Archive for category Alternative Medicine
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!
Magical Thinking #1: I will find the perfect shoe
Let’s start with my favorite magical thinking first: somewhere out there, exists a perfect shoe for us RAers.
I know I’m lying to myself with this one, but the quest is never ending. I love shoes, so, even with the blisters and sore feet pads, it’s a pretty fun quest to be on.
I have two new shoes to test out in the upcoming months: Faux Fur-Lined Tom’s & Yoga Sling Sanuks. The box was waiting on my doorstep as I came home from work today and I seriously did a happy dance. Shoes! 🙂
So far they’re both very comfortable. I’m bringing both on an upcoming trip, so I’ll let you know how they hold up.
Magical Thinking #2: I can gargle my sore throat away
Way less fun is my sore throat that refuses to subside. It started last Friday and has progressively gotten worse, not better. Despite heaps of vitamin C, garlic, immune boosters, salt water gargling, and my ACV elixir. I was on the fence about whether to skip my Enbrel and methotrexate this week, because both are immune suppressants. My RA symptoms have definitely been more active recently, so I begrudgingly skipped the drugs. Sure enough, today they’re flaring a bit again. So much ugh, only new shoes could cheer me up (see above, yay!).
The surprisingly not awful, throat-soothing, but in no way a cure, ACV elixir recipe:
- A generous splash of organic apple cider vinegar
- A dash of cayenne pepper
- A dash of ground giner
- A heap of honey
- A squeeze of lemon
- Enough hot water to mix it up and make it palatable
Magical Thinking #3: I’m ready to start training for another marathon
It’s counter intuitive, I know. I’m sick, my RA symptoms are flaring, I just bought two new pairs of shoes and they have nothing to do with running…. But there’s something about being stuck on the couch that makes me brainstorm big goals. I’ve mapped out a 10k in May, a half marathon in July, and marathon in October.
We’ll see. The timing may change and the races may change, but I’m motivated to push myself to train for something, despite (or maybe because of) the pain!
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!
I think I can speak for many of us RAers when I say that living with a chronic disease means constantly being sold a Coachella festival worth of the healing powers of alternative medicine, therapies, yoga, salt candles, mantras, green juice, and so much more.
But they do all start sounding suspiciously the same. Do you have a chronic disease, depression, fatigue, allergies, the propensity for bad decisions, financial woes, and stress? Look no further than acai berries! They cure EVERYTHING and make you live forever!
So when my boyfriend sent me the brilliant tongue-in-cheek site, New Age Generator, I fell in love. Use it to create the copy for your own holistic site. Or to find gems of wisdom such as this:
As you believe, you will enter into infinite choice that transcends understanding. Faith healing may be the solution to what’s holding you back from a breathtaking explosion of peace. Through aromatherapy, our third eyes are opened by synchronicity.
Also of note, Wisdom of Chopra (as in Deepak Chopra). It generates all the Deepak wisdom you could ever hope for, like this:
Experiential truth is the foundation of new potentiality.
You’re welcome. 🙂
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!
Alright, officially Invisible Illness Week was Sept 9-15th, but better late than never, right?
1. The illness I live with is: Rheumatoid Arthritis
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: probably 2010
4. The biggest adjustment I’ve had to make is: listening to my body and taking it easy when I’m in pain or fatigued.
5. Most people assume: they know what Rheumatoid Arthritis is, but they’re usually thinking of Osteoarthritis.
6. The hardest part about mornings are: I move a little slower than I used to. AND remembering to take my vitamins.
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: Oxo Good Grips kitchen tools and my grip jar opener
9. The hardest part about nights are: when fatigue equals a busy mind and insomnia, not sleep.
10. Each day I take 6 -14 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: will try anything. Personally, yoga, acupuncture and changing my diet (no gluten, less dairy and sugar, more veggies) help a lot. If I could afford it, I would get massages more often.
12. If I had to choose between an invisible illness or visible I would choose: I’m a private person, so probably invisible.
13. Regarding working and career: I’ve kept my career, but I’ve embraced (and have been blessed with an office that embraces) a flexible schedule. This lets me start my mornings slower or work from home when I need to.
14. People would be surprised to know: how bad my symptoms were before I went to the doctor. I was really good at the “grin and bear it” denial technique.
15. The hardest thing to accept about my new reality has been: that this disease is chronic. When I was diagnosed I thought I would be the exception to the rule and go into remission within the year. This hasn’t been the case.
16. Something I never thought I could do with my illness that I did was: RUN a marathon.
17. The commercials about my illness: feature older people golfing and make me roll my eyes.
18. Something I really miss doing since I was diagnosed is: going out for a night drinking with my friends. This is a double no for me because the drugs I take (methotrexate) are hard on your liver and I try to be kinder to my body these days.
19. It was really hard to have to give up: alcohol (see above) and high heels. I still indulge in both on occasion.
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: go-go-go ALL day long – run, climb, dance, party. I’d wear high heels. I’d stay up all night. I wouldn’t even give a passing thought to “paying for it” the next day or even week.
22. My illness has taught me: I’m stronger than I think and everyone is going through something, so be patient and kind with yourself and others.
23. Want to know a secret? One thing people say that gets under my skin is: “But you’re too young to have arthritis!” If this were true, I wouldn’t have it and hearing this just makes me feel ashamed and misunderstood.
24. But I love it when people: ask me sincere questions and want to know more about RA.
25. My favorite motto, scripture, quote that gets me through tough times is: I have two I come back to: “Never, never, never give up.” – Winston Churchill; and “So it goes.” – Kurt Vonnegut
26. When someone is diagnosed I’d like to tell them: It’s tough, it’s scary, it sucks. It will get better. You will feel better than you do today.
27. Something that has surprised me about living with an illness is: the supportive community of people I’ve met (mainly through online support groups).
28. The nicest thing someone did for me when I wasn’t feeling well was: just let me cry and then ordered me Chinese food in bed and hung out all day, watching funny TV shows.
29. I’m involved with Invisible Illness Week because: I think awareness of invisible illnesses is important to funding research and finding cures.
30. The fact that you read this list makes me feel: honored and vulnerable
There’s been times on this blog where I’ve complained or wondered about the efficacy of acupuncture. I wanted to share the very positive experience with acupuncture I had this week.
When I first took a chance on acupuncture, I went to an eastern medicine school close to me. They were VERY affordable, at only $25 for acupuncture or herbal recommendations. The only problem was, it was never relaxing.
The students weren’t always sure of themselves and the teachers who answered their questions were teaching more than treating me like a human patient.
And then after they stuck me with needles, they would leave and I could overhear them chatting with fellow students in the hallway. It was not relaxing at all and, being new to acupuncture, I would have panic attacks when they left me in the room.
I gave this clinic about four chances and then pretty much swore off acupuncture. Then my friends started recommending an acquaintance of mine who had just started her own practice. They weren’t just recommending, they were raving.
So despite the hour drive and much higher cost, I decided to go see her. I bought a five session package to save money. So there I was, committing once again to something I’d tried and given up on. I’m so glad I did.
Off the bat, the experience was more caring and relaxing. She took time to go over every bit of my history, from medical to personal, in a very human (read: not just doctor to patient, mhmm, mhmm) kind of way. I found that leaving her sessions would at the very least put me in a better mood. I couldn’t say with certainty that it was helping my RA though.
And then, last week, something very miraculous happened. It had been about three weeks since my last session with her, and I’d been struggling with joint pain and all over aches and fatigue pretty consistently for about a month. I was bordering devastation because I had been feeling so good before and during my March trip to Spain.
Not to mention, I had consulted with a doctor in March who had given me the go-ahead to get off methotrexate since I was doing so well. My constant pain that seemed to getting worse and worse was making me really nervous about getting off MTX, so I haven’t done it yet.
So last week I go to her and tell her the positives – my digestion’s been great, my wrist is no longer shooting nerve pain up my hand – and the negatives – I’m stressed and freaked out, achy all over with pain points in my joints, and struggling with fatigue.
We chatted and she stuck me with needles and let me relax (yes, actually relax) for about thirty minutes. By the time she took the needles out and I left her office, I felt like a new woman. I wasn’t in pain.
Over the last couple of days, I’ve had mild pain in specific joints – my left wrist, my right foot. But that is more par for the course and hasn’t stopped me from signing on for training for a sprint triathlon or running a 15k benefit run for Boston yesterday. The mysterious, horrible, unrelenting all over achiness has lifted.
I don’t know if it was actually being able to relax, or venting my problems, or the needles, but I’m so happy I could kiss her. 🙂 I settled for sending her this card:
I have now decided to buy 10 more acupuncture sessions with her. I hope each one is as magnificent.
It’s gross, but, then again, so are autoimmune diseases…
BBC – Future – Health – Worm therapy: Why parasites may be good for you