It has been a challenge to write anything these days.
My disease is progressing quickly with age. In the last year or two, I started to notice a quick deterioration in my stamina and health overall.
Since October I have been hospitalized for an infection and then most recently, mass found in my uterus that caused a tiresome hemorrhage (I lost a couple of pints of blood and needed a transfusion) which is unrelated to EB. The squamous cell carcinoma is coming more quickly and becoming more systematic. Chemo is not a recommended option for Epidermolysis Bullosa for a multitude of reasons.
My left arm has aggressive cancer that has reached the muscle, if not, deeper, I was told by my doctor recently. There is the small talk of radiation as a last resort as I am running out of options to keep my limbs, and now, my life. With how poorly I feel most days, I have wondered if cancer has already sneakily made its way inside my body.
It’s been difficult at times to open up about what is happening with me because I almost feel bad to keep telling others how “bad” things have been for me. The look of helplessness and awkwardness of silence from the other end is difficult, and I never want to make anyone feel overwhelmed, yet it is my tribulation I have to face every morning. At the same time, I don’t want anyone to feel sorry for me, just being there with words of encouragement, again, not fake/false hope. Be real. I grow tired of the facade as I grow older. I’ve been living my life quite well. What brings me sorrow, is if anything happens to me, I want those I care about to be OK. That is something I am working on to trust God will care for those who need help.
I definitely cry almost every day when I have my alone time with Jesus and my pets. While my physical becomes burdened and weakened, my spirit rests in God. He withholds every teardrop ever shed, that’s so incredibly pure and beautiful to me. Not one human would ever care to do that for anyone. I have learned to set-free a lot of unnecessary emotion that is not part of my identity, God already established the person He wants and wanted me to be. People often can’t fathom how I can trust a being I haven’t seen or met, but His presence has been shown countless times throughout. I don’t trust myself or mankind itself to guide me as well as He has.
Whatever the future brings forth, I hope I can leave a lasting example of unconditional love through God’s teaching, not of my own thoughts and selfishness of the self.
Love one another. Take care of yourself and others without a coat or a hug or both.