If you could change one thing about your body, what would it be?
I'd ask for different hands, unlike my teenage self who would've said she wanted a flatter stomach.
I distinctly remember the day where I realized how ashamed I actually was of my hands. My mother had just had surgery for a deviated septum and asked me to go with her for her follow up doctors visit. I sat in the waiting room crocheting (not knitting, which involves two needles and which I loathe doing) as we waited for her name to be called. An old lady came out into the waiting room then. Her eyes locked onto the hat that I was working on. "Oh, I used to crochet when I was younger. I miss it a lot, but I've got Rheumatoid. She lifted a hand off of her cane to show me what she meant. Her hands were completely deformed (I think it's called swan neck deformity), mangled much in the same way that you would see in a cartoon where the character's hand was run over by an army tank. I couldn't stomach it. My mother continued talking with her, while I sat there trying to prevent a panic attack. There was a lump in my throat, no air in my lungs. If she stood there any longer, I was going to have to leave the room to hyperventilate.
She finally left. I was ready to faint. My mother saw how red my face is, how puffy my eyes were from holding back tears. Seeing pictures of something is one thing. Seeing it in person is a whole different ballgame. "Medicine has come a long way," Mom said, knowing what I was thinking.
I stretched my hands out in front of me. I wasn't in remission then, and I was living with the idea that remission would never happen and that my joints would continue to disintegrate. I studied my hands intently. They were swollen and red from the heat my joints were throwing off. There were dips in my knuckles from where my finger joints were separating. If I moved one finger, they all had to move from lack of flexibility (it's still really hard to flip someone off). There was no chance of straightening my fingers out, so I was walking around with monster claws. Even though I'm in remission now, the damage that was done to my hands is irreversible.
Is there a little bit of vanity here? Yep. I don't get manicures or wear rings because I'm so self conscious about my hands. I'd rather walk around campus in a bikini. That lady taught me something important though. Why do we let our fears about how we look prevent us from doing the things we love? I don't know how she feels about the way she looks and never will, but she sure as hell wasn't happy with the fact that she couldn't do something she loves anymore.
I worry about how long my hands will be functioning. Will I have to stop crocheting one day? Will I need to give up my jewelry business? What about chopping onions for dinner?
I don't know what the future will bring. My boyfriend asks me all the time why I keep picking up new hobbies. Why not? If I'm not gonna have use of my hands in 40 years, then why shouldn't I try as much as I can now?
Showing posts with label positivity. Show all posts
Showing posts with label positivity. Show all posts
Monday, November 25, 2013
Sunday, November 10, 2013
Remission Possible
Yesterday I had my quarterly appointment with my Rheumatologist. I'm not going to lie: I was freaking out. I've been anxious every day since I got my blood work done two weeks ago. I'm always a mess prior to my doctor visits because of the "unknown" that comes with these appointments. I might think I'm fine, but my rheumy might see otherwise as he examines my joints.
My biggest fear was that he would think it necessary to put me on a stronger medication like Methotrexate, which is a chemo drug. That's the last thing I want to put in my body. I already felt awful about taking my prescription anti-inflammatory. I suppose it comes from belonging to a family that believes in the power of homeopathic treatments. Or maybe it comes from all of the black box warnings that come with my anti-inflammatory.
I sat in the doctor's office nervously tapping my foot. Was I about to receive news that would flip my future upside down? Or would I instead be told that everything looks decent enough and that I could stay on my current treatment plan, but that there was no real improvement? The second scenarios is just as frustrating as the first. The second scenario shows no change, no progress. It doesn't bring a person closer to pain-free days. It just means that your medication is doing the bare minimum. The only thing working in my benefit was that I wasn't in pain at that moment in time. I hadn't felt anything more than some random aches for a week.
My rheumy called me into his office then. He asked me how I was feeling, as always. "Better than usual," I said. He took my hands and began examining them.
"Your hands look great," he said, feeling my knuckles, "no inflammation whatsoever. Are you taking your anti-inflammatory?" I shook my head. "That's a great sign," he continued, "no pain?"
"I haven't been in pain at all for a week. I started taking fish oil." He continued examining my elbows and knees.
"Well, I don't know how much the fish oil contributed, but I think you're in remission. Let's look at the numbers." He pulled out my report and started reading off the results, comparing them to the last test. "I think you're in remission. Keep doing whatever you're doing."
Remission. When I first diagnosed, that was the thing I wanted most in the whole world. Now three years to the month of my diagnosis, I've achieved it. I was floating on a cloud, and I wanted to tell the entire world how happy I was. I ran to my one on-campus job just to tell my boss the good news. She had been trying to help me find natural cures. I told every coworker who would listen. And even though I'm not the kind of person who likes to air all of my business on Facebook, I posted about it there too. 70 people "liked" my status and congratulated me. I was touched that people cared, at least enough to comment with congratulations and well wishes.
Now, how did I really know when I was in remission? I knew it was for real when I picked up a skinny Papermate pen and could sign my name without pain. I couldn't hold back the tears anymore. I sat in my room and sobbed. This was real.
I know it's not permanent. Remission isn't a cure, only a period where the disease lies dormant. I may flare again next week. I may not flare for another few months or years. But trust me when I say that I'm making the most of this moment, the fact that I'm in little to no pain, and that I'm seriously loving my life right now.
My biggest fear was that he would think it necessary to put me on a stronger medication like Methotrexate, which is a chemo drug. That's the last thing I want to put in my body. I already felt awful about taking my prescription anti-inflammatory. I suppose it comes from belonging to a family that believes in the power of homeopathic treatments. Or maybe it comes from all of the black box warnings that come with my anti-inflammatory.
I sat in the doctor's office nervously tapping my foot. Was I about to receive news that would flip my future upside down? Or would I instead be told that everything looks decent enough and that I could stay on my current treatment plan, but that there was no real improvement? The second scenarios is just as frustrating as the first. The second scenario shows no change, no progress. It doesn't bring a person closer to pain-free days. It just means that your medication is doing the bare minimum. The only thing working in my benefit was that I wasn't in pain at that moment in time. I hadn't felt anything more than some random aches for a week.
My rheumy called me into his office then. He asked me how I was feeling, as always. "Better than usual," I said. He took my hands and began examining them.
"Your hands look great," he said, feeling my knuckles, "no inflammation whatsoever. Are you taking your anti-inflammatory?" I shook my head. "That's a great sign," he continued, "no pain?"
"I haven't been in pain at all for a week. I started taking fish oil." He continued examining my elbows and knees.
"Well, I don't know how much the fish oil contributed, but I think you're in remission. Let's look at the numbers." He pulled out my report and started reading off the results, comparing them to the last test. "I think you're in remission. Keep doing whatever you're doing."
Remission. When I first diagnosed, that was the thing I wanted most in the whole world. Now three years to the month of my diagnosis, I've achieved it. I was floating on a cloud, and I wanted to tell the entire world how happy I was. I ran to my one on-campus job just to tell my boss the good news. She had been trying to help me find natural cures. I told every coworker who would listen. And even though I'm not the kind of person who likes to air all of my business on Facebook, I posted about it there too. 70 people "liked" my status and congratulated me. I was touched that people cared, at least enough to comment with congratulations and well wishes.
Now, how did I really know when I was in remission? I knew it was for real when I picked up a skinny Papermate pen and could sign my name without pain. I couldn't hold back the tears anymore. I sat in my room and sobbed. This was real.
I know it's not permanent. Remission isn't a cure, only a period where the disease lies dormant. I may flare again next week. I may not flare for another few months or years. But trust me when I say that I'm making the most of this moment, the fact that I'm in little to no pain, and that I'm seriously loving my life right now.
Monday, October 21, 2013
Facebook Downers
In my last post I talked about how I love to find inspirational RA sufferers to connect with. Unfortunately, not everyone agrees with my philosophy that motivation from others will help you cope better. I found that out the hard way. Shortly after my diagnosis, I had this crazy idea that I could find myself a decent support group via Facebook that would help me cope with the early and extremely painful stages of RA while the medication was still trying to kick in and I was extremely depressed by my sudden diagnosis. Wrong. Stupid, in fact. There are a lot of people who don't want help or motivation want to spread their negativity like a virus and use Facebook to to accomplish this scheme.
I joined a group (that shall be left nameless) that offered some pretty helpful tips and tricks for everyday life and posted some really amazing quotes and photos to keep people's spirits up. But it was a bipolar experience. The picture or meme or whatever the owner of the page posted would make me feel amazing. Then my gaze would travel downwards, as tends to happen on Facebook, to the comments section, where everyone and their mother would start bashing the original post. The comments ranged from criticizing the page for posting something unrealistic, to people arguing about who was in more pain that day. And God forbid you were a "positive commenter." No positivity allowed there. If you had the guts to post something upbeat, you knew that you were going to be torn apart and accused of not being in enough pain or understanding "the struggle that we go through everyday."
Needless to say, I wound up "unliking" the page in record time. I know it happens more often than not, but don't understand why people feel the need to remain in a cycle of negative thinking. I totally agree that we all need to vent sometimes. It's not healthy to bottle anything up. But repetitive negative thinking and complaining never makes me feel good. I feel completely helpless and hopeless instead. Maybe this makes me an unsympathetic person. Maybe not. I don't think everyone intentionally sets out to make everyone else miserable by pulling them into the chronic illness abyss, but it makes me angry nonetheless. I get cranky from the pain sometimes too, but there's a fine line between reaching out for help and sucking the life out of the next available victim. These are not the people I want to be surrounded by. I want to make the most of my life, not sit in front of a computer thinking about all of the ways to make some person living across the country's life more difficult.
I joined a group (that shall be left nameless) that offered some pretty helpful tips and tricks for everyday life and posted some really amazing quotes and photos to keep people's spirits up. But it was a bipolar experience. The picture or meme or whatever the owner of the page posted would make me feel amazing. Then my gaze would travel downwards, as tends to happen on Facebook, to the comments section, where everyone and their mother would start bashing the original post. The comments ranged from criticizing the page for posting something unrealistic, to people arguing about who was in more pain that day. And God forbid you were a "positive commenter." No positivity allowed there. If you had the guts to post something upbeat, you knew that you were going to be torn apart and accused of not being in enough pain or understanding "the struggle that we go through everyday."
Needless to say, I wound up "unliking" the page in record time. I know it happens more often than not, but don't understand why people feel the need to remain in a cycle of negative thinking. I totally agree that we all need to vent sometimes. It's not healthy to bottle anything up. But repetitive negative thinking and complaining never makes me feel good. I feel completely helpless and hopeless instead. Maybe this makes me an unsympathetic person. Maybe not. I don't think everyone intentionally sets out to make everyone else miserable by pulling them into the chronic illness abyss, but it makes me angry nonetheless. I get cranky from the pain sometimes too, but there's a fine line between reaching out for help and sucking the life out of the next available victim. These are not the people I want to be surrounded by. I want to make the most of my life, not sit in front of a computer thinking about all of the ways to make some person living across the country's life more difficult.
Sunday, October 20, 2013
An Inspirational Athlete
Having RA can be a lonely experience. RA sufferers are a mere 1% of the US population, and we don't exactly congregate on our own little island. Because of that, many of us take to the Internet for support. I'm not sure what I would do without social media, especially on the particularly miserable days where life seems bleak. That's part of the reason why I started blogging about my experiences, and why I spend a lot of time each week reading about other RA patients.
There's a lot of advice out there. Don't run because it'll damage your joints. Just do some light walking. You won't be able to handle intense exercises. Rest a lot. It gives me the impression that people with RA should be lazy, or have no choice but to be lazy. I guess an even worse impression would be that people with RA should just accept that they're not like everyone else and can't accomplish the same things.
Then I somehow found myself reading Angela Durazo's blog, "I Am a Triathlete With RA." The tag line on her blog reads, "I refuse to be a victim," and she definitely isn't. According to the "About Me" section of her blog, Durazo is a model turned triathlete who trains 7 days a week. Her writing chronicles all of her struggles, from finding the right diet to being fitted for a bike that will help keep her pain-free during races. She writes about her agonizing trips to the Emergency Room as well as the physical deformities she's experiencing.
Durazo was pretty much unable to take care of herself when first diagnosed at 20 (which is around the age I got diagnosed). But unlike many (including myself), she didn't let her RA hold her back, because if she did, she probably wouldn't have graced the cover of the last issue of Arthritis Today:
This is the person I strive to be, especially on days when I think I'll never be able to be my old self again. If only we could all have her mentality...
There's a lot of advice out there. Don't run because it'll damage your joints. Just do some light walking. You won't be able to handle intense exercises. Rest a lot. It gives me the impression that people with RA should be lazy, or have no choice but to be lazy. I guess an even worse impression would be that people with RA should just accept that they're not like everyone else and can't accomplish the same things.
Then I somehow found myself reading Angela Durazo's blog, "I Am a Triathlete With RA." The tag line on her blog reads, "I refuse to be a victim," and she definitely isn't. According to the "About Me" section of her blog, Durazo is a model turned triathlete who trains 7 days a week. Her writing chronicles all of her struggles, from finding the right diet to being fitted for a bike that will help keep her pain-free during races. She writes about her agonizing trips to the Emergency Room as well as the physical deformities she's experiencing.
Durazo was pretty much unable to take care of herself when first diagnosed at 20 (which is around the age I got diagnosed). But unlike many (including myself), she didn't let her RA hold her back, because if she did, she probably wouldn't have graced the cover of the last issue of Arthritis Today:
 |
| Taken from Durazo's Blog http://triathleteracingwithra.wordpress.com/ |
Sunday, October 13, 2013
Sincere Thanks to the Conklin Hand Dryers
It's gettin' cold out. As much as I love Autumn for its pumpkin coffee, apple cider doughnuts, and the ability to wear boots at every possible moment, I hate that the temperature is slowly dropping. That means Winter isn't very far behind. I hate the cold weather, since it makes RA symptoms worse. The flares are longer and move severe, and the numbing cold is harder to tolerate. Plus, some people with RA run constant low-grade fevers, which means getting the chills more frequently.
It's definitely the most difficult time of the year to function. The worst part? The cold weather is also right smack in the middle of the school year. Sometimes I wish that my parents took one of the opportunities they were given to move to warmer States.
So, what's a girl to do?
I realized that I needed to be crafty. Stiffness is always unavoidable during the Winter. I needed a quick solution to unfreeze my hands while on campus, since I don't have the comforts of home. I spend most of my time in Conklin Hall when I'm on campus, since I work there. It dawned on me one day when I was in the bathroom: the hand dryers!
Believe me, I’m not as crazy as this sounds. Here’s the thing: when you have RA, you’re in pain most of the time. Even on days when the fatigue doesn’t hit you, you’re bound to have joint pain. Since being negative and complaining about it usually only makes it worse, at least for me, I try to find other ways to find some temporary relief. Along with my daily doses of medication, I’ve noticed that heat does wonders for my joints. Hence the hand dryer. On cold days, rainy days, or any other day that I’m flaring, I go into the bathroom at work every so often just to run my hands under the air dryers. I find that it loosens up my joints just enough to make it easier for me to type. Okay, maybe I am crazy, but I’d rather have people look at me like I’m nuts than not be able to do anything productive all day.
I’m stuck with this disease for the rest of my life. It’s not going to magically get better one day. The best approach to finding relief is a proactive one, whether that means holding a hair dryer to your toes or wrapping yourself up in an electric blanket. Even the most rudimentary methods will help. Trust me.
It's definitely the most difficult time of the year to function. The worst part? The cold weather is also right smack in the middle of the school year. Sometimes I wish that my parents took one of the opportunities they were given to move to warmer States.
So, what's a girl to do?
I realized that I needed to be crafty. Stiffness is always unavoidable during the Winter. I needed a quick solution to unfreeze my hands while on campus, since I don't have the comforts of home. I spend most of my time in Conklin Hall when I'm on campus, since I work there. It dawned on me one day when I was in the bathroom: the hand dryers!
Believe me, I’m not as crazy as this sounds. Here’s the thing: when you have RA, you’re in pain most of the time. Even on days when the fatigue doesn’t hit you, you’re bound to have joint pain. Since being negative and complaining about it usually only makes it worse, at least for me, I try to find other ways to find some temporary relief. Along with my daily doses of medication, I’ve noticed that heat does wonders for my joints. Hence the hand dryer. On cold days, rainy days, or any other day that I’m flaring, I go into the bathroom at work every so often just to run my hands under the air dryers. I find that it loosens up my joints just enough to make it easier for me to type. Okay, maybe I am crazy, but I’d rather have people look at me like I’m nuts than not be able to do anything productive all day.
I’m stuck with this disease for the rest of my life. It’s not going to magically get better one day. The best approach to finding relief is a proactive one, whether that means holding a hair dryer to your toes or wrapping yourself up in an electric blanket. Even the most rudimentary methods will help. Trust me.
Tuesday, September 24, 2013
On a Positive Note...
There's no denying that having RA is downright awful sometimes. There can be low moments for sure. Instead of focusing on the negative though, I want this post to be about some of the positive things that have come from being diagnosed with an autoimmune disease. So here they are:
1. I can't donate blood. You might ask how this could be viewed as something positive. You might feel like lecturing me on the importance of charity, or give me some statistics on how many people rely on donated blood. Don't get me wrong here. I admire and appreciate all people who have no problem with donating, mainly because I'm petrified of needles. The idea of being stabbed and subsequently having a large bag of blood removed from my person is enough to make me hyperventilate. This is where having RA becomes positive. People with autoimmune diseases aren't allowed to give blood (mostly because of medications and unknown disease factors). So when I'm asked if I would be willing to donate I don't have to make up excuses to hide my needle phobia from the general. I have an honest reason not to. However, karma still gets me: I need to have blood tests done every three months. I can't win. But at least I only have to face my rheumatologist's lab tech. And, maybe some blog readers...
2. I can predict the weather. This is not a myth. Nor is it a type of magic. If I wake up one morning and my right shoulder is stiff and creaky, I know it's going to rain that day. This is helpful on days when I run out of the house without checking the weather. At least I'll know to grab an umbrella. Rain and RA don't make for a pleasant combination, but at least I can impress small children with my "magic powers."
3. I have an excuse to take time for myself. I've always been that person who never said "no." I went through high school and most of college thinking that I was Superwoman. I took on multiple jobs, volunteer work, full time school, and a social life. RA has definitely slowed me down, but that's a good thing. Sometimes we get so wrapped up in whatever we're doing that we forget to slow down and enjoy life or take breaks. I used to just say, "Oh yeah, I'm tired, but all people who work hard are." My diagnosis changed that mode of thinking. Now I realize that it's okay (and important) for me to say no, because at the end of the day, if I'm not healthy and happy, I'm useless to everyone else.
1. I can't donate blood. You might ask how this could be viewed as something positive. You might feel like lecturing me on the importance of charity, or give me some statistics on how many people rely on donated blood. Don't get me wrong here. I admire and appreciate all people who have no problem with donating, mainly because I'm petrified of needles. The idea of being stabbed and subsequently having a large bag of blood removed from my person is enough to make me hyperventilate. This is where having RA becomes positive. People with autoimmune diseases aren't allowed to give blood (mostly because of medications and unknown disease factors). So when I'm asked if I would be willing to donate I don't have to make up excuses to hide my needle phobia from the general. I have an honest reason not to. However, karma still gets me: I need to have blood tests done every three months. I can't win. But at least I only have to face my rheumatologist's lab tech. And, maybe some blog readers...
2. I can predict the weather. This is not a myth. Nor is it a type of magic. If I wake up one morning and my right shoulder is stiff and creaky, I know it's going to rain that day. This is helpful on days when I run out of the house without checking the weather. At least I'll know to grab an umbrella. Rain and RA don't make for a pleasant combination, but at least I can impress small children with my "magic powers."
3. I have an excuse to take time for myself. I've always been that person who never said "no." I went through high school and most of college thinking that I was Superwoman. I took on multiple jobs, volunteer work, full time school, and a social life. RA has definitely slowed me down, but that's a good thing. Sometimes we get so wrapped up in whatever we're doing that we forget to slow down and enjoy life or take breaks. I used to just say, "Oh yeah, I'm tired, but all people who work hard are." My diagnosis changed that mode of thinking. Now I realize that it's okay (and important) for me to say no, because at the end of the day, if I'm not healthy and happy, I'm useless to everyone else.
Subscribe to:
Posts (Atom)