Walking the line

Today is the last day of Crohn’s and Colitis Awareness Week in the US. So I am writing a post today to raise some awareness about what it is like to live with inflammatory bowel disease (IBD). I have been really lucky to have stayed in remission for so long (now 8+ years).

Earlier this week I had a virus in my gut that could have triggered an episode of IBD, as it did almost 13 years ago. I was lucky this time around. Thirteen years ago, I needed to be hospitalized for two weeks because of the flare that the virus brought on in my gut. This week, I recovered my health within just a few days.

I walk on the line between the healthy and the sick. I am in remission, yes, and I can eat many more kinds of foods than I could when I was sick. I can go outside of my home without the fear that I won’t find a bathroom in time. I rarely have pain in my gut anymore, and if I do, it is usually due to gastroparesis, another gastrointestinal condition I have.

I have not been hospitalized for a flare of Crohn’s colitis in over ten years. In these past ten years I have not been confined to my bed for weeks on end nor have I had to worry about malnourishment or elevated liver levels. I can breastfeed my son without worrying about him getting any small dose of immunosuppressants, since I have been off of these meds for almost four years. The fecal calprotectin tests that my doctor orders still show no signs of inflammation in my gut, and I don’t worry about this test, I know what the results will show. I can feel it in my gut.

But those years of illness took a toll on me. More

Throwing away my ideas about saving the world

There was a question that kept surfacing in my consciousness earlier today. It happened in the morning when I took my son into the bathroom so that I could take care of some things. My son is almost 16 months old and he is getting his second molar, along with two other teeth. My dear boy is in a lot of pain.

I lay him on the diaper changing pad. Oh, he did not like that one bit, and he voiced his discontentment. I tried to empathize with him as I was taking off his pants and diaper, and this question came to mind.

“When did I give up on saving the world?”

But my mind had no time to reflect on this question. The next task was giving my son a Tylenol suppository so that he had a chance of getting a nap despite the teething pain. I went to the sink and washed my hands after giving him the suppository, and he started whining and whining. So I started singing, “If you’re happy and you know it, clap your hands.” But he was actually playing with his penis, so I sang, “If you’re happy and you know it, play with your penis…” He looked a bit puzzled for about two seconds, then continued whining.

“When did I give up on saving the world?” I asked myself in a half of an instant, and then went back to tending to my son. I put on a new diaper and clean pants, picked him up and hugged him, and then we looked in the bathroom mirror together.

“Are you ready to take a nap?” I asked him. In the mirror there were two smiling faces. He was shaking his head “no” and I was nodding my head “yes.” I saw my cheeks in his cheeks. He lifted his shirt up so he could see his belly in the mirror. So precious, this little boy.

“It was a long time ago,” I heard my mind say, “When I threw away the idea of saving the world.” Yep, it was. More

Accepting the challenges we’d rather avoid

“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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Self-care on the tough days

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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“What to say to someone who’s sick” – A blog response

Ideally, you would be able to take the time to learn good communication skills (see below) before talking to your sick friend/family member.

But what if you don’t have time to learn good communication skills before visiting or talking to your sick friend/family member?

If you are going to visit a sick friend or family member very soon and you want some ideas about what to say, my suggestion is to focus more on your presence than your words. Your presence speaks volumes. Try to focus on listening to the person with 100% of your being. In the moments that you are with your friend or family member, listening to him or her should seem like the most important thing in your life. If your mind wanders to your “to-do list” or to some concern in your life, catch it, and focus on being there for your friend/family member. If there is an “awkward silence” don’t worry about it. Breathe deeply during the silence and then let your friend or family member know that s/he doesn’t have to say anything, you are there to support him or her in whatever way possible and you are glad just to be there with him or her. If you can’t think of anything to say then be honest, say something like, “I care about you and I’m here for you, even if I don’t know what to say or do.”

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A blog response to “What to say to someone who’s sick,” an article by Bruce Feiler.

I went through hell when I was really sick and in a lot of pain, but it was my own unique hell.

The blogosphere tends to oversimplify the complexity of serious issues with clever titles and tips. Five ways to resolve conflict. Ten ways to be happy. Eleven ways to be unremarkably average. Just read a blog post and your life can be so much better afterwards. But I was surprised to read a clever tip list like this in the New York Times concerning “what to say to someone who’s sick.”

The author, Bruce Feiler, a cancer veteran, wrote two lists with the do’s and don’t’s of communicating with friends and family members who are ill. I have no doubt that Feiler had the best of intentions in writing his article. He went through the hell of cancer and he didn’t want others to have to deal with the same kinds of frustrations he dealt with. But Feiler forgot that his hell was unique and that his preferences as a patient were unique.

Let’s start with his first “don’t” tip, “What can I do to help?” Feiler thinks this question unnecessarily burdens the patient. But that is just his opinion. Personally, I loved when friends asked me this question because I was often in need of help and it was hard for me–Miss super independent–to admit it. When I was severely ill, I frequently needed a ride home from the hospital and I was so glad when someone asked me what they could do to help. “Pick me up,” I would respond. Sometimes I had to take a taxi, if it was, for example at 6am or if I couldn’t find a ride. It meant a world of difference to me to have a friend or family member pick me up instead of taking a taxi. I basked in the care and warmth of my friend/family member the whole way home.

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“Never give up”

“No matter what is going on
Never give up
Develop the heart…”

H.H. the 14th Dalai Lama (to read the rest of the poem, click here)

Earlier this week, someone found this blog by typing in the search terms “severe chronic pelvic pain=want to die.” I don’t know who this person was but I felt deep sorrow when I read those words. I thought about how many others there are out there who feel the same way but did not type in the search terms into Google. It made me determined to do something, even if that person never returns to read my blog. There are a lot of people suffering tremendously from medical conditions like pelvic pain and they can’t really talk about their pain and suffering much with others. I’ve been there. I know it is hard.

I’ve written about the severe depression that I went through in 2001, but I didn’t go into great depth about the details of my story.

As I wrote in the earlier entry, I had just survived a life-threatening episode of Crohn’s colitis and I was living with my family in Indiana. I was on disability and was in a lot of physical pain and discomfort.

The doctors in the hospital had never seen a case like mine before. At first, I was a “mystery of science” patient but careful “Dr. House”-like sleuthing showed that it was inflammatory bowel disease in combination with a virus and a bacteria from antibiotics (c. difficile) that had nearly pulverized my intestines. While I was in the hospital, the doctors said that they had only read of similar cases in the medical literature and that in all those cases the patients were immuno-suppressed. When was the last time that I had had an HIV test, they wanted to know. Would I be willing to have another HIV test?

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Living with uncertainty

Earlier this week I went to my doctor to have my moles checked out. It had been three years since a doctor looked at them. I explained to the doc that I am at high-risk for melanoma cancer because:

1) I lived in Florida during my teenage years and got so burned that my face looked like it had been microwaved,

2) I was on immunosuppressant medicines for 13 years, and

3) My maternal grandparents both had moles that became cancerous, though the moles were removed early (level 1 or 2).

My doctor looked at my back and then asked me to wait as he wanted to consult with a colleague. Some 15 minutes later (good thing I brought a book) she came in and looked at the moles then asked me how long I had had a particularly  large one.

“Många år” (many years) I said in Swedish. She assured me it was fine then. My doctor said that he couldn’t remove all the moles that all of his patients had. We just have to live with some uncertainty. I told him I knew lots about living with uncertainty.

I’ve lived with uncertainty for so long that coping with a long-standing sense of uncertainty has become a part of my way of life. In the five or so years after I was diagnosed with inflammatory bowel disease (1998) I tried to control everything that I could to maintain some semblance of security. I did not want to get sick again so I washed dishes twice or washed my hands many, many times. I don’t like labels, but you could say it was probably some version of obsessive compulsive disorder (OCD).

It took many years of mindfulness practice, therapy and self-awareness to loosen some of the habit patterns that I developed during the years that my illness was most severe (see the article I wrote: Is Your Need for Control Out of Control?). The illness almost killed me and triggered an enormous amount of suffering and I never wanted to go through that again. Strangely enough, I handled acute episodes of illness quite well, even when I was hospitalized and not allowed to eat for weeks at a time.

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