Tuesday, January 31, 2012

Nutritional Healing Update

“Eat food. Not too much. Mostly plants.” ~ Michael Pollan

It has been about two and a half weeks now since I made some radical changes in the way I eat. A lot has changed and I have to say it has been quite the journey so far. A few close family members and friends have been a great support in this HUGE learning process and I am grateful. I have also received a lot of questions and comments regarding what I am doing so I thought I would do a blog update on how things are going and post some helpful information I have learned along the way thus far.

Since starting this new way of eating, I have been better able to define exactly what it is I am trying to do. What is that? Well to start with, I am completely gluten and dairy-free (including casein). I am soda and fast food free. I have drastically reduced my refined sugar intake and have reduced my processed food intake. I am working on the artificial sweetener thing which at this point is only in my gluten/dairy-free flavored waters; which I have cut back on. I am eating semi vegetarian and trying to focus mostly on whole foods.

At this point, I think I am past the nasty withdrawal phase of eliminating dairy, gluten, and refined sugar. And yes, if you spend some time researching this, you will find that all three can be addicting. I say I am through the withdrawal because despite being on a large amount of steroids (which for many of us causes excessive sugar/food cravings), I am no longer willing to sell my soul on an hourly basis for a loaf of garlic bread or a regular chocolate chip cookie. Not that I don't desire something like that once in a while, I do. However it no longer consumes my thoughts. It is a very freeing experience and I am sure at some point, I will blog on food cravings and addictions.

I think it is too soon to say if I noticed a difference in my autoimmune symptoms, as that can take several months and it has been all of two and a half weeks. I am in the throes of a very difficult time with my Sjogren's syndrome which is bringing up new significant issues. I am also on a hefty dose of steroids (orally and intravenously) which, as some of you know, can help a whole host of problems in addition to the ones I am taking them for. This can make it difficult to distinguish if the steroids are helpful or the diet. I did start the diet and the increased steroids at the same time BUT that being said, I have absolutely no issues at all with my sinuses or allergies; which have plagued me before I ever knew I had an autoimmune disorder and are exacerbated by the Sjogren's. Those issues are completely gone at the moment. Prednisone is also notorious for causing weight gain and swelling. I am no longer bloated, have no swelling, and the scale this morning says I am down seven pounds despite not being able to exercise or get much physical activity at all for that matter.

Right now, that's all good enough for me to keep going.

One of my strengths in this whole process (in addition to some amazing support) has been my outlook on what I am doing. It's a challenge and I am viewing it as such. Yes, it sucks sometimes, but I just stop and think about the good things I am doing for my body and my future. Not to mention my fiance's health; which is good, but I would like to keep it that way! I make it a challenge to eat plentiful and well without being deprived. It means a lot of cooking, browsing the stores, and reading. Not to mention planning! One of my goals is to make food pleasurable, without making it the enemy.

I have discovered a whole world of foods and tastes that I never knew existed and I have to say, that is exciting! I have had a notorious reputation amongst my family and friends for being a very finicky eater and never in a million years did I think I would eat foods like, lentils, beans, hummus, kale, and yes, even tomatoes. But I have to say that are very few foods I have tried that I hated or wouldn't try again in a different way. The image that comes to my mind with that statement is Chuck and I standing at the kitchen counter trying our first vegan cheese slice by a company that shall remain nameless for now. I knew when I sliced it that it was going to be sketchy! Sure enough, we each had a piece in our mouth and as I was chewing it and trying not to vomit, I saw my 6'2" fiance lean over and spew the nastiness right into the trash can without hesitation. It was a hysterical moment I will remember when I am ninety.

As I am eating more natural and unprocessed foods, taste has become a new experience. I know this sounds bizarre, but I taste food differently now. When I do eat meat, I enjoy it so much more because it is not smothered with dairy, bread, or preservatives. I am learning quickly the value of a fully stocked spice cabinet and I am purchasing fresh herbs on a regular basis for the first time in my life. It's pretty neat.

I know as the weeks and months progress and I attempt to get through this current autoimmune crisis, I will be eating out more in public and the challenges with that will likely increase. But I think I am building a good foundation at a time where it is important for me to play an active part in getting well. Changing my diet may not cure my autoimmune illness and it might not even help, it but in the end, I think it will make me healthier in so many other ways. And I have spent enough time being sick. I have things to do and a life to live.

One bite at a time.

The following is a list of processed/packaged foods that I have found helpful in transitioning to a more plant based, whole foods diet. In an ideal world, processed foods will not be part of my diet but I cannot sit here and honestly say that at some point, I will be eating completely processed food free. I just don't know, I am trying. Meanwhile, these are healthier, not to mention delicious alternatives.

Cedar's Garden Vegetable hummus
Cedar's Lemon hummus
Mediterranean Snack Company Rosemary Lentil Chips
Tofutti Better Than Cream Cheese
Tofutti fake sour cream
Food Should Taste Good Lime tortilla chips
Food Should Taste Good Sweet Potato tortilla chips
Late July Organic Sea Salt snack chips
Daiya shredded cheddar cheese
Enjoy Life Seed and Fruit Mix
Organicville salad dressings and condiments
Earth Balance natural soy free butter spread
Unsweetened soy milk
Soy yogurt
Sunflower butter

I have indulged a bit on Amazon in the book department. Since I am not typically a big shopper, this probably has our mailman wondering what the heck is going on since he has been here several times over the past two weeks. God bless Amazon gifts cards!

These are the books that I have read and found incredibly helpful and informative. There are a few more behind them just waiting to be explored.

The Pure Kitchen by Hallie Klecker
Gluten-free, dairy-free, and low sugar recipes. She does a nice job in the beginning of the book explaining what a pure kitchen is. I particularly like her approach to using substitutes for sugar and the two recipes I have tried so far have been great.

Crazy Sexy Diet by Kris Carr
This book just rocks. Written by a cancer patient who has a tell-it-like-it -is approach, she had me at the first politically incorrect word she used. I read an excerpt to Chuck, while I was waiting to have an MRI done, and he laughed out loud. I learned an astounding amount of information about the pitfalls and dangers of gluten, dairy, etc. Some may find some of her approaches radical; I find it holistic and informative.

The Happy Herbivore and Everyday Happy Herbivore by Lindsay S. Nixon
I liked The Happy Herbivore recipes enough to buy the second book so that is a good sign. I bought the first book before I knew I was going dairy and gluten-free which many of the recipes are not, but substitutions are not a big deal. Then I delighted to see that Everyday Happy Herbivore listed recipes according to allergies like gluten and dairy. There were also suggestions about substitutions. Both books have helped me enter the vegetarian world much easier.

Wednesday, January 25, 2012

Helping the Person With A Chronic Illness.

Chronic illness: any disorder that persists over a long period and affects physical, emotional, intellectual, vocational, social, or spiritual functioning.

I have had a chronic illness called Sjogren's Syndrome for approximately four years. I say "approximately" because in my mind, that was about the time my noticeable symptoms began to have an impact on my level of functioning. Looking back, it certainly seemed that the Sjogren's may have been lingering for years before that. I didn't notice though because I was too busy living my life.

Sjogren's Syndrome, like all autoimmune diseases, is a chronic illness. That means that it is always there. It is not like a cold, broken bone, or flu where you get treated, feel better, and continue on with your life in the usual manner. It is always a part of your life, every single day. Like a roller coaster, it has peaks and valleys. Sjogren's Syndrome also has the great misfortune of being an "invisible illness" which means that its devastating effects usually cannot be seen or noticed just from looking at the person. Maybe not by speaking with the person either. A person who was seen at a social event and appeared "fine" may be updating their Facebook status six or twelve hours later stating how sick they are. It's not an exaggeration or a plea for sympathy. Just the way it works.

I believe that I have worked very hard at being a person who does not solely identify herself by her illness. I think for the most part, I have succeeded at this. However I also believe that I am at a crossroads with this issue. In an effort to diminish the impact of Sjogren's on my existence, I have turned a blind eye to some of the unique and difficult situations that can arise in my life and in my relationships while living with a chronic illness on a daily basis.

As I have progressed through my Sjogren's journey over the past several years, a lot of things have changed for me in terms of how I deal with the illness and just as importantly, how those around me deal with my illness. When a person first becomes ill, they are oftentimes fortunate enough to have a flock of people supporting them and cheering them on. The problem is, the illness does not go away. The months and years tick on and the initial rush and zeal to support the person diminishes, usually at a time when they need it the most. In most recent months, I have had the blessed opportunity to meet and develop relationships with other people who have either Sjogren's Syndrome, another autoimmune illness, or a completely different chronic illness. The common theme I hear is the difficulties in managing our illnesses on a long term basis and the effect that the illness has on our relationships. As I form these connections, read other blogs, and network, it has become more and more strikingly clear to me how different our lives are from our non-chronically ill peers and how this can set us apart in society.

I am discovering more and more lately that there are certain needs, expectations, and beliefs that I, and many people like me, have that are not being met or understood. I have some theories about why this is. I also have some suggestions on how a person can be a support to someone with a chronic illness. Some I will keep to myself in the interest of continuously trying to understand the other perspective of what it must be like for the people in my life and some I will share because I live in the belief that most people are well intentioned and as chronically ill folks, we don't always know how to speak up for ourselves and what we need. Therefore the people in our family, friend circle, workplace, and community sometimes don't know how to be a part of our lives when dealing with us and our chronic illness.

As human beings with a chronic illness......

*We do not want to be defined by our illness or whatever diagnosis we may have. We are very aware that this may appear to be the case sometimes as illness is a frequent topic of conversation and a very real issue that needs to be managed on a daily basis. But really, it is not any different than discussing what consumes a lot of people's time in general such as children, pets, hobbies, ailing parents, and jobs.

*We recognize that it is VERY difficult to be in any type of ongoing human relationship with a person that has a chronic illness. We know that and we spend a lot of time worrying about it. Plans get cancelled at the last minute and unpredictability is our new friend. We appreciate flexibility and spontaneity. Taking an unexpected ride to Walmart or Barnes and Noble? Call us. Even though there is a good chance we might not be able to go, the feeling that someone put forth the effort will stay with us, indefinitely.

*Time and energy are valuable to us. It is not helpful to question our decisions in regards to how or where we chose to spend our time. We know everyone has crazy, busy lives but oftentimes the one thing that makes the difference in whether we can socialize or not is if you can come to us. Our homes may be a mess, but the appreciation for the effort will be lasting.

*Please don't ever tell us we "look fine". It's a well meaning statement but it just adds to the frustration of trying to exist in a world that does not understand how we can look so normal on the outside and be in hell on the inside.. But feel free to compliment the latest haircut! Or the new pedicure...

*Many of us with a chronic illness are riddled with guilt about burdening others and we therefore do not always know how to ask for help. We do not want to be perceived as needy or overly demanding to those around us. Yes, it is our responsibility to let our loved ones and friends know when we are struggling more than usual, but we also need others to take some initiative. Don't think about it. Do it. Anything. I would be thrilled if a friend called me and said they were stopping by for a few minutes with a couple of magazines on their way to another destination. A quick smiling face can break up a very long day.

*Many of us have partners, spouses, children, parents, and friends who help take care of us when the going is rough, which could be on a daily basis. Please remember them. It may be helpful to keep in mind that not only do they have jobs, families, and other obligations, but they are also the main support person for the chronically ill person; which can be a whole other job in itself. Try not to assume that because a person with a chronic illness lives with someone else, that the person, or their caregiver, does not need support.

*Never underestimate the power of a phone! Or open up your laptop and send a message. Know what is going on. It's hard for us to hear statements like you don't want to "bother us" or "wake us up". We know you mean well, but we are smarter than you give us credit for. We turn off our ringers when we are resting! It is more important for us to know that people care.

*Be our friend. Or don't be our friend. That's why some people are just acquaintances and that is OK. It's not easy to have a friend with a chronic illness and it can be much more challenging than your average friendship. And don't forget about us when events and get togethers come up. It is easy to assume that someone who is frequently ill won't be able to attend something, but let us make that decision! We don't want friends just during the tough times. We want them all the time! If you do feel that you cannot commit to being an emotionally supportive and present friend, then do what is best for you and move on.

*A lot of us with chronic illnesses struggle with issues around sleep, pain, and side effects from medications. While the rest of the world is buzzing away on a daily basis, these issues are a setup for isolation and loneliness.  It can be a very rapid decline from coping well to depression and hopelessness. Never underestimate the power of humor, a hug, or a kind word.

I hope this is helpful.

It is often said that it take a village to raise a child.

True enough.

I also think that it takes a village to support a person with a chronic illness. Maybe that way of thinking is not fair as we all have our own unique challenges and obstacles in life. For me, my experiences with needing the help of others are due to the fact that I have a chronic illness. But it's not just about a village or community supporting those with chronic illnesses. It's about us supporting each other as human beings. Because at the end of the day, in my opinion, that is all that really matters.

Photos: Courtesy of Google Images

Sunday, January 22, 2012

The Road Less Traveled

“The truth is that our finest moments are most likely to occur when we are feeling deeply uncomfortable, unhappy, or unfulfilled. For it is only in such moments, propelled by our discomfort, that we are likely to step out of our ruts and start searching for different ways or truer answers.” ~ M. Scott Peck

I have had a lot of questions about how my new found eating plan has been going so I figured I would blog about it rather than updating my Facebook status several times more a day than I already do. I know, I am working on that. What can I say? It's winter, I have been housebound way more than usual, and even the dog gets sick of listening to me after a while!

So I have been going strong since the day after Christmas with eating healthier and getting back on my green smoothies. I wrote about my intention to further expand this in my previous blog entries: Patient, Heal Thyself and Nutritional Healing.  Last week I started the whole gluten-free, dairy-free, semi vegetarian, no soda, minimally processed foods, reduced sugar business. And yes, I am pretty much making it up as I go along since this is not a specific "diet" plan so to speak. Rather, it is a hodgepodge of what I currently think to be in my best interest health wise.

I will be frank. It has been difficult, very difficult. But not more difficult than my Sjogren's Syndrome related health issues over the past few months and especially over the past two weeks. I am glad that I started to detox from all the Christmas indulgences the day after the holiday. It gave my body a chance to adjust to being off caffeine (which I was off of until the holidays) and processed sugar. I truly believe that there are certain foods that I am addicted to and the big ones are sugar and fast food. I also have found it amazing that once I have gone through that detoxification process, I crave the bad stuff so much less. Past experience has taught me that once I have more than a treat or two in a week, all bets are off because my body seems to then want it more and more.

One of the biggest challenges has been that I am doing this all at a time when I am taking a dose of steroids (prednisone) that I have never had to take at this dose (50mg a day) for this long a duration. Prednisone is notorious for causing excessive hunger, weight gain, cravings and menstrual difficulties which can in turn produce hormonal changes that affect all of the previously stated issues!  But I am resolved to not let that be a barrier for me. In addition, if my nutrition changes help my autoimmune disorder, then hopefully the prednisone will someday soon be a thing of the past. I know I need to give the nutritional plan at least three or four months before I can make a decision about whether it is working for me or not.

Another huge challenge for me has been figuring out the whole gluten-free/dairy-free situation. It is not that difficult to figure out one or the other but the two combined gives me a run for my money. Gluten and the hidden protein of dairy, called casein, are in an unbelievable amount of foods and personal care products.Think about anything processed: condiments, sauces, bread, pasta, beer, drinks, salad dressings, baked goods, cold cuts, marinated meats, hot chocolate; foods in restaurants; I could go on and on! I am not sure how diligent I need to be with the gluten in the personal care products such as  lotion, makeup, shampoo, etc. but I am going to err on the side of caution. My thinking is that if I am putting myself through all this, get it right the first time. As luck would have it, a lot of the personal care products I use because of my Sjogren's are gluten-free anyways...thank god!

I have found many ways to make this whole process easier. The internet has been an invaluable tool as has my social network of friends and acquaintances who have trail blazed before me. I love the fact that I can type in "is Heinz ketchup gluten-free?" and get an immediate response; most of the time! Certain stores like Trader Joe's, which I have always loved anyways, do a huge part with training their employees in helping you out. I found out today that they even have a bulletin board with different allergy food lists so that you can take the list around the store in order to make life easier.

I have also learned two valuable things; I must cook at home most of the time in order to accomplish this great nutritional feat and I must speak up for myself without worrying what other people are going to think. At home I have complete control over what is in my kitchen and more importantly, what goes in my mouth. When out in public, especially at restaurants, I have to ask as many questions as I need to and be proactive about bringing my own food as needed. I have been blessed with a very supportive fiancee whom although I do not expect to do this exact plan with me, is more than willing to eat whatever I make. I have successfully divided up our cabinet in sections for foods that are allowable for me and then not allowable in order to make the process easier for both of us. As a matter of fact, as I am writing this, he is giving me a break from cooking and whipping up a pot of gluten-free, dairy-free, vegetarian chili for tomorrow and the next couple of days.

I so love this man.

I know restaurants and socializing will end up being my biggest struggle with this whole way of life but I think it will get easier with time. I don't want to avoid social situations just because I don't think I can participate. I had my first restaurant meal at Pizzeria Unos the other day with my mom after a very long day. We were both famished after my doctor's appointment and I had left my car in their parking lot so she could drive the rest of the way to Hartford. I had done a little online restaurant research and thought I might be able to get a decent, safe meal there. I was not disappointed. They had a separate gluten-free menu and the waitress was good at helping me figure out how to avoid the dairy. It was quite an enjoyable meal with my mom!

As I go through the next month or two of meeting with doctors and undergoing medical tests to try and sort some new things out in regards to the Sjogren's Syndrome, I know that I am doing everything in my power to hopefully help heal myself. I am taking one day at a time, one hour at a time even. I am discovering a host of new foods that not only did I not know existed, but that I actually enjoy. It is  exciting doing such a positive change for myself.

It makes me feel empowered.

It gives me some peace.

Photo Courtesy of Google Images

Thursday, January 19, 2012

Are You There God? It's Me, Christine

"People see God every day, they just don't recognize him." ~ Pearl Bailey

Remember that book? Are You There God? It's Me Margaret by Judy Blume was a pop culture sensation written in the 1970's. As a child of the seventies and eighties, it was a must have for any teenager's bookshelf. It is the story of a young girl's quest for a single religion during a time in her life where she is confronting so many coming of age issues. At one point during the book, Margaret becomes angry at God and stops talking to him after she is in the middle of a confrontation between her parents and her grandparents. However by the end of the story, we hear Margaret praying to God again as she thanks him for being there for her.

When I woke up this morning my first immediate thought was to wonder if God was there with me. I have to admit, it is not the first thought I usually have in the morning but it was powerful enough to send me to my laptop at seven in the morning so here I am; writing a blog entry that it not intended to answer a question or a dilemma. One that does not describe some great lesson that I have learned. But rather an entry that just asks and explores difficult questions.

I tend to shy away from a lot of religious or spiritual topics and writings on my blog or anywhere else, mostly because  my spirituality is such a personal topic for me. Over the years my faith has become stronger than it ever has; adversity tends to do that to a person. But I have come to realize recently that I am at a critical point in my faith journey. This became strikingly apparent to me during a conversation with my minister the other day. I explained to him that I am just ticked off at God lately. Well, I may have used other words at the time but I will try to be a little more mature when describing it here. I further went on to explain that I feel abandoned by God lately. When I go to church, I feel lifted up and supported by him (my minister) and the fellow members of my congregation, but I am having a really hard time locating God.

This realization on my part startled me for several reasons. First, the events going on in my life right now health wise are truly not the most difficult times I have experienced in recent years. They may be scary and frustrating but I have been through much worse at times; times where I was not surrounded by nearly the amount of love and support I have now. Second, during those times, I have never asked "why me?" or have thought that God has not been as close by as I would have liked. So it confuses me as to why I feel so inclined to question my faith at this point. Maybe it is as simple as I am just worn down. Maybe I am feeling sorry for myself. Or maybe it is because that during this particular time of struggle is when I have to search for my faith and my connection with God using a little more effort.

One of the things that I really like about my minister is his ability to handle situations like this without judgment or condemnation and once again, he rose to the occasion. He listened and then he asked me if I had told God this; about being ticked off at him. Um, no. Who does that? But as we continued to talk, I realized well, why not? I pray, which is essentially talking to God. Prayer does not need to always be about thanking God or asking him to help someone else. Sometimes it can just be a conversation. If I was ticked off at someone else in my life whom I have a meaningful relationship with, I would tell them how upset I was with them. And God and I, well, we have a relationship. Maybe prayer does not need to be all that complicated.

Maybe it is as easy as asking "Are You There God? It's Me Christine."

Photo Courtesy of Chuck Myers

Wednesday, January 18, 2012

Nutritional Healing

“Don't eat anything your great-grandmother wouldn't recognize as food.” ~ Michael Pollan


As I have been blogging about recently, the whole Sjogren's Syndrome/health situation has pretty much been on a steady decline for me lately. Along with many other avenues of trying to improve my situation, I am amping up my efforts at figuring out an appropriate and healing way for me to eat. I won't call it a diet and if I use the word "diet" anywhere by mistake, please call me on it!

Right after Christmas last month, I had decided to resume my green smoothie plan (I will probably blog about this in the future), get back on track with eliminating soda and fast food, and attempt to eliminate as much processed foods and refined sugar as possible. That in itself was enough of a challenge because up until 2011 my eating habits were horrible for most of my life. At one point I was one hundred pounds overweight. And as I spend more and more time reading about nutrition, I cannot help but wonder how much of my destructive eating habits have contributed to either the onset or severity of my autoimmune illness. Not that I am looking for a self induced guilt trip, but I don't think that I can honestly sit here and say there can be no possible way for it to be related. Maybe yes, maybe no. But I have to find out if I can now make it better. As I have continued to research information and read patient stories from my bed and couch, it has became clear to me that I really need to make this nutrition plan dairy free and gluten free as well.


I did not come to this decision easily. Especially because there is SO MUCH conflicting information out in the nutrition and health world about what is the best way to eat in order to maximize your wellness. Some information says go strictly vegetarian, some says eat Paleo like our ancestors did (which includes grains and meat), no this, no that. It is also challenging because even if a nutrition plan has certain restrictions such as being gluten free, it does not necessarily mean that is healthy. There are a wider choice of gluten free processed products on those supermarket shelves right now. You can make a snack of gluten free tortilla chips and top it with dairy free cheese and dip it in dairy free sour cream but I am guessing that that is not the type of food that will help fuel my body in a healthy manner on a regular basis.

It is all quite complex and enough to make you want to scream! However for my particular situation of trying to manage a chronic autoimmune illness, I feel that I have educated myself enough about which plan of eating will be the best choice for me.

Problem is though, I wasn't sure how to define my new eating habits. This wasn't important to me because I needed a name to it but rather because I thought it would help me define what the heck I was doing. Having a name would help me locate recipes and cookbooks that would better steer me in the right direction. I am knowledgeable enough to know that you can take a recipe and modify it into a certain formula that meets your dietary restrictions but honestly, I need it simpler than that right now. Between my physical challenges, doctor appointments, and managing my day to day existence, I have my hands full. I am willing to put the effort into figuring out what foods are appropriate in the supermarket and into cooking at home, but I need clearer guidelines as to how to proceed.

So I developed my own eating plan and that is the following: Gluten/dairy free; semi vegetarian; whole foods with minimal amounts of processed foods and refined sugars; no soda or fast food at all.

So what do you think? I know it seems quite ambitious but desperate times call for desperate measures. I cannot expect to make any type of life changing, possibly harmful, decisions about putting new toxic medications into my body without putting forth a 100% effort on my own behalf. I think there is a place for both and they are not mutually exclusive of each other.

And on that note, it is time to hit the kitchen....

Photos: Courtesy of Google Images

Monday, January 16, 2012

Patient, Heal Thyself

"It is during those quiet hours of desperation that truth and enlightenment are revealed to us." ~ Me

The past five days or so have been some of the longest I have physically struggled through in quite a while. You know that saying "It can't get worse?" Well, it can get worse so you may want to think twice before uttering that well-meaning phrase. When I thought that the Sjogren's joint pain I experienced back in 2008, before I was treated with any type of medication, was as bad as it could get, I didn't realize that it could be outdone by the stabbing, burning, and agonizing feeling of nerve pain. Well at least that is what it seems to be according to my primary care's physician assistant. I'll get back to you all on that when I can finally get in to see my rheumatologist this week.

So the hours of the holiday weekend ticked on. I tried not to panic when I struggled with my coordination and balance as I tried to get some errands done with Chuck. I prayed for relief and did everything within my resources to deal with it. My mental arsenal was (is) low because the medical plan has been to treat this issue at home over the weekend, until I can see my rheumatologist, with a high dose of steroids; a dose that I have only taken once or twice without being hospitalized. To be honest, I prefer to be at home, despite my anxiety over my stumbling into a wall here and there. The problem though is that as I have previously blogged about, the steroids wreak havoc on me. Especially when first starting the drug and especially at larger doses, unprovoked crying jags are frequent, I start to feel a little out of control, and sleep is nothing but a distant memory.

As I wrote about in my previous blog entry Giving Up and Finding Peace, recent health events have found me on a path of wanting to give up fighting and struggling with Sjogren's all the time so that instead I can work towards accepting where I am in my journey with this illness and become more effective in my coping and my ability to live a more peaceful existence.

While I was trying to cope hour after hour over the past few days, I used a variety of things to distract myself from focusing on the pain and side effects of the prednisone. One of those distracting techniques was spending time surfing the net, especially when television was lousy at three am. I did a lot of surfing about diet and nutrition these past few days.

Even before these past few difficult days, I have been spending time talking to other Sjogren's patients and doing research about the role of nutrition and diet in autoimmune disorders. As many of my readers know, I started making more of a conscious effort last spring to eat healthier and exercise when I was able to. It was about getting healthier and I thought that losing weight would accomplish that. I did lose some more weight in addition to what I had lost over the past two years but then as I got a little lazy and took more steroids, I gained a little back. What was important though was that I learned a lot about nutrition along the way and improved my cholesterol scores dramatically.

So during those wee hours of the morning, while surfing the internet and reading articles and patient stories, I had my moment of truth.

I was enlightened.

I realized that I have truly never accepted the notion of treating my illness with nutrition.


Because I didn't think that I could do it and I didn't want to let go of the multiple dependencies I think I probably have on certain types of foods like sugar, additives, dairy, and processed foods. I wasn't fully taking responsibility for my health. I was complaining on a regular basis about the failure of the medical system; a system that was not helping me get better. But yet, what about my responsibility as the caretaker of my body?

After all the reading I have done over the past week, it is absolutely ridiculous of me to not pursue drastically changing my diet in an attempt to improve my health. Yes, there are not tons and tons of factual scientific studies saying that eating a more plant based diet and eliminating gluten, dairy, additives, and processed foods will cure your autoimmune disorder, but the stories are there. People like me who feel better, have fewer flare-ups, and more energy eating in a more healthful way.

After all the new and recurrent Sjogren's health issues I have dealt with over the past six months, how can I NOT give this kind of eating a real chance? The challenge of eliminating gluten and most processed foods in addition to the dairy, soda, and high sugar foods I have already eliminated overwhelms me. I mean really, what is there left to eat? Ahh, veggies...and fruits...nuts and beans...gluten-free grains. The good stuff so they say. I don't expect it to be a miracle cure. But I do expect to gain something from putting some faith in myself and in what kinds of things I put into my body. And who knows, maybe the process will also help me attain a little peace along my journey....

Photos: Courtesy of Chuck Myers and Google Images

Saturday, January 14, 2012

Giving Up and Finding Peace

"Anything in life that we don't accept will simply make trouble for us until we make peace with it." ~ Shakti Gawain

My fiancee and I were watching a movie in bed last night, Not because we were having this big romantic lustful evening, but because our bed was the only place I could get remotely comfortable after a nightmarish week of autoimmune related health issues, including severe pain. After the movie finished, I turned to him and asked him if he ever just felt like giving up. The question came out of my mouth so fast that at that moment, I realized how strongly I felt about wanting to give up. I didn't mean giving up as in ending my life, but I meant giving up in the sense of not fighting so hard to try and be well. I wanted to give up all the doctor's appointment, medications, advocating for myself, all of it. Most importantly I wanted to give up trying to maintain this positive attitude of "life is great, I am so grateful" crap.

Because reality is, sometimes it is crap. I have always tried to adopt this attitude of "fake it till you make it" because I honestly do believe that it works. The power of positive thinking is a strong one and thoughts do dictate emotions. If I am feeling down and out, I act like everything is better than it is; not because I am in denial but because positivity perpetuates wellness. The problem is that sometimes it does not give you the opportunity to truly acknowledge that sometimes things just suck. You go along through a chronic health situation and all of a sudden, the wall of illness seems insurmontable; the odds too difficult to beat. I think that as patients, and as human beings, we need to stop and be true to ourselves in acknowledging the reality of a lousy situation.

But maybe it is not about beating the odds and maybe it is about finding new ways to go around and over the wall of illness rather than trying to get through it. It is becoming quite apparent to me that over the past six months or so, the course of my Sjogren's Syndrome has become more severe. Rather than being stable for a few weeks or months at a time, I am constantly dealing with one issue or symptom exacerbation after another. I cannot do everything I was capable of doing six or nine months ago. My ability to socialize on a regular basis or take any kind of trip has diminished significantly. Even the daily activities, such as housework and errands, that I could do more readily have been impacted.

So where has this left me?

It has left me really ticked off...and frustrated...and discouraged.

As this week has progressed and I have found out that my most recent pain and walking crisis may be due to Sjogren's related nerve damage, I have come to the realization that I am constantly attempting to go through the wall rather than around it or over it. My motivation in trying to get myself better is to try and physically be the person I was before I got sick so that I can go back to work as a nurse and do all the social and physically active things that I used to be able to do. The problem with this is that I have this illness that does not allow for that. I can sit here banging my head against the wall and say I am going to be strong and determined. I WILL overcome and beat this disease. But all this does is leave me working for something that may be impossible to attain while at the same time losing sight of what I DO have. And I have a lot.

And the worst part of all this is....

I have no peace.

The nerve pain has ravaged my body leaving me sleep deprived, cranky, and overwhelmed recently. The worry and stress over how poorly my body has been functioning and the implications of yet another system involved in my illness has eaten away at me.

I have no peace.

I am so busy trying to be strong and determined in an effort to defeat the Sjogren's beast that I have let it rob me of my peace. This in turn makes me quesion everything else about myself; my ability to follow through on social commitments, my ability to persist with my Sjogren's book project, my ability to be the kind of partner that my fiancee deserves.

So instead of trying to go through the wall and get back the body I once had, I think it is time to find a way around the wall and develop ways to effectively cope with the body I have now. Maybe this is what I meant by saying I wanted to give up. I want to stop fighting and resisting. Rather, I want to accept the reality of where I am and the implications of my diagnosis while at the same time, continue to learn and utilize different healing treatments to restore and maintain as much of my functioning as my body will allow. I want to attempt to find ways to cope so that my pain and other symptoms do not dictate where I am mentally or spiritually as a person

And if I can accomplish this maybe, just maybe,

I will have peace.

Photo Courtesy of Chuck Myers


Monday, January 9, 2012

The Power of Facebook

I have read a lot of articles lately about the hazards of Facebook. These articles have talked about how teens, and also adults, can bully each other through the use of this social media giant. The articles also mentioned how many people get so consumed by checking status updates, notifications, and playing games on Facebook that the other aspects of their lives suffer. Facebook has also been blamed for less face to face interactions between people which results in social isolation. I don't disagree with any of these claims as I have witnessed all of these pitfalls of Facebook. But I would like to present another view about Facebook that many people I know never get to experience.

When you have a chronic illness, social medias like Facebook can be your saving grace. Since I started battling Sjogren's Syndrome, Facebook has been an enormous wealth of information and support for me. To start with, there are a vast amount of pages and groups that discuss various topics, which is helpful when you are trying to access information about such a poorly understood illness like Sjogren's Syndrome. These pages and groups provide a diverse selection of information regarding subjects such as nutrition, alternative health, wellness, exercise, and positive inspiration.

One of the most significant of these Facebook pages and groups is one I follow on a daily basis called the Sjogren's Syndrome Foundation page. It is a place where patients, and others, can discuss different ways to manage symptoms and what treatments they find useful or not useful. It is a place where we can vent our frustrations to people who truly understand what we are going through. I have had the opportunity to receive some very good advice and tips from this page as well as the opportunity to help others; something that is so critical when you are out of work as a nurse and miss having the capability to give back to other people on a daily basis.

I have also had the chance to get and know some of the wonderful people on the Sjogren's Syndrome Facebook page on a more personal basis through e-mails and online conversations. They have become a valuable part of my journey through this illness. Because of them, I have learned about the power of sharing my story and of hearing other people's stories.

One of the stories that I have been blessed to start hearing lately is in part due to Facebook. A while back I sent a friend request to someone in my church. This person spent some time reading my blog, which I post on Facebook regularly. She realized that I had Sjogren's Syndrome. She also has a friend, who lives in our small town, that has Sjogren's as well. This friend and I have now had the opportunity to connect through e-mail messages. According to statistics, Sjogren's is not that uncommon as it affects four million people in this country. However the reality is that it is an illness that most people have never heard of and is very poorly understood, even amongst the medical community. Therefore it would seem amazing that two of us have found each other in this relatively small town. It is quite a blessing as well.

Another aspect of Facebook that I have found invaluable is the easy access it has given me to my friends and family, as well as to the world in general. It is very easy to become isolated when you are living by yourself, which I did for almost two years before moving in with my fiancee; or when are suddenly out of work. You never realize how much your work life provides you with social interaction until you find yourself jobless. Between managing my health, my home, and other day to day needs, I never find myself bored, but it can be challenging to keep connected with the world from your home when most of the rest of the world is at work.

Also during the course of my illness, I have had difficulties with my voice and breathing which has made communication on the phone not a viable option at times. Issues with mobility, pain, and fatigue oftentimes makes leaving the house impossible. Facebook provides me the opportunity to be a part of our daily world when my body does not want to. For me, Facebook has not caused social isolation as is so frequently stated in these articles I have mentioned; it has freed me from it.

So despite the fact that Facebook often drives me bonkers with all of its constant updates and changes, not to mention the ongoing privacy issues, I say "thank you" to Mark Zuckerberg for his ingenuity in the creation of this social media giant. Thank you for giving me, and so many others, the opportunity to support each other and enable us to be more informed and educated patients.

Photo: Courtesy of Google Images