Seeking a Diagnosis ©2016


I wiped the fog from my glasses, and read the sign on the double glass door. “Sleep Clinic patients please wait by the door and the technician will be down to get you”.

Maybe I was a little early for my 9 p.m. appointment. I raised my wrist to check my watch, but it wasn’t there. The instructions had said “leave all jewelry except wedding bands at home.”

With my overnight bag in hand, I waited. The building cleaner came through to vacuum the doormat and we made small talk about how difficult it is to keep the mats clean in winter. Another few minutes passed. Finally a young woman in burgundy-coloured scrubs pushed open the door.

“Judith?” she asked, referring to a folder in her hands.

“That would be me.”

“Hi, I’m Amanda. Follow me and I’ll take you to the clinic. Do you prefer stairs or the elevator?”

I followed her up the stairs and down the hall.

“This will be your room,” she said, indicating a room on the left. “You can change into whatever you’re going to wear to bed and then come back out to the waiting room.”

I was there in that five-by-eight-foot examining room because my doctor and I were trying to discover the cause of my too-frequent pain and fatigue in various parts of my body. A sleep disorder that would deprive me of adequate sleep, was one possibility. A bed had been prepared, and a camera peered down at me from one corner of the ceiling. I quickly changed into my yellow Bourbon Street t-shirt and yellow cotton pajama bottoms, telling myself that the camera would not yet be turned on.

Through the open door of a room adjoining the waiting area, I saw a man being connected to a number of wires. When he emerged, he had wires protruding from his head, his face, his shirt, and others dangling from a box that hung from a lanyard around his neck.

“I feel like the robot guy,” he said, with as much of a grin as he could muster under the circumstances.

“Judith, you’re next,” Amanda said.

“I’m going to measure your head and fasten some electrodes to a number of spots so we can read your brain waves while you sleep,” said Amanda. “While I do that, Carolyn is going to attach some more to your legs and to your chest.”

The room smelled of oranges, probably the remnants of someone’s snack, and rubbing alcohol.

They had just begun positioning straps, and swabbing areas for the electrodes, when an alarm sounded somewhere and Amanda went to investigate. She came back with the news that there would be a power outage while a problem with an electrical panel was being rectified. The lights weren’t affected, but the room monitors were.

Does that mean I get to go home?

The now-familiar pain was beginning to creep into my neck and shoulders. The desire to sink into the comfort of my own bed to drift off to sleep was compelling, but no such luck. Amanda and Carolyn continued with their work, applying cool gels and other goop onto my skin and into my hair.

Good thing my hair is short!

Before long my wiring was complete, and the power was back on. Eighteen wires were plugged into the metal box that dangled from a black and red cord around my neck. A nose-piece was attached below my nose by a strap that looped over my ears and joined at the back of my head. This was to check my breathing, Carolyn informed me. A band holding a couple of other wires was around my chest and another encircled my waist.

Now I have to confess that when it comes to sleeping I’m like “The Princess and the Pea.” I can’t get to sleep if my nightclothes or sheets are bunched up or twisted, and I don’t like anything but the covers touching me while I sleep.

“Am I really supposed to sleep with all of this stuff hanging from me?” I sheepishly asked Carolyn.

“Sure,” she replied. “I’ve done it. You don’t need to worry about them. They won’t come off, and if they do I’ll go in and put them back”

That wasn’t quite what I was worrying about, but I tried to be positive.

At last I was in my bed and all plugged in. The system check was done. An infrared light was clipped and taped to the second finger on my left hand. The mattress and pillow both felt hard to my sparsely-padded body and they crackled every time I moved.

“If you need me for anything just wave that light three times and I’ll come in,” said Carolyn. “You can go to sleep now.”

Yeah, right.

In the dark and silent room I had no problem closing my eyes, but the rest of my body would simply not cooperate. I switched from my back to my right side, to my left side and back again, ever conscious of the extra, fine appendages now sharing my body. I pulled the covers up high; I threw them all off. My bent legs ached. I stretched them straight out. My nose itched. I scratched it. Something felt tight across the tops of my ears when I lay on either side. How long did that go on? It seemed like hours, but I could only guess. There was no clock in the room.

Suddenly I heard a voice and felt someone touching my hair.

“It’s only me,” Carolyn said. “You’re sweating.” She adjusted the connections on the back of my head and left.

I gave a grunt and squeezed my eyes closed again.

I didn’t know I was sweating. I guess I must have finally fallen asleep. Can I go back there?

It wasn’t to be. The tossing and turning began once again. There were times when I felt my mind drift into nothingness and I was sure I was on the brink of sleep, only to have a leg give a jerk, or another itch require attention, and I was back to the reality of my torturous sleep deprivation.

When Carolyn next came into my room to adjust my heart monitors, I was still awake.

“You’re having a hard time sleeping, aren’t you? You’ve been awake for a long time”

“That I am.”

“Well there’re still two hours to go, but if you haven’t gotten to sleep in another hour, just wave your hand and I’ll get you up and you can go home.” She didn’t tell me how I’d know that another hour had passed. A few tears trickled from the corners of my eyes and I quickly wiped them away before they flowed under the electrodes.

Finally my body and mind relaxed, and I drifted into dreamland.

“Judith, it’s time to get up.” That now familiar voice penetrated my consciousness, and my whole being protested. No, no, I just got to sleep. Let me sleep some more!

Slowly, I pulled myself up and swung my legs over the side of the bed so Carolyn could peel the tape from my face, my legs and my chest. My skin smarted with each tug.

“So what happens now? Since I didn’t sleep much, will any of this have done any good?” I asked.

“We’ll have to see what the doctor says when he reads your results. You did sleep for the last bit so that may be enough. If not, you’ll be back.”

Oh, joy.

“Once you’re dressed, come out to the desk. We have a questionnaire for you to fill out, and then you can go home.”

I picked up the clipboard and squinted through my bloodshot eyes at the questionnaire.

How long did it take you to get to sleep?

  1. How long did you sleep?
  2. How many times did you wake up?
  3. Did you feel rested when you woke up?

Are they serious?

The sun was just beginning to lighten the day when I stumbled out to my car and turned the key. I looked at the clock, 6:00 a.m. As I pulled out of the parking lot the opening words to a Four Seasons song popped into my head. Oh, what a night!

A few weeks later, I was back. This time my husband dropped me off because I was required to stay later into the next day.

“There didn’t seem to be an indication of a night time sleep disorder, but I’d like to give it another try to see if you can sleep longer,” the specialist had said. “I think you should stay for a day time test as well.”

So I appeared at the appointed time and watched while I was once again prodded and poked, and taped and wired. I brought my own pillow with me this time, and some snacks to ensure that I wouldn’t get hungry before the lights went out. Perhaps that helped stave off the pain.

As before, the wires and clips prevented me from getting much sleep. Early the next morning Carolyn was at my side.

“I’m going to take some of these wires off now.  Then you can walk around; go down the hall to the washrooms. Did you bring something to eat?”

Bleary-eyed, I walked down the hall. The scent of toast and coffee drifted out from somewhere and my stomach grumbled. Back in the waiting area, I munched on a bagel and cream cheese that I’d packed into a cooler bag the night before, and wished I could find a toaster to warm it. While I sipped my water (coffee wasn’t an option in the Sleep Clinic) and tried to read my book, the room came alive with the sounds of chatter and doors opening and closing as the night shift left and the day shift arrived.

Soon a new female voice was calling my name.

“It’s time for you to get back into bed, Judy. I need to hook you up to the sleep monitor, and then I’m going to turn out the lights. If you go to sleep within fifteen minutes, I will let you sleep for fifteen minutes. If you don’t I’ll get you up again.”

Well, I was definitely tired, the room was dark and silent, and all that remained of my clusters of wires were a few on my head and the one clipped to my finger. What else would I do? I went to sleep. Fifteen minutes later I was awakened.

“You can walk around, or read for fifteen minutes now,” the technician said. The routine for the next couple of hours was set. Each time I got a little more sleep, until I was finally told that I could go home.

I called my husband. “I’m ready to leave, but I’m going to start walking. I need some air and exercise. Watch for me along the way.”

The sun was warm on my face as I breathed in the fresh morning air.  I ran my hand through my hair and my fingers dislodged a clump of clay, and then another. When my ride appeared, I climbed into the car and flipped down the vanity mirror.

“Good grief, what a sight I must have been to those who’d passed me on the street, a weary looking woman with spikes of gray and charcoal hair stuck together with glue, and a pillow under her arm!” My husband chuckled.

I wish I could tell you that it was all worthwhile; that a cause and cure for my pain had been found. But that wasn’t the case. I was diagnosed with “possible daytime drowsiness” which meant I shouldn’t do any long distance driving, and a slightly irregular heart rate. I was given a prescription for Ritalin to control the daytime drowsiness, despite my telling him that I didn’t understand the necessity. After only three doses my heart rate went into overdrive and I refused to take any more.

My family doctor, following due diligence, then sent me to a heart specialist who, after stress tests, Doppler tests and monitors could find only a very slight, and quite common, heart irregularity. My cholesterols were exactly where they should be. Still he felt he should give me a prescription for something, which he admitted I didn’t really need.

“Will it relieve my pain?” I asked.

“No, but it might prevent you from having a heart attack or stroke in twenty years.”

Sometimes there just isn’t a magic cure. Sometimes you have to listen to your body and do what you can. I’ve figured out some triggers for my pain and have learned to avoid them. Some days I just have to give into it and take the day off, knowing that it will pass and tomorrow will be better.

Book cover2This story is one of 81 chosen through competition to be included in this Anthology of Women’s Memoirs, which was published on January 8, 2016 and was the recipient of an Honorable Mention Award from the New England Book Festival. You will find it in Reflection Pond. The books can be ordered (e-books only) on Amazon.com and Amazon.ca

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In the Blink of an Eye


My plan, last month, was to start writing blog posts about the preparations needed to take a trip to China. On September 25th, one week from today, we were scheduled to join a twelve day tour with friends of ours. We’d booked this trip through the local Chamber of Commerce back in May, and until three weeks ago we were counting the days.

But, life can change in the blink of an eye. On Tuesday, August 23rd, Jim and I walked across the soccer field to the Hastings Field House to play pickleball, something we’d been doing three or four times a week all summer long. I was feeling fit and strong and happy.

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Hastings Field House

Two hours later I was lying on a bed in the emergency room at our closest hospital. At the time I wasn’t clear how it had happened, but somehow I’d thrown myself off balance while trying to hit a ball, and before I could move an arm or leg to catch myself, I landed on the floor with such force that it knocked the wind out of me. My right hip hurt and I couldn’t put any weight on my leg, but I couldn’t believe that it could possibly be broken, because it didn’t hurt all that much. I sat in a chair and watched while someone else stepped into my place and the game was finished, at my insistence.

However, when they tried to get me into a truck to take me home one movement caused me to gasp and suddenly I had no control over my leg or foot.  I had to admit that it was more than just a bruised hip. I was still optimistic, hoping it could be a dislocation that could be easily remedied. Instead of going home, my friend drove me to the hospital while Jim followed in our car. X-rays were taken of my hip and the conclusion wasn’t good – a fracture. They’d hoped to transfer me to Peterborough Hospital for surgery later that day. I had to fast until they learned that it wasn’t going to happen.

It was Thursday morning before I was loaded into a patient transfer wagon for the rough, hour-long trip. At 7:00 that night I met my surgeon outside the Operating Room. I was going to require a whole hip replacement! My optimism went out the door.

off-to-surgery

Off to Surgery

I asked if I’d still be able to go to China in a month’s time. One nurse in the Emergency Room had told me that I’d be up walking the day after surgery, after all.

“Not going to happen,” said Dr. Lever. “You would have to have a load of blood thinners on board because of the risk of blood clots, and your extended health insurance wouldn’t cover you if anything happened as a result of this surgery. Do you have cancellation insurance?”

“Yes.”

“I’ll sign whatever forms you need to get your refund.”

“We usually leave for Arizona the middle of October, in the motor home.”

“Sorry, I don’t recommend that either.  You should stick close to home until your full twelve-week recovery period is up, for the same reasons.”

As they rolled me into the operating room, just before the anesthesiologist did his job, a few tears escaped from my eyes.

ceramic-joint

What my new hip joint looks like

The Emergency Room nurse was right – I was up walking with a walker the next day, but it was obvious that there was no way I’d be ready to do any hiking in China in just four weeks, other risks or not.

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Third Day: Sitting up in a chair, filling out forms

By Sunday I was out of hospital and on the road to recovery, but instead of completing preparations for our trip to China, I’ve been filling out forms to get a refund for it through our Cancellation Insurance, and cancelling the extended health insurance. We will also have to adjust our insurance and our arrival dates for Arizona, but we will go. And maybe next year we’ll go to China.

Are We an Over-drugged Society, Part II


When my ninety-seven year old mother was visiting at Christmas and she missed her supper-time meds because we were out one evening, I was concerned about her taking them when we got home, and then taking her bedtime ones shortly after. She, of course, had no such concerns, “They’re only a vitamin,” she said.

After she’d gone to bed I took to Google to see what I could find out about these “vitamins” that she was on. Because she lives in a Retirement Home rather than a Long-term Care Facility, her family isn’t informed of any additions or changes to her medications. My brother had asked her doctor recently if any of her meds could be the cause of her very recent and quick onset of dementia. He was assured that it was simply old age and the drugs had nothing to do with it.

We knew that she was on a mild anti-depressant (“nerve pill” as she calls it) as she has suffered from bouts of severe depression for most of her life. But, I was appalled to learn through my research that she was not only on two anti-depressants, but also an anti-psychotic medication, called risperidone.

When we took her home after the holidays, I asked the nurse at the Retirement Home, why Mom was on an anti-psychotic. Her response was “It was prescribed when she was getting really anxious.” She agreed that it might not be necessary and she’d ask the doctor about prescribing something else to be given only when needed rather than every day.

It was an item on the Global News program 16 x 9, a couple of weeks later, that caught my attention this time. More precisely, the words “Risperidone”, “Anti-psychotic” and “Nursing Homes.”

It seems that recently there has been an uproar in BC over the routine use of anti-psychotic drugs to “calm” the residents, some to the point of making them zombie-like, despite Health Canada warnings that these drugs should NOT be given to patients with dementia. It wasn’t until the children of some of these people began to ask questions and insist that they be taken off these meds, that an investigation began and new methods of calming the distressed, such as physical and mental stimulation, were introduced with great success. Changes are being introduced throughout the province of BC, but the practice of using the drugs is still prevalent in other provinces of this great country.

I understand that at ninety-seven Mom doesn’t have a long life expectancy, but she still deserves to live her last days with dignity. If her medications are causing her to no longer care about the things that were important to her, such as her personal grooming, then it’s time to take a stand.

The lesson here is that we Baby Boomers need to insist on being informed about our elderly parents’ health care and medications, just the way we did when our children were young.

Who would have thought that the day would come when parents would live long enough to become the children?

To get the whole story go to: Global News, Nursing homes routinely administer anti-psychotics

Diabetes – from a Loved-one’s Point of View


I find it sad when I see so many overweight people in North America. My concern isn’t because of the way they look, but because they seem to be oblivious to the health risks, even though they are well publicized.

A young woman who was a little overweight as a child, but slimmed down as a young adult has, since having a family it seems, given up the struggle to maintain a healthy weight. She’s been diagnosed with Diabetes.

A senior man who was diagnosed with Type 2 Diabetes and has other health issues that can be related to poor diet, finds it amusing to not only always eat whatever dessert is available to him, but to eat whatever his family or friends choose not to eat. His weight is rapidly rising and I warn him that if his Type 2 becomes Type 1, neither he nor his wife will be laughing anymore.

If these two people, and all of the thousands more that are putting themselves at risk, aren’t concerned about their own well-being, perhaps a look at how their poor health could impact their loved ones who will ultimately become their caregivers, might give them pause to reconsider. Having been such a caregiver, I can shed some light from this perspective.

“Do you wanna fight?” he asked as he smacked his fist into the palm of his hand.

He had a strange smirk on his face. I didn’t recognize him.

It was early in the morning and he had spent the night with me in my apartment. At first I laughed, thinking he was just fooling around, but when I spoke to him he didn’t respond. His eyes looked glazed. My heart leaped. Is this what he’d meant when he said, “if I start acting strange, give me some of these”, as he placed an orange package beside the bed?

“Leo, what are you doing? You’re scaring me. Do you need some of these?” I asked, offering him the square white candies from the package. He didn’t reply. I put one into his mouth and he chewed, still staring at me with that lopsided grin. Another one. Still he wasn’t responding. His legs started to twitch, very slightly at first. Then his arms and his torso began to shudder. His hands were clenched; his tongue moved from corner to corner of his mouth. His whole body began convulsing uncontrollably. Now I was really scared. I grabbed the phone and dialed 911.

“Ambulance please,” I replied to the query from the other end of the line.

Many questions were asked, for which I had no answers – date of birth, medications? All that I knew was that he was diabetic, that he was 43 years old, and we had only recently begun our relationship. I had a lot to learn. Until I met Leo, like many people, I had very little understanding of how devastating diabetes can be.

Over the next five years I experienced many such episodes, many far scarier than that one. I learned how to read the signs; I learned how to administer liquid sugar (Glucogone) by syringe when he’d taken too much insulin to counteract consuming too much sugar, and I was awakened early in the morning by his convulsing because his sugars had dropped too low. I became all too familiar with 911 procedures. I spent many hours waiting in the hospital Emergency Room until Leo was released. Besides the emotional trauma of it all, I often missed time at work. Since I was an hourly paid worker, that cost me money that I couldn’t afford to lose.

One time that remains most vivid in my memory is the morning when I awoke to a loud crash, in the house we were sharing with my daughter and her husband. Leo was gone from the bedroom. I ran to the kitchen to find his thrashing body face-down in front of the refrigerator, his wheelchair behind him holding the door open. I ran for the Glucogone while I screamed for my daughter for help. She and her husband ran up from their lower floor suite and I asked them to call 911 while, with shaking hands, I used the syringe to draw the liquid from one tiny bottle and insert it into the other bottle of powder, mixing them together slowly so as to not create air bubbles, and drawing the solution out again and jabbing the needle into Leo’s flesh. By the time the ambulance arrived the convulsions had stopped, but Leo wasn’t coming out of his daze. His glasses were broken and his face cut from the impact of his fall. I watched the paramedics load him into the ambulance, and took a moment to de-stress before throwing on some clothes to follow them to the hospital.

Leo was diagnosed with Type I (insulin-dependent) diabetes at the age of seven and during the next 38 years the disease would continually challenge him. Watching his diet and giving himself insulin shots was difficult for a young boy, and as a teenager he rebelled against the restrictions his illness imposed on him. His sugars skyrocketed at times. At the age of 21 his pituitary gland was removed to save his eyesight, but that meant he had to take more medication to make up for what his pituitary would have produced. By the time I met him he’d just been discharged from the hospital after having all of his toes and a portion of both feet amputated, the result of infection. He was a fighter though, and had been fitted for prostheses so he could continue to do the things he loved, like offering a helping hand to other people, and driving his car, and riding his motorcycle. However he was never able to take on another full-time job because his health was too unstable.

Each time Leo would go to the doctor for a check-up, he’d come back with another medication for a new health problem. In the spring of 2002 he told me that his doctor had put him on medication because his cholesterol was “a little high” (I learned later that he hadn’t quite been honest). Like many of his meds, it made him ill. I suggested he try changing his diet. Instead, he stopped taking the medication and increased his ice cream intake. I could see that he was growing weary of the fight to survive.

Returning from work one afternoon not long after that, I found him unconscious, the telephone and his orange package of candies beside him on the bed. I picked up the phone and made my last call to 911. The coroner confirmed that, as happens with many diabetics, Leo’s heart had given up. He was one month short of his 48th birthday.

To this day, the sound of an ambulance gives me chills, and an innocent twitch in the bed can wake me from a deep sleep.

It’s serious stuff, but it can be controlled. Yes, you might have to give up some of your favourite foods, and force yourself to take that daily walk, but what’s more important in life – the short lived pleasure of guilty treats, or sharing a longer, healthier life with loved ones? It’s your call.