Chronic Town

Bernie Mac died. At first his publicist denied that his sarcoidosis had anything to do with his death from pneumonia. But later, his sister came forward to say that his immune system was weakened by medications that kept his sarcoidosis in remission, but that made him vulnerable to two different strains of pneumonia. I assume it was the dreaded Pneumocystis pneumonia (PCP) that killed him.

Bernie Mac was never a spokesman for sarcoidosis. Unlike Michael J. Fox with Parkinson’s disease or Lance Armstrong with cancer, Bernie Mac, as far as I know anyway, never launched an awareness-raising campaign for sarcoidosis. Even when his face became almost as puffy as mine (I assume from prednisone) on his acclaimed television comedy, “The Bernie Mac Show,” he didn’t make much of a fuss about being sick.

After Bernie Mac died, the sarcoidosis-related chat rooms that I visit were abuzz with fury at the short shrift sarcoidosis was given in initial reports of his death. Although I didn’t see the footage (having a visceral loathing of anything related to FOX news), posts on sites such as Sarcoid Buddies said that Sam Shepherd of FOX trotted out a doctor who said the celebrity died of pneumonia—end of story. What particularly outraged the chat room folks was how this doctor seriously downplayed his underlying disease. She said something to the effect that most people who have sarcoidosis don’t even know they have it because it rarely causes any complications or symptoms and usually just remits. I assume the doctor—and then FOX—were simply parroting the press release Bernie Mac’s family supplied. It took a couple of days for his sister to come forward and talk about the disease, as well as for other doctors to note that 50-year old men typically don’t just up and die from pneumonia. Then it took a couple of days more for sarcoidosis itself to make its way into the headlines. The Chicago Tribune ran a piece using Bernie Mac as a lens onto the wider issue of the millions of lives wrecked by sarcoidosis. (You can find the full article at:
http://www.chicagotribune.com/features/lifestyle/health/chi-sarcoidosisaug12,0,5966562.story.)

I can understand the rage circulating in the sarcoidosis chat rooms. Many doctors downplay the disease. I remember when I was first diagnosed, the surgeon came to the recovery room to tell me the “good news” of my lung biopsy. We had feared I had lymphoma, but instead all I had was a “minor condition,” one with a funny name that tied up my tongue every time I tried to pronounce it. Four year after that good news, I won’t go so far as to wish I had lymphoma instead of sarcoidosis, but I do often ruefully ponder the fact that there is a known protocol for treating lymphoma, that doctors are finally beginning to understand the disease process underlying lymphoma, and that you can be “cured” of lymphoma. While many cases of sarcoidosis do indeed spontaneously remit, there are others that don’t. We who develop chronic, multi-organ sarcoidosis occupy what feels like the dimly-lit back halls of medical knowledge. Our treatment feels nebulous. Case studies of various therapies, ranging from antibiotics to chemotherapy to thalidomide, sometimes cite patient samples that number in single digits. I half-expect some sarcoidosis “expert” to bring out the leeches or the blood-letters, or maybe start talking about dangerous vapours or black bile causing my problems.

One woman on Sarcoid Buddies vented about what it feels like to have a severe form of a disease that White Coats too often minimize:

“If Bernie Mac had been in remission, .don’t they know that he could have come out of remission?… Don’t they understand that our immune systems are messed up…? I don’t understand why they want to just sort of sweep the fact that he had sarcoidosis under the rug, so to speak. Is it because they don’t know enough about it and don’t want to look stupid trying to answer questions by the press?… To me it seems like a slap in the face to all of us who are suffering with the disabling problems and pain that can stem from this disease every day of our lives. Those of us who are unable to work. Whose dreams have been shattered. Whose lives have been changed. It makes us look like we are a bunch of hypochondriacs complaining about a disease that a doctor on Fox news said that usually has no symptoms at all and just goes away. We know that isn’t true in ALL cases. But, what can we do about it? How many of us have to die before they realize that it IS from complications of sarcoidosis? I’m just furious about the way this disease is downplayed when I know so many that have lost their lives to it. … This disease robs us of so much and now people are trying to rob us of our dignity when they downplay this disease like this.” (You can read the full discussion and this woman’s entire posting at http://groups.msn.com/SarcoidBuddies/general.msnw?action=get_message&mview=0&ID_Message=31470&LastModified=4675685466442838062)

As much as I understand the anger of what it feels like to have a non-trendy disease, I can also understand Bernie Mac’s reticence (which followed him posthumously in the press release circulated by his publicist). Even though I feel compelled to write about my experiences with this disease and the myriad ways it has distorted my life, I still long to return to a “normal life.” I’ve been so occupied with this sickness that I’m not even sure what this normality would look like, but I’m pretty sure it would involve not having a constant piercing headache, vertigo that makes walking around feel like I’m on a heaving ship, joint pain so severe there are days I can’t type or hold a pen, medical protocols that leave me sick and dry-heaving, worries that I too will die of pneumonia, so little energy that building Legos with my son exhausts me, and so forth. I crave the little things I have lost: my balance, my ability to drive, the feeling in my left leg, and, most of all, actually reading a book. (My father-in-law, Steve, has generously given me free reign of his audible.com account, so I can download books to listen to, but still I miss the sacred feeling of a book in my hand, the rustle of turning pages, the printed words taking shape before my eyes.)

In fact, my quest for a run-of-the-mill life gets me into trouble. The other night I wanted to take out the trash. It’s not that I was pining for a trip to the big garbage bin, per say, but, on a subconscious level, I think I did want to simply scoop up the stinky bag of garbage, traipse down the porch stairs, and toss the bag in—without having to analyze it. Unfortunately, somewhere between traipsing and tossing, my vertigo set in, the whole world started to spin, and I feel down the porch steps, landed on concrete below, re-injuring my knee (still painful from my last fall) and my “good” ankle (i.e. not the one with the ruptured ligaments.) As I lay on the pavement, with a weed poking into an open wound on my chest (another story, that, about having a port installed for chemo), I was enraged. “Fuuuuuuck!” I screamed, to the weed, to my vertigo, to my ankle, to my disease. That one vital scream summed up my frustration of having to wash my hands seventeen times a day to avoid the near occasion of germs, to inquisiting my friends about their health if they want to get together in case they might pass a bug to me that leaves me like Bernie Mac, to having a calendar filled with nothing but doctor’s appointments, infusion appointments, physical therapy appointments, and surgery appointments. I’d like to hold up a perfectly normal life for the world to see–but I’m too busy falling over, spontaneously rupturing ligaments, watching liquids drip into my body, and swallowing handfuls of pills in the faint hope that one of them might someday make this damn headache go away. No wonder I just wanted to take the trash out.

It’s bad enough to live this way, but worse still to have a friend, your doctor, or even some airhead “medical expert” on FOX news, tell you that the disease you have isn’t that bad, that all around you people are getting well. One way to deal with this is to put on a brave face, no matter how puffy the prednisone has made it, and be as normal as you can. Bernie Mac did this, and he was indeed brave. I try to do this too. Sometimes I succeed. Other times, I end up yelling obscenities at a weed. I guess I’m still trying to find that middle way—living with an awareness that I can do some normal things, but an acceptance that other basic tasks might end up with me and the weed having additional unpleasant conversations.

Jay and I used to watch the “The Bernie Mac Show” before Andrew came along and seriously reduced the number of hours we had available for television. I liked the program, which was a comical take on a semi-fictionalized version of Mac’s own life: Mac and his lovely wife take in his drug-addicted sister’s three children and raise them as their own kids in their affluent Los Angeles neighborhood. Usually he tried to control a situation—whether it was his rebellious teenage niece/daughter sneaking off to a concert or his wife trying to participate in his “boy’s night” poker game in the basement—but in the end, he often got his comeuppance and saw that he was being a bit too controlling, a bit too impatient, a bit too attached to his creature comforts. He wanted his life as it was before three needy, mouthy kids descended into his world, but he loved them just same. He learned anew, every time, how difficult but necessary change is. I relate to that. I think he kept the sarcoidosis-related changes to his life private, but the theme of his program resonates with my experiences with the disease.

I hope that Bernie Mac’s death raises the general awareness of sarcoidosis and other auto-immune diseases. Indeed my fellow blogger, Alicia, on her excellent site, I’d Like To Buy A Bowel (http://idliketobuyabowel.blogspot.com/) makes me feel lucky that I have sarcoidosis and not the even lesser known Crohn’s disease. Illnesses shouldn’t have to compete with one another for eliciting compassion or research dollars, but, in reality, they do. What sarcoidosis needs is an eloquent spokesperson, with a media-savvy fund-raising machine behind her. I’m too damn tired to start such an organization, but I hope someone will. Sadly, I think it is likely that Bernie Mac’s death will result in a flurry of articles in People and suchlike magazines, before some other celebrity-related tragedy tops the news cycle and the world quickly forgets sarcoidosis again.

I’m sad that Bernie Mac died. He struck me as a funny, good guy. I wish he had publicized his struggle with sarcoidosis more during his life, but I understand why he didn’t. He just wanted to live a normal life. We all do. Rest in peace, Bernie Mac and you nameless thousands who have died from sarcoidosis.

I’m back from Cincinnati, my city of new hope. It’s also, I learned, a city of sudden falls. As I mentioned in my last entry, I traveled there to meet with yet another new physician, yet another specialist in sarcoidosis.

Truthfully, I went to meet the new doctor with fairly low expectations. After all, I’ve sat across from my fair share of honchos—men and women with degrees trailing after their names like titled nobility. I’ve experienced (or endured) the best that modern medicine has to offer. I’ve slid into sleek PET scan machines that look like space capsules and that left me radioactive for hours afterwards. I’ve watched new drugs drip into my veins, and wondered that with one dose of this high-tech stuff costing over $8,000, how much each drop must cost. I’ve heard the White Coats toss off words like TNF agents, ischemia, AST levels, gadolinium, and infarction, as if they were common words, the stuff of average conversation.

At the end of it all, though, after all the scanning, after the flurry of medical words, after the slow administration of toxic medicine, my visits to these experts ended with nothing more than some head-shaking and some head-scratching, and a disease that has afflicted my body like a pinball machine would—bouncing into my heart, my lungs, my brain, my pituitary gland, my lymph nodes, my nerves, my bones, and my liver—seemingly unchecked by all the promised wonders. Jay and I have spent thousands of dollars in search of the best and the brightest. It felt like we were climbing mountains to meet with mystical hermits tucked into caves—men and women who could pronounce a cure, or at least make some sense of my disease. But the mystics ended up having billing departments out back of their caves, along with a fleet of MRI machines. Each guru ordered the same tests, tossed off the same words, and shrugged in nearly identical fashions. They left us with a bad taste in our mouth for the whole sordid business of seeking healing, not to mention some nasty blisters from all that climbing to reach the caves.

Your probably get the sense that I didn’t want to go to Cincinnati, to meet yet another Wise Man, a new Wizard of Sarcoidosis. If it had been left up to me, I would have stayed home and waited for the pinball course of my sarcoidosis to knock out another organ. What would come next? My spleen? In my defense, my cynicism isn’t without cause. The “treatments” prescribed for my disease (namely, prednisone and a bevy of immune suppressants) left me not cured of my disease, but instead, nearly a hundred pounds heavier (and thus susceptible to a host of other afflictions) and frequently in the hospital or in the doctor’s office trying to ward off a nasty infection invited in by my weakened immune system. But the formidable combination of my husband and my mother blasted me out of my ennui and to Cincinnati.

Imagine my surprise, then, when the Wizard actually had a few tricks up his sleeve. Doubly shocking was finding him not tucked away in a cave of impenetrability, nor hiding behind a curtain of medical jargon. He simply talked with me for over two hours; he laughed at my attempts at jokes; he reviewed my MRI films with me, pointing out where he could see the tell-tale signs of sarcoidosis in my bones. Most incredible for me was that he began our meeting with a message of hope, not the usual head shaking and blathering on about the unknowability of my affliction. “Every year, you have a ten percent chance of going into remission,” he said. But he also didn’t want to waltz me off into a lethe of false hope. He admitted that I had a pretty crappy case of sarcoidosis. He’s had other patients with headaches as persistent as mine (eight months and still running, just in case you were counting); my vertigo didn’t confound him either. He’s sure (or as sure as he can be when it comes to dealing with a disease that is epidemiologically determined only by excluding all other possible conditions) that my November meningitis, my eight-month bout of headaches and sea-sicknesses, my problems with memory and balance, my facial numbness, and now my pituitary problems all began as a flare-up of neurosarcoidosis.

Part of what makes the wizard special is that so many people travel to the marvelous land of Cincinnati to be treated by him. He also collaborates with other major sarcoidosis research centers, so he has more raw data about the disease than anyone I’ve met before. He could tell me that one out three patients responded to X drug, or nine out of ten to Y infusion. While he’s honest that in terms of precision much of sarcoidosis treatment is akin to throwing darts at the board with your toes while fending off a rabid squirrel (my image not his), he had more raw numbers and more insight than I’ve encountered before. The wizard could even speak to the difficulty in monitoring sarcoidosis with current technology. He said it’s totally (and maddeningly) normal for brain scans to show nothing one day, inflammation a month later, and nothing again another a month later—all while your symptoms remain the same. He could tell me that sixty percent of MRIs of organs where there’s biopsy proven sarcoidosis come back normal. The wizard seems to have his fingers in many different pies. He works with pharmaceutical companies to test new drugs’ efficacy in treating sarcoidosis; he collaborates with other branches of medicine to see if drugs designed for, say, cancer or rheumatoid arthritis, might also work for sarcoidosis; and he’s even close to completing a protocol for making MRI a more effective tool in detecting sarcoidosis.

The wizard not only had interesting statistics and multi-disciplinary credentials to offer. He also had a few ideas on how to blast this disease out of my head (again, my word choice, not his). I’ll be starting a six-month course of Cytoxan, an infusion chemotherapy drug next week. If I tolerate this, he’d like to add Thalidomide (yes, the same Thalidomide that caused serious birth defects in the babies born to women who took the drug for morning sickness in the 1960s; since its rocky inception, though, the drug has proven effective in fighting specific types of leukemia, leprosy, and some forms sarcoidosis.) He’s hopeful the Thalidomide will not only make me an ideal candidate to work in a leper colony, but also knock out this god-awful headache. If it does, he’ll quickly taper me off the prednisone, then stop the Remicade, and finally the Thalidomide and Cytoxan.

A plan! A wizard! A city full of not munchkins but medical minds! Next year I could be in total remission! I had found a doctor who was willing to communicate with me between visits, who was eager to coordinate my treatment with my Montana physicians, who had ideas about making me well. Well—a word I hadn’t dared even think for several months. For the first time in a long time, I felt hopeful. Jay and I went out to celebrate. We slurped down bowls of pho from a decent Vietnamese place and set off across the darkening city streets to find dessert.

What happened next I cannot explain. I mean, I can tell you the medical facts: ankle surgery nearly twenty years ago undermined structural integrity of my right ankle; I probably have sarcoidosis in the ligaments as well as in the bones in my right foot; my extra weight has strained all my joints, including my ankle; and years of prednisone have weakened my ligaments. The combination of these factors meant that mid-stride, with thoughts of biscotti on my mind, I heard a pop, as distinctive as a champagne cork emerging from the bottle. I fell. I had no choice but to tumble down on the hard concrete. I couldn’t get up. The ankle immediately swelled to about five times its normal size. After eight hours in an inner-city emergency room (for us Montanans, a cultural experience not too far from jetting into Oz via tornado), I was sent home—in this case, to the hotel—on crutches and told not to put any weight on the foot. A follow-up visit with the Montana orthopedic foot specialist confirmed that I had spontaneously ruptured all the ligaments (and maybe a tendon) in my right ankle. In my immune-compromised state, surgery is out of the question. The thing is immobilized (yet again) in a big, black orthopedic boot. I’m not even allowed to start physical therapy for three more weeks.

Why this happened on this first day of hope is what I can’t make sense of. I try not to believe in a punishing divine force, but when I was told to expect three months of pain and limited mobility, I felt sort of like I was being persecuted by my very own personal storm cloud. I remind myself that events unfold whether or not we want them to, whether or not the timing is right. I’m trying my hardest to be graceful, to use the green tendrils of hope that were unfurling in my tight chest as a way to make it through the crappy ankle situation and the upcoming new treatments. I’d like to say that I’ll just put one foot in front of the other and walk through this with aplomb. But it’s more likely I’ll be shuffling. And that’s OK too.

Thank you for the many kind comments and e-mails to my previous, bleak posting.  As those of us with on-going illnesses know all too well, sometimes the street lights go out in chronic town.  And the house lights.  And the night lights.  I fumble in the darkness, peer into blackness and see strange and terrifying shapes.  Although I believe it is essential to look at the darkness, I can look too closely.  And this is just as devastating as if I went outside and stared at the sun.  You readers, along with all you people in my life who prop me up and listen to me cry on the phone or watch me cry into my pillow, catch me before I’ve gazed down into the inky abyss for too many days and lost my ability to truly see.

In a few hours, I will arrive in Cincinnati, Ohio, assuming all goes well with my airplanes.  I have lost my connection with the doctor I saw in Philadelphia.  She had a new baby, and was working full-time outside the medical center where I saw her for the sarcoidosis clinic.  At first I felt abandoned.  Now, with the help of those who pull me back from the darkness, I’ve realized that in this loss, there is opportunity.  I am going to meet with a doctor renowned for his work in sarcoidosis.  While my Philly doctor was more conservative (prednisone, prednisone, and would you like some more prednisone with that prednisone?), this guy does more research on new therapies for sarcoidosis—especially for cases like mine, where the disease has affected multiple organs and isn’t responding well to conventional treatments.

I don’t know what I will think of him.  I don’t know if he can offer me anything.  I feel a little like Dorothy on a pilgrimage to find the Great and Terrible Wizard of Oz.  But, like her, I figure it’s worth following this path to see him.  After all, she made it home, safe and sound, even though he turned out to be a humbug.

So, keep your fingers crossed for me.  That I have safe travels, that this new doctor has new ideas, and that these new ideas work.  Or, at the very least, that I find my way home and see the light shining all around me.

I awoke today at 3:30 PM, after falling asleep sometime around midnight. If the early bird really does get the worm, I’ll be dining on dirt today. Unfortunately, this late rising is nothing new. I don’t know if my fatigue is caused by my disease (chronic, multi-system sarcoidosis, just in case any newcomers are tuning in) or my treatment (a toxic brew of prednisone, Remicade, and Imuran—an unholy trinity of immune suppression) or my sleep disorder (central sleep apnea—which I’ve just begun therapy for), but it’s all too familiar.

Whatever the reason, the day feels finished before I’ve even rolled over and cracked an eyelid to check the time and gasp at how late I’ve slept. Once I’ve swilled enough coffee to force open my other eye, there’s hardly any time to write, keep up with friends, exercise, go to one of my ubiquitous medical appointments, cook dinner, or say hello to that guy called Jay who’s been my husband for over ten years, but who I don’t see a lot of lately what with all my sleeping.

Or to be a Mom. Today’s a weekend day, which means no nannies showed up to entertain my four-year-old son, Andrew, who wakes up before eight with an explosive amount of energy. I am so conked out that Jay says I don’t even stir when Andrew jumps on the bed right next to my head and yells in my ear. Even though he works more than forty hours a week for two different government agencies, Jay has “Andrew duty” on the weekends. I know Jay is exhausted, though I also know his fatigue is different than the bone-gnawing tiredness that overwhelms me and makes moving my fingers around on the keyboard feel akin to rearranging large rocks. My guilt for all that Jay does (and I don’t) is a given in my life now. I carry it with me, sort of like a new organ. There’s my guilt, right next to my appendix. I’m surprised it hasn’t shown up on the imaging of my frequent CT scans.

Jay swears he doesn’t mind taking charge of Andrew on the weekends. They do fun things together. Today, for instance, Jay took Andrew to a T-Ball (Little League baseball for the pre-K set) camp run by our local minor professional league. Andrew got to practice catching and throwing with a “real” baseball player named Paul. Then Jay and Andrew strolled through the farmer’s market so that Andrew could say hello to all the “regulars,” particularly George, a woodworker who makes rocking horses, along with rocking helicopters, bears, airplanes, and cars and lets Andrew test drive them all because Andrew is well-mannered and gentle aboard George’s inventions. Andrew and George are buddies because Jay and Drew have been visiting the market nearly every Saturday for the past three years while I, on the other hand, snooze away the day. After the farmer’s market, my boys came home for a quick lunch and then bicycled off to the water park, along with Andrew’s “big-girl” buddy and sometimes babysitter, Anna. Now that he’s too large to be towed in a trailer behind Jay’s bike, Andrew uses a “tag-along”—a quasi-tandem that hooks on to Jay’s bike and that allows him to pedal along with Jay. They came home for lime Popsicles right around the time I was downing my coffee.

This wasn’t how it was supposed to be. No matter how many lectures I deliver to myself about accepting the life I have and being thankful for every moment I have to live with Andrew, I can’t stop feeling like I’ve been cheated out of being the kind of mother I expected I’d be. Because I was diagnosed with sarcoidosis when Andrew was only three months old, this horrible disease has shadowed my life with him. When I look at pictures of him standing atop Mount Helena with his Dad, or skiing down a hill with his Dad, or swimming with his Dad, or riding on the tag-along with his Dad, or kayaking across a mountain lake with his Dad, or attending a kiddie birthday party with his Dad, I feel a stab not only of jealousy that my illness has prevented me from joining them, but of pure grief that my son, who will likely be the only child I carry within me and bring into the world, never knew me as I was. I was the one who was supposed to teach him how to ski; I was the one who was supposed to pedal with him up the steep streets of Helena; I was supposed to accompany my boys to the mountain top. I repeat: this wasn’t how it was supposed to be.

It’s not just the fatigue that keeps me from participating either. Because of the sarcoidosis in my bones, my foot is swollen and painful, so much so that I can’t pedal a bike or walk more than a few steps without limping. The weight I’ve gained on prednisone combined with the disease’s effect on my lungs means that getting around the house feels like a hike up a mountain. I’ve been forbidden to enter a swimming pool (too many bacteria for my immune-compromised body) or from hanging around children besides my own (again, too much risk for infection). I can’t drive Andrew to the park to play with him because I can’t drive thanks to the vertigo and dizzy spells that persist because of the neurological involvement of the disease. Even reading to the boy is complicated. I can manage a few pages before the vertigo begins to make the words roil on the page. We listen to kiddie books on tape together, but he prefers the real thing and wanders out of the room after a few minutes.

I repeat to myself a thousand times a day that I am doing the best I can, that I have no choice in the matter. “Do you hug him and love him?” a friend asked me? Yes. “That’s what he really needs from you,” she said. Maybe. But I need a lot more from me to feel like I’m involved in my only child’s life. I want him to know the strong, beautiful woman who could carry seventy pounds on her back for a twenty-mile hike. I want him to know the woman who kayaked a hundred miles, who ran up the dozens of steps of Angkor Wat in fierce jungle heat in Cambodia. I want him to know the woman who slept for eight hours (and often a whole lot less) and still had the energy to work, to exercise, to read, to dance. I want him to know the woman who saw the doctor twice a year, not twice a week. I want him to know the woman who traveled around the world. I want him to know me. But I am not me anymore.

I tell myself that I am present in my son’s life, much more so than many other mothers. I do give him hugs and love; I talk to him, and I know that this means something. The other day we talked about Shakespeare (“Why is Romeo and Juliet a sad story?), politics (Mommy, why don’t you like George Bush?”), our solar system (“Why does the sun keep burning?”), and the manufacturing of pharmaceuticals (“Mommy, how do they make your medicine?”). If I can drag myself out of bed, I’ll have lunch with him and the nanny. I watch the nannies like a hawk (or as much as a hawk that sleeps three quarters of the day can) and make suggestions for activities. I tell myself I’m not a bad mother—that it doesn’t matter to him who teaches him to ski, swim, and bike—he’ll just know how to do these things when he’s older. I tell myself that he’ll grow into a compassionate man because he’s experienced illness and suffering first-hand. I tell myself a whole passel of things I sometimes, sort of, half-believe. And then, I put my head down and on the closest table or desk or countertop (or, more likely, pillow) and weep because time is passing too quickly. This amazing creature I carried within me next to my heart is growing up and growing away from us—and I am sleeping through it. I am sleeping through the smell of sunshine on his skin; I am sleeping through him rolling across the grass of the soccer field in the middle of a game (I did, however, see the video Jay filmed on the very cool camera his mom got him); I am sleeping through him taking in the panorama of his town from atop a mountain. I am sleeping through him running in the sprinklers, shrieking and giggling as the cold water meets his flushed little body. I want me back. I want these four years back. I want to give my sarcoidosis back to the winds of fate that brought it to me.

I keep my tears from Andrew. I keep them from most people because I am, in many ways, being utterly solipsistic. I am lucky to have such a wonderful son; I am lucky to have a husband who has met the challenges of my illness head on, who has risen to the occasion and become the kind of father and partner most women dream of having. I am lucky to have our two families helping us pay for high quality childcare so I can sleep during the week without worrying too much. Still, I do cry, self-indulgent though it is.

I cry for the day that has passed while I slept.

Pardon my absence from the blogosphere. I’ve been sick. I’ve been tired. I’ve been sick and tired. The novelty of this has worn off for me—and sometimes, I worry, for you, as well. I want to post a happy entry. I want to bring you news of positive changes. But, it is still just me, sick and tired.

There is, however, some medical news. After months of griping about my sweat attacks, mood swings, and other issues that I will delicately categorize as “related to my reproductive functioning,” my doctor rechecked various hormone levels and found that I had virtually no estrogen in my body and that my pituitary gland had stopped producing the hormone. At 36, I am officially in menopause. As if it wasn’t news enough that I have less estrogen than an eighty-year old woman who has gone off hormone replacement therapy, my doctors have begun to fret that the source of the estrogen problem isn’t simply my long-term use of prednisone, but rather that the sarcoidosis has begun to nibble away at my pituitary gland. Why not? It is, after all, the pituitary is just a quick hop, skip, and jump from my cranial nerves, where the disease is already well-established. And one thing my case of sarcoidosis has made clear to me is that it has boots made for walking and it likes to use them.

I sleep about thirteen hours a day and awake still exhausted. After having another sleep study a couple of weeks ago, I learned that not only do I have severe sleep apnea (which I personally attribute to becoming fat and developing loathsome rings of flesh—which I affectionately refer to as “my wretched goiter”—around my neck), but I also have episodes of non-apnea related hypoxia. OK, let me try that in English. Sleep apnea occurs when the soft tissues of your airway collapse as you sleep; this means you don’t get enough air (and thus oxygen). The result is crummy sleep, along with extra strain on your heart, which has to pump harder for those interludes of less oxygen that take place before your brain rouses you from sleep to resume breathing. To treat sleep apnea, you need to use a machine that gently (or not so gently, in my case) blows air down that collapsible airway to make sure it stays open. I already knew I had sleep apnea; in fact, I own one of the machines. However, I was instructed by my doctors to discontinue using it because they felt it was contributing to ongoing sinus infections, to which I am doubly susceptible because I am so immune compromised.

But this latest sleep study revealed that I also have long periods in which my airway stays open (i.e. non-apnea) but my oxygen levels still drop below 70 percent. I believe the clinical term for this is “not a good thing.” Oxygen saturation levels below 90 percent are considered dangerous. So now I am using nighttime oxygen, while awaiting an additional sleep study, in which they will outfit me with the latest and best sleep apnea machine and accompanying mask and oxygen to see how I do. I had hoped the oxygen at night would help me feel less tired. It doesn’t. But I do have my very own compressor next to my bed and twenty-five feet of neon green tubing. As much as I love my compressor and its constant thrumming, I’d like to know why I’m experiencing oxygen desaturation—not only at night, but also during periods of mild exertion. As with my pituitary dysfunction, my doctors speculate that my sarcoidosis is busy in my lung tissue and that this is the cause of my non-apnea breathing woes.

Shall I go on? Well, it’s my blog, so I will.  I continue to limp because of the (theoretically) sarcoidosis-related bone issues in my foot. A trip to the foot-specializing orthopedist revealed that the sarcoidosis lesion is no longer present (or at least visible) on the bone in my foot. Which might sound like good news, but the entire area still remains swollen and sore. I suppose I should be grateful that walking around the house uses up all my oxygen, because that’s about all the exercise I can do without causing my foot to balloon and throb.  Even though the contrast between my highly mobile disease and my own now pretty fixed in place existence can be a little hard to take. I used to be a world traveler, but the illness’ impact on my brain means that driving across town gives me vertigo.

Sometimes I envision my sarcoidosis as a restless little Napoleon, always on the lookout for new organs to conquer. Once it has toyed with my liver or my heart, it grows bored. I can almost feel it impatiently tapping its fingers on the table, as it eyes the Gray’s Anatomy map of my body and plots its next campaign, maneuvering between the batteries of Remicade and Imuran and prednisone I try to lay in its path. It has kept its military bases in my liver and on cranial nerve number eight (the source of my vertigo and perpetual headache), but otherwise sends its troops where it will. Where’s a frigid Russian winter or a Lord Wellington when I need one? Switching centuries (if not metaphors, entirely), I feel like one of those 1930s Ethiopians shaking my spear at the Italian bombers flying above me.

So, there’s my update. Sarcoidosis here, sarcoidosis there, sarcoidosis everywhere.

I’ve been in a funk. And I’ve been feeling like crap. Neither of these are medical terms, I know, but they help explain why writing—or moving, or making the bed, or talking on the telephone—all feel like monumental efforts more in keeping with summiting a mid-sized Himalayan mountain than accomplishing the very minimal tasks of daily living.

It used to be (back in my pre-sarcoidosis days) that when I fell into a funk, I could use activity to jar myself out of my mood. A brisk walk or hike or a bike ride on a dirt road rutted enough to knock loose the funk was all it took to remind me that I had much to be happy about and little to fret over. Even when I was nine months pregnant with Andrew and the cumulus clouds that precede depression moved in, I would climb aboard a stationary, recumbent bike at the gym. Twenty minutes later, I felt re-charged, calmer, and paradoxically, more energized.

My other funk-busting strategy in the halcyon days before I moved into chronic town was to find people. I am, by nature, a loner. I like quiet, seek the corners (preferably behind plants) at large parties, and can endure a limited amount of social interaction in one day before feeling overwhelmed. Still, I love meeting with a good friend and gossiping over a cup of coffee. Lunch dates with people working out in the world (instead of typing away in a home office like me) took me out of my funkified head and left me revitalized.

Ever since I’ve had sarcoidosis, I’ve tried variations on these two strategies and have come up short—and still in a funk. I’m learning that what feels like depression is really the all-consuming fatigue that characterizes my disease. Nevertheless, when my mood turns sour, I still try to pedal (albeit for much shorter distances) on my stationary bike. However, instead of feeling rejuvenated at the end of the workout, I feel bludgeoned. Every day, I look at the bike in my room, and a little voice whispers inside my head, “You’d feel better if you rode that.” I argue with the voice. “Every bone and muscle in my body hurts; my head is pounding; I’m dizzy; I’m tired; I’m so short of breath.” Lately fatigue and more severe manifestations of the disease (along with what my husband Jay calls common sense) have won out and I haven’t forced myself through a workout. But I’m left with the funk, along with a feeling of failure for not having pedaled my way to a brighter frame of mind.

Meeting with friends is equally complicated. Talking on the phone too often leaves me with a screaming headache. (Interestingly, phone conversations—as opposed to face-to-face ones—leave the left side of my face totally numb.) I’m on so many different varieties of immunosuppressants that venturing outside the house to meet with friends feels like I’m contemplating cliff diving instead of meeting a buddy for a cup of joe.

This sick and tired dog needs to learn new tricks. I remind myself of our beloved dog Calypso, who, after having surgery, had to wear one of those plastic Elizabethan-looking collars to prevent her from licking her wound. Once home from the vet’s office, she had a terrible time navigating the house. She would misgauge the size of a doorway and walk into a wall. Bonk. Rather than back up and re-position herself, she would simply take two steps back and walk into the wall in exactly the same place. Bonk. This probably would have gone on for hours if Jay or I hadn’t intervened and guided her through the doorway.

I need someone to guide me through my own doorway of disease and depression. The old ways don’t work. They simply exhaust me more than they help me. If I could stop walking into the same wall, perhaps I could figure out new ways to cope with the funk. Bonk.

This evening, my niece (and goddaughter), is getting confirmed in the Catholic church. My mother is there with her, as is my sister. I am not.

When my niece was an infant, I worked for a few months as her nanny. My brother and his wife egregiously overpaid me to play with their child. I loved almost every moment I spent with my niece. It was through the acts of caring for her—changing her soiled diapers, tickling her tummy on the changing table, re-reading the same picture book fifteen times in a day, spooning sweet potato mush into her mouth only to have her spray it back on me with peals of laughter, pushing her stroller through the hot, deserted suburban streets, ripping off her socks for yet another round of “This Little Piggy”—that I realized I someday wanted to have a child and that when I did, I could manage the practical aspects. Now, she is a teenager, and, after tonight, she will be an adult in the eyes of the church.

I want to be there with her tonight. Even as late as last week, I toyed with the idea of flying or driving so that I could sit in a pew with my family and watch my niece be confirmed. But I can’t. A drive to Missoula and back (for a total drive time of under four hours) two days ago to see a specialist about my bone sarcoidosis made it clear that I couldn’t. I’m still recovering from the Missoula trip. Something about the minute movements of my neck in the motion of the car set off testy old cranial nerve number eight, and I’m still nauseous, dizzy, and half-blinded with headache.

I reason with myself that not being there isn’t such a big deal. “It’s not like I could do anything if I was there, right?” I ask myself. This is true. I wouldn’t do much if I attended her confirmation—just like I wouldn’t have done much at my husband’s brother’s wedding, or at my husband’s father’s marriage, or at the opening of my mother’s museum art show, all of which I missed because of my illness. We come to these public events not to do something, but to bear witness to the turning points in the lives of those we love. If I could be there, I could convey to my niece that she matters to me in ways that transcend any message I’ll write on the belated card I’ll send her. I’m adept with words, but they fall so short of human presence, of the connection of the flesh. I feel robbed by my disease to be present to confirm my love of her, to confirm my role as her godmother, to confirm myself as a part of her life, to confirm a bond that began with sweet potatoes and will last, I hope, a lifetime.

In the ceremony tonight, she’ll confirm her membership in the church her parents chose for her at birth. At baptism, she was a passive recipient; her parents and her godparents made vows standing over her. Tonight, she’ll use her own voice to make her own commitments. I’ll send the aforementioned card; I’ll call her later to congratulate her. I won’t have any words of wisdom for her. What I will say is, “I wish I had been there.” And there is a sort of confirmation in that.

It’s been a rough few weeks on my avenue in Chronic Town, and it’s been difficult for me to find the energy to write.

If I could make the healthy world understand only one attribute of living with a chronic illness, I would choose fatigue. Yesterday, I napped for seven hours (yes, that’s 7), woke up long enough to take my evening medications and slept for another eight. And today, I’m exhausted. I slept through a Remicade infusion, fell asleep in the lab at the hospital waiting to get my blood drawn, fell asleep listening to a book on tape. This level of fatigue—this gnawing, persistent, cry from my bones to go to bed and sleep—can last for weeks.  I’m hoping this latest bout of deathly tiredness only persists for a few days.

Partly I’m to blame for the exhaustion. I pushed myself hard to put together a book proposal. I had to work the equivalent of eight-hour days for about two weeks. Sadly, this crushed me, though I am glad to have the proposal done and proud to have been able to produce a 40-page document I can send to agents or editors. I’d really like to turn the meat of this blog into a book, and I needed the proposal to do so.

We had a couple of visitors, and even though I have given up cleaning, cooking, and fussing for guests, it still requires more energy than usual just to be upright for a greater percentage of the day than I usually am.

The real reason for this latest bout of exhaustion, though, is that somehow my sarcoidosis has become active again. How I can have a documented flare whilst receiving the maximum dose of Remicade along with a hefty dose of prednisone is making me a genuine scientific curiosity. I’ve avoided having sarcoidosis involvement in my lungs until now. My once perfect pulmonary function tests aren’t so perfect anymore. I huff and puff walking around the house. My liver tests are a mess, my heart is skittering again, and the large granulomatous lesion on my foot bone is back. I continue to have the headaches and vertigo caused by the neurosarcoidosis. Consequently, my last few days have involved very little besides limping, huffing and puffing, listening to my heart skitter, tilting with vertigo, seeing doctors, and sleeping.

I shouldn’t forget worrying. I spend plenty of time doing that. The White Coat Brigade wants to add a third drug to my immune-suppression mix. It’s called Imuran, and I think it is mostly used to treat organ transplant patients. But it does tamp down another part of my immune system, which is believed to be the source of my disease. I have the prescription, but I haven’t filled it yet. Jay did a preliminary Internet search on Imuran, and one of the potential side effects is cancer, especially when it is mixed with the anti-TNF agents like Remicade I’m taking.

Cancer is a scary word. But, then, so is the thought of sarcoidosis running rampant and a potential lifetime of sleeping eighteen hours day. I’ll do some mental weighing, putter around on the Internet to see what I can learn, and probably end up taking the drug—at least for a few weeks. But, now, I’ve got to go back to bed. I’m so tired.

“I don’t know what’s wrong with me,” the girl at the coffee shop counter said. “For the past few days, my stomach has really been bothering me.” I watched her hands as she steamed the milk for my latte. How close to the milk—my milk—were they? “Well, maybe you have that Norovirus thing,” her co-worker said. They were talking about the Norwalk virus, a gastrointestinal bug that has been running rampant through our mid-sized community. It causes vomiting, diarrhea, stomach cramps.

Without realizing it, I found myself inching away from the counter, from the sleek-haired girls who were likely chock full of vomit-causing parasites, from the lovely cup of frothy coffee I had ordered. I hadn’t paid yet. I could run out into the cold, clean air. But Jay and Andrew were with me and we were celebrating the fact that I had actually sent off a book proposal loosely based on this blog. I couldn’t just dash off and leave them there. “Crap,” I thought. “We need to develop a signal, a code to bail from a disease-infested environment.” Something along the lines of when I touch the side of my nose and say, “I wonder if the President’s tummy ever gets upset,” that means we are threatened by a gastrointestinal bug. If I scratch my head and say, “I wonder if the cat was coughing up a hairball or if she has a cold,” that means a respiratory infection is lurking nearby. And then, we run.

But, code-less, we ended up staying and enjoying our coffee. I, of course, pulled out one of the eight thousand bottles of hand sanitizer I keep stashed in my pockets, in my purse, in the glove box of the car, and in every room of the house. I poured about half a small bottle on my hands and made Jay and Andrew use the rest. I also pulled out an anti-bacterial wipe and swiped the outside of the cup and the wood counter in front of us. People were staring. Jay and Andrew didn’t bat an eye, because they are used to this protocol. However, I did decide not to mention the “RUN AWAY” code at that moment. They both have hands that are cracked and chapped (Jay’s to the point of bleeding) from so much hand-sanitizing and washing. I let Jay savor his coffee and Andrew the trinket we had purchased for him before I started in on another germ talk.

We live in a world that looks friendly and clean. It is not. Every surface is crawling with drops of flu virus launched from the snot of someone’s sneeze. Or stomach virus left behind from someone who didn’t wash their hands after using the bathroom. Our vegetables are contaminated with fecal matter. Our chicken is laced with salmonella. And every time you touch something, you bring that nastiness onto your hands. Then it’s just a matter of rubbing your eye, brushing your nose, placing your lips on the rim of the coffee cup…and forty-eight hours later you’ll be retching over the toilet, or running a high fever, or coughing up green gunk from your lungs.

If you’re me, you’ll end up in the hospital. I am what the doctors nicely call immuno- compromised. Because the current theory is that sarcoidosis is caused by my body’s own immune system gone awry, the treatment is to ratchet down my immune system. I take lots of prednisone—so much that you might feel compelled to ask me for an acorn from one of my chubby squirrel cheeks—and I get monthly infusions of Remicade. Both of these drugs suppress different aspects of my immune system. The prednisone does something like bind up my white blood cells, while the Remicade works on shutting off my T-cells’ production of tumor necrosis factor (TNF). If I sound like I understand this, I don’t. I have tried plowing through scientific papers on the topic. I only get one out of ten words; that one word usually scares me enough that I wonder if I don’t have the Norwalk virus because I so urgently feel the need to use the bathroom. Cancer. Demyelinating diseases. Leukemia. Severe infections. Death. The take away message from these one-out-of-ten- words and from my chats with my physicians is that: 1) I am much more likely to get an infection than the average person; 2) Any infection I get is much more likely to become serious and turn into either a) pneumonia or b) sepsis; 3) No one can predict the long-term consequences of these drugs I take. I mean, the Remicade infusions are basically rolling out the red carpet for cancer. My body is like a sneaky teenager. “The parents are out. There won’t be any TNF around here for three hours. Bring on the malignancies.”

Since I am sick with chronic sarcoidosis and feel like crap most of the time, I’d prefer not to spend whatever few days of relative good health I do have contracting sepsis or getting acquainted intimately with my toilet. Hence, the hand sanitizer and the wipes and the hand washing. It might seem extreme. I wipe down Andrew’s library books with anti-bacterial, anti-viral wipes. When I steal trashy magazines from doctors’ offices (I have an impressive collection of People considering I don’t subscribe), I swab those pages with wipes and then sanitize my hands before reading. Whenever we return to the house, we wash our hands. It doesn’t matter if we just poured on the hand sanitizer in the car. We roll up our sleeves, make the water nice and hot, pump out the anti-bacterial soap, and, then, only after we have bubbles formed, do we sing “Happy Birthday”—usually to a Pooh character or to someone like Lowly the Worm from the Busytown books. Why “Happy Birthday?” Why sing at all? Or why not “Three Blind Mice?” According to my doctor, the time it takes to sing “Happy Birthday” is exactly the right amount of time needed to zap the microbes.

For the most part, I try to cut down on unnecessary errands that bring me out into the dangerous world. Oddly enough, I typically nix the grocery store, but spend half my life either in doctors’ offices or in back corridors of hospitals getting expensive tests—CT scans, PFTs, MRIs. (The medical establishment seems to think that giving bland procedures like “pulmonary function tests” sporty acronyms like “PFTs” will add a certain glamour to huffing and puffing into a plastic tube. PFT sounds like an attack helicopter or an invasion strategy. It sounds like war.) I know I am overly housebound when the prospect of going grocery shopping feels like an event. “Put on lipstick! Get out the curlers! We’re going to Safeway!”

While I’ll acquiesce to limiting my comings and goings, I won’t have my four-year old live a hermit’s life. We did pull him out of pre-school at the doctor’s insistence. But I make sure the babysitters take him to story-time at the library, to the park, and on play dates. Of course, I always call ahead to see if anyone in the potential play date’s family has coughed, sneezed, blown their nose, or had an upset stomach in the past week. And, of course, I always bellow after Katie or Andrea as they leave with Andrew, “Don’t forget to sanitize your hands and his hands.” “Yes, Rebecca,” they say, in the calm, but tired, voices of those who work for the mentally ill.

I’ll be the first to admit that sometimes I’m a bit extreme. A couple of weeks ago, Jay and Andrew caught the flu, not an unnamed bug but influenza. They had fevers above 103 degrees. They coughed and hacked and ached and were utterly miserable. “If you catch this respiratory flu, you’ll be in the hospital,” my optimistic doctor told me. “Take the Tamiflu and pray.” I stopped short of setting up a small Tamiflu shrine where I could leave burnt offerings for the medication. But I did sleep downstairs in a bed far away from Jay and Andrew’s contagious breath; I refused to let Jay leave his bedroom (once our bedroom, but now claimed by infection). If I entered the sick room, I went through a decontamination routine out of a science fiction movie. I am typically the nurturing type, so I had to reign myself in, remembering the doctor’s warning. So I cooked homemade chicken soup and left it outside Jay’s door. I talked to him on his cell phone from across the hall. I assured Andrew that I loved him desperately, but refused to cuddle with him. Maybe it was the candles and the incense at the Tamiflu shrine, or maybe my strict self-quarantine worked. But Jay and Andrew recovered—psychologically and physically—and I have yet to get the dread influenza.

Sometimes, when I compulsively scrub down anything that has come in contact with the world with an antibacterial wipe or when I pour several ounces of Purell into Andrew’s hand and encourage him to rub it all over his hands not just his palms, and a stranger catches my eye and slightly shakes his head, I wonder if I have crossed some line. Have I moved from being cautious of catching something to having a full-blown obsessive-compulsive disorder? Should I have wiped Andrew’s flu snot away? Should I let him wash his hands for a few seconds and not worry if we sing all of “Happy Birthday?” Should I feel guilty that my four-year old seems to fully comprehend the concept of germs and infection and the fact that Mommy can get really sick from stuff that won’t make him sick?

I am sure some people would say that I have gone overboard. Maybe the surgical masks I keep on hand (compliments of my most disease-conscious friend) are over the top. But then, these people haven’t had to watch their son’s small face crumple into despair and tears to learn that Mommy has to go back to the hospital and spend the night. They haven’t heard the choked sound of his tears when I talk to him on the phone from the hospital. “I want to come sleep there,” he told me when I was last hospitalized for pneumonia. I’d rather feel crazy than have my heart—and his—hurt that much. I want to be in his life, not locked away in a hospital bed or dead from sepsis. If I am making him slightly neurotic, so be it. If it takes me wearing a Hazmat suit, so be it. If it means I never stroll the aisles of the grocery store, so be it. If it means his hands are chapped, so be it. After all, it’s not all bad. He’ll be the hit of every birthday party with all his practice singing. Lowly the Worm and Tigger can vouch for that. He can belt out one hell of a “Happy Birthday” at the bathroom sink.