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 4: Symptoms

I know, usually symptoms are part 1 of an illness. Sometimes the timeline doesn't look quite so neat and organized.

After I had my thyroid removed in August, people said things to me like, "Was it making you just miserable?" Well... yes and no. I was certainly aware that the way I felt was not optimal, but it was very normal for me.

I really didn't care to discuss how I felt, either, as most symptoms were vague sounding and lent themselves to armchair diagnoses, and people telling me what I "should" do.

Take fatigue; it's been one of the overriding symptoms of my body chemistry gone wrong. Still, the fact that my body chemistry might be screwed was the last considered possibility on everyone's mental list.

It wasn't a new or alarming symptom. As a teenager, I never pulled an all-nighter, for any reason. Slumber parties always found me being the first one asleep. One of my childhood best friends had a slumber party at her house with half a dozen girls piled into the living room. The stereo was on, kids were dancing, the popcorn popper was going - and in the middle of it all, I was asleep on the floor. It was always like that. I was usually the last one awake the next morning, too. The other kids found me very odd.

I never understood the reasoning behind staying up late to study for a big test. Staying up late would guarantee me that I would do poorly on a test. I've never been intoxicated, but I completely understand why studies show that drowsy driving is indistinguishable from drunk driving. Being tired means that my thoughts, reactions, understanding of situations, reasoning ability, emotions, co-ordination and recall are all deeply impaired. If I wanted to do well on a test, it was best that I get extra sleep.

I've read that if you need an alarm clock to wake up, you're not getting enough sleep. That never made sense to me. "Your body will automatically wake up when you've had enough sleep to be refreshed," I remember reading. HA! I laughed. Without an alarm, I would routinely sleep 12 hours or more, and I never felt refreshed. Ever.

It's always been worse when I'm sick. A couple of years ago, when I had the flu, my kids left me alone until after 3 in the afternoon, when my son finally decided he'd better wake me up. (I'd gone to bed at 10 the night before.) Still, everyone's more tired when they're sick.

"You're sleeping too much," people said. "Sleep less and you'll feel better." It did no good to say, "No. I won't." I had two choices: feel like a total, barely functional zombie, or be functional.

Mostly, people said, "Lose weight and exercise more. Then you'll feel better." I got tired of explaining that I felt exactly the same when I was 12 years old and (literally) half my current weight (and still my current height). I fell asleep in high school classes (especially right after lunch) more often than I wanted to count. At 18, I once fell asleep at my office job. I was doing better as an adult, despite being heavier, because I no longer saw any possible benefit in pushing until I'm totally exhausted.

"It's just a habit," people said. "Train yourself to expect less sleep, and you'll be fine." Ugh. This, again, ignored the fact that, as a parent, I've had to function for weeks (and months) straight on very little, constantly interrupted sleep. I know what it feels like, and doing that for long periods is dangerous. It can be done, but it's not good for anybody.

It took me years to convince my husband that when we go on vacation, I can do early mornings OR late nights, not both. If I push too hard, I will get sick. "Illness is caused by germs," he'd say. "There's no way this will make you sick." He's one of those people who wants to be the first one in Disneyland for Magic Morning hours, and the last to leave Main Street an hour after the park has officially closed. I can't do that.

"You're imagining things. You think you'll get sick, so you do," people said. I'm not a hysteric or an attention seeker. I've actually had to go to an urgent care facility while on vacation on more than one occasion. I'd SO much rather be doing something else, but I can't. Attending a friend's wedding in Palm Springs in August one year, I contracted such a vicious case of bronchitis that it took 3 full courses of antibiotics to kill, and left me with permanent lung damage. Six years later, in Florida in April, my newly acquired asthma (thank you, aforementioned lung damage) left me unable to breathe and scrambling to procure an inhaler.

We learned to take it easy. Still, a vacation (which I truly enjoy) usually meant that I'd be sick, while still traveling or after returning home. Sometimes, my husband and kids would leave me in a hotel room to sleep all day one day, so that I could resume functioning for the rest of the trip.

Seven weeks after my surgery, we were taking a trip that we'd planned for over a year. It meant hotels in 4 different cities over 12 days, a lot of driving, amusement parks, museums, the zoo, the aquarium, family visits, the beach and the wild animal park, all with my entire immediate family of 7. We weren't sure how I'd feel, so I was prepared to take a day off if I needed it. I didn't.

One of the biggest surprises after the surgery was how I felt. "You'll be completely miserable for about 6 weeks," the surgeon had told me. "Then it'll slowly start to get better." I never got to completely miserable. I went from mildly uncomfortable straight up to better than I'd ever felt. Five days after surgery, I was shooting portraits.

I started waking up five to ten minutes before my alarm went off - not once or twice, but regularly. Once, I woke up a full hour before my alarm. I lay there thinking, "Is it just my bladder waking me up? Am I still tired?" Nope. So, up I got, and on with my day. It's happened again. Days when I could sleep in had me waking up and ready to go 45 minutes before my alarm went off.

I rarely needed a nap. I think I took maybe 3 naps in almost 3 months. That's unheard of.

We went through the entire twelve day trip, and I felt fabulous. I didn't sleep in, I didn't get sick, my asthma stayed quiet. I came home thinking, "Oh, it'll hit now." I had a full schedule of rehearsals, photos to shoot, early morning classes to take my son to, and I still felt great.

My husband couldn't get over it. "That trip would have killed you before! You'd be bedridden for days!" I know! It was amazing.

I also - and this was just as amazing - fell asleep within minutes of going to bed. One of the worst parts of the constant exhaustion I'm used to is that it's perversely accompanied by insomnia. It could take 3 or 4 hours to fall asleep, despite being so tired I was nearly in tears. ("It's because you actually sleep too much," people would say. I will not describe how annoying I found that attitude.) Too often, I resorted to Tylenol PM in an effort to fall asleep. Now, I lay down and actually fell asleep! It was amazing and exciting.

Another "normal for me" problem that I've had my whole like is hypoglycemia - low blood sugar. It runs in my family. I never associated it with my thyroid, or considered it "curable."

When you're hypoglycemic, you need to eat regularly, preferably high protein meals. Skipping meals, especially breakfast, can be disastrous. I have scars on my shoulder from the time I passed out, at age 17, while cooking eggs for breakfast and fell against the burner on the way down. Pregnant with my first child at 20, I passed out at the top of a flight of stairs. I learned to make breakfast my first priority.

When you're fat, and I am, people are very skeptical when you tell them what you eat, when and why. We were friends with the manager of a local pizza place, and he noticed my food one day while we had lunch at their buffet. I had 2 slices of pizza and a salad. "Are you on a diet?" he asked. "Are you trying to be good?" No. That's how I eat. If I felt like having half a pizza, I would. I not only don't feel like it, I'm pretty sure I'd throw up if I piled my plate the way some patrons do. That messes with people's heads. They're sure I do a lot of secret eating. I don't. I don't do a lot of secret anything.

I read weight loss stories where people tell how they'd down a whole pizza and a quart of ice cream, then order Chinese takeout before they changed their ways and lost weight and I think, "Holy cow!" I don't care how big or small you are, eating like that is a terrible idea. It's also nothing that I ever did. I don't binge; I don't starve.

When you tell people that you have a medical condition that requires you to eat regularly, or to stop for a snack during the afternoon, nobody thinks anything of it if you're skinny. If you're fat, they say things about "justification" and "denial" (in private if not to your face). It's SO aggravating.

Again, I'm not imagining these issues. Again, low blood sugar runs in the family.

I know the symptoms. If I don't eat correctly (read: regularly and high protein), first I'll feel nauseated and headachy. If I don't fix it, then I start getting disoriented, shaky and weak. If, heaven forbid, I don't fix it then, my ears will start to ring and the color will drain out of everything, leaving it black and white. If I don't get some juice or something else that absorbs quickly into my system at that point, I faint. The rest of my family gets similar symptoms. My son's vision has never gone totally black and white; he gets a pulsing black ring around the edges of his vision.

After the surgery, I've had no blood sugar issues. I once had a granola bar for breakfast and ate nothing else until 2 in the afternoon, and had no problems. It wasn't even a protein bar or a nut bar, just a plain old Quaker Oat bar barely bigger than a cigar. That, again, is unheard of. I didn't even get a headache.

I went in to my surgeon for a checkup after I came home from vacation. Since my thyroid is gone, I'll be taking daily medication for the rest of my life. He started me on a very generic "adult dose," and at my last checkup told me that he'd be increasing the dosage by 25 milligrams. "You should start to feel a lot better, and have a lot more energy. You should also start to lose some weight," he said. Feel better? More energy? That was almost inconceivable; I'd surely be able to leap tall buildings in a single bound.

Soon after switching the dosage, I started to feel run down. I wondered if I was finally getting a cold. Usually, by the end of November, as it is now, I've had two or three ugly ones. I haven't had any this fall.

Nope. Soon I was exhausted, all the time, having blood sugar issues, facing insomnia ... in short, feeling like I did before the surgery.

Worse, I developed one of the symptoms that they had warned me I would develop if I left my thyroid issues untreated - irregular heartbeat. I'll be lying down, trying to sleep, and my heart will start speeding up. Then, instead of a normal "bum bum, bum bum" rhythm, my heart would go, "bum bum, bum bum, bum BAM!, bum bum, bum BAM!" It wasn't even predictable, happening, say, every fourth beat. It happened at random, first after 2 or 3 beats, then after 10 or 12.

After spending almost 2 months feeling amazing, this retreat back into pre-op body chemistry is deeply disturbing. Having heart issues is alarming, so I immediately phoned my surgeon's office and asked to go back to the old dosage. I told them exactly why.

When I say "them," I mean voicemail. I love my surgeon and cannot stand how his office operates. It is harder to get a human being on the phone than it is to win the lottery. I called twice; the pharmacy I use called twice. I finally, days later, got a message on my answering machine from the nurse: "Go get blood work done. We can't change your dose until we know what your blood work says. It will let us know if you need a change."

The worst part of this is that, if they'd actually looked at my chart, they would have seen that my blood work was "normal" BEFORE the surgery. I spent literally 20 years with doctors saying, "Your thyroid is fine. Your blood work is normal." It wasn't until a sharp eyed PA became alarmed by the growths all over my thyroid and referred me to a surgeon that someone said, "Obviously this is not normal!" My surgeon was dismissive of my pre-op blood work, pointing out the gargantuan swelling and unnatural nodules all over my thyroid as being far greater indicators of whether or not something is wrong.

And he was right.

So I phoned the nurse's voicemail back and reminded her of this. Despite assurances by her recorded voice that, "I will get back to you by the end of the day," she did not call back.

Did I mention that I'm experiencing irregular heartbeats? This is not good! I'm shaving my pills down with clippers, trying in vain to cut back my own dose.

Tomorrow, I'm phoning the surgeon's office and simply asking for an appointment to discuss "post-op discomfort or complications." I will not shut up until I get an appointment. I will speak directly to the surgeon, face to face, in an effort to go back to the medication that actually worked for me. And frankly, I will not subject my already angry veins to more blood work unless I have to.

I want the feeling of those two months back! Who knew that "normal" was supposed to feel that good?

Illness Part 3: The Scar

It's a good thing I'm not terribly sensitive about my appearance.

I knew that surgery to my throat would mean a visible scar. I was a tiny bit worried about it, but not too much. I have all kinds of scars, surgical and otherwise, and they don't bother me. I knew from a previous surgery that this particular surgeon left small scars that faded easily, so that was a comfort, as well.

A week or so after I left the hospital, I ran into a friend while out shopping. She asked how I was doing, and noticed a healing wound. "Did they do it laparascopically?" she asked, noticing that the wound seemed small.

"No. That's the surgical drain," I said. Tilting my head back, I said, "This is the scar." She gasped and visibly recoiled. "OH MY GOSH," she said.

I've gotten that reaction more than once. My oldest daughter squirmed, shook her hands and said, "EW EW EW!" the first time she saw it. My husband opined that I look as if "you've had surgery by Sweeney Todd." (A few years ago, only theater geeks would have understood the reference, but now all Johnny Depp fans get it as well.)

My family noticed, as did I, that the other patients on my floor who'd had similar surgeries had simple bandages across their throats, right in the hollow. Sometimes they had a single cotton ball with a strip of tape. I had square of gauze about six inches square across my neck, with bloody rubber tubing snaking out from underneath.

Before I had my grossly enlarged, nodule ridden thyroid removed, the surgeon came into my hospital room and marked my neck right along the natural crease, so he'd know where to cut. The actual cut, about four inches long, is therefore pretty hard to see.

The opening for the drain actually annoys me more. The tubing was held in place by a stitch on either side. When the nurse removed it, she warned me, repeatedly over a few hours, that it would "really hurt." "This has a really wide mouth that flares out under the skin," she said. She had me take deep breaths and brace myself; I was anticipating some real pain. I hardly felt anything.

The cut itself was almost an inch long. The nurse put a SteriStrip over it to hold it closed. She also clipped the stitches across my throat and SteriStripped it before I went home.

("Are you going to wear a scarf or something over that when you go out in public?" my mother wanted to know. "Nope," I said. For one thing, it was August. For another, I think that the general public can handle evidence of surgery. If they can't, oh, well.)

The surgery site appeared to heal well. The drain, however, did not. Ten days after the surgery, I sent this note to two best friends:

Reason 378 Why The Office Staff at My Surgeon's Office Drives Me Crazy

So. My incision is healing nicely, with what looks to be a thin scar, tucked into the fold of my neck. This is what I expected, based on the last time he operated on me and pre op conversations.

The drain opening (I have a drain in my neck!) is another story. When the nurse took out the tubing, she just made one of the SteriStrips for my neck incision a bit longer than the others so it would cover the hole and, in theory, seal it.

It's almost an inch long, and it's not sealing up. TMI alert! Graphic bodily info coming! They told me that if it became obviously infected - smelled bad, had pus, was inflamed and/or draining - I should call them. It hasn't done any of those things, but the SteriStrip was still across it the 2nd day out of the hospital when I noticed that the gap was widening. In the gap (warning! warning!) it looked yellow and shiny. The yellow shininess didn't rub off when I cleaned with gauze, so it's a solid. It's also not a scab. I have come to the conclusion that I'm looking at the subcutaneous fat. The gap is getting wider and wider; it's now about an 1/8 to 1/4 of an inch wide.

I change the bandage twice a day, because it looks too gross to just leave open. I finally decide to call the surgeon's office - always a treat involving phone tag - to see if I can come in and maybe get a stitch or two put in.

Nurse: It'll close on its own.

Me: It's not closing. That's the problem.

Nurse: But it will close. It won't stay open forever.

Me: It's been 10 days. It's getting wider and wider. Do you think that after 10 days those two pieces of skin will reach out and grab onto each other somehow?

Nurse: It heals from the inside out. It'll start healing on the inside. You can put a bandage on it if you want.

Me: It's never been WITHOUT a bandage. They SteriStripped it in the hospital, and I've had a bandage on it ever since that came off.

Nurse: He generally doesn't put stitches in those.

Me: Generally, they heal. This one isn't closing. Do you think perhaps I could have the doctor look at it to see if he needs to treat it?

Nurse: He'll look at it at your follow up appointment.

I finally browbeat her into giving me an appointment tomorrow. I also asked for the results of the biopsy, and pointed out that I'd called on Monday to ask for those results, and hadn't gotten a call back.

Nurse: What labs? I don't see that we have any labs here.

Me: THE BIOPSY. Of the thyroid that was REMOVED last week.

(I mean, I'm just waiting here to find out if I have cancer. No big deal. Don't trouble yourself.)

Nurse: Oh! Well, I'll leave a note for the doctor to call you.

Never mind. I'll see him tomorrow.

                I like my surgeon, but his office staff makes me almost want to resort to violence.

               

                The next day, the surgeon was at least clear and brief. "If I put stitches in that, it'll seal in the infection and it'll get worse." He recommended slathering it in antibiotic cream twice a day, which I was already.

                It eventually did heal, but it's very noticeable. It's lumpy, and much wider than the actual surgery site. Maybe I should be glad that people notice it and not the big one.

                The biopsy was negative, by the way. No cancer. The chance was small, but it was there. It was good news.

                One of my friends is a medical professional, and every time he sees me he handles my throat. "Look at that! It looks great! The swelling is going down!" he says. That makes me happy, too.