And time goes by, and we are halfway through the second month of 2017. There is much to say about the state of the world, but do not fear, I really don't have the energy to talk about it here. Not my platform.
What I can say, however, is that seasonal affective disorder is real; and has been hitting me pretty hard. With weeks without a single sunbeam to sniff at, the all-consuming grey has a certain way to dampen the soul.
Additionally I just got out of the hospital after spending four days in there for the worst bout of pneumonia that I've had so far. I seem to get it at least once every year, thanks to my GvHD and lung damage, but this one hit me pretty hard. It will be months before I'm back to where I was...which was not great to begin with. So that's hard to take. I'm fatigued and weak and sleepy- but have abs of steel thanks to all the coughing. #blessed
I also dyed my hair (the bits of it that are left: I shaved my head on January 1st) a bright crazy purple yesterday and that is giving me a little lift and life in the 50 Days of Grey. #YOLO (am I now going to end every paragraph with a hashtag? Who can say.)
But in addition to SAD (oh aptly acronym-ed...#CRYING) I'm also realizing that I really owe it to myself and to anyone who might find this blog at any point who can relate so they don't feel alone: let me say it loud and clear: GRAFT VS HOST DISEASE IS THE DEVIL INCARNATE.
Not only have you endured cancer and all that shixxxx that goes along with it; you're stuck with an autoimmune disease that almost nothing is known about and can present in myriad ways from mild/annoying to life-threatening. Just as I am typing this my left hand is starting to spasm; one of my more painful presentations- which also makes it hard to do things...with your muscles. Which is pretty much...everything.
---break to calm hand spasms---
I've also been trying to gain weight to hopefully help with a couple of things:
1) being malnourished is just not good for you. My hair is thinning, and it probably contributes to my muscle spasms.
2) I want to be strong. I need to gain weight but I want to gain muscle and get my flexibility back. But this appears to be a very very V E R Y slow battle where there are more losses than wins.
Just these past two weeks with pneumonia, I lost 6-7 pounds; which, when you weight like 100lbs to start is not good at all. It is hard for me to go up even a short set of stairs. I get winded from my crapass lungs and my leg muscles (if you can call them that. I like to pretend like they are built-in crappy leg warmers) are tired and shaky.
Chronic GvHD is a real thing. Even if no one really knows anything about it. It's real. And it's real hard. It's often invisible; people tell me I'm looking great, etc. because I'm so skinny etc. I know they mean well, but can I just say on the record: let's stop talking about people's weight?!?!?!! I don't need to be told I'm skinny and it doesn't make sense to me that somehow that is culturally appropriate to talk about but the opposite would be incredibly offensive. So let's just stop talking about it. Let's make room for people to love themselves without an "affirmation" from you about their body. #rant.
I struggle every single day with cGvHD. My eyes don't produce tears (something I'm trying to work on, but there's just so many meds...), I have weird skin discoloration/hyper-pigmentation all over my body that makes me look like I'm covered in bruises all the time. Weight loss seems to also be a symptom of cGvHD; for unknown reasons at this time (according to several studies I have read). I know I struggle with appetite and nausea and difficulty swallowing, which probably all play a part to some extent.
HOWEVER there is good news, among the grey days and hospital stays... I've decided to go back to school to pursue an MFA in Directing. I've been looking into several different programs: getting the ball rolling early for fall 2018. It's good to have something to look forward to. #excited
Just trying to remain the superhero of my own story. Which is much much
harder than I could have ever anticipated four years ago. I want to
remain that strong human who beast-ed through cancer and came back with
super powers... but it is getting more and more difficult to stay
positive. So, sometimes you just gotta start outside in and dye your
hair purple.
#kbye
