The Day My Child Became My Advocate

By Lisa Mark, C.P.O.

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

Why The Cane is Our Friend

By Maureen DeGarmo

My parents grew up in the Great Depression. For them, self-reliance was very important, and they avoided anything that might diminish their sense of independence. Using a cane was one symbol of declining independence.

I feel just the opposite. For me, a cane is a great communicator. It is a silent, tangible signal that changes the way others react to me in public, and therefore I do not have to actually warn people of my tenuous balance.

It says:

  • “Don’t knock me over.”
  • “Don’t expect me to move quickly.”
  • “Something is not working properly.”
  • “I might not react as you would expect others to react.”

A while back, I was in a store with my cane. Continue reading

Getting Help When Your Family Isn’t Available

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

Traumatic Illness can cause symptoms ranging from mild to severe, with varying consequences. Symptoms such as pain, fatigue, loss of cognitive functioning or lack of mobility require different types of support. But, what do you do when your family cannot provide that support?

Perhaps you live far from family, or they’re unable to assist. Perhaps you live alone. Where, then, do you reach out for support? 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

8 Shortcuts to Getting Dinner on the Table

By Maureen DeGarmo

There are many different ways to stay organized, but, when you’re ill, the task of creating new solutions can be difficult. Also, doing things differently is sometimes easier to just start than to accept why it is necessary (credit for that thought goes to Sue West, an Organizing Coach in Amherst, NH).

One practical way to reduce stress is by simplifying meal planning. Here are some ideas: Continue reading

What is The Difference Between Accepting and Giving Up?

By Maureen DeGarmo

What is the difference between accepting and giving up? This can be a tough distinction for those who must bear a chronic illness, so let’s discuss it a bit. Start by identifying the things which cannot be changed.

For me, the fact that I have chronic vertigo will not change. I don’t have to like it, but accepting it will help me to create adaptations for my life. On the other hand, some things can be changed, Continue reading

When Your Body Just Won’t

Woman with hair covering her eyes

By Lisa Mark, C.P.O.

I was raised to believe that if there is a will, there is a way. This outlook enabled me to support myself through college, to accept a job working in high tech, about which I knew nothing, to advocate for my older daughter’s medical needs when she was a baby (while having a managed care medical plan that was paid for NOT treating her), and to start and run my own business despite not having a clue what I was doing. I’ve always been a bit stubborn, a bit strong-willed, and this outlook defined my life. For me, I had the will, and therefore the way to accomplish what I needed to do.

But as far as my body is concerned, where there is a will no longer means there is a way. Continue reading