How to stop kissing frogs…

As a patient, you expect your doctor to be the expert in your medical condition.  Finding a good doctor, especially a specialist, can be difficult.  It’s supposed to go like this:  You go to see the doctor when you are not feeling well, they write a prescription, recommend a treatment, and you go on your way with the expectation that you will feel better soon. This is often, not the case for people with a chronic illness like Rheumatoid Arthritis, Spondlyoarthritis, or Lupus, etc.  Dreading the doctor is a common symptom of fighting a chronic illness.
You see, people with autoimmune issues like RA respond to medications differently.  What works well for one person, gives another terrible side effects or does not work at all.  Sometimes, finding the right medication to relieve your symptoms is a trial and error process.   It can be frustrating, and quite often you end up feeling worse than before you started.  About a year ago, someone asked me why I became a patient advocate.  I responded that health care had to stop happening to me and start happening with me.  Taking more control of my relationship with my doctors is part of that process.
Here are some tips that help me maintain a cooperative relationship with my doctors.

1.  Keep a diary or symptoms log.  Quite often when I go to the rheumatologist it tends to be on the day when I am feeling good, so my doctor doesn’t get to see me when I’m actually not feeling so good.  Subsequently on days when I’m feeling bad my rheumy often doesn’t believe that my medication is working for me.  This is why keeping a symptom diary to document your symptoms over a longer period of time is important for your doctor to see.  There are several apps on the market that can help you rate your daily pain, log your food, take photos of your joints, rashes, etc.  Two of my favorites are:  

My RA by Vectra/Cresendo (http://www.trackmyra.com)
Arthritis Power (http://arthritispower.creakyjoints.org)

Big Ugly Knuckles 

2.     Photo or video documentation.  Providing your rheumatologist with photos/videos of swelling and or discoloration can really help them to see how your medication is working or not working for you.  A photo is sometimes speaks louder than words.  My RA app allows you to take photos. My cardiologist gave me a hard time about taking so many medications (to treat RA, Fibro, thyroid disease and high BP).  I whipped out my phone and showed her my swollen joints.  She winced and never said a negative word about my medication again. 

Write it down!

3.     Write down any and all questions that you want to ask and/or side effects you are experiencing. Make a point to write stuff down as you think of it.   Often when you get to the doctor’s office, you forget to ask those questions or mention a side effect that popped up between visits.  To put it simply, Brain Fog stinks.  If I don’t write it down, I get all mixed up and forget to ask those specific questions that came up in the 3 month time span since my last appointment.  

4.     You have to find a doctor who is willing to work with you.  Having a good relationship with your rheumatologist is critical for your health.  I kissed a lot of frogs until I found a rheumatologist that actually listened to me.  I left my first rheumatologist after I asked her how long until medication made me feel better.  She responded with, “It took a long time for you to MAKE yourself this sick.  It’s going to take a long time for you to feel better.”  (Blaming the patient…we’ll discuss that topic at a later time!! ) I literally had a breakdown hearing that. I sat in my car in a parking lot and sobbed. If you make me cry, you are not the doctor for me.  I fired her.  
Then I met an amazing rheumatologist who got me to a better level of functioning.  Four years later, she sold her practice and moved so I was on the hunt again.  My third rheumy was a recommendation from a friend.  He reviewed my file then told me I had nothing wrong with me and I should stop taking all of my medication.  I asked for another opinion from someone else in his practice.  That doctor wouldn’t go against the first doctor’s recommendation.  She told me I could “try” going off my medication to see how I felt.  Neither rheumy could explain to me why my joints were all swollen and red, and one of them had no problem telling me “Nothing is wrong with you.”  I didn’t go to medical school or anything,  but swollen, painful joints indicates a medical problem!  If you make me feel crazy, you are not the rheumatologist for me.  I fired them.  Eventually, I found my current rheumy who is amazing.  She looked at my file, examined me and said, “We can do better.” I thank God for her every day.

5.     Make sure your rheumatologist communicates with your GP or other specialists.  Ask your doctor to send a letter to your other specialists after your visit.   This prevents drug interactions and/or miscommunication relating to your illness. These diseases overlap and medications can cause all kinds of trouble.  Open communication between your doctors is critical for good health.  For example: I had been having issues with my blood pressure for about 2 years.  It was running 150/90.  My specialists were telling me it wasn’t good.  My GP’s assistant kept telling me I was fine.  My specialists were not happy.  Finally, I made a specific appointment to discuss my blood pressure because I knew my new biologic would throw my bp even higher.  I was trying to be proactive.  The PA looked at me and said, “If we put you on any more blood pressure medication you will pass out.”  I left deflated because I knew in my gut I had a problem, but after 18 years with this practice, I trusted their judgment.  Two weeks later I ended up in the ER with a BP of 200/125.  I never stepped foot in that GP’s office again.  I take partial responsibility because I didn’t have my specialists report to my GP.  He was out of the loop and the PA wasn’t the right person for me to be talking to.  If my GP had received a letter from my rheumy, gyno, and endocrinologist, maybe he would have listened.   Lesson learned the hard way.  Turns out I had damage to my left renal artery and my heart ventricle wall due to my high blood pressure. The person who needed to hear me, did not.  If you don’t take my concerns seriously and I end up in the hospital, you are not the doctor for me.

Managing your disease can be a full-time job.  Navigating multiple specialists can be especially difficult.  Make sure you make the time to have a good relationship with your doctors.  It goes a long way in helping you find your way to better health.   Hopefully, these tips can help you navigate towards a positive patient-doctor relationship with the doctor that is right for you!

Teamwork!

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2 thoughts on “How to stop kissing frogs…

  1. I kissed a Frog with my first Rheumy. He was a great doctor with the personality of a rock. I decided I would never again have a doctor who didn't first laugh when I visited his office. My currently doctor is a hoot. I love doctors with a sense of humor.

    Like

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