Wednesday, 27 August 2014

Blood Donation Blues

I have to admit, I've said "Having arthritis is so stupid" in a serious conversation. It's a very frustrating thing to have. Insulting it doesn't take arthritis away but it does make you feel a little better. I think the thing that's so frustrating is that much of what happens when you have arthritis is out of your control. You really don't get much choice in things you want to do when your body isn't well, especially with a disease that isn't always well controlled.People commonly have dreams, or rather nightmares, about losing control. But it's very hard to deal with something out of your control in real life, especially the way it so intimately is involved in your world.

A few months ago my school was advertising a blood drive, and I was very excited. I had always wanted to donate blood, and my friends and I were going to give together. But being the person I am, I did my homework before the day of the blood drive. I found out that people with autoimmune diseases which are not in remission are not able to give blood, nor are people who take biologics. It makes perfect sense, but I'm still really upset that a part of me can't be used to help someone else. I've been told the only thing that matters is I wanted to help, and that counts in a world where many don't, but it's no consolation. It also makes perfect sense people with autoimmune diseases can't donate blood marrow, but you can bet your buttons I was upset at that news too.

It always seems like arthritis keeps me from the cool things I want to do- blood donations, certain roller coasters, standing for three hour studio classes, dancing like a normal person, and being able to chew gum for longer than a minute. Of course, it almost never keeps me from doing what I don't want to do! I'm physically capable of doing home work, doing errands and chores, and sitting and watching while everyone else has fun. Sometimes I enjoy myself more when I'm with adults than when I'm with people around my own age who are so filled with energy and nothing stops them from doing what they please. Except the threat of being arrested, of course. Sometimes I can't tell if it's the lack of control of my body or if it's the jealousy that is more painful.

Wednesday, 13 August 2014

The RA Lie

I've been told a lie under any circumstance is wrong, but there are times the truth is not understood. I don't encourage lying, but I understand it. That is because I lie about my diagnosis.

Rheumatoid arthritis isn't too common, but most people have at least heard it's name in passing. But compared to psoriatic arthritis, it's practically a celebrity. RA is just more commonly diagnosed, so it's more likely to hear about. In fact, many people with psoriatic arthritis will not be diagnosed or will be misdiagnosed with RA due to rheumatologists overlooking psoriasis or because you just don't have psoriasis (my case). I was said to have JIA when I was younger, until another rheumatologist distinguished it as juvenile onset psoriatic arthritis due to my family history, nail changes, and many other distinguishing symptoms. But even then, I've been told many times I could pass as having RA.

If you tell someone you have psoriatic arthritis, they look at you funny and ask what language you're speaking (Latin, actually). Sometimes they'll hear the arthritis and say "Oh, so it's like for old people?" But if you tell someone you have rheumatoid arthritis, they mostly either get it or tell you that their grandfather has that (bonus points if they tell you that you're too young for that). So, when I need to get my point across quickly (like to a security guard who asks why I have prescription pills with me, for example) I just say I have RA. I don't like to do it, but when I'm in a hurry it is a life saver. But any other time I tend to explain that it is psoriatic arthritis- I like spreading awareness.

But even when I've explained to people that my disease is like RA, but with a few differences, I still have a difficult time. They assume it's not as severe as RA ever will be, or that it's not serious. In fact, I've been told I'm very lucky it's not rheumatoid arthritis. But this is not as true- I have been told by rheumatologists that my PsA is very similar to RA in it's pattern and course. It's just I don't have the RA positive lab work, usual swelling (usual swelling, I do have swelling though) or redness. I have had nail problems, organ problems and many other fun things though. Call that unserious.

Sometimes it's easier to lie. I didn't say it's the right thing to do though, I wish I could do the right thing and be honest, but people give me such a hard time. I wish I could say "I have psoriatic arthritis" and for once have someone know what it is. I know many people won't agree with this. To be honest, I feel very guilty. But I'm also very tired of arguing that I have a valid diagnosis. I hope you understand.

Saturday, 2 August 2014

After He Left

I never liked him, and I don't think he liked me. That was fine by me. I was very quiet and an easy target. He was very loud and brash, and even at my ripe age of eleven I found him extremely obnoxious. I was glad when we didn't have classes together- it meant I could get my work done without comments that turned me red in anger and embarrassment. I was often picked on by my classmates, but he made my blood boil- somehow, he always knew just what to say or do to make me angry. One time he sprayed a pungent cologne in my face, and laughed when I scowled. Every day, I wished he would go away. I hated him, and I don't think he ever liked me.

I haven't thought about him in years, and I don't think he thought of me either. Why would we when there was no reason to? We went on to go to different schools in different towns, and we never crossed paths again. With no mutual friends- not even Facebook friends- there was no reason we would ever need to remember each other, let alone keep in touch. In fact, I was happy to put him and many others in my past when I was accepted to an amazing school in a different town. I had made a new start for myself and it made no sense to dwell on the boy who picked on me when we were little. I never had to think about him, and I'm sure he never thought about me.

I saw his picture the other day, but he probably never saw mine. He grew and became a young man with hard eyes and short hair. Still, I can only picture him as a smirking boy with floppy hair. I flipped through the 'student biographies' book my class made when I was ten years old. Next to his name, he said he wanted to design exotic cars. Mine said I wanted to be a doctor. My, how things have changed. I never thought about him until his very abrupt death this year. Even though I haven't seen him in years, his passing still made me upset. Every now and again he slips into my mind, and I wonder why he left. But that doesn't matter much anymore as there is no turning back the clock, so I think about the times he picked on me because he loved the way I got mad- it was funny to see me turn red. And I finally laugh, after all these years.