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About three years ago when I was first diagnosed with RA, I met a variety of people who told me that going gluten-free might “cure” RA. I didn’t put a lot of credence in their theory. It just didn’t seem possible to me, and in fact it made me kind of mad. How on earth would that be possible? RA is autoimmune, not food-based, right? It’s not a disease that begins because of our habits. And add to that my genetic connection to a parent with RA. The whole suggestion just kind of pissed me off.

But I guess I never completely wrote off the possibility of going gluten-free. Every time someone brought it up, my  response was the same. “Maybe someday but I’m not ready right now.” Honestly that’s just a nice way of saying … give me a good enough reason and I’ll consider if it would be worth it to me. I love bread and all things wheat, so being gluten-free sounded like a small bit of hell right here on earth. But just in case, I eliminated processed breakfast cereals and limited my bread consumption … okay but not pizza or subs or cookies or cakes … at least not THAT much. I definitely found that the more healthy, clean, unprocessed choices I made, the better I felt. But gluten-free … nope, not yet.

Well, about 3 months ago things started to shift. I read a great book hoping to gain some insight for a newly diabetic family member. What? A book about diabetes talked about gluten? Yup – and autoimmunity … and the connection between the two. And I found an article that seemed credible covering the connection between the two topics. Both sources essentially said that eliminating gluten may lessen or remove the possibility of getting another autoimmune disease. And I read another book about the connection between thyroid issues, autoimmunity and gluten too. Hmmm … don’t want any more diseases … so maybe … Here’s where my “switch” or motivation was beginning to flip. More reading and more connections ensued. And I decided to give gluten-free living a try.

Know what really flipped the final switch? Well I just happened to stand on the scale one morning. The previous evening I’d had two small pieces of pizza and a few baked, breaded shrimps. Shocker – the scale showed I had gained four pounds overnight. Nothing else in my food the day before was inflammatory. But four pounds of water/inflammation packed on just from a “moderate” serving of wheat-based stuff. You should know that I’m not super worried about my weight – it’s healthy and I’m fitting in my clothes. That’s another reason why four pounds overnight seemed crazy.

So I figured maybe there is some truth to the connection between gluten and inflammation. Although I don’t suppose I’ll ever know for sure if gluten really would cause another autoimmune disease … or not. If I can hedge my bets, maybe it’s worth a try. And I thought to myself, “let’s give it 4 to 6 weeks and see how I feel. If there’s no change, I’ll just go back to gluten.”

I talked it all over with my husband, showed him the articles, and decided to go for it. And how long did it take to see and feel a difference? Not 4 to 6 weeks but 4 to 6 DAYS! Truthfully, I am still finding things that have changed … and it has been about 4 weeks now. Here’s what I noticed:

  • Flexibility (what I noticed first … and as a massage therapist this change is very helpful … plus it’s easier to get on the floor and play with the grandkids)
  • Major reduction in morning stiffness, especially in my hands (again, so helpful when I have early morning clients)
  • Strength or more muscle soreness (I think keeping my muscles strong will ultimately benefit my joints, so this is important to me too)
  • Major changes in how clothing waistlines fit (no weight change, just every single piece of clothing is looser & all muffin tops are gone)
  • Less swollen feet at night (I stand for up to 8 hours each day, so this comfort level change is huge)
  • Less wildly uncontrollable hunger (I used to say my stomach was really a headless monster but not anymore …)
  • Less irritability, especially around hunger (this is huge because I have been attributing irritability to hormone changes … maybe not so much)
  • Calmer emotions even in times of great stress (so I’m in the sandwich generation and a small business owner … need to be calmer every day)
  • Less brain fog – not “losing words” or my train of thought at all (super helpful and makes me feel a lot less crazy and perimenopausal)
  • Changes in muscle definition and general tissue quality (now you can see my muscles, plus they feel looser and less tense to both me and my massage therapist)

I can’t say for sure that going gluten-free will help you with these issues. (But I would wish good changes of any type for you!) I can’t say for sure that I will always experience being gluten-free as a positive force in my life. But I am hopeful … and that makes all the difference each morning when my feet hit the floor.

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This week marks three years since my RA diagnosis, and I’ve been tossing around some thoughts lately. 2012 has been a rough year in so many ways, and as time progresses and the stressors don’t change, I can see how much that stress affects me. I also have had a couple of people ask me lately to share what keeps me going … strategies that help me stay feeling well.

Challenges: My main challenges are pacing myself and managing stress. I am a busy, doing, going and never stopping kind of person. This can be a little too much for my body sometimes. And my main stress relievers are exercise and my work (more on that later) … not exactly still activities. So I have to force myself to slow down and relax a LOT.

Strategies: I switched last year to a more gentle form of exercise – water exercise. I love it and find it to be the perfect pace. Plus I can ramp up or down depending on how I feel – and no one in the pool is judging me because it’a all underwater! (same goes for swimsuit-related self-consciousness …)

Strategies: I have a much lower stress career now than I did 10 years ago. That’s massage therapy versus advertising. Although I believe in good customer service and meeting my clients’ needs, I also have a wonderful group of clients who encourage me to take care of myself first so I can take care of them more effectively. I don’t have a boss telling me I must perform. I judge my schedule based on how I feel at the time. Even though I book people ahead (sometimes several weeks out are full), I can skip filling in the spot when someone cancels and give myself a break when needed. Little things like that make a big difference for me. I also work in a beautiful space that I completely designed. I play peaceful music that I love. I talk with chatty clients, or I have long breaks of silence where I can focus on breathing and the meditative nature of giving a massage.

Challenge: After a 10-year massage therapy career, I think I’ll probably taper off over the next 5-7 years. I’m nearly 50 now and ready to shift into another career – health coaching! I am passionate about this field, and especially about helping people who have chronic pain and inflammation like me.

Strategies: Still working on how to do this … but I just know that if I plan that will help. I have a few expert friends that I’ll reach out to for ideas. This is a big part of my strategies – don’t try to “go it alone!” Asking for help always offers better solutions.

Challenge: Managing medications

Strategies: Get a smart-phone enabled medication reminder app. It’s my savior and reminds me to take my meds twice a day. Plus once a week. Plus every other week. Ayyyiiiyii … I have enough in my brain without stressing about compliance. And consistent medication is a big help to my overall wellness. The meds reminder also helps me remember any non-standard meds I have taken, like antibiotics for example.

Challenge: I’d love to say that I can eat anything I want and never be affected … in my waistline or otherwise. But that would be a big, fat LIE. I have had to revise my perception of “comfort food.” If I eat a bundle of junk food, sugar or even too many carbs … my body gets angry. If I gain weight, my clothes hurt (literally … tight waistlines are yucky!) and more significantly my knees ache. My hands will also swell with too much “discomfort food.”

Strategies: Well, as a health coach, I know a lot of great information. I even know how to take baby steps and put it into action. And starting about 20 years ago, I began this journey toward making better health choices. 20 years?? That’s long journey … why so long?? Well, because I believe the journey never ends. There are always changes in our bodies and in nutritional theories. For example, three years ago I would never have truly considered going gluten free. Now I’m considering it pretty seriously. I work every day to eat clean – whole foods that are primarily home cooked with love. I read food labels and know what ingredients make my body hurt. I know how much I can “goof off” before I get the diet smack down. My morning starts with a nutrient dense smoothie, and my afternoon snack is often a fantastic green drink I found recently. I avoid “discomfort foods” but I also don’t allow stress about those foods to overwhelm me … that would produce the same result as eating a bite or two of the food.

Challenge: SLEEP! Some nights I have perimenopausal symptoms (extra uncomfortable heat), and others my husband snores louder than usual. Often I get achy in the middle of the night and can’t find a comfy position.

Strategies: Keeping a standard sleep schedule all seven days of the week helps me a lot. Same time to sleep and same waking time means my body isn’t surprised every night – less change equals less stress. I also found a cool thing a few weeks ago called a Spoonk. It’s an acupressure mat that I lie on for 10-15 minutes before sleeping every night. It seems to calm my nervous system down and deepen my sleep. I also think that better sleep is helping my digestion – an unexpected bonus!

Well, now these aren’t secrets anymore … you know them too! Hope they help you make your RA easier to manage.

or … Why Patient Awareness is Vital to Improving Autoimmune Arthritis Diagnosis

I thought I was a pretty aware patient. I’m a massage therapist, holistic health coach, and a yogi. I know bodies, and thought I especially knew my own pretty well. But looking back, I missed some signals.

It’s been 14 1/2 months since I was officially diagnosed with Rheumatoid Arthritis. I’ve been thinking about that diagnosis process lately, because until about a month ago I thought I was one of the lucky ones. My diagnosis process wasn’t long. It wasn’t fraught with speculation about various diseases. None of my doctors ignored my requests or told me that my concerns were in my head. So I thought that I had been lucky enough to have been diagnosed in an early onset stage.

Now that all may in fact be true … but lately I’ve realized that my RA symptoms started long before I even noticed them. Why did I realize this? Because it was this fall (about a year after official diagnosis) that I really started to feel like “myself” again. I realize looking back that three changes happened in my body that I discounted.

1. My entire body temperature felt like it raised about 5 degrees. Instead of always being freezing, I began to be warm or even hot most of the time. I attributed it to many things, but never thought about it being a possible symptom of systemic inflammation.

2. My ring sizes increased half a size at a time when I had lost about 10 pounds. Again, this would have been a warning sign but I attributed it to things other than inflammation. There was also no obvious joint swelling at this time.

3. I began to struggle with constant low-level fatigue, sometimes increasing to temporary exhaustion. I guess my sense of logic kept me focused on the many possible reasons (I had a long list) why I might be over-tired. I never ever considered that I had a disease. The fatigue crept up on my slowly, and was building during a time when I was indeed burning the candle at every possible end. So if you were working full time, going to school part-time, starting a new business, leaving your full time job and dealing with the illness and death of a loved one … wouldn’t you just figure you were tired because of all that? I did.

All three of this things have resolved for me in the last two months. I believe this is due to medications, as well as lifestyle and nutrition changes. When do I last remember not having these symptoms? 2002. OMG – that’s almost ten years ago!

Does this mean I’ve had RA to some degree for this entire time? And what if I had gone to my physician with any or all of these symptoms and asked for help? Sad to say, but I’m pretty sure she would have patted me on my head and written me an anti-depressant prescription. My family even asked me to get some anti-anxiety or anti-depressant meds but I resisted. (Been there, done that. It was helpful believe me!) Somewhere deep inside I knew I wasn’t depressed … it was physical. But even so, I waited until my joints were visibly swollen to ask for help with medical diagnosis.

So here’s my new crusade … when people tell me they are tired all the time, I remind them that it’s not normal to be exhausted. Especially if it goes on for a long time and they are generally taking care of themselves. When people express their frustration at pain, I remind them that it’s not normal to be in chronic pain.

We can all do a lot of things to take care of ourselves – exercise, eat nutritiously, sleep well, hydrate, etc. But when all those things aren’t enough it’s up to us to ask for help! There’s no way to start working towards a diagnosis without first realizing we need to ask for help.

**This blog post is part of a larger Blog Carnival organized by Rheumatoid Arthritis Warrior, Kelly Young. Please visit the other posts as well … this carnival’s topic is “How Can Diagnosis Be Improved?”**

It’s been nearly a year since my RA diagnosis, and that timeline has been on my mind so much lately. There have been many ups and downs, but generally my sense of the prognosis is a positive one.

I take many more medicines than this time last year. And yet they are making a tremendous difference in my life.

I take many fewer naps, and have been able to be more active in my life. While naps are kind of fun, it’s better when they are a choice and not a necessity.

I hope that (for now) I’ve learned a lot more about where my limits are. I work less, I rest actively more. I have enjoyed and treasured slowing down because that’s brought me time spent with family.

I spend some time on Twitter with a terrific group of folks – most of whom are also living with RA or another chronic / autoimmune illness. This makes me feel empowered and part of a tribe that genuinely cares about each other.

I’ve learned that asking for help is good. And that toughing it out can lead to some serious downsides – typically not worth refusing to ask for help.

Despite healthcare reform, I am more concerned about my husband’s ability to retire since it is his job that provides my health insurance. It makes me want to find time to be politically active … although we’ll see how that fits in my life’s priorities.

I am so grateful for the good things in life – both those I can do easily, and those which take more effort. It’s all luscious!

Sometimes I tell someone I have RA and it doesn’t even register on their face. Like I just told them I have a cold or silver/gray hair. Colds go away in 10 days (if we’re not immune suppressed), but RA is forever.

It’s just frustrating … so I thought I’d share with you.  Even though you didn’t ask.

I wish I could tell the person that the easiest response is, “So what does that mean for you?” They don’t have to know anything about RA to ask me that. And I can choose how much I tell them … which depends on mood and the “need to know” factors.

Phew. Got that of my chest. Thanks for listening.

As a holistic health coach, I am blessed to be part of a large and vibrant community of progressive-thinking folks. I have learned a tremendous amount about nutrition and ultimately about wellness from my training and experience. In fact, it’s this kind of naturally-based healing/health that I have focused on my whole life.

Many years ago I was a leader for Weight Watchers … my first experience with “diet” and nutrition programs. I’ve done yoga for years, and spent a lot of time at gyms working out before that. I’ve had acupuncture. I’ve trained in Reiki and receive it regularly. I’ve received other types of energy healing regularly for years. I’m a massage therapist who depends mightily on a weekly massage (and have for 6+ years). I love having green smoothies and shopping at my local farmers’ markets. I believe in the power of prayer. And for the most part, I’ve always tried a lot of natural healing methods before turning to medical care.

And despite all this stuff … the RA symptoms started. Reiki and massage didn’t help (although they certainly didn’t make anything worse). I tried to keep eating healthy, but my ability to exercise became severely limited. I had to cut my work schedule back by 20% to keep the incredible pain in my hands at bay. Symptoms didn’t get better when I wasn’t working either. Weight gain ensued … and it was all depressing. I hung in there with the natural healing methods as best I could, but I knew it wasn’t going to be enough. I’d reached a fork in the road.

Choose left or right?

It was time to pursue medical diagnosis and treatment. You’ve read about that process here on the blog, so I won’t repeat it. But let me summarize the results: I feel a thousand percent better! Practically my old self. I continue to pursue all my natural health and wellness methods, which support the medical process that keeps me going.

What I discovered is that it isn’t a fork in the road, but a new path. I don’t have to give up the things that have always helped me. I don’t have to feel guilty about getting the medical treatment I need to be well. In fact, my rheumatologist has been pretty darn impressed with my incredibly low inflammation levels. The other RA indicators are still positive, but my liver is processing the meds in the healthy way and my overall symptoms feel mostly under control.

So for those who might judge because I’ve chosen to integrate these (sometimes opposing) paths … take a walk in my shoes before you tell me I’ve done myself wrong. And remember, I wear mostly “sensible” shoes now … not the beautiful higher heels of my youth. So it may not be as easy or much fun to be in my shoes … but I’m happy here. Isn’t that what life is all about?

**This blog post is part of a larger Blog Carnival organized by Rheumatoid Arthritis Warrior, Kelly Young. Please visit the other posts as well … this carnival’s topic is “Resistance to Rheumatology Treatment”**

When I turned 40 my aunt told me that my body would never be the same again. That it would change unexpectedly and often. That everything I thought I had figured out would become wrong. That these adjustments would keep happening every year or so for the rest of my life. None of that information was easy to absorb or adjust to! And that was before the RA symptoms started!

Here’s an example of my “new body.” This morning my pain alarm woke me up. Truthfully, it woke me twice (at least) last night and then once after it was light outside. I’d just like to know who installed this alarm. How do I control it and could I even disable it? It’s bad enough to use an alarm clock to wake up every day, but having one inside my body stinks!

Another example is that lately my relationship to food has changed. I love delicious food. But I’ve been wondering why I find most food a lot less interesting. Maybe it comes from meds or maybe just from dealing with so many annoying issues related to RA all day. Sometimes I just don’t have the energy left to get excited about meals. Except possibly ice cream … LOL.

I have always been a bit ADD, hyper and not very good at sitting still. Now I treasure those days when I can fit a nap in during the day. I know that I have to take a break to sit down or lie down during many of my former “normal” tasks. I am grateful that I can still accomplish a lot, since I know a lot of RA patients aren’t able to do their everyday stuff. But it all just takes so much longer now.

Does anyone know where my body went … because I’d really like to trade this one for the other one. Okay? Thanks. Bye.

This weekend I’ll be traveling to another state to visit with my mom. While I’m looking forward to seeing her & spending time together, it brings up three significant stress points as well.

1. The travel process itself
2. Her RA situation
3. My RA – especially relevant to the tasks she needs my help with

I’ll be traveling alone as I typically do for visits to see Mom. Keeping luggage light and easy to manage should help. Even so, I always check my bag so I have less to wrangle during layovers and airport navigation. And it turns out my first day of travel will be a 11-12 hour process. It’s mostly a very long layover, but airports just aren’t very comfortable after a couple of hours. Honestly, just the length of the day is daunting. Thankfully the trip home is more direct and shorter in duration – because by then I am sure to be tired!

I am quite comfortable in my own yummy memory-foam bed. Yet this trip will include two separate guest room beds of undetermined comfort/discomfort. Hoping there will be lots of pillows available so I can prop myself into a comfy position on my back. Side sleeping is still problematic due to shoulder flare issues. But hey, at least I don’t have to factor sharing the bed with hubby into the equation! ;->

My mom has RA that has gone virtually untreated medically due to her religious beliefs. She’s had some type of RA-related symptoms for nearly 10 years, but likely has had the disease for much longer. Her hips, feet and knees are so damaged that she’s now wheelchair bound. Other joints are so damaged that at 69 she’s dependent on nursing care for most of her daily functions.

I can’t begin to describe how difficult it is to see Mom like this. I just don’t know what the next RA-related issues will be for her, but they are bound to be uncomfortable and scary. And that’s probably a massive understatement.

I have chosen not to tell her about my RA diagnosis. I’m not sure how much longer I will keep her in the dark, but for now the choice makes sense to me. I am doing well with my various medications, and perhaps she won’t notice for a long time.

On the other hand, the list of tasks grows longer and longer as we approach the visit. I don’t really slow down or stop and rest enough. And on my last visit the pain levels skyrocketed and I hardly slept at the end of the trip. Since then I have learned to take better care of myself, so I just need to stay strong enough to make sure I slow down to rest during the day. I am still struggling with this at home … so who knows how it will go when I’m with Mom.

Maybe I’m just a big whiner … because in the big scheme of things I’m still doing a lot and mostly pain-free. But every day I still only get so many spoons, and traveling sure changes how they get used. Thanks for listening!