Many people haven't heard about the Spoon Theory, but it's a wonderful analogy of how people with chronic illnesses deal with day-to-day activities. We're called 'spoonies', ones who are painfully aware of our 'spoon supply'.
Think of it like the life bar in a computer/Wii/Facebook game. You use a certain amount of energy to achieve tasks, like fighting an enemy, exploring new territory, or building new buildings on your ranch. That energy bar is set at a certain level. You can gain more points by advancing to higher stages in the game, finding objects or 'eating' virtual food and drink.
Now, we all have an 'energy bar' and for the most part, it's set. The amount depends on the individual; some people have more than others and it can vary day by day. Sometimes you find you can do all these tasks without a problem. Other days, you can't, but it's not a permanent state. We spoonies start out with a certain amount of energy like anyone else, but ours is permanently FIXED. We have to plan out ahead of time HOW we use our energy. Unlike the other players in the game, we can't gain more points. Once that supply is gone, it's gone. If you have one or two points at the end of the day, do you cook dinner or take a shower?
Decisions, decisions.
And some days, there's only one spoon left, and it's bent and tarnished.
But you still have to go on. Somehow.
All original writing and art copyright A. Dameron 2000-2011
Showing posts with label rheumatoid arthritis. Show all posts
Showing posts with label rheumatoid arthritis. Show all posts
Friday, April 15, 2011
Saturday, April 2, 2011
Swollen Hands a Difficult Post Dost Write...
...and very little art doth make. :-(
Having rheumatoid arthritis can be more than an inconvenience. It can be downright crippling, especially when you depend on your hands to write and paint. Although I do take medicine for it (methatrexate and prednisone), some days are worse than others. Unfortunately, it seems like this is one of those times. The side-effects from the meds can often be worse than the actual pain itself. Saturday afternoons are my "methatrexate coma days". I'm usually out for the count for several hours after I take it. It puts a dent in my weekends, but it's the only time I can take it. I need to be fully cognizant during the week, with three kids.
This past month marks 5 years that I've been living with RA. I was diagnosed not long after my older daughter Christina was born in 2005. My elbow froze up on me while I was driving my son to school. At first, the doctors thought it was tennis elbow. Then it was 'De Quervin's Syndrome', a nerve thing that affects people who use their hands, like typists and mothers. The treatments weren't effective, so the osteoarthritis people sent me to the rheumatologist.
And that was when they finally gave me the correct diagnosis: rheumatoid arthritis, with secondary fibromyalgia. And medicines. A lot of medicines that made me sick to my stomach.
A couple of years ago, I visited the rheumatologist's officer every 6-8 weeks for an infusion session. Their infusion room was actually comfortable, with leather recliners, pillows and blankets. My sessions lasted 2 hours and I was one of the last patients to leave. Honestly, it was a break in my hectic routine. Nine times out of ten, it was naptime. The nurses were awesome and helped me not be so nervous about needles.
Upside: my RA improved while I was having the treatments. Downsides: they weren't cheap, and insurance put it in the 'experimental medical treatment' class and therefore (according to them), they weren't required to pick up any of the cost. The Remicade suppressed my immune system to a point where it wasn't attacking my own joints. But it also meant my resistance to other infections was almost nonexistent.
In May 2008, I was hospitalized for bronchitis that had progressed to pneumonia. I don't remember most of that ordeal, but it was really bad. I ended up in the ICU (with a blood pressure that had crashed...all the way down to 80/60, I was told). Complicating things was the fact I found out I was pregnant with my third child...despite the fact the doctors told me that wasn't possible being on methatrexate at the time.
Um...yeah. Oops. But I had Sarah, and she's a joy, so at least some good came out of the bad.
I still struggle with it, especially when the weather's loopy like this. It affects everything from my energy level to my ability to type and paint, and my general emotional mood. I do get "it's only arthritis" from people...like it's 'only a minor condition'. I've also heard, "Are you sure it's only in your head?" See my lab tests and tell me THAT again.
One more time: it's a CHRONIC and PAINFUL condition. It's a part of my life that I have to manage in order to function day to day. And there are times when I feel like I can't do that, but three children force you to do as best as you can. You don't have the option of wallowing in self-pity. You can't just curl up in bed and cry, though you want to. You have to live.
I have to write. I have to paint. It's just me. And RA can try to destroy that, but I won't let it.
All original writing and art copyright A. Dameron 2000-2011
Having rheumatoid arthritis can be more than an inconvenience. It can be downright crippling, especially when you depend on your hands to write and paint. Although I do take medicine for it (methatrexate and prednisone), some days are worse than others. Unfortunately, it seems like this is one of those times. The side-effects from the meds can often be worse than the actual pain itself. Saturday afternoons are my "methatrexate coma days". I'm usually out for the count for several hours after I take it. It puts a dent in my weekends, but it's the only time I can take it. I need to be fully cognizant during the week, with three kids.
This past month marks 5 years that I've been living with RA. I was diagnosed not long after my older daughter Christina was born in 2005. My elbow froze up on me while I was driving my son to school. At first, the doctors thought it was tennis elbow. Then it was 'De Quervin's Syndrome', a nerve thing that affects people who use their hands, like typists and mothers. The treatments weren't effective, so the osteoarthritis people sent me to the rheumatologist.
And that was when they finally gave me the correct diagnosis: rheumatoid arthritis, with secondary fibromyalgia. And medicines. A lot of medicines that made me sick to my stomach.
A couple of years ago, I visited the rheumatologist's officer every 6-8 weeks for an infusion session. Their infusion room was actually comfortable, with leather recliners, pillows and blankets. My sessions lasted 2 hours and I was one of the last patients to leave. Honestly, it was a break in my hectic routine. Nine times out of ten, it was naptime. The nurses were awesome and helped me not be so nervous about needles.
Upside: my RA improved while I was having the treatments. Downsides: they weren't cheap, and insurance put it in the 'experimental medical treatment' class and therefore (according to them), they weren't required to pick up any of the cost. The Remicade suppressed my immune system to a point where it wasn't attacking my own joints. But it also meant my resistance to other infections was almost nonexistent.
In May 2008, I was hospitalized for bronchitis that had progressed to pneumonia. I don't remember most of that ordeal, but it was really bad. I ended up in the ICU (with a blood pressure that had crashed...all the way down to 80/60, I was told). Complicating things was the fact I found out I was pregnant with my third child...despite the fact the doctors told me that wasn't possible being on methatrexate at the time.
Um...yeah. Oops. But I had Sarah, and she's a joy, so at least some good came out of the bad.
I still struggle with it, especially when the weather's loopy like this. It affects everything from my energy level to my ability to type and paint, and my general emotional mood. I do get "it's only arthritis" from people...like it's 'only a minor condition'. I've also heard, "Are you sure it's only in your head?" See my lab tests and tell me THAT again.
One more time: it's a CHRONIC and PAINFUL condition. It's a part of my life that I have to manage in order to function day to day. And there are times when I feel like I can't do that, but three children force you to do as best as you can. You don't have the option of wallowing in self-pity. You can't just curl up in bed and cry, though you want to. You have to live.
I have to write. I have to paint. It's just me. And RA can try to destroy that, but I won't let it.
All original writing and art copyright A. Dameron 2000-2011
Thursday, March 31, 2011
I should have been a meteorologist...
...because my body's a veritable weather detector. Unfortunately, it doesn't go 'ding' when it detects stuff, timey-whimey or otherwise. It goes "OUCH!" Joints and muscles, thank you for the not-so-subtle warnings.
The past few days have been cold, gray and rainy. In other words, typical "April showers bring May flowers' kind of weather. So allergies have been up...I had to pick up Son from school late yesterday because he was coughing up a lung. Thank goodness for effective cough medicine.
After three days of being stuck at home, I needed to get out. Despite the mist, rain and general yuckiness, we managed to escape to the Mall and walk around a bit. I make it a point to walk around at least twice a week (Concord Mills is an oval-shaped track, about 1 1/4 miles if you go all the way around). Not only does it ease the pain in my joints, I get to say hi to some of my friends who work there (like Ray the Auntie Annie's Pretzel Guy). It's for my mental sanity as well as physical comfort. Hooray for being able to talk to an adult about something other than the Wiggles and IEP meetings!
I need a vacation to the Bahamas or the Florida Keys. I'll settle for someplace that actually has SUN!
All original writing and art copyright A. Dameron 2000-2011
The past few days have been cold, gray and rainy. In other words, typical "April showers bring May flowers' kind of weather. So allergies have been up...I had to pick up Son from school late yesterday because he was coughing up a lung. Thank goodness for effective cough medicine.
After three days of being stuck at home, I needed to get out. Despite the mist, rain and general yuckiness, we managed to escape to the Mall and walk around a bit. I make it a point to walk around at least twice a week (Concord Mills is an oval-shaped track, about 1 1/4 miles if you go all the way around). Not only does it ease the pain in my joints, I get to say hi to some of my friends who work there (like Ray the Auntie Annie's Pretzel Guy). It's for my mental sanity as well as physical comfort. Hooray for being able to talk to an adult about something other than the Wiggles and IEP meetings!
I need a vacation to the Bahamas or the Florida Keys. I'll settle for someplace that actually has SUN!
All original writing and art copyright A. Dameron 2000-2011
Monday, March 21, 2011
My General Well-Being after a Trip to the Rheumatologist...
'Nuff said.
All original writing and art copyright A. Dameron 2000-2011
Thursday, February 17, 2011
So Many Things to Chatter About...
Not too long ago, someone asked me an interesting question. "What's the purpose of your blog? Some people with rheumatoid arthritis have that as their focus (awareness and efforts for a cure). Others have special needs as their sole focus, some have just art. You go all over the place."
Yup, I sure do. My real-life friends know I tend to chatter about anything and everything and sometimes it reflects in how (and what I choose to) write. This particular blog is about writing and everyday life, though I do have separate ones for art (Phoenix Fire Arts) and special needs (Three Very Special Kids). All of these (and my RA) are important parts of my life and all the pieces are interconnected and interdependent. It's like a mosaic or a picture puzzle.
I trained as a linguist/philologist and language teacher, love to travel, eat too much chocolate and drink way too much coffee and tea. I'm exploring my Filipino, Chinese and Spanish heritage. I watch a lot of Star Trek, Doctor Who and Torchwood. I paint, draw, collage, and spend way too much money at the art supply store. I'm the one parked on the couch during football season and I cheer on Manchester United during that football season. I'm a Detroit Red Wings fan (courtesy of a language professor at the University of Virginia about 12 years ago. Thanks, Doctor Mac!). I'd rather live at the ocean than in the mountains, and I'd rather deal with warm temps than freezing cold.
And I've just written about all of those in one blog post.
All original writing and art copyright A. Dameron 2000-2011
Yup, I sure do. My real-life friends know I tend to chatter about anything and everything and sometimes it reflects in how (and what I choose to) write. This particular blog is about writing and everyday life, though I do have separate ones for art (Phoenix Fire Arts) and special needs (Three Very Special Kids). All of these (and my RA) are important parts of my life and all the pieces are interconnected and interdependent. It's like a mosaic or a picture puzzle.
I trained as a linguist/philologist and language teacher, love to travel, eat too much chocolate and drink way too much coffee and tea. I'm exploring my Filipino, Chinese and Spanish heritage. I watch a lot of Star Trek, Doctor Who and Torchwood. I paint, draw, collage, and spend way too much money at the art supply store. I'm the one parked on the couch during football season and I cheer on Manchester United during that football season. I'm a Detroit Red Wings fan (courtesy of a language professor at the University of Virginia about 12 years ago. Thanks, Doctor Mac!). I'd rather live at the ocean than in the mountains, and I'd rather deal with warm temps than freezing cold.
And I've just written about all of those in one blog post.
All original writing and art copyright A. Dameron 2000-2011
Wednesday, January 26, 2011
Note to self: Do not over-do, overexert, or overreact...
It's really bad for your mental, emotional and physical health.
Need to put that in my reminder in-box. And remember it next time.
That's all I 'm sayin'.
All original writing and art copyright A. Dameron 2000-2010
Need to put that in my reminder in-box. And remember it next time.
That's all I 'm sayin'.
All original writing and art copyright A. Dameron 2000-2010
Saturday, January 8, 2011
Can Someone Type with their Toenails?
Sorry, for the short writing blip, but my hands are too swollen this morning...
I wonder if you can type with your nose, or your toenails. Or your eyeballs.
I need that voice-recognition typing program. Sigh! Or better yet, new joints.
All original writing and art copyright A. Dameron 2000-2010
I wonder if you can type with your nose, or your toenails. Or your eyeballs.
I need that voice-recognition typing program. Sigh! Or better yet, new joints.
All original writing and art copyright A. Dameron 2000-2010
Thursday, December 16, 2010
Trying something new this season...
I'm eager to try new things, artistically speaking. I have a calligraphy pen with four different nibs, watercolor paints, black and gold calligraphy ink. The set's been sitting idle for the past year, since last Christmas. Lately, I've been reviewing both my Chinese and Japanese grammar and realized my kanji, katakana, hiragana, and Zhongwen are awful, since I haven't been practicing lately. My writing in English is decent (for a left hander, anyway), but you still need a decoder to read it.
So I'm back to practicing my characters with pen and ink. Earlier this week, I found some bottles of colored ink at Hobby Lobby for 40% off and picked those up as well. My hands aren't up to fine detail work anymore, but I think I can manage to do some ATCs (artist trading cards) and postcards with them.
Wish me luck and that my hands will cooperate in this new undertaking. :-D
All original writing and art copyright A. Dameron 2000-2010
So I'm back to practicing my characters with pen and ink. Earlier this week, I found some bottles of colored ink at Hobby Lobby for 40% off and picked those up as well. My hands aren't up to fine detail work anymore, but I think I can manage to do some ATCs (artist trading cards) and postcards with them.
Wish me luck and that my hands will cooperate in this new undertaking. :-D
All original writing and art copyright A. Dameron 2000-2010
Monday, November 8, 2010
A Short Letter to my Painful Joints
Dear Physical Body (especially my overenthusiastic immune system),
I know that the weather's changing from summer to fall. It's crisp and cold outside and we've had to put the heater on. The ouchies in my joints usually grow worse during these transitional months. I was expecting that after five years, so it's not a surprise. I've got the Icy-Hot, Advil and methotrexate all lined up.
But please, do you mind sparing my hands these days? I can't write or draw without them, and if I can't do either, I will absolutely, positively go insane.
Thanks much,
Me
All original writing and art copyright A. Dameron 2000-2010
I know that the weather's changing from summer to fall. It's crisp and cold outside and we've had to put the heater on. The ouchies in my joints usually grow worse during these transitional months. I was expecting that after five years, so it's not a surprise. I've got the Icy-Hot, Advil and methotrexate all lined up.
But please, do you mind sparing my hands these days? I can't write or draw without them, and if I can't do either, I will absolutely, positively go insane.
Thanks much,
Me
All original writing and art copyright A. Dameron 2000-2010
Saturday, October 30, 2010
Sickness Affects Your Outlook (and your Productivity)
Yes, I'm back after a few days of being sick. I'm still tired as all get out, but at least I've got coffee.
A flare-up of my rheumatoid arthritis made my hands so swollen I couldn't type, draw or paint. The medicine I take for RA saps my strength and makes me just want to curl up and sleep. That doesn't do wonders for the productivity factor. My brain tries to push my body into doing something, anything, but my joints inform me, "I'm not going to cooperate. Go to bed. Thank you."
Frustrations abound, big time. Even now, I get impatient at my body's limitations. "Okay, now that you've had your little R&R, I've got to play catch-up." And the Muse shoots back with, "There really isn't any good time to have a breakdown. I don't care if you're Human or a car. Live with it."
Live with it. Writing, at least, is flexible enough that I can do it anywhere, even when I'm stuck in bed. Even if I scratch out a few words, it's better than not having written at all. A little writing goes a long way, and my mind says, "At least I'm getting something done and it doesn't matter if it looks like chicken scratch. I'm a linguist, I can handle it." And when I'm better, I can transcribe it to the computer.
But still, I've never been one who did well just being sick. And it's true that if you don't give your body the rest it needs, it'll take that much longer to recover. It's like a chain of dominoes...when one falls, they all fall and you can't do anything to stop the process. When it's all over, you just pick 'em up and set them up again.
Isn't that how life goes anyway?
All original writing and art copyright A. Dameron 2000-2010
A flare-up of my rheumatoid arthritis made my hands so swollen I couldn't type, draw or paint. The medicine I take for RA saps my strength and makes me just want to curl up and sleep. That doesn't do wonders for the productivity factor. My brain tries to push my body into doing something, anything, but my joints inform me, "I'm not going to cooperate. Go to bed. Thank you."
Frustrations abound, big time. Even now, I get impatient at my body's limitations. "Okay, now that you've had your little R&R, I've got to play catch-up." And the Muse shoots back with, "There really isn't any good time to have a breakdown. I don't care if you're Human or a car. Live with it."
Live with it. Writing, at least, is flexible enough that I can do it anywhere, even when I'm stuck in bed. Even if I scratch out a few words, it's better than not having written at all. A little writing goes a long way, and my mind says, "At least I'm getting something done and it doesn't matter if it looks like chicken scratch. I'm a linguist, I can handle it." And when I'm better, I can transcribe it to the computer.
But still, I've never been one who did well just being sick. And it's true that if you don't give your body the rest it needs, it'll take that much longer to recover. It's like a chain of dominoes...when one falls, they all fall and you can't do anything to stop the process. When it's all over, you just pick 'em up and set them up again.
Isn't that how life goes anyway?
All original writing and art copyright A. Dameron 2000-2010
Subscribe to:
Posts (Atom)