Getting My Head Around My Annual Scleroderma Checkup

Getting My Head Around My Annual Scleroderma Checkup

Scleroderma and the Ordinary Girl

This week, I had a review appointment with my rheumatologist. She is my primary medical professional and manages the other doctors in my specialist team the commander-in-chief, if you will. It is an important meeting, generally once every year. We go over everything, from a comprehensive physical examination and assessment of new symptoms to a full review of my medications.

But something really strange happens in the lead-up to this all-important yearly hour out of my life. In fact, I’m pretty sure I enter some kind of pre-appointment “Twilight Zone,” and basically become quite batty.

There are several familiar patterns that go with the prelude to the appointment that are pretty accurate indicators that I’m beginning to lose my grip on reality.

One of the first clues that I’m not coping pre-appointment is that I find myself talking to my doctor out loud in my very best sensible-yet-fervent voice. Except that this occurs about 14 days before the actual appointment. Sometimes it’s in the privacy of my bedroom, but often it’s in my car while driving, much to the amusement of the drivers in the lanes beside me. Occasionally, I go as far as to practice my expressions in the mirror just to make sure I’m coming across clearly.

As the day draws closer, the next phenomenon that occurs is that for hours each evening, I will earnestly troll the internet for studies, medical websites, and patient stories that back up my latest symptoms. Siri will put me right, you see, just in case I’m wrong about my own body. I have been known to end up somewhere in the depths of cyberspace around midnight, having diagnosed myself with several other rare diseases. Not to mention running a number of quizzes to find out which doughnut best represents my personality, just for a bit of light reading to help ease the tension.

Following this, there are several “Kim Tocker Quiz Evenings,” held in the privacy of our spare bedroom. Just to be clear, I am the only person in attendance. During these special preparation sessions, I make lists of questions, which I am second-guessing my rheumy is going to ask me. I can spend hours quizzing myself, as I am determined to be prepared with the correct answer and not waste her time. To date, I don’t think she has asked me a single one. This always disappoints me, given the amount of blood, sweat, and tears that goes into the preparatory work I’ve put in behind the scenes.

My social life also goes on hold while I am in this bizarre pre-appointment realm. Outings are postponed, in case I get sick before the big day, and also for a couple of weeks after the session, in readiness for further tests she may order. Life basically grinds to a halt, until that moment I emerge from her rooms, clutching a handful of lab requests and prescriptions, and feeling like I need to sleep for a month to get myself balanced and back to reality.

Why do I put myself through this every time?

The answer continues to elude me.  

Perhaps it is a combination of my tendency to place my rheumatologist on a pedestal, imagining that she is some kind of celestial knower-of-all-things scleroderma-related and a medical-deity extraordinaire. When she tells me she will get back to me once she has spoken with colleagues and done some research, it reminds me that she really doesn’t actually know everything.

Additionally, being aware that I will be under the spotlight during the appointment gives me stage fright. For three weeks before the meeting, I have a recurring dream about being the star in a stage show, but not knowing my lines. It may be that I simply forget that my own expertise with my disease is just as important as her knowledge.

I’m wondering if a little more balance in my view of the medical profession, and a little more faith in my own experience with scleroderma, will go a long way toward avoiding the pre-appointment “Twilight Zone” the next time around. Here’s hoping!

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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.

2 comments

  1. Joss says:

    I think it’s because so much depends on it,how safe and well you’ll feel for the next year, have you covered everything
    It’s a hard illness to have with such uncertainty
    That adds a layer of complexity to the physical symptoms
    I find this uncertainly very anxiety provoking and want to be sure I’ve covered everything and there’s usually lots!

  2. Josh says:

    It’s the crushing uncertainty of what this illness will do next that is agony s well as the physicalsymptoms.
    Alot hangs on that needs with the expert!

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