May 122014


…I hope you are not saying that CFS patients are not as ill as HIV patients. My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have HIV.  — Immunologist Nancy Klimas to the New York Times (emphasis added)

Imagine yourself with the Flu. You’re a day past the “sleep 20 hours in a fog” stage, but you’re still pretty sick. You can get up for a few hours at a time, make yourself a sandwich or take a shower, maybe drive to the coffee shop for a latte. But you never really forget that you’re sick — with everything you do, your head throbs, your body aches, your brain feels fuzzy, and you can feel your bed calling you back to horizontal. One minute you’re too warm, the next you’re too cold. Noises seem too loud, smells too strong, light too bright. You might read, watch some TV, take care of your child or talk to your spouse, but all the while your body and your brain put out a distracting thrum of competing messages: “I’m siiiiiick. I don’t feeeeeel wellllll. Go lie dowwwwwwn.” After a few hours, it’s time to give in and take another nap. Exhausted as you are, sometimes you feel too rotten to sleep.

Most of us have been there. If possible, we just drop out for a day or two and rest till it’s over. But now take those few days of Flu and stretch them out over 9 years. What balls would you drop? What would happen to your job, your family and friends, your hobbies — your life?

To quantify it, imagine that research found most people with Flu lost between 50% and 85% of their normal functioning. Imagine the 10 things most central to your life — say Job, Family, Friends, Faith, Hobbies, Cooking Meals, Cleaning House, Self-Care, Fitness, and Travel. Picture writing each one on a notecard, then putting those cards face down, shuffling them, and taking 5 or 8 of them away. What’s left? What would the your life look like without the things you took so firmly for granted? What if you rarely left the house? What would those changes do to your self-image and self-esteem?

Now imagine that there wasn’t much your doctors could do. In fact, what if many doctors didn’t “believe” in the Flu, or thought that, deep down, Flu was just a bodily expression of some psychological damage. What if most of the other people in your life felt the same? What if they told you things like “I would understand if it was Lupus or something, but come on, the Flu? You really need to snap out of this Flu thing.” What if, despite a million severely affected Flu sufferers in this country, the disease received fewer research funds each year than Male Pattern Baldness? Imagine so many public misperceptions about Flu that even government health authorities repeated discredited data on their websites. Imagine the lack of a Flu test meant it was almost impossible to get disability payments for Flu — even for the 25% or more of Flu sufferers who were too sick to ever leave their house.

Imagine that one of the top 3 causes of death for Flu was suicide. Imagine that every other patient in the Flu community understood the hopelessness that could lead someone to that dark point.

The Flu analogy is the best way I can think of to describe my past 9 years with Chronic Fatigue. I know it’s impossible to convey the reality of chronic disabling illness to someone who’s never been there, but today is International Chronic Fatigue Syndrome Awareness Day and I wanted to give it a try. Some people with CFS are well enough to work and others spend years at a time confined to their beds, but for me, the best comparison these days is that “a few hours at a time between rests” stage of Flu. My biggest issue is fatigue and the way my brain never seems to work the way it should. There’s pain, but I would gladly take on even more pain if it meant getting my mind back. I struggle with the most basic activities of daily life — the other day I crashed and had to rest because a bath was too exhausting – but I’m lucky to have heroic levels of support from my husband and my mother. I also have finally found a primary care doctor and a specialist who believe in me and are willing to keep trying treatments for as long as it takes. Even when the chances of actually getting better seem low, it’s huge at least to have doctors on your side. Not everyone with CFS has that luxury. Still, it’s hard to keep hope alive when everything goes downhill year after year. I feel useless sitting around the house all day. I try to practice mindfulness and live in the present moment, but on bad days I struggle with feelings that a life spent sitting around is a wasted life. I parent as best I can, try to maintain relationships, clean far too rarely, and read and write when I can. But mostly I watch the years tick by unused.

In coming weeks, I’ll follow up with a few of the medical and social basics of Chronic Fatigue Syndrome. Please read on, for your friends and extended family and coworkers and neighbors who are out there on their couches and in their beds, suffering in silence. Chronic Fatigue Syndrome is more than just the “yuppie flu.” It’s not in our heads. And it’s slowly killing a million people while society looks the other way.

Oct 022012

When Vera was around 9 months old, she had a couple of nighttime tantrums that almost broke me. Vera was sleeping peacefully, an hour or so after bedtime, when suddenly she started to cry and kick and scream. She wouldn’t take a bottle, fought my hugs, and kept throwing herself to the floor. Nothing I tried would soothe her. The screaming and fighting went on for 30 agonizing minutes, 40, 45, until Vera finally settled back into an exhausted sleep and Mama dissolved into tears.

The first time was just weird. After the second, I did what I always do with strange symptoms — turned to Dr. Google. Results suggested she might be experiencing night terrors, but most articles reported that night terrors don’t start before the preschool years. One even insisted they only happen to teenagers.

Three years and a few hundred bouts of night terrors later, let me assure you that night terrors can strike babies and toddlers! Here’s our hard-won knowledge for anyone else out there facing something similar:

What are night terrors? A night terror is a bit like sleepwalking — a person may walk, talk, and open her eyes but is actually sound asleep. In fact, it can be difficult to awaken someone in the middle of a night terror. The “terror” part is because people with night terrors enter fight or flight mode, screaming and crying, fighting imagined threats, and sometimes running away. Most people don’t remember anything about the night terror once it has passed.

That may sound simple, but the actual experience can be horrifying. Vera either cries loudly in her sleep or yells “NOOOOOOOOO.” Sometimes “STOP” or “I DON’T WANT IT,” but usually just “NOOOOOOO.” Sometimes she slides to the floor. Often she just cries and thrashes. If we pick her up for hugs, she arches away or physically fights us. She kicks a lot, and sometimes she nails us hard. As a parent, it’s indescribably difficult to see your little one in trauma but get kicked away when you try to soothe her.

Terminology confusion: Some argue that “sleep terrors” is a better term than “night terrors” because they happen at nap time too. Sleep doctors use “confusional arousal” for Vera-style episodes. I find that term much too mild — her episodes are definitely more “terror” than “confusion.” But true medical “night terrors,” which do strike mostly teenagers, are on a whole other level. Teens suffering true night terrors frequently injure themselves or others during fight-or-flight.

What causes night terrors? No one knows exactly. They’re described as a “neural storm” that happens when a person gets stuck between normal sleep and wake cycles and one part of the brain signals sleep while another signals wake. Night terrors usually happen in the first several hours of sleep, during Stage 4 (deep, non-dreaming) sleep. They are most likely to happen when a child is overtired or sick. Sudden loud noises or other disturbances during the wrong part of sleep (I’m looking at you, yappy dog) can jolt Vera into a night terror. A full bladder or wet diaper are other common triggers. The episodes can hit several times a night for several nights in a row, then disappear completely for weeks or months.

Nightmare or night terror? Nightmares happen during REM sleep and are most frequent in the morning toward the end of a night’s sleep. Kids often wake up afraid, and older kids sometimes remember and describe their dreams. Night terrors happen during deep, non-dream sleep and are most common in the first few hours of a night’s sleep. The child will usually go right back to sleep after a night terror and won’t remember it in the morning.

How to handle an episode? Articles will tell you everything from “talk to him reassuringly and hold him close till it passes” to “don’t talk to him or touch him under any circumstances.” The best advice is usually to watch and be sure your child is safe but otherwise to let the episode run its course without interfering. That is easier said than done, though — most parents are compelled to try and comfort a child who’s so obviously upset. When Vera was younger, we could sometimes pick her up and hug her out of it. With small grumbles, I can usually “shhhh” her and quietly reassure her that we’re there. Now that she’s older, we try a series of questions: “Do you want a blankie? Do you want a teddy? Drink of water? How about hugs?” The first several offers are usually met with “NOOOOOO,” but sometimes we break through to a sad little “yes.” If those tricks don’t work, we just have to walk away. It always stops eventually. In fact, her terrors rarely lasts more than 5 minutes. But those 5 minutes can be very long for a concerned parent with a tragic child.

Are there treatments? Nothing much. Sedative and sleep drugs may work in severe cases. Luckily, most kids outgrow the problem.

Other trivia: The worse place Vera has had night terrors? Small bed and breakfast wasn’t fun (the rooms down the hall woke to middle-of-the-night bloodcurdling screams), but the absolute worst was on an airplane. Twice. Loud, extended screaming and fighting mom and dad, all while scores of judge-y strangers watch? Check and check. (And I’m not the only one — this blogger’s child had a 45 minute episode on a flight.)

Scholars suspect night terrors are the real-life explanation behind some stories of demonic possession.

My biggest worry? That Vera is seeing the things described by night terrors sufferers at this site. Hoping it’s purely a neurological thing and not terrifying visions. Our poor baby!

Do you know anyone who suffers night terrors? Any wisdom to share?

May 082009

I realize this probably isn’t circled on your calendars, but May 3-9 marks Vasculitis Awareness Week 2009. Vasculitis is a somewhat rare disease, and because symptoms vary it can be difficult for doctors to diagnose. Some vasculitis patients suffer symptoms for years before receiving effective diagnosis and treatment, so it’s useful for people to know these diseases are out there.

I was almost killed by vasculitis in my mid-20’s, and share my story here as a small way to raise awareness.

What is Vasculitis?

Vasculitis is an inflammation of the blood vessels. Because blood vessels are so central to the body’s functioning, this inflammation can lead to a variety of symptoms: the most common are low-grade fever, fatigue, weight loss (loss of appetite), skin ulcers or rashes, and pain in the muscles, joints, and/or nerves. The causes aren’t well understood, but many vasculitis diseases (vasculitides) seem to be autoimmune in nature (caused by the immune system’s mistaken attack on the body itself, as with the better-known Lupus, MS, and Rheumatoid Arthritis). Treatment generally involves a combination of corticosteroids to combat inflammation and chemotherapy to weaken the immune system.

My Story

My own form of vasculitis is Wegener’s Granulomatosis, an autoimmune disease that most often affects the respiratory system and kidneys.

According to the Vasculitis Foundation, researchers estimate that 2 people out of every million are diagnosed with Wegner’s Granulomatosis each year.My “2 in a million” moment came in 1996. I was just back from a few years abroad and (much to my parents’ relief) ready to start summer classes for law school, but I never felt right that summer. I had a temperature around 99 degrees that never seemed to go away, my nose ran constantly, and I was waking up every morning with bloody phlegm in the back of my throat. Then came nosebleeds, odd pains in my lungs, a wheezing sound when I breathed, and overall a feeling of being really unwell. Toward the end, I started coughing up pieces of lung. That’s when I really grew concerned.

I was a frequent visitor at Student Health that summer, dragging myself in every time a new symptom appeared. But for the most part, the doctors there didn’t see anything too unusual. They said it was a sinus infection, then “not a sinus infection, maybe allergies, probably nothing” (when I pressed my concerns, the doctor said 99 was “barely a fever,” nosebleeds “sometimes just happen,” etc), then “maybe pneumonia.” Meanwhile, I grew worse each week. By the time Finals rolled around, another Student Health resident finally referred me to a lung specialist. The specialist couldn’t see me for a few days, and the doctor called me every day in the meantime to check in. Still unclear on the seriousness of my situation, I told my mother about “the nice doctor who’s calling me at home to see how I’m doing.” My mother replied, “he’s calling you at home to see if you’re still alive.”

Sure enough, the specialist checked me into the hospital immediately. By that point, I was so weak I routinely stopped breathing for a few seconds at a time. My airway was swollen to only a few millimeters wide (the source of that wheezing I’d been hearing for weeks). A definitive diagnosis requires biopsy, so they put me under to take a sinus biopsy — in the process, I suffered a pulmonary hemorrhage and wound up on life support. But as soon as they confirmed the vasculitis and started me on steroids and chemo, the inflammation began to subside and everything took a turn for the better. I was in the hospital for a week, then took a year off to take the drugs and rebuild my strength.  As with cancer, there’s never a guarantee that the disease won’t reappear. But I’ve been in remission for over a decade now, and there’s also a chance it may not reappear.

Why Should You Know About Vasculitis and Other Autoimmune Disease?

Autoimmune diseases aren’t common, and hopefully you and your loved ones will never face one. But because their symptoms can be very general (“I’m exhausted,” “I don’t feel well,” “I have a low-grade fever”), doctors can’t always diagnose the problem quickly. As a health-care consumer, here are 2 useful things to remember:

(1)  If you have widespread or long-lasting undiagnosed health problems, especially if they include a prolonged low-grade fever, consider asking your doctor about autoimmune diseases.

(2) There are a few simple blood tests that measure inflammation in the body. (I’m most familiar with the “Sed Rate,” which has an added advantage of being super-cheap.) If you have extended symptoms that your doctor can’t figure out, consider asking about these tests. They are non-specific because inflammation can have many causes. But a particularly high result could be a red flag that further testing is warranted.

(3) And if you or someone you know is ever diagnosed with a vasculitis or other autoimmune disease, remember that the body is amazingly resilient and can handle a lot of attack.  There are many drug treatments available these days, and hopefully remission will be possible.  It’s never the end of the world!