Guest post by MPN patient Emily
In my first post here I wrote briefly about the binder that I take to every appointment. I
have received several questions about it since then, and just thought I would
elaborate on why I use it, and what I include in it.
First and
foremost: I have NEVER been a very organized person. Just ask my parents about
my bedroom or my school work as a child...yikes. After being diagnosed with ET
though, and after my brief bout with apathy, I felt that my life was sort of
tumbling out of control. I had to find a way to create some order to keep
myself sane..ish.
Not knowing
about the disease, or how to manage it, I took control the only way I could
think of. I did as much research as I could and organized every single piece of
information I could get my hands on. That way, any minor changes would be seen
by me, nothing would get by me and I'd be an active member in my treatment team.
Even though I was not in direct control of the things that were happening to
me, I could at least monitor them and that made me feel a lot better.
The Binder is
in 6 parts. I'll go ahead and vaguely outline it a bit so you can get the
general idea:
I)
Questions/Answers for doc
-Just
like it sounds this section includes any questions that I have for the doc at
the time; either about symptoms I'm having or a new article I may have read
about treatment method, clinical trial etc. Make sure you have a notebook with
you though to go along with your questions. You always want to be able to write
down the answers. I made the mistake of not writing them down for a while and
without fail I would forget the answer to the questions by the time I wanted to
refer back to them.
II)
New/Recurring Symptoms
-As
new symptoms occur, I write them down and keep track of what they were, when
they happened and how long they lasted. I find this to be helpful, particularly
when I can link the symptoms to changes in
medication or blood count. Which leads
me to section 3...
III) CBCs
-I
get a copy of every CBC I have. This helps me to get familiar with my blood
counts, what my normal range is, and how the numbers fluctuate as medications
change.
IV) Medical
History/Appt Notes
-I
have my entire medical history including surgeries, medications, my current
diagnosis and and changes there may be. I also like to have my appointment
notes from my onc. It takes a few days to get them once requested, but it is
very useful to have. I can refer back to the notes from a particular
appointment and get clarification on something that was talked about, and
compare the notes to previous CBCs and see the conclusions the team has drawn
from the changes etc.
V)
Scans/MRIs/CTs etc
-These
come in handy if a doc asks "Have you had a (fill in imaging test here)
recently?" You can say conclusively no or yes and what date. But honestly,
I keep these because they're kinda cool. I especially love the x-rays of my
hips from when I had orthopedic surgeries...you can clearly see the outline of
the screws in my hip...it's pretty awesome...Yes, I am a huge nerd. Thanks for
noticing :)
VI)
Articles/Research
-These
are good to have because as I have stressed before YOU are your best health
care advocate. Doing research and learning what could be out there is not
pushy, it is not needy. On the contrary, it is necessary, in my opinion.
This binder
comes with me to the oncologist, to the GP, heck...if I ever think it's useful
I'll probably take it to the dentist with me. I have thought about carrying my
binder with me at all times. For convenience sake though, I did away with that
idea and made a digital version of my binder. I keep it on a portable USB drive
that I have in my wallet at all times. I update it frequently to make sure that
it is current. Having a chronic illness, you never know what may happen, so it
is best to be as prepared as possible.
I will say it
once again: You are your best advocate. If you do not stay on top of your
health care, then who will?
