The elephant grew and grew until it didn’t fit in the room anymore

Picture of seated elephant taking up the bulk of the roomI’ve had an elephant named Leukemia accompanying me to every large social gathering for the past 6 years or so. I am inevitably preoccupied with who knows Leukemia, who doesn’t know, and when I’ll be asked a question that forces me to disclose Leukemia’s presence.

Over the past few months, Leukemia has been consumed by his bigger, more imposing cousin, Dying. Dying is clingier than Leukemia; wherever I go, he’s always by my side. It’s not a secret that Dying is there–you, my readers, are well aware–but not everyone I encounter knows. So when I arrive at a get together with unfamiliar people or those I haven’t seen for years, I’m on high alert. Who will ask the first question that will force me to introduce my imaginary friend?

Last Friday, we were invited to a lovely celebration for a friend who had been recently granted Canadian citizenship. We wouldn’t have missed it. I tried to leave Dying at home–this was our friend’s special night–but the elephant is clingy.

What I failed to consider was how emotional I’d find being at this gathering with Dying by my side. I’d be seeing a number of people I hadn’t seen in some time, only some of whom would know about Dying.

Soon after the initial greetings and congratulations, I became teary, which surprised me. I realized that I would not see many of the guests again after that night. Then came the awkward questions from the ones who did know Dying. “Are you still fostering dogs/doing yoga/working?” Some who knew about Dying avoided me altogether. I get that; who wants to talk about Dying at a party? Still, if you can see the elephant, I’d be grateful if you’d acknowledge him. It’s not like Dying is great company for me either.

Then my guardian angel appeared: the sister of the host, who, despite her rushing around laying out food, visited with J. and me briefly when we arrived. She greeted us with a big hug, and, in the process of offering us drinks, acknowledged what I was going through and expressed her sadness for us both. Her kindness couldn’t have been better timed, and more needed, in that moment. We were away from the group so my unbridled tears did not destroy the evening for everyone. She gave me a chance to be sad, which I’d been trying unsuccessfully to contain, and she shared her sadness too.

A while back, a palliative home care nurse told us how dying people’s worlds shrink as they become increasingly ill. She was right. I leave the house less, and, other than medical appointments, my calendar is sparse at best. No more yoga classes or PALS outings, rare social engagements, and lots more time at home sleeping. Social outings with unfamiliar people are simply too stressful now that Dying insists on joining me everywhere I go.

Congratulations to my dear friend and may he enjoy many happy years as a Canadian. J. and I were grateful to be included in his celebration. I do wish that Dying hadn’t insisted on crashing the party. Trust me, I’d turf him if I could.

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Never say never again

Freshly baked rugelach, a Jewish rolled pastry

Monday was a tough day. I called to enrol an interested friend in the upcoming Jewish cooking class, only to learn the class had been cancelled for lack of enrolment. Then I was chastised for not signing my friend up earlier. Are there not 16 Jewish-food-obsessed people in this whole town? This class was important to me, not only because it was a Jewish theme, but because I’d set it as a goal to work, or shall I say “live”, toward.

I had been hesitant to enrol because I thought I’d be dead by that date. J. encouraged me to take the risk so I did. No wonder I was heartbroken when I received news of the cancellation. The bearer of bad news encouraged me to maintain my credit at the school rather than receiving a refund so I could take another class in the future. I insisted that a refund would be preferable, but appropriately withheld my rationale. You would have been proud of me.

As I moped around the house over the following few days, my much better half–perhaps we should call her Jane Bond today?–started scheming. Guided by one of her favourite mantras–it never hurts to ask nicely–she took action. Unbeknownst to me, she called the cooking school and asked whether they would reinstate the class if she could muster up sufficient enrolment. Then she emailed a number of our foodiest friends to let them know how important this class was to me, and asked if they’d consider signing up. The response was overwhelming. Within 5 minutes she had 7 definites. By day’s end, she had 19 takers for 16 spots. Sorry to those who were too late to make the cut but you gotta be quick with my girl.

Late yesterday afternoon, J. told me what she’d been up to. I’d noticed that her phone had been pinging off the hook with texts, and she seemed in especially good humour as the day progressed. A more astute person than me would have sensed that something was up.

In the late afternoon, J. let me in on the secret. She told me that friends had responded immediately and excitedly and that already she had enough people to hold the class. For the rest of the day, she kept me in the loop as the class filled with our friends. My tears took a sharp turn from sad to happy.

Kudos to J. for making this happen. When an obstacle arises, I lay down and die (pun intended) while she rises to the challenge. As the class enrolment shows, J. can be very persuasive.

And kudos to our incredible community of support, who jump whenever called into action. J. shared how important this cooking class was to me, and to us, and our friends wanted to make that happen. What a precious gift.

I am so grateful and excited, and not just because I can almost taste the knishes and rugelach we’ll be making. Sure, gravlax is Swedish–I imagine our teacher is not Jewish–but it’s a close enough facsimile to lox. The night should be a spectacular. I hope that everyone who attends will enjoy both the food and the memories we create together.

 

 

Can you use “palliative” and “hypochondriac” in the same sentence?

Men's t-shirt reads: "recovering hypochondriac"

It’s long been established that I am the boy who cries wolf, except for the “boy” part. A visit to the dentist yesterday revealed that I am not going to die of an abscessed tooth. My low platelets simply stooped to a new low, resulting in bleeding in the tooth. No sign of infection. I am absolutely fine, and I have already embraced my mauve-tinged tooth. The dentist was fascinated by the unusual phenomenon and sent a picture to all his dentist friends. Then he nicely told me to leave so he could get on with his real patients, who pay him for teeth cleanings, cavity fillings, and other procedures forbidden to me.

Was I overreacting on the weekend? No, I don’t think so, but I always question whether a symptom warrants a call to the doctor, even now that I am palliative. I hate to bug doctors unless I’m really sick. But as a dying person, how do I define “really sick”? When a new symptom arises, I’ve always been a wait-and-see kind of gal, for fear of anyone viewing me as a hypochondriac. I’d like to give up that label once and for all–I am dying here–but I’ve always tried so hard not to cry wolf that sometimes I’ve swung too far in the laissez-faire direction.

In recent weeks, I am overwhelmed with new symptoms, some minor discomforts, but others causing disabling pain. My legs have been swelling lately, and I’m overwhelmed with intense muscle cramping that hits me at the same time each day. My neck is still swollen, and although the doctor may not be concerned, it may be aggravating a nighttime cough. Dying people need their sleep, and I’m not getting much. And I’m losing weight even though I’m making a deliberate effort to eat, appetite or not. Are any of these symptoms worthy of concern?

Maybe these bodily changes are par for the course of a dying person, yet I’m not sure I want to know. They could also be side effects of the new medications I’m on to manage other symptoms. Wouldn’t that be ironic? Take a drug to fix one problem, and create another one–or two, or three–in its stead.

I could always ask the doctor whether these changes are signs that I am dying, but do I really want to know? No, I don’t. I want to eliminate the symptoms so I can get on with living, rather than fret about my body’s decline. If you were in my shoes, would you ask for clarification? Would you want to know the answer? If so, you’re a braver person than I am.

Nonetheless, I’ve decided that in my dying weeks, or months, or whatever time I have left, I’m going to practice informing the doctor of symptoms I might have without apologizing for wasting his time. Oh, and my days of enduring pain without painkillers are over. I took two Tylenol yesterday! I’m going to go a little easier on myself if my symptom is benign, and the word “hypochondriac” will never again pass these lips. I may drive the doctor crazy, but so be it. He’ll get over it.

Field trips are not about place, but about time and memories

Hand holding chocolate-vanilla swirl ice cream cone

I’ve been relentless lately. Because my time on this earth is limited, I’ve been demanding J. take me on daily outings. These field trips are as much about getting me out of the house as they are opportunities to reminisce.

Earlier this week, we went to see the pandas at the zoo, and topped that off with a chocolate-vanilla swirl ice-cream cone. It was toss up between the animals and the ice cream. We’ve seen pandas before, and they were just as charming. And that ice cream cone? It tasted identical to the cones from the ice-cream truck that waited outside our school in the spring for eager child consumers like me.

The next day, we couldn’t quite make it to Israel so we did the next best thing: we went to lunch at a great middle eastern restaurant and ordered their falafel plate. We both agreed that the food didn’t compare to the Israeli fare we’d eaten, but it still sparked memories from our trip, which was only six months ago. I was going to live forever back then. A lot has changed in six months.

Then came Friday evening, the beginning of the May long weekend. I dragged J. out for a small hot-fudge sundae, which I will always associate with my running days. Soon after I moved to Calgary, my running mates topped off their long runs with a trip to the Dairy Queen. (Faulty logic, now that I think of it.) I’ve never looked back.

While we were eating, the sun glinted off my pearly whites, one of which J. noticed was not so pearly or white. This tooth had been sensitive on and off but I hadn’t considered a more serious problem. No time for reminiscing; I went into full panic.

By morning, the discolouration had worsened, so I did what any self-respecting dying person would do: I took measures to ensure I would not die of a tooth abscess. I called the hospital, spoke to the hematologist on call, and begged for antibiotics to tide me over the weekend. The kind doctor was very obliging. After a quick visit to the cancer centre (it would have been quicker had she not deemed me in need of platelets), I returned home and left a desperate message for my dentist.

I could tell you this experience had me reminiscing about my last root canal, which was botched so badly I ended up in the hospital under 24-hour watch. Thanks to me, the dentist landed an unprofessional conduct charge. Not my fondest memory. Next.

I will have to deal with this tooth pronto, but then I hope I can get right back to having fun. In a few weeks, we’ll be heading to London (or its closest facsimile, a local historical park), for high tea with scones and mini sandwiches. I’m also dying for dim sum. How better to recall long-ago outings in Toronto’s Chinatown? I can almost taste that warm sticky rice wrapped in a lotus leaf.

Funny how each of these memories has a food focus. (Sorry pandas, you were secondary to the ice cream.) That’s me in a nutshell, always planning my next indulgence. Hey, when’s the last time you shelled a nut? Every Passover when I was growing up….

Finally, a reason to believe in a Higher Power

I’ve had a fraught relationship with God for many years now. I want to believe in The Guy (or Gal) but it’s hard not to want to blame Him for my predicament. My polycythemia, a disease of older Jewish men, was diagnosed at 36. At age 54, I’ve had this life-threatening illness hanging over me for a third of my adult life.

Twelve years later leukemia revealed itself, followed by my near-death experience. The second diagnosis compounded my health anxiety, especially when my then-hematologist told me that the effective medications for my type of leukemia would fail because of my preexisting polycythemia. I ditched him immediately so I wouldn’t die prematurely of anxiety.

I never wanted to believe that any God I know would want to put me through a long, torturous trial like this. Sure, I could chalk it up to bad luck, but couldn’t He have chosen someone with the emotional resources to handle such challenges? I am not that person.

As I near death, I’m trying to open my mind to God. I’ve been meeting with the rabbi, although we haven’t talked about the Big Guy much, if at all. I do take comfort from the rabbi, who clearly has a better connection to the heavens than I do. He’s got to believe in The Guy or he wouldn’t have chosen this profession that suits him so well. He’s proven himself kind and compassionate and he’s supporting me gently through my impending death.

Maybe I’m a stereotype, the kind of person who seeks God as her days are numbered. I wouldn’t put it past me, opportunist that I am.

But over the past few weeks, He’s finally given me a sign that He’s watching and He cares. I’m talking about the annual hockey pool. Every year, J. selects a team for me and a different team for herself. I would have no idea who to choose, so I leave it up to her. Through the playoffs, we skip the hockey, but check our pool standings diligently every morning.

In past years, my players have started out near the top of the standings, but by the end I’m close to the bottom. And every year, for as long as I’ve been participating, one woman wins the pool by a long shot. She must pay for insider information.

The playoffs are three rounds in and not only am I still standing, I’m leading Ms. Insider by 6 points. Barring an unforeseen disaster, I am on track to win the pool this year. Not only that, I’ve left J. in the dust: she is currently 48 points behind me.

You do see the irony here, don’t you? I say I’m beating J., when in fact she’s the one who chose both her team and mine. Had she decided to switch our teams between us, she would be the one eliminating my chances and testing Ms. Insider’s invincibility. Too late for that, honey. It’s Annie for the win.

Although He may have beaten me down for many years now, I am grateful that in this, my final months, God has seen fit to allow me a victory, however unearned. I’ve finally found my compassionate God. Thank heavens for small mercies.

Picture of ice with four hockey players, inlaid "Stanley Cup Playoffs"

 

A moratorium on my role as a teaching case

Monkey wielding large needle says: "Relax, I've practiced on hundreds of grapefruits."

True confession: J. and I were both a little freaked out by the neck swelling. It was an odd, new symptom. I’m brimming with odd, new symptoms these days and often I can’t help but worry about what the changes might mean.

But after the nurse’s telephone reassurance that I would live to see another day, I thought my anxiety had dissipated. That’s until I tried to sleep and, unexpectedly, stared at the ceiling for hours whilst concurrently coughing up a lung. “Maybe I have a simple chest cold, ” I tried to tell myself while counting a lot of sheep.

By the time we saw Dr. Blood Lite yesterday, other than looking like a no-neck gym rat, and losing that lung, I felt fine. The doctor’s physical exam revealed nothing of concern; an unhappy lymph node is small potatoes to a hematologist. He wondered if I had a throat infection, and my nodes wanted in on the party, so he started me on antibiotics.

Just to be sure, though, he sent me for a neck CT scan. And guess who got the newbie? I’m not sure Ms. First Day on the Job had ever inserted an IV before, but the contrast dye required one. So I told Ms. FDOTJ what I’ve been telling any medical professional who wields a needle in my vicinity of late: I HAVE NO PLATELETS AND I BRUISE MORE EASILY THAN AN OVERRIPE OKANAGAN PEACH, SO DON’T EVEN THINK OF USING ME AS A PINCUSHION.

This young lass must have been so nervous that she did not hear (or understand?) a word I had said. She poked once, searched around a little. First mistake? If at first you don’t succeed, don’t try, try, try again on peachy me. Strike 1. Enter her supervisor, who orally guided her through a second stab. Strike 2.

I was gauzed and taped but no one placed pressure on the wounds. I didn’t have a hand free, and neither professional stepped in. News flash: no pressure post poke results in greater bruising. Needless to say, today my arm looks like a toddler took a black marker to it.

Then the supervisor said, “How about our trying the other arm?” How should I have responded at that point? I knew the procedure needed to be done, yet all I could see was a strikeout. I could have said “Over my almost-dead body!” but I stayed silent, for fear I might share my deepest (read: most hostile) feelings.

After 18 years as a teaching case, I’m dying, and I’m done with students. No more palpating my ginormous spleen, no more missed veins, no more virgin hands on this body. Students need to learn–I know because I was one once–but they’ll have to find another subject to hone their skills on.

I’m still kicking myself for not speaking up. Sure, I’m angry with how I was mishandled, but I’m angrier at myself for staying silent. Since when do I not assert myself? No one else is going to do it for me.

Please learn from my mistakes. Speak up and see what happens. Despite what your psychic may suggest, no one can read your mind.

Even when things are going well, thoughts of dying sneak in.

Picture of new Calgary Central Library

So many wonderful initiatives are happening on my behalf, I don’t know where to start. Supercousin has already confirmed 24 family and friends in Toronto, and many more who wished they could donate but are unable, for the June 16 Toronto blood donor clinic in my honour.

Now Superfriend in Calgary has stepped in to arrange for a donor clinic here on the same day. She has already confirmed 10 people, many of whom I don’t even know, to fill the 15 chairs she’s holding. Contact me if you’re in Calgary and you have it in you to give; I’ll connect you with Superfriend. I’m sure we can fill those chairs. Those who can’t donate for whatever reason have offered moral and culinary support.

As if that’s not enough, over the past few months, my Superkin have been arranging another special honour. You know what a library nerd I am, how I worked in libraries for years and how I still love to hang out in the stacks. Every so often I even reshelve a book that’s out of place, for old time’s sake.

On November 1, 2018, Calgary will be opening its architecturally stunning new downtown library. As a fundraiser, people can buy windows for inscription. So my Superkin arranged to buy me a window, which will be inscribed for the next 25 years with my name and a few descriptive words of J.’s choosing.

But Superkins’ donations were so generous that they quickly purchased one window, and, with the overflow, decided to purchase a second window for J. Truly, she deserves a window more than me,. She’s been by my side through years of illness, caring for me without complaint, patiently adjusting to my slowing pace, and never abandoning ship. I was overjoyed to come up with her inscription, which not surprisingly ends with, “Never an overdue fine.”

I am trying to see only the joy in all of this, but there is something hanging over me: I’m going to die, and it may happen before any of these events transpire. It didn’t help that I woke up with a visible lump on my neck this morning, perhaps a lymph node saying hello. My mind immediately went to dying, as it tends to do. J. called the cancer centre and the nurse told us to hang loose until we see Dr. Blood Lite tomorrow. No need to contact the funeral home after all.

Since I’ve learned that I am palliative, I’ve tried to keep living my life, planning for events down the road as if I would be there to participate. No one has given me an exact end date, and even if I knew the date, wouldn’t I want to keep living until I die?

There’s a Jewish cooking class being offered at the end of May, and I signed up, after some hesitation. How often do you think Jewish cooking classes are offered in Calgary? Never. Signing up for the class gave me a goal. Then there’s the blood donor clinic in mid-June, and the library opening in mid-November.

Hey, do you think they’d let us don hard hats so we could view our library windows before the official opening? I might just have to inquire.

 

Desperately seeking eulogy, or maybe not

Woman in jeans holding crotch to stop self from peeing

Remember how the rabbi tasked with writing my own eulogy? He wasn’t expecting me to deliver it at my funeral–that would pose one obvious logistical problem–but thought my input could guide him. Some have suggested he was trying to get me to do his work for him but I disagree. He was simply exercising his due diligence. How better to get to know me than by soliciting my input on the eulogy?

I like this rabbi’s philosophy. He prefers to deliver the eulogy because, by so doing, he is allowing those attending the funeral to focus on mourning. If I didn’t like him or trust him so much, I might have trouble with his assuming this task, but I think he’s the perfect man for the job.

That being said, I’m sure many of you are dying to eulogize me. I’m sure you all have a funny story or ten that I’ve neglected to share in my blog, where I’ve been incredibly difficult or my outside voice has said something outrageously inappropriate. Everyone has an Annie story.

Also, I don’t want to be idealized after my death as so many are; I want you to retain a balanced picture of me for eternity. I’m sure your words would highlight many areas where the rabbi would appropriately fear to tread.

I was texting with a dear longtime friend the other day who kindly reminded me of an incident soon after we’d met. I had invited a few friends to my home for a social evening. (Once upon a time, I socialized.) I recall hours of raucous frivolity. I laughed so hard that, late in the evening, I ended up wetting my pants.

Remember I recently disclosed that I bleed a little when I cry? Well, it turns out, on very rare occasions, I also pee a little when I laugh. My dear friend has never let me forget this incident, and with good reason. He is the elephant who never forgets.

As we were texting about this special memory, I mistyped, “I understand your vivid recollection of the pee incident. That’s why I’m now asking you to do my eulogy.” But I meant to write “not” instead of “now”. My friend received this text while he was in a work meeting, which elicited tears and a barrage of texts about how we’d have to meet to discuss what he’d say, and whether he’d even be able to speak without weeping.

After several perplexing exchanges–I didn’t ask the elephant to do my eulogy, did I?–I reviewed my texts and realized my grave error. My correction was swift and firm. No, dear friend, you willl never be tasked with my eulogy because your impulse control is poorer than mine (if that is indeed possible)! Plus, I’ve herein already shared your favourite memory, the pee story.

For the rest of you lining up to speak on my behalf, thank you for your interest but the position has been filled. No hard feelings. I’d prefer we stick with someone who does not know me well enough to humiliate me completely in front of a crowd. As you well know, I am perfectly competent of doing that myself.

 

The mystery of the angels in my midst

Patti Labelle quote: You don't have to be an angel, you just have to be someone who can give

When I think of angels, I often think of the heavenly ones with gauzy wings and glowing halos. Kind of like Tinkerbell. Recently, however, I have come to realize that there are many angels here on earth. Don’t worry, I’m not getting all religious on you; I’m making an observation based on personal experience.

Angels have been jumping out of the woodwork recently. There are the long lost friends who have heard I am dying and are reaching out with loving letters of comfort and support.They have shared happy memories of our time together and reminded me of what our relationship has meant to them. Others who live closer by are sharing similar sentiments with me face to face. It’s uplifting to learn I am loved before I die.

I can’t imagine it is easy to communicate these feelings, whether in person or in writing, but these friends are pushing through the discomfort to share frankly and honestly. Knowing that I have had a positive impact on their lives, or that I have brought them joy, or provided support when they’ve needed it–these acknowledgements make me feel my life has had value.

Then there are the doers. The deliverers of lasagna and grapefruit and other various and sundry delicacies, the visitors who drop in at the cancer centre on short notice to pass the time of a transfusion, and the dog lovers who ensure Jelly is cared for if we are waylaid or slip out of town for the day. Their importance cannot be understated.

But there is one particular angel, hereafter named Supercousin, who takes the chocolate cake this week. Supercousin has arranged a Canadian Blood Services clinic in my honour in Toronto on Saturday, June 16. She has initiated this clinic  because she, like many others, feels helpless from afar and wants to do something tangible to show that she cares. She has announced the clinic to close friends and family, and the response has been swift and magnificent. Already 20 donors have stepped up, plus several others who unfortunately are ineligible to donate at this time. Through this venture, Supercousin is raising awareness of the critical need for blood donations. I know I am using more than my fair share of blood products of late, so any efforts to replenish the stocks I deplete can only help others.

If you happen to live in Toronto and would like to donate at this clinic, let me know and I will connect you with my awe-inspiring Supercousin. (To reach me, you can comment on the blog, text, or email me.) If you do not live in Toronto, but would still like to donate, let me know. Maybe a group of us can crash the Calgary clinic (or wherever else you live) while the scheduled Toronto clinic is underway. We may not be able to add to the official Toronto-clinic tally, but I have a feeling the overflow of blood products will find good homes.

I’d love to be in Toronto June 16 to cheer these generous donors on, but my horoscope stresses that travel is out. You can be sure I’ll be there in spirit, however, or Skype, or maybe even FaceTime, assuming a young person can show me how.

Fatigue and insomnia do not good bedfellows make

baby yawning with eyes closed

Sleep has been hard to come by these days. Soon after my final deadline was moved up, I started spending a good portion of the night stewing rather than snoring. I’d awaken in the middle of the night and take hours to fall back to sleep. My mind was consumed with thoughts of death.

Lack of sleep is not good for me, or for anyone, for that matter. When I’m exhausted, I’m an emotional wreck, and you know how crying makes me bleed. Chronic exhaustion affects all aspects of my functioning during the day. My concentration is shot, my balance is off, and I become a danger to myself. J. wisely hides my car keys, as she should.

We psychologists are stoic ones, hesitating to ask for help unless we really need it. Insomnia? No problem. I know how to manage that, as I’ve proven through past sleep disruptions.

Through this most recent upheaval, I kept to my usual wake-sleep schedule, I tried not to nap unless my body demanded it, and I maintained my usual bedtime rituals to ready my body for bed, i.e., completing my bathroom routine (yes, flossing included), taking my bedtime pills, and finally reading in bed until I was drowsy. Once lights were out, or if I woke during the night, I shifted focus to my breath, which often helps me fall asleep.

Despite my efforts, nothing was working. Out of desperation, I did something I never thought I’d do: I asked for help. Pharmaceutical help. My medical team obliged without hesitation. Within minutes, I had a prescription for a highly addictive anti-anxiety medication awaiting me at my local pharmacy. I requested the lowest dose possible, but I was advised to allow myself to use what I needed to benefit me.

I have taken one of these pills every night since they were prescribed, and on one occasion, with great hesitation, two pills. Some nights the medication is more effective than others. I was concerned I might feel hung over in the mornings, but my quality of sleep has improved greatly and I wake up feeling as refreshed as a chronically fatigued person can feel.

I realize I run the risk of becoming addicted to these pills, but this point in my life, does that really matter? So I am doing something I never thought I would do: relying on medication to help me sleep. And I’m trying to tell you without feeling embarrassed about it. If you were in my shoes, I know I wouldn’t judge you. Why am I always so much harder on myself? Maybe it’s time to give that up.

The pills are not a panacea, however. My sleep is still poor some nights, and even after a good sleep, I’m still fatigued, especially if I’m anemic. After a great sleep on the weekend, I needed a nap by 11 a.m. Countering the insomnia has not eliminated the fatigue; it has simply eased it until my next red-blood-cell transfusion.

I am scheduled for two units of little reds tomorrow. I envision an excellent sleep Tuesday night, and a perky day, or maybe even a week or two following. And my pharmaceutically improved sleep can only help. Now, if I could just take those little pills without shame….