I have started and stopped this post about 19 times in my mind, for two months now. Each day adds another line, another caveat, another yeah but oh and another thing. So much has happened since the last time I opened this “New Post” page, and the more I talk about it to others the sicker I am of the whole thing and thereby presume that you will be too. Except that you don’t know, so I will get over myself and fill you in. Get a beverage, perhaps pop some corn. Ready your bookmark if need be, this is going to take a minute.
The Thursday before Good Friday, April 17th, I made arrangements to pack a bag and stay the weekend at Dylan’s. He lives near a converted hotel in a planned community in which there are spare guest rooms for extended visits. I was to stay in one of these, and did. The weekend was full of activities and community gatherings, way too much food and nonstop things to do. We spent Easter Sunday at my mom’s in the suburbs, and drove home to the city at some point late in the evening. The next morning I woke up and made my way to my bathroom, ran a hot shower, and climbed into the original though painted-over cast iron tub. I leaned towards my toes and stretched, as I did most mornings. Hmm, that’s an odd feeling, my lower back is really tense. Must be the strange new mattress or perhaps I slept wrong. I should do some floor yoga when I get out of the shower, I thought, or at least just lay on my back and let the hardwood pop and settle my bones back into position. So I did. Except when I went to get up again, found that I could not. I was, for all intents and purposes, completely immobile but for my head, torso, and arms. My lower back had spasmed and I was in trouble. I’d been through it only once before, in college, when I somehow threw my pelvis out of alignment by a half inch (yeah, apparently you can do that). The chiropractor snapped me back into shape that day and I was able to function, though I did miss a test as a result. This felt like that, only I was completely alone, knew no one to call for help, couldn’t get to the door, and Dylan was at work.
I eventually somehow got to my phone and then to the couch, where I sat/leaned in the only position that didn’t cause excruciating pain. It was some kind of pretzel contortion involving holding my left leg, leaning over it, then using my right leg as a counter balance. I had nothing with me but Aleve and no cup to drink out of (and I certainly wasn’t about to lean over a sink). I texted Dylan to tell him what had happened and in true white knight fashion, he sent a friend in with some drugs. Unfortunately she also only had Aleve. The bottle said not to take more than six in 24 hours, all of which I took right then and there. Inside of an hour, absolutely nothing had changed. I was panicked and the pain was increasing, then the tears came and didn’t stop. I was hurting more than I ever had before in life, scared, and most of all, my reeling mind reminded me: uninsured. Dylan came home early to see what was going on. He tried to help me get comfortable and began a frantic (and ultimately unsuccessful) search for better drugs. Up to this point, he’d only seen me cry at sad movies and had never seen me in pain but for some annoying cramps that mainly just made me angry and cursing. These were shuddering cries and ceaseless tears. He was helpless, upset, and desperate to fix it (I love men for that, they try so hard to fix).
We made plans to take me to my chiropractor the next day. This involved borrowing a car, getting me into it somehow, 15 minutes down Lake Shore Drive and through Loop traffic to the office, out of the car, and up to the table. A trip that should have taken about 20 minutes door to door took over an hour. I could not stand up straight, I could only walk in a shuffle and needed a cane to do so, and riding in a car caused a ridiculous amount of unforeseen discomfort that neither of us could believe how long the normally short drive was taking (and we’d only conquered one leg of it). The physical therapist and chiropractor met me at the door and helped me onto the adjustment table. My chiropractor, a woman of extreme humor, warmth, and scruples, said she would not dare touch me with a ten foot pole, given my current state but that the physical therapist was the best woman for the job. They did a few maneuvers and pokes, and determined almost without a doubt (or MRI) that I had herniated a disc, somewhere around the L3-L4 region (lower back, just above the tailbone). They iced me down for 15 minutes in a desperate attempt to get the inflammation down, it was the best they could do.
Discs are like jelly donuts sandwiched between the bones of the spine. When herniated, there’s a stress point on the outer wall that kind of weakens so the jelly tries to escape (if that happens, it’s a ruptured disc) thus causing the disc to bulge and press against a nerve. In my case, it’s the sciatic. The sciatic is the biggest nerve in the body and runs from that vertebrae down your leg via under your glutes, hamstring, back of the knee, where it branches off and half runs down the back to the heel and the other around the calf, then across the foot to the big toe. In the best case, sciatica affects the butt and leg. In the worst, the shin, foot, and toes go numb. That was me. Now, my sciatic nerve had been bothering me at least two months prior, a problem I attributed to sitting in bed too much after losing my job, and again after doing a lot of freelance wherein I was constantly sitting on uncomfortable chairs. I figured it would go away, though Advil wasn’t helping up to that point. The doc thought perhaps it had been bulging for a while and either the hot shower or bend down to the hard floor just pushed it past its point. Squish: jelly donut’d.
Because chiropractors can’t prescribe drugs, they suggested I call my GP and get a steroid pack, which is a six day decreasing dose steroid pill pack designed to attack the inflammation the strongest and most intensive way possible. I knew, even though my doctor was only one block east and two blocks north, there was absolutely no way I could get to her. I was in intense pain and just wanted to get home (in hindsight, that was a stupid move because there was nothing to get home to, I couldn’t lie down yet). I went home and called my GP while Dylan tried to find “alternative sources” for painkillers. The doctor called me back at the end of the day and asked me to come in before she prescribed anything. I told her that I absolutely could not move and would be glad to see her once I was mobile, but that at present it was a physical impossibility. Against her better wishes, she called in the steroid script for me but it wasn’t able to be filled until the following day, due to the limited pharmacy hours (again, something I wish I’d have done differently, had I known). In the meantime, Dylan was able to find me three different pain meds. Of them, the only one that even began to touch the pain enough for me to relax, was morphine. Two pills of it, even. Morphine. Think about that for a minute. I hear “morphine” and I think battlefield amputation.
The pain, I feel like I should tell you, wasn’t constant. Nerve pain is bizarre. It’s not muscle, there’s not a place you can press or manipulate to relieve it and you never know what motion will set it off. A sneeze caused a hot poker full of needles to rest on the top of my foot. A slow look over my shoulder sent a machete to my pelvis and butt cheek. It was completely unpredictable and totally debilitating when it attacked. I sobbed in pain, and I had never sobbed in pain before. I had never known pain until then, in all truth. When doctors ask you to rate your pain 1 to 10, until you know 10, you can’t begin to be accurate about it. I now knew 10. I knew 11, actually.
Wednesday morning came and Dylan had to go back to work. He sent a woman named Rebecca to sit with me. Rebecca has an autistic son who is wheelchair bound and has constant needs. She has a healthcare worker during the day, but he requires all hands on deck. I didn’t realize the extent of her sacrifice to me for weeks after she made it, and I am floored every time I think about it. Before Rebecca arrived in my room, I was laying with my body facing away from the door when I heard it open and a woman I didn’t know asked if the room was going to be vacant soon because she thought her guest was staying in it. I made the grave error of turning to look at her to tell her no after which she shut the door. Just then, I realized slowly that I had flexed the rubber band of the nerve against the bulged disc, which caused the most horrific spasm I’d experienced up to that point. I was shaking, sweating, crying, and alone. Rebecca arrived in the middle of it and immediately got down on the floor (we put my mattress on the ground as it has been lofted) and brushed my hair out of my face, “shhhh…oh honey…” the way my mom would have, I like to think. She talked me through it and wiped the sweat away. When the spasm subsided, she took my debit card and went across the street to pick up the steroid pack. Upon her return, she gave me the first steroid and a pain pill. We waited for the next spasm to come and go. It did, I took a drink of water and tried to make small talk (because heaven forbid I just give in to the pain and stop trying to be nice through it). She talked with me, rubbed my shoulder, did Lamaze breathing with me, and told me to go to my happy place. She knelt by my side for the next hour while the drug did nothing and several more spasms racked my exhausted, miserable body. When it was clear the pill didn’t work, she gave me another. I came to find out later that what she administered, were two high-dose Oxycontin. I had never taken them before, I’m not a pill head and never could be, but that day I was a convert. As the second pill rounded third, I began to settle down and get sleepy. I finally passed out for at least two hours and when I woke, Rebecca was quietly talking to her son’s caretaker on the phone. I moved very reluctantly, prepared for the inevitable tidal wave, but it never came. The oxy was still in my system I could tell, but more than that, the steroid was working. I slowly got up to go to the bathroom unassisted, a small victory indeed.
As I sat back down, Rebecca called her husband and asked him to bring her a few things from their room and asked me what flavor Gatorade I wanted. Purple flavor, always. He arrived with items in tow and handed me the Gatorade, which was wonderful. I was thankful that my glasses were off and I couldn’t see his face. I knew my hair was rivaling Young Einstein and I was the epitome of disheveled. Dylan arrived home from work and relieved Rebecca soon after. I thanked her and watched her leave, expecting a halo to spout from her curls as the door closed behind her. It should be noted that I’d met Rebecca only once before, for all of two minutes, two days prior. Dylan knew that she was the best person to sit with me, unflappable and strong in the face of panic and helplessness, and I have little doubt that she barely thought about it when he asked her. I told him that I was so grateful he didn’t have to see me in that state, not for vanity but because of how awful it is to see someone you love suffer. He seemed relieved, and I don’t blame him.
The next day I woke to find a breakfast plate stocked and saran-wrapped, waiting for me. I nibbled slowly at it, and popped a few meds. And so, with even more steroids in my system and a few pain pills to bolster, I was walking. I showered for the first time in four days (though I had to sit down to rest with every new act of that play). By the time Dylan got home from work, I was mobile. We walked up and down the hall a few times to make sure things were still moving and shaking. It didn’t last long, but it was good to be up. By this point, news of my injury had spread and people I’d met only a few days before were sticking their heads in to bring me food, offer me help, checking to see if I was ok. I was struck almost hourly with the keen sense that had this all happened while I was at the apartment I had been living in, I would have been utterly helpless. Three flights up (stairs only), a buzz-in building, and no friends nearby, I in all truth cannot imagine how it would have gone. I still hate to think about it even now, if I’m honest.
I got to see my doctor a few days later, who confirmed the diagnosis and recommended an MRI then prescribed a cocktail of Advil and Tylenol for the pain. I told her that that ship had definitely sailed, was cannonballed, and had sunk, and we were now onto much heavier things. I confessed to taking drugs given to me by others, simply out of necessity. As a doctor, it was her job to look down on that behavior, but given my medical history (which is to say, not one) it was clear I wasn’t a junkie who was drug seeking even though that is most definitely how she treated me, something I could not understand. Especially once she tried to have me do a few simple nerve responses and reflexes, which I failed. She reluctantly recommended Tramadol, a morphine-like drug I’d also been given during the worst of it which did absolutely nothing for me. After she heard that, she agreed to Hydrocodone but only a low dose. I struggled to make her understand the level of pain I was experiencing and eventually told her about the Oxycontin. She said that she in no way was “comfortable” prescribing narcotics. I told her that while I completely appreciate that, if things aren’t working, they aren’t working. Pain is pain and it needs to be managed. Thus began The Great Doctor-Patient Headbutt of 2014. In spite of several what-if questions at the time, she refused to fill further pain meds until I saw a pain specialist. I saw her once in her office and only once, she stopped returning my calls shortly after and eventually communicated with me only though her receptionist. I have since fired her but for anti-inflammatory pill refills.
Let’s forward three weeks after the initial injury. My physical therapist spent all that time trying different things. Traction, taping, various moves and motions, electrical stimulation, massage. Nothing worked, it didn’t even dent, in addition to the pain meds that weren’t working. It was starting to look like surgery was the only option, as I was still walking with a cane and still had to hang on while going up and down stairs, and getting in and out of bed was an operation. I was nearly tripping over my left foot repeatedly as it wasn’t responding to my brain as I tried to lift it high enough to take steps. And in all this, the ever-present chant of, “I’m paying for this out of pocket”. They weren’t sure why it wasn’t working, but one thing was clear: I needed the MRI to find out.
MRI day came and I went to the office which coincidentally shares a hallway with my physical therapist’s so I thought I’d stop in when it was over and tell them how it had gone. I’d never had an MRI before so I wasn’t aware of the set up, but it wasn’t until I walked into the room and saw the hard, flat surface on which I was expected to lie still for 15 minutes that I thought there might be a problem. I asked the tech if I could lie on my stomach because I was positive lying on my back would be impossible. She said no, it had to be the back, but we could stack and arrange pillows until I was comfortable. This proved not to be. We started and stopped the machine twice, set the pillows up and took them away again, but in the end, lying on the disc caused so much pain I had to sit on the platform for several minutes before I could get up and walk to the changing room to put my clothes back on and cancel the whole thing. After doing so, I hugged the wall as I walked with my cane to the PT office. They took one look at me and helped me to the table. I was still pale and sweating from the pain of it, and my pain meds hadn’t kicked in yet. My doctor had me lay down while she brought me water until I was calm. I told her how I had to walk out of the MRI and we were back to square one. She asked why my doctor didn’t prescribe a tranquilizer or sedative for the procedure. I told her I didn’t know to ask and she didn’t offer, besides, she’s “uncomfortable” prescribing narcotics. The doc just looked at me and blinked a few times, then asked what kind of doctor would say that?! I nodded in miserable agreement.
“Let’s try something, this is on the house”, she said, and went to fetch a cart. I thought, “oh not that stupid pulsating massage thing, it’s useless” but what she came in with, was something totally different. It was a laser, she explained, and it’s a relatively new approach but people are excited by the progress. Being in a chiropractor’s office, I was used to a certain amount of voodoo hooey and figured this was more of that. She moved my clothes around and got the disc, pushed a button, and held the wand against my skin. I felt nothing but the plastic and laid there for 15 minutes expressing my sadness and frustration at the whole thing. She moved the wand around to my femoral artery and explained how the laser rebuilds tissue. It takes about 10 times, but the progress for people has been marked. I nodded absently and let her do her thing. I thanked her for her generosity of treatment and took yet another cab home (the CTA was completely out of the question at this point). I set myself up in bed later that day and Googled the laser. Sure enough, evidence was slowly mounting and anecdotal suggested its efficacy was something serious and of note.
The next day, I rose up and walked in a straight line. I didn’t learn on much and could step without my cane. Now, I don’t know what that was because I didn’t believe it would work, but even Dylan when he saw me, made a surprised face. I was mobile. Somehow. I called my doc right away and told her so. She wanted me to come in as soon as possible, as many times in a row as I could. At $50 a pop, she knew that out of pocket was a lot to ask, but that kind of therapy when it works, has to be kept up with regularly. I was in, it had done something when nothing else had, and I’d be a fool to ignore that. I went three more times in 10 days, and by the fourth treatment felt like a whole new person. It was a miracle, and I told everyone who asked me about it. Amazing.
It was now late May and I was seeing some real progress, it was thrilling. I was mostly off pain meds and sleeping regularly. I’d managed to leave the house a few times and even ride my scooter around town. I was finally of a clear mind to make some decisions, one of which was to move into the building at which I’d been staying since my injury. So during the last weekend of May/first week of June, I sold/gave away/threw out about 75% of my possessions and moved into a commune. Yep, you heard me. That’s a topic for another day and believe me, there is a lot to write about, but it was by far the most perfect decision I could have made.
For those who don’t believe in God, skip to the next paragraph now. Ok, are they gone? Good. Yeah, let me just tell you that God was with me through every single millimeter of all of it. Hard to believe when I was in total agony, but it’s true. He made sure I was taken care of and looked after, he showed me true friendship and love from all who were (and weren’t) around me, and the timing in no way could have been at all more perfect. The tiniest blessing I keep thinking about? My period stopped the day before the injury. Ladies, you realize the significance of that, I’m sure. That’s just one of literally dozens.
So here it is, two months after that stupid disc attempted a prison break, and I experienced only one setback thanks to a premature attempt to strengthen my core muscles in the form of a stomach crunch. Doc had to remind me that setbacks are way more normal than they aren’t, and that as long as I rebounded, I’m still doing well. Today we did some minor exercises during which we found that my brain, nerves and muscles of my left leg still aren’t on the same page the way my right leg is, but it’s all SO MUCH better than it was when we first set out to heal me up. And I still don’t have that MRI, at this point it’s just for curiosity more than need. I cancelled my appointment with a neurosurgeon as well. Doc told me today she thinks I’ll make a full recovery eventually, which is huge because Dylan and I have a plan to set out in an RV full time in about a year or so, after we get married. More on that when it’s official. I realize it’s a matter-of-fact way to talk about that, but I’m too old for surprise proposals. We’re pragmatists with a plan (but no, he hasn’t proposed yet).
Yeah, it’s been a pretty big few months around here… so thanks for sticking through this long story and arduous journey that’s not even over yet. Laser treatments can only go for 10-15 times before they start to counter their own effects, and I just had number eight today. What happens after, I’m not sure, but I’m down to only one a week from three. It feels like this has been going on far more than two months, I actually typed “three” at first before I looked at the calendar. Four to eight weeks is the general thought of healing time for disc injuries without any major setbacks, and mine wasn’t major. It’s a very, very slow road and re-injury is a constant threat, but where I am today is unrecognizable from where I was on April 21st. There but for the grace of God, go I.
The lessons I’ve learned are these, just in case heaven forbid it happens to you:
- Listen to your body. If your back or even more importantly, your nerves bug you, SEE A DOCTOR IMMEDIATELY. Especially if there’s a family history of bad backs and nerve pains – I promise it will get worse untreated
- Ask for help and accept it even and especially when you think you don’t need it. Let people bring you food, run your errands, do your laundry, wait for you outside the bathroom door in case you need them, let them see you cry and freak out. Be completely honest with yourself and with everyone who needs to know how you’re doing, there is no healing without total honesty
- Don’t freak out if you’re not insured. Doctors, the ones worth their salt, first and foremost want to see you get better. Be honest about your situation with them too, and get recommendations from people you trust. I will now send everyone I know to my PT and chiro (and I will send no one to my former GP)
- Part two of that: fire people who aren’t helping you heal. That goes for emotional healing as well as physical. The people closest to you should be offering to help you in some way even if they aren’t physically capable of doing it. If they don’t offer or don’t check in, put them a little further back on your go-to shelf, you can’t depend on them when it counts. Sometimes that even means family
- Be grateful for your health when you have it and offer help to those without it. As Count Rugen says, if you don’t have your health, you haven’t got anything (is this a kissing book?)