And then I was extremely taken aback by all of this. Am I marginalizing this whole experience? Never- it’s had an impact on me so tremendous that I have yet to grasp it. But I found myself thinking lots of things I hadn’t ever thought about before. So this RA thing that has invaded my joints and my life….it isn’t all that bad? This thing that has the ability to make my joints feel like they’re in a vise grip…is barely noticeable at times? This disease that has in a lot of ways completely changed certain aspects of my life….I’m starting to feel a certain condescension or scoffing towards?
Sometimes, Rheumatoid Arthritis Guy would swear that a little troll lives under his bed. This troll, having nothing better to do, jumps out a couple of hours before I wake up and whacks me with a sledgehammer. This morning, he decided to get my feet.
There have been many times when rheumatoid arthritis has greatly affecting my hands, to the point where things that would otherwise be simple – such a lifting a pen or a glass of water – become difficult. It is during these moments when I begin to realize how much I actually use my hands to do things throughout a typical day.
During some of these episodes, I have sometimes told myself that if I had a choice between having RA attack my hands or my feet, that I would choose my feet. My line of reasoning goes like this: even if I have difficulty moving my body around, at least when I am in a stationary position I will still have full use of my hands and upper body.
Mornings like today remind me about the inherent silliness that is present in my above answer. Of course RA affects each joint differently, and the mobility loss in different joints presents different challenges to my life. I can still walk around at the moment, but only with extreme pain. It feels like the bones in my feet, from the ankle down, are broken.
As I was falling asleep last night, I started having flashbacks from around eight years ago. I was still in my twenties and just a couple of years out of graduate school when I started having pain in my feet. The pain got so bad some days that I could not even walk around. These episodes were taking place during the evenings, which lead me to believe that the pain was a result of having walked too much during the day, or that I needed a pair of more comfortable shoes. I even went to my general doctor because of this pain. X-rays were inconclusive and I was told to take aspirin.
Soon after, the pain in my feet begin to go away – but my knees started to hurt. Still in my twenties, I thought this was just part of the normal aging process. On some days me knees hurt more than others. The pain was not as pronounced as it had been on my feet, but it was still definitely noticeable. A little more than a year later, I went to my general doctor to complain about pain in my knees. This was the first time that I used the word “arthritis”, as in “Could I have arthritis?”
I was told (I kid you not): “If you have arthritis, there is nothing we can do for you.” Take some aspirin or ibuprofen for the pain.
(It’s a good thing that Rheumatoid Arthritis Guy was not around at that point in time…he would have probably unleashed a serious can of whoopass.)
In a way I digress, the foot pain that I am experiencing at the moment is much worse than what I experienced many years ago…but still, it is pretty profound to realize that I have been experiencing symptoms in my feet for almost a decade. Having received my official diagnosis three years ago, I normally consider my superhero experience to be around five years – this was the time when I first lost the use of my knees for a few months. If I look at things a little more closely, I have been living with rheumatoid arthritis for almost ten years…wow.
This past Friday evening I was walking to class in extreme pain. In the past I would not have even considered leaving the house, much less go to a class where I had to pay attention and take notes. I would have instead wrapped myself in blankets and stay in bed. But still, I went to class. When I decided to take this class earlier this month, I told myself that I would do everything within my control to try to not miss class – even if I was in pain. I sat on a bench outside the classroom a few minutes before the hour, and secretly cried inside. I was kicking myself for having dragged myself outside of the house. Shouldn’t I be in bed right now? It was too late for that. Off to class I went…and just ten minutes later my mind was elsewhere and I had (almost) forgotten about all of the pain.
On Saturday evening I was in the kitchen preparing dinner. (This is something I normally used to do every Friday, but since starting my M/W/F evening class I have since switched it to Saturday.) I feel proud of the fact that I am in the kitchen cooking and washing dishes – but I am in just so much pain! No, it is not a pain that is being made worse by what I am doing at the moment…it’s just the oh-so-pervasive pain of rheumatoid arthritis that seems to drill into every joint. Shouldn’t I be in bed right now? No, I tell myself – I am just fine with what I am doing at the moment. At a certain point, it becomes to much to hold in, and my emotions come spilling out in the form of tears.
I’ve recently begun to have feelings of being in a freefall. Where this ride stops I do not know. I can’t say that I enjoy these feeling. I can say that I am just a tad bit more used to them, then I used to be. I do know that wherever this ride lets me off, I will pick up the pieces and continue to move forward once again.
In the meantime, I’ll continue to enjoy life as much as I can. Instead of a freefall, I will imagine that I have a big blue cape (with the letters “RA” on it) that is spread open and allowing me to soar across the sky. So many things are out of my control at the moment. What I can do is look out across the horizon and see the beauty that exists. I think I will continue to do this, as scary as it can be at times.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy
Because there is no such thing as taking too many breaks!
Meet Alva, the second of our three dogs. Alva is a chihuahua/terrier mix that we rescued from Hopalong Animal Rescue in Northern California – she was one of a litter of five tiny puppies who had arrived at their shelter. The most nervous of the three dogs (must be the chihuahua genes), Alva is very affectionate and loves to come give you kisses after she has eaten her meal. She is currently six years old, so she has taken on a lot of the responsibilities of playing with Oliver the Pug, who you all met let week.
The home office has been repainted, the windows are open and the room is airing out. Once all of the books are back on the shelves, things should be done. I hope to have photos to share sometime in the future!
It’s been a really bad RA morning – lots of pain and stiffness in my extremities, especially in my feet. (In fact, my feet have not hurt this much in a long time…maybe I will do some warm foot baths throughout the day, as I think they are too swollen for a paraffin bath.) So I think today will be spent watching football from bed. Can’t complain about that!
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Rheumatoid Arthritis Guy has recently started having doubts about the change of medication (from Arava to Plaquenil) that his rheumatologist recommended last week. On one hand, this has nothing to do with anything that is going on in the present, but is instead related to a really bad period I had in the past while I was on Methotrexate. (My rheumatologist at that time refused to take me off MTX, even though I begged to be taken off this medicine…ultimately I took myself off MTX.)
So, the thought of taking any medication that I have not taken before scares me to some extent. I was scared when I started taking Arava almost half a year ago – but with the support of others, I reminded myself that I had created a rheumatoid arthritis support team that would be responsive to me needs and to my feedback. (I also reminded myself that taking a medicine which I was mentally/emotionally struggling against did not seem to make much sense.)
Other than my hair loss, I have not experienced any other side-effect (that I know of) with Arava. Compared to the side effects that I experienced while on Methotrexate (nausea, dizziness, heat-sensitivity, diarrhea, headaches, etc.), I would hoose my current hair loss over the previous list, any day.
But as with any medicine, there is a cost and a benefit that differs with each individual…so maybe it is indeed time for me to try another medicine, to see if it provides me improved benefits compared to the one that I am currently on. As with any other aspect of living with rheumatoid arthritis, my thoughts continue to go up and down.
On days when I am feeling relatively well, I ask myself why change and risk the unknown? Is it not better to stay on my current medicine?
On days when I am not feeling well, I tell myself start the change immediately! What harm can come from trying a new medicine?
Since last week, I have continued to jump back and forth between the above two responses. Luckily, I have a session with my psychologist this coming week, so I plan on addressing this issue more in order to come up with a firm answer.
Is it just me, or do others face similar issues when it comes to deciding which drugs to take and not to take?
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
Our Annual Appeal starts at the end of September and we need your help!
This year’s Annual Appeal will focus on the difficulties that many people with arthritis are faced with every day. To show some of the struggles they encounter, Arthritis New Zealand is launching a new television campaign that will include celebrities wearing orange gloves to replicate the challenge of arthritic fingers, with the catchphrase ‘Could you handle it?’ This will help to illustrate just how difficult it can be to use everyday objects when you have arthritis in your hands.Geraldine Brophy, who was recently on Dancing with the Stars, will continue her support of Arthritis New Zealand by acting as the face of the Annual Appeal, which starts with the National Street Day on Friday 25th September.Brophy was diagnosed with Osteoarthritis (OA) a few years ago and is still coming to terms with managing the pain in her feet, knees and hands. OA is the most common form of arthritis, and can be very debilitating to many.The annual appeal is hoping to top $550,000 this year. “We were just under half a million last year and I know collectors and volunteers will be going all out to top that,” says Sandra Kirby, Chief Executive of Arthritis New Zealand.
“You can be sure Arthritis New Zealand collectors will be very visible, in many areas dressing in our bright orange colour for the occasion.”
There’s an element of competitiveness between the divisions, seeing who can come up with the most eye catching displays – people dressing up as pumpkins and selling pumpkin soup, setting up displays of balloons, flags, posters and banners.
100% of funds raised will go directly to the work of Arthritis New Zealand.
How you can help?
Arthritis New Zealand relies heavily on gifts and donations to continue our work in the community. To donate, phone 0900 333 20, or donate now.
For details about volunteering, call your local Arthritis New Zealand Service Centre on 0800 663 463.
Our volunteers are so important to us and we really do appreciate the time they give up to help us enable a better quality of life for those with arthritis.
Arthritis New Zealand is the national voluntary organisation, which represents the interests of those with arthritis.We are an incorporated society with charitable status. Yet we are run by people like you, and many know just what it is like to have arthritis.
Apart from some modest government funding, we rely on your support with our fundraising initiatives to maintain and develop a wide range of support services.
More Information: www.arthritis.org.nz.
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- Health.com: 11 Famous People With RAOctober 1, 2014 - 9:50 am
- Arthritis Broadcast Network: Spotlight On Arthritis SuperheroesSeptember 10, 2014 - 7:34 pm
- The New York Times: Actress, Artist, Sometimes Both At OnceMay 20, 2014 - 10:29 am