366 Days. Speed.

Traveling at the speed of sound

I don’t just have one rare disease.  I have the divine gift of two.  Thank you, Jesus.

I have adrenal insufficiency, a disease that about 1 in every 100,000 people get.  Other people who play with those kinds of odds win the lottery.

The disease occurs when adrenal glands (just above the kidneys) don’t produce enough cortisol. Cortisol performs vital functions of the body, from maintaining adequate blood pressure, to slowing inflammation, to balancing insulin response, to regulating metabolism of protein, carbs, and fats.

We hear a great deal in the media about having too much cortisol in the body, which can cause a large belly and a host of other problems.  The body must maintain a delicate balance of hormones indeed since, while high cortisol levels can be dangerous and lead to cardiac problems, low cortisol levels also can be fatal, and quickly.

Before I knew about my cortisol issues, I could not get out of bed.  I would wake myself by alarm, but it was like awaking from a coma.  I always woke up relatively early in the morning. Even though I don’t have an official job, I work for a very difficult boss:  myself.  I’m the worst task master/mistress of them all.  So I can never call in sick.  I had breakfast and then while I still had the oatmeal bowl in hand, fell asleep, drooling on my chest and dozing for hours, only waking up if something particularly loud happened on TV.  I knew something was wrong, since I had already had nine or ten hours of sleep while normal people slept.

Several doctors had told me nothing was wrong; it was just pain or my medication that was making me tired, or my EDS.  Finally, though, when my leg was infected, my brilliant infectious disease doctor (Dr. William Furlong at Virginia Hospital Center) suggested a test of my cortisol level.  It was 0.2 (normal range is 6-23).  It seems that I was uncomfortably close to Acute Adrenal Crisis, which sends a person into shock; one can die easily in this condition.  For that reason, I wear a medical alert bracelet so that it is clear in an emergency that my body needs a jolt of hydrocortisone (something that a normal body produces in a crisis that mine does not).

I consulted a fantastic endocrinologist this week.  If you need one, I recommend Dr. Jason Wexler, who practices at Washington Hospital Center.  I wanted to ask him about the hydrocortisone I have to take for my condition.  Truthfully, it is speed — with some side effects one would expect, and some unexpected ones as well.  For example, the jitteriness is terrible (shaky hands, etc.); it’s awful after three p.m. when the crash comes.  Predictable as well are mood swings — the higher the dose, the more labile the emotions.  But unlike speed, it makes a person feel hungry, and by hungry, I mean gnaw off the table leg and eat the baby famished.  I gained 19 pounds the first few weeks I took the meds (at a higher dose than I am on now).  I have to stick to a 1000-1100 calorie/day diet so that I do not gain weight.  The most unseemly side effects are that #1, it can cause the skin to be extremely fragile, and #2 it can cause aneurysms to form and rupture.

Well, hell.  That’s just no fair to someone like me.  And since I have taken the medicine, I have had four skin ruptures on my legs.  It makes a girl panic just a bit, then, about the aneurysm situation.

I was worried that I was on the wrong medication (a number of steroids are available to treat my condition.  However, Dr. Wexler did a great job of explaining the way each of the steroids is metabolized, and in this way he convinced me that hydrocortisone is the best of them, since it leaves the body quickly and is least likely to have those skin and blood vessel aftereffects. That’s the best we can hope for, since it is a life-or-death medication.

Another good idea Dr. Wexler had for me had to do with my one-a-day problem.

I can only schedule one activity per day because that is all I can tolerate without being fatigued.  He explained that the dose of medication I am taking is ⅔ the strength he would give for a person of my stature.  So, I could have a few different options.  One would be to add back 5 mg.  (I don’t want to do that because I will almost certainly gain weight.)  The other idea, though, would be to add back ½ of a 5 mg pill in the late afternoon on a day when I do extra things, as a kind of a jolt.  I had thought of trying that before, but I had assumed that it would be a drain on the body and dismissed the idea.

So, I have tried it three times.  The first time I did it, I didn’t have a huge day, but I did run one extra errand.  Having the extra jolt worked, and it didn’t throw me off the next day, when I returned to the lower dose.  Success.  However, when I tried it this Friday I had different results.  I had lunch out, and then had dinner out, a very big day.  Not only that, but going to dinner with friends was a long haul on its own merit.  We went shopping at the Yes! Organic Market right next door to the restaurant after eating, which was fun.  I ended up buying two bagfuls of stuff, and then I had to carry them a block away to the car — way too much for me.  I was in terrible shape by the time I got to the car.

I was sick all night.  I think it was a combined misery of: too much in one day, too much walking, too many heavy things to carry, perhaps some food that I was allergic to.  Those variables together whipped up into a heapin’ helpin’ of pain central.  I was up all night moaning and groaning and wishing I was dead, a big shame, since I was getting up this morning to go to lunch with my angelic Mom and Nathan and Greg and the boys in Fredericksburg.  Oy.

So speed can only speed you up.  Nothing can speed you up fast enough to zip past the  pain.

Weekly Photo Challenge: Windows

Heidi in front of the "Seinfeld" exterior shot diner.

In Happier Times

I used to go to NYC a lot.  The City makes me happy all the time I am there.  My heart just pounds to the beat of the subways underground as I walk on the grates that cover them.  All the time I am there, I admire the architecture: a window, gargoyle, duck pond, or just a doorway.  I think the architecture, from the largest building, to the tiniest flourishes, keeps visual time for the rest of the world, since it serves as backdrop for so much of the popular culture.  So many of the shows seen on television and the movies are set in NYC.  Why does my heart pound in the city?  Why are the tourists so amazed by it?  By its beauty of course, but also because the city itself is a star.  It is the star of stage and screen, and we all know it from the shows.

While I was doing my dissertation, Margie took me all over the city, made sure I got all the right pictures to capture “New York City-ness” to write about.  This picture above was the quintessential Seinfeld place, the diner exterior shot. (I was writing about the sense of place in Seinfeld.)  These windows are recognizable by hundreds of millions of people internationally.  What better windows to use to enter the Weekly Blog Photo Challenge (a good way to start the first week of a blog, n’est-ce pas?).

Margie and I talked about my moving to New York, where she lives.  It seemed like such a no-brainer. Why not move to a place that makes you so happy?

When walking became so difficult and my fatigue became overwhelming, it was hard to explain, but even to travel to New York for an overnight visit began to look more like Mt. Everest or Kilimanjaro, beautiful to admire from a distance, but absurd to climb.  I am not giving up on it, though.

Greg (my brother) and I were looking at mobility scooters last night by email.  He suggests I get a megaphone so that I can yell at people to get the hell out of my way. I’m starting not to think this is such a bad idea.  Sharan suggests that I get two so that I could have a motorcade.  Even better!  I can picture myself in some sort of diva wear with a Swarovski crystal encrusted scooter, with those little handlebars with streamers.  Perhaps a boa (although I’m not fond of the feathers).  A mental picture has formed, I hope, one that develops an image of pure fabulousness, like none you have ever known on a scooter.  That’s what I will do.  A window from my rigor against doing this, to the crystal encrusted fabulousness.  We can have all kinds of windows.

New York, at least a visit, could be in my future.

Well, hell, at least a long walk around a museum could be.  Do you have any idea how much fun that sounds like?

372 days…tick..tick…tick…. (It is still, always hard to overlook that).

Day 373. Energy

Atlas sculpture, New York City, by sculptor Le...

Did you notice?  I missed a day. Day 374…completely gone. One whole day of important writing I could have done.  If I don’t finish a book, you’ll know why.

It was for a great reason.  I saw my oldest, dearest friend, Scott, yesterday.  We went out for lunch and celebrated his good health — he’s recovering from an ungodly illness that makes mine pale in comparison.  We hadn’t seen each other in many, many years, and it was just uncanny that we would find each other again and both have these awful illnesses at the same time.  We compared scars and all.  Mine are bigger and uglier.

That was worth missing some writing for.  I have a hard time remembering to keep things like that in perspective when I am trying to write, in pain and fatigued. It doesn’t seem like a lot to ask — to have the energy to go out for lunch, walk across the street to and from the parked car, and then hang out at home for a couple of hours.  Even after a nap, it seems like I’m not demanding much, then, to write a blog entry and then about four pages of my book.  No going, though.  (A normal person would give up, put the computer away, and enjoy some crap T.V. or read a book.  Not me.  I stared at that screen for hours in a cold sweat.)

I have been learning this energy lesson gradually now for more than ten years, and nowhere has it been a more difficult lesson than with my friends.

I have many good friends.

When I got sick, though, I began to feel like I was turning into the statue of Atlas, as though doing any single thing more would add to my load of holding up the world.  Just the act of going to work all week was such a drag on my dwindling energy that the simple, kind request of a friend to go to happy hour sent me into a spiral of angst.  I knew I wanted to go but also that I could not possibly drag my foot forward another centimeter.

My college and graduate school friends had to develop a great deal of understanding about the situation, having long ago known my party girl self. I used to be the one who instigated the fun, who extended the night the latest.  Now I have become the one who always says I can’t go out or that I have to leave early — or I just plain cancel the plans at the last minute because I am too sick to go.  Soon enough, people have eventually stopped remembering to call me.  It must have seemed like I didn’t like them very much. Newer friends, like the people I worked with at Northern Virginia Community College never knew me when I was not at least little bit sick, a little bit tired.  So they have not been so easily offended when I have declined invitations.  Still, never going out with the people you like the best is no way to make friends.  (Consider this: I am an equal opportunity decliner.  The people I like best obviously includes my family, and I have missed birthdays, Christmas, Thanksgiving, lots of things, because I didn’t feel well.)

Usually, work at the college was too busy to go to lunch with friends because we all had to teach, meet with students, or attend committee meetings.  However, on Friday afternoons, few classes met, and colleagues would sometimes be on campus and go to lunch. The week before school started was also a big lunch-going time.  I remember fall 2006 keenly because all the colleagues I thought were my friends had made lunch plans without me.  I sat at my desk and cried like a sixth-grader.  It felt just like sixth grade too, and I laughed at myself as I cried at how silly I had been to take the situation so seriously. I could logically see how they would exclude me.  They had no idea how grave my condition had become, and I had no explanation for them about how it had become that way.  So I sat at my desk and worked instead.

As I have gotten sicker, I have become even less connected to friends.  It has felt, and frequently still feels on bad days, like social events with friends and family (particularly among large groups) are so taxing that I need several days of quiet rest between them or I feel sick for a long time.  Even answering a lot of email at once makes me feel like I have been shouted at (please don’t stop emailing me, though!  I will answer you!).  I feel engulfed in the many tasks involved in answering those many emails.  It feels like it will take hours, though when I finally get to it, it only takes a matter of seconds to respond to most messages.

I went to the mall today, on Saturday, with my parents.  The walking was difficult for me — we went only about the distance of three city blocks.  The difficult part is afterwards, about an hour later, all the joints from my hips downward are in agony.  But also the number of people in the place drains my energy.  By the time we left, my body was like a dried out hunk of bread, crisp and crusty, barely able to move.  I had to rush home to the heating pad and a huge lunch (I get really, really hungry, as though I have run a marathon) and then to send my parents away, God love them.  I just had to be in a quiet place.  No voices.  I went almost immediately to bed.  All I could think of was “Thank God I don’t have to do anything until Monday.”  If anyone — the President, even — called, I would just say, listen, it’ll have to be Tuesday.  I’m booked this weekend and on Monday I have a doctor’s appointment.

All I can think of is I will sit as still as a statue in this amazingly comfortable memory foam bed, against this astonishingly soothing body-sized infrared heating pad and not move anything for the duration.  (Of course a thousand interruptions occur: I forgot the damn phone.  I get up.  Then I get comfortable again.  Now I forgot the damn cell phone.  Same routine.  Then I realize the remote for the T.V. is across the room.  Same deal.  What else?  What else?  I try to make it perfect.  This is my command module for the night.  I don’t intend to move again until it is absolutely necessary.)