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?
Lately I’ve been living at the dentist’s office, or the oral surgeon’s, depending on the week. First there were regular checkups to see how I was healing from this summer’s oral surgery, and then at about the three month mark a crack appeared in the temporary upper teeth, not visible on the outside, and, luckily, the oral surgeon had been testing out his own 3D printer this fall and made a second version of my temporary device, so it was available to be switched out for the cracked one. And after that, I had to start the process of going from a temporary implant to a permanent one, which means molds and try-ons and who knows what else.
But in the meantime, I also had regular cleanings, and more extractions, because my bottom teeth were jealous of all of the attention the upper teeth had gotten, and I had to get a temporary tooth, called a flipper, to fill the empty space up front, so now I have to be even more careful about what I eat, so I don’t accidentally pull out the flipper and swallow it with my dinner.
“That doesn’t sound yummy at all.”
I wish this was all as entertaining in real life as it looks on paper.
The bone and gum loss in my mouth is so premature and seems to be a big honking clue that there is some underlying systematic disease process at work in my body, but no one can explain it or tie it to a specific diagnosis. So I continue to lose my teeth, and I continue to get more and more exhausted, and nothing I try seems to be able to slow this process down, let alone reverse the damage already done.
I’ve also had to go for blood tests, and a mammogram, and a gynecological checkup, and there’s the oral pathologist and the primary care doctor and the gastroenterologist coming up, and, of course, the continuing dental visits.
And I’m tired. I’m tired of having to spend money on my teeth, and on tests and supplements, and I’m tired of having to spend so much energy and time going to doctors and researching potential diseases and treatments, without success.
My nutritionist mentioned that someone she knows, with similar autoimmune issues to mine, had some success with Low Dose Naltrexone (the regular dose, which is prescribed to interrupt opioid addiction, is covered by insurance, but the low dose is an off label use and therefore only available at a compounding pharmacy, and therefore not covered), so now I’m doing research online and asking my various doctors what they know about that. But I’m worried that either the doctors won’t prescribe it, or that they will and then I’ll spend more money and time on yet another possible solution and get no improvement.
And in the meantime, my micro-part-time job is getting harder to manage, and when, on top of that, an emergency comes up: like the smell of gas in the building (leading nine members of the fire department to stomp into my apartment, silencing even Cricket, and then they turned off the gas for the whole building, for two weeks, while they checked the connections in every apartment), or the toilet leaking into the apartment below us (leading to a new wax ring and therefore a new toilet and new tiling because our toilet had been set in place with concrete, for some reason), the resulting invasion of workmen makes life even harder.
“Oy.”
But, Mom has been doing better, and has had a string of good luck with new doctors who seem to know what they’re doing and care what she has to say. And the dogs both passed their yearly checkups with flying colors, and Ellie survived yet another dental cleaning and now has fresh clean breath, and I still love my work, and have tons of good things to watch on TV, and good books to read, and good food to eat…
And I feel like I should be celebrating all of this good fortune, but I don’t have the energy. So I keep trying new probiotics, in case the gut microbiome is the source of all disease (as Facebook keeps telling me), and I keep trying new breathing exercises and yoga poses and guided meditations, in case a calm mind really is a healthy mind (again, Facebook), and I hug the puppies, and I take my naps, and I read my mysteries. Because what else can I do?
“Bark. At everyone.”
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?
After Mom’s emergency second hip surgery, to revise the hip replacement that was put in two months earlier, my oral surgery was rescheduled to late August. I already had my medical clearances in place, and all of the medications I’d need for before and after the surgery, and the oral surgeon had already given me a rundown of what to expect after surgery: like, bleeding from the nose, swelling of the sinuses, bruising on my face, and a possible lisp because the temporary (3D printed) implant would leave a small space between the device and my gums. Oh, and I wouldn’t be allowed to blow my nose, or accidentally sneeze, for three weeks, because that would make the swelling worse.
“I know how to avoid sneezing.”
My biggest fear leading up to the surgery itself, though, was the anesthesia. The surgeon had told me that they wouldn’t decide until the day of the surgery whether I’d be getting sedation or general anesthesia. He was voting for general anesthesia, because it would make his life easier, but I thought sedation might mean I could avoid having a foreign object shoved down my throat, so I was hoping for sedation. When I finally spoke to the anesthesiologist, a few days before the surgery, she told me that I’d have a tube down my throat either way, to protect my airway, and that general anesthesia would be better for the surgeon and easier on my throat. And I’d be unconscious when she put the tube in and took it out, so that might mitigate my fear of choking. I hoped she was right.
Then she asked me, with no warning, if I had access to an adult undergarment, i.e. depends, because if not they could supply one for me when I got there. What?! She said that I might pee under anesthesia and everyone would prefer it, including me and the staff, if I didn’t leave a puddle.
Eek!
First of all, no, I don’t have adult undergarments hanging around on a shelf – except for Cricket’s adorable pink reusable diaper from her incontinence episode, which would just about fit over my hand. Second, how did no one think to mention this to me ahead of time? Or maybe they kept it quiet because they thought this would be the deal breaker. As it is, the adult undergarment became my number one preoccupation for the whole weekend leading up to the surgery – who cares about pain! What if I pee on myself?!
When I met the anesthesiologist in person, she was lovely and friendly and way too energetic for someone who was about to put me to sleep. She gave me the adult undergarment to change into in the bathroom, under my loose clothing (aka pajamas), and then I was whisked into the surgical suite, where my legs were wrapped in anti-blood clot sleeves, and monitors were attached to my fingers, and my hair was covered with a surgical bonnet so it wouldn’t get sticky (?!), and then a needle was put into the back of my hand, and then I have no idea.
I woke up in the same room, with the same people removing the things they’d attached just seconds before (though I found out later that five hours had passed). Most of my thoughts when I first woke up, strangely enough, were in Hebrew. Where’s Mom? What happened? When can I go home? I couldn’t actually speak yet, because my mouth was filled with gauze, and my throat was rough, and I had ice packs wrapped around my face, but I found myself translating everything into English anyway, as if they could hear me and answer me. The closest I came to being able to communicate was a grunt or two and a thumbs up or down, though as I was leaving in my wheelchair the surgeon decided to give me a fist bump.
I don’t really remember the trip home, except that Mom brought out her rarely-used walker and our neighbor, the nurse, to help me walk from the car up to the apartment. I spent the rest of the evening in front of the TV, changing out the bloody gauze until my mouth stopped bleeding (mostly), and going to the bathroom every twenty minutes (I couldn’t find an explanation for the excess peeing online, especially since I could barely sip enough water to take my pain meds, but it receded along with the excess bleeding).
I didn’t sleep much that first night, because my nose kept running – the surgeon said it was fluid from my sinuses, and blood, rather than traditional snot, but either way it made it hard to breathe – and I had to refreeze the ice packs for my face constantly, and my mouth hurt, and every time I moved my head it all hurt even more. I was able to take the dogs out the next morning, though, wearing a loose face mask to try and cover my swollen cheeks, but I managed to forget my house keys and had to ring the doorbell for Mom to let us back in anyway.
The pain was so much worse than I’d been expecting, so I had to give in and take some of the oxycodone I’d been prescribed, but mostly I survived on ibuprofen and ice and the coziness of my puppy pile.
To make things worse, it turned out that my Mom, who had been having trouble breathing over the weekend and assumed at first that it was just an allergy thing, went to the doctor on my first day post-surgery and started treatment for a possible case of Pneumonia. The next day she went for a chest x-ray, which ruled out pneumonia, which meant that on my second full day post-surgery I was driving Mom to the emergency room so they could rule out a blood clot. She stayed in the hospital overnight, getting all kinds of tests, and was told that she had fluid in the right lobe of her lungs and some kind of hardening of the lung tissue, which would be investigated further with a Bronchoscopy (under general anesthesia, a week later, just to keep things fun).
The next day, while Mom was still finishing up her tests at the hospital, I drove myself back to the surgeon’s office to have my temporary implant put in. By then my cheeks were starting to deflate and had turned all sorts of interesting colors, but my face mask allowed me to feel largely invisible, until I had to take it off to be examined by various assistants. There was a lot of sitting and waiting, between examinations, and then the surgeon screwed in the temporary implant, using what seemed to me like a tiny Allen wrench. He made sure to tell me not to swallow anything during the procedure, which was helpful, because when he was finished screwing everything in place there was still one tiny screw sitting on my tongue.
When I got home, I wrapped my face in ice again (they gave me a cool little headband that wraps around my head, with pockets for the ice packs, which was much more comfortable than holding ice packs on my face with both hands), and I watched the recording of my online Hebrew class a day late, so jealous of everyone on the screen. Mom came home with updates on her hospital stay and then it was nap time, for everyone, puppies especially.
“Sorry, Mommy. No room for you.”
Each day the pain and swelling has receded a bit more, and I’ve started to figure out how to chew with my new teeth, and how to deal with the temporary lisp (ignore it). The freezer is filled with bought and homemade soft foods, like soups and casseroles, and, of course ice cream, so there’s a lot to look forward to. And when the permanent implant comes, in a few months, it’s supposed to fit better than the temporary one (eliminating the lisping issue), and be made of stronger material (to allow me to eat more than just soft food), so if I can make it through the next few months with some self-esteem left, I should be okay long term.
And pretty soon, I’ll be back in front of the classroom, with no time to worry about how weird I look or sound, because the kids will have so many more important things to focus on, like: He pulled my hair! She stole my favorite pencil! Can I go to the bathroom, even though I just went five minutes ago and I’m definitely not looking for an excuse to wander around the building, please?!
Wish me luck!
“Are you going away again?!
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?
In the midst of a lot of drama this summer (doctor visits and surgery and jury duty, oh my!), I’ve been keeping my eye on the paw paw tree for a sense of hope and stability. And it’s been working. We have eight or nine paw paw fruit on our tree, some in pairs but mostly singles, and every week they grow a little bigger as if they’re being inflated by a bicycle pump when I’m not looking.
I don’t visit the tree each time I walk the dogs, because I follow the shade wherever I can find it and sometimes the tree is in full sun (good for the tree, bad for me, and my heat intolerance and tendency to sun poisoning), but I check on it at least once a day, and carefully duck under branches and around paw paw leaves to look at the growing fruit.
It helps to have a calm, gradual, positive thing in my life, while I have to do a lot of things that are (way) out of my comfort zone. The paw paw tree has been that reassuring thing this summer – that, and the dogs: Ellie’s sweet, loving face when she cuddles up next to me and asks for head scratchies, and Cricket’s great joy when she sees Kevin, the mini Golden Doodle, coming her way. The good things don’t make the bad things (the news) or the scary things (surgeries) go away, but they give me the strength to keep going, and I feel so lucky for that.
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?
At my most recent visit with the dentist, about a month ago, I finally asked her about the oral surgeon’s recommendation that I get a full implant to replace my upper teeth – with screws in my cheek bones to stabilize it – and the dentist said it was the best option for me, despite the cost. She said that I will lose more teeth, more rapidly, in the near future, because of the progression of gum recession and bone loss. She was definite, and the hygienist, who I’ve been going to for about twenty years (she worked with my previous dentist too), agreed with the dentist’s assessment, and said that I’d be in good hands with this particular oral surgeon. My mother had also done her research, with friends in the dental field and of course on Google, and she felt that this was the right plan too. And, Mom said, as a result of my father’s death last fall she would be getting a larger social security check from now on, so, in a way, my father would be helping to pay for it.
I was still scared, though, of the cost of the procedure and the radical nature of it; but I was more scared of not doing it, or of not doing it in time, and losing more teeth without having something to replace them.
As soon as we called the oral surgeon to say yes, the process started to move forward at high speed. The office manager at the oral surgeon’s office had to do a credit check to see if I qualified for a loan, and then I needed to go into the office to sign the loan papers, and get x-rays and a lot of pictures of my smile, and intra-oral pictures to cover every centimeter of my mouth, so that the surgery could be planned out and the temporary and permanent implants designed. The doctor’s assistant, who did all of the pictures, some even with her cell phone while I used the retractors to hold my mouth open, also gave me a rundown of what to expect after the surgery: a lot of pain (with a prescription for Percocet, just in case), and bruising on my face for ten days to two weeks, and oh yeah, it might be difficult to get used to eating and talking with the temporary implant (the permanent one would come in three months and be made of less bulky and more long-lasting materials), and I’d have to be on a soft food diet for the whole three months to protect the temporary implant, and probably not eat much at all for the first few days while my gums healed, before they could even put the temporary implant in place.
I went home with a gift bag (a Water Pik, signed loan papers, cough drops, and colorful plumes of paper), and a lot of fear. I knew I had to follow through with this, not just because of the loan papers, but because this would be my best option to feel like a viable person in the future, but I had a lot of nightmares: teeth being pulled out of my mouth with rusty plyers, monsters shoving things down my throat while I’m under anesthesia, etc.
“Monsters?”
A day or two later, I got an email from the Anesthesiologist’s office telling me what I’d need to do for medical clearance before the surgery: I’d need an EKG and blood tests and an overall exam from my primary care doctor, and an okay from a pulmonologist. But my primary care doctor didn’t have any appointments available until the week after the surgery, and it took a while before one of the schedulers at her office offered to let me see the nurse practitioner there who had an opening. And then I called the office of a pulmonologist I’d seen five or six years ago, for shortness of breath, and his scheduler said he didn’t have appointments available until October.
So, back to the primary care doctor’s office for a referral to another pulmonologist, and, wonder of wonders they had a name ready and he had an appointment available within an hour. And he was lovely. He read through my test results from five years ago, and checked my breathing, and took a short history, and gave me his okay for surgery. He told me that he’d had a similar situation where he’d needed pulmonary clearance for surgery, and they wouldn’t take his own medical word for it, so he’d gone to the pulmonologist I’d seen before (the one with no appointments until October) to get his clearance done.
After that, I was finally able to take a deep breath. It seemed like things were going to be okay, and there were even nice people in the world who understood what I was going through, and then I got home and found a jury summons in the mail, for the week of the surgery.
Really God? Really?!
I had to email the jury commissioner’s office directly because the only postponement options offered online were for during the school year, and luckily they were able to give me a new date in August (by which time my bruises would, hopefully, be less visible).
At the same time, I was preparing for the trip to the hospital in Philadelphia (which turned out to be a virtual visit at the last minute, thank God), and worrying about whether or not to take the next semester of my online Hebrew class over the summer, knowing I’d have to miss a couple of class sessions, and possibly stay off camera for a few others, what with bruises on my face and lispy, awkward speech. But the idea of not having those classes, and only having the pain to look forward to, seemed too awful, so I stuck with it. And then I needed to go for a Covid test and pick up the meds from CVS that I was supposed to start three days before the surgery, and…
And then Mom’s hip replacement popped out. Her hip had been sore for a few days, but the doctor wasn’t worried and just recommended more rest. But when I came in from walking the dog’s Saturday morning Mom said, “I have some bad news,” or something equally as understated, and she told me she could feel something protruding under the skin and she was ready to throw up from the pain. I raced around looking for the doctor’s phone number, which was probably in plain sight somewhere, and eventually found it online, and the doctor said to call for an ambulance and go to the emergency room. The dogs barked up a storm from behind my bedroom door when the paramedics arrived, but Mom was really calm and just needed some help getting her shoes on before they guided her down the stairs in a wheelchair and out to the ambulance.
“Why can’t we go with Grandma?”
The ER was crowded with Covid patients, so I wasn’t allowed to go in and had to wait for news at home. And I still wasn’t allowed to go in later in the day, after they’d decided to transfer her to the hospital in the city where she’d had the original surgery, so I had to drop off her clothes and phone charger with a very nice security guard, without seeing her at all. And then I went home and called the oral surgeon’s office and left a message (it was the weekend) telling him that I would have to postpone the surgery, which was supposed to have taken place that Thursday. And then I had to sit and wait.
Up until that moment I’d felt like I was on a speeding train with all of the doctors’ appointments and the upcoming oral surgery and jury duty and then getting Mom to the emergency room and bringing her clothes. And then the world just stopped, and all I could do was sit by the phone.
“I’ll sit with you, Mommy.”
But Mom’s second surgery finally took place mid-week, and it went well, though the surgeon sounded more humble on the phone this time around, explaining exactly what he’d done to make the hip replacement more stable. And then I heard from the oral surgeon’s office manager that my new surgery date wouldn’t be until late in August, dangerously close to the beginning of the synagogue school year (though I’m hopeful that with the latest Covid sub-variant going around, I will be able to wear a mask in the classroom and not feel too self-conscious).
Now that Mom’s home, and safe, I should be feeling better, but I’m afraid of what will happen when the world starts moving again and I have to rush to the drug store, or see doctors, or go to jury duty, or prepare for my own surgery, or go back to teaching in the fall. I feel like a stopped clock that has to be reset, and my arms will flail out of control as I start to speed forward through the hours again. But for now, there’s a calm in our house, as Cricket climbs back up onto her grandma’s bed, and even lets Ellie sit nearby (though not for long); we can all breathe a sigh of relief, knowing we are home, together, where we belong.
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?
About two months ago I went to see an oral surgeon, sent by my regular dentist, to see what my options might be in treating my Lichen Planus (an autoimmune disorder that impacts the tissues of my mouth, causing gum recession and bone loss and resulting in loose teeth). I had expected my old dentist to have a plan to help me, because he’d said he had one, but then he retired, without telling me his plan, and his replacement suddenly wanted me to go to an outside expert for advice, without saying what that advice might be.
I had no idea what to expect at the appointment, but my new dentist had praised the oral surgeon for his ability to deal with autoimmune patients like me, and she seemed to believe that he’d have better treatment options than what she could think of herself, or what my previous dentist had left behind in his notes. She made it sound like there could be a way to slow the tooth loss, and to treat the Lichen Planus more effectively than the oral pathologist had been able to manage for years now.
“Who me, skeptical?”
So when I walked into the oral surgeon’s exam room, after a full x-ray of my mouth, and he immediately began his spiel about how he would remove all of my upper teeth and replace them with an implant that would be anchored into my cheek bones, because I don’t have enough bone for regular implants, and he doesn’t think bone grafts are stable enough, and a partial implant would be a waste of time and money, and the whole thing would cost $40,000, and none of it would be covered by my health insurance.
I had no idea what to say, or do. I couldn’t talk to anyone in the aftermath. Even talking to my Mom just turned into hysterical crying. Mom called the dentist for an explanation of what the oral surgeon was proposing, and the dentist said that my situation was much worse than my now retired, dentist had told me, though he had noted it down in my chart. The dentist said that she would consult with the oral surgeon, and with the oral pathologist, and get back to me with an explanation of the options available.
She didn’t call back though, and I didn’t have the courage to call her myself. I didn’t want to be on the phone with a relative stranger, crying and feeling helpless and inarticulate, especially when I couldn’t even figure out why it was all so overwhelming. I just couldn’t think at all.
“I know the feeling.”
My therapist wasn’t really concerned. She said I should just get a denture instead, because it would cost less and be just as good. I was wearing my face mask at the time so she couldn’t see the look of horror on my face at the idea of dentures. She also expected me to be able to call the dentist and talk through the options, even though I kept trying to tell her that I couldn’t do it; that I couldn’t even pick up the phone, let alone dial the phone number or, god forbid, talk.
But then Mom got the news that she’d have to have hip surgery (first on one hip and then, three months or so later, on the other), and I found out about two possible diagnoses that might explain my various medical issues, and I got distracted with going for more tests and making appointments with new doctors, and Mom and my therapist got excited about the possibility of my finally getting a diagnosis, and the whole question of my teeth was forgotten. Except that I kept looking in the mirror at the two precariously loose teeth, close to the front of my mouth, that could become infected or even fall out at any time, leaving me feeling like a hobo, unable to go out in public or show my face on Zoom, and with no plan for what to do.
“I make missing teeth look cute.”
I wrote down my questions for the dentist, and a long list of questions for myself about why I was getting so stuck, but then I put my notebook aside, because not only couldn’t I think of any answers, I couldn’t even stand to look at the questions.
But now I’m getting closer to my next regularly scheduled appointment with the dentist, and I know I need to prepare myself, but it’s still too freaking hard.
I know that the money issue overwhelms me. I feel selfish even considering this zygomatic (cheek bone-anchored) implant, which would require a student loan-sized debt, on top of my existing debt, instead of accepting the idea of a denture. I don’t even know if there is a way to borrow the money for such a thing.
And I’m angry that this is happening, given how much effort I’ve put into taking care of my teeth, and how much effort I’ve put into trying to deal with the medical issues that caused all of this, and I am angry that my health insurance doesn’t cover dental issues even when they are directly caused by medical issues. And I am so angry that my previous dentist, who was my dentist for more than twenty years, didn’t prepare me for this in some way; didn’t even tell me to put money aside, just in case. He just kept telling me to trust him, that he’d take care of things, and that we’d make a plan when the time came. But when he announced his upcoming retirement, and I asked him about that plan, he didn’t make time for me, just sent me on to his replacement.
And I’m angry that basics like dental care, hearing aids, and even glasses, aren’t covered by health insurance. They’ll cover the eye exam, but not the glasses that are prescribed. They’ll cover the audiologist, but not the hearing aids. And they’ll pay for my visits to the oral pathologist to treat the Lichen Planus, but they won’t cover the damage the Lichen Planus does to my teeth, or more accurately, to my gums and bone, which hold my teeth in place.
I’m afraid of how a denture or an implant will change the way I look, or eat, or talk, or sing. And I’m afraid of being in even more debt. I’ve already paid off two masters’ degrees in writing, and I’m about halfway through paying for my third, very expensive, master’s degree in social work. And I’m afraid of losing the two loosest teeth, the ones that are visible in the front of my mouth, before I figure out what to do.
I don’t know how to make a decision while I’m still feeling too humiliated to even ask the dentist the most basic questions.
I guess the humiliation is at the core of all of this, as usual. But knowing that doesn’t change how overwhelming it feels. I feel guilty and worthless and small and unimportant, again and again. But it’s possible that being able to write all of this down is a sign that I’m getting somewhere. I hope.
“I believe in you, 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?
About a year ago I had to go to a Gastroenterologist, both because I was experiencing belly pain and nausea (still am) and because my Cardiologist was impatient for me to schedule my first colonoscopy. The gastro took my concerns seriously and when he saw a note in my chart from a Rheumatologist saying that I have a clinical diagnosis of Ehler’s Danlos (a connective tissue disorder), he referred me to a geneticist to see what type of Ehler’s Danlos I have, because certain types can make a colonoscopy dangerous, and he didn’t want to take any unnecessary risks.
It took a while to get an appointment with the geneticist, and then it took a while for the first set of results to come back, which were inconclusive, and then it took a lot longer for a more comprehensive set of tests to be performed.
“That sounds exhausting.”
I finally heard from the geneticist in March, and she said that there were a few genetic mutations (see, I AM a mutant!). Most of my genetic test results came back as “variant of uncertain significance,” because they’ve recognized mutations on certain genes (related to Connective Tissue disorders and mitochondrial disorders, in my case) but are not yet sure what those mutations signify. There was also a “likely pathogenic variant” on the LMNA gene, something I’d never heard of and had to google extensively. The geneticist referred me to a neuromuscular specialist to look into a possible LMNA-related disorder, and sent me for more tests see if I might have a mitochondrial disorder, based on the variants of uncertain significance, and it turned out that there was something there, so she also referred me to a hospital that specializes in mitochondrial disorders.
I am not used to doctors taking me seriously, or even taking my test results seriously, so I haven’t quite taken in the idea that there might be a name for what I have, and doctors who are willing to try and treat it. I’m still worried that this will be another dead end and I’ll be back on the doctor roller coaster by the fall, with no validation and no treatments to show for it.
The LMNA thing is still mostly a mystery to me (my brother, the doctor, had never heard of it), but the research I’ve read says that pathogenic variants on the LMNA gene can cause diseases like: muscular dystrophies, dilated cardiomyopathy, premature aging disorders, and a bunch of other diseases I’ve never heard of. There could be a connection between the LMNA variant I have and the scoliosis that runs in my family (on my mother’s side). There could also be a connection between some of my muscle weakness and walking problems and heart murmur and all of this, but the research I was able to find was mostly about much more serious disorders related to the LMNA gene variants and didn’t sound, overall, like what I’ve been experiencing all these years.
My research on mitochondrial disorders came a lot closer to fitting my situation, though, with a list of possible symptoms like: exercise intolerance, muscle weakness, shortness of breath, and severe exhaustion. Type 2 Diabetes can also be a symptom of a mitochondrial disorder, and that runs on my father’s side of the family, and has always been a concern for me.
Mitochondrial disorders cause cells to have trouble metabolizing proteins, so the body doesn’t get adequate oxygen or energy, and instead produces lactic acid and other organic acids that can be toxic to the body. If I do have this, I have a mild version (compared to children who show signs in infancy), which would explain why it’s been hard to diagnose.
The hospital that specializes in mitochondrial disorders has already requested a lot of my previous medical records, including MRI’s and spinal tap results. I’m not sure what else they will need in order to determine a diagnosis, but the articles I’ve read have mentioned muscle biopsies as likely next steps, and they may also want me to redo scans, or even, god forbid, redo the spinal tap which sent me to the hospital last time around.
Miss Butterfly held my sock ransom until I came home
It makes sense that mitochondrial disorders are hard to diagnose, because symptoms can range from mild to severe, involve one or more organs, and can occur at any age. Symptoms can include: poor growth; muscle weakness or pain, low muscle tone, and exercise intolerance; vision or hearing problems; learning disabilities or developmental disabilities; autism spectrum disorder; heart, liver or kidney disease; gastrointestinal disorders, swallowing difficulties, diarrhea or constipation, vomiting, cramping or reflux; diabetes; increased risk of infection; neurological problems (seizures, migraines, strokes); movement disorders; thyroid problems; respiratory problems; lactic acidosis; and dementia.
There’s also no known cure for these disorders, just experimental treatments to help reduce symptoms, including vitamins and supplements like: Coenzyme Q10, B complex vitamins, Alphalipoic acid, L-carnitine, Creatine, L-arginine; and exercise, rest and physical therapy. They also say to avoid alcohol (check), cigarettes (check), extreme temperatures (I try), lack of sleep (hmm), Stress (hmm) and MSG (which could explain why I have developed a bad reaction to the Chinese food I used to love.)
“I’ll eat your Chinese food for you.”
So it looks like I will be spending the summer being examined again, with who knows what potential results. The geneticist also made sure to give me an appointment for next year, in case none of these diagnoses pan out. She said that the genetics field is discovering new things every day, with more sensitive tests coming soon, and more research on how gene mutations influence different diseases. So I will probably see her once a year until they are able to figure out what’s going on with me and how to treat it.
Wish me luck!
“Good luck, 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?
My father created chaos in our house when I was little, intentionally and unintentionally, because it worked for him, but living in his house made me feel like the floor was going to drop out from underneath me at any moment. He resented closed doors, even though he wanted to keep his own door closed; and he used all of the bathrooms in the house, even when he could easily get to his own private bathroom in time, almost like a male dog marking his territory. He set the rules, and often broke them, and then yelled at us for breaking rules he’d never told us about. All of that has left me handicapped when I try to figure out what “normal” boundaries should be, and when I have the right to enforce them.
“I always enforce my boundaries. Preferably with my teeth!”
And when I realized, recently, how hard (impossible!) it was for me to set boundaries with my doctors, and limit the damage they could do with their comments about my weight and their minimization of my symptoms, I decided that I needed to do some more basic research on boundaries, and figure out what the hell they are.
First and foremost, when I think of the word “boundaries,” I think of something like a fence or a wall, something solid and visible, but interpersonal boundaries aren’t supposed to be either. I think they’re supposed to be more like the semi-permeable cell membranes we learned about in High School Biology class, the ones that allow some molecules in and not others. But those molecules supposedly got through based on their size, rather than something more vague, and the cell walls were visible, at least under a microscope, and interpersonal boundaries just aren’t.
Each article I’ve read seems to have a different idea of how to set interpersonal boundaries, and even what they’re good for. One said that boundaries are a way to set a clear line between what is me and what is not me. For example: my father’s feelings, needs, crimes, etc., are not my responsibility, no matter how many times he told me that they were. Another article focused on how boundaries are a way to determine which behaviors you will accept from other people, and which ones you won’t (though they didn’t explain how to not accept behaviors you don’t like, and the assumption that I can just walk away from a bad situation feels dismissive, of me). The articles also talked about different kinds of boundaries: physical, emotional, material (stuff), time, intellectual (this one was blurry to me), sexual, etc.
My most obvious boundaries are the ones around my body, if only because my internal alarm system is so loud when my physical boundaries are crossed.
“Even I can hear it,”
I remember going to a new doctor when I was nineteen years old, probably transitioning from a pediatrician to my first official grown up doctor, and the nurse came into the exam room before I’d even met the new doctor and told me to take all of my clothes off and put on a paper robe. And I said, well, can I meet the doctor first, because I’m not comfortable taking off my clothes right now. I didn’t think I was being unreasonable at the time, or even setting a boundary, but the nurse got mad at me and brought in someone else from the office to yell at me and tell me I was being obstructive and if I didn’t take off my clothes I would not be allowed to see the doctor. So I jumped off the exam table and walked out. I didn’t choose to set a boundary, I just knew I physically couldn’t take my clothes off. I felt the boundary; though afterwards, of course, I felt guilty for being so immature and uncooperative.
Covid’s social distancing and zoom meetings have been a godsend for me, because finally everyone else’s physical boundaries have had to be more like mine (no touching and at least three feet away, I don’t know anyone who managed the six foot distance), but I’ve also become more aware of how much less personal space other people seem to need or want, and I’m worried about how I will deal with that again once the Covid precautions end.
I’m also a big fan of time boundaries – like the ones created by a forty-five minute session with my therapist, or an hour and a half limit for a class, but I’m not good at setting those time boundaries myself, like for phone calls or conversations that I wish were much shorter than they turn out to be.
“I think the phone should never ring.”
I’ve been told, many times, that my boundaries are too rigid and keep me isolated from other people, but my rigid physical boundaries are there to protect me from my more blurry emotional boundaries: like my inability to recognize what’s my fault and what’s not, or what’s my responsibility and what isn’t, and my fear of telling people to stop hurting me when their weapons are words instead of hands.
It seems like, in order to relax my rigid physical boundaries, I’ll need to learn how to say no to conversations I don’t want to have, and to believe that I have the right to my own feelings and beliefs and opinions even when someone else disagrees with me. But it all feels so uncomfortable. I struggle with navigating the gradual boundary crossings required for building friendships, because each small step closer to another person feels like I’m losing control over my boundaries completely.
I remember when we adopted Butterfly (an eight-year-old Lhasa Apso rescued from a puppy mill after many litters), and her boundaries almost glowed around her. When she was in the cage at the shelter, she was desperate for contact and outgoing, licking me through the bars of her cage, but as soon as she was taken out of the cage she was terrified and unsure where to look or what to do. She healed so much in the almost five years we had with her, but she never became like Cricket, who always needs to be physically attached to, preferably suffocating or pinning down, her people.
Miss Butterfly
Butterfly knew she had a home, and enough to eat, and a lot of love, but she was never quite sure that the people who were being kind to her one day would still be kind to her the day after that, and she seemed to wake up each morning needing to test the air, just to make sure her world hadn’t changed again. And that resonated with me. I still do that, unconsciously but consistently, every day, worrying that my good fortune is about to run out.
Ellie, who came to us from a home breeder, instead of a puppy mill, and was retired from breeding at age four instead of eight, is still unwilling to stand up to Cricket’s boundary crossings and bullying, choosing to walk away rather than fight. And I see myself in her too: the way I can be overly accommodating, at times, because I’m afraid of what will happen if I say no.
“Uh oh!”
It’s interesting, though, that I am comfortable sharing so much of myself in my writing. It’s as if the writing itself acts as my most secure boundary, allowing me the time I need to choose what to share and what to keep to myself. If I could take a time out during a conversation, in real time, and think about what I want to say instead of saying the first thing that comes to mind, I’d feel a lot safer. But I haven’t figured out how to stop time, yet. It’s been a lifelong goal, though, and at this point I have about equal faith in my ability to develop magical powers as to figure out how to set healthy boundaries and enforce them.
“Could we have magical powers 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?
The most recent embarrassing symptom of my autoimmune/connective tissue/who-knows-what disorder was a wound on my lip that refused to heal. Actually two. The first one was on the right side of my lower lip and lasted at least three weeks, and as soon as it healed another one opened up on the left side. I can’t even explain the frustration I felt when, after less than a day with actual normal skin, a new wound opened up.
“You looked really weird, Mommy.”
This would have been fine, though, if every time I was in the view of other human beings I was wearing a face mask, but I teach online once a week, and take a Hebrew class online twice a week, and I was supposed to record another choir video, so it was been an exercise in holding my head at funny angles, rejiggering the lights, and trying not to feel embarrassed when my still bleeding lip, or any of the many different scabbing stages, were visible. Only one of my students mentioned it, and I’m assuming that everyone else was either being polite or not actually paying attention to me (which is more likely).
“Were you saying something?”
The oral pathologist said the lip wounds were probably caused by a combination of the Lichen Planus (an autoimmune disease that impacts the inside of my mouth and also my lower lip for some reason), and the way the face masks keep moisture in, and the steroid gel I have to use to control the Lichen Planus (which barely works, but successfully thins my skin). He wasn’t concerned, though. He was also unconcerned that there was an ulceration on the side of my tongue, and raw red skin on the inside of each cheek, and gum irritation that will lead to more and more problems in the future (his nurse joked that I should save my money for all of the dental work I will need – Ha ha! So funny!), all of which has made eating a painful experience for quite a while now. But other than that, sure, no big deal.
The thing is, if I could just be sanguine about my symptoms and accept them as a passing experience, maybe I’d be okay. But instead, I end up feeling like these symptoms are proof that I am a disgusting and unlovable creature. I feel like a throwback to biblical times, when Miriam (the sister of Moses and Aaron) was punished with a skin disease for being a gossip. I’ve been putting off teaching my synagogue school students about Tzara’at – the skin disease Miriam, and others, were supposedly punished with for their “bad speech,” because I really don’t want to risk them thinking this lip thing is going to happen to them too. And, really, I don’t want to risk convincing myself that there’s something to that argument. I mean, if gossip caused skin disease none of us would have any skin left!
“What?!”
As soon as my lip healed – mostly – I rushed to do my choir recordings before a new wound could open up, and I made it with one day to spare before the deadline (I really did not want to explain why I would need more time). And instead of worrying about my lip, I was able to worry about the glare on my glasses, and the break in my voice when I had to move from the lower notes to the higher notes, and the flyaway hairs escaping from all sides of my ponytail, etc., which was a relief.
I don’t know what my next weird symptom might be, because it’s generally unpredictable, and I’m not so evolved as a human being that I can be blasé about symptoms that impact how I look. But for now, I’m going to make the most of the feeling of freedom that comes from being able to turn my head from side to side while I’m on screen, and eat salty food without fear of excruciating pain, and knowing that if I fall into the depths of despair in the next few days it will be about something other than how I look on Zoom.
“I think I look pretty good.”
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 