After months of worrying symptoms and doctor visits and medication, Ellie’s heart failure has stabilized enough so that we finally felt safe taking her to the groomer to deal with her very overgrown mop of hair. It was also Ellie’s first visit to the groomer alone since she’s been with us (four years!), because Cricket doesn’t need much grooming and I didn’t think she would be up to the stress of it anyway.
“I’m perfect just as I am.”
As we were leaving the apartment, I made sure to give Cricket a Greenie (a green dog treat, shaped like a toothbrush, with questionable teeth cleaning capabilities) to keep her occupied while Ellie had her leash put on, and immediately, Ellie snapped her teeth on the Greenie, already in Cricket’s mouth! They stood there fighting silently over that Greenie with all of their might, and somehow Cricket managed to hold on to it until I could convince Ellie to let go and follow me to the front door.
And I was sort of in shock.
Ellie, my calm, loving, usually submissive sweetie pie, had actually tried to steal food from her grumpy, stubborn, aged sister’s mouth?!
“Who, me?”
I was laughing out loud as I led Ellie outside, thrilled both that Ellie’s appetite was back in full force, and that Cricket still had the strength to fight for what was hers.
Once outside, Ellie ran gleefully to the car, seemingly forgetting that she’d missed out on a treat, possibly because she’d finally remembered that she’d had a full breakfast just moments earlier.
On the drive to the groomer, Mom sat in the backseat with Ellie to keep her company and defuse her car anxiety and the weirdness of not having Cricket there with her. When we dropped Ellie off at the groomer, I started to feel more anxious about leaving her there, out of my sight, for hours. She still coughs every once in a while, even though her medications seem to be managing most of her heart failure symptoms. But I tried to be positive and focused on driving Mom to her Neurologist’s office, where she would hopefully find some relief for the pain in her legs and feet, if not a cure for the numbness that has prevented her from driving lately. And then, while sitting in the waiting room at the doctor’s office, I was preoccupied with worrying about Mom, and worrying about leaving Cricket alone at home for so long, and then worrying about fifteen or twenty other things swirling in my mind, and there wasn’t much room to worry about Ellie, who, at the very least, was not alone.
After the doctor’s appointment we had to stop off at CVS to pick up prescriptions, and to drop off one for Ellie (because one of her medications is only available at the human pharmacy), and then we went to the market that always has chicken livers, unlike our regular supermarket, because when Cricket is refusing to eat anything else she will still eat chicken livers. She’s often not hungry in the morning, but that’s when we need to give her the doggy Xanax to help her calm down enough to receive her subcutaneous fluids to manage her kidney disease. Chicken livers, and cinnamon buns, oddly, seem to be our most reliable treats when the wet dog food isn’t tempting enough.
And then we were back at the groomer to pick up Ellie, who was now less than half the dog she’d been a few hours earlier, and thrilled to be going home.
Cricket was standing at the door waiting for us when we returned home, and she thoroughly examined her shorn sister, to see what fresh hell she’d been through, but more importantly, to find out if she’d had any secret treats (she had, her groomer loves to give her treats!).
And then the dogs banded together to beg Grandma for even more treats, eventually running out of steam and deciding to start their favorite afternoon activity, sleep tourism, wherein they proceed to take naps in as many different places throughout the apartment as possible. And then I was able to relax too, knowing we’d all made it through another challenging day. Together.
If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.
Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?
A couple of weeks ago, when Cricket lost the ability to hold off peeing until she could reach the wee wee pad by the front door, we created a yellow brick road of wee wee pads, from Grandma’s bed to the front door, to help her out. And, either as a result of the Gabapentin and ACE she takes every day (in order to tolerate the subcutaneous fluids for kidney disease), or because of incipient dementia, Cricket has started to pace around the apartment at all hours, peeing along her wee wee pad path, especially in the middle of the night.
After she’s jumped off Grandma’s bed, to get a drink of water and to pee, Cricket will come to my room, sometime around four o’clock in the morning, and bark at me for the mommy-elevator up onto my bed, where she wanders around and around in search of the perfect sleeping spot, which is often elusive. For some reason, Ellie has decided that instead of staying in my room at night, the way she used to, she prefers the wee wee pads – at least the as yet unused ones – as her favorite place to sleep.
“Are you telling my secrets, Mommy?”
When I accept the inevitable and finally get up, around 7 AM, Cricket and Ellie are ready to go outside, walking down the stairs together if Cricket is up to it. Neither one of them can run and play the way they used to, but Ellie gets a lot of enjoyment just by standing still and listening to the sounds of the neighborhood, while her sister wanders around the yard sniffing all the smells.
When we get back inside it’s time for Ellie’s medication, carefully stuffed into small pieces of chicken or chicken liver, with a few pieces going to Cricket as well. And, if she’s willing, Cricket gets her ACE and Gabapentin in her food too, so we can get her fluids done early and give her time to pee it all out during the day, instead of needing to walk her path so much overnight.
“Give me more fluids and I’ll be swimming down the hallway!”
We’re still in the trial and error phase with all of this, constantly adapting their diets and schedules and adapting our expectations of what they can and can’t do, based on how things are going each day. Ellie is mostly consistent, though she needs new high value treats every few days to help her tolerate all of her pills. Cricket is the wild card. Some days she seems like she could go at any moment, and other days she seems so normal that we almost get complacent. Almost.
We’ve started to get rid of rugs that have been peed on too often, by both of them, and we’re doing a lot of extra laundry, but we love them, so we walk the wee wee pad path, replacing one pad here and there as we go along, trying to keep them happy and comfortable. I wouldn’t have chosen this, but I wouldn’t want to miss a day of having them in my life either, so this is what love looks like right now.
If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.
Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?
A few weeks ago, maybe after the apocalyptic day in New York, when the skies turned orange and everything smelled of smoke because of the Canadian wildfires, Ellie started to cough.
“Are you talking about me?”
It’s not that she’d never coughed before. In fact, she has a full menu of interesting coughs and sneezes to her name: including the how-dare-you-pull-on-my-leash cough, which sounds like a frog is jumping out of her throat; and the excuse-me-where’s-my-dinner cough, which is more like a whisper, with her head turned away for deniability. But this cough was something new. It sounded like she was choking on something, or suffocating, and then she’d sort of cough up whatever it was and collapse as if she’d run a marathon.
The first time I witnessed this, I was afraid she was going to die right in front of me. I may have taken it more seriously as a result of the debarking surgery that was done when she was still a breeding dog, because the scar tissue from that surgery has made her throat more constricted than it should be.
It was a few days before I witnessed another coughing attack, and I was shocked by it again, especially by the way she seemed almost paralyzed for a couple of minutes afterward, but then she was fine, and I was relieved. She started to cough more frequently after that, but with less seriousness, and I wondered if maybe it was just an allergy, exacerbated by the air quality, and, really, I was distracted. Cricket had been diagnosed with kidney disease and needed fluids every day, and we’d had a car accident and had to buy a new car, and I’d had to go to five or ten doctors’ appointments, and prep for my second oral surgery (the follow-up to last year’s surgery), and that’s only the top line of the chaos that was going on around here, and there was no way to keep up with all of it, so each time Ellie stopped coughing and seemed to be breathing and walking and eating okay, I just breathed a sigh of relief and let it go.
But last week, when Cricket had to go back to the vet for a follow up blood test, and I was between medical appointments, it seemed like a good opportunity to bring Ellie in to be seen as well.
Of course, as soon as we made the appointment for both of them, Cricket, who had been doing surprisingly well, had a downturn. She couldn’t eat and she was woozy, even without the calming meds, to the point where she allowed me to insert the needle for the fluids without a fight. We all went to bed that night thinking this was the end, and we’d have to leave Ellie home the next day, and bring Cricket in to the vet for the last time.
But in the morning, my little phoenix rose from the ashes again, climbed up and down the stairs herself, ate her breakfast and demanded more.
“I’m hungry!!!!!”
So we went, all together, to the vet, me as the chauffeur in the front seat, Mom sitting in the back with both dogs, so that Ellie wouldn’t have to sit alone back there (Cricket has never tolerated sitting in the backseat. When we would put her in a harness early on in her life, she’d escape within thirty seconds and make her way up to the driver’s seat). With Cricket and Grandma sitting next to her, Ellie got through the ride without crying once, though she was still breathing heavily.
I carried Cricket into the vet’s waiting room, not wanting to have her walk on the hot ground (Ellie refused to be carried), and the vet took Cricket out first, to take the blood, and then focused on Ellie and her cough. I tried to reenact the cough for him, so he’d know what he was dealing with, and he gave me a look and said, “Can you do that again?” It took me a second to realize he was joking. If he has a sense of humor it is very, very dry. He checked Ellie’s heart and looked in her mouth and took her temperature (which she found horrifying), and he gave her an anti-inflammatory shot and sent us home with antibiotics and a cough suppressant for her to take twice a day, and he said to call him in a few days and let him know if she was coughing any less (because if not, he’d want to follow up with an x-ray).
And we were free. This visit, which, for a few hours there had seemed like it would be the last time I ever saw my Cricket, turned out to be routine and quick. When we got home we were all ready for an afternoon nap, maybe me more than everyone else, to be honest.
“Oy.”
Both dogs were thrilled with their treats (with their separate meds hidden inside) once the naps were over: Cricket discovered a great love for sardine juice, and Ellie discovered that she had no such great love and stuck with pieces of chicken.
Ellie coughed less for a few days, though she became more and more picky every day about the treats within which we could hide her pills, but then the coughing came back, and Ellie was barely eating anything at all. We called the vet and he said to stop the antibiotics, because they might be causing her lack of appetite, but keep up the cough suppressants for a few more days and then call back.
Pretty quickly, though, it was clear that Ellie was getting worse. She was breathing heavily, leaving treats uneaten (where Cricket could easily steal them), and refusing to walk more than a few feet at a time. So we called the vet for an emergency appointment this morning and brought her in, and as soon as he saw her he said she didn’t look good at all. He took an x-ray and said her heart was huge and misshapen, and there was fluid collecting around her heart. He gave her a shot of a diuretic and told us he would send the x-rays on to a specialist and then let us know what medication she could take going forward. But, he said, she could collapse at any time. He couldn’t explain how she’d gone from having a little bit of a cough to being in heart failure within a week, but most likely the cough had been caused by the enlarged heart in the first place, pressing on her trachea.
Ellie’s home now, still breathing heavily, but peeing rivers, which will hopefully relieve some of the pressure on her heart. But my heart is overwhelmed. Cricket is oblivious: sleeping on Grandma’s lap, eating well, and barking her frustration at all of the attention her sister has been getting. And now we wait, to see what comes next.
If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.
Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?
A few weeks ago I was afraid Cricket was on the edge of life, diagnosed with kidney disease, struggling to walk, knocking into things. We started giving her subcutaneous fluids on the off chance that it would help extend her life, and it’s actually working. Though in order to give her the fluids we have to medicate her with a combination of gabapentin and ACE, which makes her woozy for hours. At times, she seems like a wraith, her feet slipping out from under her, not even protesting when the needle slips under her skin.
Ideally, she would have gotten used to the whole procedure by now, and she wouldn’t try to pull off the muzzle, or lift up her head to get away from the needle. Ideally, I’d never have to give her any calming meds at all and she would just accept the fluids as a necessary evil and get it over with and get back to living her life. But then she wouldn’t be Cricket, and all of this effort is to make sure she gets to be Cricket for as long as possible.
“Oh, I can be even more Cricket-y. Just wait.”
Every day, at the beginning of all of this, I was afraid she was going to die overnight, and when she actually woke up in the morning, and ate her breakfast, I was surprised, and afraid to be hopeful. But with each day she seems to improve a little bit. The meds make her into a rag doll, yes, but then the next morning, after she’s slept it off, it’s like she’s been brought back to life, refilled with her fluids and her spirit, and ready to sniff the whole world again.
It’s still nerve-wracking to watch her skin fill up with the fluids. I even worry sometimes that her neck is going to explode (I’ve seen too many movies), and I worry that I’m going to put the needle in the wrong place and puncture something vital. I was worried for a while that I was inserting the needle the wrong way and causing scar tissue to form because I could feel these quarter-sized bumps under her skin and I was afraid I would run out of loose skin and not be able to give her the fluids anymore, but then the bumps started to dissolve, and that worry, at least, went away. So much of this is trial and error and the circumstances seem to change every day. It feels like a magic trick each time she wakes up in the morning and walks and barks and eats and acts like herself, but a magic trick that is unreliable and hard won.
I’ve been thinking about my friend Teddy, the miniature poodle, who died from kidney disease a few years ago. His death came as a surprise, at least to me. He hadn’t been diagnosed with the disease ahead of time, and by the time they caught it he was too far gone to be helped by fluids or anything else. When Cricket was diagnosed I was afraid it would be the same thing, and every day, even though I knew her case was different, I expected the same results.
Some days are better than others. Every once in while she has a bad night, her breathing is shallow, she pees on the floor because she can’t get to the wee wee pad in time, or she’s not up to climbing the stairs, but other days she seems to be getting better, growing stronger, and enjoying her life.
I was telling myself that I just needed Cricket to reach her sixteenth birthday, but now that she’s accomplished that goal, I need more. I need to feel like I did everything I could possibly do for her. I need to not have any regrets, and not feel like if only I had been stronger or smarter or kinder or more loving, she would have lived longer.
I’m also doing my best to make sure Ellie doesn’t feel left out, and gets extra hugs and scratchies and treats to make up for all of the attention her sister is getting. But when Cricket feels better she goes back to taunting Ellie, so then I feel guilty for taking such good care of Cricket and, at the same time, I feel guilty for not taking good enough care of her.
“If I keep my eyes closed she won’t bother me. Right?”
The thing is, Cricket isn’t giving up. She doesn’t think sixteen years is enough, even if each day is a little harder than it used to be. And if she’s going to be this stubborn, then I guess I’m going to have to be stubborn too.
If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.
Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?
Cricket has kidney disease. She had a really bad day recently: she fell down the stairs when she was coming in from a walk, and had to be carried up and down the rest of the day. By the next morning, she was back to herself, climbing the stairs and eating her breakfast and barking at the UPS guy, but we took her to the vet anyway and he checked her out and took blood and the next morning he called to say it was her kidneys, but he’d need a pee sample to know if she also had an infection. I had to follow her around all day with a ladle, collecting a teaspoon of pee at a time and storing it in the fridge until we had enough to bring to the vet. Thank god, Mom didn’t take the picture she threatened to take of this particular activity. The results: no infection, but very watery pee, confirming kidney disease, so we’d have to go back to the vet and learn how to give her sub-cutaneous fluids once a day. With a very big needle.
“I hate needles!”
Cricket only weighs 9.5 pounds now, down from her original 14 pounds, and she looks like a naked chicken from the neck down, but she still has her rebellious spirit. So as soon as I knew I would have to put a needle under her skin every day, I started searching everywhere for her muzzle. We’d never actually used it before, but we had it somewhere, just in case, because she is a biter. I finally found the muzzle hidden behind her old harnesses and winter sweaters in the hall closet, and she let me put it on her, for a moment, before she started trying to pull it off.
At our next appointment, the vet demonstrated how to hang the fluid bag on the door, and hold Cricket still, and pull up the extra neck skin like a tent and insert the needle, and Cricket calmly let him do all of this. We watched her neck swell up like a balloon, which he said was totally normal, and then he removed the needle and pinched the skin so that the fluid wouldn’t spritz out. Then he showed me how to change out the old needle for a new one, easy peasy. By the time we got home, Cricket was feeling so good that she skipped down the lawn on her way to the front door.
My first attempt at giving her the fluids myself, the next morning, went almost as easily as when the vet did it, even with the big needle and the bite-prone Cricket, but on the second day, she rebelled. She bared her teeth at me, and pulled away from the needle, and then she bit me, three times. I tried again later in the day and managed to get the needle under her skin and a small ball of fluid in her neck, before she bit me again.
“You bit me first!”
On the morning of day three, we tried giving her food during the procedure, to keep her distracted, but she turned the bowl over and spread the food all over the floor and hopped over it to get away from the needle. So, in desperation, we gave her a quarter of a doggy valium, and waited. An hour later I was able to put the muzzle on her, and insert the needle under her skin, and give her the rest of the fluids she should have had the day before. The only problem was that we had no more doggy valium. So off to the vet we went to get more medication, and incidentally, to make sure it was okay for her to take it every day. It was, but even that small amount of ACE (the doggy Valium) made her stumble around and wiped her out for the rest of the day.
“It helps to have somewhere to put my head.”
A week after starting the fluids, we took her to the vet for another round of blood tests, to see if the fluids were helping, but when the doctor called the next morning, it turned out that her kidney numbers were worse. He told us to keep doing the fluids, with some added B vitamins, and he gave us Gabapentin to try instead of the ACE, to see if the combination would give her more good days. He had no prediction for how much time she has left. He just told us to keep an eye on her eating habits, and if she doesn’t eat for three days in a row then that would mean she’s suffering and it will be time to let her go.
We tried the gabapentin to no effect, so we went back to the ACE, but decided to give it, and then the fluids, at night, so that she could sleep it off and wake up feeling better, and that seems to be working better for her.
I don’t have high expectations, but I’d like for her to enjoy the end of her life as much as possible, and I’d really like to have a little more time.
“Where’s the rest of the chicken?”
If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.
Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?
We were in a car accident a few weeks ago. I didn’t write about it at the time because Mom was shaken up and didn’t want her aunt to worry.
Mom has been losing feeling in her feet for a few years now, and going to all of the doctor visits to try to figure out why and how to stop it, but nothing has worked. It has mostly impacted her balance, because she can’t feel the ground as well through her shoes, so more often than not, when she takes the dogs out for a walk, she goes out in her socks or bare feet.
“We go outside barefoot all the time. What’s weird about that?”
For some reason, that evening, on our way to synagogue, she wore a pair of shoes she hadn’t worn in a while, and very early in the drive she realized her mistake, because she was having trouble feeling the brake pedal, but when I suggested that she pull over and let me drive, she said no, she was fine.
But she wasn’t fine, and at a crucial moment, when she thought she was stepping on the brake, it turned out that she wasn’t.
She could have had another career as a race car driver, so even without brakes Mom was able to maneuver through traffic to get to safety, with only minor damage to another car, but our little red Honda was basically totaled, not so much because the accident was terrible, but because the car had so many miles on it that the insurance company thought it wasn’t worth doing all the necessary repairs.
Mom was in a daze after the accident, overwhelmed that she’d been the cause of it and frightened that the numbness in her feet might take away her independence. But as the days passed she decided that it really was that one pair of shoes, and with thinner soles she could still feel the brake pedal and drive as well as before. At least for now.
We were both fine, physically, and to my surprise I really didn’t have much of a post-traumatic stress response like Mom did, so I did most of the driving, and emptied all of the gardening tools and grocery bags and random detritus out of the old car before the garage took it away. Thank God, Mom was up to making all of the phone calls with the garage and the insurance company and the rental car company.
“I hate phone calls.”
As soon as we found out that the insurance company didn’t want to repair the Honda, we started to look for a replacement, and since Mom has been wanting a car that’s easier to get in and out of for a while now, she had a good idea of what she wanted. We went to the nearby Subaru dealer and found a lightly used charcoal grey Subaru Crosstrek, which also has some safety features we didn’t have in the Honda. It’s a good car, and comfortable, and has lots of trunk space, and the driver’s seat can be maneuvered every which way, to give Mom the best possible control over the pedals and view of the road, but it’s not red.
And there’s this deep sense of loss. The little red Honda Civic has been part of our family for a long time, and I’m used to her. Switching to the rental car, a white KIA, with a push button start and rearview camera and lots of bells and whistles, took some adjustment, and the car didn’t smell like dogs and wet dirt from Mom’s gardening adventures, so it really was a stranger.
I’m pretty sure the trunk of the new car will be filled with gardening equipment within the first few days, and there will be dog treats stuck into the cushions, and it will start to smell right. And it will be a relief to know that Mom can keep her independence and feel, and be, safer. And the car only has 25,000 miles on it, so we’ll probably be able to keep it for a long time, until it too becomes like family. But the loss is real. Things are changing.
“We don’t like change, Mommy.”
If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.
Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?
For a few weeks, recently, my mother was worried about me. Okay, she’s always worried about me, but more worried than usual, because my blood pressure was high. My blood pressure has been relatively high since December, but my primary care doctor wasn’t especially worried, so I ignored it. But then I went to the gastroenterologist, to finally see about my first colonoscopy, he said I’d need an okay from the cardiologist before he could move forward; so I went to the front desk and made an appointment with a cardiologist in the same office, where the wait is approximately an hour and a half and the doctor generally ignores whatever I say.
But while I was waiting for that appointment to arrive, my blood pressure (measured on a home blood pressure monitor), kept going up and up, especially the bottom number. And Mom said I couldn’t wait for my scheduled appointment and instead made me an appointment with her own cardiologist, for the next morning.
“I could ignore you without all the waiting!”
I got up early and grumbled as she drove me to the doctor’s office, and then I grumbled through the tech taking my blood pressure four times, twice on each arm, and then through an especially thorough EKG, and then there was an Echocardiogram in another room and blood tests in a lab down the hall. I was exhausted from the whole ordeal, but I had to go to work afterwards, so I grumbled as much as I could at home and then switched into teacher mode on the drive to the synagogue and tried not to grumble for the rest of the day.
“Unsuccessful, Mommy.”
The next day, after tests showed I didn’t have a blood clot or heart damage, the cardiologist prescribed a diuretic and told me to call my gynecologist to see if she could change or just stop my birth control pills (prescribed for Polycystic Ovarian Syndrome and painful periods), because they could be raising my blood pressure and adding to the risk of blood clots.
I started the diuretic the next day, and stopped taking the daily birth control pills, and after a week, my blood pressure was back to normal, but I was dizzier than usual, and in more pain and still dealing with all of the other long term issues no one has been able to explain (headaches and dizziness and exhaustion and muscle pain and intermittent walking problems and nausea and belly pain).
Then I had to go for more blood tests and an echo stress test (which is a beast of a combination, with a treadmill and a thousand wires and a torture device rammed into my rib cage at random intervals), and I was told that my Normetanephrine and Aldosterone numbers were off kilter, both related to the adrenal glands in some way, and a possible cause for the high blood pressure, and I’d need to see an Endocrinologist and a Nephrologist for further testing. No, wait, not an Endocrinologist but a Gastroenterologist, but not the Gastroenterologist doing the colonoscopy…oy. So I had to put off the colonoscopy, which means I’ll have to go for an extra consult closer to the colonoscopy or else the insurance won’t cover it, and then there’s the new Gastroenterologist, who is hopefully the right doctor and not a miscommunication, and then I may still have to go to a Nephrologist, and who knows how many tests and appointments will come from all of that, or if I even have an issue with my adrenal glands, or if it’s at all related to the rest of my symptoms or yet another tangent.
And, yes, I know I have to do all of it, of course. But I’m so tired, and I’m in more pain than I was before, and I still have to teach, and the weather is getting warmer, which makes everything worse, and… I clearly have a whole lot more grumping to do before this is over.
Harrumph.
“Harrumph.”
If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.
Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?
I’m trying to get back to exercising, in small bites. For months, each time I tried to get back on track after a particularly bad flare, I would return to my previous exercise routine: forty-five minutes on the recumbent bike, twenty minutes of physical therapy exercises for my neck and upper back, and ten minutes of yoga stretches. And then I’d be exhausted and wouldn’t even think of trying again for another week. And then, when I was recovering from oral surgery, and I knew I didn’t have the energy for any of those things, let alone all of them, I just stopped trying to exercise altogether. But that didn’t work for me either. I started to feel stiffness and pain returning to my neck and upper back in ways I’d thought I was done with, and, even more worrisome, I was often out of breath just from walking the dogs. It became especially obvious when I had to sing for hours at a time with the choir, during the High Holiday services at my synagogue, and I’d have to skip notes here and there just to breathe. I’d noticed the breathlessness months before, too, when I was still able to do my regular exercise routine three days a week, but at least back then I could tell myself that I was doing something to fix it.
“Breathe like me, Mommy!”
So, I started with breathing exercises, two minutes a day, to gradually build back my breath capacity for singing. And then I went looking for some short exercise videos on YouTube, and I found a bunch of five and ten minute Yoga videos and re-found a five minute Tai Chi series I’d done a few years ago, and started with those.
The problem is, I get obsessive. I ended up spending hours searching for more videos, and thinking I should try all of them, instead of just sticking with one or two. And then I got overwhelmed by all of the videos that came up on YouTube, promising weight loss/tightened facial muscles/removal of all anxiety/release of all trauma, in minutes. I’m so vulnerable to those promises, because I hate how long it takes to make progress, and I hate how circuitous the route to healing has to be, and I hate how confused I get, and I hate how easily I can get off track until I can’t even remember which track I was on or why. But after watching a bunch of those videos I felt even worse about myself, because they were telling me that the effort I’ve put into healing has been wasted, and I could have done it all in a matter of weeks if I’d just bought into this or that program from the beginning.
“Oh please.”
And then I was watching an hour-long Yoga video and berating myself for not even trying to do all of the exercises and the noise in my head became extreme, and mean, and persistent, and exhausting.
And the reality is, I can’t do all of those things. And there is no magic cure for trauma or chronic illness. But I can do five minutes of Tai Chi, or five minutes of standing Yoga, and two minutes of breathing exercises, or even four. And I’m doing those things. And if I keep it up, I will be able to do a little bit more and a little bit more. And that is always how it has worked for me, and I know that, even if I hate it. So it’s back to small bites, for me, and one step at a time.
Harrumph.
“We like BIG bites!“
If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.
Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?
I had a doctor’s visit scheduled for this past week at a hospital in Philadelphia called CHOP, Children’s Hospital of Philadelphia, which is kind of embarrassing. All of the paperwork for my visit included references to “the child” this and “the child” that, and I am, of course, an adult. I worried that somehow they’d missed that detail in my medical history and when I walked into the hospital they’d be horrified that I was so tall. But, I was told that this was the place to go for a possible mitochondrial disorder, so this is where I’d have to go, no matter my age.
This particular adventure started back in March, when I heard from the geneticist that I had some genetic variations that needed to be looked into, and she gave me referrals to a neuromuscular specialist (to check out a possible LMNA disorder, in the Muscular Dystrophy family), and to CHOP (for a possible Mitochondrial disorder). The appointment with the Neuromuscular specialist was easy to schedule, but the process of getting an appointment at CHOP took at least a month, because they had to collect all of my records from various doctors and hospitals to see if they really wanted to take on my case, and, of course, they needed pre-approval from my insurance. Eventually, they sent me a welcome letter telling me that I’d have two appointments on a Wednesday in July, one at nine in the morning with the lab, and one at ten thirty to see the head of the Mitochondrial medicine department. The idea of going to Philadelphia for a doctor’s appointment, a three hour trip each way, was already overwhelming, but to have to be there at nine in the morning?
“Don’t worry, Mommy. I can wake you up in the middle of the night if necessary.”
Mom said we could go the day before and stay over at a hotel to make things easier, but it sounded so expensive and complicated to me (Do we bring the dogs? Would Cricket actually stay calm in the hotel room while we were at the hospital? Could Cricket survive being boarded, even with her sister for company? Would we drive or take a train?), but Mom was confident that it would all work out; and it was still only April at that point, so the specific plans could wait.
And then Mom went to the orthopedist and found out that she needed a hip replacement, immediately, and we fell into the whirlwind of pre-op testing and surgery and recovery. Even then, Mom was still convinced that she’d be well enough to make the trip to Philadelphia, so we focused on getting her well and continued to put off planning the trip.
My appointment with the neuromuscular specialist, about forty-five minutes away, came up a few weeks ago, the week after Mom’s post-surgical check up with the orthopedist (which went great!), so Mom wanted to test her strength and come with me. I drove, and held doors, and watched Mom maneuvering her cane like an oar, and Mom listened carefully to the doctor to make sure I didn’t miss anything important. The doctor was very thorough, and thoughtful, and put me through a lot of physical exercises and questions and said, eh, I don’t think you have an LMNA disorder (no muscle-wasting, no falling eyelids, and no to a lot of other things on her list), but she was optimistic about my upcoming trip to CHOP, and said she thought a Mitochondrial disorder could be a better fit for my symptoms.
I was proud of myself for managing the drive and the doctor visit, and for not being too bothered that yet another doctor and diagnosis had fallen through, but Mom was exhausted by the trip, and by the next day she’d realized, very reluctantly, that she wouldn’t be able to come with me to Philadelphia, even if we did the whole thing by train and boarded the dogs for two days. So I would be making the trip alone.
“Why can’t I go on the train with you?”
I know it shouldn’t be such a big deal for an adult to travel to another state alone, but for me it’s a lot; both because of the inevitable physical exhaustion of the trip and because of the anxiety that floods my brain when I try to manage new situations. So Mom called CHOP for help finding a nearby hotel, and to find out how long my appointments would be so that we could plan the trip home. She made the reservation for me and printed out maps and looked into transportation options for getting from the hotel to the hospital and from the hospital back to the train station. And then we heard from the doctor’s office that, actually, I didn’t have to be at the hospital early, because they wouldn’t know which tests I’d need ahead of time. My only appointment would be at 10:30 AM with the doctor, so we re-planned the trip for a single day, starting at 5:30 in the morning, and cancelled the hotel reservation.
I ordered the Amtrak tickets and studied the schedule for the Long Island Railroad, and wrote up a packing list, and put all of my papers together in one folder. I was still worried that I’d miss something the doctor said, or miss a train, or just get lost wandering through a strange city, but even more than that, I was afraid that nothing would come of this doctor visit, like all the others, and the resulting hopelessness, on top of the exhaustion of the trip, would wipe me out. But I was determined to go anyway.
And then, the Monday afternoon before my Wednesday appointment in Philadelphia, I got a call from the hospital saying that the original doctor had to cancel, but the replacement doctor could do a virtual appointment that same morning. A virtual appointment? As in, I wouldn’t have to go to Philadelphia at all?!
“Yay!”
The woman I spoke to on the phone couldn’t explain why I was suddenly allowed to have a virtual appointment, when they’d told me two or three months earlier that it would be impossible, but I agreed to the change immediately. I couldn’t think it all through at that moment, though, because I had an appointment with the oral surgeon in an hour.
But after I got back from the oral surgeon, with thoughts of general anesthesia and swelling and bruising and 3D printed teeth swirling in my head, I started to worry that maybe CHOP had changed my appointment to a virtual one because they’d decided that I didn’t have a mitochondrial disorder, and therefore there was no point in seeing me in person.
I spent the next day canceling train tickets and looking into possible refunds (nada) and starting to finally feel the relief at not having to get on four, or was it five, or six, different trains in one day. And then I got the email with the link to my virtual doctor visit and did all of the pre-visit check-ins and I finally realized that Mom would be able to be there for my appointment after all, and so would Cricket and Ellie, and a lot of the anxiety that had built up over months finally started to dissipate.
At 9:30 Wednesday morning, I logged on, with Mom and Ellie sitting next to me and Cricket grumbling from her bed on the floor. First, I met the program director, and she was very nice and took some more family history and explained my genetic test results in more detail, saying that I had a rare mutation, as in, no one else in the database had the same mutation on that particular gene (though the database is far from complete). And then she told me about the tests they wanted to do (which I could do at home and send in), and she asked Mom if she’d be willing to get tested as well, to give them a more detailed sense of my genetic background. And then the doctor joined the visit. He did an abbreviated physical through the screen (look left and right, turn your head left and right, show your hands, back and front, and walk to and from the computer), and then he told me that it’s unlikely that I have a mitochondrial disorder, though an LMNA disorder would be an interesting possibility. But do the tests anyway, just in case.
I wasn’t surprised, though Mom and my therapist were both surprised and disappointed, having spent months telling me that this would finally be the breakthrough. For me, it was just one more doctor visit that ended with a ho hum instead of an answer, but at least I got to stay at home, in the air-conditioning, with Mom and the dogs. And it saved Cricket the trouble of having to spend the whole day worrying that I’d been captured by space aliens or enslaved by fire-breathing dragons, or whatever it is she worries about when her people are away. We were also able to celebrate her fifteenth birthday as a family and watch her eat all of her birthday hamburgers until she was well and truly satisfied (don’t worry, Ellie didn’t go hungry either).
Cricket and Ellie are my shining reminders that life can always get better, even when your body isn’t working the way you want it to, or your hair is something of a mess. They know that life will always be full of things that are worth looking forward to. Though not always hamburgers in particular.
“Why not?”
If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.
Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?
Sometime in the midst of prepping for Mom’s hip surgery, Duolingo announced that I was in the running for the semifinals, of something. I spend some time every day on Duolingo, practicing my Hebrew and French, learning Spanish or German or Yiddish. I’m sure that part of my language learning adventure has been about wanting to feel smart and impressive, but first and foremost I’m fascinated by what languages can teach us about who we are and how we understand ourselves. I don’t practice each language every day, some days I do a little of a few different languages, some days I do a deep dive into one of the languages, sometimes I just do enough to keep my streak alive for another day.
But then there was this tournament. It wasn’t hard to get into the semifinals: I just had to do the same number of lessons I usually do every day. And even getting into the finals didn’t take much extra effort. But once I was in the finals I started to feel pressure to spend hours each day earning points, by studying old lessons and learning new ones. By then, Mom was home from the hospital, and struggling. I was basically on call 24/7 to make sure she took the right medications, at the right times, and had enough to drink and food, if she could stand to eat, and I was also taking care of the dogs and the apartment and the laundry and the shopping.
“But we’re so easy!”
And, at first, the extra time spent on Duolingo was a relief, a chance to think about something other than life and death and pain and all of the ways I was failing my mom, and all of the ways I was failing in life overall. I won eighty points with one lesson – I must be a genius!!! But as the week of the finals went on, and the pressure grew, I was on my cellphone so much that it kept running out of power. I usually don’t notice how much battery is left on my phone, I just put it on its charger when I go to sleep and it takes care of itself, but now it needed to be charged multiple times a day. I was doing Yiddish lessons in between trips to the laundry room, and Spanish lessons while the tea was steeping, and French and German when I had free time and would normally be trying to write, or read. Every time I saw my name fall down to, say, twentieth place, when only the top fifteen would win, I felt like a failure. I had to push harder, do more, and win! I didn’t even know what I might win if I made it into the top fifteen, but it said that the top fifteen would be winners and I wanted to be a winner!
“I’m already a winner.”
The dogs handled the early days of Mom’s recovery really well, thank God. Ellie was her usual sweet self, sleeping on the floor of Mom’s room, sending good vibes throughout the day and night, and knowing to come to me for food or trips and let Mom rest. Even Cricket did better than I had expected. She (mostly) listened when she was told to stay off Mom’s lap, or away from her feet when she was walking slowly down the hall. There was one bad night, though, when she didn’t listen. I found out in the morning that, using her good leg, Mom had kicked Cricket off the bed, and Cricket flew across the room, losing her tags halfway across the floor (I reattached the tags the next morning, pressing extra hard with the plyers so that at least if she went flying again she’d still have her identification on her).
“Harrumph.”
By the weekend of the Duolingo finals, Mom was starting to feel better, not needing me to be on call as much, and my obsession with my placement in the Duolingo rankings became constant. By midday, Sunday, I was in 16th place, one spot away from the winner’s circle, but the whole thing was becoming tedious and I was starting to hate learning languages, which is not like me at all. The only time I could get any perspective was when my phone ran out of power and I was forced to take a break while it was on its charger. I was still able to walk the dogs, and clean, and cook, and make tea when necessary, so there were a few minutes here and there when I wasn’t on my phone, trying desperately to keep up, but not many.
By early evening I had made it into thirteenth place and I thought it was safe to take a break to make dinner, and eat dinner, since the competition would be ending at 11 PM. But when I looked at the rankings again, an hour later, I was back down in sixteenth place. I sat with Mom in the living room, supposedly watching TV, but really trying to earn enough points to get back into the winner’s circle. It was about 10:40 PM and I was still about one hundred points from fifteenth place – winner! – when the battery ran out and my phone shut off. I had seen the warnings that I was low on power, twenty percent left, ten percent left, but I was too busy to stop and charge it, and I was sure I had enough to make it through the end of the tournament, and I was wrong.
At 10:40 PM, I knew that even if my phone charged quickly, I’d still be too far behind to make up the points by 11. Each point I earned would be matched, at least, by the guy in fifteenth place, and he would always be at least a hundred points ahead of me. I wasn’t sure if the people ahead of me in the rankings had more free time, more competitive spirit, better strategy, or if they just had Duolingo Plus, the paid version, which makes it much easier to earn a lot of points at once, but I knew I was out.
So, I finally let go. I put my phone on its charger, and took the dogs out for their last walk of the day, and brushed my teeth, and tried to accept defeat. Some small part of me felt guilty for giving up, telling me I could have switched over to the Duolingo site on my computer and at least tried to earn the last one hundred, two hundred, three hundred points, however unlikely success might be. But I didn’t do that. I just made my overnight oats for breakfast, took my evening meds, and watched the clock as the last few minutes ran out on the Duolingo tournament.
I was already planning this essay by then – because the extremeness of my behavior around this meaningless tournament worried and intrigued me. I could stand back, finally, and wonder if I was specifically vulnerable to this obsession because of the helplessness of watching Mom struggle to recover from her surgery. Or if maybe there’s something in my brain in general that can’t tell the difference between what’s important and what isn’t important, and I truly believed that winning this tournament could change my life in some significant way.
Mom had a much better way of distracting herself. For Mother’s Day, before the surgery, when I was searching through Amazon for something Mom might like, I found a butterfly kit. I’d never heard of such a thing, but Mom loved the idea, and then spent half a day looking for the right one (not the one I’d found), and it arrived a few days before the surgery. She set it up in her room, and read diligently through the instructions for how to take care of the caterpillars, and their habitat. Luckily, there wasn’t anything I needed to do for them while Mom was in the hospital, because I was too busy cooking and cleaning and freaking out, to have made sense of more instructions.
And when Mom came home and was dealing with all of the pain and discomfort of recovery, she watched the caterpillars creating their chrysalises, and she fed them and cared for them, and when the butterflies started to emerge, Mom was starting to feel better, and by the time Mom was ready to start walking outside with the physical therapist, it was time to hang the butterfly habitat outside on a tree, and open the zipper, and let the new butterflies find their way out into the world.
The metaphor of the whole thing really resonated, for both of us (though Mom was disappointed that the butterflies flew away so quickly after their transformation). The presence of these creatures, transforming in her room, gave her something hopeful to look at every day. Even if she never intended the butterflies to be such a clear metaphor, some unconscious part of her brain knew what she would need and sought it out.
And, for whatever reason, my mind sought out the Sisyphean task of trying to win a Duolingo tournament I could never win.
There was such relief when the tournament was finally over, even though I’d ended up right outside of the winner’s circle in sixteenth place. I was able to look away from my phone again and realize that Mom really was feeling better, and moving better, and ready to make her own tea again, the way she actually liked it. And I was finally able to go back to my other obsession: watching endless episodes of Murder, She Wrote, and basking in Jessica Fletcher’s ability to decipher clues and solve murders and believe in herself despite constant criticism. In a way, Jessica Fletcher is the butterfly version of my caterpillar self, and watching her gives me hope that someday I might come out of my chrysalis and really be able to fly.
At the same time, Cricket started to realize that her Grandma wasn’t in as much danger anymore, and decided to resume her regular habits: including her insistence on sitting on her Grandma’s lap and barking her demands as persistently and loudly as possible. She made it clear, in her own way, that there was more to life than winning a Duolingo tournament, or even watching episodes of Murder, She Wrote, and it would require me to get up and take her and her sister outside to look for the butterflies.
If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.
Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?
rachelmankowitz 