Monday, August 8, 2011

Is Chronic Illness A Temporary Home?

‘This is my temporary home
It’s not where I belong.
Windows and rooms that I’m passin’ through.
This is just a stop, on the way to where I’m going.
I'm not afraid because I know this is my
Temporary Home.’

-         “Temporary Home,” Carrie Underwood

I haven’t written for about two weeks, and I’ve been hiding out a bit.  I’ve had a lot on my mind recently. 

I’ll admit.  Until recently, it had been a long time since I thought about my diagnoses.  I mean, I think about lupus and rheumatoid arthritis all the time.  But it has been awhile since I questioned whether these labels were the correct ones.

Why is this?  Well, in the course of doing my dissertation research, at one of the conferences I attended, when talking to one of the organization heads, she asked me if my doctors were sure that I had lupus.  She suggested that symptoms of growth hormone deficiency in adults can masquerade as lupus symptoms.

I don’t even remember how we got on the subject.  But this person suggested that, despite my being born three months early, she said that given my parents’ heights at 5’6”/5’7”, I should have fallen somewhere in the middle between my actual height now as an adult and what my height should have been. 

Given this news, I was torn.  Should I explore this further?  In some ways, it seemed a bit off to me.  But the reality is, this isn’t something that my doctors would have tested for.  It takes a special kind of test, which is usually ordered by an endocrinologist.

In some ways, this experience took me back to my pre-diagnosis days, when people were suggesting snake oil cures, and all sorts of diseases, from the easily curable to the almost always fatal.

The reality is, though, that I don’t want to be on chemotherapeutic agents and drugs that are no longer commercially available in the United States, if I don’t have the illnesses to warrant such treatment. 

Having a growth hormone deficiency as an adult would require a daily injection with growth hormone.  Yes, the precise type of treatment (IV and injection therapies) that I’ve tried to avoid thus far.

I knew that my doctors would be a hard sell, and to them, this probably seemed like a harebrained idea.  But I needed to know.  Part of me wished I could just forget that the conversation ever occurred.  But another part of me asked the question what if? 

Part of me hoped that was the case.  Goodbye lupus and rheumatoid arthritis.  But part of me hoped it wasn’t, because I feel that I’m finally at a place of acceptance when it comes to my illnesses.

I was never one of those kids who started off growing “normally” and fell off the growth charts.  I was never on the growth charts to begin with.  I was born at 27 weeks gestation, weighing in at two pounds, three ounces.  I spent the first four months of my life in the neonatal intensive care unit.

To my parents and doctors, the fact that I escaped so many of the problems that premature babies tend to have – especially in the mid- to late-eighties, when babies my size almost universally did not survive – and the fact that I was normal health-wise and above average developmentally, was the concern, not that I was small.  But this has always been an issue in my life.

So I asked my primary care doctor.  And she told me to ask my rheumatologist.

So I wrote my rheumatologist the following e-mail: “I saw Dr. [PCP] today - we discussed several things - and she said this was something to ask you.  In the course of my dissertation research (which is on something sort of unrelated), someone mentioned to me that the symptoms of lupus and of a growth hormone deficiency in adults can be similar.  I know that that is not something that ever would have been looked at.  Do you think this is something to pursue, if only to rule out?  I don't want you to think that I am not confident in your diagnoses, I am.  It’s just that this person has put this bug into my butt, and it’s something I’ve been thinking about.”

My rheumatologist said what I expected him to say: “I have not heard of this connection. As you have the typical auto-antibody markers of lupus I do not know that this would be worth pursuing.”

To be honest, the person that put this idea into my head really had no business providing this unsolicited advice.  I didn’t ask for it.  I certainly didn’t want it.  And it was making me question things about myself that I really didn’t want to question.  I’m sure that this person came from a place of good intent, and was truly trying to be helpful, but it didn’t really feel that way.  It actually made me feel a bit queasy.    

I did read about the symptoms of GHD in adults, and to me, the thing that stuck out is that the symptoms seemed to be more psychological than physical.  And they are pretty broad.  I also went back and looked at the symptoms of lupus.  And like it or not, they fit so well with how I’ve felt over the last several years.  It’s not just that the lab work bears it out, as my rheumatologist said.  The way I feel bears it out, too.

And based on the way I’ve felt the last few days, with the humidity kicking up the lupus, and the change in barometric pressure kicking up the arthritis, I feel more confident than ever that this is what I’ve got going on.

So that’s it.  “We” will not be pursuing this other idea.

And for now, even though my current diagnoses are sticking, they make me realize that diagnosis is a transient state.  It’s rarely absolute.  It’s rarely clear cut. 

Even after three years of being diagnosed with lupus and rheumatoid arthritis, and finally being on a medication regimen that seems to be working reasonably well, there were things that caused me to question.  I didn’t want to question, believe me.  But I did.   

And what I realize is, irrespective of the specifics of this situation, this isn’t the first or the last time that something like this will come up.  And it’s not the first or last time that I will question my doctors. 

The unknowns of chronic illness are the most difficult aspect, in my opinion, and I think that’s what made this suggestion seem so important.  What if my diagnoses are incorrect?  What if I have this other issue?  The what ifs could go on and on endlessly, but they aren’t productive (for me, at least) at this point.  So it wasn’t really so much about what if I have GHD.  It was more of what if I don’t have what I think I have, and have come to accept?

Just as diagnosis is transient, so too is life itself.  Everything is temporary.  This body.  This life.

So I’m still here.  And for now, so are lupus and rheumatoid arthritis.    

1 comment:

  1. Once again we are going through something similar- maybe not the same page, but at least the same chapter. Lately Lyme has been heavy in the news and several friends and family have been questioning my symptoms. The problem is, as far as I know I was never tested for Lyme, have been bitten by ticks in the past. Do I pursue this or not? Would it replace a diagnosis or add another to my herd if I came up positive? I think you did the right thing in checking, if only to cross it off your list- you mind may not be at ease, but sometimes I think wondering is worse.