Saturday, 30 March 2013

Psoriasis and Its Joys

Psoriasis is a horrible disease. It can affect one's skin, which is terribly itchy, uncomfortable and burning in some case. It can also cause arthritis, which is extremely painful and can lead to major deformities. But very few people realise is that you can have psoriasis in your nails. It can cause discolouration, defomity and other horrible things.

I know this personally. I do have psoriatic arthritis after all. While I don't have skin psoriasis, I do have nail psoriasis. It is currently extremely mild, as it responded well to Methotrexate and later Enbrel. However I did struggle for years! While it was nothing like most of the pictures you would see if you Googled 'Psoriatic toe nail' (And I recommend you don't), it was very bad and painful. I had, what looked like, nails growing over my nails. It cause pain with many kinds of shoes, so I had to buy shoes based off of how much 'toe room' they gave. I ended up having to get part of one of my nails removed because it was so badly damaged.

Not only was the pain very bad, but it was extremely embarassing. I was too embarassed to wear open toe shoes, go swimming in public and all sorts of things. I can only imagine this sort of pain people with skin psoriasis go through, especially because my mum has moderate psoriasis on her legs.

It's odd how these disease are. It's as if they get you one way or another. Especially with psoriatic arthritis.

Friday, 29 March 2013

High Heels

I'm doing the unthinkable: I'm going to wear high heels. You might call me mad- even I'm calling myself mad! But I'm doing it anyway.

Not without reason of course. I have a special event coming up in the next months. Everything is all set: I've got a dress, a date and all the trimmings. And even some shoes of the high heeled variety. Granted, their not very tall, but it's still a challenge. I made sure they had support and a thicker heel for stability.

I've been wearing them at home whenever I can. I figure I might as well gradually get used to them. Hopefully, it will all go to plan and I won't be in agony for the night. Hoping. Anyway, practice makes perfect.

Speaking of practice, I should probably start practicing dancing in my shoes. After all, I really don't want to break my ankle.

Thursday, 28 March 2013

Young, Rebelious Arthritis

I've been busy for the past few days, and I'm finally getting to sit down and relax for a while. I put in twelve hour days quite often. Whether this is due to the fact I am young or that I'm simply busy, I know not. But what I do know is that I am young. And I do "young things." Granted, my joints don't really know that. But my brain does. And Arthur fights me the whole time I do things I like! It doesn't stop me at all.

Nope. I go to concerts and dance the night away (if you want to know what that's like, check out a recent post 'Arthritis Dance'). I see theatre productions, despite the hours of inactivity. I go to parties. I shop for hours on end. I take long day trips. I do tons of things that make Arthur kick and scream and cry and beg me to go home. And I don't give in. Perhaps that's the young rebellious part of me?

I think so, because I'm good to my parents and listen to my professors. Obviously I had to ignore someone. :)

Tuesday, 26 March 2013

The Physical Therapists I Have Had

I've had a wide variety of physical therapists in my time.

My first was a young woman. I had to go to Physical therapy for a few weeks to recover  from a flare when I was eight. She was very nice, and I don't remember too much actual 'work,' because mostly it seemed like we played games and such. :)

My next physical therapist came when I was about twelve. She was an older woman who always started out sessions by loosening my hip. She was very nice indeed, though she did not tolerate when I started giving up the last few minutes of the session: I had to be giving way more than humanly possible at ALL times. Sometimes I wondered if this was like military training.

I had another physical therapist around that same time. He was an older man and very kind. I remember we had a lot of laughs. After he taped my feet so I wouldn't be so flat footed, he informed me I could stop walking like a robot. I only saw him a handful of times, though I did like when I got him.

After those two, I saw another young woman. This one was very nice to my mother and I during the consultation. After I'd go for sessions alone, that changed. She would tell me what to do, how many to do and walk away. I would see her around the corner having a coffee and chatting with some of the other physical therapists. She would give me a ridiculous amount of exercises to do and then leave me for way too long. When she came back, she would tell me what number I'm on. I'd tell her I finished a few minutes ago, and she wouldn't believe me. Then she would do the same thing again.

Rest assured, after two sessions with her, I saw another physical therapist. He was kind. He genuinely cared. We were even height compatible so it was perfect for certain stretches and exercises that I needed assistance with. Seems perfect? Not really. He thought he was a doctor, so he blamed all my pain on my knock knees. He worked a lot on getting my knees to go straight. Which didn't work at all since my knock knees are the result of an inverted thigh bone. No amount of muscle strengthening and stretching can ever get my bone to twist back in place.

I haven't gone back to physical therapy since , and it's been a couple years now. I've found working out on my own has given me the best results. Do you have any interesting physical therapists?

Monday, 25 March 2013

7 Tips for Self Injections

I've been taking Enbrel for about five months now. I wish we had known how wonderfully it would work for me so I could've switched earlier.

I think the biggest thing about Enbrel that most people don't like is that you have to get it through a shot. I know I didn't like this at first, as I read it burnt and stung terribly. However, five months in, I can't see life without it. I now present some of my wisdom.

1. When you are washing your hands before, make sure to run them under warm water for a minute. It's not only hygenic, but cold hands pinching some skin on your stomach or thigh is not comfortable at all.

2. If you use the pen and recieve a lot of pain from it, consider switching to the regular syringe. That way, you can control what force the needle goes in and how quickly the medicine is injected. Believe me, it's not that hard to learn to do correctly.

3. Remember, you don't have to rush. If you feel burning or stinging while injecting the medicine, doing it very slowly helps ease the pain. I do this because sometimes if I go too fast, I feel stinging.

4. You can stand or sit. Don't do what someone else is most comfortable with, do what you're most comfortable with. As long as it's done safely, does it matter?

5. Whilst squeezing out the big bubble is a good idea, don't worry about the little ones: It's just air, they won't cause any pain.

6. If you want, you can numb the injection sight before hand with some ice. I've also heard of numbing gels that you can buy in the store.

7. Don't be afraid. And don't be ashamed if you are nervous about needles. Honestly, it's scary to think of. But please, don't let your fear keep you from trying something that could really help you in the long run.

Sunday, 24 March 2013

Arthritis Dance

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.

Saturday, 23 March 2013

I'm a Bad Patient

I'm a very bad patient. I take all my medicines on time (most of the time). I go to my appointments. I eat rather healthy and keep my weight healthy.

But I don't do physical therapy.

Even though the doctor wants me to so much.

I've had a long history of physical therapy. Years and years of it. It never really showed any results. I've found that working out on my own has been the most effective for me personally: swimming, walking and biking has been the best for me. At physical therapy, I was stretched out and did a lot of exercises that stretched and world muscles I didn't know I have. But, mostly it did not help because they were not muscles that I needed in everyday life. By working out by myself, I'm able to strengthen muscles I use and need. For example, stairs are a problem and by working on machines that mimic stairs (with less strain that normal stairs), I'm beginning to find I'm slowly having an easier time.

For some, Physical therapy is wonderful. For others, sometimes alternatives are best.

Friday, 22 March 2013

5 Things Arthritis Hates

Arthur's personal list of the things he hates. This tends to double for Elizabeth, who has to put up with    Arthur when he's upset.

1. The cold. Whenever it's cold, Arthur refuses to move. Which means stiffness and pain for Elizabeth.

2. High heeled shoes. Maybe they're okay for some people, but Arthur does not enjoy nice shoes. Instead, he makes Elizabeth miserable until they're off.

3. Driving. Arthur prefers to be a passenger, otherwise he becomes very painful.

4. Running. Arthur hates the impact, Elizabeth hates that her limp is a million times worse when she runs.

5. Long days. Even if there is relaxation time, Arthur can't handle long days well and he becomes very painful. But he's going to have to learn to deal with it: Elizabeth's a very busy person.

Of course, this is just the tip of the iceberg. He hates lots of things and tries to keep Elizabeth from a lot of things. But she doesn't let him: the only thing that holds Elizabeth down is gravity.

Wednesday, 20 March 2013

5 Confessions of a Teen with Arthritis

Confessions of a teenager with arthritis.

1. I am embarrassed. Embarrassed of my knees, my weakness, stiffness, pain, and most especially my limp. I don't want to bring attention to my legs or be the only person walking in the corridor, and I truly hate that my face gives away pain.

2. I know people think I'm faking, and why wouldn't they? I'm a seemingly healthy, young lady and I must obviously be looking for attention. Even doctors are suspicious and every time there is a fluctuation in my weight, I know they instantly suspect eating disorders. It couldn't possibly be the new medicines.

3. It's hard to relate to kids my own age about a lot of things: you don't realise it, but chronic illness changes a lot in your life. I talked about this in my post 'Arthritis Normal.' A lot of kids my age think its odd that I take my time getting where I need to and that I don't enjoy parties, as well as other things.

4. As much as I would like to be in remission and not have to go to the hospital, I don't really mind it much anymore. I know a lot of people at the hospital and genuinely enjoy talking to them and I have gotten to know them well through the years, and they know me very well.

5. I've gained more through having this painful disease than I ever would have without it: I have beautiful friendships and have gained a lot of wisdom and compassion through it.

Perhaps these dont go for all teenagers, but they do for me.

Tuesday, 19 March 2013

I'm Back!

Hello everyone. I'd like to announce that I am back and ready to continue writing regularly (hooray!).  It's so great to be back: I didn't really enjoy my time away from everyone. And there is a good reason I had left for a bit, and though I was reluctant at first to tell you why, I feel I should now.

My great grandmother died. She passed Thursday evening. Friday was filled with making arangements to be able to attend the funeral. Normally, this would not be a problem but she lived about six hours away. Early Saturday morning, my parents, aunts, uncles, almost all my cousins, my grandparents and I packed up and left for a long journey. We stayed for the weekend in a hotel, and left on Monday.

I had never met my great grandmother, and if I did, I was most likely a baby. This is the same for all my cousins. Most of them didn't go to the funeral, but I did. It seemed to be the right thing to do.

Friday, 15 March 2013

I Have to Go

Hello everyone, I'm sorry to have to leave you for a bit. Unfortunately, a situation has come that is calling all of my attention and I will not be writing for a few days. While I won't go into detail, I would like to let you all know I'm okay and I promise to be back in less than a week. During that time, I will be able to respond to you in comments, emails, through Facebook and Twitter. I now invite you to sit back, like me on Facebook, follow me on Twitter (@Arthritis_Girl), and enjoy a Girl with Arthritis holiday.

Wednesday, 13 March 2013

Planning Flexiability

Going with the flow seems to be the best plan. Not to say that you should throw away all goals and not work. I just mean that accepting a change of plans will make everything less stressful than fighting it. Perhaps I'm a bit too laid back for my own good, but I usually have my best days when I just go with a change.

I don't really have much to say today, I just wanted to say that I think being flexible and positive towards change can really make all the difference. There's a lot of ways you could connect that to arthritis (ex. "I'm positive about trying a new medicine"), but I'd rather like to leave it there. Mostly, since I'm laid back with everything, not just arthritis.

Tuesday, 12 March 2013

Arthritis Made Me Wiser

Avoiding your problems doesn't fix them, and hiding from them doesn't make them go away. I know, when there is just too much stress it's very tempting to just stay home and sleep in. And when there's a conflict at work, avoiding it completely seems to be the  best fix. But, unfortunately, that is not the case. Like our fears and emotions, we have to face our problems, and even fix them if possible. Even if we're tired, stressed and just feeling broken: We can't let our problems dominate our lives and how we run them.

I cannot ignore Arthur. I cannot hide from Arthur. I cannot run from Arthur. Arthritis is demanding! I've had to face him day after day! He's a part of me, and even if I tried to ignore him, it would only make him worse! He's already a pain in the joint as it is, I don't need to encourage him. If I didn't care for him, I'd most likely be in the worse flair of my life and I'd probably begin having a lot of trouble gettting around.

Perhaps people with arthritis are so strong because we have to face struggles every day: we have never got the option of not having it for the day or quitting. I feel like that's really helped me gain the confidence and strength to face troubles and extreme stress. And it's also helped me learn my stress levels, so I know how to balance. I find that most young adults are just learning now how to do that. So, thanks Arthur: You're making me a wiser person.

Monday, 11 March 2013

Boys Get Arthritis Too!

I few years ago I had the opportunity to meet a group of sixty or so other children with arthritis. Of the about sixty, ten were boys. Research shows that women and girls get arthritis more often than men or boys. So whilst it's tempting to say that "men have it easier... again!," let us remember that even though three in four of us are most likely female, there is still a boy or man there.

Of course, both women and men have a hard time! And girls and boys have it very difficult too. Sometimes I wonder what it would be like to be a boy with arthritis. Of course, this is just my point of view and I could be completely wrong, but I do like trying to see things from another point of view. And what I see, shows that boys have their own set of struggles. Boys are expected to be tough and just bare pain. Also, people just expect boys like to play sports so they're probably more likely picked on when they can't play or preform poorly. And, like the sports, people expect boys to be strong so it might be embarrassing to have to ask for help sometimes. Plus, it's hard to be a minority in a minority. I don't mean at school, I mean in their disease. Whilst there are tons of girls with arthritis who communicate regularly on the Internet, I rarely find boys. Of course the girls would open their arms to a boy, but I bet it would be awkward for him. Even if it wasn't awkward, it is nice to be able to relate to a person of the same gender (that's a fact for boys and girls, women and men).

And of course it's very hard on girls! You worry no one will accept you, will tease you for swollen joints and that sort of thing, people think you're just faking it to get attention, people don't take your pain seriously at all, other girls are judging and will pick on you for every little imperfection, and a whole ton of other things. But today, I just wanted to look at it from a boy's point of view. However, I've come to the conclusion the the root of a lot of the challenges teens with arthritis face are other people. Or rather, other judging, cruel teenagers.

Sunday, 10 March 2013

I'm Now On Twitter!

The world is much larger than we can imagine. It's amazing to think that most of us will never see all of it, let alone connect with people from all over the globe. I really like how through this blog, I've connected with people from all over the world. So, to try and expand this further, Arthur and I have joined the wonderful world of Twitter!

So, now you can like me on Facebook and follow me on Twitter. Of course, I have more plans to expand but let's keep it 'one thing at a time,' please. :)

My Twitter:

Saturday, 9 March 2013

Arthritis Insecurity

Girls are insecure by nature. Boys are too, but I think boys are better at hiding it sometimes. I think the lyric "All girls feel too big sometimes, regardless of their size" ('I Like Giants,' Kimya Dawson) sums it up beautifully.It's common knowledge that people are afraid people will judge them badly over their looks or something, and it's common knowledge that people get jealous when someone else has something they don't. But something that doesn't seem to be common knowledge is that desiring another's features is completely different from being insecure over your's.

Dear World, I'd like go clarify that just because a person is insecurity, it does not mean they don't love themselves and desire different traits. And even if a person desires blue eyes rather than brown, it does not mean they are insecure over their brown eyes. Insecurity is just that you are not confident and/or are afraid of how another will judge you. It does not mean you are jealous. For example, I am jealous of how other people walk because I have a limp. I am insecure in public over my wavy hair because many girls have straight hair, but I still love my hair the way it is. I am not confident in its appearance and I have fears that people think it looks stupid, but I do like it that way.

Arthritis is an insecurity and jealousy disease. You can be jealous that one person can do something that you can't, or that a medicine worked for them but not you. You can be insecure about the appearance of your joints or in you limp, and absolutely hate them. You can also be insecure over having to use a mobility aid, but that doesn't stop you from using it anyway.

I think the point of this is to show that we need to begin seeing the world in more ways than one. And also that we need to stop using the word 'insecure' in place of other adjectives.

Friday, 8 March 2013

Arthritis Women are Tough

Today is International Women's Day. It's a day to celebrate all the women in our lives, and to give due recognizition to those women who are trying to change their lives and lives of other women around them.

It's a fact that most people with autoimmune diseases tend to be women. Pain, fatigue and all that other good stuff is terrible. But, I'd like to think the reason more women get it is because women are strong enough to handle anything. We're tough. :) I've met many wonderful ladies (as well as gentlemen) with arthritis and other autoimmune diseases, and I love how many of us become great friends and really help each other through tough times as well as happy times.

People are wonderful, and many women prove this everyday. Whether they're mothers raising (or who did raise) great children, business women making plans and deals worth millions, artists who are out to make the world more beautiful, or anything else that's possibly imaginable, we owe a lot to women.

Thursday, 7 March 2013

Rainy Arthritis

I've always felt that rainy days make for the best school days (rest assued, there have been many), simply because you're being productive on a day where you would be kept inside and bored anyway. I would much rather have a sunny day be a day to myself than a rainy one.

A lot of people are affected by weather. Cold tends to make arthritis worse, but rain can too. It's scientifically proven that the change of pressure when it rains is painful for arthritic joints. I'm one of those people who don't do well in the cold. I also don't do too well in the rain either, though its not nearly as bad. Regardless, I still think those are the perfect days to work: Sometimes I find its a distraction from the pain.

Then again, pain is really distracting in its own right. I've had days I couldn't focus at all, and usually by the end of the day I'm in a lot of pain anyway. In reality, there's no one day that's better for work or rest than another, it's how you're feeling that counts.

Wednesday, 6 March 2013

The Negativity of Teenagers

I've had a bad day. And it wasn't even a bad arthritis day.

I don't like how it seems that people don't appreciate the good things you do for  them. But what's worse is when they yell at you for the good things you do. Maybe I've got it wrong, but when someone does something nice for me, I thank them. And when people offer me something, I either accept and thank them or decline and thank them. I'm obviously very wrong.

The one thing that I hate the most however, is that the good in life is unappreciated. People are sponges: we tend to forget that if we only bring bad into our lives, that's all we can accept. If we welcomed good with arms wide open, we might see more of it. Bad days will happen, but we don't have to have them everyday. Sometimes it seems like people like being miserable though: Complaining, it seems, is quite fun. Then again, that's probably because I'm surrounded by teenagers.

I've often heard the saying "Birds of a feather, flock together." If you hang out with negative people, you'll probably become more negative. If you hang out with positive people, you will probably become positive. At least until a negative person comes around and brings everyone down.

Don't let them bring you down. Be who you are.

Monday, 4 March 2013

Arthritis Normal

Recently I saw a video of two teens trying to crack as many joints as possible. It would've been impressive if they could do it without trying like I can.

I've had arthritis, along with some deformities, from a very young age. Thus, I never really got used to "normal." But a lot of people have their world turned upside down when they begin feeling the symptoms of a chronic illness, and even more when it's diagnosed and treated. It's then when we want things to just go back to the way things were before. Unfortunately, that doesn't seem to happen. What does happen though, is that we create a new normal.

When we create routine, we become comfortable with it. So while at month one, giving yourself a Methotrexate or Enbrel injection once or twice a week is uncomfortable, scary and upsetting, in a few months it might not be so bad. Pills, while always annoying, might become part of morning and night habits (not addiction, just routine). You know, I can make my knees point backwards with how deformed my legs are and that's natural to me! Everyone else freaks out, and I still can't figure out why! I've lived like that for almost all my life and I can't help having knock knees, it's a part of me (quite literally).

New normals. Maybe not as easy everyone else's 'normal,' but you're own none the less.

On a side note, I am completely off the radar tomorrow so if you comment or send me a message tomorrow, please allow extra time for a reply.

Sunday, 3 March 2013

Abstract Arthritis

I am a huge fan of art. I love almost all of it, whether it is fine art, abstract expressionism, minimalists and so on. People think it's odd when I say I like abstract art, then again they think it's odd when a young person claims that they have arthritis.

But I do love abstract art. I feel like I can relate to it well: people over look it and call it 'another painting.' Since they can't 'see anything' they expect there is nothing there worthwhile, or if they do see something, it's a 'problem.' 

From the time I was young, I felt like a walking abstract painting: no doctor who just glanced at me could figure out what was there, and when someone did look long enough to find arthritis, it still took longer to find out what kind (I was at rheumatoid arthritis and fibromylgia for at least a year). To this day, it's still a lot of guessing: guessing which medicine might work and what will happen next. And since people can't see my arthritis or the severity of it, I still feel like a painting that no one will think deeply enough about to find what is wrong. Arthritis is in no way a fine art.

Art is not just beauty. Art is a lifestyle.

Saturday, 2 March 2013

The Vanity of Disability

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 unfortunately. Although my disability is 'hidden', the effects of it are obvious at times. And yes, people do stare at times. It's true that some people don't accept difference. That's why we must embrace differences; ALL people have the right to take care of themselves, whether it be through a hearing aid or through needing assistance sometimes. Maybe I'm wrong, but I think it's better to take care of a problem right away than to let it grow and become a larger challenge later.

Thanks to Grace, who shared her story with me and helped in the writing of this post.

Friday, 1 March 2013

Crying Jaw Pain Away

I have Psoriatic arthritis in my jaw. It's not severe, but it does hurt a lot. Mostly, it comes when I'm stressed and I clench my teeth. Sometimes it's random though, so when I have to read out loud in class you can only imagine how it feels. I have a lot of sympathy for people with jaw problems.

What's odd about it, is that there is usually one form of relief that works better than any pain medicine or ice can do. Crying.  And while I don't have to often, when I do cry when I have jaw pain, it helps the pain so much. I think the reason is that I stop clenching my teeth and thus stop tensing the muscle. But crying is a way of, not just expressing, but relieving pain and stress.

Maybe it's because I'm a girl, but I think it's okay for people to cry. There is too much in life to bottle up, and unhappiness and sad feelings shouldn't be surpressed. I think that when people have had enough and start to tear up, even in a public or professional setting, I have way more respect for them than people who stare.

Then again, you never know if they stare because they're jealous.