For Everything There is a Season

"In order to write about life, first you must live it." ~ Ernest Hemingway

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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

Giving Up and Finding Peace

January 14, 2012 / / 9 Comments
“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

January 9, 2012 / / 10 Comments
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       

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