Category Archives: Rheumatoid Arthritis

There Has To Be a Better Way

I remember sitting on my couch Googling “rheumatoid arthritis” the day my blood work confirmed my diagnosis.  The first statistic that came racing to my eye was from a Johns Hopkins study, “sixty percent of people with rheumatoid arthritis will be unable to work 10 years after disease onset.” Come again? Not be able to work? I am glued to a chair in front of a computer screen or in meetings most of the day. In 10 years, I won’t be able to do that? The tears started to flow. I was just 32 years old with a 6-week old baby girl.

Prior to this, I would have been considered an extremely healthy gal – a dietitian by trade, a competitive athlete, an avid booty shaker. Now I was faced with a chronic, autoimmune disease without reliable indicators to predict how quickly it would progress. I was scared and devastated, with the countdown to debilitation ticking loudly in my head. I woke every morning with my body on fire, feeling like I had a never-ending flu, and I was so tired I couldn’t get out of bed. My knuckles were so swollen that I couldn’t get my wedding ring on and my wrists and hands were in so much pain that I couldn’t hold my daughter to breastfeed (forcing me to form a borderline inappropriate relationship with my breast pump).

I indulged in a pretty elaborate pity party while the words of my demoralizing Rheumatologist (“you should feel lucky you’re not in a wheelchair”) rang loudly in my head. But my baby girl and my off-the-charts Type-A personality quickly motivated me to find the answers I needed to beat this thing. Answers other than long-term steroids and immunosuppressant medications, I mean. Their laundry lists of side effects include glaucoma, osteoporosis, weight gain, mood swings and increased infection risk. Reading them almost made the rheumatoid arthritis (RA) sound pretty good. In what universe does RA + steroids = vibrant health? Was I really supposed to fill up on medication and feel like a puffer fish, or else be in debilitating pain? These were my only options??

After an underwhelming experience with Western medicine, I explored Eastern medicine options and in doing so, learned about the havoc food sensitivities can wreak on your system, as well as the principles of an anti-inflammatory diet. What should be concerning (for us all!) is that I’m a former registered dietitian with the American Dietetic Association, I have a bachelor’s degree in Nutrition and a master’s degree (also in Nutrition)…and this came as headline news to me.

Anti-inflammatory diet? Never heard of it.

Eliminate gluten if you don’t have Celiac Disease? Can’t be.

The function of your immune system is largely based on the effectiveness of your digestive system. Huh?

Eliminate toxins that can come from non-organic foods and artificial sweeteners, preservatives and additives? That’s a load of alternative health crap.

Isn’t it all about calories in/calories out? Counting your fat grams and carbs? We’re told to eat low-fat dairy and whole grains and we’ll all ride off into the optimal health, tight booty sunset. Right? Wrong. The apple cart was turned over and my REAL education was about to begin.

The first obstacle after fully educating myself was what the hell am I supposed to eat? I used my education (and desperation) to wade through all the questions, and nutritional guidelines, and how many different words companies are allowed to use in an ingredients list so that they don’t have to say “milk” (there are a lot). I’ve stood in that aisle at the grocery store thinking I’m making an easy, smart decision about a food item, only to read beyond the “Gluten-Free!” label to find it’s jam-packed with soy, sugar or corn – all three of which are also not good for my RA. Eventually, I found the short list of foods that did make me feel better, and I ate them in every possible combination to avoid boredom, while I researched what else I could add in. I even went so far as to start my own food company – Clean Cravings – and in the process developed a unique perspective on the allergy-free, gluten-free, natural food industry. I kept my mind and my eyes open, and I realized that the new foods I was putting into my body weren’t just good for kicking some rheumatoid arthritis ass, they were good for my ass (and my whole being).

Over 50 million Americans suffer from an autoimmune disease – with numbers on the rise – and over 30 million Americans suffer from some type of food sensitivity. However, our current health system is doing society a huge disservice. Eliminating inflammatory foods plays a huge role in managing autoimmune and other chronic conditions, and that fact is being largely ignored. Guidelines on treatment for RA from the CDC website, states “…there is no cure for RA, but new effective drugs are increasingly available to treat the disease and prevent deformed joints. In addition to medications and surgery, good self-management, including exercise, are known to reduce pain and disability.”

This is as good as it gets? Dulling the pain, going under the knife, and going for a walk (if I can even move by then) is my best approach? How are we missing the elephant in the room here? Not a single mention of nutrition. That’s why I’m here. That’s why this message is needed. People don’t know! They either aren’t being told about the power behind these progressive dietary changes, or they aren’t getting the fine print. There is so much to learn about the ramifications of food sensitivities and how the quality of our food can help. However, it is confusing and overwhelming.

My purpose is to teach ways to eat clean, feel great, and not hate it along the way. This site and my services are about demystifying clean eating. They are about helping people find a way to a night out with friends that doesn’t leave them feeling like a stuffed sausage. About helping people discover ways to recognize symptoms (whether obvious or obtuse), then alleviate them and crush cravings. Ultimately, it is about learning how to let go of the calorie counter and the fat gram obsession, and how to hold on tight to a fist full of delicious, whole, organic food.

 


 

  1. Ruffing, Victoria, and Clifton Bingham, III. “Rheumatoid Arthritis Signs and Symptoms.” Arthritis Information. Johns Hopkins Medicine, n.d. Web. 10 Oct. 2013.
  2. “Autoimmune Statistics.” AARDA. American Autoimmune Related Disease Association, n.d. Web. 11 Nov. 2013.
  3. “Rheumatoid Arthritis.” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, 19 Nov. 2012. Web. 12 Nov. 2013.

The Back Story: A Lesson in Complementary Care

Back Story ImageFor many of you, this may seem slightly out of scope. But if you know me well, then you’re familiar with my fascination with the intersect (horrific collision?) between alternative and Western medicine, and this post won’t come as a surprise. Also, I thought this insight would be appropriate for context – my backstory is literally My Back Story, and it’s the reason Clean Cravings, as an informational source of progressive nutrition, was delayed in its launch last year.

Some Background

I was always very curious about complementary and alternative medicine (aka integrative, functional, holistic medicine), and I studied it a bit in grad school. But it was really after my rheumatoid arthritis diagnosis in early 2008 that I dramatically changed my stance on health, healing, and our healthcare system. My diagnosis morphed me into a living, breathing product of a system that puts the onus on the patient to become educated, consult with multiple specialists, ask the tough questions, decipher the differing opinions and ultimately advocate for themselves for the course of treatment that they believe is best for them.

If you know Clean Cravings, then you know that I manage my RA with my “clean”, or “anti-inflammatory” diet, along with tune-ups – supplements,  acupuncture, and energy medicine – when needed. I am thankful every day that I am not laid-up in bed with aching phalanges, or looking like a puffer fish from chronic steroid use, or still living with the other chronic conditions (depression, migraines) that resolved after taking a more holistic approach to my condition. And, like most people who have sought out clean eating, my natural practices have expanded into most every other aspect of my life. I am not bathed in patchouli oil or healing crystals (not that I judge), but I do use natural personal care products and cleaning products (no phthalates, parabens, petrochemicals – organic, whenever possible). I use nutrition, supplements, acupuncture and/or mind-body work for any minor physical ailments I have. I still have great respect for the advances from Western medicine, and you better believe I’ll have my ass in the ER if any serious medical event occurs. However, I believe strongly in the body’s ability to heal itself. And more than anything, I believe in finding and resolving the root cause of the issue, rather than slapping a synthetic Band-Aid over it.

The Road to Crazy Town

The last year, however, has been a wild ride, and I haven’t always been in the driver’s seat. I’ve been battling a back issue that went from an annoyance with no obvious, acute cause, to debilitating pain that limited nearly every aspect of my life. I went from being confident I could nip it in the bud with a little time, physical therapy, and maybe some acupuncture to a Mom who couldn’t play with her kids. I couldn’t change a diaper. I couldn’t work without being completely distracted by pain. Even trying to walk or stand for more than 5 minutes was almost impossible. Exercise became a thing of the past.

Yep. This “clean living” girl who never takes prescription or over-the-counter medications and feels guilty over the occasional mani/pedi at the non-green nail salon (gasp!) was popping Vicodin every day in an effort to keep from driving my car into a brick wall.

This chronic pain thing is no joke. It’s an all-consuming, non-stop alarm going off in your body – and there’s no escaping it. Enduring this day in and day out, is sure to send anyone into crazy town after an extended amount of time. My personal journey to crazy took about 6 months. And at that point, without results from other non-invasive procedures, alternative treatments, or medications, I found myself in consults with orthopedic surgeons talking about cutting my back open.

“How in the HELLLLL did I get here?” This was the overwhelming thought that screamed loudly in my head. Surgery is not getting at the root cause. How will this ensure I won’t have this issue again? Listening to myself having conversations about micro discectomies, laminectomies, and the pros and cons of endoscopic vs open, microscopic surgical approaches was like an out-of-body experience. Granted, with my history – a major car accident and multiple sports injuries resulting in months of downtime and intense physical therapy – maybe I shouldn’t have been in such denial.

But. I am the girl who proudly manages her rheumatoid arthritis with diet. I’m not even 40 yet. I own a freaking Vitamix. And I use it.  A lot. How am I talking about having back surgery? I have long been drinking the preventative, alternative care, stevia-sweetened Kool-Aid despite a predominantly Western medicine professional background. However, this issue seemed to break me down and have me abandon ship on all my beliefs.

Why?

Well, because I was miserable. Because I couldn’t function as a Mom like I needed to. Because I gave a few things a shot – physical therapy, osteopathy (wasn’t able to provide long-term relief for my back issues, but fascinating and very effective in other ways), mind-body work – and they didn’t work as fast as I needed them to. Reluctantly, I tried epidural injections at two different levels in my spine (hoping it would buy time for the osteopathy to work). However, this provided only four days of pain relief (following three days of increased pain). And, I went a bit manic for a week from the steroids. One day I was frantically organizing closets despite having a back issue bad enough to NEED AN EPIDURAL, and the next day my husband gingerly offered me a palm tree branch from the front yard on which to gnaw, because I was acting like an angry, cornered animal.

Underneath the frenetic, pissed-off energy, I knew what I really needed. REST. But I also knew that the type of rest required was far beyond what is socially acceptable or financially feasible in this society, especially as a working Mom.  Or any Mom. Or Dad, for that matter.

At one point, I was put on disability for three weeks. That provided a little relief, but it wasn’t significant. Shockingly, when you go on short-term disability from your job, they don’t send in a 24-hour nanny to wrangle your two extremely active kids. So for those three weeks, my “healing helpers” were a 25-pound, 15 month old capable of scaling a double oven in less than 3 seconds, and a 6 year old who had regaled her fellow Kinders (and their parents) with stories about the dojo she frequents. The girl has never even had a karate lesson. Suffice it to say complete rest wasn’t on the agenda.

And if I’m really being honest, it’s time to admit that part of the reason surgery was on my lips was because I got drawn into the drama and the validation Western medicine provided me.

Back pain is a peculiar issue. There is no cast for people to ogle at and no bandages that proclaim, “I am injured. I need help. With everything. All of the time.” So your choices are either to suffer silently, or get all victim-y and complain about it incessantly. I have practiced both approaches. Both suck. When there are people close to you who don’t acknowledge your pain, it’s frustrating and deeply hurtful. But, the Western medicine route provides validation. Western medicine says “I understand, and I can help with my strong drugs and invasive procedures.” Western medicine can stick needles in your spine to inject heavy-duty medications and if that fails, they upgrade to a scalpel. All of this brings with it a validation to your suffering. If something that invasive needs to be done to your body, you must really be hurt.

Western medicine is also really good at giving you a lot of important-sounding labels – ruptured discs, severe stenosis, bone spurs, degeneration, radicular pain, nerve damage – and sometimes putting a name on your pain can provide a certain level of comfort. When your internal dialogue is mostly “What the hell is wrong with me?” and “Why isn’t this getting better?”, it feels good to have someone give you the “answer.” And while these labels play a necessary role in our current system, they can also be a double-edged sword, where an answer can also feel like a defense. As in, “See? I told you my back is hurt – I have RADICULAR PAIN.” I was aware of the lure of becoming attached to, and defining your identity around such labels or diagnoses (thank you, Eckhart Tolle), and that sometimes, you are really not ready to let it go because even though it may be subconscious,  those labels are serving you in some way  – excuses, attention, or finally a validated reason to rest. But, I still got sucked in.

Was I Getting in My Own Way?

Convinced there still must be something that could be done to aid my body to heal on its own, I consulted a respected medical intuitive that I consult regularly (if you’re rolling your eyes at this, put down your mason jar of Hater-ade and check your uninformed ego at the door, please). I realized the primary issues and limiting beliefs inhibiting my healing were:

1)  BURDEN (working Mom of a 1 and 6 year old, wife, crazy travel schedule, moved across the country twice in two years (in a job I despised for 1 of those years…). Did I mention my symptoms just came out of nowhere one morning? Coincidentally, my husband had been traveling all week and the pain began just before he started a new job with a commute that left me taking care of the kids on my own about 3 additional hours a day. And thanks for asking but no, I didn’t get to reduce my work responsibilities in response.

I know, cry me a river, right? I realize we are all burdened in some way, and many far more than I. But my resistance (fear?) to ask for the help I needed was the real issue. THAT was my root cause. I was offered more disability by my doctor, but didn’t take it. I should have. And I should’ve asked for more help with my kids, and life in general. I should have been a better advocate for myself at work – reducing my travel schedule, refusing certain activities. I shouldn’t have waited for permission to rest, I should have rested because I knew it was what I needed.

2) NOT FOLLOWING MY PASSION. At the risk of stating the obvious, my passion is nutrition. And while I work in that space to some degree now, what I really want to do is share insights on the power of progressive health and nutrition practices (and have more time with my littles)  – whether that means finishing my book, releasing regular blog posts, or working directly with clients.  However, I am in a place in life right now that makes that kind of transition difficult. Or so I believed. My medical intuitive didn’t sugar the donuts when she asked me, “Why do you believe you have to be crippled to write?”

And I have never publicly addressed this, but I put my Clean Cravings food business on hold indefinitely and re-joined the corporate world a few years ago to provide a more stable life for my family (and better mental health for myself). While I was happy to take one for the team and I am proud of supporting my family, my heart still breaks into little pieces of shame, regret and missed opportunities every day.

These insights were very powerful for me and I did do some work with them. Did I commit fully? Probably not. I never fully let go of my attachment to my “important” labels. If I did, would my back have healed on it’s own? Hard to say. Regardless, the realization is immensely helpful to me now as I move forward in my progress and prevention of future issues.

Finding (and Accepting) the Balance

Ultimately, I decided that I needed a jump start. And if that jump start had to include a trip to the OR, and the “surgery shame” that I knew I would (and did) receive from my peeps in the progressive health circles (and also other allopathic MD’s in various specialties), so be it. Everyone had an opinion – back surgery only results in more back surgery, you just need more rest, long-term nerve medications are the better route (really!?), once you cut you can never go back.

I consulted with three of the top spine surgeons in Los Angeles and found one surgeon (and practice) that I trusted inherently, who answered my tough questions, had a comprehensive plan for my healing (long after I got off the table), and that ultimately, my gut decided was the place for me. I needed to get back to my life and be there for my family. It was time to accept the undeniable structural issues causing my pain and get over the fact that nothing else was working. Not to mention, I’m pretty sure it goes against every principle of alternative or holistic medicine to carry around shame and guilt about decisions you feel will improve your health.

However, I made a vow that I would not get sucked into a path made up of only Band-Aids. I would continue to weave in my alternative practices prior to, immediately following, and every day moving forward from surgery.

Here I Am

I moved past my questions and into a place of clarity – in no small part thanks to a dear, enlightened friend who offered me affirmations for healing. And, in June, I had the surgery.

My recovery has been long, and is still in process…but it’s been amazing. Last year, when I was in the thick of the pain, frustration – and now that I have perspective, the depression – things were even worse than I realized. I am now ready to re-enter life in all areas. Frankly, I’m kind of on fire.

I have been doing physical therapy for three months. I napped and meditated almost every day of my medical leave and worked on my book, and I am trying to continue that now even while back at work (not the napping of course, I am a Mom and I do live on planet Earth). I have done some energy work with my holistic MD for remaining sciatica, and I have continued my affirmations for good outcomes. I take my alpha lipoic acid, omega-3’s and use a lot of ice to avoid NSAIDs  (non-steroidal anti-inflammatories – aka Ibuprofen, Aleve) that could exacerbate my intestinal permeability and food sensitivities (that’s an interesting conversation to have with your spine surgeon – in my case, he was surprisingly receptive).

And while I am still not supposed to lift my now 30-pound, 2 year old (the most difficult aspect of it all), and the only approved exercises are walking, prescribed core work, and stretches, I’M NOT IN PAIN. And I’m not on drugs. Prior to surgery, I couldn’t walk (or stand) for more than 5 minutes. Now I can walk – uphill even – for an hour. Most importantly, I can play with my kids (with some back-up – did I mention my kids are WWF prodigies?). And I’m confident that one day I will progress to my ultimate goal of flailing my body around on the beach volleyball court again.

There have been set-backs. Like going back to work. Prior to my first day back, I had gone three weeks with zero nerve symptoms (that was at just 8 weeks post-op). Within the first few hours at work, my back was sore and the sciatica flared a bit – and it continued to get worse in the following weeks. But now I know this is the red flag waving to tell me to reclaim my balance – to rest and to keep following my passion (even if only for minutes a day). And also to sit in proper spinal alignment on my ischial tuberosity and engage my core muscles, release my psoas and stretch and foam roll almost every inch of my person on a daily basis (my PT would kill me if I didn’t mention that).

Moving forward, I will go see my osteopath to prevent issues with adjacent discs, and I will continue to rest when I know I need to, not just when I think there is validation by others. And I will write and share my insights on progressive health and nutrition and how to make sense of it all when you have 10,000 balls up in the air at any given time, because that is what my soul wants to do. I may hang out here on this complementary care kick for one more post, to share insights on communicating with multiple practitioners who don’t share the same philosophies, but I promise to get back in my lane soon.

The Point

If there has been nothing else gained from me indulging in my personal back story, I hope that it has served to:

  • Validate the insanity that can come from an unaddressed need for help, validation, rest, and chronic pain
  • Bring awareness to those that may be so attached to a medical condition or limiting beliefs that they are ultimately preventing proper healing
  • Loosen the grip of anyone holding on too tight to either alternative/integrative/holistic or Western/allopathic methodologies and bring it back in balance with a focus on individualized care
  • Encourage you all to find your passion and do something to move towards it everyday
  • Give the go ahead for everyone to get some well-deserved rest (in case you still need someone to tell you it’s okay)

Coming Clean

When I founded Clean Cravings my intention was to help as many people as I could experience the miraculous benefits I have received by following a clean, anti-inflammatory diet.  And while I’m delighted that so many people have adopted and benefited from our products, a girl can only help so much offering pizza and pizza crusts.

I have felt compelled for some time to start this blog as a more comprehensive and intimate view into my experience following this way of eating and addressing the many other steps I have taken in my pursuit for optimal wellness.  I’m not gonna lie — it wasn’t easy to get started. Without the strong motivation I had from debilitating joint pain and extreme fatigue I’m not sure I would’ve have been able to stick to it. Honestly, if you would have told me 3 years ago that one day I would never eat wheat or dairy (the mainstays of my former diet), I would have assured you that you were smoking something. But this diet has been remarkable and worth every pass of my gluten/dairy/corn/sugar/preservative-laden former faves. It has managed my symptoms from rheumatoid arthritis (without medication) and celiac disease, virtually eliminated migraines I commonly suffered from, reduced my depression and provided me with the long desired answer to effortless weight management.

Having been on the front lines trying to figure out exactly what it means to “eat clean” and how to do it– I’m here to be your guide. Even with a masters degree in Nutrition, I had to hit the books to figure this out. So whether you already know of food intolerances you have, suspect you might have some, or are just thinking of cleaning up your diet — hang with me. I’m here to be your guide offering you my story, my insights and my secrets to clean ways to satisfy cravings for all things starchy and sweet.

I’ll address the questions I’m constantly asked:  how did you discover these food intolerances? how do you live this diet in everyday life? what products do you recommend? can you eat out? does your family follow the same diet? what supplements do you  take?  what types of health practitioners do you see? what does it even mean to “eat clean”? and the ever common — what the hell DO you eat? I’ll also weave in information on all good, valid resources I find and offer my thoughts on the flood of nutrition and other health information coming through from the mainstream media  that  isn’t so legit (e.g. the recent claims of the “dangerous” gluten-free diet).  Just as I was frustrated with the gap in the market for clean, convenient food I’m just as annoyed with some of the skewed information we’re fed (no pun intended).

So here we go. I’m coming clean — laying it all on the line. For you.

-Shelly