A Relapsing Polychondritis story

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RELAPSING POLYCHONDRITIS 2008

 
Almost a decade after I developed Sheehan’s Syndrome another rare disease radiates through the cartilage of my body.
 
The disease Relapsing Polychondritis attacks the cartilage throughout my body.
 
Unfortunately, this rare disease is not diagnosed after numerous days in the hospital and several Emergency Room visits.
 
Doctors were alarmed and puzzled by my red ear blisters, and they decided to pump me full of antibiotics and place me on an IV Steroid Drip.
 
The IV Steroid Drip helps to stop my the progression of the Relapsing Polychondritis. Unfortunately, the hospital doctors release me, but I insist  there is something terrible brewing in my body.
 
I am exhausted and frustrated as several medical specialists questioned my symptoms. I had shown the doctors my Red Ears, and I said my red ears must be a clue to what is wrong with me.
 
I knew my Red Ear screamed, help me. I told the hospital doctors that the lobes of my ears were not being affected. At the time, I had no idea that the bottom of the earlobe does not contain cartilage.
 
Sadly, four days after my release from the hospital, I self-diagnose my Relapsing Polychondritis while I sit in my doctor’s wait area. When I was in the hospital medical specialists could not provide my blistered Red Ears and my raised discolored skin with a diagnosis.
 
As I wait in my doctor’s wait area, I type my symptoms: Red Ear, Pain, Fatigue, Blistering Skin, Discoloration of Skin, Painful Ribs into the Google search engine. Within seconds stories and photos of Relapsing Polychondritis appear from my Google search.
 
As I view the pictures of others with Relapsing Polychondritis, I know I have another rare disease, Relapsing Polychondritis. It has been several years my Relapsing Polychondritis diagnosis.  Most days I have flares of Relapsing Polychondritis. When I am stressed, tired or I have low cortisol my ears often flare.
 
When I had bad flares, I increase my steroid dosage. Increasing my steroid dose worked for awhile. Then even high steroid dosages were unable not stop my Relapsing Polychondritis symptoms.
 
Fast Forward Since 2014
 
I have existed in my Relapsing Polychondritis world for over a decade. 
The frustration that comes with RP is troublesome. As with many rare diseases there has not been extensive research and I live in a wait and see mode. 
 
Most days my ears are hot and frequently showcase the telltale sign of RP via Red Ears. 
 
My Relapsing Polychondritis has spread to other parts of my battle. This last week I sent time in the hospital battling the RP that has invaded my neck. 
 
Steroid injections help to clam down my RP neck flares. 
 
I feel like my body is at war with itself. 
 
Sadly, it is being destroyed by friendly fire. 
 
You can can read more about my experience of living with a chronic illness on the http://www.HypoGalBlog.com. The http://www.HypoGal.com provides you with helpful resources. 
 
My Best,
 
Lis a.k.a. HypoGal