I’m such a bad blogger

January 12, 2010 - Leave a Response

A good friend of mine is taking the MSLT in a couple of days, and I thought, oh yeah, narcolepsy.  Didn’t I blog about that once?

I have a good excuse though, I promise.  In early November, I found out I was pregnant again and promptly fell asleep for twelve weeks.  Between the exhaustion, crazy hard semester, work, and a toddler whose intestines literally collapsed (no, I am not exaggerating,) the blog has kind of fell by the wayside.


But now I’m in the second trimester and can manage to stay awake past eight.  At least for a couple nights a week.  So here’s hoping you’ll hear from me more often.

Anyway, I remember seeing this article before the end of the year: http://www.tennessean.com/article/20091228/NEWS03/91228032/1002/NEWS01/Driver+suffered+medical+crisis+before+fatal+wreck+++++

And it got me thinking.  Employers aren’t allowed to discriminate based on medical history, but as a narcoleptic myself, I would never ever consider a job that was centered on driving, especially after my accident last year.  No matter what medicine you’re treating with, with a job as important as ambulance driving WHERE THE LIVES OF OTHERS ARE IN YOUR HANDS, why risk having a sleep attack?  I can’t speak for the epilepsy part, since I’m unfamiliar with that particular disorder and the restrictions it imposes, but I think it would be completely fair to say a narcoleptic should not have a driving or piloting job.

I know this sounds strong.  Maybe unsympathetic even–which, to be clear, I’m not saying this poor man deserved to die.  But the most common treatment for narcolepsy is amphetamines, and I know on my Ritalin bottle, it cautioned against driving and operating heavy machinery.

The only problem is, if narcoleptics weren’t allowed certain jobs, where would it end?  Can a person with cataplexy be trusted to care for small children?  Can a narcoleptic be a spinal surgeon and perform 12-hour surgeries?  A soldier?  A cop?

What do you think?


This doesn’t have anything to do with narcolepsy…

October 20, 2009 - Leave a Response

…but it does have to do with my passion for healthy births and my future as a VBAC candidate.  This is crossposted to my xanga, so I apologize for the weird formatting going on.


I saw this on The Unnecesarean’s blog, and almost peed my pants.

A woman in Texas said her doctor handed her this “birth plan,” his philosophy on birth.  I got so pissed reading it that I could barely see straight.  WHAT WILL IT TAKE?  (I want to add, for the record, that I had an awesome OB with Noah’s birth, who was a DO and let me do a lot of things most doctors wouldn’t, like labor for FIVE DAYS, or go almost 24 hours with broken water, or stay all night even though he’d been up since two and wasn’t the doctor on call.  And, since I had to get a new OB/GYN for insurance reasons, I also want to point out that my new doc is also hella awesome and highly recommended by ICAN.  I’m not anti-OB by any means!  I’m just anti-FLIPPING RETARDED NON EVIDENCE BASED OBS WITH GOD COMPLEXES. [I’d also like to point out that I’m not on Nyquil right now.  This sass comes straight from a lucid heart.])


DR. ________ “BIRTH PLAN”


Dear Patient:

As your obstetrician, it is my goal and responsibility to ensure your safety and your baby’s safety during your pregnancy, delivery, and the postpartum period. My practice approach is to use the latest advances in modern obstetrics. There is no doubt that modern obstetrical advances have significantly decreased the incidence of maternal and fetal complications. The following information should clarify my position and is meant to address some commonly asked questions. Please review this information carefully and let me know if you feel uncomfortable in any way with my approach as outlined below.

* Home delivery, underwater delivery, and delivery in a dark room is not allowed.

* I do not accept birth plans. Many birth plans conflict with approved modern obstetrical techniques and guidelines. I follow the guidelines of the American College of Obstetrics and Gynecology which is the organization responsible for setting the standard of care in the United States. Certain organizations, under the guise of “Natural Birth” promote practices that are outdated and unsafe. You should notify me immediately, if you are enrolled in courses that encourage a specific birth plan. Conflicts should be resolved long before we approach your due date. Please note that I do not accept the Bradley Birth Plan. You may ask my office staff for our list of recommended childbirth classes.

* Doulas and labor coaches are allowed and will be treated like other visitors. However, like other visitors, they may be asked to leave if their presence or recommendations hinder my ability to monitor your labor or your baby’s well-being.

* IV access during labor is mandatory. Even though labor usually progresses well, not too infrequently, emergencies arise suddenly, necessitating an emergency c-section. The precious few minutes wasted trying to start an IV in an emergency may be crucial to your and your baby’s well being.

* Continuous monitoring of your baby’s heart rate during the active phase (usually when your cervix is dilated 4cm) is mandatory. This may be done using external belts or if not adequate, by using internal monitors at my discretion. This is the only way I can be sure that your baby is tolerating every contraction. Labor positions that hinder my ability to continuously monitor your baby’s heart rate are not allowed.

* Rupture of membranes may become helpful or necessary during your labor. The decision as whether and when to perform this procedure is made at my discretion.

* Epidural anesthesia is optional and available at all times. The most recent scientific data suggest that epidurals are safe and do not interfere with labor in anyway even if administered very early in labor.

* I perform all vaginal deliveries on a standard labor and delivery bed. Your legs will be positioned in the standard delivery stirrups. This is the most comfortable position for you. It also provides maximum space in your pelvis, minimizing the risk of trauma to you and your baby during delivery.

* Episiotomy is a surgical incision made at the vaginal opening just before the baby’s head is delivered. I routinely perform other standard techniques such as massage and stretching to decrease the need for episiotomies. However, depending on the size of the baby’s head and the degree of flexibility of the vaginal tissue, an episiotomy may become necessary at my discretion to minimize the risk of trauma to you and your baby.

* I will clamp the umbilical cord shortly after I deliver your baby. Delaying this procedure is not beneficial and can potentially be harmful to your baby.

* If your pregnancy is normal, it should not extend much beyond your due date. The rate of maternal and fetal complications increases rapidly after 39 weeks. For this reason, I recommend delivering your baby at around 39-40 weeks of pregnancy. This may happen through spontaneous onset of labor or by inducing labor. Contrary to many outdated beliefs, inducing labor, when done appropriately and at the right time, is safe, and does not increase the amount of pain or the risk of complications or the need for a c-section.

* Compared to the national average, I have a very low c-section rate. However, a c-section may become necessary at any time during labor due to maternal or fetal concerns. The decision as to whether and when to perform this procedure is made at my discretion and it is not negotiable, especially when done for fetal concerns.


DON’T YOU WANT TO TEAR YOUR HAIR OUT READING THIS?  These are the things that make me wish I was ballsy enough to have a baby at home…I’m scared of having to fight like The Feminist Breeder did for her VBAC while she WAS IN LABOR she had to fight and fight and fight.  What if my doctor isn’t on call and I get a d-bag like this waving a Pitocin bag in my face?  I’d just like to point out that NONE of these practices result in a healthier mom and baby, just more money and convenience for the doctor.  The United States has the most expensive medical system in the world, yet our outcomes?  We are ranking 28th in the world for maternal mortality and last in developed nations for infant outcomes.  This is the fruit of the above birth philosophies.  More dead moms, more dead babies, not less.  And how many moms are scarred, literally and spiritually?  How can we know the effects of non-physiological birth in the long run?  A new study suggests that c-section births LITERALLY CHANGE YOUR DNA.  A third of our babies are being born this way…it’s not something to take lightly.  (I want to add here that I am extremely grateful for c-sections as a lifesaving tool.  Noah was in transverse arrest and was not coming out any other way.  Dr. Curry saved his life.  But the fact is that my situation is fairly rare and we tried everything we could, even a healthy tincture of time, to get Noah out the normal exit.  Cesareans save lives.  No one doubts that.  They are just overused–31% to the 10 to 15% the WHO recommends.) 

I saw this picture somewhere, and I thought it was such a jarring, sad image, yet so true.  I was so disappointed that I had to surgically birth my son, and my recovery was so painful, physically and emotionally, as it delayed my bonding and breast-feeding.  Yet I heard this sentiment a lot, as if my pain wasn’t valid.


Provigil going generic and the ensuing push for Nuvigil

September 27, 2009 - Leave a Response

I’ve been curious to why  Cephalon has been so eager to get people switched onto Nuvigil.  It hasn’t been out long–just since June–so I haven’t really gotten a good feel for what people think about it, although it does seem to work longer (being a delayed release pill) and with less depressive side effects.

But Provigil’s patent will be up soon, so Cephalon is trying to avoid the generic-hurt by getting most their users on Nuvigil.  Interesting.

But mostly, I’m psyched.  Provigil going generic means good things for my checking account.

Thank you

September 20, 2009 - Leave a Response

Thank you all so much for your kind words and support.  I know that this transition would be impossible without you all.  I’m now in a place where I can occasionally see bits of good things about weaning.  No more worrying about supply!  No more pumping!  Pretty bras!  But I’m still grieving some for our nursing relationship.  Maybe I’m just a clingy mom or maybe it’s the oxytocin withdrawl, but when I realized that I had only nursed Noah once today, I started crying a little bit.  Luckily, my husband was right there to rub my shoulders and remind me that Noah will love me, booby or no booby.

Noah has been dealing with this significantly better.  Today, he guzzled almost twenty ounces of the cream top organic whole milk, and when we were nursing and the bottle was on the bed next to us, he actually pulled off, crawled out of my lap, and grabbed the bottle.  So he doesn’t really seem to notice that much has changed.  Who knows?  Maybe he would have self-weaned in a few months anyways.

In the meantime, thinking positive thoughts.  No more leaking!  Limitless caffeine!  Pretty bras!

My Heart is Breaking…

September 13, 2009 - 5 Responses

I have a friend who posted a blog with the same name.  I can’t even remember what it was about now, only that as soon as I read the title, my heart broke along with hers.  Something about the present tense, maybe, or the ellipses, but it made the pain seem so much more lingering, something that was ongoing and wouldn’t heal for a long time.

I am going to give you a little scene.  My son and I are at our doctor’s, waiting for him to get his ears checked (he had an ear infection a few weeks ago.)  I sit down with him on the floor, pull out a toy from his diaper bag and begin playing with him.  I feel so tired and exhausted and I start running the nap-numbers like I always do: just one more hour until his nap, then I’ll nap with him and he’ll probably nap for a good two hours this afternoon since his morning nap was short and I wonder if I turn the AC down if he’ll sleep longer—

I jerk awake.  I don’t know how long I’ve been asleep, but Noah has crawled out of the empty waiting area and is gleefully crawling toward the patient’s rooms.  I run to scoop him up as my cheeks blush in shame.  What kind of mother am I?  What if this had happened and a kidnapper was in the room?  What if this had happened outside and he’d crawled into the street?  What if–?  What if–?

I wish I could say this is the first time something like this has happened.  But it’s not.  I routinely wake from a nap to find Noah crawling back onto the bed after God knows what adventures around the bedroom.  The last month, I’ve had some trouble carrying him because I’ve felt so physically weak.  Some days, I just lay on the floor and let him climb on me like a jungle gym, because I’m too tired to sit up.

And the worst-case scenario has finally happened.  I’ve fallen asleep while driving and woken up in a wrecked car.

I believe in God, but, like most humans, I am a pretty selfish person and most of my prayers revolve around things I want.  I ask for things.  Lots of things.  Sometimes they are good things, like please help people in Africa find clean water and please stop those awful people killing dolphins in The Cove.  Sometimes they are things I know God won’t answer with anything but a headshake–could you please stop ACOG from needlessly slandering homebirth, midwives and evidence-based medical care?  Could you please tell Kings of Leon that they’ve hurt our ears enough with Anthony Followill’s voice?

But after my wreck, my prayers have constantly been

Thank you

Thank you

Thank you

Because what if Noah had been in there with me?  What if, instead of a country ditch, I hit another person, another car, a child?  I’ve transformed into a sleepy girl into a near-murderer. 

Whenever I think of Noah being in the car when I doze off behind the wheel, I already hate myself.  I can already see myself at his bedside in the hospital, trying to explain to doctors why I was driving without medicine during the morning, which I’ve known for years to be my weakest part of the day.  I can’t forgive myself for the things that I could have done.

I tell you all this story so I can tell you this story: I have decided (with the help of my doctor) to try some medicine to manage my disorder.  This medicine is an L 4 rating, which means it is risky to use while breast-feeding.  This means that I must wean Noah after a year of nursing.

What can I say, other than my heart is breaking?  The doctor handed me the precription, I carried Noah out to the car and cried in the parking lot.  I’m not ready.  He’s not ready.  Nursing was one of the biggest challenges of my life, something that I fought tooth and nail for, and now I have to stop for this thing, this mutation in my DNA.  I picture my hypocretin-producing neurons taking naps in my brain, stumbling around drunk, and I want to hit them, bruise them until they wake up and do their job.

I cried off and on for the rest of the day, and made everyone around me miserable by being a maudlin mope-head.  When Noah nurses, I cradle the back of his head and twirl the little curls at the nape of his neck, asking myself if I can give it up. 

When you’re pregnant, this little being hijacks your life utterly.  No booze, no sushi, no sex (for me with Placenta Previa.)  After a while, you get used to it.  Even though you’re sweaty and fat and swollen and exhausted, it’s okay because they’re right there with you, swirling around in your womb, sleepy and content. 

You belong to each other as much as two human beings can belong to each other.

And when they’re born—it’s this intense magic.  They still need you almost just as much.  Those early days of cradling Noah to my skin, snuggling in the glider while he nursed for hours on end—they were delirium.  For the first time, I felt the fierce animal-feeling of protecting and nourishing my little nursling.  That love is so unreal and unlike anything words can relay.  Suffice it to say, that to me, mothering and nursing were and are very tied together.  It is millions of years of evolution that shouldn’t be denied.  And it is this intensely spiritual thing that has brought my entire family closer to God.

It must end now.  In my heart of hearts, I’m terrified that it will alter mine and Noah’s relationship somehow.  That suddenly I’ll just shrink into an ordinary woman, and he won’t be as securely attatched, and I’ll just be another lady who watches him, like Grammy or Aunt Ashley.  I know that A Mother Is Not Just a Breast, and every generation since the Twenties has managed just fine with mother-baby bonding on a non-breastfeedng basis, but I still can’t banish these fears.  I’ve never been a mother without breast-feeding.  Logically, I know it will be fine, and that a year is a damn good run for breast-feeding in our culture.  I also know that it might be a rough month, but that he won’t really miss it that much.  He’s too busy crawling, rolling, giggling, chasing, babbling to notice if he misses a feeding even now.  The fact that I’ll be in this mire of emotional pain while he’ll be occupied with other things make’s me a little sad.  He’s so grown up 😦

But what is parenting but watching your child need you less and less?  And while they thrill in the newfound independence, you are left holding the slack end of the tether, wondering how it flew by so fast.  How you finally managed to rearrange your identity and your Google calendar around the little guy, but they are running, not walking, down the road to separate from you.

What can I say other than my heart is breaking?

It’s been a while

September 8, 2009 - One Response

But I’m finding out how hard it is to be back in school full time.  And then I went on vacation, and came back to the usual pile of work that awaits one after a vacation.  And of course, there is work with all of its workiness.

I’ve also been wrestling with Big Decisions.  Namely, when to wean my son.  In a few weeks, he’ll be a year old (I can’t believe it,) which is an age that I feel theoretically comfortable with weaning.  I commute on the highway anywhere from two to four hours a day, and I really feel that it’s time that I consider some medicine to keep me going.  A year of breast-feeding is amazing, considering mine and Noah’s rough start at it, and I’m so happy that I’ve been able to give him the superior nutrition and comfort for this long.

It seems so clear cut on the screen.  A year old is when many women who are still nursing wean, it is the age range given by the AAP, and I need medicine.

But the thought of losing those sweet nap-times, where he nurses to sleep and I doze off patting his bottom; of the random, upside-down puppy-style feedings on the living room floor; of the calming cuddles after a scary fall or loud noise…

What can I do?  End this sweet, sweet time before I’m ready?  Or continue to play the odds that I won’t catastrophically crash my car and cause serious injury to myself or a stranger?  Or my baby?

Reading this post over, the answer seems simple once again.  Why would I risk even the smallest chance of harm to my precious Noah?  But when I’m nursing him, snuggled in bed, with his large hazel eyes blinking up at me, the danger seems so remote, unlikely.  The next few weeks are arranged so I don’t have to make a decision right away.  Fingers crossed that the doctor will have some answers.

Strep Throat a Trigger?

August 23, 2009 - 2 Responses


I confess this worries me.  The many varying opinions on whether narcolepsy is inherited or not (the consensus seems to be yes, but only slightly) don’t provide a clear answer, but I feel that it’s safe to assume that as a carrier of the HLA gene mutation, there is a small chance Noah could have it too.  So he may possibly have the genetic predilection for narcolepsy…

How on earth can a parent protect their child from strep throat?  It’s almost inevitable that he’ll get it, especially since we’re planning on sending him to a public school and we’re already availing use of the church nursery.  I’m fairly certain that the trigger for my own disease was the catastrophic staph infection/coma I experienced in high school.  Life-threatening septic shock?  Pretty minor chance that my son will ever see that.

Strep throat?  Well, the odds are not in our favor.  Here’s to hoping the HLA gene mutation was not passed on.

Dare we hope?

August 18, 2009 - 2 Responses

Jackie Millet left her home in Welles, Maine, at 7:30 a.m. She was worried that if her husband dies, she’ll lose his private supplemental health insurance, and will be left with Medicare.

“Medicare helps cover most of what I need done,” she said. “The supplemental helps to pay for my meds, and those are very expensive. I have narcolepsy, where I tend to fall asleep, so I need it to stay awake and without it I can’t function. I couldn’t be able to drive.”

Millet got to ask her question. “I take a lot of medications. I’ve had a lot of procedures,” Millet told the president. “How will Medicare, under the new proposal, help people who are going to need things like this?”

“In terms of savings for you, as a Medicare recipient, the biggest one is on prescription drugs,” President Obama replied, “because the prescription drug companies have already said that they would be willing to put up $80 billion in rebates for prescription drugs as part of a health care reform package.”

Millet would still have to pay out of pocket for her drugs, but, the president argued, it would be less than she’s paying now.

–“A Civil Discourse at Obama Health Care Forum,” Fred Thys, wbur.org

Since the debate over health care is still in the thorny wilds of none-one-is-sure-exactly-what-is-going-on, I thought this might be the perfect opportunity to examine what support narcoleptic (and other sleep-disturbed) Americans need and would get if this were a perfect world.  (I am anticipating that any reform would not result in any significant changes for most of us.)

And I make a point to say sleep-disturbed Americans because we have different needs than other citizens of the world.  For example, your average Berliner doesn’t worry about falling asleep while driving since he takes public transit (although you still wouldn’t want a sleep attack there, either.)  And your average Sherpa probably wouldn’t worry about falling asleep at a desk job.

What we have right now: Access to drugs–unavailable in generic form and so very expensive–and the “right” to adjust our work schedules to our sleep needs.  So if you’ve been properly diagnosed and can provide some sort of proof, you should be under the umbrella of the Americans with Disabilities Act, where the employer is legally required to accommodate your disorder, perhaps by granting extra breaks or longer lunches (that could include a nap.)

There are two big problems with the ADA protection.  1) Narcolepsy is extremely under-diagnosed.  Because of its comical portrayal in the media and the overall cataplexy/narcolepsy confusion, many people associate the disease with dramatic faints or falling asleep in your soup, and therefore are unfamiliar with the more common symptoms, such as EDS.  Not only are doctors failing to recognize it, but the narcoleptics themselves are unaware that they’re suffering from a subtler version of the funny disease they see on TV.  The undiagnosed narcoleptic may be in constant degrees of reprimand at their job, always in trouble for sleep-related behavior, and have no idea that they have an autoimmune disorder.  Simply put, the ADA protection for sleep disturbed people fails because so many of us don’t know we have a truly medical disease.  And without knowing that, how can we demand our rights?

2) Narcolepsy and other sleep disorders aren’t taken very seriously.  I still struggle with this issue in my life.  It is difficult to make someone understand how profound the effects of disturbed sleep are–and why you need to take a nap in the staff kitchen.  To someone with normal sleep patterns, the frequent need for naps and ambulation might seem at turns lazy and petulant.  But as any parent of a newborn knows, just a few days of disturbed sleep will impair your focus, mood and effectiveness.  (Imagine an entire lifetime of this!)  Employers are technically required to help you if you ask, but we all know that there are several ways employers can get around this.  The most common would be an overall unhelpful attitude on the part of the boss, contributing to a negative atmosphere where the narcoleptic feels guilty about their needs ( and perhaps putting a temporary strain on their colleagues while they take a nap break. )

I’ve never heard of this happening, but it certainly wouldn’t be difficult to imagine a scenario where a boss needs to lay off one worker.  The narcoleptic employee would make the most sense–but of course legally that could not stand.  So he invents a reason.  Maybe–this hits close to home for me–the employee gets fired for chronic lateness, caused by the narcolepsy.  Because they’re being fired for lateness and not narcolepsy, this is legal, even though the employee has about as much control over their waking as they do their sleep attacks.

What I’d love to see:

An initiative to properly and more thoroughly diagnose those with disorders.   This would necessitate that more doctors become familiar with the different disorders and that the required tests (such as a MSLT) could be provided without being a financial burden to the patient.

Drugs used to treat narcolepsy available in generic form.  This includes, but is not limited to: Provigil, Ritalin, Dexdrine and assorted antidepressants.

Workplace concessions to the physical needs of a tired employee.  Perhaps every workplace should have a semi-quiet, semi-dark nook or room with a couch, so that people can nap comfortably.  Perhaps businesses could adjust some of their operation norms: an insomniac could work from home at night, then sleep during the day.  (This obviously wouldn’t work for many jobs, but I feel confident that it would for many professional ones.)

These three things would help assure that sleep-disturbed individuals get the identification and support they need.  Will they ever happen?  Not for a long time.  But it never hurts to dream.

Welcome to Spare the Nod, a blog about parenting with a sleep disorder

August 11, 2009 - 5 Responses

One night when my son was a week old, he woke crying for the fourth time in two hours.  I hobbled out of bed, hunched over my c-section incision, picked him up out of his bassinet and took him to his nursery where I tried to change his diaper.  His screams echoed in the silent house—I could hear my husband tossing in his sleep at the noise.  After a week of recovering from surgery—with five days of prodromal labor before that—and a nightmare of attempted breast-feeding, I was exhausted.  I looked out the window at the inky black night and had the fleeting wish that Noah had never been born.

And then immediately was swarmed by guilt.  How could I think that?  After two heartbreaking miscarriages and a difficult pregnancy complete with bed-rest and hospital stays, how could I not be elated that this precious boy was here and safe?

I cuddled Noah close to my chest and sat down in the glider, where we both cried until we fell asleep.  The next day, I was determined to find some answers.  Because I was not just suffering from the baby blues, and I did not have any other symptoms of post-partum depression.  No—I had narcolepsy and was suffering from extreme sleep deprivation.  I’d gone from sleeping sixteen hours in a day to maybe three or four.  And because I was determined to breast-feed, medicines were not an option.  I would have to find ways to cope non-pharmaceutically.

I browsed the internet.  Endlessly.  Searching for anyone on any forum who’d had experience parenting with narcolepsy—or any sleep disorder.  The results were disappointing.  Narcoleptics don’t have a huge showing on the internet; we’re not a large group, and any time we have free to surf, we’re probably using to nap instead.  All I could find were a few thin resources on parenting children with sleeping problems and a handful of desperate forum posts from exhausted mothers.  Luckily for me, sleeping and breast-feeding got a lot easier and continue to get easier by the day, but there will be new hurdles.  Especially if a second tot comes along!

So here’s my solution: I’m going to blog about my own experiences as a narcoleptic mother.  I’m hoping anyone who has answers, experiences, opinions, information on this somewhat esoteric lifestyle will comment with their advice.  And I want anyone with any type of sleeping disorder—not just narcolepsy—to chime in.  So all you with insomnia, hypersomnia, shift-related disorders, sleep apnea, sleep-walking or even restless legs syndrome or night bruxism—please feel free to share, even if you’re not yet a parent.

In the meantime, I’m going to explore different topics and strategies as they come up.  Hopefully, even if it’s just by reminding us that we’re not alone, we can cobble together solutions to make the impossible a little easier.