Monday, September 3, 2012

It’s Nothing Personal, But Then Again, It Is

I used to take everything illness-related very personally.

Well, who am I kidding?  I still do.

But I’ve been doing a lot of thinking lately, since I heard from my rheumatologist at the end of May that I needed to start seeing a nephrologist (kidney specialist) because my creatinine was elevated, and then finally meeting with the nephrologist at the end of last week.

Kidney involvement is common in lupus, and I guess I had been holding on to the idea that I had, by some miracle, escaped it.

But it looks like I haven’t. 

And in the past I probably would have seen this situation in the following light: Then I must have failed somehow.  If my diseases seem relatively stable, but I’m still having problems, it must be my fault.

I know that’s the way I felt when I was taking Methotrexate.  Every time I’d get a call from my rheumatologist’s office that either my liver levels were elevated or my white blood cell count was down, it felt like I had done something wrong, like there was something more I should be doing to make sure that it didn’t happen again the next month.  But try as I might, we eventually stopped doing the MTX dance because my body couldn’t handle it.

I was off of MTX more than I was on it.  And when we finally made the decision to take me off of it, the liver levels and white blood count returned to normal almost immediately and stayed that way. 

We certainly gave it a fair shot.  But I remember feeling pretty devastated every time I got a call telling me that my doctor was concerned about my lab work.

And I was equally, if not more, devastated, when my doctor e-mailed me about my kidney function.  It was a shocking blow to me, something I should have always had in the back of my mind, but really wasn’t expecting.

Yes, it’s my body.  But if there’s anything chronic illness has taught me, it’s that I’m not totally in control of my body.  I thought I was living a pretty healthful lifestyle until I got sick. 

So yes, there is certainly an element of personal responsibility in managing chronic illness.  Am I taking my meds?  Am I taking them correctly?  Am I going to doctor’s appointments and following up on test results?  Am I alerting the proper physician when there are issues? 
But that’s where the personal responsibility stops.  If we try a medication and it doesn’t work, or it works but is doing negative things to other areas of my body, that’s not my fault.  If my kidney function suddenly and inexplicably changes, I’m not a bad person or a bad patient. 

I’m a lupus patient, and really, that’s not all that surprising in the grand scheme of things.

But maybe I don’t want to know anymore.  If it’s not one thing, it’s the other.  If it’s not the liver, it’s the kidneys.  If it’s not the rheumatoid arthritis then it’s the lupus and vice versa.

This song and dance is getting exhausting.  Equally exhausting is being lost in the ether of the medical industrial complex. 

The nephrologist ordered labs and a kidney ultrasound.  The office scheduled my appointment for the beginning of March and the ultrasound for the same day.  When I told them that she wanted me to have it done sooner, they refused to schedule it any time other than the same day.

And nearly a month ago, my gastroenterologist prescribed Amitiza for me, which is a drug for chronic constipation, which has been quite debilitating for me since I got sick.  The pharmacy told me that they needed prior authorization.  When I went to the pharmacy again, they told me that they were still waiting.  I called my doctor’s office, and the person I spoke with had no idea what I was talking about.  She finally found the information and said she would hand it off to a physician’s assistant.   

School starts in the next few days and I’m exhausted.  I’ve spent so much of my life over the past five years sitting in waiting rooms, meeting with doctors, having procedures done, taking medication, and pretty much fighting for my life, especially when it ends up in the hands of people who frankly just don’t care.

But it’s nothing personal.  And maybe that’s the problem.

Because in reality, it’s all personal. 

I really do try not to take things so personally, but when my life and my health are in the balance, it’s hard not to.

(On an unrelated note, once school starts and I get back into a more steady routine, I pledge to blog more.  The last few months have just flown by.)


  1. I wanted to drop by and let you know publicly, not just privately, that you are an unbelievably strong woman who continues to strive despite every unnecessary and scary hurdle.

    I greatly appreciate you sharing your story (and your friendship) with me/us over the last few years. Know that there are many of us out here who are not only learning from and honoring you, in all you offer, but we are also in your corner believing that, if anyone will achieve many things in her life, it will be you.

    How's that for personal? :)

  2. I totally agree that it seems personal! It's just a pain in the butt every single day. I'm going off Fentanyl gradually and had a migraine for six days, now I'm feeling exhausted, and there's so much I want to do! The fun never stops. I'm so sorry you're having to deal with lupus as well, I just have RA and Fibro. Hang in there, I have a link to your blog on my blog, although they're about different subjects!

  3. I really like your posts. I hope you don't mind me taking this slightly off-topic, but your choice of title for this post not only resonates with me... It also reminds me of a similar but different phrase I've often found myself wanting to explain to people about my experience with chronic illness and life in general: it's all relative, but it's not. Does that make any sense to you? I don't have a blog, otherwise I'd write a post explaining what I mean by that. In short, what I mean is that while sometimes it's helpful and may be true that "it could be worse," that doesn't mean that everything is really ok, or that it's not that bad. I could write a lot more... maybe I could somehow illustrate it with a comparison to relative risk vs absolute risk and how relative risk statistics are often used in a misleadIng ways (so I think I've heard - I'm not a statistician!) to promote drugs treatments or in the flip side to scare people about rare side effects. If you have any thoughts on to share about "it's all relative" I'd love to hear your perspective from your personal experiences!