Welcome to the Illness Warriors Blog

View of ocean with Welcome to Illness WarriorsIf you or a loved one have a critical illness or injury that affects your everyday life, and you struggle to manage your life around your symptoms, then you are an Illness Warrior.

Life can change in an instant. Whether long term or short-term, diagnosed or “mystery disease,” life-changing illnesses or injuries affect the way we live. We draw from our organizing backgrounds and our personal experiences with traumatic illness to help you find ways to cope, adapt to your new normal, manage your to-do list and find support where you need it.

Our blog provides resources for you to use to communicate your needs, tips for setting priorities, suggestions for how to participate in life and ideas for locating support services. If you like what we have to say, then please consider following our blog via email (see that option in the box on this page). We promise that we will never share or sell your email address.

We also offer a free Quick-Start Guide which provides action steps and resources.

Finally, we provide a range of support tools, here.

Thank you for visiting Illness Warriors!

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8 Ways to Avoid Alienating Your Friends During Your Illness

By Maureen DeGarmo

One of the more difficult side effects of a traumatic illness can be alienating your friends. When you are in pain, it’s easy to become isolated and inactive. When you do have a visitor, you may be tempted to unburden all of your accumulated pain and frustration upon your visitor. Here are some tips for sharing your pain without losing the support of your friends.

1) State the facts, clearly and simply. Your family likely already knows the basics, so be brief. Some examples:

  • “My pain back has extended down my leg, and now my leg is tingling.”
  • “The doctor has recommended physical therapy.”
  • “I had an MRI last week, which revealed some nerve damage.”

Continue reading

Laughter & Healing

By Lisa Mark, C.P.O.

When I was in the throes of my illness a friend dropped by a pile of books for me to read. She told me, ‘Read the Bryson book first so you can laugh a little bit. It’ll be good for you.’ I don’t remember if I ignored her or didn’t hear her but I immediately dove into ‘The Color of Water’ by James McBride. This incredible memoir was both sad and serious.  I cried my way through the next few days as I read the book.

I was already spending a lot of time crying and really could have used a laugh. When I finished The Color of Water, I pondered the rest of the books in the pile my friend had left me and settled on Bill Bryson’s ‘A Walk in the Woods,’ a hilarious autobiography detailing the author’s attempt to hike the Appalachian Trail. I laughed my way through the book and found, to my surprise, that although I was still terribly sick, laughter brought a sense of well-being that I hadn’t yet experienced during my illness.

As I travel through my journey with illness, I discover that there are actually centers that research the effect of laughter and psychological well-being on healing. One of them, the Cousins Center for Psychoneuroimmunology at UCLA, was founded by author Norman Cousins after he was diagnosed with a particularly painful type of arthritis. During the course of his illness, he noticed that spending some time watching funny movies improved the way he felt and even enabled him to sleep for a few hours despite debilitating pain.

From the Cousins Center website:

“Science is beginning to uncover some of what happens inside the body in response to laughter. Laughter Researcher[s have] found, in clinical studies, that laughter has positive effects on the neuroendocrine-immune axis by reducing some classic stress hormones.”

There is even such a thing as ‘laughter therapy.’ And truth to that old adage: laughter is the best medicine. So despite illness being no laughing matter, perhaps a bit of laughter can help us all to feel better.

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Lisa’s Story: Gastroparesis

By Maureen DeGarmo and Lisa Mark, C.P.O.

What would you do if suddenly you were unable to eat or drink anything at all? Gastroparesis is a condition that paralyzes the muscles of the stomach and causes them to stop working. This condition makes it difficult or impossible to digest food.

August is Gastroparesis Awareness Month, recognized by the U.S. Department of Health and Human Services on the Health Observances Calendar, which is designed to spread awareness of a variety of health conditions. Continue reading

Organizing to De-Stress a Major Illness

By Hazel Thornton

Illness Warriors would like to introduce our guest blogger, Hazel Thornton of Organized for Life. Hazel has written an article discussing the idea that “the more organized you are, and the simpler your household processes, the less you will worry about things getting done, freeing you to focus your energy on getting well.” The post includes organizing resources and information in four categories:

  • Organizing Your Medical Records
  • Organizing Your Support System
  • Organizing Your Home
  • Organizing Your Self

My favorite tips are: Continue reading

How to Ask for Help During an Illness

By Maureen DeGarmo

When trauma strikes, our lives are flipped upside down. Priorities must change according to the effects of the trauma, whether it is caused by an injury or illness. But, how do Illness Warriors handle everything required of them? Child care, transportation, grocery shopping, meal preparation, doctor’s appointments and so on…the volume of high-priority to do items is very overwhelming. (Did you notice I did not even include laundry, house cleaning or self-care on that list?)

How does the victim of a trauma – or an ongoing traumatic illness – manage everything by themselves? The answer is, they don’t. They either get help, or are forced to let some things slide. What, then, is the best way to get help from friends and family? At Illness Warriors, we like the idea of Continue reading

How to Be Your Own Medical Advocate

By Lisa Mark, C.P.O.

In 1996, I had an illness that nearly killed me. I was exhausted, felt awful, could barely stand up, and had trouble remembering things. Yet I somehow had to find the energy not only to take care of my newborn and 5-year-old, coordinate our upcoming move, consult with doctors and other medical providers on my condition and treatment, and receive treatments that might or might not help me regain my health, but also track our quite substantial medical bills in order to forestall what would have been economic ruin for us.

At the time, most of our medical providers did not file insurance claims, so that task fell to me. One of my clearest memories is sitting on the floor of our home office, surrounded by piles of medical claims that needed to be reconciled. I remember the Continue reading

Happiness is: Eating a Corn Dog in the Park

By Maureen DeGarmo

Recently, I had a visit with a long-time friend, whose mother lives in a nearby residential care home. My friend asked her mom if she would like to go out for a steak dinner for Mother’s Day, as they had done last year. Strangely, her mother said no, she wanted a corn dog. So, my friend and her husband picked up Mom and drove to a park. They sat in the car, ate corn dogs, enjoyed the sunshine and had a visit. It was exactly what Mom wanted, and she was content with how they celebrated Mother’s Day. Continue reading

10 Signs You are at the Wrong Doctor’s Office

By Maureen DeGarmo and Lisa Mark, C.P.O.

Have you ever been at a doctor’s office where you couldn’t wait to escape? Here are 10 signs that you are in the wrong place.
  1. You do not feel heard
  2. You do feel rushed
  3. The visit confuses rather than clarifies
  4. The doctor repeatedly interrupts you
  5. The doctor does not appear to be listening to you
  6. You do not have enough time to discuss everything that concerns you
  7. The doctor pays more attention to the person with you than she does to you
  8. The doctor provides remedies that do not apply to you, such as telling you to stop smoking when you don’t smoke
  9. The doctor is condescending, either in tone or in actions
  10. The doctor does not allow you to share important information that might have changed follow up care and treatment options.
…And how to change it

Continue reading

25 Ways to Take Your Mind Off Your Pain

By Maureen DeGarmo and Lisa Mark, C.P.O.

Chronic pain can be a ruthless dictator, controlling many aspects of our lives. A pervasive and unwanted companion, it forces us to choose between fun activities and responsibilities; between doing what we want to do and what we need to do. Sometimes pain, nausea and exhaustion allows us to do nothing but curl up and ride it out. Other times, diverting attention can make pain a bit more manageable. Here are 25 methods to help manage pain.

  1. Meditate (Find a quiet place, close your eyes, and go to your happy place)
  2. Listen to a relaxation audio recording (some free ones are posted on YouTube)
  3. Start a gratitude list/calendar/bowl
  4. Do a good deed for someone
  5. Talk to a trusted friend
  6. Write in a journal
  7. Stretch
  8. Listen to a comedian
  9. Make someone else laugh
  10. Play with pets
  11. Snuggle the cat
  12. Snuggle a small child or a baby
  13. Watch a favorite movie or show
  14. Listen to a book-on-tape
  15. Read a good book
  16. Write a thank-you note
  17. Listen to music
  18. Sing a favorite song
  19. Peruse old photos
  20. Make cookies for a neighbor
  21. Sit under a tree
  22. Eat lunch outside
  23. Listen to nature sounds
  24. Take a bubble bath
  25. Get a pedicure

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15 Things You Can Do for Your Friend with Chronic Illness

By Maureen DeGarmo and Lisa Mark, C.P.O.

  1. Invite her to an event, even if you know that she cannot come.
  2. Offer to bring dinner and a movie on a Friday night.
  3. Take her kids on an outing.
  4. Ask thoughtful questions, and then listen to the answers.
  5. Refrain from judging.
  6. Refrain from suggesting the latest treatment. She may have already tried it.
  7. Keep her updated on what is happening in your life. Isolation makes the disease worse.
  8. Avoid saying, “I know how you feel.”
  9. Make a specific commitment, such as calling once a week to check in.
  10. If she likes dogs, but doesn’t have one, bring your dog over for a visit.
  11. Or your cat.
  12. Share photos of your latest adventure or your children’s activities.
  13. Better yet, share photos of her children’s activities, especially if she cannot attend.
  14. Ask her if locating resources would be helpful. Then, follow through. The Illness Warrior’s Resource List is a great place to start.
  15. Ask her what she needs you to do, and then do it.

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