Travel Bug

June 10, 2017 at 4:14 pm (Uncategorized)

I’ve been writing this blog since 2006. I was scrolling through old entries the other day and realized how often I write about the hard parts of life in Chronic Town and that I’ve given short shrift to some of the wonderful aspects of my life since I was diagnosed with sarcoidosis thirteen long years ago. One of the consistently good facets of my life has been travel.

Since my diagnosis in 2004, Jay, Andrew, and I have been to Thailand, Iceland, Canada, China, Scotland (twice), Mexico, France, and Costa Rica, as well as to a good number of cities in the U.S. We are preparing for another big trip this summer. We’re heading to the Azores—a group of islands off the coast of Portugal—for a couple of weeks. Later on, we’re planning to explore the Washington coast.

Traveling means so much to my family. Of course, there is the joy of seeing new places. We live in a small city with almost no ethnic diversity. It’s important for us to show Andrew that it’s a big world out there with a lot of different kinds of people. Traveling also breaks us out of ruts and routines. It’s invigorating to take a break from daily life. But I think the most important reason that traveling is essential to my family is that it brings us together. As much as we’d like it to be otherwise, the challenges of living with my chronic illness separates us from one another. I’ve mentioned this before, but I spent roughly six of the last twelve months in the hospital. We tried to have dinner together every night was in there, and Jay spent every minute he wasn’t at work by my side. But it was still an incredibly isolating experience for each of us. When we leave the country, we get to leave all that behind. There are (hopefully) no White Coat visits or hospital rooms waiting for us abroad. There’s just the three of us—together—experiencing a new place.

Some people find it hard to believe that I am able to travel with a chronic illness. The implication is that if I’m really so sick, how is that I’m able to caper all around the world? I don’t travel when I’m in a rough patch. We’ve had to cancel more than one trip because I’ve been flat on my back in a hospital room. I also am exceedingly careful when we’re away not to overdo it too much. I definitely push myself, but I also make sure I take rest days in bed when I need them. For the most part, I’ve been very lucky. I haven’t had a major health breakdown abroad. I came close in China. A combination of food poisoning and air pollution nearly put me over the edge, but I was able to make it home. Since that trip, we’ve opted to stick with trips to more developed countries, so that if I do fall apart, getting quality care will be easier.

There’s always a risk to leaving home. For me, it’s that my health will fail and I’ll have a hard time either making it home or receiving the care I need when away. In a lot of ways it would be easier just to stay home. But I can’t. I need to remind myself that I am not just someone with a chronic illness. I am also a woman who can travel the world.

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Bodies in Motion

June 2, 2017 at 12:29 pm (Uncategorized)

It’s been a great few weeks. I’ve been feeling better and better and therefore able to do more and more. I’ve been using my office space downtown working on my book, which I’m now about halfway done with. I’ve been meeting friends for lunch. Last week, I reintroduced the gym into my life. I’m only able to ride the stationary bike for twenty minutes at a time, but it’s a start. I’ve also returned to the kitchen and am cooking (almost) my fair share of dinners. Tomorrow, I hope to build on this momentum—push myself to work an extra twenty minutes on the book, ride five more minutes on the bike, and make pad Thai for dinner.

And then, it all comes to a screeching halt. Thursday is treatment day. It’s time for my monthly all-day infusion of ivig. I need to get this medication since, probably because of the sarcoidosis, my immunoglobulin levels are dangerously low. So I get this monthly boost not only to fight the sarcoidosis, but also so I don’t catch every bug in the universe. Before the White Coats figured out I had low immunoglobulin, I got pneumonia four times in three months. But as much as my body needs the ivig, it fights getting it. It takes 200 mg. of Benadryl during six hours of infusing to prevent me having an allergic reaction to the infusion. That’s a lot of Benadryl. It leaves me dopy and confused for a couple of days; the treatment knocks me back into bed for at least a few days with flu-like symptoms and a raging headache. I hate treatment days.

For me, one of the most challenging aspects of living with a chronic illness is the lack of momentum. It seems like just when I’m getting into a positive routine, it’s time for another treatment, or the disease flares, or something stalls me in my tracks. I am very much a creature of habit. I see this most clearly when it comes to my writing life and exercise. It takes a lot of willpower for me to get into a routine with both of these. But once I’m on a schedule, I seem to keep rolling along.

I’d like to get better about picking up my routines again as soon as I feel better after a treatment day. I lose precious time getting back into daily life by procrastinating. I don’t think this is unique to me or to chronic illness. A good friend is dealing with aging parents, who are often in crisis. She has no control over when she has to make a trip to help them, when her momentum gets stalled. Life is a process of rebuilding. I know that. But it’s still hard.

What are your strategies for dealing with a loss of momentum? How do you get going again after you’ve been stalled?

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Relearning Health

May 16, 2017 at 2:58 pm (Uncategorized)

I’ve been out of the hospital for a couple of months now. The symptoms that landed me in the hospital have thankfully abated. There’s been a lot less pain and vertigo. I’m able to drive, to write, to be up and about for a few hours each day. It is wonderful. But I’m also finding it incredibly challenging. It’s like I’ve forgotten how to be healthy.

I’ve become very skilled at being sick, what with all the practice over the past thirteen years in Chronic Town. As the sarcoidosis has hopscotched across my body—from lungs to heart to liver to joints to bones to skin to brain—I’ve had to learn to give up aspects of my life that once gave me pleasure and sustained me. Regular exercise, trips to the grocery store, family dinners, writing, cooking meals, TV or movies with Jay. I hunkered down and learned to let go. You can survive with a pared down life, and I got to be pretty good at it.

The past twelve months have been particularly challenging. It’s hard to believe, but I spent fully half of the last year flat on my back in the hospital. I went from having narrowed life to an empty one. But I adjusted, eking out an existence in the hospital. I shuffled around the building with my IV pole for a walk every day. I listened to countless audio books. I made sure to have questions ready when the doctor made his rounds twice a day. When you spend half a life in the hospital, you are, for all intents and purposes, a professional patient.

So what happens when you come home and start to feel better? Turns out, it’s quite an adjustment. I developed patterns and mindsets based on being sick—on letting go and pulling in. Every morning, I was proud that I could shuffle out of bed and make myself breakfast and drink the cup of coffee Jay made for me. Afterward, though, it was time to go back to bed and lie down, plugging in to an audio book or podcast. Then I’d try to get up and about a little after lunch. Maybe I’d try to call my mom, read the newspaper, or send a couple of texts to friends. I couldn’t overdo it, though, because I wanted to be conscious when Andrew got home from school and have a modicum of energy for a quiet evening with my family. Repeat, ad infinitum.

Except it wasn’t infinite. Not only am I now in less pain, I’m finding that I have more energy. But for a little while, I still caught myself habitually shuffling back to bed after breakfast. It’s like I forgot that I could head from the breakfast table to the shower and then to my office to work. I didn’t remember what it was like to have the stamina to meet friends for coffee, to work, to cook dinner for Jay and Andrew, and still have enough left over to read in bed before sleeping.

This being-more-well thing is a balancing act, though. I still don’t have the physical resources to work for a full day. If I overdo it, I’m exhausted and have a resurgence of pain and vertigo. I need to listen closely to my body—something I continue to find challenging, even after so many years of practice.

But practice is what it comes down to. Life changes every day for all of us, and we have to learn to live amidst constant flux. There’s no way through it but to learn it. And that’s what I’m doing these days—learning to flex my muscles and push myself again. I’m like a toddler with wobbly legs. But I’ll get there.

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May 1, 2017 at 1:51 pm (Uncategorized)

For years I’ve been at war with myself. I’ve been fighting sarcoidosis. I’ve envisioned myself in mortal combat for my life. It’s not just me that’s been thinking about warfare. I’ve had doctors talk to me about killing the disease, and friends encourage me to keep fighting. For the 13 long years I’ve been in Chronic Town, I’ve kept at, getting medication dripped into me that promises to be ferocious. Just a few days ago, I got an all-day infusion of Cytoxan—literally “cell killer”— in an attempt to manage yet another flare up of this damn disease.

As the IV dripped into me, my mind wandered. It has a tendency to do this on infusion days because I need horse doses of Benadryl to tolerate the toxins they call medicine. Cell killer. Just whose cells are getting killed? The idea, of course, is both to suppress my immune system that has gone awry and to target fast-growth cells that build the troublesome little balls called granulomae that are the hallmark of sarcoidosis. Usually I stop there. I’m a good patient. I follow doctors’ orders, swallow my pills on schedule, and have never once in nine years missed a chemo appointment. “You’re a fighter,” I’ve had more than one doctor tell me in praise. Part of my self-imposed job description has been not to think too hard about just whose cells my cell killer is obliterating. I’ve kept my head down and fought on.

But lately I’ve been picking my head up and taking a look around me. The nature of autoimmune diseases is problematic, even as a concept. It’s one thing to be invaded by a foreign attacker, say, bacteria, but quite another to have one’s own body turn against itself. How do you treat that? Strip away the clinical language of “suppressing an overactive immune system” or “targeting fast growth cells” and you are left with the idea of going after yourself, a kind of “we had to destroy the village in order to save it” type of thinking.

I’m tired. Being at war against oneself for thirteen years is just plain exhausting. Nine years of chemo is brutal. I’ll admit there are days when I intend to give up, to call it quits on all “treatment” options and let the proverbial chips fall where they may. Sometimes that sounds like the easiest path. But what is easiest is not always best. No, I am looking for something more nuanced than being a quitter. I’m not ready to consign myself yet to a life wholly bedridden or to death. I just want some peace.

How can I find it? I think it starts by changing of how I conceive of the disease. I’ve had enough of the language of warfare when it comes to my body. When I envision every day as a “fight” for normality, for a modicum of health, I’m simply wearing myself down more. I believe language matters. And the little voices in the back of my mind need a new script. No more battling, grinding, struggling, attacking, fighting—or, at least less of it. I’m aiming for way of living with this disease. After all, the disease is of me and in me. It pulses in time with my heart, flows through my veins. Living in a state of civil war for the rest of my life just isn’t possible.

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The Body Eclectic

March 22, 2017 at 9:38 am (Uncategorized)

I’m in a bigger body these days. I gained thirty pounds during my last three months in the hospital and thirty more during the three month hospitalization before that. That’s sixty pounds. Which is a lot, but then I’ve gained and lost dramatic amounts of weight before. What makes these extra pounds—particularly the last thirty—feel so cumbersome is that I gained them so quickly, all while flat on my back in a hospital bed. I didn’t get accustomed to my new body gradually over time, gaining a few pounds here, a few there. It’s as if some evil-eyed fairy godmother waved her warty wand, and voila, I’m fat again. I’m clumsy in my new, stretched out skin. I gauge spaces I might fit into based on mental dimensions that no longer match my physical ones. I’m constantly bumping into things, knocking over things as my brain scrambles to recalibrate. I also catch sight of myself in mirrors and do a double take. I’m not used to my wider face, the swath of flesh under my chin. With a pause, I recognize myself.

Surprisingly—for me—I haven’t fallen into full-bore self-loathing (well, most of the time.) What I feel more acutely is melancholy for what I cannot do with this extra flesh. A few months ago, I was hiking up to seven miles and even summitted Mt. Helena, the 6,500 foot mountain that looms above my little city. I was going to the gym regularly and riding the bike for an hour at a high intensity. I wasn’t svelte by anyone’s standard, but I was more functional. I miss that. I know I’ll get back to it, that what I need to do is start showing up at the gym and getting back on the bike for ten minutes and building up my stamina. I’m not there yet though. Right now I’m still adjusting to being up and around after so many weeks in the hospital.
When I talk about my weight with Jay, he usually says, “Now there’s more of you to love.” Back when I first gained a lot of weight on high doses of prednisone, I used to shrug off what he said and focus on hating myself. I wanted my skinny, athlete’s body back. I saw my new softness as weakness and could only imagine that others felt the same way. That was years ago, before losing one hundred pounds and gaining most of it back. Maybe I started to realize it’s not my fault that I’m heavier. It’s not like I chose a horse dose of prednisone or to spend a cumulative total of years of my life in a hospital bed.

But my new attitude towards my body is more than tolerance. I’m starting to see the steel behind the fat. My body is a survivor. It’s endured countless procedures, the indignities of surgeries, the years of illness and treatments. A defibrillator bulges beneath a gash of scar on my chest. I used to find this ugly. Now I see the beauty and the strength of my body. It’s fought for me, endured for me, carried me for thirteen long years in Chronic Town.

I miss hiking and my skinnier jeans. But I refuse to engage in self-hatred to get back to them. I’ll lose some weight by returning to daily life. I’ll find my way back to the gym. But I’ll do it with love and dignity. I’ll do it in this body and with this body.

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The Other Side of the Bed

March 12, 2017 at 8:34 pm (Uncategorized)

I was back in the hospital two weeks ago, two floors up and one room over from where I’d just spent nearly three months as an inpatient. The walls of this new room were the same deliberately soothing green; the floors were identical faux wood. Even the view of the mountain looming behind the hospital was familiar. Nevertheless everything was different—and shockingly so. I was on the other side of the bed. For once I was not the patient. I was a caregiver.

Like so many life-changing events, this one started off innocuously. To be specific, it started with a small bruise. Andrew accidentally got kicked in the shin during one of his intramural basketball games. The three of us thought nothing of it. Six days later, though, Andrew started having problems walking. His leg swelled, became hot to the touch, and broke out in an angry rash. Jay took him to the walk-in orthopedic clinic. The doctor thought it was probably a bad bone bruise. “Follow the RICE protocol,” he told us. So we dutifully rested, iced, compressed, and elevated the leg. It swelled more overnight, and the rash got even angrier. He spiked a fever. The next day Jay brought him to our pediatrician’s office. I don’t do pediatrician offices anymore—not with my compromised immune system—and anyway I was tired. I was nearly asleep in an early afternoon nap when Jay called. “They’re admitting him,” he said. “They’re what?” I asked, trying to push back my drowsiness and understand what he was saying. “They’re putting him in the hospital.”

I don’t think I’ve ever left the house so quickly. I stumbled into my clothes, remembered to grab my purse, and drove down the hill to the hospital with my hands sweating so fiercely I could barely hang onto the steering wheel. I arrived to find Andrew looking so small in his hospital bed. He’s a big kid, but he was shrunken in on himself. His arms were swathed in warm blankets to try to pop up his lackluster veins for an IV. He wasn’t crying, but I could tell it was taking all of his control not to. “I hate needles,” were the first words he said to me, through trembling lips. Since his hands weren’t accessible, I went to the foot of the bed and hung onto his feet with what I hoped was a reassuring grip. “I’m so sorry,” is all I could think to say. I probably should’ve launched immediately into a pep talk about how everything would be OK, and that yes, it sucked to get an IV but he would manage. I found those words later. But in that moment I just felt so profoundly sorry that he was in that bed, filled with pain. I would have done anything to change places with him. It’s my role to be in hospital beds, not my 13 year old son’s. He’s supposed to be healthy and invincible. But there he was, a little lump on the institutional sheets.

While we waited for the nurses, Jay filled me in on what I had missed. Andrew had a severe case of cellulitis. Somehow—through some small fissure near the bruise though we’d never actually seen a skin break—bacteria had gotten into his lower leg. He needed IV antibiotics, but for how long, the doctor didn’t know. Before they could ascertain the scope of the infection, Andrew would have to get an MRI to make sure the infection hadn’t gotten into the bone. “It’s not fair,” Andrew whispered as Jay went through all of this. “I know. I know,” Jay and I both said. “It’s not fair, but you just have to hang in there.”

A trio of chirpy nurses hustled in. It was time to start the IV. Unfortunately, Andrew inherited my veins. They circled around him, assessing his arms like cuts of meat. “How about here?” one asked, poking at the top of his hand. “Nope,” said another. “I like this one.” They brought in fresh warm blankets. They gently slapped his hands and arms to get the veins to “pop.” They pinched and prodded. It was all to no avail. Andrew’s veins just suck. “OK, we’re going to go for it,” the head nurse told him. Their first attempt was on the top of his right hand. The needle went in; they finagled the IV into place. Blood bubbled up and out. But it was no good. They tried again, this time behind his left elbow. Nope. How about on top of his right hand? No, not there either.

Andrew was stoic through all of this. He traded quips with the nurses, didn’t shed a tear, and even stopped flinching when yet another needle went into him. However, I found the whole ordeal impossible. I’m no stranger to the drama of IVs. The last time I was in the hospital, I “blew” three IVs in an hour. They eventually had to install a picc line (a kind of semi-permanent IV) because of all the problems they were having with me. I didn’t flinch or cry either—when it came to my arms and hands being stabbed with needles. But watching Andrew endure this was unbearable. How can you stand watching someone you love being hurt? I stopped the nurses before they went for Attempt Number Four. “What will be different this time?” I asked, with more hostility than I anticipated. They decided to wait for the MRI nurse to install the IV. “She’s a pro,” they said. I clenched my jaw and held onto Andrew’s foot. “I’m so sorry,” I told him when we were alone. “It’s not your fault, Mom,” he said. I knew that. I was just so damn sorry for him.

The indignities kept coming. The MRI nurse was able to get an IV started (on the first attempt), but Andrew still had to get through the MRI itself. I’ve had literally dozens of these diagnostic tests. It got to the point that I trained myself to be able to think of all the rhythmic clanking and clunking as soothing and was able to fall asleep in “the tube.” But I worried about Andrew. He seemed so small, and the whole medical industrial complex into which he’d fallen so massive. Of course he made it through the MRI, just like he’d make it through the 5 AM blood draws, and being awakened every four hours all night long. When he blew his IV, he made it through getting a picc line placed, even though—unlike me and most patients—he went through the whole process stone cold sober. He also endured bad news. The local radiologist thought Andrew’s bone was infected, so the doctors braced him for a long hospital stay and then weeks of antibiotics. I gnawed my fingernails down to the quick and worried.

Being on the other side of the bed in the hospital was all about managing worry. It’s an entirely different kind of worry than I experienced as a patient. Of course I worried about myself when I was in the hospital bed. I was in blinding pain and nothing the doctors did seemed to help me. And of course I saw the worry that my loved ones felt for me, and I felt bad for inflicting this on them. But it was an entirely different matter to feel the whipsaw force of worry for Andrew. I lay awake in the hospital at 2 AM, stretched out on the pullout “bed” the hospital provided. My sister and my mother slept for weeks next to me in the hospital. I knew it was bad—the “bed” was beyond uncomfortable, the IV pump always took up beeping and blaring in the middle of the night, and the nurses and phlebotomists sauntered in whenever they felt like it, invariably flipping on the harsh fluorescent lights. But I never knew how paralyzing and enervating and all-encompassing the worry could be. I stared out into the not-quite-darkness of the hospital room and tuned my worry like a violin string. How could this be happening? How could this be happening to Andrew?

As quickly as we were pitched into our medical drama, we were pulled out. Our local doctors sent the MRI report to a pediatric infectious disease specialist in Seattle who determined that Andrew’s leg bone was not infected. Since he responded so well to the three days of IV antibiotics, they let him out barely 72 hours after they’d put him in, on a hefty dose of oral antibiotics. I was relieved when we got this good news, but I couldn’t just shut off my worry.

“How did it feel to be in the hospital and not the patient?” Jay asked me the other day. Horrible, terrible, painful, helpless. But I couldn’t access descriptive adjectives. All I could say was, “bad.” Language shrinks in the face of turmoil. For the most part, life is back to normal. Andrew returned to school, and we’ve returned to nagging him to make up all the work he missed. He’s even been back to the gym to play some more basketball. But I feel changed by what he went through. I now have a small sense of what life is like for Jay and Andrew, my parents, my sister, my brothers, my friends for the past 13 years in Chronic Town. To watch someone you love endure pain transcends language. But it is the essence of love—to worry, to watch, to stand by.

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Birthday Candles

February 17, 2017 at 5:58 pm (Uncategorized)

My son turned thirteen on New Year’s Eve. He’d been talking about his birthday for months.  On the big day, not only would he qualify under family rules to sign up for Instagram, but he would finally be a teenager.  He wanted to eat his favorite special meal of homemade nachos piled onto grilled bacon cheeseburgers, which he named “Nacho-average-burger,” (as in “not your average burger).  As in past years, he wanted to stay up as late as he could keep his eyes open.  Maybe he’d have a few friends over, or maybe he’d just binge on playing NBA 2K with his Dad on his Playstation.  We might go to the pool, or a movie.  Whatever happened, it was going to be a great day.

But then I got stuck in the hospital. On his birthday.  His thirteenth birthday.  I was devastated—or as devastated as one can be when you’re getting pumped full of chemo and pain medication.  What were we going to do?  It’s not as though I could ask Andrew to spend his birthday with me in my hospital room, with the blinds closed tight on the window so the light wouldn’t aggravate my headache and vertigo.  I resigned myself to spending the day—his day—on my own.

But the problem was that Andrew’s day was also my day.  I had carried him for nine months, felt him squirming and restless within me.  Thirteen years ago I had labored for 26 hours to bring him into the world.   His birthday felt inextricably bound up with me.

It didn’t help that it felt like he was slipping away from me. Gone were the days of past hospitalization, back when he was a toddler and a young child, who would run into my hospital bed and snuggle so close if felt like we were merging.  Now he came along dutifully for the dinners Jay organized every day for the months I was an inpatient.  Andrew was polite, even kind sometimes.  But distance grows when you’re not bumping elbows in daily life.  The easiness between us felt taut and frayed.

And now I was going to miss his birthday. I berated myself for being a chronically ill mother.  If I could just get out of the damn hospital bed and return home, even for only a day…  But I couldn’t.  Like it or not, I was sick.

Mothers have a way of knowing when you’re in pain. Even through my fog of medication, I could feel the dull throb of it from my son.  And my own mother, who’d been by my side in the hospital for weeks, must have felt my sorrow rising off me in a damp, teary fug.  She came to my rescue—to hell with the seemingly iron-clad boundary between sickness and celebration, between the hospital and family, we would make a birthday where we were, in the sterile hospital room.   She ran out on a bitterly cold day and bought balloons and thirteen presents for Andrew’s thirteenth birthday.  She coordinated with Jay.  They agreed that Andrew would have the day at home with his Dad, but in the evening he’d come to the hospital.  Jay would bring the cake and candles, but we would provide the venue.  She decorated the room, wrapped the presents, and perked me up.  We checked with one of the kind nurses and got permission to light candles despite all the supplemental oxygen on the ward.

When Andrew walked into the room, I could feel his edginess. He expected something routine or perfunctory, perhaps a slice of cake, the usual quite murmuring that characterized our dinner.  He was certainly not prepared for his grandmother and his mother to welcome him into the room with the rallying cry of “Happy Birthday.”  His eyes took in the balloons and came to rest on the mound of presents.  “Wow,” he said, with a distinct glimmer in his eyes.  Jay was softer too, less constrained by having to be the person in charge all the time.

We had a real birthday party in Room 2112 at St. Peter’s Hospital. Champagne isn’t appropriate for thirteen year olds or mothers on pain medication, but my mother had two bottles of sparkling cider for us.  We toasted the birthday boy—rather, birthday young man.  For me everything felt loosened—the fear and loneliness I’d been carrying for weeks, the distance between Andrew and me.

We turned off the lights to let the birthday candles shine in the winter night on the cusp of a New Year. Who knows what Andrew wished for when he blew out his thirteen candles?  All I know is that he was smiling.  In the candlelight he looked both older and younger, part child, part man.  I felt the past turn within me, and caught a fleeting glimpse of the future.  He must have felt my eyes on him, because he looked up and held my gaze for a few seconds.  Then he smiled, and turned his attention to slicing the cake.

It wasn’t ideal by any stretch of the imagination. It was a party in a hospital room.  When it was over, my husband and son left, and my parents soon after.  I stayed, with the nurses and the I.V. dripping into me.  Still, it was a party in a hospital room.  That’s quite a feat.  I will always be grateful to my mother for making it happen.  For the time they were there, we were together.  I got my birthday wish for Andrew and myself.  We were together.

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February 17, 2017 at 5:55 pm (Uncategorized)

I know I’ve been gone for well over a year. I thought a lot about blogging, but life in Chronic Town kept getting in the way.  To mark my return, I was going to write a long, apologetic explanation about why I’ve been absent.  Then I remembered that I’ve done that before (post link to past entries), and the gist of what I said before still holds true.  I’ve been sick, really sick, for long stretches of time.  In fact, I’ve spent roughly six months of the past year—that’s half of my life over the last 12 months—as an inpatient in the local hospital.  Two weeks ago, I was able to come home after 79 days in the hospital. But being chronically ill isn’t the full story of my life.  When I bounced back to health, I was able to paddle the Willamette River, wander around Portland, spend a few weeks being blown away by the beauty of Scotland, and make it to my son’s basketball games.  That’s life in Chronic Town.  There’s no denying that the lows are very low, but there’s also a lot of joy.  I’m glad to be back.

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October 27, 2015 at 11:50 am (Uncategorized)

Andrew is terrified of needles. He’s due for an immunization in a few weeks, and he has spent the last couple of months complaining, whining, and begging not to get the shots. Even worse than immunizations is when he has to have blood drawn. The last time this happened he nearly passed out at the lab. He was so shaky and nauseas that the nice phlebotomists fed him shortbread cookies and apple juice. Once home, he spent the rest of the day claiming he’d lost too much blood to do anything but sit on the couch (they drew two small vials) and got woozy anytime anyone mentioned a needle.

I find it ironic that my one and only offspring is needle phobic since I am the queen of needles these days. I get stabbed in the chest every time I have to go get chemo. Well, that’s maybe a little bit of a dramatic way to put it. But when I started chemo six years ago and it quickly became clear I was going to be having regular infusions for the long hall, the White Coats had a port installed in my chest. A port is medical appliance surgically installed directly beneath the skin, and a catheter connects the port to a vein. The port makes it much take in large amounts of fluids over a long time, and also helps avoid at least most of the sting some of the drugs can cause when infused through the smaller veins in the arm. To “access” my port, a nurse literally jams a sizable needle directly into my chest. It doesn’t actually hurt that much (I always turn down the offer of an initial numbing shot – why get two shots when one will do?). Still, it takes some discipline to sit still and not cringe when the nurse is coming at me with what looks like a spike.

I’ve gotten accustomed to even bigger needles since I’ve been on Acthar. Jay helps me draw up 80 units of the golden gel into a syringe, and then twists on a ½ inch needle. He always looks away when I pinch up a hefty amount of my leg muscle, take a deep breath, and then plunge the needle in as far as it will go. This is called an intramuscular (IM) injection because it passes deep into muscle tissue. It hurts like hell. Often, I have a reaction to the injection, and my leg swells. Always, I bruise badly. But, still, I try to be stoic. I do my best not to complain (well, not too much), and when the time comes for an injection I aim to do it without hesitation or too much worrying. Andrew, on the other hand, claims he will “puke everywhere” if he were to watch one of my Acthar injections.

Although I like to tease Andrew about his fear of needles, I am actually relieved that he doesn’t seem to feel the need to mimic my attitude. Andrew is already too stoic about most things related to my medical situation. When I disappear out of his life for one of my mega-long hospital stays without any warning, Andrew doesn’t fall apart. In fact, I wish he would complain more and rail against me. Instead he is quiet, contained and all-too accepting of my time in the hospital.

Andrew’s been living with my illness for his whole life. He was just 3 months old when I was diagnosed with sarcoidosis. His growth milestones have occurred against the backdrop of my disease becoming more severe and taking over more of my life. Just this past August, Andrew started middle school only three days after I was released from a 33-day stint in the hospital. He didn’t blame me for making his life chaotic at such an important milestone. When I expressed my worry over this, he told me, “It’s OK, Mom. I’ll be just fine.” And he was. He went through the transition brilliantly.

Maybe I’m being too symbolic, but it feels to me that Andrew’s demonstrative stance against needles is his way of drawing some boundaries between himself and my disease. When he was five, he could recite my entire medication list, including the complicated names of my chemotherapies. By turning his back—literally and metaphorically—on the many needle jabs that happen around our house, it feels like he is saying, “Enough.” And I like it.

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Rubber Bands

October 3, 2015 at 5:10 pm (Uncategorized) (, , , , )

I am finally coming back to life. It’s been not quite six weeks since my 33-day stint in the hospital, but it’s really only in the last few days that I feel myself picking up the fight again—the fight against the disease determining who I am, the fight against the god-awful tiredness and pain I feel every day, the fight against the part of myself that just wants to crawl into bed and never get up.

I used to bounce back more quickly after heath catastrophes. Or, at least it feels that way. Back in 2013 I was in the hospital for a grand total of 40 something days. They were 40 something terrible days of pain, vertigo, periods of blindness, and fear. But I picked myself up and shook the dirt off within a few days of getting home.

This last hospitalization was different. It’s not that I felt more pain or worse symptoms. But by the end I felt totally broken down. I could not stop crying when I got home. I cried if someone said something nice to me. I cried when my pain escalated. I cried when I thought of how much hurt my hospitalization had caused Andrew. I cried when I saw how exhausted Jay looked. Typically I’m not a weeper. But night after night I curled up on Jay and bawled my eyes out until his chest was sodden and I could not get enough air between my sobs.

It wasn’t just the crying that concerned me. After being flat on my back for 33 days, I lost a lot of physical strength and resiliency. I needed to sleep for 16, 17, or 18 hours a day. I woke to shuffle around the house a little, and then fell back into dreamless sleep that did not sate my fatigue. I’m ashamed to admit that I liked being in bed. I really didn’t want to get up. I was so out of shape that doing a simple task around the house like unloading the dishwasher wore me out. Plus getting out of bed and trying to do fold a load of laundry caused the pain in my head to escalate. It felt better and safer to curl up in bed listening to Scandinavian mysteries on my ipod.

The hardest part of getting up was running into Jay and Andrew and feeling horribly guilty at the impact my hospitalization had on them. Intellectually I knew that it wasn’t my fault any of this had happened. But emotionally I was raw with guilt. After absenting oneself from a family for a month, it takes patience and effort to muscle your way back into place. It took a few days after my return for Andrew to make eye contact with me. And Jay had to stay in constant motion to do everything around the house after working a full day. He looked brutalized by exhaustion. It was easier some days just to stay in bed instead of facing the damage I had caused.

What I’m describing is emotional and physical brittleness. It’s an aspect of chronic illness that’s hard for “outsiders”—all you healthy folks— to understand. I am fundamentally a different person than I was before I was diagnosed with sarcoidosis nearly 12 years ago. Each year of health crises, medical procedures, news of the disease traveling to a new organ, threats that I might die, rounds of chemotherapy, all wear me down a little more. Picture a new rubber band. Now imagine snapping that rubber band over and over. For a while the band will keep its shape—its innate resiliency. But eventually, the rubber band will start to stretch and sag. Keep up all that snapping and you run the risk the band will fray and break. I am that rubber band.

It’s easy to berate myself for being weak. If I was made of stronger stuff, each snap to my emotional and physical self wouldn’t break me down. There’s a lovely man who posts regularly to the Facebook support group for neurosarcoidosis I belong to. He looks to be in poor health. He posted photos of himself in the hospital, some from physical therapy where he was hooked up to oxygen on a treadmill. No matter how dire the image, he writes a version of the same thing: “You got this. Keep fighting.” It’s that kind of spirit I fear I’ve lost.

But I’ve begun to wonder if perhaps all this isn’t so starkly binary, strength or weakness, health or sickness. Living with a chronic illness means you are pitched out of a world of blacks and whites and into a vast land of grey. Maybe I didn’t feel strong during the two months since I got out of the hospital and maybe I opted out of some challenges on a daily basis. But when I look at what I’ve been doing more often than not, I feel some hope for myself. Even though it’s been incredibly hard–and at times feels impossible–I’ve been rebuilding. I’ve started going for walks to regain some of my lost physical strength and stamina. I had a heart-to-heart conversation with Andrew about my hospitalization and listened without crying while he told me how hard the month was when I was gone. I’ve begun to go back to work, picking up my never-ending book project. I’ve started cooking dinner again—not every night, but when I can—and showing up for Andrew’s soccer games. Maybe I too “got this.” So all you folks in Chronic Town—and all those in the “normal,” healthy world—keep fighting.

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