I’m not complaining I’m alive but being alive came with a great price. Thank God for the groups I’m in, especially the cGVHD group. I had no idea some of the things happening to me are related to my stem-cell transplant.
When things are out of the ordinary it’s easy to think it’s something I have done but I’m learning it’s more than that. Most of the time, it’s ALL related to my GVHD.
I’m not going in on the details but now I know the things going on right now are quite frankly out of my control and is the reason my body doesn’t look like it did before. Not only have the changes occurred on the inside of my body but on the outside too. It’s just another symptom or symptoms that I need to address and cope with.
Sometimes I feel like an alien in my own body. I hate going anywhere. I hate being seen which in turn has affected how I relate to the world around me such as my job and the relationships with the people in my life. It’s exhausting to pretend to be healthy (mentally and physically) every single day.
Some days I just cry and want to give up. But when I hit that low I try to tell my self it could be worse. Cheer up, buck up, and don’t allow it to bring me down.
I’m not looking for sympathy or any words of comfort. I’m just sharing what my ‘new normal’ is. It’s always changing and always leaving me with more confusion and questions.
They try to prepare you for what could happen when you choose to move forward with a stem-cell transplant but it all goes in one ear and out the other because you literally are given the option to live no matter the cost or accept your fate and die. Sometimes it felt as ‘luck’ to be able to make that choice. Many people are not given the choice and their life is taken from them in a moment. I had a choice. To live or to die.
I question if that was the right choice. Sometimes I wonder was this choice given through the Devil rather than God because of this ‘new normal’ and all the symptoms that came with it and other times I ask ‘is this God giving me a chance to speak of my suffering to help others’. To help others cope with their own struggle. To help others use their own faith or turn to faith to help carry them through.
There’s are so many questions with so many that will go answered. I need to trust God with the decision I made and trust him through the process. And the days when I feel weak, I need to turn to him for the strength and relief I am seeking and wishing for.