New RA Blog: Managing Rheumatoid Arthritis

I’m Matt, I live in Omaha, NE. I’m 33 years old. I’m married with 2 daughters. I love the women in my life, hockey, skiing, golf, hiking, biking, camping, fishing, hunting, softball, football, baseball and cooking.

I have RA. And it sucks.

I was finally diagnosed with RA at the tender age of 26, after spending nearly a year as a human pincushion and lab rat for half the doctors in Omaha as they ran test after test after test and couldn’t come up with anything. So, after failing to categorize whatever it was that hurt so bad, they said “You have a high Rheumatoid Factor, so I guess you have RA. Here’s a referral.” Really? I didn’t buy it.

Dear Me, Please Read This During My Next Flare!

“Failure is success if we learn from it.”
-Malcolm Forbes

Life Is BeautifulDuring each flare, there comes a time when I know that I have once again made it through the worst. When I reach this moment, even though I still have quite a ways to go before I can fully declare such a flare to be over, I do notice that my bad times get just a little less worse, and that my good times get just a little bit better.

In this current flare that I have been experiencing for almost the past month, this point of realization actually occurred a few days ago, on Christmas Eve. And while I experienced another setback on the day after Christmas, I did so with the realization that while what I was taking seemed to be one step back in my healing process, I had no doubts that the following days would only bring an improvement in my overall condition.

Today confirmed that my beliefs were correct.

I left my neighborhood today, for the first time since Thursday. On my way out the door, I decided that instead of taking my crutches, I would take my cane. This decision was not made by some mental process that was trying to push me to a point beyond where I was…instead, it was the result of a careful evaluation of my physical state over the past few days. My body was telling me that all it needed was a cane – and I listened.

I had two stops to make, which were probably slightly more than half a mile apart. I had every intent of taking a taxi from Destination A to Destination B…but when I finished my first errand, a midday summer rain shower had just passed and the sun was once again shining. Instead of immediately jumping into a taxi, I decided to walk a little further – I could always catch a taxi on the next block. Before I knew it, I had walked the entire course. I waited for the (somewhat now) regular episode of inflammation and pain in my legs and ankles, to let me know that I had over-exerted myself…but it never came.

Hours later (just a few minutes ago, as I type this) I finally did get one of those episodes in my left leg. But instead of lasting for more than an hour, it lasted only a handful of minutes.

So, yes, I know that this flare is not yet over…but I know that it soon will be .

And for me, my feelings of success come not with being able to move around with more ease, with leaving the house with my cane after weeks of being dependent upon my crutches, with not having cried out in pain for more than a week now. It comes with the calm understanding that, once again, I have made it through a severe flare…and with the increased confidence that, when the next flare comes, I will get through that one as well.

Sometimes (quite often, actually) when I am in the midst of a major flare, it seems like it is NEVER going to end. It feels like so much of my life is about failure: I can’t do this, my hands can’t do that…and the list goes on and on. It’s nice to have these thoughts flipped on their head, and to once again be reminded that each and every day that I live and cope with rheumatoid arthritis is a success in and of itself — even more so on those days when I directly encounter the physical failings of my body.

Whether I have more pain or less pain tomorrow suddenly seems less important. What does seem to have gained priority is ensuring, no matter what, that I do everything within my control to make it as great a day as possible. I know this is much easier for me to say now, especially since the severity of my flare is decreasing…but if I bookmark this page and remind myself of and think these thoughts next time I’m in the darkest days of a flare…well then…that would be even more of a success!

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

Christmas Gifts

christmas-giftsEarlier this week, if anyone had asked me what I wanted for Christmas, all I would have said was one thing: less pain. And while we’re still more than 24 hours away from Christmas Eve celebrations, for the moment at least, it seems like my wish is coming true.

True, I am still experiencing a considerable amount of pain, especially in my left leg, but at least my hands have not undergone any episodes of severe inflammation and pain in the past couple of days. In these days right before the holidays, having this extra strength in my hands really does seem like a nice gift. Walking around with my crutches is just a little bit easier…and this counts for a lot.

I went to campus on Tuesday and administered the final exams for my two classes and said goodbye to my students. (I’m now on vacation until the first week of February!) Later that evening, I went out to dinner and a movie. Yesterday, I attended the holiday bbq that was being given by the academic dean of my university. Earlier today, I went out to buy some Christmas presents for my husband. Since I can’t carry much while I am using my crutches, a friend was kind enough to accompany me and give me a helping hand (literally). On my way to shopping this morning, I bumped into my rheumatologist on the sidewalk. On my taxi ride home, I drove by my psychologist.

In general,  it was a morning full of lots of little reminders of the wonderful personal and professional circle of support that has helped me and continues to help me when times are rough.

The little kid inside of me anxiously awaits the gifts that I will find underneath the tree tomorrow night. The adult inside of me, though, knows that true gifts are given each and every day.

My wonderful husband, who continues to be by my side…for better or for worse…and who knows all of the little secrets of how to help me get through my most difficult moments of pain and disability. My parents, who pray for me when I’m struggling with a flare. My sister, who continually calls and emails me to see how I am doing, and who patiently listens on the other side of the phone thousands of miles away while I cry out in pain. My friend, who for the first time this past weekend saw me at rock bottom (and in tears) and who consoled me, without skipping a beat. My department head, who accommodated all of my requests and missed classes over the past month, and who wished me improved health in the coming year. My rheumatologist, who cracked a joke, as usual, when we crossed paths this morning. My psychologist, who I know I can always turn to in a time of need.

And last but not least, all of my online friends, who know first-hand about the ups and downs that I write about here on my blog. Sometimes it’s just one email sent back and forth. (There are still some messages in my inbox that I received this week, and haven’t responded to yet…please know that your messages provided me a great amount of support just when I needed it the most.) Other times, it’s a friendship that has blossomed over the past couple of years. All of these friendships have one thing in common: they let me know that I am not alone, and that together we can continue to overcome the challenges of living with chronic illnesses.

So yes, this year I opened my presents a few days early…but can you blame me?

Best wishes for a happy and healthy holiday season!

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

Stepping On Your Toes

“Even under the best of circumstances, life is challenging, and much of the time it is difficult. It is always uncertain, constantly changing, and mostly out of your control. Whether it is taking you on a wonderful ride or stepping on your toes, life will move you with the rhythm and in the direction of its own unfolding, irregardless of your best intentions. Life dances and you must dance with it. This is the necessary price and mysterious gift of being incarnate–alive in a body.”

Dancing With Life: Buddhist Insights for Finding Meaning and Joy in the Face of Suffering

Today, instead of completing the first downward taper of my Prednisone push, I actually (under my rheumatologist’s orders) increased the dosage.

It was a rough weekend, and today things got even rougher.

The inflammation is so constant and severe, that the first thing my physical therapist told me this morning was that I needed to not move any more than was absolutely necessary. I am having frequent episodes where both of my hands are being stretched and pulled like they were silly putty. Extended moments of loss of use usually follow. My left leg, from the hip down through the knee and ankle all the way to my toes, is inflamed like never before. Each muscle and tendon in between is being stretched out to its max…it feels like I’ve had a charley horse along the entire length of my leg for the past 24 hours straight.

So while I was still in physical therapy, I started texting and canceled both of my afternoon classes. In the big scheme of things it wasn’t a big loss, as it was the last class before the final exam tomorrow. Instead of reviewing together in the classroom, I asked each student to review individually (i.e. study).

It’s a good thing I changed my plans, because an hour later I was barely moving. My attempt to listen to one of my regular guided meditations (Break Through Pain: Free-Floating Within The Discomfort) actually pushed my anxiety levels over the edge. Even though I’ve listened to this track probably hundreds of times, the instructions at the beginning had a completely opposite effect of what I was hoping for. You see, I was being asked something along the lines of “make sure you get in a comfortable position”. Comfort? Are you kidding me? I could barely even move. It was too much for me to handle. (By the way, I would still highly recommend this book and its accompanying audio cd.)

I had lunch, sitting at the dining room table. (I just had to get out of my bedroom.) I sipped Sprite through a straw, and had my food cut up and served to me, forkful by forkful. I didn’t feel sad. I didn’t feel angry. I was just happy that I was eating. I had planned to keep myself busy during the rest of the afternoon with stationary activities such as watching a movie or looking at some art books, but my energy levels were so low and the pain was so high that I spent the next few hours, asleep (passed out is more like it…hehe) on my bed.

It’s late in the evening and I’m almost finished writing the two exams for my classes tomorrow. I hope to be able to go administer them in person and say goodbye to my students, but if I am unable to do so I will not hesitate to ask my department head to have someone else stand in as a proctor.

So yes, the dance at the moment is harder than usual, and RA and I continue to step on each others toes…but I’ll keep on trying to figure out what I need to do. The pain and disability might be out of control, but my reaction to it remains within my control.

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