The New Normal

RA Guy Adventures of RA Guy 7 Comments

Thinking SupermanHave you ever woken up one day with the feeling that you seem to have changed almost overnight, while the world around you continued to remain exactly the same?

Rheumatoid Arthritis Guy has been feeling this way recently. It’s a weird sensation, definitely – but it need not necessarily be a scary one. The idea of re-establishing my connections with the environment around me, with my body, and with my rheumatoid arthritis might be quite unsettling were it not for the knowledge that in the process, I have been breaking bad models and replacing them with good models.

But any change, whether for better or for worse, does take time to get used to. And to be brutally honest, my heart is still catching up to my head.

You see, just six weeks ago I was still in major denial about the effect that rheumatoid arthritis was having on my person and on my body (and, my mind). Sure, I could see it and feel it, but this did not always translate to clear thoughts of understanding. I did not take the time to stop and evaluate what was going on. Once again (I have been through this cycle multiple times), the thought of acceptance seemed to be the equivalent of throwing in the towel.

Instead, I continued to tell myself that if I stayed strong I could work through it. By default, this meant that I was telling myself that any worsening of my rheumatoid arthritis was a sign of weakness on my behalf. Looking back, these were not very healthy thoughts to be having while dealing with a progressive and chronic illness, but that is where I was.

I continued to go to power yoga five mornings a week, all the time ignoring that my joints seemed more inflamed after each session. I thought that if I “gave in” to my rheumatoid arthritis and took a few days off, that my illness would get worse. As long as I continued to do the routine exactly as I’ve always done it, then everything was okay.

Little did I know that I was going the exact opposite of what I thought – by pushing my body too far, I was actually causing harm. And by not allowing myself to take the break that I needed to heal, I was denying my reality and the presence of rheumatoid arthritis in my body.

But all of that has changed in the past month.

During the past four weeks, I have prioritized taking care of my mind and body – above everything else. Each day is filled with appointments. One day I am going to physical therapy. The next day I am going to my psychologist. The day after that I am back at physical therapy. During the day I am putting on my ulnar-deviation gloves. (I am eventually supposed to get to the point where I can wear them overnight, but I haven’t been able to wear them for more than an hour yet!)

When I am not doing something physical, I am trying to find activities to help heal my mind and spirit. I blog. (This started as and continues to be, one of my best coping mechanisms. For me, it’s like putting my personal thoughts down in a private diary – with the exception, of course, that I am making it public for all of you to read.) I practice mindfulness. I listen to meditation tapes. I read. I relax.

Through this process, I have begun to lead a life that is a much more day-to-day.  I have not been spending a lot of  time dwelling on the past, nor have I been peeking much into the future. There always seems to be something in the present that I needs to focus on. With this, I have been content.

However, a couple of days ago I looked back at my past month, and felt a little overwhelmed when I realized how much things have changed. I then projected this past month onto my future, and felt slightly depressed as I asked myself: “Is this my new normal? Days full of medical care, exercise both physical and mental, and never knowing what my ‘point of recovery’ might be?”

I bought myself back to the present, and in doing so, I was able to affirm to myself: My “new life” is working for me. And in the end, isn’t this all that counts, no matter how long it lasts?

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

60-Second Guide To Rheumatoid Arthritis

RA Guy Adventures of RA Guy 5 Comments

60 Second Guide to RA

During the past few years, Rheumatoid Arthritis Guy has read page after page (after page) of information about rheumatoid arthritis. I have often found many of the explanations to be somewhat dry and scientific, somewhat devoid of a real human voice of what it’s like to live with rheumatoid arthritis. Sometimes I  have difficulty getting through a multiple page article with all of the medical jargon and explanations – and I live with this illness!

I have also hoped for a short (yet comprehensive) non-technical explanation of rheumatoid arthritis that I can use to share with friends and family. On many occasions, I have struggled while trying to describe what rheumatoid arthritis is, exactly what an autoimmune illness is,  and how rheumatoid arthritis differs from osteoarthritis.

During the past few days, I decided to put together my own guide. (Yes, I was just looking for an excuse to make some more little cartoon graphics!) No medical dictionary is required to read this guide, it has lots of colorful graphics, just a dash of humor, and the best part – it only takes a minute to read. (A countdown timer is included – really!)

Please read my 60-Second Guide To RA, and let me know what you think. (I have also added a permanent link on the top navigation bar.) You can also download a pdf version of this guide.

Please don’t forget to share with friends and family! Together we can increase awareness of rheumatoid arthritis – it only takes a minute!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy

Sunday Break

RA Guy Adventures of RA Guy 3 Comments

Because there is no such thing as taking too many breaks!

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Rheumatoid Arthritis Guy turns 1 month old today. Thank you readers, it’s been a blast! My first post: Rheumatoid Arthritis Guy Saves The World!

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Lake Titicaca, located at the top of the world – literally. (12,600 feet above sea level, to be exact.) Double rainbows. Reed boats. Inca ruins. Andes Mountains. Islands. Winter solstice moon. Fisherman’s boat.

lake titicaca

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I’m a few chapters into The Brief Wonderous Life of Oscar Wao, by Junot Diaz. Fukú: a curse or doom of some kind; specifically the Curse and Doom of the New World.

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

A Love Supreme

RA Guy Adventures of RA Guy 2 Comments

lovesupreme

A Love Supreme is a ten minute black and white documentary film produced by Nilesh Patel in 2001. This film was a tribute to Patel’s mother, who lives with rheumatoid arthritis. The goal was to create a record of her skilled hands preparing samosas, in case they became affected by RA in the future.

“Seen on a big screen, the results are astonishing. The peas are the size of mountain boulders. Each slice of potato peel is like a ski slope. Corn juice dripping from a cob has the Adamic beauty of a fresh spring. Spices lie like desert sands. The pastry is kneaded and rolled and peeled by Indumati, whose fingers now appear huge. Her hands become historical texts that tell hard, complicated stories about female labor, migration, domestic economy. We peer at the thick veins and coarse skin, but also at signs of personality and prettiness – bangled wrists, hennaed curlicues. Samosa-making has been transformed into an epic activity.” –Gastronomica Winter 2004

This film is available for viewing at the BBC Film Network. (Real Player or Windows Media Player required.)

I have added a calendar on the sidebar to keep track of events related to disability and the arts. There are quite a few disability film festivals around the world throughout the year, so you might want to check to see if any of them are going to be playing in your area.

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