The First Day.

I can’t think of any way to tell you my story without starting at the beginning. I wanted to just focus on my life now, but it feels impossible to talk about the way my arthritis is today without giving you context about what it was like before. So we’re going to start at the very beginning, which Julie Andrews would like to remind you is a very good place to start.

The story starts like this: I was three years old and my mother was dressing me for the day. I was fussy and difficult, and my mother was running late for work. Everytime she tried to put my shoes on me, I cried and pulled away. She as late and frustrated, but she was starting to get concerned. She noticed my left ankle looked swollen. we were living with my grandparents back then, and she showed it to my Grandpa, a Kineseology professor. He agreed the ankle loked swollen, probably a sprain, and wrapped it in an ace wrap.

Here is what I remember: I have a vague memory of my mom trying to put my shoes on me, and that I wasn’t cooperating. I remember laying on the bathroom floor while my Grandpa looked at my ankle in the light. I don’t remember what they said exactly, just that I was not going to have to wear shoes…I won that round. Heh. Suckers. What’s interesting is that I don’t remember the pain. I just remember being very pleased with the no-shoe arrangement. After my ankle was wrapped they put my older sister’s fuzzy yellow chick slippers on my feet, which I was simply delighted by. i remember that the let me sit in the high chair, an indulgent treat because I wasn’t feeling well. Why I wanted to sit in the highchair in the first place I do not know. Probably my six month old sister had something to do with it.

It makes me feel happy, that my memories of the first day are so pleasant. Like my mind deleted the bad parts and left me with a lovely picture into the sweetness of my young life. It’s one of my earliest memories. The ones before then are scattered, like clips from a movie. The uncomfortable clown costume my mom made me wear for halloween, jumping into leaves with my sister, the jingle bells on my bib as I paraded around the house with my cousins at Christmas. not understanding why Emily’s pigtails were longer than mine. This is probably the last of the clips. i think because my mind kenw that i was going to need to be alert. The trailer was over…the movie had begun.



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Chapter 1

I wanted to start this blog way back, probably about a year ago. But I had an idea of what I wanted this blog to look like. Specifically, I wanted it to be funny, smart, relatable, and above all inspiring. I, of course exude funny/smart/relatable, so all I needed to do was run a marathon or wrestle a bear or something, and I would be in business! It’s really weird, but for some reason that hasn’t happened yet. Not to be all judgy towards marauding bears or anything…but way to drop the ball guys.* Since certain mammals who shall remain unnamed refuse to force my body into a state of adreneline induced super-strength so that I could impress you with my skillz, I guess I’ll just tell you my story instead.

When I was three years old I was diagnosed with Juvenile Rheumatoid Arthritis. This is an autoimmune disease that causes joints to swell and, you know. Hurt. Basically my immune syestem are a bunch of overachieving hermiones who not only like to kill unhealthy cells, but also whatever is nearby. In the joint regions. It’s possible that I have had this condition for twenty-three years and still don’t totally get it. I think it’s pretty much that where a normal immune system is like: “Hey! Look! A virus! Kill Kill Kill!” Mine finishes off said virus and then is all: “UGH. SOOOOOOOOOOOOOOOOO BORED. Why can’t we have cancer? Let’s eat this girl’s cartilage.” Am I rockin’ the “relatable” factor or what?? Yeah, maybe let’s stick to the swollen and hurty description. You can also go read this description. Mine is the Polyarticular kind.

Ok, so I spent my childhood being swollen and hurty. I had a pretty severe case, and from time to time even spent a month or two as an inpatient at the nearby Children’s Hospital. Please don’t let the image of a small innocent child laid up in a hospital bed fool you. It was…kind of Awesome. It was like having my own apartment at four. People had to play with me all the time, I got my meals brought to me on demand, and I had my own TV. WITH Cable. And! a Nintendo to play with whenever I wanted. My siblings were totes jealous. I’m not exaggerating when I say that there may have been some flung-myself-to-the-floor style tantrums when asked to leave the hospital. Basically, it was the kick-Aist of childhoods. I think that’s the thing I want to emphasize the most when I’m explaining my history with this disease. (Is it a disease? I kind of don’t think so, but that’s what we called it in the late eighties. My doctors have really failed me on terminology.) While having JRA was kind of a bummer, it also wasn’t.  It was just what was.

And technically, I suppose, what is. I sometimes catch myself talking like I no longer have JRA, like it is nothing more than a part of my past. When I was fifteen I began taking a medication called Enbrel, that pretty much changed my life. I have an actual memory of waking up one morning feeling really weird. It took me several hours into the day to figure out what it was: nothing hurt. Nothing at all. And just like that, all these things that used to be so difficult for me went away. I still would have bad days from time to time, but for the most part I just felt normal. Suddenly I didn’t need to spend hours everyday stretching and exercising just to maintain the ability to move. I could walk around the mall with my friends, I could sit on the lawn at lunch, I could bend down far enough to tie my own shoes. It was pretty huge. And since I didn’t need to do those hours of stretching and exercising, I didn’t. And I haven’t. For the last decade. Which, actually is kind of a stupid thing to do when you do in fact have JRA. (Or maybe I just have RA. I don’t know at what point, if ever I get to drop the “Juvenile”. So far no doctor has been able to answer this.) Even though my arthritis is under control, it is still there, and it’s active. I’ve felt myself losing range of motion in some of my joints, and in the ones I’ve maintained, I feel weak.

Part of the problem is that I don’t know what things I should be doing. And the things I do know that I can do are like, totally boring. Just stretches and super dull exercises that don’t involve bears at all. So I definitely should be doing those, but I also am looking for something more. I have no idea what I’m capable of doing physically. I mean, I have an idea of things I shouldn’t be doing. Anything high impact is kind of a no-no, including running. so my mythical marathon is probably out of the question. Swimming is really good, but I’m a bad swimmer. Pilates are good, but I have to modify a lot of moves, and I lose interest in it quickly. Which is another part of the problem! A lot of the things that do sound interesting, running, kick boxing, ninja training, are things that I probably shouldn’t do. And then I feel resentful and bored by the exercises I can do. I’ve just been letting myself get swallowed up in my own excuses and indecision for so. long. I don’t want to do it anymore.

What I would like to do with this blog is document my attempts to figure out my body. How to make it the strongest and healthiest it can be.

This was long and I really don’t think it made much sense, but it was my Chinese New Year Resolution to make myself just do this already, so: Here I go!
*So we’re clear, if at some future date I get mauled by a bear or large animal of any kind, I don’t want to be reminded of this post as an example of situational irony. I also don’t want to be corrected about how to correctly classify situational irony. Ok FINE, you can correct me, but first tell me something nice about my hair. I was hoping by the end of writing all this I would have something inspiring to end on after all. Dang.

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