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?
Monday, November 25, 2013
Wednesday, November 20, 2013
Breakup Letter to My Favorite Sneakers
To My Dear Black Sneakers,
We've been through so much together. We first met five years ago when my new movie theater job required that I have all black sneakers. I was frustrated about having to go out and drop money on new shoes simply because the black sneakers I was already in a relationship with had a light gray strip on them and they weren't allowed. I walked into the independent shoe store near my house, and I was somehow magically drawn to you. We've been pretty much inseparable since then.
We've spent seven days a week together since; we went to class together Monday through Thursday and to work Friday through Sunday. You supported me during those long 14 hour shifts spent selling popcorn and cleaning up theaters. We went to bars together, experienced first loves together, and traveled around the country together. But most importantly, we got through a pretty nasty diagnosis together.
Nobody understood the frustration that comes from not being able to wear 95% of the shoes on the market without some sort of pain (Exhibit A). It's expected that women my age wear heels when they go out partying. Friends made (eh, still make) fun of me for wearing nothing but sneakers. But you understood. You made sure to keep me comfortable and pain free, at least in terms of my extremely swollen and achy feet. You'll never understand how appreciative I am of that.
Unfortunately, my doctors don't want us together anymore. The podiatrist I saw a few weeks ago said that you're old and worn down, and that you'll be unable to care for my needs much longer. Even the custom inserts that are being made for my shoes won't be able to salvage our relationship. Besides, my feet have become so swollen from the RA that I've gone up half a shoe size since we first met. People grow and change; you need to understand that.
As sad as it is to say, I've already replaced you; there's a box containing brand new sneakers sitting on a chair in the kitchen. If it makes you feel better, they aren't Nikes and they aren't black. Doc wants me to wear New Balance or Asics from now on for their extra support, but finding all black sneakers in those brands is turning out to be an impossible task.
Please comfort yourself with the fact that you are the longest relationship I've ever maintained thus far.
Love,
Alyssa
We've been through so much together. We first met five years ago when my new movie theater job required that I have all black sneakers. I was frustrated about having to go out and drop money on new shoes simply because the black sneakers I was already in a relationship with had a light gray strip on them and they weren't allowed. I walked into the independent shoe store near my house, and I was somehow magically drawn to you. We've been pretty much inseparable since then.
We've spent seven days a week together since; we went to class together Monday through Thursday and to work Friday through Sunday. You supported me during those long 14 hour shifts spent selling popcorn and cleaning up theaters. We went to bars together, experienced first loves together, and traveled around the country together. But most importantly, we got through a pretty nasty diagnosis together.
Nobody understood the frustration that comes from not being able to wear 95% of the shoes on the market without some sort of pain (Exhibit A). It's expected that women my age wear heels when they go out partying. Friends made (eh, still make) fun of me for wearing nothing but sneakers. But you understood. You made sure to keep me comfortable and pain free, at least in terms of my extremely swollen and achy feet. You'll never understand how appreciative I am of that.
Unfortunately, my doctors don't want us together anymore. The podiatrist I saw a few weeks ago said that you're old and worn down, and that you'll be unable to care for my needs much longer. Even the custom inserts that are being made for my shoes won't be able to salvage our relationship. Besides, my feet have become so swollen from the RA that I've gone up half a shoe size since we first met. People grow and change; you need to understand that.
As sad as it is to say, I've already replaced you; there's a box containing brand new sneakers sitting on a chair in the kitchen. If it makes you feel better, they aren't Nikes and they aren't black. Doc wants me to wear New Balance or Asics from now on for their extra support, but finding all black sneakers in those brands is turning out to be an impossible task.
Please comfort yourself with the fact that you are the longest relationship I've ever maintained thus far.
Love,
Alyssa
Wednesday, November 13, 2013
RA Famous
People
glorify celebrities, sometimes to the point of making them seem immortal. But
even famous people have to deal with the not-so-pleasant realities of life, and
that often includes battles with incurable illness.
When
I was first diagnosed I took to the Internet to make connections with other
people just like me. Google suggested that I search "Famous people with
RA." Sure, why not? I was actually a bit surprised by the information that
popped up. I've included a few of these people here:
Lucille
Ball
The
star of the classic TV show I Love Lucy was diagnosed with RA as a
teenager (some sources say 17, others say she was 19). She had to stop modeling
because of a really bad flareup that made it impossible for her to walk. She
launched her acting career after recovering from that flare.
Pierre-Auguste
Renoir
Not even famous painters are safe from RA. RA caused
deformities in his hands that made it impossible for him to paint like a
"normal" painter. He could no longer pick up his brushes and had to
have his relatives tape them to his hands. Renoir's situation takes the idea of
the invisible illness even further. I dare you to try to find signs of joint
deformities in any of his paintings.
Sandy Koufax
The jury is still out for Koufax. The baseball pitcher
definitely had an inflammatory disease like RA, but he was never actually
diagnosed as having it. He eventually had to stop pitching because of the
damage to his elbow.
Christiaan
Barnard
The
first doctor to do a human-to-human heart transplant had RA. Sixteen years
after this feat, Barnard had to retire from his surgical career because he no
longer had the dexterity in his hands needed to operate.
Clearly, people with RA are able to go on and have
successful careers. Having the disease doesn't mean I have to spend the rest of
my life in bed. When I was first diagnosed, I thought that it would be a death
sentence for my writing career. How could I be a writer if I couldn't hold a
pen or type? I realize now that it was a foolish thing to think. If Renoir
found a way to paint back in his day, I can find a piece of technology to keep
me going. Maybe I won't have use of my hands for the rest of my life. That's
all the more reason to live it up now and make the most of it.
Source: http://www.health.com/health/gallery/0,,20496769_4,00.html
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.
Saturday, November 2, 2013
Ignorance is a Plague
I never thought I would believe in Astrology, but a recent string of events has me believing that Retrograde Mercury is in fact a real thing, and that it's out to make my life hell. Nothing has been going right for the past few weeks.
There was a day last week that was just all sorts of awful and also relevant to this blog. I was walking down the stairs to the light rail, as I do every weekday morning. There were two women walking slowly down the left side of the staircase, so I decided to stay to the right to pass them. Apparently I wasn't moving fast enough for the guy behind me, who felt he was justified in using both hands to push me forward from behind to get me out of his way faster. Unlike me, he had a train to catch. Fortunately, I have a habit of always keeping my hand close to the railing, just in case I lose a battle with gravity (or, ya know, get pushed from behind by an inconsiderate douchebag in a suit, because that apparently happens more frequently than originally thought).
After I calmed down and stopped wishing horrible bouts of diarrhea on the guy (with lots of expletives in between), I started thinking about how glad I was that he pushed me and not someone else. What if it had been an old lady that he pushed? Or a pregnant lady? Or maybe someone else with a really bad medical condition who wouldn't be able to catch herself? Did he only have the guts to push me because he thought I was able-bodied enough to not get hurt? Or did it not matter, because I was a woman and wouldn't fight back anyway? None of this excuses the fact that he did it, of course. Some people are self-centered enough to really not care who they are hurting as long as they aren't inconvenienced.
Anyway, this goes back to the point I was making about invisible illnesses awhile ago. Just because a person seems healthy doesn't mean they are. And just because you're in a rush doesn't mean you have a right to inconvenience others, or make them eat concrete for that matter. I think we need to bring back those Victorian etiquette classes...
There was a day last week that was just all sorts of awful and also relevant to this blog. I was walking down the stairs to the light rail, as I do every weekday morning. There were two women walking slowly down the left side of the staircase, so I decided to stay to the right to pass them. Apparently I wasn't moving fast enough for the guy behind me, who felt he was justified in using both hands to push me forward from behind to get me out of his way faster. Unlike me, he had a train to catch. Fortunately, I have a habit of always keeping my hand close to the railing, just in case I lose a battle with gravity (or, ya know, get pushed from behind by an inconsiderate douchebag in a suit, because that apparently happens more frequently than originally thought).
After I calmed down and stopped wishing horrible bouts of diarrhea on the guy (with lots of expletives in between), I started thinking about how glad I was that he pushed me and not someone else. What if it had been an old lady that he pushed? Or a pregnant lady? Or maybe someone else with a really bad medical condition who wouldn't be able to catch herself? Did he only have the guts to push me because he thought I was able-bodied enough to not get hurt? Or did it not matter, because I was a woman and wouldn't fight back anyway? None of this excuses the fact that he did it, of course. Some people are self-centered enough to really not care who they are hurting as long as they aren't inconvenienced.
Anyway, this goes back to the point I was making about invisible illnesses awhile ago. Just because a person seems healthy doesn't mean they are. And just because you're in a rush doesn't mean you have a right to inconvenience others, or make them eat concrete for that matter. I think we need to bring back those Victorian etiquette classes...
Wednesday, October 30, 2013
You're Cordially Invited to an Ailment Party
RA is a systemic disease. It doesn't favor just a person's joints. It affect hair, skin, nails, and internal organs too. Because of this, a person with RA can experience more than just joint damage. according
to an article on health.com, a person with RA has double the risk for heart attack or stroke than a healthy person the same age. RA is considered as big of a risk factor for heart disease as smoking! Doctors think that the chronic inflammation that comes with having RA is a factor, but some medications that RA patients are given might play a role as well.
Did you know that people with RA are also more likely to get cancer? Again, while it's more likely because of the disease itself, the meds are also more likely to contribute. Chemo drugs are often prescribed for treatment because they can knock the immune system into remission. Actually, quite a few of the medications used to treat RA are meant for other things (the drug I'm on is given to travelers as an anti-malarial, though obviously I get higher doses of it). But back to my point: chemo drugs are known to cause cancer. Chemo, which is used to treat cancer, causes cancer. I'm still trying to wrap my head around that. Non-Hodgkin’s lymphoma has been linked to RA, according to this same health.com, as well as leukemia, some forms of lymphoma, lung cancer, and melanoma.
Autoimmune diseases like to travel in packs too. For example, my mom has both RA and Lupus. I know of other people who have RA and Fibromyalgia. Sometimes people have RA and Multiple Sclerosis.
to an article on health.com, a person with RA has double the risk for heart attack or stroke than a healthy person the same age. RA is considered as big of a risk factor for heart disease as smoking! Doctors think that the chronic inflammation that comes with having RA is a factor, but some medications that RA patients are given might play a role as well.
Did you know that people with RA are also more likely to get cancer? Again, while it's more likely because of the disease itself, the meds are also more likely to contribute. Chemo drugs are often prescribed for treatment because they can knock the immune system into remission. Actually, quite a few of the medications used to treat RA are meant for other things (the drug I'm on is given to travelers as an anti-malarial, though obviously I get higher doses of it). But back to my point: chemo drugs are known to cause cancer. Chemo, which is used to treat cancer, causes cancer. I'm still trying to wrap my head around that. Non-Hodgkin’s lymphoma has been linked to RA, according to this same health.com, as well as leukemia, some forms of lymphoma, lung cancer, and melanoma.
Autoimmune diseases like to travel in packs too. For example, my mom has both RA and Lupus. I know of other people who have RA and Fibromyalgia. Sometimes people have RA and Multiple Sclerosis.
I could probably write a whole book on all of the medical problems that come with an autoimmune disease, like chronic infections, anemia, depression, lung issues, stomach bleeding, etc. I won't though, because I've made my point already. There are a lot of risk factors, and information on these risk factors is available everywhere on the Internet. Then people wonder why people with RA are paranoid about switching medications, going for routine doctor's visits, and the like. I believe this is good information to have available, definitely. But like I said in an earlier post, it's easy to become overwhelmed and dwell on how negative things can be someday. I have moments when I do that too, as positive as I try to be all of the time. It happens.
Health.com article: http://www.health.com/health/gallery/0,,20485110.html
Monday, October 28, 2013
Meditative Moments
I admit to having a love-hate relationship with technology. Don't get me wrong, in some ways all of these technological advancements are a blessing. I have a wealth of RA information at my fingertips at all times. That numbness and tingling I'm feeling in my fingers? I can find a reason for it on Google. It was an Amazon search that introduced me to my favorite pen, which makes it possible for me to write again. On the days that it hurts too much to type I can just talk to my computer as I would if it was my best friend. My computer in turn will write my 8 page History paper for me. Technology rocks sometimes.
But as much as computers help a person like me to function, there's a dark side. It's easy to become overwhelmed by the plethora of information out there. This isn't helpful for a person has anxiety issues, especially when some health websites can convince you that you stomach ache is a sign of cancer. Social media is distracting and often prevents me from getting any writing done. One of my recent observations is that social media websites often lead people to feel bad about themselves. Admit it- one of your classmates from high school recently posted about a really cool new "grown up" job she just got, and you sat there thinking about how you'll never live up to that, or how you're a failure because you still work at a movie theater sweeping up popcorn.
This weekend I decided to experiment with a technology cleanse, similar to the way those health nuts do colon cleanses every other week. I shut the computer off. Threw the tablet in a drawer. I didn't reach for the TV remote or my iPod. I settled on the couch this armed only with my favorite pen and a notebook. If it had been dark out, I might have gone so far as to attempt to write by candlelight, since that's something I always said I wanted to try.
For once in my life, it was like the clouds had parted to allow a beam of light to hit me. The RA brain fog (which is a real thing!) that perpetually haunts took a back seat to my creativity. I wrote uninhibited, without stopping to check Facebook or to over think my sentences. I didn't stop to delete, rewrite, or censor my ideas. I wrote as fast as my shaky, arthritic hands would allow. Most importantly, I was calm. There was no anxiety to be perfect on the first try. There was no hesitation. There's something meditative about being able to turn off the world and focus on the moment. I was able to relax and just focus on my writing. I didn't have to worry about what was going on around me.
I learned a valuable lesson from shutting off all of my electronics. When a person has RA, they sometimes forget how important it is to take the time to back away from the world and center themselves. The more centered I am, the better I work. That's part of the reason why I put a technology ban in place to write this post. As ironic as this is, I think I'm going to start writing all of my blog posts offline.
But as much as computers help a person like me to function, there's a dark side. It's easy to become overwhelmed by the plethora of information out there. This isn't helpful for a person has anxiety issues, especially when some health websites can convince you that you stomach ache is a sign of cancer. Social media is distracting and often prevents me from getting any writing done. One of my recent observations is that social media websites often lead people to feel bad about themselves. Admit it- one of your classmates from high school recently posted about a really cool new "grown up" job she just got, and you sat there thinking about how you'll never live up to that, or how you're a failure because you still work at a movie theater sweeping up popcorn.
This weekend I decided to experiment with a technology cleanse, similar to the way those health nuts do colon cleanses every other week. I shut the computer off. Threw the tablet in a drawer. I didn't reach for the TV remote or my iPod. I settled on the couch this armed only with my favorite pen and a notebook. If it had been dark out, I might have gone so far as to attempt to write by candlelight, since that's something I always said I wanted to try.
For once in my life, it was like the clouds had parted to allow a beam of light to hit me. The RA brain fog (which is a real thing!) that perpetually haunts took a back seat to my creativity. I wrote uninhibited, without stopping to check Facebook or to over think my sentences. I didn't stop to delete, rewrite, or censor my ideas. I wrote as fast as my shaky, arthritic hands would allow. Most importantly, I was calm. There was no anxiety to be perfect on the first try. There was no hesitation. There's something meditative about being able to turn off the world and focus on the moment. I was able to relax and just focus on my writing. I didn't have to worry about what was going on around me.
I learned a valuable lesson from shutting off all of my electronics. When a person has RA, they sometimes forget how important it is to take the time to back away from the world and center themselves. The more centered I am, the better I work. That's part of the reason why I put a technology ban in place to write this post. As ironic as this is, I think I'm going to start writing all of my blog posts offline.
Friday, October 25, 2013
An Impractical Phobia
I'm going to open up about something here that I don't normally admit to people: I am absolutely, 100% terrified of, and disgusted by, blood tests and all forms of needles used for medical purposes. Whew.
Okay, now you think I'm the world's biggest crybaby. It's cool, I get it. I don't take offense. You may also be wondering why I specified "needles for medical purposes." Well, that's because anyone who knows me also knows that I at one point had 13 piercings (down to 10 now) and that I also have a very large tattoo on my left foot (which was an excruciating type of pain, I might add). These body modifications did not faze me one bit. My reasoning for this unreasonable logic is that I was voluntarily subjecting myself to that madness for the purpose of art. Blood tests and vaccines are not voluntary. Nor pleasant. Nor artistic.
My fear probably has something to do with the traumatizing blood test I had done at age 12. I guess the lab tech's comment about how her eye doctor had accidentally switched her contact prescription didn't register with my mother. Prior to this debacle, I had no fear of any sort of needle. I suppose multiple stabs, twisting needles and fainting tend to cause irrational fears. For someone like me, a phobia of needles is quite impractical. I have to get blood work done every three months so that my Rheumatologist can track how well my medication is working and make sure my internal organs aren't showing signs of damage.
This morning I had to get blood work done. The same lab tech takes my blood each time, and he's aware of my fear (probably from all of the sweating and shaking, and probably also from the fact that I refuse to watch). He tries to tease me. "Well Miss Pierce, at least you never have to worry about becoming a heroin addict" or "You better be nice to me, otherwise I'll use a bigger needle." Humor definitely helps calm me down. It also helps to know that he's aware my veins are hard to find, that he could only draw blood from my right arm, and that he needs to use a butterfly needle to do so. That sort of trust will help you conquer phobias.
Since I'll be getting jabbed with a needle every three months until the day I die, I know I eventually need to suck it up and get over my fear completely. Maybe a few more blood tests that go smoothly will help. Today I wasn't shaking as much as usual, and I did attempt to glance down at the blood being drawn. It's a good day and a small victory I'm proud of.
Okay, now you think I'm the world's biggest crybaby. It's cool, I get it. I don't take offense. You may also be wondering why I specified "needles for medical purposes." Well, that's because anyone who knows me also knows that I at one point had 13 piercings (down to 10 now) and that I also have a very large tattoo on my left foot (which was an excruciating type of pain, I might add). These body modifications did not faze me one bit. My reasoning for this unreasonable logic is that I was voluntarily subjecting myself to that madness for the purpose of art. Blood tests and vaccines are not voluntary. Nor pleasant. Nor artistic.
My fear probably has something to do with the traumatizing blood test I had done at age 12. I guess the lab tech's comment about how her eye doctor had accidentally switched her contact prescription didn't register with my mother. Prior to this debacle, I had no fear of any sort of needle. I suppose multiple stabs, twisting needles and fainting tend to cause irrational fears. For someone like me, a phobia of needles is quite impractical. I have to get blood work done every three months so that my Rheumatologist can track how well my medication is working and make sure my internal organs aren't showing signs of damage.
This morning I had to get blood work done. The same lab tech takes my blood each time, and he's aware of my fear (probably from all of the sweating and shaking, and probably also from the fact that I refuse to watch). He tries to tease me. "Well Miss Pierce, at least you never have to worry about becoming a heroin addict" or "You better be nice to me, otherwise I'll use a bigger needle." Humor definitely helps calm me down. It also helps to know that he's aware my veins are hard to find, that he could only draw blood from my right arm, and that he needs to use a butterfly needle to do so. That sort of trust will help you conquer phobias.
Since I'll be getting jabbed with a needle every three months until the day I die, I know I eventually need to suck it up and get over my fear completely. Maybe a few more blood tests that go smoothly will help. Today I wasn't shaking as much as usual, and I did attempt to glance down at the blood being drawn. It's a good day and a small victory I'm proud of.
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:
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| 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.
Friday, October 11, 2013
A Hairy Dilemma
Recently a friend invited me out for one of our weekly Starbucks runs. Our tradition is to buy our overly priced "handcrafted" coffee beverages and then walk along the waterfront to burn off the high calorie counts while catching up on life. On this particular night, we walked past a group of teenagers loitering around a bench and laughing obnoxiously. They became silent as we neared, and once my friend and I had walked a few feet passed them I heard them whisper, "What a dyke!"
This happens a lot, probably to the point where it shouldn't bother me anymore. I'm sure I give that impression to a lot of people, since I like shaving my parts of my hair off and I'm a tomboy at heart. But no, I'm not gay. It never fails to make me angry, though for more reasons than it would have years ago. These kids were more than likely basing this assumption on the fact that my hair is so short, without ever considering why my hair is short. It's an awful stereotype.
I've always had an interesting relationship with my hair. When I was a Freshman in high school, I decided I was bored with my current hair style and wanted something more daring. On a whim I cut my extremely thick, shoulder-length hair into a very short pixie. It was different, it was easy to manage, and I loved it. I kept it for the next 5 years.
Then I hit my 20s, and I realized I needed a change again. So I decided to grow my hair out. It was a pain, and it involved a lot of patience, headbands, and bobby pins, but I did it and I really loved having long hair again. The options were endless. Bun? Ponytail? Curly or straight? I could now do whatever I wanted.
But then a new problem arose. My new long and thick hair knotted quite easily. I didn't have the strength in my arms to brush out the knots. Sometimes I couldn't even lift my arms up above my head. That meant asking my mother to brush my hair for me every night after I showered. But then I needed to make sure that it didn't knot again in my sleep, which meant asking my sister to braid it (when Mom and I tried, our braids were an awkward mess because of our lack of dexterity).
I was beginning to get really frustrated. I had waited two years to grow my hair out again. I was supposed to be able to use hair dryers and flat irons (nope, too heavy, at least sometimes) without issue.
I realized I had a battle on my hands: my hair versus my freedom/dignity. Maybe that sounds really dramatic, but bear with me here. For many women, hair is a symbol of beauty and confidence. And here I was, with little confidence in my ability to take care of the messy mop on my head. Which in turn toyed with my self esteem. I didn't feel beautiful anymore because I couldn't even do the simplest of tasks. The hair had to go.
The trip to the hair salon was a bit somber. Mom came with me, and when we pulled up to the building I seriously thought about calling it off and going home. But I knew I had to do it. I had picked out a really cool cut, so at least I had something to look forward to.
And so they chopped it all off. I was back to pixie short. I've since gone even shorter, though I'm due for a haircut as of the writing of this post. I miss the length, but now I have something I can manage on my own. I just wish that I could have cut it just because I wanted to, not out of necessity.
This is one of the reasons why I have a problem with these kids. They'd never make fun of a chemo patient with no hair. At least, I hope they wouldn't. But many women out there are forced to chop off their hair because of illness, and they are forced to deal with being insulted by ignorant people on top of dealing with their own emotional insecurities. It's not fair to them at all. I'm used to this sort of behavior from having short hair most of my adult life, but let's try to help those other women out, okay? If you're one of those people making comments, it won't kill you to keep your mouth shut.
This happens a lot, probably to the point where it shouldn't bother me anymore. I'm sure I give that impression to a lot of people, since I like shaving my parts of my hair off and I'm a tomboy at heart. But no, I'm not gay. It never fails to make me angry, though for more reasons than it would have years ago. These kids were more than likely basing this assumption on the fact that my hair is so short, without ever considering why my hair is short. It's an awful stereotype.
I've always had an interesting relationship with my hair. When I was a Freshman in high school, I decided I was bored with my current hair style and wanted something more daring. On a whim I cut my extremely thick, shoulder-length hair into a very short pixie. It was different, it was easy to manage, and I loved it. I kept it for the next 5 years.
Then I hit my 20s, and I realized I needed a change again. So I decided to grow my hair out. It was a pain, and it involved a lot of patience, headbands, and bobby pins, but I did it and I really loved having long hair again. The options were endless. Bun? Ponytail? Curly or straight? I could now do whatever I wanted.
But then a new problem arose. My new long and thick hair knotted quite easily. I didn't have the strength in my arms to brush out the knots. Sometimes I couldn't even lift my arms up above my head. That meant asking my mother to brush my hair for me every night after I showered. But then I needed to make sure that it didn't knot again in my sleep, which meant asking my sister to braid it (when Mom and I tried, our braids were an awkward mess because of our lack of dexterity).
I was beginning to get really frustrated. I had waited two years to grow my hair out again. I was supposed to be able to use hair dryers and flat irons (nope, too heavy, at least sometimes) without issue.
I realized I had a battle on my hands: my hair versus my freedom/dignity. Maybe that sounds really dramatic, but bear with me here. For many women, hair is a symbol of beauty and confidence. And here I was, with little confidence in my ability to take care of the messy mop on my head. Which in turn toyed with my self esteem. I didn't feel beautiful anymore because I couldn't even do the simplest of tasks. The hair had to go.
The trip to the hair salon was a bit somber. Mom came with me, and when we pulled up to the building I seriously thought about calling it off and going home. But I knew I had to do it. I had picked out a really cool cut, so at least I had something to look forward to.
And so they chopped it all off. I was back to pixie short. I've since gone even shorter, though I'm due for a haircut as of the writing of this post. I miss the length, but now I have something I can manage on my own. I just wish that I could have cut it just because I wanted to, not out of necessity.
This is one of the reasons why I have a problem with these kids. They'd never make fun of a chemo patient with no hair. At least, I hope they wouldn't. But many women out there are forced to chop off their hair because of illness, and they are forced to deal with being insulted by ignorant people on top of dealing with their own emotional insecurities. It's not fair to them at all. I'm used to this sort of behavior from having short hair most of my adult life, but let's try to help those other women out, okay? If you're one of those people making comments, it won't kill you to keep your mouth shut.
Sunday, October 6, 2013
Stressed
We all have had that week. That week when nothing seems to be going right. I'm convinced that we all take turns having it, and mine just happened to be this past one. Why, you ask?
10 page paper. History presentation. Poetry assignments for my portfolio. 1,000 pages of reading (okay, maybe just 100, but it was written in Middle English which makes it feel like 1,000). 30 hour work week. Incompetent people. Sleepless nights. You get the point.
Stress isn't healthy for anyone, and I don't need a medical degree to tell you that. It takes a bigger toll on our bodies than we think. Before getting diagnosed, I ignored my body's warning signs all the time. I would just keep going and going and going until eventually I needed to spend an entire Saturday sleeping to recuperate, or until I got so sick that I was forced to stay in bed. I needed to be Superwoman. I can't do that anymore for a variety of reasons. For one, any type of stress will trigger a painful flareup. It's harder to get stuff done under pressure when you're finding it difficult to move comfortably. But then there's the fatigue, the chest pains, the swollen ankles, and a variety of other not so healthy symptoms. When I'm stressed I also tend to reach for sugar and carbs, both of which trigger inflammation (and weight gain).
Take my advice. Whether you have an autoimmune disease or not, slow down. Don't feel guilty about sitting in front of the TV watching the Home Shopping Network for 3 hours. Or for giving yourself an entire homework-free weekend just to catch up on some crafting (I confess to doing both, with the exception of this blog post).
If having RA has taught me anything, it's that I need to take advantage of "me" time, build my strength up, and just enjoy doing the things I love with the people I love. Life is too short to be stressed out all of the time, and we all absolutely take life for granted. There's always that chance that 20 years from now I won't have use of my hands, or I'll be in a wheelchair. It sucks, but that's my reality. So if I feel like going for a walk or taking an online crafting class instead of going the extra mile with my school work, you can bet I'm going to ignore the homework.
10 page paper. History presentation. Poetry assignments for my portfolio. 1,000 pages of reading (okay, maybe just 100, but it was written in Middle English which makes it feel like 1,000). 30 hour work week. Incompetent people. Sleepless nights. You get the point.
Stress isn't healthy for anyone, and I don't need a medical degree to tell you that. It takes a bigger toll on our bodies than we think. Before getting diagnosed, I ignored my body's warning signs all the time. I would just keep going and going and going until eventually I needed to spend an entire Saturday sleeping to recuperate, or until I got so sick that I was forced to stay in bed. I needed to be Superwoman. I can't do that anymore for a variety of reasons. For one, any type of stress will trigger a painful flareup. It's harder to get stuff done under pressure when you're finding it difficult to move comfortably. But then there's the fatigue, the chest pains, the swollen ankles, and a variety of other not so healthy symptoms. When I'm stressed I also tend to reach for sugar and carbs, both of which trigger inflammation (and weight gain).
Take my advice. Whether you have an autoimmune disease or not, slow down. Don't feel guilty about sitting in front of the TV watching the Home Shopping Network for 3 hours. Or for giving yourself an entire homework-free weekend just to catch up on some crafting (I confess to doing both, with the exception of this blog post).
If having RA has taught me anything, it's that I need to take advantage of "me" time, build my strength up, and just enjoy doing the things I love with the people I love. Life is too short to be stressed out all of the time, and we all absolutely take life for granted. There's always that chance that 20 years from now I won't have use of my hands, or I'll be in a wheelchair. It sucks, but that's my reality. So if I feel like going for a walk or taking an online crafting class instead of going the extra mile with my school work, you can bet I'm going to ignore the homework.
Monday, September 30, 2013
My Light Rail Dilemma
Every morning I have to take the Light Rail from Penn Station to get to school, and every morning I need to buy tickets for it. But first I need to stop and get myself coffee so that I can stay awake for class. So I go to Dunkin Donuts, grab breakfast and coffee, then proceed down the steps to purchase my tickets.
I buy two tickets at a time so that I have another one ready for the return trip. I use money that I take out each morning from my coin jar. I take that $1.40 in coins and stick them in the front right pocket of my jeans. Anyone who knows me knows that I hate digging around in my bag for my wallet, so I keep that money ready for a quick transaction.
I get to the machine, coffee in hand, and start tapping on the touch screen. Easy enough. But here's the hard part: I now need to get that $1.40 in coins out of my pocket and into the machine. You're probably wondering why I'm making a big deal out of something so simple, right?
Here's how this tends to go. I can easily pull the money out of my pocket. Now I have $1.40 in coins sitting in the palm of my hand. However, I don't have the dexterity to move the coins in such a way that I can accurately get them into the coin slot. So now I need to decide whether or not I want to take the risk of dropping all of the coins on the floor by trying to do this one-handed and fling the coins into the slot, or if I want to try to balance my coffee in between my arm and body to try and make use of both hands. You might be thinking, "Hey stupid, just put the coffee on the floor." I agree that sounds logical, but you're talking to someone that has a vendetta against all germ-y things. And let's face it, train stations and the like are germ-y places.
On especially stiff mornings, I don't attempt the one-handed technique. Instead I will use my right hand to grab the coins, place them in the palm of my left hand, and pick each coin up one by one.
And don't even get me started about what I have to do when dollar bills are involved in this process.
I envy all of you out there who don't need to put any thought into this. The movement just feels too awkward for me. I'm thinking that maybe I need to start buying enough tickets on Monday to last for the entire week, but then I also have to worry about not losing them. Maybe I need some hand yoga. That exists, right?
I buy two tickets at a time so that I have another one ready for the return trip. I use money that I take out each morning from my coin jar. I take that $1.40 in coins and stick them in the front right pocket of my jeans. Anyone who knows me knows that I hate digging around in my bag for my wallet, so I keep that money ready for a quick transaction.
I get to the machine, coffee in hand, and start tapping on the touch screen. Easy enough. But here's the hard part: I now need to get that $1.40 in coins out of my pocket and into the machine. You're probably wondering why I'm making a big deal out of something so simple, right?
Here's how this tends to go. I can easily pull the money out of my pocket. Now I have $1.40 in coins sitting in the palm of my hand. However, I don't have the dexterity to move the coins in such a way that I can accurately get them into the coin slot. So now I need to decide whether or not I want to take the risk of dropping all of the coins on the floor by trying to do this one-handed and fling the coins into the slot, or if I want to try to balance my coffee in between my arm and body to try and make use of both hands. You might be thinking, "Hey stupid, just put the coffee on the floor." I agree that sounds logical, but you're talking to someone that has a vendetta against all germ-y things. And let's face it, train stations and the like are germ-y places.
On especially stiff mornings, I don't attempt the one-handed technique. Instead I will use my right hand to grab the coins, place them in the palm of my left hand, and pick each coin up one by one.
And don't even get me started about what I have to do when dollar bills are involved in this process.
I envy all of you out there who don't need to put any thought into this. The movement just feels too awkward for me. I'm thinking that maybe I need to start buying enough tickets on Monday to last for the entire week, but then I also have to worry about not losing them. Maybe I need some hand yoga. That exists, right?
Friday, September 27, 2013
Yoga No-Go
Yoga is supposedly good for RA sufferers. That's what all of the RA forums, and my weekly WebMD newsletter, told me anyway. "Do yoga, stretch out those joints!" they said, albeit more eloquently. Supposedly I'd feel more relaxed, which would cut down the pain and make me more flexible.
As someone who favors holistic healing over conventional medicine, I try to look for more natural modes of healing myself, though that doesn't mean that I'd ever just stop taking my medication. I had done yoga as a preteen, and I remember enjoying it. I've continued the meditation aspect ever since, but not the "workout" portion. Anyway, the one yoga instructional video that I did own was on VHS. Yeah, that didn't help the cause. Hey, at least I owned a yoga mat.
I did what I thought would be a quick search on amazon. As of the writing of this post, there were 8,055 hits for "Yoga DVD." This was proving difficult. Still, knowing that I am too poor to afford classes, I persevered. My mother knew I was on a yoga quest too, and the other day she came home from Walmart with a yoga block and DVD in hand. Yes! This could work.
And so I popped the DVD into my computer. I sat down on the mat and waited for relaxation and feel-good stretching to start. There was no feel-good stretching.
Instead, I found myself struggling over the most simple positions. I realized that sitting with my legs crossed is an almost impossible task. My knees definitely did not want to bend that way. Switching from a seated position to a standing one, then back down to a kneeling one? Ha. I can only imagine what I would have looked like to a spectator. I'm so glad I picked a time when the house was empty to try this. I found myself constantly pausing the video just so I had enough time to pull myself up into a new pose. I was more out of breath from getting into poses than holding the pose! On the bright side, I guess I got a workout regardless of my flexibility fail. By the end of the 20 minute DVD, that yoga block was being used as a chair.
I think it's going to take awhile before yoga actually becomes relaxing, or before I receive any sort of health benefit from it. I found myself too worried about getting into decent poses without breaking something to actually reap any benefits. I also made the scary realization that my body doesn't move like it used to. The last thing I want to lose is my mobility, which probably means accepting the fact that my joints creak with every Downward Dog and just trudging along regardless.
I could also put pride aside and buy a "Yoga for Arthritis" DVD and roll with the old ladies. On second thought...nah. It probably wouldn't be as hilarious.
As someone who favors holistic healing over conventional medicine, I try to look for more natural modes of healing myself, though that doesn't mean that I'd ever just stop taking my medication. I had done yoga as a preteen, and I remember enjoying it. I've continued the meditation aspect ever since, but not the "workout" portion. Anyway, the one yoga instructional video that I did own was on VHS. Yeah, that didn't help the cause. Hey, at least I owned a yoga mat.
I did what I thought would be a quick search on amazon. As of the writing of this post, there were 8,055 hits for "Yoga DVD." This was proving difficult. Still, knowing that I am too poor to afford classes, I persevered. My mother knew I was on a yoga quest too, and the other day she came home from Walmart with a yoga block and DVD in hand. Yes! This could work.
And so I popped the DVD into my computer. I sat down on the mat and waited for relaxation and feel-good stretching to start. There was no feel-good stretching.
Instead, I found myself struggling over the most simple positions. I realized that sitting with my legs crossed is an almost impossible task. My knees definitely did not want to bend that way. Switching from a seated position to a standing one, then back down to a kneeling one? Ha. I can only imagine what I would have looked like to a spectator. I'm so glad I picked a time when the house was empty to try this. I found myself constantly pausing the video just so I had enough time to pull myself up into a new pose. I was more out of breath from getting into poses than holding the pose! On the bright side, I guess I got a workout regardless of my flexibility fail. By the end of the 20 minute DVD, that yoga block was being used as a chair.
I think it's going to take awhile before yoga actually becomes relaxing, or before I receive any sort of health benefit from it. I found myself too worried about getting into decent poses without breaking something to actually reap any benefits. I also made the scary realization that my body doesn't move like it used to. The last thing I want to lose is my mobility, which probably means accepting the fact that my joints creak with every Downward Dog and just trudging along regardless.
I could also put pride aside and buy a "Yoga for Arthritis" DVD and roll with the old ladies. On second thought...nah. It probably wouldn't be as hilarious.
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.
Wednesday, September 18, 2013
Exam Panic
Exams are a necessary evil for students. We all need to take them, and we know to expect them. How we handle them varies from person to person. Some will choose not to study and won't sweat the material. Others will study vigorously until they feel confident in the material. Then there's a select few that fall into the "let's panic about everything" category. I include myself in the panic category, but for different reasons than most people think. For me it has become so much more than just studying and passing a test.
The panic starts the second an exam is announced, with my inner monologue sounding something like this:
Is it going to be multiple choice? I hope it is. Please tell me it is. Oh God, what if we have to write an essay? Shit, what if the entire exam is an essay? Or multiple essays? Oh no, the Blue Books! She said Blue Books! I'm screwed. What if the weather is bad that day and I wind up flaring? Maybe I'll get lucky and it'll snow ten feet and Rutgers will deem it necessary to close the campus...
Since being diagnosed, exams have become more of an endurance test for me than anything else. First, there's the studying part. Chronic pain lessens my ability to focus. I once forgot how to spell my name during an exam, which was a pretty low moment for me. Even while studying, there are moments when my mind wanders to the sharp pain in my wrist, or my stiff neck, or the fact that I can't breathe because my immune system decided to attack my lungs right at that moment.
Then there's the night before the test, and try as I might to be asleep by 11pm, my immune system says, "Nope, time to toss and turn and be uncomfortable until 2 am." So then I start cursing at it, and shift around so much that the dog gets annoyed with me and goes in search of a more peaceful bed.
On the day of the test I'm cranky and exhausted. But the bigger problem is the fact that it's raining outside and my fingers keep locking up as a result. I can't give you a scientific reason as to why this happens (people tell me it's about barometric pressure) but rain heightens the pain. So now I need to start praying that my special pen designed for clumsy arthritic hands won't run out of ink because I'd never be able to write with a regular pen on a rainy day. Some days I get lucky and I can use a regular pen, but only for a short while.
And finally, I get to the test. It's a test that requires three hours of constant writing. So I'm hunched over the paper, kink in my neck, hips locking up because I don't have the opportunity to get up and move around. More wandering thoughts.
I do feel sorry for myself sometimes. It happens to all of us. Then I realize that it could be a lot worse, that I should suck it up and be grateful that I'm in school in the first place. Besides, it's a much more rewarding feeling when that exam comes back with a good grade, because I know how much blood, sweat and tears literally went into it.
The panic starts the second an exam is announced, with my inner monologue sounding something like this:
Is it going to be multiple choice? I hope it is. Please tell me it is. Oh God, what if we have to write an essay? Shit, what if the entire exam is an essay? Or multiple essays? Oh no, the Blue Books! She said Blue Books! I'm screwed. What if the weather is bad that day and I wind up flaring? Maybe I'll get lucky and it'll snow ten feet and Rutgers will deem it necessary to close the campus...
Since being diagnosed, exams have become more of an endurance test for me than anything else. First, there's the studying part. Chronic pain lessens my ability to focus. I once forgot how to spell my name during an exam, which was a pretty low moment for me. Even while studying, there are moments when my mind wanders to the sharp pain in my wrist, or my stiff neck, or the fact that I can't breathe because my immune system decided to attack my lungs right at that moment.
Then there's the night before the test, and try as I might to be asleep by 11pm, my immune system says, "Nope, time to toss and turn and be uncomfortable until 2 am." So then I start cursing at it, and shift around so much that the dog gets annoyed with me and goes in search of a more peaceful bed.
On the day of the test I'm cranky and exhausted. But the bigger problem is the fact that it's raining outside and my fingers keep locking up as a result. I can't give you a scientific reason as to why this happens (people tell me it's about barometric pressure) but rain heightens the pain. So now I need to start praying that my special pen designed for clumsy arthritic hands won't run out of ink because I'd never be able to write with a regular pen on a rainy day. Some days I get lucky and I can use a regular pen, but only for a short while.
And finally, I get to the test. It's a test that requires three hours of constant writing. So I'm hunched over the paper, kink in my neck, hips locking up because I don't have the opportunity to get up and move around. More wandering thoughts.
I do feel sorry for myself sometimes. It happens to all of us. Then I realize that it could be a lot worse, that I should suck it up and be grateful that I'm in school in the first place. Besides, it's a much more rewarding feeling when that exam comes back with a good grade, because I know how much blood, sweat and tears literally went into it.
Monday, September 16, 2013
Battling the Invisible
I want you to think back to your commute this morning. Perhaps you drove. Let's pretend that you took the train though. Maybe this train was really crowded. You were lucky enough to get a seat, but quite a few people needed to stand. You look across from you. There's a young guy standing there, let's say in his mid twenties. He looks strong and healthy. Maybe he looks like he could be an athlete. If this young, athletic guy came up to you and asked you to give up your seat so he could sit down, would you? Honestly?
Sorry, but you probably wouldn't. I'm not judging your character because I think that's everyone's natural reaction. Why does this healthy looking kid need a seat? Surely he can suck it up and stand for an 8-minute train ride.
But maybe this guy has RA. You can't see the effects of the disease because he's too young to show any major deformities. While he seems to be okay, he's really not. In actuality, every joint in his body is swollen and hurting. The pain in his back and feet is unbearable. Maybe he needed to walk 5 minutes to the train station, leaving him extremely fatigued. Believe it or not, sometimes a 5 minute walk is enough to keep a person with RA bedridden the next day.
I'm not saying that this is always the case. RA, or any autoimmune disease for that matter, affects everyone differently. It depends on whether a person is in remission (no disease activity) or flaring (a period of intense disease activity that can last any amount of time). Some days I choose to stand on the train because I feel well enough to. However, on the days that I'm flaring standing in any form is unbearable. Either way, I would never go up to someone and ask for a seat. There's too much stigma involved.
RA is an invisible illness. Sometimes I wish it wasn't. I get accused of "faking it" more often than I should, and I know I'm not the only one. I hear the nasty comments people make at the supermarket when a "healthy" person parks in a handicapped spot. I don't understand why it even matters to those people, because most of the time they aren't parked in a handicap spot or have handicap plates.
This is a long-winded way of stating the obvious. My point is that the next time you find yourself observing someone, remember that there's always something deeper than what you see at face value.
Sorry, but you probably wouldn't. I'm not judging your character because I think that's everyone's natural reaction. Why does this healthy looking kid need a seat? Surely he can suck it up and stand for an 8-minute train ride.
But maybe this guy has RA. You can't see the effects of the disease because he's too young to show any major deformities. While he seems to be okay, he's really not. In actuality, every joint in his body is swollen and hurting. The pain in his back and feet is unbearable. Maybe he needed to walk 5 minutes to the train station, leaving him extremely fatigued. Believe it or not, sometimes a 5 minute walk is enough to keep a person with RA bedridden the next day.
I'm not saying that this is always the case. RA, or any autoimmune disease for that matter, affects everyone differently. It depends on whether a person is in remission (no disease activity) or flaring (a period of intense disease activity that can last any amount of time). Some days I choose to stand on the train because I feel well enough to. However, on the days that I'm flaring standing in any form is unbearable. Either way, I would never go up to someone and ask for a seat. There's too much stigma involved.
RA is an invisible illness. Sometimes I wish it wasn't. I get accused of "faking it" more often than I should, and I know I'm not the only one. I hear the nasty comments people make at the supermarket when a "healthy" person parks in a handicapped spot. I don't understand why it even matters to those people, because most of the time they aren't parked in a handicap spot or have handicap plates.
This is a long-winded way of stating the obvious. My point is that the next time you find yourself observing someone, remember that there's always something deeper than what you see at face value.
Sunday, September 15, 2013
Why I'm Here
Adults often joke about how younger people think they're invincible, how we live with the impression that nothing can hurt us because we're young and able-bodied. Sometimes we're guilty of being procrastinators. We put things off because we think, “Oh, I'm young. I don't have to start worrying about ___ until I'm 50.” I had that mentality for a long time too.
Then I got diagnosed with an autoimmune disease.
It was 3 years ago. I was 19 years old and sitting in pain in a rheumatologist's waiting room. I was the youngest patient there by at least 40 years, and the other patients were making me anxious with comments like, “But you're just a baby.”
“This doctor better find something wrong. If he brushes me off like the last quack, I'm gonna punch him.” I muttered to my mother, who was sitting next to me flipping through a magazine. Pain tends to make me cranky.
“Relax, just listen to what he has to say.”
I sat in silence, praying that this guy would finally figure out what illness had been plaguing me for the past 4 years of my life.
Finally it was my turn to see the doctor. After greeting me, he scanned my blood test results. “A normal person's inflammation levels are usually at a 5,” he said. “Yours are 13.6. No wonder you're in so much pain.” I handed him the x-rays that he asked me to go get after my first visit two weeks prior. He examined them quietly, then took my hands to feel the joints in my fingers and wrists.
He looked up at me then, and with a smile said,“Congratulations, you have Rheumatoid Arthritis. You and I are going to become best friends.”
It was a bittersweet moment. On the one hand, I now had an explanation for why I could sleep 20 hours a day ever day and still be tired, and why I could no longer type or climb stairs. That was a relief.
But now I had an incurable autoimmune disease to battle, one that would only get worse with age. Without getting too technical, having Rheumatoid Arthritis (RA for short) means that my immune system is attacking my body instead of germs and viruses. While my entire body is affected, most of the damage happens in my joints. 1% of the U.S. Population has this disease, and they think that it's a combination of genetic predisposition and environmental factors that trigger it. Don't worry, it's not contagious.
Basically, not a day goes by that I'm not in some sort of pain. When I get sick, it's usually pretty bad, since my body can't fight the infection. And someday (hopefully not anytime soon) I'll start seeing physical deformities. You can look up photos online if you want. I don't because they just spur a panic attack.
My entire life has changed since my diagnosis. I see the world differently now. I find humor in the smallest things. And I blog about it because, you know, I might go insane otherwise.
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