Right now I’m waiting for some extra pain meds to kick in.  I’m trying to tapper my Prednisone dose down from 25mg a day to 20.   It doesn’t seem to be going well.  After dinner that telltale Autoimmune Pancreatitis pain started up for the first time since I was in the hospital last.  Not good.  I’ve also been running low grade fevers in the afternoons.  I suppose I’ll be putting in a call to my Rheumatologist tomorrow.

I also need to call my Internist for an appointment to check out what seems suspiciously like a sinus infection.

And I have a handful of other medical related calls to make (including some especially dreaded ones to my insurance company).  It’s enough to make me want to go hide under the covers and go back to sleep.

I always tell people that you have to be your own advocate, but it can be downright exhausting under the best of circumstances let alone when you are sick.

But I, like so many others, don’t have anyone else to do it for me.  So I have to be my own advocate.  I have to stay on top of these phone calls and appointments and lab results and new symptoms.  But lately it just wears me down and out.  It’s a lot of stress and a lot of effort.  Mentally and emotionally.  It’s all in the details, and so much is at stake.

It shouldn’t be this way though.  When people are sick they should be able to just focus on getting better and not navigating through medical bureaucracy and red tape.  It scares me to wonder what would happen if I became completely to ill to do it for myself.  Who would advocate for me then?  There are so many people already in that very situation.  I shudder to think what kind of care they are getting.

There must be a better way.

In the meantime, I do what I have to do regardless of the brain fog making it hard to think straight and the fatigue making it hard to keep my eyes open.  Because I’ve learned that even though being a professional patient is a full time job, you don’t ever get to call in sick.

Being chronically ill it’s hard to have the energy to get through the essentials of day to day life.  Organization can fall by the wayside. But staying organized is one of the most important things I’ve done to help myself cope with my chronic illness.  Getting organized about my illness has helped me make my illness more manageable and even helped me get more out of my doctor’s appointments.  Over the years I’ve developed an essential tool set.

1. If you suffer from brainfog like me, it is crucial to write everything down.  And I mean everything.
2. If you have an important phone call to make take notes both before hand of what you are going to say and during/after of what was said.
3. Keep a symptom and pain diary, so when you doctor asks when symptoms started and how often they occur you have a concrete answer.
4. Keep a calendar of all your doctor’s appointments.  Schedule them as early as possible to get the best from your doctor.  When your doctor isn’t running late and still has energy in the beginning of the day he will spend more and quality time with you.
5. Doctor’s appointments can be stressful and it can be hard to remember what you were going to say and what was said.
   • Prepare for your doctor’s appointment by making a list of recent symptoms and questions for your doctor.  Make a copy to give to the doctor so he or she can follow along.
   • Bring a list of medications to give to your doctor.  You can use the one I made at the end of this post or make your own.
   • Keep copies of all of your medical records and bring them with you when you go to a new doctor.  This can save you from getting tests twice and help you get diagnosed if something was missed by another doctor.
   • Make sure you bring a notebook and pen to take notes of what your doctor is telling you at the appointment itself, so you won’t get confused or forget something important afterward.  (To take notes you can get a good old fashion notebook to dedicate to your health.  There’s computer software you can use to take notes.)
6. Make to-do lists as you think of things you need to do.  Whether its schedule a doctor’s appointment or refilling a prescription write it down when you think of it.  And then feel the sense of accomplishment when you cross it off your list.
7. If you have a lot of medications it can be hard to keep track of when to take what and even if you took them yet at all.  Make a schedule of your medications and check them off.  You can even get weekly pill cases and do them all in advance.  Try using my medication schedule at the end of this post if you don’t want to make your own.
8. Making lists of things you need to do or when you need to take your medication is great, but it’s useless if you don’t remember to check your lists.  The solution?  Set reminders.  Set alarms on your phone or a watch with multiple alarms or on your computer.
9. Be prepared for emergencies.  If you have a condition that requires you carry Emergency medical information on you at all times make sure it is kept up to date.  Keep an up to date medicine list on you at all times.
10. Ask for help!  When your sick you can’t do it all alone.  Ask your friends and family to help you when you need it.

Do you have your own tips to add?  Please leave them in the comments!

Files

Allergies and Medication List

Word File

Pages File

GoogleDocs

Medication Schedule

Excel File

Numbers File

GoogleDocs