This week’s big chronic illness to do list

Well that was an unexpectedly long blogging break.  You’d think that after the big health insurance scare things would have gotten easier, but instead more shit piled on.  I won’t go into details now.  Instead, here’s my current checklist of health-related things I need to work on this week.  Of course there’s regular stuff too, like paying bills, doing laundry, and visiting an ill relative.  This is just the health stuff.  People think it’s all about taking pills.  If only.

  • Get infectious disease testing done.  To get testing, see a specialist.  To see a specialist covered by insurance, get a referral from PCP (primary care physician.)  To get a referral, have all recent specialist records sent to PCP.  To save time, since I am about to lose my health insurance, bring records to PCP myself.
  • Read stack of materials received at latest naturopath appointment.
  • Get food/mold/toxin/etc. testing done.  In order to get this covered by insurance, get a doctor to order the test.  Naturopaths aren’t licensed in Massachusetts, so find another doctor to do this.  Waiting to hear back from one specialist.  If she can’t or won’t, ask another specialist.  If he can’t or won’t try, the PCP.  If she can’t or won’t, get PCP to give referral to another doctor.  If she won’t, then consider spending $1100 to get test done without a doctor’s order.  If I do get a doctor’s order, call the testing company to figure out how to get the blood drawn at a lab that the insurance will cover, even though none of them seem to do it.  If this can not be done, consider spending $1100 to get the test done.
  • Call my state senator about getting the bill to license naturopaths out of committee and ready for a vote in the state legislature.
  • As part of the LTD appeal, talk to a former coworker about having her write a letter describing the poor condition I was in while I was still working.  I need them to understand that I was working, but even then I was not functioning well.
  • Find out what happens to my health insurance if I have COBRA and I win my LTD appeal.
  • Find out what happens to my health insurance if I have MassHealth and I win my LTD appeal.
  • Apply for SSDI.  More realistically, begin figuring out what is necessary to apply for SSDI and take first steps.
  • Prepare to apply for MassHealth (Massachusetts’ version of Medicaid).
  • Talk to “Joan” about what happened with the LTD company (see the big health insurance scare for details.)  She was supposed to call me back and hasn’t yet.
  • Get new orthodics fixed.
  • Find one of the few pharmacies that sells the specific supplement I need and then drive over to get it.
  • Take new medications.
  • Keep track of dates new meds are started and any effects, whether good or bad, over the coming hours and days and weeks.
  • Continue taking all other meds.  Be careful about timing to make sure there are no conflicts.  Take first med upon waking, then exactly one hour later eat breakfast, and immediately after breakfast take the rest of the morning meds, etc. etc.
  • Do physical therapy daily.
  • Take a walk for exercise daily.
  • Follow special diet carefully.  Go food shopping more often.  Plan meals well in advance.  Never eat out.
  • Track how I feel every day and how it relates to food, activity, stress, etc.
  • Be careful to go to sleep at the same time every night.  Wake up at the same time every day.
  • Avoid stress.  Or at least try to minimize stress and to handle it well.
  • Try to have a life outside of my illness.

And that, my friends, is why having a chronic illness is like a full time job, but with a lot more stress and no income.

What’s on your list?  Share your to do’s and spread the word.  Let’s show why it isn’t just sitting home and watching tv all day.

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4 Responses to This week’s big chronic illness to do list

  1. That’s quite the to do list… That last item on the list is a good one, and a challenge I can imagine. Good luck, we’re all pulling for you!

  2. Karen J says:

    I “Like” this only because there’s no other option – “Empathize” or “Hugs for This” would be good…

    Also, because I truly admire the clarity of your writing, madear!

    Hugs and Bright Blessings ~ and Warm! wishes from the (below zero) depths of winter, 2014…

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