Being Carefree – if only for a second!

“You know what I miss the most.  Being carefree.”

Those words stung.  Even though the video was about cancer patients, I understood the feelings being expressed.  I came across this video via Facebook.  This one caught my attention because it was posted by a photographer friend who commented on the technical aspects of the project.  For me it was not only about photography, it was about how a disease impacts your life.  It is personal.

The video was created with the idea to take cancer patients, give them a makeover with hair and makeup (not always what you expect) while their eyes are closed and put a photographer and camera behind a two-way mirror.  The photographer is set to capture the person as they open their eyes for the first time and see their makeover.  For that moment in time, they are carefree.  And, that response is captured.

The theme of the project “to capture carefreeness …… if only for a second.”

I strongly encourage you to watch the video.

http://www.mimi-foundation.org/en/ifonlyforasecond.html

The comments from these people are enlightening ….

…….. it’s very hard to accept

……………….  you constantly live in fear of an impending threat

…………………………….  it’s always on your mind

……………………………………………. you immediately stop being carefree

The video is short, under 4 minutes, but it is very powerful.

Fair ©dct 6254

It made me wonder, if I had a few moments that were truly carefree, what would I do? Then I realized at times it seems like it has been so long since I was able to be carefree that it is difficult to think in those terms.

Carefree – I would buy a motorhome and tour the country, going state to state and making photos.  I would train dogs, like I used to.  I would show dogs in conformation, like I used to.  I would move to a rural area and live in the country.  I would enter the half-marathon.  I would grow more flowers.  I would laugh more.

A chronic disease like rheumatoid changes the way you think, or at least it has for me.  I now have to consider the disease and how an activity might result in more pain and stiffness.  I have to consider the side effects of the meds.  I have to consider fatigue.  I have to read and research to stay updated on the latest information concerning the disease.  It is always on your mind.

If you could be carefree for a few moments – what would you do?

Donna

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The Scary Side of Insurance

My parents always stressed the importance of having insurance.  Since my dad was self-employed he had to take a different approach to securing medical insurance.  He was fortunate for many years to be able to get his insurance through an industry association he belonged to.  However, after he retired they informed him he was no longer eligible and would have no insurance at the end of the month.  It was a stressful time for my parents as the provider they decided to go with would not insure him for one year due to a previous medical issue, but everything worked out eventually.

Fast forward to this past week.  A friend of mine was diagnosed with cancer last year.  She has insurance.  The doctor began with one type of chemo and then decided it was best to go with another chemo drug.   The insurance clerk at the doctor’s office told the patient they would call her insurance company and get approval for the chemo.  The clerk then called the patient and said it was approved to begin the treatment.  She began this second chemo drug last December and has had 15 treatments with it.  Fortunately, she has had a good response with this second drug and is currently in a maintenance protocol. Everything is great, right?  NO!

Here’s the scary part.  She just received an updated benefit statement from her insurance company.  She didn’t understand why it showed a significant amount owed for each chemo appointment.  She called the insurance company.  The rep told her they would not cover the second chemo drug.  She had a lengthy call with the rep, but he was firm that the Review Board had made their final decision and it would not be changed.  It should be noted this is not a clinical trial.  The second drug they selected has been used for some time, with success, on her type of cancer.

She was confused and terrified because now the denied costs tally about $25,000.  The doctor’s office was closed when she called them so she was left to worry about this all weekend.

I’ve been trying to help her figure out what to do next, but I have never heard of this happening before.  I do not understand how a doctor can get approval and begin treatment for a patient, only to have the insurance company later take it to a Review Board and deny the coverage for treatments that have already been completed.

Please say a prayer for my friend.  Stay tuned!

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I share this story about a cancer patient because I realize now how easily it could happen to me – a patient with a chronic disease.  It’s scary – and how can we possibly protect ourselves.

Giving . . . . . Wisely

I’ve always heard the ol’ phrase ‘it is better to give than to receive.’  But just what are we “giving”?  Money? Tangible items?  Time?  Expertise?  There are many ways to give.  But – how many times do we really sit down and consider what we are giving to?  Do we ever research the organization and read about their mission, their vision or their goals?  What about the person who heads the organization – do we ever consider the level of leadership this person gives to the organization?  How is our donation used?

I have certain charities I routinely support.  Since my diagnosis I have supported a foundation somewhat relative to this disease.  Earlier this year there was a exposé on them that uncovered some facts I was unaware of.  What I learned changed my thinking.

This year I also became aware of another organization.  This one is special to me for two reasons.  First, it focuses only on the disease I was diagnosed with.  Second, I really like what they are doing and the goals they have established for where they are heading.

The Rheumatoid Patient Foundation (RPF) is the organization.  Their vision is a world where no one suffers from rheumatoid disease.  Their mission is to improve the lives of people with rheumatoid disease.  They reference concepts like teamwork with patients, integrity, advocacy and support.  The founder of RPF is Kelly Young – you  know her as R.A. Warrior.

I encourage you to look at RPF and what they are doing.  Consider becoming a member or make a donation.  It is critical for people who live with rheumatoid disease to have an advocate and RPF is solely focused on this disease.  They are a 501c3.

In this season of sharing and giving, please consider supporting the Rheumatoid Patient Foundation.  Thank you.

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Rheumatoid Patient Foundation