written on August 29, 2014
Here it is – the migraine is starting at 7:34 am. I’ve been on the machine since 5:20, so just like clock-work, always about 2 hours in. Blood pressure is currently 176/102 – not bad. It was 193/108 when I got here, so it has gone down a little bit.
Today might be a bad day – I don’t know for sure yet. I know mentally it’s shaping up to be a bad day.
On the drive to the center this morning, I started to feel overwhelmed by the health issues. It’s bringing me down to think that every other day is a bad day for me now (the last two days I’ve been taking care of the kids during the day because their daycare is closed this week).
I hate knowing that on days that I dialyze, I really don’t have the energy to keep up with them. My daughter is at the point where she wants to be held a lot and my son keeps getting jealous of the attention I’m giving to his sister so he demands to be held also. But I do not have the strength right now to hold both of them, plus they tend to start hitting each other when they’re that close. And I also can’t hold either of them with my right arm because they have this amazing propensity to always grab hold of the catheter when they’re on my right side. Not a good thing – I definitely don’t want either of them pulling the catheter out, not even a small bit.
I really hate expecting that dialysis days are going to turn out bad. This isn’t what dialysis is supposed to be. It’s not supposed to make my days bad. I’m starting to feel like I’m the only one who’s going through this hell with dialysis. I don’t see anyone else leaving this center in pain, wincing with every footstep because the throbbing in their head is so bad. I don’t see anyone else telling the center to not take any fluid off today, because that’s a migraine trigger. I also haven’t seen anyone else with blood pressure as high as mine.
It really makes me want to ask why. Why is this happening to me? Why do I have to go through this? And most importantly, will it end when I have a transplant?
I know, I know. Asking the big “why” questions is a waste of time. I had a teacher in high school who used to tell us that “life is a bottomless pit of why questions.” That has stuck with me for years, because of the truthfulness of the statement. As human beings, we seem to be constantly asking the big why questions, but there are never answers to them. I think the curiosity of being human forces us to look at life in an inquisitive way, and yet at some point I think we all accept the inevitability of not being able to have answers to the questions we ask. But during times of duress, times like now, when we face our own mortality or the mortality of someone we love, I think the questions creep back in. If you’re a spiritual person, the questions almost always come back to asking God or the Universe or whatever higher power you might believe in why is this happening to me. Of course some religions don’t want you asking those questions of their higher power, because those questions invite you to question your faith.
I want to question my faith, I have to question it. I know I’ll never find answers to the big questions I have, but I have to believe that I will get through this. I have faith that with the love and support of those I care for, I will make it to the other side and be a better person for it.
At the same time, the question of why is always there. Hanging over my head, lingering in the background like some kind of evil temptation. Giving in to the temptation of the question only brings me down more; it sucks the optimism out of my soul and makes me want to stay in bed all day, forgetting about my wife and kids and everything else that’s important to me.
I believe that in a few months, I’ll look back on these dark days and laugh about how I came so close to sliding down into depression. It’s my way – I tend to laugh at the difficult things (one of the reasons my nickname in college was Laughing Boy). I know there are so many people who have it way worse than me – people with even more debilitating diseases, or people who have loved ones going through something worse than renal failure (and trust me, there are a lot of worse things than this). On days like today, when I’m feeling down and my optimism needs a little refill, it’s hard to focus on anything but myself - the feeling that I’m the only one in the world going through this.
Now that’s a feeling I hate having. It’s selfish enough that I’m writing a blog about what I’m going through. I really do help this blog can be of some help or comfort to others that might be going through something similar.
Even though the migraine is slowly getting worse, I am going to try my best to have a good day. To move past how I’m feeling and try to have fun with my kids today. Try to not get frustrated or impatient with them, try to get some energy to be able to play with them. I think I can. I believe I can. I owe it to them to rise above all of this and be the dad they want me to be.