A few weeks
ago, I forgot to take my meds. Well,
more accurately, I accidentally took my evening meds in the morning, which
meant I couldn’t take my morning meds that I missed. No harm, no foul, right?
WRONG!
The next
day, before and after taking my morning meds, I felt awful. I was in pain all over and felt nauseous and
dizzy. I stayed in bed all day. It was really terrible. I felt like I was going into a flare.
And I had a frightening
realization for the first time ever.
I am
medication dependent.
I can barely
go one day without meds without feeling terrible. Seriously?
So when I saw my rheumatologist recently, I mentioned to her what had
happened and she basically agreed that, that means the meds aren’t working as
good as they should be. This is really
frustrating.
The goal is
for me to be stable, but one day of missed meds and feeling awful means the
opposite of stable.
I’ve also
learned that I can’t take my morning meds much later than 11:30 a.m., or I will
feel bad all day. So there is a very
small window in which taking my daytime meds actually works. I have a similar issue with nighttime meds in
that I can’t take them much beyond 1 a.m., but the difference is that my nighttime
meds are more for helping me sleep and less about treating my lupus and
RA.
After
discussing these issues, my rheum talked about clinical remission and how it is
still possible for me. I am not
convinced. How can I go barely a day
without meds without being incapacitated and believe that remission is a
possibility in the near future?
I don’t even
like thinking about the term remission because I don’t really know what it
means. I mean, I know what remission is,
but it seems like such a lofty goal, a goal I’ve never really considered
pursuing before.
For me, the
bigger goal is preparing my crazy wired body for pregnancy sometime in the next
several years. And whether that comes
with remission or not is anyone’s guess.
I very
rarely make mistakes in taking or forgetting to take my meds altogether. But it’s frustrating to know that I don’t
even have a day grace period.
It means I
can’t mess up. It means I have to be
perfect all the time. And I guess that
may be one of the reasons that I have always focused on medication above other
things, like diet and exercise. Now that
I’m back to really thinking about those other things, it’s even more annoying
that I’m medication dependent.
It’s much
easier to take meds when you know they work, or you have the expectation that
they will work. And when you experience
the meds not working because you didn’t take them, it’s sobering to realize that
your health or lack thereof is totally dependent on meds and your ability to
take them.
Wow, Leslie. Thank you so much for sharing this. I'm sure that it was not easy to be so vulnerable and come to terms with such a realization. I think that as chronic illness/pain patients, sometimes we are so busy "going through the motions" of taking meds, going to appointments, working hard in therapy, getting labs done, etc. that we forget to take a second to grieve the loss of things we might not have otherwise lost if we were healthy. It's a balancing act of remaining optimistic and still being realistic...for sure. Hugs, friend! Can't wait to meet you at MedX.
ReplyDeleteI am absolutely medication dependent and I'm fine with it. If it's what I have to do in order to do what I want to do, then so be it. But then, I have a bit longer grace period before my life goes in the toilet.
ReplyDeleteRemission is a funny thing. For over 40 years, nothing worked for me and then something did. Have faith. If your doctor believes this is possible, trust her. It is.