Has anyone been diagnosed with Blue Bleb Rubber Nevus or Beans disease. Like a body full of AVMs wasn’t enough. I will keep reminding myself that I am grateful that none have been in my brain and the nerve damage has been manageable. The blebs are in my hands, toes, lips, tongue and throat (that they know of). The thought of embolization or radiation in my mouth terrifies me. I’m a teacher and therapist, the thought of losing my ability to communicate is unfathomable. I am trying to take it a day at a time, but I find myself playing the what if game in my head. I have been in and out of treatment for 30 years. I know I will get through whatever comes my way - just somedays I want to curl up, pout and eat chocolate. Thanks for listening to me vent. Hoping to find at least 1 other Beaner out there to compare notes with.
Take care Paige
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