For Everything There is a Season

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Helping the Person With A Chronic Illness.

January 25, 2012 / / 20 Comments

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

January 23, 2012 / / 7 Comments
“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

January 19, 2012 / / 9 Comments
“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

January 18, 2012 / / 6 Comments
“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

January 17, 2012 / / 5 Comments
“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

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