The holidays are a time to be grateful and joyous for all we have. They are a time to gather and celebrate with family. We feast at Thanksgiving in a tradition that honors our not -to -distant past when people came by the droves to the new land and settled among native americans. At Christmas, we exchange gifts and feast as we celebrate the birth of Jesus. The lights, decorations and festive music all aimed at being celebratory and uplifting are heartwarming. The Thanksgiving to Christmas season, for many, is the best time of year. I loved the holidays. But over time, the joy evaporated. It dissipated in the air like smoke for so many reasons. I know I’m not alone.
I am grateful for what I have. Despite my personal challenges, I know full well my life is better than most. That is the conundrum for me. I have guilt issues. I’m too broken to celebrate and too fortunate to complain. I’m locked in holiday limbo, overwhelmed by all that is swirling around me and our broken planet. I will never be the person that can stroll through the mall with my magical plastic money wand, humming joy to the world as I troll to find gifts for people that have everything and need nothing. It leaves me empty. Bitter, even. The true spirit of the Christmas has been lost. IMHO, Linus’s soliloquy to Charlie Brown in the Peanut’s Christmas special is timeless and poignant honesty. Illness changes how we view the world. All the lights and carols do not compensate for the atrocities being played out across the globe. This holiday has me sinking like the Titanic and the water is bitter cold.
We went away for Thanksgiving. It was a wonderful five-day get away. The festivities were hosted by my brother-in-law and his husband. They own an astoundingly beautiful Inn and invited family for an extended Thanksgiving stay. The Inn sits atop a hill in the quaint coastal town of Boothbay Harbor Maine – hence the name Topside Inn.
The tourists are gone. The year-round residents including lobsterman, inn owners, chefs, shop keepers, artists, builders and trades people go about their non-summer tourism lives. There is clean salt air lightly perfumed with pine trees and skies that display thousands more stars than the suburban light and air polluted skies of NJ. The sun rises early and sets early — as it is ‘downeast’. Visiting the botanical gardens was a highlight. The gardens underwent six months of preparation for a Holiday Light display that would rival anything you would see in Disney World.
In general, the weekend was fabulous, but I remained haunted. I was perpetually nauseated, having tremors and cardiac discomfort and plagued by the fact we were celebrating while our native americans were being shot with rubber bullets and water cannons. I couldn’t reconcile the two in my own head. The balance sheet wasn’t adding up for me.
Upon returning home from fantasy land, the Christmas noose fell about my neck and started to tighten. My mother-in-law was coming on the 18th to stay for two weeks. My brother in law and his husband would be coming through and staying also, but the arrival and departure was unclear. Being chronically ill sucks. Being chronically ill with house guests is maximum suckage. I couldn’t feel physically worse without being actually dead. The last thing I wanted was an audience. Then there was the added torture of how to work my mother into the holiday equation. It was like a feather floated down and landed on me like an anvil.
I finally reached that moment we’ve all experience, but keep tucked away in the dark corners of our infected minds. All the torment of the past four years seemed to come together like a gigantic storm. The walls I had erected around myself to keep back the demons blew out and crumbled. Brick after brick hit my head as the storm raged. Every dark moment and trauma of my past rose to my consciousness. It was like zombies with greedy, filthy hands grabbed me by the ankles and pulled to drag me down into a dark earthen hole. I asked myself, “Why are you clawing and scratching in the dirt to stop from going under? Why are you fighting to stay in this misery? I think it is time to let go of the rope.”
In a full blown state of PSTD, I contemplated texting my husband from my bed at 7:45 pm to tell him to check me in to the local psych ward. Instead, I wandered outside in my tear-soaked bathrobe and sat on the porch for some weed. Afterward, I crawled back up the stairs to resume the fetal position. Finally, I reached out to my on-line support group and was immediately sent encouraging words and virtual hugs from around the world. They calmed me. And just as the medicine was kicking in, I got a serendipitous text message regarding my desire to spend Christmas as the Standing Rock Water Protectors’ Camp.
Why on earth in my condition would I attempt to do such a thing? Why not? They need people to sit around, take up space and risk being arrested. Well gee, Whiz, that is what I do every day. If it helps protect the environment and our oppressed indigenous people, I’m in. My family is sick of me, and I them- with the exception of my daughter. We are very close. But she really doesn’t need me anymore. She is brilliantly mature, level headed and self directing. I need her more than she needs me for sure. And that is not healthy for her. I have to prove to her there is more keeping me alive than just having her. I need to demonstrate to her that I do still want to live so I can try to help make her future better that it looks at this time. Fortunately, the situation at Standing Rock took a turn for the better, as I took a turn for the worse.
The Bubbleheads In NYC
The week following Thanksgiving was rough and I needed to decide whether to attempt to follow through on plans to meet friends in NYC. We made the plan to meet up months ago. Ladies night – December 2nd. The Bubble Head Tour 2016. The Bubbleheads consists of me and three of my best friends from college. We rented a house and lived together for two years. We shared the downstairs of a old victorian with a wrap around front porch. It could have been a charming home, but it was a slum lord cash cow, over crowded and in violation of zoning laws. We learned about zoning after being hauled in court to testify against our land lord. We grew up fast in those years. Four of our guys pals lived in the upstairs. They affectionately claimed we were the four biggest air heads on campus, and the Bubblehead sisterhood was born. The Bubbleheads are my family. We have remained close since we met freshman year. We were bold and big-haired back then. Life was grand. When Reunion Day in NYC arrived there was a voice inside my head saying, “not a good idea”, but I just couldn’t say no. I went anyway.
On December 2nd, my anxiety was off the charts. Hubby drove me to the bus stop – because the park and ride lot is often full. As we stood waiting for the bus, the wind blustered and the tremors commenced. I hate shaking. Since nausea is a constant, I had two of Mimzy’s pooh bags tucked away in the pocket of my coat- just in case of ‘barfage’.
The hour ride into the city was uneventful. When I walked out of the PABT and headed to the streets to find the hotel, it all hit me. The noise. The crowd. The smells. The lightheadedness. The nausea. I knew if I walked the 10 blocks to the hotel I would be wiped out later, so I decided to Uber. There were too many tourists hailing cabs to bother with a Taxi. As I stood on the corner of 41st and 8th I stared at my phone and a minuscule map trying to determine which way I needed to go to find the southwest corner of 41st and 7th – my Uber connection point. My heart was beating erratically. I felt like I wanted to sit down and cry. Instead I took a deep breath, closed my eyes. I visualized the Hudson and East Rivers and how the numbers of the Streets and Avenues progress from West to East and stumbled my way over to meet my ride. The corner was cordoned off by barriers and a work crew was cutting through the cement sidewalk with a saw to fix some piece of broken infrastructure. My ears felt like they were bleeding by the time my ride showed up. Midtown around Time Square was grid lock. The ride to the hotel felt longer than the bus ride in, but when I finally arrived at the hotel, I was beginning to calm down.
The rest of the day and evening unfolded as it always did with the Bubbleheads. There was much joy and laughter. We had dinner and attended a show and a good time was had by all. In the morning, there were big plans. I was beyond the ability to function. My brady/tachy was in full swing and the fatigue from a poor night sleep -significant. At one point my heart rate dropped to 33 BPM. Every time I stood up, I had to hold on to a piece of furniture so I didn’t fall over. I wasn’t right. There was no way I could trek about Manhattan. I gathered my things, kissed friends good bye and Ubered back to catch the bus home. As the day grew to night, there was a notable discomfort building in my lower right pelvic area and around my belly button.
Off to the ER
Sleep eluded me yet again as the pelvic pain remained constant, and worsened. It was Sunday December 4th. I got up and faced the reality. It was time to visit the ER. No one hates the ER more than a chronic lyme sufferer. NO ONE. I dreaded going, but didn’t want my daughter’s 18th Christmas to be tarnished by my death from sepsis caused by a ruptured appendix. Or did I? Part of me thought, perhaps, this is a way out and a blessing in disguise. When I announced my condition to my just-waking husband, I could hear his eyes roll. (Yes, hear.) I felt rotten and realized my health ruined yet another day for him. I’m confident he anticipated I would be sent home from the ER with a diagnosis of “excessive gas” and hypochondria.
It was near 11:00 am when we arrived and with great pleasure I discovered the ER was quiet. In-take was fairly painless – from a mental perspective. When the coordinator asked me to list my medications, I smiled and handed her my shopping bag. I wish I snapped a pic of her face. It is always priceless when medical personnel are hit with our reality. Shortly after than, I was escorted to a room and provided a gown. Following a quick vitals assessment, and a urine sample that indicated i was dehydrate, the nurse hooked me up with an IV and asked me to rate my current level of pain using that charming ‘level 1 smily face to level 10 crying red face’ pain continuum. For me, pain is so common place. “Six”, I replied. She offered me pain meds and I politely declined. It really wasn’t that bad. It was uncomfortable, just like usual. I have some form of level 4-6 pain most days of my life. But that reality generally goes unacknowledged.
Even on slow days, the ER is a total time eraser. It was suddenly 2:30. Hours tick by between vitals and the actual visit with the attending physician. Once again, I had to explain why I take Dapsone, Alinia, Nystatin, Malarone, Plaquanil, Rifampin and Omnicef. Again, a look of bewilderment when I discussed, Babesia, Bartonella, BB, Mycoplasma. When I, for the second time, explained I have SVT, brady/tachy and 2nd degree heart block from the infections, I got a blank stare. I have become so accustomed to the ignorance medical personal have about tick-born infections, I no longer react. After our dialog and my near leap off the bed following a sudden shooting pain (11 on the face chart), she ordered a CT. Once again, I passed on the offer for pain meds. The flare of intense pain was just that – a flare. It came and went like a labor pain.
Next, the nurse brought 2 large styrofoam cups of a mystery beverage that I needed to gulp down. I hate gulping. I’m really much more the sipping type. Unless it is tequila, of course, in which case gulping is a breeze. She instructed me to notify her when I finished. The CT had to be completed 90 minutes after drinking the boozeless cocktail. Since neither of us had eaten anything yet, my husband felt it was the perfect opportunity to escape. There is a cafe right in the hospital so I didn’t mind he wanted to grab a quick bite.
I was smart enough to grab my Beats on the way out the door, so after he left, I tuned into Spotify and assumed the fetal position. In time, the cocktails kicked in and I needed to relieve myself. I looked at the IV configuration noting it was not on a wheelable hangy thingy. I contemplated ringing for a nurse, then thought, “nah”. Instead, I just grabbed the plastic IV bag from off the hanging thingy and carried it with me to the bathroom. I held it in my teeth like a mother dog would carry her pup as I went about my business. I made three more trips like that during the 90 minutes that ticked by as I waited for hubby to return. Two nights of sleeplessness caught up with me. Just as I nodded off to the soothing meditation music a new face flew into the room and said it was time for the CT. Another twenty minutes of shuffling ensued and I was finally being wheeled down to the testing room. Hubby was still MIA.
The CT was painless and fairly quick. I was probably only gone from the ER room for a half hour. They wheeled me back to my holding spot where I would await results. Still no hubby. I felt abandoned as I waited alone. Within a half hour, the doctor returned to announce I would be having surgery. I texted my husband to let him know. I also texted my daughter, who was teaching at the rink only a couple mile away. I didn’t want her to worry, so I made light of it. Deep down I was crumbling inside with a swirling mind of dark thoughts. I wanted to hug her more than I ever had. I wanted to kiss her head and smell her hair while I prayed the surgeon would nick an artery or the anesthesiologist would over dose me. I was secretly hoping this would be my graceful exit from Lyme hell. I wanted to say good-bye.
When my husband returned, he asked if I had been down for my CT. I wrinkled my nose, scrunched my face and snarked back, “Didn’t you see my text?” Evidently he hadn’t, but I couldn’t help asking, what with me being a total bitch and all. When I told him I was having an appendectomy he seemed surprised. With that out of the way, we moved on to his extended lunch absence. As it turned out, he went back home to tend to the love of my life, Mimzy, who was cooped up in her crate for too long. That was an acceptable reason, and I’m sure a welcome excuse for him to escape the ER drama.
After another two hours of laying around in a ball contemplating how bright and alluring the light would look as I cross over, the surgeon came back. He went over my chart and for the third time I had to confirm my medication list. Again, I rattled off the list of infectious diseases I battle daily. “Bartonella?” the surgeon asked. “I’ve never heard of it.” he continued. “Of course you haven’t.” I mumbled to myself. Then came the third re-hash of the cardiac issues. He sat with a mystified look on his face, like I must certainly be making up the fact that my heart functioning is erratic. He had to clarify that I have no history of heart disease. Discussing how heart disease differs from a heart damaged by disease felt like splitting hairs, but I guess he heard what he needed to hear. I signed some papers, and finally got rolled down to the OR. Just prior to final prep for surgery I was asked once again about my medication list. My hubby was sitting by the side of the gurney. I slowly turned away from the OR nurse, looked at my husband, looked back at the nurse and for the fourth time in eight hours, explained my circumstances. Needless to say, there was an edge in my voice. They assured me it was just cross checking for safety reasons. In my mind I was saying, ‘fuck off’. I was so done. My last thought before blacking out was Olivia.
My first thought upon resuming consciousness was, “fuck – I’m still here”. The procedure was quick and uneventful. There was no rupture. I was glad to hear that – since I didn’t die on the table. I would have preferred, rupture, bleed out, die; but I guess it wasn’t my time and I had to quickly re-adapt to the reality of resuming life chronically ill. It was probably 8:30 pm by the time someone wheeled me to my accommodations for the night. I said bye to hubby and another sleepless night transpired.
A lovely cheerful nurse came in to discuss discharge procedures is the morning. I called hubby and asked him to be back by 10:30 to take me home. I can’t say I blame him for not arriving even 5 minutes early. During the wait time I refused no less than three times the offer for pain medicine. Was I uncomfortable? Yes. Was it unbearable? Hardly. After hubby arrived, the nurse once again recommended filling a script for pain medicine. I looked at my husband with a “WTF face” and said. Ok. I instructed hubby to go down to the pharmacy and fill the script the nurse already had in her hand. It became an exercise of ‘shut up and stop asking’ with a touch of, ‘let’s see how this plays out’. I was ready to roll. Although wheel chair service was offered, I declined and left on leg power.
When we got in the car, I pulled out the bottle of oxycoten to inspect. I figured there would be three, maybe five pills. There were 30. 3 zero. For a minor procedure with three very small incisions. I felt my face get hot. “Here is the cause of the drug epidemic.” I said to hubby. Un-freaking-believable. The insult to injury was it cost us .45 cents. Not even a dollar for enough opiate to get me hooked. Meanwhile, I am forced to pay over $300. for two of the prescriptions I need to fight infectious disease. And people wonder why I like Bernie Sanders.
Today’s musical selection brought to you by the Dr.s that push addictive prescriptions.