Wading Through Medical Mania   Leave a comment

Notebook on Rock

During the worst moments of anxiety, I pick up the pen and paper, wade through the issues on my mind and return with more clarity and focus to move on.

Have you ever made yourself crazy with worry? Up all night, on the computer for hours, mania crazy? I would have never expected the effects that my mother’s death would have- on my own health.

For legal reasons, I cannot say that the medication my mother took for pain management of MS caused her death, but I do know it contributed to her death. She initially put the patch of pain medication on while I was traveling in Scotland, and had such a detrimental reaction that she went to the hospital. They removed the patch and gave her fluids, but sent her home, as her neurologist could not be reached. I still have the list of body functions that were affected on that day.

Yet, two days before her death her neurologist cleared her to use the patches. I always wondered about that conversation- did my mother resist, did she request to take it regardless, did he tell her of the possible fatal effects? I will never know. Later, the pain patches would be recalled year after year by the FDA for accidental death, accidental overdose, and complications with other medications.

I did go to visit one of her doctors and requested medical records. Yet, I was never comfortable with seeing her neurologist, who I wasn’t sure would tell me the truth. Already, one of her other doctors had pat me on the head, told me that millions of people die every day, for no reason at all. What a coward. I am sure he just wanted to cover himself. But what he did in turn was turn me against every doctor and distrust them. All I wanted was an honest conversation, and he couldn’t even give me that.

The first time after my mother’s death that I went to an ENT for sinus issues, it was suggested to me to take prednisone. I shook my head and sobbed. Once I composed myself, I began to ask, what on earth would make me react in this way?

Night after night, I would be scared to fall asleep, terrified that I, too would die in my sleep. While I have overcome many of those most raw emotions, I have not been able to shake the distrust of doctors, medicine and the medical system in general.

Using the tool of journaling has been instrumental in processing these emotions. In a creative journaling assignment I wrote, “Walking in to a neurologist’s office is a death sentence.”

Ironically, my husband has benefited from cutting edge technology, and while others have had reactions to using implanted devises, he has seen dramatic benefits that, from what I understand, have improved his quality of life incrementally. You can’t get much closer to Borg that him (except his mission is to help people become independent in their lives, not “add to the collective”). I have struggled with my own trust in doctors as I have seen him be so trusting.

As I am now faced with fairly minor issues that may require taking medicine, I enter the world of mania, pouring over forums and Internet medical boards with lists of reactions. I have medicine that I cannot take. Not yet. Will it change the way I feel- finally optimistic, focused and energized? And when I am in a doctor’s office, what they say makes sense; yet, at home, I question the doctor’s analysis and judgment. Are they just fluffing me off? Do they even know me at all?

Worst of all, I do have questions about mothers and daughters, and the genetic link of MS. But you won’t find me walking into a neurologist’s office. And I feel so sorry for when I am faced with interviewing a neurologist to work with and I read the concerns of care, the lists of conditions and questions that this poor physician will face. I will truly become the worst patient they have ever had.

Recently, I found myself brave enough to write a letter to the neurologist- and mail it. Now, I don’t expect a reply, but it was an act of empowerment in a place where I still felt dis-empowered in my life. Letter writing is a powerful way to say what we need to say- and have the option to burn, bury or tear it up, without an ill response. But in this case, I felt in as equally important that those words are read, even if it discarded on the other end.

This side-effect  I could never have been prepared for, and though I have worked through my mother’s death, have not yet been able to work through my reliability on the medical system and mortality that may come from the same system that is supposed to save lives.

When you find yourself facing a side-effect of a transition, loss or issue, taking out a notebook and pen can help you process through these issues that come up. In fact, writing about unresolved issues can positively affect our health by lowering blood pressure among other physiological shifts.

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