Monday, December 23, 2013
Saturday, December 14, 2013
My father’s sister was known for her muscular calves. Aunt Hazel, or “Hazy” as we called her, had been a track star in her youth. She was much older than my dad, so I remember Aunt Hazy as a feisty senior citizen, when the only running she did was from the stove to the pantry. Her muscular legs endured, however. I remember sitting at the kitchen table in her Ohio farmhouse, watching her zip around in her cotton floral-print dress and orthopedic shoes, calf muscles bulging. For good or ill, I inherited those calf muscles. My ex-husband, John, had a pet name for my lower extremities: “Aunt Hazy legs.”
So imagine my confusion that day in the hospital when I looked down at my remaining lower limb to find . . . a stick. A chicken leg. The first time John saw it, he mumbled, “Oh, my God.”
I don’t know how much weight I lost in the hospital and after I returned home, but it was all muscle atrophy. The strong body I’d once had was gone. The achievements of a year’s worth of excellent nutrition and cardio, free weights, squats, crunches, planks, kickboxing, Zumba, and walking had been obliterated by my illness. I was a limp and floppy blob. There were two main reasons for my blob status: I barely ate anything and I spent most of my three months in the hospital flat on my back.
My first attempts at building strength were pitiful. Simply being propped up in the hospital bed was too exhausting. But as time went on I learned to grip the bed rail and roll to one side enough to use a bedpan. That was followed by other fitness milestones – lying on my side for a few minutes, sitting on the edge of the bed without fainting, and turning over on my stomach and lifting my head.
My biggest accomplishment occurred during the week I spent on the rehab unit of my local hospital prior to skin graft surgery. With the help of two nurses and a male orderly, I slid across a board and transitioned from the hospital bed to a chair, where my goal was to sit upright for ten minutes. This fitness regimen wasn’t exactly the Insanity workout from cable-TV, but it was a huge mental and physical shift for me. For the first time in months, I found myself somewhere other than a bed, gurney, or operating table in a position other than prone. There was no time to pat myself on the back, however. After reaching my ten-minute goal I was completely exhausted and dizzy – and I had to somehow get myself back in bed. This meant I needed to push myself from the chair and pivot to sit on the sliding board. I couldn’t do it. I didn’t have the strength and I didn’t understand how I was supposed to get a one-legged body to do what I wanted it to do. I started to shake all over as I realized I might very well fall on the floor.
Right then, it hit me: My life was changed forever. This body wasn’t the old, reliable friend I’d had for fifty years. This body was alien to me in every way. I didn’t understand how it worked. I couldn’t trust it. I wasn’t sure how I’d be able to live my life in it.
I didn’t want it.
It was high drama getting me back into that hospital bed. The nurses and orderly were scared I was going to fall, too. I was a trembling, crying mess. But they somehow helped lower me to the board and slide me back to the safety of my little bed island. I was so worn out from this ordeal that I could barely move.
It was a start.
A few days later, I was thrilled to be able to I transfer myself, without help, into a wheelchair. To celebrate, my best friend, Arleen, and her brother, Martin, took me for a spin around the hospital. It was a cold, late-January day, but I told them it didn’t matter – I had to breathe fresh air and feel the sun, if only for a few seconds. I did it, and it was glorious. We continued our indoor excursion, but after about fifteen minutes I was spent.
It didn’t help that I wasn’t eating. When first admitted to Shock Trauma, I was hooked to an NG tube, a feeding tube inserted through the nose that provides hydration and nutrition. Once that was removed, I continued to receive IV fluids and was offered cans of nutrition shakes benignly labeled as “chocolate,” “vanilla,” and “strawberry.” Privately, I thought of them as “pretty bad,” “vile,” and “the pink shit.” But the nurses insisted, so I tossed back those loathsome concoctions until I couldn’t manage another mouthful.
I was rewarded for my effort with solid food: Trays of sometimes-recognizable vegetable, starch, and protein combinations fresh from hell’s kitchen. My personal favorites were the fifty-shades-of-gray meatloaf and brick-baked chicken. (Not to be confused with chicken baked in a brick oven.) I’d usually manage to swallow a couple bites, especially after the nurses explained that my healing was slowed by my lack of eating. When the nutrition shakes showed up on my tray again, and I got the hint. So I tried my best to eat more.
|"Fifty-shades-of-gray" hospital meatloaf|
Maybe this is where I should explain why this is so bizarre. My problem has always been making myself stop biting and swallowing, not this weirdly anorexic relationship with food. The nurses said it was due to my pain medications and the constant general anesthesia, but my guess is the complete absence of salt, flavor, or real butter had a lot to do with it, too. The only time I had any appetite was when someone smuggled in actual food for me. The hottie brought me chicken noodle soup. A friend who owned a coffee shop in Baltimore brought me homemade soups and sandwiches. Arleen and another friend, Frank, brought me cranberry juice, teas, fresh fruit, and soups. (Yes, soup was my fave.) But it was a real challenge to eat the hospital food.
I remember how thrilled I was when, two days before I was to be discharged from University of Maryland, my dinner tray was delivered with a “VIP” card placed on it, along with a cloth napkin instead of the usual paper variety. I glanced at the covered plate, then looked expectantly at my nurse.
“Why does this say ‘VIP?’”
She shrugged. “Maybe because you’re an author.”
“Uh, OK. But why now? I’ve been here almost three months.”
“Maybe they just noticed,” she said.
I perked up. “Does this mean the food will be better?”
“No. It means you get a cloth napkin.”
Near the end of my last round of rehab, friends started bringing me treats. I had no interest in them. Arleen smuggled in some Thai coconut shrimp and it was delicious, but I could only eat a few bites.
The next culinary shock came when I was discharged for good. Imagine the abject horror of my fellow romance writers who were there to greet me on the day I came home. I found my house stacked to the rafters with chocolate, and I had to tell them the sad truth – I’d lost my taste for it. Along with my taste for coffee, sweets in general, Doritos, melted sharp cheddar, and anything too fatty, salty, or rich. In other words, every staple known to the romance writing community. It was downright blasphemy.
Thank God that once I started physical therapy and got back in the gym with my trainer, my muscles began to rebuild. And once I weaned myself off all narcotic pain meds, my appetite roared back to its previous vigor. I must report that coffee, chocolate, and cheese have reclaimed their proper place in my life, and I’m back to my familiar goal of trying tame my appetite, not boost it.
Goodbye extra-skinny chicken leg! Hello Extra Crispy KFC!
Thursday, December 12, 2013
After my head-on collision with ineptitude at the nursing home, I was thrilled that my insurance company allowed me to transfer to my local hospital’s rehab unit. It was a brand-new, clean, and beautifully designed facility just minutes from all my friends and loved ones. I thought it would be the ideal place to let my wound heal in preparation for skin graft surgery, which was the Holy Grail of this entire medical melodrama.
See, once I received skin graft surgery – and if there were no complications – I could continue on to more physical therapy and then, eventually, I would get to go home.
If I remembered correctly, home was that place where I could make myself a cup of tea whenever I felt like it. It’s where I could laugh with my kids, play with my two ridiculously goofy dogs, have people over for dinner, snuggle under the flannel sheets, listen to music while I tidied up the kitchen, and sit in the sunshine on the front porch and chat with my neighbors. Home was the place where the real Susan used to live, not this hollowed-out, barely-there shadow of a person I had become. I hungered for that simple little life in that simple little house, and I figured that my local hospital was the closest I was going to get to it at the time.
I was assigned a lovely private room with a big window through which I could see the actual sky. There was seating for visitors and a large, sunny rehabilitation facility down the hall. (There was also an en-suite bathroom with a big shower, but I was nowhere near ready for that great leap toward normalcy. I could only stare longingly at the indoor plumbing while giving myself a sponge bath or requesting a bedpan.)
The first night in my new digs was difficult, because I was still coming down from the narcotics overdose. And though I was immensely grateful to be anywhere other than the Pit O’ Despair Nursing Home, I wasn’t able to relax. It soon became obvious that the kind and attentive nurses and doctors on the rehab unit weren't used to dealing with an open wound like mine. And that terrified me.
As you might have noticed in previous blog entries, I’ve made an effort to gloss over the gory details of my medical ordeal. But this is where I need to explain the reason for my terror. Not only was I was weak, exhausted, confused, drugged, and in intense pain, what remained of my left leg was essentially raw meat. I’d never even dared look at it. It was an act of self-preservation – I didn’t think I’d be able to handle knowing what my amputation site looked like. So while at University of Maryland’s Shock Trauma Unit, I put a sheet over my face when doctors or nurses needed to do something with it.
But since most of the wound was on the underside of my leg, I was able to watch when Shock Trauma nurses applied fresh bandages every morning and night. It’s a damn good thing I did, too, because some of the nurses in the rehab unit had no idea how to bandage it. On my first night there, I had to talk the nurse through the process step by step. (First, you place sterile gauze on the open wound. Then, you cover the surgical staples close to my groin with at least two layers of sterile gauze. Next, you wrap the whole leg, starting at the amputation site and . . . )
Though this completely freaked me out, I tried to be tactful as I told this very sweet and kind nurse how to do her job. I didn’t want to piss her off, but I also needed my leg properly bandaged to protect the wound from infection. I was, essentially, at the mercy of these nice people. I was helpless. And though I knew they were trained health care providers who knew far more than I did about tending to the sick, this was my life. And the very nice nurse wasn't sure how to bandage my leg!
W. T. F?
After everything I’d been through – the surgeries, the the pain, the nursing home from hell – I now had to worry that these well-intentioned people at my local hospital might undo much of what the University of Maryland Shock Trauma team had achieved.
My concerns continued. The bandage would fall off every time the physical therapists would work with me, and sometimes that meant the amputation site would touch the plastic upholstery of the therapy table. I’d cry when that happened. I came to dread physical therapy, not because I didn’t want to do it but because I worried about my leg being exposed.
There were other problems. I had no wound vacuum, so the amputation site wasn’t being drained. The hospital had no heat lamp available to use on my leg, either. I asked my attending physician if my family could buy one and bring it in. He said no, that any equipment used on the premises had to be hospital-issued because of safety and liability concerns.
So there I was. Bandages falling off. No heat or drainage to aid in healing. Worried about infection. Worried that the wound wouldn’t be ready for the skin graft. I expressed my concerns to my kind but exhausted and overworked doctor, who patted my hand and told me I worried too much.
After a week in my hometown, my orthopedic trauma surgeon at University of Maryland wanted me shipped back to Baltimore so he could assess my progress. My belongings were packed and I was waiting for medical transport to show when my attending physician came in. He needed to examine me prior to discharge from the rehab unit.
“Hmm,” he said, poking around. “I’m afraid the wound is infected.”
Later that afternoon, when my trauma surgeon looked at my leg and heard about my nursing home debacle, he got angry. “I’m readmitting you. I’m not letting you out of my sight until you’ve had your skin graft, and if your insurance company doesn’t like it they can come talk to me.”
So that’s how I ended up back on the Shock Trauma unit, worse off than when I’d been shipped out ten days before. But, hey, I finally got a wound vacuum and heat lamp, so I had that going for me.
Wednesday, December 4, 2013
It is December 4, 2013, exactly two years from the day I was helicoptered to University of Maryland Shock Trauma, where doctors expected me to die.
Today it is sunny and cool. I had eggs and toast for breakfast, checked my email, played ball with my dog, and now I'm getting ready to do some writing before I have to leave for a doctor’s appointment.
Today, my novella A PARTRIDGE IN THE AU PAIR’S TREE helps launch StoryFront, Amazon Publishing’s new short fiction program. SEA OF LOVE, my first full-length novel since my illness, was released yesterday. A novella in the CHRISTMAS ON MAIN STREET anthology came out a few weeks ago. I am up to my eyebrows in promotion.
Today, I’m in the process of moving to a new house that will be easier for me to manage.
Today, I will drive myself to Baltimore to get steroid shots that will help with pain. I will use my prosthetic leg and two canes to walk from my car, through the lobby, and down the hall to the reception desk of my doctor’s office.
Today, I am blessed with friendship and support.
Today, I am under contract for four more novels.
Yes, the last two years have been filled with intense frustration and grief. But there’s been joy and laughter, too. I guess that means I’m just another member of the human race.
I’ll take it.
I am alive today, December 4, 2013, and I’m grateful.
Saturday, November 30, 2013
I sometimes write trilogies, books connected by characters, setting, and/or backstory. I always encourage readers to start with the first novel in the series and work their way through to the last. Things make more sense if the books are read in order. The funny stuff is funnier. The sad stuff is sadder. The heartrenching stuff is renchier. So for that reason, I politely ask anyone who hasn’t read my previous blog entries to go back and start at the beginning. I promise it won’t take long. They’re short. You’ll be glad you did.
Welcome back. So we’re all caught up, now. I almost died from an unexplained case of flesh-eating bacteria, underwent multiple surgeries including the amputation of my left leg from above the knee, and spent about six weeks the UMM Shock Trauma Unit in a opiated haze of agony, fear, and loneliness.
This is where things take an appallingly unfortunate turn. I wish I were making this up, but I’m not.
It was mid-January. My amputation was slow to heal and my insurance company was getting antsy. Because I had so many complications, UMM believed I needed to remain in Shock Trauma while on their watch. This didn’t make my insurance company happy. As they pointed out, they were paying top-dollar for me to begin physical therapy and lounge around waiting for my wound to heal. I’ll sidestep all the gory details, but here was the issue: the amputation site needed to be adequately drained and healed before I could receive a skin graft, which would be the final stage of surgery. To aid in healing, a wound vacuum was attached to my leg at all times and I received several sessions of heat lamp therapy a day. As the doctors explained, this process could not be rushed. If surgeons attempted a skin graft before the amputation site was ready, it would almost certainly be a disaster. The graft wouldn’t hold and it would lead to more surgery and more hospitalization, which nobody wanted. So my insurance company decided I should be transferred to a facility that could provide sub-acute care at a lower cost. The plan was for me to heal and receive some physical therapy, then go back to University of Maryland for the skin graft. I really wanted to go to my local hospital’s rehab unit, but the insurance company refused, saying I didn’t meet requirements for coverage at that facility. So I was shipped off via ambulance transport to a nursing home in my town, about an hour-and-a-half away from Baltimore.
My loved ones were so excited. I’d be close enough to visit every day. The ever-optimistic Arleen busied herself with gathering up my sports bras and workout shorts to wear to physical therapy. She even bought me some new pajamas, assuming my hospital gown days were over.
Within twenty-four hours, I was once again on death’s door. The nursing home staff had drugged me with four times the amount of painkillers prescribed by my doctors at Maryland Shock Trauma. When Arleen showed up with my workout attire, she found me unresponsive in my bed. The sling used to hold my arm in place after my pacemaker surgery was now wrapped around my neck, choking me. Apparently, this is the moment my usually demure BFF went completely ape shit. Arleen began shouting for help, pulled the sling from my neck, then proceeded to rip the charge nurse a new one, demanding to know how this could have happened.
The nurse pleaded HIPPA – the Health Insurance Portability and Accountability Act designed to protect patients’ privacy – and said she couldn’t discuss my case with her. Arleen’s account of what happened next still makes me smile. I wish I had been conscious because I sure would have liked to have witnessed it.
“HIPPA my ass!” Arleen recalls shouting. “Do you HIPPA know what Susan’s been through? Did you HIPPA hold her hand, wash her hair, and give her a spa treatment in the hospital? Do you HIPPA know Susan hates horseradish and makes brownies when she’s stressed?”
Arleen called my ex-husband, John, who’d already been notified and had instructed the nursing home to call an ambulance. Arleen rode with me in the ambulance and met up with John in the local ER, where I began to be treated for narcotics overdose.
Remember my story about The Screamer down the hall in Shock Trauma? Well, this was my turn.
Whether it was withdrawal, the drug ER doctors gave me to counter the overdose, the catheter a nurse was trying to shove in me, or a combination of all the above, I began screaming bloody murder from behind the ER curtain. Arleen and John had been with me through everything – the amputation, kidney dialysis, dozens of surgeries – and they’d never heard a peep from me. What they heard at that moment brought both of them to tears.
I was wailing like a banshee.
Arleen couldn’t take it anymore. She jumped up and threw the curtain open, stood by my bed, and held my head in her arms. She recalls, “I just told you I was here. That you were going to be ok. That we all loved you and you would make it through this.”
I spent several days in the intensive care unit at my local hospital, slowing coming out of the overdose. During this time, I endured the most sinister nightmares of my life. They were beyond creepy. The dreams featured complicated plots and malevolent inhuman beings, and I would wake up shaking and crying, terrified out of my mind. During this period, I started calling my friend Celeste Bradley. She lives two time zones away and is a night owl by nature, so if it was three A.M. for me, I knew she’d be awake, alert, and probably writing. She talked me off the ledge more than once.
Around this time I started getting collection calls on my cell for care I’d received at the beginning of my health disaster. Yes, that’s correct. I was in the intensive care unit of the very same hospital now calling me about the overdue bill for my ER visit back in December of the previous year. All I could do was laugh. It was just too ridiculous. I told the woman I’d take care of my bills as soon as I was strong enough to hold a pen to write out the check.
At this juncture, I asked myself, “What’s wrong with this picture? What’s wrong with our health care system? WTF is wrong with this country?”
I bounced back from the overdose, and the issue was at hand again – where would I be shipped off to next? I told my doctors and my family that I HAD TO stay at my local hospital. I told them they HAD TO find a way to get me in the rehab unit there, where I could be close to those I loved. I begged everyone from the doctors to the janitorial staff not to send me back to Dr. Kevorkian’s Party Palace.
My insurance company said the only way they would approve that level of care is if I could make several hops forward on an aluminum walker. This seemed impossible, considering I'd just OD'd. I had been plenty weak before the overdose. Now, I felt like a floppy slice of bologna. My good leg was shaky and numb. My arms were wobbly. But I believed I had no choice. My life depended on it. So I did what the insurance company asked. I don’t know how, but I hopped around on the 'effin walker.
As my brother, Sean, observed, “It’s amazing what a girl can do when she’s not loaded up on elephant tranquilizers.”
About a year later, I was doing my regular outpatient physical therapy and learning to walk with my prosthetic leg. A young woman who worked there came up to me with a strange look on her face. She smiled shyly and said, “You don’t remember me, do you?”
This had happened before. I remembered very few of the kind and skilled people who had helped me in some way during my health crisis. I admitted to the young woman that I didn’t recall meeting her.
She told me she had been the freelance physical therapist at that nursing home. She told me that she was instructed to work with me but found me unresponsive. She said she reported to the nurse that I was comatose. The nurse told her to go back in the room and move my leg up and down a few times so they could bill my insurance company for the physical therapy.
I listened to this woman’s story with my mouth hanging open. Then I snapped it shut because, really, was it so hard to believe?
Often during my illness and recovery, I would stop and thank my lucky stars that I had people to advocate for me when I was too weak and overdosed to do so myself. I wondered what happened to people who didn’t have Arleens or Johns or Seans to stick up for them. Now I think I know.