The Follow-up Appointment

I have hesitated writing this post for several weeks.  Yes, I went back.  I really did.  I returned for my follow-up appointment with the rheumatologist.  Nervous.  Concerned.  Apprehensive.   So many emotions, but armed with my questions.

I wanted to discuss the results of the Vectra DA test.  I also wanted clarification for some of the other comments the doctor made, such as exactly what is my diagnosis.  I mentioned this in my post Patient Frustration with Physicians.

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I realize I’m typically a very serious person and don’t joke much.  However, I really don’t see any reason to apologize for this since illness and disease are not something I would joke about.  Apparently the doctor has a difference of opinion.

When I ask a question, I expect an answer.  It’s really a fairly simple expectation.  The answer can be brief, but enough to give me some knowledge to walk out the door with.  I can find reliable resources to read once I have a starting point and I rely on the doctor to get me started with his ‘expert opinion.’

It is typical for this doctor to answer a question with a question.   I told him of my concerns with the outcome of the Vectra DA test.  I asked about a supplement he recommended.  I asked about my diagnosis.  Each time he answered my question with another question.

I felt like I was dealing with a relative of the Riddler in a “Batman” movie.  So I suppose I now need to become the caped crusader for reliable healthcare responses?

I finally got a few answers, but I have to admit, I still have no clear direction.  Frustration should not be part of healthcare, much less a doctor’s appointments.  I remember my wonderful pediatrician, Dr. Perry.  He was great — understood my fears, answered all my questions and made me feel very safe and cared for. I didn’t worry when Dr. Perry was in charge.  What happened to the “good old days?”

I don’t envy what doctors have to endure today as they deal with insurance providers, government regulations, mandates for electronic records, etc.  I appreciate their wisdom.  All I ask is that our time together be beneficial to me.  Now to figure out what I think about the options of where to go from here.

What do you think about healthcare today?



After the movie ……

Recently I posted about seeing the new movie called “Words and Pictures”.  One very special part of this movie is the lead female character has rheumatoid arthritis.  I enjoyed the movie.  Even more, I am very grateful they included a character with rheumatoid disease.

I think it is safe to say most, if not all of us want people to understand this devastating disease.  I hoped this movie would do something to help the awareness of rheumatoid and give people a better understanding of just how devastating the disease is.  Did it?  I’m not sure.

I had a friend go with me to the movie.  As we left the theater she commented about the lead character and made the assessment that after she had surgery on her knee she was “all better.”

I guess we cannot change the world in one day or with one movie.  But – we can hope!

How do you educate others about rheumatoid disease?

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Words and Pictures (the movie)

I could take this post in several directions.  Words and Pictures could be about me since I love to write and I am a photographer.  In fact, I could write many posts concerning that topic.  However, this post will be about the new movie Words and Pictures.

Gerald DiPego wrote a wonderful romantic comedy about two rival teachers, one teaches English and the other an accomplished abstract artist who now teaches art classes. What makes this movie unique is the art teacher has rheumatoid arthritis.  DiPego wanted both lead characters to have their own struggles, so the female lead has rheumatoid.  However, DiPego has a family member who had rheumatoid arthritis so he was able to get their input.

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Juliette Binoche plays the artist who has rheumatoid.  She stated in interviews that she met with patients and physical therapists in order to better understand the disease and how it impacts daily life.  She also made suggestions how the character could compensate and adjust with her disease by laying across a chair to paint or using larger brushes since she struggled to hold her brush in the traditional manner.

Personally, I think she did an excellent job portraying a person with rheumatoid disease.  Her struggles with everyday, routine tasks are real and relatable.  She shows the physical inabilities and frustrations of not being able to do what you once could do – in her case, art.  Can’t we all relate to that?

I believe this story touched me because I am involved in the world of art.  I had purchased my dream camera just prior to the time I was diagnosed with rheumatoid.  When the disease hit me full force, I could not hold my camera.  It was too heavy and I was too weak.  It was heartbreaking.  I remember sitting in the chair, unable to stand without assistance, wondering what my future would hold. I had no idea if I would ever take another photo.  Hope seemed so far away.

One comment in the movie that touched me deeply was made by Binoche’s character.  She was relating how the disease had changed her and said she wanted to do things again because she never knew when she might not be able to do it.  I can relate to that thought.  One of the many things this disease has taught me is to enjoy what you can, when you can because you never know what tomorrow may bring.

I am very grateful we have writers, like Mr. DiPego, who choose to have a main character in a movie with rheumatoid arthritis.  I am also grateful for those in acting, like Juliette Binoche, who are willing to take the role of a character with rheumatoid and go to the extent of researching to learn about the disease in order to portray it accurately.

If you get a chance to see the move, I think you’ll enjoy it.



Compliance – the Dilemma

Recently I posted on the topic “Are You Compliant?” after reading an article in a medical publication. It dealt with the problems physicians have because patients are not compliant with taking their medications as directed.

Compliance is more complicated and not just an issue specific to patients. Compliance requires participation from all parties.

Here are the relevant concerns:

1. Physician. When I arrive at my appointments the nurse reviews my information and specifically, my prescriptions. The doctor has made two changes to my prescriptions with regards to dosage in the past 18 months, but while those changes were given to me during the appointment, they were not modified in the records or with the pharmacist.

2. Pharmacy. When I arrive at the pharmacy I find the previous (higher) dosage is still on the label.  I told the pharmacist it was not correct and he advised he could not change it unless the doctor provided the change.  I understand their protocol.  I have advised the doctor and nurse, but no corrections have been made.

3. Physician (part 2).  During my last appointment I advised the nurse the dosage was incorrect. She was going to make the correction on the chart. When the doctor arrived and reviewed my chart he read the dosage, but it was still incorrect. I told him he changed that number of pills several appointments prior. I asked if he was going to correct the dosage in my chart and with the pharmacy. His response – ‘I can if you want me to. It just means you’ll have some extras in case you ever need them’.  (Extras?)

4. Insurance Provider. I received a brochure from my insurance provider explaining how important it is to take my medications as directed. They have my medical and prescription records. As they monitor those prescriptions it would appear to them I am not taking the medications as directed based on purchase records – I’ve been purchasing on a six-week basis instead of every four weeks. This is due to the physician not correcting the records concerning dosage.

5. Pharmacy (part 2). I asked the pharmacist about the dilemma. She checked the records and it still shows a higher dosage. As for accurate records, she said it depends on the doctor. She continued that certainly if the dosage went up they would need to have it on record, but if it went down, it just depends on the doctor.

So my dilemma is:

(A) my doctor apparently thinks it’s ok to have extras around in case I need them (am I supposed to determine that?)

(B) the pharmacist can only change the prescription if the doctor notifies them

(C) my insurance provider has the impression I am not taking the medication as directed.

(D) I do not want an issue with my insurance provider.

(E) If someone looked at my prescription it would not present the correct dosage, which could be critical in an emergency situation or with a new physician.

To date, it remains unresolved.  I only hope the next time a medical periodical writes a story on compliance they might mention the part about how important it is for the physician to provide accurate records – the same information given direct to the patient.

Your thoughts?





Invisible – Accepting or Rejecting the Role

I have heard rheumatoid disease referred to as an invisible disease, like many other chronic diseases.  It has been classified as an invisible disease because while you may look ok to others and keep going with work and responsibilities, inside you are dealing with pain, fatigue and other ongoing symptoms of the illness.

I was watching Dr. Phil today – ok, at least it’s an entertaining show that helps me pass the time when I feel terrible.  His second guest on the show was a woman who had fibromyalgia.  The woman described her pain and fatigue.  She was concerned for the negative impact her illness was having on her marriage. She said she felt she was not living, only existing.

Then her husband spoke of how her illness was “frustrating” and that when he was on his way home from work and she’s tired and in bed, his thoughts were “oh, no, not again”.  Then he said “it really does bring me down and puts me in a bad mood.”

Are you kidding me?  But wait, how many of us with these ‘invisible’ diseases are misunderstood by those around us – not just a spouse, but family, friends, employers?


When we were kids, my brother played little league baseball and my dad used to hit grounders to him for practice.  I was only six at the time, but well remember my dad telling me to put on the glove and he would hit one to me.  The first grounder hit a rock and caught me right in the throat knocking the breath out of me.  My dad had a quote – ‘pick up some dirt and rub on it.’  Even at six I didn’t think that would help, but I did try to be tough and keep going.

Even now I find myself doing the same thing – be tough and keep going.  However, when you’re talking about a disease, is that really the best thing to do?  After five years of struggling to keep up with what I used to do, I have finally (finally) come to the point where I have to set more limits – and, unfortunately, those around me often don’t understand.

We hide the pain and fatigue, we push when we shouldn’t, we pretend things are normal when they are definitely not.  Invisible, yes!  But – we have the ability to accept or reject the role of invisible.  I no longer care about being a superhero.  I want to be understood.  I want to take better care with how I spend my time … and energy.  I want to enjoy more.  I want to be an advocate, for myself and others.  I want to encourage.  I want to understand and accept this new normal.  I want to surround myself with professionals who will help me, not frustrate me.

I want to live – not just exist.

Want to join me?