Looking back, the last several months make a whole lot more sense… You know those movies you see sometimes where a bunch of random things happen throughout, you get extremely annoyed because nothing really makes sense, and then in the last few minutes a few realizations come through, and suddenly the entire movie makes sense in hindsight? Well, that’s how the final three of the last several months has ended up for me. Unfortunately, it required me to go through a ridiculous number of months of pain, misdirection, frustration, countless trips to the doctor, hospitals, etc, culminating in a comedy of errors, which, really, could and should have been avoided, let’s just say.
For a bit of longer term history on me, I’m a bit of a workaholic. I like to work. I’m an overachiever. Anyone who knows me professionally can attest to this. I make no apologies for this fact. It’s not that I’m a schmuck on the clock or anything, I just like what I do on the clock, I’m passionate about it, and it keeps me going day to day! So, in May of 2012, on a random day, when my back locked up and I was in a great deal of pain and I decided to go to Urgent Care for it and the doctor said, “hey, you’re sitting in front of a computer too much,” gave me some stretching exercises, told me to stretch, get up some, blah blah blah, it made sense, and I actually did it. For months and months, I actually did just that, trying to make sure I kept limber while I was working long hours (50-60 hours per week just at my day job, and let’s not go into the “other” stuff). As a note, when we went to Urgent Care, Amanda did ask a very important question of the doctor as a possible alternative to muscle spasms, and was quickly ignored… I won’t throw a spoiler in this early, but we’ll get back to it…
Unfortunately, as time passed, these back problems, which Urgent Care described as back spasms, came back more and more frequently. They came and went every four to six weeks, would come for one to two days, lock up my lower back, right side, flank region, and eventually let go, usually if I just rested well for an evening. My wife, Amanda, and I noticed, however, that it was fairly arbitrary… It wasn’t necessarily work. It wasn’t necessarily posture… I could be sitting on the couch, driving, sitting in a chair, at my desk working, etc…
Time passed, and with the frequency increase came the promise of, “oh, we’ll set up an appointment with the doctor,” which would get delayed by this or that, but it was coming, I promised myself. Unfortunately, it kept getting delayed… You’d be surprised how quickly a year can pass when pain heavily only once every four to six weeks and how you can get used to the nuisance of constant pain and the comings and goings of these flares. Oh, the hindsight, I say… You don’t realize as you go along that you’re tolerating greater and greater amounts of pain, that the pain never truly goes away, but you get used to it, move on, and the next flare just heaps on a greater deal, etc… Alas, I cannot turn back the clock to 2012…
In May of 2013, everything changed and set off the true roller coaster ride, but, again, the ride was just getting started, and we had no clue how much of a wild one it would be, nor that it would lead to a true Season in the Abyss.
Amanda and I were up at a Roddenberry screening of Star Trek 2: Into Darkness we were invited to at Paramount in Hollywood, and about two-thirds of the way into the movie, my back locked up. I’m talking locked up like the hand the Grim Reaper grasping my lower right rib cage and holding on for dear life. I’m a stubborn bastard, though. We thought the seats we picked at the back of the theater would be more comfortable, but I guess they weren’t… We should have left, too, but I wanted to stay until the end, so, tick…. tock… we stayed for the final third of the film and then had to drive all the way back to Oceanside (over 90 miles). To compound the stubbornness, I drove. The entire drive home, I was white as a sheet, gritting my teeth, cursing every car that got too close, every time I had to turn my head, every time I had to slow down, the pain was intense, but all I wanted to do was get home and get to sleep. We should have gone to the Emergency Room, but all I could imagine was getting into my bed. I had in my head that if we went to the ER, they would try and get my pain under control, tell me it’s a muscle spasm, then tell me to meet with my primary care physician, and kick me on my way, which would just tick me off and cost us like $250 or something. Why bother, right? Eventually, we got home, and I thought I would die…
Funny thing, though, where every other time, the “locked” feeling in my back went away after getting some rest, this time it didn’t. That “Grim Reaper” grasp on my lower right rib cage stayed and didn’t relent. In fact, it was getting worse and worse. We called to see our doctor and couldn’t get in right away, but were able to get in to see an on call doctor… From years of horror stories of triage medicine, I just assumed if I went to the emergency room, they wouldn’t really do anything for me. If you’re not going to die on the spot, if you don’t need a bone reset or something, they just patch you up, stick a band-aid on it, and send you on your way, right? Isn’t it how that works? I wasn’t willing to take that chance! My thought was that if a doctor was going to do that anyway (like the urgent care in 2012), might as well pay $20 for it. So, we went to see our primary’s on call doctor, he said, yet again, it’s back spasms, and, please note this, take three iburprofin, three times per day, these handy-dandy pain pills, three times per day, and wait to see your primary care physician for a follow-up. As another note, due to the flank pain, again, Amanda did suggest another alternative to muscle spasms… again… ignored… Six weeks passed before we could get in for that appointment.
Over the following six weeks, the pain continued to get worse. Nothing I did improved it. I went from going up to work regularly and working out of my office the rest of the time to working out of a recliner to working a lot of the time on a couch to working a lot of the time in a bed. The pain was spreading through my entire spine, wrapping around my rib cage, and it was ridiculous.
Six weeks… Six… long… weeks… Could I have gone to the Emergency Room? Sure! What would they have done? What are your symptoms? My back hurts!?!?! Flank pain, my spine hurts, my doctor says I have muscle spasms and I need to not sit in front of a computer for so many hours, but I have to support my family and I have a busy job, yadda yadda yadda… Seemed like a pointless Catch 22 exercise and, again, a $250 co-pay that was pointless for a band-aid. The primary care visit was fruitful to a point. The doctor wanted to get an MRI, because while muscle spasms seemed to make sense, the extent of the pain and the fact that there was no real explanation for when it would set off was a bit of a head scratcher. I wasn’t always working, I could be sitting on a couch, driving, in bed, etc… We need an MRI to get to the bottom of this, and some blood work, etc, but he also wanted me to see the local back surgeon, just to get it on the books, because the guy is hard to get in to. And, the clock started again. Again, though, Amanda brought up her suggestion on the flank pain alternative, and it’s possible some of the blood work should have been able to find some of those “other” possibilities, but everything came up clean… somehow…
Keep in mind here that not only is time passing, but we have to live here, too… Not only do I have a day job, but I’m a creative person, trying to get projects off the ground. I write a lot, or I did. My creative endeavors, which have been my “vent” to keep me from going insane for several years now have been hacked off at the knees at this point for over a year due to ongoing pain, doctors appointments, and this gnawing in my head of what is going on, the conversations after hours, and the bandwidth required in your head to deal with these things going on, not to mention the normal day to day things you have to deal with anyway when, you know, you’re an adult, have a complex life, single income family, wife, two pups, bills, rent, and the kitchen sink.
At this point, too, we’re creeping in on what comes to my busiest time of year, San Diego Comic Con. While my day job never stops, I’m always tending to work 50-60 hours per week, there’s always a lot of planning going into the convention. I have been running the Arcana Comics booth for a few years and, as a creator, I’m always looking to get things going on at the convention, whether it’s books coming out, meeting up with fellow creators, setting up panels, or whatever. This year, we launched The Steam Engines of Oz, and some other properties, so it was supposed to be a very important year, both or me, AND for a lot of other creators tied to Arcana Comics! For me, however, I was on the medical decline, struggling to find out what was going on, and it just seemed like things were getting worse…
Where the prior year, we never seemed to have trouble getting approvals for any tests when we needed it, our MRI couldn’t seem to get approved. While we waited for our pending back appointment, we debated with our insurance company why they should approve the MRI. A couple of days before my appointment with the back surgeon, they found out I didn’t have the MRI and tried to cancel my appointment because I didn’t have the MRI, which caused another set of problems, leading to an all out war between hospital, doctors, staff, insurance, and us… that was fun. Eventually, we got in to see the doctor, who tried a trigger point injection right in my flank (big mistake in hindsight), which made things work. After the appointment, he said he would partner up with my primary to get the MRI approved… In the end, it was shut down by insurance, and they had to re-submit it again.
There’s more to that story, of course. It turns out some of the problem was the internal approvals department at the hospital who was trying to dot their i’s and cross their t’s on the whole process and got their wire’s crossed and, in the process, we were hosed, delayed, etc, causing some of the confusion, but, in the end, regardless of what the doctors said, what evidence there was, or anything, there was nothing to be done.
The week before San Diego Comic Con was brutal. Something really critical came up for work requiring a lot of extra hours and burning the candle at both ends more than my usual specialty… I’m talking chug the caffeine, hold on tight, and just get it done. It wasn’t a question of IF I could get it done, it was just get it done, period. I had a great team of people helping me out, who put in a lot of hours to help, but I ended up burning 67 hours that week, the week before my “Vacation” for the convention to get it done, when I was already running on fumes, to get it done. That was probably the beginning of the end.
Friday evening, the week before SDCC, I logged off for the weekend, beyond running on fumes, I collapsed for the weekend. I was already sick, I was already dead, I was already questioning how I was going to handle the week ahead, but I knew I had a lot of people there who were going to be there to help me, so I figured I’d just make it work. I had the weekend to rest, to just crash… and I did… On Monday morning, I worked at the day job as usual, getting everything I could possibly taken care of, and then some, my normal yearly ritual before the convention, to make it so my back-up didn’t want to kill me while I was out for the week. Little did I know… I ended up working a lot of hours that day… And the next morning, in fact… There are always last minute this and thats that come up, but that’s neither here nor there in our field. I felt like hell still, but got it done, closed up shop, gathered my belongings, gathered my resolve, packed up my things, Amanda’s, etc, and we prepared to go…
On Tuesday, we got to the convention center and started set-up. There were some bumbs in the road, but, as planned, there were people there to help with the heavy lifting, so we thought things would be okay. We made some plans to prepare for my exhaustion, we had a hotel planned out that was relatively close, etc, so all would be well…
On Wednesday, we went to check in to our hotel… Hiccup number one… Our hotel wasn’t paid for. What? We had a confirmation from the hotel showing the hotel paid in full, yet when we went to the hotel, they tried to collect the amount in full. Turns out, they only held $1 on our account. Unfortunately, in the six months since we booked the room, we didn’t have the amount we needed for the room. Ok… Well… Umm…. I guess we’ll have to deal with the drive back and forth? Given the tenuous relationship I had with my back at this point, that wasn’t a very happy prospect. I should have known… Wednesday is Preview Night, so it was a short day, we had plenty of help, it was a crazy evening, lots of people, but it was manageable. Somehow, we survived a panel and some other things, but only just barely… At this point, I was so raw, so on edge with pain, I think if people looked at me wrong, I was just as likely to laugh, cry, or pick a fight. Anyone who suffered any of the three and were wondering why? Well, I apologize.
People could tell I wasn’t doing so well at the convention and helped as best they could, but my presence there seemed pretty much more formality than anything else, which is pretty sad… In the past, I was a force of nature, running around like a crazy person, selling, smiling, talking, wheeling, and dealing. By Saturday morning, however, I was a shell… And then I cracked. I sat down on a chair, looked at Amanda, and sank. Pain hit me in a wave worse than I’ve ever felt before (to that point), and it didn’t let go. I tried to tough it out, but it. would. not. let. go. Within a couple of hours, we were gone.
On Sunday, Amanda, her mother, and I came, they grabbed our things, and we were gone. SDCC 2013 was over.
While these things were going on, don’t think the approvals and other things were going stagnant, though! Amanda was fighting! She was making phone calls from the booth at SDCC, checking with doctors offices to see if approvals came through with MRI’s and other things to see how things were going. While I was pushing through pain beyond what I knew I could push through, she was being more tenacious than I knew she was capable of being. First thing on Monday after SDCC, she was back at it, fighting and fighting and fighting. Her mother really wanted me to go to the Emergency room, too…
Something new happened, though, that changed the game… I had been dropping weight, little by little. If you’ve been reading my blog, you’ll know I was suffering from different levels of chronic pain, sleep problems, and even some weight loss… The weight loss going on was fairly gradual, and I thought some of it had to do with sleep. When we hit the Monday after SDCC, between Monday and Wednesday after SDCC, I lost ten pounds in two days. Also, I started getting shooting pains down my entire spine. ALSO, I started getting neck pains. ALSO, I started feeling like I was going to pass out if I leaned my head back too far.
The final straw was on Thursday, July 25th. Amanda had this feeling my skin was turning a little yellow. When I woke up on Thursday morning, there was no doubt about it, my skin was yellow, my weight was down, and there were some significant kidney issues to match up to it as well. I was working (of course), we were still waiting for MRI approvals, etc, but Amanda said we had to go to the ER, and I didn’t argue. I’m glad I didn’t.
Remember those questions Amanda kept asking starting in 2012 about the “other” possibility of what could be wrong with me besides muscle spasms?
Within a few minutes of getting to the Emergency Room, they told me they were going to admit me. It wasn’t a question… They could see my skin. They drew blood, they had me hooked up to machines, they offered me pain medicine, etc… First question they ask, “how are you doing?” Stupid me, “Oh, I’m doing okay.” Amanda says, “hey, dork, quit saying that, you’re in pain!” Oh yeah… I had to tell them right away, and they put it in my charts, I wanted to make sure they noted to not give me more than the absolute minimum pain medication to keep me comfortable. You’ll see it in my pain post, but my concern was losing track of what was going on if they over-medicated me (the “wake me when it’s over” treatment plan). I’m really glad that’s how I played it, though it meant I had to suck up a bit of pain for a while, but I did get to keep track for a while and managed to get some good scans earlier than I would have.
So, here’s some hindsight… I’m lucky and I’m not… Since I had mentioned the shooting pain in my neck when they took all the specifics on what was bothering me, I got a general back MRI with and without contrast. Since I heard them mention something about an MRCP while they were rolling me around, while they had me at the MRI machine in the ER, I asked them to call around and see if the MRCP was approved… turned out it was. I managed to get about 90 minutes worth of MRI time all at once. As a funny side note, the first MRI, which was requested back in May, denied, denied, denied? It ended up getting approved the next day… Go figure…. This was all without having them tell me what was wrong, too.
Blood work, MRI, MRCP, ultrasound, no data, worried wife, and family. By this point, I had asked Amanda to post on FaceBook to let everyone know that I was in the Emergency Room. I’m not the kind of person who gets REALLY sick, and not someone who ends up in the Emergency Room.
A little while later, we got the news, bad, bad, and really bad. You have gall stones, your gall bladder needs to come out, your liver is enlarged, your blood work is out of whack, and, oh, by the way, you have bulging discs… Oh, and you know all of those ibuprofin that doctor told you to take? Well, you have erosions in your esophagus, too. They had already said they were going to admit me, so that was already established, I wasn’t concerned. The gall stones, however, were the question mark. “We think one of the gall stones may have gone into your common bile duct.” That’s what sent my system into insanity that week, I guess.
I was admitted, made comfortable, not allowed to eat (didn’t care), kept refusing to let them give me more than the minimum amount of pain medication (translation: being stubborn idiot), kept not quite understanding what was going on exactly, but decided that while I was there, they would just take care of everything that was wrong with me like some sort of medical spa, and I would check out of the hospital, good as new, and be able to get back to work… I guess it doesn’t work that way.
Thursday… Friday… Saturday… Sunday… Monday… Tuesday… I had one emergency surgery, one emergency procedure, and was put on round after round of antibiotics. They kept testing my blood again and again and again. After the emergency surgery, I lost track of what was going on for the most part because of pain (forgive me), met an imaginary televangelist, don’t remember visitors, apparently was very friendly with the staff, etc… What I didn’t realize, though, was how lucky I was to get to the emergency room when I did. My liver was shutting down. When they were doing round after round of antibiotics, it was because my liver wasn’t responding well. When they kept me for five days, it wasn’t just because I was in pain, it was because my liver wasn’t functioning. One of the liver enzymes they test on the high range hits around 70 and my tests were hitting 700. I should have realized… I could have died. I think it might be better realizing that now rather than it sinking in more at the time… I was scared enough at the time with everything going on.
Once everything was leveled out enough (five days in and they were considering keeping me longer), liver was under control enough, pain was relatively under control, etc, they kicked me to the curb, and Amanda took me home to crash on our bed. Honestly, I do not remember whole lot from that time. Funny enough, I guess I insisted on stopping by her parents’ house on the way home. I was wearing a Doctor Who robe (Fourth Doctor), and ended up pacing in their back yard, arms behind my back, just walking around. Absolutely no clue…
The days and weeks that followed were filled with a lot of struggle, heartache and pain, but also realizations as I “woke up” from what happened to me. Even to this day, I’m having those moments…
Without getting into a ton of detail on everything, because it would just get ridiculous, recovery became my number one priority, but it was only one part of my medical issue. I walked out of the hospital, having one surgery, one procedure, and a diagnosis, bulging discs. Since those were not life-threatening, they didn’t treat it. Since I was climbing back from the brink, it’s not like I could do anything about the discs, either. Plus, I had to wait for an appointment… And wait I did. Well, waiting is a relative term. We had follow-up appointments scheduled, I had blood-work scheduled constantly to monitor to make sure my liver function was still heading in the right direction, and everyone wanted to make sure that everything from the emergency room was resolving itself well. There were a couple of complicating factors from the emergency room, which threw a wrench in my recovery, plus the ongoing spinal issue. But, one question kept coming up, “Why does my flank still hurt?” It seemed like between follow-up appointments, tests, and everything else going on, and, oh yeah, I felt like garbage, time was flying by.
This is one thing you forget when you get out of the hospital, time does keep moving, and it doesn’t mean you’re miraculously healed. I was really weak when I got out of the hospital and, if anything, I felt like I was getting weaker when I got out. I couldn’t get out of bed aside from doctor appointments, and would get exhausted doing just about anything. The best example I can give is that one day, I’d get exhausted walking to get a glass of water, and the next I could get exhausted folding a blanket. I had dropped over forty pounds, was having trouble breathing, needed to sleep a lot, and wasn’t handling things well. I can say it with a smile now, at least (not that you can see the smile here).
We came to find out that the bulging discs were compressing the spinal cord, causing numbness and tingling and tossing pain signals places, even the flank pain. Things get complicated here, though, because the doctors think there could still be muscle spasms in play, and some other doctors had different thoughts. We were thinking shortly after we got out of the ER that I was going to have to have spinal surgery for the bulging discs, but it wasn’t definite. The spinal surgeon wanted some closer views, but couldn’t get the approved. The review company our insurance company uses wanted me to do conventional physical therapy before doing any more scans, but it’s kind of a crap shoot… WHAT to do physical therapy on? What would have happened if we had done physical therapy when it was my gall bladder that was the issue, for example? There are multiple issues here, various treatments, try one, mess up another, etc etc etc… We ended up in another battle to get some scans approved and I felt like I was stuck in the middle. We didn’t want to do the wrong thing! What’s funny is at some point, our insurance did approve the scans, and I did get them… and I did need them…
A lot has happened in the months since… We’re in mid-October now… Some of the hindsight can come in now a little better.
Were the doctors wrong almost eighteen months ago for saying I had muscle spasms in my back? Well, yes and no. It was spasms, but work wasn’t the cause, and without the cause, they never would have stopped! Plus it becomes a bit of a chicken or the egg discussion, I suppose. We’ve come to learn that my gall stones were around for quite a while. It seems that every time a stone dropped, it caused a joint where my lowest rib connects to my spinal cord to pop out of place and sends the whole area into spasms from the spot along the entire rib through the flank. Eventually, I guess, joint pops back in, all is well. Over time, the joint pops out for longer and longer stretches until it’s just trained to be “out” all the time, flared and painful, in spasm, but the pain path goes from where it connects to the spine long the path of the rib to that right flank spot. It’s a complicated and I’m horrible at trying to explain it to people… Bottom line, gall stone causes the joint to pop out of place, sends everything into spasms, eventually everything is locked up and “trained” to stay that way longer and longer. By the time we hit the Star Trek 2: Into Darkness screening, we’ve hit a year of the same repeat performance and it just decides it won’t let go. Also, during that time, the problem spread up the spine to other vertebrae, causing a bit of a domino effect. When the doctor explained this bit of news to me, I was actually a happy camper… I was thinking it was the disc compression causing the pain and wondering what it was going to take to cause that to go away. So, that’s hindsight #1… Gall Bladder was the issue back eighteen months ago now… If the doctor had even entertained Amanda’s suggestion, we may have avoided things a long time ago. If we only had known.
After much ado and frustration, I was allowed to start physical therapy. Concern from the doctor was starting physical therapy without the proper picture of my spine and doing more harm than good. It started out focusing on the bulging discs and shortly added the new information on the lower spine. The physical therapist has had to take it slow along the way, because my spine has been a real pain (pun intended). For the first few weeks, he did manual traction on my neck, and more recently integrated the traction machine (quite the archaic machine) to help try and “fix” my bulging discs. For the lower back, the goal is to retrain the joints from the root (joint where the lowest rib connects to my spine and up) to their normal movement and alignment.
While this entire process has been extremely difficult on many levels, it has turned into an educational experience. Really, you can walk away from these kinds of situations wondering what the heck happened to you, or look back and think what you could have done differently and learn from it. Also, I really did take the time I had and I did what I was supposed to do… My full time job was to heal, that was my focus, and that’s what I walk away with.
I could keep talking in circles about this entire process and explain what we could have done differently to get some of the approvals done sooner or twist some arms (arghhhh, bust some kneecaps!!!!), but I know we would hit the same roadblocks along the way. All we can do is hope that if something similar comes up, we can be pushier, that I’ll start going to the doctor sooner, and that we’ll have at least one group of people on our side helping us get to the right answer. I do know I won’t have problems with my gall bladder again, which is a plus, I suppose?
I had planned on going on some sort of rant about the medical system today, checkbox medicine, blah blah blah, but I just don’t know anymore what the true cause is to my own mess here. What caused the misdiagnoses? Why do doctors ignore their patients when they suggest something other than the usual? If it quacks like a duck nine out of ten times, what about that one time it doesn’t? The fact, though, that my symptoms were actually of gall bladder problems… kind of funny, right? right flank pain that wrapped around from the right to the front side. Oh, did I fail to mention that? Yeah, that’s not muscle spasms. When a workaholic with limited medical knowledge walks into a doctor’s office complaining of back and flank pain, but exhibits symptoms of gall bladder problems, they treat you for muscle spasms despite repeated questions and evidence to the contrary. My concern with “checkbox” medicine is when you can’t get in to see your primary care physician. All the on call doctors do is triage ~ they want to see you, patch you up, and get you out. They don’t care about long term care. That’s what you’re primary is for. With check box, every doctor sees you the same way, so you lose that personal touch along the way, because you’re always being ushered along. I think it comes down to the particular place you’re being treated. If you have PPO insurance and the place you get your care is starting to act an awful lot like an HMO, stop going there, plain and simple. The best care we’ve received in the last few months have been from single doctors with their own staff who handle things on their own from appointments through approvals and, not surprisingly, they got everything done in a timely manner, approved, 100% of the time. Again, go figure.
I think that’s enough for one evening, don’t you?
My Season in the Abyss… In the 1990’s, it was me listening to Slayer (thus the name)… these days, it’s doctor appointments, physical therapy, and rebuilding my mental and physical strength.