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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Getting through the “why me?” days

I think we all experience moments of wondering why we have to deal with a particular health challenge — what is the purpose of it? We might see ourselves as “abnormal” and wish to just be more “normal.” We might look with envy on others who seem to have it “so easy” and wish that we could have some of that ease. When I did my dissertation research, “Why me?” was a commonly reported thought among women with chronic pelvic pain. Some even wondered why God had given them such debilitating pain and illness.

Sometimes we just reach a threshold of not wanting to deal with chronic illness or chronic pain anymore. All of our excellent coping strategies fall by the wayside because we’re just too tired to apply them. We feel mentally defeated in those moments. And we can’t seem to just talk ourselves out of them. The sense of defeat and demoralization is too strong.

When we are absorbed in the “why me?” of coping with a health challenge, it just seems awful. Suffering isn’t rational! The “why me” comes from the feeling of being sucked into a “me bubble” of despair.

So how do we get through the days in which despair seems overwhelming? Here is what I do: More

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