Friday, January 31, 2014

Sjögren's Syndrome Foundation January 2014 Newsletter


The January 2014 issue of the Sjögren's Syndrome Foundation newsletter, The Moisture Seekers:





The "I Stood Up For Sjögren's" article. Thank you to the SSF for letting me be a part of their newsletter.




Thursday, January 30, 2014

Where You Can Find Tales From the Dry Side


I have been getting a lot of messages lately inquiring about where to purchase Tales From the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjögren's Syndrome. Not everyone likes to shop online or has an Amazon account and I figure this is a good opportunity to be passionate about the retail places that have been so supportive in carrying the book.


1. The Sjögren's Syndrome Foundation: I mention the Foundation first for a reason. They make a profit on every book sold through their bookstore or at their conferences, whether you are a member or not. However if you are a member, you can purchase the book for an unbelievably reasonable price of just $10. And because I have Sjögren's, monies made by them to go towards research, etc. is very important to me.


2. Broadside Bookshop: This great independent bookstore is in Northampton, Massachusetts. I have a passion for local bookstores and this one in particular is a favorite of mine. Even if you don't live in the Northampton area, it is worth the drive. Well, within reason that is! They have a wonderful selection and their location in downtown makes for a great afternoon.


3. Booklink Booksellers: Another great independent bookstore also located in downtown Northampton where you can find Tales From the Dry Side featured in the local authors section at the front of the store.


4. Barnes and Noble: You can find Tales From the Dry Side in their online store, but I recently found out that the stores are going to carry it at well. This is dependent on if the buyer for your particular store has purchased it for the shelves so if you do not see it, ask for it. You can also download it for your Nook via their website.


5. Amazon: What I like about Amazon is that they offer a Kindle version of the book and that may be more feasible for people who have economic hardship. I have been quite surprised by the Kindle sales.


6. Outskirts Press: Outskirts Press is my publisher. They offer a great deal. if for some reason, you want to order 10 or more copies of the book, you are discounted 50% on each book. That's a whole lot of savings!



Thursday, January 16, 2014

Whole 30 Autoimmune Protocol


I feel like revamping my diet is a constant and ever evolving process. I don't mean "diet" as in a weight loss program, but in terms of using proper diet to treat my Sjögren's syndrome. About a year ago, I embarked on a Paleo eating plan, with the first month dedicated to the autoimmune protocol of the Paleo plan. The autoimmune protocol of any plan is super strict and is not even a diet. You can find an excellent explanation of the autoimmune protocol (AIP) HERE. It is a thirty day elimination period of the foods that are most thought to cause inflammation in the body. Due to a death in my family on Day 2, things did not go well. I know it is an excuse, but the amount of stress I was under was off the charts. I did however stick with the Paleo plan for the first half of the year, and I had some good results from it when I was compliant: most notably less pain and fatigue.


Things pretty much went to hell for me in the nutrition department (I like that word better than diet) when I went to Disney for my honeymoon. We came back the beginning of October 2013, the holidays came, etc. The worse I ate, the worse I felt. At first, it wasn't noticeable because I was on a hefty dose of prednisone to quiet down some symptoms prior to my honeymoon, but as I started weaning the prednisone, it became apparent that my  food was affecting my health.


Part of the issue is not autoimmune related at all. At least I don't think it is. Once I came back from Disney, I began to realize that some of my food issues had resurfaced. By "issues" I mean addictions to certain foods. I know being on the prednisone didn't help with this, but things seemed to be worse. I was constantly craving processed food that were laden with carbs, sugar, and the such. This was not a new issue for me, but it seemed like now, the more I ate these foods, the worse I craved them. My weight creeped up and up and I felt like I was no longer in control. I know part of the carb cravings was related to the prednisone and that a lot of the foods I was eating are MADE to be addictive (i.e. McDonald's), but at the end of the day, it was still my decision to eat them. They were my choices and I was making some poor ones at that.


Meanwhile, since coming back from Disney, I had started exercising on a regular basis because I was on prednisone and that afforded me the ability to be able to do more with my body. The exercise actually helps my autoimmune symptoms, but I began to wonder about how much better I could feel if I reeled in my diet again. On a blog I follow, I read about the book: It Starts With Food by Dallas and Melissa Hartwig. This book changed my life. Seriously.


It Starts With Food talks about the Whole 30 eating plan which is basically a Paleo diet with some tweaks, mostly eliminating any type of sugars (except in fruit and veggies). The premise of the whole plan is that you need to eat whole foods in order to optimize your body's health. While Paleo talks about how our ancestors ate as a premise for the eating plan, the Whole 30 talks a lot about the effects that these processed foods have on our bodies. It is a no-nonsense approach to getting healthy. No excuses.


I decided that I was going to do a Whole 30 (meaning you do the plan for 30 days with absolutely no cheating) and I was going to step it up by adding in the autoimmune protocol of the Whole 30. My plan was to start the day after Christmas but I had my first race, a 5K, scheduled for New Year's Day and the authors suggested not starting a Whole 30 before any big physical event, because the plan itself can take a toll on your physical body the first two weeks. As much as I HATE starting a new lifestyle change on New Year's, that was my start date.


Today is Day 16 for me. I will be honest, most of the 16 days have been pure hell because really, this is HARD!! I have a few expletives for it, but I will try and refrain...for now. Being on a Whole 30 AIP means I can eat only certain foods for 30 days and then I can start to reintroduce some healthy foods I omitted over a period of a few months to see if my body can tolerate them. By reintroduce, I mean like eggs, nuts, and seeds....not pizza, soda, or bread.


What I can eat: meats (chicken, turkey, beef, fish); all vegetables except eggplant, potatoes, tomatoes, and all forms of peppers except black pepper; fruits; and healthy fats such as coconut oil and olive oil. Oh, and spices that are not seed or pepper based. That one gets tricky!


Yeap, that's it.


No grains of any sort, no dairy, eggs, nuts, seeds, sugar, artificial sweeteners, sauces, additives of any type. I am sure I am forgetting some things, but you get the gist.


And this means I cook, ALL THE TIME! It is insane how much I have used my kitchen lately.I try to double up my cooking so I have something to eat for breakfast and lunch the next day, but when you are making your own salad dressings (olive oil only!) and cannot grab a protein bar when you are starving after a run, it gets tricky...and time consuming. Cheating is not allowed because even the slightest bite of an inflammatory food can have a negative effect on your gut, which is thought to be the primary source of injury in autoimmune illness. Eating out is next to impossible although I was able to twice at Red Robin. I knew they were probably cooking in forbidden oils such as canola or safflower oil, but I didn't think that would be enough to trigger me. And, I had to protect my sanity.


The first ten days or so was a nightmare for me, physically and emotionally. I had physical withdrawal symptoms, despite having had cut out gluten and dairy after Christmas. These symptoms included dizziness, dehydration, increased fatigue, headaches, and joint pain. For several days, it felt like my blood sugar was dropping several times a day. I stopped doing all exercise for the first week until I felt that things were more stable. I became extremely moody and restless as I started to crave all the unhealthy foods I was previously dumping into my body. Honestly, I couldn't even be in the same room as some of my trigger foods such as pizza, chocolate, even gluten-free bread!! I even went as far as asking my husband to take some Kit Kats we had gotten at Christmas to work with him. He forgot. I was home alone. I tossed them in the trash. Swear to God.


Things have gotten better though. The physical symptoms went away and despite weaning down my prednisone from 20 mg/day to 10 mg/day over the course of the past few months, my autoimmune symptoms are actually improving. The improvements have not been that drastic yet, except for my sleep. I am sleeping like a rock most nights for one of the first times in four years. I even dream now! And as anyone with an autoimmune illness knows, more sleep=less symptoms. Despite increasing my running mileage, most of my muscles and joints are pain-free on most days.My energy level has improved and despite having some mild respiratory issues around the holidays, my breathing is now 100% fine. No migraines and my mood is on an even keel. I have not noticed an improvement yet in my Raynaud's or dryness issues and I would say that my dryness issues are even a bit worse. But it is January in New England; that is what always happens to me.


The past forty-eight hours has seen a dramatic improvement in my food cravings. This has been quite the blessing. Although temptation is still a challenge more times than I would like, I find that I am not thinking about food so much. I have also become quite a better cook over the past two weeks! It feels freeing to feel in control.


I don't know what the next few weeks are going to bring, but I am cautiously optimistic. While I do not think that this eating plan will likely "cure" me of Sjögren's, I am hopeful that it will help control my symptoms enough to further improve my quality of life. Because as hard as this Whole 30 AIP plan is, it's not half as hard as living with a debilitating, chronic illness.


Friday, January 3, 2014

Running My First Race


The start of 2014 was very exciting for me.


Back in early October, when I returned from our honeymoon in Disney, I decided that I wanted to try running so that someday, I could run one of the Disney race events they have every year. I had been taking a good dose of prednisone (20mg) and figured if I ever was going to try running again, this would be the time. I had attempted running a few years ago for a month or two and had to stop because of my joints. In addition to the desire to run through Disney, I was also inspired by two online friends I had met, Lucy and Heidi, who both also have Sjögren's and have either participated in races, or were planning on doing so.


As I have blogged before, I took the running thing seriously, especially because of my joint, fatigue, and respiratory issues. I read a lot of books, magazines, and online articles about strengthening exercises and I made sure I did regular yoga and Pilates classes, which greatly helped my running and overall health. Sometime in October, I started the Jeff Galloway Easy 5K training program. I highly recommend it if you are a new runner. It is a run/walk program that gradually builds up your stamina and endurance. I found the run/walk concept (I do a 1min./1 min. ratio) to be much less daunting than trying to run an entire distance. I also started regularly using a foam roller for my muscles, which has helped me physically in so many ways besides in terms of my running.


My goal was to run a 5K on January 1st; a race called Gordy's First Race in Westfield, Massachusetts. I figured it was a good way to start the New Year and yet, gave me enough time to complete the entire Jeff Galloway program. The bottom line is, I don't know how hard running is for everyone else, but it is very difficult for me and I wanted to make sure I was well-prepared. I also knew that by January, my prednisone dose would be significantly less and that fact worried me a little bit.

Getting race ready!


New Year's Day was the day of the race. I was doing OK from a physical standpoint, but sleep was hard to come by the night before; not an unusual thing for me unfortunately. And the closer we got to Westfield, the more nervous I became. What on earth did I think I was doing?? A 5K race is not meant for an overweight 40-something year old with severe autoimmune issues. Or so I thought. My husband and I drove to Westfield, got our race bib numbers, and spent some time warming up by jogging/walking for a few minutes. My brother, Dennis, also was running the race with us. By this point, I was hyped up on adrenaline.


Pre-race: my husband, me, and my brother.

I have to say, there is nothing like the atmosphere of a race. I would guess that there were about 200 runners present; some were doing a 5K and some a 10K. I thought it would be better to start at the back of the pack because I am so slow and because I do a combination of running and walking. I told my husband and brother that I wanted them to not worry about running with me and see how well they could do, since they are both in much better physical shape than I am in. It was pretty cool that I then heard someone shouting my name. I looked over at the spectators and there was my mom who had showed up to cheer me on!


Off we went and within about a minute or two, the ENTIRE pack was way ahead of me, except for two women behind me. I suspected that this might happen because I had checked last year's results and most of these runners appeared to be very fast! I tried to stay focused on my breathing and my stride, but all of a sudden I was faced with one of several hills that occurred the first half of the race. Although I had looked at a course map beforehand, I was surprised by the incline.


This is where I panicked a bit and totally lost focus.
I actually considered turning around I was so panicked.


The problem with panic is that is increases your heart rate and breathing, which for someone like me, who already struggles with that, it makes things a lot worse. It did not help that the temperature was about eighteen degrees and I was running into the wind. That's what happens when you sign up for a January race in New England!!


As I tackled the hills,I found myself needing to do much shorter intervals of running/walking then in my training runs. I had done a little bit of hill running in my three months of training, but apparently not enough. Then I saw some people standing outside their homes on the race route. And I saw the traffic cops. They were cheering me on. Here I was running by myself (I kind of regretted that!), with nobody around me because I was so behind everyone else, and they were all cheering me on. It helped, a lot. I tried to settle myself down and decided that no matter what happened, I was finishing this race. I worked so hard for this. This was MY race; not anyone else's. I was only in competition with myself.

Lone ranger!

Because the race was up and back, people started to run towards me on their way back to the finish line. I was not even halfway yet, not even close. I saw my brother run past me and then my husband. He had my asthma inhaler on him and I thought it might help if I took another hit. That was a HUGE mistake. What was I thinking?? All it did was jack up my heart rate some more and didn't help my breathing. Live and learn.


My husband then decided, against my protests, to do the rest of the race at my side. He wasn't taking no for an answer. I felt bad because he could have finished well, but to be honest, he was a huge help. As we hit the halfway mark and turned around, other runners would race past us. It was probably obvious that I was struggling, but several of them yelled out words of encouragement to me as the sped past us.


"Keep going!"
"You're doing great!"
"You can do it!"

It was simply amazing. Let me tell you, if you are a good runner, are experienced at races, and see someone like me struggling, yell something out to them. NEVER underestimate the power of a few words. You never know the challenges someone else is facing when they are attempting to do something like this. So to all those strangers who rooted for me, thank you. I am forever grateful.


Not too long after we started back towards the finish line, I realized that I forgot to check my watch  to see what my pace was. This was the whole point of wearing one; that's how out-of-sorts I was compared to my training runs! I looked down and realized that I was running a 14-15 minute mile, which was even better than I expected, especially with those hills. I was doing fine if I stopped comparing myself to everyone else. I also came to realize that the two women who were behind me when we started never turned around, which meant that they were doing the 10K and I would probably come in last for the 5K. I put that out of my head and just concentrated on one foot in front of the other.


I knew the finish line was coming and it was important to me to finish strong, but my lungs were on fire. And I mean fire!! My legs held up pretty good, but those lungs...geez. The traffic cops kept cheering us on. The elite runners kept shouting words of encouragement. My husband kept reminding me what I was supposed to do, like breathe. We rounded the corner that led into the front of the school where the finish line was. I knew that I was overdoing it and probably wasn't getting enough oxygen at this point, but I saw the finish clock all lit up and the banner. I saw my mother and brother at the finish line and honestly, I would drop to the ground at this point before I would stop running.


My goal was to do the race in under 50 minutes. My official time was 45:13. By far, my best time ever, by several minutes.

Finish line!

I will admit, I wasn't feeling too hot, but I walked around, drank a ton of water. I don't have any other races to compare this to, but I thought Gordy's Race was very well run. There was plenty of pizza, hot chocolate, and water afterwards, although since I was starting a new eating plan to help with my autoimmune issues, it was just water for me. We waited around for the race people to post the final results to see if I indeed came in last like I suspected.


I did not come in last. I came in second to last.

Guess who came in last?
My husband.

One of the worst photos of me ever taken. But look at my husband's expression!

I was so focused on trying to finish without passing out that I didn't realize when we crossed the finish line, he had put me in front of himself; just so I wouldn't be last. Honestly, it wouldn't have mattered to me at that point. I was so proud to just finish. But the gesture was so unbelievably touching that when I was posting a Facebook update from the car on the way home, I started bawling like a baby. He's my biggest fan. My biggest champion.


I woke up the next morning feeling different about myself, mentally. The physical effects were still lingering a little, mostly the asthma stuff because really, asthmatics probably should not be running in cold temps like that. But mentally, that was a different story. I felt like I had accomplished something huge. Something that some people told me I would never be able to do. And I did it. Who knows what else I might be able to accomplish physically over the next six months or so. Maybe a longer race. Maybe a faster race. Maybe I can get off prednisone. Maybe I can go back to work.


Running this race, with all those other athletes, made me feel like more than my illness. Instead of cursing my body for what it can't do, I could feel proud of it for what it can do.


Completely life-altering.