Who I Used to Be

By Maureen DeGarmo

There is no doubt that illness changes a person, but are those changes all negative? I have been trying to reconcile my pre-illness self with my current self, and to figure out what I have learned from my journey.

Joy: Joy is a feeling of delight or glee. Experiencing joy uplifts the spirit. Joy can brighten your day, and if you’re lucky it can carry over to the next day. I have a friend who has been battling cancer for several years, and he told me that his goal is to make at least one person laugh every day. But, it’s difficult to find joy when you don’t feel good. It seems to me that my younger self found joy more easily, and more often. I still try to find things that delight me, but I have to make a conscious effort to do so. I try to avoid movies that depress me and say yes to outside activities that will make me laugh. But, it does not seem to come as naturally as it used to.

Achievement: when I was a child, I was an over-achiever: striving to get all A’s in school and making sure that everything I needed to complete got done to very high standards. As a young adult, I was still a perfectionist to some degree, but that deep desire for perfection diminished long ago. Who has the energy? My current stance is that when you find yourself waiting until you have the energy to clean the house, and the perfectionist side of you tells you to wait until you feel good enough to make it perfect, then it will never happen. As we teach in our Illness Warriors Seminar, “Done is Better than Perfect.” My illness has indeed relaxed the achiever side of my personality. In some ways that’s good, but it also feels like my inspiration has decreased along with it.

Spirit: When I was in school, my psychology teacher asked us to list all the assignments that we had completed to earn a particular grade. My teacher was likeable and a good instructor but had a habit of changing the subject quite frequently during class. So, on my grade-requirements list, I included the fact that I was the only person who had the courage to keep a tally of how many times he had interrupted himself during a lecture (he responded to my little stunt with good humor). Little did I know that he had connections at the local newspaper and surprised me with a write-up in the gossip column.

That ‘spirited young woman’ feels like a distant memory. Although I certainly don’t have the energy that I did then, I have learned patience and calm, and to hold my tongue when I am angry or frustrated.

Creative: I used to love to craft, sew and create things. I enjoyed the process of design and seeing the finished result of something I had made. The down-side of crafting is cleaning up the mess, which of course requires more energy than I now have. Instead, I do creative work on my computer, such as PowerPoint design (which does not make a mess).

Sometimes I grieve for the joyful, creative, spirited person I used to be. Sometimes, I am thankful that I have grown. Either way, I recognize that life is not a straight line, but a series of ups and downs.

How has your illness changed you? Have those changes been both negative and positive? What have you learned about yourself?

How I went from Anger to Acceptance of My Illness

Woman holding her head and looking stressed

By Lisa Mark, C.P.O.

It is said that the stages we experience when dealing with a life-changing illness or injury are similar to the stages of grief: Denial, Anger, Bargaining, Depression, and Acceptance.

My illness was so extreme, life-altering, sudden, acute, severe and painful that I skipped the denial stage and went straight into anger. What turned out to be Gastroparesis was at the time a mystery that stumped my doctors, whose responses to me ranged from outright disbelief to hostility. So, yeah, I was angry.

My anger was caused partly by the awful managed-care practitioner I was seeing at the time. He had the ‘Denial’ stage down pat and accused me of lying about my symptoms to hide what he said was the true cause of my illness: Anorexia. Or maybe Bulimia.

But it was also because I was really, really pissed about having gotten sick in the first place.

I was pissed at myself for ignoring my initial symptoms until they became too severe to ignore, and for my weakness in getting sick in the first place.

I was pissed at my managed health practitioner for not believing me when I said I wasn’t making myself throw up.

I was pissed at the ER docs who misdiagnosed my illness as ‘vague stomach upset’ and sent me home with an antacid and order to ‘get some sleep.’

I was pissed at my health plan for providing so few good health care practitioners in my network.

Angry that I had to stop nursing my infant daughter because the medications I was on might cross into my breastmilk and affect her.

Pissed that while I was struggling to get better, my friends were caring for their kids, going on vacation, working and living their lives.

Angry at the cost of the financial and other resources my illness was sucking away from my family.

Angry that the life I’d laid out for myself was not turning out as I’d hoped.

Angry at the lack of acceptance from friends and family members who didn’t believe I was ‘really’ sick.

I had two little kids, aged 5 years and 3 months at the time of my first illness, and they needed me, their mom, to be healthy and available. And I was anything but. I was pissed about that, too.

I just couldn’t accept the fact that I was so sick and unavailable during these critical first years with my kids, a time when my family really needed me to be healthy.

Yeah, I spent a lot of time being pissed. Which made it difficult, if not impossible, for me to heal.

The Turning Point

My friend, one of the few who didn’t abandon me when I needed her most, stopped by to sit with me so my spouse could go to work. I was so sick that I couldn’t be left alone. She sat next to me on my sofa, patiently listening while I ranted and railed about the unfairness of it all. Why me? I kept saying. Why did IIII have to get sick? Why couldn’t it have been any one of a number of other women that I knew?

When I was finished, exhausted and tear-stained, my beautiful friend turned to me and asked me the question that would start me on my journey of acceptance and healing.

She asked me why I thought it would be any fairer if illness had happened to someone else instead of me. In essence, she was asking, ‘Why not you?’

I hate to say it, but she had a point. Why, indeed, not me? Who am I to think I am exempt from this illness?

And it was at that moment that I started to accept my illness, let go of my anger, and heal.

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

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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Self-Sufficiency: Is it a Myth?

By Maureen DeGarmo

Fellow professional organizer Seana Turner of The Seana Method recently wrote a blog post that struck a chord with me, entitled The Myth of Self Sufficiency. She shares why she does not ascribe to a belief in self-sufficiency, and reminds us that “at one point or another, most of us endure periods when our insufficiency is palpable… when our inability to ‘do it all’ smacks us in the face.”

I agree with Seana’s words of wisdom. As a person with a chronic illness, I realize that I cannot do everything that I would like to do. Indeed, sometimes our bodies simply refuse. Read Seana’s entire post, here.

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Top 5 Effects of Chronic Illness

By Maureen DeGarmo

Those of us who battle a chronic illness think differently than others. We filter everything through the difficult lens of “how does this affect my illness?” This is a necessity, not a luxury. Here are the top five ways that illness affects my life.

  1. Direct Side-Effects: When our bodies don’t function well, many parts of our life change. Digestive illnesses make going out to eat awkward or impossible. Someone with chronic back pain may not be able to sit through an entire movie at a theater. A person with a traumatic brain injury may forget a conversation you just had yesterday. These are the direct effects.
  1. Family: Every decision that I make affects my family. For example, a 20-minute drive causes increased vertigo for 1-2 days afterward, but if someone drives me, my symptoms are less severe. Also, for each choice – whether it is fun or productive – another activity must be reduced or eliminated. Therefore, each choice requires careful consideration before making any commitments.

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

Chronic Illness or Traumatic Illness?

By Maureen DeGarmo

A Chronic Illness is one that persists for three months or more, or for a lifetime. It cannot be prevented by a vaccine or cured by medication, nor will it just disappear. A person with a chronic illness needs to constantly manage this condition (sources: MedicineNet.com and The Free Dictionary).

A Traumatic Illness is any type of illness that impacts the person’s life in a way that changes how they live. 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