Tuesday, August 11, 2015

I have yet to meet the person who says, “Oh goody, I get to take medication several times a day for the rest of my life!” Every pill, every treatment, and every test is a reminder that there is something wrong with us. Adding insult to injury, we mentally recite all the potential side effects of each medication, wondering what horrible things the medication might do in the long run. Is it any wonder most people hate to take medication?

You can change your relationship with medication. Learn what good things each medication does to manage your condition. Every time you take medication, remind yourself that, “I am thankful that I live in a time and place where my condition could be diagnosed and where there are medications to help manage my condition.” As you take each medication, remind yourself of the good it does.

I choose to reframe my relationship with medication.

Thursday, May 21, 2015

Spoiled Identity

Baycare Presentation 5.19.15 Part 2

While presenting at a break out session for a recent Baycare employee in service day, I asked for a volunteer.

“I am going to ask you a question,” I said. “It’s an easy question. The hard part is that I am going to ask you the same question twenty times. You have to give a different answer each time. Are you up for it? Here is the question. Who are you?”

The volunteer nodded her consent. The questioning began. After each repetition she gave a different answer. “I am Denise, a wife, a mother, a nurse, a daughter, a friend.” Then she was stumped. I prompted her, asking if she played sports or had a hobby. Still, nothing! I thanked her and let her out of the hot seat.

We identify ourselves by what we do and by who we are in relation to others. Chronic illness spoils that identity. We can’t do the things we used to do, things that were a significant part of our identity. We lose jobs, have to work less, can’t keep the house as clean as we would like, and have to give up activities we enjoy. We can’t be who we were in relationship to others. Parts of those relationships remain, but other parts slip away. We have a hard time fulfilling our domestic roles, playing with the kids or grandkids or engaging in activities with a loved one. Our image of ourselves as healthy doers is eroded piece by piece. Our identity is spoiled.

I paused to ask the participants, care coordinators for the Baycare system, if the patients they encounter are ever angry. Everyone in the room nodded yes. These patients are angry because they are grieving for who they used to be. Just like we grieve for someone who has died, we grieve for our spoiled identity and for our hopes and dreams for the future. Who wouldn’t be angry? Anger is one of the stages of grief. Yet no one is there to help us recognize that we are indeed grieving or to help us through the process.

Once patients with chronic illness become aware that they are grieving, they can enter into the process. The process is messy and challenging. But there is healing and hope on the other side. We can spend the rest of our lives in anger and depression or we can move forward to create a new identity.

"The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one [or yourself]; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again, but you will never be the same. Nor should you want to be the same. Nor would you want to be". Elizabeth Kubler-Ross and John Kessler.

Tuesday, May 19, 2015

What is your illness model?

Baycare Presentation 5.19.15
Part I

Health professionals know about acute and chronic models of illness. Many patients do not. A broken bone, ruptured appendix, and strep throat are examples of acute illness. The onset is usually swift and clear; a bone is sticking out of your arm, you are in excruciating abdominal pain or you can barely swallow, have a fever, and white patches in your throat. Acute illnesses are easy to diagnose. There is little doubt about treatment. A cure is common. In fact, most people get better and go back to living normal lives. This is the model of illness for most patients.

For a third of Americans, that model just doesn't work. We are the people with chronic illnesses. At the beginning, symptoms come and go. We might even doubt whether we had symptoms in the first place or if the symptoms were all in our head. Just like your tooth stops hurting when you go to the dentist or your car stops making that noise when you get to the mechanic, symptoms of chronic illness may disappear by the time you see the doctor. As symptoms increase in frequency and severity, we begin the diagnostic journey. Not only do many chronic illnesses lack clear diagnostic tests, each illness brings a few illness buddies along to confound the diagnostic process even more. Finally, we are relieved to find out that what we have has a name. Now we can get better! Not so. Treatment for chronic illnesses and the illnesses that come along in overlap is anything but clear. Trial and error may be the norm until the doctor finds just the right combination of treatments. Now we can get better! Not so. Cures for chronic illnesses are rare. So why bother with treatment? Patients and providers, alike, need to remember that in the absence of a cure, the goals of treatment are to reduce and relieve symptoms, slow the progress of disease, and prevent permanent damage.

If patients hold onto the acute illness model is it any wonder that they are angry because they do not get better? Is it any wonder that patients who receive treatment but don’t get restored to full health are frustrated? Is it any wonder that, without hope of a cure, patients become non-compliant?

Saturday, February 28, 2015

Weak and Lazy

"My family doesn't believe I'm sick. They tell me I'm just weak and lazy. They think I do this to get attention. I wish someone would understand." A young woman posted this on Facebook today. Hundreds of people with chronic illnesses, especially women, post a variation on this them every day. If we are really honest with ourselves. we probably had similar thoughts until we moved from the land of the healthy to the land of the sick. Maybe we shouldn't judge the healthy folks so harshly!

Healthy folks need to have a reason for our condition. They need a reason so they can reassure themselves that what happened to us will not happen to them. One of the ways they do this is denial. In this case, denial says, "There is nothing wrong with her. She has a character flaw. She's using this as an excuse to slack off and not carry her weight in this family or society. Even if she does have something, her character is too weak for her to fight it. She should just suck it up, put on her big girl panties and soldier on."

We can't control what they think or say. What we can choose our reaction. Animals act on instinct. Humans get to choose. Why waste precious energy explaining until we are blue in the face when it won't change a thing? Everyone ends up exhausted and irritable. Nothing changes. We can choose to use our precious energy in self-care instead.

Sunday, February 15, 2015

Chronic illness and aging erode identity. We can't do a lot of what we used to do and we can't be who we used to be in relationships with others. We find ourselves grieving for who we used to be. The only way out is to go through that grieving process. It's like we lost someone we love, but that someone is us and part of us is still here grieving. Once we recognize that we are grieving, we have taken the first step to healing.

Sunday, February 8, 2015

Invisible Chronic Illness at Church Today

I am a church musician. I always hang out before and after services to talk with parishioners. After over eight years in this parish, there are lots of people I care about. There are also new people and medium new people. Today I was talking with a lady who uses a walker. I only know her a little bit. She asked what else I do besides work at the church. I gave her the run down and told her that I write. "What do you write about?" she asked. "Chronic illness," I responded. She said, with just a tad bit of arrogance, "What on earth do you know about chronic illness?" I smiled and took a deep breath, "Well, I have systemic lupus erythematosus with major organ involvement. Of course you can't see that by looking at me. I have had kidney failure, bone marrow failure, congestive heart failure, cerebritis and was given up for dead when I was 51. After 4 years on disability I crawled back to the work force. That's when I came here." She sat in stunned silence. That's OK.

I an see her disability because she uses a walker. She cannot see my disability because it is totally inside. Regardless, please know that 1 in 3 Americans have a chronic illness and that most of these illnesses are invisible. Other people do not know about our invisible illnesses and our invisible struggles. We don't know about theirs. But if you put three random folks in a room, one would have an invisible chronic illness.

We are only alone if we don't talk to one another. You think no one understands. He or she thinks no one understands. If you held hands your isolation would be over, at least a little bit.

Michael Finnegan Begin Again

There was a man named Michael Finnegan
He had whiskers on his chinnegan
Wind blew them off but they grew in again
Poor old Michael Finnegan
Begin again

Several women friends in my life are recreating themselves right now. Some are beginning again because they want to. Others are beginning again because of changes that are beyond their control. One is a teacher who is going to run for political office. One is a professor on medical leave. One is an empty-nester in search of both a job and a new vocation. One is a lawyer who wants to move into the non profit arena. Then there's me.

I am two years from retirement. I am preparing to begin again. My work as a teacher, parish music director, and program director for the Lupus Foundation of Florida all bring me great joy. Some will stay after retirement, others will go. My vision for my life requires new skills. I have found myself more passionate about learning than I have been at any other time in my life.

When my "whiskers grow in again" maybe they will be hot pink, five mile orange, and neon green! One thing is certain, they won't be pastel!