The Girl With Arthritis

  I find myself struggling socially now than I did at any other age. There are times when being a working young adult with psoriatic arthritis can be totally isolating. Even though I've been chronically ill since childhood, I found it was so much easier to maintain relationships back in high school and college. I used to always be around friends, hanging out in class and our dorms. I also had a summer vacation to work part-time, relax on my days off, and hang out with friends in the evening. Read the full article at psoriatic-arthritis.com

 It can be hard to be an introvert. There have been times when I come away from a social gathering completely drained. And when asked, sometimes everything in me wants to say 'no' to hanging out with others so I can enjoy spending time by myself. Having psoriatic arthritis seems to heighten my introverted nature. While there are times that I don't want to go out, there are many more times that I would like to, but I don't feel well enough. Read the full article at psoriatic-arthritis.com

   Psoriatic arthritis (PsA) affects every part of your life, even in subtle ways – including your friendships. After living with PsA since childhood, I assumed I knew everything there was to know about navigating friendships with arthritis. But after graduating from college and entering “the real world,” I was in for a huge shock. As it turns out, maintaining adult friendships is much more work than I anticipated. View the full article at HealthGrades.com .

As we get older and our situations change, our groups of friends tend to change a lot. Before I was diagnosed with arthritis, I had a close group of friends. After I began treatment after diagnosis, I lost them. We were young and I don't think they could really handle having a sick friend at that point: I understand, I stopped being mad a few years ago after I realised that. I think chronic illness reasons for lost friendships are the easiest to understand but also the hardest wounds to heal. Awhile ago,  I had some friendships end. To sum it up, I was told repeatedly that "I'm such a jerk," and that these friends are "so much better [people] than [me]." They meant it. I know them well enough to know they meant it. I'm going to leave it at that: I don't want to be too much more of a jerk. I tried to think of all the things I've said that could be hurtful, but I really couldn't think of anything. I consulted a few friends to ask if I'm...

A few weeks ago I was talking with a student nurse. Our conversation somewhat ended coldly, but not the way you would expect. You see, this person happened to say, "I mean, it's just arthritis." I kind of smirked, gave a small laugh and said "You're lucky you said that to me and not a patient: I know what you meant, but a patient would think you just completely dismissed their pain." As I gave her the heads up, she proceeded to obviously lose attention and began to text and laugh at a message, not acknowledging I had spoken at all. I get it. Nursing is an extremely difficult career. Believe when I say I understand- not completely, of course, since I'm not a nurse- but I see a lot of things they put up with and lots of great things they do enough to see the passion behind it. I'm in hospitals enough to be reminded of this constantly. And I understand that there will be one patient with a slight fever who insists they are extremely ill and in agon...

  "I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear." -Nelson Mandela I know so many people who are chronically ill: Through this blog and in person. It is through them that I've seen more courage than some will see in a lifetime. Most people think a child wouldn't need courage through illness and in hospitals because treatment isn't optional when your parents consent and hold you down. But it's true, especially when your disease is ongoing. Children, teenagers and adults show a lot of gumption in times of illness. Often times we develop many fears because of the uncertain nature of these illnesses. They battle this fear because living scared is no way to live at all. They face the fear of pain and scars and go through procedures because it might be better later. They face the fear of needles and side effects and take strong medication and immunosuppress...

"How are you doing?" This is a question that doctors and nurses often ask. 'Same as normal'- my normal, not a healthy person's normal. It's just the life I got use to. It's this life where pain is constant, and that's accepted because we have no cure. When other people ask me this, sometimes I know they care. And that's great- I can't thank them enough and I'm very grateful to have them. I know that they want to hear good news, and sometimes I have it and I'm happy to share, but a lot of the time I don't. Unfortunately, it feels like they only want the good news, because otherwise everything is depressing. And I feel guilty that I can't give them the news that they want to hear, so I tell them 'It's alright.' It's not a lie because most of the time I can manage. Even then, I see the whole hearted smile fade a little bit because I didn't say 'I'm cured.' Others really don't care. And that...

Everyday, people everywhere make a difference in the lives of people with chronic illnesses. Even people you only encounter once for a short time can make a huge difference. What's wonderful is when people who don't have to care, do care. Today,  I'd like to call them out and thank them. Dear Mrs. W, Thank you for really taking everything I was going through into consideration when you assigned class seats. I really appreciated sitting next to the heater, in the back where no one would bother me and where I could stretch out. Dear R, Even though we're just school friends, thanks for really caring when you found out I'm chronically ill.  I was so touched at how concerned you got the first time, and all the times you become concerned now. Dear Rollercoaster Attendant, Thanks for releasing the restraint for me when I couldn't do it like everyone else. I know it's a tedious job, so thanks for not appearing annoyed at all. And a huge thanks for when y...

Around this time last year, I was very close with someone. We've since have gone our separate ways. But whilst I was with this person, I heard some interesting things. There is one conversation in particular that I will probably never forget. It wasn't exactly 'kind,' for me at least. These are several quotes from that conversation that still stand bright in my memory. "I'm kind of glad you have arthritis..." Excuse me?! "... Because it feels like I'm helping someone." Am I a charity or something? Is that the only reason they were friends with me, because it was like community service? "I just want to go out and help people, which is why I feel so good about helping you: I'm making a difference." Are you? I didn't notice. Especially the time I really needed assistance in carrying a heavy object, but did it alone (with lots of struggle). Or when I couldn't unlock the restraint on a roller coaster and the atten...

I'm super sensitive to cold. Air conditioning quickly gets extreme for me, pools and water can be torturous and in winter, I'm always bundled up.  I have a hard time trying to explain why I don't like going swimming to others. They think I'm lazy or something, but it's honestly a struggle to build up the courage. I truly want to be able to get in the water and swim, but it's very painful. They don't understand, "yeah, it's cold to me too." So, I started to say it differently now. "It's like brain freeze in my bones." Literally. It's painful and deep ache to be cold. It tends to get the point across, but people are very insistent of course. I love when swimming pools are heated so I can enjoy the water but otherwise it's completely unpleasant. Never force yourself into a cold pool. Never let anyone force you. Don't listen to them; you shouldn't have to put up with pain for their enjoyment. If it were them in pai...

Last night I went out and did something I haven't done in a very long time- I went dancing. I know, it's an insane thing to do! Especially because I haven't been feeling that well all week. But I went out and did it anyway. And it was amazing. I had a great night and was really sore. But after about three cups of coffee, I was okay. And this morning aside from some stiffness, soreness, and some nausea I am absolutely fine. I'm shocked! My back and hips were killing me all week and then Friday it was like it all vanished. If there is one thing I will never understand, it is arthritis. It has been said numerous times but I cannot emphasise how when you have arthritis, there are days you are miserably ill and others you are on top of the world! This disease is very confusing, especially when you can barely move on Thursday but can go out dancing on Friday night. It can be frustrating when one day you can do something but the next day you can't. It's upsetting w...

A letter to Tom, a friend who is going through a hard time with his arthritis. Also, to anyone who needs it too. Dear Tom, Never let arthritis quiet you down. Be loud. Be proud. Be the person you've dreamt of being. A diagnosis defines the way your body works- not the person it contains. A mind is a beautiful thing: Never waste it. Even when your body can't seem to work right, build your mind and you'll go farther than you would ever believe. I know feeling broken can break you, but know that there is always a rainbow after a storm. It's hard to believe it at times, but there is so much hope. You never know what may work. There will be days when you are on top of the world. And sometimes nothing will be accomplished, but does it matter all that much so long as you tried? Don't let it stop you. Keep going on. Never let arthritis get in the way of your visions, your ideas and passions. Pain will never be stronger than your creative eye Tom, and the strength of...

I'm most likely correct when I say people with arthritis or any other chronic illness has probably heard one of these before. And being the very sarcastic teenager I am, I always have a great responce. :) "Autoim- what? Is it contagious?!" Autoimmune arthritis means that my own body is the cause of my arthritis. There are very many types of autoimmune diseases  out there, and most of them are chronic. And no, it's not contagious... sometimes I like letting people think that for a moment though. "Arthritis? Do you have hip replacements?" No.. I don't have hips of steal. Unfortunately, since most people associate arthritis as an old person's disease it is just expected that all of us have titanium joints. "If it hurts so much, why don't you use a wheelchair?" If you're not in pain at all, why aren't you moving all the time? "Why don't you take the medicine I saw on television?" Because it's not a...

"What does arthritis feel like?" This question was asked to me by a good friend of mine. My immediate responce: "It hurts." My friend had been getting a lot of knee pain recently and was curious if it was the beginning of arthritis. But then she asked me what the pain was like specifically. I couldn't answer. The brutal nature of that question made me realise I couldn't tell her what the pain was like. Even when I did find the right words, I cannot convey true feeling. I think our true relation of pain ended at "sometimes it's very achy." I don't think she understood when I said "it can feel like tearing, pressure, stabbing, and even like I just had all my joints pulled apart." Actually, she looked at me in horror. At least she understood that that's how I feel; I've known people who rolled their eyes as they saw me limp by.  Everybody has different pain- they feel it uniquely and at varying degrees. No tw...

I can dance. And I make sure can my friends dance, because if they don't dance then their no friends of mine. Just kidding. Arthur hates to dance, and he makes sure I can't either. You see, whenever I dance I look like a robot having a seizure. I have an awesome sense of rhythm too! It's just that my body doesn't know that. Arthur especially hates when I slow dance: He makes sure my joints crack, creak, and pop at a volume that most people -even teenage boys- find moderately horrifying. But he hates dancing in general. He makes sure my muscles get really tight so it's harder to sway and enjoy the beat. On top of that, he gives me tons of pain and fatigue. When I was about three, I took a month of dance lessons. Obviously, my early introduction to the art of dance did not make me any better since I still dance at the level of a three year old.

One of my friends has trouble with speaking. When she was very little, her parents discovered she had hearing difficulties. Rather than trying a hearing aid, which had more promise of helping her hear, they opted for letting the child walk around unble to hear. The reason for this was not that they couldn't get my friend an aid, it's that their child would look different from others. They denied the child the right to hear properly (which is crucial in developing speech) for vanity. You can only imagine how hard it is for her now. I always wondered what would have happened if my parents tried to hide my disability. I bet they would make me wear trousers and long dresses all the time so no one could see my knees. And I probably would have worse arthritis because it would be ignored. That is, if I would be let out of the house at all due to my limp. The world is a cruel place. For some people, home is an understanding sanctuary. For others, it's where the cruelty begins u...

Recently I've been thinking of the term "Arthritis Survivor." I've read it in the past and never really thought about it until now. I really don't have an opinion about people refering to themselves or others as an arthritis survivor, but I do have a story. My dad used to work with a man who had a daughter about my age with severe rheumatoid. She was constantly in and out of the hospital and used a wheelchair because it was too painful to move. She had it since she was very young and went through years of aggressive treatments and surgeries. She also had severe complications from the RA. When we were about twelve or so, she got leukaemia. It does happen rarely with kids with arthritis who take DMARDs. I can't stress how rare it is. But it did happen to her. She was very weak between the arthritis and now the chemo. She passed away when we were about thirteen. It's a really horrible thing when children pass away. Knowing someone with almost the same d...

As I wrote about yesterday, I had an interview for school. What was more interesting, however, is what happened after it. Let's back track a little. It's now a few hours after school ended and I'm walking from my interview to my extra class, despite it ending in about twenty minutes anyway. I'm very much dressed up and didn't want to take the five minutes to change clothes. I'm exhausted, in a lot of pain and also relieved at the same time. I walk into my class and the first thing I hear is "You owe me an explanation!!" Normally, I would expect this from a teacher. But this was shouted across the room by a friend of mine, and I couldn't figure out what in the world he was talking about. Actually, I felt like I was in trouble. Fast forward to today, I finally get to talk with my friend. When I asked him what explanation did I owe, he said he figured it out: "You were in hospital again because you got sick." I explained to him what did...

Yesterday I was invited to go to one of my friend's houses. She has a little ice skating rink, so my friends and I were invited to skate.One of my friends was on crutches, and when she walked in everyone said "Wow, Elizabeth, it's not you this time!" :) We all had a lovely meal, and then most of us got on the ice. We were all having a wonderful time, because even if you weren't skating, you were sitting next to a warm fire. Some of the boys couldn't find ice skates in their size so they just walked on the ice, which was very funny. A common thing you heard when I got on the ice was "Elizabeth, don't hurt yourself again." Some of us started pushing one another on these sort of plastic boxes. Finally it was my turn to push a friend who was sitting on one. We barely even left where we started when I felt some sort of force push against me (I suspect the girl's skate, as she said she was trying to help push herself). That force caused us to tip...

I write a good portion of my day, whether it's for school, this blog, communication or leisure. Some of my favourite things to write are skits and sketches, specifically comedies. I actually will use some in the coming months to make a short film for art class. Anyway, some of that inspiration for my comedy skits actually comes from having arthritis. No, it's not funny to have arthritis. But, I do find the humour in some of the worse parts of it, as you might have witnessed on this blog. I don't want to be sad at all, and I'm too stressed from school and such to be serious all the time too. And I've found that a lot of the time, people will learn way more when they can laugh and not be serious (Thank you to Horrible Histories for teaching me this). Also, as a side note, most I do actually preform these skits. Typically they require a wide variety of characters. So I play them all. Rest assured, you can only imagine how many mustaches I've ever drawn on. :) ...