Rock Bottom

Rock BottomEarlier this year, I was in complete crisis mode. Not only was my physical condition rapidly deteriorating–so much so that I started having serious vision problems in addition to my chronic pain and mobility issues–but my emotional state was almost a complete wreck. (I say “almost,” because I would later learn that I would fall more than I ever thought imaginable.)

I decided to ask for help. Even though I was uninsured and unemployed, as I have been for years, I decided to take control of my situation, and to look for a way to gain access to some of the newer–and very expensive–biological therapy treatments for rheumatoid arthritis. I asked readers of this blog to submit reference letters (thanks again to all who did!), I asked medical institutions for financial assistance, I asked family members for money, and I asked friends if they would open up their apartments to me, so that I could stay in New York City for a few months to explore options. Against all odds, I arrived at the lower tip of Manhattan in the middle of March, on a frigid winter morning.

Things were looking up.

Within the next couple of weeks, however, everything started to spin out of control–not only with my body and mind, but also with my life. The doctor who was assigned my case made it clear from day one that he had no interest in helping me (going so far as to, on a follow-up visit, walk out on me and my friend). My long-term Prednisone use had already made me lose the ability to control my thoughts (and was without a doubt heightening my depression), but every attempt to lower my dose–even in very small amounts–made my body go haywire. To make matters even worse, I woke up one day to find that all of the money in my bank account was gone. (With the help of family members, I had budgeted what I’d need to cover my personal expenses…but as soon as this money was transferred into my account, it was taken back out–garnished by the State of California for back taxes.)

The next day, I told my best friend from college–who stood by my side so many times during those months that I was in New York City–that I could not do it anymore. I told her that I was afraid that I was going to kill myself. She tried using her trademark humor (one of the things I love most about her) to cheer me up, but I wasn’t having any of it. I was done. Finito.

She did ultimately convince me, though, to keep on trying. I haven’t worked through all of the challenges I’ve worked through in the past to give up now, I told myself. I had to keep moving forward.

I decided that I would start walking every day, even if it was just for a few minutes. I told myself that I would get to know the city (and the buildings, and the grid, and the urban design) that I fell in love with twenty years ago, when I was a young college student at Columbia University. Even though the crowded sidewalks were absolutely frightening (and the subway system even more so) for a person like myself, who could barely move with the aid of crutches, I made a point to start moving more. I would get through this…I didn’t know how just yet, but at least I was–once again–moving in the right direction.

My physical condition continued to worsen. I was growing pallid. I was constantly shaking. I was sweating through multiple layers of clothes, 24/7. The ‘experts,’ who previously denied that my medicines (methotrexate and prednisone) could be causing such problems, were now accusing me of taking illegal drugs. (You know your world has turned upside down when complete strangers in New York City show more concern than the doctors; right around this time, a guy who I didn’t even know turned to me, as I struggled to walk down the sidewalk, and told me: Hang in there, buddy–everything is going to be okay.)

I had already stepped away from my blog, and from my volunteer work with Show Us Your Hands!, to focus solely on myself…but things still continued to deteriorate. There was very little food that my body could handle, I started developing extreme sensitivities to smells and anything that came in contact with my skin, and the frequency and length of my episodes of blurred vision continued to increase.

One weekend, concerned family members suggested that I travel to California, so that I could take a break from the hustle and bustle of NYC,  and from my constant medical appointments that seemed to be leading me further from, and not closer to, the truth. I agreed that I would get on a flight the next day–right after my morning medical appointment, that was.

The next day, I texted friends and family members to let them know that I would not be going to San Francisco, as planned.

What I *didn’t* tell them was that when I woke up that morning, I felt like I no longer had anything left inside of me. I was empty. I was finished. As I had told my best friend a few weeks earlier, I could in fact no longer do this. I was going to find my out, and I was going to find it that very same day.

As I walked to the subway station, thinking about specific details of how to do something that I hope to never have to think about again, I felt my phone vibrating. It was my husband. He had just received my text, and wanted to know why I was cancelling my trip. I’ll go another day, I told him. And even though I didn’t tell him what was on my mind, I think he knew, because he told me that I needed to immediately go to the airport and catch the next flight out.

I ended up listening to what he told me, instead of  listening to what I was telling myself. I sat in seat 37F (last row middle seat) for the next few hours, and started to marvel at the beauty of being alive, even with the constant challenges that I face. The next day I walked on the beach and breathed in the fresh Pacific air. I told myself that I had reached rock bottom, and needed to declare as much.  I knew that I still had a long uphill climb in front of me, but I also knew that everything was going to be okay.

I was right.

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

92 Comments

How I Keep On Moving While Living With Rheumatoid Arthritis

movementEarlier this week, I met my former yoga instructor (now friend) for coffee. She asked me if I was still practicing yoga, and I said yes–but that I was doing it on my own, not in a group, and that I was not following any formal routines or strict series of poses. Instead, I now pay attention to what my body needs at any given moment, and use that as the basis for my ‘spontaneous’ workouts. If my body can do something, I do it. If my body can’t do something, I don’t do it (because I know that attempting to do so will only bring physical harm). I have fun with what I do, and I love the fact that every one of my ‘workouts’ is unique.

What I was describing, she told me, was the true essence of yoga–and she was very happy that I not only found it for myself, but that I continue to use it to improve my life and to keep on moving, despite the ever-present pain and disability.

When I talk about the fact that I now exercise on a regular basis, through alternate days of walking and yoga, I often receive angry messages from readers. These people tell me that it is not possible for someone with severe RA to exercise the way I do, hence I must either have non-severe RA (whatever that means, I don’t know) or that I must not have RA at all. Some go even further, and accuse me of being irresponsible for communicating my message that yes I am a person who lives with rheumatoid arthritis, and that yes I still continue to exercise!

But maybe this last piece is the part they understand the least. You see, I really don’t see what I’m doing as exercise. I see it as moving. And I see it as continuing to do everything within my control to keep on moving–because I know exactly what it feels like to not be able to move.

Case in point: I have been living with severe muscle contractures in my back for the past few years. This means that my back muscles are in a constant state of tension, i.e. they are both losing their elasticity and starting to shorten. Last year both my rheumatologist and my physical therapist told me that there was no pill or injection that could counteract what was going on in my back, and that the only way for me to be able to keep on moving was to, well, figure out a way to keep on moving. More specifically, I had to start doing range of motion and strengthening exercises for my back.

And yes, the thought of moving something that hurt so much seemed–at the time–completely illogical. My back screams out in excruciating pain when I move it, and you’re telling me that the only answer is to move it more? I have since found out for myself that yes, moving it more is indeed the right answer. (And this, from someone who had to undergo months of physical therapy treatments where electrical currents were used to perform the initial stretching of my back muscles–to call these sessions torture is not an understatement–so that I could then try to maintain such flexibility on my own.)

After months and years of working on this one specific part of my body, I have reached a point where I am now able to move my back with much more ease…but the trick is, I have to continue to do my range of motion and strengthening exercises…all…the…time…so much so that if I go more than 48 hours without working on my back, it starts to seize up. (Hence, my alternating days of yoga practice that I mention above.)

What about my walking? I’ve made no secret of the fact that over the past half year, I’ve started walking long distances on a very regular basis. Again, some people take this as a sign that I don’t have RA, or that I am in remission (both statements are untrue). I still continue to have significant pain in my toes, ankles, knees, and hips–this remains unchanged. But I have also considerably strengthened my legs, and this counts for a lot. Most importantly, it allows me to not have to use my cane and crutches as frequently as I once did, which in turn greatly reduces the load that my continually-weakening hands have to bear. (The eternal Catch 22 of RA: you need crutches in order to walk, but you need strength in your hands/arms in order to be able to use crutches.)

Twice already I have come back from the verge of being almost completely crippled, to regaining my mobility. This doesn’t mean that my pain has gone away, or that it doesn’t hurt to move. It only means that I know where my body is on a day-to-day basis, and I also know that if I don’t continue moving each and every day–as much as I possibly can–that this disease will very quickly get the best of me.

For me, it has nothing to do with exercise, and everything to do with movement (if that makes any sense). So much so, that I regard both my walking and my yoga as moving meditations. I light a candle and some incense if I am indoors, or listen to some relaxing music if I am outdoors. Most importantly, I focus on each and every breath, and on each and every movement. I prove to myself that even though my brain is continually sending me signals to not move (it’s own built-in reaction to receiving continual pain signals), that I am indeed finding a way to still do so.

So is it possible for a person like me to move the way I do? Absolutely. It’s not easy, but with determination and the right mindset, it is possible…and as with everything else in life, what is right for my body is different from what is right for other’s bodies.

Every step I take, and every yoga posture I hold, serve to remind me that I, and not my RA, am in control of my body.

I wouldn’t have it any other way.

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

17 Comments

Listening To My Body

imagesThe joy that comes from waking up each morning not only rested, but with a body that is a tad bit stronger than just the night before, is completely indescribable. (This is a nice counterbalance to another thought that I carried around for the past few years, which is that there is no way to even begin to describe what living with chronic pain actually feels like.) Throw in increased energy levels, healthy weight loss, and a peaceful minds and things get…well, even better!

Which doesn’t mean than I’ve reconnected with the life that I love so much as a result of this pain having gone away, but that I have been able to do so precisely *because* I continue to experience this pain each and every day. Just like the football team coming on to the field, every morning I have to intentionally punch through that barrier of pain and immobility that seems to always be setting in. (I also can’t help from thinking about dust: 1. even the smallest amounts are quite noticeable, and 2. the more it builds up the worse things usually get.) For me, this hasn’t been a journey of “finding out what works.” (It has, and it hasn’t.) It’s been a slightly similar but critically different pursuit that I’ve been able to identify during all the years that I’ve lived with RA: it’s about tapping into the continually shifting set of coping mechanisms that allow me to not only live with the pain, but to go out and lead the life I love.

It’s about what works for me right *now*.

Because what works for me tomorrow might be different than what works for me yesterday…and what works for me today is definitely very different than what worked for me last year.

(As some wise souls have already so concisely stated: the only thing that is constant is change.)

And as much as I’ve been sharing about how the things that I’ve started doing over the past few months have helped me tremendously, I’ve not talked as much about an even higher principle that has helped me even more. While pushing myself to do just a little more today than I did yesterday is important, and while the need to keep moving is absolutely critical, it’s even *more* important to not push my body too far, or to push my body too quickly. (Wouldn’t doing so be, by definition, the meaning of “harm?”)

It’s about listening to my body.

Just like I had to do this past week, when I injured some tendons in my left knee while stepping off a chair. Or when I reached a point Sunday evening when my back tightened up so much that I had to literally had to turn to stove burner off, step away from what I was in the middle of cooking, and go do some gentle stretches for half an hour. (I don’t even want to imagine what might have happened had I decided that I’d just finish what I was cooking, and *then* go exercise.)

A few months ago, I went through a phase that was absolutely frightening. I had entered into what seemed to be an absolute free fall, no doubt partially related to the extreme Prednisone withdrawal symptoms that I was experiencing at the time. There was much more at play, though–there was depression, there was my almost absolute immobility, there was my being away from home and, on many days, completely alone in a huge apartment in the hustle and bustle of Wall Street in lower Manhattan.

There was the fact that one afternoon, on those crowded sidewalks of New York City, and complete stranger came up to me and told me that I could do it, to not give up.

The thought of giving up never really entered my mind, though. (Although at one point I did admit to a close friend that I wasn’t exactly sure how I could keep pulling myself forward.) The friends who encircled me while I was away from my Home (with the capital “H”)–friends dating back to my high school and college times–were able to seen not only what I was going through personally, but there was also able to see the many challenges that seemed to appear with each new day.

The difficulty of not being able to digest food without considerable amounts of pain. The inability to focus in on text on the computer screen, words on the television screen, or signs in the subway station, even though I had just increased my eyeglass prescription a few weeks earlier. (The inability, for minutes on end, to even be able to see anything, as the inflammation reached the cornea of my eye.) The extreme sensitivity to smell that allowed me to identify what detergents had been used to clean the interiors of crowded elevators, SoHo restaurants, and three-level deep subway platforms. Losing the ability to control my body temps. Sudden skin rashes. Nasal allergies. Losing my sense of taste. And the list goes on, and on.

During this time, those around me often repeated the same statement: they were amazed with my ability to keep moving forward, and with my ability to stay so positive, despite all of the major challenges that I was facing. How was I able to stay so determined, many of them asked. How was I able to stomp on and over every obstacle that seemed to fall in my path?

My response was often one of that I didn’t have a choice. I had to do it; there was no other way. (Looking back I now realize that I absolutely had a choice. I could have gotten stuck, or more emotionally depressed. I could have focused on the negatives, instead of the positives. I had many options on how I handled the challenges in front of me, but I’m glad that the only ones that I was willing to take into consideration at that time were the ones that could–and eventually, would–lead me forward, to a better place.)

During my RA “career,” I have previously dealt with severe depression and suicidal thoughts. While I know that depression did play a part in what I recently encountered, I also know that what happened a few short months ago was so much more; it was something so frightening that even my prior brush with suicidal feelings, in the years following my diagnosis, pales in comparison.

You see, earlier this year I reached a point where my body started telling me that it was giving up.

I reached a point where even when I started listening to what my body was telling me, even when I started making as many changes as I could to help my body that was pleading for help, things just continued to worsen. The fear of what was happening to my body was quickly becoming just as paralyzing as my underlying disease. (This experience was, in fact, much more frightening than my previous bout with suicidal thoughts. Yes, at that time, my mind seemed to be giving up–no doubt a scary situation to find oneself in–but now it was my body that was giving up!)

And even though I could not yet see any improvement, I had to stay confident in the knowledge that I had tapped into a new awareness of what it meant to listen to my body.

I continue to listen to my body, as best I can, and you know what?

My body is no longer telling me that it wants to give up.

My body is thanking me. It’s also telling me that it wants to do more than it’s ever done before.

And this is why, at this moment, I am doing well. Not because the pain is gone, or because I am in remission, but because I have learned that my highest priority, from here on out, is to continue to listen to my body, as much as I possibly can.

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

5 Comments

What Am I Doing?

ParkI am taking short breaks every fifteen minutes, and longer breaks every hour. I am drastically reducing my sugar intake. I am doing yoga three times a week. I am no longer taking Prednisone. I am walking 20-30+ kilometers a week. I am walking up hills. I am walking down hills. I am cutting back on carbohydrates. I am spending less time at my computer. I am checking in on Facebook less frequently. I am going out every day for fresh air. I am taking Vitamin D supplements. I am eating a primarily antiinflammatory diet. I am tapering down my Methotrexate. I am meditating. I am practicing aromatherapy. I am stressing out less. I am communicating better. I am managing my time and commitments well. I am spending more time with family and friends. I am not touching my phone when I sit down to eat. I am reading books every day. I am playing with my dogs. I am spoiling my hands and my feet. I am eating a lot of ginger. I am drinking a lot of tea. I am drinking less coffee. I am smiling more. I am sleeping regularly. I am going to physical therapy twice a week. I am grateful for any and all advice others may offer. I am sending positive thoughts to people who send me hateful messages. I am wearing a wide brimmed hat to protect my skin from the sun. I am using SPF 100 sunblock. I am no longer declaring “flare days.” I am pushing myself to do 1% more today then I did yesterday. I am listening to my body when it tells me it needs a break. I am thinking happy and positive thoughts. I am looking fear right in the eyes. I am strengthening my hands. I am taking deep breaths. I am sitting in parks. I am taking photos. [See photo above.] I am drawing. I am cooking. I am no longer playing the “what if” game. I am enjoying being able to do what I previously referred to as “chores.” I am taking long, hot baths. I am watching less television. I am reading less news. I am eating more papaya. I am no longer trying to resolve problems the second they appear. I am becoming more patient. I am becoming more thankful and compassionate. I am listening to relaxing music. I am not worrying about bills that I cannot pay. I am eating a small piece of chocolate once a day. I am lighting candles. I am lighting incense. I am looking at mountains. I am looking at the sky. I am enjoying the breeze.

I am living.

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

37 Comments

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!

22 Comments