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Old Tue Jan 29, 2019, 05:44 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,520

Sally is right.

I know what you're going through too, because it was the same for me: a wife with AA, minimal success with ATG, hoping she didn't need a transplant, kids in school, a full time job, etc. Stress from all sides, with no relief in site.

Seeking help wherever you can get it is more important than I realized at the time. I thought I could just take charge and manage everything myself, including learning all about AA so I'd understand the doctors and know how to help my wife day to day, plus managing the household, the bills, and the rest of the family. But I learned that nobody can keep up that pace month after month, and other people were willing to help if I just asked.

The disease is rare, but your circumstances aren't. Caregivers have a tough role that often isn't recognized, because everyone is focused on the patient.

It's really hard to get though days when things aren't going well, especially if you are trying to put on a brave face for everyone else's sake. I found that optimism helped. I hope that you can think of this as a temporary setback (or a low point) in life, and try to look forward to the time when things will get better. You may be burdened, but everyone is on your side.
Founder of Marrowforums and caregiver for my wife
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