Illness Part 9: Breaking Up

 "Can I break up with my endocrinologist?" I asked my primary care doctor, a General Practitioner.

He smiled, and said, "Well, you're the patient. You can do whatever you want."

That's patently false. I spend much of my time getting medical tests and otherwise jumping through hoops, so that my insurance will pay for things. I am not in charge. (But I should be, along with my GP.) In actual fact, my insurance company is in charge.

But, still, I was glad. When I started seeing the endocrinologist, my GP had said, "If anybody can figure out what's going on with you, she can." I looked forward to that. My body chemistry has been just not quite right all of my life. I have developed an aversion to hearing the word "should," as in, "...you should be feeling..." and, "...this should be working...", because often, that is not how I feel, and that is not how my body works.

After my thyroid was removed, my sister wanted to know what had caused it to be enlarged and covered in nodules. I told her, "Nobody seems to know, and they're not particularly interested in finding out." But I wanted to know. Something caused it. Should it be treated? Will it affect other things? So, my family and I were very excited to send me to a specialist, one who would figure it all out.

At my first visit, I went over things going back to my childhood. She seemed interested; she listened, and occasionally asked questions. But it soon became apparent that she was not looking for what caused the gland to need removed. Her entire process revolved around the fact that it was now gone.

Well, OK. It's probably hard to diagnose after the fact. I get that.

Still, any symptoms I had also were disregarded as irrelevant. Every appointment, I'd be handed a sheet asking me about symptoms, and I'd check box after box. Near as I can tell, no one even glanced at those forms. All that was ever discussed were my blood tests. When I'd bring up symptoms, I'd be told, "Don't worry. You're still adjusting. It will all even out eventually."

Ten years later I can say with conviction: it never evened out. Ever. (Illness Part 4: Symptoms) Through different medications, different doses, different protocols, I still have almost every symptom. I had them before the thyroid was removed, too. Obviously, there's something we're not looking at. I have become convinced that we don't yet know even what questions to ask, much less how to check my body. I just hear over and over about what "should" be.

Soon, I rarely saw the actual doctor, and just saw her physician's assistant. Not a deal breaker. I also rarely recieved eye contact from whoever treated me; they spent the entire visit, minus checking my vitals, looking at a screen and typing on a laptop. Years ago, this became standard. I don't know if the directions came from the AMA or the malpractice insurance or the medical board, but every single provider now spends their visit looking not at the patient, but at a laptop. They spend more time filling out forms to "prove" that they're treating a patient than they do actually treating patients. That annoys me tremendously. But, as I said, it's standard; I can't really get away from it.

I have listed the issues that I had even getting an appointment (Illness Part 5: Caring For My Health). It was just so exhausting, and gave me a bit of insight into the fact that the office ran exclusively on PROCEDURE. Again, not terribly unusual and not a surprise, but so aggravating. Every office seems to expect everyone in the outside world to know about and comply with internal procedures as a matter of course. This is a problem, because the layperson doesn't work in your office, so of course they are not going to know How You Do Things.

Now, actually being seen at the office, I had to deal with the office staff too often for anyone's comfort.

For instance, I had to be seen every month. To me, that means "roughly every 4 weeks" or "in 28 to 32 days." Not to the office staff; to them, it meant in 30 days, exactly. If day 30 landed on a weekend, the woman making the appointments would fuss and huff and talk about "getting back on schedule next month."

I once pointed out to her that my monthly blood tests were not 30 days apart. I was sent home with a paper, and I took it to the lab and got tested whenever it was actually convenient. Usually, I did it on day 25 or so, but it might be on day 15 or day 29. She looked at me blankly, like she did not understand the language I was speaking, and then gave me a long explanation of how I had to come in every 30 days EXACTLY "so the records will be accurate." The fact that when my blood was drawn seemed far more critical than when I walked in the door to discuss it with the doctor seemed to just pass her by. Finally I just ignored it and resigned myself.

Then one month, as I was leaving, I was asked to come back in exactly 30 days, and I balked.

"That's the first anniversary of my mother's death. I don't want to even leave the house that day."

"Oh, you'll be fine. Just take yourself out to lunch, or maybe go shopping."

I stood there in disbelief and stared at her. What I wanted to say is, "Oh, of course, a nice restaurant meal will totally distract me from the fact that my mother is dead." But I didn't say that. (In retrospect, I should have.) Instead, I said, "I would really like an appointment on another day. Can I come a day later?"

"No, no, no, it's thirty days. You'll be fine. How's 11:00?"

I wanted to scream, "It is not FINE. She is GONE. Don't you have a mother?" Instead, I got an appointment for 11.

It wasn't too many months later when I ran into an issue that she couldn't bully me through. The only appointment available in 30 days was at 8:00 am. The office is 30 minutes away from my home, and I had to pick up a child, a child who did not yet drive, from a class at 7:30 am. The class was 10 to 15 minutes farther away from my house, so if my child walked out on the very stroke of dismissal, and I had great traffic and luck with lights all the way home, I could potentially leave home at 7:45. The math simply did not work, especially during rush hour traffic.

I explained all of that, and asked for another day. No, of course, I HAD to be seen on that day, and that was THE ONLY appointment available.

"I WILL be late. I can't avoid it," I told her.

"Just get here as soon as you can," she said.

Fast forward exactly 30 days. I browbeat my child, with instructions to come to the car immediately at dismissal, to not stop and say hello or goodbye to anyone, just run out to the car. Eyeroll; "I will, Mom." And he did. I drove like a crazy person home to drop him off, then sped across town. I was, as promised, and guaranteed by the laws of physics, late.

"You're late," the receptionist huffed.

"I know. I told you that I would be. (This was literally the same woman who made appointments.) I had to pick up my son across the valley at 7:30."

"Well, I don't know if we can even see you now."

"When I asked for a different day, because I'd be late, you told me that you couldn't do that."

"The patient after you has already been called in!"

"OK, you gave her my time slot, so give me hers." 

"Her appointment was scheduled after yours!"

"So you said. You have two patients, and two time slots. You gave mine to her, so give hers to me."

"We can't see you if the patient after you has already been called in!"

At this point, I threw out any pretense of being polite. I raised my voice; I'm an actor. I can project. "I told you that today was not convenient for me. I told you that I would be late. I asked for a different day or time. I don't know why I'm here, anyway! I can tell you exactly how this appointment will go. I will walk in and say, 'I feel great.' She'll say, 'But your numbers are terrible,' and I'll walk out of here with a new prescription. I COULD DO THIS OVER THE PHONE."

She stared at me, then out at the semi-full waiting room, and said, "I'll see if we can get you in."

And just like magic, they could. It took all of 15 minutes for the entire thing, from being called in, to being seen, to being dismissed. I walked out of the office with the predicted new prescription.

That was the day I decided that I didn't want to go back.

"I don't ever want to speak to anyone but you about my medication," I told my GP. "If I'm sick, I can see whoever's available. But I don't want to discuss this with anybody else. Ever."

Well, I didn't quite get my wish. I've seen the Physician's Assistant repeatedly. Now, my doctor is going on a church mission out of state. Some day, he will retire. Maybe, by then, I'll be OK with that.

But I have never regretted breaking up with my endocrinologist.

A Rock and a Hard Place

Even though I expect it, in theory, I am still constantly surprised by how differently people view the same - or similar - circumstances.

We all do this, I think. We're sure that the facts point to a certain conclusion. Of course, there are often many valid conclusions. Life isn't so much a coin with two sides as it is a D&D die, with 20 possible sides.

Years ago, I was talking with another mother about something to do with kids being sick; maybe one of us had a sick child at that point. Then we talked about being grateful that we had medical insurance. As a young mother, I saw our medical coverage as pretty magical. For the first two decades of raising kids, a doctor's visit was $5. When people talk about "Cadillac insurance," that was what we had.

"Yeah," she said, "sometimes my parents couldn't even take us to the doctor without worrying. Or, they'd wait until we were really sick."

"Mine, too," I agreed. My parents had 4 kids, and our income was pension checks and a part time job. We never applied for any kind of assistance, either; that was for "poor people," moochers, or impending starvation. At the beginning of every school year, in the beginning of term forms, schools sent home a one page form for school district sponsored insurance. We'd get that when I was in school; it didn't help much, but it did help.

Being sick always meant waiting to see if an illness got worse or got better. If we started to feel better after two or three days, we knew it was a virus that would pass on its own. If we got worse, it meant prescription medicine, so that's when we went to the doctor. It seemed really normal to me - why panic if it was something that would just pass? My husband's father always phrased it this way - "Going to the doctor's office just exposes you to a bunch of sick people. That's where they all are. Why take your kid there unless you have to?"

The other mom started telling a story about her brother being sick, and how her parents waited to take him to the doctor, because they couldn't afford the visit. I can't remember what he had; honestly, until a certain point, this conversation wasn't really memorable, so I likely would have forgotten it entirely until it took an unexpected turn. At this point, it was all totally familiar and expected to me, like a conversation about getting dressed every day.

"By the time they went, he was so sick!" she said.

"Yeah, I remember what that's like." She'd reminded me of an illness that I'd had at 11 or 12. "Mine did the same thing."

"He could have died!" Years later, she was still upset about it.

"Me, too."

At this point, I thought we were still on the same page - we have a ridiculous medical system in this country. No other "first world" nation makes its citizens choose between medicine and food, doctor's visits or rent. No parent should be forced into that decision.

So, here I was, thinking that we both blamed the system. I was wrong. She blamed her parents. And the fact that I did not blame her parents deeply upset her. "I would do without anything for my son! I would take him to the doctor even if it meant that we'd end up homeless! No decent parent lets their child get sicker and sicker!"

Ouch; so, here, our opinions parted, because I agreed with my parents' choice, even when I was the sick child.

The illness I was thinking of started predictably. I always got sick easily and severely. It wasn't until I was in my 40s and had my thyroid removed that I could pinpoint any possible reason for that. It was just how it was. Being sick usually meant a week out of school, and often two weeks, even if it was "just a cold." I got the same illnesses every year. It was ordinary, like having to scrape your windshield.

Strep throat was one of those illnesses. I could pretty much guarantee that I'd have it at least once a winter, and often, more than once. It sometimes showed up in the warmer months, too. It just seemed to like me.

When I was in 6th or 7th grade, the winter that I turned 12, I got a case of strep that didn't respond to antibiotics. We went back to the doctor, and he prescribed stronger antibiotics, but the illness still didn't respond. It had been a couple of weeks already at this point.

I wasn't worried about schoolwork; my teachers sent it home, and I did it and sent it back, so I was maintaining good grades. (If I'd had the same attendence requirements that schools have now, I'd have failed at least three grades. Back then, they just needed you to do the work at home.) But, I was miserable. I was feverish, tired, headachy, and probably dehydrated, because it hurt to swallow even my own saliva. My mom made sure that I had juice, Jello, popsicles, and soup, but even cold, smooth food hurt, so I avoided eating or drinking too much.

When we made the decision to take me back to the doctor again, my dad insisted that we drive across town to see his doctor, instead of going back to my pediatrician. He was frustrated and angry that my doctor hadn't been able to find an effective treatment, and he wanted a second opinion. He trusted his own doctor more, he said, since mine was "failing" to help.

So, tired and grouchy, I was bundled across town to see my dad's doctor. He seemed nice, and his nurses seemed nice. They did the usual exam, and asked about symptoms - how long, how severe. He made sure to ask if I was actually taking my antibiotics, not just spitting them out when my parents weren't looking. I was mildly offended, but figured it was a fair question, since he'd never met me before and the drugs had worked in the past.

Then, he took both of my parents into his office, to have a private discussion. I was always annoyed by being excluded from conversations or decision making, especially when the decisions were about me, so I got a bit grumpier.

When they came out, they had a treatment plan. He explained that if the medications I'd already had hadn't worked, they'd have to give me something much stronger, and that meant shots. "This treatment isn't available orally," he said. I'd have to come in every single day to get shots until I improved, then taper down to every other day until I was well.

Shots never scared me or made me cry, but I've never liked them, either. Plus, I'd have to get out of my pajamas into real clothes and leave the house to go clear across town every day, which didn't sound great. But, being well again did sound great. So, OK, daily shots - let's do this.

He gave me the first shot before we left, and he and my mom discussed what time I'd come in every day. And, we went home with a plan.

It worked; after a few days, the fever was down, the pain was down, the headache was down.

The nurses tried to be cheerful, and alternated giving me the shots on the left and right sides, in this case being alternating butt cheeks. "Which side did we get yesterday?" a nurse would chirp while readying the premeasured vials of yellow liquid. I'd try not to roll my eyes. I mean, it was sweet, but there was no way to make this experience pleasant.

After a week or so, we tapered off to every other day, and that lasted another week or so. After that, I was back to school, back to normal, upset only at the quarter sized stain on my favorite jeans from an injection that bled. But, I was glad to know that there was a treatment that worked when others didn't, in case we needed it again some day.

When I was 14 or 15, I was talking to my mom about some illness or other - I probably had strep again - and said, "Remember when I had to go get shots every day?"

Of course she did. And, now that the danger had passed, she let me in on, as Paul Harvey would say, "the rest of the story."

That treatment plan had been a compromise between what the doctor wanted and what my family could pay for. The strep was turning into scarlet fever, and the doctor wanted me hospitalized.

Strep alone can be deadly, and often was in the days before antibiotics. There is a theory out there that Mozart died from strep. Scarlet fever can be even more deadly. In one scarlet fever outbreak in the U.S., there was a 5% fatality rate. For comparison, COVID-19 has a fatality rate up to 1%. If you read the Little House on the Prairie books, you know that Mary Ingalls went blind due to scarlet fever. The illness that took Helen Keller's sight and hearing is believed to have been scarlet fever.

When my parents said, accurately, that we could not pay for a hospital stay, they and the doctor collectively came up with this alternative. I would get shots every day. If I improved, fine, I stayed at home. If I did not improve, he would hospitalize me against my parents' wishes, and ask the state to take emergency custody of me, and therefore the state would cover the cost.

My immediate reaction was, "Thank you! I would have been so stressed in the hospital that I would have gotten so much worse!" Knowing that we'd dodged a hospital stay was the big deal for me as a teen.

Sometimes, I tell this story, and other people will say, "Oh, of course, being away from your parents would be so scary!" That's not quite what I meant. Sure, it would. But being around other people, 24 hours a day, was what sounded awful. Back then, children's wards were big open rooms with beds down both sides. It was easier for the nurses to watch over and care for multiple kids this way. You could get semi-private or private rooms if you had a lot of cash, but we (obviously) didn't. Being in a room full of other kids either meant that they'd exhaust me with chattering and interaction, or ignore me while chattering with everyone else. That was what happened every time I was in a group, especially of people I didn't know. Neither option was comfortable. Add in nurses and doctors checking on me at all hours, and it was exhausting to even imagine. I couldn't imagine getting well that way.

I still dislike being in the hospital. I do not understand people who find it restful or reassuring.

Still, my comfort was not my parents' primary concern. They didn't make their choice in order to spare me from awkwardness, even though my first inclination was to assume that they had. It's pretty easy for someone to say that "any reasonable parent" would hospitalize their child "no matter what," but there were 5 people at home. My dad was retired, with a heart condition. They simply could not prioritize me, or any one of us, over the other four, or over their continued ability to pay our bills.

It took years before I started thinking of the other side of that coin, the "emergency custody" side. To do that, the doctor would have had to allege medical neglect. I would have been a ward of the state. After I was well, my parents would have had to petition the court to regain custody of me. Now, I can see how terrifying that must have been for them. I can imagine them asking a judge to send me home, and the judge grilling them - "How do we know that this won't happen again? How do we know that she'll receive adequate care? How do we know that your other minor child is safe?" It would have been a nightmare.

The worst part of that scenario, of course, is that I absolutely was not neglected. They had taken me to the doctor, repeatedly. I was taking medication, as prescribed. They weren't hermits who refused all medical care. They were trying their hardest, but their kid was sick, and getting sicker.

Despite my friend's conviction that sleeping in the car would be a reasonable choice at that point, she was a single mom with one child. We didn't even have a car that would sleep all of us. Besides, being homeless, especially with a sick child, is likely to result in your child going into foster care. So, while I think that she's a compassionate person and a dedicated parent, I can't agree with her about this.

I think that both my parents and the doctor handled the situation properly. Defer to parents' wishes, but have a plan B in case the child's life is endangered. Everybody's rights and opinions are respected. The child gets treatment, which is the entire point of health care.

My anger is not directed at my parents, who were doing everything that they could. It is not at the doctor, who recognized the illness and its possible consequences. It is at a system that makes parents choose between hospitalizing their child and facing financial ruin for the whole family, or losing custody of their child. No parent should ever have to make that choice. Ever. The only thing worse would be being faced with that decision, and then criticized for it - which is what happens when you decide that all "good" parents will do things the same way.

Our system treats medical care the same way it treats unnecessary consumer products - the whole idea that demand will even out supply and cost. It's not a purse or a car, it's a life. They're different.

So, while I am beyond glad to have had our "Cadillac insurance" while raising my kids, I still view the system as profoundly broken. And I become more and more impressed by my parents' ability to navigate this hostile landscape.

Not a Germaphobe, But...

I am sincerely not a germaphobe. I mean that; I'm not the kind of person who disinfects their knick-nacks weekly, but thinks "that's just normal."

Let me give you an example. I believe firmly in the five second rule, unless the item is wet or sticky. (Mythbusters confirms this, by the way.) Once, as a kid, I dropped an Oreo, then picked it up and blew on it before taking a bite. Another kid looked at me with disgust, and said, "You know that you can't blow the germs off, right?"

I said, "I'm not worried about germs. I'm blowing off any dust bunnies," and took another bite. I mean, who wants a mouthful of lint?

Thinking about it, I wonder if that kid ever talked to me again. Other children did not find me endearing.

Anyway, that's where I'm coming from when I say this: how you handle your illnesses could potentially kill me.

I know that's hard to understand, because I know lots of normal people who can't quite imagine it. But there it is.

Let's talk about my lungs for a minute. I spent years, in fact all of my childhood, not really thinking about my lungs. They were there, they worked, end of story. Now, it's a whole different ball game.

More than 20 years ago, I went, with my family, to a friend's wedding out of state. It was lovely, we had a great time, but I got sick on the way home. I grumbled about the misery of being sick in the summer, and finally had to go to the doctor. I was diagnosed with bronchitis, and given medication.

I'd never had bronchitis as a kid. The sensation of trying to breathe but not getting any air was new.

Anyway, I went through a full course of antibiotics, but still didn't feel well. So I had a second course, and then finally, a third. It had been over two months of illness by this time. The doctor assurred me that I was fine, but I didn't feel fine.

I went back to the doctor's office a fourth time. "I don't understand why I don't feel better," I said. The physician's assistant looked at my chart and said, rather irritably, "You've got to come to terms with the fact that you now have lung damage. You're undoubtedly going to be asthmatic from now on."

Note to health care professionals: You may want to ask if a patient has ever been informed that they have a condition before you tell them to accept it. I had never been informed that I had lung damage, or that I was now asthmatic, until that moment. It was not a great way to find out.

It took months to get used to my new normal. When I finally did, though, it got to the point that I rarely thought about asthma. I didn't need daily medication, or adjustments to my life. When I got sick, though, with even a cold, it would move down into my lungs and I'd need an inhaler. It's annoying, but doable.

More than a decade passed that way. Sick = treat my lungs; well = business as usual. Of course, "usual" was the new usual, right, the one with diminished lung capacity. Still, I'm not a pro athlete or professional musician, so the new normal worked fine. Actually, it gave me empathy for people who struggle daily.

I'm still not entirely sure what happened. I didn't move to a new climate, get a new job, gain or lose a ton of weight, take up smoking or vaping, or change in any other noticable way. But slowly, my lungs got worse. Then, for no reason apparent to me, they got rapidly worse.

I'm guessing it's probably the same thing that happened back when they were initially damaged - I got sick, it lingered, more damage. I can't pinpoint a moment, and (much as I really do love my doctor's office) nobody really tried to sleuth out why or when - they just treated the symptoms. So, instead of a rescue inhaler, I now have 2 daily inhalers (different drugs, different treatment regime; one is once a day, one is twice a day), a rescue inhaler (potentially every 4 hours), and a daily COPD pill. (I didn't think the pill was doing much until I ran out, and went for 10 days without it.)

I struggle to breathe, every day. The last three years have been difficult. Things that were always irritants - I have allergies - now are perilous. Dust, pollen, animal fur, cold temperatures will all seize up my lungs, to the point that I'm struggling for oxygen. Not "for air;" - I know some people feel as if they have a weight on their chest, or a band across their chest, but I feel as if my lungs are taking in the same amount of air, big, deep breaths, but there's no oxygen in the air. It's like breathing helium. Your lungs inflate, but you get no oxygen.

My voice will either get thin and breathy, or low and growly. That's usually the signal - break out the rescue inhaler. Sometimes, I don't notice. My daughter in law has gotten really good about saying to me, calmly and conversationally, "Your lips are turning blue. You probably ought to take your inhaler."

I do a lot less outside my home. During the winter, especially, I won't even go grocery shopping after dark. It's too cold - I can't breathe. Some days, I'm reduced to writing notes and giving hand signals to my family, and I've lost perspective enough to spend those days thinking, "Hey, no coughing fits! I'm doing great!" instead of, "Holy cow, I cannot even carry on a conversation."

Just in case you're going to say something like, "Hey, how do you know it's not just your weight?" or, "Maybe you're just out of shape," be aware that I've had those conversations with doctors, I've gone to see specialists, I recently had a cardiologist get (really annoyingly, frankly) complimentary about my heart health after a cardiac stress test.

Ironically, while going to the grocery store or my Rotary Club meetings has gotten difficult, going far away is often fantastic. Hawaii, Florida, cruises - my lungs love it there. We recently spent 11 days of a 14 day cruise entirely at sea, and my lungs were so happy. No dust, no pollen, no animals, no cold - two of my three inhalers never left their packaging. (I take the once a day inhaler no matter what.) It felt absolutely healing.

Then I came home, ran my vaccuum, and was back to writing notes. Coughing, wheezing, siiting in my recliner obsessively measuring my oxygen saturation and pulse; that kind of thing happens way too often.

I have a little fingertip monitor for my oxygen saturation and pulse. In a perfect world, saturation would be 100%. In most people, it's 96% or 97%. If you're in the hospital, alarms will go off if yours hits 85% (I know from experience). I have spent days with mine hovering at 90% to 91%, with my pulse rate at 112 beats per minute. 120 beats is considered normal for "strenuous exercise." All it takes is dust, or pollen, or a cold, or... you get the idea.

Once, mine was so low that the monitor couldn't read it. My son, my husband, everyone got readings but me; for me, it said there was no finger in the monitor. Naturally, I try to avoid that.

So, that's my normal existence. Now imagine how I feel about illnesses, especially those that affect the lungs. I'm not just talking about COVID-19, I'm talking about the flu, pneumonia, bronchitis. Any of those could kill me, easily.

My bonus daughter is a nurse, and in discussing coronavirus online, she was explaining that "it's like the flu" does NOT mean, "it's mild, no big deal." It means, "It's deadly, and will kill thousands every year." Her exact words were, "We should be terrified of viruses. We've gotten complacent and lazy." We view illness as an inconvenience, not a killer. We're wrong.

You know what used to kill people every year? Winter. The cold, the lack of available food back in the days when you had to grow and hunt your own, then try to store it long term with no refrigeration or canned goods, killed the old, the young, the sick, every single winter. People would travel to their neighbor's farms, or into the village, when spring came, in order to see who survived and who passed away.

Anyway; I digress. Illnesses are scary and can kill me. They can kill you, too, but they'll take me first. But to do that, they need to pass from one person to another. You know what prevents that? Staying home when you're sick!

Advertising tells us differently. It says, "Take this over the counter medication, and you can go about your day like normal! Go to work, go to the gym, go out to dinner!" That's terrible advice, terrible. That's equivalent to driving drunk. You're gambling that your behavior won't harm or kill someone else, and you're doing so in order to have fun or to feel good about yourself. Because, too many of us feel that being sick is being weak, and not being able to carry on is a sign of bad character.

I just read about a young lady who passed away from COVID-19; her family said that she felt strongly about doing her job, so she went to work "until she couldn't breathe." I admire her love of her job and her clients, but she may have killed some of them.

The worst thing about this virus is that it can pass to others when you have no symptoms, when you don't know that you have it. That's why we're all quarantined at home.

When you're sick, even "just a cold," stay home. During a pandemic, stay home, even if you're healthy. Don't become a carrier.

You wouldn't drive drunk - at least, I hope not. So, don't spread germs. Don't spread viruses. It will kill those of us who already have health issues. Natural selection does not cover your arrogant, self absorbed or careless behavior. Nature is not designed around you getting your own way at the expense of others.

Society shut down for fear of polio, and most times, polio would not kill you.

You can handle some boredom and inconvenience. Stay home. I'm trying to breathe.

When Strangers Pick Fights

I try not to engage in any kind of confrontation with strangers. (Frankly, I try not to be contentious even with non-strangers!) It usually serves no purpose other than to make tempers flare.

All of us see and hear things that we find distasteful (or offensive, or harmful) while we're out in public. In general, our best bet is NOT to engage people in arguments. My husband and I both cringe every time we remember hearing a father inform his toddler, "You are no son of mine!" Even three decades later, I am still annoyed by the memory of total strangers who walked up to me and told me that I should not be having children.

Of course, there are exceptions to every rule.

Over two decades ago, I had two daughters in elementary school and an infant son. One day, my son was feeling ill, and it seemed to be getting steadily worse. We phoned his doctor, who, in the absence of an emergency, couldn't see him until almost closing time. After juggling a sick baby with our daughters' after school gymnastics lessons, I made it to the 4:30 appointment. By that time, the baby was feverish, listless and miserable.

We left the office at 5:00 with a prescription, and urging to get it filled as soon as possible, or we'd undoubtedly end up at the emergency room. I don't remember what was wrong - probably bronchitis - but I remember vividly watching him get, very quickly, worse and worse.

My husband, the baby and I picked up our daughters from class at 5:30, and headed straight to Walmart, one of the only pharmacies open after 5:00 p.m. There was no such thing as a 24 hour or drive through pharmacy, at least not in our town, back then. The line at the pharmacy was huge; the pharmacist said, "Yeah, lots of crud going around," when I remarked on it. Due to the volume of customers, she estimated that we had an hour wait to pick up the medication.

We took the children, two of them having simply pulled pants on over their leotards, to McDonald's for dinner, hoping to both fill the time and feed everyone. My son only picked at his food; he was flushed and beginning to wheeze. A trip to the pharmacy window was unproductive - they hadn't gotten to his prescription yet.

We bought and administered some infant Tylenol for the fever, then pushed a cart fairly aimlessly around the store, killing time. Another trip to the pharmacy, and another long line, frayed my nerves. My son's temperature was over 100, and the Tylenol didn't seem to be helping.

Then things got worse - the pharmacy was out of the prescribed medication AND the generic equivalent. "We should be getting a shipment tomorrow." My husband had just taken the baby's temperature - 104. I started getting frantic.

"No, we need it tonight! He's getting worse and worse! Would another Walmart have it?"

"No, we already called around. You'll have to wait until tomorrow, or find another pharmacy."

"But you just said that no other Walmart has it, and all the other pharmacies are closed!" I was picturing a trip to the ER.

"Costco's open. Do you have a membership?"

"Yes! How late are they open?"

"They're open for another 20 minutes."

Of course, Costco was miles away. Luckily, most of them were freeway miles. With luck, we'd get there in time.

We hustled the kids out of the store and into the car. We still had 15 minutes. The baby looked like a wilting flower. In my panic to get to Costco on time, I did something that I never do - I left the shopping cart we'd been pushing him in sitting next to the car.

As the girls were buckling, someone knocked on my window. I expected a panhandler, and prepared to brush them off. I rolled down my window to an irate woman.

"I just watched you get in your car and leave the shopping cart sitting right there!" she said, pointing to the cart.

"I apologize," I said. "I'm in a hurry." I knew that was feeble sounding, but didn't much care.

She was not mollified. "Show some respect! Show some consideration for others!"

"I'm sorry," I repeated.

You know how some people just need to have their say, and once they've said their piece, they calm down? I assumed this woman was one of those people. She was not. She's the kind of person who gets angrier and angrier, the longer she talks. She ramped it up, expressing extreme displeasure at length, and with increasing volume. She informed me, repeatedly, that I was setting a bad example for my children. That wasn't what really bothered her, though. "People like you are the reason we can't even take our car out of our garage!" She proceeded to tell me the brand of her car, and quote its price, which was more than we paid for our first home. "Not everybody drives a piece of s*** like you do! And we can't even enjoy driving it, because of people like you! If I were to take it out, it would get covered in dents and scratches!"

The next thing out of her mouth was, "I have been nothing but nice to you..."

Hold it right there.

I did something I normally don't do. I interrupted, loudly.

"HEY! Criticizing someone's belongings is not being 'nothing but nice'! Swearing at me, especially in front of my kids, is not being 'nothing but nice'!" I had been quiet and deferential, but now I was loud and angry.

"When I walked out here, I had 15 minutes to get across town to the only pharmacy still open at this hour so that I can get medicine for my baby with the 104 degree fever! And you've kept me here talking to you!" I exaggeratedly started the car. In a voice dripping with sarcasm, I said, "Can I go now?" Yes, I know the correct usage is "may I." It didn't matter; I was going to pull out no matter what she said next.

She looked stunned, as if I'd slapped her. I don't think it had occurred to her 1. that someone who shopped at Walmart and drove "a piece of s***" could actually string together a sentence, 2. that I might have something on my mind and agenda more important than scratches on anybody's car, and 3. that yes, indeed, it is rude to swear at people and criticize their belongings. For the first time during the encounter, she lowered her volume and took a step backwards. "Well - I still think you're being a bad example for your children."

"So you said. Can I go now?" I said, putting the car in gear, in a voice that indicated that I was leaving.

"Yeah. Sure."

More sarcasm - "Thank you."

I dislike speed. I dislike speeding. But I practically zoomed out of the parking lot, muttering out loud, "If the pharmacy has closed by the time we get there, I swear... If they are out and we end up at the hospital..." I was incapable of finishing a sentence. My rosy child wheezed in his car seat.

My daughters chimed in. "I don't think you're a bad example, Mom! I think she's a bad example!" "I think her swearing was wrong!"

"Yes, well, all I care about is getting the baby's medicine."

I drove, uncharacteristically, 10 miles over the speed limit. In front of Costco, I practically shoved my husband out the door in front of the store, then parked the car. He dropped off the prescription with 2 minutes to go before closing. In 5 minutes, we had the medicine.

I did not start to truly calm down until an hour later, when the wheezing had stopped, and the baby's temperature dropped below 100.

I hoped that this woman would, the next time she felt like shrieking at someone, ask herself if maybe there were extenuating circumstances, of which she was unaware. We never know what's truly going on with others, folks. Refrain from deciding that you know everything.

And in case anyone wonders, if you tell me that you own a car more expensive than some people's homes, I will not be impressed. I will not think, "Wow, that's so cool," or, "They're so classy. I'm just not as good as they are." I will think, quite frankly, that you're not very good with money. I may also think that you're self absorbed. Possessions are not the way to impress or influence me.

If you ever see a parent hustle their kids out to their car, in such a hurry that they're distracted and leaving their shopping cart behind, just grab it and take it into the store. Then you can rightly feel very proud of yourself.

Also, 24 hour drive through pharmacies (which we now have) are a Godsend.

I'm Still Bitter

I apologize; I'm going to discuss bodily functions.

A nurse looking over my post operative tests offered me a compliment. "Your kidneys are rock stars! I have never seen filtration numbers like this!"

"Well, thanks," I told her.

Talking to my husband later, I was more emphatic. "HA! Vindication!"

My family got to listen to me air my grievance, again, about the time I tried to donate a kidney - I was a healthy match, and they turned me down.

Years ago, a man from our church congregation - I'll refer to him by his initial, S - developed kidney problems. He and his wife had moved to another part of town, but we still saw them occasionally. They're great people. After not seeing them for a few months, I could not believe the change in him. His skin was gray, his teeth and hair were falling out. I wanted to help.

His wife, children and step-children had all been tested for compatibility, but none were a match.

I offered to be tested. What good are healthy organs if you can't share, right? I don't smoke, I've never subjected my kidneys to alcohol, and I only need 1 myself. Right? My husband and kids were on board.

So, I was tested, and the initial blood test showed me to be a match. Huzzah!

I then got a phone call from the university medical center in the next state; they'd be handling the transplant, if all went well. The woman thanked me for my interest in donating. Then, obviously starting to fill out a pre-written questionnaire, said, "We know you're over 18. What do you weigh?" I told her, accurately. It makes no sense to lie to anyone, much less medical personnel. There were more questions, and she took down my address. They sent out a packet that I had to take with me to the doctor's office when I went.

I was sent to a nephrologist, a kidney specialist. When she walked in the room and saw me, she got a look of annoyance on her face. She informed me that she didn't think I'd be a suitable donor. "Generally, patients of your size aren't healthy enough to donate."

"Isn't that why we're running the tests? Isn't that what they'll tell us?" Geez, lady. Work on your bedside manner.

She began speaking to me the way you would to someone not very bright - slowly, with small words and too much explaining. "Generally, patients of your size and age are pre-diabetic. That means that your blood sugar is high, but you're not yet actually diabetic."

"I'm not pre-diabetic or diabetic. My blood sugar actually runs low."

"Even if that's true" - yeah, 'cause I'm a compulsive liar - "once you have only one kidney, your chance of diabetic complications is higher."

"That's why we're running tests, right?"

"I'm going to insist on extra tests for you," she said, detailing four or five extra tests that she would order. I needed heart monitoring, a stress test on a treadmill, and more not normally ordered. She was sure that the tests would show me to be "unsuitable."

All in all, with scheduling, juggling doctors, getting tests, and waiting for results, it was six months before it was all completed. One day, I had 14 vials of blood taken at once. The monitoring electrodes (and accompanying tingles) were a very odd experience. But, guess what? Green lights all around. My primary doctor said, "Everything looks great." I passed all the tests - not just squeaked by, but was certified to be in good health AND a great match, by medical experts.

I was nervous about the surgery, but my biggest concern was whether to travel the 5 hours or so to the transplant center by myself, or whether to bring my husband and kids.

Then I got a letter from the medical center, informing me that I would NOT be able to donate. Why? My weight; using that single criteria, they informed me that persons of my weight were not accepted as donors.

They would consider me for transplant if I could lose over 50 pounds in the next 6 weeks.

WELL.

I wrote a letter back. I write really great letters. I write even better complaint letters.

I pointed out that my weight was quite literally the 1st thing they had asked me in that first phone call. If it was in the unacceptable range, THAT would have been the appropriate time to say something, I said. I would have thought that they were being arbitrary and nitpicky, but hey, rules are rules. That would have been that. But to inform me of this after SIX MONTHS of testing? Oh, no. Not OK.

"You state, repeatedly," I wrote, "that your primary concern is the health of S and myself. This is obviously not the case. S's health cannot be your primary concern, or you would not have spent six months of a terminally ill man's life, and thousands of dollars of his insurance money, paying for tests that you would then disregard. Why would you order tests if their results were not integral to your decision? It seems a waste of resources and time, and S's time is limited.

My health cannot be your primary concern either, because you have ignored all of the tests and medical opinions indicating that I am healthy, in no danger, and a tissue match. Losing weight at the rate you recommended is also going against every medical opinion on weight loss, which states that drastic weight loss should take place gradually, and such drastic weight loss in a short period of time would thus endanger my health and wellbeing.

If all you needed was a single number, my weight, you had that in the first phone call. There would be NO need for any further tests if that is all your decision would be based on, but, in fact, you not only tested me, but ordered extra tests."

I hinted rather broadly that taking six months to do very extensive and very expensive tests, only to ignore the results, amounted to medical malpractice.

Good gravy, people! Do you want a lawsuit? I can do that. So could S, or his family.

Which is probably why I received a phone call as soon as they received the letter. "Hi," said the woman, tentatively. "I understand that you're unhappy. Very unhappy."

I then verbally expressed my unhappiness, saying things like, "You do realize that S's illness is terminal, right? Did having a potential living donor knock him off of, or down on, the waiting list for a cadaver kidney? Because if it did, I will be even MORE unhappy."

"No! No! He's still on the list!"

This left us circling back to the central point. As she attempted to defend their decision by telling me all the risks of obesity, and I kept asking, "So, why did you order any other testing? If you knew the first time that you spoke to me that you wouldn't accept me, why did you spend six months running unnecessary tests?"

"The tests are very necessary! They determine your eligibility."

"And yet, you did not use ANY of their data in making this decision! All you wanted was ONE number, my weight, which I gave to you over half a year ago!"

We were at an impasse.

I'm pretty sure that the answer was, "We don't want to be accused of being weight bigots, so we don't tell you this upfront. We let you be tested because we assumed that the tests would show us that you're wildly unhealthy, and we'd be able to deny you without saying that we don't consider fat people." They won't say that, of course. That would open them up to lawsuits, you know.

Speaking with S on the phone, I growled. "They didn't even ask me about things that would have sounded scary, like the pituitary tumors I was diagnosed with at 24. That, I would have understood."

That gave him pause. "You have tumors, but they didn't ask about them?"

"Yeah. They asked if I'd ever had cancer, but they're totally benign."

"The problem is, anything you have, you might pass to me. I can't afford to take on any more health problems, on top of what I've already been through." Well, that makes sense. I was not offended at all when he said, "Would you mind withdrawing from consideration?"

Not if it's your own decision, based on your preferences and/or information received! In fact, I'd already been removed from consideration, so all I had to do was not contest it. And I see his point. I've had tumors, cysts, fibroids - I grow weird things. (But no cancer. Or diabetes.) If my kidney took that propensity to S, well, that could be a pain in the butt. I understand his reticence.

I learned, though, not to gripe to other people about the weight factor. Mentioning how badly I thought they'd handled everything to another woman at church, all she seemed to hear was, "You're too fat, and you're ignoring medical advice."

"You could lose the weight if you wanted to," she said rather pointedly.

Aside from the fact that I'd just been certified as healthy, at my current weight, the fact that a crash diet is always a bad plan, and the fact that it's none of her business, there's the fact that endocrine and thyroid issues, which I've had all my life, mean that my weight is only sketchily related to what I eat or how much I exercise. A friend with a similar endocrine issue is a professional dancer (obviously in great shape), and once restricted herself to only 1000 calories a day and still gained significant weight. (By "significant" I mean "at least double digit numbers." I can't stand it when people call two pounds "weight gain.") But let's just circle back to "none of her business." So, I don't usually discuss it.

Can I call myself "healthy" with endocrine and thyroid issues? Well, what I can say is that every test the doctors ordered said I was within the success parameters. That's not subjective. And if they aren't asking the right questions, well, maybe World Renowned University Medical Center ought to rethink their questions.

In a way, they did. A few more months passed, and I got a call again. "We've reconsidered your case," World Renowned University Medical Center said. "We've discovered that we can have success with donors your size." All of my tests were too old to use, though - would I mind getting all of the tests done again? Yes. I would mind.

"S has asked that I remove myself from consideration. Thank you."

The good news is that S agreed to a transplant from a cadaver kidney from a donor past the usual age, and the last time I saw him, he looked and felt fantastic. The kidney from the older donor was doing a great job.

So, why am I now going from "don't discuss it" to "put it out on the Internet"?

Because my kidneys are rock stars, with filtration numbers rarely seen. Boo yah.

And yeah, even many years later, my family occasionally has to listen to me whine about "the time I tried to give away one of my organs, and they wouldn't even take it."

Rosencrantz Was Right

Rosencrantz: Did you ever think of yourself as actually dead, lying in a box with a lid on it?

Guildenstern: No.

Rosencrantz: Nor do I, really. It's silly to be depressed by it. I mean, one thinks of it like being alive in a box. One keeps forgetting to take into account the fact that one is dead, which should make all the difference, shouldn't it? I mean, you'd never *know* you were in a box, would you? It would be just like you were asleep in a box. Not that I'd like to sleep in a box, mind you. Not without any air. You'd wake up dead for a start, and then where would you be? In a box. That's the bit I don't like, frankly. That's why I don't think of it. Because you'd be helpless, wouldn't you? Stuffed in a box like that. I mean, you'd be in there forever, even taking into account the fact that you're dead. It isn't a pleasant thought. Especially if you're dead, really. Ask yourself, if I asked you straight off, "I'm going to stuff you in this box. Now, would you rather be alive or dead?" naturally, you'd prefer to be alive. Life in a box is better than no life at all, I expect. You'd have a chance, at least. You could lie there thinking, "Well, at least I'm not dead. In a minute somebody is going to bang on the lid, and tell me to come out."

[bangs on lid]

Rosencrantz: "Hey you! What's your name? Come out of there!"

Guildenstern: [long pause] I think I'm going to kill you.

-Rosencrantz and Guildenstern Are Dead, Tom Stoppard

I was supposed to have an MRI at the hospital.

I've had them before. This is, I think, number 6, but I can't be sure. Anyway, it's not a new experience. I had the first one well over 20 years ago.

It's fairly miserable, but doable. I mean, it's not fun, but on a scale of "inconvenient" to "please make it stop," it should be in the "I can handle it" range.

(Now for more medical information about me than you really need or want. It's backstory. I'm big on full disclosure, and annoyed by deliberate mystery.)

We had our first two babies so quickly and easily (two babies in two years of marriage, while using birth control) that we figured, hey, I'm one of those super fertile women who would make a great surrogate. Then we started trying to have Baby #3, and - nothing. No baby. So, we went to the doctor, then to a specialist, who determined that I'd need "aggressive" treatment to get pregnant again.

It seems that my hormones were off. My youngest was approaching 3, I hadn't breast fed since she was 8 months old, and my body was still producing both breastfeeding hormones and pregnancy hormones. This chemical "no vacancy" sign is what kept me from getting pregnant.

The culprit, it seemed, were three pinpoint tumors in my pituitary gland. I was supposed to get an MRI every year, to make sure they hadn't grown.

The treatment? None. "If you're not miserable now, you will be if we start messing with your hormones, guaranteed. Eventually, it'll get bad enough that you'll want treatment. Now, we'll just leave well enough alone," said my gynecologist. OK. Works for me.

I had maybe 3 MRIs before I skipped it for a good 10 years. Our insurance company changed 3 times in 3 years, everything had to be authorized anew, and it was a pain in the butt. I finally got one more, then skipped another 5 years or so. Save the lecture. Anyway, on the last scan, with a new doctor treating me, the original scans and diagnosis lost and the gynecologist retired, they found "no evidence of tumors." In fact, the doctor looked at me like I was a hypochondriac or suffering from Munchausen Syndrome, and was wasting time and money on unnecessary tests in order to gain attention.

No more tests works for me.

Now, though, years later, almost two years into hormone treatment brought on by thyroid disease, I'm back getting an MRI. Roughly 24 years after the original diagnosis, my blood tests show that my pituitary hormone levels are unnaturally elevated.

(The doctor wasn't kidding about the misery thing. Trying to regulate the meds, keep me happy, keep the doctor happy, and keep the insurance company happy is a painful and complicated dance, and it makes me grouchy just talking about it.)

Has anyone checked my pituitary levels in over two decades? I don't know. I've had gallons of blood drawn, but it appears that they only run this test if they think there's a need, and there's usually not a need.

Anyway, they want pictures of inside my brain, again.

The last time I had an MRI, maybe a year and a half or two years ago, it was to look at my neck and shoulder. I periodically need treatment for a pinched nerve, and after repetitive, recurring treatment, they wanted to see why. Turns out that my mild scoliosis pinches the nerve.

Anyway, I was sent to the facility where I'd gone before. The test isn't new, isn't, to my knowledge, different, but that time I felt like I was sausage meat being squeezed into a casing. My chest, my shoulders, my stomach, everything pressed against the inside of the stupid tube they slide you into in the middle of the MRI machine. My arms wedged tighter and tighter, since I couldn't put them next to me or on top of me, because there was no room either place.

They give you a microphone and a panic button, and I used both. "STOP, STOP, STOP!" They did.

Those slabs they put you on adjust up and down. I assumed that they'd just put it up too high, and they'd drop it down so I'd fit. Nope. The - what is she, a nurse? a technician? - appeared peeved, and said, "We'll have to send you to our sister facility. They have a machine there that will handle larger patients."

Wow - way to deliver that "you're too fat for an MRI" message with tact, honey. I'm not particularly touchy on the subject, but you managed to be "fat shaming." Thanks.

So. New appointment, new facility. It went just fine. Again, it's not comforting or fun, but it can be handled. You're cramped, but you expect to be cramped. It's loud, so loud, and you can't scratch, so everything itches. You can't cross or uncross your feet, even though they're outside the machine, and it's best to keep your eyes closed so you don't blink. Blinking counts as movement, and you have to be absolutely still. You can't even sigh - that, too, is movement. Heaven forbid that you have to sneeze or cough. It was OK, as medical procedures go.

This time, they sent me to the hospital closest to my house. I go where they tell me to, really - I don't have particular loyalties. If the insurance pays for it, I go there.

I was hopeful, because the first machine I saw was only about 18 inches deep - just a circle around your head. They're only looking at my brain, right, so I'll get that one, I thought. Woo hoo!

Short lived euphoria; I was ushered into a room with the familiar hulk of a regular MRI machine.

"It looks pretty small," I said.

"Oh, don't worry. It's not. I've fit really enormous people in there, people much larger than you."

They always ask if you're claustrophobic. I always say "no;" I don't feel claustrophobic. As a child, I built my blanket fort under my mother's built in desk. I was dragging a miniature TV under there into my teens. I don't worry about the things they strap you into for "Mission: Space" at Disney World, where they close you up in a capsule and put the screen and controls inches from your face. Inside cabin cruise ship bathrooms don't bother me.

But, as I said, MRI machines are uncomfortable anyway. You lie flat on your back on a plastic table. They try to make it comfortable, by doing things like putting a pillow under your knees, but it's not great for me. Staying that way too long hurts my back. And, because I'm in a bad mood, I'll admit out loud that I think unkind things about anyone who ever told me that my discomfort was weight related. My skeleton is twisted. Things that feel OK for "normal" people hurt me.

They put your head and shoulders in a little frame that's light bulb shaped and holds you immobile. They have to - I get it. It's not awful, but it's not pleasant. Then they strap what I refer to as "the hockey mask," a big plastic cage, over your face. Again, I know why. Again, that doesn't mean that it's great. Normally, I close my eyes, not only for the blinking factor, because nobody wants to stare at a cage over their face. This time, she put that thing over me and snapped the latches - KA-CHUNK! - and everything went dark, and I wasn't even inside the machine yet. Normally, there's open spaces over your eyes, but not in this thing. The open parts were over my forehead and cheeks.

"Oh, wow," I said.

"There's a mirror in there. You can look at that," the nurse/technician said.

A mirror? Truly? That's supposed to help? I don't get it. "Let's close your head up in this plastic bubble, but you can check your own eye makeup, if you want." I mean, I assume that they do that because it does help some people, but it doesn't help me. How is staring at my own eyes going to make anything better?

"Can we just take it off for a minute?"

She did. I adjusted myself up slightly - about an inch - and said, "OK, let's try again." Given a moment to prepare, I was OK. If I know what to expect, I'm OK. The unexpected is not my friend.

"It's going to squeeze your shoulders, OK? It's going to feel tight." She was sweet, really, and trying hard. She noticed, for instance, that I need a moment to prepare. So, I was ready for it to squeeze my shoulders. It didn't, but the "hockey mask" extended so far down that it was biting into my breasts. It didn't hurt, but it surprised me - how far down does the mask need to go? I said something about that, and she said, "Well, God has certainly blessed you."

Again, she was trying to be light and upbeat. It's not like I'm unaware that my breasts are large; I pack these things around every day. But when someone says something like that, saying, "Thank you" or, "I know" or anything of the kind smacks of bragging, and saying something self deprecating sounds like complaining (which is generally unpleasant, and goes over especially badly with the flat chested). So, I went with factual.

"I can't exactly take them off and leave them at home in a box." I mean, if I could, I'd fit into a heck of a lot of things.

You know what else I can't take off? My arms. Moving me into the machine, we encountered the arm problem again. I couldn't put them at my sides, and I couldn't rest them on my ribs or tummy. She tried hard to adjust them, but only succeeded in crowding my breasts further, and pinning my elbows to my ribs, with nowhere for my forearms to go.

"You're doing fine. You have plenty of room," she said.

DEFINE "PLENTY!"

How can there be no room to put my arms next to myself or on top of myself, but there be "plenty of room"? There wasn't "plenty" of anything! I felt like a sausage again. She stopped feeding me any further in, but kept saying nonsensical things like, "You're almost there!"

We're looking at my brain! Why do I need to be stuffed into this machine up to my freakin' knees?

"It's pinning my elbows."

"It's going to do that."

IN "PLENTY OF ROOM?"

"We can try later, with sedation."

"No, we can't. My veins are so difficult that, last time I had surgery, they sent me home after trying to run an IV for 45 minutes. They went up and down my arms, my legs, my feet, and couldn't get a needle in."

"We can reschedule."

"The doctor's office has refused to renew my prescription, on the medication I'm supposed to take every day, for the rest of my life, until they get these test results."

This is the point at which I started to melt down. The PA at my doctor's office had come totally unglued when she saw my last blood tests. She freaked out. Normally, I like her, but she didn't let me finish a single sentence, and she said things like, "You'll HAVE to return to (the office of a specialist that I dislike)," even though my primary care doctor had assured me that I DON'T need to go there. "I don't know how to treat you."

"Can I just stay on the dosage that works for me?"

"It's not working! These numbers are terrible!" Doctors keep trying to return me to the chemical levels that I had back when the thyroid disease was diagnosed. (See "Illness, Part 8: Meds.") It's an ongoing battle. How can the levels I had while battling disease be a reasonable goal? When the numbers get anywhere near there, I sleep for 18 hours a day, and they tell me how good I "should" feel.

Last time, the PA only conceded to a shortened order of medication, and made any further refill conditional on the results of the MRI. When I picked it up, the pharmacist said, "Um, I have here a note that says that we can't refill this until you've had a visit with your doctor. Are you aware of this?"

"Yes. I'm aware."

Now, the only medication that lets me function reasonably, and which I need for the rest of my life, is being held hostage until I stuff myself into this plastic tube that is constricting my chest, ribs, tummy and arms.

For crying out loud, it's not like these are narcotics or anything. It's dried pig glands.

"Just give me a minute or two. I'm sure I can handle it." Yeah, that sounds convincing when you're on the verge of tears. I can't breathe in this thing.

The nurse/tech levels with me. It will take an hour or more. I need ten, TEN (!) separate scans. Then, I'll be wheeled out of the machine, given a dye injection, and all TEN tests will be run AGAIN. "Look, we're talking about a minimum of 50 minutes in the machine."

I didn't ask if that meant 50 minutes total or, heaven forbid, 50 minutes both before and after the dye.

"Oh, no. No, no, no." Ten, fifteen, even (gulp) twenty minutes, maybe. AN HOUR? No. Not possible.

"It's OK," she says repeatedly. "I'm claustrophobic. I know how you feel."

As I get ready to go, and cry, she assures me that there are "open MRI machines." "They have a crescent top and a crescent bottom, but the sides are open. There's at least two in town. One is right down the street."

Fine. Whatever. I am so miserable; we've added another medical visit to my calendar. This week alone, I need a blood test, a PICC line installation, and surgery in which they'll saw my bones in half and then screw them back together in a new configuration.

And my husband wonders why I'm hoping for menopause instead of having my fibroids removed.

From now on, when they ask if I'm claustrophobic, the answer is, "YES. Very. In fact, this room is too small." Put me in the "open" machine.

I know that this is a first world problem, no big deal, small potatoes. And yet, I'm miserable. Does it make sense to take a woman with a documented hormonal imbalance, and try to stuff her in a misery inducing box?

The poor nurse/tech tried so hard to console me, offered me water, walked me to the elevator. It was so nice of her, and yet I wanted to be totally alone. I don't generally handle being consoled well.

Now I have to wait for a phone call from whatever facility specializes in portly, panicky patients.

I have no moral or message here. I'm just grouchy.

Rosencrantz: In a box. That's the bit I don't like, frankly. That's why I don't think of it.

You and me both, brother.

Illness, Part 8: Meds

I made a prediction to my family: "Watch. I'll go in (to the doctor) and say, 'I feel great,' and they'll say, 'Your blood levels look terrible!'" Sometimes, I like to make predictions that I'm positive are a sure thing, so that my loved ones will be impressed by my prognosticating prowess.

Almost a year ago, my thyroid was removed. It was enlarged and covered in cysts, and my life has been better without it. My biggest problem since then has been the attempts to regulate my medication. Without a thyroid, I'll be on medication for the rest of my life to do the job the gland used to do.

The problem is that mine did its job badly - hence its removal. OK, that's not the whole problem. My body chemistry has never been quite right. I've never had regular periods. I've had diagnosed hormonal issues since I was in my mid-20s, over 20 years ago. I was having trouble getting pregnant, and the OB-GYN ran an MRI and found pinpoint tumors in my pituitary gland. That's worse than it sounds, despite the fact that it means brain tumors. One, they were tiny, very tiny. Two, my last MRI, taken a few months ago, came back clear. We have no idea if that means that they shrunk, that they were never there or that the new scans weren't read properly. The doctor who originally diagnosed the tumors has long since retired, and the original scans have been lost, so they are not available for comparison. Sigh. (At least my blood work shows that my body no longer secretes breastfeeding hormones, years after I stopped breastfeeding. That was one of the originally documented "Huh?" moments.)

Over those 20+ years, I've also had blood tests designed to tell me about my thyroid function over and over, because I've always had symptoms of thyroid issues. Every time, the doctors looked at the results and said, "Your thyroid is fine" - until it had to be removed. (Yeah, dozens of symptoms, persistent over decades, or a blood test - which one are you gonna believe?)

Since then, my endocrinologist and I have discovered that I am something of a paradox. I feel better with a chemical composition that usually makes people feel worse. "I've read about people like you," the endocrinologist said to me, "but I've never actually met one before." So far, we haven't tried to figure out why this is; her office is still trying to wrap its collective head around the fact that it is.

Normally, the higher the concentration of thyroid produced hormones in the blood, the better a person feels. They have more energy, more mental clarity, they lose weight. When the concentration is too low, they are exhausted, mentally foggy, sluggish and gain weight. Doctors have been trying to increase my dosage since weeks after the surgery. Every time, I feel awful. I sleep for 14, 16, even 18 hours a day, but it takes hours to fall asleep. I'm grouchy, have no energy or focus, and get sick easily. Drop the dose, and I sleep normally - I fall asleep quickly, and I wake up 8 to 9 hours later (without an alarm). I have energy. I don't need naps. I rarely get sick. I feel better than I did before the surgery. I like feeling this way.

The problem is that how I feel does not match how the medical literature says I "should" feel.

The medication prescribed for me after the surgery was apparently one of the most common. We had never managed to get me back to the way I felt in the weeks immediately following the surgery, when I felt great but was "supposed" to feel my worst. It was workable but annoying - especially since any time I said, "I'm tired" or "I'm always exhausted" the response was, "We'll raise your levels." NO! That's what caused this feeling!

Then, the manufacturer discontinued that medication. This, it turns out, was actually a good thing. I had to scramble to get in to see the endocrinologist, because I found out that the medication was unavailable when I had a single day's worth left. Silly me. Anyway, I had to see the doctor, because, heaven knows, they can't prescribe medication for a known, documented, unchanged condition without having you sit right in front of them. (I was originally told that I'd also need a blood test first, but they dropped that condition when it turned out that the lab could not get results in time.)

"Well, if you felt good on (the last medicine), I'd just prescribe one that's almost identical. Since you're not happy, though, let's try something new," she said. She prescribed a different medication "that functions totally differently inside your body. For some people, they feel better almost immediately." It's made from the dehydrated thyroid glands of pigs, and was the go-to medication for decades before humanity decided that Better Living Through Chemistry was the Answer to Everything, and naturally derived medicines were for the uneducated and superstitious. Many people who don't respond well to synthetic thyroid hormones do well on this medication. (I frequently refer to them as "my pig pills.")

She told me that I might feel better "almost immediately," so I woke up the next day pretty much thinking, "Show me what you've got." I didn't feel better - or worse - immediately, but after a week or two I did. I like these pills much better. I feel much better. My sleep habits resemble a normal human's - something that has not been the case for most of my life.

I'm supposed to take one pill first thing in the morning, and I never forget. I'm supposed to take one midway through my waking day, "to give you an extra shot of energy to make it through the day," and I frequently forget that dose. For one thing, it does not give me "a shot of energy." I don't really notice the difference at all. I usually forget until close to bedtime, and I'm not supposed to take it too late in the day, lest it cause insomnia. So, if I forget, I just take the next morning's dose. After all, I feel great. If it ain't broke, don't fix it.

When I went in for my first checkup after starting the new regimen, I'd been on these pills for about 8 weeks. I saw the physician's assistant (PA) instead of my doctor, which is fine. She's very sweet and competent, despite the fact that she spends most of our time together typing into her computer. I don't blame this on her, but on the current medical culture's need to obsessively document EVERYTHING. This time, she asked how I was doing, how I liked the new meds, and was all smiles with my answers - which boiled down to, "I feel great" - until she called up my labs, done three days previously.

She actually gasped. "I would expect you to be barely functional, like a zombie, with numbers like this! It looks like you're not even in treatment!" The more she stared at the screen, the more agitated she became. "I can't let you walk around with numbers like this!" Then, "Maybe it's lab error. We have to seriously consider lab error with numbers like this." Then, the dreaded sentence: "I'm going to have to increase your dose." UGH!

"I frequently forget to take my second pill. Can we hold off at least until I manage to get the hang of taking both doses?"

"How frequently?"

"More than half the time." This, frankly, was giving me more credit than I deserved - for the first two weeks, I hardly missed any second doses, but for the last month, I think I've remembered a whopping three times.

"The doctor's going to wonder why I let you walk out of here with numbers like this." Then, grasping at straws, "It takes a while for the medication to build up in your blood stream. Maybe it's just not showing up on the tests yet." Yeah, sure, whatever lets me flee the office without a new prescription.

"I get really tired of hearing that my numbers look great when I'm miserable," I told her. This is not new ground we're covering here.

"Of course, of course. You want to be treated like an individual."

See, that's the entire problem. Modern society makes no distinction between individuals. Last time I said almost the exact same thing, "I hate hearing that we have to keep my numbers at a level that makes me miserable," to my endocrinologist, the smile froze on her face and she said, tightly, "I can be held liable if it's determined that I've failed to provide you with a proper standard of care." I have intellectually understood that insurance companies and fear of lawsuits weigh more heavily than health issues and patients themselves in the health care system, but now I find myself smack in the middle of the morass and angry about it.

See, let's first talk about the terms "normal" and "average." "Normal" means "the majority of people fall into this category." ("Most" or "majority," of course, is anything over half.) "Average" is a mathematical term. It means either that you have taken all the available information, added it together and then divided it by the number of individuals it represents, or that it is the exact middle, with half above and half below. Scientists, mathematicians and average people will tell you that nothing is ever 100%. Just because a piece of information represents "most" people, it will never represent all people. Yet, insurance companies and other entities insist that everyone must fall into that middle area. They see no legitimate reason that anyone should ever be above or below that mark. It seems so clearly obvious that some people will fall above that mark, and some will fall below, but they don't see it that way. Everyone must be kept in that middle range, because, by golly, other people need to be there.

This is why, even though I had persistent symptoms of thyroid issues, I was told for decades that I "must" be fine, because the blood tests showed that my hormone levels were in that "normal" or "average" zone. It is also why, even after it was determined that my thyroid was diseased, the health care community feels compelled to return my body to the same body chemistry that existed when I was suffering from disease. It's "normal."

I am thankful that my endocrinologist is at least willing to listen to me. She hears and understands what I have to say. I'm lucky, though, that I fall below "normal." She's willing to let my numbers run low because, "It's far more dangerous to run too high than too low." What if my body's ideal was higher than "normal?"

Still, I feel that I have to fight. My doctor has to straddle the line between keeping me happy and explaining her actions to the insurance company; the company can refuse to pay for any treatment that is not considered "normal." Plus, she has to worry that, one day, I or a family member might sue her because I was not kept in that "normal" range.

I mean, if normal levels were not good for me, it seems obvious that something other than normal would be ideal. And why should anyone but me or my doctor make these choices? Why is it any business of my insurance company? I fear having to fight these battles again in the future, because I'll be on medication for the rest of my life, and my doctor will eventually retire.

So, I left with instructions to "Set an alarm! Don't forget that second dose!" Two out of three days I've remembered. That's progress.

Illness: Part 7 - Misery Loves Company

I admit it. I was starting to feel invincible.

I haven't been sick since I had my thyroid removed seven months ago. This is unheard of. I was a sickly child, and I became a sickly adult. If there was an illness nearby, I got it first and I got it worst. After my thyroid was removed, however, it immediately felt as if it had been poisoning me. Everything was better without it, absolutely everything.

I was exposed to all manner of illnesses, and caught none of them except for a mild cold. I was tired, congested and had a scratchy throat. It was nothing compared to what I was used to. The comparison would be like the difference between having your washing machine overflow and having to huddle on your roof waiting to be evacuated by helicopter during a townwide flood.

So, yeah, I got cocky. I said to my husband, more than once, "I wonder if it's even possible for me to get sick."

Last weekend, I went with my high school debate team to our state level competition. My son and daughter were both sick, but recovered fairly quickly. By the time we drove home, my husband and I had it. It wasn't too bad. The worst part for me was a sore throat. I had to continually chew gum or drink something to keep it from feeling dried out. I was tired. Still, it wasn't debilitating. I drove over 500 miles without a problem.

A couple of days later, just when I thought it was going away, the illness moved down into my lungs. I started sounding at good moments like Lauren Bacall and at bad moments like Wolfman Jack. I tried to sing along with the radio, and nothing came out except an odd squeak. I'm asthmatic, but I only need an inhaler when I'm sick, so my inhaler was two years old and not very effective. I was feeling exhausted, from low oxygen levels as well as from illness.

I phoned my doctor's office; it took over 24 hours to get an answer on a refill, and I was informed that I'd need lab work before I could get another refill. Already sick and grouchy, this made me grouchier. Labs? Am I suddenly not supposed to be asthmatic?

The inhaler was helping, but then I got hit with a whammy. About 90 minutes after I went to bed, I was woken up by stomach flu symptoms. I won't go into the gory details, but I spent as much of that night in the bathroom as I did in bed, and I seriously feared getting dehydrated.

My husband got the bug, as did my son. It only lasted about 24 hours. The worst of mine was over in about 8 hours, but it hung on for closer to 48 hours. As I write this, I'm hoping it's actually gone.

I have now been miserable for almost a week. I still can't breathe properly, and my insides are still rumbling.

OK. OK. I get it. I can, indeed, get sick. Lesson learned.

Now that we're all clear on this, can we ask the illness to move on?

Illness Part 6: Questions

I think that I might have a cold. The thing is, I can't tell.

After I had my thyroid removed, my entire body chemistry changed. I am not exaggerating - everything changed.

People who've known me for any length of time notice that I feel different. My sister remarked, over the phone and from hundreds of miles away, "You sound so energetic."

The one glitch, switching the dose of my medication, left me miserable for two weeks, but as soon as I spoke to my surgeon, he did what I was sure he'd do and said, "Sure, we'll switch you back." My endocrinologist said, "Most people feel better at higher levels. You're obviously not one of those people." THANK YOU for seeing me as a person and not as a statistic! I cannot stand hearing that something is being done to me personally based on a generalization about "most" people.

I'm sleeping less than I ever did. I routinely wake up five minutes before my alarm. I also actually fall asleep when I go to bed. It's glorious.

I have not been sick in the five months since the surgery. Never, ever in my life have I gone through five illness free months, EVER, and I'm 47. It would be astounding in the summer, but we've gone all the way through fall and most of the winter. I have been exposed to pneumonia, strep throat, laryngitis, the flu, numerous colds, coughs and sneezes, and I have caught none of it. Even my allergies are quiet.

Normally, I get it first, and I get it worst, if there's an illness within what feels like a hundred mile radius. My son has had two nasty bouts of the flu, right here in my house, and I didn't catch it.

Holy cow.

Three days ago, I was unaccountably tired and had sinus drainage down my throat. Well, it's finally happened, I thought. Here comes a cold. I took a nap and woke up feeling much better. "That's odd," I said.

"No, Mom, that's normal," said my teenage son. "That's how it works in normal people."

By that evening, my sinus issues still hadn't gone away. In fact, three days later, I still feel the same way. My throat is irritated, and I'm tired, despite having had a nap. I woke up with a sneezing fit and needed decongestants two nights ago. It's not bad, it's just not good.

On the one hand, I feel draggy enough that it's obviously different. On the other hand, I still feel worlds better than I did even on good days before the surgery.

So I'm still puzzled. Something is going on, but is it enough of a "something" to qualify as "sick?"

Either these are the most pathetic, weenie germs that I've ever encountered, or I don't have a cold. If I don't have a cold, what do I have?

If this is the new "sick" experience, I'll take it.