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.
SHADOWLACE 
We just got a sushezi. Derek and Rachel had one and they are pretty awesome. You can make maki super fast and easy. I think it was under 20 bucks on amazon. It would allow you to eat a lot more sushi….just sayin…
I’m interested, but I’m not as excited about making mostly crab rolls, and yet, I don’t know enough to use fish. There is a place up here that sells sushi-grade fish, and I’m always tempted, but then I chicken out. You and I should take a sushi class! That would be amazingly fun, and then we could have a family party to show off our skills. I bet Dad would take the class with us too…
Hi Chris. This is Elizabeth Shaw from your old Lehi ward. Your mom was one of my good friends. We moved to Prescott Valley in 2006. So sadly, I have not kept up on everyone and everything. So I was delighted when my son Josh(Rogers) told me about your blog. He had asked me if I had heard that your kidneys were failing again. That just broke my heart and I want you to know I absolutely pray for you and your husband…and your mom of course. My kidneys are still on the fence. Now on disability. Your blog is a real inspiration to me. I also have my piles of knitting and crochet in a couple of places! Keep writing! Love ya!
job at the hospital to help with opening a new step down unit. So I was pretty excited andrew flattered. But I really wasn’t feeling well at all. So…went to dr.
I remember you well! I’m glad you’re not on dialysis yet, but I am so sorry to hear that you are still in the process of kidney failure. It is such a surreal feeling, and a constant perception readjustment. You have always been an example to me of dealing with this particular trial with grace, and I am so glad you commented. My mom will be too; we talk about you often.
I hope things get better for you; we’ll definitely be sending prayers your way!
I love that story about the day you were born. I believe it completely. 🙂 I am glad you are seeing the tender mercies and joys that life always has. I know those prayers are answered. There was once a time I wouldn’t dare go a day without praying for my ability to see that joy and recognize it. It sure makes a difference. I should probably keep that in my prayers just for general happiness and thankfulness. Thank you for that reminder today. Wish you were closer. Love you.
Finding the delight in life (or the tender mercies) is necessary. I can’t live my life looking at everything through a gray lens; things would feel impossible. Besides, there is so much joy everywhere, and if I have the choice between laughing and crying, I will always choose to laugh.
Thanks to you, by the way, for helping me laugh for so many years. It’s nice to know that I have friends of decades-long standing who are always in my corner.
I love reading your posts. You have such a beautiful view of life. Thank you for being willing to share your ups and downs. I am so grateful to hear that you are feeling better and getting into a routine. Love ya!!
Thanks for the comment, although I have to admit that I felt pretty guilty subjecting you all to my “downs” last post. I don’t like letting all of that negativity out there, but I don’t want everyone to think I never struggle with darkness either.
Routines honestly help me so much. It’s such a small thing, but being able to say, “I choose when this happens,” makes me feel so much more powerful in a situation that often makes me feel very small.
Your blog helps me too. I love the idea of focusing solely on gratitude, and it is soothing to read a blog devoted to it. Thanks.
I echo the above, I love your blog posts. Please keep writing. It seems like if it’s not one thing it would probably be another to keep us on our toes and remember Heavenly Father. I love you Girl!! Glad you can do the things that bring you joy!
Amen, to everything you just said. Especially to me getting back into the activities that bring me joy. Next post I think I will devote entirely to crochet, now that I’m not consumed by surgeries and doctor visits.
As for trials, I agree with you there too. We will always have something with which we have to deal. I think I’ll keep this one. I’ve sort of figured it out, and I don’t know how well I would do with another.
I understand full well what you are going through. Up until a year ago I was working 12-16 hour days as an oil field chemical delivery specialist and hardly ever at home to help my wife with our 2 teenage Highschool children. I felt very tired and faint one day, I had never felt that way before in my life so I went to see a doctor and after some blood work and a couple of hours later the doctor came to my room and BOOM! He dropped the bomb on me. He said my GFR was at 15 and for me to prepare for dialysis and put me on a kidney transplant list! Mr. Superman wasn’t so tough anymore. Well long story short, now my kids see me more than they want to and my wife and I get to spend quality time together. We have been married 17 years and she is my angel. I’ve always been the tough type A personality type but talk about the big slice of humble pie that’s been fed to me. I’ve been on peritoneal dialysis now for 6 months and I went from 180# to 211#, from 34 waist jeans to 38! But I’m alive and praying for a kidney. I just take the good with the bad and roll with it. Yes mam I can surly relate to you. God bless and take care. Adios! From Texas!
Yes, all that sugar water in the dialysate definitely causes weight gain, not to mention the inability to be as active as we were. It’s frustrating, but, as you said, it’s important to be grateful that we are able to survive until we get transplants. I’m amazed when I think that just 60 years ago I would have certainly died with my diagnosis. I am grateful for the humility, though not so much for the way I’m learning it.
Good luck with your dialysis, and especially with your transplant! I hope it comes soon for you!
Finally!!! Someone who understands what it means to be completely exhausted with eating meat some days! :o) Since my sudden and inexplicable kidney failure in March of this year, being on hemodialysis and peritoneal dialysis has changed my taste buds tremendously. Chicken tastes foul (excuse the pun) and fish and berries taste metallic. There are days I just want to dig a hole in my backyard and bury all the pork and beef. ( and hopefully stop muttering If I eat one more piece of…)…thank you so much for sharing!!! Makes me feel quite not so alone!
It is weird how your tastes actually change, isn’t it? Things that normally I love I can’t stand anymore, and things I used to have a hard time with actually taste good. I’ve learned to listen to my body, and if something sounds good to me, I try to make it or get it that week sometime, because if I have to eat a ton of meat, I might as well enjoy it as much as I am able. I’ve also found that if there is a seasoning I like (for instance, hot sauce, basil, lemon), it goes a long way to masking all that meat. The first few months are all about experimenting and trying to find things that work for you. I’ve actually considered doing some sort of dialysis cookbook, because I’m always experimenting with foods I hope will help me enjoy the diet. Hopefully you can find some recipes you like too. In any case, best wishes to you and your continued, and hopefully improved, health.