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More Doctors

            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?

Walking the Labyrinth

 

A week ago Tuesday, I went for my social work licensing exam at a nondescript office on Long Island. I was anxious about the exam because it covered a lot of ground (three and a half years of classes, plus whatever else a social worker might need to know), and because the style of questioning is meant to be tricky and confusing. But I had spent months studying and preparing, and I generally do well on tests, so I was managing the anxiety okay. And then I reached the office building and had to find a parking spot. The building I was looking for was in a large complex of office buildings, and even though I’ve been in that area before, I’d never been to that particular building before. When I did my practice drive a week earlier there was a free spot right in front of the building, so I was unprepared for contingencies, like all of the unreserved spots being taken and having to find the underground lot.

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“That doesn’t sound good, Mommy.”

I had no idea where the entrance to the underground parking was, and, at first, I ended up in the underground lot for a different building. After wandering around blind corners for quite a while, and finally finding an exit back to the above ground world, I was tempted to just park in one of the reserved spots and risk being towed. But then I balked. I really don’t want to be towed. Or ticketed. Or have to find an alternative way to get back home (I do not have the uber app, or anything like it, on my phone, nor do I have any idea how one might use it). So, with ten minutes left before I was supposed to be at the exam, I went searching for the entrance to the right underground parking lot, and finally found it. Most of the spots underground were reserved for companies in that building as well, but I found a spot on the lower level that was magically free and unmarked. There were no numbers for the spots, or for different sections of the lot, and I didn’t even see a sign for which level I was on, but I had five minutes to get upstairs so I couldn’t worry about that, yet. I found a stairway up to the ground level, and then another to the second floor office suite where I would take the exam, and I made it with one minute to spare.

Phew.

The pre-test procedures were complex and unnerving: five or six palm scans, two forms of ID, an awkward photo, putting my cell phone into a plastic bag that would have to be cut open at the end of the test, and relinquishing everything except for my ID and my glasses to a locker. I couldn’t even bring my own tissues, or sucking candies (too loud). Then I had to go to a second staff member for more safety procedures: another palm scan, checking my glasses for tech, checking my pockets, and the tips of my ears; I had to push up my sleeves and pat down my pant legs to prove nothing was hiding there either.

Finally I was allowed into the testing room, with my locker key, and my ID for company. I couldn’t make any noise, and I would have to raise my hand if I needed to get up for any reason, which they preferred I not do until I’d finished the exam.

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“No wee wee pad?”

The test was one hundred and seventy questions, and, with the tutorial at the beginning and the survey at the end, took me an hour and a half. I spent half the time stretching and shifting and trying to get comfortable in the supposedly ergonomic chair and staring at the blurry computer screen (Allergies? Anxiety? Stroke?). About two thirds of the way through the test I started to worry that I might fail and have to sit through the horror all over again, but as soon as the final survey was finished (Did you enjoy this test? How was the drive? Did you really need those tissues?), the screen changed and told me that I had passed the licensing exam. The drama was over. I raised my hand to be allowed out and they gave me a print out of my score and wished me well, and sent me to empty out my locker and walk out into freedom. Okay, not freedom exactly, because passing the test meant that I would have to start the job search, which was a crushing weight quickly descending on my head, but, you know, free for the rest of the day.

I called home to let Mom and the dogs know that I’d passed, and survived, and suffered mightily, and then went in search of my car.

 

Except, the route I’d taken up into the building was closed to me in the opposite direction. The actual door that had opened into the building had no handle going the opposite direction, and I didn’t see any other doors nearby. So I went looking for another set of stairs, and went down two levels, and started to look for my car. I didn’t see anything familiar, but I hadn’t paid close attention in the first place, so I wasn’t worried, at first. I walked around the whole floor three times, getting more and more anxious. I called home and got so far as telling Mom that I was lost underground and couldn’t find my way out, when the phone cut off.

c pre groom

“Uh oh.”

So I did the only thing I could think of and retraced my steps up into the building. My legs were starting to wobble with exhaustion, and my neck and back were still hurting from the hour and a half at the computer, but panic carries a lot of adrenaline, and I was moving pretty fast. I tried another route back down into the parking garage and wandered the floor two more times, nothing.

I went back upstairs, and looked for signs I might have missed, and doors I might not have opened, afraid that my car had been towed, or stolen. Eventually, I tried a different floor of the parking garage. I was sure I’d parked two levels below the ground floor, but I was desperate, so I tried going down only one floor. Suddenly there was a sign that looked vaguely familiar, so I kept walking, and walking, and walking, and there it was! My car!!!! Just waiting there for me, not towed away or stolen or made invisible by aliens trying to mess with my head.

 

I called home immediately and Ellie barked at me, trying to tell me that I had been gone way too long. I felt like a truck was sitting on my back, but at least I wasn’t lost anymore. Mom promised a special celebratory dinner, but I warned her that I could still get lost trying to drive out of the underground labyrinth. But at least wandering in circles in the car took less time than wandering on foot, and I finally made my way out into the sunlight, and on my way home.

I was shaking with leftover tension, but able to drive home safely and get my greeting from the girls and from Mom and eat some dinner. The exam was over, and successful. The trauma of the day was over. But, I didn’t feel any relief. I felt like I was still stuck in that underground lot, with no clear signs telling me where to go or what to do. Even safe at home, with the girls sleeping next to me, I still felt like I was walking that endless labyrinth, and I realized how familiar that feeling has become for me.

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“We’re sleeping, Mommy. The story is over.”

I feel like every step forward in my life has been a step into the dark, with no clear signage, and no certainty that I’m even looking in the right place. Even when I can find clear milestone markers, like graduation, or a passed exam, I still don’t feel a sense of relief, because I don’t know which road to turn onto next.

I wish I could say something reassuring here, about how, eventually, I always find my next step on solid ground, but that’s just not true. What feels like solid ground to someone else doesn’t necessarily feel right or solid to me.

The next step is to send out resumes and tap into any contacts I may have, and network (eek!) to find a good first social work job. Hopefully the labyrinth will be more clearly marked in the future, or else I’ll have to bring Cricket with me on job searches, so she can warn me when I’m going in the wrong direction. Or at least let me know when I’m getting closer to snacks.

c post groom

“I’m great at finding snacks. It’s true.”

If you haven’t had a chance yet, please check out my Amazon page and consider ordering the Kindle or Paperback version (or both!) of Yeshiva Girl. 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 girl on Long Island named Izzy (short for Isabel). Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes that it’s true. Izzy’s father decides to send her to an Orthodox yeshiva for tenth grade, out of the blue, as if she’s the one who needs to be fixed. Izzy, in pain, smart, funny, and looking for people she can trust, 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.

 

A Study of Sleep

 

 

I had to do a sleep study for the new Pulmonologist. He did breathing tests, and x-rays, and walking-while-breathing tests, and inhaling-vile-stuff-while-breathing tests, and then he wanted a sleep study to see if sleep apnea was causing my exhaustion and shortness of breath. Each new doctor has his own set of tests you have to take, it’s their thing, and if you want them to take anything you say seriously, you have to jump through all of their hoops. I’d done a sleep study years ago that came out normal, but he wanted to check again.

I was really anxious that this new sleep study, which would be done at home, would be like the ambulatory EEG, which involved having a video camera pointed at me at all times, and wires glued to my head. But there was no video camera or glue this time, thank God. I had to wear monitors, but they were small and wrapped around my chest and abdomen with elastic, and a nasal cannula was stuffed into my nostrils, and there was a monitor on my wrist and middle finger to keep track of the oxygenation of my blood. It wasn’t especially humiliating, though neither of the dogs chose to sleep near me that night. I’m sure that was just a coincidence.

The results of the sleep study were, as I’d expected, normal. I do not have sleep apnea. The thing I don’t understand is, if you are going to study sleep to try to discover more about my overall health, why would you only focus on a limited area like sleep apnea? Isn’t there anything else about sleep that is worthy of attention?

I have always had trouble with sleep. Even as a kid, I would wander around, go to my Mom, visit the bathroom a few times, and then stare at the ceiling and count the circles in the asbestos tiles for hours. Every creak of the house made me worry about monsters under the bed. But even now, even when I get to sleep on time and wake up on time, I still don’t feel rested.

The dogs are champion sleepers. Cricket can pull a blanket off the couch and smush it into cozy nest for herself on the floor and take a short daytime nap any time she pleases. Butterfly will find one of the stuffed toys, anywhere Cricket has left it on the floor, and stretch out for nap right next to it. Cricket can stretch into all manner of unimagined yoga poses to vary her sleep style and keep it interesting.

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“Platypus needs this blanket more than you do, Mommy. “

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Two toys are better than one.

In fact, the dogs change sleep positions very frequently. I think I do this too, except that I don’t have as much room for variation as they do. I’ll turn over, or kick my blankets away, or curl up, or stretch out, but they actually move from place to place and alter the whole landscape of sleep. I only sleep on my bed, but they can sleep on my bed, on the hard floor, on their pet beds, on carpets, on couches, under couches, chin on a shelf, or chin on my leg. But no matter how they sleep, or when or where they sleep, the dogs wake up raring to go, and ready to go outside and pee, and then ready to eat, and then ready to get back to sleep. They can wake up and fall asleep so quickly!

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Platypus is a very accommodating sleep partner.

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But so are my shoes.

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Cricket can’t decide which bed to sleep on.

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Or maybe she should sleep on the floor.

It seems like the sleep study should have looked at some of the practical issues of sleep. Maybe along with the heart rate monitors and oxygen concentrations monitors and such, they could have asked me questions, like, was I too hot or too cold? Did I wake up during the night? Did I have bad dreams, or nightmares? Did I feel rested in the morning? But they don’t want to know if I kick or turn a lot when I sleep, or if I’m in pain when I wake up. They don’t want to know about problems they don’t know how to solve. All they want to know is if my breathing is interrupted when I sleep, because they have a machine for that.

Maybe if each doctor took a more detailed interest, in each area of testing, they could have figured out something by now. But instead they choose the easiest thing, for them, and the hardest thing for me, and come up with nothing. I bet if Cricket could read medical journals, she’d have me fully diagnosed by now. She could use Butterfly to monitor my skin temperature, and flavor, overnight, and she herself could test my reflexes with her patented Jump-On-Mommy-While-She’s-Still-Sleeping test. Both dogs watch me very carefully, and I’m sure if they could write they’d fill many notebooks with all of their trenchant observations. And yet none of my doctors have asked for their input in making a diagnosis.

Phooey.

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Diagnostic exam in process.

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Cricket consults with Butterfly before delivering her diagnosis.

 

The Glucose Curve

In January of 2014, Butterfly, my ten year old Lhasa Apso, was diagnosed with diabetes. We went for monthly visits to a doctor she loved, and did twice daily blood tests and insulin shots, and we seemed to be making progress. But, over the summer, her doctor left the clinic and Butterfly’s sugar started to go up and down like a roller coaster. By the fall, nice doctor or not, we had to go back to the clinic for advice.

Butterfly was not feeling well.

Butterfly was not feeling well.

The doctor who saw Butterfly in October was a per diem, filling in for the day, and he was concerned about her sugar. He made me very nervous, despite his choir boy face and laughing Scottish accent and frequent stops to tickle Butterfly behind her ears, because he said there might be another underlying health problem. He wanted me to do a glucose curve at home: starting first thing in the morning, I would test her blood sugar every hour or two, until I couldn’t stay up any longer, then I should send the results to one of the regular vets, to see if they could recognize a pattern.

But she always loves those ear tickles.

But she always loves her scratchies.

The glucose curve day was, possibly, the best day of Butterfly’s life. Every time I went to take her blood, she made me chase her around the apartment first, and after each test she got another chicken treat. I had to break the chicken treats into tiny pieces to avoid an exploding Butterfly halfway through the day. And, of course, Cricket matched her treat for treat, and attempted to climb the bookshelf to reach the bag of treats when the pieces were too small for her liking.

Butterfly's tail is ready.

Butterfly’s tail is ready.

Cricket's tail is running away.

Cricket’s tail is running away.

Cricket and Butterfly, ready for their treats.

Cricket and Butterfly, ready for their treats.

By the last blood test, at two o’clock in the morning, Butterfly was wiped out and ready for bed, but still willing to grab a last chicken treat on her way down the hall.

We made an excel sheet out of her test results, with comments about her moods, and meals, and exercise, and pooping. The vet we sent it to was duly impressed, but she said she was worried about Butterfly’s very low sugar numbers midday. She wanted us to lower the insulin dose and redo the curve in two weeks.

I liked the compliments – I really love compliments, and I especially like when my organizational skills are noticed and appreciated – but I was hoping for a different response. Anything but “do it again.” The second glucose curve, two weeks later, was closer to normal, and the vet told us to keep everything the same, and redo the test in a few months.

By December, Butterfly’s twice daily blood sugar readings were getting wild again, so I ordered extra test strips and lancets and chicken treats and woke up at 5:45 AM on December 30th and started testing her blood every hour or two, administering an enormous amount of chicken treats to get her, and Cricket, through the ordeal. We stayed up until 2 AM, or I stayed up, Butterfly took a few naps.

Nap time.

Nap time.

When we finally met Butterfly’s new vet in person, she had a theory she wanted to test: that Butterfly’s blood sugar was bouncing up so high as an over-correction to too much insulin, and if we lowered the insulin dose again, maybe things would even out. Two weeks on this dose, and then another glucose curve. This was becoming normal for us.

Cricket sniffed Butterfly all over when we got home, to make sure no extra treats had been consumed, but also to make sure Butterfly was still Butterfly. We’d tried taking Cricket with us to the clinic, once, and she spent the whole time hiding behind my legs and barking at everyone and everything. But still, staying home alone made her disgruntled and suspicious.

Cricket's suspicious face.

Cricket’s suspicious face.

Unfortunately, the low insulin dose skyrocketed Butterfly’s blood sugar levels into the too-high-for-the-meter-to-count range. She was drinking and peeing constantly, in the house and out, so even without a glucose curve, we raised the insulin back up. And, of course, waited two weeks and went through the whole day of testing again, to Butterfly’s delight. And the numbers were still not right.

I was afraid that the doctor would give up on getting Butterfly’s sugar normalized and tell me to accept that she’s just going to die sooner rather than later, and it’s not worth stressing about. But she’s my baby! And I am stressed about it! I was angry that being a conscientious dog mommy hadn’t added up to better health and better luck for Butterfly, and for my carpeting.

“What’s wrong with peeing on the carpet?”

And then Mom came up with a plan (okayed by the vet) to give Butterfly an extra unit of insulin when her blood sugar levels are high, and the regular dose otherwise. I have no idea if this will work long term, or why the doctors haven’t wanted us to try it before now, but so far it seems to be helping.

I just want Butterfly to feel better, and not need to pee every five minutes, and live forever. Is that so wrong?

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