Merry Christmas!

Merry Christmas!

Superhero Christmas

Rheumatoid Arthritis Guy would like to with you and your loved ones a very Merry Christmas!

Where I live the big festivities are on Christmas Eve. The big meal is right around midnight, and gifts are opened afterwards. It’s going to be a great day and a late night!

If you haven’t already, be sure to check out the “12 Days of RA Christmas” in the preceding post, that was created here out of a group effort. (Credit for the idea goes to Vicki Corson.) Thanks to everyone who contributed!

Can Living With Rheumatoid Arthritis Lead To Gains?

AymaraRheumatoid Arthritis Guy and his family returned home late yesterday afternoon, after a three day visit to the Island of the Sun and Island of the Moon in Lake Titicaca. The trip was strenuous – it’s an almost 9 hour trip from end to end – but it was fun…and in the end, I was able to pull off both the trip and the final hike with no problems. (My ankles guards and crutches helped quite a bit.)

During the trip, my rheumatoid arthritis continued to present itself. It is not as chronic as it has been in the past, but it does continue to come in pretty regular waves every few hours. I was surprised at how well I was able to integrate these ups and downs into a daily routine that was totally out of the normal for me.

When I got home yesterday, I had only about an hour before I had to be at my Aymara language class – the final one of the semester. While everyone else was preparing to rest, I was swapping out the clothes in my backpack for my notebooks and dictionary. Even though I had been able to practice this language during this trip, I had not really “studied” for the final exam. (In the end, things turned out better than expected with the final exam!)

As the professor wrapped up the class, he started to offer some suggestions as to why those of us who took the class decided to take the class – after all, the Aymara language is a language in decline with almost no written tradition. As he was sharing his perceptions, I couldn’t help but experience a major flashback to just a few months ago, when I started taking this class.

Although I have been interested in studying the Aymara language for years, the main reason I ultimately ended up taking this class this semester was to serve as a distraction from the constant pain that I had been experiencing for months. I was very weary of my ability to actually attend a class three times a week – especially on a campus that is not friendly to disabled individuals. And then there was the larger question: would I even be able to concentrate and focus on the intrinsic details of a completely foreign language while dealing with a severe case of rheumatoid arthritis?

While I was walking home after class last night, I had a smile from one ear to the other. Not only was I able to achieve everything that I thought might not be possible, but in a way I was able to turn my chronic pain and illness into something productive. I used it to motivate me to learn a new language that I have wanted to study for years. It wasn’t always easy – just a couple of weeks ago I reached a point in class where my hands could not even take notes – but it was definitely possible.

I felt like I could take on the world, and immediately started to think about how I could replace some of the other losses that I thought were inevitable with a life with rheumatoid arthritis. I now know otherwise. And more importantly, I know that in time things will continue to fall back into place…I need not push too hard.

I’m looking forward to discovering where my rheumatoid arthritis will take me next!

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

Going Off The Grid!

Yesterday Rheumatoid Arthritis Guy and his family took a day trip to visit some pre-Inca ruins. The sunny afternoon eventually faded away as the clouds began to build up, which was somewhat of a good thing because standing under the strong summer sun while at this altitude can be quite overwhelming. (SPF 50 is my normal sunblock, and even with that I can still get a sunburn.)

Eventually the clouds turned to sprinkles, the sprinkles turned to rain, and then the rain turned to hail. The umbrellas that we had taken to protect us from the sun ended up protecting us from a completely different element. My wrists started flaring with the cold humid air, but the worst passed within an hour or two.

Early Saturday morning we are traveling to Lake Titicaca, where we will spend the next few days. We will be spending a couple of nights on a slightly remote island that still houses Inca temples. The nighttime sky is amazing, especially when it fills with more stars than you have ever seen in your life, and the sounds of donkeys and llamas float through the air. During the day, the horizon is filled from one end to the other with snow-capped Andes mountains. All in all, it’s a pretty remarkable place.

I used to make this trip frequently, sometimes even once a week. I haven’t made this trip in the last year, as it’s pretty strenuous at times and culminates in an intense 45 minute uphill walk/hike…but I’m ready to go tomorrow. Next to my backpack are my crutches, ankle supports, and tube of Voltaren Gel.

RA or not, I know it’s going to be a great trip!

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

What Makes A Day Great?

hot-chocolateYesterday was a great day, as Rheumatoid Arthritis Guy’s family got to meet two important individuals of his support team. In the morning, as I stayed home to tutor a new student, my family spent some time visiting with my psychologist. In the afternoon, they joined me for my monthly visit to my rheumatologist. It was nice having these different people in my life – who in their own way continue to provide me with so much support – get to know each other.

It has been a long uphill walk this past year. I worked to establish my professional support team with really strong individuals – people who excel in their fields. I worked to truly share with my family members the ups and downs of life with rheumatoid arthritis. And most importantly, I worked to accept the presence of rheumatoid arthritis in my body and in my life. Yesterday was one of those days when it felt like everything was coming together, full circle.

Just the fact that I can label yesterday as a great day in and of itself is a big step forward, as my rheumatoid arthritis continues to flare. In the morning, I stayed in bed for a couple of hours as I struggled to move my ankles and wrists. I surprise myself sometimes, as I awake to find myself performing soft rotations of my hands and feet. The pain in my wrists once again reached new highs, but it didn’t seem so bad. I don’t want to say that I am getting used to this, because I don’t know if one can every really get used to this amount of pain…but maybe I am getting used to it, in a way.

In the afternoon, right as I was walking into my rheumatologist’s office, my left hand started curling up from the inflammation. I’m all too used to this happening, but up until now it’s only happened in the morning or when I am napping. Now, it comes out of nowhere, anytime during the day. A few minutes later, as I responded in the affirmative to all of the questions that my doctor was asking me, I had to lower my head in embarrassment when asked if I have been doing my daily hand exercises. I haven’t. I need to. I will.

Arava, which we stopped a couple of months ago, is going back in. I had forgotten that this suspension was going to be temporary – the idea was to give my body a break from this medicine, and to try to give me a timeout from the hair loss. But it’s reintroduction is not permanent either…we’re going to introduce 20mg for one month, then 10mg the next month, and see how it works in combination with the Plaquenil.

In the evening, we made peppermint hot chocolate and put up all of the ornaments on the Christmas tree – it looks lovely. My sister gave each of us a new pair of pajamas, a tradition that she was introduced in her husband’s family. We listened to Christmas music as we hung the ornaments, and my mother shared the history of all of my childhood ornaments as we pulled them out of the box.

RA flare. Hot chocolate. More meds. New pajamas. Happy memories. It definitely was a great day.

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