How sick are you?
How healthy are you?
What percent of you is sick?
What percent of you is healthy?

In Full Catastrophe Living, Jon Kabat-Zinn writes, “As long as you are breathing, there is more right with you than there is wrong, no matter how ill or how hopeless you may feel.” When we don’t feel well, we identify as being sick, period. We must guard against this all or nothing thinking. We are never one hundred percent healthy and we are never one hundred percent sick. Health is not an either/or scenario. Rather, health changes from day to day. Health is a continuum. Sometimes we have a hard time seeing that. On her worst days, a dear friend of mine would exclaim, “At least my eyelashes don’t hurt!”

Right this minute you are reading, breathing, your heart is beating, blood is running through your veins, digestion is happening, and so much more. Take inventory. How many things can you find that are right with you this very moment? Every time you feel despair, check in with yourself to discover what is right.

There is more right with me than there is wrong.

From Life Recycled: Creating a New Normal in the Face of Chronic Illness (Release date April 1, 2018)

Baby Steps

“Alice: Would you tell me, please, which way I ought to go from here?
The Cheshire Cat: That depends a good deal on where you want to get to.
Alice: I don't much care where.
The Cheshire Cat: Then it doesn't much matter which way you go.
Alice: ...So long as I get somewhere.
The Cheshire Cat: Oh, you're sure to do that, if only you walk long enough.”
-Lewis Carroll, Alice in Wonderland

We want to get better. We want to go back to our pre-illness self and our pre-illness life. We want to go back to a time when our days were not filled with pills and doctors’ appointments, procedures and blood draws. Since we can’t go back, the only way to go is forward. But where are we going? We are going to do whatever we need to do to live the best life possible. We are going to be sick well.

Goals are great. Goals mean that we have hope. When chronic illness comes to visit, we have a choice. We can hold onto our old goals or we can make new goals. In 2003, the loftiest goal I could imagine was getting out of my pajamas every day or at least changing to clean pajamas by dinner time. I learned that to achieve the goal of getting out of my pajamas, I needed to take a series of small steps, resting after each one. Decide what to wear. Rest. Find the clothes. Rest. Take a shower. Taking a shower was huge. I had to rest for at least an hour. Get dressed. Rest. Be proud of myself. I did it! The first step is always getting started. Every small triumph inspires us to go on.

What new goals do you have now that you have chronic illness? Pick one goal that is achievable. Make it a small goal. Make a list of all the steps you must take to get to the goal. Go back over the list and break each step into smaller steps. Work on just that one goal, one tiny step at a time. Setbacks are not failures. If you have a setback ask yourself what you learned. Then carry on. Give yourself permission to keep on trying. Life with chronic illness is about progress, not perfection.

From Life Recycled: Creating a New Normal in the Face of Chronic Illness Release date April 1, 2018.

Resolutions

Do you make New Year’s resolutions? Do you keep them? Do you tell yourself that this year is going to be different? You are going to lose weight, get fit, get organized, or achieve some other lofty goal? Do you beat yourself up when you fail? Would you like a resolution that really works, one that improves your life daily? I have one for you!

Every day, several times a day, ask yourself, “What can I do to take care of myself right now?” When you are frustrated by limitations on energy and ability, when you are struggling to get through the basic activities of daily living, it’s easy to forget to take care of yourself. When your to do list is longer than you are tall ask yourself what you need to do to take care of yourself. When friends and family make demands on your time and energy ask yourself this question. Write it down. Hang it up where you will see it often. Set an alarm on your watch or phone.

Taking care of yourself is not selfish. Depleting yourself is the thing that is selfish. You cannot pour from an empty cup. You cannot give what you do not have. Remember to put the oxygen mask on yourself before helping others.

What can I do to take care of myself right now?

Visit Linda's website

Medicare Nation

When you are sick, the last thing you want to do is try to figure out your benefits. If you are a caregiver for someone who is older or sick, you may find yourself with the added burden of helping your loved one negotiate the system.

Diane Daniels podcasts about Medicare. Diane helps those on Medicare (the retired and disabled) and those who care for them understand and maximize their benefits. Choosing a Medicare plan provider is confusing in itself. Once you have a plan, understanding and getting your benefits offers new challenges.

I recently had the honor of being interviewed on Diane's podcast Medicare Nation. In recognition of World Lupus Day May 10, Diane included lupus in our interview. Click here to listen to the podcast.

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.

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.

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?