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.

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.