Monday, November 5, 2012

Lana: the Soulcrusher.

So, I ultrafailed at posting yesterday, but I’d at least like the opportunity to explain and to admit something that really scares me.

I have ridiculously high expectations of the people I love and care about, and while typically this is a good thing (think: encouraging them to be better people), it can sometimes turn into a bad thing. Yesterday was one of those times.

My lovely boyfriend and I both had the day off yesterday, which hasn’t happened in a while (without one of us taking the day off, that is). We didn’t really do much, though... we both just sort of sat around, did laundry, and so on. If you know me, you know that I don’t particularly like these types of days as I’m the busybody who loves to be doing things all the time. But I thought it might be a nice break. However, by about 5-6 pm, it was starting to get on my nerves. The fact that a) I didn’t accomplish anything productive (aside from laundry), and b) I didn’t really have much fun (because in my mind if you’re not being productive, you SHOULD be doing something you’re really enjoying!) was eating me up. But I tried, for the sake of the lovely and the dog, to not let that show.

Well, it was about 15-30 minutes before my little man (dog) was supposed to have dinner. I let him outside to pee about 30 minutes prior, thinking that an hour after he pees, he could eat, and then go outside to pee/poop. This is nothing unusual. However, about 30 minutes after his potty break, he kept going to the back door and looking at me. Now, this is how I prefer him to signal to pee, so he knows he’ll get to go outside if he stands over there. But I just had him out, and so I told him, “You don’t have to pee yet.” (First mistake.) He came over to the couch, chewed on toys, etc, and about five minutes later headed back to the door. “You don’t have to pee! You were just out.” (Second mistake.) See, I thought he was just playing me. Since he knows that the door = going outside, I thought he wanted to go out just to have a sniff. With me hungry/tired/and not really feeling an ultra-cold trip outside, I kept telling him he didn’t have to go yet (third mistake, repeat of mistake #1). Finally, he peed on the floor. I was mad. He’s four months old, and has been housetrained since about two months. He has the *occasional* accident, especially when we’re gone for hours and he can’t hold it, but he most certainly knows that he needs to pee outside. So, I took him by the collar, put his nose by the pee, gave him a quick swat on the butt (not hard! so relax!), and said, “Bad dog, Tucker! No! You are a bad, bad dog. Good dogs don’t pee in the house!” Then, I got his leash on and took him outside, where he proceeded to be not once, not twice, but three more times. He really had to go.

The guilt set in the minute I did it.

After we got inside, I put him in his crate for his own good - so he didn’t get into the pee while I cleaned it up. I told him it was only for a minute. When I opened the door, he wouldn’t come out of the crate. (The guilt was building.) I tried to coax him, offered him toys, and eventually he only came out because it was dinner time. After dinner he hid behind me and curled up in a tiny ball. When I got the leash and asked if he wanted to go pee and poop, he ran the opposite direction.

I terrorized my dog.

He was so sad and emotionally distraught. He was crying (real tears!) and was very, very subdued (even moreso than usual). I felt disgusted with myself on two accounts: first, because I didn’t take him outside when he wanted to go, and second: for yelling at him to that degree.

I love my dog so much, and the last thing I want to do is upset him. In my mind, I was yelling for the right reason - to prevent him from making that mistake in the future. Yes, I know my dog can hold his pee for more than 40 minutes. But don’t you and I, as humans, pee more some days than others? No one can be on THAT tight a schedule, and I failed to recognize that he might require an extra break. He hasn’t had an accident in the house in weeks, and I am so proud of him for that - but all he saw was the negativity I expressed over one (small) peeing indicator of “Hey, I need to go outside NOW.”

It’s still weighing on my mind today. He was upset all night last night, and went to sleep upset. This morning, thank goodness, he was back to his normal self.

But this made me think of something much more personal. Do I, as a person, let my own high expectations get in the way of expressing when I am happy with someone? I’ve been trying to show a lot of positive reinforcement with my boyfriend lately, especially by telling him how happy I am to be with him, and so on. We celebrated four months yesterday. :)

At the same time, I sort of feel like, despite me trying to express when things make me happy/proud/excited, it’s often that I express my negative feelings in a much much more visible way. I either become silent, or I express myself sarcastically, or loudly, or both. I feel sometimes like I’m turning into my parents, who never really “congratulated” me or showed much positive reinforcement for my good grades in school, but if I got anything lower than a B, they would react negatively and ask why I wasn’t getting A’s anymore.

Looking back, that really hurt me, and that’s part of the reason (at least academically) I’m a perfectionist today. My writing, though not always flawless, is always of a superior level. My math and science work follow suit. Even the work I do at work is of excellent quality - and I’m often asked to check over things that others do, so that I can find and fix mistakes.

While I’m using this in a positive way, I don’t think I want to be a reinforcer of this mindset. I DO have really, really high expectations for the people in my life that mean the most to me, my dog included. However, is that coming across if I flip out over a little thing like pee?

This is not to say I’d like a “no discipline” approach - that can be just as detrimental. But I really need to work on finding my happy medium. I’m not sure if I’ve ever had one, but I need to find one now more than ever. Because the happy, encouraging Lana is a really cool, fantastic person to be around. The Soulcrushing Lana, however, is not. And quite frankly, she’s taking over a bit too much of the time.

For the next week, at least, I’m going to try to present things in the most positive ways possible. This does NOT mean I’m going to be happy about everything, because that’s impossible. However, I will take the extra effort to think about reactions before I take action. I will more actively try to consider the feelings of others before I do something rash that could be handled differently.

Because no puppy deserves to go to bed crying.

Saturday, November 3, 2012

What I'd tell myself now

Since I've graduated college, I've had a lot of time to think about what the hell my life has been like for the past eight years. I'm actually really pleased with my high school and college experiences, but here's what I'd tell myself at 14 (just starting high school).

Dear 14 year old Lana,

Congrats! You made it out of eighth grade alive! The next few years are going to be integral to the rest of your life. So, take them seriously (you will), but not too seriously (you might). Lighten up! There's more to life than just studying. Make sure you make time for your friends and family.

Parts of high school are going to be great. You'll finally be challenged in your classes, which will be a big change from elementary school! Make sure to keep your head up, and don't be too hard on yourself when you don't get straight A's (you won't). Just keep doing your best (you will) and you'll be fine.

The kids you meet in high school will be pretty awesome. For the most part. There will be a significant portion of the school you may not want to interact with - but try. Some of them are very worthwhile people.

Don't be too frustrated with boys in high school. The fact that you haven't been kissed yet (at 14) is really not that big of a deal. It'll happen, and when it does, it'll be great. Don't get too upset at your first break up - it happens. Learn from it. Analyze what happened, what could have been better, and what was already good. Use that to guide your next relationship.

Even though you attend a Catholic school, don't let religion get the better of you. Eventually, you'll figure out a better way to live (non-religiously). Don't put too much stock in "eternal life." Try to be the best person you can - be loving, caring, and continue to nurture your desire to help others. Stay true to this ideal - it will be the guiding force in your life.

When you apply to colleges, pick one that's in the area, but not so close that you will have to live at home. It'll be healthy for both you and your parents if you move out; however, you can continue to build a strong relationship with your younger brother if you stay close enough so that you can see him regularly. Remember, he's about to be going through what you've gone through. Be there for him and lead by example - but be open to the idea that there ARE other ways, and encourage him to find his own way. He's a very talented guy.

When you start college, pick a major you love. However, DO NOT be afraid to change it! Experiencing something is always confirmational, but acknowledge the fact that it can be confirmed in the negative - as in, "I do NOT want to do that!" If you do decide to change your major in college, let it be your own choice (not your parents' choice or your friends' choice). Choose what really makes YOU happy, and keep in mind that it is your duty when you graduate college to find a job and support yourself. It's not Mom and Dad's job to support you indefinitely.

Once you get to college, don't be afraid to get out there and live a little. You'll be very focused on your studies, and eventually will encounter some financial issues. This will take a LOT of time, patience, and persistence to deal with, but don't give up. You'll make the right choice. Remember, however, that part of the fun of being in college is that you'll get to meet lots of new people and experience new things. So don't be afraid to go out to a party, or to introduce yourself to your new classmates or folks at the library. You meet the most interesting people that way.

Boys will be another story during college. You probably won't find anything too important until your senior year, so take some time to have fun (and be safe, of course!). You don't have to marry the first guy you date in college (thank goodness!), and as long as you're clear with how you want the relationship to go, get involved as much (or as little) as you desire. Remember NOT to commit to someone more than they're willing to commit to you. You love helping people, but keep this in check. You have a tendency to always put others' wants and needs before your own, but don't let this be a downfall at any point during college. Don't be afraid to walk away from a relationship when it turns into something with which you're unhappy.

Lastly, in college, build your connections wisely. Remember that you don't have to work in a field that's directly derived from your college major. You're creative, you'll figure it out. :)

Most of all, keep doing what you're doing, because looking back from age 22, your life is going to be pretty damn amazing. So brace yourself, honey, cause you're in for a wild ride.


Your present-day self.

Friday, November 2, 2012

Being thankful

As November begins, I’m reminded of the impending holiday: Thanksgiving. Thanksgiving for me is kind of a tongue in cheek holiday. Growing up, I always spent Thanksgiving with my “mom’s side” of the family: my grandma and grandpa, uncle, and mom’s cousin. It was always a semi-fun holiday, but aside from eating food that I only ever have once a year (turkey, cranberries, homemade stuffing, pumpkin pie, amongst others), I didn’t really see the point. Couldn’t we gather the family on any day to do this? Why did it have to be the fourth Thursday of November?

Now that I’m older (ha ha), I’ve gained a more insightful appreciation for Thanksgiving. There are so many times when I’m feeling down about x y or z in my life that I don’t take time to think about what I’m thankful for - the things that make me happy. I know that sounds cliche, and nearly everyone says that this time of year, but for me it’s especially true. As I just spent the entire month of September being pissed off, I should know. Luckily (and with some help), I managed to turn my mindset around and finally take into account the things that are keeping me going right now.

After graduating in May (yay!), I spent most of the summer enjoying finally being a “real person” (aka, having a full time job, where I can come home in the evenings, veg out in front of television, and so on). In September, as everyone was headed back to school I felt... relieved. And upset. I wanted to go back to school, too! But I couldn’t, because a) I didn’t have enough money and b) I couldn’t afford to take out any more loans (see reason A). I tried not to let this bother me too much, but darnit, there are OTHER PEOPLE OUT THERE that got to go back to school!

I didn’t take into account that, upon graduation, I had a full time job offered to me, with insurance benefits and the potential (and probability) of getting a raise within the first 6-8 months or so. A job that, while nearly necessitating I relocate, allowed me to move out of Rogers Park and into a nice neighborhood in Chicago. An area I love, and have come to be very thankful for. Also, the fact that I’m working for a successful startup means that I’m working with fantastically innovative people, and every day I get to create valuable things that not only help our company succeed, but also provide solid internet resources available to students everywhere - for free! It’s not exactly how I envisioned my life in education, but it’s definitely better than some of my alternative options. Not to mention, this company feeds me breakfast and lunch (fo free!), and it’s a 10 minute walk from my house. They also allow me to “work” 9 hour days, taking an hour off in the middle of the day to go home and let my dog out. I’m not sure that ANY OTHER company would let me do that. I’m really, really thankful for the company that employs me.

In September, I had the financial means (and willpower, and promised help) to finally adopt a dog. I say adopt because, although I did pay real money for him and didn’t save him from a cruel home, having a dog is (semi sorta) like having a child. It takes an insane amount of commitment and patience... and is so worth it! I love my little man like crazy. He’s (relatively) good - he was a great puppy, and even now that he’s entered into his mischievous stage, he’s still a really good dog. Nothing beats having him curl up on my lap and snuggle with me after a long day. I’m so thankful that I was finally able to make a dog a part of my life.

I’m also thankful for my family - they’ve had my back in a really big way the past several months. When I went through some crazy chaos in June/July, my moving expenses (rent, security deposit, etc) suddenly doubled. My mom was ON IT. She loaned me the money I needed to make the transition without a hitch. She also is allowing me to pay her back the money as I can - though I’m doing my best to keep that monthly. I’m also really thankful for my dad, brother, uncle, and boyfriend, all of whom helped me move in ONE DAY, at the last minute (!!) and things went flawlessly. Though I was crazy sore for the following few days (never again will I live on the third story anything!), I really appreciated the time and effort they put into making my move as successful and smooth as it was.

Lastly, and right now most importantly, I am so very very thankful for my boyfriend. I met this amazing man while I was dating someone else - when things didn’t work out there, I finally gave “us” a chance. It has definitely not all been rainbows and sunshine - we went through a rough patch and came out of it for the better. I’m really thankful for the communication and trust levels we’ve built up that allow us to work through our problems without beginning World War III. We’re learning how to share responsibilities to improve both of our lives. He’s helping and encouraging me to be a better person, and I hope the same is true of me for him. He’s an amazing support when I’m upset, in pain, or just going through some shit that I don’t want to deal with on my own. He’s also great with my dog - he’s been to every vet visit with us, and definitely shares in the responsibility of pee/poop breaks, walks, cleaning up, and the like. He’s thoughtful and truly has my best interests at heart. I’m so excited to and thankful that I get to experience more of my life with him.

Well, that’s what I’m thankful for this Thanksgiving season. But this year, I’m making myself a promise that I fully intend to keep. It’s great to think about this now, in the month of November. But I’m going to KEEP this in mind throughout the year, to remind myself that I am happy - and why! Hopefully, this blog, amongst other things, will keep that on my mind.

What are you thankful for?

Thursday, November 1, 2012

Why I'm Inked

If you know me, you know I’m not normal. Not in the strange, she should be locked up for her own protection, not normal. But I’m atypical. I’ve been described this way since...oh, pretty much birth. Well, I was reminded yet again not too long ago about how “not normal” I am. I got my tongue pierced at the beginning of October, after some pretty serious emotional issues between my love and me, and my mother found out about it a week or two later. And she said “Why can’t you just be like a normal person? Why do you have to go and stick metal in you and inject ink into your skin?!”

Well, the piercing thing I didn’t mind too much, because, although several of my piercings mean “something” to me, several of them are just, “Hey this looks good, and I want it.” Like my tongue. Sort of. I have to be in the right state to go get something pierced, so there’s that aspect of it, but piercings are sort of hit and miss with me.

Tattoos, however, are not. I am proud to say that I have seven tattoos, and am awaiting an eighth. Each of them has a very special meaning and represents a really important part of my life. Really quickly, I will run through them for you, starting with the first, and ending with the most recent.

1. Butterfly on a heart, with words “gone from my life, not from my heart.” I got this tattoo when I was just 17 years old and headed off to college. When I was graduating 8th grade, both of my grandparents on my mom’s side died within six months of each other. My grandfather literally died the night of my 8th grade graduation. I was close to them, and so I got this tattoo four years later, in memory of them. It also symbolizes people that I went to school with that I would (never or rarely) see again; they were out of my life, but their memories still live on in my heart.

2. Music note (treble clef). I’ve been singing since forever, and took voice lessons for about 6.5 years. I loved every minute of it. Although I don’t sing in a choir anymore, music is part of my life on a nearly daily basis, and can often calm me down and/or cheer me up.

3. Sparrow. I got this tattoo with my friend, Amy. Its inspiration comes from the lyrics “Like two sparrows in a hurricane, trying to find their way. Life says they’ll never make it, love says they will.” Though seemingly love-song-y, this pretty much described my life up until that point. I was working and (basically, with the help of some grants and loans) putting myself through college. I depended on my friends a LOT to get me through the first year or two of college, and Amy was one of my best friends when I started college. She already had a year of college under her belt, so she was able to offer some great advice and to just lend an ear when I needed a listener.

4. Shakespeare quote “This above all, to thine own self be true.” When I showed my mom this tattoo, she said, “Lana, only you would be nerdy enough to get Shakespeare permanently written on your body!” Although the context of this quote is believed by most critics to be very superficial, I interpret the quote on a much deeper level. I got this tattoo half way through my education major, when a lot of people were dropping out or deciding that school wasn’t for them; I also had certain family members telling me not to pursue a career in education. I wanted to be true to myself. I love to help others, and I love teaching kids how to do new things (or reminding them how to do old things, ha ha ha). I wanted to have a constant reminder to do what I believe is best for me, and to take advice in stride, because ultimately what I do with my short life has to be my own.

5. Quote: “Love me when I’m gone.” I got this literally right after a pseudo-breakup with a guy I was not “technically” dating, but whom I totally loved. I didn’t get it because of that, though. The previous semester, I had some serious tests run and found out there’s a good chance that I might not live as long as the rest of you fuckers. ;) After realizing how short life is, even when you DO live the entire thing, I started experiencing a really heavy dose of sentimentality, and more than anything, I want to be remembered when I’m gone. In other words, I want to make a difference.

6. A big black bug bit a big black bear and the big black bear bled blood. RIP Poppy. <3

7. My atheist tattoo. This is my most recent, and possibly my favorite tattoo. I got it just above my heart, on the “front” of my left shoulder/chest. There are no words, just a universal symbol for atheism. It’s the most noticeable tattoo I have (yet), especially when I’m wearing a shirt with a more open neck. I love telling people that it stands for atheism. My atheist tendencies show that I am rooted in logic and rationality. It shows my life for science, evidence, and experimentation. It shows that I don’t believe everything I hear, and I am skeptical about a lot of things. Most of all, I like this because it can (though doesn’t as often as I’d like it to) spark a conversation between myself and other atheists. Most of the time, people who believe in a higher power either lecture me or give me a VERY disapproving look. Oi vey.

I don’t believe in getting “meaningless” tattoos - as you can see, all of mine have pretty extensive meanings behind them (even if it does just look like a bird! etc). When people come to me for advice about tattoos (yes, that actually happens!), I tell them several things: 1. make sure it means something. 2. Don’t just decide on something and go and get it done. I had an “idea” for my Poppy tattoo for about a month, and then changed my mind. I tend to say something like “think about it for six months,” or “think about it for the same amount of time it would take before you told your significant other you love them,” or something like that. (Or, think about it for the same amount of time your car can go without an oil change, or for an entire season, etc etc.) I can honestly say that I don’t regret any of my tattoos - why? Because they’re all well thought out, well done, and still hold meaning in my life. And it’s okay - not every tattoo will represent people or things that will remain that important in your life. But getting tattooed is like using your body as your scrapbook. It helps you remember people, things, ideas, and feelings that you’ve experienced. So, ink on, folks. Ink on.

Monday, October 15, 2012


I don’t think I’ve ever written down too many consecutive pieces of “my story” before -- at least, not my medical story. To know my RA, you have to know me. I typically divulge in sharing this story over years and years of time, and now I’m going to try to fit it all onto a few short pages? Hmm... we’ll see.

I suppose my story started before I was born; that’s what the doctors speculate. However, I began to be a burden around age two. One day, my mother noticed that my ankle was severely swollen. Because I was only two, and not walking around or really playing on my own yet, she was worried -- I hadn’t had any falls or accidents recently. She called my pediatrician and made an appointment to take me in to see him. He was perplexed, especially due to my young age and good record of no accidents or falls. He sent me down to be x-rayed, where I was diagnosed with a broken ankle, but not before the doctor not-so-outrightly accused my mother of child abuse. The doctor put a cast on it and told my mom to bring me back in six weeks. What likely seemed like a lifetime later (hey, I was born in 1990, the era before waterproof casts), my mom took me back to the doctor, and he pronounced me healed! No matter that my ankle was still swollen. He told my mom to give me Motrin if I was in pain, and I’d be fine.

A few days later, my left knee swelled up. My mom noticed it in the tub. She says it was the size of a softball (and I was not a huge two year old, so you can imagine how that looked). She knew there was something more going on, and that I didn’t just keep breaking joints. She took me back to the pediatrician -- lying to get me in (he wouldn’t see me for another swollen joint), and pulled up my pants so he could see my knee. He suppressed a gasp, and told my mother that I needed to see a better doctor. At least he had the decency to admit it. He told my mom to get me out of the suburbs, and into the city to see a good doctor that works out of a hospital.

I ended up at Children’s Memorial, in Lincoln Park. At first, I saw an entire team of rheumatologists. Going to Children’s was an all day affair, as the doctors were always behind. You could have a 10 am appointment and still be waiting at 2pm. That’s what specialists are like. Rheumatology and Immunology were right next to the chemo wards, which I know drove my mother crazy internally. I’ve always felt guilty that I, her firstborn, had to put her through so much shit. But she and my dad were always there every step of the way. Of course, after my first visit, they almost but not quite confirmed that I had JRA, juvenile rheumatoid arthritis. My sed rate, which measures the level of inflammation in one’s body, tested in the 90s. A normal human sed rate is in the teens or 20s. One thing stumped the doctors: I was never in any pain. I never complained, and when the doctors asked me what hurt, I’d always respond “nothing,” or reference a cut/scrape I had gotten the previous day. After countless x-rays (on which arthritis will not appear), an MRI, so so so so many blood tests, and so on, my doctors concluded that I did in fact have JRA. One of my first courses of treatment, since I was three and could not even swallow pills, was to have weekly IVs. A nurse came to my house and would prep me and sit with me for the two hours while the medicine coursed through my veins. By the age of four, all of the veins in my arms, hands, and feet had collapsed. This was after one year of treatment. Clearly, something was not working.

My rheumatologist at that point admitted that I may be a good candidate for a more invasive treatment. (My memory kicks in around the time of the IVs, but comes and goes. For instance, I remember that I got a new Disney movie every week to watch during the IV, but I couldn’t tell you which room I sat in to watch it. There are certainly holes in what I can recall.) He recommended I go see a renowned orthapedic surgeon with an office in northwest Indiana, who worked out of Children’s and was on the faculty at Northwestern. I easily got an appointment with the doctor’s referral (ha ha), and my four year old self was sitting in yet another doctor’s office, different location, but same ordeal. After some more x-rays, tests, and just feeling my joints in general, the surgeon decided that I needed an arthroscopic synovectomy on my left knee. For those that don’t speak doctor, that basically means that the tissue in my joint, instead of being flat and smooth, had balled up and was causing severe swelling in my joint. He wanted to operate as soon as possible.

I can never imagine that my parents expected this while they were planning on having children. I can’t imagine what they were thinking when they found all this out, but I never remember them crying or showing many signs of distress. I’m sure they did, but they also did a hell of a job for staying strong for their four year old little girl. They scheduled the surgery, and weeks before starting kindergarten, I had my first knee surgery.

The entire surgery team at Children’s was great. They let my mom stay with me until after I had “fallen asleep” for the surgery. They also let me keep my teddy bear with me (I’m guessing they took him off the table during the surgery, but my four year old self didn’t think so), and were right there waiting for me when I woke up. During the surgery, the doctor realized that all of that balled up tissue in my knee had actually forced my patella (kneecap) out of it’s proper place, and onto the side of my knee joint. That’s right, for all intents and purposes, it wasn’t really attached or being an active part of my leg. I’m not sure how I was able to walk or run around and play, but honestly no one had any idea -- I never complained that it hurt.

After my surgery, my doctor told my parents that if I had to have another knee surgery before age 10, I wouldn’t be able to walk. Again. Ever.

As a matter of fact, I proved him wrong on this point. I had a knee surgery every two years from age 4 to about 15 (six surgeries total, if I recall this correctly -- they sort of start to blur together after 3-4), and I can STILL walk around. There’s been hardly any indication that I won’t be able to walk “ever again” to this day.

I got ahead of myself there. After my surgery, my parents brought me home. I was on crutches (ever try teaching a 4-5 year old to use crutches?) for the first three days. After that, I started physical therapy right away. That was brutal. My therapists were honestly great, for the most part, and tried to make the process “fun” by making up silly games for me to exercise my knees and ankles. I paid close attention to everything that was going on around me. I exercised at home, with my mom (and sometimes little brother, when he was old enough). I went to therapy three times a week. Therapy was a 40-45 minute drive one way from my house, and I was there for an hour minimum. My mom made after school appointments, which meant that some nights we couldn’t eat until 7pm or later. She would bring snacks for my brother and I, though.

The next ten or so years were riddled with cycles of surgery/therapy/recovery/surgery, and many disappointments. The few times I was in “remission” only led to a more major disappointment a few weeks or months later when I could barely walk. I was teased at school by some of my classmates, but that died out before 4th or 5th grade. I excelled in school and genuinely enjoyed learning. I did have to sit out of gym class, though, and I usually read books during recess. I had a couple close friends, but otherwise kept to myself. My teachers enjoyed having me in class, because I was bright and helpful, but I don’t think they fully understood what was going on inside my body. The one year I tried to do PE, in 7th grade, I received my first “B” on my report card. Until that point, I had straight As for my entire elementary school experience. When I asked my teacher why I received a B, he said, “Well, you tried your best, but you couldn’t run, so I had to take off points and that lowered you to a B.”

I had never felt so disheartened. I was so excited to actually be able to interact with my peers in a non-academic way, and I felt ashamed once again for not being able to “do it right.” The following semester, I once again asked my doctor for a note to get me out of PE. I didn’t want to risk another B on my report card. I sort of expected comments from my peers about how I was able to walk or run (or how I wasn’t able to), but I thought my teachers would be understanding. Unfortunately, that was just the introduction to how people really handle people that differ from them.

I thought high school would allow me the chance to “start over,” so to speak. I was told that everyone in high school was more mature, and more understanding. I’m not sure who told me that, but I sincerely hope I get the chance to punch them in the face some day. I went off to high school with a really open mind, ready to share intricate details about my life, and I was met with... what’s the opposite of understanding?

I do have to say, many of my teachers in high school were more understanding. They were just more wordly in general and had experienced more of life than my elementary teachers had. The students, my peers, however, were about the same. One guy I dated in high school literally asked me if he could catch JRA by kissing me or holding my hand. (No.) What about oral sex or regular sex? (No. What do you think this is, an STD? This is an autoimmune disease.) The more I studied science, the more I was able to learn about myself and explain my situation.

The repertoire went (and still goes) something like this:

I have JRA (now just regular old RA). Arthritis is an autoimmune disease. That means that my body’s white blood cells attack my joints, instead of waiting for a virus or other sickness to come along. White blood cells normally only attack things that are NOT supposed to be in your body. Mine can’t tell the difference, unfortunately. It’s due to a DNA abnormality. No, it’s not my fault, and it’s not my parents’ fault, either. No, it’s also not genetic, so no, NO ONE ELSE has it in my family. My brain/DNA tells my body to do the wrong thing. I can’t control it, no. Realistically, no one can, or there’d be a cure. Yes, it hurts, but not all the time. And no, I can’t tell you when it will hurt and when it won’t hurt. I have good days and bad days. Why do I limp? Because unfortunately it started attacking my legs. Currently, I can identify arthritis in my right ankle, both knees, my hips, my elbows, a finger, and a toe. Some joints are worse than others, and they rarely all hurt at once. Yes, I can walk. No, I can’t (really) run. (Can you run at all? What if you were being chased by a bear?) Yes, of course if I were being chased by a bear, I would try my damnedest to outrun it. Would I succeed? I guess that would depend on the power of my adrenaline kicking in. (Will it ever go away?) I don’t know if it will ever go away. Personally, I doubt it. I think it might go into remission again, but that’s really like a sense of false hope that I don’t want to submit to, per se. I’ve needed a knee replacement since age 11, so even if “it” goes away, there will still be a lot of damage done to my body.

As far as medicine goes, I’ve been on anything and everything. I mentioned those IVs before. Those were chalked full of steroids. I’ve been on methotrexate and a butt load of NSAIDS and other medications. I’ve been taking ibuprofen on a daily basis since age 3. The only times I’ve ever missed were when I was prepping for a surgery and you can’t have your blood too thin for that. Recently, I was on a drug called Enbrel. My parents decided to put me on that when I was 14 or 15 years old. Within the last year, after having been on it for five to six years, my rheumatologist informed me that longitudinal studies have shown that will probably put me at a greater risk for cancer at some point in my life. That’s right, after five years of Enbrel killing my immune system, and literally CHANGING my DNA in hopes that it would make functional white blood cells, I find out that what I had been doing may cause me a ton of problems. After that, he gave me a medicine called sulfasalazine. I took it for about a year. Recently, I stopped taking it, and I haven’t seen a huge increase in my pain, or a huge decrease in my mobility.

Some people ask me if I’m upset that I have arthritis. I tell them that it’s easier to lie and tell people I don’t have it, that I was hit by a bus or shot as a child, and that’s why I don’t look or walk normally. I definitely have lied about it, especially to people I don’t know, and I’m usually not content with that decision. It’s taking the easy way out. If you’re still reading by this point, though, you’re aware that this is nothing easy to explain to folks. Am I upset that I have arthritis? No. Having arthritis has had a lot of positive benefits for me. Primarily, it’s made me more open-minded, and less judging of others. I hate hate HATE the “judging looks” I get from other people, and I make it a point to never give them when I’m out and about. It’s also made me “smarter,” or at least more aware of what’s going on. I knew what a PPO and a deductible was before I knew what a pokemon was. I could just as easily tell you about Sonic the Hedgehog as I could about synovial tissue. There’s something to be said for that. It opened me up to a world of learning. I suppose the part I’m upset with is the “future” part. The part that says, if and when I have kids, I might not be able to chase them around the house or yard. The part that says, because I’ve been on so many different medicines, I might not even be able to have kids. The part that says, by age 30, I might not be able to walk. The part that absolutely necessitates I have insurance at all times -- and GOOD insurance, too. I am upset with the part that makes me unattractive, the part that dictates that I’ll never have a sexy stride with which I can enter a room and capture people’s attention. I’m upset at the limited number of sex positions I can handle, because of my “inflexibility.” I’m upset with the fact that I can never just stay at a friend’s house randomly, because I know the next morning I will need my medicine, and it won’t be with me.

I could go on. But you know what? None of those things are huge issues. One great thing about growing up with JRA is that it has taught me to compromise. I can’t run, but I CAN walk. I won’t be able to chase my kids around, but I WILL marry someone who can. I might not be able to walk, but I WILL talk and contribute to the world. I might not be able to be on top, but being on the bottom IS just as good. I don’t live a perfect life, and I don’t know anyone who does.

The question I’ve been asked the most, historically, has been “Will it ever go away?”

Being that I am not a higher power, not omniscient, nor do I believe in anything that is, I can only do my best to answer, “I don’t know, but probably not.” My dad used to say “There’s a 50/50 chance it will go away - either it will or it won’t!” I like that perspective of looking for it. Any more conclusive statistics will just get my hopes up (or down), and I don’t want to do that. I’ve taken a long time to come to accept what I’ve been dealt with in life, and giving me more or less is not the answer. Finding my own way is.

Friday, October 5, 2012

I think my adult card needs to be taken away.

I am 22.

I am a college graduate with a >3.7 GPA.

I am in the process of obtaining my certification to teach grades K-9.

I can legally be held responsible for the lives of many young people.

I am a dog owner.

I should be more responsible, right?

It came to my attention the other day that I am making these huge sweeping decisions that have the potential to throw peoples' lives into complete chaos. While I suppose it could be said that I was simply looking out for myself and my dog, I realize that I've fucked over two really good people in the process. I don't have a very good track record going right now.

I wish sometimes I could just hand in my adult card to someone. I could say something like, "Here. This is too hard for me to deal with, and I don't want to hurt anyone in making these decisions. Please make them for me. Spin the wheel, roll the dice, whatever you have to do. But don't make me do this."

As much as I love the independence that comes with being an adult (making my own food decisions, my own money decisions, and so on), I could really do without the responsibility of making relationship choices. Because you know what? Feelings suck, man. And you can't always figure them out; they don't come along with an operator's manual. And sometimes your feelings CHANGE. Try explaining that to someone. "Oh, well, see, what I felt for you a month ago, I don't feel now, so sorry for all that you've given up for me, but I can't be with you. Oh, and by the way, I can't really tell you why, so I'll mumble on about some deeper connection or something that I don't really understand."


If my job asked me to explain something, and I gave them such a CRAP ASS answer, they would probably fire me. So why haven't I gotten fired from relationships? Why does anyone still want to be with me?

Sometimes I can't even stand my own bullshit. And others have helped me by making excuses like, "You were just confused," or "(Guy's name) knew he was taking a risk - all relationships are risks." But honestly, being with me should not be THAT risky. Cause realistically I feel like I have a lot to offer. Maybe. Kind of. I'm still figuring that part out.

Anyway, the point is that, while I'm quite good at being an "adult" in most areas, the past 4 months of my relationship life have felt like a toddler playing whack-a-mole. My emotions have been a constant ping pong match (with good players - I haven't hit the floor TOO many times, but I have bounced back and forth quite a lot). And honestly I don't think I deserve my adult card anytime soon.

At any rate, I've made one last and final sweeping decision, and hopefully (assuredly, if I let my brain do the talking) this will be the last. I'm tired of putting people in a state of chaos. I'm not worth the hell I've brought down the past few months, and I feel really awful about it.

I guess that hiatus wasn't really a hiatus after all.

Wednesday, October 3, 2012

Writing hiatus

"If you want ACTION, don’t write. Go and tell the guy what you want." - David Ogilvy

I have a few really important decisions to make coming up here. And it's not really something I feel comfortable putting out there for the whole world to see. Basically, I need to not make my life a spastic mess. So, if any blog posts go up in the next few days/weeks/month, they will be rants, or lighthearted--basically, they won't involve relationships or romantic feelings of any sort.

Or my anger issue. Which is strangely subsiding due to one thing in particular. Or one person. Hmph.

Anyways. I want action, and venting through here is clearly not the way to go. So, there. Break time.