“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.

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My Mantra

I received a call from my doctor today, and she told me that my anemia is doing a lot better (I have been pounding iron), but my kidney function has dropped to 6%. It wasn’t really a surprise; I’ve been so weak the last few weeks that I can barely get myself dressed in the morning. She suggested that the time has come to finally start the dialysis process. Unfortunately, the timing is bad. Kohl starts filming a movie May 1. Happily, they aren’t staying on location, so he’ll be coming home every night. With my doctor’s consent, our current plan is for me to start dialysis when shooting is done. (Although we might plan a small vacation right afterwards as a last hurrah.) After a year and a half of holding it off, I’m starting dialysis for the third time.

I’m not really sure how I feel about this news. I don’t want to start dialysis; I dread it. My mind keeps scrambling to find a way out of it, but the only way forward is to move through it. On the other hand, I can feel my body slowly giving out, like a ship drifting through the cold emptiness of space, in which all the life support systems are shutting down one by one. It’s a very surreal feeling. I can feel the tethers holding me to my body, to my life, getting more tenuous. Sometimes it seems like it would be so easy to let go and just float away, but I was born a stubborn fighter. (Seriously, ask my mom; she has a lot of stories.) Sometimes all I need is to remind myself that there are lessons I need to learn to become the person I’m trying to be; sometimes I feel lost in the loneliness of being the only soldier able to fight this particular battle with my own body while everyone else seems to be at peace with theirs.

I have a couple of mantras that I repeat to myself all the time. They remind me of who I am and who I want to be. The first is, “My will is stronger than my pain.” This is true, although sometimes I have to remind myself of that. Stubbornness can be a fault when applied to the wrong situations, and I have worked on that for years, but when I am dealing with my disease, there is a huge amount of power in being stubborn. I refuse to let my disease conquer any part of my life. It is something that I have to deal with every day for the rest of my life, but it bows to my will and not the other way around. There are obviously concessions I have to make, but I will not be defined by a disease.

The second mantra is, “Happiness is a choice and strength is a habit.” I know that it isn’t always possible to just say, “I choose to be happy,” and have my sadness disappear, but I have also realized that I have the choice to view my life through a positive or negative lens. Every day contains delight; I just need the eyes to see it. Strength is the same way: the more that I get up every day and accomplish something, regardless of my physical state, or refuse to allow self-pity to bog me down, the easier it is to continue doing so.

I do dread dialysis. I hate how foreign it makes my body feel. I fear the constant threat of infection. I am irritated by the complications it adds to my schedule and the infringement on my social life. I get tired of all the supplies I have to store and the constant regulation, and I am terrified of those nights that inevitably come when all the world sleeps while I am alone with my suffering. I know, though, that it is time. In all honesty, it was probably time a few months ago. I am so weak that even the simplest of tasks are difficult, and I have been having a hard time breathing. In some ways, it will be a relief to just get started; at least the waiting will be over. In regards to my fears, well…

My will is stronger than my pain.

“Wild Nights are My Glory”

I walked home tonight from the church around the corner, and I was blown away by the beauty of the evening. The sky was a jumbled pile of different shades of gray and all the bare-branched trees were bending creakily first one way and then the other in the wind. The old Victorian houses in my neighborhood were the only solid things, and all I could hear was the roar of the wind and the skittering of dry leaves across the ground. There is something magnificent in a stormy night like this, and I was happy both to be walking in the midst of it and to have a warm destination waiting for me.

My stormy walk made me think of two things. The first was how much I have missed being outdoors. John Muir, a famous naturalist, said, “Everybody needs beauty as well as bread, places to play in and pray in, where nature may heal and give strength to body and soul.” That is certainly true for me. Since I was a child, I’ve gone outdoors when I’m hurt, angry, sad, pensive, or exultant. Happily, it’s getting warmer outside, so I can start spending more time out there.

The second thing I thought of was an analogy, because that’s how my brain works. (Seriously, ask me to explain an abstract concept to you sometime.) What I’m going through right now, what any of you are going through right now, is a type of stormy night. It’s darker than usual, the wind is whipping things around, making them seem unfamiliar and unsettling, and I’m not always sure I can make it home before I get soaked. You know what, though? Storms come. When we were in Arizona for my father-in-law’s funeral, my niece said something very similar. We were talking about grief, and teasing Madison a little about her frequent crying, and she said, very simply, in explanation, “Tears come.” Well, so do life’s storms. You can’t fight them, but you can ride them out.

I’ve always loved the book A Wrinkle in Time since reading it as a little girl, and in it one of the witches says, after coming into a house through a raging storm, “Wild nights are my glory.” My young, melodramatic heart leaped in agreement when I read that phrase, and I still feel it resonate with me when I walk through powerful winds and heavy, expectant air. I decided tonight that I can make my life-storm a glory also. There is a beauty in those who deal with difficulty with grace and strength, and there is something compelling in people who try to serve others while in the middle of their own struggles. I want to be that type of person. I may never like kidney failure as much as I love stormy nights, but there is a destination waiting for me at the end of this trial, and if I do it right, the person I’ll be when I get there will be a lot closer to the person I want to become.

I’m going to be getting more blood work done this next week, so hopefully my anemia is under control and I will be able to stay off dialysis a little longer. Wish me luck!

Therapy

I know I let you down last week. For the first time since I started this blog, I wasn’t able to stick to my one post a week goal. Ok, that actually sounds arrogant to me. Let’s rephrase it: I let myself down. Believe me, I’m completely aware that this whole blog thing is much more about me dealing with my shadows and letting long unused talents see the light than it is about bringing hope to the hearts of the masses. However, if you did miss me…I’m sorry.

The truth is, the last month has been much rougher for Kohl and me than I had thought it would be. The previous year, as my health slowly faded, I felt like every day was a magical gift, and I was grateful. However, I was also a little arrogant; I kept thinking, I know how to deal with this kidney disease, and though I’m not looking forward to it, I can be stronger than it. Then we were hit by a succession of emotional trials, and sometimes I feel like I’m breaking.

Kohl is still grieving for his dad, and I don’t always know how to comfort him. The other day my heart broke when I heard him sobbing in his office, only to discover that he was actually gasping for breath while he laughed hysterically at a YouTube clip of someone getting hit in the head by a ball. Other times I find him with tears in his eyes as one of his dad’s favorite songs comes up on his iTunes playlist, or worrying that he’s not close enough geographically to help his family.

For me, besides the constant yo-yo of “I feel pretty good today…oh, wait, I’m starting to feel cruddy…no, no, that must have been a fluke; I’m feeling ok…oh, man, I feel terrible,” I’ve also been dealing with the fallout from an emotional conflict with loved ones that has left me struggling with a lot of anger and bitterness, and I’m not sure how to adequately, or healthily, cope. I thought I had learned how to deal with these emotions better than I have, but apparently I still have a long way to go. To top it all off, I got a call last night that my grandpa had had a heart attack (they think), his kidneys have shut down, and he’s in the hospital. Although it sounds like he’s doing better today, there are still a lot of unknowns, and I’m feeling a little out of control.

I’m not sure why all of this is happening at once. Why is it that struggles so often come together? What is it that we need to learn from the combination of grief, fear, emotional distress, and helplessness? If it’s that we sometimes are unable to cope with situations all on our own, that we need help and love, believe me, I am feeling it. I think there is something else, though. I feel like there is some profound truth just beyond my vision that I am supposed to be in the process of learning right now. I hope that I’m discerning enough to grasp it soon, because I do not deal well with emotional pain.

In the meantime, I am trying to be calm and allow myself to feel what I need to feel to work through the anger, fears, and stress. I’m turning again to being creative to help soothe my frazzles. I really love just sitting in silence and working with my hands; I love music, and I like watching things as I work normally, but lately the silence has allowed me to really think about where I’m at and what I truly want while my hands are creating structure and beauty out of tangled threads. In fact, the other day I sat down with some yarn I’d been crushing on for months and created my own pattern for a simple cowl. I spent a few hours on it, and afterwards I felt amazing.  My problems weren’t miraculously solved, but I felt more able to deal with them. Plus, I can never have too many warm things to wear up here on the mountain; this place is cold.

Below is the pattern I created as therapy this weekend, for those who are interested. Please don’t sell the pattern or the finished piece without my permission. (Not that I think any of you would, but apparently this is important to put up for legal reasons.) Here’s hoping that it might help someone else with their frazzles too. If you have questions, let me know!

WOODLAND TWEED COWL

Measurements: 7 ½” (19 cm) by 52” (32 cm)

Materials:

Lion Brand Tweed Stripes yarn (100% Acrylic, 3 oz/85g/144 yd/132m) or other bulky (weight category 5) yarn: 2 skeins Woodlands

US K-10.5 (6.5 mm) crochet hook, or size to obtain gauge

Gauge: gauge is not critical for this project

Foundation Row: Ch 132. Being careful not to twist chain, connect circle with a slip stitch in first chain.

Row 1: Ch 2, hdc in same chain. Hdc across.

Row 2: Ch 2, (FPhdc around hdc, BPhdc around hdc) across.

Row 3: Rep Row 2.

Row 4: Ch 1, sc across.

Row 5: Rep Row 4

Row 6: Ch 3, *sk next sc, 1 dc in each of next 3dc, 1 dc in skipped sc, repeat from *. Join to top of turning ch with sl st.

Row 7: Ch 1, turn. Sc across.

Row 8: Ch 2, hdc across.

Row 9: Ch 1, turn. Sc across.

Rows 10-13: Rep Rows 6-9.¹

Rows 14-15: Rep Rows 6 and 7.

Row 16: Ch. 1, turn. Sc across.

Rows 17-19: Rep Rows 1-3.

¹ The current pattern will give you three repeats of the central pattern; if you want to make the cowl wider, repeat rows 6-9 once or twice more. If you do choose to make it bigger, you may need another skein of yarn.

The Bright Side

The last couple of months have been challenging for me, and I’m afraid that this blog has been a little gloomy in consequence. The truth is, my life is pretty fantastic. I live in an apartment in a beautiful Victorian mansion in a historic part of Salt Lake City with my husband, who happens to be an extremely talented filmmaker capable of making me laugh daily, and my chinchilla. I’m fairly weird, and yet I’ve been able to make good friends who can either look past the oddness or share some of it. I am surrounded by people who care enough about me to consistently check up on me and want to take care of me, though I’m afraid sometimes my desire for self-sufficiency and stubbornness deny them the opportunity.

Basically, what I’m trying to say is that I’m sorry those of you who read regularly have been subjected to so much doom and gloom lately. I’m actually a very optimistic person, but I think that the stress and sadness of the last few months has been reflected in the emotions I’ve expressed here. In contrast, I want this post to focus on all the bright, sunshiney spots in my life, so I have listed some of them below.

-I have fourteen nieces and nephews whom I love with all my heart. I can’t resist making things for them, and I could talk about them all day. (Although I don’t, or at least I try not to; I’m pretty sure etiquette demands that I refrain from monopolizing the conversation with anecdotes about the precocious and adorable offspring of my siblings and in-laws. If you’re interested, though…we should have a chat.) One of the things that makes me happiest is writing letters to those little joybugs. I started it when I moved out of state and didn’t get to see them as much, and it has been more fun than I ever imagined. They LOVE getting mail.

-Some of my friends and I started a Craft Club. We get together once or twice a month, and everyone brings something they’re working on (or not; sometimes people just want to get in on the conversation), and we talk and craft. It is a huge stress reliever. In fact, the first time we did it, I ended up bawling like a baby as I talked about some of the stuff going on with my disease, and afterwards I felt so much better. Luckily, I’ve never repeated that performance, but it’s so nice to know that I have a place where I can be like that and people will still sit near me the next time they see me. Also, one of these times I’m going to have someone teach me to knit.

-While in Arizona for my father-in-law’s funeral, we were able to see some of our best friends. Just seeing their faces at the viewing and funeral made everything easier. Again, when we came back to Utah, we were able to see many of our best friends here, and it eased my heartache. I have genuine love for these people, and there is not much I wouldn’t do for them. To have them there when I needed them was a blessing I didn’t even realize I needed.

-I find constant delight in creating things. One of the premiere joys in my life is to sit in a beautiful place, preferably outdoors, and work with my hands. I just finished a sweater for one of my nieces, and I have been in love with it for the last 24 hours. I couldn’t stop picking it up and admiring the colors. I hope it doesn’t sound like I’m bragging; I adored the colors when they were just hanks of yarn also. I just mailed it off this morning, and I can’t wait to see a picture of my niece in it. Making and giving gifts provides some of the happiest moments in my life.

A sweater for Autumn

-My husband, Kohl, is my very best friend, and he has been since four years before we were married. He was there the first time my kidneys failed as my friend, and he was with me the second time as my husband and primary caregiver. He is patient, gentle, irreverent, witty, highly intelligent, startlingly creative, and hilarious, and when he doesn’t know anyone is watching, he is an amazing dancer. I don’t know who I would be if I didn’t have him in my life.

-Finally, after all the fear and worry about my doctor’s appointment, it turns out my numbers are still surprisingly good (for someone with only 9% kidney function, at least). My doctor said that I don’t have to start dialysis right away; she’s giving me four more weeks, and then I’ll get more bloodwork done. Considering that my previous kidneys have failed in a matter of weeks after the earlier returns of my disease, the fact that this failure has taken more than a year is miraculous. I am so grateful for this extra year of health that I’ve been given. I feel like my senses are sharpened, and I have been able to notice every delightful thing with grateful eyes. The doctor also told me that I shouldn’t have to go on hemodialysis at all! That was a huge pile of dread that slid right off my shoulders, and I’m feeling a little more able to breathe. The only gray lining to this silver cloud is that I’m badly anemic, to the point that I may have to start getting bi-weekly shots of Epo to strengthen my blood. Unfortunately, these cost $2500 a pop, so to be able to afford them I might have to start dialysis anyway, in order to get on Medicare.

Regardless of the hurdles still ahead, I’m feeling happy and relieved that things turned out so much better than I had hoped. It’s a lesson to me not to let my fears control my outlook. With a life as full of delight and joy and sunshine as mine is, it’s a pity to focus on the gloom.

A Few Thoughts Going In

I’m back in Salt Lake, sitting in my favorite chair with my rainbow hued throw behind me and the radiator throwing off gentle heat, and I’m letting all the worries, hopes, and fears run through and over me like water through a sieve. The last couple weeks have been trying and traumatic, and I feel completely unprepared for my doctor’s appointment on Monday.

One of my worries is that I have too much scar tissue to do peritoneal dialysis, which means I would have to do hemodialysis until I get a kidney transplant. Peritoneal, or PD, is a type of dialysis in which a catheter is placed in my abdomen, and I fill up the cavity around my organs with dialysis solution. The solution then pulls the excess water and toxins out of my body through osmosis. I would get a machine that would run the exchanges at night while I slept. Hemodialysis entails the patient visiting a dialysis clinic three times a week where a machine cycles blood out of the body about a cup at a time, cleans it, and restores it. I’m sure everyone has different experiences, but for me hemodialysis is extremely rough, and I feel awful all the time. I tend to tolerate PD much better. Unfortunately, because I have had so many surgeries on my abdomen, the scar tissue may be too extensive to allow the PD catheter to be placed.

I am hoping that I might be able to forego the hemodialysis all together. Usually I go on it for just a couple of months while the PD catheter is healing. If my numbers are good enough, maybe my doctor will let me skip that step and just wait for the catheter to heal. I have no idea how realistic this suggestion is, but it makes me happy just to imagine the possibility that this particular bout with IGA might take place without ever having to get the hemo catheter put in my shoulder.

I think my greatest fear is that I’m not going to be able to be who I need to be to get through this successfully. I feel so inadequate. I wanted my house to be completely organized before I started this, so that my OCD wouldn’t torture me so much, but I don’t see how it’s going to happen. I wanted to be able to finish up all the projects hanging over my head so that I could just relax and concentrate on getting well, but I’m so tired. I want to be who everyone thinks I am and wants me to be, but I feel so overwhelmed sometimes. Lately I especially feel like I’ve been letting people down because I’ve been trying so hard to make everyone happy. I’m also cranky, irritable, weak, and hyper-emotional. I know that I am a strong woman, but sometimes I just want to crawl into a corner and weep. I want to cry because at times I feel so lonely, isolated by my illness, by the way it feels when your body is dying by degrees. I want to cry out of sheer exhaustion and weakness. I want to cry for the dreams I’ve had to put off, again, especially that little baby about whom it is becoming almost too painful to dream anymore.

There are other things worrying me, and other things I’m hoping for, but as I let myself sit and be free to think about the worst and best case scenarios, the above is what comes to me most strongly. At the end of all this stream of consciousness thought-flow, like the sieve, I’m feeling empty and yet still wet through. I’m not sure if these kinds of ponderings are really helpful or not, but I feel better for having looked my fears and hopes in the face, instead of letting them lurk half-seen at the corners of my mind. Once I am aware of what I truly want and what I honestly dread, I can come to terms with how I will feel if they come to pass or not. Regardless, I feel more at peace with what I want to talk to my doctor about on Monday, and what I will work harder on trying to accomplish in these last few days before starting dialysis.

Realization and Grieving

I have been struggling to know what to write about this week; so much has happened that I keep finding myself unsure of how to approach such a tender subject.

Last Wednesday, Kohl’s dad passed away unexpectedly. I found myself suddenly switching roles with Kohl, as I tried to take care of him while he navigated territory that I knew nothing about. I had no idea what I could say or do that might help him, so I tried to say as little as possible and just be there with him and for him as much as I could. Now, a week after the funeral, I’m finding myself with several disparate thoughts all jostling around in my head, and I’ve decided to just let them fall out onto the page and hope someone finds them helpful.

Firstly, I need to express my gratitude for Kohl’s father. He was a genial, warm hearted man who loved music, technology, and sweets. He also struggled with health problems for most of his life. I think part of the reason Kohl is so patient with me as I go through my own struggles, is because he grew up seeing his mom take care of his dad. That patience and knowledge is only a small portion of the legacy that David passed to his children, but it has affected my life immensely.

Secondly, I have been putting a lot of thought into how we all experience such different trials. As I sit helplessly among my in-laws, wishing I could comfort them, but unsure of what to say or do, I have realized that what I have experienced has given me the ability to recognize and feel true compassion for others’ suffering, but it has not provided me with a true understanding of their pain. We are all surrounded by people with vastly different hardships than our own, and I have two very strong beliefs about that.

The first is that no one has it any tougher than anyone else, not really. We are fundamentally unable to feel exactly what anyone else feels, so we have no way to know how hard any one trial is for another person. What would be difficult for one person may not be very hard for another to deal with; likewise, what may be a simple hurdle for one individual may feel completely insurmountable to me. For instance, as lame as having a kidney disease is, and as frustrated as I get sometimes, it is a physical ailment, and I am not afraid of physical problems. My will has always been stronger than my pain. The most difficult thing I deal with, my secret trauma that rips me into shreds inside, is my inability to have children. It’s not as obvious as my kidney problems; in fact, no one meeting me would even know that it is an issue, but the aching pain of that wound makes my organ failure feel like a small thorn in my foot. One of my favorite sayings is, “Be kinder than necessary; everyone you meet is fighting some kind of battle.” We should never make the mistake of thinking we are better or worse off than someone else; life is going to test and teach all of us, and we don’t have the right or the responsibility to compare hardships.

The second thing I believe strongly about trials is that there is recompense attached to suffering, and I am not only talking about the blessings that various beliefs promise to those who are patient. There are blessings we gain in this life that are the direct results of what we go through. Our burdens give us the ability to feel sympathy, and sometimes even empathy, for others who hurt. As we struggle, we begin to see through different eyes. Sorrow provides wisdom, grief teaches compassion, and pain clarifies how to be truly grateful. This last week of heartache, I realized again that although I can’t always understand what the person next to me is feeling, I have learned enough to know that offering my unconditional support is often sufficient. I am here for whenever Kohl needs me, and because I am more familiar with sorrow, grief, and pain than I was, I will be able to recognize when that is. This is one of the ways that shadow enriches the light, and I am grateful for the eyes I have to see that.

I’m still feeling jumbled by this experience, and I know there are lessons I haven’t sifted out yet, but I hope I’ve made some sense. What are your thoughts about grief or trials? I would like to know how other people deal with helping loved ones through painful times. Does everyone feel as inadequate as I do?