So now that my mom is back at work as a school teacher and my younger brother is a senior in high school I am felt alone living with my disease. I know every teenagers dream is to have the house to theirselves I guess, but I just think of the past. It seems to have gotten worse because of my graft vs host disease I am limited to daily activities. I tend to say I am not “normal” which no one is so, I contradict myself often. At this point in my life I wish I can experience college like every teen out there. 

Maybe One Day someone will hit me up. Lol


9 thoughts on “Venting 

  1. What kind gvhd are you experiencing? When I did my BMT I had to have a half match, as no one matched me on the registry and my sister was 6 out of 10 but she was so small so they decided to go with my mother. I will say one of the best things I’ve done thus far is visiting with a palliative care doctor. If you have one as part of your transplant team I’d definitely recommend meeting with them. I get awful debilitating pain in my joints and they keep me very comfortable. I met with them when I had the work up appointments before my transplant, but then I kinda forgot about them. After reading your posts I do know where you’re at right now. Adjusting to that new normal really sucks. I want to be able to run around and do everything I normally did and now just being active for an hour or two burns me out for two days. I can’t offer you hope that it gets better, but I can definitely give you comfort that you’re so not alone.

    Liked by 1 person

    1. I have chronic GVHD, so the whole body basically. My brother was a 10/10 match but somehow I am still rejecting it. I am taking a new suppressing med now called Rapamune since prograf wasn’t helping. What did the palliative care doctor do to help you?


      1. They manage my pain pills to keep me comfortable. They basically are symptom management and are sometimes a little specialized that my oncologists. They help with my anxiety, pain, nausea, basically any kind of physical or mental symptoms I have related to the transplant. I love them and they definitely help improve my quality of life.

        Liked by 1 person

      2. I have that joint pain too! So I guess I just treat myself with the pain med lol. Although I hate it because I feel like I shouldn’t be in pain for someone my age. Most teens are out there and don’t take any medication. They are not considered disabled like I am.


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