Wednesday, November 19, 2008

It's A Numbers Game

I had anticipated today’s rheumatologist appointment would be a useful one. And alas, it wasn’t.

After taking me almost an hour late – and the nurse asking me if I was okay (?) – Doctor C’s sage advice was, “Have you considered taking a break from school?” Oh yes, because it’s really that simple.

But since my “levels” are all much improved, no major change in my medication. And Doctor C can’t tell me why I’m still in pain. Doctor C is confident, though, that the pain I’m in isn’t indicative of potential joint damage.

Basically, I left my appointment feeling pissed, frustrated, and angry. Why does everything have to be so complicated?

Doctor C has cut me loose for six months. And I’ve made the decision that at my next appointment, I’m going to ask to be taken off all the medication. I’m done with this back and forth, up and down, changing doses when none of it did a damn thing anyway.

You know, as much as I think Doctor C is doing a good job, this approach just isn’t working for me. It frustrates me that the only solutions Doctor C can come up with are impossible and impractical ones. And I continue to guard my emotions, to attempt to appear invulnerable and in control.

Hence, the problem in our relationship, as it has always been, is a profound failure to communicate. Because Doctor C speaks in a foreign language and I don’t speak at all. But how to convey the frustration, the difficulties that I face and feel in an unemotional way?

I couldn’t bring myself to ask the question that I really want an answer to – Is this as good as it gets? Is the way I feel at this moment the best I can hope for? It’s a set of questions that I’m obviously not ready to hear the answer to. On the other hand, maybe I already have.

Just as it appears that my healthy and sick lives are not synonymous, neither is my personality and Doctor C’s.

There are so many times when I’m tempted to say something like, “I know sometimes my social skills are found wanting, but that’s because I don’t feel good. What’s your excuse?”

The truth is, I had written Doctor C off a long time ago. And I’m not sure where I stand at the moment. Because the reality is that while Doctor C was doing the best job that could be done, I was the one who was unrealistic about things. It’s crazy to think that you can be healthy one minute and then the next you are never able to feel that way again. Maybe the real truth, though, is that both Doctor C and I had unrealistic expectations.

I guess I shouldn’t be all that surprised that in the end, all it comes down to is the numbers. But I guess my main fight this whole time was to be more than just a number, more than my illnesses, and more than just a patient.

So here’s a number for you. Zero. Zip. Zilch. None. I’m done!

(And I know that one day, even some day very soon, I will look back on this post and be shocked by my own flare for the dramatic. But at the moment, I’m feeling pretty steamed…)


  1. Hi Leslie!

    I was just diagnosed with lupus. I have been fighting kidney failure for about five months and am taking chemotherapy for it.

    I like your blog and like reading your story. (I've put you in my blog roll and will be coming back!)

    I hope today is better than yesterday.



  2. Leslie
    I believe this kind of thing can simply wear a person down on a day to day basis. I have been dealing with CHF for over 2 years knowlingly and I find now probably a couple of years before it manifested. I also deal with osteo arthritus....Chronic pain and never knowing how much energy for life will be available day to day
    can be incredibly wearing.
    The path I am taking is to simply keep working and keep walking and try to live as balanced a life as possible..and again some days it seems not nearly as much is possible. You are in my thoughts.

  3. *hugs* to you, Leslie. If you're not clicking with Dr C, is it time to find a new doc?

    I'll be thinking of you.