A.S. Face 0666: Rick P.
FACE 666: THE FACE OF THE BEAST
“If you can’t laugh at yourself, then you ain’t living right.”
I am Rick. Hear me roar. Some people call me Poker. I’m that guy with the jacked up spine who shuffles along, as I was once told, “like he’s got a corn cob rammed up his butt.” I like to say that I’m a crude, rude, sarcastic, universally dismissive prick. A lot of people try to tell me otherwise. They call me a “big teddy bear” or a “big softie.” Don’t listen to the lies. Don’t perpetuate them or I’ll threaten to cut out your liver with my letter opener. You may have deduced by now that I thrive on sarcasm, self-deprecation, and as my wife says… am a master of hyperbole. Napoleon Dynamite ain’t got shit on me.
Why haven’t I gotten to the part about the trials and tribulations of my lifetime battle with Ankylosing Spondylitis (AS) yet? How it took forever to get a diagnosis? How much no one understands OUR disease? How every day is a struggle just to complete the menial tasks that most folks take for granted? And the pain… the pain, pain, pain… the fucking PAIN. I’ll tell you why…because I am not my disease. I refuse to let it define me. Sure, it has shaped my life in so many ways, but first and foremost, I am Rick. I’m a Metal Head (I’ve never missed a single Mayhem Festival). I’m a gamer (XBox or GTFO!), I’m a tech geek. I’m a Poker player. I love to burn shit. I’m irrationally narcissistic. I’m dark, twisted, and have a warped sense of humor. I’m a bearded freak. I’m a moderate Atheist, although my mother insists that I’m Catholic. I’m a road trip enthusiast. I’m a storm chaser. I love, love, love being near or in water. I’ll tell you that I’m a professional driver, probably the best ever. My wife will tell you that I’m full of shit as she holds on for her life. I’m a quasi amateur smart phone photographer. I’m all of these things and so much more. Last, and certainly muthafuckin’ least, I’m a cripple.
Oh yeah, I almost forgot… I love kitties!
OK, let’s get to what you came for. This is not going to be a short story because my AS journey has been far from brief. I’ll break it down into sections though to keep your attention. I am one of over 2.7 million people (around 1% of the population) in just the United States alone that has a form of what is called Axial Spondyloarthritis. I have the most prevalent form, Ankylosing Spondylitis, along with a plethora of other autoimmune, neurological, dermatological, gastrointestinal conditions, and a variety of other fun stuff, most of which are directly or indirectly related to my AS. You see, Ankylosing Spondylitis is what is called a “systemic disease”, meaning that it can affect the whole body including multiple joints, organs, the nervous system, and skin. I got dealt an HLA-B27 Royal Flush.
From Zygote to Limp: The Grade School Years
At the time of writing this, I am 39 years old. I was adopted at birth so I have no knowledge of a history of Spondylitis in my biological family. My earliest memories of the pain and stiffness put the onset of my disease process around the age of 9 or 10 years old. I scored a head injury during an auto accident when I was 17 years old, so the details of my youth are a little shaky. I put together a lot of memories from pictures, old home videos, or from stories people have told about me (usually when we’re all drinking). Who knows, I may just be confabulating the whole thing. I was a very active child. I started bowling in leagues and playing soccer when I was around 6 years old. I was a Cub Scout, a Webelo, and then a Boy Scout until high school. I remember the comments about my funny walk back then. I could never quite gently release the bowling ball on the lane because I couldn’t bend over far enough. I was one of the slowest kids on the soccer team. I can still hear multiple coaches screaming at me to “pick up the pace!” as we did countless laps around the field. My parents took me to my doctor quite frequently for my complaints of lower back, rib, hip, and butt pain. They were told a variety of things: that I had growing pains, sports-related sprains or strains, mild scoliosis, or one of my favorite lines of bullshit – a “muscle imbalance disorder.” No blood tests. No imaging. Just a prescription, a pat on the head, and I was sent on my way. I believe that I started taking prescription NSAIDS around the age of 10. None of them seemed to help.
Still Persevering Through the Pain: The High School Years
I was a high school athlete; albeit not a very good one. I swam the 200 and 500 yard freestyle on the varsity swim team. I had an unorthodox kick (likely due to already fused sacroiliac joints) and was generally the number 4 or 5 swimmer in my events, so I didn’t get to swim in a lot of meets unless we were swimming against a lousy team. I was eloquently referred to by my teammates as a “goat,” a term of endearment for guys on the team that generally suck. I don’t remember if I ever even won an event (fucking head injury), but I did manage to accumulate enough points to varsity letter twice. My crowning achievement was finally breaking six minutes in the 500 during my senior year. I also played on the varsity tennis team and managed to letter in that. I played number two doubles with my best friend, Justin. To compensate for my lack of ability to bend over and pick up tennis balls, I developed a variety of techniques to flip up the ball using my foot and the racquet. The lower back, hip, rib, and butt pain continued. My doctor again attributed it all to excessive sports activity, muscle strains, etc. More NSAIDS and now muscle relaxers as well. By the time I graduated high school, I was taking 600 mg of ibuprofen four times a day and 10 mg of cyclobenzaprine (Flexeril) three times a day.
With college came a sedentary lifestyle. The only physical activities that I regularly took part in were keg stands, beer bongs, hacky sack, and stumbling around in the woods with my friends conducting a variety of nefarious missions. I gave pharmacy school a crack, but got thrown out due to bad grades after a year and a half. I regained focus in community college, then went on to get a Bachelor’s Degree in Psychology and a Master’s Degree in Social Work. I managed all of this in nine years. Most people that go to school that long are the ones prescribing my medications. During this period of time, I noticed that the range of motion in my back was starting to become severely restricted, hip pain was almost constant, and I started getting sharp pains in my ribs that felt like something took a bite out of me. My pain was beginning to interfere with sleep as well. I’d get woken up by sharp pains in my lower and middle back. My neck was so stiff that it prompted my doctor to put me on Paxil as he figured it was just anxiety (although I reported none). I got referred to a neurologist, a physiatrist, and physical therapy a few times. I was again told that I had a muscle imbalance disorder, some mild scoliosis, and slightly uneven limb length in my legs. An MRI was recommended by one of the specialists. It showed degenerative changes in my lumbar spine and spondylolisthesis. I was told by my doctor that this was normal low back pain and that I should lose weight as I had packed on quite a bit more than the “Freshmen Fifteen.” I found out many years later when requesting my medical records that the radiology report also stated that my sacroiliac joints were “not able to be visualized, may be fused, and further investigation should be done.” Nothing more was done though, except more NSAIDs, muscle relaxers, and now Paxil and Elavil to help ease the “anxiety” from all the pain that was likely in my head.
The Worst Pain EVER: The New Millennium.
The year 2000 brought many good things to my life. I had met my girlfriend, Jess, on Match.com in the summer of 1999. We were an instant hit and she moved from Arizona to Michigan just after Christmas that same year. She lived in the dorms at the university that she was attending briefly, but we quickly moved into an apartment together by the summer of 2000. I graduated from Grad School and landed a decent job immediately. We rescued three feral kitten siblings that couldn’t have been a day over three weeks old. We still have all three of them to this day. One of them is sitting on the arm of my La-Z-Boy chair right now giving me the stink eye because there’s a laptop where she is supposed to be. The little bulimic slut will probably puke in my slippers later to get back at me.
My first post-graduate job was as an assessment therapist at an addiction treatment center. It was primarily a desk job, but it also involved a fair amount of walking around the unit searching for patients, doing charting at the nursing station, and consulting with other therapists on cases. It was at this time that the sciatica began. It was crippling and it seemed to come out of nowhere. I would just be walking down the hall or getting up from my chair and BOOM!… excruciating pain radiating down my leg. It was so severe that it took me down several times. I recall countless episodes of laying on the floor of my office, in tears, trying not to scream, unable to get up for ten to fifteen minutes. This started happening several times a day and had me on edge all the time, anticipating the next attack. I sought treatment from my doctor again who again said it was all because I was fat. The bastard actually pushed his finger into my gut and said, “here’s the problem right here, pal.” Jess was with me that day and we both agreed that this would be the last time I ever see that asshole. He had been my doctor for the last fifteen years or so and he was now FIRED! I bounced around between a couple different docs for the next two to three years with no real results. More NSAIDS, more muscle relaxers, more psych meds, and the occasional narcotics when I begged like a dope fiend.
Problems with the Poopdeck: 2002 – 2003
Something else new and exciting happened during the early 2000’s. I began having bowel and bladder problems. Cramping, constipation, diarrhea, butthole bleeding, urinary tract infections… all sorts of fuckery. This brought on the gastroenterologists. They tested for celiac disease and I was negative. Thank Danzig. I love beer. I had to undergo a cystoscopy and a colonoscopy which were both negative. In the end I was told that I likely had diverticulosis from not eating enough fiber and being a generally unhealthy looking fat slob. About two weeks after my colonoscopy, I became violently ill. I looked like hell. People at work looked at me like I had the plague. I had a fever over 103, my bowels hurt, it hurt to pee, and my butt was bleeding so bad that maxipads seemed like a viable option. My wife took me to the emergency room where I was diagnosed with peritonitis and a perforated sigmoid colon (the last segment of your large intestine). I was monitored for a couple of days in the ICU and given a ton of dilaudid and antibiotics. The pain was unbearable. They ended up putting a PIC line in my arm and I would need to be on home IV antibiotics for three months. I was not allowed to eat any solid food at all for well over a month. I lost over 60 pounds in those three months, was off work to the point that I almost lost my job due to exhausted FMLA, and worst of all… I missed out on Thanksgiving Dinner! I remember asking my doctor if I could have anything at Thanksgiving, just a nibble. He allowed me to have a Sprite and I’ll tell you this, it was the best fucking Sprite I’ve ever had.
The PIC line came out after the holidays and I got a new bank of leave time from work, so it was time to get rid of that pesky busted up colon. I had a sigmoid colectomy to remove my entire sigmoid colon which was thought to be the source of all of my problems. During surgery, they discovered that I had a colovesical fistula connecting my colon to my bladder which explained the repeated UTIs. Interestingly though, barely any diverticulosis was noted, just a perfectly circular hole in my colon (about the size of a colon scope). In retrospect, I believe this to have been a bout of Ulcerative Colitis, when in conjunction with a history of fused sacroiliac joints (that I hadn’t known about at this point), it is referred to as Enteropathic Arthritis, a form of Spondylitis in the same family as AS. There is also existing research that suggests that massive abdominal infections may trigger or accelerate the disease process of AS. Whether that’s true for me or not, my disease process certainly kicked into overdrive after the infection and subsequent surgery.
A Better Income, A Loving Wife, A New Job: 2003 – 2007
After the colon surgery, my back pain accelerated rapidly to debilitating. Sleep was damn near impossible, with me screaming all night long as I felt spasms and stabbing pains all through my spine. Often times, I could not get out of bed at all in the morning without Jess’ help. It took me over an hour to get moving in the morning. I could barely get off of the toilet without her assistance. I stayed in the shower until I depleted the hot water heater. On most days, I limped to my car and struggled to get into it. Driving was painful. Every single small crack in the road felt like it was breaking something in my back. I had landed a much better paying job at another addiction treatment center as a utilization review case manager. Basically, I argued with insurance companies and helped coordinate patient care with therapists, doctors, nurses, and all other members of the clinical team. My one way commute to work was now almost forty miles instead of the five that I enjoyed previously. I dreaded that drive to work every single day. I could now barely turn my neck so checking my blind spot was impossible. We had bought a house recently in a small neighborhood with narrow streets and a small driveway. Backing out of the driveway was a challenge. My neighbor across the street loved to park on the street directly across from our driveway. I spent many weekends drinking beers on my front porch contemplating all sorts of evil on that bitch. Since I couldn’t turn my neck to see if anyone was walking down the sidewalk or driving down the road, I just rolled down the windows, turned off the radio, backed up slowly, and listened for either screams or honking. I was now on 800 mg of ibuprofen four times a day, various muscle relaxers, the psych meds, and the occasional vicodin, but only if I begged and was made to feel like an addict.
By the mid-2000’s, I progressed from periodic bouts of debilitating sciatica to bouts of paralysis in my legs. I began to have an unsteady gait and had to watch my step. If I stepped on a small sidewalk crack or even a pebble, one or both of my legs would go completely paralyzed for a moment and I would go down which then brought on horrific back pain, screaming, hopelessness, etc. Despite the pain, the inability to barely get out of bed in the morning, the bouts of temporary paralysis, I continued to go to work every day. I just sucked it up. It’s what I had always done. It’s what I was thought real men do. The only good that came out of the 2000’s was that Jessica and I got married in 2005. I couldn’t believe that this awesome woman who moved all the way across the country for me and has been caring for me like an invalid wanted to take me on for the rest of her life. Then one day in 2007…
That’s NOT Pink Eye: Finally Diagnosed!
In the spring of 2007, I began having problems with one of my eyes. It got very red and itchy, my vision was blurred, and it was very sensitive to light. I went to my flavor of the month doctor as I still couldn’t find a doctor that I trusted or who was willing to get to the bottom of all of my ailments. I suspected conjunctivitis (Pink Eye). He told me that it was not Pink Eye and to see an ophthalmologist of my choosing. I made an appointment that week to see the woman who would change my life forever. She came into the exam room and asked me to place my chin in the little plastic cup on the slit lamp biomicroscope that she would use to examine my eye. As with every optometry visit that I had been to for the last ten to fifteen years, I had difficulty placing my chin in the correct spot because I could not tilt my head up enough due to my stiff neck. She was patient with me though and proceeded to examine my eye. She told me that I had Iritis also known as Anterior Uveitis. She then stated “So who’s your rheumatologist? You have Ankylosing Spondylitis, right?” I was speechless. I had looked up this disease before and suggested it to my various docs, but was quickly dismissed. She ordered the typical battery of blood work. I was HLA-B27 positive and had a negative Rheumatoid Factor. She told me that I should see a rheumatologist as soon as possible. A great sense of relief rushed over me because I finally knew that it wasn’t just all in my head. I asked our medical director at work for the name of a good rheumatologist and he gave me a referral. I saw the rheumatologist in May. He ordered X-Rays which showed completely fused sacroiliac joints, and almost complete fusing at all levels of my spine. He did a comprehensive physical exam noting that I had less than two centimeters of chest expansion indicating significant rib cage fusing as well. He then made the official diagnosis: Ankylosing Spondylitis, at the ripe age of 34, some twenty-five years after the onset of my symptoms. He put me on a new NSAID, Tramadol, and now Methotrexate. He referred me to a new primary care physician in the same medical office building as him. He also noted that my X-Ray showed an area of concern at the T11-T12 area of my spine. It was described as a compression deformity with a possible active destructive process suggesting osteomyelitis.
A Broken Man, Anger, and Renewed Hope: 2008
My new primary care physician turned out to be one of the best physicians that I’ve ever known. She was young, probably around my age, eager, thorough, and empathetic. She was also a D.O. instead of an M.D. which in my personal opinion made all the difference. I asked one of the docs at work what the difference was and he summed it up perfectly. He stated that “M.D.’s treat the symptoms. D.O.’s treat the person.” She requested just about every medical record that she could get her hands on from the last twenty years and gave me copies as well. After my initial relief that I finally got a diagnosis, and upon reviewing my records, it became quite obvious to me that my diagnosis should have been made years ago. After all, my job for the last seven to eight years had been to closely examine medical records and to look for the holes in patient care or find justification for treatment, and I was fucking good at it. It only required a simple blood test and an X-Ray. I was pissed. I fantasized about slashing the tires on the car of my previous primary care physician, or about meeting him in a dark alley. Yeah, the fucker who just poked me in the gut with his finger and told me I’m fat and it’s mostly in my head.
I gathered all of my medical records and sought out multiple attorneys. One finally agreed to look at my case to see if there was malpractice for not making a timely diagnosis. I theorized that perhaps the destructive process of my AS could have been slowed down so I wouldn’t have been in an almost completely fused state this young. I was told two things. The statute of limitations had expired and that a judge would just likely say that the cause of all of my back problems was my car accident in high school. Door. Slammed. Shut.
Things only got worse now with my AS and I had no time or energy to pursue litigation further. The pain was unbearable and constant, the bouts of leg paralysis were occurring more frequently, my fatigue was overwhelming, I got almost no sleep. I had an MRI in early 2008 to investigate the T11-T12 deformity that the initial X-Ray discovered. It indicated that I had spondylodiscitis, possible osteomyelitis (infection of the bone), a compression fracture of both vertebrae, and possibly even a spinal tumor. I was referred to a neurospinal surgeon immediately who recommended a needle biopsy of the disc space between T11 and T12 vertebrae. The needle biopsy was attempted, but failed because they could not penetrate my spine anywhere. There was so much built up ossification (ankylosis) between my vertebrae that they broke several biopsy needles before finally calling it quits. My spine surgeon recommended an open biopsy. He wanted to open up my back to find out what was going on, and if something needed to be repaired, he would do it while he was in there.
My open biopsy/back surgery was complete in February 2008. Things were much worse than originally thought. Luckily, there was no cancer. My surgery lasted over 6 hours. When I woke up and my surgeon met with me in my room, he used the following terms to describe what was going on, “The disc space and ankylosis between your T11 and T12 vertebrae was completely obliterated.” Obliterated? That doesn’t sound good. His theory was that due to my spine being fused for so long (without my knowledge), it created a pivot point in the middle and slowly began shredding the ankylosis that fused my T11 and T12 vertebrae together. Simply trying to bend over repeatedly or even wiping my own ass could have done it. There were bone fragments, pieces of intervertebral disc, and broken bits of my T11 and T12 vertebrae grinding around, cutting and pushing on nerve roots, and the end of my spinal cord known as the Cauda Equina, and the whole mess was beginning to become infected. This explained the leg pains and bouts of paralysis. He completed a massive repair. In layman’s terms, he removed the back of both vertebrae (the lamina), cleaned out the space, cut off a piece of my upper pelvis, glued it between the broken vertebrae using an antibiotic glue, and then reinforced everything to make sure that it would never break there again. He did this by putting a screw in each side of 7 vertebrae from T8 down to L2 and then connecting each side with about 10 inches of titanium rods that were connected to each other in a few spots.
For you medical nerds (like me), here’s what is listed on my surgical report as procedures completed: T11-T12 Laminectomy, T11-T12 Extracavity Decompression, T11-T12 Extracavity Arthrodesis, T11-T12 Insertion of Biomechanical Device, T8 to L2 Posterior Arthrodesis with Pedicle Screw Instrumentation, Right Iliac Crest Bone Graft, and SSEP and EMG monitoring for four hours.
Now, in addition to having a spine that is fused by my own disease process, I had a large portion of my spine fused with metal. He then sealed me up with medical super glue leaving me with a nifty scar that was almost a foot long. He was also able to correct my thoracic kyphosis (forward stooping) with the hardware which ended up making me taller and able to look people in the eye again! I was around 6 feet tall when I graduated high school. I was 5 feet, 9 inches tall prior to the surgery, and I came out of it about 5 feet, 11 inches or so. I’m back down to about 5 feet, 10 inches now.
That night in the hospital was pretty painful. I could feel the pressure of every single screw pushing on my flesh, like they were about to tear through like something out of a horror film. The next morning, a couple of nurses and an occupational therapist came into my room and told me that it was time for me to stand up. My exact words were “You’ve got to be fucking kidding me, right?” They laughed, then lifted my bed back, swung my legs over, each grabbed an arm, and heaved my huge ass up and out of the bed. Holy shit! I’m vertical! I feel so tall! I can look people in the eyes again! They brought in a walker and instructed me to shuffle around the unit for as long as I wanted. For the next two days, I did an infinite amount of laps around my unit trolling for hot nurses to hit on. Once I was able to totter up a half flight of stairs with my occupational therapist, I was discharged. Unbelievable. Three days ago, I was splayed out on my belly, filleted open like a victim from the horror film, Hostel, with a dude driving screws into my spine with a drill. Now, they’re telling me to hit the road. I can still remember the ride home with my wife like it was yesterday. Those bumps in the road that felt like they were gonna kill me before? No pain. My wife kept gingerly crawling across the known bad sections of our pothole ridden Michigan roads, but I begged her to just hammer through because I was invincible now. We both laughed and cried all the way home.
Recovering from the “Backiotomy”
I was off of work for the next three months. I spent my days playing an insane amount of XBox with any and sometimes all of our three cats or our evil little dog sitting on my lap. I also discovered social networking during this period. It became and remains a huge part of my life, but I’ll come back to that later. When I wasn’t glued to the TV or the computer, I was doing laps around the block with my walker, trying to get stronger. It was winter so I was really hating on turds who didn’t shovel their sidewalks. I contemplated various acts of malfeasance on my walks. These inconsiderate turds must pay. I couldn’t go very far at first, maybe only fifty yards or so, before the burning started. My right leg literally felt like it was on fire. It started as a little numbness near the top of my thigh and then progressed down to my feet. After the burning began, along with numbness and weakness, sometimes I felt like I didn’t have the strength to make it back home. I called my surgeon and was reassured that this was normal and was called “table positioning neuropathy.” It was from them jacking my back around on the table which was a big inflatable bed that they could inflate and deflate in sections to move my spine into position. I pressed on through the Winter and finally got up to around 1 full small neighborhood block before the burning was unbearable.
Other highlights of this period were using the “cripple cart” at the grocery store for the first time. I was a wheeled menace, honking my horn, and wailing around the store determined to knock down every aisle end cap display and destroy the ankles of anyone who dared breach my 10 foot perimeter. My wife was less than impressed with my behavior. I also managed to get out every Friday night to Poker parties at my friends, Bill and Laura’s, house. All of my friends were in awe of the fact that I was even walking. There was only one chair that I could comfortably sit in and it was dubbed “the Rick chair.” When we drew cards for table position, people automatically put my chair in my spot at the table. I never had to get up to get my own beer, friends swept my chips for me whenever I won a hand (which was basically always, because I’m like the best Poker player ever). It was then that my friend, Bill who hosted our Poker nights, dubbed my surgery, “The Backiotomy.”
Time to Fire a Rheumatologist
I returned to work in May of 2008 after pleading with my surgeon to make sure that he cleared me before I exhausted FMLA leave and faced termination at my new employer. My back seemed better overall. The random paralysis, sciatica, and terrible shooting pains that kept me up at night were a thing of the past. The burning in my leg still persisted when I walked too far or sat in my office chair for more than an hour or so. During lunch on most days, I went on walks with my co-worker around the hospital campus hoping that the nerves would slowly rebuild. They didn’t. The burning progressed and I also started to get phantom stabbing pains in my legs and feet. I would swear that I stepped on a nail or there were rocks in my shoes. I would remove my shoes and have someone check, but there was never anything there. I started getting the feeling like bugs were crawling on my legs. They itched constantly. At home, I noticed that when wearing shorts and sitting in my La-Z-Boy with my legs up, I couldn’t even tolerate the wind blowing across my leg hairs. Whenever my cats strolled by and their tails touched my legs as they passed, instant pain, burning, and itching. The worst part? I couldn’t reach me legs to scratch on them. I purchased a bamboo “monkey paw” back scratcher and it’s always by my side to this day. Sometimes, the better technique to dull the pain was to beat on my legs until they were red instead of scratching on them. I now have no hair on my shins from constantly scratching or beating on them. I explained all of this to my rheumatologist and wondered if my AS could be causing some of this. He told me definitively, no. I was also beginning to experience a lot of hand pain, feet pain and shoulder pain. I was losing the range of motion in my shoulders. He started giving me steroid injections in my shoulder and AC joint (where the collar bone connects to the top of the shoulder blade). He gave me countess injections with no improvement.
By now, I had begun doing my own research on AS, trying to learn everything about it. I read about biologic medications. I read about all the systemic effects and was starting to put the picture together of how many of the things that I had endured over the years were likely attributed to my disease. I suggested to my rheumatologist that maybe I should be on a biologic medication as the methotrexate and piroxicam didn’t seem to be helping. My back felt better after the surgery, but now my other joints were starting to hurt, I was still stiff in the morning, fatigue was an issue. He again told me that methotrexate is sufficient treatment. Finally, on one of the days when he was about to stab me in the shoulder again, I brought him an article from the Journal of Rheumatology discussing how twenty percent of AS patients have shoulder involvement. He waved me off and said that he doesn’t read the Journal. What the fuck?!?! You’re a rheumatologist, dude! I took the injection, walked out to the lobby, requested my complete records from the medical assistant, and informed her that he was no longer my rheumatologist. Fired doctor count: Five.
I returned to my awesome primary care physician who referred me to a new rheumatologist, a neurologist, a podiatrist, a gastroenterologist, and a dermatologist. I told you, the woman is thorough. I saw my new rheumatologist within a week thanks to a call from her. He brought in a pile of medical students and residents and used me as a teaching case. He was the director of rheumatology at the hospital where I had my back surgery performed. He told me that I had a severe case of AS. He also told me that methotrexate has little use in the treatment of AS, that it is primarily for peripheral arthritis like Rheumatoid Arthritis. He ordered me to get a TB test, a flu shot, and a pneumonia vaccination and stated that he would go to battle with my insurance to start me on Enbrel. Within a couple of weeks, I was back in his office getting shown how to inject Enbrel. After about a week, my cooler full of magic arrived in the mail. Within 48 hours of my first injection, I felt a rush of energy like I haven’t felt since childhood. I wanted to run and I tried. I jumped for the first time in over fifteen years and I didn’t die. Is this what cocaine is like? This shit is awesome! After a couple of injections and a sunburn red and warm thigh, I discovered that I was pushing the pen too hard and was injecting into my quadricep and not subcutaneously. Oops. Switched to a different injection site and to the syringe and got more typical, but still satisfactory results. I do miss that first rush though.
Back Fixed? Everything Else Goes to Hell:
By early 2009, I had seen a ton of specialists trying to get all of my AS-related complications under control. The podiatrist stated that I had Plantar Fasciitis and Achilles Tendonitis. She had custom orthotics made for me. Unfortunately, the slip-on shoes that I had been wearing for years did not provide enough support for the orthotics to work effectively and I had to buy quality tennis shoes. I could not reach below my knees, yet alone tie any shoes, thus started the era of having my wife and coworkers tie my shoes for me. Days when my wife left for work before me meant that I was on my own. It became pretty embarrassing to shuffle into work in my slippers on many days to seek out someone to help put my shoes on and tie them for me. Nonetheless, I persevered as always. The orthotics did help my foot pain tremendously, so going back to slip-on shoes was not an option.
In early Spring of 2009, I woke up one day and everything was spinning wildly. I had to grab on to the bed for dear life because it felt like it was spinning side over side at 100 mph and if I let go, I’d surely go flying into the wall. It took me a several hours to make it to my feet. I was only able to do so by keeping my eyes closed and clinging to the walls as I got thrown back and forth against them while making my way down the hallway. I was treated briefly in the ER for vertigo and sent home with a prescription for Valium. I saw my primary care physician the next day who referred me to an Ear, Nose, and Throat specialist, so add Otolaryngologist to my list of specialists. I went through a comprehensive series of tests including hearing and balance tests. The diagnosis was Meniere’s Disease, a form of vertigo caused by fluid imbalance or crystals forming in the inner ear. The treatment was a special over the counter vitamin called Lipoflavonoids and Valium during acute vertigo flares. I continued to have disabling vertigo for almost three months straight. Again, I almost exhausted my FMLA leave and risked job loss. The Meniere’s disease also brought on Migraines that didn’t stop even when the vertigo finally ended. This shit was getting old.
I started seeing a neurologist regularly to try and get to the bottom of my leg issues. Countless MRIs, EEGs, and EMGs later, I’m told that I have severe lumbar radiculopathy, spondylolisthesis, lower extremity peripheral neuropathy and parasthesia, migraines, and the beginning of AS-related Cauda Equina Syndrome. So it wasn’t just my back surgery causing all of these leg issues, it’s the fucking AS again. If you don’t know about AS-related Cauda Equina Syndrome, it’s not fun. Basically the “fusing” destructive process of AS begins turning your nerves to bone where they exit your lumbar vertebrae. It causes severe nerve-related leg and butt issues. I have a lot of itching now on the back of my thighs and butt, also known as the saddle region. It also causes urinary and bowel incontinence or retention issues. Luckily, I’m not incontinent… yet. I’m having the retention issues though. It’s not quite constipation. It’s a feeling that you have to go, but no matter how long you camp out on the porcelain throne, nothing seems to happen. It’s like the nerve that supposed to tell your butthole to open up the flood gates ain’t working. Your nerves may be screaming, “Let my people, go!” but no one is listening. Peeing is the same way. I always feel like I have to go, but then I just stand in front of the toilet forever waiting for something to happen. And as if sex wasn’t painful enough already with a fused back, now it’s goodbye O-face most of the time. More details can be found here: http://www.spondylitis.org/about/cauda_equina.pdf
A year or so after having my immune system suppressed by the Enbrel, I noticed some skin problems. I thought it was just really bad acne or maybe folliculitis. I had problems when I was younger with pretty bad acne. These were super pimples though, forming huge hard lesions with vein-like things connecting them. They would form so big in my armpits or on my inner thighs that it made moving my arms or walking difficult. I saw the dermatologist and found out that I have Hidradenitis Suppurativa, a condition that causes chronic inflammation and infection of sweat glands and hair follicles. Awesome. It’s related to HLA-B27 too. I now get to take oral antibiotics twice a day and apply antibiotic ointments all over my body for the rest of my life to attempt control it. Thanks again, AS.
Next, I was off to a shoulder surgeon for a consult on my constant shoulder pain and rapidly diminishing range of motion. I could barely raise my arms above my head now. Washing my hair and scratching my ass was becoming a real problem. He ordered an MRI which revealed what I suspected and then some. My AC joints were indeed beginning to fuse AND I had tears in my rotator cuff and supraspinatus tendons. Who knows how the tears happened, but I did read some journal articles that stated how excessive steroid injections in the shoulder could cause weakening in these tendons (Remember that asshole rheumatologist who doesn’t read the Journal of Rheumatology?). The tears aren’t quite bad enough to risk surgery which would require going off of my Enbrel for months and my AC joints are just gonna continue to fuse anyway, so it’s off to Physical Therapy for me.
Problems with the Poopdeck: Part II (warning: this section is very graphic)
Now for the worst part of all. A literal pain in the ass. I hadn’t mentioned it yet, but ever since my back surgery fixed that convenient “pivot point,” also known as a broken spine, my range of motion was severely diminished. I can’t pick things up without using an assistive reaching device aka “the grabber,” I can’t tie my own shoes, I can’t turn easily to check out that chick who just walked by, etc. The worst problem though… I could no longer wipe my own ass. I tried using common kitchen tongs, but the shoulder injury made it difficult. My technique was to strip naked from the waist down, put one leg up on the toilet seat, wad up some toilet paper in the tongs and go at it… forever. Try it some time with tongs. You can wipe and wipe and wipe, but you’ll never get that confirmatory clean paper indicating that the job is done. I tried this at work for the better part of a year. I would be in the bathroom for like 30 minutes or more, sweating and stretching. All the while, people are beating on the door. “Are you alright in there?” Then I’d come out with no shoes on, with a crowd of onlookers waiting, as the bathroom was behind the nursing station at work. I would then have to ask someone to tie my shoes and explain why I had tongs. It became a joke at work when I’d come storming down the hall with my tongs in hand. “Look out! Here comes Rick with his ass tongs!” I laughed it off, but it was no joke in the bathroom. Eventually, I grew tired of the routine, the beating on the door, the answering of questions, the asking for help with my shoes, and just gave up on using the bathroom at work. I just decided to “hold it” all day long until I could get home, use my own toilet, and then get in the shower and use the “bend and spread ’em” technique to power wash my angry brown spider. Eventually, my wife begged me to let her wipe for me. After all, she used to be a nursing assistant and had wiped an infinitesimal amount of butts. She had also almost finished nursing school at this point. I found this completely unacceptable, humiliating, and emasculating. Eventually though, I gave in and to this day our toilet paper budget is significantly less. The bonus? When we do eventually have kids, I know everything about baby wipes as we’ve tried all types on me!
As you might imagine, “holding it” for ten to twelve hours every day is not without consequences. I eventually developed massive hemorrhoids, both internal and external. They were painful, they bled, and they prolapsed with bowel movements. Worst part? You guessed it. If I can’t reach my ass, how in the hell am I supposed to apply all kinds of angry ‘roid ointments to them? Then one day at work, something horrible happened. I was just sitting in clinical team as I do every morning and I felt wetness on my ass. I stood up and my coworkers pointed out that the back of my pants were completely saturated in blood. I looked at my chair. It was soaked too. Red faced and embarrassed, I rammed a towel in my pants, limped to my car, and headed to the doctor. She took one look and referred me a surgeon. Time for another surgery! Hoo-fucking-ray.
The hemorrhoidectomy occurred a few weeks later. It was done on an outpatient basis. Small side note about surgeries when you have AS. In pre-op, for every single surgery that I’ve ever had, the anesthesiologist has hurt my back by rapidly lowering the back of my bed despite my warning that I have AS. I’ve even had my wife hang signs on my bed that said “Patient has a broken spine. Do not suddenly move his bed.” Without fail, they hurt me every time. Also, I’m always the one who has to instruct the anesthesiologist that they might want to use a fiber optic pediatric intubation scope so they don’t break my neck during intubation. Attention medical professionals: This is completely unacceptable! OK. Enough about failed physicians. I’m sure that every single one of us with AS are well aware of their ineptitude. Back to my broken ass.
I was off work for another 3 months due to my ‘roid surgery. The recovery was exponentially more painful than my back surgery. They literally pack your butt with gauze or a “manpon” as my friend, Mike, deemed it when I posted the picture of it on Facebook. They then stretch a piece of highly adhesive rubber across your butt cheeks to squeeze ’em together to hold it all in. Sitting on my butt and playing XBox during this recovery was nowhere near as enjoyable. How do you get that out, you ask? When you’re finally ready to have a bowel movement, you have to push it out through your stitched up tender hole. It’s like a surgical packing abortion. I felt like I was being turned inside out and have never screamed louder in my life. But before that, the highly adhesive rubber needs to come off. And I mean HIGHLY adhesive. They could’ve helped a cripple out by shaving his butt, but noooo… I got to experience the second worst pain ever. Jess came home from work at lunch that day to help with the torture. I screamed LOUDLY for a solid ten seconds, and then cried so much that I started laughing at myself for how much it hurt and how much I was crying. It probably took Jess a good two to three minutes to slowly rip that bastard off of my furry butt cheeks while I carried on with my infant-like babbling cry laugh. I’ll spare you the picture here. You’ve been tortured enough with this detailed account.
Back to Work Again… or Not?
So after running my FMLA leave out to just a few days shy of being fired yet again, I was back to work. I probably could have returned to work much earlier, but my physicians agreed that a solution was needed for my inability to wipe. I requested an ADA reasonable accommodation from my employer and after haggling with them, and having them stall for weeks, they finally installed a washlet for me. If you don’t know what a washlet is, it’s a toilet/bidet hybrid. It’s a special toilet seat that attaches to any standard toilet, but it was has a little wand that extends out of the back on demand and sprays your butt like a bidet. It even has a dryer to finish the job. I had the Cadillac of washlets installed. This thing even had a remote control!
Unfortunately, due to the anatomy of my shattered and dislocated butthole from the ‘roid surgery and the colectomy, it still didn’t get the job done. Every day, I’d get home and present butt for my wife’s inspection and I didn’t pass, and required the baby wipes again. I again, persevered, used my washlet, and walked around all day at work with what my Grandma used to call “the shit ass.” About a month after my return to work from surgery, I was treated to a horrible AS flare. I woke up one day
and could barely walk. I called in sick and was told that I would face disciplinary action unless my doctor put me off work as I was out of sick time. I met with my primary care physician and my rheumatologist in two consecutive days and we decided that it was finally time to throw in the towel. They put me off work on leave again with an indefinite return date. Since I only had a few days of FMLA leave left, I received my termination paperwork from my employer within a week. Nine years to get a Master’s Degree and I only used it for eleven years. I immediately started the process of filing for Social Security Disability and said goodbye to my career.
Financial Turmoil and a New Hope
Due to the multiple medical leaves over the last three years, I was in major debt. My short-term disability pay was only $165 a week, hardly enough to pay just my car payment and insurance, yet alone utilities, a mortgage, maxed out credit cards due to medical bills, and student loans. I had even taken out personal loans from my credit union during my leaves to help pay off medical bills, but I couldn’t even pay these loans now. I gave up on the mortgage long ago after many futile attempts to get a loan modification and we were in foreclosure, facing eviction within a couple of months from the time that I lost my job. Bankruptcy was my only option. This was a very low point for me. I wasn’t raised like this. I know my parents were disappointed. Nine years wasted on an education, filing for Bankruptcy, and Social Security Disability at the ripe old age of 38 years old. We had less than six weeks to vacate our house.
Then one day, a ray of sunshine in my dimly lit world. My wife’s parents had just bought a new home and were in the process of moving into it, but they hadn’t sold their previous condo yet. They made us an offer that we couldn’t refuse. We could live in their condo rent free while I awaited approval from Social Security. The only problem was that they and the condo were 2000 miles away in Phoenix. This meant that my wife had to quit her job too now. In less than five weeks, we sold everything that we could. My friends and family really jumped in here and bought everything at great prices, way better than I could have gotten at a yard sale. Lawn mower, snow blower, my old Trek mountain bike, appliances, air conditioners, everything had to go. We even sold my wife’s minivan back to a friend who we bought it from just five months earlier. All this barely rented us the biggest piece of junk moving truck that money could buy and hopefully enough gas money to get the two of us, our dog, three cats, two turtles, and a giant Pleco fish, all the way to Phoenix. There would be no money for motels. We would drive non-stop all the way in shifts. Our friends helped us pack that rolling death trap all the way to the ceiling and we left in the early hours of darkness on Halloween morning in 2011, arriving at our new home on the morning of November 2nd, almost fifty hours later.
A Year in the Desert
It’s been almost a year now that we’ve lived in the condo in Phoenix. It’s a beautiful condo. Much nicer than the home that we lost to foreclosure. I can walk out my front door and look at Camelback Mountain which is a mere six blocks away. The Phoenix Zoo and Desert Botanical Gardens are within a couple of miles. I’m minutes from both downtown Tempe and Scottsdale. Before moving to Michigan, my wife lived her entire life in this condo. I proposed to her in this carport on leap day almost a decade ago on a visit home to her family. I couldn’t be more grateful to her parents for offering us this opportunity to rebuild our lives. It has been a year of ups and downs though.
I enjoyed the Fall, Winter, and Spring and the desert dry heat. The lower humidity does seem to help decrease my overall level of joint pain and decrease my frequency of flares. I’ve enjoyed walking the dog around our little condo complex, although I still battle with numbness and burning in my legs. Our condo complex has a pool, so I’m frequently in it trying to stay limber by just walking around in it. I’ve tried some light hiking near the base of Camelback Mountain. I look up at its 2700 foot summit, hoping that I’ll somehow be able to climb to the top one day. The Zoo is awesome. My good friend, Cookie, bought us an annual membership to the Desert Botanical Gardens which is beautiful. We’ve gone on a few road trips to Mogollon Rim country, Flagstaff, Sedona, Jerome, Payson, and Meteor Crater. I’m becoming quite the amateur photographer and am rapidly becoming an Instagram hit. Our animals love the convenience of a dog door to our small back yard. It has a tall brick wall, so the cats are able to enjoy the outdoors for the first time in their lives. They spend most of the day lounging out there whether they’re baking in the sun on the patio or huddled together on the lounge chaise on a cool desert night. All of this has helped get me through the tough times.
I’m a Social Worker. I know that the road to Social Security Disability is a long one. Somehow though, I thought I’d be one of the lucky ones. My AS friends certainly assured me that I’d likely get approved quickly because I’m one of the more severe cases that they know. It didn’t happen though. I filed originally within a week of losing my job in September of 2011. I was denied in May of 2012. I hired lawyers and filed a reconsideration. I was again denied in August. Even though I knew the denial was inevitable, it brought tears to my eyes both times. I was given Medicaid during the beginning of the year, but it was cancelled when my Social Security was denied because I was no longer eligible because I wasn’t officially “disabled.” My wife struggled for 10 months before she finally found a job in September of 2012 and she won’t have healthcare insurance until December. Meanwhile, my attorneys insist that I stay on all of my meds and keep seeing physicians regularly or when I have my disability hearing, the judge will say that I’m not disabled if I don’t require regular medical care. How the fuck am I supposed to do that with no insurance or income? One of the most humiliating days of my life was the day that I had to sit in the local public assistance office all day long to apply for food stamps. Now that my wife has a job with barely above minimum wage pay, our food stamp allowance has been reduced to $16 a month just when we agreed to start paying rent to her parents who have been paying all of our bills this whole time and two mortgages. Rent that won’t even cover half of what they spend on keeping us in this condo. Now, we’re gonna need help paying for groceries again. I’ve been feeling very low lately. I even made impulsive suicidal statements. I didn’t really mean it, but somehow when you’re hopeless, you can’t help but shout it out when you feel things can’t possibly get any worse and then you open the mail again to more bad news. At times, my life seems to be consumed by countless appeals, hopeless Facebook status updates, and scraping together money for medications and medical appointments. Being confined to the indoors during the brutal Phoenix summer didn’t help either. I’m left with just my thoughts. I had big plans for my retirement. I was going to finally finish Fallout 3. My XBox Gamerscore was going to be epic. I was going to start a blog. I was going to be the best Spondylitis awareness advocate ever. Perhaps, finally getting around to writing this is a good start. This has certainly been a much longer story than I intended it to be and I thank you for reading this far. It has been a cathartic experience indeed. I’ll end on a positive note now.
How I Survived Ankylosing Spondylitis
After I was finally diagnosed with AS in May of 2007, I wanted to find out everything that I could about this disease. First, I was relieved to finally know what was wrong with me. Then, I was pissed that it took so long to get this diagnosis despite obvious symptoms and I attempted to sue my physician of almost twenty years. Finally, I gained acceptance. I decided that I would somehow make a difference. I would tell everyone about this disease and my voice is fucking LOUD. I joined the Spondylitis Association of America. I watched an inspiring video on their website by a young woman by the name of Fee. I linked her video to my MySpace page (I hadn’t discovered Facebook yet) and sent her a friend request. When I wasn’t playing XBox during my multiple medical leaves, I was becoming familiar with Social Networking. First MySpace, then Twitter, and eventually Facebook. I abandoned MySpace long ago and stick to just Facebook and Twitter now although it’s been a long time since I’ve tweeted.
My first Facebook friend with AS was also Fee. Soon, I had a posse of AS buddies, always by my side through the best and worst of times. Soon after joining Facebook, I quickly found a Facebook page by the name of ASAP: Ankylosing Spondylitis Awareness Project. They were running a photo contest at the time and were asking fans to submit photos that showed how AS had an impact on their lives. The prize was an ASAP t-shirt. I submitted a photo of me struggling to get into a car because I couldn’t bend my neck. Fee and I tied for second place and both got t-shirts! Shortly after the contest, Kelly, the co-founder of ASAP, befriended me on Facebook. She shared the same passion as me and asked me to help her run the page along with her co-founding friend, Sean. During Spondylitis Awareness month in April of 2010, she asked me to help her with a project that her and another AS patient, Jenna, had thought of and so Hope and Apples was born. I opened up a new Twitter account, and blew up the Twitterverse. I was tweeting over 50 tweets a day, helping to manage ASAP, and brainstorming with Kelly almost daily on other endeavors. Hope and Apples was featured in Spondylitis Plus, the Spondylitis Association of America’s monthly member publication. A picture of my ugly mug was printed in there a few months later. I opened up a third Twitter account for the purpose of delivering ASAP’s message and tweeting with AS patients and people in healthcare. Around the time that the Hope and Apples project came to a close, Kelly introduced me to Cookie, the newest member of our ASAP team and founder of this blog. There is no other member of the Spondylitis community that works as hard as Cookie. For every ounce of passion that I have, Kelly has a hundred pounds, and Cookie has a ton! I don’t know many people who haven’t had Cookie touch their lives in a personal way. I am very honored that she reserved this special spot, Faces of AS #666 for me and my cold, dark, heart.
Don’t you dare say it! Remember what I said in the first paragraph? My favorite letter opener is right here beside me and it is very sharp! Stand Tall!
And now for a ton of pictures of me laughing, loving, and living without regard to AS!
Arizona, United States of America