That took only about 36 hours. A day and a half without internet access seems like an eternity…I don’t know if this is a good thing or a bad thing!
My home Internet service went down earlier today. A technician came out in the afternoon and was unable to fix the problem; hopefully it will be fixed sometime tomorrow. I´m keeping my arthritic fingers crossed! I hope to be back online soon. (In case you are wondering, I am typing this from an Internet Cafe, right before I head over to my evening class.)
Last night Rheumatoid Arthritis Guy saw the comedy-drama movie Julie & Julia. This film is based on the writings of Julia Powell, an office worker in downtown Manhattan who decided to cook all 524 recipes from Julia Childs’ cookbook in one year – and blog about it.
(Interesting fact: the only “celebrity” death that has ever caused me to shed a tear was that of Julia Childs. I absolutely love the cooking show that she did with Jacques Pepin, and she is the one person who taught me to love butter and hate margarine.)
It got me wondering…if I decided to write a blog for an entire year, what would I write about?
I could try all of the rheumatoid arthritis medications that are currently on the market, and write about if they help me or not. I had to cross off that idea, though, when I realized that it generally takes at least 1/3 of a year to find out if a particular medication is working or not. Without even considering any combination treatments, that means that I would only be able to get through two or three medicines, max.
I could share all of the details about my regular physical therapy sessions…but that would probably put everyone to sleep. Speaking of sleep and physical therapy, I’ve recently become amazed at the deep sleep that I have started entering into during my recent sessions, even as I have different electrical currents passing through my body at any given time.
Yesterday I even got a session of “scanning” (I don’t know the actual medical term), but it’s combination electrotherapy and ultrasound therapy. It’s hard to describe the sensation, but if feels both good and bad at the same time. Even through this, I started to fall asleep.
I could write about the number of times I glance at my write wrist during the day, amazed that such a seemingly small joint can cause so much pain. It’s the one joint in my body that never seems to escape pain, no matter what.
But I’ve decided to keep things just they way they are. I will continue writing about my daily life with rheumatoid arthritis, both the ups and the downs. It’s worked for me so far, as I am coping much better with my RA now than I was a few months ago – before I started blogging.
Here’s hoping that the ups continue to outnumber the downs!
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy
The Jeffrey Gottfurcht Children’s Arthritis Foundation (the “Foundation”) was founded in September 2009 by Jeffrey Gottfurcht. Eight years ago at the age of 27, Jeffrey was diagnosed with Rheumatoid Arthritis. He had periodically experienced swollen fingers and wrists and had stiff joints throughout his late teens and early 20’s but thought these were merely an allergic reactions. Finally, a Rheumatoid Arthritis specialist at Stanford confirmed the diagnosis. In 2009, Jeffrey’s symptoms significantly advanced and he learned that he would be functionally immobile within a few years. An avid mountain climber, Jeffrey decided he could not just give in and with a can-do attitude committed to training for and climbing Mount Everest in 2010, thereby fulfilling his number 1 dream. Jeffrey wanted to share his determination to fight Rheumatoid Arthritis and bring joy, strength and support to others afflicted with this lifelong disease. Jeffrey chose to focus on fulfilling the dreams of children suffering from Juvenile Rheumatoid Arthritis because as a father of 3, he understands the importance of creating positive memories in a child’s life. The Foundation hopes to inspire, educate and generate awareness while those suffering with this lifelong disease optimistically await a cure.
The Foundation’s mandate is to fulfill the dreams of children afflicted with Juvenile Rheumatoid Arthritis. Referrals for dreams will come from parents, guardians, members of the medical community, support-related websites and children suffering from Juvenile Rheumatoid Arthritis. The Foundation’s Dream Team will select the dreams that are prudent and possible to make a reality. The Foundation’s president will visit the child and present the dream come true. Wishes should fall under the following categories: 1) “I wish I could go…”, 2) “I wish I could meet…”, 3) “I wish to be…”, and 4) “I wish to have…”.
More Info: http://jgcaf.org/
The rules of the game are not necessarily how I would have written them, but each and every day I begin to understand them a little better. I continue to learn that within what appears to be strict constraint, there is actually quite a lot of freedom to be found.
Sure, the nature of my rheumatoid arthritis continues to be quite unpredictable – no big surprise there. One trick that I am currently learning, however, is that the more I am there for my body, the more it is there for me in return.
If I give it plenty of downtime and recuperative rest, than I can count on it just a little more to work with me when I really need it to. I can’t control the unpredictability, but maybe I can make it just a tad bit less predictable. This counts for a lot…and it really helps me prioritize my activities throughout the day.
I continue to become more aware of the kind words and actions of support that I receive on an almost daily basis. These acts of kindness come not only from people who are close to me (and who live with my rheumatoid arthritis in their own way, as well), but they also come from casual acquaintances – and at times, even almost complete strangers.
Some people understand my situation more and some people understand my situation less, but they all have one thing in common: each and every one of them is trying to help. I will do my best to help them become more aware of what it means to live with rheumatoid arthritis, but I am not going to criticize them for not fully understanding the ins and outs of RA.
Instead, I am going to be grateful for all of these kind gestures of support, whether they hit the mark or not. In the process, I will remind myself that before I was diagnosed with RA – even though I had been living with it for years – I myself had no clue what rheumatoid arthritis was. (Many years after my diagnosis, I still struggled to understand what it meant to live with rheumatoid arthritis.)
Quite often, the rules of the game are nothing more than those of a tightrope walker: don’t fall over. I continue to figure out how to balance doing enough physical activity to stay in shape and maximize the flexibility in my joints, with not pushing my body too far. This is not an easy feat to accomplish, especially since this point of balance changes day by day – and sometimes even hour by hour. If I accept this challenge as part of my daily life. It is now something that I expect, which means that it is something – good or bad – that I look forward to with each new day.
In the past, my goal quite often was to squeeze multiple activities into one day. My new goal is to spread one activity out into multiple days. I like this new way better. Sure, I am still going to do a handful of things on most days, but I will at least prevent myself from trying to complete a large task all in one sitting.
My number one rule remains unchanged, though. For every one thing I cannot do, there are two things that I can do. This rule continues to carry me farther than I could have ever imagined.
The rules of the game aren’t always easy to figure out…if only rheumatoid arthritis came with an instruction booklet! As I continue to familiarize myself with the rules, playing the game is becoming a whole lot easier. In a funny sort of way, I’m actually having some fun. And after all, isn’t this the whole point of playing a game – to have fun?
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
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- The New York Times: Actress, Artist, Sometimes Both At OnceMay 20, 2014 - 10:29 am