I can't express my gratitude enough to you people (some MDS patients and some caregivers). Your shared experiences are helping me cope and are overwhelming. As Ann was saying, he is here today and will be tomorrow. I'm learning to live and appreciate the moment instead of speculating about the future, but at the same time making preparations. Dick, thank you so much for sharing your story. If I'm not mistaken, you are on the AA & MDS foundation website correct? You're sort of famous!
Yes, if it were the other way around, my partner would go to all lengths of the world to help me. Neil, I called nurse at the Georgetown University Hospital and asked her for help so she can put me in touch with a social worker as Hopeful had suggested. Vera, you are a walking miracle. I hope a miracle can happen for us too. Leeslay, thank you. My friends and family have been great. I fully understand that my struggle is in my head and has nothing to do with anyone else. I haven't snapped at anyone. You people are the lucky
recipients of my meltdowns. Thanks for the prayers and perhaps, although my partner and I are no more worthy of a miracle than anyone else, we will be shown at least a little mercy.
Thank you all so much. I have my list of questions ready for Friday. My partner still hasn't asked me any questions about the diagnosis. I have the AA & MDS foundation patient package that I'll be taking with us to the appointment. My partner hasn't seen it yet because I haven't shown it to him, but certainly he will this Friday.
One of my main questions is, has the doctor treated anyone with the same type of MDS that my partner has, and what has been the outcome? Perhaps that's not a wise question? Any other questions that someone you wished you had asked at diagnosis but didn't have the experience enough to know to ask it?
Also, I want to be able to help other people here just as they've helped me. Once I get on stable footing with this, then I can share what I've learned with others.