Nothing Much
Mar. 28th, 2018 11:57 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
motomotoyamaI fully intended to post here more once I harassed my sister, celeste_noelani, to migrate her LJ, but honestly, I don't feel like I have much to say. I'm in pain and tired all the time, and there's on so many times you can say that before it gets really old. Ever since I got my diagnosis, I sort of stepped back from my life because I suck at being taken care of or asking for help, because I just don't want to be a bother to anyone. I think I REALLY internalized my dad's attitude towards being dependent. He absolutely HATED it. I can be a really good caretaker, albeit not as warm and fuzzy as some would like, but receiving care is something else entirely. My therapist and I have been working on this for pretty much the whole time I've been seeing her, which is coming up on 7 years.
I originally thought that my life hiatus would be temporary, because I was willfully in denial about the fact that I very likely have nerve sheath tumors all over my body. I thought that I'd recover from the surgery for the tumor that was causing me pain at the time and then be able to jump back into being me. However, recovery was harder and took more time that I anticipated, and just as I was getting back to my normal, I got my second diagnosis. Even though I was not surprised at all by the results, I was devastated. The location of the tumors could be worse, but it's still in a very troublesome area. At worst, if it did cause paralysis, it would likely only be my lower body, which means that I could retain some independence. I'd be in a wheelchair, but not a hospital bed unable to move most of my body. I could eat, and swallow and talk. These are all important things to remember. And, most importantly, these tumors could grow so slowly that I only have to deal with pain, instead of paralysis. It's cold comfort, but sometimes you have to take what you get.
And while that's all dreary as hell, I do have good things going on. Next week, I'm going home to Honolulu to visit with some of my favorite people in the world. I'll swim in warm ocean water, wearing a bikini even though I'm fat. I'll eat food that nourishes my soul, even though I know it's probably clogging my arteries. I will laugh and sing with my cousins who are part of some of the best memories I have of my youth. I will try to learn a new way of being me that isn't waiting to be "better" to have my life again.
celeste_noelani, to migrate her LJ, but honestly, I don't feel like I have much to say. I'm in pain and tired all the time, and there's on so many times you can say that before it gets really old. Ever since I got my diagnosis, I sort of stepped back from my life because I suck at being taken care of or asking for help, because I just don't want to be a bother to anyone. I think I REALLY internalized my dad's attitude towards being dependent. He absolutely HATED it. I can be a really good caretaker, albeit not as warm and fuzzy as some would like, but receiving care is something else entirely. My therapist and I have been working on this for pretty much the whole time I've been seeing her, which is coming up on 7 years.I originally thought that my life hiatus would be temporary, because I was willfully in denial about the fact that I very likely have nerve sheath tumors all over my body. I thought that I'd recover from the surgery for the tumor that was causing me pain at the time and then be able to jump back into being me. However, recovery was harder and took more time that I anticipated, and just as I was getting back to my normal, I got my second diagnosis. Even though I was not surprised at all by the results, I was devastated. The location of the tumors could be worse, but it's still in a very troublesome area. At worst, if it did cause paralysis, it would likely only be my lower body, which means that I could retain some independence. I'd be in a wheelchair, but not a hospital bed unable to move most of my body. I could eat, and swallow and talk. These are all important things to remember. And, most importantly, these tumors could grow so slowly that I only have to deal with pain, instead of paralysis. It's cold comfort, but sometimes you have to take what you get.
And while that's all dreary as hell, I do have good things going on. Next week, I'm going home to Honolulu to visit with some of my favorite people in the world. I'll swim in warm ocean water, wearing a bikini even though I'm fat. I'll eat food that nourishes my soul, even though I know it's probably clogging my arteries. I will laugh and sing with my cousins who are part of some of the best memories I have of my youth. I will try to learn a new way of being me that isn't waiting to be "better" to have my life again.
no subject
Date: 2018-03-29 07:27 pm (UTC)also, alaska air shared a pic of ireland on their IG yesterday which launched me into a daydream of going to scotland with the nanakuli mcleans to trace our roots and be ridiculous in another country. we should make that happen.
no subject
Date: 2018-04-12 02:21 pm (UTC)Sending virtual hugs.