Rheumatoid Arthritis Guy Sculpture

Yesterday on Facebook I posted:

You know you have RA when the Christmas gift that you’re most excited about is a bucket of multicolored modeling clay. (It’s not just fun; it’s also an excellent way to strengthen my arthritic hands!)

This message inspired private responses from multiple readers, including an actual modeling clay artist who sent me photos of the lovely creation shown below. The larger hands pays homage to Show Us Your Hands!, while the little superhero in the middle, well…I think we all know who he is!

Thank you, Donna. Not only did you put a huge smile on my face, but you also now have me dreaming of short animated features, Wallace & Gromit style!

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

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Easier, But Not Easy

Okay, so I’ll admit up front that part of this blog post is going to be a little effed up, but I just gotta get this out.

Yesterday, on my way home from physical therapy, I realized I was at that point where even though I know my pain levels are once again reaching extreme levels, my mind has not yet fully registered this recent (exponential) uptick in pain and inflammation. I was in that weird rheumatoid arthritis limbo, where one leg stands firmly in the memories of my recent week-and-a-half string of relatively low-symptom days, while another leg plunges back into a place where I would never voluntarily go, but which years of experience have taught me that the sooner I begin to emotionally prepare for what the near future might have in store, the better off I will be.

So it really should come as no surprise that last night, I had one of my worst nightmares in a long time. (And it was only just last night, at 3:00 in the morning when I was gasping for breath, that I *finally* realized that I almost always have such nightmares right around times like this, when my mind is once again struggling to accept the reality of what is happening to my body.)

Before I share last night’s nightmare (in the hopes of preventing a repeat tonight), I guess I should first give a little bit of background. I’ve shared repeatedly that one of my favorite things to do is cook in the kitchen (so much so that my story in the Our Hands Can! photo book talks about my love for cooking). I am also a big fan of the Top Chef television show (although speaking of nightmares, I’m not a big fan of having to sit through all of the commercials for the other shows on Bravo TV–all of the constant shouting always makes my head hurt!)

Somewhere in my sleep last night, I started dreaming that I was a contestant on Top Chef. The effed up part? The guest judge was Adolf Hitler. (I kid you not.) Not only did he have a gun sitting on the table in front of him, but he was also in a really bad mood. Thus, while I slept, my anxiety about whether or not my hands would be able to perform accordingly was right around the level of a person who just drank a six-pack of Red Bulls. Somehow I managed to not only come up with my dish (silly, I know, but I remember this part of the dream with extreme detail: salmon with thinly slices hazelnuts and spinach cooked inside of a phyllo dough shell…does such a thing even exist? I don’t even know…buy hey, I was dreaming) but I also managed to cook it as well, despite the fact that my hands were in so much pain. (Little did I know at the time that this final detail was in fact, not a dream.)

The moment I served my dish and saw the nefarious judge smile as he tasted my dish–when in my dream I knew that I was indeed “safe”–I was jolted awake. A split-second later I flashed back to earlier in the afternoon, when I told myself that even though I was fully aware of what was going on with my body, I had yet to fully process it on the emotional level. Once I realized what had just happened (the nightmare, the flashback), I also realized that I was lying in the safety of my own bed, with some of the worst pain (not just in my hands, but in my whole body) that I’ve experienced in weeks, if not months.

And I lay there starting at the ceiling, amazed at the power of this disease. At it’s ability to not not only mess with one’s body, but also with one’s mind–no matter how familiar one might be with it. I was amazed at how quickly it can surge…so quickly that even though one is making a concerted effort to accept what is happening, one is still not always able to quite keep up with it.

But I was also amazed with my body’s–and most importantly, my mind’s–ability to cope with this reality. Sure, my mind may occasionally stumble and start to fall behind…but as soon as it gets its bearings (as it did in the wee hours of this morning), it swiftly moves me back into the lead, and confidently guides me through the challenges which are once again being dropped in my path.

I’ve gotten through the before, though, and I have no doubt that I will get through it again. It’s definitely not easy, but as I go into each new upsurge I now find myself determined to figure out a way to make things just a little bit easier.

Because to not do so, would mean to fall behind. I don’t run this race by choice, but while I’m at it, I’m going to run the best darn race I can.

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

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I Can’t Deal With This Pain

Every now and then a doctor (other than my rheumatologist) will ask me if something hurts. When I say no, they look often look surprised and ask my if I’m sure, because I should be able to feel pain associated with whatever it is that is being discussed. It’s at this point when I usually realize that I need to provide a more explanatory answers, and if often sounds something like this:

All of my body hurts all of the time, due to my rheumatoid arthritis. Chances are that what you are referring to is actually causing pain, but it’s just not registering.

It’s sort of interesting/fascinating/odd/whatever when you realize that the pain of RA often prevents you from feeling–or even noticing–other pains in your body. Once during physical therapy, I wasn’t able to tell that the skin around my wrists was being burnt by overly-hot heat packs. It wasn’t until we unwrapped the bandages and saw the red burns that both my physical therapist and I thought “uh-oh.”

There have also been multiple times when I don’t feel a thing from the currents coming from a professional TENS machine. One physical therapist (different from the one mentioned above) assumed the machine was not working or that the electrodes were not plugged in correctly, as it was turned up to its maximum setting and I couldn’t feel a thing. (Not only that, but all of the surrounding muscles were completely still.) Upon touching both contact points, she immediately got “shocked” and reeled backwards.

And I sat there, somewhat in disbelief. My physical therapist could not even touch the electrodes that were applied to my knees because of the strong electrical current, while I could not even feel a thing.

My relationship with pain has changed quite a bit over the past decade, and I have no doubt that it will continue to change in the future. The more I get to know it, though, the more I continue to learn seemingly contradictory things, such as the fact that my pain does have a protective element.

I’m not referring to the actual pain signals that are being sent to the brain, which is one of the classic explanations for pain.

I’m talking about the numbing aspect of pain; of the idea that the pain can get so bad that I can simultaneously feel and not feel the pain (as odd as this may sound). As much as chronic pain hurts, at a certain point is has become my new normal. It is my new baseline.

And while what I have written up to now is based upon my physical pain, I am no way trying to deny the corresponding emotional pain that is always present. From this perspective, the pain if just as–if not more–numbing…and this is the true challenge: constantly working not only against the physical aspects of pain, but the emotional aspects too.

For too long, I often felt like I was being dragged along by my rheumatoid arthritis. If only I could get one day or one hour off, I thought, then I could rest and recuperate, and be better prepared to deal with this continual challenge. But these rest breaks never came, and my entire self became more exasperated.

“I can’t deal with this pain,” I have often thought to myself. Indeed, I (as well as millions of other who live with chronic pain) have reached levels of pain that are beyond what the human body or mind are supposed to deal with…and if you haven’t been there yourself, no words or explanations will ever be able to truly describe exactly what it feels like.

But if ever there were a “can’t” that should *immediately* be eliminated, it has to be this one…because no matter how bad the pain can get at times, I really have no other choice than to deal with it, as best I can.

I’ll admit, there are still times when “I can’t deal with this pain” starts to slip back into my thoughts. As soon as I recognize it, though, I immediately replace it with:

I can deal with this pain.

Whenever I affirm this to myself, I sometimes find myself chuckling lightly, laughing at (but not taunting) the idea that I could possibly not be in control of how I decide to react to the pain. Once I assert that I can indeed deal with the pain no matter how severe it is, I realize that, I–and not my pain–am in control. I am reminded that it is I who controls my thoughts and my actions.

My chronic pain will never stop trying to control my life. (This is its nature, after all.) I let it take control in the past, and suffered miserably. I can now honestly say that I will never let it take control again, no matter how challenging it gets.

Never underestimate the power of eliminating one “not.”

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

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Knock Me Down, Pick Me Up

After a couple of relatively symptom-free weeks, my rhuematoid arthritis is once again knocking me down. Today I didn’t get out of bed until around 1:00 p.m. Even then, I did’t much get past first gear…although I am proud to say that even as my day passed by in slow-motion, I was able to make it into the kitchen to cook dinner.

I find it interesting how nowadays, whenenever my RA starts to get the upperhand, I don’t have many of the thoughts that used to be have for so many years. No telling myself that I need to be doing something other than resting (or sleeping) in bed. No sadness about the fact that I live with the pain and disability on a daily basis. No fear about what might happen if things continue to get “worse.” Most importantly, no self-blame and no doubt; no wondering what I might have done to “cause” this flare. (I’ve gotten really good with the pacing and with not pushing myself too hard.)

This disease is hard enough, without my being hard on myself emotionally. So when my RA knocks me down, without so much as a second thought I start doing what I need to do in order to pick myself back up…and even though some people may find sadness (I know I used to) in the repetitive nature of what can often seem to be a “two steps forward one step back” type of life (or “one step forward two steps back,” when things are really critical), I’ve learned to appreciate even the beauty of these moments. First, because I’ve done it before and I know I can do it again. Second, because even though it may seem to be the same routine, each time around I make it a point to learn something new.

When I am stuck in bed, unable to even roll over, I no longer think about how much of my day I have “lost.” Even in this situation, whether I am sleeping or lost in my thoughts as my body deals with its temporary paralysis, I am not losing out on life…because this is my life.

Even though I will often say that I am having a good” day, I rarely ever try to tell myself that I am having a bad day. Now this isn’t to say that on more days than not, as was the case this morning, I awake to a body that is not working (in the traditional sense)…but I’ve learned that if, during these early hours of the day, I label it as a bad”day, then it will, well, stay bad all day long.

Because when I label my day as being bad, doing so leaves me feeling powerless in so many way. It will be just another bad day, and I will indeed feel like I am losing out on life.

But if I say that it is a challenging or a rough day, then I feel capable of doing something to change–as much as possible–the situation that I find myself in at any given moment. This allows me to accomplish what I pledged here on my blog when I first started writing so many years ago, which was that I would try to make my emotional well-being less dependent upon the absence or presence of pain in my body. (And which, I am proud to say, I have been quite successful in accomplishing, even as my rheumatoid arthritis continues to progress.)

When it comes to living with chronic pain, if I wait until the pain goes away before I permit myself to have a “good” day, then I might be waiting forever.

Which is why, no matter how much pain I’m in, no matter how much I am unable to move my body–without denying in any way, physically or emotionally, what is going on–I remind myself of two things:

1. This is my life.
2. Today is a good day.

Yes, I continue to get knocked down…I have no doubt though, of my ability to continue to pick myself back up.

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

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