I was having an email conversation with a friend of mine this morning (I'll call her C), who is complaining of some scary-sounding symptoms that she thinks could be thyroid-related. She has had much trouble finding a doctor in the Boston area to take her seriously, one who will offer her a consolidated picture of her care and embrace evidence that is perhaps less than empirical. At the same time, she's been doing what I have done in the past, what I'm trying not to do as much going forward: forgetting about a recurrent pain when the pain stops, and remembering it/getting worried again when the pain starts.
I'm sure one of the reasons we do this - we forget pain the second is gone - is to take care of ourselves. We tell ourselves that, since the pain is gone, nothing's broken. And if it ain't broke, we think, there's no need to fix it. Until the pain starts again, weeks or months later.
My recurrent thyroid pain - which I thankfully remembered to mention to my primary care physician, and which my doctors are still fairly certain is not actually thyroid pain - is what motivated my primary care physician to order thyroid blood tests. When those came back with a slightly abnormal result, he sent me to an endocrinologist, who felt there was nothing wrong but tested me anyway, in the name of being thorough.
I was very fortunate all around. I was fortunate my endocrinologist decided to be thorough and do a preliminary ultrasound. I was fortunate she ordered tests beyond the standard TSH and found elevated antibodies and thyroglobulin (tipping her off something might be wrong). I was fortunate that, even for the small nodule she found, she sent me for a biopsy. Ultimately, I was fortunate that my first blood test result came back abnormal, otherwise I'd probably not have made it to an endocrinologist at all.
I'm interested in the big picture of my health. I have had thyroid-related symptoms for the last four years, pain on and off for about two. The first endocrinologist I went to told me I was normal, so I accepted that. Would things have been different had I continued to investigate?
My experience over 10 years ago getting diagnosed with Arnold-Chiari Malformation, which I was told was an incidental finding and nothing to worry about (and which had actually been the source of my lifetime of headaches, as well as other mounting symptoms in my early 20s), taught me that I needed to take charge of my health. The Chiari experience taught me that I needed to learn my diagnoses and make sure that I was comfortable with what the doctors were telling me, that I was the only person who would or could advocate for me, because I was the only person who knew what was going on in my own body, regardless of what the doctors told me they thought was going on.
Now, here I am again with a diagnosis (thyroid cancer) that I'm attacking. The small bowel adenomas I found out about this past week will also need to be examined. The pain I've been having elsewhere will need to be addressed, too. Here I am writing about this in the passive voice, but I know that I am the one who will need to be in charge of learning about these conditions, that I'm the one who has to take control of my care, my body, my own health.
As a woman, I have a problem with listening to doctors, male and female, telling me I'm wrong about how I feel. I'm going to stop doing that. I'm going to stop ignoring symptoms, stop ignoring my instincts about my body. If a doctor expresses doubt, I'll gently disagree and keep moving forward, asking him or her to put aside those doubts and get me the care I need. If a doctor tells me I'm wrong, I'll find another doctor. In the grand scheme of things, I'd rather offend a doctor than miss something.
In that vein, I'm also going to keep pushing for a consolidated care model for my self, in which my doctor knows what's going on with me at all times. So far, my primary care physician has the whole picture, as I keep him posted on everything. He's a very thorough, caring doctor. I hope that he and I can take the first step together in my newest experience of being in charge of my health.
I will not forget that I'm the only one who can manage my care. And I hope my friend C will embrace this approach, too. Let's stop ignoring ourselves. We are too important to ignore. Let's care for ourselves - and recognize that we, above all others, are responsible for that care.
No comments:
Post a Comment