Teaching with Chronic Illness Survival Tip: Get Help Staying Organized

One of the first things to be affected in any chronic illness is memory.  Pain, medications, lack of sleep all can negatively affect one's memory.  Given everything we're supposed to remember as teachers, though, that memory problem can turn into a big issue when evaluation time rolls around.

The good news is that there are many ways to support memory loss.  Since educators are already used to documenting, it just means documenting a bit more and more effectively.  This is also where your phone or tablet can really come in handy, even better than a million sticky notes on your desk.

Memory supports I use and suggest:

• Evernote.  True, there are tons of good note-taking apps out there now, and you might find that a different app works better for your style, but few come close to the power of Evernote.  You can try it for free before deciding whether or not to pay for a higher level, and many find that the free version does more than enough.  You can take all kinds of notes in Evernote, from taking pictures of handwriting or meeting handouts to making an audio note of a conversation.  It even has scanning capabilities now, so you can scan important documents and have them with you all the time.
  
  The best part of Evernote is the ability to easily organize and find any notes.  You can put notes into notebooks, add tags quickly so you can search on that topic and find the note fast, and you can even stack notebooks.  Evernote even has handwriting recognition software, so you can search picture notes of handwriting and find what you need.  Add in Evernote's ability to take notes on PDFs and even use a stylus to write your note on your phone's screen and then just tap what notebook to put that note into, and it's an adaptable, easy to use way to document what you need help remembering.
  
  I am also a fan of Evernote's ability to work with Google apps.  WebClipper, a Chrome extension, means that you can clip anything you find online to any notebook in your Evernote account.  You can even tie your Evernote and Google Drive accounts.  I have been using Evernote for years now, and I still haven't figured out quite everything it can do.
  
• Livescribe Pens.  I am still new to this one, but what I like is the ability to easily take audio and written notes at the same time.  With pain comes brain fog, and it really helps to be able to take audio notes.  These are great for parent conferences, but just make sure that you get permission to record from all parties, per your state's regulations.
  
  What's really nice about the Livescribe Pen is that you can take notes in meetings, record the audio, and then watch the audio playback on the free app on your phone, which highlights each word as it's written along with audio from that moment.  If you are going into a serious meeting and worry about missing something, this is a valuable tool.  If anyone is concerned about consenting to the recording, just send them the link to the note, and they can hear it all, too, so everyone has a copy.
  
• Moleskine or other paper notebook.  I use a Moleskine weekly planner so I can take notes for the week as well as see what I have scheduled.  I'm still enough of a paper person that I have to write down when my appointments are so I can see the whole week at a glance.  Moleskine and other similar planners are also great for the bullet jounal method, which many people really like.
  
• Google Calendar.  The best part of Google Calendar, at least for me, is the ability to set multiple reminders.  While I keep a paper planner, I also keep a full copy on my Google calendar as well.  That way, I can set reminders, have the map to the new doctor's office available on my phone, and even attach notes on what to bring, when to get there, or whether or not I can eat beforehand.  I can even attach the link to an Evernote note in the comments box if I need to be able to show the doctor a copy of my medications or whatever.  Google Calendar will even add on driving time and send you a notification of when to leave to get there on time.  For those of us with chronic illness and therefore many appointments outside of work, this can be a real help.  I even have added in the water yoga classes I need to take and reminders for exercising.
  
• Brain Focus or a similar Pomodoro or timer app.  For those of us who need reminders to get up and move every 20-30 minutes so our muscles get the stretching they need, this app is really helpful.  I also use it for any project that I know can suck me in (i.e. grading, lesson planning) so that I take breaks as needed and remember to go to the bathroom or stretch.  You can even set it for the classroom and use it for 8 and 2 or a similar method.  Even better, the phone app can disable your phone's wifi and sound during a work session to help you stay on task better. 

Cell phones these days are powerful things, and there are many tools available to us to help with memory issues, reading problems, staying organized, or even staying on task and taking breaks as needed.  If you know of any other ones that help, put it in the comments!

Chronic Illness and Self-Care: Arts, Crafts, and Music Can Help

One of the side effects of teaching is that we often give up our hobbies, our crafts, even our art for our job.  Our jobs are so overwhelming that we often sacrifice our music, our art thinking we don't have time for it, not with needing to make another parent phone call or write another lesson plan.

For those of us battling chronic illness or even disability, though, we need to make time for our crafts, our art.  An interesting study by Stuckey and Nobel in 2010 found that patients with chronic health problems do better if they create something, anything, especially visual art, music, dance, or creative writing.  In all reality, it helps all teachers, since the study found that, "despite methodological and other limitations, the studies included in our review appear to indicate that creative engagement can decrease anxiety, stress, and mood disturbances" (Stuckey & Nobel, 2010).  For those of us living with pain or chronic health issues, creating music or poetry, painting or knitting, dancing or sewing can help us heal: "When people are invited to work with creative and artistic processes that affect more than their identity with illness, they are more able to 'create congruence between their affective states and their conceptual sense making.'104(p53) Through creativity and imagination, we find our identity and our reservoir of healing" (Stuckey & Nobel, 2010).  Finding that "reservoir of healing" would be amazing for most of us.

So, how do we fix this?  Kate Harper interviewed Rice Freeman-Zachery, author of Creative Time and Space: Making Room for Making Art, and she came up with ten ways to make time for our creative processes.  In reality, many of these are tricks teachers already use to make time for our jobs at home, but we can also use these to fit in our music, our art, our writing.  I personally like #7, wearing what we need to feel like the artists we are.  We so often wear teaching clothes, even outside of the classroom, putting on that professional mask  It's okay to wear what we need to wear, put on what you need to write, create, sing, dance.  Do it to feel better, to be whole.

References

Harper, K. (n.d.). 10 Ways to Make Time for Your Art: An Interview with Rice Freeman-Zachery. Retrieved June 11, 2016, from http://emptyeasel.com/2009/10/19/10-ways-to-make-time-for-your-art-an-interview-with-rice-freeman-zachery/ 

Stuckey, H. L., & Nobel, J. (2010, February). The Connection Between Art, Healing, and Public Health: A Review of Current Literature. American Journal of Public Health, 100(2), 254-263. doi:10.2105/AJPH.2008.156497 

Denial and chronic disease: Turns out that it's not all bad.

When we get a major diagnosis, even if it's one we've been expecting, there is always a certain amount of denial, at least at first.  Okay, the denial can last longer than just at first.  Just when we think we have come to terms with everything, denial sneaks up on us, and we find ourselves facing the realities of our diseases yet again.

One thing I have read about in studying fibromyalgia, my main diagnosis, is that loud music and other stimuli can trigger a flare.  One of my jobs on medical leave has been to figure out my triggers and learn how to manage my disease better.  I thought I had figured out most of them, and then I went to my daughter's high school band concert tonight.  I love band, and I love her concerts.  I was in band all through school, and I love watching her get better every year.  Tonight, though, for the first time, I reacted to the music and had a fibro flare.

It felt like the music was hitting me in waves.  Every nerve felt like it was on fire, and then my muscles tightened up.  I couldn't leave in the middle of the piece without crawling over people, and I wasn't sure I could even stand up at that point.  I sat there and used every pain control method that has ever worked on me and prayed for the piece to end faster.  I managed to get through without entirely breaking down and crying from the pain, but this flare up has yet to calm down in the hours since.

It all started with denial.  I was up all night in the emergency room with my fiance, sitting in a chair that got progressively harder to sit in as the hours passed.  Then, after a bit of a nap upon getting home, my daughter needed to get picked up from school due to illness.  (Yeah, it's been one of those springs for our family.)  Errands for meds and provisions were followed by the concert.  I was in denial of classic triggers for fibromyalgia: doing too much and getting overstimulated.  I had to be the good mom, the good fiance, and I was in denial about my limits and fibromyalgia reality.

Here's the really interesting part for living with chronic illness, though: denial isn't always a bad thing.  There are some studies that argue that denial is a healthy coping mechanism because it's based on hope: "Quite simply, being unrealistically positive may be a coping mechanism that helps people feel better and is associated with positive social relationships and motivation to work. Further, it appears to aid people to recover from particular health-related stressors (Scheier & Carver 1985, Carver et al. 1989, Scheier et al. 1989)" (Alvani, Parvin Hosseini, & Alvani, 2012).  While I would definitely not argue that my current flare up is a good thing, if I had just stoically accepted my fibromyalgia and decided I had to stick to strict limits, I would not have been there for my fiance, and I would have missed my daughter's concert.  The pain is worth what I got and was able to do in exchange.  Now, though, I know that loud band concerts can be triggers and can prepare better for the next one.

One could argue that we educators live in denial.  If we just stoically accepted our limits, we would have to give up on students and schools.  That just isn't in most educators' DNA.  The very nature of our jobs requires us to be optimistic and positive about the future, even when all the data says otherwise.  To be a disabled teacher means that we will revert back to that positive, living-in-denial teacher at some point, and that's okay.  Turns out, we'll have better outcomes because of that.  Don't let go of that hope, and indulge in denial now and then when needed.

References

Alvani, S. R., Parvin Hosseini, S. M., & Alvani, S. (2012). Living with Chronic Illness and Disability. International Journal of Business, Humanities and Technology,2(5), 102-110. Retrieved June 3, 2016, from http://www.ijbhtnet.com/journals/Vol_2_No_5_August_2012/11.pdf

 S. (2015, March 12). Hypersensitivity To Sensory Stimuli In Fibromyalgia ». Retrieved June 03, 2016, from http://www.fibrodaze.com/hypersensitivity-fibromyalgia/ 

Being a teacher is an asset when dealing with disability.

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.

One of the hardest decisions any teacher has to make....

Going on short-term medical leave was one of the hardest decisions I have ever made.  I had gotten used to the chronic pain, the dizzy spells, the tremors, the brain fog, but I finally had to admit that my doctor was right and that it was time to take a break, get to a referral center and see specialists, and get better.  Turns out, getting better will take far longer than anticipated.  Years, even.

Over the last few years, my health has gotten worse and worse.  I did not know all of my diagnoses until recently (then again, there are still some loose ends), not for sure anyway, but in the end, several doctors agreed that I cannot stay in the classroom and be healthy.  So...I don't get to be a classroom teacher any more.  When the specialist told me that, I cried.  I still randomly cry just thinking about it, still grieve the loss of my students and colleagues.  Fibromyalgia and a few other things have taken that from me.

Turns out, though, that I'm not alone.  I have found a shadow community of disabled teachers, teachers working through chronic pain and chronic health conditions, teachers trying to teach through cancer and more, teachers who are hurting.  There are so many of us, though we tend to stay in the shadows, disappear when we go on leave, keep our stories to ourselves out of shame.

This blog is for all of us teacher warriors fighting pain, specialists, physical therapy, insurance companies, and even our districts, colleagues, administrators, and families.