Knee Deep

We were visiting my oldest daughter's house, getting ready for church on a Sunday morning. My youngest walked out of the bedroom in her church outfit, and her older sister made a noise of alarm - "AAHHHH!" She frequently despairs when faced with the fashion choices of her family, but I couldn't see anything wrong with the way her sister looked. I mean, she was dressed for church, not even in her "grubbies."

"What?" I asked.

"Her knees!"

Well, OK, the dress hit above her knees, but she wasn't flashing. Thinking that she was worried that the dress was too short, I said, "She's wearing leggings."

"NO! They bend backwards!" - in a tone of horror.

I sometimes wonder if my family has been paying attention for, well, pretty much their whole lives. Her sister was a teen - had she never looked at her legs before?

"Yeah, they do. She has my knees. Haven't you noticed?"

My daughter and I both have knees that bow backwards - our legs are shaped like parentheses. In order to have them look "straight," we have to bend our knees slightly. My daughter's might look a bit more obvious because her legs dimple over her knees, but the curve is virtually identical. How had my oldest never noticed this? On either of us?

"Can't she do something about that?"

"Well, we could try a complete knee replacement, but I'm not sure that would work. Maybe we'll find out when we're old."

My oldest is a very sweet, well intentioned human being. But when something offends her sense of order, she gets rattled, and how things look is very important to her.

Of course, my youngest and I have a diferent frame of reference. We have to make these knees work. They not only bow backward, but inward - we're "knock kneed."

Yes, our legs look like the letter X from behind, and the letter C from the side.

You know that walk that women do, where they cross one foot in front of the other as they step, and it looks elegant? Yeah; we will never be able to do that.

As a teen, I knew that I had "bad knees," the kind that hurt when a storm was coming, and might seize up or collapse while I was roller skating. Falling on my right knee (off of a horse) when I was 13 didn't help. I sounded (and often felt) middle aged, but what are you gonna do? You have the body you were born with.

I never understood it when people said - and they sometimes did, as my oldest daughter did again, "How can you stand that?" Easy; there's no choice. What sense would it make going through life being disgusted or aghast, by your own body, every single day? That would be far more miserable than my knees made me.

After I had surgery on my feet, I had to learn to walk again, and everything felt wrong. Plus, putting my feet where they were "supposed" to be made my knees literally smack into each other. I watched my daughter walk; her knees glide past each other, always touching but never smacking. I couldn't figure out how to make my feet and knees and everything else work properly. ("These Feet Were Made For Walking")

I pretty well have it figured out now, I think. I suspect that I've taken on a "cowboy who's been too long in the saddle" wide legged walk, but that doesn't bother me.

Howdy, Partner.

I'm walkin' here!

These Feet Were Made For Walkin'

"Point your feet in the direction you want to go, and make sure that your toes are the last thing to leave the ground." My son tried to coach me on how to walk.

Walking sounds so easy. I certainly never anticipated having any trouble walking.

Ironically, the difficulty came after surgery to repair the bone structure in my feet. I'd known that they had problems since the bunions appeared while my age was still in single digits. My big toes turned sharply toward the other toes. My big toe toenail ended up almost dead center of the foot, and the bone in the joint jutted outward in the opposite direction. The other toes were crowded. On my left foot, the big toe actually overlapped the other toes. Plus, it was turned at a 45 degree angle, with the side of the toe facing downward, and the nail facing the other toes.

Naturally, it was hard to find shoes that were wide enough. Having anything even a little tight across the bunions caused sharp pain through the whole foot, getting worse as time passed. Sandal straps were the worst offenders. I could only wear sandals if the knob of bone jutted out between the straps. High heels were horrific.

I never really understood it when people would insist that you should balance on the balls of your feet, because I couldn't. I assumed that it was just bad balance, because if I tried, I did not become stable, I became wobbly and unstable. I couldn't tiptoe more than a few steps, either. Still, I was never going to be an athlete or a dancer, so I didn't think too much about it. Some people are awkward.

I remember asking, as a child, why we had these big, long feet anyway, because the entire front half seemed like a waste. I was assured that without the front half of the foot, humans couldn't walk or balance, but that made no sense to me. I wasn't using mine, and I was walking upright. ("Of course you're using it!" people said.)

My perception was further complicated by having to rock my weight onto my left foot when I was standing. If I tried to put equal weight on my feet, I again got very wobbly and likely to fall over. This was explained in junior high school, when I was found to have scoliosis and uneven hips. Having one hip higher meant one leg was shorter, so the weight had to rest mostly on the shorter leg, with the other one just providing balance. This is also why I tend to stand with one leg out to the side. (Think of how you balance on any chair with uneven legs.)

Still, people kept telling me that I was mistaken when I said that I couldn't have decent balance with equally distributed weight. Or, like my husband, they encouraged me to get shoe lifts for the short side; I figured that would just transfer the strain to my hips and back. Besides, I functioned fine if left to my own devices.

 Of course, my feet hurt more than was convenient. Still, that was to be expected, because something was wrong with them. I gritted my teeth when I'd mention pain and someone would immediately say, "Lose weight and exercise!" When I was 12 years old, 5 foot 8 and 125 pounds, they hurt, in the same ways and at the same times as they did decades later.

I became the queen of comfortable shoes, after spending my younger years trying to wear pretty ones.

When I was 28, with great insurance, I finally went to see a podiatrist about getting my feet fixed. My husband pushed me to go, after repeatedly watching me try on shoe after shoe that wouldn't fit. "There's a lot more going on in here than bunions," the doctor said.

He ran a single finger up the back of my ankles. "Does this hurt?"

"Yes."

"Mmm hmm," he said. He ran the finger up the back of my calves. "Does this hurt?"

"Yes."

I was surprised. If you had asked me if those places hurt without him touching them, I would have said "no." But he seemed to have an uncanny ability to create pain with just a touch of his index finger, zeroing in on sore spots I didn't know were there.

After several more simple touches and "How about this?" queries, all answered with "Yes," he had me stand on the x-ray machine. "I thought so," he said.

Among the revelations to me was a diagnosis of collapsed arches. I stared at my foot, looking at its lovely arch. "But I can see the arch, see the curve in my foot."

"Yes, but every time you step, it does this," he said, cupping his hand and then flattening it out. "Every step overextends your bone structure, and stretches the tendons and ligaments over the bone in your heel. That's why these," rubbing the back of my ankle and foot again, "hurt. It pulls everything out of place with every step. Pretty soon, everything is fatigued and swelling. If it's severe enough, eventually it can tear the muscles."

Holy cow; who knew?

I suddenly remembered my dad telling me that men with "flat feet" were excused from military service during the draft, because they couldn't pass the physical, and were unable to march over distances.

The bad news - fixing it would mean "a minimum of four to six weeks off your feet." I had three kids - I had a one year old. I did not have the time or capability to take a month off. My husband went to work at 3 a.m.; how would I do anything? Plus, my house is two stories; what about stairs?

He advised me to buy over the counter arch supports, and put them in my shoes. "After the surgery, you'll need custom supports, but there's no sense getting them now, before it's repaired."

I still thought that he had it wrong. This just sounded too odd. Arch supports were made of foam and plastic, and they were all of 1/4 to 1/2 inch thick - how could that little difference change anything? How could these thin little $5 items make any difference?

So, I bought some flimsy little Dr. Scholl's arch supports and put them in my flimsy canvas shoes before we headed to Disneyland.

Oh, ye of little faith.

It was like the heavens opened and angels sang. I love Disneyland, but it usually left me limping. By evening, I would be in almost blinding amounts of pain, wondering if I could make it back to the hotel room. But with these ridiculous slivers of foam, it didn't hurt. The rest of my body tired out before my feet did, something that had never, ever happened before. I became convinced that the podiatrist was a genius.

I began refusing to wear anything without arch supports. I started living in athletic shoes. Sure, they looked clunky and way too casual, but who cared? They were miraculous. I would have worn them with my dresses to church if I didn't think it would horrify my husband. Cute little ballet flats no longer looked quite so appealing. Nothing had ever mitigated the pain before; now that I knew that it was possible, I was not going to give it up.

I wasn't pain free, just agony free. Pain still happened - it just happened a lot less, and a lot less severely. Having to spend a day - or even an evening - in dress shoes still had me limping, not only that day but through the next, too. And this is with dress shoes that are plain and frankly masculine. Every now and then I can find decent Mary Janes, but usually, I'm in loafers if I have to dress up.

I photograph weddings for a living, and it's so aggravating to me that, in order to be looked at as a competent professional, I have to wear shoes that honestly make me less effective.

Years later, a PA tried to tell me that arch supports were bad for people with collapsed arches. "It'll just feel like walking on a rock." Maybe to some, but I'm not giving mine up!

Anyway, I was in my late 40s before I had the time, money and capability to have the surgery. Discovering that many of the bones in each of my feet were physically incapable of supporting weight was surprising. "Apparently, almost half of the bones in my foot were not load bearing, even though they were designed to be. My podiatrist took hold of my foot and folded it lengthwise, flapping it like a wing. "See that?" he said. "It's not supposed to do that." ("Counting Down," Dec. 2013)

The surgery recovery period kicked my butt, ("Handicapped Access," Dec. 2014) but I was sure that as soon as I was out of the cast, everything would be fabulous. I neglected to really ask myself what building new muscle memory would be like.

After nine weeks in a cast, even the muscles I was used to using were out of practice. The bigger problem was, I couldn't walk the way I was used to. I couldn't even stand the way I was used to. If I tried, my muscles screamed and my ankle burned. I was wobbly. Plus, my foot felt as though it had had hinges installed. I was used to picking up and putting down my foot pretty much as a whole, but suddenly, it wanted to bend. It was really puzzling.

Nothing was instinctive any more. My right foot had not yet been operated on and felt normal, but my left felt entirely different.

I tried to describe its functioning to my husband. "It's like it hits at the heel, then the whole foot rolls forward, and it pushes off from the toes."

He gave me a look. "Congratulations," he said drily. "That's called walking."

"Hey, I've been walking for more than 40 years, and it's never done that before!"

Muscles that had been unused for literally my entire life now screamed at me, as well, as they suddenly had to work. Everything was sore, all the time. Plus, I had to really think every time I stepped. If I got tired or distracted, I rolled to the outside, and my ankle burned. I'm not sure exactly what the support in there is made out of, but I'm assuming it's supposed to help keep me from crushing things.

I'd never been aware of rocking my weight to the outside edge of my foot, even though the soles of my shoes wore out on the outside edge, and stayed pristine on the opposite edge. Now, I very exaggeratedly rolled my weight to the inside of my foot, and tried to balance the weight on the ball of the foot, but my shoes (and the doctor) said I was still rolling to the outside.

After I had the second foot operated on, nothing felt recognizable any more.

Even two years later, my toes still surprise me. Trying to put any weight on the toes, especially the big toe, had always crunched my toes tightly together; it goes without saying that it was unstable, and hurt. Now, putting weight on the toes causes them to SPREAD. I have never, ever experienced this! My toes are misshapen from decades of crowding, and I can't believe that they spread apart now - or that the more weight they take, the farther they spread. It's amazing.

I expected this all to be easy, but I was having to actively think about how I put my feet down, pick them up, do anything, two years later. I'm doing better, continually, but it's slow. My chiropractor, working on knee pain, said, "Of course your knee hurts. You don't know how to stand on your feet." UGH!

Sometimes, I'd tackle largish goals. In Hawaii with my family, I decided to walk three and a half miles, over uneven terrain. I was slow, but I made it. Back at our rental house, I again took ruthless advantage of the fact that my son is in massage therapy school. "Can you work on my knee?" It didn't hurt in any way that made sense. It hurt right across the top of my knee, right at the connection with my thigh.

He'd press certain muscles. "Does that hurt?" After a series of answers like, "No," and, "A little," he pressed on the inside of my knee, and I shrieked like a Banshee.

Trying to discover what I was doing wrong, he asked me to walk. After watching me, he said, "Look down at your feet." I looked down. I guessed. I guessed some more. I could not figure out what was wrong. He had to point it out to me, with a sigh. "Your foot is turned sideways." Well - yeah. Is that a problem? It's only about 25 degrees. And I'm going forward.

Apparently, this is an issue.

I'm trying to correct it, but pointing my foot forward feels like I'm twisting the whole leg. Plus, with knees that bow inward and backward, it's difficult to point my leg forward without my knees hitting each other. Is walking supposed to be this complicated?

My reality is further skewed by decades of apparently unreliable perception. I recently went back to my son for help. "I must be doing something new wrong. It's really weird. Standing still for a long time hurts more than walking."

"That's actually really normal."

"IT IS? How can that be?" I mean, my whole life, FIVE DECADES, walking has been actual work, and standing just, well, standing. Not working as hard. Of course things hurt more when they're working. Right?

Apparently, wrong. Standing is more stress. Who knew? Not me.

On the other hand - go, me, something is reacting normally!

Sometimes, someone will want me to do something like dance. Are you kidding? I'm still learning to walk!

I finally got those custom inserts, though, and I'm telling you, hallelujah! You can't build new muscle memory if you don't know what to do, or do it consistently. These are helping on both counts. I no longer have to think every time I step.

If I'm in a tunnel, I think I see the proverbial light.

Pain Management

I was deeply overconfident.

I know what to expect, I thought. I was going in for a hysterectomy. I'd had abdominal surgeries before. I've had 3 Cesarean sections and an ectopic pregnancy. I've had bone surgeries, dental surgeries, a three hour surgery to my neck. I understand pain - broken bones, labor, strep throat that hurt so much that I couldn't swallow my own saliva. I've spent 2 1/2 days on a morphine drip. The ectopic pregnancy was the worst pain I've ever had - writhing, thrashing pain that had me wishing that I'd pass out from it.

I've got this, I thought.

I did not have it. I had nothing in my wheelhouse to even prepare me for it.

I'm not a wuss. I actually handle pain quite well. It's not unusual for me to take nothing but Tylenol after a surgery. I tend to wake up in recovery saying, "When can I go home?" I walked through ancient ruins and Disneyland with brand new surgical screws in my feet. I was still unprepared for the first, fierce 24 hours after my hysterectomy.

When I woke up in recovery, I couldn't move or open my eyes. All I knew was that my back hurt, I couldn't breathe, and I wanted my husband. I have a "restricted airway" (read: throat that's smaller than normal), and being intubated creates lots of sticky phlegm, so unless I keep clearing my throat, it closes up and feels as if I can't breathe. (My nose is no help; it's chronically swollen.) I kept clearing my throat and calling for my husband, and someone - I had no idea who, but they seemed to be handling me - kept shushing me and telling me that, "There's no Dan here."

Now, I dislike being the kind of person who tells others how to do their jobs (mostly because I hate being told how to do my job). I'm sure that the recovery nurses have handled more loopy, drugged and irrational patients than I have. But here's how I see it: those who are sick or in pain should be handled the same way that small children and the mentally ill should be. If someone's calling a name, ask who it is. "Is Dan your husband?" If I say "Yes," say, "He'll be here soon." If it turns out that, say, you find out that he's a stalker and I live in fear of him, say, "He can't get in here." The whole point is to comfort, not to panic, the subject. Just telling me that he's not there and I should hush is not comforting.

In fact, it was so panic inducing that I later had trouble with him going to the rest room, because he was out of my sight. This is very uncharacteristic for me, and it is not good. Just a heads up.

Before I could move anything, I became aware of more pains, and things began to make sense. I remembered where I was, and why, and realized that the surgery was over. Someone put something in my mouth - I still don't know if it was just a sip of water or medicine, and I said, "Can't swallow."

"Yes, you can." Well, OK, but not easily.

I tried repeatedly to form coherent thoughts, but full sentences were difficult. "Scoliosis. Back hurts. Need to sit up."

"You can do that later."

"After you get to your room, the bed will be more comfortable."

The back pain is still the worst part of the whole experience. I expected abdominal pain, but it felt like the entire three hour plus surgery had been spent in the worst possible position, and my back screamed.

After they took me to my room - and, thank heaven, my husband was allowed to come with me - the first thing I asked the nurse was, "Can I sit up?" I could. "Can I lean way forward?" Yes, I could. "Can I pull my legs up and lean up like this?"

The best thing my first nurse, Rodger, said to me was, "Well, you're going to just love me, because I'm full of all kinds of 'yes' tonight." Oh, thank heaven.

What I really wanted was to straddle the bed like a horse, or a surfboard, with my legs down either side, then lean all my weight up onto my hands or elbows, but I couldn't quite do that. I was worried about putting my weight on the incision site, but Rodger's "yes" meant that I could. I pitched forward and finally got my back to stop screaming quite so loudly. "Oh, much better. Much better."

Rodger was puzzled. "Your back must have really hurt."

"Scoliosis. Dear heaven. You have no idea."

The problem with hospital beds, beach chairs, recliners - anything made for the comfort of the average person - is that leaning back like that puts pressure on the place in my spine where it kinks to the side, and it makes everything hurt. It also cuts off circulation to my left side. I need to do what causes most people pain, and pitch forward. Sometimes, efforts to make me comfortable will have exactly the opposite effect.

The next three days were all about moving just enough to ease the pain in one part of the body in order to experience some slight relief, but it just transferred the pain to another body part, so soon I'd have to move again. The next 24 hours were a fog of frustration and pain. Every time I started to fall asleep those first few hours, the pulse oxygen monitor - the little clip with the red light that went over my index finger - set off an alarm. Apparently, my breathing slows when I sleep, and the machine shrieked if I dropped below 90% oxygen saturation. (I thought it was overreacting. I never got below 82%.) It also went off if the clip got bumped the tiniest bit off center. More than once, I found myself beating the pulse ox clip against the bed rails, wailing, "Shutupshutupshutupshutup!"

For a while, life condensed down to the 10 minutes between times that I could hit the morphine button. Keeping my eyes open was hard. Sometimes, especially if I already feel bad, any sensory input - sight, sound - will result in an overload similar to motion sickness. You can tell if I'm not feeling well when my communication becomes very staccato. My youngest two kids came to see me, and my youngest daughter kept sharing things that happened that night at youth group, and I'd find myself saying, "Sounds like fun. Now sshh. Too many words." Watching my husband walk across the room caused me to throw up.

Morphine, of course, is notorious for causing nausea and headaches, but I couldn't have oral painkillers until my digestive system started working again. My sinuses felt refrigerated from the oxygen tubes, but removing them made the oxygen monitor shriek.

In general, I hate to be touched when I'm in pain. This is hard for loved ones who try to rub my back or my arm. I tend to bark, "Don't touch me!" I can't stand to have collars ride against my throat, so I left the back of my gown untied and unsnapped. It bothered my husband that it sometimes hung, a la Flashdance, off my shoulders. He'd try to "fix" it, and I'd wrestle the fabric away from him. I'd rather wander topless down the hall than have it ride on my throat. Yeah, good times for everyone.

I try not to be, as my sister calls me, "a curmudgeon." I would hear her voice in my head as I cursed the machinery or the drugs. She'd talked to me just before I went in for surgery. "Remember, they're just trying to keep you alive!" I'm actually a usually reasonable and cooperative patient, and when I know that I won't be, I try to apologize. Having to receive shots in my stomach, I warned the nurse, "I hate to have my tummy touched even when I feel good. I will make weird noises. It's not you, and it doesn't hurt."

Asked if the urine in the catch basin in my bathroom was a normal color, I said, "I'm a woman. I normally see it mixed with water. How the heck would I know what shade it normally is?" By day three, I had a bit of a sense of humor back. My nurse made sure my gown was closed over my rear end, and my response was, "Yeah, everybody'll want one if they see mine." Waiting for me to pass gas - one of those post op milestones that every patient has to hit - I said, "I've spoken to my digestive tract about this. It just isn't listening to me right now." Luckily, my nurse found me amusing.

My nurses and aides were pretty uniformly outstanding. God bless them. My husband offered to take a photo of my last nurse, Sam, and send it to my sister "so she'll be jealous." Young, dark haired and good looking, he was also funny and efficient.

Five days later, I'm home, showering, wearing real clothes and feeling more like a human being. Life is much more pleasant and manageable. I'm stiff, slow and in pain. I'm bruised. Sometimes the abdominal gas feels like a weasel loose inside me. Still, all this is doable. Now I've got this.

After I had my youngest daughter (sixteen years ago) I said to my mother, "I tell myself that I'll never again have to be a patient in a hospital. I know that I'm lying, but it makes me feel better." She humored me. Now I just hope against hope that this was the worst it will ever get.

Because I do NOT want to have to readjust, again, what a 10 on the pain scale feels like. (I use now my friend Steven's swear phrase: "Sweet fancy Moses.")

I won't have to go back to a hospital again, right? I mean, I'm done now, aren't I?

I think I speak for many of us when I say, "I hope so."

Waiting Room Reading

I've been the recipient of a lot of medical care lately. It sounds pretty ominous when I talk about it - I had four different appointments in a week, with 3 different doctors and a lab where I had 9 different tests performed - but it's nothing really scary. A lot of it is stuff like trying to regulate my endocrine system; I've been battling that for years. (Try this drug! Try that drug! Try this new dosage!) One appointment was for muscle relaxant shots in my shoulders. I have mild scoliosis, and the misaligned bones occasionally pinch things, and it hurts. Still, it all adds up and makes me grouchy.

My son said something snarky recently - I forget what - and I said, "Do you really want to upset a woman with diagnosed hormonal imbalances?"

"Why does diagnosed make a difference?" he wanted to know.

"Because I can introduce it as evidence in my defense during my trial for assaulting or murdering you," I said.

"AH!" he replied.

(Disclaimer: That was sarcasm. My son thought it was funny. He does not fear for his safety, and I do not plan to harm him. I hate that I have to point this stuff out, but the Internet is a crazy place full of crazy people, so I feel the need to qualify my statements, lest someone freak out.)

Anyway, frequent office visits means sitting in waiting rooms reading magazines. I really should remember to bring a book. I get stuck reading things I have no real interest in, like golf or fly fishing magazines. Don't get mad - I have nothing against golf or fly fishing, and being outdoors and active is good. I'm just not a golfer or fly fisherman.

On my own time, I don't read anything resembling fashion magazines, and I'm not big on celebrity gossip, so many magazines aimed at people of my gender and/or age don't do it for me, either. I have zero interest in "who wore it best?" or "the hottest trends for the next season!" Consequently, when I get stuck reading these things I'm just freaked out for days by the idea that anybody actually places value on this stuff.

I just saw a magazine article on "celebrities who shouldn't wear sandals," showing us closeup photos of "gross" and "ugly" feet. Are you joking? We're going to mock people's feet? What planet are we on?

Now my podiatrist's concern makes a bit more sense. I recently had the bone structure in both feet rebuilt, and bone screws put in. Surgery means scars. I am OK with this. It's life. The podiatrist, however, kept assuring me that the scars will fade, and if they get raised and ropy, he can trim them down. He even rushed to assure me that my bruised toes, still black and purple a week after surgery, would fade. "And that's normal. It's not like we manhandled you." I couldn't imagine getting freaked out over bruises or scars. Again, this is expected! I finally pointed out that I have scars across my throat - I am so completely not worried about scars on my feet.

This is good, because the nurses said things like, "Wow, those are some gnarly scars." Yes, they are. They're large, raised and purple. Eventually, the purple will fade to red and then normal flesh tone, but that could take a year or two still. I know my skin.

There's a crescent shaped scar on my ankle, as well, from the same operation.

I sincerely cannot bring myself to care that someone else might find my feet "ugly." It is just not a part of my reality. Do people have no actual content to their lives?

My husband sat next to me, trying to concentrate on his phone (probably surfing Facebook or playing Ingress) while he sat with me at the lab, waiting for my name to be called. I was reading a women's magazine and trying to keep my spirits up, despite not wanting to be there. So, I looked for the humor in the situation. I kept calling something out of the magazine to his attention. I'd say, "Look, honey!" and then read some headline like - I swear, this is an actual headline - "Win At Life!"

"I could win at life! It says so!" I said, trying not to laugh out loud. My poor husband grunted and tried not to encourage me.

"Apparently, geometric patterns will give me a 'totally modern vibe,'" I say, practically snorting. He glared at me.

"Look, honey, look! I can find out 'The Secrets to Sexy Legs!'" He grunted again. "Then again, you're not a leg man, " I say.

"And it's a good thing," he responds, "now that you've put that big dent in yours."

Ooh. Touche.' This is a clear "stop talking to me" signal. He's lucky that I'm not touchy, and I laughed. The same operation that rebuilt my foot lengthened my tendon, so I have a scar, about two inches long, on my left calf. It does dent significantly inward, kind of like a big dimple. My worry was that I'd cut it while shaving, but it's been months, and that hasn't happened, so I don't think about it much anymore.

But apparently, it's not sexy.

Sitting in another waiting room days later, without my husband, I kept finding more to laugh at. "Be Your Own Stylist, All Month Long!" Apparently their article will show me how. I contemplate this; I've been dressing myself for years - nay, decades - now. Apparently, I should claim to be my "own stylist" instead of simply feeling that I get dressed unassisted. I should add this job title to my mental list.

An article on some fashion show or other features a photo of apparently stylish pants, and urges me to "Stride like the free spirit that you are!" I worry that laughing out loud in an ob/gyn's waiting room will upset the other patrons.

Another fashion show featured dresses. Here's a direct quote: "You obviously become the focal point of the room when you walk in wearing this."

Does anyone want to be the focal point of the room, I wonder. Then I think back to attending a formal event. As one couple walked in, the woman next to me gasped, "I think I've been upstaged." The newcomer had on a very showy, gold gown, and my companion was not happy about it.

Huh. I guess people do want to be their appearance the center of attention. Again, I can't imagine. Even when I was younger and thinner, all I wanted was to not be wearing the least appropriate thing in the room. Now, I'm pretty sure that I occasionally am wearing something that doesn't fit in; for instance, my husband once mistook my dress shoes for my son in law's. I just no longer care if anyone's upset about it.

The ads were just ludicrous. "With the right lipliner and my sexy (name brand) bra, I won't be easily forgotten." HA HA HA HA! Yeah, that's the secret to being unforgettable! The right bra! HA HA HA!

But they're being serious. Truly. This campaign must work. It's a big, glossy, expensive ad in a big, glossy, expensive magazine.

I learned my lesson. I bought a paperback book to carry.

If you see me chewing my cheeks, with my eyes watering, while I'm in a waiting room, it means that I forgot said book, and I'm reading magazines again. Sorry.

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.

Handicapped Access

I had surgery on my foot, involving bone saws and screws, on November 29. "It's a 4 to 6 week recovery period," the surgeon said.

Of course, my bones didn't get the memo. They refused to regenerate bone cells at a 4 to 6 week rate, so I had gaps in the bones. I had to stay off my feet, putting no weight on the foot, until January 8. That's 7 weeks. Seven. (It would be another two weeks after that before the cast came off.)

Since "no weight" means, well, NO weight on the foot, I spent those seven weeks in a wheelchair.

I'd been optimistically hoping for 4 weeks. I think I handled it fairly well, but boy, was I ready to WALK again.

I think that everyone should have to use a wheelchair for at least a week at some point in their lives. They should have something sharp attached to the bottom of one foot, too, to make sure it doesn't touch the ground. Otherwise, the object lesson is lost, and it's like using a desk chair to scoot around.

There's so many experiences - sleeping in a cast, showering with a shower chair - that you really have to experience to appreciate, but right now, I'm going to discuss one: wheelchair accessibility in public places.

When you're in a chair, suddenly any change in elevation is huge. Steps look like climbing the Alps. Any incline is exhausting (going up), a hazard (going down sharply) or a relief (going down gradually). In the movie theater, after wheeling myself to the restroom, I had to grab the hand rail and use it to haul myself up the incline, hand over hand, to the seating area. Later, when my son pushed my chair up the same hill, he said, "Wow, I never noticed that it went up like this before."

Restrooms, theaters, tables at restaurants - suddenly, you can't just choose any available spot. You have to choose the spots that will allow you access.

My first week in the chair, we went out to eat with visiting relatives. The waitress took away one of the chairs at the table, and I rolled right up, with my knees tucking neatly under the table. That was nice. At home, my legs run into the table leg at our dinner table, and I had to fold the wheelchair legs and let my feet sit on the ground if I was going to use the computer desk; otherwise, I didn't fit under the homemade desk.

Then came the first real obstacle; it was a buffet restaurant. I could run the wheels on my chair or hold my plate, but not both. Hmm. It was also difficult to reach most of the food. Sigh. Still, both of those things were doable with help from my family.

Then, I had to use the restroom. At home, my downstairs bathroom is too small for the chair. I had to park it at the door, hold onto the countertop, then hop 2 or 3 steps to the toilet. From the toilet, I could swing myself into the shower and onto the shower chair. It was pretty easy (aside from the fact that I hate hopping. My balance stinks, for one thing, and I only clear the floor by an inch or so.)

It shouldn't be too big a deal to use the public restroom, I assumed. There's handicapped access stalls, right?

The restroom entrance was difficult to manage. It had a fairly sharp, narrow turn in it. I had to take it carefully, and my chair took up all the room. Nobody could have passed me. The restroom itself was roomier, and I wheeled easily on tile floors down to the single handicapped stall.

I turned and wheeled in, and encountered my first problem. I couldn't turn the chair around, and therefore couldn't close the stall door. If I went back out and wheeled in backwards, so I could close the door, I wouldn't be able to transfer from my chair to the toilet. Hmmm.

I was scrabbling over the back of my chair, trying to close and latch the door, when a woman and her daughter came in. The woman sent her daughter over to help me just as I managed to get it closed by myself. I suppose that restroom designers assume that anyone in a chair will have help, but I don't know why.

I learned to truly appreciate spacious stalls that allowed me to turn my chair around. It had a tight turning radius, but in some stalls, I had only three or so inches on either side of me, and that's not enough. More than once, I'd have to kneel on the chair in order to close a stall door.

Once, the handicapped stall wasn't even big enough for my chair. With the chair almost touching the toilet, I couldn't close the stall door because my chair protruded - a good ten or twelve inches! - out of the stall. I used the restroom anyway; I had to. I hoped no one would walk in while I was there, and they didn't, but I couldn't have done it any differently.

The worst experience was at a movie theater. The handicapped stall was deep enough for me to get my chair in and close the door, but the chair was actually against the front of the toilet by that point. There was no way to turn around and sit properly on the toilet. Even if I'd managed to turn around, I would have had to have my legs up over my chair; it wasn't going to happen. There was no room down the side of the stall to put my legs, even to stand up and turn around. Of course, I had to go too urgently to go find another restroom. I'm lucky that my clothes are stretchy, and I'm not squeamish. I had to drop my pants and underwear down below my knees, then scoot forward to straddle the toilet, facing the back of the stall. My right leg had barely enough room between the toilet and the solid wall, but the left leg, with the cast on it, had to stick under the wall shared with the next stall. I wondered what anyone would think of my straddling the toilet backwards, or my foot sticking into their space, and decided that I didn't care. My bladder was full.

I think that anyone who designs "handicapped access" for public places needs to actually use their facilities, while in a wheelchair. Just because it's ADA compliant doesn't mean that it actually works for someone in a chair.

Counting Down

In 10 days, I should be able to walk again. I haven't walked a single step in almost 5 weeks. Right now, nothing sounds better than being able to go up and down the stairs in my own house.

I have a huge, unwieldy cast on my left foot, up to just below my knee. It's not the kind of cast I expected - plaster or fiberglass. It's a huge steel, padding and Velcro contraption that comes on and off. For the first 3 weeks, the foot and ankle were also wrapped in gauze, stretchy bandages and a thin "sock" covering. The cast strapped on over that. I had to take it off several times a day to put ice packs on my foot, and again to shower, with a waterproof rubber boot over the wrapping.

On the one hand, it's nicer than the fiberglass or plaster cast. I don't have the unbearable itch issues that I hear are unavoidable with those. On the other hand, while there's a half inch steel plate, about 14 inches by 6 inches, under my foot, on top of my foot there's little more than padding and straps to protect the area with broken bones. If something hits it, falls on it, steps on it, the results would be painful and catastrophic, so I'm extremely protective of the entire leg.

And geez, is this thing heavy and awkward! It extends so far past my toes in order to protect my feet. I get it - so many times, I've had that part of the cast whack walls and door frames. I've even had it be stepped on in the movie theater. I know why it's there. Still, imagine having a half inch thick slab of steel on your foot. Even simple stuff like sleeping is awkward. Imagine sleeping in a steel soled snow boot, and you'll have some idea what this is like.

Since the stitches came out at three weeks, I no longer need the rubber shower boot. My family finds my new foot both creepy and fascinating. It's much narrower and straighter than it was before. I can't quite get used to the big toe's nail facing upwards. The incision sites still look pretty gruesome (my middle daughter refuses to look), but that "train track" look will fade. I've had so many stitches; I am not worried about scars on my feet.

I've explained what I've had done so many times in the past few weeks. I'm tired of repeating, but thankful for people's concern.

I had most of the bone structure in my foot rebuilt. I had bunions, collapsed arches, overlapping toes, a big toe turned at a 45 degree angle, bone spurs, and shortened tendons. That's the shortened version. Apparently, almost half of the bones in my foot were not load bearing, even though they were designed to be. My podiatrist took hold of my foot and folded it lengthwise, flapping it like a wing. "See that?" he said. "It's not supposed to do that."

What I'd noticed most, of course, was the pain. I've known that I had bunions since I was 9. The collapsed arches were diagnosed about two decades later, and suddenly so many things about my feet made sense.

I have a lot of small skeletal issues. I had TMJ (joint issues in my jawbone) as a kid. I'm knock kneed, plus my knees bow backwards. Since I was 13 and fell off of a horse onto it, one knee has been noticeably worse than the other. It aches in the cold, and both knees will occasionally collapse when overstressed. I have a mild S curve scoliosis. Its major contributions are making my hips uneven, and therefore one leg longer than the other, and causing muscle pinches in my shoulder that occasionally need treated.

Of course, any time I said, "my feet hurt" or "my back hurts" for most of my life, I'd get patronizing advice to "lose weight and exercise more." Or I'd hear, "Well, so do my mine, but I'm going out dancing anyway." The older I get, the more convinced I become that our parameters are vastly different. What some people call "pain," I call "normal" or "uncomfortable." By the time I say "pain," it's knifing, and I can barely stand to let my feet touch the ground.

I hated, too, being told that my feet would feel better if I went barefoot. "It's healthier! It's the natural state of your foot!"

"But it hurts," I'd say, and thus unleash a lecture on toughening up, or giving it a chance, or something else equally annoying. I need practically orthopedic shoes with astonishingly good arch support before my feet feel better. It's in my bone structure; whether or not the soles of my feet would toughen up was not the point.

Well, let's hope that's past tense now - "needed" orthopedic shoes. I'm hoping that the new bone structure will be fabulous.

I needed bones cut and repositioned, tendons lengthened, screws and rods and a plate installed. The doctor estimated that it would take an hour and a half; it took almost three hours. "Things were a bit more complicated than we thought," he said. "That toe gave me a hard time."

I thought that cutting the bones would be the worst part, but it wasn't. Rotating that big toe really ached. I told him that at my three week checkup, and he said, "We took out and threw away the parts of the bone that hurt. They're gone now." Oh. OK.

The doctor told me that the post-op pain would be about equivalent to a broken bone. I've had those before, so I had some sense of that. The first two days would be agonizing; after that, it would get better. That's about how it worked, too. The first two days, I didn't want anyone to even breathe on me. I couldn't let the bedclothes touch the cast - the weight was too awful. The second day, a towel fell off the rack onto my foot, and you should have heard the noise I made - "AAAAAHHHH!!!!!" How ridiculous is an existence in which a falling towel hurts? Of course, part of that reaction was also shock, and the realization that other, heavier things might fall on me.

Luckily, the only other thing that's fallen on me is a plunger. The cast was off - I was getting out of the shower - so it smarted, but I wasn't terrified. It had been over a month by then.

My worst fear was messing things up while we were still waiting for the ends of the cut bones to grow together and knit. If I ripped out the screws, or tore the healing ligaments, or something else hideous, the damage might be too great to repair. The longer it's been, the more I relax. I haven't been in any significant pain since the first week, and now, in week 5, I think that things are pretty well solidifying in there.

The worst part has been the patience of waiting this long to be able to put any weight on it. I can't put any weight at all on it until I get x-rays in another week and a half, and get the OK. While I'm not in pain, and I'm getting around really well for someone with one working leg, I am practically counting the hours until I can WALK again.

Soon, though, we'll go through the whole thing again, for my right foot. While I want it done, I can't really even think about that right now.

Tick tock!

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 2: Surgery

I woke up clearing my throat, which felt remarkably gooey.

A woman's voice fairly barked at me. "Sharon! Stop. Stop that!" Who was this woman? Why was she in my room? Why couldn't I clear a gummy throat?

As I tried clearing it again, despite being told not to, I remembered. I was in the hospital recovery room. I'd had surgery, surgery on my throat. I'd expected to feel soreness, and maybe a pull from the stitches, but instead I felt a slight twinge on the right side of my throat, soreness across my collarbone, and incredible phlegminess in my throat.

"Phlegm. Feel phlegmy. Can't breathe."

"You can breathe," the woman's voice informed me. "Your oxygen level looks good. You're speaking. You can breathe."

"Phlegm. Feel phlegmy!" This woman, I thought, has never experienced their throat closing from phlegm. Unfortunately, I have, and the only way to deal with it is to cough it up. "Can't breathe."

"Let's sit you up and see if that helps." The head of the bed started moving upward.

I opened my eyes, and kept clearing my throat. "She's starting to panic," the woman said to someone else, asking them to call a third person. "I'm going to give you anti anxiety medication, OK? It should help calm you down."

What will calm me down, I thought, is being able to clear my throat.

"Does that help?" she asked.

"No. Not really."

The man she'd called came and listened to me breathe. "I hear some wheeziness. I'll get some albuterol," he told her.

"I didn't hear any wheezing," she said, rather defensively.

I'm asthmatic and phlegmy, I thought. Anti anxiety meds won't help either of those things.

The man brought over a mask and clamped it over my nose and mouth. After a minute or two, both he and the nurse next to me started asking, "Is that better?"

"No. Not really." They had ceased telling me to stop clearing my throat, which was a good thing, since that was the only thing that actually helped. It did seem that being upright was better than lying flat, too.

I cleared my throat to the point that it felt reasonable. It's probably irritation from the breathing tube, I thought. The surgery was supposed to take a minimum of two hours.

My surgeon came by my bed. The first thing he said to me was, "It was larger than I thought – much larger. I had to dig down behind your collarbone." I nodded. I'd expected that from the soreness; in fact, I expected to bruise. Still, my second thought was, "LARGER? How could it be any larger?" It was already apparently The Gland That Ate Cleveland. In my surgeon's office prior to surgery, he'd told me that I had "a minimum of 50 times the normal mass" in my neck. How much bigger could it be?

My surgeon had allowed twice the usual time for a thyroidectomy, but it turns out that I took about an hour longer than predicted anyway. "Are you in the Guinness Book?" people tease me. "Is it on display in a jar somewhere?" If it is, and my surgeon is a keynote speaker at some conference, I don't think I want to know.

My neck itself wasn't sore, as I thought it would be, but there was a pull on the right side when I moved or turned. It turned out to be the surgical drain, a piece of clear tubing extending down to the little collection jar housed in the pocket of my gown, a different gown than I'd had on when I went into surgery. I'd noticed that my pre-surgery gown had a large absorbent pad across the chest; it reminded me of a feminine pad. I was sure that the gown was now too gory to wear. My new gown was fabric, whereas the old one was paper. I didn't mind looking at the tubing, despite its being filled with blood, but I did find the concept of a surgical drain creepy. I'd move and it would pull, and I'd find myself thinking, "I have a drain in my neck!"

My family was waiting for me when they wheeled me out. My daughter saw me going down the hall and said, "Dad, I think that's Mom." I tried to call her name – "Terry Anne!" – and realized that I couldn't raise my voice. The scratchy, growly voice I had apparently only had one volume.

One of the beauties of family is that they know you. They stayed for about half an hour, long enough to be sure that I was lucid, in no pain, and cheerful enough, and then they left. My mother had said to me that morning, "You know that I'm not coming to visit, right?" I'd had to turn down the offer of a friend to sleep in my room with me. When I'm sick or in pain, I want to be alone. My entire plan for the hospital was to sleep as much as is humanly possible. My family knew that solitude was deeply appreciated.

"You think you're going to be able to sleep?" a nurse teased me. "We're going to keep waking you up. We're not going to leave you alone." I knew that, but I planned to try, anyway. I'd brought my favorite hand stitched quilt and a pair of earplugs. My doctor had promised only one night in the hospital, and I intended to hold him to it.

It's hard to sleep when you have that number of tubes and monitors. On my right arm, there was an IV. On my left was an automatic blood pressure cuff that went off roughly every half hour, and a blood oxygen monitor. On my legs were compression stockings and leg wraps that inflated and deflated every two minutes, left leg, right leg, left, right. At first, it's almost like a massage, and then it gets really irritating. Plus, I had a huge, six inch square bandage on my neck, and the tubing (I have a drain in my neck!) snaking out from underneath it. Trying to sleep was interesting, but it was my top priority.

My adorably perky nurse wrote my schedule on the wipe off board on the wall. It said, "breathe deeply, rest, walk," with little boxes to check off when I accomplished something. That was a schedule I can handle.

About 9:30 that night, I phoned my house to share my latest accomplishment." I went to the bathroom by myself!" I told my 24 year old daughter in my raspy, post operative voice.

"That's greeeeaaat, Mom," she said, in an indulgent voice that said she was wondering how many drugs were still in my system. Hey, when you've been cut open, spent hours on the operating table, have a drain in your neck and are surrounded by whirring, beeping machinery, you celebrate every small victory.

After several hours, I resisted ripping everything but the IV out by myself and called the nurse. "Can I get all this stuff off?" I asked.

"Well, it might have to go back on later," she said, but they all came off. Relief! I actually got to sleep for about 3 hours at a time.

I left the next day, relieved to be on the way home to my own bed, and to be able to go to the bathroom without dragging my IV pole with me.

Friends ask me about a diagnosis. "Cushing's? Grave's?" "Why did this happen? What caused it?" my big sister wanted to know. The truth is, I have no diagnosis yet.  Now comes the work of seeing a specialist, regulating the medication I'll be on for the rest of my life, and figuring out my new normal. I'm not sure I'll get a diagnosis.

"You'll be miserable for a while, and then you'll start an upswing," the surgeon told me before the operation. I never actually got to miserable, which is exciting. I think it bodes well.