Asked by ter303 on Wednesday, April 3, 2013


    How are you doing with MDS. I'm 7.5 months old and doing pretty good. My blood count still goes up and down. But dr.s are happy with my results. I do feel blessed and count my many blessings. I'm dealing with an impossible family member who doesn't think my disease is valid. So I'm staying a way from her. She thinks I shouldn't be so concerned about the things I can and cannot do. It's just a bunch of petty stuff that I really don't want to deal with. Is that inconsiderate of me? I have a second chance at life and want to be around positive people. I would really like to know how you all are doing.

    4 Answers from the Community

    4 answers
    • SueRae1's Avatar

      I have not had MDS, but it is a very serious disease. And it takes your autoimmune system months to rebuild itself. I watch myself pretty careful to make sure I don't over do it or am exposed to people and situations that can make me ill.
      I still do things I enjoy, but try not to over do it. I take Pilates but went down from 2-3 classes a week to 1 private session a week, that is geared to where I am on the day I show up. I read, I watch movies - via stream or DVD. I see friends - but only a few at a time. etc.

      I have some friends that I barely see or speak to since my diagnosis, they just don't get it, how tired I am, how much time I need to spend with appointments, etc. I decided to stay with those who were positive and supportive, and deal with the rest as little as possible.

      over 5 years ago
    • AlizaMLS's Avatar

      Hi ter303,

      My name is Aliza and I'm a Breast Cancer patient as well as being a retired Medical Librarian. I spend time on this site and elsewhere practicing my profession, which means offering some advice (mainly non medical [Librarians have an ethic not to practice Medicine-it's also illegal], but I offer referrals to doctors, hospitals/institutions, agencies, etc. and research when required or requested.

      I have a different way of looking at questions than the other people on the site do because of my training as a Librarian. Sometimes, people think they're asking only one question, when there are actually several buried in their post. It's my job to figure out what they're asking and give the best possible answers I can.

      Ok, first, you mentioned you're 7.5 months old. I'm wondering if you meant 75 years? The fact that your physicians are pleased with your blood counts is very good. There is almost always someone in every family (I can tell you from experience) that is difficult and thinks their life is harder than yours. Usually this person is a very selfish and ignorant person. Avoiding her seems like a good strategy.

      Something else I'd recommend for you for support for there positive things in your life is CancerCare! Their Social Workers are wonderful to talk to-it's not like "regular therapy". They specifically trained to deal only with the stresses hat one faces in being a Cancer patient and caregiver (if your caregiver would like to be involved). You can see them in person or talk by phone. They are very sweet, and positive and good at helping deal with situations such as you bring up with a difficult family member. I hope you take the time to call them.

      If you click on the purple box on the right, you'll also see a list of other resources that might be helpful to support you on your journey!!

      If there's anything else I can do for you, please let me know. You can either message me here or
      email me off the site. I hope some of he ideas I've given you are helpful to you.

      Warm wishes,

      over 5 years ago
    • merry's Avatar

      My MDS is holding steady. Diagnosed in 2009 I am always surprised with my blood results. I never know if I'm gonna be safe or " in jeopardy". I am always tired so I can't judge how my results will turn out. I am lucky to have a family that understands and accepts it. Unfortunately all my family live up North (Ohio) and I am the oddball that moved away. It is not inconsiderate of you to stay away from a family member that is not sympathetic to you & your disease. Glad to hear from you !!!

      over 5 years ago
    • Debbiem's Avatar

      Surround yourself with positive uplifting people. I have posted positive saying around my Mothers house when she is feeling down. MDS is a disease that my mother has as well as many others. She does everything her doctor says and has alot of family support. Stay well!

      about 5 years ago

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