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

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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What is it like to have a Mystery Disease?

By Maureen DeGarmo

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

Minimalism and Illness

By Maureen DeGarmo

I just finished watching Minimalism: A Documentary About the Important Things.

In this film, Joshua Fields Millburn and Ryan Nicodemus tell the story of how they simplified their lives and how that process affected them. Sharing the film around the country brings their message to a great number of people who want to reduce their footprint and live more simply.

Living with a Traumatic Illness causes widespread changes: working, relationships, family dynamics, home upkeep, and how we eat. The longer an illness persists, the more extensive the effects will be. What if simplifying our lives could help us manage our illness?

Here are some ideas for simplifying life, straight from the Minimalism documentary: Continue reading

How to Talk About Your Pain Without Whining

2016-sept-talk-of-pain-without-whining

By Maureen DeGarmo

You’re in pain all the time. Many of your friends are not, and they don’t understand. How do you open up to them without sounding like you’re complaining?

This is a difficult question and one that I have personally struggled to answer. I want to be sure that I don’t alienate my friends by monopolizing their time discussing nothing but my illness. Asking about their life certainly helps balance the conversation, but that does not help me decide what to share about myself.

A recent column by Carolyn Hax, a columnist with the Washington Post, provides some very clear guidelines. She recommends: Continue reading

The 5-D To Do List

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

You don’t feel well. You look around and see things that need to be put away, projects that need work, and reminders that your body has betrayed you. Pain, fatigue, brain fog, lack of stamina, learning to live in your new normal…whatever your symptoms are, they prevent you from accomplishing daily tasks.

Let’s try an exercise.

  • Write (or record) a list of things that you need to do. Include everything that is on your mind: taking your medications, resting, doctor’s appointments, picking up clutter, paying bills, driving the kids, laundry, dishes, cleaning the bathroom, etc.
  • Now, rate your energy level for the day, on a scale of 0-10. Zero would be you cannot even get out of bed that day. A level ten would be how you felt prior to your illness.
  • Next, I want you to prioritize your list, and sort it by these categories:

Continue reading

How Making Tea Changed My Life

By Lisa Mark, C.P.O.

I want to empower you, even if it just means making a cup of tea.

If you are experiencing a Traumatic Illness, then you might be thinking, “I can’t do anything more than be in this one comfort spot on the couch.” But maybe with the guidance of friends, there may be a way for you to participate in life a little bit more than you otherwise could.

When I was sick, an acquaintance told me how she’d coped with the death of her spouse from brain cancer. Continue reading