When I called
to make the appointment, they said she had one appointment today or I’d have to
wait for over a month. So circumstance
made me face things head on.
And I’ll admit,
I was a bit nervous.
Several
weeks ago, I noticed a swollen lymph node behind my ear. A few days ago, it got bigger and became painful.
For those of us who have been on
medications for lupus and RA, we know that there is a risk of lymphoma. So of course, that’s where my mind automatically
goes. Unfortunately.
I’ve also
noticed that my immune system is not up to snuff. I feel like I am constantly about to get sick,
but don’t actually ever get sick, which for me is a telltale sign that my
immune system is bottoming out. I’ve
also been having a lot of itching and skin legions.
So the
verdict?
I am
having a lupus flare.
Did I
really need a medical professional to tell me this?
No.
Should I
have gone to the doctor two weeks ago when I started noticing things were off,
or been really proactive and made a preemptive strike a month ago?
Yes.
My rheumatologist
is upping my dose of Quinacrine, as I guess I have been on the lowest dose
possible until this point. She also
suggested going back on low-dose steroids while we wait for the higher dose of Quinacrine
to kick in. But I’m not feeling
that. If things stay the way they are
pain-wise, I’ll deal, despite my tender, achy joints. Because I finally just got off of the steroids.
But why can’t
I trust my own instincts? Why, when I knew
things were amiss, did I try to ignore them or assume I was being hypersensitive
and that I was just imagining all of these things?
Because I’m
in lupus denial.
I don’t think
I’ve ever really wanted to admit its primacy in my life.
To me, my
RA, while still unpredictable, is at least more predictable than my lupus, at
least that is when I can actually tell the two apart.
I am an
empowered patient, but sometimes even empowered patients work against themselves
and do stupid things.
Empowered
or not, I have fears and experience denial, just like everyone else dealing
with these illnesses.
Even six
years in, I’m not always prepared for
the realities of these illnesses or the things that could come from treating
them.
I can only
hope that the increased dose of Quinacrine will calm things down. I’m certainly hoping that the swollen lymph
node resolves itself so that it isn’t there when I see my rheumatologist again
in two months.
And I also
hope things calm down because in all of my denying what’s happening, I’ve
created an insane work and event schedule for myself.
But as Tim
Gunn likes to say, “Make it work.” I’m
going to fake it until I make it, or at least until my illnesses make it
impossible.
So yeah, I
guess even though I’m admitting I’m in denial, I’m still in denial.
Wading knee
deep in denial (de-Nile).
(Several
years ago, I had a neck x-ray and my rheumatologist in Michigan never told me
the results. So I pulled that out of my
medical record and took it to my appointment.
And as it turns out, those results basically explain both my lower back
and neck pain and issues.)
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