In Search of Christmas Spirit

big bird xmas

Most people, when they think of Christmas, think of Big Bird, the Eiffel Tower, or Spiderman.

No? Then maybe you can explain this display to me.

Found it at a local big box store today and was reminded why I don’t like to frequent big box stores.

Been searching for some holiday spirit and I don’t think this is what I was looking for.

If anyone needs me, I’ll be watching It’s a Wonderful Life.

Wait…. why is there no Christmas Pickle in this display???

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An Open Letter to Express Scripts and Accredo

Dear Patient Care Advocates,

Since the first week in November, I have placed 30 calls (and still counting) to your Customer Service Department.

I’m not asking for much – just the Humira that my doctor ordered for my rheumatoid arthritis.  For six weeks,you have explained to me that a doctor’s letter of medical necessity was missing, or that I was refilling the prescription too soon. Or that there was some kind of unknown problem and they would look into it. And for several weeks it was simply pending insurance approval.  How can this take so long?

This is a new prescription so it’s impossible to refill it too soon.  And my doctor did send the required letter. In fact, two different Patient Care Advocates have confirmed the receipt of that letter over the last three weeks. Why are you not seeing that on your screen?

On four separate occasions, a representative confirmed that all problems were resolved and we scheduled the Humira for delivery. A rush was placed on the prescription and it was scheduled for overnight delivery.  On four separate occasions, it did not arrive. Can you explain what is happening?

I have called my doctor’s office, the very nice representatives at the Humira Protection Plan, Blue Cross, CVS Caremark, and Accredo/Express Scripts.  And still I have no medicine.

It’s difficult to place the blame directly on each of the 30 Patient Care Advocates with whom I’ve had conversations.  They can only read the information on the screen in front of them. Even supervisors seem unable to unlock the mysteries of their flawed software programs and processes.  I’ve received so much conflicting information that I find it ridiculous at this point. (Or I would if I were not experiencing severe symptoms of R.A.)  I’ve documented every phone call and results because after so much misinformation, it was impossible to make sense of it.  Even with the notes, it’s still impossible to make sense of it.

My suggestion to Express Scripts and Accredo?  Please take a good look at how your system works.  It’s flawed and is causing people with chronic illnesses to go without the medication they need to go to work – and enjoy life.

And you, the Patient Care Advocates, can help by questioning the process. When a patient tells you that he or she has been out of medication for six weeks because your company has not released it for shipment, what are you thinking? If this was your child or a parent who had to go without medicine for a damaging autoimmune disease would you not be more persistent?

Hoping that the next time you tell me the shipment is scheduled it actually arrives.

Sincerely,

A Person with Rheumatoid Disease

Note:  Please feel free to pass this letter on to others. This is not an isolated problem. Perhaps you know someone whose medication has been delayed by misinformation and system errors. 

Snow Geese Ballet

Image

I heard them approaching.  The noise was difficult to identify at first, although I’ve heard geese many times before.  It took me a few seconds to realize the noise was not just a flock of geese, but thousands and thousands of snow geese flying directly over my house.  I hurried outside to be a part of this beautiful performance.

The white geese did not disappoint. Some of them were flying in the traditional V-shape, but many more of them were swarming like a hive of bees. The swarms and the V-shaped flights would continue until I lost track of time. I was completely lost in the beauty and the grace of their flight. They moved back and forth within the swarm, changing direction with such ease.  As far as I could see in the distance, there were snow geese. Wave after wave approached, flew directly over me, and then past me to a field they chose as a landing strip.

This is my first winter in a new house. I miss living in the city, but if this experience is an indication of what it’s like to live with nature outside the city, maybe it’s worth giving up my favorite Thai restaurant.

The Battle with Rheumatoid Arthritis Continues

RA pathway

On November 26, I wrote about a several week battle to receive medication for my rheumatoid arthritis. Today the battle still continues.

I’ve placed over 30 calls to my health insurance company, to the online pharmacy that needs to provide the medicine, and to my rheumatologist  in a vain attempt to speed up the system.  My symptoms have flared up to a new high and the disease is busy damaging my joints permanently while I wait.  I won’t wait quietly, though.

Others are experiencing the same frustrations that I am. And it’s not simply an inconvenience.  Our doctors prescribe medications because they are vital to our daily existence.  No one would voluntarily inject this poison into their abdomen.  This drug has no street value.  It gives me no pleasure. But I’m hoping that an increased dose of Humira will help me function without extreme pain – and stop permanently damaging my system.

I am asking the right questions. I’ve navigated the hospital and patient care system for the last 15 years for one relative or another, so I have experience with keeping on task. Each representative that I speak with has a different answer.  Three times I was told that my insurance approved this medicine and delivery was scheduled. And all three times (over the last seven weeks) the Humira did not arrive. When I called to ask about the shipment, I was told that there was no insurance approval.

I have documented my conversations all these weeks and am sticking with the basic conversations.  Although I’m extremely frustrated, disappointed, and feeling horrible none of those emotions are entering into my phone calls.  Because none of those things make a bit of difference to the insurance company or the pharmacy.

A call to my rhuematologist’s office for suggestions resulted in the nurse, Rose, serving as my advocate.  She placed numerous phone calls in the last two days to help resolve the issue.  She seemed genuinely surprised that she could not resolve the issue and have my medication on it’s way to me.  It’s oddly comforting to have another intelligent, capable being who cannot find anyone within my health insurance or online pharmacy company who can resolve the issue.  No one seems to know why the prescription is being rejected, but since their system says it cannot be shipped….. well, it just can’t be shipped.

Instead of an increased dose for an increase in disease activity, I have nothing.  I’m left with the disease and given nothing to fight it.  Willpower, positive thinking, good nutrition – not much help.

But at least there is Rose.

P.S. If anyone missed Giving Tuesday, it’s not too late to give a gift of independence to those who want to work to support themselves and their families.

The Christmas Pickle: My New Perspective

I grew up with the Christmas Pickle tradition, secure in the knowledge that this was part of my heritage – although I have no memory of my parents celebrating the tradition. It’s origin was told to me as a German-American tradition and I’ve thought of it as part of my heritage since I was a child. But it appears my childhood knowledge was a bit skewed.

christmas pickle

For those of you unfamiliar with the tradition, it goes something like this (with variations). Late on Christmas Eve, parents hide a pickle ornament deep within the branches of the Christmas tree. On Christmas morning, the first child to find the pickle ornament on the tree receives an extra present from St. Nicholas.  The first adult who finds the ornament is said to have good luck for the next year.

Imagine my dismay when I learned this is not truly a German tradition.  It’s German origin has been disputed for many reasons. One being that St. Nicholas doesn’t arrive until December 5 or 6 in Germany. So he can’t provide that extra gift for the pickle-finder.  Apparently Germany is not very familiar with the pickle tradition either.

What is the origin of this childhood memory that has just been tarnished when the truth was uncovered?  (Yes, I admit it.  I just now discovered that what I thought was common practice in German households is a myth.)

One version is traced to a Bavarian born immigrant who enlisted in  the 103rd Pennsylvania Infantry. He was captured in North Carolina in 1864 and taken to  Camp Sumter in Georgia. This story tells us that he was near death from starvation on Christmas Eve and a guard gave him a pickle out of compassion.  He credited the pickle with saving his life and once he was reunited with his family he began the tradition of hiding a pickle on the Christmas tree. (Ah, the power of the pickle!)

And Berrien Springs, Michigan is known as the Pickle Capital of the World.  Not the United States, but the world. Twice a year the city holds a Picklefest, complete with a parade led by the Grand Dillmeister. There are recipe and decorating contests, three legged races, and free pickles for all! (Did I mention this is held twice a year?  It does bear repeating.)

And I thought this was just a quaint custom that was a German-American secret.

But wait. It gets better. Take two minutes to view The Carol of the Christmas Pickle by Firehouse Dallas. For the Christmas Pickle fan, it’s well worth the time.

This year I have an expanded perspective on this unique bit of Christmas. It’s a bit disenchanting. I think I can adapt. But please don’t tell my mother. Let her keep the legends she grew up with.