View Single Post
  #8  
Old Tue Apr 17, 2012, 02:31 AM
mausmish mausmish is offline
Member
 
Join Date: Mar 2010
Location: Maryland
Posts: 453
Beth, I'm sure Elaine's (Bebop's) comment was well-intended. If you read through her past posts, you'll see she went through a lot with her dad before he lost his battle. She can relate very personally to the helpless feeling of not being able to do more for someone who means the world to her. She's always been very supportive to others as well. The members of this forum are here because their lives are touched by marrow disorders, often in terrible ways. I don't recall ever seeing a mean spirited or flippant comment. This disease makes us all crazy and frustrated at times and we all have our own ways of coping. In many ways, it's harder on caregivers than on patients. We patients concentrate on trying to get better while our caregivers are out there doing everything else and wanting with all their hearts to somehow make it all better. I know my husband has been through hell for me. MDS is a rare disease, and often difficult to diagnose because it is not a single malady but a collection of related ones about which much is still unknown. It can be especially difficult to find experts in MDS and it's common for patients to get multiple opinions before finding a course of treatment that works best and common for forum members to seek opinions about different doctors or treatments or treatment centers. This informal networking is invaluable. We learn through each other's successes and failures and we celebrate our victories, even the smallest ones, and commiserate in our sorrows. I'm sorry to ramble so much but it is late and I am tired. Sending lots of healing thoughts to you and your husband. Karen
__________________
Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
Reply With Quote