Being our own Patient Advocate

We are the best advocates to ensure that we receive that quality of care that we deserve.  However, it is tricky to advocate for yourself when you are in extreme pain and/or exhausted.  So here are some tricks and hints.

1. Make sure you know your disease/illness.  Knowing the right questions to ask will keep your doctors and nurses on their toes and at the top of their game.

2. Know your medications.  Know the side effects of them and make sure to report anything unusual immediately.  If you do not get a response in a timely manner from the staff, tell them you are having an allergic reaction.  That should get them moving quickly.  While some reading this might say you are telling a lie, if you are having a new side effect from the medication, you don't actually know that it isn't an allergic reaction.  Allergies don't always happen from the first dose - just like allergies to bee stings might not crop up until you have been bitten 10 times.

3. Keep a journal (if possible) when you are in the hospital of the doctors who are coming to see you.  If that is too difficult, ask for a business card from each of them when they stop by.  They all have them and should not have a problem giving you one.

4. Keep a journal of your office visits with the doctors - both specialists and general practitioner.  Write down what transpired, any new medications, any suggestions the doctors gave, blood pressure and pulse.  It might seem like overkill but it gives you a very good set of information to see changes happening.  For instance, my pulse rate used to be very low and over time it has risen.  I brought it to my doctors attention and asked if I should be concerned.  EKG's were ordered and over the last 6 months I have had 3.  Nothing is wrong with my heart - it is great (phew).  We were then able to analyze it and recognize it as a response from my body to being in constant pain.  It also helps me know that since my "resting" heart rate ranges from 90 - 110 that when it "spikes" at 140 it isn't as drastic as a doctor who doesn't know me or my history may think.  While they may be freaking out, it keeps me calmer knowing that it is just a jump of 30 or 40 beats per minute which really isn't that big of a deal.  Most people rest around 70 and no one freaks out if they are at 110.  See the correlation?  By the way, I am not advocating for self-diagnosis, I am advocating for knowing our bodies unique way of handling pain and helping to keep us calm as we look at the big picture.

5.  Get a medic alert bracelet.  Even if you don't have a neurostimulator or a medical allergy, the medications you are taking are important and many have withdrawal if you stop taking them.  Wear the bracelet or necklace for your protection in case you become unconscious.  Not only will they know your medications and any possible interactions from how they may need to treat you, they will also contact your doctor who will help manage your care.  Most people think that medic alert are just for those with an implant, an allergy, or a disease like diabetes but they are so important for those of us taking multiple medications.

6.  If you have children, teach your children to not only call 911 in case of emergency but also to tell 911 (or the police/bystander if it is a car accident) that they need to call medic alert about your medication and history.

I am sure that once this posts I will think of a million other helpful suggestions but these will get you started - especially if you are a newbie to the chronic pain club.  If you are, welcome and I am sorry that you are on this journey with me.  I can't fix it but I can offer you friendship and the comfort of knowing you are not alone.