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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Organizing to De-Stress a Major Illness

2017 July Hazel Guest Post

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:

  • Ask a trusted friend or relative to be your spokesperson…to keep others with a need to know, apprised of your condition.
  • Don’t try to remember everything! Keep a little notebook handy in your pocket (or hung around your neck) to jot down reminders.
  • This is not the time to be beating yourself up for all the things you are not doing.

Read the entire post, here. Thank you, Hazel, for your insight!

 

How to Ask for Help

Lighted sign displaying the word ASK.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

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

Photo of a picnic table in a park

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

Photo of a doctor
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

Woman lying in bed

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

15 Things You Can Do for Your Friend with Chronic Illness

Woman massaging person's hand

  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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What is it like to have a Mystery Disease?

Photo of a Woman

Imagine for a moment that you have the flu, you feel exhausted and achy, and it seems like your symptoms will never end. What if that were true? What if your symptoms didn’t end? This is what it feels like to have a chronic disease.

Now imagine you don’t know what disease you have, and that everyone around you – from doctors to friends and family – doesn’t know how to react because there is no real way to explain your illness. Some people may even doubt that you are really sick. This is what having a mystery disease is like.

Here are some examples of the difference between a diagnosed illness and a disease that has no name: Continue reading

The Day My Child Became My Advocate

Photo of Young Girl

Advocates are all around us. When you have a tribe to advocate for your well-being and safety, it makes even the most serious illness more bearable. The story below is about a nine-year-old girl who thought that it was important to speak up on my behalf. I share it with you so that you can understand that sometimes support comes from the most unexpected sources.

When my older daughter was nine and my younger daughter was four, we took the (for me) brave step of eating out at a nearby family restaurant. Because I was still recovering from my nearly fatal bout of blood poisoning, still had touches of gastroparesis, and was very susceptible to infection from improperly prepared foods, I had one condition to eating out: that everything I ordered needed to be brought to the table steaming hot to ensure that any bacteria had been neutralized.

I ordered fresh orange juice and requested that it be microwaved (I know, I know) and brought to the table hot. The server who took our order agreed to my strange request. My oldest and her dad then went to the salad bar while I stayed at the table with my youngest. It took them a long time to come back to the table; so long, in fact, that I was beginning to worry. When they returned to the table my nine-year-old was frowning and my spouse looked annoyed. Our conversation went something like this.

Me: ‘Something wrong?’

Nine-year-old: starts to speak, looks at her dad, frowns. ‘Nothing.’ Continue reading

How Traumatic Illness Can Change You

Graphic of the word "change"

Pain can change a person, as can other chronic conditions such as overwhelming fatigue, neurological disease, digestive diseases or other disorders.

If you have a chronic condition, then most likely you know what I mean. Think back to before your health began to change. Were you more lighthearted? More patient and understanding with your loved ones? Perhaps you valued spontaneity and adventure in your life, which is now a distant memory.

If you are the care-giver for a loved one with a Traumatic Illness, then you may be on the receiving end of both alterations to your daily life as well as personality changes. You might be required to do more meal prep, more driving or more household management. Your loved one might have a shorter temper. She might yell more than she used to, have lost the ability to express herself or lost her sense of humor.

Although there is no one-size-fits-all solution, here are a few things that can help: Continue reading