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August 23, 2014

I am on a business trip. working long days on my feet.  I leave my hotel at 7am and return at 9pm.  My knees are killing me and I would like new ones, please.  I am also dealing with intense hot flashes and my comb seems to have more hair than usual in it in the mornings.  

The excessive knee pain could be from too much standing or from the disease hitting my joints or both.  The very first second I am in my hotel room, I am in bed with my knees propped on pillows hoping that rest will help.

The hot flashes could be from middle-aged womanhood or from the increase in my drugs.  Super fun, especially when my glasses fog up!  I don’t know what I can do to control the hot flashes, so I am just living with them.

The increased hair loss could be paranoia, a result of different water and shampoo in a different city, or from my increased medication.

I wonder a lot about things, but basically I am enjoying my work, my coworkers, and exploring a new city.  

Dear Relapsing Polychondritis,
You aren’t the boss of me.
Love, Me



From → Uncategorized

  1. Carole Boshart permalink

    I am at home, but working. I too am finding too much hair in my comb, too much pain in my knees and too much heat on my brow. While being at home offers a slight comfort, not enough to offset all of the above. Even though we have never meet and do not share any genes, we are sisters, as are all of those who have RP and suffer. I am not forgetting our brothers in RP either. When any of us suffer all of us suffer, because we all have the same darn thing! It is not a empathic suffering but an actual suffering. And that actual suffering is what brings us closer together. So know that you are upheld and blessed as you pull yourself through your days on the road!

  2. nolongeraboutme permalink

    Thank you, Carole. I write this because we are all in this together.

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