as a means of self-escape

Two years ago today I had my ureter stent removed, after nine days of the worst kidney ordeal I’d yet faced. The device was placed on the twelfth after a brutal procedure, and that evening we had to make a call to paramedics; a couple days later I was in the ER. The entire experience was a nightmare. Removing the stent was scary and hardly pain-free; I remember simply letting my husband be with me for the ordeal because I didn’t have the ability to say yes or no, and because I knew he wanted to be there.

Today I felt an odd bit of kidney pain, only a little, a ghostly reminder. I have mastered the ability not to worry much, to predict it will get worse. Several years of pain, taught me some discipline. But the truth is I’ve had no major events since moving to a vegan diet; an entirely surprising yet welcome side effect. Every day, week, and month that passes without medical intervention and minor surgical procedures, I am grateful. We are still paying off the procedures from years ago.

So this time of year, yes I am grateful, grateful for my health.

I have planned an August sabbatical from client work; I have also cut down on social media significantly. Over the last few months I kept having friends ask me how I’m doing, and – since I am honest when people ask me this question – I had to confess I was a bit overscheduled. And confess it again, and again. Having disclosed this repeatedly, I realized I was responsible to do something about it.

Overscheduling is the kind of problem that creeps up, and it isn’t always a quick job to extricate oneself from these circumstances. So – carefully, with as much sensitivity for others as possible – I’ve been restructuring my life to a more sustainable pace. And this week, I’m starting to feel better, and more mindful; my yoga sessions are more refreshing and focused. My performances as mother and partner, are improving. Time is slowing – if only a little.

Tomorrow is my volunteer day; the day I devote the most time to others in my community. I am consistent with my volunteer work but I am also thinking about cutting back, or at least re-organizing. Today I know I don’t have to make any rash decisions on that count. I can wait, and meditate, and consult friends. 

And live to fight another day!

 

that little gas powered fireplace insert, oddly comforting

Two days ago my left hip felt a bit stiff; yesterday it woke me in absolute shattering pain. Alarming, really – I’d never had hip trouble before and certainly no trouble with a weight-bearing joint. It was bad enough Ralph and Beeps took me to Urgent Care for an evaluation, and was sent home with crutches and instructions to take an Alleve every eight hours, stay off the offending leg, and ice like a sonofabitch.

The treatment seems to have helped as today I felt about five hundred percent better. I am a bit irritated, however: clearly I retained a sports injury from my daily yoga, and it came (seemingly) out of nowhere and after what I thought was exceedingly mindful practice. The whole episode has left me a little shifted off center. I don’t get too upset about an injury or a setback; I do, however, feel peevish at the thought of re-injuring myself, and not knowing how to avoid it.

I am trying to move through my studio work: a wedding dress (finishing tomorrow!), two tunics and trousers (also finishing tomorrow), alterations for a client, three sweaters, and a bomber jacket. These are the items I have to finish before I can move on to something fun – or a birthday gift for my son, who turns fourteen in four days. And in between this entry and the last, I built a whole fricken’ website for a client! I am a busy little beaver.

Our kitty Pip curls up at my left elbow; he’s waiting for Ralph to climb into bed, so he can cram his little face in my husband’s armpit. Our evenings are familiar and cozy. I am increasingly in less agonies that my children no longer sleep with me – one of the biggest adjustments I’ve made in years. Time races through my hands and I can’t grasp it but in moments I can slow it down just a little.

Tomorrow: a tulle skirt in satin, and Chinese takeout with a girlfriend while we watch a horrible slasher.

overwork / natural high

Every day after coffee with my husband, I take a shower, tie my hair up and put on my little zip-up hoodie and get to work. I would work all day if I didn’t have other responsibilities; children, mostly, and volunteer work. And feeding myself so I don’t collapse. Lately I’ve been out of balance: too much work, too much time on other people. I need more rest; I want to take more care of my home. I scooted past a young man today at a recovery meeting, a young man with a broken face who had just a couple days clean. Mistaking my passing for affection, he gave me this little sideways hug. My heart breaks in these little ways when these moments happen; there is no point trying to express what I’m feeling so I don’t try. But I look at him and ask if he’s staying for the meeting, and I remember his name and I know it means something to me.

Back home and my children come by and pull me in for a hug (if I’m standing); they prostrate themselves across my body (if I’m laying down). The college quarter is over and my oldest child has, as a birthday present, a new computer. Both kids shout and laugh from their little basement gaming room; supremely happy. They need this time, and time with friends and food and sleep and affection and those are most of their needs. The house is only tidied when I can yell at the kids to do some work, and when my husband puts his incredibly efficient housework into effect. His body is strong and so is his mind and both rarely slip.

I am sewing on a buttery-soft jersey ITY; I am hanging up dresses on the dress form. I am hemming a little black dress and shortening sexy spaghetti straps. I am work, work, working to keep food in the refrigerator and try to stay on top of these bills. I am busy with the seam ripper with a little heater at my feet and the sunshine of Martina Topely Bird falling on my ears. And I suddenly realize in all our time together, Ralph never put his job before the family. He did his job but he stood his ground. And I think to myself what that shows our children about their value. I see so many straight couples where mother works her ass off and father has (or thinks he has) the big important job and is away from home or too tired when he gets home because he has Bills to Pay and I think it’s so often unfair, so often shit.

I stand up; stretch. My daily yoga practice is sluggish because I am tired in some way that defies explanation; still, my efforts keep those little kinks out of my neck, my shoulders, my hips. But yes I am exhausted, beyond tired. I have a call into a physician because I can tell something is wrong. Some nights by the time I’m in bed, I’m in a fog. I came out about this fatigue recently and as expected people shout explanations, solutions at me. These things can take time. I only hope I have the persistence to see it through, and that I am assisted by a pair of skilled hands and a good mind.

Illness

because sometimes you get a bit sad

Illness
Some readers won’t appreciate it, and I am sad for that, but this is the only visual I’m comfortable sharing from my recent illness. It took a few days to realize how seriously sick I was. The dehydration and infection really set me back. My husband helped me by carefully monitoring my medications and helping me take them. As soon as the antibiotics kicked in, I felt a little better. When the stent was removed, I was better still.

I am doing very well indeed these last few days, but I am sad too. It only took a few days to bring me so incredibly low. It’s a hard place to be. I fled my Buddhist practice during those very dark, very painful times. I could only show restraint in the way I communicated – and even then, I grew sharp. My husband came home later than I’d thought he would (should?) and I shouted, “Where have you been?!” I was doubled over in pain and very frightened. I felt very helpless.

I somehow recovered and then I jumped right into work.

So I am working again, and I am glad. But for these ten minutes I can admit, briefly, I would like to be able to rest a bit more. Can I do it? Will I let myself? Or do I just need to admit my weakness for a bit?

I want to be spoiled. I want hot chocolate chip cookies. I want an Aster & Bay face scrub. I want the hummingbirds to visit more often. I want a kitten to cuddle. I want a vacation I don’t have to pay for. I want dinner brought to our home, and to stay in bed. I want someone else to clean up my desk. I want the yard weeded and the deck lights strung instead of telling my husband to do it. I want to wake up tomorrow and have someone make me a pile of hot waffles.

But instead I settle for writing a bit. For taking a hot shower, and dressing in my soft pajamas. My daughter spends an hour with me before bed, holding one another and talking about our day. About our lives (“You’re a good role model to everyone around you,” she tells me). About our aspirations – for now, for the summer, for life.

She is off to bed, then my son joins me. He’s put the kitchen in order, and then readied for bed. His face is bright and keen from the evening’s wash. Sleep comes, for all of us, and soon. I’m tired enough I think I won’t stay up much longer. Just enough to write a bit, and then another night in our home, safe for now, and ready for respite.

Mr. Blue Sky / please tell us why

I found out I was wrong about the difficulties with my procedure on the twelfth. My sudden post-surgery illness was not due to a medication miscalculation or reaction, but rather the trauma of the surgery itself. “You had a really blocked-up system,” my urologist frowns at me. Like I did it to be naughty. “Like a cork,” he adds. He tells me it was so bad they did what they could but they had a limited amount of time.

I am shocked they didn’t tell me how bad it would be after the procedure, or give me something I could take for the pain. It would have saved me terror, agony, stress, and a second hospitalization.

Mostly – the fear. I haven’t had pain like that before. I thought something was terribly, unutterably wrong. And then things did get wrong. I am glad I recovered. I have learned a lot.

So now I am in a patient place, waiting for the next test. I am thinking about pain, and fear, and my Buddhist practice. I am going to get to go deeper than many people do.

Meanwhile I am well enough to work. I have several writing assignments, a web site (my new job!), and several sewing plans in the works. Tomorrow I meet with a client about custom garments. I’m tired but I’m doing okay. I get to be careful, to pace myself.

My child, my eldest, is off on a retreat this weekend – she is at a gathering meant to support children of alcoholic families. You can imagine how impressed I am of her, how much I love her for embarking on such a thing. Still, I miss her. She hasn’t been texting us much. I am lucky to get the lion’s share of the messages.

Night time and it’s time for kitties, for snuggling under blankets. For something easy to watch. To drift off to sleep. 

Tomorrow is another day!

ureteral stent

the latest appliance

ureteral stent

Today marked the end of a small, unpleasant eight-day epoch with the removal of my ureteral stent. I won’t bother posting links because you can look it all up yourself.

The fear set in last night. I did my best not to give this fear too much energy. Really, I slept pretty well all things considered. This morning I resolutely did my housework bits, and went off and picked up a sangha member to help her with her spiritual walk. 1:30 PM on the waterfront with my ladyfriend I took a couple Alleve and drank a healthy portion of water, the sunlight streaming in through the windshield and (most) everything okay with the world. My husband met me at the urologist’s and we sort of grimly waited events. The procedure was harrowing and unpleasant but not over lengthy. The urologist triumphantly held up the stent to show me, but I couldn’t look. I was too upset about what had just occurred. I thought it best to be quiet and courteous. Those were the behaviors I hung my hat on.

After I got dressed, Ralph and I met with the urologist in his posh little office and he confessed I was having too much trouble. Time to make an appointment with another specialist. Not really what I want to hear but, I am not driving this bus. I am along for the ride.

If I hear one more person telling me they’re sure I’ll feel better soon I might just have to slap them. No one can make that promise. Why bother? Wishes and prayers for my health and pain-free experience – I’ll take those.

Warming up outside and a bright moon; waning from the apex last night. My daughter and I on a walk with our dog, whose spirits are inexplicably low. His tail is a bit low and he seems cautious. I guess I kind of relate.

no matter how I try to disabuse you of that notion

Nightmares.

They’ve plagued me since my procedure, eight days ago. Two hospitalizations and one visit from paramedics, in the space of four days. Dehydration, secondary infection, and constipation. All of these are resolved today, but the combination made me so very ill and so very quickly so, that I am sobered by the experience. Now I’m on a regular medication schedule and that has been very interesting; I’ve never before taken loads of ibuprofen.

So in the last few days I’ve been able to do some work. More importantly, I’ve stopped fearing a sudden onset of pain that cannot be remedied. During the worst bouts, I had very dark thoughts indeed. Amazing how easily we can be brought low.

So the nightmares – why? Medicine? Stress? Both?

My children have been mastering more household work. Surprisingly, my son seems more focussed. My daughter has trouble.

Last night I sit at the edge of her bed, in the dark, and I ask her. Why didn’t she take the dog on his walk earlier? Why didn’t she finish laundry? She tells me, I don’t know. The room is heavy with her sadness. I ask, “How can I help?” She tells me it’s her thing. Her problem. She needs to fix it. I ask her if she still wants to do what she signed up to do. She says Yes. Her voice is firmer, now. I tell her, It’s okay, just try again tomorrow. It can be hard to learn new habits. I sense her easing off. She feels better. I say goodnight.

Downstairs to my son who has snuck my laptop and is trying to procure a half-dozen starfruit through mail-order means. He arranges his time these days between playing outdoors until all hours, and gaming in his little studio (Minecraft, mostly), and doing his household work. And then piling on me like a bag of sticks. Watching a little television in the living room while I’m resting after a bout of pain. He tangles up and kisses me over and over. I ask him, “What would your friends think if they walked by and looked in the living room to see you kissing your mom?” He smiles and says, “If they teased me I’d just say, ‘Oh you don’t like your mama? That’s so sad.'” We are giggling and wrestling a bit and he is trying to crack jokes, to make me smile. He wants me to feel better. He’s a child so he thinks its his job to fix me. I can’t really make him not feel that but I can reassure my children whenever I can.

We’ve had a break from hot weather; balmy days with an ocean breeze, but a threat of heat. In the night when I wake to take medicine, I pad into the kitchen for a drink of water and there is Herbert Pocket our little tuxedo kitty, all curled up on top of the stove. I know I should shoo her off but I can’t. I have to pet her and she stretches and splays out her back toes and curls her spine, belly up, asking for some love. I don’t particularly like being up in the middle of the night and being ill, but I do love my house and the safety I feel, and that I have in some measure provided the same to a few other sentient beings. 

Under The Knife

what wound did ever heal but by degrees?

On Tuesday I had a small surgery scheduled suddenly – to take a camera into my kidneys, destroy stones via laser surgery, and install and a ureteral stent. I was very brave about the whole business. I am getting better at being brave.

I had this plan. I decided not to worry about the procedure, about anesthesia, about pain, about nausea, and about a stint installation. I decided not to worry until right before it happened. The anesthesiologist started wheeling me down the hallway and giving me the medicine – pain medicine and Versed, the magic cocktail of amnesia. I remember the anesthesiologist running my cart into the doorway, and in consternation apologizing. This was very funny indeed. My life is in your hands, buddy!

Then the operating room. So many more people in there, than it would seem necessary. Everyone friendly. I am on my way out. Goodbye!

When I awake from surgery, I am very very ill. I had an anesthesia not that long ago, for lithotripsy, without complication or illness. So this time they either gave me a different series of medications while I was under – or simply more medication. I throw up – over and over – all day long. So: no pain medicine. By the evening I am in so much pain am voiding from bladder and from belly uncontrollably. Cue a visit from paramedics – my first. I am on the couch sweating through my clothes. My pajamas are urine-soaked. I am chanting and moving rhythmically through the pain. Sometimes the swell ebbs and I experience the bliss of less pain. When this happens I can hear what the paramedics, what my husband, is saying.

My poor husband. He holds up well enough, but this is the kind of thing to make him very worried indeed. He cooks for me, buys me flowers, heats up a rice pack for heat. He takes the dog to the vet and helps the kids do their housework. He washes out my vomit bag and makes the bed when I’m not in the bed.

I am set back far more than I’d realized. I keep thinking I’ll be able to get up and go somewhere, but it’s not forthcoming. More rest. More fluids. Lots of blood.

Patience.

My children are old enough to run the household. But not without direction. I am in and out of sleep much. The pain keeps me from wanting to be held. But the kids come in and ask respectfully. Last night, Phoenix held me close while I watched some Bob Ross. She giggled at his lovely, gentle mannerisms. I knew she’d like him. She liked his painting techniques, too.

She is off to bed and my son comes in. By now I am ready to sleep in earnest. I ask him if we can fall asleep together. He says Yes, of course. And so we do.

Middle of the night, pain awakens me. More ibuprofen. Back to sleep.

It sounds a bit rough, but almost anything is better than Tuesday was.

Under The Knife

this secondary level of suffering

I’m not sure when life seemed to get a bit tougher, but it seems to have something to do with the increasing amount of pain and suffering my kidney condition inflicts. The pain isn’t devastating and it isn’t life-threatening but it is frequent and sometimes it gets worse quite rapidly. I am determined to be entirely honest when people ask me how I’m doing, how I’m feeling. I’m determined to tell them “low levels of pain”, or on some days, “it’s been rough.” I’m firm that I won’t say “fine!” when asked how I am. I often say, “I’m having kidney pain, but emotionally I am doing well.”

Of course, it’s a bit more complicated than that. I think that having constant pain would wear on almost any emotional life, whatever one’s attitude. I keep returning to the thought there’s something different I should be doing. Some wall I should be trying to climb. As if there’s much different I could do.

Or the practical stuff. There is pain medication I can use. It does help. When I have it, I take it sparingly. And doctors, these days, prescribe it sparingly. Well, some of them do – including my kidney doctor. I can get more medication – but every refill requires another x-ray. An x-ray where they find yes, surprise, more kidney stones. An x-ray that costs us, and an x-ray that exposes my body to more radiation. It’s a yucky choice.

Welcome to life on life’s terms!

I’ve had a member of the community show up – at my door, in the morning – offering cannabis in some form or other (I didn’t ask for more information). Yes, at my doorstep. It was kindly meant, I am absolutely sure. I am too tired to be irritated or judgmental. I am too tired to do much of anything but try to keep a good attitude.

The pain brings gifts, and not trifling ones either. Spending some time helping others takes on a new meaning. In helping others I am transported into a reality, and out of my pain momentarily. I can experience creation and be loving and kind and not be blinded by misery and discomfort. I can have respite from a cruel illness and (occasionally) a punishing mind.

So please believe me that when I tell you to stop beating yourself up, to be kind to yourself – that I really am brave enough to do the same.

I find that, watching other people enjoy their life, is also a gift. My children are, no surprise, my greatest gifts. As I write this my son snuggles under my comforters, waiting for me to join him and cuddle him. My daughter is cozy upstairs watching a movie I rented her, a classic, on her headphones. Her enjoyment, her living and breathing and pain-free body, gives me so much joy. My son’s body under the covers in morning sleep – buying them lunch – talking to them about their troubles.

All these things: gifts beyond what money could buy.

Penny Dreadful on Twitter

tv time! and other failures of late

I’ve been very sick for two and a half days – a cold that has me wrecked. Dizzy, coughing, sneezing, congested, the lot. Yesterday the cold conspired with a nasty kidney stone and I was shaking and sweating in my bedroom, listening to my mother in the other room talking cheerfully while devouring a fresh bowl of pancit made by my husband. I didn’t precisely want no company, but I wasn’t fit to entertain either.

Rather incredible how, when being confined to bedrest, the world instantly seems smaller and more daunting.

I’ve caught up on television and film; I watched The Big Clock (1948), Carol (2015), Tangerine (2015)epic!, and finished off “Penny Dreadful” with a girlfriend’s company (via Twitter). I tried to watch “The Man in the High Castle” (I probably don’t have the U.S. history chops to understand much), and even gave “Daredevil” another spin, as well as the new(ish) season of “Whitechapel”.

Sound like a lot of telly? Well for me, it absolutely is, because while I like watching television just fine I don’t tend to watch it daily, and especially not all day.

No, life right now consists of me shuffling from bed to bathroom (to pee, or shower), back to bed. Getting popsicle and water deliveries from my family. Getting just a few hours of sleep per night. Steadfastedly not worrying about earnings I can’t make, appointments I must cancel, and an upcoming trip I need to prepare for.

No, today life is about the practice of patience.

Easy to talk about it. Not so easy to practice it.

Penny Dreadful on Twitter