managing a chronic illness and being your own advocate

a couple of weeks ago I wrote some notes about a blog that I wanted to write about managing a chronic illness.  Those notes included things like:

  • finding the right doctor(s)
  • learning about medications and side effects for yourself
  • how to respond to well meaning people…”my aunt, cousin friend, etc. has x disease and this is what they did”
  • keeping up with a schedule of doctor appointments, when to take meds, how to take meds and interactions
  • making sure you rest enough
  • following news stories as much as you choose to and responding when same people say “did you hear….?”

That leads me to my concerns lately.  MANAGING INSURANCE and getting your medications COVERED!!!  M.S. medications are very expensive and have an interesting variety of side effects.  It is your job to do your research and learn about all of them and decide what is best for you.  My doc will make suggestions and provide lots of literature but it is up to me to decide what to take.  That includes finding out about pricing and how insurance will cover it.  Learning what programs may be available to help you pay for these very expensive meds and following up!

I am changing meds and it’s been quite the ride.  Insurance has now agreed to cover my medicine and I have assistance to help with the $400 monthly copay.  (zero out of pocket for me!)  I have all of that in writing now but no medicine.  Why?  because the doctor and the pharmacy haven’t communicated so well with each other.

What I am trying to say is that it is our job to learn as much as we can about our health needs and our insurance coverage so we can be our own advocate when we need to be.  Call the doctor, call the insurance company and keep notes.  Is it frustrating? SURE?  Difficult?  YOU BET!  But who else is better to learn about and protect our own needs than us?!

If this feels like a bit of a rant I guess it is.  I just know first hand how hard these waters are to navigate and I just want everyone to know that you are not alone and don’t give up!  I should have my medicine by next week!! 🙂

Today’s Gatha:

Instead of being frustrated, I must accept such instances with humor, calmness, or constructive efforts to improve the situation. And when awareness is present , it displaces the kind of grasping that breeds frustration.



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