Sunday, February 26, 2012

Beaten Down and Other Musings

Fall seven times, stand up eight. ~Japanese Proverb

I know "beaten down" seems like a depressing entry for a blog title. And I also know that it is difficult for some of the people in my life, either who read my blog or follow me on Facebook, to read an onslaught of negative thoughts about what is going on with my medical issues. Heck, it is hard for ME to be in my own head sometimes lately or even to read a lot of negative thoughts on Facebook pages such as the Sjogren's syndrome one that I follow. But I have promised myself to start being more honest in not only my writing, but also in my interactions with other people. So here we are. The thing is: when I write and am able to process my thoughts, my alter ego, the much stronger one also known as "the optimist" usually finds her way out. Bear with me.

Just as Chuck and I were starting to watch a movie at home last night, I leaned over to him and said "I just feel beaten down." I wasn't sure really what my problem was. My mood swings from the steroids had lessened just enough to make me think that I will make it through this course of treatment without continuing to cry or wanting to kill someone several times a day.

Not even joking about that one. I cannot believe people actually take that stuff for a non-medical reason!

But I had not been feeling like myself all day and feeling well, beaten down; maybe even overwhelmed from trying to process all the events of the past few weeks. After all, I had been diagnosed with two blood clots in my lungs, Guillain-Barre syndrome, and had a recent and exhausting trip to the emergency room just two days prior with severe head pain, nausea, and increased tremors. I was checked out for bleeding in my head and a blood clot to my brain which all turned out negative. On top of it, I was constantly trying to deal with insurance issues, disability issues, appointments, rude people on the other end of the phone, my computer crashing, getting what I needed medically from my health care team, the list goes on and on.

Chuck's response to this big revelation I had last night was that of course I felt beaten down, who wouldn't considering recent events in our lives as of late? He was not surprised by this at all. But I was. I am a fighter and I attack everything head on until I get to the other side. I know that. But as I thought about it some more, I realized that this feeling of being beaten down wasn't about wanting to give up but rather to acknowledge and accept (there's that word again!) where I am at during this given moment in time.

Physically my body is beaten down because it has been poked, prodded, and stuck with more needles in the past few weeks than it should ever have to see in its lifetime. It has endured countless sleepless nights and long days of appointments and tests. It is worn out. Worn out from behaving in a way it is not supposed to with its altered heart rates and blood pressures, tremors, weakness and, new pains that it is not used to. My body is trying, that is for sure. It is begging me to be good to it with the food I put in it and the care I give to the massive bruises and hematomas that litter my body from my legs to my belly to my arms. Sometimes I feel like it is screaming out to me to just stop all the invasiveness that the others inflict on it and just let it be. I want to do that; to let it be. But I tried to let my body do its own job and it could not.

My body wants to feel pretty again. Sure, I was never a supermodel to begin with and my body is actually a lot lighter than it used to be, but it does not feel pretty. It feels disfigured from the bruises and the rashes. From the hair that is starting to fall out from the steroids and the often pale, makeup less face that stares back at me in the mirror....the darkened eyes that used to be so much more vibrant. My body does not understand that it is an effort to get it clean every day right now and everything else is not as significant. Maybe that is where I go wrong because really, a little concealer is not that much effort is it? Even though I am angry at my body for betraying me so much lately, maybe seeing lighter eyes with less dark circles underneath them in the reflection of the mirror will make me less angry with my body for its obvious betrayal.

I love the Nathan's hot dog competition. At least I am not doing this to my body!!

Feeling beaten down is not just physical but emotional and mental as well. The act of processing a lot of events while trying to maintain some shred of normalcy, routine and self respect is difficult at best. It doesn't matter if it is related to having a chronic illness like I have or any other issues such as divorce, abuse, loss of a career, loss of a love, or loss of yourself. Fear of the unknown fills your head.

I will admit, I am scared. I am freaking scared to death. I don't think I fully realized how much until yesterday. I am afraid of what the results from another MRI will show this week. I am scared of going for a neurological procedure (EMG) that I know for a fact will be painful. I am scared of the results; whether they will be bad or whether there will be any results at all which could help define what exactly is going on and how we are going to take care of the problem.

I am scared because I know my body is not acting right and I fear that it will not get back to where it was even just two months ago. Will I ever be able to do an activity again for more than ten or fifteen minutes without needing to sit or lie down? Will I ever be able to stoop down again without falling over or needing help to get up? Will I ever be able to shower and wash my hair again without it being this epic event that exhausts me and makes me shake? I know since I have Sjogren's syndrome, my body will never exactly be the way it used to be, but will my body ever get back to where it was several months ago?

And as my fears consume me, I think back. To other difficult times and to all the other struggles and questions I had during those times. Maybe like we all do, I have learned from prior experiences. When I had a severe heart arrhythmia (before having surgery to correct it), I questioned if I could even get through a day without a heart episode. I questioned whether I could make it a month without an emergency room visit. When I had cancer in my mid-twenties, I questioned whether I was going be able to endure the treatments, if I was going to get married. I questioned whether or not I would live to see my twenty-fifth birthday.

All of those questions were answered. And I saw my twenty-fifth birthday, as well as my fortieth. I got through it.

So for now, I will accept the fact that it is all right to feel beaten down; to allow my body to go through that process. It means I am down, but I certainly not out.

I will have faith.
I will trust in God to see me through.

I was sitting in church this morning and looking around at the various people scattering the pews and wondering how many of them were feeling beaten down right at this moment? Or wondering how many of them had maybe felt beaten down at a different time in their lives? A time where some things did not make sense or that they felt they had endured more than their fair share of beatings so to speak. I don't have to know all of their stories to know that those stories are there in some form or another. Tales of survival. Tales of people who became stronger and more compassionate people because of what they had to endure . Journeys that were easier than mine and definitely journeys that were more difficult than mine.

People who were beaten down but yet rose up.


And again.

And again.

Just like I will.

Photos: Courtesy of Google Images


  1. Most have us have been there, feeling the physical weight of our tribulations on our shoulders, taking a toll that leaves very little room for all but mere survival. The nature of the trials may change from person to person, but the effect is the same. Lord knows you have dealt with more than your fair share. You will make it through. It won't be easy, or quick, but you will come out the other side, and remember that you are not alone. Love you. Char

    1. Lucky for us, we both have very strong shoulders! I love you too!

  2. I was just crying to my husband earlier because of frustrations with my body that hurts and brain that can't seem to focus these days. But tomorrow morning I will rise and begin my day anew. You are a strong woman. Thank you for sharing your life so that others don't feel alone.

    1. You are most welcome Laura.I am glad that this morning you will find the strength and courage to rise and begin anew. Every morning affords us the opportunity to do that and we have to try our best to take advantage of it! Wishing you a peaceful and less painful day.....

  3. I am sorry you are having such a difficult time right now. And, for the record, as I sat behind you in church yesterday, I was thinking how good you looked, and how content and peaceful you appeared given all the hell you have been through recently.

    1. Thank you Elise! It was good to talk to you Sunday...that is the benefit to changing around your "spot" every once in a while!

  4. It's ok to be scared. Just put the past behind you. Don't let the fear consume you. You HAVE to let it go and do what you say. Trust in God. Again, the outcome may not be what you want, but it is what he wants. God always gets what he wants and he wants you. and remember, I believe it with all my heart and soul-"Remember, I am with you always, until the end of time" Jesus Christ-Matthew 28:20. He is always there, always. He never breaks his word to us. The Victory is ours. Reach out and take it. No disease, no fear, no Satan, nothing will beat you-not even death! I love you and keep on fighting!!!! Praise Jesus Christ, damn. I cannot thank him enough, even for all the hard times I have had to endure and let me tell you, there have been plenty and longsuffering as some people know.

  5. First of all, I am so tickled that you ended your painful blog with a potty joke. Awesome. Second, your words remind me of another sage from another time...a guy named Paul who wrote:
    But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. 8 We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9 persecuted, but not abandoned; struck down, but not destroyed. 10 We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. 11 For we who are alive are always being given over to death for Jesus’ sake, so that his life may also be revealed in our mortal body. 12 So then, death is at work in us, but life is at work in you.--2Corinthians 4: 7-12

    1. YOU are the only person that commented on realized and commented on the last photo...yay!Iit was intentional.Thanks for the Paul was very comforting.

  6. what doesnt kill us makes us stronger, stand a little taller