Thursday, 30 January 2014

Unrested and Stressed

Over tired. Over stressed. Over busy. Is it being young that keeps us over everything, or is it simply life with a chronic illness? I have yet to know the answer. It seems that whenever the world gets busy, all symptoms increase. And when there's one thing going on, there's a hundred things going on. And when there's a hundred things going on, you have no time to rest. It's a vicious cycle.

Sometimes I have to tell myself over and over again that I am not lazy because I want to lie down and go on Facebook when I get a free moment. The rest is so necessary to a person with a chronic illness, and it's not just a half hour you need. It can take a few hours to get the rest necessary. Don't feel guilt for the need to rest during the day: You are very strong and deserve it. You deserve to be able to take care of yourself the best way you know how to. That means relaxing when you need it. When things get busy, it's even more important to get this rest. Put yourself first.

Never let anyone make you feel guilty because you can't do a hundred things at once. Most people can't without some sort of breakdown within two weeks anyway. You are a strong individual and need to care for yourself. "No one can make you feel inferior without your consent." -Eleanor Roosevelt.


Monday, 27 January 2014

Ew, Flu

Whether you call it the flu jab, flu shot, or influenza vaccination, there is one thing I know for certain: I've been hearing about it nonstop sine December. We're now ending January and the peak of flu season. It is said to be extremely important for people with chronic illnesses and weakened immune systems to receive the flu vaccine. For obvious reasons, flu can send one into horrible flares or become very serious in individuals with such health concerns. But still, no one really wants that jab. Including me.

Yep, me. I hate getting the flu vaccine. The person who doesn't flinch at getting eight tubes of blood taken or giving herself a shot twice a week is afraid of a little flu shot. I admit it: I haven't gotten it this year. I wasn't raised getting vaccinated yearly and it's still a foreign idea to me. Not only that, but I haven't been well the last few weeks. I've gotten sick several times since November and it tends to last a few weeks. I'm just getting over my fourth or fifth (I lost count) cold of the winter. Despite not having a fever, I didn't feel it would be a good idea to get the vaccine when I was sick. That and I didn't want to go to a place full of sick and contagious people, get jabbed, and be more sore and a little more sick for a few days when I was already sick. Are these justifiable reasons for not getting the flu vaccine?

Not at all. At least according to my rheumatologist. If you haven't gotten the flu vaccine yet, there's probably still time to. Do as I say and not as I do: just get it. The flu season won't be over until spring starts and there is still plenty of time to catch it.

Saturday, 25 January 2014

When the Teacher Hurt Me

I'm a very sensitive person. Though I can be quite sensitive emotionally, I mean this in the physical sense. Be it temperature or touch, it can be very intense. I've never really liked being touched because it can be quite painful, especially regarding my back. I can recall the favourite game among friends at age eleven being to poke me in the back when I least expected it: They liked to watch me jump. It was a cruel game, but children can be cruel.

However, when I was about thirteen I had a cruel teacher. I wasn't a huge fan of her to begin with, I thought she was a bit loud and too free to share her personal opinions. That and I thought she was an idiot, but that's a story for another time. Having been so young, my teachers were told about my juvenile arthritis and all that fun stuff. Unfortunately for me, this teacher couldn't hear over her own thoughts. I think I had even brought it up with this teacher, trying to help her remember when she made us do experiments that required running up and down stairs or lifting things.

Try as I did, it didn't work. One day we were assigned an experiment. Thankfully there was no need for running around, but we had to observe something under a microscope. I had been working in a group with two boys and I was staring intently into the scope, describing some observations for the others to write down. I didn't know that my teacher was trying to get my attention, so instead of maybe lightly tapping my arm or even just saying my name, she decided to use a more dramatic method. She pounded on my back three times, and I doubled over from the pain and shock.

In her defense, it was probably a tapping and not pounding. But to a person with chronic pain, it felt more like a hammer than a hand. I immediately asked her to never do that again because it hurt so much, but she just smiled  and walked away. The boys I was working with were very taken back by my reaction: They knew I had arthritis but I think they got a sense of what it was like.

To this day I still question the whole event. I never told anyone about it. I really should've told someone at my school, but I didn't. I took the pain and got on with the class. But it was wrong of me: I shouldn't have accepted that. Don't tolerate acts like that from anyone. It's rude, it hurts and it's downright cruel. Help yourself and stick up for yourself.

Wednesday, 22 January 2014

Borrowed Spoons

"I hate chronic fatigue so much. It's so hard to handle and work through."

"I get tired sometimes too."

I wish it was just feeling tired. I can deal with that. A twenty minute nap can help. A cup of coffee can help. But chronic fatige just doesn't. It hang around like a little black rain cloud. Sometimes it's little and seems to disappear. Other times you're trapped and can't get away. And if the physical side effects weren't so bad, sometimes people just assume you're really lazy. I hate that. So much.

Sometimes I think the worst part of having psoriatic arthritis is that even if I'm not too sore or stiff to do something, I have too much fatigue to do it. Things suffer when you can't get up and do things. Work. School. Friends. Family. But most importantly, you.

The Spoon Theory is a way of explaining chronic illness and fatigue to someone, and it's the best way I know how to explain it. I highly recommend reading it if you haven't. I've been having a horrible time recently with fatigue- for a month and a half I've been fighting really hard to push through. But I'm working on borrowed energy (or spoons), and I have for weeks. It's hard to live like that and it's downright exhausting.

But something did help. My mum bought blue arthritis awareness bracelets. She got a rubber blue one for my dad, and a clasp blue one for herself and one of my best friends with a ribbon charm. And for me, I got the same one as them. Except mine has two tiny spoons on it, so I always have extras. I've worn mine everyday since I got it. It really does help. Even though a bracelet isn't a cure, I think it's one of the best medicines I've been given.

You can do lots of things to try and help. Healthy eating, exercise, reduce stress, rest and all that good stuff. Honestly, who has the time or the energy for that? My advice: Don't stop doing what you love and surround yourself with those you love. I think that helps a lot.

Monday, 20 January 2014

"Flawed" by Andrea Dorfman

Hello! Today I really want to share this short film. I found it a few months ago but was only uploaded to the creator's YouTube channel recently, so I thought it would be the perfect time to share. I've loved this video and watched it probably a hundred times. I really hope you can spare the time to enjoy it.




"Flawed" is the true story of a woman who falls in love with a plastic surgeon, and must confront the idea of feeling flawed. I could relate to the message of her story completely. I think a lot of people can. Check out other works of Andrea Dorfman on her YouTube channel as well if you can: She does fantastic work and I highly recommend them!

Click here to see the video through YouTube.

Or use this link: http://m.youtube.com/watch?v=Jc5bSu1QMrE .

Saturday, 18 January 2014

Mental Health

Mental health. Some may argue that your physical health is most important, and as important as it may be I think mental health is just as important. I would rather lose my physical health but still have a healthy mind. Our mental and emotional health are very connected to physical health, and it's time we gave them such importance. So why do we degrade such things?

I've heard so many rude comments regarding diseases of the mind. Not comments meant to be funny, but outright rude. With that I've found a lot of ignorance. It's not right. I don't even want to get into the comments because this is not what it's about. This is about people shutting out one another. Everyone knows what's going on in their heads, or at least have an idea. Then, to hear so many people scoff at serious emotions and diseases is distressing. It can make a person suffering feel ashamed, and cause them to hide and suffer even more.

Why are we so ashamed of needing help with our mental or emotional health? It's nothing to feel ashamed of. Sometimes these things are chemical, no different from a physical disease. No one did anything to feel depressed or have bipolar disorder: it happens. It happens the same way things like asthma or lupus come about. I don't understand the degradment of caring for ourselves.

Don't be ashamed to ask for help. You did nothing wrong. There is nothing wrong with caring about your mental and emotional health. In fact, it makes you the stronger person to care for yourself.

Wednesday, 15 January 2014

The Right to Happiness

I'm a graphic design student. More or less, I study art. It's not an easy thing to study: There are sleepless nights working, sacrifices made and -of course- many, many tears shed. You put so much effort and work into what you do that if it were between you or your piece being hit by a bus, you would throw yourself into it. It's extremely hard, but it is very well worth it in the end.

I've always had an interest in medicine. Since the age of three I said I was going to be a doctor when I grew up. That's obviously changed. But I still really like medicine, despite the fact that sometimes I feel like I live in a medical drama gone wrong. I do a lot of reading on the subject and watch a lot of reality documentaries about doctors, nurses and patients (international and otherwise). I am often able to understand 'doctor talk' and I think it's interesting.

A lot of people have asked me why I don't study medicine if I'm so interested in it and keep art as a hobby. You may even be wondering this yourself. The difference, my dear, is passion. I don't have passion for medicine the way I do art. Nothing is worth doing if there is no passion. Both are very difficult, but rewarding careers. I wouldn't want to be the doctor, nurse or whoever who does her job without caring and goes home: it's not fair to me or -more importantly- my patients. It's just the same with the designer who does generic work and goes home: it isn't fair to their clients or them. A lot of people don't understand that.

You can't let others write your life for you, just as they don't let you write theirs. Life is only so long, you can't waste it doing what others want. You have the right to be happy. You have the right to do what you love. You can do whatever drives you, you just have to put the work into it. Don't let someone pressure you into something you don't want to do. It could end well, but often times it doesn't. Be brave. Put yourself first. You have the right to be happy.


Sunday, 12 January 2014

Psoriatic Nail Care

Finger nails and toe nails: We've all got them. Some people paint them, some people bite them, and some people have psoriasis on them. I have psoriatic nails. They're highly common in people with psoriasis and psoriatic arthritis, though you don't need either to have psoriatic nails. At this point in time I don't have psoriasis, which makes people wonder how I can possibly have psoriatic arthritis. It's actually because psoriatic nails are highly common in those with psoriatic arthritis and
shows the presence of psoriasis. I know of a few people who are diagnosed in the same way.

Psoriatic nails tend to having pitting (dents in the nail) but can have lines or seperation of the nail and skin, as well as brittle and discoloured nails. I've dealt with all those problems except pitting. Luckily it's mostly on my toes rather than my fingers, but it still does have it's share of problems. I use to have to swim for school and I'd want to wear open toed shoes. I even had to have part of a nail removed (ow). So I have my share of tips for anyone with nail problems:
  • Painting your nails can help keep them moist, but do take it off every four weeks and give your nails time to breathe. Clear coats are the best. It may be a good idea to change colour coats more often.
  • If you're going to paint them, use ones that contain no acetones. I wore varnish/polish that contained acetones and every time it made my nails flare. Acetones can damage a nail.
  • Keep affected nails short and buffed to prevent possible nail damage and breakage.
  • If your nails are brittle like mine and crack and rip as you cut them, trim them a little longer than you want them and then file them down. You'll get rid of any cracks or rips that way, and you won't break the nail close to the skin.
  • If your toe nail psoriasis is painful, see a foot doctor. They can help. Wear shoes that are a bit large or open in the meantime.
  • If your feet are particularly sweaty, change socks twice a day and after working out. The bacteria build up can make it worse. Wear shoes in pool showers and wet areas: it's important to protect your nails from possible infections.
  • Make sure that when you use moisturizing lotions, to cover your nails too: this can help the nails a lot! 
Psoriatic nails can be painful and embarrassing. I use to do swimming in school and was afraid everyone would think I was diseased and contagious because of my nails. No one ever said anything to me. In nice weather I never wanted to wear open toe shoes because of the same reasons: Ive never caught anyone staring. Nail problems- psoriatic or not- are very common. Have confidence in your nails: most people will go through a hard time with theirs at some point in their lives! People are more understanding than we believe.

Wednesday, 8 January 2014

The Best Day

The best way to start the day is calmly. Let the alarm go off a few times. Put on your favourite music.  Stretch gently if you can, even if you're still in bed. Think about the day ahead. Smile, when you get the strength, because it's a new day and a new start. Take a deep breath. Begin the day because it's a new adventure.

The best way to spend your day is calmly. Slow down: There's little need to rush. Smile at the weary stranger on the street. Live in the moment. Have a conversation with someone you never talk to but see every day. Notice the little things: The fresh flowers in a vase, the cooing baby on the bus, the brightly coloured postcards pinned on the wall. Don't let the small things frustrate you. Work with a smile. Let your friends know you love them.

The best way to end your day is calmly. Give yourself time for you. Take a soothing bath. Cuddle under a warm blanket. Lose yourself in a great book. Relax your body and your mind. Journal your thoughts and emotions. Don't dwell on the past. Scheme plans for the future.


Saturday, 4 January 2014

Psoriasis Statistics

I've always been really good with numbers, even when I was little. I was about twelve years old when I became very interested in statistics: 1 in every 1,000 child will have some form of arthritis, 2/3 will have 4 or less joints affected, and at least 30% will go on to have arthritis as adults. That's a lot for a child to take in. Sometimes you seemed like one of a large group and other times you were rare. When I was fourteen and got diagnosed with juvenile psoriatic arthritis, my numbers changed a bit: I felt part of an even smaller group. Only 2-10% of cases tend to be juvenile psoriatic arthritis, but it could be more since it sometimes looks like other types. And even though I found out 80% tend to have nail problems too, I also found 85% have psoriasis first.

I'm one in a small group of people who don't have psoriasis before the arthritis sets in. They say that one develops skin problems within months or years of the onset of arthritis. But I have had evidence of arthritis since I was one year old and I still don't have it. Where is the statistic about when people develop psoriasis after arthritis sets in? Where's the '50% within five years' facts and figures?

Last night I had a horrible dream. I was washing my face when one of my cheeks got really itchy. I scratched it and my skin began to break out in an aggravated, red psoriasis rash. I put cream on it to try and help but it made it worse: The psoriasis spread violently. Half my face was covered with it by the time I woke up in a panic.

I know how devastating psoriasis can be: I've seen it affect the lives of many people, including that of my mother. And I'm not afraid to admit I'm scared to death of getting it too. Every time I get stressed,  every time my skin gets really dry, and every time I get a seemingly innocent rash, my heart races. I feel like a ticking bomb, not knowing when I'll go off. Some days I don't know what's worse: Knowing it will likely happen or not knowing when it will happen.

Statistics tells us a lot: they can tell us the likelihood of something happening. But we beat odds everyday. When is there every true security in the world?

Thursday, 2 January 2014

My Lovely Stranger

There are a lot of reasons one can feel like a stranger at family gatherings. I think the most common reason is because families tend to be strangers to each other. Some families drift over time or after the death of a grandparent. Others are just distant. I can't speak for everyone of course. Being strangers isn't what hurts you though: It's when they don't know you. It's a stab in the back when the people who held you as a baby cannot remember that you're just a bit too old for a necklace sized for a five year old child. By more than a decade.

There's this one person I never connected with. I suppose it's because we are seemingly polar opposites, but I think it's a downright shame I've never had a proper conversation with him. You see, our relation implies we are very close but our actual relationship implies otherwise. We barely acknowledge each other at all. I've always assumed he never thought of me at all, which hurts considering I know a lot about him.

This past Christmas Eve I saw him at a family gathering. We briefly acknowledged each others presence and got on to talking with others. The night was grand and eventually everyone began exchanging and opening presents. I was given lots of cards as well as a necklace sized for a five year old. I sat happily joking with a cousin and watching the little ones playing with their new toys. Then he walked up to me and smiled.

"You're the only one I bought a present for."

He gave me a large, heavy box wrapped up. When I opened it, I was taken back completely. He gave me a beautiful art set, contained in a large wooden case. It had five different types of pencil, pastels, woodless pencils and even a wooden model. It was gorgeous. No matter how full and perfect the beautiful set was, it was nothing compared to how full and perfect my heart felt.

He had left to talk with someone when I was unwrapping the gift. I promptly found him to thank. I went to give him a hug and said thank you. He asked if I liked it, I told him I loved it. He said good and nodded, going back to a conversation. I nodded and went back to my conversation.

It's not being strangers that hurts. It's been forgotten that hurts. To use a quote from a beloved film, "'Ohana means family, family means nobody gets left behind. Or forgotten," -Lilo and Stitch.