29 Apr 2013
in Crohn's disease, Inflammatory bowel disease, Mind-body medicine, Mindfulness, Ulcerative colitis
Tags: Crohn's disease, Inflammatory bowel disease, Mindfulness, Ulcerative colitis
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.”
31 Dec 2011
in Anxiety, Awareness, Chronic illness, Chronic pain, Chronic pelvic pain, Compassion, Coping, Crohn's disease, Pregnancy, Trauma, Ulcerative colitis
Tags: Chronic illness, Chronic pain, Coping, Trauma
“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.
18 Aug 2011
in Cancer, Chronic illness, Chronic pain, Compassion, Coping, Crohn's disease, Rheumatoid arthritis, Ulcerative colitis
Tags: Coping with illness, Darlene Cohen, Inflammatory bowel disease
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:
10 Jul 2011
in Anxiety, Chronic illness, Chronic pain, Crohn's disease, Inflammatory bowel disease, Mind-body medicine, Mindfulness, Trauma, Ulcerative colitis
Tags: Chronic illness, Chronic pain, coping with anxiety, Mindfulness
Before I had a chronic illness the situations in my life that triggered the most anxiety were going on dates, difficulties in relationships, and taking academic exams. Back in those days, one of my closest friends in college used to call me “the Big Easy” (and no, I was not promiscuous!). I was really easygoing and it took a lot to unnerve me. Starting at the age of 24, chronic illness and pain altered my nervous system in a way that made me much more susceptible to chronic anxiety.
The first time chronic anxiety hit me hard was in 1999, about a year after I had first been diagnosed with inflammatory bowel disease (IBD). I re-washed dishes after they had been through the dishwasher because I was scared that there might be some bacteria left on the dishes that would trigger another flare. I knew that my fears were irrational and yet it was so difficult to stop my behaviors. So I sought help from a counselor.
The counselor helped me see that I was trying desperately to control my circumstances. The flares of IBD that I had experienced scared me and I wanted to prevent them in any way possible. But my mind had made the error of thinking that doing things like rewashing dishes would somehow protect me from future flares of IBD. The corticosteroids that I took during that time did not help as they exacerbated every emotion I felt and made me jumpy.
In 2000, I visited Plum Village, a Buddhist monastery and meditation practice center in the south of France. You can read about my experience here. It was there that I experienced a deep sense of inner peace and learned some wonderful techniques for coping with my anxiety. The practice of mindfulness meditation helped me to see my fears more clearly. I saw how much I feared losing control, and one day I wrote the following in my journal:
12 Jun 2011
in Awareness, Buddhism, Chronic illness, Chronic pain, Chronic pelvic pain, Compassion, Coping, Crohn's disease, Death, Depression, determination, Inflammatory bowel disease, Mental health, Mindfulness, Ulcerative colitis
Tags: Buddhism, Crohn's disease, Depression, Inflammatory bowel disease, Mindfulness, Ulcerative colitis
“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?
04 Jun 2011
in Awareness, Buddhism, Cancer, Chronic illness, Chronic pain, Compassion, Coping, Crohn's disease, Inflammatory bowel disease, Mental health, Mindfulness, Ulcerative colitis
Tags: Buddhism, Chronic illness, Chronic pain, Coping with chronic disease, Crohn's disease, Inflammatory bowel disease, Mindfulness, Ulcerative colitis, 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.
18 May 2011
in Awareness, Chronic illness, Chronic pelvic pain, Coping, Crohn's disease, Inflammatory bowel disease, Mindfulness, New meanings, Ulcerative colitis
Tags: chronic fatigue syndrome, Coping with chronic disease, Crohn's disease, immune dysfunction syndrome, Inflammatory bowel disease, Myalgic encephalomyelitis, Ulcerative colitis
In this interview, Irina Almgren of the “Open Questions Podcast” asked questions to me and Andy McClellan about how we live with chronic illness. We discussed the obstacles of living in a society that pushes people to push themselves and ignore their bodies. We also talked about how the hyper-emphasis on “doing” in our society–on being productive all the time–meant that severe illness triggered crises of identity because we could no longer keep up at the insane pace that most of society runs at. At the same time, in letting go of “doing,” we found so much more about who we really are through “being.” In time, both Andy and I came to see our challenges in living with illness as opportunities to develop self-awareness, compassion and love.
Andy lives with chronic fatigue syndrome and writes an amazing blog called The Long and Winding Road.
You can listen to Part 1 here: OQ5: Living well with a chronic illness, Part 1 (download it) and Part 2 here: OQ6: Living well with a chronic illness, Part 2 (download it).
06 May 2011
in Chronic illness, Crohn's disease, determination, New meanings, Ulcerative colitis
Tags: Crohn's disease, Inflammatory bowel disease, love, Ulcerative colitis
Two days ago I celebrated eight years of being hospital-free. As I wrote on my Facebook status update:
On May 3, 2003, I walked out of Georgetown University Hospital with a determination never to be admitted again as an IBD patient. I had been a “frequent flyer” at that hospital for almost 3 years due to severe Crohn’s colitis flares. Today I celebrate 8 years of being hospital-free. To my Crohn’s buddies and friends with health challenges: “Nothing is impossible” ~ Christopher Reeve
It is amazing to me that I actually was never admitted again to the hospital for IBD (inflammatory bowel disease). I was so terribly sick! I’ve written about the different causes and conditions that I believe helped me to recover, but the truth is, I really don’t know for sure. I found some combination of health habits that worked for me. And for almost exactly six years now I have been free of Crohn’s colitis. There are other milestones too: for almost three years I have been free of sciatica pain; for more than three years I have been free of migraine headaches; and for almost one month I have been free of chronic UTIs (gotta start somewhere!).
How do I celebrate such milestones? By eating lots of vegetables, fruits, and high-fiber foods! By thanking everyone who has been with me on my healing journeys. By appreciating the present moment. And by reflecting, at least a little bit, on what illness and pain have taught me.
I read through some of my past journal entries and almost exactly six years ago, I wrote the following in my journal:
Kitten Snickers (the pet name my sister gave to Crohn’s colitis) has taught me about life and death, as I have almost died from severe episodes. But Kitten Snickers has also taught me about love. When there was nothing else for me to hold onto — when I was floating in the moment to moment uncertainty of whether I would survive — when I was overwhelmed by pain and discomfort and feeling trapped — I kept coming back to the experience of love. It was something of a calling. A calling to be right there in the thick of the suffering and to make space within it. And the more I could rest there the more space there was. Sometimes I would close my eyes and feel like there was so much space in my body that I had expanded past the outskirts of the galaxy into nebulae. Only it no longer felt like me. It was the more than me that is love.
13 Mar 2011
in Awareness, Buddhism, Chronic illness, Crohn's disease, Discipline, Meditation, Mindfulness, Qigong, Ulcerative colitis
Tags: discipline, Meditation, Mindfulness, Qigong
This excerpt is from my latest post on Elephant Journal:
In January 2001 I almost died from a severe flare of inflammatory bowel disease (Crohn’s colitis). While I was in the hospital, my father brought me a book about qigong. He showed me how to do a standing meditation pose and I tried to do it every day for 30 seconds.
When I was well enough to live on my own again, I lived in Washington, DC, where two dharma teachers at the Mindfulness Practice Center of Fairfax encouraged me to practice qigong. One of them gave me a book and a video and suggested that I try to practice qigong every day for 100 days. So on March 9, 2001 I committed to practicing qigong every day for 100 days.
As of today, I have practiced qigong every day for more than 3,650 days…
Read the whole post here: Discipline is Freedom.
26 Feb 2011
in Awareness, Buddhism, Cancer, Chronic illness, Chronic pain, Chronic pelvic pain, Compassion, Coping, Crohn's disease, Depression, New meanings, Patience, Ulcerative colitis, Uncategorized
Tags: Chronic pain, Crohn's disease, Inflammatory bowel disease, migraines, pelvic pain, Ulcerative colitis
Patience is a spiritual practice.
Recently I wrote about patience as one of the gifts of illness. As difficult as it is to bear the pain, the discomfort, the distress and the deprivation, we grow through these kinds of experiences. I know, it is hard as hell sometimes. We want ease. We want rest. We want peace of mind. We are human, of course we do! And yet our plight is not without fruit. We stretch our patience muscle in ways we never thought possible. We learn about ourselves.
There have been times in my life in which I was not allowed to eat anything at all. The doctors in the hospital forbade me from eating food for weeks at a time because any food at all could have triggered my severely inflamed colon to burst. They decided to give me intravenous food, parenteral nutrition. But I had tiny little veins and the radiologists had a heck of a time getting the “main line” (or pic line) into my arm. I remember one time it took 8 attempts to get the line in. Each attempt was so painful, near unbearable, I wanted to give up. My upper arms were lined with black and blue marks. And yet I made it through that horrific procedure several times.
Then there were the baby food years. My intestines were so sensitive, even after my colon was surgically removed, that I ate only the blandest of foods: rice, pasta, eggs, baby food, tofu, and a little fish (I did not know at the time that I could not tolerate gluten and soy!) for years. Vegetables, beans, lentils — all of those foods were way too fibrous for my sensitive gut. So I ate baby food veggies, maybe one jar a day. There were a few months in which I juiced carrots and beets (and now I can’t tolerate carrots or beets). My physicians encouraged me to drink Ensure, which is a protein drink. I drank hundreds of cans of Ensure and held my nose while it went down. The smell of Ensure now makes me feel nauseous!
There were so many challenges to living with Crohn’s colitis. Sometimes I didn’t make it to the bathroom in time. Sometimes my bowel movements sounded like explosions in public bathrooms, while my colleagues were also taking care of business. I had to explain to friends and colleagues why I couldn’t eat so many foods. I had to ask for special foods. I struggled to get a good night’s sleep and worked full days after tossing and turning in pain throughout the night. There was a year in which I did not sleep through the night on any of the 365 nights. There were years in which I meandered between depression and anxiety. Was it easy? No! Did those experiences change me? Absolutely!