Hello dear reader(s)!
Yesterday evening, after a cold and crappy day, Hannah and I decided not to go to the store and just to get pizza instead. Yes, this completely goes against a my frugal living idea, but it was too cold, we weren’t feeling great, it was too cold, and we weren’t feeling great. It was also too cold, and we weren’t feeling great. We likely weren’t feeling great because it was too cold.
At least the pizza generated 3 meals (last night’s dinner, today’s breakfast, and today’s lunch) thereby making it almost worth it. Yes, I’m having pizza for 3 meals in a row. Not the healthiest, but sometimes you need to treat yourself. And treating ourselves last night meant pizza from Blind Onion, dipping the crust in honey, as Josh intended.
So we were doing good, all carb loaded, when we started reminiscing on days of yore and naturally, we started to talk about some of the great doctors and nurses that helped me to survive. Which I thought I could handle. But that brought up some of the darkest days, and then some of the issues that I’m still struggling with. And I lost it.
I have been hiding a lot of feelings recently in order to try to keep myself going. Feelings like I did not actually make it through, but only a shell of me has. The problems that still remain and don’t seem to be going anywhere, and the things that I know will only get worse or at least remain that are preventing me from living the life I want to live; they all came down on me at one time. Right now, I’m limited to being around a very small amount of people. I have kidney issues that are affecting everything from nutrient absorption to hormone levels. I am also watching some levels of my kidneys to make sure they aren’t getting worse. Because of that, I have started a new medication to keep one of the levels down, but it can also make other kidney issues worse. Because I have lower back issues (a messed up disc) every time I feel a twinge of back pain, I am convinced that my kidneys are failing and I will need to start dialysis soon.
I can’t play the drums like I used to. I can play better beats, and write better, and my chops are pretty good, but my endurance still isn’t anywhere close to where I would like it to be. Even if I can build my endurance back to acceptable levels, I can’t play shows anyway, because I can’t be around many people. I was strong once, and now I can be strong for a minute or two, but then I am weak. I honestly feel like so much less, physically. And because of those physical issues, I am less confident, less content, and honestly struggling. I’ve tried burying all of this at least until the damn psychiatrist I have been referred to calls me to set up an appointment, but I have been waiting weeks with no response.
The mental health care in this town is virtually non-existent. Because of my insurance, I need the referral, I can’t just go and call around to someone else who will actually decide to let me go see them. I should be able to remember what happened to me without being able to function for a few hours. I should be able to hear the stories of blood cancer (or virtually any type of cancer) patients without having crippling flashbacks. I’ve been trying to hold it together and be there for my wife and her anxiety and PTSD but I’m not being successful. I have insurance and I want help and can’t get it.
Now think of all of the people who don’t. Or those who are getting the “suck it up and deal with it” stigma from people who have no idea what they are going through. I don’t care about that stigma, I am seeking help, and they won’t fucking give it to me.
I want to get better. My body might not ever, but my brain has a chance. How bad is this stupid system that I can’t get the help I need to get better? I’m hoping my marrow will continue to build (but who knows), that my kidneys will at least hold (but who knows), that my B-cells will come back so that I can physically go back to work because I am tired of struggling. But even if that should happen, I wouldn’t be able to without intense psychological help (or an employment contract that forbids the use of the word “cancer” in the workplace and some drug that prevents the random flashbacks from popping up while I’m trying to do a job). Since the latter won’t happen, I’m counting on the psychological help but can’t get it.
There are days I wonder if the transplant was worth it. If all the fighting was worth it, to be alive but living this way. Last night, that was what hit me hard.
And I think of my Hannah, who wanted children, but won’t have them with me unless somehow we get wealthy enough to adopt, who was young and happy and full of life and still is most days, who met this version of me that was strong, healthy, virile and confident. We would go out all the time and see shows and do so much. And now I can’t. Yet here she is, choosing me even still, even after I am not the person I was. I know we have both changed, but she has been there for me in every possible way. And we ended up having a pretty good night after my mini-breakdown because of her being there.
So as long as she’s here, I guess I can hold out a little longer for that damn help that I need.