For Everything There is a Season

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

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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       

Going to the Chapel

December 28, 2011 / / 8 Comments
“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

Music and Love

December 19, 2011 / / 4 Comments
“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

December 11, 2011 / / 5 Comments
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.

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