Monday, July 21, 2014

My "HTF did you get to this point?" Story

This is a hard story for me to tell. Honestly, it wasn't up until a few months ago that I could tell it to doctors, friends or family without getting teary eyed. Naturally it's gotten easier to tell it over time as I've grown more confident with my progress, but I'm not going to lie, I would sob initially and couldn't even get through it without the possibility of a total mental breakdown. It's not easy. Even just thinking about rehashing the whole thing makes my heart pace a little more and to be honest, I think I've repressed so much from the entire experience that there are just full months of things I really have no recollection of.

When things have gotten bad, I would periodically write emails and Word docs to myself to vent or look through old emails trying to recover what the hell even happened and how. The whole thing happened so fast. Anyway, I digress. Here goes nothing…

DISCLAIMER:  For the record, I hope you people read this in small increments. This will easily be the longest thing I ever post. For the sake of your sanity and mine, I tried to include really the most crucial aspects of my pain to the story. Everything else will fall into another blog post at a later time. I hope this is helpful to everyone! 

On February 24th, 2013, my life changed forever. Prior to this day, I felt I had already overcome several other more minor obstacles: working my ass off the point of panic attacks at 3 am in the bathroom, (crying on the floor, texting my mom) due to the very heavy 24 credit class schedule I was taking at FIT (Fashion Institute of Technology in New York City), interning almost full time almost every semester and styling photoshoots whenever I could fit them in. I couldn't help it, I was an opportunistic person and a bit of a workaholic. For the record, I loved what I did/do. Naturally, I am curious in nearly everything but I could not ever truly imagine myself out of the fashion industry. 

A year abroad in Florence. This photo was taken by a close friend on a spontaneous day trip to Cortona. 

Co-styling Gisele Bundchen for Harpers Bazaar Brasil

Graduation day with one of my close friends from school, Aisha.

After having the time of my life in Italy for a year and having to return to real life, senior year was not kind to me.  After a short-lived relationship that ended as quickly as it started, really unusual medical issues arose. I blame stress. August 2011 of my senior year was my first encounter with spasms and muscle pain on a much smaller scale. I was nearly immobile for two weeks and shockingly, with the help of some muscle relaxants that would never do a damn thing now; I was miraculously better. 

About a month later and a month into school, strangeness ensued. Out of the blue, I was having really intense vertigo, balance problems, drenched in sweat from walking a block (I am not a sweater.), ringing in my ears and intense nausea--nausea to the point that just standing up would cause so much dizziness that I would throw up kind nausea. Shortly after, I was diagnosed with labrinthitis. This lasted almost 6 months and the idea of potentially having to leave school was a real possibility. I had to go to vestibular rehab (aka PT for clumsy people) and it finally went away on its own. A few weeks after that, I was scheduled to have three separate surgeries on my nose--septoplasty, turboplasty and rhinoplasty after finding out from an ENT that I had a double deviated septum. (I didn't even know that was possible, but I was not able to breathe out of my nose at all and got bad headaches.) I had two doctors do three surgeries all at one time and luckily, it went perfectly. At this point, I was well into the second semester of my senior year and, like most college seniors, frantically searching for jobs. After what seemed like forever and a month after graduating, I landed my dream job doing product development, specializing in textiles in the home department of a major, internationally-known designer. 

For all the nay-sayers out there who are under the opinion that I "was just trying to get out of my job"--no. Let me clarify that my job was wonderful. It was everything I wanted to be doing. I genuinely loved my coworkers and my work. I considered myself "one of the lucky ones" to be fortunate enough to get a good, challenging job right out of school doing what I actually studied. 

Unfortunately, in February 2013, I had hit an unfortunate rough patch with my supervisor due to serious miscommunications. Two weeks later, I landed myself in the ICU Emergency Care Unit of Hospital of Joint Diseases at NYU. 

Like the first time I got muscle spasms, I awoke on a Sunday morning and could not move my neck to either side without a shooting pain down my left shoulder. Like the first time, I went in right away to my PCP (primary care physician) and he quickly alarmed me that my pain was much worse and much more strange than the first time. These pains were not casual spasms. He thought I could have a twisted vertebrae in my lower neck and wanted me to admit myself to the ER and get x-rays. 

I admitted myself and waited for what felt like hours. (Sitting was difficult.) Finally, they took me back but did nothing. The doctor on on-call barely even examined my neck and told me nothing was wrong with my neck but loaded me up with anti-inflammatories, multiple muscle relaxants and hardcore pain killers. Without knowing at the time my extensive and brand new list of drugs I'm allergic too, I naturally had a violent reaction from the drugs. Half comatose (not really, but basically) and alone, I sat in my little room half in tears trying the stomach the idea of a Saltine, attempting to coherently text my boss to explain why I would be missing work and watching the Oscars red carpet with a nurse who took pity on my soul . At 10 PM that night, they discharged me vomiting (literally vomiting as I left the hospital) with a whole new slew of scripts to get immediately. 

Drugged up, covered in Saltines crumbs, trying to take a happy ER selfie (which is an oxymoron).
A lot of the next month or so is kind of a blur to me to this day. The doctor at the ER said to follow up with a physiatrist (I linked this because at the time, I had no idea WTF a physiatrist was) and luckily, I formed odd but close relationships with the doctors that did all my nose surgeries. One of the two was good friends with the "best physiatrist in town". I took the first appointment my doctor connection could hook me up with. Two days later, Dr. Craig Antell quickly diagnosed me with a herniated disc in my lower neck within 5 minutes. (I linked him because he was great a doctor until he wasn't and people should know.) ((Foreshadowing.)) 

Dr. Antell had a game plan and owned his own practice with other physiatrists, pain specialists, chiropractors, PTs and worked daily with other specialists in his empire. (Hoping you sense the sarcasm.) Game plan: extensive x-rays and MRIs, blood tests, drugs, light chiropractic work and PT.  Dr. Antell was great because I had the "doctor connection" and he had resources with a decent beside manner--offering his email that he (and coworkers) nearly checked around the clock. Like most NY doctors that are told they are the "best in town", he tended to air on the side of arrogant and overconfident. Not. A. Good. Thing. Ironically, I did have a herniated disc in my neck, but it wasn't even close to being the source of my pain. Slowly over time, I was quickly ruining his perfect "bread and butter" prognosis, foiling the cut dry case of the classic herniated disc diagnosis. 

A month went by and nothing good was happening. A few sad attempts at work days later, I started getting spasms in my upper back, shoulders and pain radiating/shooting down each side of my spine. I was quickly advised into a work disability recommended by all the doctors at his clinic who were treating me and literally was not allowed to check my work email on disability (HR rule which meant I was not able to do any work from home.) I was dying. I am not the kind of person who can spend days on end in bed 24/7, especially in pain, knowing there's shit to get done. To this day, I still have all 5 seasons of Breaking Bad to thank for ailing my perpetual pain and boredom. After a few feeble attempts from the PTs and chiropractors in Dr. Antell's network, no one could touch my back. It just hurt too damn much. One PT even told me she felt like she was dealing with premature infants in the NICU. That is the level of severity my pain was at. 
A very odd contraption a PT put on my head. To this day, I don't think I could confidently tell you what the hell it was. 
With all of Dr. Antell's brightest ideas being a thing of the past, his last attempt was an epidural injection at the nape of my neck done by the pain specialist in his clinic. The epidural was, shocker, painful and not helpful…at all. (I hate needles and am ungodly squeamish.) Still, by mid-April it felt like my pain was worsening and spreading, and honestly, it scared the shit out of me. After being on medical disability for a little over a month, only obtaining my dream job for 8 months (which was now on the line) and trying not to panic, I went into see Dr. Antell for my usual several-times-a-week appointment. 

He sat me down and told me my poor little herniated disc was, like I said before, a "bread and butter" case. He explained to me that there was a simple formula to fixing it and that my progress (or lack there of) was no where close to where he wanted. He then told me he was friends with a doctor who was an internist but specialized in psychiatric trauma that caused legitimate physical pain. 

Are the dots connecting yet? Let me lay it out for you: this was doctor code for "I have no idea what the hell is wrong with you and I think that you may be potentially clinically insane, but you have no idea that that's a possibility. Also, I am too cocky and condescending to think that my diagnosis could be wrong or that there could in fact be anything else physically wrong with you." He told me he was worried that I could have underlying psychiatric trauma that I wasn't aware of and quickly discharged me. What?? (Fun fact: I had a very normal/happy childhood and have been in therapy now for 6 years--trust me. I would sense any "underlying psychiatric trauma" if I had any; I hadn't.) I cried. I was SO frustrated. I had no idea what was wrong with me, but I knew there was definitely something that was wrong and I knew I wasn't crazy. To top of it, after wasting 6 hours (between waiting and being thoroughly examined by a nearly retired doctor I had no patience for) SURPRISE! No trauma. 

This was a crucial point for me. Like I said, I was on disability for a little over a month from my job of, now, 9 months. It was the end of April, my lease was ending in June and I was very far away from figuring out what was wrong with me. Because my time at my job was so short, I felt it was almost a disservice dragging the company on and making my supervisor do all my work for me until I figured it out. I was at the point with my disability where my salary was about to stop until I returned to work again. Shortly, I wouldn't be able to afford my monthly $1550  rent for my pricey, but beautiful/perfect East Village apartment and who honestly knew if I could've been there for the next year when my lease restarted? (I couldn't.) All things considered, I had no choice but to leave my job due to medical issues. I cried a lot (again) and probably threw up a few times at the notion of having to leave my work, friends and a city that I loved to be back in my small hometown living with my parents. I was 23. I felt like I had no control over what was happening to me and all I could do was just sit there and watch all my hard work blow up in flames. 

May came and I had officially moved home to Pennsylvania. I don't usually trust chiropractors, but I had seen my go-to chiropractor at home who is always honest and upfront with me. He told me I just had severe back issues and he could fix me if I came in three times a week for a month. I thought "Ha, this is great! Finally, I will be over this and back to New York in no time!". Two weeks went by and again, I was sat down by the chiropractor and told that my back would "just spring right out of alignment" every time he realigned me and that there was nothing he could do but did in fact suggest seeing a few different kinds of specialists. He mentioned that he believed it could be something neurological, autoimmune, etc…which was something that had never occurred to me before because I was so preoccupied with my previous diagnosis.  Again, I was discharged due to a stumped professional and back to square one. 

In June, as my pain was continually increasing, I got an appointment with another pain specialist locally. I remember this specifically because he sat me down and said "You are in the beginning stages of entering the chronic pain world." Later in the appointment where I was no doubt crying again, he told that I had chronic myofascial pain--which I had never heard of in my life. It took me several minutes just to figure out how to spell it correctly on Google to search it and I didn't even know what fascia was. Anyway, he told me there 5 things I could do to help with my pain: 

1) Acupuncture (which I had already doing since I moved home and was 100% convinced it was crap.)  
2) Get a TENS Unit. (I had already been using one at the chiropractor. While it felt good, it was definitely not was going to be a "life changing" factor in fixing this. I am the proud owner of one though.) 
3) Meds (You get by now that, while continuing to try everything every doctor suggested, there was no luck in this department. Like I said in my first post, I have tried nearly 40 different types of drugs, all failing.) ((PHARMA companies---holla at me.)
4) Dry needling. (Terrifying.) 
5) Therapy (psychiatric). (Check. I was calling my wonderful New York therapist weekly.) 

He then alluded if none of these would help with my pain or even control it, well, welcome to chronic pain world! A sad world it was (is). 

Let's just do a little recap of where I am physically and mentally right now: 
  • crying pretty much everyday and alone most of the time (Parents work.)
  • severely depressed (hence ^) 
  • fucking exhausted/not sleeping 
  • existential crisis 
  • major difficulty concentrating (only had the mental capacity to handle shows like Spongebob Squarepants, Bob's Burgers and Family Guy, mostly just stared at the ceiling wondering how the fuck this all even happened) 
  • hadn't seen a friend or an attractive male (much less dated one) since February 

  • Seats and sitting are a joke at this point and a thing of the past. (I couldn't sit for more than 10 minutes at any given time.)
  • rapidly gaining weight and unruly (read as: hideous) stretch marks from lack of any mobility whatsoever and lots of mashed potatoes/ice cream for comfort 
  • pain was continuing to become more severe/expand to every inch of my back/shoulders/neck/sides
  • going to see a movie or even get dinner was a rarity and mostly out of the question
  • meals were either instant or made by parents 
  • Driving was not happening because pain was too intense (also I hate driving). 
  • was not able to turn my head to the right (at all)
  • getting blood taken by every new specialist I saw (looked/bruised like a human pin cushion) Reminder again: I hate blood/needles/etc.
  • Buzzfeed was a way of life and social media was my only portal to the outside world 
  • trigger points were causing dizziness and hypoglycemia
  • trying new drugs constantly that made me break out in rashes, vomit worse than the girl possessed by Satan in The Exorcist, too dizzy to stand or horrible GI issues
  • Beds were made in cars for trips that lasted longer than 30 min because I basically needed to be laying down at any given time.
Car bed: true luxury 

I was literally falling apart at the seams. Then I had another crucial moment that was probably inspired by listening to Beyonce. I was not going to be on the defense dealing with my pain. I was going to be pro-active and get second opinions from every specialist I could think of that could in any way have knowledge of what was happening to me. I saw my home PCP, rheumatologists, more physiatrists, sports medicine doctors, orthopedic surgeons (the worst people on Earth), more pain specialists, more PTs, neurologists, etc. Seriously, I had a posse of doctors and students following me around at any given time, calling me to just ask me questions and 5-6 residents sitting in some appointments. Nurses would make little cracks about "Erica and her entourage". This list of specialist doesn't include all the other desperate things I did for help and I won't even go into listing all of them, but some of them include hypnotists and private meditation counselors.  I also decided it was time to try and pull out the big guns. Nothing was going anywhere and I needed answers, dammit. 

Cupping via acupuncture: not my favorite thing aka pure death in a flaming jar. 

Post cupping bruises/trauma 

It was time for Johns Hopkins. Somehow, with the only stroke of luck I think I had over the course of this year, my dad had a connection to someone at Hopkins (both of my parents went to grad school there) and with a cancellation and some serious sweet talking/manipulation on my part, I had an appointment with one of the top regarded myofascial/pain specialists in the country in JULY--not of next year or the year after that, in a MONTH.  I was so excited, I could barely contain myself. 

PS. People laugh at me when I tell them that chronic pain and just keeping up with myself is a full time job. I kid you not, it is harder and more time consuming than anything I've ever done. If nothing else, just dealing with severe pain alone is exhausting. Add on, tracking down doctors, violently searching all my problems on the internet and ways to solve them, calling doctors about my drug follow ups (that usually always failed), checking blood reports, confirming and scheduling appointments (I don't even mean this sarcastically, my schedule was booked and secretaries fuck up sometimes.), dealing with my parents' (mom) melodrama and taking calls that last 45 minutes with overly curious residents. That shit takes time and none of it is fun. 

Now, finally, a climatic changing point--my Hopkins appointment! (I know you're all the edge of your seats.) I was nervous because I knew Dr. Gerwin (a neurologist) was probably my last real shot at any legitimate help with the unbearable pain I was feeling. He had a small practice, a nice, older English nurse named Susan who told me I was beautiful and brilliant (we were friends immediately) and was an old Jewish grandpa type. He didn't take insurance so he could do his practice however he wanted. (I learned quickly this is a good thing because he can see patients and give them the appropriate time they need without worrying about cramming a quota in per day.) This man was a legitimate genius. I had read all of his scholarly articles online and while I can't personally claim I always knew what the hell he was talking about, I knew that he did. I waited 2 hours for my eval (like I said, takes time with the patients) and my initial eval with him was two hours. He was so meticulous and looked at everything. He would ask me questions and I would answer. When he would determine I've told him enough of what he needed to hear, he would just put his hand up (to shut me up), close his eyes and just think. This guy is old school. After extensively checking the blood work and 20 page questionnaire I had to fill out for the appointment, it was determined by him with a cool confidence that I did in fact have chronic myofascial pain syndrome, as well as joint hypermobility syndrome and subclinical hypothyroidism. Other things he ruled out during the appointment: fibromyalgia, chronic fatigue syndrome, Marfan Syndrome. Other things ruled in: Vitamin D deficiency, B-12 deficiency. 

A cute sign in Dr. Gerwin's office--I knew I was home. 

New game plan: stop the PT I was doing that was failing anyway (again), start thyroid medication, see if it works, go from there. Strategically, we decided it was better to try one thing at a time than a million things at once to see what worked and what didn't. What worked? Thyroid medication. Not a clear fix, but I noticeably felt better on it. I was amazed. At the same time, after another brief moment of clarity, I decided I needed hobbies to distract me. I got Rosetta Stone for French and emailed a bunch of puppy breeders in my area to see if they needed help "socializing" puppies. (Hey, when you have nothing, you've got nothing to lose.) I figured, with all this sadness and pain, in the most ideal world, what would make me the happiest and soothe my poor soul? Puppies. Duh. (There will be another blog post on this later.) Like you'd expect, most breeders wrote me back in the nicest form of "LOL-no." but one woman truly felt bad for me and let me come by. But, puppies truly helped me and I accredit them to a good majority of my recovery. I honestly think to this day it was one of the best things I could've done for myself. (As ridiculous as this sounds.)

If you think there is anything more therapeutic than a bunch of 6 week old golden doodle puppies snuggling the crap out of you, there isn't.
Dr. Gerwin liked the idea of "puppy therapy" so much, he jokingly prescribed me a puppy because why wouldn't he. 

Next, he wanted me to work on "light strengthening" and we mutually decided reformer pilates with a personal trainer was the best route while simultaneously trying more drugs I've never heard of.  Around October/November things, I genuinely felt like I was starting to feel better.  I was actually doing pilates. I was so ambitious with doing the pilates/trying to lose weight/am impatient, long story short, I ended trying to kid myself I wasn't having having pain again and pushing my trainer into giving me harder workouts. Fun fact to anyone going through this: do not "push through the pain", this is not some CrossFit bullshit. If it hurts stop..or least slow it down significantly. I pushed myself too much, had to stop pilates and couldn't move for two months straight. 

More tears again, nights on end with the most pain I had experienced to that point. Not only was the pain bad, but now it was spreading through my arms and legs. Seriously, I could barely walk. The best way I can explain a visualization of the spasms is to picture a bunch of Christmas lights going off randomly in the shape of a body. Every light flickering is a painful spasm with a periodic knife-in-the-side kind of sharp pain that made me writhe in a way that looked almost unnatural. These episodes could and would go on for full all-nighters and days. I would be awake sobbing and writhing when my parents would get up and leave for work most of the time. This was my worst fear realized. 

Most of your friends end up being shitty, but I am lucky to have a true best friend that sends me crazy shit like this once in awhile and I truly love her for it.

I thought for sure I fucked things up and there was no coming back. December came, my birthday went by and I turned 24. Cue another existential crisis. I went back to Dr. Gerwin so defeated in January. My last--and only option at this point, per his suggestion--lidocaine injections into my trigger points. If you don't know what any of that means, think of the worst knot you've ever had in your back x maybe 200 of them (also known as "trigger points"), that you are a person who is deathly scared of needles and that those needles are going into these "knots". Also take into consideration that, with my luck going the way it was, they might not even work AND I would need them done weekly for an undetermined amount of time. This was my very own personal hell. 

So, it was finally time for injections. I had made plans for my first set of injections to be done at Dr. Gerwin's office in Bethesda, MA and the rest of them at home by my PCP who is a jack of all trades (and conveniently does lidocaine injections…and also delivers babies but that is irrelevant.) Before my appointment, my dad (who is just the older, more twisted/cynical version of myself) bet me that if I could get six injections done, he would give me $200. I had nothing to lose and unless it was literally killing me, I was out of options. The $200 was just an added bonus. (An awesome added bonus.) This pain was the CRAZIEST most painful thing I ever felt.  I cried (duh), shook uncontrollably and couldn't think of anything worse I had experienced in my life. At that moment, I imagined being hit on impact by a car and wondered if that would hurt less. I didn't think so. I wondered if my purely innocent, sweet old doctor was actually secretly evil. 7 injections later (because I am a determined person who thrives on proving people wrong) and hardly able to walk/mentally function when I was done, holding (read as: smothering) a dumb stuffed animal puppy wishing I was listening to Beyonce again/wondering if my doctor would ever even considering playing her music while I was getting these stupid injections. 

This was an unfortunate but convenient occurrence for hip injection days. 

The next few months, this bullshit was pretty much my life. My PCP is an amazingly kind person and scheduled me every Tuesday (on the days he didn't see patients) indefinitely as long as I agreed to letting 500 residents (being dramatic, but at any given time there were usually 1-2 in there with him helping) watch him stab me to death (plus he loves needles and is conveniently fascinated by what was happened to me--at least someone was.) Depending on the spots, sometimes it took me up until my next Tuesday appointment to recover/move just to be ready for the next round.  I was routinely getting around 15 injections weekly + god knows how many acupuncture needles a session. 

A slightly less painful option (and I say that relatively), was acupuncture needles attached to a TENS Unit to cover the mass parts of my body when two hours was not enough time for all the other trigger points, while I was simultaneously getting OTHER injections. 

Simultaneously trying not to puke and cry, while aggressively squeezing this dumb thing.
My life has gone on like this since January and I am proud of say that I have gone from weekly, to every other week, to now…once a month to stay ahead of them (cortisone/steroid, lidocaine and dry needling) while I aggressively do PT to simultaneously to work on my strength and getting myself slowly back to where I was weight wise, fit wise, etc. It has not been pretty. I would love to say it gets better with time and I got more used to it, and while my recovery time eventually significantly decreased, my fear for this shit will probably never go away, but I have had two very incredible doctors that have made it much more bearable. 

My last visit to Dr. Gerwin a few weeks ago was maybe the best thing to ever happen to me. He examined my entire body and said "This is incredible, you are incredible. No one recovers this quickly after having such severe pain." Almost teary eyed to write this as I just rehashed my whole tragic year and a half into this blog, he said I only had two trigger points left in my entire body--in my sacroiliac. For the first time since I've seen him, almost a year to this day, Dr. Gerwin finally gave me an actual time to expect being back to normal health (I say that with italics because it has conditions and limitations, like all people suffering chronically). He told me unless it gets worse, I do not ever need to see him again! 

FYI, I am still having generic back pain if I do too much during the day. Good days and bad bays, just like everyone else and I still have problems sleeping but I am hoping as my pain decreases and my level of activity increases, my sleeping problems will cease. 

My end goal is to continue with PT patiently, start pilates again, continue swimming and eventually work with a personal trainer for serious strengthening (and obviously go back to work). According to Dr. Gerwin serious strength training (5 days/week), healthy eating and psychiatric therapy to combat my anxiety are the only ways to really fight my chronic pain. (The strengthening keeps the trigger points from coming back and my stretchy limbs from over stretching.) It is an incredibly slow process and I am slowly learning how to be patient and truly appreciate what I have. I finally have so much to look forward to, including a celebratory trip to Vietnam with my Grandma that I'm planning. I have been yearning for adventure, but more importantly to get my life back, first and foremost. While I obviously have my weak moments, like most people, I am trying to stay as realistically positive as possible and rehabilitate myself into a newer, happier lifestyle.


  1. ERICA. You are such a strong and beautiful individual for facing this journey without throwing yourself off a bridge (you know that's what I would have done).

    I couldn't be happier to know that you're finally having some relief! There is a happy and healthy Erica in sight!! Soon enough it will be time to get your life back in order. :-)

    Love you so much.

    P.S. That ER selfie is a seriously gorgeous photo of you. Not a joke.

  2. I seriously am sitting here tearing up. You're an inspiring individual and I love you to pieces.