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!

Rediscovering (My Soul)

RA Guy Adventures of RA Guy 6 Comments

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!