March of 2010, I embarked on a trip to the Bahamas where unknowingly I would leave my simplistic, ordinary world behind. I traveled with a friend and his family. Our first day off the ship in Nassau I noticed a young boy who sounded like he had whooping-cough. Carelessly, I joked about the sight in front of me. Some vacation he’s having, I thought to myself. For a couple of days later I was in that boy’s shoes, running a fever so high I could not move from the cabin. A cough so deep that rattled my insides, my nose a never-ending facet of mucus. I was the one teased and made a spectacle of for contracting this illness, for we were supposed to be out enjoying ourselves. Last, I recall was sitting in the Miami airport awaiting our plane home. I was very ill, everything was hazy. It was unbearable to hold my head up or keep my eyes open. On the plane I was seated next to a stranger. I was depleted, the entire plane ride I slept, awakening each time when my head tilted over, landing on my neighbor’s shoulder. She was appalled from the get-go having to sit in such proximity to someone this disgustingly sick, even worse, forced to contact them the near five-hour trip back to NY.
Once I returned home, I did not leave my bed for a week straight. This was worse than mono I had experienced a year prior, where I was sick for months on end. My primary care doctor determined it was a virus and began me on steroids. During treatment for mono and this virus my primary care did no testing but diagnosed me with ulcers of no specific origin. Due to steroid use, both times I was vomiting what looked like coffee grounds. I was prescribed Nexium and other drugs to relive symptoms. I was experiencing heart burn, gas, and nausea. While recovering from the virus, I was confined to my bed. During this time, I developed an aching, constant pain in the lower left-hand side of my back. I assumed from spending too long in bed, perhaps I laid on it wrong causing the irritation. A month before the cruise I had slipped and fallen down a flight of stairs. The fall didn’t hurt at the time, but I did land on my lower back, suspecting that could be another explanation of the pain. I returned to my primary care doctor, he agreed with my reasoning and started me on muscle relaxers. Three weeks later when I returned for my follow-up visit the pain was still there. He prescribed a different muscle relaxer, Hydrocodone, and referred me to physical therapy. I attended physical therapy a couple of times a week. Neither medication or exercising was making a difference.
July 2010, I received a job offer from Target unloading trucks overnight. I have always had a high pain tolerance; my back was more of an annoyance than anything. The job was very physically demanding, which was why I enjoyed it. I was assigned on the front of the line being I was quick and tiny. My job was to pull laundry detergent, and home cleaning supplies, along with pet food off the conveyor belt as it was unloaded from the truck. Around the holiday’s I was pulling fake Christmas trees and stacking them on pallets. At the time I was 125lbs. I went beyond the lifting restrictions for my size that the company mandated in the rules. My back bothered me throughout my time working there, but never enough to slow me down.
Reflecting on my life before this point I feel there are key components that have influenced my well-being. I have always struggled with insomnia, stemming back to early childhood due to environmental circumstances. I blame aspects of my condition on this. In my late teens I was diagnosed bipolar II. From my early teens to my early 20’s I struggled with mood disorders and depression. I was a genie pig to many antipsychotics and antidepressants. One that worked best for me was the long-term use of Seroquel. I was able to get myself into a normal sleep habit for the time being. For me every drug comes with a side effect. Seroquel’s side effect was the feeling of all-day drowsiness the following day but, being tired after a full night’s rest compensated for never sleeping.
Late December of 2011 I was asked to scan the truck at work. Scanning was an easy, un-demanding task where I would stand in the back of the truck and scan each parcel that we unloaded, later to be used for an inventory report. After the truck was unloaded we would stock the store shelves. I was assigned men’s clothing. I was hanging up clothing, when all of a sudden, my legs started to feel limp, there was an unfamiliar vibrating feeling that would pulse on and off from the left lower side of my back, down the back of my thigh and into my calf. I started to feel off and progressively weaker as the day went on. I felt like I was going to collapse, as if my body were too heavy for my limbs to support. I finished out my shift that day. By the time I left I was limping and felt like I could barely stand. Something was wrong, my body was telling me to go to the emergency room. The doctor there was puzzled, not knowing what the reason could be and assumed it was from heavy lifting at work. He prescribed hydrocodone, muscle relaxers, and recommended to take a day or two off work.
Within a week my body over flooded with unbearable pain and weakness. I could no longer walk, even laying down was agonizing. There were times I couldn’t stand; my legs were weak, frequently giving out from underneath me. I had no choice but to start using a cane. Returning to work was out of the question. I was advised to apply for short-term disability through my employer. Human resources inquired if it was a workers comp related issue. I denied seeing how I had preexisting back pain, I assumed it was related to that. I started experiencing severe nerve pain, up and down my entire legs would feel like a bolt of electricity was jolting throughout them. I would yell in agony and cling onto whatever was near. I began experiencing episodic tremors in my lower extremities, made worse with trying to stand and squatting to sit down. I was going to different emergency rooms and doctors, which was most days of the week because the pain was unbearable. The process became routine. I would go alone to not hassle anyone or cause worry. I was always in such bad condition, nurses would immediately put me in a wheelchair and rush me in to be seen. I would be pumped up with morphine and valium, prescribed pain medications, then be discharged.
Aside from routine ER visits I began seeing a variety of specialists, who were each stumped. My nerve pain was so intense that I could no longer take hot showers. Hot water on my skin was the equivalent of being stung by a jelly fish. Water touching certain parts of my back, hips, or legs would cause an intense radiating shock-like pain deep into my skin. I was unable to shave my legs for over a year because they were extremely sensitive. Most days it hurt wearing pants, even socks. A sock snug around my ankle felt as if someone lit it aflame and the fire was singing my skin. The delicate touch of a hand on my lower extremities and entire back was usually excruciating. The muscles in my lower back and hips were also extremely sensitive.
I was referred to a pain management specialist who had flat-out told me that I was crazy and needed mental help, because my symptoms were not possible. As if I wanted to be a 21-year-old strutting around with a cane. I left his office immediately after his ignorant remark. This was the first doctor appointment I had my mother come to since my symptoms started. I had been explaining to her I was not being taken seriously. After hearing the doctor’s comments, she understood the reality of the situation. Most of my doctor appointments had similar outcomes.
I started seeing a neurologist, guessing that it could be multiple sclerosis (MS) or some other demyelinating condition. He conducted various series of MRI’s, X-rays, labs, and an EMG of my legs. EMG which is short for Electromyography, was the most painful testing I’ve endured. The doctor placed close to an inch-long stake into various areas in my legs which sent an electric shock to the area. With my body already hypersensitive this was agonizing. This test is performed to eliminate muscle or nerve conditions. It determines if motor neurons are firing normally in reaction to pain. The results came back with no indication of nerve or muscle damage. My MRI’s showed nothing besides bulging disks in my lower back, which could explain back pain. Like everyone, the neurologist was stumped.
My uncle at the time worked for NYS department of health, specializing in heavy metal toxicity. He suggested that I had testing done to determine if my condition was related to heavy metal poisoning. After a 24-hour urine sample, I awaited the results. One week later I received a phone call, it was someone from the state wanting to speak to me regarding my test results. He informed me that my results were forwarded to their department. I had tested positive for toxic levels of mercury and arsenic. He informed me that the average mercury level is <10 ng/Ml, 10 being high for someone who consumes fish on a daily basis. I have never been a huge fan of sea food, scarcely eating it. He said my levels came back at 55 ng/Ml. He said he’s never heard of anyone having levels this elevated. I started describing my symptoms and the reason I had the testing done. He said he wasn’t sure what the effects of mercury poisoning were, he only called to provide me results. He said to call my doctor to make a follow up appointment. I researched mercury and arsenic poisoning, which did cause symptoms similar to what I was experiencing. I started becoming paranoid that someone was poisoning me. Roughly 3-4 weeks later I had a different type of testing done for heavy metals. I had my feces and blood tested. This time the results were normal. My neurologist ruled the first test a false positive.
Even months later returning to work was out of the question. The apartment I lived in was tiny. I had a wheelchair I used while doing dishes and preparing meals, granted I had the energy for it. My friends at first were very supportive, would go grocery shopping for me without asking, until it got old. My roommate was sick of me not working, not being
happy, or doing anything productive. She kicked me out, which was OK because financially I wouldn’t have been able to stay much longer. I was forced to move home. I began to fall into a depression over time, not knowing what was wrong with me. I isolated myself from friends, talking less when I saw them because I was distracted by how much pain I was in.
My primary care doctor suggested seeing a chiropractor to alleviate some of my back pain. The first couple visits at the chiropractor was temporarily relieving, by temporarily I mean until I left the office and made it to my car. My spine began to feel very stiff. I constantly felt the need to crack my back to be comfortable. I went for a few more sessions, the last one he had me lay face down on two soft bricks one below my shoulders and the other at my hips. By the time he came back in the room I could not move. I tried to get up I was in immense pain and it felt like I couldn’t move my back. The stiffness I experienced that day has been present ever since.
I started seeing a rheumatologist in early 2012. I was being treated by the Physician’s Assistant (PA). I would see the doctor once out of 5-6 visits. The PA diagnosed me with myofascial pain syndrome. He specialized in trigger point injection shots and steroid injections. He had me realize the lower back pain was in part attributed to inflammation of my SI joints. Every six months I would receive 30+ trigger point injection shots done in my lower back to upper buttocks done at one time. The same day I would receive steroid injections in my left SI joint, sometimes the right side as well. After receiving the injections, it was like I had an entirely new body. There was no sensitivity around my hips and lower back, which just hours’ prior I felt like I was plowed by a mac truck. My pants were comfortable around my waist. After responding positively to SI injections, I was diagnosed with sacroiliitis, which is essentially inflammation of the SI joints. I began taking gabapentin and trials of many drugs at the time for pain management. The one that worked the best, that I used long-term was 50mg lyrica along with muscle relaxers and hydrocodone. Eventually, after a couple of series of injections I was able to lose the cane. I also attended more sessions of physical therapy.
By fall of 2012 the bulk of my symptoms went into remission. I was walking better, still easily fatigued, sleep deprived, mild back pain, etc. I was able to function and have a social life and keep up with others my age again. I was back to hiking, walking, and being as active as my body allowed. I re-enrolled in college and even held a physically demanding job until I was offered employment with the state of New York. Throughout time, I would experience mild spells of pain. Since early on doctors often referred to this as fibromyalgia. The diagnosis of only fibromyalgia was never convincing enough for me. I felt as if physicians were clueless as to what so going on but could slap a vague label on it so I would not ask another question. I’ve never heard of a fibro patient walk around with a cane, or in a wheelchair. I know many of them and had conversations regarding their severity of pain. I concluded compared to most we were not even on the same scale. I stopped all antidepressants and antipsychotics because I didn’t like how they made me feel like I had no personality. I was off all medications besides lyrica.
Due to a pain flare my doctor suggested increasing my dose of lyrica to 75mg. After a month or so on the higher dose of lyrica I started noticing a shift in my mood. I started to feel panicked over mild situations, anything on television frightened me to watch, I was having bouts of crying for no reason. I lost the ability to hold conversation. I felt like I couldn’t think for myself. When I first heard suicidal thoughts are possible side effects of medication, I thought that must be an excuse for someone who is depressed. I never imagined a medication could cause such disturbed thoughts or actions. I was highly mistaken. Terrified, every minute I felt as if I was going to get up and harm myself without having any control over my own actions. I had vivid images playing in my head like clips from horror films. Lucidly walking into my kitchen and killing myself in 50 different ways, frantically flashing before my eyes. Scenes slitting my throat, my arms, and hanging myself. The disturbing thoughts quickly became obsessive and ruled my life. I could not compose myself. I never wanted to leave work for the fear of being home alone, trapped in my possessed mind would kill me. I began seeing my psychiatrist again who put me on more drugs that did not help, if anything made it worse. I said to her I think it’s lyrica, I read about such side effects. My dose of lyrica was decreased to 25mg. Progressively over the course of months I recovered from the state of mind I was in. I once again removed myself from every medication I was on besides the lyrica. I liked my job and made a lot of new friends. I got back into hobbies and artwork. I thought whatever was wrong with me had passed. I was ready to take my life back.
Mid 2013, there was a routine fire drill at work. I exited the building with roughly 800 other employees. We all gathered in the surrounding parking lots for about 30 minutes until we could reenter the building. I felt fine that morning. Everyone was lined up awaiting entrance to the building. It was timely considering the security guards must ensure everyone has their badges to enter the building. As I was standing in line my legs suddenly turned weak. I was in conversation with co-workers. I took a few steps to my right and nonchalantly held on to the railing. The familiar feeling of weakness was easing itself throughout my legs; I began to tremble. I attempted to move in with the line, but I failed to keep up. My legs were shaking uncontrollably. I could barely take another step. I was surrounded by a group of my friends who were co-workers, new supervisors, and acquaintances from all parts of the building, none were aware of my prior health history. They watched as I took every last ounce of energy I had and pressed my back up against the wall of the foyer. In front of hundreds of people, I held my head down as my legs trembled uncontrollably. I’ll never forget the look on my friends faces, confused and in shock, asking if I was OK. I ensured I was fine. I waited out the tremors after a couple of minutes my legs calmed down. I started walking to my work location, which was located next to the loading dock of the building, a short walk from where I had been standing. There were pallets stacked high of office equipment. My calf muscles began tightening, again tremors started in my legs. I stood facing the pallet, holding on to it, attempting to compose myself before I had to make an entrance in front of a room full of coworkers, who had 100’s of questions. At that moment my hopes fell apart. I sensed what was in my near future. I fought it for weeks, having episodes of tremors, and intensive pain in my legs and lower back.
I was on a rotational team at work, four to five months out of the year I would spend processing paper filed documents in a mail room type setting. I would then rotate back to the call center where I worked the remainder of the year. I enjoyed each work assignment and was phenomenal at both.
My symptoms started worsening, it was different from the first time. I began experiencing extreme brain fog, I could no longer concentrate, phone calls that took me 2 minutes to resolve were taking me 20. I was forgetting what I was doing when looking into people’s accounts. The same when I walked into a room. I developed mild slurred speech, vertigo, nausea, vomiting, and episodes of blurred vision. My back pain worsened, and I began developing severe neck pain and stiffness. I started encountering flares of cramping pain and/or numbness in my hands. I would lose feeling in my index and pinky fingers, sometimes even my entire hand. New pain evoked in smaller joints involving my jaw, ankles, and heels of my feet. I began having reoccurring episodes of chest pain.
I couldn’t hide it for much longer, it began becoming too painful to sit at a desk for eight hours. My boss, who was an older gentleman with a history of back problems and spinal fusions understood where I was coming from. He never had a problem with me leaving early on the days I couldn’t manage. He also understood that I had doctor appointments, sometimes more than one day a week. He told me he respected me because regardless of how I felt, I would still be there on time and give it full effort. He said I came in, did my work without any questions and went home. To him that was the best type of employee, unfortunately he doesn’t get enough time to get to know them because they are independent and never have questions. Working in a call center supervisor had the option to listen into employee’s phone conversations. My supervisor who was seated directly behind my cubical and just about everyone around me started becoming aware of the situation. After listening into a disastrous phone call, my supervisor pulled me aside into a conference room to talk. He said I can’t watch you do this any longer, I want to help you, where in the building would be best for you to work? After an in-depth, heartfelt discussion, he advised me to speak to management about reassignment.
I was permanently assigned to the other unit I worked in part of the year. I would no longer rotate to the phones. My time there was anything but easy. I was scrutinized that I faked my disability to be removed from the phones. My hands hurt and lost feeling in them on a daily basis from tediously opening envelope and straightening paper. I had to ask every day to do something not as repetitious. This was looked at as an excuse to get me removed from tedious work assignments. With no physical evidence that I was chronically ill, it was assumed that I didn’t volunteer to remove the mail crates off the carts or operate the mail slitter because I was lazy. In reality I couldn’t lift anything over 10lbs without straining my back and could only stand for short intervals. I spoke to my supervisors everyday about switching tasks, the following day it was like the conversation never occurred and I was assigned the same tasks. I had no choice but to obtain reasonable accommodations, which meant by law my employer had to follow my restrictions that my doctor had provided in writing. One included limiting typing to 30 minute intervals throughout the day. Management disregarded these accommodations most of the time and gave me heavy workloads, that only included typing for hours on end. I had my supervisors hold these accommodations against me, as if I was seeking the easy way out, and these were choices I had made.
Emergency visits and doctor appointments ruled my life once again. More trials of medications, put through the ringer with my neurologist, again to be told there’s no physical evidence to pin point what is going on. I demanded that my neurologist conduct a lumbar puncture. It was pretty much the only test they hadn’t done. He refused, advising me it was too risky and that if it was MS they would know already from MRI’s. I had enough of these appointments. Thousands of dollars poured into these doctor’s wallets, leaving me broke and broken. I could barely stay on top of paying co-pays and medications and am still currently paying off years of medical debt. I was beyond frustrated. I demanded that my rheumatologist refer me to a well-known MS doctor in the upstate area, who had a waiting list and were currently not accepting new patients or convince my neurologist to have me get a lumbar puncture. I was over receiving injection after injection with chirpy side talk about everyday life from the nurse practitioner. I allowed this to happen for too long without ever having any other tests done and accepting my condition was solely caused by SI pain.
During my initial visits at the rheumatologist the PA mentioned the possibility of ankylosing spondylitis (AS) due to SI relief after steroid injections. He conducted lab work for the gene, HLA-B27, it came back negative. After my results came back negative for the gene, the topic was never discussed again. The few times I did see the doctor, he would undermine the PA, telling me the opposite. He assured me that nothing was wrong besides fibromyalgia, for I had no indication of inflammation in my lab work. He also expressed he was not a fan of me receiving trigger point injections or steroids because I was too young to become dependent on them.
One day at work I received a call back from the neurologist’s office that I was dying to get into. The woman on the phone explained to me that I needed to have a lumbar puncture preformed to see this doctor because he only specializes in MS patients and has a long waiting list. I argued that seems like an odd necessity to see a doctor. I explained that I’ve had extensive testing done, and simply wanted another opinion. She stuck to her word and stated it was the only option if I wanted to be seen. I forwarded the message to my neurologist; the new doctor will see me if I have the lumbar puncture performed. There was no communication between doctors, just a lousy slip up from the receptionist at the office. I did not find out until after enduring hell on earth for close to a month, that it was not mandatory to have the procedure done to see the neurologist, those were the doctor’s words.
My procedure was to be done at 7am I was to arrive by 6am. I was over tired and forgot I was supposed to fast prior to the procedure. I ate a half of breakfast sandwich that morning before I thought of it. My test was delayed an hour due to this, and they were not happy. The procedure went fine. It was over quick. I was entirely numb and felt a ton of pressure on my spine during the procedure. After words was the issue. Once I was in recovery my back was incredibly sore, and I developed a migraine, known as a spinal headache. I never experienced a migraine in my life. I grew up with cluster headaches. I thought they were similar. This was excruciating and unbearable. I ended up staying at the hospital overnight, so they could monitor me. After my mother brought me back to her house where I stayed in one spot with the blankets pulled up over my head, so nauseous. The slightest light or sound pierced my skull. I couldn’t keep anything down, not even water. I couldn’t move my entire body was in the worst pain I had ever encountered. That night I was back in the ER, and every other night for a week straight.
The second day of this I just wanted to be on my couch with my two cats and sleep it all off. After we left the hospital I had my mom drive me home, so I could do just that. Again, came another overbearing wave of nausea. I was fighting between throwing up and giving my head time to rest before it exploded from pain. I was dry heaving to the point I couldn’t catch my breath. I was helpless and began to panic. Luckily, my phone was near me. I called my mom, I couldn’t get any words out. All I was capable of doing was dry heaving. If I moved I felt like I would throw up, if I talked, heard noise, or saw light it would trigger it all. I had lost all ability to move. My mom called the ER, they instructed her to call an ambulance immediately. I thought about the most recent itemized statement from my last visit being $2,000. It took everything I had in me to attempt to stand. My poor mother doing most of the work propping me up. It was below 0° that day I had a high fever. I was wrapped in a blanket nearly collapsing on my way to the truck, my mom helping me. I got into my mom’s truck and grabbed the first bag I saw and started dry heaving, I had nothing left in me to spit up. I was struggling to breathe in between. My mom left her keys inside she said she was just going to call an ambulance. I spit out the words “no. I made it this far.” I was informed that I had a bad reaction to the procedure because the doctor used too large of a needle. They had to do an epidural blood patch procedure to clot the hole in my spinal cord in hopes to relieve the spinal headache.
Since the lumbar puncture I’ve experienced a drastic increase in autoimmune issues. After the epidural blood patch procedure, I had a large adhesive clear bandage on my back I peeled off before I left the hospital. The next day my entire back was covered in an itchy rash that looked like I had enlarged goose bumps all over my back. Which turned out to be a reaction to the adhesive. Since then all electrode pads and bandages cause skin irritation. At this time, I also began breaking out in rashes from different foods and laundry detergents. I became extremely sensitive to the sun, breaking out in a heat rash while outdoors. I also began experiencing facial pain on the left side of my nose. The pain feels as if I were punched in the nose, the bridge of my nose turns red, the pain makes my eyes sensitive and causes the onset of migraines. Facial pain will come in periods of days to weeks at a time. It will last from morning till night, nothing that I have tried relieves the pain.
Ok, now that I’ve endured hell, I could make my doctor’s appointment with this man who’s supposedly magnificent and was literally my last resort in Albany. My appointment went well; my lumbar puncture was negative. Although he wanted to do tests and repeat all of my MRI’s because the other ones he said were very hard to read, he wanted me to go under a T3 scope, which is stronger. I had all of my MRI’s repeated, more lab work, cognitive testing, and an EEG preformed. I anticipated my next appointment, confident they must have discovered a cause this time.
I saw my rheumatologist around the time, the actual doctor, not PA. He reviewed my notes from the neurologist in front of me- his facial expressions turned serious. He looked at me and asked, you understand what they think you have, right? I said what do you mean? He said they are testing you for Luegarigs disease (ALS). This sent me into a panic, the neurologist appointment couldn’t come soon enough. To my surprise the appointment that day was with the PA, not the neurologist, I was bummed because if the results were conclusive the doctor would be providing me the diagnosis. The PA was excited she immediately blurted they found something, as if she shared my excitement of solving this case of mystery diagnosis. I was astonished, although she was hesitant on proving me information as to what they found. She said there is a pannus formation located between my C1 and C2 vertebrae, which is the area of the neck at base of the skull. She didn’t have knowledge of what pannus really was and mentioned she shouldn’t have told me. She ensured she was going to contact my rheumatologist and have him give me the proper diagnosis. The appointment was vague. I left the office puzzled and discontent. I went back to work in attempt to not over think things. I didn’t want to look it up what the hell a pannus was. A formation, is this cancer? I had so many questions, why didn’t the doctor see me? The PA stated the rheumatologist should have found it, like it’s a blame game. I went home and did my research. Pannus is normal in RA patients, RA sounded suiting although my inflammation markers never indicate inflammation. I made an emergency appointment with my rheumatologist. I stated that I wanted to see the doctor.
When I got to the rheumatologist’s office I was called back and awaited the doctor’s presence. Unexpectedly the PA entered the room. Calm and casual as usual, like this was normal visit. I brought my mom with me, it was her first time attending a rheumatology visit with me. The PA asked if I was going to get more injections done that day. I said no, I had the neurologist fax the results of my MRI’s, I thought you would have reviewed them. I requested to see the doctor today specifically for that reason. I told him I kept going there for injections, but he can never tell me what is wrong. Now I find out I have something wrong and it was never caught. He stumbled on his words, I could tell I caught him off guard. He started looking into my file and reading the report to himself. He said, “pannus formation, this doesn’t mean anything. Who told you this?” I told him the neurologists office. Which then proceeded a phone battle between the two offices.. The PA got up and left the room every 2 minutes during my visit to google pannus formation. He could not provide me with any information of value. I called the neurologists office immediately after I left and demanded an appointment with the doctor.
A few days later they got me in. The doctor’s words, right off the bat were, “I cannot treat you for your RA”. Relieved, I mentioned to him the comment my rheumatologist had made regarding ALS. He found it rather funny, he said if you had ALS, and you were in a wheelchair years prior to this, would be impossible. You only go downhill with ALS. While seeing this doctor, he recommended to stop taking Lyrica. He blamed cognitive impairment on the medication. I was prescribed baclofen and low dose naltrexone. I did not want to return to my rheumatologist because I felt the office had let me down. I was referred to a new one in Albany. Although, like most doctor office’s in Albany, they had a two-month waiting list.
My hands had started to lose feeling more often, my vertigo was worsening, I was constantly nauseous, and had no appetite. My neck became so stiff that I could barely turn my head. Harassment over my disability by my supervisor continued at work. Because of memory loss I was denied the privilege to learn new tasks. I was constantly in meetings with the union over unfair treatment and discrimination. From March to April each year I worked 80-hour weeks. I overworked myself to compensate for doing nothing when I got home or on my weekends. I was always behind on chores such as dishes, taking out the trash, doing laundry, etc. Simple tasks a healthy person doesn’t think twice about having to conserve energy to get them done. I would get out of work at 7pm and sleep up until 5am to return to work at 7 without eating dinner. I started to fall into another depressive state with nothing being done. In a few months’ time I dropped from 120 to 102lbs, being my all-time lowest. I disgusted myself. I turned cold and miserable.
Eventually, I bottomed out. I went to the ER because I displayed almost every symptom spinal cord compression. I couldn’t feel my hands; I was consecutively dropping stuff. I left from work and went to the ER before noon. I ended up being admitted after conducting tests all day they found nothing. I needed the waiting process of seeing rheumatology expedited. The doctor urged me to stay overnight and have the new rheumatologist to come to the hospital the following morning. I was told it is not very likely that a doctor will show up on a Saturday morning, but they wanted to monitor my symptoms regardless.
At 6 am the following morning I was awaken by the rheumatologist, who was not so thrilled to be there. Things got off to a rough start. He first told me without asking any questions of my history that I did not have RA and if so didn’t know why I would be at the hospital. Second, he said I had a lot of nerve going to the emergency room on the weekend and expecting a doctor to come in on a Saturday morning to see me. This put me in a rage, I was shouting to explain myself, that no one knows what it is. He turned around and began exiting the room, no longer willing to take me on a patient. A second after he walked out the door of my room, my mom had walked in, she had just arrived at the hospital. I told her not to let him leave, that it was the doctor and he said he’s not going to help. She chased after him and explained, we’re running out of options. He came back in the room and I apologized. It was 6am, I was running on no sleep and was beyond stressed out. We made amends and he said he was willing to see me that Monday and try to wrap his head around things. I gave him all my medical records. He was honest about not being able to look too far into things until after my appointment. In the mean time I printed out what is an inch-thick novel of blood work. I collected all my X-rays and lab results.
This doctor concluded the diagnosis of psoriatic arthritis. I have always had dry patches on my scalp and sometimes on my elbows as a child, although it’s mostly cleared up now. He wanted me to follow-up with dermatology for their opinion of psoriasis and a pain management doctor. The dermatologist at the time said I have slight dry skin but he wouldn’t consider it to be psoriasis and to pass the word to my doctor maybe psoriatic arthritis is not the answer. Since my first onset of symptoms I grew small wart like bumps on my hands that would come and go. I also had a large wart develop on my knee that I had removed that day. While on my trip to the Bahamas I had intense sunburn on my back that made me develop freckles all over my shoulders. He removed a larger dark skin spot I had gotten from the sunburn to test for melanoma because it runs in my family. It was benign. Regardless of the psoriasis information the rheumatologist wanted to begin treatment with Humira. He said I have some sort of seronegative spondyloarthropathy and it is all treated the same way with TNF inhibitors.
I was on Humira for three months. Twenty minutes after the last injection I administered myself I started to feel off. Without over thinking it I went to work. I started becoming very light-headed and began having trouble breathing. I kept feeling as if I was going to faint. My face was blotchy and pale. My skin was itchy. I was experiencing on and off chest pain. I called my doctor when they first opened and explained what was going on. I was told to go to the emergency room. I left work and drove myself to the ER. They performed EKG and had me hooked to monitors and an IV. I was there late that afternoon, until they said there was nothing more they could do and believed it was an allergic reaction to the medication. Days later I started experiencing vaginal bleeding, my period was nowhere close. I assumed it was due to hormone changes from the medication. I went to my OBGYN she put me on birth control and progesterone to try to regulate my hormones. I bled for over two months straight, I had ultrasounds and extensive testing done, each result coming back normal. I was told if the problem doesn’t subside the next step was to have the Intrauterine Device, which is a form of birth control where a T shaped device inserted in the uterus making it so you do not have menstrual bleeding for a year. I was not so willing to do that after reading about side effects. I was put on many different medications, there was no quick fix.
I began seeing a pain management doctor, over the course of a month I had a cervical radial disk block done in my neck which is essentially 6 injections in my neck and steroid injections in both SI joints. After the series of procedures, I had a follow-up appointment with the pain management specialist. I first saw the PA who I explained to I have wide-spread chronic pain, my neck and back are improved greatly from the procedures but I still can’t function normally with the pain that I am in. She pulled up my lab results and explained that THC was positive in my blood, therefore she cannot administer any medication, she had made it seem as if I was an addict solely in their office for controlled substances. She then offered an appointment to have my nerve endings burnt off in my neck. I was out the door before the doctor even came in and have not returned since. With being sent every which way I started to investigate prestige’s medical facilities outside of Albany.
I had two last appointments with my neurologist, the first appointment I brought up traveling for help, his tone changed. I was brushed off that day. The next appointment my mom was with me the doctor was quite rude when the discussion of traveling came up again. I mentioned The Mayo clinic he asked me if I ever heard the expression, “hold the Mayo?” He said that Mayo Clinic was not all hyped up as it really is. He explained they will do all the same testing and have the same outcome there. My mom mentioned what about Boston? He boasted in a foul tone, “Oh, well you said you’re going to Mayo Clinic. If you wanted to go to Boston I could have sent you to a doctor in Boston.” The rest of the appointment did not go over well. He said he will no longer be treating me after this visit. I was left on this trial drug with no form of a refill and no other doctor to prescribe it.
I began attempting to get into Mayo Clinic. After applying online numerous times I was repeatedly denied. How can someone whose endured all of this be denied to Mayo Clinic? When you call there, you speak to someone in a call center so the issue was no one was relaying the message, and the doctors were only reviewing my lab and results which showed no evidence of anything. I had nothing to go on unless someone listened to me. After months of attempting to get through I had an appointment at the main Mayo Clinic in Rochester, MN. The only department willing to take me on was the allergy unit. As risky as it was that was my foot in the door. If I went there was a chance I could see other doctors that week. I had no idea how it worked there but I figured I needed to try.
I took a week off of work my mother and I flew out to Minneapolis late November, 2015. I had my first appointment with the allergist. The doctor was taken back as I went down my never-ending history, which sadly had only been the last 4 years of my life. He said, as you know you are in the wrong area, but I can be of help. He had me go through my top 5 complaints and we made a list of what types of doctors I wanted to see while I was there. He said once we did that he would have his secretary to determine if there were appointments available for the week I was in town. We decided I would see rheumatology, neurology, dermatology, a spine specialist, oncology and gastroenterology. He gave the information to his receptionist, after a few minutes’ time she called me to the front desk to receive my itinerary, she said unfortunately there were no openings for any of the doctors for a couple of months, besides the dermatologist, and the allergist I saw today. It was an optional visit to see the allergist on my last day there to summarize the visits. The receptionist asked if I ever been to Mayo before and knew how their system worked. I did not. She explained that I could go to any of the departments I had future appointments with and check in with the front desk to sit as a “checker” meaning if someone canceled or didn’t show up, I would get their appointment. They also prioritize the appointments by how far the patients traveled. Long story short my luck started to change when I was able to see all six specialists within the 5 days there.
I had many tests, labs and X-rays performed, many were repeated tests I had done at home already. I made it to day 4 without any answers, except learning that I was severely vitamin D deficient, which I could have assumed, seeing how I rarely saw the light of day. Day five was the rheumatology appointment, saved the best for last. The rheumatologist looked at my X-rays I had taken while I was there, he showed me them on a screen and went inch by inch telling me the story of my spine. I learned more about myself than any doctor ever told me with only seeing me for me for minutes. He showed me my spine informing me and pointing out where I have spina bifida, in the womb the top of my spinal column never fully developed. He said it’s not on the report by the radiologists, but either way it’s not harmful just an interesting fact. He then showed me the degeneration of my lumbar spine, also not noted by the radiologist. Pannus is my C spine was minimal, he was not concerned and this time the radiologists also left that from the report. He saved the evidence for last, had me stretch, listened to my shoulders and knees grind. Listened to my back pop with bending. Had me stand straight against the door to determine if my spine is hunched. He then began telling me a story, an old wives’ tale as he said. Decades ago there was a boat who traveled overseas, the people on this boat were plagued with illness, whether it was something they all ate, or came in contact with. Years later many people who were on the ship complained of back pain and stiffness, there were labs done on those who came forth. Data was collected on this group of individuals. A majority of the group tested positive for HLA-B27 yet others presented the same symptoms without testing positive. All affected were said to have AS, with and without the gene. Moral to the story this has always been in me, but never prominent until the GI infections I had during mono and the virus made the disease prominent. We discussed my childhood; my immune system had always been compromised. I have a history of chronic ear infections, and many contractions of strep throat. Growing up I was exposed to black mold in my house causing a chronic dry cough. We discussed how I always struggled having good posture and was never able to sit Indian style for more than a few minutes without my hips feeling uncomfortable. My hip bones popped often as a child. He addressed all of my concerns and answered all the questions that no one could in years.
I had the weekend free of appointments. Monday morning, I had an endoscopy scheduled, directly after my procedure we would return home to NY. Endoscopy went smoothly, biopsies were done and later returned negative for crohn’s disease, h pylori, or any other complications. The day following the procedure I began having intense chest pain and shortness of breath, which I had experienced in the past and was treated for with xanax, cardiologists explained that I was a nervous wreck due to my health, which had made sense. I began seeing a gasteroentologist at home. I had two episodes of blood in my stool since my return home from Mayo. I had lost my appetite months prior and had chronic diarrhea since my first onset of symptoms in 2010. I was still constantly nauseous and underweight. My doctor told me that he suspected I had cancer. I was then sent for a colonoscopy, which was also inclusive. After I had a gastric emptying study done to rule out conditions such as gastroparesis. Those results were also normal. I was diagnosed with IBS but am still unsure if there is an underlying cause.
Since my return home from the Mayo Clinic I still had a very difficult time seeking a doctor to begin treatment. My doctor at Mayo wrote his recommendations of treatment medications specifically stating Methotrexate. I saw three different rheumatologist who disagreed with his diagnosis and refused to treat me. All because the rheumatologist at Mayo wrote seronegative arthritis and not specifically AS in his notes. I went from December 2015 to March 2016 without getting help and was off of all medication. Now that I had the answers of what I can do to improve my condition I began altering my diet eliminating carbs, dairy, processed foods, sugar, nuts, seeds, and beans. The last doctor I saw in Albany gave me the name of a rheumatologist in NYC who had AS listed as one of his specialties on his website. When I saw this doctor, he was also skeptical of the diagnosis at first. Hesitant to confirm a diagnosis after three doctors recently weren’t convinced of one man’s opinion, that was not properly documented. I explained that the last three doctors didn’t run tests or look at my labs they based their opinions solely from other people’s documents on my file instead of listening to me. The doctor was very kind and willing to help. He did research and we exchanged many phone conversations. Eventually he called me and said he would like to start me on enbrel.
June of 2016, after being laid off from my job a month prior, I had the opportunity to attend a three-week pain management rehab at Mayo Clinic. The program was highly recommended by the specialists I saw while I was there in November. By this time my insurance finally approved the authorization of enbrel. I had the medication delivered to a pharmacy in MN. I planned on starting the medication while I was participating in the program. Once I began the program the pharmacists and doctors there recommended I did not start Enbrel until I consult with my rheumatologist at Mayo. They said according to his note my doctor disregarded his treatment recommendations. During the program, one of the head doctors told me that I did not have AS, because it was not included in the rheumatologist from Mayo clinic write-up. I explained that this is exactly how every one of my appointments had been since my diagnosis, so I will not take her comment to heart. I informed her that AS is a form of seronegative arthritis. A chronic health condition should not be judged on the simplicity of a doctors write up. I had traveled half way across the United States after everything I had been through to reach this conclusion. Frustrated, I was again stuck in limbo, dealing with doctors who didn’t have the time and who were more eager to put me down instead of offering help.
The program at Mayo Clinic was beneficial and I would highly recommend to anyone suffering from chronic pain. The program was based on cognitive behavioral therapy. It offered a positive outlook of chronic conditions and allowed patients to become aware of actions done in response to chronic pain. They worked with us one on one to find a physical therapy regimen that catered to our specific conditions, to improve overall stamina and endurance. This was a rare opportunity to meet like-minded, chronically ill individuals. Being in the company of others who fought daily and hearing their stories was the most beneficial part for me. The program inspired me to share my hardships. It also removed me from the negative mindset I had been trapped in for years. I learned how to manage and better my situation, no longer allowing chronic illness to define who I am.
During the program I was repeatedly trying to get in touch with my rheumatologist at Mayo Clinic. He was booked for two months in advanced. I sent several emails that went unanswered to his care team, because he was over booked. After completion of the program I had decided to lengthen my stay to see my rheumatologist at Mayo Clinic to confirm my diagnosis in writing and to have his input on treatment recommendations. The day after I completed the program I sat as a checker at the rheumatology department. To my surprise, within 20 minutes I was called to the front desk and given an appointment for the following day. The doctor was apologetic that he did not get back to me sooner and was unaware that his note had caused so any issues and delays in treatment. He examined more recent X-rays and showed me how the proof is right here, it may not be in the write-up from the radiologists, but it is in fact there. He told me if ever confronted again to physically point out the inflammation of the SI joints myself. Doctors are quick to get you in and out of the office and most cases don’t have the time or knowledge to interpret imaging themselves. He said that he didn’t want to make me wait any longer, since enbrel was approved by my insurance and I had it now I should start it. The medication was delivered to the wrong pharmacy while I was in MN and sat around for days before I was able to successfully track it down. It was unrefrigerated for days because the distributor of the medication never notified the pharmacy that it was being mailed. To be safe the doctor told me to order more when I got back to NY. He also started me on sulfasalazine which is another TNF inhibitor that delays the damaging of joints.
Once I returned to NY, I began taking sulfasalazine. I spent weeks attempting to have enbrel refilled. A week after my first phone call to CVS Caremark pharmacy I received a phone call informing me that it could not be refilled. My health insurance was no longer active. Out of pocket the medication would cost thousands of dollars. I enrolled in a health insurance plan offered through my step fathers retirement through NYS called the COBRA plan. The plan allowed me to have health insurance for over $600 a month. I waited over six weeks for the insurance company to send me my insurance number. Once I received my health insurance information I called to have enbrel mailed to me. After hours on the phone I was denied the medication once again because I had new insurance. My doctor’s office had to approve the authorization again. This process took weeks. I returned home from the Mayo Clinic in late July, today is late October and I finally have the medication in my possession and plan on starting it this week.
There is an importance to sharing my story in such detail. There are individuals currently struggling daily to seek proper medical attention, accurate diagnosis, and treatment. In most cases the diagnosis of AS is delayed, for no two cases of the disease present the same symptoms. The average time frame for diagnosis is typically between 6 to 11 years. My experience with ankylosing spondylitis has not been by the book. It has caused havoc throughout my entire body. It has taken my friends, sanity, and physical strength. It has made me put my entire life on hold for far too long. I am a member of multiple online support groups for AS. I joined them after my diagnosis in 2015. Since then I have read hundreds of questions and comments pertaining to symptoms people experienced throughout the course of the disease that are ‘not typical’ for AS. These questions receive hundreds of responses from others that have experienced similar complaints. Most of the symptoms I’ve experienced health care professionals considered bizarre for the disease and were usually blamed on an underlying condition. It turns out, after hearing others experiences most of the symptoms aren’t so unheard of after all. Doctors can learn more from individuals with the disease than they can find in a textbook. If you have put up a battle with this disease I encourage you to share your hardships. Together we need to make our voices heard to educate our healthcare professionals and the general population. We need to eliminate the delay in diagnosis and shed light that AS is much, much more than back pain.