Commentary: The I.V. League

Whether by design or not, my Lyme Literate Doctor (LLD) administers all the intravenous drugs in a communal room.  This room fosters socializing with the other patients and sharing of war stories.  I can’t emphasize enough the importance of being with other Lyme patients (LP) to encourage you, educate you, share laughs, and to explore new treatments and treatment efficacy.

When you’re with a group of chronically sick people, all with a common illness and all tethered to a wall for hours, you easily drop your guard and open up in a way that rarely happens in life; except maybe those first few days of summer camp, or going into  the army, or that first week in college.  You find yourself amongst people from all walks of life, all ages, and all professions.  People you probably would have never have met otherwise.  And you find yourself in survival mode bonding with people as if they were family.

At first, you awkwardly introduce yourself as if you’re in rehab:

“Hello, my name is Rob and I have a drinking problem.   With the facial palsy, I can’t hold the coffee in my mouth without it dribbling all over my chest.”

Then the others chime in with their stories, experiences and nightmares.  Oddly enough, you find that there is a common pattern amongst the stories.  The stories are chuck full of medical denial about LD; inconclusive Lyme tests;  and the lack of LD knowledge in the medical community.  And that’s where the real education begins; and that’s when we begin to understand the realities and politics of the medical system.

You learn to distrust the Insurance companies, the CDC, the IDSA, non-LLDs.  The only ones who have your back are your LLD and your brothers and sisters at the I.V. league. 

With all their love and support, your own family doesn’t fully understand what you are going through.  They can’t quite understand why you don’t see other doctors, and why you don’t follow the advice of these non LLDs.

You seek out the comfort of the other undead, the Lymees, the ones who give you the knowledge; and the encouragement to persevere.  Without their input, you would be lost.  But the I.V. League is your second home, your second family.


Commentary: The Undead –

~ by Rob on August 18, 2010.

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