Social Media – friend or foe

I admit it took me a while to embrace the social media frenzy.  It may have something to do with my corporate career where you have to be savvy with assessing people and their motives.  A couple years prior to my diagnosis I joined my first forum.  It was not a pleasant  experience, but I found a couple of people there who warned me about the bad things that could happen.

After my diagnosis I was desperate for information.  I decided to put my reservations aside.  I found a couple of resources that were helpful; places to go for research, to better understand this disease and, most importantly, friends who understood.  I found a few incredible people who shared the same diagnosis.  These are cyber friends.  While we’ve never met in person I treasure their support and appreciate all they have taught me.

One of those friends has gone on hiatus.  I am concerned for their health, but what troubles me more is the reaction of some people.  It’s like seeing hungry piranha when a fresh piece of meat is dropped in the pond.  While there have been many comments with speculations of very negative actions, not one person has mentioned concern for disease or health.

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I will never understand what compels people to be so vicious.  It could be any one of us.   Something – anything – could happen and suddenly posting in a silly forum becomes not so important.  Life happens to each one of us and while there are many who want to post about every aspect of their lives, sometimes it is not prudent to do so, maybe it’s not even possible.  Yet, why reach in the bowels of condemnation and ugliness?

Social media can be such a wonderful, resourceful tool, but it often is used to make comments that would never be made face to face.  It’s used to attack, condemn and disparage, even though you have no information or facts.

Remember, but by the grace of God go I 




How to Get What You Want/Need

Getting what you want or need in healthcare – is that possible today?  That was the topic of discussion with my rheumatologist during my last appointment.

I really don’t think much about the process of insurance.  It’s difficult to track at times, but essentially you go to the doctor, they file the information, the insurance provider determines the negotiated rates and pays their portion and then you get an invoice from the doctor for the unpaid amount.  If there is something out of the routine the doctor seeks approval from the insurance provider.   Sounds easy enough – most of the time.

But …. what happens when the insurance provider and the doctor don’t really agree.  Are we really prohibited from getting the medication or treatment that we want — one that the doctor suggests we need?

During my last appointment we discussed the results of a specific test.  I was somewhat surprised by those results and mentioned it to the doctor.  He responded by discussing medications.  While reviewing my labs, he suggested another medication I might try.  He was looking at my chart on the computer and then advised that my insurance did not agree with his choice, but they did allow two other medications.

His comment seemed odd to me.  I asked if the insurance company dictated which medications he could prescribe for a patient.  His response surprised me.

He told me that the insurance company did not dictate what he prescribed.  He then told me that if I took a prescription to my pharmacy and gave it to them along with my credit card I could get whatever I wanted.

What???  Wait – but that takes my insurance out of the picture, right?  He again said you can get any prescription you want by giving them your credit card.

I again asked – what about my insurance?  If it will not cover what you prescribe and I have to pay for it out of pocket, what purpose does the insurance serve?  I got no response.  However, once again he made the point that insurance did not dictate what he prescribed and that it was up to me.  For now I don’t have to worry about who might have to pay as the decision is to remain with status quo regarding my medications.

Months ago I wrote concerning a friend who encountered a significant issue with her insurance provider (The Scary Side of Insurance)  A treatment plan that had been approved and then denied by her insurance provider.  The issue is still not resolved after a year of inquiries.  And, as you know, if they do not pay, she is responsible.

It is not uncommon to hear from rheum-mates that their insurance will not cover a specific medication suggested by their doctor.  While some drug companies may offer assistance to patients in need, there is an application process.

This is a serious concern for patients — whether it is for a new medication or a series of treatments.

Have you had a situation where the doctor preferred one medicine for you, yet it was not the choice of your insurer?   Have you had to pay for mediation or treatment out of pocket?



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.