True Story … Unfortunately A Story We Hear All Too Often


Authored by Patient Advocate Lana Kirby for my good friend in Florida who lost her husband due to complications from pain med restrictions from, among other things, EDS (Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility). The pain can be debilitating. In this case, it led to his death.  The victim’s 17 year old daughter suffers from the same auto immune. Her daughter was stable prior to the Guidelines, but is now only allowed morphine patches which are too strong, but she’s not allowed anything else. Prayers to you and your children.


He now lies in his bed, unwilling to speak,

He’s embarrassed, in pain, and terribly weak.

Gone are the outings and family vacations,

Now bedbound, declining from no medication.

We can move, I plead, but he won’t budge a bit.

He won’t hear of moving. Our daughter’s too sick.

You see auto immunes are progressive, severe.

I cry late at night when no one can hear.

Speak up! Tell your story, my advocate will say.

I dare not say a word for our daughter could pay.

I try and I try, but it never improves,

I soon lose my job and the family must move.

We are still in Florida, the big Sunshine State,

And I don’t like this word, but I am filled with hate.

We downsize, we downgrade, we do what we can.

But the love of my life now feels less of a man.

Not that long ago we all enjoyed the sun.

The CDC Guidelines! We are now minus one.

It did take its toll, the destruction, decline.

This wonderful man whom I proudly called mine.

Lead singer in a band, I’d watch him with pride,

We’d then share a grin for the love deep inside.

We loved him so much, this good husband and dad.

We’ll cherish the memories of the life we once had.

My daughter’s meds cut. She’s declining so fast.

She was stable and happy. How long will this last?

She comes home from school in such pain every day,

But it’s done by our government so we don’t get a say.

I beg and I plead but it falls on deaf ears.

Morphine too strong. She was stable for years.

I have to stay humble for she needs what she has,

But one misunderstanding could hurt her so bad.

Oh our life before, I always think back,

Of how lucky we were before the attack.

My son sits in silence just missing his Dad

And fondly remembers the fun that they had.

I don’t have it in me to be angry or bitter,

When I see the comments of politicians on Twitter.

My daughter, right now, is my biggest concern,

And praying we can live on the money I earn.


Unanimous victim written by Patient Advocate Lana Kirby.

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