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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Living on the fringes of society as a person with a disability

Today is Blog Action Day and the theme is inequality.

I have devoted a good chunk of my professional life to advocacy for disabled people. I’ve submitted recommendations for revisions of the IDEA (Individuals with Disabilities in Education Act) in the US, served as co-chair of the Consortium for People with Disabilities Prevention Task Force, co-lead a coalition to save a $2.5 million program for children with disabilities, and spoken publicly at San Francisco City Hall about the need for better services for people with disabilities and aging adults.

My heart was fully engaged in all of those professional activities. I know firsthand what it is like to be a disabled person.

I am dismayed by the lack of progress on disability issues in the last decade. And it is not just in the US, my home country, that has failed in bringing about meaningful progress for disabled people.

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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

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

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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