Friday, January 30, 2015

"You Matter" and the Art of Compassion

I had an experience this morning in a yoga class at my gym that was so significant, I would even venture to say it was spiritual in nature. One of those experiences when you know something special has happened and you cannot wait to share the beauty of your experience in the hopes that maybe it will help someone else, or make some type of difference in this world.

To back up a little bit, I recently commented on my personal Facebook page about a bunch of Bibles that I found in our home and kind of made a joke about how between my husband and I, we had a lot of Bibles; ironic considering the fact I felt like I had been having a spiritual crisis of sorts. However I have come to discover recently that my struggles have been the combination of an interpersonal crisis mixed with a religious one, rather than a spiritual one.

I have felt it necessary to try and work through some of the issues causing this upheaval in my life, both to improve the overall emotional quality of my life and of course, to improve my physical quality of life by reducing stress and anxiety. As I have been working through some of those various issues, I have started to look at my environment and many of the people in my life in a different way, some good and well, some not so good. I have started to look at myself differently and I have been able to make a lot of connections between my personality, behavior, events that have happened to me, and the way I function in the world. It is a process that has, as recently as yesterday, been gut-wrenching and also one which has made me realize that I need to make some changes in how I do business and who I do business with so to speak. The therapeutic process has left me feeling incredibly vulnerable and also feeling the need to strive to take care of myself on a much higher level than I am used to.

And here is where the yoga comes in. I have blogged before about the gentle yoga classes at my gym and how helpful they have been in managing many of my autoimmune symptoms. But I tend to be sporadic in how frequently I attend the classes. However last week, after a very difficult therapy session and subsequent discussion with my husband, I knew I needed to better manage some of my emotions. My previous vices have been bad food and alcohol. The food I have a problem with already, so that was a bad idea. The alcohol I don't have a problem with, but when I do drink (which is rare these days), I want to drink for pleasure and not because I need it as a coping mechanism. Because in my experience and in the experience of many people I love, that is a very slippery slope.

So instead, I impulsively attended an evening yoga class at my gym that I had not previously been to. The class went great and I decided then and there, that I would attend yoga at least 3-4x a week for now since it greatly helps me redirect my anger, fear, and all those other emotions that come from dealing with hard shit; not to mention that it helps pull myself into a more peaceful place.

This led me to a different yoga class this morning that I also had never attended. A different instructor and not a gentle class. The uncertainty of the class level made me pretty nervous, but it was the only class of the day and I was now needing yoga classes as often as some people need AA, so off I went.

The instructor realized I was new to the class and came over to talk with me. I briefly explained about my autoimmune and joint issues and he assured me that I could go at my own pace and he would provide alternatives for some of the more difficult poses.

The type of yoga practiced in this class is Kripalu yoga. Many people that live in my area are familiar with the word Kripalu because it is also the name of a yoga retreat center in western Massachusetts; where this style of yoga originated. Until today, I didn't know that Kripalu was also a form of yoga. What defines Kripalu yoga is its emphasis on following the flow of prana (life-force energy), practicing compassionate self-acceptance, and developing witness consciousness (observing the mind without judgment). Then you take that off the mat and into your daily life. 

The instructor explained to me that the word Kripalu means "compassion".


I was so in the right place. 
Because if it was one thing I needed right now, it was compassion.

I don't know if I can exactly explain the hows and whys of why this class was so different for me except to say that it had an emotional component that I had not really fully experienced in a yoga class before. There were many challenges for me physically during the hour long class because a lot of the postures and sequences were new to me, but through my breathing and by listening to the instructor's voice, I was in a very different place with my body than I usually am. An easier place. A better place. Then the instructor said a quote:

"Yoga is the practice of tolerating the consequences of being yourself.” ~Bhagavad Gita.

Honestly, my thoughts were so turned inward and focused, I don't remember when he said this quote, maybe it was at the beginning of class, maybe it was in the middle. What I do remember is the shock I felt go through me as he spoke the words.

Isn't that what I had been doing for weeks now?
Tolerating the consequences of being myself?

Well actually no, I hadn't been tolerating anything. I was scratching and crawling my way through it...always fearing what new revelation or fear was going to appear around the corner.

Now though, on this mat, in this room, by doing this yoga, I was tolerating the consequences of being myself: of being in a mind that over thinks and never shuts off; of being on the receiving end of events I shouldn't have had to go through, of being in a body that just doesn't work the way its supposed to.

A body that here, in this moment was, in its own way, working as it was supposed to.

I was giving both my body and my mind the one thing I really needed and that was...


Then at some point, we sat in a comfortable cross-legged seated position and the instructor is talking. At first, I am so focused that I miss the beginning of what he says. Until I look up and see him staring at us intently and I hear the words:

"You matter."

I'm in a class with a bunch of strangers and an instructor I do not know. Yet, I hear words of such compassion; words that at that exact point in time, I really needed to hear. Words that convey to me that not only does my existence matter, but so do my experiences and my interpretation of those experiences, both good and bad.

And, I start to cry.

I try not to cry because the tears come so unexpectedly that at first, I am embarrassed. But then I stop worrying about what other people may think and I just feel. I feel the compassion that not only comes from a total stranger, but the compassion that comes from myself, towards myself.

Compassion for my struggles.
Compassion for my flaws.
Compassion for the bad decisions I have made.
Compassion for the bad decisions made by other people.
Compassion for myself as a human being.

Two simple words, yet so powerful: you matter.

So tonight I am doing as the Kripalu way teaches: I am taking my yoga experience off the mat and into the world.

With you, right now.
By telling you that...

YOU matter.

Your spirit, your experiences, your energy, your beauty, your strength.

It all matters.

Please don't forget that.

Tuesday, January 27, 2015

Nutrition and Sjögren's

I posted on the Facebook page for this blog recently about a visit I made to a nutritionist. I had won, at an auction for the SSF (or rather, my husband won for me), a one hour consult with Tara Mardigan, MS, MPH, RD. She is a nutritionist in Boston, MA and also serves on the Sjögren's Syndrome Foundation's Medical and Scientific Advisory Board. Some of my readers asked if I would post the information about that visit and this is what today's entry is all about.

Anybody who follows my blog know that I feel very strongly that diet and nutrition play a huge part in dealing with autoimmune illnesses and is a very underutilized treatment option for all patients. I was running into a few issues with my nutrition lately, mostly because I was freaking out over what I was "supposed" to do. Since my diagnosis, I have been vegetarian, gluten and dairy-free, Paleo, and on the Autoimmune Protocol. I have had significant relief at times with the gluten and dairy-free, as well as the Paleo. However Paleo was causing me some other problems physically, so I had to loosen up on that. The Autoimmune Protocol didn't seem to do me much good except make it so that I became a recluse in my house because I couldn't eat anywhere else.

I have some emotional issues around food as well, many of which have improved over the past few years, but still come back to haunt me when my stress level is high. This most notably happens when I am stressed out over medical issues. I definitely have an addiction issue around sugar, processed foods, fast foods, etc. So going in all these different directions with my diet was really just making these issues worse over the past six months. I wanted to eat to fuel and heal my body, but it felt like the more restrictions I imposed on myself, the worse my eating habits would get after a while.

I was curious to see what an actual nutritionist had to say about it all, so off to Boston I went. Honestly, I am in Boston so much, I should just move there! The visit went well and the following is the recommendations she made to me in regards to my diet. Please remember, these suggestions are for me; most likely, you will have different needs so these suggestions should not be considered appropriate for everyone. That being said, I think a lot of the suggestions are just a good way to eat for all of us:

* Aim for a bigger, more balanced breakfast.

* Aim for balance at mealtime using the Five Fingers Chart. This chart states that at every meal, you should strive to eat one serving from each of the following groups: fruit/vegetable; carbohydrate, protein, healthy fat, and fluid. You can eat more than one serving of vegetables/fruits (except for starchy veggies and dried fruit). The more color, the better. Choose smaller portions for tropical fruits.

* Aim for a Powerful Plate at dinnertime. Choose the Healthy Eating Plate on days you exercise (50% vegetables/fruits, 25% carbohydrates, 25% protein) and the Less Active Plate on days you don't exercise or have a very light day (75% vegetables/fruits, 25% protein). Adjust the amount of carbohydrates you take in based on your activity level. Less active, less carbs.

* Count corn, winter squash, parsnips, peas, and potatoes as carbohydrates, not as vegetables.

* Fruit with skin: 1 medium-large piece or 1 cup (berries, apples, pears, grapes, plums, nectarines,oranges, grapefruit.

* Fruit without skin: 1 small banana or 1/2 up (any tropical fruit)

* Consider a high powered blender such as Vitamix or Blendtec to support your efforts and increasing fruits and vegetables (significantly) in smoothies will be a great anti-inflammatory nutrition strategy.

*Try adding an intentional healthy snack between breakfast and lunch and/or lunch and dinner if you have a gap of more than 3-4 hours between. Fruit with 0.25 cup of nuts or unsalted pumpkin seeds or sunflower seeds is a great choice here. You are looking for fiber, a small amount of healthy fat and/or protein.

*Consider trying some non-gluten free options from fresh-made sources. Refer to FODMAP grocery list for some digestive-friendly choices (not necessarily gluten-free).

* Try fresh cut vegetables, such as cucumbers or carrots with red wine or white vinegar as a crunchy nighttime snack that's sodium-free and low in calories.

* Consider the "One Bowl" method for nighttime or mindless snacking. You can eat whatever you want (healthy or unhealthy) but you'll first stop and put the food into a bowl. Don't judge the food or the amount, but take a minute to pause. This is a mindful eating strategy and may help you gradually make intentional choices that help nourish. This is a difficult strategy but if you're able to stick with it, it will help you lose weight because you'll eat less and choose more healthful options. The book that inspired this idea is One Bowl by Don Gerrard.

* Be verbal when eating out. Ask for extra vegetables, prepared without butter or sauces. Ask for a side of pasta or skip it. Skip the bread. Avoid shiny and battered foods. Get open-faced sandwiches. Have the burrito bowl with a small spoonful of rice. Skip or split appetizers and desserts. Choose fish instead of meat. Ask for lemon wedges to add flavor.

* When dressing your salad, use fresh lemons and a small amount of olive oil. If you want creamy dressing, ask for it on the side and use a small amount.

* Continue with consistent (but gradual) hydration throughout the day with water.

* Great job with exercise. Continue with walking and yoga and hopefully you will be able to gradually get back into running again.

Whew! I know that's a lot of information, but I thought it was important enough to share with all of you. I had the appointment right before Christmas. I did read the One Bowl book she mentioned and started to implement a few of the suggestions, but Christmas eating really threw me off. I did try some non-GMO bread with gluten in it. I found that in small amounts (and I mean SMALL), I could tolerate it, but larger amounts seem to be a problem. I found this out when I dropped my gluten and dairy restriction for several weeks around Christmas. I also developed a lot of digestive issues when I ate a lot of gluten and dairy, issues that I have never had before. I am currently on the last day of a 10 day detox/cleanse which was my own doing; it was NOT a recommendation of the nutritionist. I will be blogging about that tomorrow or Monday. My plan for the few days following the detox is to ease back into eating normally again and then go full steam ahead with the nutritionist's suggestions.

One of the big things that this visit made me realize and understand is that despite all the different "diets" and eating plans out there that claim to cure or help your autoimmune illness, in the end, it may just come down to great nutrition on a consistent basis for many people. I am not saying that the Autoimmune Protocol or eliminating gluten may not help your symptoms; I know many people who find relief eliminating different food groups, such as with me and gluten. However, I think that for me, the answer may be more in eating whole foods in balance with each other, minus the gluten and dairy I need to limit, as well as limiting processed foods, soy, alcohol, refined sugar, etc. So basically, just eating healthy!

Please feel free to comment below on what nutrition strategies you have implemented to help your autoimmune illness, or even just your general health.

Tuesday, January 20, 2015

Low Dose Naltrexone Update

I happened to notice that my posts on low dose naltrexone (LDN) get a ton of traffic, maybe even the most traffic out of any other topic. I am relatively certain that the reason for this is because more and more patients and medical providers are learning about all the potential benefits of this under recognized medication.

I have written about LDN a few times in the past and lately, I have also been getting some e-mails asking where I am at with it. So I figured an update, even a brief one, was in order.

I am currently taking 2 mg of LDN every morning. If you have followed by other LDN posts, you will know that this is my third and final attempt at making LDN work for me. I have definitely had benefits from it in the past, but the insomnia issue negated any positive effects I was getting from it in terms of fatigue and pain.

I got up to 2 mg over the past several months and I think that is a critical reason why I am doing so well with it this time around. I am taking it in the morning. There are so many different opinions amongst the "experts" as to whether morning dosing is therapeutic at all. And honestly, I don't feel the need to get into that debate. What I do know is that it has helped my pain and fatigue and that is good enough for me. If insomnia is a big issue for you with LDN, I encourage you to try morning dosing.

That being said, my goal is to try and switch it to evening dosing to see if it makes any difference in my symptoms. Since my sleep has been great lately, I will probably do that soon. I am also planning on increasing the dosage to 3 mg at some point. I am waiting on that because I want my body to take its time adjusting to the 2 mg and I want to try switching it to the evening. I also just got more thyroid better regulated and I know that a dose change will likely mess with that. Sometimes its good to just go with the flow.

I don't have ANY side effects at this point with this current dose. While it has improved some of my symptoms, I still have a long way to go and I will see what happens with the changes mentioned above.

If this is the first you are hearing of LDN, I encourage you to do some research and talk to your doctor. Most medical providers have not heard of it and they require some information. This medication has very low risk of side effects associated with it and I think it is worth your while to investigate it further as a possible treatment for yourself.

Monday, January 12, 2015

10 Day Green Smoothie Cleanse

After careful consideration and a lot of research, I made a decision after the holidays to embark on a cleanse/detox. I will start by saying that I have never done anything like this before, mostly because I don't believe in fad diets, or any diet for that matter, and also because I'm not sure, with all my health issues, how good it would be for my body.

However, I had been having some new digestive issues and some of my other autoimmune symptoms were acting up sporadically here and there. I also really overdid it and made some consistently bad food choices over the holidays and I was trying to get my food cravings under control. The digestive issues were not anything severe that impaired my daily living, but I am slightly paranoid about my family history of ovarian cancer and I am at the age my mom was when she was diagnosed. The most overlooked and under recognized symptoms of ovarian cancer are the digestive issues I was having such as bloating, gas, and constipation. Since I have never had any issues with these symptoms before and was suspicious about my diet being the culprit, I figured I could eliminate the ovarian cancer concern, and therefore another doctor trip, if I tried something like a detox or cleanse.

I did a lot of online research and decided to do the 10 Day Green Smoothie Cleanse by J.J. Smith. I thought this plan would be best because Ms. Smith is a nutritionist and I already have a lot of green smoothie experience. I also felt that it was a safe approach because it incorporated all the essential nutrients and foods groups (vegetable, fruit, protein, and carbohydrates) that I thought were important. I also liked that the plan included healthy snacks in between the green smoothie meals. I bought the Kindle version, which got amazing reviews on Amazon, and you can find the book HERE. In my opinion, its worth every penny!

I started the 10 days on January 1st; not because it was a new year but because it would be easier to keep track of what day I was on when I was making the recipes. I also knew that in terms of my work and medical appointment schedules, my load was lighter for that period of time.

I am not going to go into every single detail of the plan because I feel that its not fair to the author to put all that information here and therefore risk affecting book sales. But the basic outline of the program is that for 10 days, you drink a green smoothie for breakfast, lunch, and dinner. Each day she gives you a different recipe and you can either make your whole batch for the day or divide it in two like I did. If you have a regular blender, you will need to divide it in two as it will not all fit. I was in the market for a new, really good blender anyways after seeing a nutritionist.I found a Blendtec on Amazon at a steep discount and it was also worth every single penny. This thing is amazing! Anyways, you DO NOT need a fancy blender for this plan or to make green smoothies at all.

Each recipe is specifically formulated to maximize results. This was designed as a weight loss program and even though that was not my primary objective, I was curious to see how the results would be. The book claims that if you adhere to the exact program, you will lose between 10-15 pounds.

In between your meals, you can have snacks and she actually encourages this in order to maximize your metabolism. The snacks are limited to hard boiled eggs (I don't do eggs at all!), small amounts of unsalted nuts and nut butters, apples, and raw vegetables. That's pretty much it. Only water to drink except for the recommended detox tea which you can find in any grocery store. There is an option to add a plant based protein powder which I did. I use Vega protein powder. The plan also encourages the use of a supplement to help you go to the bathroom if you are having trouble, but I never needed to use it.

Overall, I was compliant with the program. When I started with detox symptoms, I did add more protein powder than suggested and I was OK with that as I felt my body needed it. I also stopped the detox tea after the first few days as I realized it was causing a severe migraine, separate from the detox headaches I was getting. I felt that it really wasn't worth it. If I ever do the program again, I would search for a different detox tea. I also had a few extra bananas during the 10 days as there were a few times my blood sugar dropped more than I was comfortable with and I felt like I was already getting enough apples in my diet at that point.

So for me, it was a good program. It was also incredibly difficult, especially days 2-6. I had joined the Facebook page with the same title for some support and I saw that detox issues were not unusual. I had a mild-moderate headache days 2-5, stomach pains days 2-6 (to the point where I took Prilosec every day, which helped), and severe muscle pains around days 3-4. I would read on Facebook that by day 6, everyone would start feeling fantastic but for me, that really didn't come until day 9, although days 7 and 8 were much better and day 10 was the best day for me. You're probably wondering why I even stuck with it when I was having all these issues. Well since I had been consuming so much junk, especially dairy, gluten, sugar, etc., I knew that this was part of the process. Also even though I initially felt lousy, I saw those original digestive issues begin to ease up and that motivated me to keep going.

During the 10 days, I also knew that I didn't have a lot of social obligations and that made it easier to resist temptations. My husband was incredibly supportive of the plan. I told him I wasn't cooking for the 10 days and he made a huge effort to not bring temptations around me. I did end up cooking on two nights for him because honestly, I missed doing that for him and I missed the aroma of food. Not too much aroma from frozen fruit and vegetables! I also backed off my exercise regime a little in order to give my body the rest that it needed during the process.

The only negatives that I could find with the program were that they added stevia to the recipes. Anyone who makes green smoothies knows that the fruit gives you the great taste and sweetness, and you don't need stevia. There was maybe one recipe that benefited from it as the fruit used was not as sweet. The stevia is optional so if you do follow this plan, check the taste of your smoothie before adding the stevia. Also, the amounts of fruit used was actually much more than I was used to. Although I read comments on Facebook from diabetics who seemed to do OK with it, I wondered for someone like me, who has PCOS, if that much fruit hinders the weight loss amount.

In the book, there is also a chapter about what to do after the 10 days is over. I am two days out now and gradually, I am reintroducing more foods back into my diet. This phase is very important to me because I want to try and identify which foods may be giving me issues. My plan is to still keep gluten, most dairy, soy, corn, GMO-laden foods, most processed foods, artificial sweeteners, alcohol and a few other things out of my diet for now. I am still having at least one green smoothie a day for a meal and will probably continue that indefinitely as it is such a great way to flood my body with nutrients.

So, here's the benefits that I got from doing this program for 10 days and then continuing a clean diet afterwards:

1. I am sleeping SO much better, its not even funny. Best sleep I have had without sleep medication/supplements in years.

2. Since day 10, my energy level has skyrocketed. Its almost scary for me because I am so not used to it. It has only been a few days so I don't know if it is a fluke or not, but time will tell.

3. I got sick out of the blue around day 8 with a cold, including a low grade fever, that has been going around. I stuck with the plan, even though I desperately wanted chicken soup, and less than 24 hours later, my symptoms were gone. It was freaky. I have never bounced back that fast, even pre-Sjögren's.

4. My sinus and allergy issues have improved some.

5. At this point all my digestive issues are almost completely gone.

6. Food cravings have diminished dramatically.

7. For a variety of reasons, I was having some anxiety issues and right now, the anxiety is significantly better. My mood also seems more even.

8. I have a little improvement in my joint pain. I cannot directly relate this to the cleanse at this time like I can with the other improvements, but its worth noting.

9. Candida issues have improved.

10. I lost 8 lbs. Many people on the Facebook page would be disappointed with that. For me, that is a very reasonable and safe weight loss amount for 10 days. It's a journey, not a race!

If you decide to try this cleanse, please feel free to contact me or ask any questions in the comment section below. And check with your doctor. I did not, but you know what they say: do as I say, not as I do!

Good luck!

Friday, January 9, 2015

Book Review: As My Body Attacks Itself

In December , I was approached via e-mail  by a woman, Kelly Morgan Dempewolf, PhD, with Sjögren's syndrome, who asked if she could send me a free copy of her book (that is my disclaimer by the way) As My Body Attacks Itself, in order for me to do a book review on this blog.

This self-published work, which is 192 pages, is a memoir describing her experience with Sjögren's syndrome. As a patient who published her own book on the illness, of course I was instantly intrigued as to what she had to say in this book. Here is the  book description taken from the back cover of the paperback:

"50 million Americans suffer with an autoimmune disease and countless more deal with chronic pain, fatigue, and illness. These diseases are often invisible, yet they touch every part of a person's life and of the lives of the people they love.

This book is an honest, raw look at the thoughts, concerns, fears, and struggles as Kelly deals with Sjögren's syndrome (the second most common autoimmune disease). The story isn't just about Sjögren's, or even just autoimmune disease. It's for everyone impacted by chronic disease of any kind.

Kelly's hope is that patients will find solace and validation; friends and family will gain understanding and the abilities to empathize, communicate and support loved ones; and medical professionals will gain understanding and ability."

The book is divided into 41 plus chapters and reads similar to a person's journal or even an online blog. Each chapter is divided into different topics and these range from topics like disease envy and pain medication to others like brain fog and parenting. Each chapter is written from her perspective and details, quite elaborately, her journey and experiences with each of these issues or events. If you are someone who has Sjögren's syndrome, I am certain that you will read parts of yourself, and your experiences, while traveling through this book.

Because this book is a story about a personal journey, I don't think it is possible to fairly review the book beyond that because in doing so, a reviewer would be judging another person's very real and very painful experience battling an often misunderstood and little-known illness. And I feel that nobody has the right to really do that.

Rather, I think it is important for you to read the book yourself and see what comfort you may be able to find in reading a story about a brave woman going through a struggle similar to the one you, or your loved one, may be going through right now. You can find Kelly's book on Amazon by clicking HERE.

Happy reading!