Financial Stigma

 

Medical care is expensive. Insurance is expensive. I racked up over a quarter of a million in medical fees over the last decade or so. For four of those years, I was unable to work. My Social Security case went on for 10 years because they lost all the exhibits, nearly a thousand pages! As of this writing, I am in the Medicare Gap , formerly known as the donut hole. Tier 3 meds are now carrying a $180 a month co-pay. The circus starts again on January 1 when I meed the deductible. 

Financial stigma includes:

• Having to make difficult choices and ration care
• Inability to contribute to household income
• Draining household income
• Relying on charity or government assistance
• Loss of self-esteem
• Food and housing insecurity
• Ruined credit

 

Begin Again

After a long hiatus from the chronic illness world, I am compelled to write again. Despite endless medical appointments, medications, and random symptoms, I was happily trying to live in the land of the well. Twenty years after diagnosis, I am making another beginning. Yes, I am still working, but I am also writing. Today, I resurrect this blog! 

My third published book is a simple series of day by day meditations addressing the many challenges that we, the chronic illness community, face. If you have Kindle Unlimited, you can read for free! Life Recycled: Creating a New Normal in the Face of Chronic Illness. 

Going Natural All the Way

Typically, people who are diagnosed with chronic illnesses turn to diet and supplements, hoping to avoid the potential toxic side effects of medications. Sometimes that works. Often this approach does not work. While “going natural” may improve our condition, “going natural” may not be enough.

In my experience, “going natural” for many people means eschewing medication, changing diet, eating clean or going organic, and taking supplements. What many people fail to recognize is that endocrine disruptors are everywhere in our lives.

Endo what? The endocrine system is made up of glands that release hormones. Hormones are chemical messengers. Think insulin, estrogen, progesterone, etc. The chemical messengers, hormones, bind to specific sites in the body telling those sites to do their job. Endocrine disruptors are human made chemicals that mimic hormones so closely that they bind to those sites, preventing the organ from doing its job.

How do endocrine disruptors get into our bodies? Endocrine disruptors enter through the air we breathe, things we ingest, hygiene and cleaning products. We can’t control the air. We have some control over what we eat and drink. But hygiene and cleaning products are hidden sources of endocrine disruptors.

Think for a minute. There are hormone patches for birth control, pain management and tobacco cessation. All of these are absorbed through the skin. What are you putting on YOUR skin every day in the form of soaps, lotions, and other cosmetics? The biology is beyond the scope of this book, but if you want to reduce your exposure please visit the Environmental Working Group (www.ewg.org) and their Skin Deep data base.

(c) Linda Ruescher 2018

From Life Recycled: Creating a New Normal in the Face of Chronic Illness to be released in April 2018. 

Do you have a living will, advanced directives or a health care surrogate? Making legal plans for possible future events is one way that you can make sure your wishes are carried out if you are unable to speak or advocate for yourself.

“Five Wishes is America’s most popular living will because it’s written in everyday language and helps people express their wishes in areas that matter most — the personal and spiritual in addition to the medical and legal.

It also helps you describe what good care means to you, whether you are seriously ill or not. It allows your caregiver to know exactly what you want. Completing Five Wishes is a gift to your family, friends and your doctor because it keeps them out of the difficult position of having to guess what kind of treatment you want or don’t want. Families also use Five Wishes to help start and guide family conversations about care in times of serious illness.

Five Wishes is helpful for all adults – everyone over 18 years old – and anyone can start the conversation within a family. Sometimes it begins with grandparents and other times it is the younger family members who bring up the topic. Regardless of your age, you can bring this gift to your family.”

The first wish is about who you want to make medical decisions for you if you cannot do so yourself. This wish includes a clear description of responsibilities for your health agent.

The second wish examines what kind of care you do or do not want and under what circumstances.

The third wish discusses how comfortable you want to be. This wish goes beyond medication to consider other comforts like favorite music, loved ones around your bedside, being kept clean and much more.

The fourth wish considers how you want to be treated by other people. For example, do you want members of your faith community to be around you and pray for you? Do you want someone to hold your hand and speak softly to you even if you appear to be unresponsive?

The fifth wish concerns what you want your loved ones to know about your death and funeral or services. Do you want a memorial service of some kind? What would you like included? Who would you like to have speak?

A legal document like Five Wishes, which is legal in most states, assures that you remain in control of your health and your health care, not only at the end of life, but also in the event you are temporarily incapacitated. By making your wishes known in a legal document, you prevent your family from having to interpret what they each think you would want, and so they will not have to fight over decisions. This is a gift for you and your family.

Five Wishes is available from www.agingwithdignity.org.

From Life Recycled: Creating a New Normal in the Face of Chronic Illness (c) Linda Ruescher to be released in April 2018.

As I was being wheeled from the ambulance to the emergency room, my friend looked down and admonished me, “If only you didn’t smoke, you would not be here now.” For a moment, I bought into the blame. Soon, I would find out that the chest pains and shortness of breath were the result of my immune cells killing off red blood cells, inflammation in my heart and fluid in my lungs.

When I got home, I added my own unique version of blame. My condition was my fault because I didn’t take good care of myself. Like many of us, I headed off to the health food store to find a natural way to get better. I bought the book Prescription for Nutritional Healing and hunkered down to make a plan. But there were no answers there for me. I reflected on my life and lifestyle looking for clues, looking for somewhere to lay the blame.

If my condition was not caused by smoking and was not caused by lifestyle, then some relatives surely donated faulty genes. I went hunting in the medical history of the family tree. Nothing.

Why me? What caused this? Could my disease have been prevented? Is the universe punishing me for not being good enough? We try desperately to make sense out of the unfathomable. We can languish in the quicksand of why for the rest of our lives. Struggling in quicksand takes a lot of energy. Sooner or later you can struggle no more. We don’t have energy to spare.

Do your searching and when you are done, let it go. Whether you are ill because of something you did or did not do, whether you inherited bad genes, or whether you believe this is some kind of divine retribution does not matter in the end. You have what you have. I have what I have. What matters is what we do right now.

The question isn’t why, it’s what’s next!

(c) Linda Ruescher 2018 from Life Recycled: Creating a New Normal in the Face of Chronic Illness (to be released April 2018)

I have yet to run into the person who says, “Goody! I get to take more pills every day for the rest of my life!” If you find that person, introduce me.
• Every pill
• Every treatment
• Every test
• Every medical appointment
…is a reminder that we are sick.

When you are prescribed a new medication do you find yourself reading the caution insert? Do you head over to Google? Do you wonder if you are going to be the lucky one who gets the side effects? I used to mentally rehearse a litany of side effects for each pill I swallowed. This one can cause lymphoma and low platelets. The next one can cause uncontrollable bleeding. The third can cause a bevy of things from diabetes, to cataracts, to thinning bones. I stopped the one that can build up on your retina and make you go blind.

We can change our relationship with medications by changing what we think. I cried when I went on chemotherapy. Years later, in a period of remission, I cried when my doctor considered taking me off chemotherapy! What made the difference? I embraced the good things the medication can do. I replaced the litany of negative side effects with a litany of knowledge and gratitude.

Before taking the first pill, I say this aloud, “I am thankful that I live in a time and place where there are smart doctors and scientists who figured out medicines that can help me."

Old Linda: This pill can cause lymphoma. What if I get lymphoma?
New Linda: This pill allows me to keep my own kidneys and avoid dialysis or a transplant.

Old Linda: This pill can cause blindness.
New Linda: This pill helps prevent flares. If I have my eyes checked I can stop if there are problems.

Old Linda: This pill can cause osteoporosis, cataracts, high blood pressure and more.
New Linda: This pill prevents my spleen from eating my red blood cells. I can monitor side effects.

Old Linda: This pill can cause uncontrolled bleeding.
New Linda: This pill will prevent another blood clot in my lungs. I can check my blood monthly and adjust the dose.

What script will you write for yourself? How will you reframe your relationship with medication?

I embrace my medications with knowledge and gratefulness.

(c) 2018 Linda Ruescher from Life Recycled: Creating a New Normal in the Face of Chronic Illness. Release date April 2018.

The doctor stood at the foot of my hospital bed. After fourteen long days in the hospital I had a diagnosis. He said, “You have lupus. Do you know what that is?” I had no idea. I mumbled something about knowing a lady with lupus. She was tired a lot and had to stay out of the sun. I felt…nothing at all. I was numb. I couldn’t rally a single brain cell to ask a coherent question.

A friend gave me a book, Lupus: The First Year. The book sat, unopened and face down on the table for a month. I could not bring myself to look at the cover much less read anything. I had questions. I wanted to know but was simultaneously terrified to know what my life would be like going forward. By the time I saw the doctor again, I had three burning questions. Will this kill me? Is it progressive? Will I lose my independence? His answer was the same for every question. “We don’t know.”

Chronic illnesses are often unpredictable. Symptoms may come and go. Often, these illnesses take years to diagnose. When we finally have a diagnosis, we think, “Now that there is a name for what’s wrong with me, we can fix it.” But the relief of having a name for what’s wrong fades as we learn that there are seldom answers to our own burning questions.

Fifteen years later, I posted an infographic on my Facebook page. “29 out of 100 patients will die from complications of lupus.” A newly diagnosed person saw that infographic. She berated me for scaring her with that post. I would have been scared too. Ignoring the facts won’t make them go away. You have a chronic illness. Whether you know about it or not, you still have a chronic illness. But in the end, knowing is better than not knowing. Because I know my risks, I can take action to mitigate those risks. You can too.

Even if I am afraid, I will continue to learn about my chronic illness.
(c) Linda Ruescher 2018

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

They don’t get it. No matter how many times and how many ways you explain what you feel, your lover, spouse, family, friends and acquaintances don’t get it. They never will get it because your condition is your lived experience not theirs. They can empathize. They might sympathize. But they can’t know your physical and emotional experience of disease.

Think about this please. If I told you something tasted like chocolate but you never tasted chocolate, how would you know what I was talking about? If I told you something smelled like roses but you never smelled a rose before, how would you know what I was talking about? You would only understand if you had the experience of tasting chocolate or smelling a rose. It is the same with disease.

Why do we keep trying? When we try to make others understand our experience we are often trying to make sense out of our situation. We are trying to validate our experience. We want others to know that it’s hard living in our bodies. Over time, our attempts to make others ‘get it’ chip away at our relationships. The disease dominates every conversation. More and more we see the world through the lens of disease. The elusive understanding that we so desperately seek escapes as we drive people away by our litany of symptoms and complaints.

Only when we become aware of what we are doing can we take steps to change. Accept that others may never ‘get it’ when it comes to your health. Once you have explained your condition, move on. Find other things to talk about. Find other things to think about. You are not your disease.
How much room do I give disease in my life and relationships?

(c) Linda Ruescher excerpt from Life Recycled: Creating a New Normal in the Face of Chronic Illness available on April 1, 2018

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?

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.

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.

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!

How Virginia’s Attorney General Would Turn Thousands Of High School Students Into Felony Sex Offenders

How Virginia’s Attorney General Would Turn Thousands Of High School Students Into Felony Sex Offenders