Thoughts and Ramblings on Life, Love, and Health

Another Morning

2012-02-07T07:57:00.001-05:00

"When you arise in the morning, think of what a precious privilege it is to be alive-to breathe, to think, to enjoy, to love." ~ Marcus Aurelius

I wake up and it is another day. I stop to think of that fact and be grateful for it. That is important, very important. It is so easy to get lost and discouraged first thing when you wake up. I have slept maybe two hours. Maybe four. The nights can be long. But I am awake. And I can move. Maybe not always easily or without pain, but I can get myself out of bed. I lie there and think about the struggles ahead of me that day and then I stop to think about what I can offer that day to make it a better day, one with a purpose; for myself or for someone else.

I prioritize in my head what is necessary to do and what is optional. Most of it is optional, it has to be. If there is an appointment I have to be at, the day revolves around getting to that appointment. I get out of bed and take my medications. So many pills in their carefully laid out pill box.

Steroids.
Inhalers.
A yellow pill.
A lot of white ones.

It is helpful to be an organized person when it comes to the taking of the pills.

Next priority is drinking as much as possible. The dryness has woken me up throughout the night, despite the humming of the constant humidifier and fumbling with eye drops and mouth moisturizer several times in those wee hours. The concept of too much water does not exist in my mind. My body soaks it up eagerly like it has never seen it before. Now, a bathroom run for me. A bathroom run and fresh water for Molly. I am already having difficulty convincing my arms and legs to work in their proper fashion.

Back to bed to check e-mails and Facebook. I am looking for inspiration. Something that will make me laugh. A kind thought from someone. A status update about something good happening to someone; something to help replace the light and joy that the steroids have taken from my normally even keeled and sunny disposition. I take a cookbook or two back to bed with me to figure out what nourishing meals I can put in my body to help heal it. If the day is all mine and not one that is a slave to doctor's offices or hospitals, I try to figure out how much I can do and again, what the priorities are. The priority might be completing a load of laundry. It might be vacuuming. Whatever it is will have a price, a physical price. I used to feel accomplished when I could go and go for fifteen hours at a time. Now I am grateful if I can manage to get through thirty minutes of activity.

And so it goes. Getting myself showered and dressed used to take forty-five minutes with a good end result. Now it is a two hour production and the goal is a clean body and clean clothes. It's not as hard as last week though. That is a very good thing. I miss being able to do more physical activity. I miss being able to walk my dog and feel the power of my stride underneath my body. I will never take that for granted again. My wish is that no one else reading this ever does either. How much will I get back? Yet to be determined.

I am learning the art of being gentle with myself. I am more aware of the importance of caring for myself in the most basic of ways. The comfort of hot water on my body. The wholeness of fresh green vegetables entering my body. The smell of fresh air. The power of a comforting touch. Things which I never noticed when I was too busy running from one place to the next; from one task to the other.

This illness forces me to be more aware. Every hour, every minute is a reminder of all that is currently not working correctly in my body. Constant thirst. Constant eye irritation and difficulty getting my eyes to adjust. Weakness. A medication of some sort almost every hour. Arms that shake. Side effects from medications. Legs that don't move like they should. Pain. Food that gets stuck in my throat when I swallow. Exhaustion.

Frustration.

Anger.

Fear.

I will be more than this.
I am more than this.

Remember to smile.

Breathe.

Remember what is important.

Breathe.

Remember that another morning will come.

And with it, hope as well.

Photo: Courtesy of Google Images

Simply Stated

2012-02-06T08:54:00.000-05:00

"What lies behind us and what lies before us
Are tiny matters
Compared to what lies within us. " ~ Oliver Wendell Holmes

This is going to be a simple blog entry today.

Be strong.

Have faith.

Believe in true love.

It can conquer all.

Photos Courtesy of Chuck Myers and Godvine

Nutritional Healing Update

2012-01-31T19:15:00.008-05:00

“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.

Helping the Person With A Chronic Illness.

2012-01-25T15:56:00.104-05:00

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

The Road Less Traveled

2012-01-22T19:00:00.003-05:00

“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

Are You There God? It's Me, Christine

2012-01-19T08:15:00.000-05:00

"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

Nutritional Healing

2012-01-18T16:41:00.000-05:00

“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.

Yikes.

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

Patient, Heal Thyself

2012-01-16T20:00:00.014-05:00

"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.

Why?

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

Giving Up and Finding Peace

2012-01-14T15:34:00.001-05:00

"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

Photo

The Power of Facebook

2012-01-09T07:56:00.000-05:00

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

Going to the Chapel

2011-12-28T15:57:00.000-05:00

"I will never, ever get married again. EVER!" ~ Me

Those were the words I was uttering about two years ago. I wasn't just saying them in anger or frustration due to the fact that I had finally extricated myself from a very lousy nine year marriage. I meant them with every fiber of my being. I wasn't against falling in love again at some point in the future, but I was making a lot of effort to put my life back together so I could become the person that I wanted to be. My plans did not include joining myself with another person for the rest of my life again, especially when I could have a great life without a partner or husband; which by the way, I still believe can be done!

As is true for most things in this life, we never account for the unexpected as we go along on our journey. My unexpected was Chuck. This incredible, loving, gentle soul who literally just popped up in my life at a time I never expected and in a place that I certainly never expected to find the one true love of my life. And I don't use that phrase lightly. He is my one true love. The one I feel that God has meant for me to always be with. And I know without a doubt that I am his. It just took us longer than most to find each other.

I have known since the day that Chuck and I did something together just the two of us, walking Molly at the state school, that I did not want to spend a single day without him in my life. But what most people are not aware of is that our journey to this proposal has been a challenging one at times. Like every other couple, we face obstacles and one of those obstacles was one that we had to struggle through together before we decided on the commitment of marriage. We have both done this marriage thing before and I am a firm believer that all those tough questions have to be dealt with before two people get to the altar. It's a good feeling to now be able to sit back and look forward to this marriage without any reservation or doubt. It's an even better feeling to know that there is nothing we cannot get through.

So how did it happen? On Christmas Eve, at home, we continued our tradition (a very new tradition!) of exchanging one Christmas present. He opened the photography book I got him and then he handed me a small box. A jewelry box. But I still did not think it was an engagement ring. I figured it was a charm for my Pandora bracelet, a pair of earrings, or a regular ring. There was a variety of reasons for my naivety, including the fact that my mind was elsewhere and did not register the possibility that he was going to propose. We were in the midst of celebrating Christmas and we had a duet we were singing for church service that night. I was very distracted to say the least.

So I opened that small white box and there it was. This beautiful diamond ring, one of the most stunning things I have ever seen. As I was looking at it, Chuck got down on one knee and put the ring on my finger. A perfect fit. He never said a word. He didn't have to. Neither did I. Sometimes you don't need words....

As we told our family and friends the wonderful news, it still took me some time to absorb what had happened. I was in a state of shock and I think that some people interpreted that as meaning I was caught off guard because we had not discussed marriage. That wasn't it at all. We had discussed it. The shock was more about the fact that I wasn't expecting the ring at that moment, on that day; one of the most joyous days of the year.

Some of the shock this past weekend for me also had to do with coming to terms with how drastically my life has changed over the past few years. I sit back and think to myself: how did I get here? At what point did my life turn around so much that I am now capable of fully loving someone, fully receiving their love in return, and creating a life for myself that is fulfilling? How did I become so blessed?

It has been an emotional few days since the proposal. Seeing my brother cry, hearing the excitement in Chuck's mother's voice, and experiencing the pure joy of so many people who love us. For those people who have been by my side over the past five years during one crisis after another, the joy of this engagement has been an opportunity for them to celebrate a love that has been life altering for me, for both of us. I would say that this engagement is the beginning of a wonderful life together but truth be told, it is really a continuation of the wonderful life we already have...

Photos: Courtesy of Chuck Myers

2011 Holiday Reflection

2011-12-21T16:53:00.002-05:00

"The unexamined life is not worth living." ~ Socrates

As we all sit in the midst of the holiday season and the end of the year descends upon us, I like to sit back and think about what this year has brought for me both in regards to my blog and for me personally.

This time last year was dramatic and stressful for a variety of reasons. Two days before Christmas, one of my friends was laid to rest. Upon returning home from her funeral, I found my beloved dog suddenly having difficulty walking and crying out in pain every time she moved. This led to an urgent visit to my vet that afternoon and a subsequent visit to the veterinary emergency room the next day, which happened to be Christmas Eve day. Due to the horrendous incompetence of my dog’s medical providers, she ended up being paralyzed by the day after Christmas. This resulted in an emergency trip to MSPCA Angell in downtown Boston, during a blizzard, for an emergency evaluation and surgery.

I think back to that time and to be honest, the Christmas part is a blur to me. I was averaging about two hours of sleep a night that weekend and all I remember is bits and pieces of happiness dispersed amongst all my anxiety and worry. I remember singing at Christmas Eve service, opening presents with my boyfriend at my apartment Christmas night, and being on the phone with the veterinary emergency room, yet again, at 1am on Christmas morning. I remember my dog suffering in pain. I remember wanting more than anything in the world to make her comfortable.

My dog, Molly, survived the surgery for a ruptured herniated disk. I survived making the decision to not put my ten year old dog to sleep by instead electing to go ahead with the surgery; despite the fact that I was told she would probably never regain use of her bowel and bladder again. My beloved boyfriend, Chuck, survived us both. Molly went through about eight weeks of recovery during one on the worst winters I have ever lived through. Sometimes the biggest challenge of my day was getting a path shoveled down the handicap ramp Chuck built her to a bathroom area in my backyard. Her recovery was truly a labor of love. A labor of love that has now resulted in a fully functional, continent, healthy, and very happy dog.

Chuck and I had made a decision, prior to Molly getting sick, for me to move into his home last January and despite all the other drama; we proceeded with our plans for the move. Thanks to some wonderful friends, we were able to get Molly and I into our new home, despite the two plus feet of snow that had already landed on the ground last winter.

We settled into our new lives. We worked out how I was going to be less compulsive about neatness and how he was going to make an effort to be neater. We figured out how to use each of our strengths to create a harmonious existence. You would think that after him living without an adult female partner in the home for thirteen plus years and me, until I met him, enjoying living alone, that we would be a recipe for disaster. But like everything else we have worked on so hard as partners, it all came together. Sometimes in the end, love does prevail.

As 2010 marched on, many events took place; our first vacation together, deep conversations about the future, my fortieth birthday, home improvement projects, and hosting our first gatherings as a couple in our newly reconfigured sanctuary. The year also was a big step in my journey battling what at that point was an unknown and undiagnosed autoimmune disorder. In August, I was finally officially diagnosed with Sjogren’s Syndrome. So many unknown questions now had answers.

This past year has also been the year that I have truly become a writer. In early spring, I began to work on further developing this blog. I had previously been intimidated by the challenge of using the blog template and really didn’t know what I was doing in regards to using the different functions of the blog. I researched and I learned. I bought the rights to my blog’s domain and made it into my own. Something that I could be proud of.

In addition to the working on the blog, I began to write feverishly. Barriers to my writing such as the fear of not being good enough or talented enough were slowly broken down. I began to read writing magazines, attend conferences, and network with other writers and authors. I queried magazines and other literary sources with my work. I had the wonderful opportunity to be a guest blogger for several websites. I truly began to further develop my craft.

Throughout my writing journey with my blog over this past year, a very remarkable event took place.

All of you.

Back in March, there were about nine people following my blog, which had been in existence for almost a year at that point. Today there are ninety-eight.

Ninety-eight people who have taken the time to read what I have written. Some have read my words just once or twice. Most others have found their way here either periodically or regularly.

As a writer, I enjoy receiving my reader’s comments in response to whatever I may have written about. I have had the opportunity to meet people from all over the country and even the world because of this blog. People who under any other circumstance, I may not have ever met or interacted with. People with similar struggles and triumphs; with different ones as well. All still people nonetheless. Readers have been forthright with me via their comments or by e-mail and Facebook about how my writing has affected them in some way and for that, I would like to thank you. You have no idea how much it means to me to know that my words have made you laugh or cry; think or learn. That I have made a difference in this world.

I wish all of you a most wonderful holiday this year filled with an overflowing abundance of happiness, love, and of course, good health. May you be able to embrace the joy of the season and I hope to continue to be present with you all in 2012 through my words and thoughts.

God Bless.

Music and Love

2011-12-19T17:45:00.000-05:00

"The total person sings not just the vocal chords." ~ Esther Broner

"Singing is a way of escaping. It's another world. I'm no longer on earth." ~ Edith Piaf

Every year my church has a Christmas Cantata. Last year, our Cantata was going to be my first concert as I had just joined the choir about six weeks prior to the performance. A good friend of mine, Kathy, was a long standing member of the choir at that time and had encouraged me, despite many physical obstacles, to join the choir as she knew my passion for singing. Tragically, my dear friend died suddenly on December 17th, two days before our performance. It was a very difficult time to say the least. The cantata was a blur. My clearest memory of the event that day was the effort I, and the rest of my choir members, had to make to keep from crying while we were singing that morning.

One year has passed since that terrible week and another Christmas Cantata has arrived. I was looking forward to making new choir memories that were not steeped in so much sadness during this holiday season. This year, my boyfriend, Chuck, and I had the opportunity to sing a duet of the popular Christmas song Mary, Did You Know? I had never sung it before and I knew it might be a challenge because I had never even heard it sung by someone else.

Chuck was going to play the guitar as well. He found the chords online and we slowly started to put together a melody and harmony that we thought would work. The process became very interesting to me as the days and weeks went along. Anyone who knows me is aware that I have struggled to overcome a lot of my Type A tendencies in an effort to lead a more relaxed and fulfilling existence. When we were first putting the song together, I would drive Chuck crazy with all my questions about if we should do it more like this person or that person; or if we should do it more like how they do it on this YouTube video or that one.

He was so patient with me. What I learned from him as we went along was that as long as we both felt comfortable, liked the way it sounded, and FELT the music, nothing else really mattered. All of a sudden there were no rules, no guidelines. We didn't have to do the song as others had done it before us. We could make it our own.

About ten days before the Cantata, I had a very sudden and severe respiratory flare-up from the autoimmune disease I have. It was the worse I had experienced in a year and a half and it was one that would typically land me in the emergency room or worse yet, in the hospital. I really did not think I would be able to be well enough to sing at all on Cantata day. And I was upset, really upset. With the exception of a four week respite from my symptoms following a steroid injection, I was dealing with symptom flare-ups constantly and I was sick of it. It seemed like almost every time I tried to accomplish something that was important to me, I also had to contend with a medical crisis. The timing of this particular flare-up was horrendous because it was going to interfere with something I had poured my heart into. I tried to sit back and take the attitude of "it is what it is" but that only lasted about a day or so. I needed to get myself well enough to sing. I didn't want to cheat Chuck or myself out of this experience together. I didn't want to let my fellow choir members down.

There is something to be said for all the learning I have done to regards to managing this autoimmune illness. I talked to my pulmonologist and my acupuncturist and decided to step up my acupuncture treatments a bit and more importantly, go back to taking Chinese herbs. I called my speech therapist from a year and a half ago and she talked me through the techniques we had gone over at my previous appointments. I restarted the speech therapy at home with a vengeance. I doubled my effort to relieve some of the dryness caused by the Sjogren's which I knew was making the situation worse.

Forty-eight hours and I was better, much better and as the days went by, my breathing not only improved, but my voice got stronger. I was diligent about protecting my vocal cords because I knew I was not yet 100%.

I should know better than to get too comfortable with my body when I do not have my illness under control. Two days before the Cantata and I noticed it was painful to eat. I looked in my mouth and saw that my inside right cheek was ridiculously swollen. From looking at it, it appeared I was having another flare-up of my parotid gland with a likely infection. I was also having terrible headaches and sinus pain with nasal discharge that also looked infected, which of course was affecting my voice.

After hours of trying to get a hold of my rheumatologist on a Saturday (I found out today that they don't have weekend/night coverage), I just said to hell with it. I knew I had an infection and probably inflammation as I had been through this once before. I started myself on steroids and antibiotics which I luckily had extra supplies of at home.

Twenty-four hours later, Chuck and I sang that song.
And we sang it well.

Shocking considering I have, guess now I can say "had", terrible stage fright. I had never sung with just one other person before. Usually I sing with a whole group of people and even that sometimes leaves me a little rattled. When Chuck and I ran through the song at choir rehearsal several days before the performance, I was responsible for holding our music because he was playing the guitar. My hands shook so bad when we rehearsed that we decided to use a music stand instead because otherwise he couldn't follow the page with the words shaking all over!

That day that we sang that song though, I didn't shake at all. Because this time, I looked at him while we were singing. I focused on him and the beautiful music that was coming from his heart. In those two and a half minutes, it was just him and I; not in a church with a LOT of people, but in the safe refuge that we call home.

There was something incredibly special about singing that song with Chuck. I know this sounds corny, but it truly has brought us closer together. We each have had more on our plates than usual lately which has resulted in a lot of stress and sleepless nights. Although I think we do well with supporting each other, practicing this song together night after night was a different way of supporting each other's wellbeing and sanity. We had a common goal that didn't involve job stress, health stress, financial issues, or relationship issues.

It was just us and the music.

It was our way of honoring Kathy.
It was our way to honor the upcoming birth of Jesus.
It was our way to give to the loving church community that we are involved with.
It was our way to give to each other...

Not just music, but love as well.

Mary, Did You Know?
http://www.youtube.com/watch?v=AHHwlmf7SeE&feature=g-upl&context=G2a64dc9AUAAAAAAAAAA

Photo Courtesy of Google Images

To My Friend ~ One Year Later

2011-12-11T18:22:00.003-05:00

You can read To My Friend written on December 17, 2010 here: http://www.christinemolloy.com/2010/12/to-my-friend.html

"Death ends a life, not a relationship." ~ Robert Benchley

It has been almost one year since you left us my friend. I have been thinking about you a lot lately, especially as we get ready for another Christmas Cantata. As December approached this year, I found it very difficult to think about the events that happened at this time last year. It felt like I was mourning you all over again, although to a lesser degree. But that has changed over the past week. I gave myself the time and the space I needed to grieve again and now I am remembering the good times. When I think of asparagus and copper pennies, I cannot help but smile. As next weekend approaches, I just want to remember you with smiles and with laughter. I think that is how you would want it.

Mary sits in your choir seat now. It seemed like the right thing to do after your memorial service...the healthy thing to do. Sometimes when I look at that chair, I remember how your choir robe was gently laid over it with the photo that Chuck took; which was how we had it for the Cantata last year. I try to sit next to or as close as I can to Mary, as much as possible. I know it sounds strange but somehow sitting in that seat next to where you used to sit makes me feel closer to you.

You would be so happy with the choir. Most of us that joined with you, Alex, Tom, and Meaghan for the Christmas Cantata last year are still singing together a year later. Many of us never intended for our choir commitment to extend past the Cantata but in true Kathy form, you brought us all together and we couldn't break that circle apart. Plus your gentle persuasion on Carla paid off. She was not only our choir director for six months while Dan was away, but she sings with us now that Dan is back. Thank you for bringing her talent and her special friendship to our church. She has been such a blessing.

For the longest time, it was so difficult for me to go over to the house after you left us. It didn't seem right that you weren't there. I would cry all the way home the first few times I was there but gradually, it got easier. Without even intending to I think, Harry made it easier because he was so open about your passing and about how things felt different. It helps to be able to talk about it. Mary and I went to the house last weekend and helped Harry put the Christmas tree up. I felt like in a small way, we were honoring you by doing that. Instead of mourning you, we were celebrating you; especially with all of those purple Christmas decorations! It helped me be more at peace. I hope it did for your family as well.

You were taken from us way too soon at too young an age.Your death has given me pause about what is truly important in life. I try to remember that when I am feeling beaten down by life or when I am facing obstacles that seem too difficult. I remind myself that in a blink of an eye, it can all be taken away. Not only my life, but the lives of those around me. So I try to be more patient, forgiving, and tolerant. I remember to cherish my days and not squander them.

I still struggle once in a while with the singing when my health problems are flaring up. It happened again very recently, but you were with me. I remember your words from last year, clearly in my mind, like it was yesterday. You encouraged me to work hard and beat the odds to be able to sing. And when I didn't think I was good enough, you believed in me because you knew that like you, the music was in my heart.

Thank you for your faith in me.

Thank you for your friendship.

Thank you for your love.

You are always in our hearts.

Not All Rainbows and Puppy Dogs...

2011-12-06T10:54:00.000-05:00

As I laid in my bed last night wide awake at 3am with a raging headache and painful, dry eyes that burned like hell, I realized something. One single truth that although I was not oblivious to before, all of a sudden hit me like the freight train that sometimes runs through my backyard in the middle of the night.

The truth is this:

This illness will affect me the rest of my life. I cannot escape it.

That, my friends, is a very unsettling and tragic thought at the moment.

And I am tired of it. I go through phases like this when I get discouraged and I know I will see it differently at some point; maybe as soon as tomorrow. But for this moment, it is just hard. My health has been very unpredictable recently and has been that way since about May. After receiving a steroid injection last month, I had a good run for about three weeks and then the breathing issues started again. Issues that I have not experienced this significantly in about a year and a half. Over this past weekend, they seemed to be improving but then I realized over the past few days that they improved because I was in bed and doing nothing for two days.

After spending some time in Boston Saturday and then trying to walk my dog yesterday, I realized that even though I am managing the breathing issues better than a year and a half ago, they are not going away. Of course I have not started the round of steroids that was suggested to me because I thought I could get better on my own. And I hate the steroids.

My eyes have been getting worse in terms of the dryness which is making computer work more difficult, especially since I am doing a lot more writing and spending more time on the computer. If you have healthy eyes, appreciate them. It's a constant state of discomfort.

So back to my truth, the one about being sick the rest of my life. I guess I am scared because it feels to me that the Sjogren's business has been on a steady decline for months now. Sometimes it doesn't appear that way to other people because I have gotten so adept at managing my symptoms and looking "well". I cannot manage my life without medication and quite a few of them at that. I did try. I tried really hard. I still use acupuncture and other alternative/holistic approaches to manage my illness but the fact is, it's not enough. Nothing is enough.

See, I don't want to be the sick one anymore. I don't want to be dealing with a new or recurring symptom all the time. I want to be well enough today to do what I want instead of sitting in my house struggling to gather enough energy to bring up the two loads of laundry sitting down in the laundry room waiting to be put away.

It is difficult because most of the time, I stay positive. I have good days. I have good weeks. I know there are people less fortunate myself. I also know that I have a blessed life. I love the people that surround me every day with love and positive energy but they are often so intent on keeping me lifted up that they don't see that sometimes I just need permission to sink....and reflect...and acknowledge...and accept. I need a space to acknowledge that it's not all OK. That having a debilitating, chronic autoimmune illness which never leaves my side is worth crying over...and stomping my feet over...and writing about.....

Would You Like Some Shepherd's Pie?

2011-12-05T09:52:00.001-05:00

“A hungry man is not a free man.” ~ Adlai E. Stevenson

"A hungry man can't see right or wrong. He just sees food." ~ Pearl S. Buck

What would it take for you to go to a soup kitchen for a meal? What would it take for you to bring your two small children to a soup kitchen? Would you feel defeated? Worthless? Relieved?

The Loaves and Fishes community kitchen, headed by the Open Pantry Community Services in Springfield Massachusetts, is a program that provides meals to people who are poor or homeless in the Greater Springfield area. It serves lunch and dinner 365 days a year to whomever walks through their doors. No questions asked. Many people who seek out a meal there are homeless or very close to becoming homeless. They are children, adults, and elderly. They are people who may be disabled, mentally ill or struggle with an addiction. They are human beings.

Every few months I go to the Loaves and Fishes community kitchen with members of my church to serve a meal that is prepared beforehand by members of the church, Belchertown United Church of Christ. Members sign up to prepare salad, brownies, and large trays of shepherd pie. Then a group of seven or eight volunteers brings the food to Springfield, warms and prepares the meal and then serves it.

It is quite an organized operation at Loaves and Fishes. It has to be. They serve approximately two hundred meals a day between lunch and dinner. This past month when we went, we began serving dinner promptly at 5pm and by 5:30pm, over 150 people had been fed and the large room had been cleaned up. The process is fast, efficient, and effective. A true testimony to the power of teamwork.

The Loaves and Fishes community kitchen is not what many would consider a pretty place. This is not a judgment, just a fact. It is located in the basement of a church in downtown Springfield, in a neighborhood while although not Springfield's worse neighborhood, definitely one that gives you pause when you go there. You take safety measures that you would not take if you were working in one of the surrounding suburbs. Crime rates are higher in this neighborhood and because of that, you don't bring your pocketbook in with you. Because there is a high rate of patrons who are drug users or have a mental illness, there is a sense of unpredictability surrounding the large church. A sense of quiet desperation.

So why do I go? Because once I walk through the side doors of that church and into the basement carrying one of those heavy trays of shepherd's pie, I know that I have brought a little piece of hope with me. That tray of shepherd's pie that I slide into the industrial size oven, which was made by someone in my church family, symbolizes the good that still exists in this world. For that hour and a half it takes us to prep, serve, and clean up the dinner, it is not about my own medical, personal or financial worries.

It is about giving. Actively giving.

Giving to people who are less fortunate than myself.
Giving to people who have to swallow their pride and admit that they need help.
Giving to people who are either down or the luck or have just made some poor decisions along their journey.

Every time I go to Loaves and Fishes, there is usually a person or group of people who catches my eye. A person or group of people that makes me wonder about how they got to this place in their lives. Oftentimes I wonder about what makes them different from me and how it is that they ended up there and I did not. This past time, it was a family of four that included a mom, dad and two children who appeared to be under the age of five. They spoke to each other affectionately; you could feel the love and nurturing that existed between the parents and the two small children. But that was accompanied by the look of despair and anxiety etched into their faces.

It is a very powerful experience to feed people who are hungry and for whatever reasons, cannot provide themselves or their families with a hot meal. The emotions we witness from those whom we serve dinner to can be overwhelming. The child's eyes that light up when they see that you are handing them a brownie for dessert. The look of delight on a man's face when he realizes and acknowledges that he is having shepherd's pie for dinner. The excitement on a woman's face when she hears that there are leftovers and therefore second helpings.

And there is gratitude...

"Thank you ma'am."

"We love shepherd's pie!"

"What a wonderful meal."

"We love Belchertown."

"God Bless you all."

I have described my experiences at Loaves and Fishes to several different people over the past few years. Oftentimes it sparks a political conversation about hunger in America and how we, as a country, should address that issue. Why does such a wealthy country, who gives so much financially to other countries, have adults and children going hungry day after day? Where are our priorities? During one particular conversation, I was told that my desire to feed the hungry at organizations like Loaves and Fishes makes me a "bleeding-heart liberal".

My response?

"No, it just makes me human."

Photos: Courtesy of Google Images

My Writing Voice....My Permanent Voice....

2011-12-01T19:00:00.001-05:00

I attended a writing conference this past October and happened to have the good fortune of sitting next to a woman who belongs to a writing group in Amherst, MA. I expressed an interest in learning more about this group and she invited me to a meeting which I am sitting at as I write this.

The group is a different format than the writing group I attend in Connecticut. In this Amherst group, we initially have a five minute writing session where we write whatever we want. This is followed by a brief reading and commenting of our work. Then there are two more thirty minute writing periods that morning, also followed by reading and commenting. I thoroughly enjoyed my experience today and the following essay is what came out of my writing this morning. It was interesting for me to see that despite the fact that I didn't have a topic in mind to write about when the group started, the ideas and words just flowed...

I sit in a room with four strangers. I feel excitement and some apprehension, although not as much as I anticipated. I used to not able to do things like this, enter a room of people I don’t know and make myself at home. I guess that is what happens sometimes as you get older; you become more comfortable in your own skin. You put yourself out there for the world to see and remind yourself that it doesn’t matter what other people think about you. For me today, it’s all about the writing.

Finding my voice.
Finding my muse.
Finding myself.

When it comes down to it that is what writing is all about for me, that finding of my voice, my muse, and ultimately myself. I want other people to read what I have written. I want my writing to give them pleasure and inspiration. However at the end of the day, the most important thing to me is that I have been true to my craft and to myself.

I sometimes become lost in my journey of writing and I have to remind myself that it is a process. A process of learning and developing more proficient writing skills. More importantly, a process of listening for the words and stories that are just begging to be written down. I don’t know if this is what it is like for other writers but I have found that when there is a story in my mind and heart to be told, whether it is a personal essay or a short story, it oftentimes unfolds in a very predictable manner.

The idea of what I want to write enters my brain sometimes insidiously and other times like a lightning bolt. I toss it around in my head for a few minutes or maybe even a few hours to see if the idea develops at all. If it does, it is at that moment that it has to be documented somewhere before it gets consumed by all the other important and non-important pieces of information floating around in my brain. It doesn’t matter where it gets written down, maybe on my laptop, a notepad, a post it, or the worn out grocery receipt sitting at the bottom of my purse. The important part is that it gets written down.

As I write my essay, my story, or my poem, I feel physically different. It feels like adrenaline is rushing through my body. It’s like I have the ideas all bottled up in my mind and my brain is scrambling to put the right words and sentences together so that coherent thoughts form onto the page. As the paragraphs form, I become more confident in what I am developing. Once I finish the first draft, a rush of release fills my body. I did it. I got all the words down on the page that I needed to. My voice is now permanent.

Photo: Courtesy of Google Images

Hurting Each Other

2011-11-28T14:08:00.000-05:00

“To hurt is as human as to breathe.” ~ J.K. Rowling

As the past few years have been such a significant period of personal growth and transition for me, I have used that period of time to work on figuring out how to be wiser in choosing the kind of people I want surrounding me. I have made some very good decisions in my adult life in terms of friendships and romantic relationships, but I have also made some poor decisions as well. Due to a variety of reasons, I have previously aligned myself with some people whom one might consider toxic. I have blogged about it in the past which if you are so inclined, you can read "Warning-Toxic!" here:

http://www.christinemolloy.com/2011/06/warning-toxic.html

But here's the thing. I am not always so well prepared when it comes to dealing with hurt that has been inflicted on me by people who I don't expect it to come from or in places that I thought were safe havens for me. Or from those people who I love and know love me. I do want to note that I am not talking about being hurt by those mean spirited and abusive people that live in this world; I think there are some differences with those situations that warrant a different discussion.

In general, I try to go with the flow, accept that we all do stupid things sometimes (myself included!) and move on. This past week though saw a few things happen in my life that have left me feeling wounded and well, hurt. More than just your run of the mill insensitive remark type of thing. The type of hurt that leaves a mark on your soul, maybe a small one or maybe large one, but one that nevertheless will take some time to heal.

As with a lot of other instances in life, there is always an opportunity to grow when you feel wounded, whether it be by someone you love or a new acquaintance. There are also lessons to learn when we find out that we have hurt someone else, but that is a story for another time. The biggest opportunity for me to grow this past week was evidenced in how I chose to deal with the hurt. My instinct in the past has been to lash out back at the person or to use a defense mechanism such as sarcasm or absolute silence; anything that I thought would help me feel less vulnerable. When another person hurts us, that is what happens; we have exposed our vulnerability and someone has found that vulnerable spot.

This week I found the ability to deal with some of the hurt in a way that I felt was true to the kind of person I am and the kind of person I keep striving to be. That is a person who comes from a place of love and not bitterness or resentment. A person who is stronger than all the negative feelings that have resulted from someone else's thoughtless behavior. Because when it comes down to it, when we feel wounded by someone, two characteristics apply to the event. As the person who feels hurt, it is our perception of the event that dictates the severity of the injury so to speak or even whether is qualifies as an injury at all. An example of this is one of the events that happened to me this past week. If it had happened to someone else (let's call him Jack) instead of me, Jack may have felt just a little annoyed or maybe even angry, rather than hurt like I did. Jack may not even have thought much about it at all. However because of other factors and background information that the offender most likely knew nothing about, the event was much more significant for me. It doesn't make what they did right, but it does change the dynamic of the situation.

The second and more important thing that happens comes from the person inflicting the pain. I have come to understand recently that most times when a person offends or hurts us; it really has nothing to do with us. It is about them. As human beings, we like to think that every action that affects us in this world is about us personally, but typically that is not the case. When another person does something without thinking about the consequences of their actions, it is not about OUR worth. Rather it is most likely about a variety of factors that the person affected has no control over. It may be because the person we feel has hurt us just doesn't have the skills necessary to step outside of themselves. Maybe it is because they have always done things a certain way and don't know any differently. Or maybe whatever else is going on in their lives has consumed them to the point where they are just trying to get through the day. These are not excuses, but they are valid examples to point out that when someone hurts us, it's not usually about you or me. It's about them.

Although I have found my own ways to deal with the hurt I have experienced over this past week, I still struggle with how to move on. It's not because I can't forgive but rather because I can't forget and let it all go. Little bit of a character flaw maybe on my part. Despite surrounding myself with people who at their core are "good" people, the reality is that despite our best intentions, we will hurt each other from time to time. I guess I just have to try and trust in the process of moving past the hurts and remember that at the end of the day, we are all mere human beings and completely imperfect.

Photos: Courtesy of Google Images

Pass the Turkey Please!

2011-11-22T20:07:00.000-05:00

"Thanksgiving Day is a jewel, to set in the hearts of honest men; but be careful that you do not take the day, and leave out the gratitude." ~ E.P. Powell

Here we go! The holidays have descended upon us. Here in New England many of us have been so busy recovering from the great October Nor'easter that we didn't realize all of a sudden, it was Thanksgiving week.

Life gets tricky this time of year. For about six weeks, we are thrown into social situations with family that we may or may not get along with. Typical family drama that we deal with all the other days of the year can intensify. New relationships and families may have been formed in the previous year which means that we have to reexamine our previous traditions and how we choose to spend our precious holiday time. Sometimes we are so busy running from one holiday event to another that we can't wait to get back to our normal routine because our stress levels are so high.

I enjoy the holidays now which has not always been the case. I loved this time of year when I was a child but once I entered my twenties and thirties, I found myself getting wrapped up in the task aspect of the holidays. The priority became getting everything on my list done; the shopping, the cooking, putting up the tree. I became so focused on the getting things done that I wasn't savoring the activities themselves. I lost sight of what was really important. Sound familiar? Over the past two years or so, I have finally found some sort of balance between doing what I HAVE to do and and genuinely celebrating the spirit of the season. During the holiday season, I make sure to stop and remember what it is truly about for me and for Thanksgiving that means gratitude and family. At Christmas it means Jesus and love. Oh yeah, and food too...for both! I will admit, it is still a hard balance at times, but at least now I am more aware.

So what can we do to survive from Thanksgiving to New Year's Day? Well, I have found that planning is helpful so that not everything is left to the last minute. While I am plannin, I carefully look at my schedule to make sure I don't book too many events in one week. I make sure to avoid feeling like I am running a marathon!

I prioritize. I used to put so much pressure on myself to do all the proper things for Christmas like baking, decorating, fulfilling church obligations, sending out Christmas cards, etc. OK seriously, that is ridiculous. I was so burnt out by Christmas Eve that I was almost too tired to enjoy the evening. Now I take into account what else is going on in my life at the moment, how much time I have, my health status and the like when I am deciding what to do. I have decided that for example in regards to Christmas, my priorities are church activities, putting up a tree, shopping for Christmas presents, and spending time with my family. If I don't have the time and energy to bake or do Christmas cards, it doesn't get done. I have yet to get a complaint the last two years from anyone about not getting a Christmas card so....

I make a huge effort during the holiday season to make sure I have time for myself to reflect on the season and what it means to me. I participate in at least one or two volunteer activities that do something to help people less fortunate or people who may be having difficulties during the holidays that particular year. In doing that, it grounds me and fills my spirit in a way that writing out Christmas cards just doesn't do for me. Isn't that what the holidays are all about?

My hope for all my readers this Thanksgiving is that as you pass the turkey this year, you take a moment to not only give thanks, but to think about what types of steps you want to take in order to get through this upcoming holiday season with some mindfulness and some peace.

Photo: Courtesy of Google Images

This Day

2011-11-16T14:26:00.012-05:00

"For the past 33 years, I have looked in the mirror every morning and asked myself: 'If today were the last day of my life, would I want to do what I am about to do today?' And whenever the answer has been 'No' for too many days in a row, I know I need to change something". ~ Steve Jobs

This day will pass fleetingly and we will never get it back.

This day provides us with a full twenty-four hours which is more than enough time to start changing our lives.

This day is one in which we can say something nice to ourselves instead of beating ourselves up over what we did wrong or over who we wished we looked like.

This day symbolizes our strength in having weathered storms in our lives.

This day could be the one in which we forgive.

This day affords us the opportunity to laugh.

This day could be the one in which by changing one thing in our lifestyle, we take a small step in improving our health.

This day provides a chance to do something kind for another person, just because we can.

This day saw the sun rise and will also see it set.

This day allows us to appreciate all in nature that God has put before us.

This day presents us hope.

This day is a gift from God. Let us treat it as such.

In remembrance of Gertrude "Gertie" Rouillard who passed away on November 16, 2003. She had a gentle spirit and she taught us the value of love, family, and the power of looking at life with optimism and joy. Your lessons live on Memere.

Photos courtesy of Chuck Myers/Christine Molloy

Doctor, I Trust You

2011-11-13T17:00:00.001-05:00

"I observe the physician with the same diligence as the disease." ~ John Donne

Trust.

Doctors.

For the most part, it is difficult for me use those two words in the same sentence, unless the prefix "mis" is used in front of trust. In some ways, my mistrust of doctors is surprising because in general, I am a very trusting person. However like any other relationship, the patient-doctor relationship is vulnerable and when that trust is broken over and over again, it is then difficult to enter into another patient-doctor relationship with the confidence and trust that is needed to build a cohesive team.

I have very good reasons not to trust doctors. To start with, I am a registered nurse. I have spent a lot of time working in a teaching hospital and have seen firsthand the potential and actual mistakes that can be made when treating a patient. I have witnessed more times than I can count, novice and experienced doctors alike make grievous mistakes that sometimes have been thwarted by nurses and other medical professionals such as pharmacists. Sometimes, those mistakes do reach the patient.

However my bigger trust issues with physicians is due to my years of experience in being a patient. My first bad experience came when I was twenty-four years old and had Stage Two Hodgkin's Lymphoma, which was misdiagnosed for over six months because two different doctors did not think it was probable for someone my age to have cancer. Then I was told several years later that heart palpitations I had been experiencing were due to anxiety; only to find out four years later that I had an actual conduction problem in my heart which was causing my heart to not function properly (AV Nodal Reentry Tachycardia). The third incident occurred over the past several years when I was battling a host of physical symptoms and was told by doctor after doctor that they could not find anything wrong with me. I was convinced I had an autoimmune disorder. Several doctors were convinced I was crazy. That myth was dispelled when a lip biopsy came back conclusive for an autoimmune disorder called Sjogren's Syndrome.

It would be easy to sit back after all of this and say "to hell with them" but the reality is, I need doctors. I also need to be able to trust the people who have my life in their hands. Easier said than done. So how do we do it? How do we build a trusting relationship with our physicians?

Like any type of relationship work we do in our lives, we have to start with ourselves. We have to look at what we do on our end that acts as a barrier between us and our doctor. For me, it was a matter of checking myself at the door. Because no matter who the doctor was or what the problem was, I always thought I was right. Of course I didn't always let my doctor know this. Sometimes I would verbally disagree with a diagnosis or a treatment idea, but then other times I would go along with what they said, yet never really trusting that they had the right answer. The problem was, I was confusing thinking I was right in terms of medical knowledge with being right in terms of listening to my own body. The attitude of not trusting what my doctor was saying was counterproductive because in order to heal, you need to believe and have faith that what you are doing to your body to heal it is making you strong and well. I fully understand that I got this attitude from incident after incident of being let down by doctors, subsequently putting my life at risk. After a while though, you have to stop judging people based on something wrong someone else did to you in the past. It doesn't mean we cannot be educated and well informed patients. It means that we are partners with our physicians and we need to hold up our part of that relationship.

There are several other steps I have taken to build a trusting relationships with my doctors (I have several). To start with, I doctor shop. I find a doctor who is going to treat me with the care and respect I deserve. Because if they do, then when differences arise, we can attempt to work them out. I don't doctor shop intentionally and I know this is frowned upon by the medical community, but if I have a doctor who either dismisses my current health concerns or cannot figure out what the problem is, I leave. Pure and simple. I may have worked on checking my cockiness at the door in terms of my medical knowledge, but I know my body. I know when there is a problem. Because of this tactic, I am on my fifth rheumatologist in three and a half years. And you know what? After all that time, I finally found one who correctly diagnosed the autoimmne disorder I have and is working with me to find the most beneficial medical treatment for my disorder.

I go to my appointments prepared and well informed so that my doctor takes me seriously. I ask questions, lots of questions. Not questions to challenge their medical knowledge, but questions that require an explanation for a diagnosis, treatment, or medications. Answers that will help me to understand what the plan is and subsequently help bolster my confidence in them. Finally, I try to remember that at the end of the day, my physicians are just human. They are not perfect. They are not God. They are people like you and I who happen to have a lot of education; which enables them to be called "doctor". Therefore, when one of my specialists forgets a detail about me and asks me again because she just returned from a weeklong conference on the other side of the country, I take a deep breath and just remind her.

Trust takes time to build. And patience. I am now starting to reap the benefits of taking these steps towards building trusting relationships with my doctors. I am more receptive to trying new approaches to managing my illness, whether it is conventional or alternative. I am less anxious. Although I still keep careful track of what is going on with my medical treatment, I am not lying awake night after night wondering if someone screwed up. I am confident in the choices I have made in my medical providers and because of that, I can give up some of the tight fisted control I have felt I have had to maintain over the past sixteen years or so.

I feel a little lighter.

A little freer.

A lot more sane.

Nor'easter 2011 ~ Part Two: Nine Days

2011-11-08T13:01:00.022-05:00

You can read Part One of this blog entry here: Nor'easter 2011 ~ Part One: Survival

We had hope after seeing our precious home all in one piece, but the aftermath from the storm was just beginning. It became quickly apparent to us that it would not be feasible on that day to live in our house. Access to the house was difficult at best and since we had lost power, we had no heat or water. Although we had a fireplace, I knew staying there would be extremely difficult for me since the cold (45-50 degrees) temperature of the house would affect not only my joints, but the Raynaud's symptoms I was experiencing as well. There was also concern over the fireplace affecting my asthma. After weighing our options, Chuck and I decided to go to my brother's condo which was a few towns over. His two bedroom home was going to be cramped with both of us, my brother, and my parents (who were also displaced) being there, but at this point, it was our best option. Luckily, our dog sitter was able to obtain a generator for her home and she agreed to keep our dog Molly with her for as long as we needed.

Trying to get down this road the morning after the storm.

Although Chuck was optimistic about how long our power would be out, I was not. Just from looking at the damage to the trees, wires, and telephone poles, I knew it would be several days before services would be restored.

Several days?

It was nine.

Nine days.

Nine days of uncertainty. Nine days of living out of a duffel bag. Nine days of traveling back and forth from wherever I was staying back to Belchertown. Nine days of trying to manage my autoimmune illness without the tools I needed. Nine days of conflict, worry, and stress.

The days immediately after the storm were like nothing I had ever experienced. Although we were able to hear from all of our family members, the same could not be said for our friends, especially the friends who were at the church with us that Saturday night for the play. Cell service (except for occasional texting) was down for about 24-48 hours and landline as well as internet communication was non-existent for many people. As we drove through Belchertown and other surrounding communities those first two days after the storm, nothing appeared to exist as it previously had. Supermarkets were partially lit on generator and open for nonperishable food only. Cashiers wore winter coats over their clothes. Access to gas was a serious problem and wait times at the gas pump could be as long as an hour. Schools were closed indefinitely. Shelters were set up in many communities for people who did not have an alternative place to live. Many people could not go to work due to massive power outages throughout New England. Life as we knew it had changed.

The red circled area is the massive power outage on the east coast

When an event of this magnitude occurs, oftentimes people feel isolated and disconnected. Although I was staying with various family members throughout the week, I still felt very disconnected from my community and the world in general. It was posted on Facebook a few days after the storm that the parish hall at my church would be open as a shelter during the day. I clearly remember the first day I went to spend some time in the warm parish hall. I had been at my house for about an hour getting some clean clothes and necessities as well as checking on the house. Then I went to the church. I was so exhausted, in pain, and frustrated with still not having power. I walked up the steps into the parish hall and there was my minister, with a smile and a hug. All of a sudden, I felt reconnected. I felt like I was home again.

There were a lot of other emotions I felt that week that I was not used to experiencing or at least not experiencing so intensely. Anger...fear...helplessness. As the days continued on, the biggest issue contributing to all these emotions was the inability to get our power restored. The storm was on a Saturday. Fallen trees were not removed from our road until Wednesday and we did not see a single utility worker until Friday. Every time I would drive down the road, I would hold my breath in the hopes of seeing a truck from National Grid (the power company for my town) working on the lines but for five days, there was nobody. There are many theories as to why this situation happened the way it did. Some people say the storm was so devastating and covered such a large area, that it was impossible to get power restored quickly. Other people were saying that National Grid was unprepared for managing a disaster. Now looking back, I personally feel that it was a combination of those two factors. The reality was that at the end of the day, it didn't matter the reasons. I was still homeless.

A tree precariously suspended over power lines.

I knew everyone I cared about was safe. I knew my home was intact. But as the days went by, I became more and more desperate to return to my routine. I missed my dog. I missed sleeping in the same bed as my boyfriend, who had decided to start sleeping back at the house in order to keep an eye on our house. Things were not the way they were supposed to be. I was baffled with myself because I was so fortunate in that we were not injured, our home was not destroyed, and I had a warm place to stay at night. What right did I have to feel so upset?

What I came to realize over the course of those nine days is that I had every right to be upset with the situation. My safety had been threatened. My home had been threatened. My overall wellbeing had been threatened. I was a victim of a natural disaster.

Victim.

This is not a word I like to associate with myself but that did not make it any less accurate. We were all victims on that fateful day in October when Mother Nature decided to take her fury to New England. But the residents of Belchertown, Massachusetts, and all the other areas hit by this devastating storm became more than victims. We became survivors, in every sense of the word. We stood by each other as best as we knew how with what we had. We gave refuge to each other. Sometimes that came in the form of a warm place to sleep at night. Sometimes it can in the form of a hot meal after eating packaged food for days. Sometimes it came in the form of a hug or a safe place to cry. I know in the town of Belchertown, I felt, as I have in the past, a feeling of community.

Our road (Route 9) two days after the storm

It has now been twenty hours since the power to our house has been restored. Twenty hours since I returned home and got my life back. But not exactly back to the life I knew. It's a little different now. The shower feels hotter. The bed feels more comforting. The trees in our yard give me pause now.

I am a little more vulnerable than I used to be.

More humble.

More appreciative.

All because of nine days.

Nor'easter 2011 ~ Part One: Survival

2011-11-06T14:24:00.001-05:00

"If you have a major disaster involving hundreds of thousands, or in this case millions of people, whether it be a natural disaster or an act of terrorism, the first 72 hours are going to be totally chaotic no matter what you plan to do." ~ Warren Rudman

Street near our house (Bay Road) morning after the storm. The road is to the left of the photo.

We went out that night, despite the weather warnings of a significant snowstorm. Snowstorms in New England are not a novelty. Seen one snowstorm, you've seen them all is my thought. I was involved in our church's production of the popular play "Our Town" that evening and as they say, the show had to go on. The cast had been rehearsing for weeks and this particular Saturday night was the last performance. I probably would have given anything to stay home that night due to a recent flare up of my autoimmune symptoms and from keeping a more hectic pace than usual over the past few weeks. But I had committed myself to the show and I was determined to see it through to the end.

It began to snow around 2pm that afternoon and as I got ready to be at the church for 6pm, I kept telling myself that soon I would be able to be at home and snuggled in my bed. I had nothing scheduled or planned over the next several days, except for Sunday church service, and I could get some rest which would hopefully help alleviate some of my symptoms. I had decided to send my dog to the dog sitter's house overnight since we would be away from home for longer than usual that day. Little did I know that I would not see her again for five days.

During that afternoon and evening, the winter storm blew through parts of New England causing widespread devastation. Snow total amounts in Western Massachusetts varied between 10 and 30 inches. Trees were still loaded with leaves; therefore the snow and wind caused damage similar to a hurricane, rather than a snowstorm. While we were inside the church entertaining about fifty to sixty people and putting on a great performance, unbeknownst to us, our small town was being ravaged by the storm to a degree that none of us could have anticipated.

We decided to postpone our cast party after the performance that evening and got into our cars to make the slow journey home. As Chuck (my boyfriend) and I drove at a snail's pace through the center of town, I started to get the eerie feeling that this was not just a typical snowstorm. Everything was pitch black; the signs for the stores, the traffic lights, and the street lights, everything. It was difficult to even navigate ourselves through the familiar streets without our usual landmarks and traffic signals to guide us. Since we only live about seven minutes from the church though, I figured if we took our time, we would make it home eventually.

That was, until we came to our road, which is actually a main state route that traverses the length of Massachusetts (Route 9). Cars were backed up in front of us although initially, we could not determine why. Cars that were coming towards us in the opposite lane skidded this way and that way, narrowly avoiding crashing into us. Some cars were abandoned right in the middle of the road. To say the road conditions were treacherous would be an understatement. The road was pitch black and with limited visibility. Tree limbs and whole trees themselves were falling onto the road. We couldn't go forward and we couldn't go back. As we eventually moved a little further along the road, we were told by another motorist that one of the trees had fallen across the road onto a car and there was no way through. There were no police or emergency personnel. Vehicles were turning around and heading back towards town, which was delaying the traffic. Cars without four wheel drive were requiring several people to push the vehicle up the hill. At that point, we turned around in the road and began heading back towards town.

As we waited for each car to be pushed up the hill, I sat there with my heart racing. Very few times in my life have I ever been that scared. Why? Because we were sitting ducks. As we idled on the narrow road with guardrails on each side, we could hear the cracking of the trees and their limbs. I kept my right hand on the car door handle and put my legs in a position to enable me to quickly exit the car should a tree start falling down on our SUV. Chuck kept his eye on the road while I kept my eyes on the trees around us.

Luckily I had posted on Facebook via my cell phone that we were having difficulty in order to warn others who may be heading down our road. A friend of mine, who lived back in the center of town, responded that although she had no power, she had running water and a gas fireplace. More importantly, it was a safe place for us to spend the night. We precariously made our way to her house and over an hour later, thanked our lucky stars for having made it to her home safely.

Our road (Route 9) two days after the storm

The next morning we attempted to make our way back to our home, initially with no success. We were also low on gas in my car (I know, my mother always yells at me for keeping my gas tank too low!) and then realized exactly what a tough situation we were in. Nobody had power in town; gas stations, ATMs, restaurants, convenience stores, NOBODY! We decided to try and head towards Amherst, which is the next town over, and were shocked at what we saw. Fallen trees, snapped utility poles, fallen power lines, abandoned cars. Everywhere. At some points, we actually had to do a bit of off roading with my SUV in order to get over to the next town. Luckily we did find a gas station to fill up at one hour later where it was widespread panic. People were grabbing nonperishable goods off the shelves as they didn't know when they would be able to gain access again to a store. ATM machines at the gas pumps were sporadically working. We realized that we only had $45 in cash between the two of us for god knows how long and we were trying to figure out the best way to use it. Eventually we got one of our credit cards to work at the pump and we tucked the $45 away hoping it would be enough to see us through if we had no access to banks or ATMs over the next several days.

We then decided to try and make our way to our home from the opposite end of Route 9 which was the road the gas station was on. Luckily our dog was not home alone (so glad I booked that dog sitter!), but I had none of my medications and we feared the worse had happened to our home. We live on a lot surrounded by large oak and pine trees and all I could envision was one on top of our home. Both Chuck and I had spent some time back in June doing some relief work in a nearby community that was struck by a tornado and the images of those obliterated homes was all my mind could see.

As we drove further down Route 9 towards our home, we were stopped at a road closed sign by a town police officer who instructed us that we could not continue down the road. I got out of the car and told him that I needed to get medications, especially since the stores were all closed. After giving us specific instructions about how to deal with fallen power lines, he allowed us through the blockade to go as far as our car would let us. He told us we may need to walk a part of the way. My Kia Sportage got a work out that day, but held steadfast as it swerved around downed power lines and large trees to deliver us right to the top of our driveway. It was so strange to leave our car right in a road that usually sees traffic zooming by at 50mph. Now, the usually busy road looked like a path through an area of dense woods.

As we approached our property, I could barely hold back the tears. They say that when a disaster strikes, the most important thing is that you and your loved ones are safe. While this is true, it is also traumatic to be dealing with the possibility of where you call your home no longer existing or being severely damaged. Where would we go if we couldn't live there? What if our safe haven in this world was no longer? I could see Chuck tense up as we got closer. This house was so important to him. They say that a house is just a building but it wasn't. It was our home.

Our home was still there. And in one piece. Relief flooded my body. There were more trees down than I could count, but the house was intact. There was hope.....

Photos Courtesy of Chuck Myers/Christine Molloy

Ravaged Massachusetts

2011-11-01T10:11:00.000-04:00

Quick post from storm ravaged Massachusetts.

On Saturday October 29th, a major winter storm hit New England and has literally paralyzed many areas of this part of the country. The area I live in, which is Western Massachusetts, saw about a foot of snow which while not unheard of around here, the damage it has brought is unusual. Because of the storm's early arrival, leaves were still on trees and most of the western part of the state, as well as other areas of New England, have lost power due to fallen trees. After driving around this area hunting for gas and food over the past few days, I am shocked that more people were not injured or killed. There has been one death that I am aware of related to this storm.

That was three days ago. I am forty years old and have never experienced anything like this. It is difficult to find gas in this area and food is limited to non-perishables at stores with no power. Some areas are slowly having power restored thanks to the efforts of our local power companies as well as many out-of-state companies. However the damage is great due to the amount of downed trees and power lines. Communication is difficult however appears to be improving very slowly.

My boyfriend and I are fortunate because I know one person who did not lose power through the grace of God. We have been staying at my brother's house about 25 minutes away from us. Our home has no heat, electricity, or running water (we have a well) therefore we are quite grateful to be here. Our dog Molly was spending an overnight with a dog sitter Saturday night until Sunday afternoon. Thank God she was there because we were unable to get back to our home Saturday night and have not been able to stay at our house since. Our dog sitter also lost power but she got a generator and has agreed to keep Molly with them until we can bring her back home. The circumstances at my brother's home make it difficult to have her here as my parents are also camping out here during the day. I am so grateful for this dog sitter.

We were finally able to get to our home after the police gave us permission to drive down to the house to get my medications, clothes, etc. Then yesterday Chuck and I went back to make the driveway accessible and clean up some trees. The house is in one piece. The worst thing that happened was we lost a good majority of our perishable food and will probably lose the fish tank.

I plan to write more about the experience in the near future but the shoveling I did yesterday (Chuck was doing trees), sleeping on an air mattress for several nights, the change in my environment (i.e. dryness factor), and overall stress has made an already existing autoimmune flare worse. I have no access to my acupuncturist right now for obvious reasons so I caved and took some narcotics and am going to try and get some rest in my brother's bed while he is at work and Chuck is at work. I am hoping later today or more likely tomorrow to get to my dog sitter's house to spend some time with Molly. Meanwhile, we wait for the power to be restored and for life to return to a more normal state. We also sit in the great appreciation of how fortunate we are.

Drugs and Money

2011-10-27T15:25:00.000-04:00

"Competition makes things come out right. Well, what does that mean in health care? More hospitals so they compete with each other. More doctors compete with each other. More pharmaceutical companies. We set up war. Wait a minute, let's talk about the patient. The patient doesn't need a war." ~ Donald Berwick

I am more disgusted than usual with the health insurance and pharmaceutical industries lately. Health care in this country is dictated by politics and money which of course in no way benefits the patient. However in an attempt to turn negative experiences into constructive information that may help other people, I am going to try and make this a blog entry more about empowering other consumers and less about my rant regarding the terrible demise of health care in this country. Because except for being an active, registered voter, I feel powerless about changing the health care situation in this country. However I do have some control over figuring out how to get my medical needs met and then passing that information on to other consumers.

I have a prescription steroid inhaler that has a copay of $50 per month which is considerably more than other inhalers on the market. The reason I need this particular inhaler is because it is the only steroid inhaler on the market for my autoimmune induced asthma that has been documented to not cause a fungal infection of the mouth called thrush. When using previous inhalers, I have had a terrible time with thrush spreading into my esophagus and causing complications which have included difficulty swallowing. Then I have to take potent antifungal medication to clear the infection. Since starting this new inhaler (Alvesco), I have been thrush free. This new inhaler is much more expensive and I think part of this is due to the fact that it is the only one like it on the market.

$50 may not seem like a lot to spend on something that works so well, but it is when you are on a fixed income, you have at least seven other prescriptions, and you spend approximately twenty-five percent of your income on medical care every single month. An income that is only sixty percent of what it used to be three years ago. I am not revealing all this information because I want my readers to feel bad for me. I actually hesitate to reveal these details because sometimes people (i.e. my well intentioned brother) take these comments as a statement that I do not have enough money to survive. So let me just clarify that I can manage. We all have to make choices in life and I manage because I make my medical expenses a priority. I get by month to month because I always look for the best ways to manage my medical costs and I am very good at managing my finances. I manage month to month because I am fortunate enough to share living expenses with someone who is always looking out for my best interests. I am quite blessed because I have a family behind me who would never let me go without a necessary medication and would do everything in their power to pool resources to make sure I have what I need. I know that there are patients out there who have no health insurance and minimal available resources to them.

But here's the thing. I am fiercely independent now. Although getting sick and incurring these medical expenses is not my fault, it is my responsibility to figure out how to pull my weight in order for my boyfriend and I to manage our expenses. So when my steroid inhaler dose got increased recently and the insurance company started charging me a double copay every month ($100), I couldn't just sit by and say "oh well, that's how it works." Because I never know when another unexpected medical expense is going to come from around the corner.

So what did I do? Well, I started by complaining about it on Facebook. This was a good idea because there were people on my friend's list who had some helpful suggestions. I also contacted my pharmacy to see if they had any suggestions of how I could avoid the double copay. I went to the website for the Alvesco inhaler in the hopes of finding some type of discount program for this medication. They had a great discount program which would reimburse up to $75/each month towards my copay. Too good to be true? Of course! In the fine print it stated that because of state legislation, only one state in the union was ineligible for the discount program and of course that state was Massachusetts.

This all brought me to this morning which is when I decided to call the doctor who prescribes the inhaler and see if he had any suggestions. I spoke with his nurse who was quite helpful. We discussed a few options and came up with a plan. She said she would put aside the last two samples she had in the office of the inhaler for me to pick up tomorrow. Although she didn't have any samples two months ago when I was there, she had them now. Lesson learned: ALWAYS call your doctor to check for samples!

These samples would get me through to my next appointment with my pulmonologist next month during which time we could try and figure out if there was a way to rewrite the prescription so I only pay one copay. What the nurse suggested next though was even more critical. The nurse told me to see if I could use a mail order pharmacy through my insurance company. I had used one of these a long time ago, but haven't investigated this option since being diagnosed with the autoimmune disease because my medications were changing on a monthly basis. Mail order programs give you a three month supply of the same medication at a time and that wasn't practical for me. Then I pretty much forgot all about it. Now I have several medications that are the same dosage for periods of time so I decided to check out this option.

As luck would have it, my insurance does have a mail order pharmacy called Express Scripts. To be honest, I did a Google search of reviews for them and those reviews were not favorable at all. However after reading their website, I decided that at this point, the amount of money I was going to save was worth taking the chance with this company. The process was very easy. I called their 1-800 number and told them I wanted to start up an account and see if my regular medications were covered. Because they work with my insurance company, they already had my drug and doctor information. They would call the doctors for a new prescription for a 90 day supply of each medication. I told them which medications I wanted, double checked the doses, doctor names, and doctor phone numbers. They told me how much they would cost and how the payment process works.

For four of my medications I paid a two month copay for a three month supply of medications. The exception was one of my thyroid medications which is on a special discounted medication list and only cost me $3/month. By the end of the phone call, I had saved 40% on five different medications. The other advantage is that all of my reordering can be done online and I don't have to frequent the pharmacy as often. That comes in handy when you are not feeling well. I am sure there are disadvantages to the program, but I am going to remain optimistic and hopeful that it will remain to be as easy and cost effective for me as it was today.

So those are some of my tips for saving money on prescriptions. The biggest point I want to make sure that I make here is to use your resources as wisely as possible. Contact your pharmacy, doctor, and insurance company. See what options are available and make sure to be open minded to what resources are available out there.

What ways do you have to save money on prescriptions?