When I am going through a particularly difficult flare, my cone of focus becomes just a tad bit smaller. World news events are forgotten…which is sometimes a good thing because they can be so depressing at times. Being the eternal optimist, I recognize the good that results from my moments of mental fog, of forgetfulness, and of feeling that once again I am walking on the rim of the canyon that hovers above deep depression. What is the good result of the above items that are often considered to be elements that should remain outside of our lives? For me, these periods force me to turn inwards, to get to know myself a little better.

To use this most recent occurrence of pain and disability to move myself one step forward towards a better place, despite the fact that my body seems to be moving towards a worse place – if I continue to implement this as one of my guiding principles, I feel full of hope, ready to deal with any problem that life presents to me or with any disability that my body presents to me.

I have noticed that after dealing with a flare for a couple of weeks – normally around the time when in the past I used to feel like throwing in the towel and losing hope – I now feel the exact opposite. I feel like a wind (I don’t know where it comes from, to be honest) fills my sails and propels me forward to a place that I may not yet understand, but which I know is a positive and healing place for me at this point of my life. Normally, the first burst forward involves my emotions and my mental state of being, and then is followed by a similar burst forward in my physical condition.

This past weekend, I had that first burst – and a little bit of the second burst. Instead of filling my mind with thoughts such as “how long will this last?” or “I hope my excruciating pain does not come back”, I instead decided to use my clear mind to think about what I have just gone though once again, about what I have learned, and how I can take that next step forward which will help me next time I undoubtedly go through another rough period.

I found myself creating a list…a list of aspects of living with rheumatoid arthritis that are usually (at least for me) regarded as some of the most negative aspects of living with RA. Knowing that I have experienced them many times in the past, and that I will experience those many more times in the future, I thought it would be fun to see what positive and optimistic – yet realistic – spin I could place on these “challenges”.

So here goes…

The Unpredictability of Living with RA

Right now I am doing so-so, later this afternoon my wrist might be in so much pain that I can barely move it. Tomorrow I will have difficulty getting out of bed. The day after I will jump out of bed with no problems, right before the sun comes up.

One of the aspects of living with RA that has been most difficult for me to accept has been the unpredictability that arises when living with this chronic condition. Sometimes I feel like I should not make plans for the coming day or for the coming week, because I don’t know how I will feel once that moment arrives. Other times, I wish that I could just have all of my bad days grouped together and all of my good days grouped together…that way if I have a good morning, I will not start feeding myself thoughts of delusion such as “ahhh, the worst is over – finally!”

It’s a roller coaster ride, definitely…but the more I think about it, I have never had much of an aversion to the rote or to the mundane. The same things day in and day out…that’s sort of boring to me. I resigned from my corporate job when I was 29, after deciding that I wanted more adventure in my 30’s. The morning commute…sitting at a desk…attending meetings…emails…reports…deciding where to lunch…afternoon commute…and so on just did not sync with the person who I thought I was. Sure, the leap away from a high-paying job with good benefits was a little scary, but looking back I would not have done anything different.

So living with rheumatoid arthritis definitely brings a lot of uncertainty into my life, – but with it, it also brings adventure. So if I frame this as an adventure in which I am constantly learning, while never knowing what lies around the corner, I think I will begin to cope more easily with the continual up-and-down rollercoaster ride that living with rheumatoid arthritis seems to be. And in a way, this adventurous aspect of my illness certainly fits in nicely with the individual I have become during the last six years since living my corporate job.

The Oh-So Excruciating Pain

Okay, here’s a good one. The pain that sends constant messages of “don’t move” to my mind, the pain that clouds my emotions and makes me feel on edge, the pain that sometimes feels like it will NEVER get better much less go away.  What good can possibly come out of living with this type of pain?

First of all, living with this pain has taught me to learn to listen to my body. My body is sometime that I should respect at all times, and it not something that I should push around past its limits. While I was in college and early on in my professional career, my norm was to push my body hard…but all in the wrong way. I was not pushing it to exercise, or to explore a new diet, or to learn the benefits of rest and downtime. Instead, I was pushing it to produce…and produce…and produce even more (rest could always come later).

Having lived with chronic pain for years now, I have learned that rest comes now. I have also learned to shed myself of any negative attitude that I had previously associated with rest or down time. Often, the best thing that I can do for myself is to do absolutely nothing. During these moments, I give my body a chance to heal from the constant attack of rheumatoid arthritis. I allow my joints to rest. I allow myself to grow.

And since the pain is ever present, I am slowly learning to not be afraid of it. Instead, I am learning to walk toward it…to get to know it a little better. I am figuring out that while it seems like one monolithic mass hanging over me all the time, it is actually quite nuanced and complex. Oh I know, the thought of getting closer to the pain and not further away is both frightening and contradictory to the way in which I have previously related to it…but since it’s there, and since it’s a part of me – for better or for worse – I will once again take a leap into the unknown.  The more I identify with this pain, the more I incorporate it into my life and accept is as a part of my being, the better off I think I will be.

“This Will Never End”

So be it. Let it remain a process, and not a destination point. All too often, when I am going through a relatively good period where my symptoms are low to non-present, I slip back into my routine of the past: do too much, don’t take care of my diet, start slacking with my meds, don’t allow myself periods of mental rest, lower meditation and other helpful activities on my list of priorities, and so on. I continue to do this, even though the results are often the same. Things go back to the point where they were before I got “better”, or the even get worse. Then, I scold myself for not having yet learned this lesson.

Frequently in the past, the thought of “this will never end” has been one that got my heart-racing just a little bit faster, that pushed me over into an anxiety attack, or that fueled feelings of losing hope. Ask anybody close to me in my life, and they will tell you that I spoke these words often.

I have a right to speak these words I have no doubt…after all, rheumatoid arthritis is a chronic illness for which there is not yet a cure. I will continue to speak these words, as this is the reality of my situation. But rather then invoking them in order to heighten my fear, I will now work on using them as a reminder: a reminder that I need to continually take care of myself. I need to take care of myself not because I live with rheumatoid arthritis, but because this is what is good for me as a person.

And in this way, maybe I will finally learn and listen to the lesson of not overdoing things, no matter how good or how bad I am feeling.

The Dark Tunnels

The depression that returns, no matter how many advances I have made in living with rheumatoid arthritis. The fear that comes out of seeming nowhere, that often leaves me in tears. As I have written before, I used to consider these feelings as signs of failure…signs that I am not coping well with my chronic illness.

Well you know what? I now consider these feelings a sign of my success. I am accepting the effect that rheumatoid arthritis has on my body AND on my mind. I now know that these feelings go hand-in-hand with my flare. It doesn’t matter if my last flare was last week or last month or last year, when I go back into a flare I am going to experience many of the same emotions.

I used to think that in order to get better, that I needed to stop experiencing these emotions. I now know that in order to get better, what I need to do is recognize and accept these emotions when they are happening. This allows me to understand these feeling and react to them accordingly. Just as my body gives me signals of the distress it is feeling, so too does my mind. So my journeys through these tunnels have gotten less scary. I have come to accept them as a necessary part of the process of going through flares and living with rheumatoid arthritis…and I know that passing through these tunnels will indeed get me to a better place.

Deformities

Some of my deformities are “temporary”: my right wrist gets so swollen that anyone who looks at it can see that something is out of place. While these types of deformity might appear to be temporary at the moment, I make no pretense of the fact that every occurrence is indeed adding some permanent damage.

Some of my deformities are “permanent”: my pinky fingers on both hands are beginning to curve inwards, while the joints on my toes are visibly drifting from their proper location. When I do warrior pose during my yoga sessions, as I stretch out my arm and allow my gaze to float over the ends of my fingers, I notice that some fingers curve upwards while others curve downwards…sort of like I’m permanently pressing down on a couple of piano keys.

When it comes to accepting my deformities that result from living with rheumatoid arthritis, I have come to accept that the hardest part is not accepting the deformities – temporary or permanent – that are already visible. Instead, it comes from accepting the deformities that might or might not take place in the future.

As it should be hard…it’s hard to accept something that does not yet exist. Recently, I have found myself thinking a lot about what might happen to my body down the road. Much like I am working on changing how I relate to “this will never end” I am also trying to change the way I relate to “what will happen to my body in the future?”

I no longer see this thought as one which provokes fear. Instead, I think of it as a way for preparing myself for something that has a certain probability of entering into my life since I live with RA. I don’t think I am being overly-optimistic (i.e. “I will not have any deformities beyond where I am at the moment”). Neither do I think that I am being overly-pessimistic (i.e. “I will lose the use of my hands and feet and require the use of a wheelchair”). Instead, I think I am preparing myself for whatever might happen. Sure I can’t cross that bridge until I get there…but if I at least start to think about it, hopefully I can be a little more ready to cross whatever hurdles might appear in my path

And in regards to the deformities that I described at the beginning of this section…I can’t say that I have fully accepted them. But, I have made this my goal.

*****

I definitely had a milestone weekend these past few days. These are my feeling at the moment. I look forward to returning to this post during my next flare.

This is my life.

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

Those who have chronic diseases did not choose to become heroes, life chose them. -Chuck Gallozzi, motivational writer

Rheumatoid Arthritis Guy once again find himself in a downswing. The funny thing is, I actually feel sort of good – much better than I did during previous downswings.

I don’t necessarily want to say the dealing with the ups and downs of living with rheumatoid arthritis becomes any easier…the pain is so intense, that not even my memories can accurately record how bad it can get. Each time my pain returns, I still continue to be surprised at how much it can hurt. Is is only during these worst moments that I can totally relate to similar episodes that I have passed through before.

Throughout the day, is feels like two huge boulders are grinding down on each wrist. The tendons (?) on the outer side of my hands get so tight, that my little fingers start pointing out in the weirdest directions. My wrist joints get so inflamed, that the swelling is visible and the joints stick out.

The only aspect of this episode that worries me somewhat is that I am still on a Prednisone taper. I hadn’t expected this level of symptoms to return until I finished my current corticosteroid treatment, but hey – what can I say? If there is one thing that I have learned about living with rheumatoid arthritis it is that it always keeps me on my feet. (That would be literal, of course…because when it affects my ankles and feet as much as it is currently affecting my wrists and hands, the last thing I do is stay on my feet.)

I find myself at an interesting stage. Even though I still do get occasional waves of intense fear, overall I feel okay. I’m trying to do my best when it comes to taking care of myself, and I am constantly looking for ways in which I can take care of myself even more. Instead of concentrating on my symptoms – as limiting and painful as the can be at times – I find myself focusing in on the positive aspects of my life. Previously I wrote that my list of things that I can do will always be long than my list of things that I cannot do. Recently, I have been reminding myself of this on a daily basis.

In the past, period like the one in which I currently find myself were marked by one frame of thought: “Get through this!”. Of course, I still am motivated by moving forward and getting past the worst periods…but I also find myself okay with where I am at the moment. This is my life. I can adapt accordingly in order to make sure I get enough rest and do not bring additional harm to myself…but in the end, life goes on.

I don’t want to sit on the sidelines and be a spectator. I would much rather be a part of the game.

Living with an illness that is both chronic and crippling raises many challenges. One of the more obvious ones is the sense of self-image. I look at myself in the mirror, at my thinning hair, at my slight limp in my left ankle, and at my crutches. Five years ago I would have never imagined that any one of these aspects would have been a component of my self-identity…but now they are ALL a part of who I am. Just like this is my life, this is also the person who I have grown to become.

I used to react strongly against aspects of my illness which I thought were not a part of who I was. Just as I continue to learn that life – and living with rheumatoid arthritis – is a process, I also continue to learn that my illness is an integral part of a the person who I am. The odd thing is that by accepting this, my disability actually becomes a less identifying factor of my self-image. It’s funny the way things work sometimes, no?

Some days I choose to highlight one aspect of my self over another aspect – this is constantly changing, and it one of the beautiful things about life. I’ve grown to accept the impact that rheumatoid arthritis has had on my body up until the moment, and I hope to remain as open and accepting when it comes to the impact that rheumatoid arthritis will have on my body in the future.

Whatever happens to my hands, to my wrists, to my knees, to my ankles, to my toes, and to any other joint, one thing will be certain – I will still be me.

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

Both she and I live with rheumatoid arthritis.

What made my visit even more special was the fact that – for the first time in my life – I was sitting down face to face with another person so that both of us could share our stories about living with rheumatoid arthritis.

To be honest, I took me a while to build up the nerve to go through the visit. Oh, it had nothing to do with her. It was all me. By meeting another person who has spent a lifetime living with rheumatoid arthritis, the rheumatoid arthritis that I was actually struggling to confront was my own, and not hers.

Was it okay for me to cry if I felt the need to?

How was I going to react to any visible deformities?

Am I really doing the right thing?

These and many other thoughts raced through my head in the days leading up to our visit.

Just a few minutes into our conversation, all of my fears were put to rest. In front of me I had this incredibly strong woman who has been living with rheumatoid arthritis for almost three decades. And while her body showed visible signs of her long struggle with rheumatoid arthritis and osteoarthritis, her person radiated nothing but strength.

This physically fit thirty-something guy couldn’t help but look up to this feeble lady with anything other than amazement.

Her first words were “the pain – get used to it. Learn to accept it, and make it part of your life, because it’s not going away.” Her statement was not the least bit cruel. Instead, she spoke with wisdom and experience. As I have only recently begun to accept (again) the chronic nature of RA pain, I really appreciated her advice.

She then proceeded to show me her hands. The wrists were permanently swollen and out of place, as were the knuckles. One pinky finger is scheduled for an upcoming joint replacement. These hands were a true testament to time, and they were beautiful. She had no shame whatsoever as she held out her hands so that I may inspect them. (I silently kicked myself for even worrying how I might react when I saw her hands.) If only everyone could be so proud.

We traded stories of different medical treatments and their sometimes horrible side-effects. She could not handle Arava, but is on methotrexate. I could not handle methotrexate, but am on Arava. We swapped homemade remedies for protecting our stomachs, and shared information about nutritional supplements.

She pulled a large tube of Aspercreme out of her purse, and gave it to me as a gift. Little did she know that just a week before, my sister had sent me a box of arthritis products and orthopedic aids via international courier – but the large tube of Asprecreme that was originally included in this package had to be removed due to customs regulations. Somehow, a tube of Aspercreme still managed to find its way into my hands.

We wrapped up our visit by talking about the importance of continuing to carry out activities that bring pleasure to one’s life; that by spending time on something we enjoy it is possible to temporarily get our mind off the pain and disability. In her case, knitting has become too painful but weekly bridge is something she continues with a vengeance.

As I walked home that afternoon, I couldn’t help but think back to some arthritis forum messages that I had recently read online. Some women, who have lived with rheumatoid arthritis for twenty or thirty plus years, voiced their concerns about openly discussing their experiences of living with rheumatoid arthritis in front of us “newbies”. They thought that by sharing the details of their lives with RA, they might scare those of us who have only recently started on this journey.

To all those women who have lived a lifetime with RA, please let me say that when I hear your words and your stories, I am inspired by your lives and by your strength. Please do not think that you are scaring me. During some of my most difficult flares this past month (which have been some of the toughest moments yet), messages and posts from people who have lived with RA for decades have flashed through my mind – and I often find myself thinking: If they can get through this, so can I!

Thank you for the inspiration.

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

Rheumatoid Arthritis Guy is always interested in exploring the world of design, and was more than happy to recently stumble upon this concept of the beauty of imperfection. He also finds it interesting, the ease with which one can get caught up in the pursuit of perfection – when in reality there is no such thing as perfection.

Is it not better to achieve the possible instead of continually trying to attain what is impossible?

During the past few months it has been very difficult at times to look at my hands and feet when they are experiencing moments of extreme inflammation, resulting in their temporary disfigurement. During some of the earlier episodes I blocked the mental image so completely that it did not pop back into my mind until a day or so later. When this mental image did come back to my mind, I still had a hard time accepting that my hands and feet could indeed really look like that, even temporarily.

I don’t think I have reached full acceptance yet, but I am slowly coming to terms with the fact that any deformities caused by my rheumatoid arthritis are a thing of beauty, something that makes me unique. They are my imperfections.

A couple of days ago my yoga instructor called me to see how I was doing. She knows that I have rheumatoid arthritis, and saw firsthand my physical decline during the past few weeks when it came to my hands and feet. I had not been in class for about two weeks, so I guess she figured it was time to check in on me and see how I was doing. (I just found out today that the entire class was huddled around the phone as she called me, but unfortunately I had not yet woken up that day and ended up having to return her call later in the day.)

After bringing her up to date on the latest, I was surprised when she told me that I was more than welcome to continue going to class. She told me I could follow the routine during the parts that I was able to do, and I could make my own modifications during the parts that I was not able to do.

This morning I went back to the gym. With my crutches tucked away on the side and a folding chair set up for me to use during the standing part of the class, I returned to my yoga practice.  The synchronized nature of the room – with lined up exercise mats and people performing the routine with almost perfect timing – was definitely broken. (At moments I am sure it looked like a frat boy doing his best synchronized swimmer mock-impression.) I was originally concerned about the impact my presence might have on the environment of the yoga studio, but I later thought to myself – this is a moment of wabi-sabi, and it sure is beautiful.

After class the people who know I have rheumatoid arthritis told me it was great to see me back in class. A few people who did not know I have rheumatoid arthritis approached me to inquire on my condition. I gave them a short explanation, and they too told me that it was nice to see me back in class. One of my classmates has a mother who lives with RA, and I really appreciated the words of support that she gave me.

I had gone into the class wondering how much of the routine I was going to be able to follow, in terms of a percentage. I left with the knowledge that I got to know my body a little better this morning – and perfect or not, this is definitely not something that can be summed up in a number. And in focusing on my body instead of an ideal, I probably learned just a little bit more about the true nature of yoga practice.

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