Hi Krista,
Like everyone who reads these forums, I can say I do understand many of your worries and concerns. A year ago in August, I was diagnosed with MDS Intermediate 2. Once I received the diagnosis, I got on the computer and looked at as much information as I could and found most of all of it to mention life expectancy estimates. This was truly depressing. Fortunately for me, though, I have had previous experience with the specter of a "terminal disease." In 1986, I was diagnosed with PKD, a disease of the kidneys for which there is no cure. At the time, I was raising young children alone - I had divorced in 1989 - and had the unfortunate experience of a doctor announcing the disease and telling me it was incurable and I would "die young." A previous experience, January 15, 1990, I suffered a ruptured cerebral anneurysm which left me in the hospital for 2 months during which time I had to learn to walk, talk, and cope with a loss of short-term memory. Even though my docs told my family that I would not survive this incident and that even if I did, I would not be able to lead a normal life, I did survive and with virtually no residual side effects. In fact, my children are grown, I have returned to school and completed 3 additional degrees, and even have even lived to meet my new grandbaby. The reason I am relating this information to you is that there is HOPE! I am not any kind of a super person with extraordinary abilities. I am just like anyone else. The only thing I can offer you is my strategies for staying positive and living my life to the best of my abilities. Things have changed over the years. With a new diagnosis or the ramifications of one of the diseases, I try to be as kind to myself and I can. I used to be a very driven person who was much harder on myself than probably anyone I associated with. I had to learn how to be kind to myself and modify my expectations for myself. This doesn't mean trading your dreams for what you want to accomplish. It simply means allowing yourself the luxury of putting your health first. I just had to apply for "family medical leave" to protect my job and, more importantly, my insurance. It wasn't easy for me to admit to my employer that I would need to take extra time off from my job to have treatments, cope with infections, or just take a day to rest. I was always the person who who give 120% and push myself to the farthest limit - not any more. I still give my best to everything I do, but I do this with the understanding that my body cannot do the same things it could a couple of years ago, a month ago or even yesterday - but that's OK! You are struggling to maintain when your body is fighting a disease nobody can really understand unless they have lived with it. My friends, family and co-workers cannot believe I have 2 "terminal" diseases. "You look so healthy and you are always smiling," they tell me. Although this type of statement is not inaccurate, they don't see me when I give myself my "pitty party" time. When things are getting really rough - this happens mostly when I am fighting some kind of infection or my blood counts are really low" I give myself a maximum of 24 hours to stay in bed and cry my eyes out. If I'm feeling sad and can't bring on the tears, I'll watch a movie that I know will open the flood gates. This brings on an indescribable sense of relief. Once I've cried and cried, I tell myself it's time to close the gates and get on with things. This works wonderfully for me. Maybe you could find a way to release all of this pent-up sadness, insecurity about the future, depression about the diagnosis, etc that will work for you. I also have a small band of folks who have genuine empathy, broad shoulders and an understanding of what I am going through from a medical standpoint - my treatment nurses and my oncologist and her staff. You might want to try expressing some of your thoughts, concerns and fears to them. My treatment staff has been awesome! I hope this helps. You can write me at any time. Just living with this disease is a testament to your fortitude and strength of character. Give yourself a hug and don't be shy about reaching out to people and asking for the help you need. I'm still learning this one. Also, try to pat yourself on the back for all of the things you can do. Your life has changed and will never go back to the way it was. Even if you do go into remission, you will have specter of the disease always in the back of your mind. That's OK. Try and celebrate the little things and don't dispair over the losses the disease has dealt you.I also exercise when I can and feel up to it. This helps so much to alleviate stress. I can't do all of things I could before, but I try to be thankful for what I can still do. You still have life and that is a gift nobody with a chronic disease ever takes for granted. I hope this helps in some way.
Kathy
