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.
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