Archive for category Diet
“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