Sleep Apnea Angst

Once upon a time my husband and I slept in the same bed. He expressed some concern about my sleep time breathing. No, it wasn’t snoring driving him out of our marriage bed; Inhaling and exhaling, a normal part of life, was rather loud. At times my breath seemed to stop. He would wonder if I was still alive, and I don’t know for certain, perhaps he even checked for a pulse. A gasping, gurgling, struggle for air would ensue then respirations returned to an elevated decibel, enough to lure him to another bedroom. My comments included his own ability to cut down the Pike National Forest. He wasn’t fazed. A queen-sized bed wasn’t large enough for the two of us and made his den of slumber across the hallway.

Ready to admit I can be a little slow on the uptake (taking the hint), my nighttime attributions must have swum a short distance down the gene pool, from Mummy (who could rattle window panes in the frames while she snored) or Daddy, a heavy breather happily sleeping in a single bed four thick plaster walls soundproofed from Mum. One of my sisters has dominated the King sized bed away from her husband while he too acquires his rest in a room away from her snores. It runs in the family, I found solace in thought.

In recent months I took the opportunity to show off my historically low to normal blood pressure for a class in health care. Expecting ooos and ahs, I was shocked to see a BP (blood pressure) of 143 systolic over 89 diastolic. Whiskey tango foxtrot, batman! I have Hypertension. On break I called and made an appointment to see my doctor.

Not very long after, just a few days in fact, I began to feel as if I had been up all night. The BP was still measuring concern, I even acquired my own BP machine, something I never anticipated a need for in life. When I finally saw the doctor, and the time frame was ridiculously long, I wasn’t feeling like a spring chicken. Nor a fall rooster, more like a slug. Cutting to the chase I requested to have a sleep study, suspecting sleep apnea. A long wait ensued to get the call from the sleep lab to set an appointment. Of course I consulted Dr. Website, even gave thought to have my tonsils removed. That didn’t happen.

Post sleep study, an event not wished upon anyone, I received a quick response from the doctor’s assistant while shopping. I had been diagnosed with SEVERE Obstructive Sleep Apnea. The way the assistant put it you would have thought I had a truck parked in my throat. With flat tires. Oh, and I need to have the sleep study redone as to have proper CPAP therapy. I was in the grocery store, and I found myself laughing loud enough other customers gathered to see what I found so funny in the canned vegetables. My titration levels have to be tested. What every girl dreams of! The medical assistant wasn’t able to properly define exactly what titration is, but I have discovered the medical field is not completely populated with rocket scientists.

Eventually the sleep lab gave me another appointment, weeks out. Wouldn’t you know, the day of that appointment I came down with a bladder infection. Going to pee every 30 minutes is not conducive to a good read of titration, so again I was rescheduled weeks out. Expletives were mumbled.

The redo was quite the experience. The technician of whom was to take command of my test had laid out all the goop, wires, tubes, masks, tapes, clamps, plugs, boxes. I fainted when I saw all of it. The previous test tech had discretely keep all the apparatus out of site, even apologized for having to put paste in my hair. This little fellow kept reminding me how he had to do his job, while I sat in the chair and became restrained with stuff to find my cure. Across the hall a child cried loud and without end. I feel ya, baby.

The morning came and at the cheery hour of 5:30 am he burst in the door, announcing the test was not successful, I would need to do another test. All I could think was could I just take this stuff off my face and get some shut eye? No. Getting me out of there was again a part of him needing to do his job. His social skills could use a fresh up. The child started crying again, and all I could think was, “Hey, kid. What do you say we go to Starbucks and share our awful experiences. I’ll buy. Mommy can come, too.”.

A copy of the test arrived in the mail and 3 months later I am just beginning to understand the results. Another 5 weeks passed before my health provider, AKA doctor, could see me. No wonder the health care in the United States sucks. I was informed and not for the last time, my Severe Obstructive Sleep Apnea is amongst some of the worst they have ever seen. I needed the equipment, a titration level was chosen, rather settled upon. Three Weeks passed before I got an appointment to get the equipment, and it happened because I called them, they squeezed me in.

Respectfully, the delay in receiving my equipment is due to the overwhelming need for respiratory therapy in the wake of the Covid 19 pandemic. The Oxygen companies are beyond busy, they say it is absolutely nuts with demand. Not having contracted the virus is a bright spot in my life. Keeping safe, keeping those I care for, live with, is positively fore front in my mind.

The Respiratory Therapist is a lovely lady. In another time I think we could be friends.f Because of the professional relationship it would not be appropriate to suggest lunch. I don’t think she would find it palatable to have lunch and listen to me make fun of my Bipap equipment. Not Cpap, Bipap, meaning both my mouth and nose are covered in my new life of sleeping under the gear that looks similar to the game of “Cootie”.

Retro Educational Technology: The Cootie Game
A cootie.

My cat has stopped sleeping with me. I have tried 4 different styles of Bipap masks and have come to accept my husband isn’t going to be sleeping with me anytime soon. The first time he saw me in all my glorious gear he held back his laughter. His thought was, “My wife looks like a Cootie”.

The adaptation to sleeping with Cootie wear took some time. Trial and error, mask leaks (more like standing in the wake of an aircraft waiting to take off as the mask practically blows off my face), worry the machine quit, not getting enough air, and learning I am a mouth breather (And a swimmer, how do you think I make it across the pool?) hence the need for a chin strap to keep my mouth closed (Did I fail to mention I am claustrophobic?). I was directed to Amazon, not the adventure type, the shopping site, and was mortified to see some of the options available.

Best in Rest CPAP Chin Strap - Oxigo
Oh, yippee.
Mid Neck Surgical Chin Strap | FM100B - Medasun
I feel pretty.

Instead of wearing more clothing, I found mouth strips, basically taping my mouth shut while I sleep peacefully under the triangular shaped mask of which I now find a small amount of solace. I have a small face, smaller than the manufacturer’s idea of small. The bridge of my nose is non-existent, so to keep the mask on, the air flowing into my lungs, and the roof on my house, I tighten the straps just to the point of a headache. The straps look like this: This is just part of my Cootie look.

AirTouch F20
A hose attaches to the fitting in the very front, and the hose is attached to my machine.

I am getting some sleep and have become accustomed to my nighttime routine of suiting up. Unlike the days previous to this lengthy ordeal (It is the end of August 2021, the journey to this solution began at the end of this February. On my birthday, no less.) I am feeling rested, humored, and can’t wait until my husband climbs back into bed with me for a good spooning. When the cat comes back to nest with me I will know they both still love me no matter what I am wearing. That will be something.

Dreaming in the Daylight

There he is again. Interested, playful, handsome in the truest sense of my mind’s construction of a handsome man. We made out in private as the world waltzed past without notice. The sense of joy to have been in one another’s arms again held us together with electromagnetic force. “I’m married,” I confessed. “I’m involved,” he laid out truthfully. She came in the room. Without drama she told me she was glad to have met me as she led him away.

“We will be together again,” Handsome called back over his shoulder to me. My husband shouted, “Your breakfast is on your plate!”.

My eyes opened. Awake, damnit. Staring up at the top of my bedroom, I am crestfallen, watching the dust stuck to the blades of the ceiling fan. I feel as motivated to move as the dust would be to get up and boogey. I don’t want to get out of bed. Staying in bed I can feel the force of the mutual attraction. Breakfast is not on my plate. The Husband is down in the basement, tapping away on the computer keyboard, designing a dream home for someone other than me. Six years ago Husband had some renovation started on the interior of our house (without consulting me) and some of the holes are still open in the walls and ceilings. The rest of the day will be like this; solitary full of holes. I will go to bed in the evening far from having had any passion. I want to slip back into the dream, spend more time with Handsome. We had so little time together.

Sitting on the edge of the bed I reviewed how I met him. How we hit it off. How in the morning he promised to come and see me again. He worked as a merchant sailor, didn’t exactly know when he would be able to return. I lived in northern Michigan. He lived in Florida. I forgot to give him my phone number, and despite holding out hope he would call or return, I had enough experience with men at that early stage in my life not to hold on too tightly to the notion I would ever see or hear from them again. We were two ships that passed in the night, that was all, I convinced myself.

A couple years and a few months later I looked up from my barstool to see him looking at me with a deep intention to get me to notice him. We left the bar. I remember his touch as he held my hand and we walked along the waterfront joined in the same electromagnetic force. It was never so easy to be with someone else. The time sped by, he had to go on watch, go to work. His ship was leaving the port within a few hours, headed for the next load. He was an officer, had to hold up his end. I respected him for that. I was in pursuit of the same work. Before we parted he asked me to come to visit him in Florida during winter when we were both free to spend as much time together without worry of the time or exams. In the time between then and our first meeting, he had come back to visit me. He gave me facts only gathered by having been there. I trusted our shipping lanes would cross again. Handsome gave me his address. “Please write,” he asked with a sincerity I trusted. He knew how to find me, I sent him my phone number. I never heard from him.

The next time I saw him was in the dream. Handsome was the same as forty years ago. Why in the Freudian world was I thinking about him? So much has happened. My life has been turned upside down, righted, floated to different destinations. The only part of me that has not changed is the desire to feel what I felt when I was with him, appreciated, wanted.

The fellow who sets me up with the chosen Medicare company has the same last name as Handsome. He looks uncannily like him. I called my the agent to ask if he would talk to a friend of mine about Medicare even though she lives a good distance from our town. Yup, of course, he’s a salesman. “Its a common Swedish name,” Mr. Medicare explained when I garnered the courage to ask if he might be related to Handsome. Secret from Husband, I was hoping he knew him.

An election recently was held for all the city commission seats in town. The candidate running for the seat from my district whom I chose to vote for also has the same last name as Handsome and Mr. Medicare. When I voted for the dude I didn’t entertain any notion of relation. I just voted.

The day before the dream a woman stood at the corner of happy and healthy holding up a campaign sign for Candidate Common Swedish Last name. I gave her a thumbs up (I hate it when I make that gesture. It’s so un-lady like).

I find myself day dreaming about Handsome. I think about the people who may know of him, what happened to him. How to reach him. Wait a minute, I remind myself. Two encounters over forty years ago, what am I thinking? I wonder about Handsome, tell myself something came up for him. Maybe he isn’t even alive. Maybe he was painfully shy. Maybe, just maybe I could find a way to reignite some passion between Husband and I. I’ve crashed and burned a number of times. But like a good dream, I have a hard time letting go.

A Wedding, Lakeside

Everyone looked nice in their casual summertime best. Smiles were everywhere. I know we were happy for the groom, we like the bride. The groom and his guys looked great and all sported a boutonniere reflective in the maids’ bouquets and the brides, too. A well wished-for breeze blew over the lake. I overheard many a guest exclaim gratitude for cool.

The groom directed us over to a little island just a spit from the shore. We gathered there for the big event we came to witness. The wedding party stood up front at an Arbor. They were just as joyful as the guests. A guitarist quietly played an Isley Brothers love song, sang very low as it seemed he may not have known the song. He played it again. Repeat. Repeat and keep playing until the bride is standing up front.

A nervous chuckle, giggle, exhalation stirred through the group. All eyes were on the groom. His eyes were on the road. We also looked at the road. The bride is late.

A bridesmaid leaned in to tell the groom something. He grimaced. Then he went back to watching the spot on the road she would magically appear. Not too much longer, long enough to hope for the best (the food sure smelled good). Guests starting to shift their weight (all of us stood), reposition clothing, hats, look at the road…

As if on a generous swish of exhale, she came around the bend in a 1960 vintage Ford pickup truck, chauffeured by her son.

So, the guitarist got to stop the endless cycle of something along the lines of romance music from the late 60’s. The star couple hit the dirt with a promise to honor love respect blah, blah. I thought for a moment it might be time to eat! The bride was teary eyed through her reading of her vows. The groom read a poem in a monotone. The poem was sweet, as if composed by a seventh grader. “Wait. That’s not the right one,” he turned to his best man. Best man dug in his pockets, came up with a folded sheet of paper. Then the groom gave his true vows. He started with, “You are the love of my life.”

Its written all over him.

Then we did all the traditional things, congratulations, bride gave hugs, we crossed the water to the picnic pavilion. There were trays of snacks, shrimp, chafing dishes of hot food, cold food, a washtub of bottled wines, coolers of beer, rumors of bottled water. A model train made a continuous loop around the wedding cake and trays of cupcakes. A miniature bride and groom stood at the back of the caboose.

The guitarist started us off with “Annie’s song” and I knew he had some tunes to play. He forwarned us to pick a wooden train whistle as there would be a Rolling Stones song he needed us to use the whistle for. I had fun with that song.

So, there was joy in the air, love everywhere. Hand shaking, singing, dancing, drinking and splashing. Pats on the back, laughing, hugs. What a time.

Not a face mask to be seen.

Wish us well.

No Wheels high Stress

Earlier this month, I went to Southern California. My niece is very ill. Her parents, my sister and brother-in-law have been doing what they can to help her and care for her, 3 dogs 2 cats and sometimes themselves. That’s my regular day at work, so going to warm weather was my own bonus.
  A visit to the beach was not on the itinerary. Trips to her doctor, the pharmacy, etc. took up my day.  I’ve been stressed out ever since.
  My return to Colorado was greeted with cold, cold weather, snow upon snow and to top it off my car would not start. 
My husband has been kind enough to let me use his for the necessary trips to work.  I have had to pull out the “Me first!” stopper.  Humility has me feeling pathetic. A cup of Tension Tamer tea hopefully provides a smidgen of  calm.  This has been a tough week. 

Happy Holidays With Heart

I’m happy you had a fun time at Christmas.  It is good respite to have laughter and good company.
A week from today I am flying to San Diego to give my sister JoEllen and her hubby Ed a respite from caring for their daughter, my second niece, Dee.  Dee has cancer, an aggressive type of which was found in her tongue, a cancer found inside a cancer and what has spread to lymph nodes.  She has not eaten in months (a good 45% of her tongue has been removed) and has lost 60 pounds.  My goal is to give Jo and Ed a well deserved break and to be with Dee.  Her son, my nephew, is also doing what he can. He is heavily immersed in becoming a nutritionist.  Nick needs a break, too. Her daughter is in college, away from home.  When Lauren is home, she is said to be a stellar caregiver.
I do not expect to have a Southern California vacation at all.  Jo and Ed are 86.  Jo is using a cane and I hear through the sister telegraph she is considering walkers.
As for the other two of my sisters:
Susan, in the course of 3 months has had her shoulder repaired, two cataract surgeries with lens replacements and is now recovering from a knee replacement.

Linda was at the dog park with her adopted pooch when a dog ran directly into her and broke Linda’s leg.  She was in a wheelchair for at least a month, and without her late husband Dennis to take care of her(he was that type of guy.  He helped take care of my mother and held Mom’s hand as she passed away.  I’m going to cry thinking about all of them and all of this.)
Christmas was a nearly complete bust for me.  My husband did not even so much as wish me a Merry Christmas on what used to be my get down and rejoice favorite holiday).    Because of his refusal to acknowledge its importance to someone other than himself, I gave myself the gift of an Instant Pot (I have mastered pressure cooked hard-boiled eggs) and to put myself first in this relationship.  He and I do a split on expenses: he pays the mortgage, I pay the utilities and buy the groceries.  I used to include beverages such as soda pops, juices, chips, cookies, some candy, his personal items ie. shampoo and toothpaste, but those are now off the shopping list.    He did offer to buy a new set of pots and pans, but when I asked him if that was supposed to be a gift to me so I can cook for him, I not only declined the offer, I reexamined my drive to do almost all the cooking.  I gave myself some new behaviors.  When its time to even THINK about dinner, if I am not feeling it, I do whatever else I am feeling.  It even gets him to set the table and put something together.
I thought of you during the Christmas Advent and beyond.  I would have sent you a Christmas card but I do not have your address.  On New Year’s Eve day I went to Michael’s and bought a tabletop Christmas tree and a couple of picture frames.
As far as my February b-day is concerned, its usually a Christmas-like dud around here.  Just like my wedding, I don’t own it.  Last year I chose to work all day on the blessed occasion. I didn’t tell anyone it was my birthday and relished in the freedom of not being disappointed and having a secret.  The client I was with was at the end of her life. I sat and watched her breathe, helped the Hospice nurses and CNA’s and alerted her son when their Mom needed more Morphine.    You may think I am being tongue in cheek about it. Nope.  The client was someone I enjoyed every minute with, who taught me some care skills (she taught nursing) I have since shared with others in similar situations.  Staying with her, getting to kiss her goodbye and wish her a good journey was fulfilling.  Caregiving fills my heart and replaces the loneliness I have felt for years.   The next day Rand exclaimed how he didn’t even get me cake!  I invited him to do so. Like most things that do not involve only himself, I never saw any cake.  I think I chose wisely.
He usually conjures up his romantic side from the depths of his soul for Valentine’s Day.  His romantic self is kept in solitary confinement 364 days a year. The poor out of practice Romeo crawls out of its unlit, airless cell.  It raises up its head  like the Steve McQueen character getting a haircut in the movie PAPILLON then asks, “How do I look?”.  Pretty rough around the edges, crosses my mind. I say, “You look good”,  not to be an ungrateful battle ax or doom any possible future Valentine’s Day.  Last year was over the top for him:  I don’t remember anything particular about it.

I booked my flight to Southern California not long after Christmas, feeling the need to get out of here on my own terms.  He can take care of the cat’s litter box.  I will be gone on Valentine’s day. I don’t want to be disappointed.

Life is so very short

I am a very lucky girl.  On my fortieth birthday, I spoke with my father over the telephone.  At the end of our conversation, I ended our conversation with, “I love you.”  He replied, “I love you, too”.  It was the last thing he said to me, my dad unexpectantly died that night.

A friend of mine recently passed away.  She left us without surprise.  What she left was a large family and a long 97-year life of love and many friends who came and went before her, numerous still remain.    Phyllis Bacalis was one of the best people I have met in the twenty-one years I have lived in Colorado and in all of my 66 years.  She had a way about her. A person could not help but be swept away in her sincere charm.  She was kind, generous, honest, smart.  She taught me acceptance.  She showed me there is a difference in what matters and what to let go of.  When my heart was broken at other losses, she was there to comfort me.  She knew the pain of losing a loved one, more than I could ever imagine.  Many times she would lament, “I just want to go be with my Paul”. (Her husband who passed before her).

I had the distinct privilege of being an in-home caregiver to her. Everything I did for her was appreciated.  Anything anyone gave to her she appreciated with great joy.  I do believe she kept every single card and gift ever given to her.  Anything I picked up of which had been a gift to her, Phyllis would reminisce the occasion and the person, telling me something wonderful about them.  The only time she grumbled was at the squirrels in her back yard which went after the seed in the birdfeeders or a bad golfer going after their ball onto her property.  They had crossed the line.

She rarely ventured into self-pity, and despite her physical pain, she complained very little. At most, she would say, “Oh, me” and then move on to another and better thought.  She found reasons to appreciate life in the wildlife venturing about her property, the flowers growing in the planters, birds swooping in for seed, and just being on her back porch in the summertime meant much to her.  If it seemed she didn’t understand, it was because of her impaired hearing.  She was brilliant, hers was a very sharp mind. Each time I went into her home to care for her, the way she expressed her appreciation to see me won my heart over and over again. For that reason, I could not do enough for her.

Phyllis Bacalis quietly taught me many things in the ways she was Phyllis.  For her, I would like to tell you to always be grateful, always find a way to express love and joy.  Let the small stuff go, be kind to one another because life is much too short.

Phyllis will be missed.  I went to see her just a few days before she went to be with her Paul.   I’m a very lucky girl. As I turned to leave I blew her a kiss and said, “I love you,”.  And she said to me, “I love you, too”.



The shoe drops

Finally, someone brave took action. Thank goodness for the sake of goodness. My head said ENOUGH is ENOUGH. Someone has to step up, stare down the blob of blonde (this week) and take them on. This is OUR country. The country has been crying for the blatant abuse of position to come to an end. Finally, I again feel hope our Democracy will survive. Its been 3 long years.

A New Moon

The magic bullet! I’d prayed for it, long ago, back when I was a chubby girl. Why did I have to endure the slow metabolism gifted to me? Life was painful. I was bullied everywhere I went excepting church and Girl Scouts. I would wish and wish for the overactive thyroid the underfed bullies seemed to have. Fifty some years later, I got my wish.

There are times I feel as if a lamprey clings to my throat, sucking and sucking the last breath and word out of me. It is difficult to speak, swallow, think.

The warm spring season is to me oppressively hot. Everyone it seems to exult in the fair temperatures. I want to bite their heads off, this is Death Valley to me. Sensitivity to temperature is an understatement.

I have lost weight without trying. Muscle mass is being replaced with empty skin. Strands of hair clog the drain, hairbrush, carpet my bathroom floor. Brittle ends fly in the air with the Zodiac dust. One pass of a pocket comb my hair hangs lifeless as a straw broom.

I sleep in the afternoon, a fitfull thing. Perhaps I rest to get a break from the headache I’ve had for a month, maybe longer. The left eye has the sensation of a baseball bat pushing it from behind, sort of like an ice cream headache without the actual treat.

A walk uphill and my heart is pounding. It takes about four steps up to kick into overdrive, a very long time to slow down. My stomach joins in, a hammering duet of bodily discomfort. Sometimes I feel faint. The world swirls around. I grab anything tied down: the counter, staircase railing, a tree, brick wall, anything. This is not the life I expected of my body. I thought thin would be easy. Not a joyride at the carnival at all.

Look up symptoms of hypothyroidism. I have experienced all except a goiter. Two weeks from now I will have a nuclear test to get a good look see of the beast in my throat. Yippee. I wonder if I will glow in the dark. Shut off all the lights: on night of the new moon you may see me.