Ten years later

29 Apr 2013 9 Comments

by Erica in Crohn's disease, Inflammatory bowel disease, Mind-body medicine, Mindfulness, Ulcerative colitis Tags: , , ,

Almost exactly ten years ago, I was in the hospital for a flare of Crohn’s colitis. On May 4th I will celebrate ten years of being Crohn’s-hospitalization free.

When I think back on that time of my life and see images of the past, my eyes well up with tears. My life seemed to be in pieces so much of the time. But paradoxically, those years were also rich with love, joy and compassion. People were there for me in amazing ways. I was there for me in ways I never thought I could be.

I took nothing for granted. Every morsel of food that I ate was a treasure. Sleeping through the night was a gift. Just feeling the energy to do what healthy people did would make my day.

I haven’t forgotten what it was like to be a person with a disability. I haven’t forgotten the mortal fear of death or writhing in pain with no hope of relief. I haven’t forgotten the debilitation nor the emaciation that I experienced. There were weeks of being starved by doctors, months of eating baby food, and years of not knowing if I could plan anything in my life without a whisper of fear in the back of my mind saying, “But you could get sick again.”

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Birthing the unknown

24 Mar 2012 3 Comments

by Erica in Anxiety, Awareness, Buddhism, Chronic pelvic pain, Mindfulness, Pregnancy, Trauma Tags: ,

The day finally came. After over 280 days of nourishing the growing baby in my belly, the time came for the inception of his passage into the world.

The beginning of my baby’s passage into the world was marked by the trickle of amniotic fluid out of my body and onto my bed. My water broke shortly after 11pm on Monday, March 12. I was not having regular contractions, only weak Braxton Hicks-type contractions.

We called the delivery ward and a nurse invited us to come in to check on the baby’s status. We gathered the bags we packed for the hospital, just in case, and we headed for the hospital. I continued to lose amniotic fluid, but I noticed it was stained with meconium, the baby’s first bowel movement. At one point I stood up in the examination room and a contraction pushed a gush of amniotic fluid out of me and onto my socks and the floor. I pointed out the greenish color and the doctor in the room said we would be staying at the hospital, instead of going home and coming back in the morning, which would have been the case if meconium was not staining the amniotic fluid.

At around 2am, the hospital personnel showed us to our room in the delivery ward. We were exhausted, and yet it was very difficult for us to sleep in a hospital room. I’m a light sleeper. The clock made really loud sounds, the bed was uncomfortable, and then there were the blood-curdling screams coming from a woman in the throes of labor next door. I slept about 20 minutes in total. My partner slept perhaps an hour or two. I was not hooked up to any equipment to monitor the baby. There was essentially no reason for us to be there.
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Fear is a guest

29 Feb 2012 3 Comments

by Erica in Anxiety, Awareness, Buddhism, Chronic illness, Coping, Mindfulness, Poetry, Pregnancy, Trauma Tags: , ,

The Guest House

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.
~ Jalal al-din Rumi

My grandfather used to cite a Yiddish proverb about guests. The English translation was something like, “Fish and guests begin to stink up the house after two weeks.” I’d like to be able to openly welcome the guest of fear whenever it appears on my doorstep, but sometimes it seems like it takes over the “house” of my mind and I feel paralyzed by its power.
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The meaning of pain

08 Jan 2012 2 Comments

by Erica in Chronic pain, Chronic pelvic pain, Coping, Mind-body medicine, Mindfulness, New meanings, Pregnancy Tags: , ,

The other night I started to have extreme pain in my abdomen. I couldn’t find a comfortable sitting or lying position and walking was out of the question. I knew that I was not having labor contractions because those are short-lived and I was experiencing near-constant pain. I started to wonder if the pain meant something terrible was happening in my uterus, for example, if my placenta was becoming detached. And then I decided to clear my mind of what the pain could “mean” and to really focus on my body.

With mindful attention, I felt that the pain was not in my uterus, it seemed to be behind my uterus. I decided to experiment with more positions, including some Yoga poses. When I went on my hands and knees, I felt immediate relief, and then the cause of the pain was clear to me. A lot of gas was caught in my squished and shortened intestines (my colon was surgically removed in 2002). I remembered that I’ve felt similar pain during colonoscopy procedures in which air is pumped into the intestines (to ensure the scope does not puncture them). (I usually choose not to be sedated during these procedures.)

I had to temporarily let go of my drive to make meaning of the pain in order to discover the actual cause of my pain, and subsequent relief.
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Accepting the challenges we’d rather avoid

31 Dec 2011 3 Comments

by Erica in Anxiety, Awareness, Chronic illness, Chronic pain, Chronic pelvic pain, Compassion, Coping, Crohn's disease, Pregnancy, Trauma, Ulcerative colitis Tags: , , ,

“A further sign of health is that we don’t become undone by fear and trembling, but we take it as a message that it’s time to stop struggling and look directly at what’s threatening us.” ~ Pema Chödrön

“The cave you fear to enter holds the treasure you seek.” ~ Joseph Campbell

It’s December 31st and I have decided on but one aspiration for the New Year: to see difficult feelings and situations as opportunities to learn about myself and go beyond my comfort zone; in other words, to grow.

It’s easier to stay in the comfort zone and distract myself with projects and leisure activities, and yet I know that staying in the comfort zone of distractions and self-delusion contributes to a sense of complacency, of doing the same things again and again and expecting different results (the definition of insanity for some people).

No matter how much I might wish for things to be otherwise, there will always be challenges in my life. I will give birth to a baby boy in 2012. There’s no easy way to deliver a baby or to adjust to being a new parent. And pregnancy has not been easy since I’ve had symphysis pubis dysfunction and restless leg syndrome among other pregnancy-related ailments.

For many women, pregnancy is the first major physical challenge they face in their lives. For me, pregnancy is the first major physical challenge that I willingly chose to undergo. After years of living with chronic illness and pain, I have developed a “toolbox” of coping strategies, learned to navigate medical systems, and learned to advocate for myself. I know where to find credible medical information on the Internet. I know how to make sense of contradictory medical opinions. And I know how to take care of myself when I feel like crap. So I’m applying what I learned from living with Crohn’s colitis and chronic pain, but pregnancy still challenges me.
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The one thing I like about pain

05 Nov 2011 1 Comment

by Erica in Awareness, Chronic pain, Chronic pelvic pain, Coping Tags: , ,

Just to be clear, I’m not a masochist or a sadist or anything like that. I curse as much as the next guy/gal when I have high levels of pain. But I also see that pain has a redeeming feature: it pushes me to shut off the never-ending discourse in my mind and listen to my body, if only for seconds at a time.

When last I wrote, I was sick with a chest cold. It took a month for my body to fight that dreadful cold virus, and I thank my lucky stars I didn’t get bronchitis. I wrote that I couldn’t take any meds for the cold virus. Now here is the reason:

I’m pregnant!

Today marks five months exactly that I have been on the journey of being pregnant. It is a wonderful and challenging journey. It seems that just about every week I have another pregnancy-related ailment with which to contend. About a month ago I started to have a lot of pain in my butt. It was keeping me from getting a good night’s sleep and the intensity had me almost in tears. I suspected it could be sacroiliac joint dysfunction so I visited my physical therapist. She confirmed my suspicion and gave me some tips for reducing the pain: walking like Charlie Chaplin, sleeping with three (yes three) pillows between my knees, and sitting with my knees far apart. Within a few days, the pain subsided substantially, and I am really thankful for that, but I’m also thankful for being highly attuned to my body because of the pain.

How often do we really sink into the everyday sensations of sitting, standing, walking, and rolling in or out of bed? I have practiced mindfulness meditation for over a decade and yet I am often not present to the minute sensations that occur while I’m carrying out these basic movements. When the sacroiliac joint pain was intense, I was fully aware of every slight feeling involved in each movement: lifting a foot, the shift of weight from one foot to the other, balancing, swinging my legs off the bed and touching the soles of my feet to the floor, and the “apex” of sitting in which I let go and trust that the couch or chair would support my bottom. How often do I take these movements for granted?
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Self-care on the tough days

18 Aug 2011 2 Comments

by Erica in Cancer, Chronic illness, Chronic pain, Compassion, Coping, Crohn's disease, Rheumatoid arthritis, Ulcerative colitis Tags: , ,

I really like Darlene Cohen’s description of “down ‘n’ dirty comfort” on the days in which you’ve hit your limit. Cohen lived with painful rheumatoid arthritis for many years, and unfortunately she is no longer with us. She died from cancer earlier this year. She knew what it was like to hit bottom, and she had some wonderful ideas about what to do about it. Cohen wrote in “Turning Suffering Inside Out: A Zen Approach to Living with Physical and Emotional Pain:”

Even though it’s an ideal time to “embrace the suffering” or learn to “dance with disaster,” you don’t care. Furthermore, you don’t care that you don’t care. You’ve had it with trying to expand your consciousness. You hate your life and everybody in it. Nobody else cares; why should you? You’re at the end of your rope. It’s time for down ‘n’ dirty comfort. What you need is whatever will get you through the next few hours. (p. 36)

Now, I’m a big fan of reframing, of seeing the lessons in our suffering that help us to develop more wisdom, compassion, and love. But I think that on the days in which we feel most frustrated and downtrodden, we find our greatest compassion in our compassionate actions toward ourselves. If it means pampering ourselves for the day, then so be it. Cohen wrote that when we feel this crappy, we can “start with a refuge, a place to which to retreat when you can’t cope–just to find out what relief feels like.”

She advised us to write a list of activities that can help us feel like we have a refuge:
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