Don’t worry. The title will make sense by the end of this, if you make it that far. (My darlings are survivors–no apologies.)
October 9, 2019, I woke before sunrise at my usual 5:30 AM, leaned up on an elbow in bed, and took a Synthroid pill stored on the bookshelf behind me. I have an autoimmune disease called Hashimoto’s thyroiditis requiring daily fake thyroid hormones to replace the ones my dumb jerk body no longer makes.
This was a movement I made every morning around the same time – nothing unusual. Slight upper back twist, plus I was going to the gym to treadmill and strength train multiple times weekly, as well as doing regular yoga. It should have been fine.
It was not fine.
I felt a sudden twinge of pain between my shoulder blades that grew rapidly stronger. Ouch. Not “I pulled a muscle!” ouch, but instead “Fuck, did someone just knife me in the back?” ouch. I froze, immediately flipped onto my back to assess, but it kept getting worse. I moved to the left side. Ouch, ouch, ouch. I got onto the right side. Zinging, radiating, pain. I couldn’t determine which muscle or bone was to blame. Lying very still didn’t help at all. Holy mother of cats, it hurt so much. I froze in place, trying to think logically about what to do.
Background: I first assumed back injury because 9 years earlier, I was hit by a distracted driver while waiting for a red light to turn green. He was doing 50 MPH and didn’t brake at all. He totaled his Ford Taurus and my Toyota 4Runner, violently slamming me into the car in front of mine. I spent 2 weeks in bed on painkillers, speaking in a hoarse whisper because the whiplash was so severe my neck and vocal cords were swollen, only getting up to roll sideways out of bed for crawl-walks to the restroom. This was followed by 2 months living/sleeping with my damaged right foot tendon (injured instinctively jammed down on the brake) in an Aircast® boot, and then 2 more months of physical therapy to get my foot working again after the boot was removed.
Short version: I assumed I’d tweaked my neck. Also, please don’t drive while distracted.
The pain was growing stronger by the minute, and emanating from what seemed to be the middle of my upper back into my neck, head, and jaw area. I began to sweat from the intensity. It was hot, sharp, moving upward, and my extremities had begun to tingle, arms and legs growing peripherally numb. I sat up in bed, stood, and almost passed out.
More background: I’ve had a C-section abdominal surgery (7 inch scar, stitches) after a 35 hour labor with my gigantic son, 24 hours of it active and without pain control of any kind, and a few years later, a hysterectomy/left oophorectomy abdominal surgery (5 inch scar, staples). I’ve had shingles on my face, forehead, and scalp for weeks (undiagnosed anxiety disorder). I’ve been been violently punched and beaten by two different men (broken finger, broken front tooth, damaged optic nerves, C-PTSD/panic disorder).
With that in mind, this pain was worse than anything, ever. I am known for my high pain tolerance (natural redhead – we’re weird about pain). An Urgent Care physician once commented, “Why aren’t you crying? If I had a break like yours, I’d be crying, for sure!” The bone had been broken for over 4 hours.
I share this “window into my tolerance for pain” not to sound tough, but to explain how incredibly explosive and horrific this moment was… I’ve literally never felt anything like it.
I ran to the bathroom with sweat trickling down my ribs, to empty my bowels in the way only pure adrenaline can. I mention this because 1) I have IBS-C, and the “C” stands for constipation, so this was not in any way normal for me, and because, 2) This complete elimination would be helpful later. (Please enjoy my fecal foreshadowing. You’re welcome.)
I began to involuntarily shake, which I would soon learn in the hospital, is my natural reaction to pain at 10+ on the Wong-Baker Faces Pain Scale. (Oooh… the hospital is coming. More foreshadowing. So exciting.)
I ran for the ibuprofen (<—this blood thinner was a bad idea… will the foreshadowing ever end?) in full primal panic, took 3 gel-caps, grabbed an ice pack out of the freezer, and placed it on my neck. The pain was making it hard to breathe–far worse than the peak of a labor contraction–and I finally accepted more was going on than a pulled neck muscle. My entire upper back/thoracic region was now on fire, and it was becoming harder to walk because of the tingling and numbness in my legs.
In searing pain, now teeth-chattering, barely able to speak, I sat down alone on the living room couch in the dark, leaning back onto the ice pack because my arms were too weak to hold it up, and tried to once again assess the situation. I began to wonder if I was having a heart attack because of the jaw involvement and nausea/diarrhea. I’ve read that heart attacks can present in these ways for women. This medical show junkie was completely flummoxed, and in too much pain to think clearly. But I had to stay clear. Panic helps nothing. Assess, stay calm, assess, stay calm, panic will make it worse, stay calm, deep breathing, stay calm, assess. What is my next move? Do. Not. Panic. But the pain was making it so fucking hard to stay calm.
Oh, crap. She’s giving us more background: I am diagnosed with C-PTSD, which often helps me stay cool under pressure, and able to lose my shit later when I’m in a safe place. I believe this evolved as a coping mechanism to keep myself alive in violent and threatening situations. I can compartmentalize and dissociate like a rock star if needed – but the panic attack will have its way with me eventually. The body keeps the score, and all that. So I was now sitting quietly in the dark, wondering what I should do next. Sweat now literally running down my sides, stomach mercifully cleared of all contents, thinking about my son sleeping on the other side of the wall growing up without his mother. Good times, good times.
I should probably mention at this point that my husband, who is normally one of those people I envy who can sleep much later than 6 AM, happened to be awake while I ran frantically around the house groaning, because he’d had hernia surgery for 2 lower abdominal hernias 2 days earlier. He was in the early phase of his week off work for healing where the convalescent eats soup, takes pain meds, and sleeps odd hours. I had spent the day before taking care of him, made a trip to the grocery store to buy foods he could eat, and he was in no shape for a crisis. Poor bastard.
He called blearily from the bedroom, “What’s going on?”
I replied, “I don’t know yet… maybe a spine issue? Pulled muscle?”
Bent over in abdominal pain, he lurched out to the living room where I was leaning limply against the couch. We were quite a pair. (Watch the middle-aged people moaning in agony around the room, kids! Enjoy a glimpse into your future!) I could no longer lift my arms or legs–not even a finger or toe twitch–and they felt heavy, like they were metal and the floor was magnetic. I was for all intents and purposes quadriplegic, and I wondered how much longer I’d be able to breathe on my own or stay conscious if the paralysis moved further up my body. I knew if I succumbed to the panic attack, it would make everything worse, so I left my body a bit. I tried to stay calm by watching the situation from the outside, but the pain kept pulling me back into my body. Stupid pain.
He asked if he should call 9-1-1 and I said yep, I think paralysis of my arms and legs combined with the worst pain I’ve ever felt probably warrants that call. Fucking surreal moment. Also, as he was on pain meds, post-surgery, and not cleared to drive, there’s no way he could have gotten my newly-immobile human meat sack to the hospital. We needed help.
The 9-1-1 operator had him try to check my wrist pulse, which I can never feel, so I told him find my Adam’s apple and move up and to the side like I’ve learned in CPR classes, but then I think he and the 9-1-1 operator decided if I could help him find my pulse I probably had one and they stopped that part. She gave him the excellent advice to lock up any pets (2 indoor-only cats) and to turn on the porch light for the ambulance. He was then tasked with waking up our 13-year-old son, which is the part that makes my eyes water as I type this, because I’m a parent, and we want to protect our kids, not scare them.
I had been answering my husband’s questions in short bursts through my pain-clenched jaw, and now that my son was awake, I had to put on the strong mom mask. It has never been harder. I remember saying things like, “It’s probably just a slipped disc in my back, buddy. It hurts a lot, but I’m okay, don’t worry, the ambulance is on the way and they’re gonna fix me up,” and a bunch of other happy horseshit I didn’t believe. I honestly wondered if I’d ever see my child again.
We heard sirens and I was so relieved. The sirens stopped once they got into our neighborhood, which I later learned they do to avoid waking everybody up, which makes sense. At the time, however, I worried they’d driven past our neighborhood entrance.
We had our son grab my stuff, and open the door to wave down the ambulance. I will never forget the look on his young face as he stood by the front door, holding my purse to his chest while the EMTs rushed in, followed by the firefighters. He looked pale, and so, so scared. I hate that my stupid, weak body gave him that awful memory. I couldn’t protect him. I’m supposed to protect him. Damn it.
After asking the appropriate questions, the EMTs confirmed I needed to go to the hospital.
“Can you walk to the gurney?” they asked.
I tried to move my legs, and was horrified to find they were still completely paralyzed. I couldn’t even wiggle my toes. I then tried my arms. I couldn’t lift them or move my fingers. I tried so hard to do these simple things I’ve taken for granted my entire life, and no matter how hard I focused my brain, nothing moved. Lift an arm or leg as you read this. Go ahead, do it. Now imagine willing those limbs to move and nothing happening. No, not like when your arm falls asleep and you can flop it around tingling until the feeling comes back–I mean no movement at all, no matter how hard you try, you’re trapped inside your body. Like being held down by an invisible force, and completely helpless. That nightmare you have where the monster’s coming for you but you can’t move at all. That feeling.
(My biggest fear in life is being helpless, by the way. I was so far beyond horrified I can’t even describe it adequately with words. Just know that sometimes, still, at the end of a day when my back hurts badly in the affected area, I get scared enough that it’s happening again to shake and cry. I don’t want to go back to that helpless place ever again.)
I told them I couldn’t move, and the firefighters came in to help the EMTs lift all 5’9″-ish-and-not-underweight of me onto the wheeled stretcher. Yeah, not my best look. I was in a flimsy nightgown, too, with no underwear, which is just awesome. They came towards me with a small towel to support my neck. Terrified the tiny blanket would wiggle and make whatever was going on worse, I said, “Shouldn’t we put on a collar to support my spine?” The firefighter gave me an annoyed look, said, “Yeah, I guess,” and got a cervical collar. They put it on, and I was then 1-2-3 lifted onto the gurney like the dead weight I was, bless those strong men and women.
So here’s the thing about that collar, in case you’re ever in a similar situation. What we’d later learn was that what happened to me was so rare (without trauma) that there’s no way they could have known I definitely needed it, but the neurosurgeon with whom I’d soon become acquainted told me if I hadn’t gotten that C collar, I might have been permanently paralyzed. So trust your gut, kids. (And any awesome first responders reading this, please don’t dismiss annoying medical show fans, because we learn things sometimes while we watch TV and wish we’d pursued a nursing degree instead of a double major in English and psychology. Ahem.)
On the way out the door, I told my son I loved him more than everything, and not to worry. I still can’t think about his face in that moment. Stricken is the only word that comes to mind. Some combination of mortified, horrified, and bewildered that defies language. I never want to see that look on his face again. My husband called our next door neighbor, who happens to be a lifelong friend of his, because he couldn’t drive himself behind the ambulance (recent hernia surgery… again, poor bastard). Our friend drove them both to the hospital where they languished in the waiting room. My husband had his parents come pick up our son and he took the day off school because he was understandably freaked out. They took such good care of him, for which I will be eternally grateful.
I’ll never forget the bumpy, shitty roads of our state on the ambulance ride to the hospital because the pain blossomed like redneck fireworks as we hit every one of them. The sweet EMT woman put in an IV, attached electrodes, did something (I had my eyes squeezed shut because the ambulance lights were so bright) and said, “Well the good news is that you’re not having a heart attack!” and I felt a bit of relief. She noticed my eyes and asked if I’d like the lights off. I told her I’d love that and thank you (bright lights give me migraines). Eyes now open, I looked out the back ambulance windows at the city lights in the dark, moaning in pain with every bump, praying we’d get to the hospital quickly, because I’ve learned from 2 previous major abdominal surgeries hospitals have wonderful stuff that makes pain bearable.
When we got there, they loaded me into a dark bay where I could see a well-lit hospital hallway and people walking by casually, talking and laughing in scrubs. Concrete floors and barren white walls surrounded me. That’s it. No lights, no machines, no clock, no people–just me alone in the blank, shadowy loading area. It felt like a storage room in the back, like the bright hallway with the people were a doorway-shaped television set I could watch, but not access. The nice EMT lady wished me luck and left after giving my details to someone.
The intake nurse in the bay told me all the Acute Care rooms were full because there’d been a sudden weather change (it was Wednesday… not usually a busy day, she said) from warm to cold overnight. I knew this phenomenon always deflated my car’s tires, but didn’t know it was a thing that so dramatically affected people, too, before that morning.
Then she left me. For a long time. I tried to be patient (pun alert!) but I had been in the worst pain of my life for going on 2 hours at this point, and the lifting, jostling, and bumpy ride hadn’t helped. I. Wanted. Fucking. Pain control. And I wanted it NOW. It was growing harder and harder to choke down the panic attack. I felt vulnerable and helpless. I felt scared. I felt forgotten. I still couldn’t move my arms or legs. I thought I was going to die. Alone. In the dark.
Soaked with sweat and terrified, I started to shiver so violently (in the chest/torso area) I looked like I was convulsing, and a nurse checked in on me. Nurses know the signs of a person in severe pain, and she deemed me worthy of Percocet, the only pain medication my body will tolerate in pill form. It dulled everything down to maybe a 7 or 8, but I was bewildered by the lack of care. Nobody seemed concerned about me. I still wonder if I’d had the panic attack I was desperately holding in and started hyperventilating and wailing like I usually do in the master closet of our home, if they might have bumped me up the priority wheel. Screaming wheel gets the grease, right?
I later talked to my husband because I assumed it was one of those “felt like forever but was really only a few minutes” kind of things, but he assures me I was lying alone in the dark, empty bay-room, wondering if I was ever going to walk again because there was no sense of urgency–and why nobody was concerned that I was PARALYZED–for around 45 minutes. I’m completely serious when I say I could have coded and I don’t think anyone would have noticed.
Sad background: I remember in that moment I wanted my daddy, like a little kid. Except I didn’t get a loving biological dad, so I wanted the father I never had. I wanted a daddy, like a little kid, I guess. I wanted a guardian. I felt helpless and vulnerable and I wanted protection. I thought about how when my husband herniated a neck disc, his father drove him to the hospital and fought them to give him pain control–he angrily made them take care of him, the way a parent is supposed to advocate for their child. I remember wanting my husband’s father there because I knew he would make them come help me–he would angrily demand someone help me like he did for my husband, his son. I get frustrated with my father-in-law sometimes for needing to manage and control situations that maybe aren’t his jurisdiction–but when you’re in the shit and you need help, he’s exactly the kind of person you want on your side. I suddenly appreciated him so much more. I still do.
So yeah. I wanted that. I always feel alone. I’ve always been alone. But I’ve never felt more alone than in that moment. If I die here, I’ll die alone, I remember thinking, and my people won’t even know that these people ignored me instead of helping.
Meanwhile, my husband had been in the waiting room harassing the guard every 10 minutes to check and see if I was in Acute Care yet, asking could he please go be with me, feeling as confused as I was by the lack of urgency. It was really weird. I think, once again, the rarity of what was happening inside my body factored into the nonchalance of the medical professionals. They had no idea that time was of the essence, and that I am freakishly lucky to not be paralyzed to this day, according to my neurologist and every study I’ve read. I think they thought I’d pulled a muscle and was overreacting, having a panic attack. Mostly, I think if I’d been a man, they might have taken me seriously. And that’s why I’m sharing this publicly. Because I’m hoping the next person who has a non-trauma-based, rare spinal injury like mine will be taken seriously from the start, regardless of gender.
(Yes, I went there. I’m playing the sexism card. Bam! It’s on the table, bitches. If you’ve never been given what I call The Little Lady Treatment by a condescending doctor with a God complex, as in, “Now, now… don’t worry your pretty head, little lady. No need to get hysterical. I know your body better than you do, and there’s nothing to worry about,” only to find out later from a doctor who listens that there sure as hell WAS something to worry about… you’re either lucky or male. Women are strong as hell. If we say we’re in pain, fucking BELIEVE US. We can silently, quietly take a lot of that shit. End rant.)
Possibly because my husband was harassing the front desk about me so much, they rolled my bed from the dark room out into the bright hallway to wait for an Acute Care room to open up, and finally let him come stand next to my wheeled stretcher. My husband tells me we then waited at least 30 more minutes for a room to open up. The Percocet had dulled the pain a little, but my husband remembers that I was still shivering. The medication that had seen me through two major abdominal surgeries, a broken bone, and shingles wasn’t touching this pain.
A room finally cleared and they wheeled me into a room with glass doors that slid open and shut, with a privacy curtain if needed. There was a brushed nickel toilet in the corner that made me think of prison. They hooked up hydrating solution to the IV the ambulance EMT had placed in the crook of my right arm. (Yay! Breakfast!) The pain had dulled somewhat, but was still in the 8+ range, and the incredible Acute Care nurse, Delores, believed me and added morphine to my pain control, which helped so much. It calmed me down and pulled me out of the panicked animal phase of whatever was going on so I could stop shaking and answer questions.
My arms and legs had regained a little bit of feeling, but whenever a nurse or doctor did the “squeeze my fingers with your hands, now push my hands with your feet” test, I could barely lift my arms a few inches and they said I was extremely weak. I was in shock, thinking about how I’d been pushing 180 pounds on the leg press machine at my gym a few days before, and now I could barely make my feet move forward into the open hands of medical professionals. I’d been treadmilling a few miles and lifting weights 4-5 days a week for years… and now I couldn’t walk. It was unfathomable.
I saw multiple doctors and had to re-tell the above story of my morning events to them all. They were busy and kept apologizing for how long it was taking to diagnose me, but said they had more pressing patients and kept leaving. Delores was an angel and kept my pain under control, and was so kind. I started to need to pee, but found that I couldn’t, either in a bed pan or when helped to weakly walk over to the prison toilet in the corner by Delores and her nurse trainee holding me up. This was both my and my husband’s first clue that something very, very wrong was going on with my spine, because if there’s one thing this girl can always do, it’s pee. I can pee, and then 5 minutes later, before we leave to go somewhere, I can pee again. My son rolls his eyes when we get to doctor appointments because mom always has to use the restroom before we go in. It’s a whole thing, how wimpy my bladder is, and now I couldn’t pee, even though my stomach and kidneys hurt. I now understand this is a symptom of spinal cord compression-related paralysis blocking the muscles needed to release the bladder, but I didn’t know that yet. It really scared us, because I’m normally the Pee Champion and all that.
Finally a doctor ordered 4 MRIs with and without contrast, of my thoracic and cervical spine/neck regions. Delores did a bladder sonogram, determined my bladder was indeed full, and put a pee pad under me in case I lost control during the MRI. Someone came and wheeled me off to the MRI while my poor exhausted husband waited in my Acute Care room, off the pain meds he needed for his hernia surgery, hurting and not resting like he should have been. My stupid injury set back his healing process dramatically, and I still feel guilty, even though I obviously didn’t mean to do this. But I’m not alive if I’m not feeling guilty, so, you know. It’s fun in here.
The MRIs took what felt like forever (do… not… like… clanging bright claustrophobic metal tube time… at all) and I was having a muscle spasm during the first one, for which the frustrated disembodied female voice inside my tube kept chastising me, as in, “You need to stop moving your neck. I don’t know why you keep wiggling your neck.” I told her I was having an involuntary muscle spasm starting between my shoulder blades on the left side, shooting up into my neck, I was sorry, and that I was trying to hold my breath to see if that would help. She never spoke to me or answered and it was making me panic, feeling like I was ruining the MRI, making it last forever. Would I ever escape the loud tube of doom?
Then, a kinder disembodied male voice inside my tube spoke up and said, “I’ll be taking over your MRI now,” and proceeded to guide me through it, telling me what to expect and for how long. It was like night and day, the difference between the two MRI techs, and I kept thanking him for telling me what was going on, and that it was helping me so much to know what to expect. My muscle even stopped twitching.
(Any MRI technicians reading this: I was anxious because fear of the unknown is scary for some people, especially those of us with trauma in our backgrounds and major trust issues. As soon as the nice guy started talking me through the MRI, my stress levels decreased dramatically. Please don’t shove us in the clanging bright claustrophobic metal tube, criticize us, and leave us alone with our thoughts because some of us catastrophize and need reassurance. Trauma Informed Care is the future of medicine. Learn it, please. Thank you. Love you.)
I got out of the MRI tube and the nice tech and a nurse helped me weakly wobble back into my rolling bed, which we later learned I shouldn’t have done. But there’s a saying in medicine: “When you hear hoofbeats behind you, don’t expect to see a zebra”. We still thought my pain was a horse, because usually the hoofbeats are coming from a common bay mare. Unfortunately for me, we would soon learn from the MRIs we were dealing with a zebra. And it was a rainbow striped zebra, like the Fruit Stripe gum zebra, except my ordeal would not be anywhere near as fleeting as that ancient gum’s flavor.
I was wheeled back to the Acute Care room where my husband sat mired in post-surgical abdominal pain, and we waited for the results. A doctor came in to talk with us about them, sitting next to me, typing information into a computer. I did the hand-squeezy/foot-pushy tests for the umpteenth time that day, and he informed me there was bleeding inside of my spine, anterior (front of spine, not back) left, from the C/2 or C/3 neck (cervical) area and extending all the way down past the T/5 (thoracic) region. It seemed to be coming from what might be a tumor, lesion, or abscess around the T2 vertebrae, which could be cancer, and infection, or something else. No. Please no. My husband asked if this meant medication and physical therapy or what, and the doctor scared the daylights out of us both by grimly snapping, “Oh, no. Make no mistake… this is very serious. She’s going to need emergency surgery today.” Oh no. No, no, no. He told us the neurosurgeon would be in to talk to us soon, and left. OH MY GOD, NO. My husband asked, “Are you scared?” and I quietly replied “Yes,” but I was scream-thinking, “YES! Shitless! I am scared shitless!” I didn’t want to scare him further, so I kept that reply to myself.
What had happened is officially called a Spontaneous Spinal Epidural Hematoma, or SSEH. They’re so rare (0.1 in 100,000 per year) that I couldn’t find much research on them, which is why I’m writing this. I’m hoping that by telling my story, I might help anyone (medical professional or patient) recognize what’s going on more quickly if they recognize similar symptoms, because according to everything I’ve read, I shouldn’t be able to walk or use my legs today (i.e. acute neurological deficits), as my spine was compressed for just over 12 hours. The bleeding was towards the left, causing greater weakness on the left side, so if my issue had been mistaken for a stroke, and anticoagulants given, for example, it would have possibly caused more blood to enter my spine.
The extent of neurological recovery has been shown to be related to the interval between the onset of symptoms and surgery and also the degree of neurological deficit. It took the hospital, from loading me into the ambulance bay at 6 am-ish until emergency surgery at 5:30 pm-ish to diagnose this, which means I’m incredibly lucky to be able to type this right now. Or walk. Or pee on my own again. 50% of patients do not recover.
Above, I’m hyperlinking some of the fun information my husband found on the internet while I was having spine surgery and he was wondering if he’d be raising our son alone, or perhaps also taking care of his quadriplegic or paraplegic wife, what kinds of ramps/door-widening we’d need in the house for my wheelchair–if I got lucky and survived. All while in pain from not taking that day’s post-hernia surgery meds or lying down to rest. (Ugh. Guilt guilt guilt.)
My husband later told me he was paranoid the whole time they diagnosed my injury because as mentioned above, it happens literally once in a million without trauma, he’s 6’5″, and they always blame the husband. It didn’t even occur to me the whole time, but I had no signs of outer trauma on my back at all, so I don’t think this was never really in question. We both wonder if that was possibly why the doctor was so abrupt and snappy with him. He had an angry glare on his face while he told us I’d need surgery. Maybe it was just the end of his shift and he was tired or something, but he scared the fuck out of us both.
Delores, the best nurse ever in the history of nurses, had been by my side all day, and was about to give me a temporary in-n-out catheter to empty my bladder because her portable sonogram said it was really full (of IV fluids… I’d had nothing to eat or drink all day and it was now late afternoon). She told me we didn’t want my bladder to burst because that was very bad. But as soon as she heard I was going to need surgery, she told me she’d stay late so she could be the one to put in my Foley catheter (the kind that stays in, not the intermittent catheter). She told me less catheters means less chance of a UTI, so we might as well just place the Foley now. She was at the end of a 12 hour shift, AND she’d picked up an extra day that week, yet she still offered to stay late to put in my Foley catheter. I love her so much. If anyone reading this knows Delores at St. Francis, tell her she is an angel straight from heaven and I will be sending her positive energy and goodness for the rest of my life. Seriously. Somebody make me a millionaire so I can buy her a car or something, please.
The neurosurgeon and his assistant came into the room next, right as Delores was getting ready to cath me, and that queen stepped aside to wait, again, proving that nurses are amazing humans. She stood aside while the nice neurosurgeon with kind eyes and a calm manner talked to me about how he was going to have to open my spine and suck the blood out to decompress it, a laminectomy. He said they’d check the evacuated blood for cancer cells and infection while I was on the table, and go from there. His assistant was also kind, and I felt in very good hands. Fortunately, I hadn’t eaten anything since 5 pm the night before, so that wasn’t a conflict.
They left and a phlebotomist came in to put an IV in the crook of my other arm. I have tiny veins and the EMT already placed an IV into my right arm (the one good vein), but Blake must be the phlebotomist they call for tough cases, because he got a smaller needle into my left arm vein. (The Blood Whisperer, I call them. Every office has one, and they usually call them out to help after lesser phlebotomists have poked my hand veins to the point of massive walnut-sized swellings.)
Delores finally had the chance to put in the Foley catheter, and I immediately filled the bag. My stomach and kidneys stopped hurting. Oh, the relief… the bizarre relief of not being able to release your pee muscles until someone inserts a tube up your urethra, into your bladder, and then opens a balloon to hold it in place. It sounds awful, right? Except hold your pee all day long even though you’ve tried repeatedly to release it, until your lower abdomen hurts, and you’ll welcome that catheter tube, I promise you. Heaven.
Anxiety disorder background/Trauma Informed Care rant: In addition to my morning thyroid replacement pill for Hashimoto’s thyroiditis, I take an anti-anxiety med 3 times daily to prevent Complex PTSD/anxiety disorder-related panic attacks. This is on record, and I’ve been on this prescription for years, under the treatment of a very good psychiatrist. I’ve tried to wean off this medication, for which my doctor has yelled at me because it can cause seizures to suddenly stop taking it, and because he says my brain chemistry is what it is–the neural pathways were formed as such–and I will need this medication for the rest of my life. (I don’t like taking medications. I’m sorry, doctor. I won’t do it again.) When I foolishly tried to wean off the meds, I noticed my hands and feet were tingling all day, looked it up, and sure enough, this was a symptom of weaning off my anti-anxiety meds. I took one and it stopped. Oh. Duh.
With this in mind, because most medical people don’t seem to understand Complex PTSD, generalized anxiety and panic disorder, which are two of my official diagnoses, the doctors typing my medical history into the computer kept recording my anti-anxiety medication as “1 daily, for sleep” rather than “taken 3 times a day” LIKE I REPEATEDLY TOLD THEM. Maybe because “for sleep” is a more typical dose? I don’t know, but I got all-caps shouty back there because this was immediately a source of frustration because I shouldn’t have to relive my multiple lifelong traumas explaining why I need doctor-prescribed meds to complete strangers because it’s triggering and none of their fucking business – and in this instance would continue to be really irritating for my entire week-long stay at the hospital.
I write “immediately a source of frustration,” because when various people coming in and out of an Acute Care room keep having you squeeze their fingers and push their hands with your feet, they also ask if you have any tingling and run pens along your toes and poke them and such. And I kept saying, “Yes, my hands and feet are numb and tingling, but I normally would have taken 2 anti-anxiety pills by now and when I go off them suddenly, my hands and feet get numb and tingle, so it could be that.” My logic being, let me take the damned anti-anxiety pills because 1) I can’t tell you exactly why my extremities are tingly if I don’t take my usually scheduled pills, and, 2) I’M FUCKING ANXIOUS AS FUCK BECAUSE I’M SUDDENLY PARALYZED AND IN PAIN AND I REALLY FUCKING NEED THEM. It was taking everything inside me not to have a panic attack for almost 12 hours straight, and nobody would give me the pills I’ve taken for years to stop the panic attacks. Before the meds, I had worked up to 2-4 panic attacks weekly and become agoraphobic because they’re humiliating. The anti-anxiety meds literally gave me back my life. I need them. (Sorry Big Pharma conspiracists. Rubbing coconut oil and turmeric on my asshole while sniffing essential oils wasn’t going to fix me. Western medicine and science for the win. Deal with it.)
So there was that. I had my anti-anxiety meds on me, but I was worried about surgical/anesthesia contraindications, so I didn’t take one all day. It didn’t help. I’ve had positive reactions to morphine after my other 2 major surgeries (good pain control, no itching), so I think that drug filled in a bit of the anxiety control for my missing daily pills. But still. The cause of the tingling was inconclusive.
Once the 2 inner arm IVs and Foley catheter were in, I figured we’d be waiting all night to be worked into the neurosurgeon’s schedule, but I think once he realized how long I’d been sitting in the hospital with a compressed spine, with my chances of not having neurological/motor deficits waning by the minute, he bumped me to the front of his surgeries because suddenly the orderlies were there to wheel me away. My husband and I were shocked by how fast everything started moving after the neurosurgeon spoke with us. I guess that’s why they call it emergency surgery.
It’s really important for me to be an organ donor–I’ve felt strongly about it since high school–and for the rest of me to be donated for medical research/students for learning purposes. If I hadn’t been so freaked out, I would have reminded my husband of these things, in addition to telling him I love him, but that’s all we had time to say and then they rolled me off to the giant white operating room.
We were met by 2 anesthesiologists who were super nice, and I told them how I grew up with bright red hair, even though it’s fading, and before I could mention how redheads handle anesthesia differently (I’ve woken up during surgery – we’re hard to keep down), the blonde one said, “So you need extra anesthesia,” and I was relieved she obviously knew her stuff.
She took off my nightgown so they wouldn’t have to cut it, which meant she had to lift each of my paralyzed arms for me, and this was such a touching moment for me, even though I felt like a weak child. I asked the anesthesiologists if they wanted me to count and they laughed, saying they didn’t make people count, and to just breathe. The mask went over my face. I stared at the bright lights, wondering if I was seeing my last glimpse of this world. I told myself to be brave, and I breathed.
(To be continued, next blog, with pictures…)