Delayed Reaction

On Friday evening, I found the mother lode of pain located – conveniently enough – in my right wrist. The most intense episode lasted about an hour. When it passed, I proudly reminded myself about how such episodes in the past used to emotionally knock me down for days, which did not seem to be the case anymore. Sure, these episodes continue to be difficult to get through, but at least I seem to be a little more “prepared” for them.

Yesterday afternoon, when I was at physical therapy, we once again reached the point where the maximum electrotherapy current was being delivered to my ankles, and I couldn’t feel a thing. In the past, I used to break down right at that moment, as it served as a objective and stark reminder of exactly how much pain I was in. Yesterday, I held my head up high as I remembered this, and told myself that I would get through this episode as I have gotten through other episodes.

Later during the day, I completely lost the use of my left hand for more than an hour. As luck would have it, this coincided with the time when we sat down to eat a meal. In the past, I would have have been reluctant to ask for help and would have instead struggled to cut my own food, resulting in even more pain. Yesterday, I calmly asked for help, and even through I am left-handed, I used my right hand to lift my fork. When a small glass of jello was served for dessert, I propped it up in between my knees and scooped it up with a spoon – without so much as a second thought. I once again felt proud of myself.

And as evening came, I continued to marvel at how well I seemed to be coping with all of my latest challenges.

But when nighttime arrived, and when all of my joints (including my shoulders – those have not been affected in months) were simultaneously experiencing intense pain and inflammation, my wall of cheery thoughts and personal pride came tumbling down. All of a sudden, it was once again just too much to handle.

So I cried. (Sobbed, actually.) My mind raced around, and I barely knew up from down. I tried reminding myself that the worst would eventually pass (which it did), but during those many minutes the pain seemed to be more than I could bare, and all of my connections with the world around me seemed to disappear.

Little by little, they started to come back. My partner ran around in the way he knows how to during moments like those, and plugged in the aromatherapy machine (whose scents always give me a sense of balance during crisis moments like this), heated up a buckwheat pillow to wrap around my ankles, and prepared a cup of hot tea.

So yes, I crumbled pretty hard last night. I used to be ashamed of moments like the one from last night, but not anymore. I got through it, as difficult as it was. And in the end, isn’t this something to be proud of?

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

Grand Piano

Shari says:

I’m 35 and was recently diagnosed with RA (although I tried to convince the rheumatologist otherwise!).

For several years I dismissed all the symptoms as nothing more than the stress of being a recently divorced single mother, trying to make ends meet as an administrative assistant by day and a piano instructor in my home studio by night (my own super-hero identity in the making?). Not once did I think my poor health was due to anything other than sheer exhaustion and stress.

So when the rheumatologist confirmed what my family doctor speculated, I was in shock. I went into denial. I tried to convince myself that I could be healthy if I just tried harder to manage the stress better and stuck to a strict diet/exercise plan.

In fact, I think I still am in denial at times: I’m struggling, stubborn, and stupefied.

I agree with others that a diagnosis of RA causes feelings of isolation due to the general population’s lack of knowledge about it (myself formerly included). I’ve always ‘burned the candle at both ends’ to take care of myself and my family, and admitting to myself that I cannot physically do something was/is very upsetting.

But reading your blog and the interactions with others with RA has helped immensely. I’ve laughed a lot, and laughter is the best medicine of all, right?

And now I have all the more reason to finally purchase a grand piano before the age of 40….it’s going to happen, and I’m going to play Chopin on it beautifully, with all my students on stage with me, and my two wonderful children at my side.

Thank you, and best wishes.

It’s A Small (RA) World

Okay, two messages that I received just made my day.

Yesterday, two readers of this blog both realized that they were at the same college in the United States, and met each other in person. One is a student, and the other is a faculty member.

“Neither of us had known anyone else in the area with RA before today.”

That’s definitely worth a Friday afternoon smile!

Drip, Drip, Drip

Faucet DripEvery now and then, I stop everything I am doing and suddenly realize exactly how much pain I am actually experiencing. Today was one of those days. Maybe it was because my physical therapy session this afternoon was twice its usual length, or maybe it was because my physical therapist asked me to come in three times a week for the next couple of weeks in hopes of decreasing the intense inflammation that is once again spreading through all my joints. But that one drop of pain dripped off the faucet, and things once again felt like they were spilling over.

In the matter of a handful of minutes, I had the beginning of an anxiety attack. Three times. Just when I thought it was passing, it seemed to come back. Having my hands, knees, and ankles simultaneously hooked up to electrotherapy machines did not necessarily help…although it was not necessarily feelings of claustrophobia that I was experiencing…instead, it was the realization of just how bad the pain actually was.

I have noticed over the past year that my pain thresholds have increased dramatically. I have come to think of numbness as sort of a protection mechanism. I have often had that feeling when I know that I am in tons of pain, but I cannot actually feel the pain. All of this is fine and dandy, but what it means to me at the moment is that once the pain finally registers, it has already shot off the charts.

I used to wonder if I erected mental barriers against the pain. Maybe that used to be the case. (Actually, that probably was the case.) During the past few months I have often found myself embracing and connecting with my pain, so I don’t think this is the reason for the sudden overflow of pain. Embrace my pain? Sounds odd, I know…but for years I have tried to escape my pain, and that only seemed to make things worse. Embracing my pain doesn’t make the pain go away, but it does make things much more manageable.

And during the last month, as I have returned to work for the first time in a long time, I have realized that there is a lot to be said for the “management” of my illness. If asked, I wouldn’t necessarily say that these past few weeks have been particularly difficult or particularly easy. I used to apply these labels to the ease with which I could or could not do things, but I no longer find them to be as useful. Instead, I like to think that I am “managing” as best as I can…and that I am continually looking for ways to “manage” things better…and while I’m at it, I might as well try to have some fun!

Sleeping in during a particularly rough morning. Check. No guilt. Double check. Except for Wednesday mornings, when I have to go in early for office hours. One day a week. I can manage that. Super extended afternoon naps from which I must be woken up before I sleep on through to the next morning. Check. Having to teach class five days a week at noon? Only a few weeks ago the thought of committing to this absolutely terrified me, contrary to what I may have written here on my blog…but the surprising thing is the thought of having class the next day gives me something to look forward to. Dealing with the ups and downs associated with teaching a college class is actually a welcome break from the monotony of chronic pain.

But I continue to learn that if I translate my fears of a distant and unknown future into pleasant thoughts for today, everything will be okay. Even if it seems like rheumatoid arthritis is pulling us back, it’s important to know that we continue to move forward.

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

My Bum Thumb

Understanding and Living with Rheumatoid Arthritis

Cari Elliott is a sophomore Mass Media student at Henderson State University in Arkadelphia, Arkansas.  She loves to write, even when her hands (and her bum thumb) do not.  After obtaining her degree, Cari hopes to become an author, preferably of science fiction and fantasy novels, but she would be happy writing about anything.  Cari played the snare drum in her high school’s marching band, but has since then hung up her sticks due to the RA.  While Cari isn’t writing, she can be found scrap-booking, painting, playing video games, jamming to some rock ‘n’ roll tunes, and spending time with her family, friends, and boyfriend, who encourage her to live life to the fullest, despite her disease.

Cari hopes to learn about everything and anything, travel everywhere, meet many people of many cultures, learn several languages, and experience everything life has to offer.  And no silly disease can stop her.

This bum thumb used to not be so bum.  While it is currently on the mend, the bum thumb prefers taking  naps in it’s little splint bed, taking long baths, and relaxing all day.  On better days, the bum thumb likes to let Cari write.  But it’s a very picky thumb.  xD

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