[DanL]

I felt pretty much normal for almost 4 years with MDS. I had my moments of anxiety every few months, but was and am determined to live every day to its fullest. The nuisances of lower energy at times, easy bruising, and having to reduce some activities are necessary, but not limiting in my life. I spend a little time each day learning about the disease, in this case CGVHD as that is the stage that I am now in post transplant just so i have a handle on symptoms, what to ask the doctor, and then use that information to empower myself and prepare for any challenges should they come up.

For example, I have very little taste almost 4 months after transplant. I still cook new foods and try new things every day, knowing that i may not be able to fully enjoy it, but I will enjoy the process, and love seeing my family members enjoy what i am making, and also getting their feedback along the way.

I have also resolved to continue doing things that I like to do when possible, but to add items to my list that I have meant to get to so that there are no regrets. In many ways, MDS has helped me live in a way that I did not give possibility to in the past.

I am sorry if I strayed from your question, but I think that spending time appreciating all that you have and will have is the best way of dealing with the disease, of course adding in the sound treatment of your doctor, and accepting/utilizing the support of your family and friends.