As a lover of crude humor, I like to think of a quote from the famous, "Spongebob Squarepants", it is as follows:

“I was born with glass bones and paper skin. Every morning I break my legs, and every afternoon I break my arms. At night, I lie awake in agony until my heart attacks put me to sleep.”

This is a gross exaggeration, but it makes me laugh.

If you knew me or was in my class on frequent basis', you may (or may not) remember that I was having a lot of problems as of late with my shoulder. Or you heard me dreading the stairs grabbing my hip, or saying that my knees are bad (in addition to the fact that I practically have nubs for legs).

But one day it got to where I couldn't lift a carton of milk and within a couple weeks of my shoulder bothering me as bad as it was (and a year of not being able to properly workout, thinking about it).

This is how my first (regular) doctor's visit went:

Move your (shoulder, elbow, knee, hip) this way. [I cry each time]

You're way too young to be feeling this way, your joints shouldn't be a problem at your age. How old are you again?

I'm 20.

20?

Yes. 20.

How long have you been having these pains?

Um....I think I was like 13? 14? It's been a hell hot minute.

So, we're going to check your blood. You'll have your results in a week.

Second scariest damn week in my life, I'll tell you what.

I had 3 candidates:

1. Lyme disease (everyone was rooting for this, btw)

2. Lupus

3. Rheumatoid Arthritis

Only one was curable.

Result day was a blur.

You tested positive for Lupus. Your blood sugar is also low, so. But you did test positive for Lupus.

You'll have to see a Rheumatologist, but we have some on here.

Can we cure it?

No, but you can treat symptoms.

My mom was mad that day. I think it was because I cried a chunk (to myself, with sunglasses on, of course).

I was like 2 seconds from getting a tattoo AND a piercing (my mom is Muslim, this is a BIG deal). But she took me to see the water instead, and we made jokes about how we could ask people if they would let us on their lack because I found out I had Lupus like 15 minutes prior.

We're like that (lol).

We went to the Rheumatologist and he was awesome.

But he took more blood, and wanted more tests.

Move your (shoulder/knee/hip/ elbows/fingers)

You have limited mobility in your right shoulder. How do your hips feel typically?

If I'm laying down it feels like my bones are ripping through my skin and some nights I can't sleep.

Your knees?

They buckle frequently, it's like tightening a bolt with a wrench and it's getting harder and harder to tighten.

How long has this happened?

Since I was about 13 or 14.

And you never came earlier?

I always though they were growing pains, that's what everyone else said.

We got the real results two weeks later, this was the worst (two) week(s) of my life, I'll damn near tell you that.

Your white blood cells are higher than usual, but that is to be expected.

We didn't see it coming because we were sure it was either Lupus or Fibromyalgia, but you have Rheumatoid Arthritis.

So this is how he broke it down:

Rheumatoid Arthritis is an autoimmune disease, which means that when I was about 10 or 11 something happened for my immune system to decide to attack my joints and tissues. They don't know what triggers it.

My immune system sees it as a bad thing and goes into the big joints first, I guess it thinks it is easier or something, and as it goes through to my joints, it gets stronger as it learns how better to break through to the joints. If it becomes REALLY severe, in some cases it can come to your internal organs. I'll live my life hand in hand with pain.

By the time it gets to your wrists and fingers (which it has gotten to my right wrist and two of my right knuckles) it's strong and progressing.

It isn't curable because of the simple fact that it is my immune system that is doing the damage. (He made a terrible joke following this, but I am gonna keep this one to myself). You could treat the symptoms (the pain and inflammation) but there isn't any dietary, exercise, or lifestyle change that could really improve it.

HOWEVER, I am on a medicine to try to slow it down (fun fact: It was initially created to treat malaria during World War II.) it isn't guaranteed, but we are working on it and there are other options that we can test out. (We will likely do this, because with my luck, I am having shitty reactions to it).

My mom has been a godsend about this, she really has. We even make a joke about how I'm in the 3% of the population that have an additional muscle in my hand, BUT IT IS COMPLETELY USELESS. (This also came out of this appointment, it was dope. He ultrasounded my wrists).

You may be asking why I wrote this. Does she want attention? What is the purpose of this?

To be honest, it's a mixture of reasons.

1. I needed to update family members that I haven't told.

2. People that can relate to what I'm describing can become aware of what is happening in their own bodies, and maybe get checked.

3. It helps me cope.

I am scared. One thing that I have always had a problem with pain; in some way I have always had it, dealt with it, and now, I will always feel it. If they do in fact manage to get it to slow down, it may just be in my bigger joints, but I don't know. Some days it is hard to stand, my dominant arm is now limited in how it can move, and my knees and hips always hurt. It is hard to accept at 20. Although it is fairly common (the doctor said 1 in 100 I believe) not many feel it so early. It is a lonely thing. I've felt this for almost 8 years and it has been in my system for 10 or more, but still, having a name to it makes it feel all fresh and just...different.

But I am trying. Maybe this will spread around and people can know me and what this is like. My mom always teases me about how I'll be the youngest member of an RA support group, as I am already the youngest patient at my Rheumatologist's office, but if this can help, then shit, sign me up.

Until next time,

Marissa.