Hospital For Special Surgery: Share Your Story

RA Guy Adventures of RA Guy 14 Comments

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!

Hope Care Package Exchange

RA Guy Adventures of RA Guy 21 Comments

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!

This Was My Month

RA Guy Adventures of RA Guy 4 Comments

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!

“Misleading” About The “Realities” of RA

RA Guy Adventures of RA Guy Leave a Comment

People often tell me that I am “misleading” the public about the “realities” of living with rheumatoid arthritis.

When I read such comments, I’m not exactly sure what to think. I wonder: do these people know that I’ve written *years* of blog posts in which I describe some of my most challenging times, and talk about what’s it’s like to reach a point where I could barely move and had to be fed, bathed, and clothed by others? I also ask myself, do they know just how many personal details I’ve shared (publicly) about the multiple episodes of suicidal ideation that I’ve experienced throughout the years, information that is painful to share but which I do nonetheless all in the hopes of helping others who find themselves in the dark spot where I once was?

Then I look at the things that provoke such comments–my ability to smile and laugh even (especially) in the face of excruciating pain, my figuring out how to bring my disease that was boiling out of control down to a more gentle simmer (on most days), my being able to accomplish feats that I never thought possible even before RA entered my life, and my learning how to cope well and live well with this painful and debilitating disease–and I tell myself: if showing others that it IS possible to bounce back up from some of the lowest lows and that it IS possible to live life to it’s fullest even with a disease like rheumatoid arthritis is, in *any* way, misleading…then “mislead” is exactly what I’ll continue to do.

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