Out of Control

Well, my life just became a lot fuller. I’ve got two pounds of fluid in my abdomen, 60+ boxes in my living room, and a regular schedule of daily dialysis exchanges, blood pressure measurements, and symptoms checklists to go through. Right now I feel like I’m living in semi-controlled chaos.

Now, anyone who knows me knows that I have a driving need to be in control of my life. My mom tells a hilarious, and true, story of the first time she held me in her arms. She says that I looked up at her like I was the mother and she was the child, and I expected her to obey. Not much has changed since that day. Except that at various intervals throughout my life since my senior year of high school, my life spirals completely out of my control, and I have to deal with it.

Our reorganized bedroom, with my dialysis machine next to the bed.

I finished dialysis training last week (they make me train every time because making sure everything is sterile can be literally vital), and I am finally using my dialysis machine, or cycler, every night now. I’m also on some strong doses of epo and iron to combat my anemia, so I’m feeling better. In addition, we had to rearrange our bedroom to fit in all the boxes containing my dialysis supplies, and, surprisingly, we actually love the way everything looks now!

My dialysis machine. Forgive our geekiness, but we call him R2PD. I mean, if you’re going to have a droid in your house, you must name him after Star Wars, right? (Sorry as well for the blurriness: shaky hands.)

All of that is on the plus side. In the negative column are some other aspects of life with dialysis. I have to eat so much meat, every day, for every meal. Before all you carnivores out there pooh-pooh my wee little burden, let me tell you, I have seen big, masculine, steak-and-potatoes men on dialysis complain about how much meat they have to eat to keep their protein levels up. It’s a lot, and it’s hard for me. (I was a vegetarian for seven years before my first stint on dialysis.) I’m good at eating protein for most of the week, and then I have a day when I want to beat my latest chicken breast with a blunt instrument and bury it in the backyard. (I’m pretty sure no one would come looking for him.) What saves me in this situation is two-fold: 1.) I love to cook, and finding fantastic, new, meat-laden recipes can be enjoyable. 2.) Sushi. I never get tired of that particular protein. There are also other aspects that are not so fun (my stomach isn’t as flat anymore, and my clothes don’t fit as well; I have to eat Tums before every meal; every activity has to be shoehorned into my dialysis schedule; etc., etc.), but I don’t need to go into all of that now.

Thus, my comment on how very full my life is. It’s not just the physical aspects of my days that have expanded, though; my life also feels full of gratitude and contentment. The last time I wrote I was at a low point: I had been stuck in my bed and in pain for weeks, and I was having a hard time seeing the positive. My post was sufficiently negative, in fact, to warrant an emergency phone call from my mom to check on me. (You can tell it’s an emergency call because she phones Kohl rather than me, in order to make sure she gets the real dirt on how I’m feeling. That woman constantly surprises me with her insights into my character.) Since that post, as I healed and quit feeling sorry for myself, and as my anemia and its resultant weakness were dealt with, I started seeing all the sun-dappled beauty surrounding me again. It is summer in the Avenues of Salt Lake City, and that is a beautiful situation in which to find oneself. I’m well enough to go on walks again, we have wonderful friends with whom we spend time, the farmer’s market is bustling, and everything around me is growing and green.

Moreover, I am slowly exerting control over those things which I can. I can’t control the fact that I have to make time for dialysis, but I can utilize my free time as productively as possible, and you can be sure I am using the time while on my machine for my own projects. My diet has been taken out of my hands, but what I do with my food regimen is creative and healthy, and, after talking with other peritoneal dialysis patients, I’m contemplating coming up with a cookbook of my recipes. We may have had to put adoption on hold again, but I am using this time to make sure our house, affairs, and finances are as perfect as possible, so that we are completely ready to welcome the little person who is supposed to make another link in our family circle as soon as we can. I may not be able to control many, or most, aspects of my life right now, but I will be fine, because I am stronger than my disease. In all honesty, I should probably say: I am stronger because of my disease, and that strength, I suppose, is worth the loss of a little control.

Mental Pacing

I’m getting a little restless. I hate the whole recuperation stage of laying around all the time, painful movement, painkiller-clouded thoughts, and isolation. There is good news: they were able to place the catheter! The surgery did end up being more invasive than they had planned, and they had to make an incision to find where they could put the catheter, so the recuperation is taking a little longer than we had hoped. However, the catheter is in there and the flush they did worked, so right now it looks like peritoneal dialysis will work. Thank you, everyone, for your thoughts and prayers as we went into this surgery. They were felt.

This is right after the surgery. Thus, the glassy eyes.

Now I just have the sluggish process of recovery to navigate. Unfortunately, painkillers give me anxiety and hallucinations, so I generally start weaning myself off of them the day after a surgery. It means a little more pain, but also fewer dreams about threatening people standing over me and whispering. I’m also walking around all the time. It sounds counterintuitive, but the more I get up and move, the better I feel. I can’t do it for long, in fact, I can’t even sit up for long, but I try to walk every chance I get. However, the worst part of recuperation is the restlessness and depression. It’s hard to be in one place for weeks, and my mind starts to rail against the situations that have brought me here. I know it’s not rational, but I get angry and I start pacing like a wild animal in a cage. Except I’m a little weakling right now, so I mentally pace inside of the bone cage of my brain, and that is even worse.

In addition, the entire world, my entire world, is having babies. You are probably thinking that I am exaggerating, but in my neighborhood ¾ of the women my age are pregnant or just had their babies. In fact, of the maybe six friends with whom I’m closest here, four are pregnant, along with my sister-in-law. Two other sisters-in-law just had a baby or just received confirmation of the baby she is adopting. None of this makes me bitter or angry; that’s not how it works. I am thrilled both for my friends and family and for the joy I will get in having so many more little people in my life, but, as I sit in my bed, constantly shifting position to try to ease the discomfort and trying not to feel depressed, a small part of my mind keeps asking,

“When is it my turn?”

Then comes the real terror:

“What if I don’t get a turn?”

We were working through the steps to adopt when I was told my kidney was failing. Having to stop that process to focus on my own health was the worst part by far of getting sick again. Not being able to have a family is the most tender, the most raw pain I have ever felt, and as I struggle to rise above the physical and emotional lows I’ve hit at the moment, it is uppermost on my mind. I don’t talk about my infertility much, and I’m not putting it up here because I want sympathy or even advice, because it is far too aching a wound to tolerate much of that, but I want this blog to be honest and real, and I feel completely caught up in the pain of this aspect of my shadows right now. This blog can’t always be about overcoming adversity, it’s also about living through it, and I guess I’m just not through this part of it yet.

I’m sorry to lay all of this on you; I try to be positive most of the time. Maybe once I actually start dialysis I will start feeling stronger and better able to deal with my burdens.

Right now, I just keep pacing.

“You Can’t Always Get What You Want”

But if you try, sometimes…

To those who have sent me messages or been worried about me because I haven’t posted for a while, I’m sorry. I was working on Kohl’s film, which he shot this month (http://www.facebook.com/OrcWars), and it devoured our lives for weeks. I actually did much better on the shoot than I thought I would; it just shows that when something needs to get done, we can find a way to do it, in spite of health or energy. I ended up being fully capable of running around and working all day. Well, maybe not fully capable, but for the most part, I got the job done. Once I get some of the pictures from the shoot, I’ll write a post about it, but today I have other things I’m thinking about.

I met with my surgeon, and a lot of my fears about being able to do peritoneal dialysis have come rushing back. He had some concerns about not only placing the catheter, but also about whether it would work after so many surgeries and so much scar tissue. There’s no real way to tell until they try to place it, so the surgery is going ahead on June 12, but in my mind it has gone from being a fairly routine procedure to one that will decide the course of my health for the foreseeable future. I’m not sure I’m up to being on hemodialysis full time. The last time I did it, my body told me it hated me every other day and my eyes quit working. I wasn’t well enough to do more than move from one supine position to another, and the only things that even tasted good to me were the fumes from the saline solution they would put in my shoulder catheter. It wasn’t much of a life.

These renewed fears have fed into my recent behavior, which hasn’t made Kohl too happy. The way I deal with hurtful things is to shut down and just think them through. The bigger the problem, the quieter I get and the longer I stay silent. The end of Kohl’s film was a signal to me that it was time for me to let go of this magical health hiatus I’ve been living and actually commit to the dialysis process. Every part of my thinking soul is rebelling against the simple fact that it is time. My mind is scrambling like a rodent in a plastic bucket, trying desperately to find a way out, but my body is telling me, with the solidity of stone, that it’s over, and I’m here. I’m at the point where I have to reconcile what is with the ghost of what I wanted to be, and it’s taking me a long time to let go.

I want to be able to walk up my stairs without taking a ten minute rest afterwards. I want to be able to go to sleep at night without making sure my room is sterile so that I can hook up to a machine. I want to smell like the blend of Dove soap, Vaseline Intensive Care Lotion, and Burt’s Bees with my skin instead of chemicals. I want to go outside in the middle of a summer day without shivering. I want to eat French fries without worrying about which strength of dialysis solution I should use to remove the water they’ll make me retain. I want the energy to help Kohl with his projects. I want to be able to keep my house clean and organized. I want a baby. Good heavens, how I want a baby. I want my life, the one I have worked for years to build, the one that I keep having to give up while I wait for my body to be up to the challenge.

Right now, though, what I need is to accept what is happening. I need to let Kohl into my thoughts and allow him to support me. I need to focus on living with grace and strength, despite the very real anger and sorrow that I often feel. I need to refocus on the many others around me who can use my help. It’s too easy to become self-centered when going through difficulties. The fight for survival encourages selfishness, but I want to be the kind of person who thinks of herself last, and I have so far to go. I need to take every opportunity to make myself more loving, more in tune with others’ needs, more aware of how to be better. In that way, I think what I probably need most is this kidney disease. (I know you can’t hear my sigh of resignation through the computer, but it came right after that last sentence.)

I also need help. As I go into this surgery, would you keep me in your thoughts and prayers? I want so badly to be able to do peritoneal dialysis, so, if you would, could you bend your energies in that direction when you get a chance? I’ll let you know how it turns out.