I had an appointment with my rheumatologist
on Thursday. I wasn’t really expecting much to come out of it. I don’t mean
that as a criticism of her, just that I was under the impression that I had no
treatment options left. I wasn’t expecting that she would be able to do
anything for me and I really didn’t think the confusion over the diagnosis was
going to change.
Surprisingly, I was okay with this. I
blogged a few weeks about the pitfalls of hope when it comes to believing illnesses will get better, and I think the opposite can be true. If your
expectations are low, and you find a way to be okay with that, then anything
above those expectations happening is a bonus. There were a couple of questions
I wanted to get answers to, and I was really hoping that a cortisone injection
in one of my fingers was a possibility, but other than that I was okay with
nothing really coming out of the appointment.
It turns out the joint in my hand is too
small for a cortisone shot. I realised afterwards that I wasn’t sure if my
rheumy meant this is always the case with finger joints, or it’s just because
my hands are unusually small for an adult (they’re the same size as my
nine-year students’) but either way it wasn’t going to happen. Instead my nurse
gave me an intra-muscular steroid shot. I’d mistakenly thought this wasn’t an
option at the moment, as I’d got the time frame wrong as to how often you can
have them, so it was a bonus to be able to have something that would quickly
get some of my out-of-control symptoms back down to a more manageable level.
I was pleasantly surprised to find I do
actually have a couple of other medication option still to try. My rheumy was
at great pains to point out that a couple is not many, and as always there are
risks with any medication, but given that I thought I had zero options left a
couple is good news. I know very well that these may not work and, since I have
to wait for some blood tests to come back before I get the go ahead to start,
it may turn out not to be possible for me to even try. I’m not allowing myself
to get too invested in the idea that these will help but, at the same time,
they have more chance than nothing.
Then there was the diagnosis situation.
During the appointment, I thought my rheumy had actually come to the conclusion
that I didn’t fit any diagnosis clearly. I was pleased to find that I was fine
with that. In the past I have unintentionally placed a lot of significance on
the diagnosis, and all that has done is left me upset and confused. I cried
when I first got the diagnosis of lupus, and I cried when the diagnosis went
away again so clearly neither option was going to make me happy.
At the end of the appointment, my rheumy
suggested of the medication options available we go with the one that works
best for lupus, and she handed me a blood test form which had PsA and SLE
(Psoriatic Arthritis and Systemic Lupus Erythematosus) written under clinical
details. My nurse explained that sometimes people do have both running concurrently,
and that that may explain why I’ve managed to simultaneously get better and
worse on certain medications as they work differently with different diseases.
I don’t really know if any of that amounts to a diagnosis. It sort of seems
like it, but the last time someone actually said to me “yes, it’s definitely
lupus” and yet later they were surprised when I thought I had been diagnosed
with it, so I’m not making any assumptions.
The thing that I do know for sure, is that
I was okay with it either way. I didn’t feel the need to cry, nor did I feel
any relief or positive emotion about it either. The strongest thing I felt straight
after the appointment was a desire to go buy some chocolate, but I think that
was more down to the fact that I had the injection and four vials of blood
drawn all within the space of about five minutes.
I think the reason I’ve placed significance
on diagnosis in the past is that there was still a little part of me that felt
maybe it would change something, and I was in a round about way still looking
for that “better.” Of course I would still really really like it if things did
get better – I wouldn’t be looking at new medications if I didn’t – but I’m
doing my best not to hang everything on that. My new mantra is going to be: “Things
are okay now, and anything else is just a bonus” and I’m going to do my best to
listen to my own advice.
Thanks for Reading
Little Miss Autoimmune
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