Baby, It’s Cold Inside

For the last year I have been grappling with some unwelcome truths. I’ve been silent on this blog in large part because every time I start to write, every time I enter the cutting whirlwind that my mind has become, my spirit shrinks away from the exhausting task of explaining all my sorrows. I read a description once that said that despair was a cold desert devoid of life, and it’s true; sadness is a hollow pain, anger is a stinging fire, but despair is an aching emptiness. When I think too much or too long about my current situation, I feel like I am endlessly cycling through those three emotions, though I seem to spend most of the cycle in that cold desert.

Not that my life is without happiness. Even without the little delights like the impossibly blue autumn sky, the wind soughing through brittle yellow leaves, and the so very comforting feeling of cold feet slowly getting warm under an afghan that brighten my days, there is that little sun, that precious joybug, my Little Bird, who fills every corner of me with happy light. No matter how hard dialysis was, no matter how ragged I feel, physically or emotionally, knowing that I am coming home to her calms and lifts me. Being a family with her and Kohl is the most important thing in my life.

That highlights one of my pains, though. I feel as though I am being robbed of my time with her. Three days a week I go to a dialysis clinic, get hooked up to a machine through a catheter attached to my jugular vein, and sit in a chair while a machine cleans my blood for four hours. I leave a little before six, before she is awake, and I get home around 10:30, so it’s not as though I am missing huge chunks of her life, and an unexpected benefit of my absence is that she and Kohl have some fantastic daddy-daughter time on a regular basis. Still, after twelve years of longing for her, every moment feels precious, and I resent missing out.

That’s my sadness.

The anger comes because it seems unfair that my previous surgeries have directly contributed to my high level of antibodies, which is the reason neither of my brothers who have been tested are able to give me a kidney. I am frustrated that it took so long for my medical team to get my hemoglobin levels under control, which led to four blood transfusions, another cause of my antibody level. I am tired of being pressured to get a fistula, a permanent joining of an artery with a vein in my arm. And every time I’m too sick to go to a long awaited outing, or I miss out on an important occasion because I have to go to dialysis or have a procedure done, I feel bitter that one more thing is being taken away from me.

The despair hits me when, after again running through the former two topics, I remember that because of my antibodies I could be spending years in this same situation. The helplessness I feel is both infuriating and debilitating.

The real emptiness creeps in because I don’t know how to talk to anyone about my pain and my loneliness. A terminal illness, like so many other kinds of tragedy, singles you out in ways that are almost unknowable to others. I remember once being asked by a family friend what it felt like as my kidneys were failing. I tried to explain by describing how I could feel my body dying by degrees, that every day I was closer to death.

“Well, that’s true for everyone,” she said dismissively.

I don’t know if she felt that I was aggrandizing myself and needed to be taken down a peg, or if she was just uncomfortable with how open I was being, but it was one of the first times I realized that very few people want to know how I am feeling when they ask how I am feeling.

In addition, I already feel like I talk about my kidney disease all the time, though not in great depth. You know those people whose lives are so consumed by one thing that all conversational roads lead to their own particular Rome? Sometimes I feel that I have two discussion settings: my daughter and my disease, and, believe me, stories about my little girl are a lot more entertaining.

I’m not sure how to break the cycle. Join a support group? Break down in front of one of my closest friends and hope they aren’t made horribly uncomfortable by a situation they can’t do anything about? Spend all of my time reading escapist literature to avoid my pain?

I don’t know the answer. Right now I’m fighting my way through each day, trying not to let my imagination speculate on how many more days of struggle might be ahead of me, and writing this post because, unfortunately for all of you, this blog is about kidney disease and not my daughter.

You guys really signed up for the wrong conversational default.

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The Bitter and The Sweet

It’s been a long time.

I have tried to start this post so many times, but how can a handful of paragraphs accurately depict the miracles and upheavals, the pure, deep joy and the heart faltering terror, that became an everyday part of our lives so suddenly? They can’t, and so I’m going to have to just try to give you a patchy description of the last few months.

In February, after twelve years of (sometimes agonizing) waiting, Kohl and I were able to start the process to adopt a baby girl. It was a miracle, pure and simple. I’ve always believed in miracles, but I don’t really expect them to happen to me. I tend to view them more as faith affirming stories  to help bolster my strength. This time, in the middle of one of the most desperate times of my life, emotionally speaking, the miracle happened to me. With me on dialysis and no discernible way to move forward with our adoption wishes, we were contacted by a birth mother who knows my sister-in-law. I talked to her over the phone, and by the end of the conversation, she told me she wanted to place the baby with us.

I have seldom spoken with someone whom I admired as much as I admire this woman. Her entire desire was for the happiness and welfare of the little soul she was bringing into the world. She knew exactly how hard it was going to be for her, but she was adamant about doing what she felt was right, and she has blessed so many lives through her actions. I truly love her, and my daughter will grow up hearing the story of how her angel brought her to our family.

Two weeks after that first conversation, Kohl and I were flying down to Arizona to pick up our little girl. (Kohl likes to call her Two Weeks’ Notice.) I have never felt so exalted or so terrified. I vacillated between holding her soft head to my cheek while my heart overflowed with the only perfect happiness I have ever known, and a paralyzing panic when I stopped to think about the awesome and awful consequence of being responsible for another being’s life. I had a lot of conversations with my mom and my sister, and thankfully they had felt the same way and reassured me that I would get to a point at which caring for this precious little bundle of bliss would feel doable. They were right.

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Our dark-eyed Little Bird is the delight of our lives. Kohl is especially enamored, and I often have to chase him away so that he gets his projects done. He gets more time with her than many dads do, though, because he takes care of her while I’m at dialysis. Three times a week he gets four hours of pure daddy-daughter time, and sometimes more when I come home feeling especially weak. For the most part though, caring for our girl is easier than we thought it would be. She is a happy, sweet natured baby, and I can spend time with her lying next to her on the bed just as well as if I were jumping around with her.

However, I long for the day when I don’t have to leave her for hours at a time and come back weak and tired. I dream about getting a transplant and doing all the things with her that I am unable to do now, like swimming, long bike rides, milkshakes and fries, and, most of all, knowing that I will be there whenever she needs me.

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Unfortunately, there is some doubt about whether I can get a transplant at all. With all the transfusions I’ve had to have, my antibodies are very high. I only have a chance of matching about 2% of the population. My brother is being tested, and he has a better chance than pretty much anyone of being a match, but there is also the possibility that he won’t be compatible and that, and this is my nightmare, I will have to spend the rest of my life on hemodialysis. There are not many things that frighten me, but the thought of never being able to escape the prison that dialysis makes my body skewers my heart with icy horror. I’m honestly not sure I could do it.

This is the point, then, at which I currently find myself; balanced between the hope and light that my daughter has brought to my life and the dark, lonely despair of sickness without relief. Please, if you feel so inclined, send your thoughts or prayers my way. I know that they help.

And maybe, if it’s my path, I’ll receive another miracle.

Burning

Every night my body burns with fevers, and every night I slowly bring my temperature down while trying to find a comfortable position. Every day I struggle to find the energy to make myself eat, trying to replace my overly depleted resources. Every other day I go in to a dialysis center and the nurses pull my blood out, a cup at a time, in order to clean it. My body knows it is unnatural, and it’s always slightly traumatized and weakened when the three to four hour treatment is over. I shuffle to my car, counting my steps so that I have something to focus on, and I go home and sleep for a few hours, trying so desperately to give my body some of the strength that it has been lacking so long. Every day passes as though I were in a dream; nothing matters but getting through that day, mere survival.

I’m sorry that I haven’t written. My peritoneal dialysis wasn’t working: the abdomen just had too much scar tissue, and my body was so full of toxins that my heart started having problems. They put me in the hospital and told me I would never do peritoneal again. That same day they took out the peritoneal catheter and put a hemodialysis catheter in my jugular vein. It’s been working on my toxins, but my body doesn’t tolerate it very well. It’s my nightmare, actually. I feel barely alive.

Hooked up to the hemodialysis machine

In part, that is because I don’t feel like myself. I’m slow, physically and mentally, and I’m so tired. I am very blessed with people who love me and want to help me, but they cannot comprehend, they are not required or expected to understand, the utter loneliness of a dying body. Every twinge and pain of my body reverberates loudly throughout me, while those outside, those with glowing health and vitality, sound muffled to me. They speak too loudly and move too quickly. Some of them are frightened of me, of the pain they can see in my face. Some of them treat me like a child, trying to fix my life for me. I think most of them are uncomfortable around me; they don’t really understand why I’ve changed and how they should react to that change. All I want to do is find someplace to rest.

The thing is, the thing that you can be dead sure about, is that I am strong. I am strong enough, and even a little bit stronger, to get through this. It isn’t always pretty; I don’t always look happy, I can’t always summon up enough energy to make everyone feel like I’m just the same as always, but I am unvanquished. My will burns stronger than my fevers, and though right now I am trapped in this crumpling, gasping form, when this physical gauntlet is run, I will shine incandescent.

The upper piece of gauze is where the catheter goes into my jugular. The lower piece is where the catheter emerges from the skin.

My brother wants to give me a kidney, so they should start testing him soon. It will probably take a couple of months. In the meantime, I will burn, and sleep, and count my steps, because sometimes life is just gritting your teeth and making it from one place you can sit down to another. And I am strong enough for that.

Looking Forward

I apologize for waiting so long to post; our lives became super hectic this last month, with visiting family members, lots of doctor appointments, and various commitments we had to fulfill. In addition, I was in charge of writing the program that the children in our church put on to show their parents what they have learned, and Kohl directed a short film (in the middle of editing his feature!). I was asked to be an extra (I’m almost entirely sure I was asked just because I have long hair), so I was on set. Now, however, things have started calming down a bit, and I can get back to my routine.

The short took place in 1830’s France, so even the extras got fancy costumes.

The air is just starting to change here. The days are still warm, but the breeze has just a touch of a chill in it, and the leaves are starting to turn. Every time one of those cool breezes hits my face, my heart leaps a little in my chest. Autumn is a time of change and possibility, and I can’t help but be happy as I look forward.

One of the best things coming up on my horizon is that Kohl will finally be done editing his feature film. He has been working so hard every day. He leaves in the morning, comes back for dinner, and then returns to the production office to keep editing. This has been his schedule for the last three months. I love how, as a filmmaker, he can work from home so much and how flexible his schedule can be, but, on the flip side, when he has a project deadline coming up he has to work regardless of whether it’s a Saturday, holiday, or special occasion. When he’s done (hopefully today or tomorrow), we’re going to take a day and just spend some time together.

In addition, my dialysis has been working really well. I’m not retaining fluid, and I feel a lot more energetic now that they’re being aggressive with my anemia. The only things I’m really struggling with is how out of control my emotions are and how slowly my brain works. I know that it’s only temporary, though, and it does make Kohl laugh to see me crying at commercials.

This is also the season when I start making all my Christmas presents. Last year I realized that I just don’t have enough time to make something for everyone, so I trade off making things for Kohl’s family and my family. I am so excited for the things I have planned. As I finish them, I’ll post them so you can see what I’ve been doing. In the meantime, here are some other projects I’ve been finishing up.

Socks I made for a newborn in our ward. Kohl wanted me to make them Rainbow Dash colors.

A tunic and furry boots I made for one of my friends who is about to have a baby girl. I gave her some pink leggings to go with it too.

A sweater vest for one of my friend’s twin babies. The sizing was tricky because the twins were premature, so they were a little smaller than normal, but I needed to size it for how big they would be in the winter. I’m still not sure if I got it right.

The other twin’s sweater. Her mom is a style maven, so I included different ribbons so she could mix up her look.

Hats for the down syndrome walk. I’m making some in men’s, women’s, girl’s, and boy’s sizes. These are the womens’ hats.

A closer look

The boys’ hats for the down syndrome walk.

The girls’ hats for the down syndrome walk.

I love this detail from the girls’ hats. It goes on the side and can look like a bow or a butterfly.

Of course, I have already been crocheting like a mad woman. Not only do I have literally a dozen friends and relatives having babies (and how can I resist making some adorable crocheted items for all those little joybugs?), but I also found out that one of my best friends is having a Walk for Down Syndrome in honor of her daughter Teila, and they are including a Craft and Bake Sale. I volunteered to send some crocheted hats, and I have absolutely loved working on them, for a couple of reasons.

Isn’t she a doll? If you are able, this is a wonderful cause, and I’m sure there will be plenty of delicious things to eat and buy. You can find more information here: http://tantrumhairsalon.com/meet-the-reason-for-our-walk-for-down-syndrome

Firstly, it’s nice to make something quick and without worrying about whether the person for whom I am making it will like it. I get to play with the colors and yarns I choose, some of which I’ve had for years just waiting for the right project. Secondly, when dealing with something as life-changing and all encompassing as a chronic disease, there is a real danger of becoming overly selfish. Your mind automatically reverts to survival mode, and nothing seems as important as getting what you feel you need immediately. I’ve watched this start happening to myself every time I start dialysis, but this time I made a goal to focus on other people more than myself, and opportunities to serve like this one help to counteract that selfishness. I still have a long way to go until I’m as generous as I need to be, but I have noticed that as I focus on being there for others the inevitable emotional upheaval and depression that come with dialysis have not affected me as much as they have previously. It makes sense, doesn’t it? You can’t be constantly thinking of how hard things are for you if you’re trying to think about how to make things easier for other people.

Plus, planning out what kindnesses I’m going to perform makes looking forward so much more pleasant.

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.

“Brim with Joy”

In a little under a week I’m going in for surgery, so for these last few days Kohl and I made a list of everything we wanted or needed to get done, and we’ve been working on checking them all off. Unfortunately I sleep for half of every day and Kohl is constantly busy with all the various film projects with which he’s involved, but we’re still trying.

Some of the things we have on the list are getting our house totally clean, taking family pictures, putting my herb garden in order, and going swimming (I love swimming, but I’m not allowed to go once I get my catheter placed, so it’s my last chance for a while). We’re doing pretty well on the list, almost entirely because of the efforts of Kohl and others. Yesterday, I was feeling pretty terrible, and while I slept Kohl picked up, straightened, washed and vacuumed every room in our house. I feel a lot of guilt when he does that, because I know that most of the clutter is mine. Kohl despairs over what he calls my “piles” and it’s true: by each of my habitual resting places, like my chair in the living room or my side of the bed, I keep a stash of the books I’m reading, the projects on which I’m working, or the mail I need to go through. Poor boy, he hates clutter. Thus, my guilt when he has to deal with mine. He worked so hard, too, not to berate me for it. I love that man; he is so committed to being the best version of himself, and he succeeds so well. I’ve never met anyone so talented at setting personal goals and achieving them, even when his wife is too ill to do her share.

We also had a wonderful experience with family pictures. I’ve been trying for a few months to set up some sort of photo shoot with one of our many cinematographer friends, but the thing about those guys is that they’re always busy shooting commercials or movies. Trying to fit my sporadic bouts of health with that type of schedule just never worked out. I had given up on the idea, and I was thoroughly disappointed. We haven’t gotten actual family pictures, just Kohl and me, since we were married 11 years ago, and taking them while I am on dialysis is not really an option. Dialysis changes the way I look drastically. It’s as though my entire body knows that something unnatural is going on, and the actual muscles shift in revolt. That’s not it, of course; I’m sure that it is just a combination of the extra fluid in my body and the lack of energy and nutrients that make me lose color (you didn’t think it was possible for me to have any less color, did you?) and seem to change the shape of my body and face. Regardless, I thought getting pictures was something else I was going to have to set aside until I got well again.

Then, last week, a photographer friend, whom we had really only met once in person before, contacted me and offered us a photo session out of the blue. She had read this blog and felt the urge to do something nice for us. I explained that we would have to do the shoot in the next few days, since my surgery was so close, and she immediately scheduled a time for us. We spent a couple of hours shooting all around my beautiful neighborhood, and every picture I saw was stunning. (I strongly suggest you check out Briana Marie Photos on Facebook and online; she has some wonderful work.) I’m so excited to see the rest of them, and I am a little overwhelmed by the generosity of this sweet woman.

This is one of my favorite pics that Briana took.

In fact, I feel blessed to have so many people love and care for us. I have a good friend who called me up a couple of months ago and told me that she was going to be bringing us dinner every Wednesday, so I should just start planning on it. (Kohl got a huge kick out of that. “Finally; someone who knows how to talk to you,” he said. He thinks I am sometimes too focused on being independent.) I have other friends who will randomly call me up and tell me they made extra food, can they bring it by; or they’re on their way to the store, is there something I need; or they have some free time, would I like to get together and crochet? Some of my friends even set up a party so that I can go swimming the day before my surgery! I have family members, good friends, and people I barely know all sincerely offering to be a donor for me, and I have a couple very special people who have told me they are willing to be a surrogate so that Kohl and I can have the baby we’ve been wanting so long.

I am overwhelmingly blessed in and by the people I know, and I am constantly astounded at the amount of love that we have received from so many. As I’m trying to get my life in order this last week, I am feeling remarkably calm and happy. All I find myself thinking about is how lucky and grateful I am for my beautiful life. Have you heard that phrase “brim with joy”? That is how my heart feels right now. I have been so well taken care of, and I know that, regardless of the outcome of this surgery, that will continue to be the case. To all those who have shown me such unconditional love, thank you. To those who have served me, or prayed for me, or sent some of your thoughts my way, I am so grateful to know people like you.