I’ve been to the doctor, because I’ve gained weight back and look healthy. They don’t realize that I’m treating symptoms that are chronic and occasionally flare even with treatment – I haven’t “cured” my disease.
6. The hardest part about mornings is: This absolutely depends on the day! Some days mornings are the best, some I have so much fatigue and stiffness I don’t want to move.
7. My favorite medical TV show is: Scrubs!
8. A gadget I couldn’t live without is: Comfy flats and boots, a jar opener, and warm socks and gloves!
9. The hardest part about nights is: Some days it’s fatigue, some it’s pain, some it’s just knowing I have to get up the next morning, some are totally fine.
10. Each day I take 4-15 pills & vitamins.
11. Regarding alternative treatments I: I love acupuncture and find it helpful and relaxing. Would if I could get more massages! I watch my diet and have cut down on many inflammatory foods, including dairy and gluten. I incorporate anti-inflammatory food/supplements into my diet as much as possible: ginger, turmeric, cinnamon, omega 3s. Perhaps most importantly, I try to do something active most days. On rough days, it may just be a very short walk, on good days, it’s runs, swims, boot camps, dance or yoga.
12. If I had to choose between an invisible illness or visible I would choose: Invisible, even though it can be frustrating. Some days I look and feel normal and am able to forget about RA. Those are the best. Plus, being a private person, I prefer being able to choose whether or not I want to share my illness with others. Its invisibility affords me that choice.
13. Regarding working and career: I’m an entrepreneur working on a tech start-up that I co-founded. This means I likely work harder under more stressful conditions than my health and doctor would like. It also means I’m able to work flexible hours that allow me to make my doctor’s appointments and work from home on bad days (even from bed sometimes!). I try to remember to take time to myself to rest and replenish and focus on being healthy.
14. People would be surprised to know: I agree with Rude Awakenings: “Fatigue is as debilitating as pain – some days more so. And I feel like a definition is needed here. Fatigue = flu-like symptoms, not simply being sleepy.” On days with bad fatigue I struggle to do anything, including just talking to the people I love.
15. The hardest thing to accept about my new reality has been: Relying on drugs to feel well and accepting my body’s limitations on rough days.
16. Something I never thought I could do with my illness that I did was: I agree with Rude Awakenings here too: “Talk about it so openly.” When I was first diagnosed, I didn’t think I’d be educating people on my illness or reaching out to strangers!
17. The commercials about my illness: All feature older adults, seemingly in their 60s. They perpetuate the myth that Rheumatoid Arthritis is the same as Osteoarthristis and mainly effects older populations.
18. Something I really miss doing since I was diagnosed is: Not having to wonder how an activity, meal, or drink will effect my RA or interact with my meds. Not having to plan my life and trips around bi-weekly medication, bi-monthly blood tests, and tri-monthly doctor appointments.
19. It was really hard to have to give up: Control over my body. Oh, and dairy, gluten, alcohol and heels (I still enjoy all four in moderation).
20. A new hobby I have taken up since my diagnosis is: Blogging!
21. If I could have one day of feeling normal again I would: Similar to last year – I would just go, go, go all day and night, not worrying about lack of sleep, stress on my body, any of that.
22. My illness has taught me: Celebrate the good days and all that my body does for me. Always be patient and kind to others – invisible illnesses are a good reminder that you really don’t know what others are struggling with!
23. Want to know a secret? One thing people say that gets under my skin is: Agree with Rude Awakening again, absolutely this: “When people equate their grandmother’s osteoarthritis (or their own!) in her wrist to my autoimmune disease.”
24. But I love it when people: Ask me how I’m doing even if I look fine and want to learn more. I also love when people share their own experiences with autoimmune diseases or offer to put me in touch with friends who also have RA.
25. My favorite motto, scripture, quote that gets me through tough times is: I have many. Here’s a kinda nerdy one: “We take what we can get, Champ, and we do our best with it.” – Cordelia Chase. Another one along the same vein: “Do what you can, where you are, with what you have.” – Teddy Roosevelt
26. When someone is diagnosed I’d like to tell them: It gets better. The pain will decrease when you find the right meds. The loneliness will start to dissipate when others with RA come out of the woodwork and you find online communities to connect with.
27. Something that has surprised me about living with an illness is: Most people, even those close to you, do not want to think or hear about your illness. Everyone prefers to think that all’s well.
28. The nicest thing someone did for me when I wasn’t feeling well was: My boyfriend does this well: we’ll order in and watch a movie, and he won’t let me entertain thoughts of guilt over all that I didn’t accomplish that day.
29. I’m involved with Invisible Illness Week because: I want to create more awareness and understanding of autoimmune diseases. There’s so much that is unknown, underfunded and misunderstood.
30. The fact that you read this list makes me feel: Grateful. Thank you for taking the time, and for your support of Invisible Illness Week!
If you’ve followed my blog at all, you know I’ve tried lots of different diets to help improve my RA symptoms and circulation issues. One that I just haven’t been able to stick to is cutting out caffeine.
I’m sorry, I just don’t know how to function without the stuff and green tea in the morning…it just isn’t the same as a nicely brewed cuppa coffee (or an almond milk latte – mmm mmm good).
I made an awesome discovery recently that is alleviating my guilt of coffee drinking: Add a bit of cayenne pepper and a healthy dose of cinnamon to your coffee grinds in the morning and, walla!, fancy morning coffee with the added benefit of two inflammatory/pain-reducing, circulation-boosting superfoods. I haven’t tried it with ginger yet (another inflammatory/pain-reducing, circulation-boosting powerhouse), but that may be worth a shot too.
Try it and let me know what you think!
Yes, that’s right. Quinoa. The miracle superfood. The gluten free wonder. The spotlight food of the moment. IT MAKES ME SICK.
I used to eat quinoa all the time. And this is before I was gluten free. I just thought it was a tastier option to rice. And healthy.
Then, one fateful dinner about four years ago, my boyfriend and I made quinoa. About twenty minutes later we were both writhing around the floor of our living room in complete gut-wrenching agony.
I’ve experimented with quinoa since then, both on accident and on purpose, all with the same result.
The latest experiment happened last night. I made a really nice dinner for my boyfriend and me.
Last night’s menu:
My take on the “African Delight” salad from Happy Herbivore Abroad: line a large pot with water and coconut oil, heat and add sweet or red onions with a bit of berbere spice (a mix of cayenne, paprika, fenugreek, cardamom, coriander, cumin, nutmeg, ginger, cinnamon, allspice, turmeric, and cloves), cook onions until translucent, add yams or sweet potatoes and cook until soft, add fresh ginger and kale and set to simmer.
Zucchini and summer squash fresh from the garden, cooked in olive oil with sweet onion, parsley and basil. Served over gluten free pasta with parmasean.
Paired with yummy white wine from Sicily.
Anyway, I digress. Dinner was good up until the sudden urge to puke my guts out. My boyfriend wasn’t feeling the effects yet, so we went through every spice, wondering what I was sensitive to. Finally we looked at the pasta box. There in the ingredient list was the culprit: quinoa.
My bf started feeling the effects about twenty minutes later and we both spent the next four hours in agony, trying to distract ourselves with Archer, The Daily Show, and The Colbert Report.
I’m feeling better today, but am going to be much, much more diligent about checking the ingredient list!
More on quinoa sensitivity: http://sopranointherealworld.blogspot.com/2011/12/quinoa-psa-and-seven-foods-you-should.html
Has anyone else developed a quinoa sensitivity?
This is my new favorite morning smoothie:
1) A bunch of fresh parsley
2) A handful of kale
3) 1 banana (fresh or frozen)
4) A few inches of cucumber
5) Avocado (half or full)
6) A bit of fresh ginger
7) A teaspoon (or so) of chia seeds
8) For the inflammation challenged…A tablespoon (or so) of liquid fish oil
9) Unsweetened almond milk
10) Agave sweetener as desired
I’ve been a bit concerned about the relationship between Interstitial Lung Disease and Methotrexate over the last couple weeks (yet trying not to worry, because worrying leads to flares which leads to more of a chance of RA complications…ha! FML!).
I will still talk to my primary rheumatologist about this on Tuesday, but in the meantime, I’ve decided to seek a second opinion. This wasn’t as easy a choice as it may sound. It felt like I was choosing to cheat on my rheumatologist and giving up on my treatment plan. As I told my friend, my relationship with my rheumatologist is something I want to be sensitive too – he might be in my life for many years to come!
I started by going to my allergist, who also happens to be a respected immunology expert. Up until 2008, I was seeing him once a year for checkups on my recovery from Interstitial Lung Disease. In many ways, he knows my medical history better than I do.
He told me that there is indeed a link between Methotrexate and ILD, and recommended I get a second opinion at a research hospital that specializes in lung disease. They also happen to have rheumatologists who specialize in both ILD and autoimmune diseases. Cool.
Turns out these docs are also in more demand than my current rheumy. I need a referral to even have a chance of seeing one. This left me with the choice of getting that referral from my rheumatologist or from my primary doctor (who I haven’t seen in years because I have another OB/GYN). I chose my primary doc so as not to shake the boat on my relationship with my rheumy. This choice, of course, requires yet another doctor’s appointment (yippee! – where is that sarcasm font when you need it?).
A couple other things of interest came up at my appointment as well.
My doctor said that, given my medical history, he doesn’t think it is likely that I have gluten or dairy allergies or sensitivities. He recommended just eating healthfully and focusing on eating for my marathon training.
I don’t think this means that I will run out and eat gluten again (I’ve already eased up a bit on the dairy), but maybe I’ll think about being more flexible. I also still believe that eating to lower inflammation in my body is a very positive thing I can do to help control my symptoms. My doc is very science-based (as he should be), so until a trustworthy study comes out showing how diet can ease/cure/whatever RA, I think he will be giving this advice.
I ate lunch with my family yesterday and mentioned this, as well as the idea that perhaps GMOs, pesticides and all the other industrial crap that’s made its way into our food supply was more responsible for the rise in gluten intolerance and autoimmune diseases than gluten itself. My brother-in-law and sister’s reaction made me feel like a social pariah. I plan on doing more research on this and posting it here, but I’m certainly not the first person to state this theory, so I don’t believe it’s totally off target… Does anyone have thoughts on this? Or good articles I can forward to my sister??
My doctor provided me with a list of websites that he likes to use for research because they are entirely science-based:
- FARE: Food Allergy Research and Education (www.foodallergy.org)
- American Academy of Allergy, Asthma and Immunology (www.aaaai.org)
- National Jewish Health (www.njhealth.org)
- National Library of Medicine (www.ncbi.nlm.gov/pubmed)
- FDA Medications Research (www.dailymed.nlm.nih.gov)
- Consortium for Food Allergy Research (www.cofargroup.org)
- The National Center for Complimentary and Alternative Medicine (http://nccam.nih.gov)
- The Food Allergy Initiative (http://foodallergyinitiative.org)
- Google Scholar (www.scholar.google.com)
- WebMD (www.webMD.com)
I hope this list helps everyone as you do your own research and become your own advocate for your health.
I happened upon Kris Carr’s blog through a recipe. I loved her recipes and her attitude, so I decided to check out her book, Crazy Sexy Cancer Survivor (apparently there’s a documentary too, which I haven’t watched yet).
I felt a little dramatic reading it because everything she was saying really hit home for me. I have Rheumatoid Arthritis, not cancer. I’m not going to die of RA. My life’s not at stake. But many days, it feels exactly that way. I have the least sexy form of cancer possible. The kind that doesn’t get a book or sympathy. It’s an invisible disease with a name that diminishes its magnitude on sufferers’ lives. A disease that eats you from the inside out and can take everything away from you if you let it. Your joints, your freedom, your hope. So, in that way, I identified with Kris. As I was reading her book, I replaced the word “cancer” with disease, and it became a book about the power of survival.
One of the most important things I got from the book, which I totally wasn’t ready for, was the concept of healing versus curing. She writes that many of the healthiest people she knows are living with disease. This really hit home because I think I’m the healthiest I’ve ever been in my life, minus the RA. I watch what I eat, I workout, I don’t drink, I try not to sweat the small stuff, and I take care of myself. She talks about how people always say they want to be “cured” and get their lives back, but with healing, you can’t go back to that life. You will change your life after a diagnosis. Hopefully many of those changes will be for the better.
She writes about how important it can be to re-align your expectations of a cure and to be OK with healing over clinical remission. All you have to do is look at my “About Me” page to know that this is NOT my current approach. I want to kick this thing in the butt! I want it to be out of my life completely! But it made me think, could I be OK with healing to the point of this disease being manageable with minimal drugs? It’s sure not as much fun as not having it at all, but it is worth a thought. Sometimes the goals of “cure” and “remission” can just be added stressors because they may not be in the cards and they certainly may not be in your control. What is in your control is an attitude of healing. Constantly improving, learning, living, hoping. Not giving up. And maybe that’s enough.
I recommend you give it a read or browse through her blog. There are powerful nuggets there on changing your attitude, diet and lifestyle to promote healing. Here are my favorite quotes:
“During the time of darkest night, act as if the morning has already come.”
Kris Carr quotables:
- On making intimidating life/diet changes & just living:
“You don’t have to be good at what you choose. In fact, go ahead and embrace rotten. You already have cancer (RA, a disease), why would bongos intimidate you?”
- “Success is six degrees of separation.”
(i.e. take small steps on big goals)
- “The secret to happiness is the decision to be happy.”