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.