The Tale Of A Superhero In New York City

NYCThe Prednisone withdrawal that I’ve been dealing with over the past few months has been one of the hardest and most frightening things I’ve ever had to deal with. (Who would have know that ‘non addictive’ does *not* mean that you still can’t experience extreme withdrawal symptoms?)

And while I’m not yet at the finish line (but am oh-so-close, with my most recent taper down to 5 mg/day from a previous high of 25 mg/day), I think that things are finally back under control.

Just yesterday, a good friend–someone who inspired me each time we met over the past few months, and who always knew exactly what I was going through–pointed out that this was the first time she had seen me when I wasn’t trembling and when I wasn’t sweating.

She was right.

Now is the first time in a long time, when I can honestly say that I feel healthy. Am I saying I no longer have RA; that I’ve been cured? Of course not. Am I saying that I no longer experience indescribable pain on a daily basis? I’m most certainly not saying that, either. What I am saying is that now that I have to deal with “just”–if you know what I mean–pain of RA (or whatever the doctors do and don’t want to label it as, based upon personal experience) I am feeling more strong, and more empowered, than ever before.

Some people have suggested that maybe I was tapering down too quickly. Maybe I was, maybe I wasn’t…I dunno. What I *do* know is that three months ago, when my dose was at its all-time high (not only in amount, but also length of use–well past the half year mark), I wanted *completely out* of the entire Prednisone thing. It had far surpassed the original goal of trying to take away (mask?) some of the pain, and of allowing me to try to hold on to some semblance of mobility. It was not only, at a certain point, having the complete opposite effect…it was also heightening the effects of my downward emotional spiral (otherwise known as “depression”).

Because when every second felt like I had just drank a six-pack of Red Bull, when I would lay facing the ceiling until the sun came out, night after night, wondering how I was still going, even though I hadn’t slept in days, I knew that things were not right.

I wasn’t just losing control. I had already lost control.

And while I thought that previous tapers that I have gone through were challenging, I soon realized that they absolutely paled in comparison with what I was going through now. As I sat there, knowing that it would take many months to taper off the Prednisone, I told myself that even though I couldn’t (immediately) stop the free-fall that I was in, I could at least start to soften up my “landing” as best I could.

I knew a crash was imminent, and it was frightening as hell.

I also knew that once I reached “rock bottom,” that all I could do is bounce back up.

And I am bouncing. I am bouncing not in a way that is removed from reality, nor overly optimistic. I am bouncing in a way that is allowing me to get even closer to the pain, to accept it even more into my life. This chronic pain continues to teach me that I need to accommodate and respect the pain, when necessary…and also that I need to work right through the pain, when necessary. (The fun part of continuing down this journey: trying to figure out when it’s all about doing something, and trying to figure out when it’s all about *not* doing something.)

My shine is back, as I return to walking distance that I haven’t walked in more than a decade. This has not only been obvious over the past couple of weeks to those who are a part of my personal life, but it has also started becoming increasingly obvious to those who follow the adventures of RA Guy, both here on my blog and on my Facebook page.

Lots of people want to know, what new treatments am I on? What new medicines have I started?

I came to New York City earlier this year, looking for answers…and while, over the past few months, I didn’t find the answers that I was expecting, I did find the answers that I need.

I found out that exercise–and it’s very gradual incorporation back into my life–can have a more profound effect than I could have ever imagined, or even hoped for. (I also learned that Manhattan sidewalks, as intimidating as the can be to a person like me who walks with crutches, do provide quite the workout.)

I found out that certain foods definitely trigger flares for me. I didn’t need any fancy food allergy tests; all I needed was to remove as much as possible and then slowly re-introduce the most basic list of anti-inflammatory food items, in order to find out what was and wasn’t helping my body. (I also found out that food here in the U.S.–even fresh, unprocessed food–is not nearly as healthy as the food that I am used to eating back home in South America.)

I found out that meditation is not something that I need to “make time for.” It’s something I need to DO. (And that Pema Chodron’s books are excellent.)

I found out that stepping away from the computer, and going outside for some fresh air, can be very habit forming. (I simultaneously learned that I really don’t need to check email, Facebook, and so on all the time. Once or twice a day is plenty enough…and on some days, not even that!)

I found out how futile it is to resist change. Life is all about change, and to tap into this is to tap into something powerful. (And that just like pain, change is something that should be embraced, and not feared.)

A couple of weeks from now, I’ll be flying back to South America, from the heart of summer down to the middle of winter. I’ll be flying back to my husband, who helped me every day of this journey, whether it was over the phone, through Skype, and with text messages. I will be flying back to my dogs, whose ears I could see perking up when I spoke to them on video calls. I will be flying back to my rheumatologist, who makes house visits!, and to my physical therapist, who knows my body, and its corresponding aches and pains, almost as well as I do.

I won’t have any new drug treatment options in tow, but I will have all the answers that I was looking for.

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

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RA Guy: Season 5 (Starts Today!)

On April 24, 2009, Rheumatoid Arthritis Guy–the blog–was launched with this post!

Rheumatoid Arthritis Guy Saves The World!

Okay, so maybe I didn’t save the world – yet. But I did launch this blog, and on a Friday afternoon no less. Now I can kick back and relax over the weekend. I’ll go back to saving the world on Monday.

The idea to start my own blog has been simmering around in my head for a while, but upon hearing for the third time in a month “Why don’t you start your own blog?” I finally decided to give it a go. I put aside my self-paced iPhone application development training (and corresponding new MacBook Air – what a lovely thing) and jumped into the world of Adobe Illustrator (illustrations on the right) and WordPress (blog publishing software, for those who are not familiar).

I hope to have fun sharing adventures of my journey through chronic pain and debilitating inflammation. My rheumatoid arthritis has undergone a major progression during the past few months, and I need to turn my daily routine of putting on and taking off my wrist guards and ankle protectors into something fun. Hence, Rheumatoid Arthritis Guy and his tungsten wrist guards and titanium ankle protectors.

And yes, I really do still have a full head of hair. Although two weeks ago I started taking Arava for my rheumatoid arthritis, and one of the most common side effects of this drug seems to be hair loss. Here’s hoping that I don’t become follically challenged. (Although I guess being able to comfortably lift a brush is more important than having a full head of hair – darn those wrists!)

So welcome to my world and welcome to my blog. Don’t be shy – I would love to hear from you.

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

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When Things Fall Apart: On Fear

Excerpt from When Things Fall Apart: Heart Advice for Difficult Times:

Once there was a young warrior. Her teacher told her that she had to do battle with fear. She didn’t want to do that. It seemed too aggressive; it was scary; it seemed unfriendly. But the teacher said she had to do it and gave her instructions for the battle. The day arrived. The student warrior stood on one side, and fear stood on the other. The warrior was feeling very small, and fear was looking big and wrathful. They both had their weapons. The young warrior roused herself and went toward fear, prostrated three times, and asked, “May I have permission to go into battle with you?” Fear said, “Thank you for showing me so much respect that you ask permission.” Then the young warrior said, “How can I defeat you?” Fear replied, “My weapons are that I talk fast, and I get very close to your face. Then you get completely unnerved, and you do whatever I say. If you don’t do what I tell you, I have no power. You can listen to me, and you can have respect for me. You can even be convinced by me. But if you don’t do what I say, I have no power.” In that way, the student warrior learned how to defeat fear.

There is a fundamental opportunity for happiness right within our reach, yet we usually miss it–ironically, while we are caught up in attempts to escape pain and suffering. Drawn from traditional Buddhist wisdom, Pema Chodron’s radical and compassionate advice for what to do when things fall apart in our lives goes against the grain of our usual habits and expectations. There is only one approach to suffering that is of lasting benefit, Pema teaches, and that approach involves moving toward painful situations with friendliness and curiosity, relaxing into the essential groundlessness of our entire situation. In the midst of chaos, we can discover the truth and love that are indestructible. Included in the book are:

  • ways to use painful emotions to cultivate wisdom, compassion, and courage
  • ways to communicate that lead to openness and true intimacy with others
  • practices for reversing our negative habitual patterns
  • methods for working with chaotic situations
  • ways to cultivate compassionate, energetic social action

More Info: www.amazon.com/When-Things-Fall-Apart-Difficult/dp/1570623449

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Update 27 March

Things are spinning out of control, and I have to step away for a while. Please know that I have a lot of people looking out for me right now, and I know everything will be okay.

I look forward to sharing more superhero adventures soon.

xoxo

RA Guy

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Don’t Stop Looking For Answers

Having been in New York City for a little over a week now, I’ve reached that point where I feel like I’m finally getting settled in–partly due to the fact that my stress about my long international travel day is now a thing of the past, and partly due to the amazing support network that has mobilized around me.

It’s common to hear how a chronic illness like rheumatoid arthritis can weaken certain relationships. This is undoubtedly true, and I have experienced as much more than once during my RA “career.” I’ve also learned that there are often many other underlying issues that can attribute to such a thing happening, and that it is rarely ever completely the fault of this illness with which I live, and to the (sometimes) corresponding lack of understanding on the behalf of others.

One of the ways living with rheumatoid arthritis really rocks, however, is in learning who *is* there for you, ready to provide you support whether you ask for it or not. (Because, as is often the case, we usually need the most help when we’re the least inclined to accept it.) It is also in learning that this support can not only come from places you least expect…but it may also come from a wide multitude of sources. Recognizing this support network that surrounds me, and allowing them to step in and help in so many different way, has quite honestly been one of the few things that has allowed me to remain so optimistic over the past month.

Because while I know that good things will (and have already) come from this current adventure, and while I also know that nothing is guaranteed in terms of finding a way to slow down the progression of my RA, I also know that between the choice of focusing on what is going wrong or focusing on what is going right, I continue to make the only choice that I consider to be viable: find a way to make the most out my situation, no matter what that situation might be.

Even if it means throwing up blinders to certain situations in my life, in order to focus on what is absolutely required to not only keep moving in a physical sense, but also to keep moving forward in an emotional sense. While some people may interpret this as selfishness, those of us who live with this on a minute to minute basis know how it often comes down to a sense of survival; a way to not plunge into the darkness. (I’ve been there before, and never want to go back.) And while some people might interpret this as my advocating for thoughts of avoidance and denial, I am actually saying quite the opposite: don’t focus on everything…focus only on what matter the most.

One of the most difficult aspects of living with rheumatoid arthritis has been learning how to not only ask for help, but to graciously accept it when it is offered. While I got on a crosstown bus this afternoon, a lady offered me her seat. I thanked her, and immediately accommodated myself. A few minutes later, the lady next to me offered her seat to another person who had just gotten on the bus. This time around, though, the attempt to help was not so well received. “Do I look that old?” the new passenger asked, “because I really don’t like for people to offer me their seats.”

And I sat there chuckling to myself, trying to figure out how someone would not want to sit down and give their knees a break…and then I reminded myself that everyone is not so, let’s just say, “privileged” to have a pair of knees like mine.

Learning when and how to receive support is absolutely essential to figuring out how to cope with this disease. I know how isolating it can feel at times, how it can seem that very few people might be able to understand what is going on…but part of our role, as people who live with a chronic illness like rheumatoid arthritis, it to let other people know what we are living. (Of course, not only do they have to be willing to listen…but we also need to figure out a way to make them want to listen. It’s not always easy to find that right balance, but it is possible.)

As with so many other aspects of living with this disease, the answers we need are not always front and center. We have to look for them. Most importantly, we have to *want* to look for them. I have learned, firsthand, that as long as I continue to follow this philosophy, I will always continue to find the answers I need.

Because if we don’t continue looking for answers, what else is there to do?

In closing, I would like to thank each and every person who has offered a caring gesture of support over the past few weeks; I had originally planned on describing each generous act but the list has grown way to long. Please know, your support has forever been registered into my memory, and etched into my heart. I will never forget this recent period where I once again came oh-so-close to getting lost, but (fortunately) allowed myself to grab on to the helping hands that so many people around have and continue to extend. I may not be flying yet, but I have no doubt that I will soon be back to my normal superhero ways.

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

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