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Teaching through chronic illness: Stay organized!

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Carrying my binder around the Cleveland Clinic became more onerous each day of my visit.  I did not dare leave it behind, though.  My baby blue binder had my imaging CDs, my symptoms notebook, places for visit summaries and receipts, my to-do lists, and all of my medical history for the last ten years.  Sure, it was heavy, but I needed the place to take notes, to pull out what doctors asked for, and spots to put new paperwork in. 

The internist in charge of the referral program, Dr. Hayden (a truly gifted internist and worth all the hassle to go see), laughed at seeing my documentation, my note-taking during visits, and everything; yet, he smiled and said he just was not used to seeing all of it so organized.  I told him that it's because I'm a teacher.  We're like that.

If you are dealing with a chronic illness, pain, or a disease that is disabling you in any way, you are going to end up seeing many doctors, getting many labs and images, and getting many print-outs.  Worse, not all the doctors will agree with each other, so you will need to keep straight what each one says, and you will need a place to keep track of all your medication.

I recommend getting a big binder, just like what our students use.  Then, I recommend getting the following for the binder:

  • sheet protectors to put the most important papers in
  • plastic folders, one for each doctor or care-giver as well as one for important papers and one for bills
  • business card sheet protectors (more on that in a moment)
  • CD folders
  • a notebook
  • sticky notes and Post-It labels for each section

The notebook is for taking notes, keeping track of symptoms (especially during and after tests--documentation of anything odd is key during and after any tests!), and writing out what your symptoms are so you can quickly recite them for any new doctor.

The business card sheet is for two important things: caregivers' cards for contact information and medications.  For your medications, including any supplements or over-the-counter medications you use, cut pieces of paper to fit the spaces, and then tape one pill to the paper and write all the information about that medication on the paper.  Don't forget to include how often to you take it and how many you take at a time.  Trust me, nurses love having the sheet(s) handed over so they can just do a quick data entry rather than try to listen to you try to remember what you take when.  If any meds get changed, just take out the slip and make a new one with the new medication.

When you see a new doctor, start a new page in the notebook and a new section in your binder.  Make sure to take notes when you see him or her--one of the big problems with chronic pain or major illnesses is that our short-term memory tends to go first.

Another resource I recommend is Evernote, a free note-taking app that works on anything that can connect to the internet.  What makes it really handy is that you can use it to scan any important papers and then shred them or, better yet, use the microphone on your phone or tablet to record doctor visits (with permission, of course).  The audio note feature of Evernote is extremely handy for those of us with memory issues.

Just like with our students, it is important to keep the binder up-to-date.  Just make sure to clean it out and organize it regularly.  Scan anything important to Evernote or a similar note-taking app, keep insurance paperwork organized, update medications, and keep copies of all your labs, images, and office summaries.

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Carina Hilbert is a middle school English/Spanish teacher currently on medical leave from Kalamazoo Public Schools in Kalamazoo, Michigan. Carina has 10 years of teaching experience in urban, suburban, and rural schools; public, private, and charter schools; and grades 6-12. Last year, she also earned her Master's in the Art of Teaching from the University of Southern California through the Rossier Online program in Teaching English to Speakers of Other Languages with her capstone research being on rural English language learners in Michigan. Carina's main teaching interests are blended learning, alternative education, project-based learning, and working with language learners across the curriculum. She lives in Kalamazoo with her two amazing children, her fiance and his son, as well as their two cats and her rather sizeable book and yarn collection.

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    JB Saturday, 04 June 2016

    I am also a Spanish teacher with fibromyalgia and cfids, so I can relate. I like the idea of the binder. I have been working on organizing my medical records that go back 18 years. I think instead of taping an actual pill inside the binder, you could make a color copy of all your Meds and just cut out "paper pills" and paste them in place--or take a photo of all of them and do the same. I worry that I would lose track of the binder somehow, or that pills would fall out and be taken by dogs or children. I have read a few of your posts and think they are great. My best to you. JB

  • Carina Hilbert @CarinaHilbert
    Carina Hilbert @CarinaHilbert Saturday, 04 June 2016

    I like taping the actual pills so there's no confusion, but for really round ones, a picture or a copy might be a better idea. I just taped down the edges of the card slots, so nothing falls out.

    Organizing records that go back that far is a challenge!! Wow! I only went back ten years, and thank goodness some of that was still available at the hospitals since I couldn't find my copies after my recent moves. Those diseases are definitely challenges on a good day, so I will be keeping you in my thoughts. Have you ever looked at the website/app MyFibroTeam.com? I have found the support of fellow fibro patients to be invaluable, especially in getting feedback on new treatment ideas or on weird symptoms.

    Thank you for the feedback! I'm still working on figuring all this out, and I'm thankful to have an experienced teacher like you along to help. Thanks!

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