Solving Puzzles

PuzzleOver the past week, I have been dealing with a severe case of lumbalgia, or lower back pain. The muscles are so contracted they they are pressing down on the sciatic nerve, resulting in a sharp, disabling pain along the entire length of my left leg. After daily physical therapy session this past week, though, I am happy to share that the healing process is already in progress.

And while I’m definitely not a fan of the immobility and pain that I experience on a regular basis as a result of my rheumatoid arthritis, it was sort of interesting to experience immobility and pain in a situation that was totally not related to rheumatoid arthritis. (I know exactly what caused this injury – last week at the gym, for the first time, I did an advanced form of full-body abdominal exercise…the good news is that my abs were strong enough…the bad news is that my lower back was apparently not strong enough.)

But as Murphy’s law would have it, as soon as my back starts to get better, my rheumatoid arthritis is starting to get worse.

The good news: this flare is relatively limited to my hands and wrists.

The bad news: things quickly get (exponentially) more complicated when I am unable to use my hands.

Case in point – two days ago I was at a restaurant having lunch on my own. I was merrily going on about eating my meal, when all of a sudden my left hand and wrist completely flared up. Within what seemed a matter of only seconds, I could no longer use my left hand. I don’t know exactly how I felt at the moment. I wasn’t angry, or sad, or mad…I was just trying to figure out how the heck I was going to finish my meal. (I ended up using my one good hand and fork to cut and serve the remaining food, which come to think of it was quite an accomplishment.)

Yesterday afternoon, my left hand once again flared up in a matter of seconds. The good news is that this happened only minutes before I arrived to my afternoon physical therapy session. Instead of spending the hour working on my lower back, we had to dedicate all the time to get my left hand and wrist back into working order.

At the moment my hands and wrists are in quite a bit of pain. The good news is that it’s actually a distraction from the lower-level of pain that remains in my lower back. The bad news? They hurt like heck. Will they flare up again later today, resulting in temporary loss of use? I don’t know…but if they do, I’ll get through it and accommodate accordingly.

If I think of these hand flares as a challenge, a new puzzle that I need to figure out how to solve, then maybe I can make these occurrences just a little less physically and emotionally heavy. Does any one have any hints to the answer?

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

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WendyBird

I was diagnosed with Rheumatoid Arthritis in 2001 when I was 32, and have been struggling to maintain control of my body ever since. I began running in 2007 and have gone from not being able to run for a minute to running a full marathon. I hope my story will inspire others to reach for the stars, even if they feel chained to the depths.

Read more: http://rustedrunner.blogspot.com/

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Focus

focusA week ago today, I took one of the most important steps in battling depression.

I admitted that I was depressed.

And just like that, things seemed to get so much better. Okay, so they didn’t get better overnight…it took me a few days to completely come out of my slump. I did, however,  immediately start occupying myself with things other than my pain, and I noticed that this made a huge (positive) difference in my emotional well-being.

As I previously wrote, last month I was busier than I’ve been in a long time. Although I still took the time to take care of my body and my rheumatoid arthritis, I definitely did not have any extra time to dwell on any pain or shortcomings that I experienced on daily basis.

This month, I’ve been happy that my work schedule has been drastically reduced – I’m currently only teaching one seminar course that meets twice a week. It took me a while to realize that I wasn’t using my extra time as well as I could be using it. I started sleeping in late. I started spending more time lounging around my house. I started spending more time thinking about my chronic pain. Rheumatoid arthritis was once again becoming the main focus of my life.

So I decided to make some changes.

I went back to the gym. (My membership had expired a few weeks ago, and I had not yet renewed it.) I started spending more time reading at coffee shops. I started taking long walks. This past Sunday, my husband and I went to eat  lunch at a place that I’ve always wanted to go – it’s a large colonial patio with good food and live Tango music! I went to a museum. I went to a museum again.

Any even though my body continues to have issues on a regular basis, I feel so much better.

Earlier today I once again went to my neighborhood health clinic for an anti-inflammatory injection. (My left sciatic nerve is once again giving me a lot of problems.) As I was leaving, I had a funny thought.

“There’s always something wrong with my body…but I always know exactly what to do.

Experiencing this confidence felt nice. Yes, if it’s not my hands it’s my ankles or my back or me knee of a combination of the above or now the opposite side of the body…and even on a few rare occasions none of the above. Each day is always different from the previous day. Something is always wrong. My immune system, after all, is continually attacking my joints.

But I always know exactly what to do.

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

P.S. Thanks for all of the kind comments in my previous blog post!

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Confessions Of An Optimist

Rheumatoid Arthritis Guy is very grateful for all of the messages of support that he continually receives. Yesterday, one of my longtime readers Carla wrote the following comment here on my blog:

sunAs you know, I’ve been following your blog for a while (almost since I was first diagnosed more than 2 years ago). You seem to have made such great progress in your life, and although the disease hasn’t seemed to relent, you’ve seemed to fill your life back up with good things and a great outlook. I’ve been very pleased to watch this transformation.

My email inbox is also full of similar messages. (If I have not responded to your email, please know that I do read each and every email that is sent to me, and eventually I do get around to replying to each one personally.) About a week ago, I received the following message:

sunI just wanted to say thank you for having your website. I have felt sooooooo lonely since I started going through my first RA flare. I have been crying so much because I don’t know how to get anyone to understand this and now I see that I am not alone. There are many others who are my age and younger going through what I’m going through and it helps to know that it’s not just me. So thank you, you’ve helped me find some hope!

I can’t say how much these two messages, and the many other similar ones that I have received over the past year and a half, have helped me. Anyone who lives with an illness like Rheumatoid Arthritis knows why it is called “chronic” – it just never goes away, no matter how much we might want it to.

So I am in no way trying to undermine the importance of the 99% of the messages that I receive that are optimistic and supportive, but I find myself in a situation where I need to respond to the other 1% of the messages that I receive. I try to ignore them and move on, but the truth of the matter is that they do bother me.

What type of messages are these that I receive, you might be asking? They are messages that tell me that I have no idea what it is like to live with “real” pain and “real” rheumatoid arthritis. Some of them even refer to my rheumatoid arthritis as a “claim”. (As if all along I’ve been making this up?) Or even worse yet, the classic “your RA is not as bad as my RA”.

So I have a confession to make. Yes, I really do live with rheumatoid arthritis…and no, I have not always been the optimist that I am at the moment. For all too long, the dark shadow of my chronic illness and pain hung over my head, and pushed me further and further down. I have reached lows in my life that I would never ever want any other person to ever have to experience. I thought that I would never be able to leave this place, no matter how many outpourings of support and helpful hands that were offered by people around me.

But I proved myself wrong. My optimism does not mean that I no longer live with what can be at times unbearable pain…it just means that I have figured out how to get through it. Sometimes getting through it means giving in, being angry, being sad, and wondering what the hell it means to live a life like this, day after day. My secret is that I allow myself to experience these emotions without getting stuck in this place. Even if I don’t know why, I just continue to be positive and try to focus on the good. Trust me, it works.

I once again find myself coming back to one of these dark spots. Just today, my rheumatoid arthritis grabbed on hard…and no matter what I did, I couldn’t shake free from it. I didn’t really get moving until around 5 pm (yes, that’s pm!) in the afternoon. During the afternoon, I didn’t even have the energy to change the music on my iPod. (Luckily, I was listening to music that I hadn’t listened to in a long time.)

Do I love days like today? Honestly, I don’t. But my evening has been okay. I even went to the grocery store a few hours later to do some shopping. And I am grateful that today was a holiday (Day of the Dead), so my obligatory day in bed did not have any effect on my work commitments.

So I’m not always happy, cheerful, and in a good mood. But when I’m not, I constantly try to remind myself what it means to be happy, cheerful, and in a good mood…and this counts for a lot.

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

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Sleeping Through My Pain

personal moonEarlier today, I was thinking about the role that sleep plays in my life.

My relationship with sleep has changed quite a bit over the years. When I was an architecture student for eight years, sleep was something I barely knew. On one too many nights, I cranked through drawing after drawing and model after model, only to step out on the terrace and see the sun rise over lower Manhattan or the city of Cambridge. My relationship with sleep – or my lack thereof – was by no means the healthiest it could be.

A couple of years ago, I had another unhealthy relationship with sleep – but this time things were on the other extreme. I slept too much…and even though I didn’t readily admit it at the time, I slept in order to try to avoid my pain and my life with chronic illness. It was a viscous cycle. The more I slept, the less mobile I became. The less mobile I became, the more I slept. Then depression took hold.

Over the past nine months, I think my relationship with sleep has improved quite a bit. I don’t get too much, and I don’t get too little. Most importantly, I no longer try to plan ahead and define exactly how much sleep I might need at any given time. Instead, I listen to my body and adjust accordingly. If I need more sleep, I work it into my day. If I need less sleep, then I still try to not push myself too hard.

Sometimes my sleep isn’t as relaxing as it should be. I think this has been the case over the past few days, as my aches and pains have moved up a notch. At times, I wake up feeling not fully rested, and am bothered by all of the anxious thoughts that invaded my dreams the night before. I’ve come to learn that this is a sign of an increase in my disease activity, and work even harder to give my body the rest that it needs. Sometimes I even resort to taking some sleep medication – although I limit myself to half a pill four nights in a row.

Yesterday afternoon, I was passing a typical lazy Sunday here at my house. At one point I felt (and actually could see) the joints in my left hand and wrist moving around. Since it was Halloween, I was appropriately reminded of the werewolf horror movie where the hands stretch out and then get covered with fur. Luckily I had no abnormal growth of hair, but it was very reminiscent of a slo-mo version of these scenes that most of us are no doubt familiar with.

This wasn’t the first time that my hand and wrist have been so stretched apart by inflammation. This has happened many times in the past, and in those cases I usually screamed out in pure agony. This time, however, I decided to roll over and take a nap…and despite the intense pain, I actually fell asleep.

Which brings me back to the beginning of this post, when I was thinking about my relationship with sleep. I no longer use sleep to escape from life, but I do use it to cope with some of my most absolute worst episodes of pain…and I think this is okay.

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

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