Becoming my own advocate

I haven’t written in this blog for almost three years, I know. Well, a lot has happened in that time! But I’ll spare you the details.

In these past few years I have learned a lot about myself and how my mind works. I have learned that I’m neurodivergent, that is, that my brain is wired a bit differently from the brains of people who are neurotypical. And part of my neurodivergence includes challenges with communication. It takes me longer than neurotypical people to process verbal information. It takes me longer to find my words and articulate what I want to say verbally. As a child, I was also extremely shy and had some social and sensory challenges. And those challenges have continued, to some degree, into my adulthood.

I remember the days in which I was nervous about questioning my doctors’ decisions. I went along with almost all of their decisions. I felt anxious about confronting them about decisions I was uneasy with. And I even put off calling them when I was experiencing a Crohn’s flare. It was extremely difficult for me to find my voice, and advocate for myself.

There were a few turning points in which I realized I had to find a way to befriend my anxiety and tell the doctors what was on my mind.

The first turning point happened in December of 2001. I was in the hospital for a severe Crohn’s colitis flare. My colon had expanded, signifying “toxic megacolon,” which is potentially life-threatening, and I was not allowed to eat or drink anything. At some point, the doctors thought it was okay for me to start eating again. I felt my gut and I knew that they were wrong. I didn’t eat anything, even after they said it was okay. A resident came into my room to check on me, and I told him that my transverse colon seemed taut. He felt it, and agreed. He told the rest of the medical team (that he discovered this, of course), and they ordered an x-ray. I was right. I still was experiencing toxic megacolon. In short, I may have saved my own life.

The second turning point happened in early 2003. In late 2002, I had had an anaphylactic allergic reaction to Remicade. And in that case, it was my sister who may have saved my life because she alerted the nurse (who was not watching me closely) that my lips and nose were starting to swell up. Fortunately, intravenous Benadryl and stopping the Remicade halted the anaphylaxis.

My doctor wanted to try the Remicade one more time, in early 2003, but this time with me taking Benadryl and prednisone to prevent an allergic reaction. I was really not comfortable with that decision at all. I was scared, and I had a lot of good reasons to be scared. The other issue was that even though I had taken Remicade a few times, it didn’t seem to be helping me at all. I knew that Remicade was not a good choice. But I felt too much anxiety to express my concerns to my doctor.

I took the Benadryl and the prednisone and the Remicade was started. I did not have an anaphylactic reaction, but I had painful cramping in my lower back in response to the medicine. I was able to articulate what the painful sensations were like to the nurse, and she gave me a shot of Demoral, a painkiller medicine, and stopped the Remicade. I took a cab home from the hospital. And it was then that I made an intention to find my voice with medical professionals.

A few weeks later I spoke up and asked my GI doctor if I could take 6MP, an immunosuppressant. I was aware it had side effects, but I suspected it could help me to break out of the vicious cycle of being hospitalised. She prescribed it, and it was temporarily stopped when I was hospitalized later that month. But I asked if we could continue it once I was more stable. I started taking 6MP (mercaptopurine) again in March of 2003. By June of that year, I had achieved remission. I was never again hospitalized for Crohn’s disease.

Since then, I have become an even stronger self-advocate. I have learned how to state clearly what I need, and to even question doctors when I believe they are making decisions that could compromise my health. And I’ve now been in remission from Crohn’s disease — with only a few slight rises in inflammation of my gut that were still under the threshold of true flares — for over 12 years.

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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

Ten years later

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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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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Befriending anxiety

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:

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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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