• 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?