Hospital For Special Surgery: Share Your Story

closed doorsTwo years ago today, I was in the midst of an extended stay in New York City. (Even though I am a U.S. citizen, I’ve been residing in South America for the past 10+ years.) The reason for my visit: to go to the Hospital for Special Surgery in the hopes of receiving a new treatment for my rheumatoid arthritis, which had spun out of control and which was no longer responding to the pharmaceutical treatment options that were available down here where I live.

I have since opened up about some of the many challenges that I faced during this period, when I reached rock bottom. What I haven’t spoken much about are the details of what actually took place, when I walked into this hospital looking for something — anything — that might be able to help me.

My primary reasons for not sharing my story were twofold.

First, I was so shocked and hurt by what happened that immediately upon returning home, I scheduled numerous sessions with my psychologist in order to work through the emotional pain of what took place. I knew that I’d probably reach a point when I would be ready to publicly talk about what happened, but that until I then I didn’t want to write words that might seem to come from a place of anger. (My rheumatologist, who has been treating me for years, actually started trembling when I updated him on some of the things that had taken place — that is how upset he was!)

Second, I met many professional and caring individuals within this healthcare center — nurses, lab technicians, and support group coordinators, that I didn’t want to paint the entire institution with one broad brushstroke. As is the case with most organizations, one will find good, caring people and one will find, well, let’s just say…the exact opposite.

I’ve reached that point, though, where I am ready to share.

I share my story because I think that by doing so, I will finally be able to gain some closure on what ended up being one of the worst experiences of my life. I share, because I hope that these words might be able to provide some support and encouragement to individuals who currently find themselves, or who might one day find themselves, in a similar situation. I share, because a reporter from a major international newspaper recently encouraged me to talk more about some of the challenges that I’ve faced while trying to receive healthcare. And I share, because just a couple of hours ago I received an email from the Hospital for Special Surgery, asking me to share my story. (I really did! Okay so it wasn’t a personal message directed specifically to me, but it was an announcement about the hospital’s newest PR campaign titled — you guessed it — “Share Your Story.”)

So, here’s my story of being “treated” for rheumatoid arthritis at the Hospital for Special Surgery in New York City:

  • Upon seeing me for the first time, the very first thing Dr. C. Ronald Mackenzie (former chair of the American College of Rheumatology ethics committee, and current ethics chair of the Hospital for Special Surgery) did was ask: how does social security disability work, and why are you applying for this program? As far as he could tell, he opined, I was a perfectly healthy young man. (Never mind that he had never even met me in person up until a minute or two before, and also had not yet had a chance to look at any of my medical records. As far as my extreme difficulty with any type of movement, as well as my forearm crutches, well…I’m not exactly sure what he thought those were a sign of.)
  • The next thing Dr. Mackenzie did was glance through the medical notes that the other doctor in the room, Dr. Reena Khianey, had just spent the previous hour jotting down. Dr. Mackenzie pulled out a pen and immediately started crossing out item after item on the list of diagnostic tests, labs, and radiography exams that Dr. Khianey had prepared. We have to look at his knees and at his eyes, Dr Khianey protested — those are the patient’s biggest areas of complaint! We are not going to look at his knees and his eyes, Dr. Mackenzie replied — I already know that they are not going to show us anything.
  • On a follow-up visit, I was informed by Dr. Mackenzie that due to my personal financial situation, he would *not* prescribe me any of the newer biologic treatments, even if he did determine that I was (medically-speaking) a candidate for such treatment options. When I told him that it was his responsibility to prescribe medications, and that it was my responsibility to find a way to pay for them — that I even had a letter from the hospital’s financial assistance office describing some of the prescription assistance plans that I might be eligible for, he replied that I was misinformed.
  • He went on to say this was clearly a case of my subjective analysis versus his objective evidence, and as far as he was concerned, I showed no indicators of having rheumatoid arthritis. When a friend who accompanied me on this visit asked if my high prednisone use might not be masking some of the  symptoms of the disease, Dr. Mackenzie responded by standing up and walking out on the both of us — made all the more awkward by the fact that we were in his office!
  • On subsequent visits, when I was displaying very obvious (and serious) symptoms of corticosteroid withdrawal, I was asked if I was on any illegal drugs.
  • For months, the hospital’s accounting department kept sending me bills in the amount of tens of thousands of dollars, even though I had a letter from the very same hospital’s financial assistance office detailing what my reduced co-payments were to be, and even though a physical copy of this financial assistance letter was provided to each and every department that I dealt with; this error was corrected only after my account was eventually sent to a collections company.
  • One day, I received a text message from one of the doctors assigned to my case, telling me that it might be best if I went somewhere else for treatment.

And this, in a nutshell, was what happened during those three months that I spent in New York City.

In the end, however, I learned a *very* important lesson: hope is not always something that can be found by taking certain medications, nor is it always something that can be found from healthcare professionals or healthcare institutions (even supposed “top ranked” ones)…and don’t get me wrong, I’m not anti-med, and I’m not anti-doctor. I know that a lot of people benefit from many different medications, and I know that there are more good healthcare professionals then there are not. I’m just trying to make the following point: hope is something that resides within each and every one of us, and the sooner we realize this, and the sooner we start to tap into the hope that is inside of us, the sooner we’ll be able to overcome any — and all obstacles — that are placed in our paths.

I could look at my experience with the Hospital for Special Surgery, and use it as a reason to harbor feelings of anger and sadness, I could have used it as a reason to give up (which I darn well came very close to doing)…or I could look at my experience, and see it for what I was ultimately able to turn it into: an impetus to OWN my health, and an opportunity to realize that no matter how challenging things might get, it is always within my ability to stand back up, and it is always within my ability to keep moving forward.

There will *always* be doors that close on us — an uncooperative doctor, a difficult financial situation, or a disease that is not responding to treatment — but as the saying goes, when one doors closes, we just have to find a way to open another one. I didn’t find the answers that I was looking for, but I did the find the answers that I needed. And for that, I am grateful.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Hope Care Package Exchange

hope-paintingQuite often the smallest gestures make the biggest differences, especially while living with inflammatory arthritis. Join us for the first ever Hope Care Package Exchange, and help make a positive difference in someone else’s life, while someone else works to make a positive difference in your life.

How Does This Work?

If you are interested in joining this Hope Care Package Exchange, sign up below before Thursday, April 30, 2015.

During the first week of May, you will receive a message with the name and email address of the person to whom you will be sending a Hope Care Package. Contact your Hope Care Package recipient directly in order to get their mailing address. While you’re at it, feel free to share a little bit about yourself, and about how you LIVE with inflammatory arthritis.

Now, all you have to do is start putting together your Hope Care Package! All Hope Care Packages should be exchanged by Tuesday, June 30, 2015.

What Should Be Included In Hope Care Packages?

Be creative, and think about things that have made a positive difference in your life, and what you think might make a positive difference in someone else’s life. This may include, but not be limited, to:

  • Arts and Crafts: knitted scarves, gloves, or hats, small crochet or quilted projects, poured candles, etc.
  • Creative Works: framed photograph, homemade books, drawing and paintings, etc.
  • Small Gifts: bodycare and relaxation products, jar openers and other assistive devices, a book that has really helped you, a mug and some tea from your corner of the world, etc.

Please expect to spend around $20-25 US Dollars on your Hope Care Package.

Anything Else?

Yes. Please remember that this Hope Care Package Exchange is based on trust and is only for those who are serious about participating and following through. Rheumatoid Arthritis Guy assumes no responsibility for people who sign up but do not follow through on their commitment to send a Hope Care Package.

Oh, and the personal information that you provide below will *only* be shared with the people you will be sending to/receiving from. Your name and email address will otherwise be kept private, and will NOT be shared with any other person, organization, or company.

[Sign up has closed.]

Update May 1, 2015: Thanks to everyone who signed up! In the coming days, you will receive an message with the name and email address of the person to whom you are sending a care package — please stay tuned!

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This Was My Month

SajamaI shaved my head, in order to more fully enjoy the last few weeks of warm weather (don’t forget, I’m in the southern hemisphere). I welcomed the arrival of autumn. I walked across bridges. I walked through crowded city streets. I walked down barren river canyons. I walked past fields full of sweet-smelling wild flowers. I broke in a new pair of hiking boots. I broke in a new pair of custom orthotic inserts. I re-familiarized myself with South American wine. I cooked. A lot. I organized my favorite recipes. I made chicken korma from scratch, all the way down to the garam masala. I further reduced my consumption of processed foods and refined sugars. I read. And read. And read some more. I saw (most) of the Oscar-nominated movies. I started to explore Jazz music. I incorporated weight lifting into my exercise routine. I started using the steam sauna at the gym. I lost even more weight (my current belt is down to its last notch). I traveled to a volcano on the border with Chile. I visited ancient Andean burial monuments. I got caught outdoors in a sudden blizzard with complete white-out conditions (both fun and scary). I pushed myself to keep moving on the days when my RA activity was low. I stayed in bed and allowed my body to rest on the days when my RA activity was medium-high. I said farewell to my dear dog Alva. I spent a lot of time playing with my two pugs, Oliver and Bella. I barbecued for family and friends. I upgraded to an iPhone 6 Plus (primarily for the camera). I sat down at a coffee shop, and didn’t immediately start checking all of my social media accounts. I bumped into my rheumatologist at the local farmers market. I started planning for an upcoming family reunion. I got lots of rest. I learned more about my mind and my body. I lived life.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Rediscovering (My Soul)

RediscoveringI’ve always been fascinated with learning–and living in–cultures other than my own. This has less to do with any lack of appreciation of my own culture, and has more to do with wanting to go out and explore; with wanting to go out to see–and experience–the world with my very own eyes.

When I was fifteen years old, back before the arrival of the Internet when even domestic long distance telephone calls were exorbitantly priced, I took off to live in Northern Italy as an exchange student for close to a year. Other than a few phone calls on special occasions, such as Christmas, New Year’s Day, or my birthday, all of my communication with family and friends was done the “old fashioned way”–through good ole’ postal mail. This level of immersion, something that I think would be difficult to achieve in this day and age of online connections, allowed me to see a completely different world not from the outside, but from the inside. Within a few months, I garnered such control of the language that I could (and did) easily pass as a native Italian.

The following ten years of my life took me to live not only in cities such as New York City, Boston, and San Francisco (quite a feat at the time for a kid from small town Texas), but they also allowed me to travel and visit many places around the world, some more foreign than others. A sampling of the highlights from this period include enjoying the midnight sun from right below the Arctic Circle in summer time Norway, being stopped at the border of the former country of Yugoslavia by officials who refused to accept my visa because their republic had just taken some of their initial steps towards independence, and getting more lost than I could ever imagine (and loving every second of it!) in Beijing.

Right around the time when the initial symptoms of rheumatoid arthritis started entering my life (although I had no clue they were as much, or even less of a clue what an autoimmune disease was), I found myself needing to take a break from my corporate job in Silicon Valley…so even though my mother shed a few tears when I announced that I was moving to South America for two years (I am now going on twelve years as of this past month!), no one–not even my mother–was really surprised to hear the news.

As many people who have visited this corner of the world know, the city of La Paz, Bolivia is breathtaking in more ways than one. Located at 3,600 meters above sea level, this is the highest major city in the world. Our local airport is even higher, at 4,000+ meters, and requires not only a runway that is twice as long as most, but also has a landing/take-off speed that is almost two times as fast as the norm. We are so high that pilots of flights originating from the U.S. are–by law–required to use oxygen masks! And as if that isn’t enough, the horizon from the canyon that is the city is dotted with tall Andean mountain peaks which are covered by snow year round.

And as many people who have been here before also know, the city–and its culture–defy any simple descriptions. Some of the people–and languages–that continue to exist date back to pre-Incan times. One of those is the Aymara culture, which is fascinating in so many ways. Not only have sociologists determined that they are the only culture that visualizes the past as being in front of them, and the future as being behind them, but their language, and its corresponding three-value non-Aristotelian logic, is not only of great interest to people who are working in the field of artificial intelligence, but was also deemed the “perfect language” by linguist Umberto Eco.

The Aymara people have a beautiful word for a person’s soul, and that word is ajayu (pronounced “aah-high-you”).

There is a belief among many that a person’s soul can easily be lost, particularly (especially) when a person is scared. It is very common, even in this day, to see elders “calling back” the soul of a young person who has been frightened. There is also the belief that should any person, young or old, lose his or her soul, the only way to get it back is to go to the very same physical location where that ajayu was lost.

A couple of months ago, my husband and I were in New York City for the Thanksgiving holidays. This visit was long overdue, especially due to the fact that our last visit there many, many years ago coincided with the biggest flareup of my still-at-the-time-undiagnosed rheumatoid arthritis, and with day after day of me being stuck in bed in the hotel room, thinking that I was battling the flu of a lifetime. Even though it happened much later than I might have originally hoped for, I was finally able to show him–firsthand–this city that meant (and still means) so much to me, back to the time when I was an architecture student at Columbia University.

One day during this recent visit, I found ourselves heading in the direction of the Upper East Side. (While I usually start a vacation with a list of things to do and places to visit, I still allow myself to discover and enjoy the beauty that can be found by meandering, by deciding which way to turn only upon reaching the next street corner.) As we continued in this general direction, I kept thinking to myself: why are we going here? And even though I sort of knew why we were heading to this part of town, I still didn’t want to fully accept that I was indeed going where I was.

And before I knew it, there is was, right in front of me: the (to remain unnamed) rheumatology care center that I traveled to a little under two years ago, when my disease was raging out of control, and when my emotions (and my entire person) continued to reach breaking point after breaking point after breaking point; the very same place where so many individuals from the inside let me down during my time of need and continued to–for some reason or another–deny the reality that was so visible to all of our eyes. I’ll never know why, but the louder I let it be known that I needed answers more quickly than ever, the more they let it be known that they weren’t really interested in helping me.

As I crossed the street, I reached the *exact* spot where my life was nearly lost but ultimately saved, when I received a phone call from my husband on that darkest of days when I decided that life was no longer worth living. I told him as much as he stood by my side, in the present day. “This is where I was when I decided I was going to end it, and this is where I was when you called me.”

I looked up at the healthcare center, and was surprised to notice that I had no feelings of anger, loss, sadness, or frustration. Everything that I was feeling at the moment was indeed a good thought, such as: I am alive, or, that I ended up being able to find the answers on my own, as difficult as the entire experience might have been.

I also thanked this place, and all of the individuals associated with it, for teaching me a lesson that I might not have been able to learn otherwise: I am, and always have been and always will be, stronger than I might imagine, and I am not going to let anything–or anyone–stop me from finding the answers that are right for me.

And in that very moment, I felt it, and I knew what this entire journey was all about.

My ajayu was back.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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Tricking My Mind

TrickingTheMindPain has a tendency to want to mess with our minds.

It chips away at reluctant hosts with thoughts of weakness and worthlessness, and tries its darndest to make people believe that life sucks.

In it’s most ruthless state, pain creates fear. LOTS of fear. It scares individuals into stopping the things that they love doing the most. It lulls them with false promises as it whispers into their thoughts: if you stop doing the things that make you happy, the things that you love the most, I *will* go away.

Trust me.

The thing is, when pain starts talking this way, it is not to be trusted.

Throughout my more than ten years of living with rheumatoid arthritis, I fell multiple times for these false promises that the pain so often presented in an attractive light. Each time I cast aside the things that bought me joy with each new day, all in the hope that doing so might be *the* thing that would finally make the pain go away, I found myself in a place where I only hurt worse.

I found myself in a dark, scary spot that is unimaginable to many, but which–sadly enough–is all too familiar to many of us who live with chronic pain.

A couple of years ago, after years and years of trying anything/everything to make the pain go away, I decided that I would start tricking my mind.

Instead of telling myself that life sucked, I started telling myself that life was beautiful…just the way it was.

Instead of telling myself that the pain HAD to go away, I started telling myself that everything would be okay…even if (and when) the pain continued.

Instead of telling myself that I was weak, I started telling myself that I was strong.

Instead of telling myself that I was sick, I started telling myself that I was healthy.

Instead of telling myself that I could no longer do x and y, I started–immediately–figuring out just exactly how I *would* do x and y.

And instead of telling myself that feeling scared was a normal response to each new day, I started telling myself that fear had no place in my life.

When I started rewiring my thoughts–or, as I referred to it, “tricking my mind”–I couldn’t help but ask myself (and others who were close to me): am I just fooling myself? Am I just leading myself down a path of denial and unfounded optimism; won’t I just end up in another dark spot, as I have so many time before?

No, you’re not fooling yourself, they told me. You’re doing what you need to do to survive.

Having followed this new path for much of the past couple of years, I’ve discovered a place that is brighter than anything I have known before, either with our without the constant pain.

I find myself in a place where the pain–the very thing that used to hold me back–now motivates me to go out and live life to its fullest, each and every day.

And I’ve come to realize that what I was doing all along wasn’t tricking my mind.

I was tricking the pain.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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