Thursday, February 15, 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)
Thursday, February 8, 2018
• 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.
Thursday, February 1, 2018
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.
Thursday, January 25, 2018
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
Saturday, January 20, 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)
Monday, January 15, 2018
“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.
Friday, January 5, 2018
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?
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