There are times, and today is one of them, when I feel like I have sandpaper in my soul. This is hard to explain, but I bet many of you know this feeling. I will try to articulate this. The feeling manifests as agitation and immobilization. You feel like you have to do something, but you can't get started. Little things are irritating-unbelieveably irritating.
It as if someone or something was inside of the physical shell of who you are and rubbing sandpaper on the inside of that shell. It is not really about circumstances, but they do play some role. It is just a feeling that will pass, soon I hope.
So, for today, I will just observe the sand paper and be still until it passes. It always passes.
Saturday, March 31, 2012
Monday, March 5, 2012
Three P's of LuPus
My journey with lupus has taken me from food stamps, near homelessness and disability back to a happy and productive life. It took nine years! For eight of those nine years I have been involved with the Lupus Foundation of Florida, first as a volunteer group leader later adding the role of newsletter editor and facilitator coordinator. After four years on disability, I decided to try to return to work. I accepted a part time position at the Lupus Foundation of Florida and a post as director of music ministries at a small, low stress Catholic church.
Over those years, I have made many lupus friends and I have shared their journeys. Some people can't get past the feeling of being a victim. But for others, something clicks and they take all the anger and frustration and decide to fight like a banshee. My "ah ha" moment came after a visit to a mental health professional who was absolutely clueless. Recently, in a Facebook post, a friend who was diagnosed about two years ago made this post in our support group page. I asked permission to use it.
"Today was the battle of lupus versus ME and I won. I went for my 6th infusion and my blood count is UP...Next week, I am going for the improtant test and another infusion. I KNOW the important test for ferritin will be FABULOUS. When I started 8 weeks ago my ferritin was 25 (normal is 150+) and after three treatments it went to 47. Now, I know it will be 100 next time and then watch out, California here I come, ready or not. I won't let this damn disease control my life; I am in control. Eveyone of you with lupus, fight this disease with all you have and you will win! It takes perserverance, persistance and being pissed off (instead of feeling sorry for yourself). Those are my three P's. I don't usually swear but I will be damned if this disease will interfere with my future plans! I didn't work hard all my life to give in to Lupus when I have so much to do in my "rusty" years. Live, Love, Laugh, and Fight! Love you all."
Thank you L.K.!
Over those years, I have made many lupus friends and I have shared their journeys. Some people can't get past the feeling of being a victim. But for others, something clicks and they take all the anger and frustration and decide to fight like a banshee. My "ah ha" moment came after a visit to a mental health professional who was absolutely clueless. Recently, in a Facebook post, a friend who was diagnosed about two years ago made this post in our support group page. I asked permission to use it.
"Today was the battle of lupus versus ME and I won. I went for my 6th infusion and my blood count is UP...Next week, I am going for the improtant test and another infusion. I KNOW the important test for ferritin will be FABULOUS. When I started 8 weeks ago my ferritin was 25 (normal is 150+) and after three treatments it went to 47. Now, I know it will be 100 next time and then watch out, California here I come, ready or not. I won't let this damn disease control my life; I am in control. Eveyone of you with lupus, fight this disease with all you have and you will win! It takes perserverance, persistance and being pissed off (instead of feeling sorry for yourself). Those are my three P's. I don't usually swear but I will be damned if this disease will interfere with my future plans! I didn't work hard all my life to give in to Lupus when I have so much to do in my "rusty" years. Live, Love, Laugh, and Fight! Love you all."
Thank you L.K.!
Sunday, February 26, 2012
Resilience
I am sitting here tonight, reflecting on the week that just passed. As the week approached last Friday, I knew that I had huge challenges and a huge amount of work. Last Sunday, I had a 15 hour non-stop work day to kick things off. This past week was Ash Wednesday (church and school obligations), the spring musical at school meaning that we were in "hell week" for rehearsals, the visit of a top ranking Salesian to our parish and attendant functions, and the moving of the office of the Lupus Foundation of Florida. I thought, "That's more than enough for a 60 year old woman with lupus."
But that was not enough. A week ago Friday, I received a message that my estranged father was in Hospice care and would be happy to see me. That night, I went on to paint sets at school, but took time to go to the chapel to cry and pray. The next morning, my oldest son (age 36) went with me to Hospice. I had no idea what would happen, but I was determined to do the right thing. While there, I found out that my father died about an hour before I arrived. The week was spent trying to figure out who was going to arrange his service (when you are estranged these things are complicated) and being attacked for stepping up. I had to remind myself that I cannot control what other people do or say, but I CAN control my reaction. It was hard not to let old rusty buttons be pushed. But I held firm.
Tonight, the whole insane week is behind me. I am still standing. I am still healthy. Resilience is an amazing quality. I learned resilience by going through many hells. Each time I came out on the other side, I had a new understanding of my ability to make it through trials and create a new life. I never thought of it as resilience until I read this pamphlet from the American Psychological Association, "The Road to Resilience."
And so, in quiet solitude, I rejoice in my resilience. My prayer is that you can reach deep down inside and find your resilience too.
But that was not enough. A week ago Friday, I received a message that my estranged father was in Hospice care and would be happy to see me. That night, I went on to paint sets at school, but took time to go to the chapel to cry and pray. The next morning, my oldest son (age 36) went with me to Hospice. I had no idea what would happen, but I was determined to do the right thing. While there, I found out that my father died about an hour before I arrived. The week was spent trying to figure out who was going to arrange his service (when you are estranged these things are complicated) and being attacked for stepping up. I had to remind myself that I cannot control what other people do or say, but I CAN control my reaction. It was hard not to let old rusty buttons be pushed. But I held firm.
Tonight, the whole insane week is behind me. I am still standing. I am still healthy. Resilience is an amazing quality. I learned resilience by going through many hells. Each time I came out on the other side, I had a new understanding of my ability to make it through trials and create a new life. I never thought of it as resilience until I read this pamphlet from the American Psychological Association, "The Road to Resilience."
And so, in quiet solitude, I rejoice in my resilience. My prayer is that you can reach deep down inside and find your resilience too.
Saturday, February 25, 2012
Typhoid Mary
We have all had the uncomfortable experience of being around someone who has been diagnosed with cancer or who has a loved one diagnosed with cancer. We don't know what to say. We don't know how to act. We don't want to ignore it, but we don't want to acknowledge it either.
When otherwise healthy people are around those of us with chronic illnesses, it's not much different. You see, we are a walking, breathing reminder that it can happen to them to. In fact, more than one in three Americans has a chronic illness.
In order to make sense of this, healthy people try to figure out why we are sick and they are not. They are looking for a way to convince themselves that they are going to be OK. They are looking for something in us that they can blame for our condition.
As I was wheeled into the emergency room with congestive heart failure brought on my lupus, my friend said, "If only you stopped smoking you would not be here now." Recently, a lupus patient shared the fact that her brother blames her lupus on her weight. (Of course the steroids used to treat the lupus might just have something to do with that!)
In these situations, it is helpful for us to take a step back and put things in perspective. What these people say sounds terribly judgemental. When we hear it, we are angry and defensive. But if we realize that this kind of blaming is how they make sense out of what happened to us and that they are desperately trying to reassure themselves that they won't suffer the same fate, we can choose a different reaction.
When otherwise healthy people are around those of us with chronic illnesses, it's not much different. You see, we are a walking, breathing reminder that it can happen to them to. In fact, more than one in three Americans has a chronic illness.
In order to make sense of this, healthy people try to figure out why we are sick and they are not. They are looking for a way to convince themselves that they are going to be OK. They are looking for something in us that they can blame for our condition.
As I was wheeled into the emergency room with congestive heart failure brought on my lupus, my friend said, "If only you stopped smoking you would not be here now." Recently, a lupus patient shared the fact that her brother blames her lupus on her weight. (Of course the steroids used to treat the lupus might just have something to do with that!)
In these situations, it is helpful for us to take a step back and put things in perspective. What these people say sounds terribly judgemental. When we hear it, we are angry and defensive. But if we realize that this kind of blaming is how they make sense out of what happened to us and that they are desperately trying to reassure themselves that they won't suffer the same fate, we can choose a different reaction.
Saturday, February 18, 2012
I Don't Know How to Do This
Yesterday, I came home from a long and challenging work day to find a message on Facebook from my first ex-husband. My father is in hospice with colon cancer and would like to see me. My father and I haven't spoken or seen one another in 26 years. I am going this morning. I don't know how to do this.
When I got the word, I called or emailed 3 of my strongest "go to" people. The chats were brief. There is hardly any advice one can give in situations like this. They know that and so do I. I was able to step back just enough to look for the right resources. Hospice chaplains know how to help people do this. I will meet with the chaplain before I go in to see my father.
When we are diagnosed with a chronic illness, we don't know how to "do this." I certainly didn't. But after a period of deep despair and depression, I had a moment of clarity that changed my life and my relationship to my lupus. I thought, "If I am going through this, then other people have gone through this. Some of them have come out successfully on the other side. Some of those people must have written books about it. I will find them and I will learn."
In our pain, whatever pain that might be, it is easy to isolate ourselves. It's easy to crawl in a hole and pull the hole in after you. It's easy to believe that you are the only person who is suffering. The truth is we all suffer at one time or another. Reaching out to people who can light our way makes all the difference.
When I got the word, I called or emailed 3 of my strongest "go to" people. The chats were brief. There is hardly any advice one can give in situations like this. They know that and so do I. I was able to step back just enough to look for the right resources. Hospice chaplains know how to help people do this. I will meet with the chaplain before I go in to see my father.
When we are diagnosed with a chronic illness, we don't know how to "do this." I certainly didn't. But after a period of deep despair and depression, I had a moment of clarity that changed my life and my relationship to my lupus. I thought, "If I am going through this, then other people have gone through this. Some of them have come out successfully on the other side. Some of those people must have written books about it. I will find them and I will learn."
In our pain, whatever pain that might be, it is easy to isolate ourselves. It's easy to crawl in a hole and pull the hole in after you. It's easy to believe that you are the only person who is suffering. The truth is we all suffer at one time or another. Reaching out to people who can light our way makes all the difference.
Friday, February 17, 2012
Are Your Ears Connected to Your Mouth?
The busy-ness of life is stressful for most people. For those of us with chronic illnesses it is downright overwhelming. I have a very challenging 10 days staring me in the face. We are moving the lupus foundation office. Ash Wednesday is next week which means additional preparation for church and for school. One of the high ranking Salesians is visiting the parish. I have two youth Masses and substituting at another parish in the evening. And this weekend I have 4 performances of Alice in Wonderland with my students and there is still work to be done on the sets. There are other things, but this list is more than enough.
Reflecting on this past week, I observed myself listing these activities when I was speaking to people. The more I heard myself articulating the list, the more agitated I became. I am not sure where this script came from. Perhaps, I am trying to validate how hard I will be working by telling other people. Perhaps, I am making some kind of check list.Perhaps I am trying to impose order on the week. Whatever the motivation, the result is the same. I am borrowing stress from the future.
What we tell ourselves and what we tell others can bring us peace or turmoil. Working with lupus patients and people with chronic illnesses, I often hear well-rehearsed litanies of complaints. I used to recite my own litany, especially to friends and family. My hands hurt. I am so tired. The drugs weaken my immune system. My feet are so stiff in the morning I can hardly walk. And on and on...Perhaps I was trying to validate my suffering. Perhaps I thought that saying it out loud would make my suffering real to other people. Whatever the motivation, concentrating on the list caused stress which in turn, made me feel worse.
One night, after playing for Shabbat services at a local Reformed Jewish congregation, an elderly lady who was upset by the sermon went to the rabbi and saidd, "So, Rabbi, are your ears connected to your mouth?" Do we really listen to what we are saying? How is what we are saying impacting our health and our life? Are YOUR ears connected to YOUR mouth? Take a day to be a witness to what you say.
Reflecting on this past week, I observed myself listing these activities when I was speaking to people. The more I heard myself articulating the list, the more agitated I became. I am not sure where this script came from. Perhaps, I am trying to validate how hard I will be working by telling other people. Perhaps, I am making some kind of check list.Perhaps I am trying to impose order on the week. Whatever the motivation, the result is the same. I am borrowing stress from the future.
What we tell ourselves and what we tell others can bring us peace or turmoil. Working with lupus patients and people with chronic illnesses, I often hear well-rehearsed litanies of complaints. I used to recite my own litany, especially to friends and family. My hands hurt. I am so tired. The drugs weaken my immune system. My feet are so stiff in the morning I can hardly walk. And on and on...Perhaps I was trying to validate my suffering. Perhaps I thought that saying it out loud would make my suffering real to other people. Whatever the motivation, concentrating on the list caused stress which in turn, made me feel worse.
One night, after playing for Shabbat services at a local Reformed Jewish congregation, an elderly lady who was upset by the sermon went to the rabbi and saidd, "So, Rabbi, are your ears connected to your mouth?" Do we really listen to what we are saying? How is what we are saying impacting our health and our life? Are YOUR ears connected to YOUR mouth? Take a day to be a witness to what you say.
Saturday, February 11, 2012
Writing Yourself Well
Feelings buried alive never die. Everyone has difficult emotions from time to time. Most of us have gotten pretty good at burying them. If you are living with a chronic illness, you have more than your share of unpleasant feelings. The only way to get past these emotions is to express them. But the feelings are so terrifying that we dare not take the lid off the pressure cooker. We are afraid that if we express even the smallest part of these feelings, we will explode and our arms and legs and head will fly off into space. Keeping feelings buried takes all of our energy, energy that would be better used to heal.
I don't know about you, but no one ever taught me constructive ways to express painful feelings. Last year, I took a Mindfulness Based Stress Reduction workshop and a relationships workshop from a wonderful local psychologist, Beth Meeker. Beth uses a combination of meditation, journaling and small group sharing. Her workshops are typically 5 hours long! Beth recommended The Artists Way: A Spiritual Path to Creativity. There are short, thought provoking chapters, followed by tasks for that week. Some of those tasks are journaling prompts. One of the things the author, Julia Cameron, recommends is what she calls "Morning Pages." She encourages the reader to write three pages in a journal first thing every morning.
Since writing my "Morning Pages" nearly every day since August 2011, I have finally been able to express some tough emotions and let them go. It's no coincidence that my health has continued to improve. I hope and pray that some of you will give journaling a chance. Let me know if you do and please share your experience.
I don't know about you, but no one ever taught me constructive ways to express painful feelings. Last year, I took a Mindfulness Based Stress Reduction workshop and a relationships workshop from a wonderful local psychologist, Beth Meeker. Beth uses a combination of meditation, journaling and small group sharing. Her workshops are typically 5 hours long! Beth recommended The Artists Way: A Spiritual Path to Creativity. There are short, thought provoking chapters, followed by tasks for that week. Some of those tasks are journaling prompts. One of the things the author, Julia Cameron, recommends is what she calls "Morning Pages." She encourages the reader to write three pages in a journal first thing every morning.
Since writing my "Morning Pages" nearly every day since August 2011, I have finally been able to express some tough emotions and let them go. It's no coincidence that my health has continued to improve. I hope and pray that some of you will give journaling a chance. Let me know if you do and please share your experience.
Subscribe to:
Posts (Atom)