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?